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Deng Y, Yao Y, Wang C, Li T, Wang Y, Kang C, Tan H. Effects of Dignity Therapy on Dignity, Anxiety, Depression and Quality of Life for People With Burns: A Randomised Controlled Trial. J Adv Nurs 2025; 81:2722-2738. [PMID: 39304304 DOI: 10.1111/jan.16466] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 11/20/2023] [Revised: 08/20/2024] [Accepted: 09/01/2024] [Indexed: 09/22/2024]
Abstract
AIMS To evaluate the effect of dignity therapy on dignity, anxiety, depression and overall quality of life for people with burns. DESIGN A single-blind, double-arm, parallel randomised controlled study. METHODS The Patient Dignity Scale, Hospital Anxiety and Depression Scale, and Burn-Specific Health Scale-Short were employed to assess the dignity, anxiety, depression and overall quality of life for people with burns. These outcome indicators were measured and analysed at baseline, 2-, 4- and 8-week follow-up. The generalised estimating equations were used to analyse the effect of the intervention during each time point. RESULTS A total of 99 participants were recruited (50 in the intervention group and 49 in the control group), with a high retention rate of 97 participants (94.95%) completing the 8-week follow-up. All outcome measurement tools met the feasibility criteria related to completeness and responsiveness over time. Dignity was the primary outcome measure, with anxiety, depression and quality of life serving as secondary outcome measures. At the 8-week post-intervention, participants in the intervention group demonstrated a statistically significant decrease in dignity and anxiety and depression, and a statistically significant increase in burn-specific health. CONCLUSIONS Dignity therapy can effectively reduce the loss of dignity, anxiety and depression, and improve the quality of life for people with burns. This study has a positive impact on burn dignity nursing practice and provides healthcare professionals with a novel approach to help people with burns return to normal social life with dignity. IMPLICATIONS FOR THE PROFESSION It is important to develop patient-centred care for burns with dignity. Focusing on developing a rational understanding of non-discriminatory dignity care practices among clinical providers and to develop dignity-oriented clinical care practices on the wards. IMPACT This study validated the feasibility of implementing dignity therapy for people with burns. Dignity therapy is effective in reducing the degree of dignity impairment, reducing anxiety and depressive symptoms, and enhancing the quality of life for people with burns. Our findings can help healthcare professionals to provide personalised dignity care throughout the patient's journey to facilitate a dignified reintegration into society and life for people with burns. REPORTING METHOD This randomised controlled trial used the CONSORT guidelines. PATIENT OR PUBLIC CONTRIBUTION No patients or members of the public participated in the study design, data analysis or interpretation. CLINICAL TRIALS This study has been registered in the Chinese Clinical Trial Registry registration number: ChiCTR2200065145, 29 October 2022.
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Affiliation(s)
- YunYun Deng
- Department of Nursing, The Affiliated Hospital of Guizhou Medical University, Guiyang, China
| | - YiMing Yao
- Department of Nursing, Guangzhou Red Cross Hospital of Jinan University, Guangzhou, China
| | - Chang Wang
- School of Nursing, Guizhou Medical University, Guiyang, China
| | - Ting Li
- Department of Nursing, Guangzhou Red Cross Hospital of Jinan University, Guangzhou, China
| | - Yuan Wang
- Department of Nursing, Guangzhou Red Cross Hospital of Jinan University, Guangzhou, China
| | - ChanJuan Kang
- Department of Nursing, Guangzhou Red Cross Hospital of Jinan University, Guangzhou, China
| | - HuiYi Tan
- Department of Nursing, Guangzhou Red Cross Hospital of Jinan University, Guangzhou, China
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Weeseman Y, Scherer-Rath M, Christophe N, Dörr H, Sprangers M, Helmich E, van Poecke N, van Laarhoven H. Integration of experiences of contingency in patients with advanced cancer supported by a multimodal art approach. PLoS One 2025; 20:e0319918. [PMID: 40198665 PMCID: PMC11978074 DOI: 10.1371/journal.pone.0319918] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 06/01/2024] [Accepted: 02/10/2025] [Indexed: 04/10/2025] Open
Abstract
To support patients with cancer in a palliative treatment phase with the integration of experiences of contingency into their life narrative, we developed a multi-modal approach: In Search of Stories (ISOS). ISOS consists of the following elements: filling out the self-report RE-LIFE questionnaire, drawing of Rich Pictures, and reading an exemplary story with a spiritual counselor, followed by a co-creation process with a professional artist. In the current article we illustrate how patients moved through the process of integration of experiences of contingency during the meetings of ISOS by presenting two case descriptions. All meetings of the first two patients who completed the ISOS project were audio recorded, imported into Atlas-Ti and analyzed by applying a phenomenological approach to deepen our understanding of the patient's experiences throughout the meetings. The two cases showed distinct differences on how the experience of contingency was dealt with and how the integration of experiences of contingency into the life narrative unfolded. Patients focused on life goals and values concerning connection with loved ones, and on leaving a legacy behind, which was expressed through creating a work of art. The current study provides preliminary insight into how patients can go through a process of integration of experiences of contingency into their life narrative, which could inform the development of future support for patients with advanced cancer dealing with experiences of contingency. Specifically, offering patients possibilities to express themselves through materials within an artistic setting could support these patients to find new words and additional non-linguistic ways of expressing their experiences, and thereby facilitate the integration of experiences of contingency into their life narrative.
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Affiliation(s)
- Yvonne Weeseman
- Department of Medical Oncology, Amsterdam University Medical Centers, University of Amsterdam, Amsterdam, The Netherlands
- Cancer Center Amsterdam, Treatment and Quality of Life, Amsterdam, The Netherlands
| | - Michael Scherer-Rath
- Faculty of Philosophy, Theology and Religious Studies, Radboud University, Nijmegen, The Netherlands
| | | | - Henny Dörr
- HKU University of the Arts Utrecht, Utrecht, The Netherlands
| | - Mirjam Sprangers
- Department of Medical Psychology, Amsterdam UMC Location, University of Amsterdam, Amsterdam, The Netherlands
- Amsterdam Public Health, Mental Health, Amsterdam, The Netherlands
| | - Esther Helmich
- Amsta Healthcare Organization, Amsterdam, The Netherlands
| | - Niels van Poecke
- Department of Medical Oncology, Amsterdam University Medical Centers, University of Amsterdam, Amsterdam, The Netherlands
- Cancer Center Amsterdam, Treatment and Quality of Life, Amsterdam, The Netherlands
| | - Hanneke van Laarhoven
- Department of Medical Oncology, Amsterdam University Medical Centers, University of Amsterdam, Amsterdam, The Netherlands
- Cancer Center Amsterdam, Treatment and Quality of Life, Amsterdam, The Netherlands
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Beasley E, White V, Ugalde A, Brooker J, Skvarc D, Mikocka-Walus A. Effect of third-wave cognitive behavioural interventions on biopsychosocial outcomes in people diagnosed with advanced cancer: A systematic review and meta-analysis of randomised controlled trials. J Psychosom Res 2025; 192:112106. [PMID: 40132324 DOI: 10.1016/j.jpsychores.2025.112106] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 07/25/2024] [Revised: 03/16/2025] [Accepted: 03/17/2025] [Indexed: 03/27/2025]
Abstract
OBJECTIVE People with advanced cancer experience elevated psychological morbidity and poor quality of life (QoL). The role of third-wave cognitive-behavioural therapy (CBT) interventions in addressing these needs has been examined, but not synthesised in a systematic review. The aim of this review is to systematically identify, analyse and review randomised controlled trials (RCTs) which examined the effect of third-wave CBT interventions on biopsychosocial outcomes (e.g., anxiety, pain, QoL) in this population. METHODS A systematic search was undertaken on MEDLINE, PsycInfo, CINAHL, Embase and Cochrane CENTRAL. Studies were included if they examined the effect of third-wave CBT interventions on biopsychosocial outcomes in adults living with advanced cancer in RCTs. The Cochrane Risk of Bias tool assessed risk of bias for each study. A random-effects model was fitted to the data and the restricted maximum-likelihood estimator was applied. The standardised mean differences (SMD) between control and experimental groups at short- and long-term follow up were used. RESULTS Twelve RCTs with 782 participants were identified. Meta-analyses demonstrated that third-wave CBT interventions were only more effective than comparator groups in the short-term improvement of QoL (SMD = 0.19, 95 % CI [0.00, 0.37], p < 0.05). The results of the 11 other meta-analyses did not reach statistical significance. Eight studies were classified as having unclear risk, and four were classified as high risk of bias. CONCLUSIONS Third-wave CBT interventions may be effective in enhancing QoL in people with advanced cancer. However, more rigorous RCTs are needed to establish their efficacy in this population.
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Affiliation(s)
| | - Victoria White
- School of Psychology, Deakin University, Burwood, Australia
| | - Anna Ugalde
- School of Nursing and Midwifery, Deakin University, Burwood, Australia
| | - Joanne Brooker
- Faculty of Psychology, Counselling & Psychotherapy, Cairnmillar Institute, Hawthorn East, Australia
| | - David Skvarc
- School of Psychology, Deakin University, Burwood, Australia
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Franklin JE. Palliative hypnosis approaches in the symptomatic treatment of amyotrophic lateral sclerosis (ALS). AMERICAN JOURNAL OF CLINICAL HYPNOSIS 2025; 67:54-68. [PMID: 37910649 DOI: 10.1080/00029157.2023.2252875] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/03/2023]
Abstract
Amyotrophic lateral sclerosis (ALS) is a rare, incurable, and ultimately fatal, devastating, progressive degenerative neurologic disease. It causes upheaval in the lives of patients and family caregivers alike. Palliative care can play an important supportive role in the care of patients and families dealing with the devastation of this illness. Clinical hypnosis has demonstrated benefits in treating the symptoms associated with severe chronic illness. There are, however, few studies looking at the benefits of clinical hypnosis in treating the symptom burden of ALS. This article describes palliative care and how it can provide an additional layer of support to seriously ill patients. A brief review of previous studies of hypnosis in the supportive, symptomatic treatment of ALS is provided, followed by a description of a case series of 30 Veterans who received clinical hypnosis and self-hypnosis training as a complementary treatment for the symptoms of ALS. Details of three case histories are included to highlight and discuss specific strategies and emblematic clinical responses. There is evidence that clinical hypnosis can benefit ALS patients and family caregivers struggling with this devastating illness.
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Julião M, Simões C, Chochinov HM. "It seemed I was having a conversation with him": Posthumous Dignity Therapy case series. Palliat Support Care 2025; 23:e66. [PMID: 40019176 DOI: 10.1017/s1478951525000173] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 03/01/2025]
Abstract
OBJECTIVES Dignity Therapy (DT) is a brief psychotherapeutic intervention designed to address the psychosocial and spiritual needs of terminally ill patients. Research demonstrates DT's efficacy in reducing dignity-related distress and alleviating psychosocial symptoms like depression and anxiety in terminally ill patients. Its application has been extended to nonterminal patients with chronic conditions, mental health challenges, and children nearing the end of life, with promising results. DT also benefits families and caregivers, promoting emotional resilience and facilitating grieving. However, the potential for proxy applications, such as posthumous DT (p-DT) - conducted by relatives after a patient's death or on behalf of individuals unable to participate - remains underexplored. METHODS A case series report. RESULTS This case series examines 3 relatives who engaged in p-DT, highlighting its feasibility and potential benefits. SIGNIFICANCE OF RESULTS Findings suggest p-DT may serve as a valuable tool for bereavement support, warranting further research to expand its scope and accessibility.
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Affiliation(s)
- Miguel Julião
- Department of Palliative Medicine, Equipa Comunitária de Suporte em Cuidados Paliativos, ULS Amadora/Sintra, Amadora, Portugal
| | - Carolina Simões
- Department of Palliative Medicine, Equipa Comunitária de Suporte em Cuidados Paliativos, ULS Amadora/Sintra, Amadora, Portugal
| | - Harvey Max Chochinov
- Department of Psychiatry, University of Manitoba, Cancer Care Manitoba Research Institute, Winnipeg, MB, Canada
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Arimany-Manso J, Torralba F, Lima AI, Trill MD. A comprehensive approach to end-of-life care. Medical-legal, ethical, social, psychological and care aspects. Med Clin (Barc) 2025; 164:e8-e12. [PMID: 39567281 DOI: 10.1016/j.medcli.2024.10.001] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 09/06/2024] [Revised: 10/03/2024] [Accepted: 10/05/2024] [Indexed: 11/22/2024]
Affiliation(s)
- Josep Arimany-Manso
- Dirección de Calidad y Seguridad Clínica, Hospital Clínico de Barcelona, Barcelona, España; Cátedra de Medicina Legal, Responsabilidad Profesional y Seguridad Clínica, Facultad de Medicina y Ciencias de la Salud, Universidad de Barcelona, Barcelona, España; Consejo Asesor de la Fundación Mémora, España.
| | - Francesc Torralba
- Consejo Asesor de la Fundación Mémora, España; Departamento de Ciencias de la Educación, Universitat Rovira i Virgili, Barcelona, España
| | - Ana Isabel Lima
- Consejo Asesor de la Fundación Mémora, España; Departamento de Trabajo Social y Servicios Sociales, Universidad Complutense de Madrid, Madrid, España
| | - María Die Trill
- Consejo Asesor de la Fundación Mémora, España; Cancer Center, Clínica Universidad de Navarra, Madrid, España
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D'Andria Ursoleo J, Calì C, Losiggio R, Limone V, Mucci E, Monaco F. Spiritual Care in Palliative Medicine and End of Life: A Bibliometric Network Analysis. J Palliat Med 2025; 28:265-279. [PMID: 39093919 DOI: 10.1089/jpm.2024.0007] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 08/04/2024] Open
Abstract
Background and Objectives: Spiritual care is an essential component of care for the terminally ill, because of its potential to positively impact patient perception of quality of life and dignity. However, it continues to be the least cultivated or even most overlooked aspect of palliative care and end of life. We performed a methodological review using bibliometric analysis to provide a holistic view of the scientific output published on this topic in the literature at the same time outlining present perspectives and research trends. Methods: In accordance with the BIBLIO checklist for reporting the bibliometric reviews of the biomedical literature, pertinent articles were retrieved from the Web of Science (WOS) database. The search string included "spiritual care," "end of life," and their synonyms. The VOSviewer (version 1.6.17) software was used to conduct comprehensive analyses. Semantic and research networks, bibliographic coupling, and journal analysis were examined. Results: A total of 924 articles were identified in WOS, and 842 were retrieved. An increasing trend in the number of publications is observed from 1981 to date, with a peak in the 2019-2021 timeframe. Most articles focused on palliative care, spirituality, spiritual care, religion, end of life, and cancer. The Journal of Pain and Symptom Management contributed the highest number of published documents, while the Journal of Palliative Medicine was the top-cited journal. The highest number of publications originated from collaborations of authors from the United Kingdom, the United States, and Australia. Conclusion: The remarkable increase in the number of publications on spiritual care observed in the years of the COVID-19 pandemic likely reflected global concerns, reasserting the importance of prioritizing spiritual care for whole-person palliation. Spiritual care is integrated with palliative care, in line with the latter's holistic nature and the recognition of spirituality as a fundamental aspect of end-of-life care. Nurses and chaplains exhibited more involvement in palliative-spiritual care than physicians reflecting the belief that chaplains are perceived as specialized providers, and nurses, owing to their direct exposure to spiritual suffering and ethos, are deemed suitable for providing spiritual care.
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Affiliation(s)
- Jacopo D'Andria Ursoleo
- Department of Anesthesia and Intensive Care, IRCCS San Raffaele Scientific Institute, Milan, Italy
| | - Cristiano Calì
- Department of Philosophy and Educational Sciences, University of Turin, Turin, Italy
| | - Rosario Losiggio
- Department of Anesthesia and Intensive Care, IRCCS San Raffaele Scientific Institute, Milan, Italy
| | - Vito Limone
- Faculty of Philosophy, Vita-Salute San Raffaele University, Milan, Italy
| | - Elena Mucci
- Brighton and Sussex Medical School, University of Sussex, Brighton, United Kingdom
| | - Fabrizio Monaco
- Department of Anesthesia and Intensive Care, IRCCS San Raffaele Scientific Institute, Milan, Italy
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van Dammen H, Vissers K, van der Putten GJ, Engels Y. The Dutch version of the Dignity Therapy Question Protocol for individual Dutch nursing home residents without cognitive impairments (during COVID-19): a pilot study. BMC Geriatr 2025; 25:13. [PMID: 39762735 PMCID: PMC11702223 DOI: 10.1186/s12877-024-05632-8] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 01/13/2024] [Accepted: 12/13/2024] [Indexed: 01/11/2025] Open
Abstract
BACKGROUND Dignity therapy is a brief, structured psychotherapeutic intervention originally designed to help last-stage cancer patients maintain their dignity. It consists of a semi-structured interview encouraging patients to talk about their lives. The recorded session are transcribed and edited, after which the patient has the opportunity to make further changes to the final document. It can be shared with whom the patient likes. We cross-culturally translated dignity therapy into Dutch and explored its feasibility of applying it to Dutch cognitively capable nursing home residents. METHOD Beaton's Guidelines for Good Clinical Practice were used to cross-culturally translate dignity therapy. Next, a pilot study was conducted with 12 nursing home residents in which the original English-language questionnaire was transculturally translated according to the method of Beaton. After the interviews were completed, feasibility was examined by open-ended questions and a five-point Likert scale questionnaire. RESULTS We translated the questionnaire. The translated questions were well understood and resulted in an appropriate Dutch version of the English-language dignity therapy questions. However, the words 'dignity' and 'therapy' caused confusion. The mean number of words in the legacy document was 1078 words, which appeared shorter than in a community-based hospice setting or patients with metastatic cancer or terminally ill people. The reading aloud was much appreciated and was an emotional experience for some. CONCLUSION We successfully translated the DTQP into the Dutch language and tested it in 12 nursing home residents. The questions posed by this therapy appeared suitable and acceptable. Furthermore, participants all accepted the therapy and gave no suggestions to adapt the procedure. Follow-up research in the form of an impact study is needed to show whether and how this therapy can strengthen the sense of dignity of Dutch nursing home residents.
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Affiliation(s)
- Herman van Dammen
- ¹Department of Anesthesiology, Pain and Palliative Medicine, Radboud University Medical Center, Nijmegen, The Netherlands.
| | - Kris Vissers
- ¹Department of Anesthesiology, Pain and Palliative Medicine, Radboud University Medical Center, Nijmegen, The Netherlands
| | - Gert-Jan van der Putten
- ²Dental Department, Radboud University Medical Center, Nijmegen, The Netherlands
- Orpea Dagelijks Leven, Apeldoorn, The Netherlands
| | - Yvonne Engels
- ¹Department of Anesthesiology, Pain and Palliative Medicine, Radboud University Medical Center, Nijmegen, The Netherlands
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Iida H, Hayashi S, Yasunaka M, Tsugihashi Y, Hirose M, Shirahige Y, Kurita N. Patient-centred care and quality of life and hope among Japanese patients receiving home medical care: a multicentre, cross-sectional study. BMJ Open 2025; 15:e089639. [PMID: 39762091 PMCID: PMC11749788 DOI: 10.1136/bmjopen-2024-089639] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 06/04/2024] [Accepted: 11/22/2024] [Indexed: 01/23/2025] Open
Abstract
OBJECTIVES Patient-reported outcomes reflecting quality of life (QOL) and hope are essential targets for in-home medical care. This study examined the association between the quality of patient-centred care and both QOL and hope. DESIGN Multicentre, cross-sectional study. SETTING Twenty-nine home care clinics in the Tokyo Metropolitan Area, Nara Prefecture and Nagasaki Prefecture in Japan. PARTICIPANTS 200 patients receiving home medical care. EXPOSURE Patient-centredness was measured using the Japanese version of the Primary Care Assessment Tool-Short Form (JPCAT-SF). OUTCOME MEASURES The primary outcome measures were QOL, assessed using the QOL-Home Care (QOL-HC) scale, and hope, measured using the Health-Related Hope (HR-Hope) scale. Mixed-effects linear models were applied. RESULTS A higher JPCAT-SF total score was associated with a higher QOL-HC score (adjusted mean difference per 10-point increase: 0.28, 95% CI 0.16 to 0.40). Among the JPCAT-SF domains, higher scores in first contact (0.16, 95% CI 0.08 to 0.23), longitudinality (0.20, 95% CI 0.11 to 0.29), comprehensiveness (services available) (0.12, 95% CI 0.03 to 0.20), comprehensiveness (services provided) (0.08, 95% CI 0.01 to 0.15) and community orientation (0.11, 95% CI 0.02 to 0.20) were also associated with higher QOL-HC scores. Similarly, a higher JPCAT-SF total score was associated with a higher HR-Hope score (adjusted mean difference per 10-point increase: 4.8, 95% CI 2.9 to 6.7). Additionally, higher scores in individual JPCAT-SF domains were associated with higher HR-Hope scores: first contact (2.7, 95% CI 1.3 to 4.1), longitudinality (2.5, 95% CI 0.8 to 4.2), coordination (1.2, 95% CI 0.2 to 2.3), comprehensiveness (services available: 1.8, 95% CI 0.5 to 3.2; services provided: 1.3, 95% CI 0.4 to 2.3) and community orientation (1.8, 95% CI 0.5 to 3.1). CONCLUSIONS Higher quality patient-centred care is positively associated with enhanced QOL and hope among home medical care patients. Patient-centredness should be strengthened in daily clinical practice.
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Affiliation(s)
- Hidekazu Iida
- Center for Next Generation of Community Health, Chiba University Hospital, Chiba-city, Chiba, Japan
- Department of Clinical Epidemiology, Graduate School of Medicine, Fukushima Medical University, Fukushima-city, Fukushima, Japan
- You Home Clinic, Bunkyo-ku, Tokyo, Japan
| | - Shinu Hayashi
- Department of Clinical Epidemiology, Graduate School of Medicine, Fukushima Medical University, Fukushima-city, Fukushima, Japan
- You Home Clinic Heiwadai, Nerima-Ku, Tokyo, Japan
| | - Masakazu Yasunaka
- Dr. Net Nagasaki, Nagasaki-city, Nagasaki, Japan
- Yasunaka Neurosurgery Clinic, Nagasaki-city, Nagasaki, Japan
| | - Yukio Tsugihashi
- Department of Clinical Epidemiology, Graduate School of Medicine, Fukushima Medical University, Fukushima-city, Fukushima, Japan
- Medical Home Care Center, Tenri Hospital Shirakawa Branch, Tenri-city, Nara, Japan
- Department of Public Health, Health Management, and Policy, Nara Medical University, Kashihara-city, Nara, Japan
| | - Misaki Hirose
- Dr. Net Nagasaki, Nagasaki-city, Nagasaki, Japan
- Hirose Clinic, Nagasaki-city, Nagasaki, Japan
| | - Yutaka Shirahige
- Dr. Net Nagasaki, Nagasaki-city, Nagasaki, Japan
- Shirahige Clinic, Nagasaki-city, Nagasaki, Japan
| | - Noriaki Kurita
- Department of Clinical Epidemiology, Graduate School of Medicine, Fukushima Medical University, Fukushima-city, Fukushima, Japan
- Department of Innovative Research and Education for Clinicians and Trainees (DiRECT), Fukushima Medical University Hospital, Fukushima-city, Fukushima, Japan
- Center for Innovative Research for Communities and Clinical Excellence (CiRC2LE), Fukushima Medical University, Fukushima-city, Fukushima, Japan
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Potter S, Coombs S, Jaaniste T. Biography Writing in the Pediatric Palliative Care Context: Review and Feasibility Data. CHILDREN (BASEL, SWITZERLAND) 2024; 12:4. [PMID: 39857835 PMCID: PMC11763993 DOI: 10.3390/children12010004] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Subscribe] [Scholar Register] [Received: 11/29/2024] [Revised: 12/17/2024] [Accepted: 12/19/2024] [Indexed: 01/27/2025]
Abstract
BACKGROUND Biography writing services are increasingly being used with adult palliative care patients, helping them document their stories in a way that provides meaning for themselves, family, and friends. However, the feasibility of applying a biography program to a pediatric palliative care context is less well known. METHODS A narrative review of the literature was conducted, drawing on existing adult biography programs, while noting differences between the pediatric and adult contexts. The Story Project is outlined in this manuscript as an example of a pediatric biography writing approach, with pilot survey data from six volunteer biographers presented. Thematic analysis was conducted on qualitative data elicited from volunteer biographers regarding challenges experienced and the perceived benefits of the program. Descriptive information is provided for other aspects of their experience of the Story Project. RESULTS The challenges identified by the volunteer biographers were grouped into seven themes, namely, (1) delays encountered, (2) rapport/interactions with family, (3) family distress, (4) logistics, (5) transcribing-specific issues, (6) identifying themes, and (7) finalizing the biography. The perceived benefits of the Story Project, as perceived by the volunteer biographers, were grouped into four main themes: (1) beneficial processes for families, (2) benefits for the volunteers, (3) intrinsic value of the final product, and (4) beneficial uses of the product. Biographies took between 3-20 months to complete, with most taking 12 months or less. CONCLUSIONS Biography writing is a potentially valuable approach for use with pediatric palliative care patients and their families, with the Story Project being one example of such an intervention, with promising early feasibility data.
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Affiliation(s)
- Sarah Potter
- Department of Palliative Care, Sydney Children’s Hospital, Randwick, NSW 2031, Australia; (S.C.); (T.J.)
- Department of Palliative Care, Children’s Hospital at Westmead, Westmead NSW 2145, Australia
| | - Sandra Coombs
- Department of Palliative Care, Sydney Children’s Hospital, Randwick, NSW 2031, Australia; (S.C.); (T.J.)
- Department of Palliative Care, Children’s Hospital at Westmead, Westmead NSW 2145, Australia
| | - Tiina Jaaniste
- Department of Palliative Care, Sydney Children’s Hospital, Randwick, NSW 2031, Australia; (S.C.); (T.J.)
- School of Clinical Medicine (Paediatrics and Child Health), University of New South Wales, Sydney, NSW 2052, Australia
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Figueroa Gray M, Randall S, Banegas M, Ryan GW, Henrikson NB. Personal legacy and treatment choices for serious illness: a scoping review. BMJ Support Palliat Care 2024; 14:e2302-e2315. [PMID: 38267198 PMCID: PMC11266526 DOI: 10.1136/spcare-2023-004439] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 06/15/2023] [Accepted: 01/12/2024] [Indexed: 01/26/2024]
Abstract
BACKGROUND Legacy-how one hopes to be remembered after death-is an unexplored and important dimension of decision-making for people facing serious illness. OBJECTIVES We conducted a scoping review to answer the following research questions: (1) How do people making treatment choices conceive of legacy? and (2) What treatment choices do people make with legacy in mind? ELIGIBILITY CRITERIA Participants included people facing serious illness who discussed how they wanted to be remembered after their own death, or how they hoped to impact others, as they made treatment choices. Studies in English published between 1990 and 2022 were included. SOURCES OF EVIDENCE We conducted searches in electronic databases including Medline/PubMed, CINAHL, PsycInfo, SocialWork, AnthropologyPlus, Web of Science, ProQuest and EMBASE databases. DATA SYNTHESIS We used an electronic screening tool to screen abstracts and review full-text articles suitable for inclusion. We analysed included articles using Atlas.ti. We constructed tables and narratively synthesised the findings. RESULTS We identified three major intersecting legacy goals that influence choices people facing serious illness make about their treatment and health behaviours, and the types of choices people make with legacy in mind. The three legacy goals are: remembrance of the individual self, remembrance of the social self and impact on others' well-being. CONCLUSIONS We identify the importance of legacy to patient treatment choices. Understanding for whom this construct is important, what types of legacy goals people hold and how those goals impact treatment choices is necessary to provide patient-centred whole-person care to people facing serious illness.
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Affiliation(s)
| | | | - Mateo Banegas
- Radiation Medicine and Applied Science, University of California San Diego, La Jolla, California, USA
| | - Gery W Ryan
- Kaiser Permanente Bernard J Tyson School of Medicine, Pasadena, California, USA
| | - Nora B Henrikson
- Kaiser Permanente Washington Health Research Institute, Seattle, Washington, USA
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Cai Q, Wang H, Zhang Y, Wang L, Zhao L, Xu X. Family participation in dignity interventions for patients with cancer receiving palliative care: a scoping review protocol. BMJ Open 2024; 14:e090338. [PMID: 39675831 PMCID: PMC11647350 DOI: 10.1136/bmjopen-2024-090338] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 06/24/2024] [Accepted: 11/20/2024] [Indexed: 12/17/2024] Open
Abstract
INTRODUCTION The global burden of cancer is escalating, with Asia accounting for over half of cancer-related deaths worldwide. As cancer often diminishes patients' quality of life and sense of dignity, dignity-related interventions have gained prominence in palliative care for patients with cancer. However, a more in-depth exploration of the involvement of families, as the fundamental social units in Confucian Asian cultures, and cultural considerations is currently lacking. This scoping review focuses specifically on patients with cancer receiving palliative care and aims to offer a comprehensive synthesis of the existing evidence on family participatory dignity interventions, addressing the need for a holistic understanding of this emerging field to guide future research and clinical practice. METHODS AND ANALYSIS This scoping review will be meticulously structured according to the five-stage framework established by Arksey and O'Malley, complemented by the scoping review methodology of the Joanna Briggs Institute. Our search will encompass a comprehensive array of databases, including PubMed, Embase, The Cochrane Library, CINAHL, Web of Science, PsycINFO, Scopus, CNKI and Wanfang Data, from their inception up to August 2024, targeting both English and Chinese relevant literature. To ensure a thorough exploration, we will also delve into grey literature via OpenGrey, Google Scholar and citation chaining. This scoping review will include all types of quantitative or mixed methods designs and qualitative studies. We will extract data on study design, sample size, intervention details, outcome measures and any other relevant information. The screening process will be conducted by two independent reviewers, who will meticulously assess the titles and abstracts, followed by a full-text review to select relevant studies. Discrepancies will be resolved through consensus discussions with a third reviewer. Data extraction will be executed using a standardised tool, and the findings will be systematically presented in tabular form with an accompanying narrative to summarise all relevant interventions, their characteristics, outcomes and key findings. ETHICS AND DISSEMINATION Ethical approval for this scoping review is not required, since the methodology merely involves the collection and review of publicly available literature. Our findings will not only be presented and discussed in a peer-reviewed article but also shared at conferences relevant to the topic. TRIAL REGISTRATION Our scoping review protocol has been formally registered with the Open Science Framework. Registration details can be accessed at the provided link: https://osf.io/fyhrm/.
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Affiliation(s)
- Qian Cai
- School of Medical, Jinhua University of Vocational Technology, Jinhua, Zhejiang, China
- Zhejiang University School of Medicine Women's Hospital, Hangzhou, Zhejiang, China
| | - Hangsai Wang
- School of Medical, Jinhua University of Vocational Technology, Jinhua, Zhejiang, China
| | - Yue Zhang
- Zhejiang University School of Medicine Women's Hospital, Hangzhou, Zhejiang, China
| | - Liuqing Wang
- Zhejiang University School of Medicine Women's Hospital, Hangzhou, Zhejiang, China
| | - Le Zhao
- Zhejiang Haining Health School, Haining, Zhejiang, China
| | - Xinfen Xu
- Zhejiang University School of Medicine Women's Hospital, Hangzhou, Zhejiang, China
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Crowe A, Koch MK, Bluck S, Amin T, Thomas L, Fitchett G, Wilkie DJ, Bylund CL. Factors and topics associated with empathic self-disclosure in dignity therapy of cancer patients. PEC INNOVATION 2024; 4:100289. [PMID: 38799259 PMCID: PMC11126944 DOI: 10.1016/j.pecinn.2024.100289] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Grants] [Track Full Text] [Download PDF] [Subscribe] [Scholar Register] [Received: 11/30/2023] [Revised: 03/29/2024] [Accepted: 04/24/2024] [Indexed: 05/29/2024]
Abstract
Objective During Dignity Therapy a trained provider guides a patient to share their life story and legacy. Providers can demonstrate empathy through empathic self-disclosure (ESD), sharing something substantial and personal about themselves in response to the patient. The current study aims to identify the topics of ESDs and determine whether ESD frequency varied by patient and/or provider characteristics. Methods Two coders analyzed 203 audio-recorded, transcribed Dignity Therapy sessions of palliative care patients (M = 65.78 years; SD = 7.43 years, 65.69% women) for ESD. Topic modeling characterized themes of ESD and multilevel modeling examined ESD frequency based on several patient and provider characteristics. Results ESD occurred in 37% of interviews (M = 0.59, SD = 1.21). Topic modeling revealed five main themes: family, memory, school, geographical experiences, and values/beliefs. Multilevel modeling indicated patient-level differences, including greater rates of ESD when patients were men and older. Conclusion ESD seems to be dependent on the context of the patient rather than individual communication style differences. Providers may use ESD in multiple instances, including when similar and different from patients. Innovation This study introduces and defines the novel concept of ESD. It is among the first to examine patient-provider communication during Dignity Therapy, and the first to specifically examine self-disclosure.
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Affiliation(s)
- Alyssa Crowe
- Department of Health Outcomes and Biomedical Informatics, College of Medicine, University of Florida, United States of America
| | - Mary Kate Koch
- Department of Psychology, College of Liberal Arts and Sciences, University of Florida, United States of America
| | - Susan Bluck
- Department of Psychology, College of Liberal Arts and Sciences, University of Florida, United States of America
| | - Tithi Amin
- Department of Health Outcomes and Biomedical Informatics, College of Medicine, University of Florida, United States of America
| | - Lyndsey Thomas
- Department of Health Outcomes and Biomedical Informatics, College of Medicine, University of Florida, United States of America
| | - George Fitchett
- Department of Religion, Health & Human Value, College of Health Sciences, Rush University Medical Center, United States of America
| | - Diana J. Wilkie
- Department of Nursing, College of Medicine, University of Florida, United States of America
| | - Carma L. Bylund
- Department of Health Outcomes and Biomedical Informatics, College of Medicine, University of Florida, United States of America
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14
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Silverstein A, Easton V, Barrows C, Sawyer K, Coughlin R, Mali N, Kessler A, Robinson M, Sirrine E, Spears M, Wrigley J, Baker JN, Kaye EC. Dignity in the Pediatric Population: A Systematic Review. J Pain Symptom Manage 2024; 68:e447-e461. [PMID: 39032678 PMCID: PMC11534546 DOI: 10.1016/j.jpainsymman.2024.07.012] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 04/27/2024] [Revised: 07/10/2024] [Accepted: 07/14/2024] [Indexed: 07/23/2024]
Abstract
CONTEXT Children are a uniquely vulnerable patient population with restricted abilities for self-advocacy and autonomy, risking infringement upon their dignity. Yet the concept of dignity in pediatrics remains underexplored relative to the adult literature and other outcome measures. OBJECTIVES To characterize how dignity is defined, evaluated, and/or measured in pediatrics. METHODS We conducted a systematic review following PRISMA guidelines across the following databases: MEDLINE, Embase, Cumulative Index of Nursing and Allied Health, PsycINFO, Global Health, Social Science Premium Collection, and Dissertation and Theses. We included publications from database inception through April 2023, in English, involving children aged 0-18 years, and prioritizing dignity as a central theme with a focus on defining, evaluating, or measuring dignity. Study descriptions and pertinent characteristics were extracted and synthesized using a predefined form. RESULTS Forty-four articles met inclusion criteria; fewer than half comprised original research (20/44, 45%). Most studies (38/44, 86%) included description of the meaning of dignity, with emergence of salient themes around respect, communication, agency/autonomy, and privacy. Less than half (19/44, 43%) included a measurement or evaluation of dignity; approximately one-third described dignity therapy. More than one-third of publications focused on dignity at end of life (17/44, 39%) and included discussions of palliative medicine and hospice (15/44, 34%). CONCLUSION Relatively few published studies describe dignity in pediatrics. Opportunities exist to broaden scholarship on this topic in partnership with patients, families, and clinicians, with the goal of assessing and strengthening dignity-centered care across the illness course and at the end of life.
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Affiliation(s)
- Allison Silverstein
- Department of Pediatrics (A.S.), Section of Palliative Medicine, University of Colorado School of Medicine, Aurora, Colorado, USA.
| | - Veronica Easton
- Department of Internal Medicine (V.E.), St. Bernards Medical Center, Jonesboro, Arkansas, USA
| | - Cory Barrows
- Section of Hospice and Palliative Medicine (C.B.), University of Tennessee Health Science Center, University, Memphis, Tennessee, USA
| | - Kimberly Sawyer
- Department of Pediatrics (K.S.), Section of Palliative Medicine, Baylor College of Medicine, Houston, Texas, USA
| | - Rachel Coughlin
- Department of Pediatrics (R.C.), Section of Palliative Medicine, Atrium Health Levine Children's Hospital, Charlotte, North Calorina, USA
| | - Nidhi Mali
- Department of Oncology(A.K.,E.C.K.), Division of Quality of Life and Palliative Care, St. Jude Children's Research Hospital, Memphis, Tennessee, USA
| | - Amber Kessler
- Department of Oncology(A.K.,E.C.K.), Division of Quality of Life and Palliative Care, St. Jude Children's Research Hospital, Memphis, Tennessee, USA
| | - Matthew Robinson
- Department of Internal Medicine (M.R.), Baptist Memorial Hospital, Memphis, Tennessee, USA
| | - Erica Sirrine
- Department of Social Work (E.S.), St. Jude Children's Research Hospital, Memphis, Tennessee, USA
| | | | - Jordan Wrigley
- Biomedical Library (J.W.), St. Jude Children's Research Hospital, Memphis, Tennessee, USA
| | - Justin N Baker
- Division of Quality of Life and Pediatric Palliative Care (J.N.B), Stanford University, Palo Alto, California, USA
| | - Erica C Kaye
- Department of Oncology(A.K.,E.C.K.), Division of Quality of Life and Palliative Care, St. Jude Children's Research Hospital, Memphis, Tennessee, USA
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Landerholm A, Miran DM, Tung SC, Braun IM, Amonoo HL, Peteet JR. Clinical Teaching of Demoralization: Challenges and Opportunities. ACADEMIC PSYCHIATRY : THE JOURNAL OF THE AMERICAN ASSOCIATION OF DIRECTORS OF PSYCHIATRIC RESIDENCY TRAINING AND THE ASSOCIATION FOR ACADEMIC PSYCHIATRY 2024; 48:633-636. [PMID: 39044113 DOI: 10.1007/s40596-024-02005-6] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Track Full Text] [Subscribe] [Scholar Register] [Received: 10/04/2023] [Accepted: 06/19/2024] [Indexed: 07/25/2024]
Affiliation(s)
- Angela Landerholm
- Dana Farber Cancer Institute, Boston, MA, USA.
- Harvard Medical School, Boston, MA, USA.
| | - Damien M Miran
- Dana Farber Cancer Institute, Boston, MA, USA
- Harvard Medical School, Boston, MA, USA
| | - Stephanie C Tung
- Dana Farber Cancer Institute, Boston, MA, USA
- Harvard Medical School, Boston, MA, USA
| | - Ilana M Braun
- Dana Farber Cancer Institute, Boston, MA, USA
- Harvard Medical School, Boston, MA, USA
| | - Hermioni L Amonoo
- Dana Farber Cancer Institute, Boston, MA, USA
- Harvard Medical School, Boston, MA, USA
| | - John R Peteet
- Dana Farber Cancer Institute, Boston, MA, USA
- Harvard Medical School, Boston, MA, USA
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16
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Ateş G, Hesse M, Cuhls H. The usage of family audiobooks as a legacy for grieving children - an exploratory quantitative analysis among terminally ill parents and close persons. Support Care Cancer 2024; 32:746. [PMID: 39453514 PMCID: PMC11511742 DOI: 10.1007/s00520-024-08945-x] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 05/24/2024] [Accepted: 10/15/2024] [Indexed: 10/26/2024]
Abstract
BACKGROUND Since 2017, terminally ill parents with dependent children under the age of 18 have been able to record an audiobook for their dependent children. This service allows them to narrate how they would like to be remembered in their voice. The family audiobook is a professionally supported, voluntary, free service that is unique in Germany. There is little research on digital memories for children. The study aims to understand how this service is used and its influence on children through responses of terminally ill parents and close persons. METHODS An anonymous online survey, accessible between September 2023 and November 2023, was conducted among terminally ill parents and their close persons with support from the Family Audiobook Association in Germany. Analyses were carried out using SPSS. RESULTS 186 respondents, 95 terminally ill parents, and 91 close persons completed the online survey. Almost all terminally ill parents felt eased to have recorded a family audiobook. The two groups showed differences in how they used the family audiobook and how often they listened to it. While some children listen to the family audiobook with their bereaved parents or friends, other children are not yet ready for this, according to the open-ended responses of terminally ill parents and close persons. CONCLUSIONS The family audiobook provides a valuable opportunity for terminally ill parents with dependent children under the age of 18 to tell their own biographical story, offer support to the bereaved in remembering, and preserve the voice of the deceased for the children. In addition, this approach could help healthcare professionals to reduce the stress associated with providing end-of-life care for terminally ill parents.
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Affiliation(s)
- Gülay Ateş
- Institute for Digitalization and General Medicine, Center for Rare Diseases Aachen (ZSEA), Medical Faculty, RWTH Aachen University, Pauwelsstr. 30, 52074, Aachen, Germany.
| | - Michaela Hesse
- Institute for Digitalization and General Medicine, Center for Rare Diseases Aachen (ZSEA), Medical Faculty, RWTH Aachen University, Pauwelsstr. 30, 52074, Aachen, Germany
| | - Henning Cuhls
- Department of Palliative Medicine, University Hospital Bonn, Venusberg Campus 1, 53127, Bonn, Germany
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Koch MK, Maggiore S, Bylund CL, Chochinov HM, Kittlelson S, Wilkie D, Bluck S. Communion supports dignity for older adults with serious cancer: Quantitative findings from dignity therapy intervention. Palliat Support Care 2024:1-5. [PMID: 39439081 DOI: 10.1017/s1478951524001329] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 10/25/2024]
Abstract
OBJECTIVES Patient dignity is a key concern during end-of-life care. Dignity Therapy is a person-centered intervention that has been found to support patient dignity interviews focused on narrating patients' life stories and legacies. However, mechanisms that may affect utility of the Dignity Therapy have been little studied. In this study, we evaluate whether the extent to which patients are more communal in their interviews acts as a mechanism for increased patient dignity. METHODS We analyzed the written transcripts from Dignity Therapy interviews with 203 patients with cancer over the age of 55 receiving outpatient palliative care (M = 65.80 years; SD = 7.45 years, Range = 55-88 years; 66% women). Interviews followed core questions asking patients about their life story and legacy. We used content-coding to evaluate the level of communion narrated in each interview, and mediation analyses to determine whether communion affected dignity impact. RESULTS Mediation analyses indicated that the extent to which patients narrated communion in their interview had a significant direct effect on post-test Dignity Impact. Communion partially mediated the effect of pre-test on post-test Dignity Impact. For both the life story and legacy segments of the session, narrating communion had a direct effect on post-test Dignity Impact. SIGNIFICANCE OF RESULTS Narrating communion serves as a mechanism for enhancing patient dignity during Dignity Therapy. Providers may consider explicitly guiding patients to engage in, elaborate on, communal narration to enhance therapeutic utility. In addition, encouraging patients with advanced illness to positively reflect on relationships in life may improve patient dignity outcomes in palliative and end-of-life care.
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Affiliation(s)
- Mary Kate Koch
- Department of Psychology, University of Florida, Gainesville, FL, USA
| | - Sophia Maggiore
- Department of Psychology, University of Florida, Gainesville, FL, USA
| | - Carma L Bylund
- Department of Psychology, University of Florida, Gainesville, FL, USA
| | | | - Sheri Kittlelson
- Department of Psychology, University of Florida, Gainesville, FL, USA
| | - Diana Wilkie
- Department of Psychology, University of Florida, Gainesville, FL, USA
| | - Susan Bluck
- Department of Psychology, University of Florida, Gainesville, FL, USA
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18
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Lévai T, Lázár G, Krajinovic E, Devosa I, Látos M. Examining illness narratives in the context of the postoperative psychological state: A mixed-methods study of emotion-focused illness narrative. Biopsychosoc Med 2024; 18:21. [PMID: 39395999 PMCID: PMC11470729 DOI: 10.1186/s13030-024-00318-4] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 04/26/2024] [Accepted: 09/26/2024] [Indexed: 10/14/2024] Open
Affiliation(s)
- Tünde Lévai
- Department of Surgery, Albert Szent-Györgyi Health Centre, University of Szeged, Szeged, Hungary.
| | - György Lázár
- Department of Surgery, Albert Szent-Györgyi Health Centre, University of Szeged, Szeged, Hungary
| | - Erna Krajinovic
- Department of Surgery, Albert Szent-Györgyi Health Centre, University of Szeged, Szeged, Hungary
| | - Iván Devosa
- Institute of Pedagogy, Department of Art, Physical Education and Lifestyle, Károli Gáspár University of the Reformed Church, Budapest, Hungary
| | - Melinda Látos
- Department of Surgery, Albert Szent-Györgyi Health Centre, University of Szeged, Szeged, Hungary
- Institute of Psychology, Department of Personality, Clinical and Health Psychology, University of Szeged, Szeged, Hungary
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Jaman-Mewes P, Caetano da Silva de Oliveira M, Regina Mazotti M, Salvetti MDG. Spiritual care interventions for palliative care patients: A scoping review. Palliat Support Care 2024; 22:1449-1468. [PMID: 39136153 DOI: 10.1017/s1478951524000592] [Citation(s) in RCA: 3] [Impact Index Per Article: 3.0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 04/10/2025]
Abstract
OBJECTIVES To identify and map spiritual care interventions to address spiritual needs and alleviate suffering of patients in the context of palliative care. METHODS A scoping review using the PRISMA ScR (Preferred Reporting Items for Systematic reviews and Meta-Analyses extension for Scoping Reviews) checklist was conducted according to the JBI (Joanna Briggs Institute) guidelines. The search was conducted from October 2022 to January 2023 using 9 electronic databases and gray literature. Studies on spiritual care interventions in palliative care were included. Disagreements between the 2 reviewers were resolved by discussion or a third reviewer. RESULTS A total of 47 studies were included in this review. All selected articles were published between 2003 and 2022. In total, 8 types of spiritual care interventions were identified to assess spiritual needs and/or alleviate suffering: conversations between the patient and a team member, religious practice interventions, therapeutic presence, guided music therapy, multidisciplinary interventions, guided meditation, art therapy, and combined interventions with multiple components such as music, art, integrative therapy, and reflection. SIGNIFICANCE OF RESULTS Our study identified few spiritual care interventions in palliative care worldwide. Although this review noted a gradual increase in studies, there is a need to improve the reporting quality of spiritual care interventions, so they can be replicated in other contexts. The different interventions identified in this review can be a contribution to palliative care teams as they provide a basis for what is currently being done internationally to alleviate suffering in palliative care and what can be improved. No patient or public contribution was required to design or undertake this methodological research.
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Affiliation(s)
- Paula Jaman-Mewes
- Facultad de Enfermería y Obstetricia, Escuela de Enfermería, Universidad de los Andes, Chile
- Escola de Enfermagem, Universidade de São Paulo, São Paulo, Brazil
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20
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Bennemann ACK, Paiva CE, Julião M, Chochinov HM, Marques C, Costa RFA, Oliveira LC, Uchida Miwa M, Trevizan FB, Valentino TCDO, Paiva BSR. Translation and cross-cultural adaptation of the Posthumous Dignity Therapy Schedule of Questions to Brazilian Portuguese. Palliat Support Care 2024; 22:1384-1393. [PMID: 39401981 DOI: 10.1017/s1478951524001408] [Citation(s) in RCA: 1] [Impact Index Per Article: 1.0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 01/16/2025]
Abstract
OBJECTIVES Dignity Therapy (DT) is a brief form of psychotherapy that helps people with life-threatening illnesses and their loved ones cope with emotional pain and demoralization. Unfortunately, not everyone has the opportunity to receive DT during their lifetime. Posthumous Dignity Therapy (PDT) was then devised to be administered to bereaved family members. However, PDT has not yet been validated or studied in the specific cultural and linguistic context of Portuguese-Brazilians. This study aims to fill this gap by validating PDT for the Portuguese (Brazilian) context. METHODS Using Beaton's methodology, including the processes of translation, synthesis, back-translation, evaluation by an expert committee, and pre-testing, the PDT Schedule of Questions underwent validation and cultural adaptation. The research was conducted in a Palliative Care Unit at a tertiary cancer hospital in Brazil. RESULTS The questionnaire was translated, back-translated, and evaluated by the panel of experts, obtaining a Content Validity Index of 0.97. During the pretest phase, it was observed that the participant's interview method needed to be changed from remote (telephone or videoconference) to in-person. Additionally, it was necessary to modify some terms related to death and dying, as they caused discomfort to the participants. As a result of this process, the PDT was modified, and adapted to the Brazilian cultural and linguistic reality. SIGNIFICANCE OF RESULTS This validation study will be significant for future DT research from the caregivers' perspective and for projects aiming to implement this therapeutic modality in palliative care units, in addition to helping participants remember their loved ones better by providing a tangible legacy document that assists them emotionally and materially in coping with the grieving process.
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Affiliation(s)
- Ana Carolina Kotinda Bennemann
- Palliative Care Unit, Londrina's Cancer Hospital, Londrina, Brazil
- Barretos Cancer Hospital, Research Group on Palliative Care and Health-Related Quality of Life, Barretos, Brazil
| | - Carlos Eduardo Paiva
- Barretos Cancer Hospital, Research Group on Palliative Care and Health-Related Quality of Life, Barretos, Brazil
- Department of Clinical Oncology, Breast and Gynecology Division, Barretos Cancer Hospital, Barretos, Brazil
| | - Miguel Julião
- Equipa Comunitária de Suporte em Cuidados Paliativos de Sintra, ULS Amadora/Sintra, Portugal
| | - Harvey Max Chochinov
- Department of Psychiatry, Cancer Care Manitoba Research Institute, CancerCare Manitoba, Manitoba, Canada
| | - Céline Marques
- Barretos School of Health Sciences, Dr. Paulo Prata - FACISB, Barretos, Brazil
| | | | | | - Michelle Uchida Miwa
- Barretos Cancer Hospital, Research Group on Palliative Care and Health-Related Quality of Life, Barretos, Brazil
- Palliative Care Unit, Barretos Cancer Hospital, Barretos, Brazil
| | - Fulvio Bergamo Trevizan
- Barretos Cancer Hospital, Research Group on Palliative Care and Health-Related Quality of Life, Barretos, Brazil
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Symons X, Rhee J, Tanous A, Balboni T, VanderWeele TJ. Flourishing at the end of life. THEORETICAL MEDICINE AND BIOETHICS 2024; 45:401-425. [PMID: 39162937 PMCID: PMC11358345 DOI: 10.1007/s11017-024-09679-x] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Subscribe] [Scholar Register] [Accepted: 06/19/2024] [Indexed: 08/21/2024]
Abstract
Flourishing is an increasingly common construct employed in the study of human wellbeing. But its appropriateness as a framework of wellbeing at certain stages of life is contested. In this paper, we consider to what extent it is possible for someone to flourish at the end of life. People with terminal illness often experience significant and protracted pain and suffering especially when they opt for treatments that prolong life. Certain aspects of human goods, however, that are plausibly constitutive of flourishing-such as meaning and purpose, deep personal relationships, and character and virtue-can be uniquely realised when life is ending. We argue that there is a qualified sense in which one can flourish at the end of life but that one must make important modifications to the criteria implicit in conventional conceptions of flourishing. We close with a discussion of the empirical assessment of wellbeing at the end of life and explore the possibility of introducing a flourishing measure in palliative care practice.
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Affiliation(s)
- Xavier Symons
- Human Flourishing Program in the Institute for Quantitative Social Science, Harvard University, Cambridge, MA, USA.
- Plunkett Centre for Ethics, The Australian Catholic University, Sydney, NSW, Australia.
| | - John Rhee
- Center for Neuro-oncology, Department of Medical Oncology, Dana Farber Cancer Institute, Boston, MA, USA
- Division of Adult Palliative Care, Department of Psychosocial Oncology & Palliative Care, Dana Faber Cancer Institute, Boston, MA, USA
- Department of Neurology, Harvard Medical School, Boston, MA, USA
| | - Anthony Tanous
- School of Medicine, University of New South Wales, Sydney, NSW, Australia
| | - Tracy Balboni
- Division of Adult Palliative Care, Department of Psychosocial Oncology & Palliative Care, Dana Faber Cancer Institute, Boston, MA, USA
| | - Tyler J VanderWeele
- Human Flourishing Program in the Institute for Quantitative Social Science, Harvard University, Cambridge, MA, USA
- Department of Epidemiology, TH Chan School of Public Health, Harvard University, Cambridge, MA, USA
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Seiler A, Evstigneev SR, Hepp Z, Hertler C, Peng-Keller S, Blum D. [Loneliness at the end of life]. Bundesgesundheitsblatt Gesundheitsforschung Gesundheitsschutz 2024; 67:1144-1151. [PMID: 39177839 PMCID: PMC11424728 DOI: 10.1007/s00103-024-03943-0] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 04/15/2024] [Accepted: 08/08/2024] [Indexed: 08/24/2024]
Abstract
Advanced incurable diseases are often accompanied by numerous losses and burdens as the disease progresses, leading to a loss of autonomy, self-determination, and dignity for those affected, all of which can subsequently promote feelings of loneliness at the end of life. Declining health, increasing symptom burden, loss of social roles, and the fear of death and dying are among the key risk factors for loneliness towards the end of life. In this article, we provide an overview of the different dimensions of loneliness experienced at the end of life. We discuss existential loneliness alongside emotional and social loneliness, explore causes and health implications of loneliness at the end of life, suggest diagnostic tools for assessing loneliness, and finally provide recommendations for addressing emotional, social, and existential loneliness at the end of life. The loneliness of caregivers is also discussed. We suggest that addressing social and emotional loneliness early in the course of a terminal illness is crucial. Palliative, psychological, and spiritual support can strengthen interpersonal relationships, foster a sense of meaning and purpose, and alleviate the adverse effects of loneliness on mental and physical health as well as quality of life. In contrast, existential loneliness is considered an expression of profound emotional maturity and can offer opportunities for inner growth, contributing to a more refined sense of self while reinforcing identity, dignity, and transcendence at the end of life.
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Affiliation(s)
- Annina Seiler
- Klinik für Radio-Onkologie, Kompetenzzentrum Palliative Care, Universitätsspital Zürich und Universität Zürich, Rämistrasse 100, 8091, Zürich, Schweiz.
| | - Sophia Rose Evstigneev
- Klinik für Radio-Onkologie, Kompetenzzentrum Palliative Care, Universitätsspital Zürich und Universität Zürich, Rämistrasse 100, 8091, Zürich, Schweiz
| | - Zehra Hepp
- Klinik für Radio-Onkologie, Kompetenzzentrum Palliative Care, Universitätsspital Zürich und Universität Zürich, Rämistrasse 100, 8091, Zürich, Schweiz
| | - Caroline Hertler
- Klinik für Radio-Onkologie, Kompetenzzentrum Palliative Care, Universitätsspital Zürich und Universität Zürich, Rämistrasse 100, 8091, Zürich, Schweiz
| | - Simon Peng-Keller
- Professur für Spiritual Care, Theologische und Religionswissenschaftliche Fakultät, Universität Zürich, Zürich, Schweiz
| | - David Blum
- Klinik für Radio-Onkologie, Kompetenzzentrum Palliative Care, Universitätsspital Zürich und Universität Zürich, Rämistrasse 100, 8091, Zürich, Schweiz
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Whitlow ML, Gilmer MJ, Dietrich MS, Cho E, Akard TF. Digital Stories Created by Children With Advanced Cancer. JOURNAL OF PEDIATRIC HEMATOLOGY/ONCOLOGY NURSING 2024; 41:336-348. [PMID: 39257031 DOI: 10.1177/27527530241267296] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Subscribe] [Scholar Register] [Indexed: 09/12/2024]
Abstract
Background: Legacy building is a priority for pediatric oncology. Storytelling is one strategy to help children document their legacies. Understanding story content would advance knowledge of how children want to be remembered but this has yet to be explored. This study explored content of digital stories created by children with advanced cancer. Method: Facebook advertisements were used to recruit families of children (7-17) with relapsed/refractory cancer to participate in a randomized controlled trial testing a legacy intervention through storytelling. Parent-child dyads (N = 150) were randomly assigned to an intervention or usual care group. A web program guided children to answer legacy questions and upload photographs, movies, and music. Families received the final digital stories. Experienced qualitative coders developed a hierarchical coding system to identify major categories/subcategories within 78 stories. Results: Stories included 1,516 unique story entries, including text, photographs, and movies. Two major categories emerged from the data: (a) story entry medium and (b) story content. Photographs frequently reflected people, objects, pets, and places while text often described personal preferences, goals, dreams, and other people. The story content overall included references to (a) people, (b) setting/location, (c) cancer, (d) objects/activities, and (e) expression of emotions/beliefs. Exemplar quotes, counts, and frequencies for each category are reported. Discussion: Children documented their legacies through stories that emphasized the value of family relationships and children's desires to be known for personal traits/preferences. Children chose to include cancer in their stories, indicating that cancer is a part of how children perceive their legacies. Registration Number: ClinicalTrials.gov NCT04059393.
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Affiliation(s)
| | - Mary Jo Gilmer
- School of Nursing, Vanderbilt University, Nashville, TN, USA
| | - Mary S Dietrich
- School of Nursing, Vanderbilt University, Nashville, TN, USA
| | - Eunji Cho
- Connell School of Nursing, Boston College, Chestnut Hill, MA, USA
| | - Terrah Foster Akard
- School of Nursing, Vanderbilt University, Nashville, TN, USA
- Graduate School, Vanderbilt University, Nashville, TN, USA
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24
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Zhang X, Zhang D, Liu Y, Tian Y, Yu F, Cao Y, Su Y. The effects of psychological interventions on suicide for cancer patients: a systematic review and network meta-analysis. PSYCHOL HEALTH MED 2024; 29:1377-1399. [PMID: 38785256 DOI: 10.1080/13548506.2024.2356026] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 07/05/2023] [Accepted: 05/10/2024] [Indexed: 05/25/2024]
Abstract
Numerous psychological interventions are available for suicidal and death ideation (SDI) and suicidal behavior among cancer patients. To identify the optimal psychological interventions for reducing SDI and suicidal behavior in cancer patients. However, it remains unclear which psychological intervention is the most effective. We performed a pairwise and network meta-analysis by searching seven databases from the date of inception until 8 April 2022. An important focus of this network meta-analysis was the comparison of the effects of various psychological interventions on the reduction of SDI and suicidal behavior among cancer patients. For determining efficacy, we used standardized mean differences (SMDs) and 95% confidence intervals (CIs). Besides, a pairwise meta-analysis, inconsistency test, network meta-analysis, the surface under the cumulative rankings curve (SUCRA), comparison-adjusted funnel plot, subgroup analysis, and sensitivity analysis were also carried out. A total of 8 studies involving 1,350 patients were searched in this study. It showed that empathy therapy (SUCRA = 95.3%) has the best effect among the six interventions. Comprehensive psychological intervention (SUCRA = 77.6%) was ranked in the top two positions, followed by meaning-centered therapy (SUCRA = 40.7%). Comparison-adjusted funnel plots revealed no significant publication bias. In addition, our conclusions have not changed significantly after the sensitivity analysis. In this network meta-analysis, empathy therapy was identified as the optimal choice for reducing SDI and suicidal behaviors in cancer patients. Further multi-center and high-quality RCT studies should be conducted to make our conclusion more rigorous.
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Affiliation(s)
- Xinyue Zhang
- School of Nursing & Rehabilitation, Shandong University, Jinan, Shandong, China
| | - Dan Zhang
- Department of Medical Psychology and Ethics, School of Basic Medical Sciences, Shandong University, Jinan, Shandong, China
| | - Yuqi Liu
- School of Nursing & Rehabilitation, Shandong University, Jinan, Shandong, China
| | - Yinong Tian
- School of Foreign Languages and Literature, Shandong University, Jinan, Shandong, China
| | - Feiping Yu
- School of Nursing & Rehabilitation, Shandong University, Jinan, Shandong, China
| | - Yingjuan Cao
- School of Nursing & Rehabilitation, Shandong University, Jinan, Shandong, China
- Nursing Theory & Practice Innovation Research Center, Shandong University, Jinan, Shandong, China
- Department of Nursing, Qilu Hospital, Cheeloo College of Medicine, Shandong University, Jinan, Shandong, China
| | - Yonggang Su
- School of Nursing & Rehabilitation, Shandong University, Jinan, Shandong, China
- Department of Medical Psychology and Ethics, School of Basic Medical Sciences, Shandong University, Jinan, Shandong, China
- School of Foreign Languages and Literature, Shandong University, Jinan, Shandong, China
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25
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Lin J, Guo Q, Zhou X, Li H, Cai S. Development of the pediatric family-based dignity therapy protocol for terminally ill children (ages 7-18) and their families: A mixed-methods study. Palliat Support Care 2024; 22:783-791. [PMID: 38482668 DOI: 10.1017/s1478951523001839] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/01/2024]
Abstract
OBJECTIVES Dignity therapy (DT) is well-established in adults, and it might potentially benefit the younger population. This study aims to develop a pediatric family-based dignity therapy (P-FBDT) protocol for terminally ill children and their families. METHODS A parallel mixed-methods design was used. The P-FBDT protocol was developed based on the adult DT, and meanwhile by taking children-specific dignity characteristics and Chinese family-oriented culture into consideration. The protocol was then evaluated and modified based on the quantitative and qualitative feedback from 2-round surveys of 14 pediatric oncology or pediatric palliative care experts. RESULTS The P-FBDT involves terminally ill children and their families in meaningful interactions including a series of conversations and creative activities, which will be recorded and then edited into a document-based generativity entity. The P-FBDT protocol was recognized as highly reasonable and the P-FBDT interview guide was endorsed as important, acceptable, clear, comprehensive, and suitable to be used in pediatric palliative care practice in Chinese culture (>90%). Potential benefits, possible challenges, and practical considerations of the P-FBDT were also proposed. SIGNIFICANCE OF RESULTS The P-FBDT was perceived to be potentially beneficial to terminally ill children and their families by engaging in a series of meaningful family interactions and creating a lasting memento to be preserved. The protocol needs to be pilot tested among terminally ill children and families for feasibility and potential efficacy in practice.
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Affiliation(s)
- Junyi Lin
- School of Nursing, Capital Medical University, Beijing, China
| | - Qiaohong Guo
- School of Nursing, Capital Medical University, Beijing, China
| | - Xuan Zhou
- Beijing Key Laboratory of Pediatric Hematology Oncology, Capital Medical University, National Center for Children's Health, Beijing, China
- National Key Discipline of Pediatrics (Capital Medical University), Capital Medical University, National Center for Children's Health, Beijing, China
- Key Laboratory of Major Diseases in Children, Ministry of Education, Capital Medical University, National Center for Children's Health, Beijing, China
- Hematology Center, Beijing Children's Hospital, Capital Medical University, National Center for Children's Health, Beijing, China
| | - Huijun Li
- Department of Nursing, Beijing Children's Hospital, Capital Medical University, National Center for Children's Health, Beijing, China
| | - Siyu Cai
- Center for Clinical Epidemiology and Evidence-based Medicine, Beijing Children' s Hospital, Capital Medical University, National Center for Children's Health, Beijing, China
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26
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Mroz EL, Bluck S. Narrating Final Memories From Spousal Loss: The Role of Place and Quality of Death. Am J Hosp Palliat Care 2024; 41:934-941. [PMID: 37776113 PMCID: PMC10980595 DOI: 10.1177/10499091231204965] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 10/01/2023] Open
Abstract
Objective: Personal memories of the death of a spouse can guide bereavement adjustment. Place of death and quality of death are end-of-life factors that are likely to influence death experiences and formation of subsequent personal memories. The current study employs narrative content-analysis to examine how place and quality of death relate to affective sequences present in older adults' final memories from the death of their spouse. Method: Based on power analyses, 53 older adults were recruited and completed a Final Memory Interview. They also reported place of spouse's death (ie, in hospital, out of hospital) and quality of death across four subscales. Final memory narratives were reliably content-analyzed (interrater agreements >.70), revealing positive and negative affective sequences, including: redemption, contamination, positive stability, and negative stability. Findings: Experiencing the death of a spouse in hospital was related to narrating final memories with contamination. In terms of quality of death, reporting a less comforting social environment at time of death was related to the presence of redemption in final memories. Reporting that one's spouse received appropriate medical care related to narrating memories that showed positive stability. Conclusions: Final memories are carried with the bereaved long after their loss. Positive final memories appear to stem from witnessing a comfortable, medically appropriate death outside of a hospital setting. End-of-life 'that is' between care and aligned with patients' values for place and treatment may be critical for spouses' formation of constructive final memories and bereavement adjustment.
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Affiliation(s)
- Emily L. Mroz
- Department of Internal Medicine, Yale University, New Haven, CT, USA
- Department of Psychology, University of Florida, Gainesville, FL, USA
| | - Susan Bluck
- Department of Psychology, University of Florida, Gainesville, FL, USA
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27
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Collins EF, Galloway-Salazar Q, Johnson E, Blechman J, Rush M, Clare E, Johnson A, Sethi A, Rosa WE, Izumi S. Top Ten Tips Palliative Care Clinicians Should Know About End-of-Life Doulas. J Palliat Med 2024. [PMID: 39069890 DOI: 10.1089/jpm.2024.0261] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 07/30/2024] Open
Abstract
Palliative care has made great strides in improving the lives of people living with serious illness, with an empirical premise for increasing quality, and sometimes quantity of life. Yet in some cases, there exist gaps that impede the ability of palliative care clinicians to truly advocate, procure, and provide the comprehensive services needed for patients, family caregivers, and communities, particularly in the contexts of caring for marginalized populations and working in under-resourced practice settings. The end-of-life doula role has emerged over the last decade and the availability of trained doulas in the community has burgeoned. An end-of-life doula is a nonmedical, holistic support person who provides education, guidance, emotional, spiritual, and practical support to persons and families navigating serious and terminal illness, ideally early in the disease process, throughout the time surrounding death, and during bereavement. A pervasive Western culture of avoiding the subject of death means that we, as a society, often do not know or remember how to navigate the journey of end of life in a way that is caring, compassionate, skilled, holistic, and centered on the needs and worldview of the dying one. The ten tips provided here can guide palliative care clinicians to leverage collaboration with trusted, community-based end-of-life doulas to ensure comprehensive and people-centered palliative care.
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Affiliation(s)
| | | | | | | | | | - Emma Clare
- End-of-Life Doula International Research Group, End-of-Life Doula UK, University of Derby, York, United Kingdom
| | - Ashley Johnson
- National End-of-life Doula Alliance, Orlando, Florida, USA
| | - Aditi Sethi
- Center for Conscious Living and Dying, Asheville, North Carolina, USA
| | - William E Rosa
- Department of Psychiatry and Behavioral Sciences, Memorial Sloan Kettering Cancer Center, New York, New York, USA
| | - Seiko Izumi
- School of Nursing, Oregon Health and Science University, Portland, Oregon, USA
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28
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Gärtner HS, Blix BH, Raunkiær M, Timm H. "The Most Fantastic Thing is Coming Here as an Individual and Going to Bed as Part of a Group": Participants' Experiences From a Residential Course, for People With Advanced Cancer. OMEGA-JOURNAL OF DEATH AND DYING 2024:302228241264876. [PMID: 39046069 DOI: 10.1177/00302228241264876] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 07/25/2024]
Abstract
People who suffer from advanced cancer may experience a loss of ability to participate in everyday life and meaningful activities, challenging their sense of identity and social relations. Social support in patient-to-patient interactions and the sharing of experiences with people in similar situations may help alleviate distress. This article is based on an ethnographic field study carried out in relation to three residential narrative courses, which included 36 persons with advanced cancer. In this study, we aimed to explore whether the courses were perceived as significant by the participants and, if so, in what ways. The field work included 185 hr of observations, six focus group interviews and nine individual interviews. The data were analyzed using an abductive thematic approach. Our findings indicate that the residential courses were generally experienced as meaningful and that in particular the setting, the community, and gaining hope were experienced as significant.
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Affiliation(s)
| | - Bodil H Blix
- Department of Health and Care Sciences, UiT The Arctic University of Norway, Tromsø, Norway
- Faculty of Education, Arts and Sports, Western Norway University of Applied Sciences, Bergen, Norway
| | - Mette Raunkiær
- Head of Research, REHPA, The Danish Knowledge Centre for Rehabilitation and Palliative Care, Department of Clinical Research, University of Southern Denmark, Odense University Hospital, Copenhagen, Denmark
| | - Helle Timm
- National Institute of Public Health, University of Southern Denmark, Copenhagen, Denmark
- UCSF - Center for Health Research, Copenhagen University Hospital, Copenhagen, Denmark
- Centre for Health Sciences, University of the Faroe Islands, Tórshavn, Faroe Islands
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29
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Zhang S, Song H, Liu Q, Zhao M, Bai X, Ding Y, Chen L, Yin H. The effectiveness of brief reminiscence-based psychosocial interventions for cancer patients: A systematic review and meta-analysis. J Clin Nurs 2024; 33:2775-2796. [PMID: 38519834 DOI: 10.1111/jocn.17137] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 08/31/2023] [Revised: 12/05/2023] [Accepted: 03/14/2024] [Indexed: 03/25/2024]
Abstract
AIM To determine the effectiveness of brief reminiscence-based psychosocial interventions in alleviating psychological distress in cancer patients. BACKGROUND Cancer patients suffer tremendous psycho-spiritual pain, which affects their quality of life. Brief reminiscence-based psychosocial interventions have demonstrated positive effects on the mental health of cancer patients; however, the efficacy of these interventions has been inconsistent. DESIGN A systematic review and meta-analysis. METHODS This review was conducted and reported in accordance with the PRISMA 2020 checklist provided by the EQUATOR network. The Cochrane Library, Web of Science, PsycINFO, PubMed, Embase, CINAHL and Scopus databases were systematically searched from inception to 27 November 2022 to identify randomised controlled trials (RCTs) published in English. RESULTS Twenty studies involving 1744 cancer participants were included. The meta-analysis showed statistically significant effects of brief reminiscence-based psychosocial interventions on hope, anxiety and depression at post-intervention. A separate analysis revealed that brief reminiscence-based psychosocial interventions had a sustainable effect on hope, spiritual well-being, anxiety and depression at 1 month after the intervention. However, no statistically significant effect on quality of life was found in our study either immediately after the intervention or at 1 month. CONCLUSIONS Brief reminiscence-based psychosocial interventions can significantly reduce anxiety and depressive symptoms and improve hope and spiritual well-being in cancer patients. RELEVANCE TO CLINICAL PRACTICE This study further supports that brief reminiscence-based psychosocial interventions should be incorporated into the routine care of cancer patients to address their psychosocial distress. PATIENT OR PUBLIC CONTRIBUTION All authors of this article contributed to the study conception and design. All authors of the included studies provided original data for this paper.
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Affiliation(s)
- Sitao Zhang
- Jilin University School of Nursing, Changchun, China
| | - Huali Song
- Bethune First Hospital of Jilin University, Changchun, China
| | - Qian Liu
- Jilin University School of Nursing, Changchun, China
| | - Mingzhu Zhao
- Jilin University School of Nursing, Changchun, China
| | - Xuechun Bai
- Jilin University School of Nursing, Changchun, China
| | - Yiwen Ding
- Jilin University School of Nursing, Changchun, China
| | - Li Chen
- Jilin University School of Nursing, Changchun, China
| | - Huiru Yin
- Jilin University School of Nursing, Changchun, China
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30
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Sailian SD, Salifu Y, Preston N. Dignity enhanced through faith & family support in palliative care: a qualitative study. BMC Palliat Care 2024; 23:142. [PMID: 38849809 PMCID: PMC11157805 DOI: 10.1186/s12904-024-01478-4] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 10/12/2023] [Accepted: 05/30/2024] [Indexed: 06/09/2024] Open
Abstract
BACKGROUND Dignity is integral to palliative care. Illness can diminish it, causing hopelessness and the wish to hasten death. Yet, dignity is a complex multidimensional phenomenon, influenced by values and context. Understanding its varying interpretations can inform practice and policy. The aim of the study is to explore the understanding of dignity in adult patients with palliative care needs from a Lebanese perspective and how it is preserved during illness and while receiving health services. DESIGN Qualitative interview study underpinned with a social constructionist lens. Fourteen patients recruited from home-based hospice and outpatient clinics in Lebanon. Data analysed using reflexive thematic analysis. RESULTS Four themes were developed across all the interviews: (a) Dignity anchored through faith in God and religious practices; (b) Family support in maintaining physical, psychological wellbeing, and social connectedness; (c) Physical fitness, mental acuity, and healthy appearance through which patients may escape the stigma of disease, (d) accessible, equitable, and compassionate healthcare. DISCUSSION Dignity is elusive and difficult to define but faith and religious beliefs play a significant contribution in this study. For the participants, illness is seen as a natural part of life that does not necessarily diminish dignity, but it is the illness related changes that potentially affect dignity. Findings show the importance of family and children in preserving dignity during illness and how their active presence provide a sense of pride and identity. Participants aspired to restore physical, social, and mental well-being to reclaim their dignity and normalize their lives. Challenges related to physical appearance, memory loss, vitality, and social stigma associated with illness diminished dignity. Accessible, equitable and compassionate healthcare services are also crucial in preserving dignity. Participants valued clear communication, respect, and empathy from healthcare providers and identified affordability of care essential for maintaining dignity. CONCLUSION Faith in God, and strong family ties are dominant elements to maintaining dignity in the Lebanese context. Relational connectedness with family, children or God is also a need in maintaining dignity in other communal countries with variations in emphasis. The study indicates that religious and cultural context shapes the needs and perceptions of dignity during illness. These findings are likely to be transferable to many Middle Eastern countries but also countries with strong religious and family ties globally.
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Affiliation(s)
- Silva Dakessian Sailian
- American University of Beirut, Hariri School of Nursing, Riad El Solh, PO Box: 11 0236, Beirut, 1107, 2020, Lebanon.
| | - Yakubu Salifu
- International Observatory on End-of-Life Care, Division of Health Research, Faculty of Health and Medicine, Lancaster University, Sir John Fisher Drive, Lancaster, LA1 4YW, UK
| | - Nancy Preston
- International Observatory on End-of-Life Care, Division of Health Research, Faculty of Health and Medicine, Lancaster University, Sir John Fisher Drive, Lancaster, LA1 4YW, UK
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31
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Nagata K, Tanaka K. Components of spirituality in older adults: A phenomenological study through interviews based on dignity therapy. Scand J Caring Sci 2024; 38:476-486. [PMID: 38454305 DOI: 10.1111/scs.13254] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 05/25/2023] [Revised: 01/15/2024] [Accepted: 02/24/2024] [Indexed: 03/09/2024]
Abstract
AIM A key perspective in examining dignity, which is important for older adults, is spirituality. Therefore, this study aimed to identify the components of spirituality in older adults through interviews based on dignity therapy (DT). METHODOLOGICAL DESIGN AND JUSTIFICATION Colaizzi's descriptive phenomenology was applied to understand experiences rooted in the life world of older adults from their own perspective. ETHICAL ISSUES AND APPROVAL This study was approved by the ethical review committee of the author's university. All participants provided consent to participate. RESEARCH METHODS Semi-structured interviews based on DT were conducted with 11 community-dwelling adults aged 65 years or older who were using some form of medical or social services. The interviews were transcribed, and the text was analysed based on Colaizzi's phenomenological method. RESULTS Four themes were identified as components of spirituality in older adults: trauma, being silent about hard experiences, forming connections and taking on challenges and discovering one's own spirit. The participants felt a sense of helplessness and frustration as they dealt with traumatic events. Feelings of shame, guilt and/or resignation prevented them from talking about the distress they were experiencing, but they were able to move forward after receiving emotional support and having opportunities to share with others. These processes led to the discovery of a new self. STUDY LIMITATIONS This study assessed the experiences of older adults in Japan and may therefore have been influenced by the social background and culture of Japan. Future research should target older adults from a variety of social backgrounds as well as those with specific health conditions. CONCLUSION The findings suggest the importance of creating opportunities for healthcare professionals as well as family, friends and community members to help older adults reflect on their lives and talk about their accomplishments and unresolved issues. Doing so should help older adults maintain their dignity while remaining aware of their mortality.
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Affiliation(s)
- Kyoko Nagata
- Faculty of Health Sciences, Institute of Medical, Pharmaceutical and Health Sciences, Kanazawa University, Kanazawa, Japan
| | - Koji Tanaka
- Faculty of Health Sciences, Institute of Medical, Pharmaceutical and Health Sciences, Kanazawa University, Kanazawa, Japan
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Grassi L, Nanni MG, Riba M, Folesani F. Dignity in Medicine: Definition, Assessment and Therapy. Curr Psychiatry Rep 2024; 26:273-293. [PMID: 38809393 PMCID: PMC11147872 DOI: 10.1007/s11920-024-01506-3] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Accepted: 03/28/2024] [Indexed: 05/30/2024]
Abstract
PURPOSE OF REVIEW Over the last 20 years, dignity and dignity-conserving care have become the center of investigation, in many areas of medicine, including palliative care, oncology, neurology, geriatrics, and psychiatry. We summarized peer-reviewed literature and examined the definition, conceptualization of dignity, potential problems, and suggested interventions. RECENT FINDINGS We performed a review utilizing several databases, including the most relevant studies in full journal articles, investigating the problems of dignity in medicine. It emerged that dignity is a multifactorial construct and that dignity-preserving care should be at the center of the health organization. Dignity should be also regularly assessed through the tools currently available in clinical practice. Among dignity intervention, besides dignity models of care, dignity intervention, such as dignity therapy (DT), life review and reminiscence therapy, have a role in maintaining both the extrinsic (preserved when health care professionals treat the patient with respect, meeting physical and emotional needs, honors the patient's wishes, and makes attempts to maintain privacy and confidentiality) and intrinsic dignity (preserved when the patient has appropriate self-esteem, is able to exercise autonomy and has a sense of hope and meaning). Unified trends across diverse medical contexts highlight the need for a holistic, patient-centered approach in healthcare settings. Challenges compromising dignity are pervasive, underscoring the importance of interventions and systematic efforts to address these issues. Future research and interventions should prioritize the multifaceted nature of dignity, striving to create healthcare environments that foster compassion, respect, and dignity across all medical settings.
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Affiliation(s)
- Luigi Grassi
- Institute of Psychiatry, Department of Neuroscience and Rehabilitation, University of Ferrara, Via Fossato di Mortara 64°, 44121, Ferrara, Italy
- Integrated Department of Mental Health, University Hospital Psychiatry Unit, Ferrara, Italy
| | - Maria Giulia Nanni
- Institute of Psychiatry, Department of Neuroscience and Rehabilitation, University of Ferrara, Via Fossato di Mortara 64°, 44121, Ferrara, Italy
- Integrated Department of Mental Health, University Hospital Psychiatry Unit, Ferrara, Italy
| | - Michelle Riba
- Department of Psychiatry, and PsychOncology Program, University of Michigan Rogel Cancer Center, Ann Arbor, MI, USA
| | - Federica Folesani
- Institute of Psychiatry, Department of Neuroscience and Rehabilitation, University of Ferrara, Via Fossato di Mortara 64°, 44121, Ferrara, Italy.
- Integrated Department of Mental Health, University Hospital Psychiatry Unit, Ferrara, Italy.
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33
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Labuschagne D, Fleisher J, Woo K, Fitchett G. Feasibility and Acceptability of Dignity Therapy for People with Advanced Neurodegenerative Disease. J Pain Symptom Manage 2024; 67:e499-e502. [PMID: 38307374 DOI: 10.1016/j.jpainsymman.2024.01.034] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [MESH Headings] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 12/12/2023] [Revised: 01/18/2024] [Accepted: 01/22/2024] [Indexed: 02/04/2024]
Affiliation(s)
| | - Jori Fleisher
- Rush University Medical Center, Chicago, Illinois, USA
| | - Katheryn Woo
- Rush University Medical Center, Chicago, Illinois, USA
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34
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Hadler RA, Weeks S, Rosa WE, Choate S, Goldshore M, Julião M, Mergler B, Nelson J, Soodalter J, Zhuang C, Chochinov HM. Top Ten Tips Palliative Care Clinicians Should Know About Dignity-Conserving Practice. J Palliat Med 2024; 27:537-544. [PMID: 37831928 DOI: 10.1089/jpm.2023.0544] [Citation(s) in RCA: 4] [Impact Index Per Article: 4.0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 10/15/2023] Open
Abstract
The acknowledgment and promotion of dignity is commonly viewed as the cornerstone of person-centered care. Although the preservation of dignity is often highlighted as a key tenet of palliative care provision, the concept of dignity and its implications for practice remain nebulous to many clinicians. Dignity in care encompasses a series of theories describing different forms of dignity, the factors that impact them, and strategies to encourage dignity-conserving care. Different modalities and validated instruments of dignity in care have been shown to lessen existential distress at the end of life and promote patient-clinician understanding. It is essential that palliative care clinicians be aware of the impacts of dignity-related distress, how it manifests, and common solutions that can easily be adapted, applied, and integrated into practice settings. Dignity-based constructs can be learned as a component of postgraduate or continuing education. Implemented as a routine component of palliative care, they can provide a means of enhancing patient-clinician relationships, reducing bias, and reinforcing patient agency across the span of serious illness. Palliative care clinicians-often engaging patients, families, and communities in times of serious illness and end of life-wield significant influence on whether dignity is intentionally integrated into the experience of health care delivery. Thus, dignity can be a tangible, actionable, and measurable palliative care goal and outcome. This article, written by a team of palliative care specialists and dignity researchers, offers 10 tips to facilitate the implementation of dignity-centered care in serious illness.
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Affiliation(s)
- Rachel A Hadler
- Department of Anesthesiology, Department of Family and Preventive Medicine, Emory University, Atlanta, Georgia, USA
- Emory Critical Care Center, Department of Family and Preventive Medicine, Emory University, Atlanta, Georgia, USA
| | - Seth Weeks
- University of Iowa Carver College of Medicine, Iowa City, Iowa, USA
| | - William E Rosa
- Department of Psychiatry and Behavioral Sciences, Department of Medicine, Memorial Sloan-Kettering Cancer Center, New York, New York, USA
| | - Stephanie Choate
- Emory Palliative Care Center, Department of Family and Preventive Medicine, Emory University, Atlanta, Georgia, USA
| | - Matthew Goldshore
- Division of Pediatric General, Thoracic and Fetal Surgery, Children's Hospital of Philadelphia, Philadelphia, Pennsylvania, USA
| | - Miguel Julião
- Equipa Comunitária de Suporte em Cuidados Paliativos de Sintra, Sintra, Portugal
| | - Blake Mergler
- Department of Anesthesiology and Critical Care, Hospital of the University of Pennsylvania, Philadelphia, Pennsylvania, USA
| | - Judith Nelson
- Division of Supportive Care, Department of Medicine, Memorial Sloan-Kettering Cancer Center, New York, New York, USA
- Department of Medicine, Weill-Cornell Medical College, New York, New York, USA
| | - Jesse Soodalter
- Division of Palliative Medicine, Department of Family and Preventive Medicine, Emory University, Atlanta, Georgia, USA
| | - Caywin Zhuang
- Department of Anesthesia, University of Iowa Carver College of Medicine, Iowa City, Iowa, USA
| | - Harvey Max Chochinov
- Department of Psychiatry, University of Manitoba, Winnipeg, Manitoba, Canada
- CancerCare Manitoba Research Institute, University of Manitoba, Winnipeg, Manitoba, Canada
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Seiler A, Amann M, Hertler C, Christ SM, Schettle M, Kaeppeli BM, Jung-Amstutz J, Nigg C, Pestalozzi BC, Imesch P, Dummer R, Blum D, Jenewein J. Effects of dignity therapy on psychological distress and wellbeing of palliative care patients and family caregivers - a randomized controlled study. BMC Palliat Care 2024; 23:73. [PMID: 38486192 PMCID: PMC10938771 DOI: 10.1186/s12904-024-01408-4] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 01/24/2024] [Accepted: 03/08/2024] [Indexed: 03/18/2024] Open
Abstract
BACKGROUND This study extended the original Dignity Therapy (DT) intervention by including partners and family caregivers (FCs) of terminally-ill cancer patients with the overall aim of evaluating whether DT can mitigate distress in both patients nearing the end of life and their FCs. METHODS In this multicenter, randomized controlled trial (RCT), a total of 68 patients with life expectancy < 6 months and clinically-relevant stress levels (Hospital Anxiety Depression total score; HADStot ≥ 8) including their FCs were randomly assigned to DT, DT + (including their FCs), or standard palliative care (SPC) in a 1:1:1 ratio. Study participants were asked to complete a set of questionnaires pre- and post-intervention. RESULTS The coalesced group (DT and DT +) revealed a significant increase in patients' perceived quality of life (FACIT-Pal-14) following the intervention (mean difference 6.15, SD = 1.86, p < 0.01). We found a statistically significant group-by-time interaction effect: while the HADStot of patients in the intervention group remained stable over the pre-post period, the control group's HADStot increased (F = 4.33, df = 1, 82.9; p < 0.05), indicating a protective effect of DT. Most patients and their FCs found DT useful and would recommend it to other individuals in their situation. CONCLUSIONS The DT intervention has been well-received and shows the potential to increase HRQoL and prevent further mental health deterioration, illness burden and suffering in terminally-ill patients. The DT intervention holds the potential to serve as a valuable tool for facilitating end-of-life conversations among terminally-ill patients and their FCs. However, the implementation of DT within the framework of a RCT in a palliative care setting poses significant challenges. We suggest a slightly modified and less resource-intensive version of DT that is to provide the DT inventory to FCs of terminally-ill patients, empowering them to ask the questions that matter most to them over their loved one's final days. TRIAL REGISTRATION This study was registered with Clinical Trial Registry (ClinicalTrials.gov -Protocol Record NCT02646527; date of registration: 04/01/2016). The CONSORT 2010 guidelines were used for properly reporting how the randomized trial was conducted.
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Affiliation(s)
- Annina Seiler
- Department of Radiation Oncology, Competence Center for Palliative Care, University Hospital Zurich and University of Zurich, Rämistrasse 100, 8091, Zurich, Switzerland.
| | - Manuel Amann
- Department of Radiation Oncology, Competence Center for Palliative Care, University Hospital Zurich and University of Zurich, Rämistrasse 100, 8091, Zurich, Switzerland
| | - Caroline Hertler
- Department of Radiation Oncology, Competence Center for Palliative Care, University Hospital Zurich and University of Zurich, Rämistrasse 100, 8091, Zurich, Switzerland
| | - Sebastian M Christ
- Department of Radiation Oncology, Competence Center for Palliative Care, University Hospital Zurich and University of Zurich, Rämistrasse 100, 8091, Zurich, Switzerland
| | - Markus Schettle
- Department of Radiation Oncology, Competence Center for Palliative Care, University Hospital Zurich and University of Zurich, Rämistrasse 100, 8091, Zurich, Switzerland
| | | | | | | | - Bernhard C Pestalozzi
- Department of Medical Oncology and Hematology, University Hospital Zurich and University of Zurich, Zurich, Switzerland
| | - Patrick Imesch
- Department of Gynecology, University Hospital Zurich, Zurich, Switzerland
| | - Reinhard Dummer
- Department of Dermatology, University Hospital Zurich and University of Zurich, Zurich, Switzerland
| | - David Blum
- Department of Radiation Oncology, Competence Center for Palliative Care, University Hospital Zurich and University of Zurich, Rämistrasse 100, 8091, Zurich, Switzerland
| | - Josef Jenewein
- Privatklinik Hohenegg, Meilen, Switzerland
- University of Zurich, Zurich, Switzerland
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Xie M, Wang C, Li Z, Xu W, Wang Y, Wu Y, Hu R. Effects of remote dignity therapy on mental health among patients with hematologic neoplasms and their significant others: A randomized controlled trial. Int J Nurs Stud 2024; 151:104668. [PMID: 38211363 DOI: 10.1016/j.ijnurstu.2023.104668] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 04/18/2023] [Revised: 11/21/2023] [Accepted: 11/30/2023] [Indexed: 01/13/2024]
Abstract
BACKGROUND Families of patients with hematologic neoplasms involved in dignity therapy have exhibited a remarkable improvement in psychological well-being and family functioning. However, the applicability and generalizability of family participatory dignity therapy are limited as it is influenced by factors such as intervention time, place, and participants. Whether remote support from significant others is feasible and effective remains unknown. OBJECTIVES This study aimed to confirm the efficacy of significant others participating in remote dignity therapy (r-DT) on hope, dignity loss, meaning of life, and sense of stigma among patients with hematologic neoplasms as well as their significant others' depression and anxiety. DESIGN A randomized, single-blinded, two-arm, parallel-group controlled trial. SETTING(S) AND PARTICIPANTS Participants included patients with hematologic neoplasms and their significant others, who were recruited from Fujian Medical University Union Hospital from May 2021 to January 2022. METHODS A total of 72 eligible participants (patients and significant others) agreed to participate, and were randomly assigned to an intervention group (n = 35) or a control group (n = 37). Each pair of participants in the intervention group participated in two or three conversations based on the online video function of the WeChat platform, performed by one therapist in accordance with a specific communication outline. To evaluate the effects of the intervention, we assessed the patients' degree of dignity loss, hope level, meaning of life, and sense of stigma, as well as their significant others' depression, anxiety, and intimacy at baseline (T0), 15 days (T1), 30 days (T2), and 60 days (T3), and compared the scores between the two groups after the completion of the intervention. The Generalized Estimation Equation Model (GEE) was used to examine the effects of time, group, and their interaction. RESULTS The intervention group statistically significantly differed in lower dignity loss (t = 2.190, p = 0.032), higher hope level (t = -2.010, p = 0.049), and higher meaning of life (t = -2.066, p = 0.043) than the control group at T1. Regarding their significant others, the results of the comparison between the two groups showed that significant others in the intervention group had reduced levels of anxiety and depression at T1 and T2 (p < 0.05). The majority of patients (84.38 %) and significant others (75.00 %) provided positive evaluations of the program. CONCLUSIONS The r-DT showed a short-term positive effect on decreasing patients' dignity loss and promoting patients' hope and meaning of life; among their significant others, it decreased anxiety and depression. TRIAL REGISTRATION Registered in the China Clinical Trial Registry on 17 March 2021(ChiCTR2100044374). TWEETABLE ABSTRACT Remote dignity therapy decreased patients' dignity loss and promoted their hope and meaning of life; among their significant others, it decreased anxiety and depression.
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Affiliation(s)
- Mengting Xie
- School of Nursing, Fujian Medical University, No. 1 Xueyuan Road, Shangjie Town, Minhou County, Fuzhou City, Fujian Province, China
| | - Chunfeng Wang
- School of Nursing, Fujian Medical University, No. 1 Xueyuan Road, Shangjie Town, Minhou County, Fuzhou City, Fujian Province, China
| | - Zhangjie Li
- School of Nursing, Fujian Medical University, No. 1 Xueyuan Road, Shangjie Town, Minhou County, Fuzhou City, Fujian Province, China
| | - Wenkui Xu
- School of Nursing, Fujian Medical University, No. 1 Xueyuan Road, Shangjie Town, Minhou County, Fuzhou City, Fujian Province, China
| | - Ying Wang
- School of Nursing, Fujian Medical University, No. 1 Xueyuan Road, Shangjie Town, Minhou County, Fuzhou City, Fujian Province, China
| | - Yong Wu
- Department of hematology, Fujian Medical University Union Hospital, No. 29 Xinquan Road, Fuzhou City, Fujian Province, China.
| | - Rong Hu
- School of Nursing, Fujian Medical University, No. 1 Xueyuan Road, Shangjie Town, Minhou County, Fuzhou City, Fujian Province, China.
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Mani RK, Bhatnagar S, Butola S, Gursahani R, Mehta D, Simha S, Divatia JV, Kumar A, Iyer SK, Deodhar J, Bhat RS, Salins N, Thota RS, Mathur R, Iyer RK, Gupta S, Kulkarni P, Murugan S, Nasa P, Myatra SN. Indian Society of Critical Care Medicine and Indian Association of Palliative Care Expert Consensus and Position Statements for End-of-life and Palliative Care in the Intensive Care Unit. Indian J Crit Care Med 2024; 28:200-250. [PMID: 38477011 PMCID: PMC10926026 DOI: 10.5005/jp-journals-10071-24661] [Citation(s) in RCA: 4] [Impact Index Per Article: 4.0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 02/01/2024] [Accepted: 02/28/2024] [Indexed: 03/14/2024] Open
Abstract
End-of-life care (EOLC) exemplifies the joint mission of intensive and palliative care (PC) in their human-centeredness. The explosion of technological advances in medicine must be balanced with the culture of holistic care. Inevitably, it brings together the science and the art of medicine in their full expression. High-quality EOLC in the ICU is grounded in evidence, ethical principles, and professionalism within the framework of the Law. Expert professional statements over the last two decades in India were developed while the law was evolving. Recent landmark Supreme Court judgments have necessitated a review of the clinical pathway for EOLC outlined in the previous statements. Much empirical and interventional evidence has accumulated since the position statement in 2014. This iteration of the joint Indian Society of Critical Care Medicine-Indian Association of Palliative Care (ISCCM-IAPC) Position Statement for EOLC combines contemporary evidence, ethics, and law for decision support by the bedside in Indian ICUs. How to cite this article Mani RK, Bhatnagar S, Butola S, Gursahani R, Mehta D, Simha S, et al. Indian Society of Critical Care Medicine and Indian Association of Palliative Care Expert Consensus and Position Statements for End-of-life and Palliative Care in the Intensive Care Unit. Indian J Crit Care Med 2024;28(3):200-250.
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Affiliation(s)
- Raj K Mani
- Department of Critical Care and Pulmonology, Yashoda Super Specialty Hospital, Ghaziabad, Kaushambi, Uttar Pradesh, India
| | - Sushma Bhatnagar
- Department of Onco-Anaesthesia and Palliative Medicine, All India Institute of Medical Sciences, New Delhi, India
| | - Savita Butola
- Department of Palliative Care, Border Security Force Sector Hospital, Panisagar, Tripura, India
| | - Roop Gursahani
- Department of Neurology, P. D. Hinduja National Hospital & Medical Research Centre, Mumbai, Maharashtra, India
| | - Dhvani Mehta
- Division of Health, Vidhi Centre for Legal Policy, New Delhi, India
| | - Srinagesh Simha
- Department of Palliative Care, Karunashraya, Bengaluru, Karnataka, India
| | - Jigeeshu V Divatia
- Department of Anaesthesia, Critical Care, and Pain, Tata Memorial Hospital, Homi Bhabha National Institute, Mumbai, Maharashtra, India
| | - Arun Kumar
- Department of Intensive Care, Medical Intensive Care Unit, Fortis Healthcare Ltd, Mohali, Punjab, India
| | - Shiva K Iyer
- Department of Critical Care, Bharati Vidyapeeth (Deemed to be University) Medical College, Pune, Maharashtra, India
| | - Jayita Deodhar
- Department Palliative Care, Tata Memorial Hospital, Mumbai, Maharashtra, India
| | - Rajani S Bhat
- Department of Interventional Pulmonology and Palliative Medicine, SPARSH Hospitals, Bengaluru, Karnataka, India
| | - Naveen Salins
- Department of Palliative Medicine and Supportive Care, Kasturba Medical College Manipal Academy of Higher Education, Manipal, Karnataka, India
| | - Raghu S Thota
- Department Palliative Care, Tata Memorial Hospital, Mumbai, Maharashtra, India
| | - Roli Mathur
- Department of Bioethics, Indian Council of Medical Research, Bengaluru, Karnataka, India
| | - Rajam K Iyer
- Department of Palliative Care, Bhatia Hospital; P. D. Hinduja National Hospital & Medical Research Centre, Mumbai, Maharashtra, India
| | - Sudeep Gupta
- Department of Medical Oncology, Tata Memorial Centre, Homi Bhabha National Institute, Mumbai, India
| | | | - Sangeetha Murugan
- Department of Education and Research, Karunashraya, Bengaluru, Karnataka, India
| | - Prashant Nasa
- Department of Critical Care Medicine, NMC Specialty Hospital, Dubai, United Arab Emirates
| | - Sheila N Myatra
- Department of Anesthesiology, Critical Care and Pain, Tata Memorial Hospital, Homi Bhabha National Institute, Mumbai, India
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Belar A, Arantzamendi M, Larkin P, Saralegui I, Santesteban Y, Alonso N, Martínez M, Centeno C. The state of transience, and its influence on the wish to die of advanced disease patients: insights from a qualitative phenomenological study. BMC Palliat Care 2024; 23:57. [PMID: 38408953 PMCID: PMC10895803 DOI: 10.1186/s12904-024-01380-z] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 12/21/2023] [Accepted: 02/09/2024] [Indexed: 02/28/2024] Open
Abstract
BACKGROUND The experience of Wish to Die is common in patients living with Advanced Disease. It has been studied worldwide and qualitative studies have contributed to the understanding of the complexity of the phenomenon of the WTD but a deeper understanding on the individual's views is still needed. The objective of this study was to identify common characteristics of the experience of wish to die in advanced disease. METHODS A phenomenological study was carried out with multicenter participation of patients with advanced disease who had expressed their wish to die to health professionals. Semi-structured interviews were employed to obtain an in-depth perspective of each patient's lived experience. A phenomenological analysis of the data collected was performed to describe and explore the characteristic aspects of the phenomenon under study. RESULTS Fourteen patients with advanced disease were interviewed. Most of them had cancer. In the analysis of the patients' accounts of their experiences, three common characteristics were identified: a) experiencing a state of transience; b) the attempt to reconnect with oneself; and c) additional disease-related aspects that influence the wish to die. Patients expressed the need for a safe space to address the wish to die and the importance of receiving care that considers both 'being' and 'doing'. CONCLUSIONS Patients with advanced disease and wish to die experience a state of transience where the patient lives and ephemeral state of existence. Interventions focused on reinforcing the intrinsic value of the individual emerge as essential components of a compassionate accompaniment of those facing the wish to die.
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Affiliation(s)
- Alazne Belar
- Institute for Culture and Society, University of NavarraIdiSNA, Pamplona, Spain.
| | - Maria Arantzamendi
- Institute for Culture and Society, University of NavarraIdiSNA, Pamplona, Spain.
| | - Philip Larkin
- Palliative and Supportive care service, University Hospital of Lausanne and University of Lausanne, Lausanne, Switzerland
| | | | | | | | | | - Carlos Centeno
- Institute for Culture and Society, University of Navarra, Clínica Universidad de Navarra, IdiSNA, Pamplona, Spain
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Freitas MJ, Remondes-Costa S, Veiga E, Macedo G, Teixeira RJ, Leite M. Life beyond Loss: A Retrospective Analysis of the Impact of Meaning of Life Therapy on the Grieving Process of Cancer Patients' Family Caregivers. Healthcare (Basel) 2024; 12:471. [PMID: 38391846 PMCID: PMC10887668 DOI: 10.3390/healthcare12040471] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 12/29/2023] [Revised: 01/18/2024] [Accepted: 02/10/2024] [Indexed: 02/24/2024] Open
Abstract
Oncological disease in the palliative stage is a huge challenge for patients and their family caregivers (FCs) due to the fact that it confronts them with death, as well as physical, psychological, and existential suffering. Meaning of Life Therapy (MLT) is a brief structured psycho-existential intervention aiming to help patients in a meaning-making life review process, promoting end-of-life adaptation. The Life Letter (LL) resulting from MLT is an element that facilitates communication between the patient and their caregivers. The goal of this study was to understand the impact of MLT on the grieving processes of eight FCs and to study their perceptions of the role of the LL on grief through semi-structured interviews. The results of our qualitative analysis indicate that MLT was perceived by the FCs as a positive experience despite the conspiracy of silence being identified as a drawback. The LL was interpreted as a communicational element, promoting emotional closeness with the cancer patients and serving as a valuable tool in the FCs' adaptation to loss. Our research findings show that the needs of FCs, especially after experiencing the loss of their relative, are dynamic and specific. This is why it is urgent to develop interventions that consider the idiosyncrasies of end-of-life cancer patients and their FCs in order to avoid frustrated farewells, lonely deaths, and maladaptive grieving processes. This is the direction in which MLT should evolve.
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Affiliation(s)
- Maria João Freitas
- Department of Social and Behavioural Sciences, University Institute of Health Sciences (IUCS-CESPU), 4585-116 Gandra, Portugal
| | - Sónia Remondes-Costa
- Department of Education and Psychology, University of Trás-os-Montes e Alto Douro, 5000-622 Vila Real, Portugal
| | - Elisa Veiga
- Research Centre for Human Development, Faculty of Education and Psychology, Universidade Católica Portuguesa, 4169-005 Porto, Portugal
| | - Gerly Macedo
- Clinical and Health Psychology Unit, Psychiatry and Mental Health Service, Hospital da Senhora da Oliveira, 4835-044 Guimarães, Portugal
| | - Ricardo João Teixeira
- REACH-Mental Health Clinic, 4000-138 Porto, Portugal
- CINEICC (Center for Research in Neuropsychology and Cognitive and Behavioral Intervention), Faculty of Psychology and Education Sciences, University of Coimbra, 3004-531 Coimbra, Portugal
| | - Manuela Leite
- Department of Social and Behavioural Sciences, University Institute of Health Sciences (IUCS-CESPU), 4585-116 Gandra, Portugal
- iHealth4Well-Being-Innovation in Health and Well-Being-Research Unit, Instituto Politécnico de Saúde do Norte, CESPU, 4560-462 Penafiel, Portugal
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Da Rocha Rodrigues G, Warne DW, Scuderi L, Lilla D, Stanic J, Pautex S. Revie ⊕: Impact of a resource-based life review intervention on patients with advanced cancer: A waitlist controlled trial. Eur J Oncol Nurs 2024; 68:102506. [PMID: 38301385 DOI: 10.1016/j.ejon.2024.102506] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 10/09/2023] [Revised: 12/27/2023] [Accepted: 01/05/2024] [Indexed: 02/03/2024]
Abstract
PURPOSE Life review interventions aim to support individuals facing an incurable disease accompanied by existential concerns and health-related challenges. Based on encouraging feasibility results, this study assessed the effects of Revie ⊕ life review intervention on the self-esteem of patients with advanced cancer, and the effects on well-being, post-traumatic growth, life satisfaction, symptom burden and interaction with nurses. METHOD The study consisted of a two-arm parallel-group, waitlist-controlled trial (WCT) in the oncology division of a Swiss-French University Hospital. Revie ⊕ was composed of nurse-led meeting with the patient to address and document significant life events using a strengths-focused approach and targeting the life project. RESULTS Due to Covid-19 pandemic, adjustments were made regarding study duration and participant's allocation: Fifty-eight patients received Revie ⊕, 39 completed all the measurements. Self-esteem was high at baseline and maintained stability over time. The social well-being decreased in the intervention group before-after Revie ⊕ (-1.7 (3.9), p = 0.044) while emotional and functional well-being showed stability. The intensity of symptoms decreased in the intervention group before-after Revie ⊕: 4.9 (9.4), p = 0.020. CONCLUSIONS This study suggests that patients living with an advanced cancer and who received Revie ⊕ intervention may have maintained their self-esteem high over time. Observed results are promising, particularly considering the influence of the pandemic. Nevertheless, these findings do not allow us to draw definitive conclusions regarding the efficacy of the intervention on self-esteem. WCT seems not to be the appropriate design to highlight the added value of Revie ⊕ for this particularly vulnerable population. CLINICAL TRIAL REGISTRATION NUMBER NCT04254926.
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Affiliation(s)
- Gora Da Rocha Rodrigues
- Geneva School of Health Sciences, HES-SO University of Applied Sciences and Arts Western Switzerland, Switzerland; HESAV School of Health Sciences, HES-SO University of Applied Sciences and Arts Western Switzerland, Switzerland.
| | - David W Warne
- Academic Fellow of the Research Center for Statistics, Geneva School of Economics and Management, University of Geneva, Switzerland.
| | - Luca Scuderi
- HESAV School of Health Sciences, HES-SO University of Applied Sciences and Arts Western Switzerland, Switzerland.
| | - Déborah Lilla
- HESAV School of Health Sciences, HES-SO University of Applied Sciences and Arts Western Switzerland, Switzerland.
| | - Jelena Stanic
- HESAV School of Health Sciences, HES-SO University of Applied Sciences and Arts Western Switzerland, Switzerland.
| | - Sophie Pautex
- Palliative Medicine Division, Department of Readaptation and Geriatrics, University Hospitals of Geneva, University of Geneva, Switzerland.
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Liu TH, Vernon-Cwik A, Tun S. Examining a Novel Legacy Activity for Elders: Oral Histories as Produced Stories. Palliat Med Rep 2024; 5:25-33. [PMID: 38249833 PMCID: PMC10797308 DOI: 10.1089/pmr.2023.0032] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Accepted: 11/10/2023] [Indexed: 01/23/2024] Open
Abstract
Background Many African American elders who participated in The Great Migration are in the latter years of their lives. One way to maintain their memories and those of elders at large is through legacy activities, projects that initiate a life review process resulting in a product surviving after an individual's death. However, literature on culturally attuned legacy activities as well as measurement of impact are limited. Objectives This project sought to introduce a novel legacy activity for elders-the oral history as produced aural self-story-detailing its creation and examining its therapeutic efficacy. Design Setting and Subjects Nine African American elders who experienced The Great Migration receiving care from an urban, geriatric clinic were recruited. Oral histories were conducted, produced into aural self-stories, and examined with follow-up interviews and a project evaluation survey. Qualitative analysis of the follow-up interview and a project evaluation survey were used to ascertain therapeutic outcomes. Results : All participants recommended the project and found self-story listening meaningful or beneficial. Qualitative interviews produced 13 codes; the five most frequent were reflection/contemplation (n = 18), sentimentality/positive affect and affirmation/enlightenment (n = 10), as well as empathy/gratitude and curiosity/intrigue/peculiarity (n = 7). Conclusion : Our project suggests that aural self-stories produced from oral histories enhance the current elder legacy activity landscape by facilitating meaning and existential affirmation, additionally leaving a product for subsequent generations. Future studies include comparison to existing legacy interventions and project examination in additional elder populations.
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Affiliation(s)
- Tony H. Liu
- Pritzker School of Medicine, University of Chicago, Chicago, Illinois, USA
| | | | - Sandy Tun
- Department of Medicine, University of Chicago, Chicago, Illinois, USA
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De Vincenzo F, Lombardo L, Iani L, Maruelli A, Durante S, Ragghianti M, Park CL, Innamorati M, Quinto RM. Spiritual well-being, dignity-related distress and demoralisation at the end of life-effects of dignity therapy: a randomised controlled trial. BMJ Support Palliat Care 2024; 13:e1238-e1248. [PMID: 36702519 DOI: 10.1136/spcare-2022-003696] [Citation(s) in RCA: 6] [Impact Index Per Article: 6.0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 04/07/2022] [Accepted: 01/10/2023] [Indexed: 01/27/2023]
Abstract
OBJECTIVES This single-centre prospective randomised controlled study aimed to investigate the effectiveness of dignity therapy on spiritual well-being, demoralisation and dignity-related distress compared with standard palliative care. METHODS A total of 111 terminally ill hospice patients were randomly allocated to one of two groups: dignity therapy plus standard palliative care (intervention group) or standard palliative care alone (control group). The main outcomes were meaning, peace, faith, loss of meaning and purpose, distress and coping ability, existential distress, psychological distress and physical distress. Assessments were conducted at baseline, 7-10 and 15-20 days. RESULTS Following randomisation, 11 dropped out before baseline assessment and 33 after post-treatment assessment. A total of 67 patients completed the study, 35 in the experimental group and 32 in the control group. Repeated measures general linear model showed significant differences between groups on peace and psychological distress over time, but not on existential distress, physical distress, meaning and purpose, distress and coping ability, meaning and faith. Specifically, patients in the dignity therapy intervention maintained similar levels of peace from baseline to follow-up, whereas patients in the control group significantly declined in peace during the same time period. Moreover, psychological distress significantly decreased from pretreatment to post-treatment in the intervention group and increased in the control group. CONCLUSIONS Dignity therapy may be an effective intervention in maintaining sense of peace for terminally ill patients. The findings of our study are of relevance in palliative care and suggest the potential clinical utility of this psychological intervention.
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Affiliation(s)
| | - Luigi Lombardo
- U.O. di Cure Palliative, Fondazione Sanità e Ricerca, Rome, Italy
| | - Luca Iani
- Department of Human Sciences, European University of Rome, Rome, Italy
| | - Alice Maruelli
- Psychology Unit, LILT and Center for Oncological Rehabilitation-CERION of Florence, Florence, Italy
| | - Sieva Durante
- U.O. di Cure Palliative, Fondazione Sanità e Ricerca, Rome, Italy
| | - Matilde Ragghianti
- Psychology Unit, LILT and Center for Oncological Rehabilitation-CERION of Florence, Florence, Italy
| | - Crystal L Park
- Department of Psychology, University of Connecticut, Storrs, Connecticut, USA
| | - Marco Innamorati
- Department of Human Sciences, European University of Rome, Rome, Italy
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Züger A. Hidden persons in dignity therapy: The transcriptionists experiences in-between. Palliat Support Care 2023; 21:1095-1096. [PMID: 37885371 DOI: 10.1017/s1478951523001566] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 10/28/2023]
Affiliation(s)
- Andrea Züger
- Institute of the History, Theory and Ethics of Medicine, Justus Liebig University Giessen, Gießen, Germany
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Bell BK, Liu R, Cheng S, Marchand L. Top Ten Tips Palliative Care Clinicians Should Know About Integrative Palliative Care. J Palliat Med 2023; 26:1719-1727. [PMID: 38060315 DOI: 10.1089/jpm.2023.0219] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 12/18/2023] Open
Abstract
Integrative medicine (IM) use is widespread among individuals living with serious illness. There is a natural alignment between the fields of IM and palliative care (PC) rooted in their shared core values. Integrative palliative care (IPC) is an emerging focus within the field of PC that aims to broaden the healing toolkit available to patients with serious illness by combining standard-of-care biomedical treatments with evidence-informed integrative and complementary medicine practices with the goal of enhancing quality of life at every stage of a person's health journey. This article is an evidence-based guide to incorporating IPC practices into the care of seriously ill individuals.
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Affiliation(s)
- Brieze K Bell
- Divisions of Palliative Medicine, University of California San Francisco, San Francisco, California, USA
- Divisions of Hospital Medicine, University of California San Francisco, San Francisco, California, USA
| | - Rhianon Liu
- Division of Palliative Medicine, Maine Medical Center, Portland, Maine, USA
| | - Stephanie Cheng
- Divisions of Palliative Medicine, University of California San Francisco, San Francisco, California, USA
| | - Lucille Marchand
- Section of Palliative Care, Department of Family Medicine, University of Washington, Seattle, Washington, USA
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Sharma A. Palliative Care and Care Partner Support in Neuro-oncology. Continuum (Minneap Minn) 2023; 29:1872-1895. [PMID: 38085902 DOI: 10.1212/con.0000000000001353] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 12/18/2023]
Abstract
ABSTRACT The journey for a patient with a brain tumor and their loved ones can be extremely challenging due to the high burden of physical symptoms and the emotional distress caused by the diagnosis. Optimizing quality of life by addressing symptoms and reducing this emotional distress can improve treatment tolerance and outcomes and alleviate care partner distress and burden. Symptoms in patients with central nervous system (CNS) tumors can vary in onset and intensity, ranging from headaches, seizures, and focal weakness to emotional distress and cognitive dysfunction. Additionally, care partners may demonstrate distress due to the high burden of care and need appropriate support structures and access to resources to alleviate this stress. Evidence-based recommendations are unfortunately limited given the lack of high-quality research in this area, but patients living with CNS tumors and their loved ones can benefit from early and routine symptom identification and management, compassionate and transparent communication, and practical guidance for the future. These principles are part of palliative care, a field of medicine focused on alleviating suffering in patients with serious, chronic illness. Clinicians involved in the care of patients with CNS tumors must be educated in these important primary palliative care principles. This article focuses on key symptom management, strategies for high-quality communication, a discussion of advance care planning, and an overview of end-of-life care.
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Chew NM, Ting EL, Kerr L, Brewster DJ, Russo PL. Psychosocial Interventions at the End-of-Life: A Scoping Review. Cancer Nurs 2023; 46:432-446. [PMID: 35786585 DOI: 10.1097/ncc.0000000000001136] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/26/2022]
Abstract
BACKGROUND The integration of holistic and effective end-of-life (EOL) care into cancer management has increasingly become a recognized field. People living with terminal cancer and their caregivers face a unique set of emotional, spiritual, and social stressors, which may be managed by psychosocial interventions. OBJECTIVES This study aimed to explore the types and characteristics of psychosocial interventions at the EOL for adult cancer patients and their caregivers and to identify gaps in the current literature. METHODS A systematic search was conducted through MEDLINE (Ovid) and CINAHL from January 1, 2011, to January 31, 2021, retrieving 2453 results. A final 15 articles fulfilled the inclusion criteria, reviewed by 2 independent reviewers. Ten percent of the original articles were cross-checked against study eligibility at every stage by 2 experienced researchers. RESULTS Most interventions reported were psychotherapies, with a predominance of meaning or legacy-related psychotherapies. Most interventions were brief, with significant caregiver involvement. Most studies were conducted in high-income, English-speaking populations. CONCLUSION There is robust, although heterogeneous, literature on a range of psychosocial interventions at the EOL. However, inconsistencies in the terminology used surrounding EOL and means of outcome assessment made the comparison of interventions challenging. IMPLICATION FOR PRACTICE Future studies will benefit from increased standardization of study design, EOL terminology, and outcome assessment to allow for a better comparison of intervention efficacy. There is a need for increased research in psychosocial interventions among middle- to low-income populations exploring social aspects, intimacy, and the impact of COVID-19.
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Affiliation(s)
- Nicolle Marie Chew
- Author Affiliations: School of Medicine, Monash University (Drs Chew and Ting); Cabrini Monash University Department of Nursing Research, Cabrini Health (Drs Chew, Ting, Russo, and Kerr); School of Nursing and Midwifery, Monash University (Drs Russo and Kerr); Intensive Care Unit, Cabrini Hospital (Dr Brewster); and Central Clinical School, Monash University (Dr Brewster), Victoria, Australia
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Marina S, Wainwright T, Ricou M. Views of Psychologists About Their Role in Hastened Death. OMEGA-JOURNAL OF DEATH AND DYING 2023; 88:200-215. [PMID: 34494472 DOI: 10.1177/00302228211045166] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.5] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/16/2022]
Abstract
Hastened death practices are legal in several countries. Psychologists are increasingly taking a more active role in end-of-life issues, but the role of psychologists in requests to hasten death is not established. This study aims to contribute guidance for psychological practice in the context of requests to hasten death. We conducted a cross-sectional and cross-cultural study with Psychologists from Portugal and Luxembourg who answer closed and open questions to provide views about their role in hastened death. Psychological assessment, psychological support to patient and family, the exploration of patient decision-making and reorientation of patients were viewed as roles for psychologists. However, these roles may differ depending whether the patient has a terminal or non-terminal illness.
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Affiliation(s)
- Sílvia Marina
- Faculty of Medicine, University of Porto, Porto, Portugal
- CINTESIS - Center for Health Technology and Services Research, Porto, Portugal
| | - Tony Wainwright
- College of Life and Environmental Sciences, University of Exeter, Exeter, UK
| | - Miguel Ricou
- Faculty of Medicine, University of Porto, Porto, Portugal
- CINTESIS - Center for Health Technology and Services Research, Porto, Portugal
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Wachholz P, Giacomin K. Dignity in the care of older adults living in nursing homes and long-term care facilities. F1000Res 2023; 11:1208. [PMID: 38434004 PMCID: PMC10904933 DOI: 10.12688/f1000research.126144.3] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Accepted: 10/23/2023] [Indexed: 03/05/2024] Open
Abstract
Depending on the fields and actors involved, dignity may involve, signify, and encompass different meanings. This fundamental right can be subjectively experienced and rooted in a person's perception of being treated and cared for. Care refers to a set of specific activities combined in a complex life-sustaining network, including long-term Care, which involves various services designed to meet a person's health or personal care needs. However, older residents' human rights have been disrespected and widened the gaps between theory and practice regarding the precarious protection of their rights and dignity inside long-term facilities and nursing homes. This paper aims to discuss threats to dignity and elucidate some strategies to promote and conserve dignity in care, including the person-centered practice in long-term care. Some barriers to the dignity of older residents involve the organizational culture, restraints of time, heavy workload, burnout, and lack of partnership between the residents, their families, and the long-term care homes' staff. Person-centered integrated care quality frameworks are core components of a good quality of care in these spaces in high-income countries. Unfortunately, the COVID-19 pandemic highlighted how weak long-term care policies were and demonstrated that much progress in the dignity of care in long-term care facilities and nursing homes is needed. In low- and middle-income countries, long-term care policies do not accompany the accelerated and intense aging process, and there are other threats, like their invisibility to the public sector and the prejudices about this service model. It's urgent to create strategies for designing and implementing sustainable and equitable long- term care systems based on a person-centered service with dignity to everyone who needs it.
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Affiliation(s)
- Patrick Wachholz
- Programa de Pós-Graduação em Pesquisa Clínca, Faculdade de Medicina de Botucatu, Universidade Estadual Paulista (Unesp), Botucatu, São Paulo, 18618687, Brazil
| | - Karla Giacomin
- Núcleo de Estudos em Saúde Pública e Envelhecimento, Fundação Oswaldo Cruz, Belo Horizonte, Minas Gerais, Brazil
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Cardoso AR, Remondes-Costa S, Veiga E, Almeida V, Rocha J, Teixeira RJ, Macedo G, Leite M. Meaning of Life Therapy: A Pilot Study of a Novel Psycho-Existential Intervention for Palliative Care in Cancer. OMEGA-JOURNAL OF DEATH AND DYING 2023:302228231209654. [PMID: 37884277 DOI: 10.1177/00302228231209654] [Citation(s) in RCA: 2] [Impact Index Per Article: 1.0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 10/28/2023]
Abstract
Intervention in Palliative Care aims to provide physical, psychosocial, and spiritual relief for patients and family members. Brief interventions with a psycho-existential approach have shown positive responses; however, cultural adaptations are needed. This pilot study aimed to develop the Meaning of Life Therapy (MLT), a novel psycho-existential intervention, rooted in the Dignity Therapy, Life Review, and Meaning-Centered Psychotherapy. MLT was culturally adapted to the Portuguese context to include questions about forgiveness, apology, reconciliation, farewell, and a legacy document, i.e., the Life Letter. Nine PC cancer patients answered a 14-question MLT protocol, intended to help patients find purpose and meaning in life. Eight themes emerged: Family, Preservation of Identity, Life Retrospective, Clinical Situation, Achievements, Socio-Professional Valorization, Forgiveness/Apology/Reconciliation, and Saying Goodbye. MLT has proved its ability to respond to the psycho-existential needs of PC patients. Further studies should be conducted to gain extensive knowledge of the effectiveness of culturally responsive interventions.
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Affiliation(s)
- Ana Rita Cardoso
- Casa de Saúde do Telhal, Instituto São João de Deus, Lisboa, Portugal
| | - Sónia Remondes-Costa
- Department of Education and Psychology, School of Human and Social Sciences, University of Trás-os-Montes e Alto Douro, Vila Real, Portugal
| | - Elisa Veiga
- Faculty of Education and Psychology, Universidade Católica Portuguesa, Research Centre for Human Development, Porto, Portugal
| | - Vera Almeida
- Department of Social and Behavioural Sciences, University Institute of Health Sciences(IUCS), CESPU, Gandra, Portugal
- UNIPRO, Oral Pathology and Rehabilitation Research Unit, University Institute of Health Sciences(IUCS), CESPU, Gandra, Portugal
| | - José Rocha
- Department of Social and Behavioural Sciences, University Institute of Health Sciences(IUCS), CESPU, Gandra, Portugal
| | - Ricardo João Teixeira
- CINEICC- Faculty of Psychology and Education Sciences, University of Coimbra, Coimbra, Portugal
- REACH - Mental Health Clinic, Porto, Portugal
| | - Gerly Macedo
- Clinical and Health Psychology Unit, Psychiatry and Mental Health Service, Hospital da Senhora de Oliveira de Guimarães, Guimarães, Portugal
| | - Manuela Leite
- Department of Social and Behavioural Sciences, University Institute of Health Sciences(IUCS), CESPU, Gandra, Portugal
- iHealth4Well-being - Innovation in Health and Well-Being, Research Unit, Instituto Politécnico de Saúde do Norte, CESPU, Penafiel, Portugal
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Neller SA, Cloyes KG, Edelman LS, Wong B, Baines B, Towsley GL. Preparing for the Future While Living in the Present: Older Adults' Experiences Creating a Legacy of Values. THE GERONTOLOGIST 2023; 63:1488-1496. [PMID: 36842069 PMCID: PMC10581374 DOI: 10.1093/geront/gnad019] [Citation(s) in RCA: 2] [Impact Index Per Article: 1.0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 11/28/2022] [Indexed: 02/27/2023] Open
Abstract
BACKGROUND AND OBJECTIVES A legacy of values (e.g., legacy letter) is a nonlegal way to intentionally communicate intangible assets (e.g., values, life lessons, and emotional and supportive instruction) with others. There is scant research on legacy creation outside of a palliative care context, and no studies have explored the experiences of community-dwelling older adults creating a legacy of values. RESEARCH DESIGN AND METHODS As part of an exploratory sequential mixed methods study, we conducted semistructured interviews with older adults (N = 16) who had previously created a legacy of values. We analyzed transcribed interviews using an interpretive descriptive approach. We iteratively coded interviews deductively with sensitizing concepts identified in the literature (existential well-being, end-of-life preparation and completion, generativity, and resilience), and inductively, based on participants' descriptions. Codes were categorized by patterns of motivations, content, outcomes, and meaning, and thematically summarized. RESULTS We conceptualized the overall experience of creating a legacy of values as Preparing for the Future While Living in the Present and identified 4 themes: Preserving the Intangible for You and for Me, Sharing What I Want You to Know, Obtaining Peace through Reflection and Preparation, and Living into a Continuing Legacy. Participants attained peace, realized their life was not complete, and were challenged to live intentionally through legacy creation. DISCUSSION AND IMPLICATIONS Creating a legacy of values may concurrently prepare older adults for the end of life and the remainder of life. These findings offer insight into a generative act that can promote intentional living among older adults.
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Affiliation(s)
- Sarah A Neller
- College of Nursing, The University of Tennessee, Knoxville, Knoxville, Tennessee, USA
| | - Kristin G Cloyes
- School of Nursing, Oregon Health & Science University, Portland, Oregon, USA
| | - Linda S Edelman
- College of Nursing, University of Utah, Salt Lake City, Utah, USA
| | - Bob Wong
- College of Nursing, University of Utah, Salt Lake City, Utah, USA
| | - Barry Baines
- Hennepin Health Care Hospice of the Twin Cities, Minneapolis, Minnesota, USA
| | - Gail L Towsley
- College of Nursing, University of Utah, Salt Lake City, Utah, USA
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