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Appelgren M, Wengström Y, de Boniface J, Sackey H. 'Balancing Challenges and Personal Resources': A Qualitative Study of Women's Experiences of Arm Impairment After Axillary Surgery for Breast Cancer. J Adv Nurs 2025; 81:3156-3165. [PMID: 39373540 PMCID: PMC12080084 DOI: 10.1111/jan.16517] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Download PDF] [Journal Information] [Subscribe] [Scholar Register] [Received: 04/01/2024] [Revised: 08/27/2024] [Accepted: 09/23/2024] [Indexed: 10/08/2024]
Abstract
AIM To explore how women previously treated for breast cancer experience living with arm impairment after axillary surgery. DESIGN Descriptive qualitative study. The inductive starting point for the analysis was followed by a deductive approach as the categories were related to the components of the sense of coherence framework. METHODS Twenty-eight relapse-free Swedish-speaking females participated in six focus group discussions conducted between September and December 2022. All participants had undergone sentinel lymph node biopsy with or without completion axillary dissection 4 years earlier. Data were analysed using qualitative content analysis. RESULTS Three categories and an overall theme were identified. The categories 'Sense-making', 'Daily life' and 'Driving force' reflect actions to understand and prevent arm symptoms, adaptations made in daily life and the empowering resources adopted to meet challenges. The overall theme, 'Balancing challenges and personal resources', comprised a process that began at diagnosis and remained ongoing for some participants. Most participants considered their new life situations manageable. However, those with more pronounced arm impairment reported that they did not always receive adequate aid, and that their daily lives were negatively affected. CONCLUSION Returning to everyday life after axillary surgery for breast cancer is associated with varying degrees of challenges. Individuals with persistent arm impairment find returning to normal life more challenging. Therefore, further improvements in person-centred care are of utmost importance. PATIENT AND PUBLIC CONTRIBUTION Members of the Swedish Breast Cancer Association were involved in the creation of the interview guide. IMPACT This study emphasises the requirement for providing further individualised support to those living with more severe arm impairment after axillary surgery. REPORTING METHOD This study was reported in accordance with the Standards for Reporting Qualitative Research.
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Affiliation(s)
- Matilda Appelgren
- Department of Molecular Medicine and SurgeryKarolinska InstitutetStockholmSweden
- Department of SurgeryCapio St Göran's HospitalStockholmSweden
| | - Yvonne Wengström
- Department of Neurobiology, Care Sciences and Society, Division of NursingKarolinska InstitutetStockholmSweden
- Karolinska Comprehensive Cancer CenterKarolinska University HospitalStockholmSweden
- Department of Breast, Endocrine Tumors and SarcomaKarolinska University HospitalStockholmSweden
| | - Jana de Boniface
- Department of Molecular Medicine and SurgeryKarolinska InstitutetStockholmSweden
- Department of SurgeryCapio St Göran's HospitalStockholmSweden
| | - Helena Sackey
- Department of Molecular Medicine and SurgeryKarolinska InstitutetStockholmSweden
- Karolinska Comprehensive Cancer CenterKarolinska University HospitalStockholmSweden
- Department of Breast, Endocrine Tumors and SarcomaKarolinska University HospitalStockholmSweden
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Dinapoli L, Caliandro M, Chiesa S, Marconi E, Capocchiano ND, Mazzarella C, Bartoli FB, Bracci S, Balducci M, Chieffo DPR, Fiorentino A, Valentini V, Tagliaferri L, Gambacorta MA, Dinapoli N. Resilience and spiritual well-being as resources for coping with radiotherapy and surviving in patients with glioblastoma. Palliat Support Care 2024; 23:e10. [PMID: 39497355 DOI: 10.1017/s1478951524001111] [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: 01/16/2025]
Abstract
OBJECTIVES The primary aims of this multicenter, prospective observational study were to investigate spiritual well-being, resilience, and psychosocial distress in an Italian sample of glioblastoma patients undergoing radiochemotherapy. The secondary aim was to explore the influence of demographic, clinical, and psychological characteristics on survival. METHODS The assessment was conducted only once, within the first week of radiochemotherapy treatment. Spiritual well-being was evaluated by the Functional Assessment of Chronic Illness Therapy-Spiritual Well-being (FACIT-Sp-12), and religious/spiritual beliefs and practices were evaluated by the System of Belief Inventory. Resilience was evaluated by the Connor-Davidson Resilience Scale (CD-RISC). Psychosocial distress was evaluated the by Distress Thermometer and Hospital Anxiety Depression Scale. We conducted an univariable analysis of overall survival (OS) using data from the most recent follow-up available, considering demographic and clinical variables that could influence survival. Follow-up was defined as either the time of death or the latest follow-up visit recorded. RESULTS We recruited 104 patients, and the median follow-up time was 18.3 months. "Distressed" patients had lower scores than "not distressed" patients on the FACIT-Sp-12 and CD-RISC. While OS was not significant according to the FACIT-Sp-12 threshold, the Kaplan-Meier log-rank test was 0.05 according to the CD-RISC threshold. Among demographic variables, age showed significant associations with OS (p = 0.011). Resilience showed significant associations with OS (p = 0.025). SIGNIFICANCE OF RESULTS Data showed that high spiritual well-being was associated with high resilience and an absence of psychosocial distress in our sample of glioblastoma patients undergoing radiochemotherapy. Patients with greater resilience survived longer than those with lesser resilience. Profiling spiritual well-being and resilience in glioblastoma patients undergoing radiochemotherapy can be seen as a resource to identify novel characteristics to improve clinical take-in-charge of glioblastoma patients.
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Affiliation(s)
- Loredana Dinapoli
- UOS di Psicologia Clinica, Fondazione Policlinico Universitario A. Gemelli IRCCS, Rome, Italy
| | - Morena Caliandro
- Dipartimento di Radioterapia Oncologica, Ente Ecclesiastico Ospedale Generale Regionale F. Miulli, Acquaviva delle Fonti(BA), Italy
| | - Silvia Chiesa
- UOC di Radioterapia Oncologica, Dipartimento Diagnostica per Immagini, Radioterapia Oncologica ed Ematologia, Fondazione Policlinico Universitario A. Gemelli IRCCS, Rome, Italy
| | - Elisa Marconi
- UOS di Psicologia Clinica, Fondazione Policlinico Universitario A. Gemelli IRCCS, Rome, Italy
| | - Nikola Dino Capocchiano
- UOC di Radioterapia Oncologica, Dipartimento Diagnostica per Immagini, Radioterapia Oncologica ed Ematologia, Fondazione Policlinico Universitario A. Gemelli IRCCS, Rome, Italy
| | - Ciro Mazzarella
- UOC di Radioterapia Oncologica, Dipartimento Diagnostica per Immagini, Radioterapia Oncologica ed Ematologia, Fondazione Policlinico Universitario A. Gemelli IRCCS, Rome, Italy
| | - Francesco Beghella Bartoli
- UOC di Radioterapia Oncologica, Dipartimento Diagnostica per Immagini, Radioterapia Oncologica ed Ematologia, Fondazione Policlinico Universitario A. Gemelli IRCCS, Rome, Italy
| | - Serena Bracci
- UOC di Radioterapia Oncologica, Dipartimento Diagnostica per Immagini, Radioterapia Oncologica ed Ematologia, Fondazione Policlinico Universitario A. Gemelli IRCCS, Rome, Italy
| | - Mario Balducci
- UOC di Radioterapia Oncologica, Dipartimento Diagnostica per Immagini, Radioterapia Oncologica ed Ematologia, Fondazione Policlinico Universitario A. Gemelli IRCCS, Rome, Italy
| | - Daniela Pia Rosaria Chieffo
- UOS di Psicologia Clinica, Fondazione Policlinico Universitario A. Gemelli IRCCS, Rome, Italy
- Istituto di Scienze della Vita e di Sanità Pubblica, Università Cattolica del Sacro Cuore, Rome, Italy
| | - Alba Fiorentino
- Dipartimento di Radioterapia Oncologica, Ente Ecclesiastico Ospedale Generale Regionale F. Miulli, Acquaviva delle Fonti(BA), Italy
- Dipartimento di Medicina, Università LUM, Casamassima(BA), Italy
| | - Vincenzo Valentini
- Centro di Eccellenza Oncologia Radioterapica, Medica e Diagnostica per Immagini, Ospedale Isola Tiberina-Gemelli Isola, Rome, Italy
| | - Luca Tagliaferri
- UOC di Radioterapia Oncologica, Dipartimento Diagnostica per Immagini, Radioterapia Oncologica ed Ematologia, Fondazione Policlinico Universitario A. Gemelli IRCCS, Rome, Italy
- Università Cattolica del Sacro Cuore, Istituto di Radiologia, Rome, Italy
| | - Maria Antonietta Gambacorta
- UOC di Radioterapia Oncologica, Dipartimento Diagnostica per Immagini, Radioterapia Oncologica ed Ematologia, Fondazione Policlinico Universitario A. Gemelli IRCCS, Rome, Italy
- Università Cattolica del Sacro Cuore, Istituto di Radiologia, Rome, Italy
| | - Nicola Dinapoli
- UOC di Radioterapia Oncologica, Dipartimento Diagnostica per Immagini, Radioterapia Oncologica ed Ematologia, Fondazione Policlinico Universitario A. Gemelli IRCCS, Rome, Italy
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Mehta NH, Prajapati M, Aeleti R, Kinariwala K, Ohri K, McCabe S, Buller Z, Leskinen S, Nawabi NL, Bhatt V, Yerigeri K, Babaria V. The Power of a Belief System: A Systematic Qualitative Synthesis of Spiritual Care for Patients with Brain Tumors. J Clin Med 2024; 13:4871. [PMID: 39201013 PMCID: PMC11355862 DOI: 10.3390/jcm13164871] [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: 07/30/2024] [Revised: 08/13/2024] [Accepted: 08/16/2024] [Indexed: 09/02/2024] Open
Abstract
Background: Diagnosis with a brain tumor is a critical event in the lives of patients and their families due to poor medical prognoses and complex clinical care. Spiritual care interventions have been known to have meaningful effects in morbid diagnoses and palliative medicine, but their role in the neuro-oncologic patient's experience is poorly understood. This systematic review explores the role of spirituality and its relevance to patient care in the diverse setting of brain tumors. Methods: A comprehensive systematic review was conducted following PRISMA-SR guidelines. PUBMED was queried for studies on spirituality and neuro-oncology. Identified studies included RCTs, interviews, surveys, and case reports that examined spirituality in neuro-oncological clinical care, quality of life, and patient experience. Of 214 articles identified, 21 studies met the inclusion criteria, and the results were narratively synthesized. Results: Spirituality may play a significant role in mental well-being by reconciling existential questions faced by both patients and caregivers, and can serve as a valuable resource to improve mental well-being and reduce rates of palliative caregiver burnout. However, the paucity of studies examining the education and integration of spiritual awareness within the clinical literature warrants further study. Conclusions: While spiritual care interventions may improve the quality of life and mental wellness of patients and their caregivers, it is unclear how spiritual awareness and education should best be implemented. Further research is needed to better understand how key components of spiritual awareness can be integrated into medical education to deepen the patient-physician relationship and improve clinical experiences.
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Affiliation(s)
- Neel H. Mehta
- Department of Neurosurgery, Massachusetts General Hospital and Harvard Medical School, Boston, MA 02115, USA
| | - Megh Prajapati
- Department of Biomedical Engineering, Cornell University, Ithaca, NY 14850, USA;
| | - Rishi Aeleti
- Department of Biology, Cornell University, Ithaca, NY 14850, USA;
| | - Kush Kinariwala
- Texas College of Osteopathic Medicine, Fort Worth, TX 7107, USA;
| | - Karina Ohri
- Department of Pediatrics, Norton College of Medicine, SUNY Upstate, Syracuse, NY 13210, USA;
| | - Sean McCabe
- Division of Hematology and Oncology, Department of Medicine, Massachusetts General Hospital Cancer Center, Boston, MA 02114, USA;
| | - Zachary Buller
- Department of Chemistry, Harvard University, Cambridge, MA 02138, USA;
| | - Sandra Leskinen
- State University of New York Downstate Medical Center, New York, NY 11203, USA;
| | - Noah L. Nawabi
- College of Medicine, Medical University of South Carolina, Charleston, SC 29425, USA;
| | - Vatsal Bhatt
- Department of Medicine, Brigham and Women’s Hospital, Boston, MA 02115, USA;
| | - Keval Yerigeri
- Department of Internal Medicine-Pediatrics, Case Western Reserve University/The MetroHealth System, Cleveland, OH 44109, USA
| | - Vivek Babaria
- Orange County Spine and Sports, Interventional Physiatry, Newport Beach, CA 92660, USA;
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Nicol C, Pinkham MB, Lion K, Foote M, McBean A, Higgins M, Conlon E, Ownsworth T. Individuals' perceptions of health and well-being in the context of stereotactic radiosurgery for benign brain tumour: A longitudinal qualitative investigation. Neuropsychol Rehabil 2024; 34:244-267. [PMID: 36927243 DOI: 10.1080/09602011.2023.2181190] [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: 08/28/2022] [Accepted: 02/10/2023] [Indexed: 03/18/2023]
Abstract
BACKGROUND AND OBJECTIVES Treatment-related outcomes after Gamma Knife Stereotactic Radiosurgery (GKSRS) for benign brain tumour are well-established; yet patient reported outcomes have been largely overlooked. This study explored individuals' perspectives of their health and well-being prior to and following GKSRS. METHOD Twenty adults (65% female) aged 24-71 years with benign brain tumour were recruited from a major metropolitan hospital and assessed approximately one week prior to, two weeks after, and at three months following GKSRS. They completed telephone-based interviews focusing on general health, symptoms, and well-being. Interviews were transcribed and analysed using thematic analysis. RESULTS Three major themes characterized individuals' perceptions of their health and well-being. "Understanding my Illness and Treatment" reflected individuals' efforts to make sense of their illness and symptoms to reduce ambiguity and increase sense of control. "Experiencing Gamma Knife" related to expectations of the procedure, outcomes, daily impacts, and emotional reactions. "Adjusting one's Mindset and Coping" characterised how peoples' approaches to coping with their illness were altered over time. CONCLUSIONS Coping and adjustment is highly individualistic in the context of GKSRS. Over time, most individuals were able to make sense of their illness, adjust their mindset and utilize behavioural strategies and support systems to cope with the long-term effects.
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Affiliation(s)
- Chelsea Nicol
- School of Applied Psychology, Griffith University, Mount Gravatt, Australia
- The Hopkins Centre, Menzies Health Institute of Queensland, Griffith University, Mount Gravatt, Australia
| | - Mark B Pinkham
- School of Medicine, University of Queensland, Brisbane, Australia
- Gamma Knife Centre of Queensland, Princess Alexandra Hospital, Woolloongabba, Australia
| | - Katarzyna Lion
- School of Applied Psychology, Griffith University, Mount Gravatt, Australia
- The Hopkins Centre, Menzies Health Institute of Queensland, Griffith University, Mount Gravatt, Australia
| | - Matthew Foote
- School of Medicine, University of Queensland, Brisbane, Australia
- Gamma Knife Centre of Queensland, Princess Alexandra Hospital, Woolloongabba, Australia
| | - Angela McBean
- Gamma Knife Centre of Queensland, Princess Alexandra Hospital, Woolloongabba, Australia
| | - Mary Higgins
- School of Applied Psychology, Griffith University, Mount Gravatt, Australia
| | - Elizabeth Conlon
- School of Applied Psychology, Griffith University, Mount Gravatt, Australia
| | - Tamara Ownsworth
- School of Applied Psychology, Griffith University, Mount Gravatt, Australia
- The Hopkins Centre, Menzies Health Institute of Queensland, Griffith University, Mount Gravatt, Australia
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Fiddimore E, Harrop E, Nelson A, Sivell S. "I don't want to hear statistics, I want real life stories": Systematic review and thematic synthesis of patient and caregiver experiences of Proton Beam Therapy. J Psychosoc Oncol 2022; 41:434-456. [PMID: 37155324 DOI: 10.1080/07347332.2022.2136997] [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: 11/06/2022]
Abstract
PROBLEM IDENTIFICATION Proton Beam Therapy (PBT) is an advanced form of radiotherapy, yet little evidence exists on patient experience to inform decision making and improve future care. We thematically synthesized the qualitative evidence of patient and caregivers' perceptions and experiences of PBT. LITERATURE SEARCH Five electronic databases were systematically searched, using Medical Subject Headings (MeSH) terms and keywords. Two reviewers independently screened search results for qualitative studies relating to patients' and caregivers' experiences of PBT. The search generated 4,020 records, of which nine were eligible. Study quality (assessed by CASP checklist) varied. DATA SYNTHESIS Qualitative results were analyzed using thematic synthesis. Three main themes were generated: decision making and perceptions, living in the PBT "bubble," and coping with the cancer treatment journey. CONCLUSIONS PBT is not yet widely accessible worldwide, which uniquely influences the patient experience. Our review uncovers areas PBT providers could target to improve patient-centered care; however, additional primary qualitative research is recommended.
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Affiliation(s)
- Emma Fiddimore
- iBSc in Population Medicine, School of Medicine, Cardiff University, Cardiff, UK
| | - Emily Harrop
- Marie Curie Palliative Care Research Centre, Division of Population Medicine, School of Medicine, Cardiff University, Cardiff, UK
| | - Annmarie Nelson
- Marie Curie Palliative Care Research Centre, Division of Population Medicine, School of Medicine, Cardiff University, Cardiff, UK
| | - Stephanie Sivell
- Marie Curie Palliative Care Research Centre, Division of Population Medicine, School of Medicine, Cardiff University, Cardiff, UK
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Lien AW, Rohde G. Coping in the role as next of kin of a person with a brain tumour: a qualitative metasynthesis. BMJ Open 2022; 12:e052872. [PMID: 36691153 PMCID: PMC9445781 DOI: 10.1136/bmjopen-2021-052872] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 04/29/2021] [Accepted: 07/20/2022] [Indexed: 01/26/2023] Open
Abstract
OBJECTIVE Being the next of kin of a person with a brain tumour is a stressful experience. For many, being a next of kin involves fear, insecurity and overwhelming responsibility. The purpose of this study was to identify and synthesise qualitative original studies that explore coping in the role as next of kin of a person with a brain tumour. METHODS A qualitative metasynthesis guided by Sandelowski and Barroso's guidelines was used. The databases Medline, CHINAL and PsycINFO were searched for studies from January 2000 to 18 January 2022. Inclusion criteria were qualitative original studies that aimed to explore coping experience by the next of kin of a person with brain tumour. The next of kin had to be 18 years of age or older. RESULTS Of a total of 1476 screened records data from 20 studies, including 342 participants (207 females, 81 males and 54 unclassified) were analysed into metasummaries and a metasynthesis. The metasynthesis revealed that the next of kin coping experiences were characterised by two main themes: (1) coping factors within the next of kin and as a support system, such as their personal characteristics, perceiving the role as meaningful, having a support system, and hope and religion; (2) coping strategies-control and proactivity, including regaining control, being proactive and acceptance. CONCLUSION Next of kin of patients with brain tumours used coping factors and coping strategies gathered within themselves and in their surroundings to handle the situation and their role. It is important that healthcare professionals suggest and facilitate these coping factors and strategies because this may reduce stress and make the role of next of kin more manageable.
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Affiliation(s)
| | - Gudrun Rohde
- Faculty of Health and Sport Sciences, University of Agder, Kristiansand, Norway
- Marie Currie Palliative Research Department, University College London, London, UK
- Department of Clinical Research, Sorlandet Hospital, Kristiansand, Norway
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Escritt K, Mann M, Nelson A, Harrop E. Hope and meaning-making in phase 1 oncology trials: a systematic review and thematic synthesis of qualitative evidence on patient-participant experiences. Trials 2022; 23:409. [PMID: 35578308 PMCID: PMC9112562 DOI: 10.1186/s13063-022-06306-9] [Citation(s) in RCA: 18] [Impact Index Per Article: 6.0] [Reference Citation Analysis] [Abstract] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 01/13/2022] [Accepted: 04/13/2022] [Indexed: 11/24/2022] Open
Abstract
Background Phase 1 drug trials are popular treatment options for patients with advanced disease, despite the greater levels of uncertainty associated with them. However, their meaning and consequences for patient-participants remains under-explored. This review synthesises the qualitative evidence of patients’ experiences of participating in phase 1 oncology trials, exploring their decisions to take part and the impacts of these trials on patient wellbeing. Methods A comprehensive literature search involving medical subject headings (MeSH) and keywords was undertaken in the following databases: MEDLINE, EMBASE, PsycINFO, Scopus, CINAHL, and Cochrane CENTRAL, with supplementary searches also conducted. Studies were independently screened for inclusion by two researchers. Included studies were critically appraised and data extracted using standardised forms. Qualitative results were analysed using thematic synthesis. Results Three main themes were identified across 13 studies: decision-making and joining the trial; experiences of taking part in the trial and hope and coping. Patients primarily joined trials hoping for therapeutic benefits, sentiments which prevailed and shaped their experiences across their trial journey. Rather than indicate therapeutic misconception based on poor understanding, patient perspectives more commonly pointed to differences between hope and expectation and cultural narratives of staying positive, trying everything and trusting in experts. Conclusions These findings challenge information-based models of consent, favouring coping frameworks which account for the role of hope and meaning-making during serious illness. Personalised consideration of existential and quality-of-life matters before and during trials is recommended, including palliative and supportive care alternatives to active treatment. Review Registration The review was registered with PROSPERO international prospective register of systematic reviews (CRD 42020163250). Supplementary Information The online version contains supplementary material available at 10.1186/s13063-022-06306-9.
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Zamanian H, Amini-Tehrani M, Jalali Z, Daryaafzoon M, Ramezani F, Malek N, Adabimohazab M, Hozouri R, Rafiei Taghanaky F. Stigma and Quality of Life in Women With Breast Cancer: Mediation and Moderation Model of Social Support, Sense of Coherence, and Coping Strategies. Front Psychol 2022; 13:657992. [PMID: 35237203 PMCID: PMC8882621 DOI: 10.3389/fpsyg.2022.657992] [Citation(s) in RCA: 10] [Impact Index Per Article: 3.3] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 01/24/2021] [Accepted: 01/12/2022] [Indexed: 01/02/2023] Open
Abstract
Objectives The breast cancer stigma affects Health-related quality of life (HRQoL), while general resilience resources (GRRs), namely, sense of coherence (SOC), social support, and coping skills, are thought to alleviate this effect. The study aimed to explore the mediating/moderation role of GRRs in the relationship between stigma and HRQoL and its dimensions in Iranian patients with breast cancer. Methods In this cross-sectional study, Stigma Scale for Chronic Illness 8-item version (SSCI-8), SOC-13, Medical Outcome Survey- Social Support Scale (MOS-SSS), Brief COPE, and Functional Assessment of Cancer Therapy-Breast (FACT-B) were investigated in a convenience sample of Iranian women with confirmed non-metastatic breast cancer. Following the establishment of correlations using Pearson's correlation, single and parallel mediation analysis and moderation analysis were conducted to determine the extent to which each GRR might be impacted by stigma or decrease the adverse impact of stigma on HRQoL. Results An analysis of 221 women (response rate of 87.5%) with the mean age of 47.14 (9.13) showed that stigma was negatively correlated to all HRQoL's dimensions (r = -0.27∼0.51, p < 0.05), SOC (r = -0.26∼0.35, p < 0.01), social support (r = -0.23∼0.30, p < 0.01), and the bulk of coping skills. In the single mediation analysis, stigma affected all facets of SOC, all subscales of social support, and positive reframing, which partially reduced breast cancer HRQoL. Stigma affects general HRQoL through damaging meaningfulness, social support (except for tangible), and positive reframing. Meaningfulness was marked as the most impacted GRR in terms of all domains of HRQoL. In parallel mediation, reduced meaningfulness, total social support, and positive reframing were highlighted as the pathways of diminished breast cancer HRQoL. Moderation analysis indicated the higher levels of humor, behavioral disengagement, and use of instrumental support behaviors to be functional in protecting different dimensions of HRQoL, while the results were mixed for venting, especially in patients with mastectomy surgery. Conclusion While GRRs may be impacted by stigma, they exert a relatively small protective effect against the impact of stigma on HRQoL. This study provides some novel findings, but longitudinal studies are needed to further verify these before any causal conclusion or recommendations for health policy can be drawn.
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Affiliation(s)
- Hadi Zamanian
- Department of Health Education and Promotion, School of Health, Qom University of Medical Sciences, Qom, Iran.,Health Psychology and Behavior Medicine Research Group, Students' Scientific Research Center, Tehran University of Medical Sciences, Tehran, Iran
| | - Mohammadali Amini-Tehrani
- Health Psychology and Behavior Medicine Research Group, Students' Scientific Research Center, Tehran University of Medical Sciences, Tehran, Iran.,Department of Psychology, Faculty of Psychology and Education, University of Tehran, Tehran, Iran
| | - Zahra Jalali
- Connective Tissue Diseases Research Center, Tabriz University of Medical Sciences, Tabriz, Iran
| | - Mona Daryaafzoon
- Department of Psychology, Karaj Branch, Islamic Azad University, Karaj, Iran
| | - Fatemeh Ramezani
- Department of Psychology, Karaj Branch, Islamic Azad University, Karaj, Iran
| | - Negin Malek
- Department of Psychology, Karaj Branch, Islamic Azad University, Karaj, Iran
| | - Maede Adabimohazab
- Department of Psychology, Karaj Branch, Islamic Azad University, Karaj, Iran
| | - Roghayeh Hozouri
- Department of Psychology, Karaj Branch, Islamic Azad University, Karaj, Iran
| | - Fereshteh Rafiei Taghanaky
- Health Psychology and Behavior Medicine Research Group, Students' Scientific Research Center, Tehran University of Medical Sciences, Tehran, Iran
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Demonstrating the importance of cultural considerations at end of life utilizing the perspective of Indian patients with cancer. Support Care Cancer 2021; 30:2515-2525. [PMID: 34791519 DOI: 10.1007/s00520-021-06656-1] [Citation(s) in RCA: 2] [Impact Index Per Article: 0.5] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 07/12/2021] [Accepted: 10/25/2021] [Indexed: 10/19/2022]
Abstract
PURPOSE This study aimed to understand Indian cancer patients' hopes and beliefs about the end of life, particularly focusing on how this informed their preferences regarding end-of-life treatment. In India, individuals' lives are mainly guided by culturally driven practices of doing right by one's family and believing death is predetermined. METHODS Indian patients (25) diagnosed with advanced incurable cancer and aware of their prognosis participated in semi-structured interviews exploring their hopes as they approached the end of life. The interview also sought to understand patients' views and beliefs about do-not-resuscitate (DNR) orders and euthanasia. The interviews were transcribed and analysed using interpretative phenomenological analysis. RESULTS Two major themes were identified: (i) a desire for living or dying comprising sub-themes of perceptions of current responsibilities, and having a fighting spirit versus feelings of despair, and (ii) God was the ultimate decision-maker of life and death. Furthermore, patients understood that a do-not-resuscitate order meant euthanasia and responded accordingly. Some patients reported hoping for death due to the pain and resultant suffering. However, patients did not talk about euthanasia openly, instead choosing to describe it within a larger framework of life and death. CONCLUSIONS Indian patients reaching the end of life valued their family responsibilities which determined their desire to live or die. However, all patients believed that God decided on their life and death. It is important to consider cultural perspectives on DNR or euthanasia and to address patients' pain management needs towards the end of life.
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Braun-Lewensohn O, Abu-Kaf S, Kalagy T. What factors explain anger and mental health during the COVID-19 pandemic? The case of Israeli society. World J Psychiatry 2021; 11:864-875. [PMID: 34733648 PMCID: PMC8546769 DOI: 10.5498/wjp.v11.i10.864] [Citation(s) in RCA: 5] [Impact Index Per Article: 1.3] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 04/25/2021] [Revised: 07/20/2021] [Accepted: 09/08/2021] [Indexed: 02/06/2023] Open
Abstract
BACKGROUND What factors affected the levels of anger and emotional distress experienced during the coronavirus disease 2019 (COVID-19) pandemic? We hypothesized that (1) sociodemographic factors and resiliency factors would partially explain psychological distress and anger, with stronger resiliency associated with lower levels of distress and anger; (2) women would report more trust in national leadership, as well as more psychological problems; (3) individuals of low socioeconomic status would report less resiliency, less trust in national leadership, and greater distress than individuals of higher socioeconomic status; and (4) hope would mediate the relationships between the other resiliency factors and both anger and distress. AIM To explore whether community resilience, hope, and trust in leaders were associated with lower levels of anger and emotional distress during the COVID-19 pandemic. METHODS For this observational study, data were gathered in Israel during the second wave of the COVID-19 pandemic, just before the Jewish New Year (mid-September 2020), as a second lockdown was announced. Data were gathered from 636 Israeli adults, who were recruited by the Midgam research panel. The participants filled out self-reported questionnaires including one on state anger, the Brief Symptom Inventory as a measure of mental-health problems (i.e., somatization, depression, and anxiety), and questionnaires about trust in the state's leaders, community resilience (CCRAM), and hope as measures of coping resources and resiliency. t-tests were used to explore differences between men and women and between those of lower and higher socioeconomic status. A hierarchical multiple regression analysis was then used to examine whether and how the sociodemographic and resiliency variables explained state anger and psychological distress. A Sobel test was used to evaluate the possible effects of hope on community resilience and trust in leadership in the context of both distress and anger. RESULTS Our results revealed differences between women and men in terms of anger and mental-health problems, but not in terms of coping resources. Women reported higher levels of both anger and mental-health problems. Participants of lower socioeconomic status reported more mental-health problems, more anger, and greater trust in the state's leaders; whereas those of higher socioeconomic status reported greater hope. Furthermore, hierarchical multiple regression analyses revealed that the sociodemographic factors of gender, age, and socioeconomic status, as well as community resilience, trust in the state's leaders, and hope explained mental health with a total of 19% of the variance and anger with a total of 33% of the variance. The Sobel tests showed that hope mediated the relationships between community resilience and mental health (z = 3.46, P < 0.001), community resilience and anger (z = 2.90, P < 0.01), and trust in leaders and anger (z = 3.26, P < 0.01), but did not affect the relationship between trust in leaders and mental health (z = 1.53, P > 0.05). CONCLUSION Personal and communal factors affect psychological distress. Personal resilience is an important factor that should be strengthened throughout life. Trust in leadership is important for citizens' mental health.
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Affiliation(s)
- Orna Braun-Lewensohn
- Department of Interdisciplinary Studies, Conflict Management & Resolution Program, Ben-Gurion University of the Negev, Beer Sheva 8410501, Israel, Israel
| | - Sarah Abu-Kaf
- Department of Interdisciplinary Studies, Conflict Management & Resolution Program, Ben-Gurion University of the Negev, Beer Sheva 8410501, Israel, Israel
| | - Tehila Kalagy
- Department of Public Policy and Management, Ben-Gurion University of the Negev, Beer Sheva 8410501, Israel, Israel
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11
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de Vries FE, Godthelp A, Spruit JR, Ruissen AM, Tesselaar MET, Boekhout AH. Coping with social consequences of disease-related symptoms in patients with a metastatic small intestinal neuroendocrine tumour: A qualitative study. J Neuroendocrinol 2021; 33:e12956. [PMID: 33733525 DOI: 10.1111/jne.12956] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.3] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 11/20/2020] [Revised: 02/01/2021] [Accepted: 02/09/2021] [Indexed: 12/20/2022]
Abstract
Patients with small intestine neuroendocrine tumours (SINETs) face various disease-related symptoms that can affect their social functioning and quality of life. The present study aimed to explore the social consequences of disease-related symptoms in patients with a metastatic SINET and to develop a theory on how these patients experience their disease. Patients were eligible when they were diagnosed with a metastatic SINET between 2009 and 2016 and were younger than 60 years of age during diagnosis, and had a good functional performance status. Semi-structured interviews were conducted between January and June 2018. Data were transcribed and analysed independently by two researchers using grounded theory. Data saturation was reached at 10 interviews and, in total, 12 patients participated. A core component that arose from the interviews was resilience in the face of social consequences of having a metastatic SINET. Prominent physical symptoms were fatigue, diarrhoea and flushes. All of these symptoms were associated with limitations to function in work-related and social activities, as well as feelings of embarrassment and shame. Adaptive strategies, such as careful planning, or focusing on the perspective to live well with a neuroendocrine tumour, helped patients to experience the consequences as less burdensome. Other helpful factors that were identified constituted social support, engaging in meaningful activities and financial stability. Patients with a metastatic SINET experienced social consequences of disease-related symptoms in daily life, although they were able to attenuate the burden of these consequences by using adaptive problem-based, emotion-based and meaning-based coping strategies. Clinicians could explore the perceived consequences and educate patients about adaptive strategies.
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Affiliation(s)
- Froukje E de Vries
- Department of Psychiatry and Centre for Quality of Life, Netherlands Cancer Institute, Amsterdam, The Netherlands
| | - Albertien Godthelp
- Department of Psychosocial Research and Epidemiology, Netherlands Cancer Institute, Amsterdam, The Netherlands
| | - Jocelyn R Spruit
- Department of Psychosocial Research and Epidemiology, Netherlands Cancer Institute, Amsterdam, The Netherlands
| | - Andrea M Ruissen
- Department of Psychiatry, Haaglanden Medisch Centrum, Den Haag, The Netherlands
| | - Margot E T Tesselaar
- Department of Medical Oncology, Netherlands Cancer Institute, Amsterdam, The Netherlands
| | - Annelies H Boekhout
- Department of Psychosocial Research and Epidemiology, Netherlands Cancer Institute, Amsterdam, The Netherlands
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12
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Braun-Lewensohn O, Abu-Kaf S, Kalagy T. Hope and Resilience During a Pandemic Among Three Cultural Groups in Israel: The Second Wave of Covid-19. Front Psychol 2021; 12:637349. [PMID: 33679564 PMCID: PMC7930000 DOI: 10.3389/fpsyg.2021.637349] [Citation(s) in RCA: 47] [Impact Index Per Article: 11.8] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 12/03/2020] [Accepted: 01/25/2021] [Indexed: 02/05/2023] Open
Abstract
The aim of this study was to explore the coping resources of hope and sense of coherence, which are rooted in positive-psychology theory, as potential resilience factors that might reduce the emotional distress experienced by adults from three cultural groups in Israel during the chronic-stress situation of a pandemic. The three cultural groups examined were secular Jews, Ultra-Orthodox Jews, and Arabs. We compared these cultural groups during the second wave of the Covid-19 pandemic, just before the Jewish New Year (mid-September 2020) as a second lockdown was announced. Data were gathered from 248 secular Jews, 243 Ultra-Orthodox Jews, and 203 Arabs, who were 18-70 years old (M = 37.14, SD = 12.62). The participants filled out self-reported questionnaires including the Brief Symptom Inventory as a measure of emotional/psychological distress (i.e., somatization, depression, and anxiety) and questionnaires about sense of coherence and different types of hope (i.e., intrapersonal, interpersonal, and transpersonal) as measures of coping resources and resiliency. Differences were found between the three groups in terms of several variables. The Arab participants reported the highest levels of emotional distress and the lowest levels of interpersonal and transpersonal hope; whereas the Ultra-Orthodox participants revealed the highest levels of sense of coherence and other resilience factors. A structural equation model revealed that, in addition to the sociodemographic factors, only sense of coherence and intrapersonal hope played significant roles in explaining emotional distress, explaining 60% of the reported distress among secular Jews, 41% among Ultra-Orthodox Jews, and 48% among Arabs. We discuss our findings in light of the salutogenic and hope theories. We will also discuss their relevancy to meaning-seeking and self-transcendence theory in the three cultural groups.
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Affiliation(s)
- Orna Braun-Lewensohn
- Conflict Management & Resolution Program, Department of Interdisciplinary Studies, Ben-Gurion University of the Negev, Beer Sheva, Israel
| | - Sarah Abu-Kaf
- Conflict Management & Resolution Program, Department of Interdisciplinary Studies, Ben-Gurion University of the Negev, Beer Sheva, Israel
| | - Tehila Kalagy
- Department of Public Policy & Management, Guilford Glazer Faculty of Business and Management, Ben-Gurion University of the Negev, Beer Sheva, Israel
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13
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Randazzo DM, McSherry F, Herndon JE, Affronti ML, Lipp ES, Miller ES, Woodring S, Healy P, Jackman J, Crouch B, Desjardins A, Ashley DM, Friedman HS, Peters KB. Spiritual well-being and its association with health-related quality of life in primary brain tumor patients. Neurooncol Pract 2021; 8:299-309. [PMID: 34055377 DOI: 10.1093/nop/npaa084] [Citation(s) in RCA: 2] [Impact Index Per Article: 0.5] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 12/14/2022] Open
Abstract
Background Spirituality can impact patients' attitudes and decisions about treatment and end-of-life care when coping with cancer. Previous studies documented health-related quality of life (HRQoL) and spiritual well-being (SWB) as positively correlated within a general cancer patient population, but little is known about their association in the primary brain tumor population. We sought to measure SWB in primary brain tumor patients and evaluate whether it was associated with HRQoL. Methods Six-hundred and six patients treated at The Preston Robert Tisch Brain Tumor Center at Duke between December 16, 2013 and February 28, 2014 with data in the PRoGREss registry are included in this retrospective analysis. Each patient completed the Functional Assessment of Chronic Illness Therapy-Spiritual Well-Being 12 (FACIT-Sp-12) and -Fatigue (FACIT-F), and the Functional Assessment of Cancer Therapy-General and -Brain (FACT-G and FACT-Br). Results Mean age was 49.1 years (SD = 13.5 years), male (N = 328, 54.1%), married (N = 404, 66.7%), at least college-educated (N = 381, 62.9%), and diagnosed with a high-grade glioma (N = 412, 68.0%). Multiple regression analyses were performed on both the FACT-G and the FACT-Br using the FACIT-Sp-12 sub-scales of Meaning/Peace and Faith, FACIT-F, belief in God or a higher power, prayer, gender, tumor grade, and Karnofsky Performance Status (KPS) as predictors. We found that greater SWB (measured by FACIT-Sp-12) was associated with better HRQoL (measured by FACT-G and FACT-Br; p < .0001). Conclusion The association between reported SWB and reported improved HRQoL emphasizes the importance of spirituality in primary brain tumor patients, suggesting SWB must be considered in strategies to improve HRQoL.
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Affiliation(s)
- Dina M Randazzo
- Department of Neurosurgery, The Preston Robert Tisch Brain Tumor Center, Duke University Medical Center, Durham, North Carolina, USA
| | - Frances McSherry
- Department of Biostatistics and Bioinformatics, Duke University School of Medicine, Durham, North Carolina, USA
| | - James E Herndon
- Department of Biostatistics and Bioinformatics, Duke University School of Medicine, Durham, North Carolina, USA
| | - Mary L Affronti
- Department of Neurosurgery, The Preston Robert Tisch Brain Tumor Center, Duke University Medical Center, Durham, North Carolina, USA.,Duke University School of Nursing, Duke University School of Medicine, Durham, North Carolina, USA
| | - Eric S Lipp
- Department of Neurosurgery, The Preston Robert Tisch Brain Tumor Center, Duke University Medical Center, Durham, North Carolina, USA
| | - Elizabeth S Miller
- Department of Neurosurgery, The Preston Robert Tisch Brain Tumor Center, Duke University Medical Center, Durham, North Carolina, USA
| | - Sarah Woodring
- Department of Neurosurgery, The Preston Robert Tisch Brain Tumor Center, Duke University Medical Center, Durham, North Carolina, USA
| | - Patrick Healy
- Department of Biostatistics and Bioinformatics, Duke University School of Medicine, Durham, North Carolina, USA
| | - Jennifer Jackman
- Department of Neurosurgery, The Preston Robert Tisch Brain Tumor Center, Duke University Medical Center, Durham, North Carolina, USA
| | - Brian Crouch
- Department of Neurosurgery, The Preston Robert Tisch Brain Tumor Center, Duke University Medical Center, Durham, North Carolina, USA
| | - Annick Desjardins
- Department of Neurosurgery, The Preston Robert Tisch Brain Tumor Center, Duke University Medical Center, Durham, North Carolina, USA
| | - David M Ashley
- Department of Neurosurgery, The Preston Robert Tisch Brain Tumor Center, Duke University Medical Center, Durham, North Carolina, USA
| | - Henry S Friedman
- Department of Neurosurgery, The Preston Robert Tisch Brain Tumor Center, Duke University Medical Center, Durham, North Carolina, USA
| | - Katherine B Peters
- Department of Neurosurgery, The Preston Robert Tisch Brain Tumor Center, Duke University Medical Center, Durham, North Carolina, USA
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Hvidt NC, Nielsen KT, Kørup AK, Prinds C, Hansen DG, Viftrup DT, Assing Hvidt E, Hammer ER, Falkø E, Locher F, Boelsbjerg HB, Wallin JA, Thomsen KF, Schrøder K, Moestrup L, Nissen RD, Stewart-Ferrer S, Stripp TK, Steenfeldt VØ, Søndergaard J, Wæhrens EE. What is spiritual care? Professional perspectives on the concept of spiritual care identified through group concept mapping. BMJ Open 2020; 10:e042142. [PMID: 33372078 PMCID: PMC7772306 DOI: 10.1136/bmjopen-2020-042142] [Citation(s) in RCA: 36] [Impact Index Per Article: 7.2] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 12/20/2022] Open
Abstract
OBJECTIVES The overall study aim was to synthesise understandings and experiences regarding the concept of spiritual care (SC). More specifically, to identify, organise and prioritise experiences with the way SC is conceived and practised by professionals in research and the clinic. DESIGN Group concept mapping (GCM). SETTING The study was conducted within a university setting in Denmark. PARTICIPANTS Researchers, students and clinicians working with SC on a daily basis in the clinic and/or through research participated in brainstorming (n=15), sorting (n=15), rating and validation (n=13). RESULTS Applying GCM, ideas were identified, organised and prioritised online. A total of 192 unique ideas of SC were identified and organised into six clusters. The results were discussed and interpreted at a validation meeting. Based on input from the validation meeting a conceptual model was developed. The model highlights three overall themes: (1) 'SC as an integral but overlooked aspect of healthcare' containing the two clusters SC as a part of healthcare and perceived significance; (2) 'delivering SC' containing the three clusters quality in attitude and action, relationship and help and support, and finally (3) 'the role of spirituality' containing a single cluster. CONCLUSION Because spirituality is predominantly seen as a fundamental aspect of each individual human being, particularly important during suffering, SC should be an integral aspect of healthcare, although it is challenging to handle. SC involves paying attention to patients' values and beliefs, requires adequate skills and is realised in a relationship between healthcare professional and patient founded on trust and confidence.
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Affiliation(s)
- Niels Christian Hvidt
- Research Unit of General Practice, Institute of Public Health, University of Southern Denmark, Odense, Denmark
- Academy of Geriatric Cancer Research (AgeCare), Odense University Hospital, Odense, Denmark
| | - Kristina Tomra Nielsen
- Department of Occupational Therapy, University College of Northern Denmark (UCN), Aalborg, Denmark
- The ADL Unit, The Parker Institute, Copenhagen University Hospital, Bispebjerg and Frederiksberg, Denmark
| | - Alex K Kørup
- Research Unit of General Practice, Institute of Public Health, University of Southern Denmark, Odense, Denmark
- Department of Mental Health Service Kolding-Vejle, Region of Southern Denmark, Vejle, Denmark
| | - Christina Prinds
- Clinical Institute, Syddansk Universitet Det Sundhedsvidenskabelige Fakultet, Odense, Denmark
- Research, University College South - Campus Haderslev, Haderslev, Denmark
| | - Dorte Gilså Hansen
- IRS, Center for Shared Decision Making, Lillebaelt Hospital, University of Southern Denmark, Vejle, Denmark
| | - Dorte Toudal Viftrup
- Research Unit of General Practice, Institute of Public Health, University of Southern Denmark, Odense, Denmark
| | - Elisabeth Assing Hvidt
- Research Unit of General Practice, Institute of Public Health, University of Southern Denmark, Odense, Denmark
| | | | - Erik Falkø
- Research Unit of General Practice, Institute of Public Health, University of Southern Denmark, Odense, Denmark
| | - Flemming Locher
- Research Unit of General Practice, Institute of Public Health, University of Southern Denmark, JELLING, Denmark
| | - Hanne Bess Boelsbjerg
- Interacting Minds Centre, Department of Clinical Medicine, Aarhus Universitet, Aarhus, Denmark
- Elective Surgery Center, Silkeborg Regional Hospital, Silkeborg, Midtjylland, Denmark
| | - Johan Albert Wallin
- Research Unit of General Practice, Institute of Public Health, University of Southern Denmark, Odense, Denmark
| | - Karsten Flemming Thomsen
- Research Unit of General Practice, Institute of Public Health, University of Southern Denmark, Odense, Denmark
| | - Katja Schrøder
- Department of Public Health, Syddansk Universitet, Odense, Denmark
| | - Lene Moestrup
- Health Science Research Center, University College Lillebaelt - Campus Odense, Odense, Denmark
| | - Ricko Damberg Nissen
- Research Unit of General Practice, Institute of Public Health, University of Southern Denmark, Odense, Denmark
| | - Sif Stewart-Ferrer
- Research Unit of General Practice, Institute of Public Health, University of Southern Denmark, Odense, Denmark
| | - Tobias Kvist Stripp
- Research Unit of General Practice, Institute of Public Health, University of Southern Denmark, Odense, Denmark
| | | | - Jens Søndergaard
- Research Unit of General Practice, Institute of Public Health, University of Southern Denmark, Odense, Denmark
| | - Eva Ejlersen Wæhrens
- The Research Initiative for Activity studies and Occupational Therapy, Research Unit of User Perspectives, Institute of Public Health, University of Southern Denmark, Odense, Denmark
- The ADL unit, Frederiksberg Hospital Parker Institute, Frederiksberg, Hovedstaden, Denmark
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15
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Rimmer B, Dutton L, Lewis J, Burns R, Gallagher P, Williams S, Araujo-Soares V, Finch T, Sharp L. Ways Ahead: developing a supported self-management programme for people living with low- and intermediate-grade gliomas - a protocol for a multi-method study. BMJ Open 2020; 10:e041465. [PMID: 32727741 PMCID: PMC7394298 DOI: 10.1136/bmjopen-2020-041465] [Citation(s) in RCA: 9] [Impact Index Per Article: 1.8] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 11/06/2022] Open
Abstract
INTRODUCTION Living with and beyond a diagnosis of a low- and intermediate-grade glioma (LIGG) can adversely impact many aspects of people's lives and their quality of life (QoL). In people with chronic conditions, self-management can improve QoL. This is especially true if people are supported to self-manage. Supported self-management programmes have been developed for several cancers, but the unique challenges experienced by LIGG survivors mean these programmes may not be readily transferable to this group. The Ways Ahead study aims to address this gap by exploring the needs of LIGG survivors to develop a prototype for a supported self-management programme tailored to this group. METHODS AND ANALYSIS Ways Ahead will follow three sequential phases, underpinned by a systematic review of self-management interventions in cancer. In phase 1, qualitative methods will be used to explore and understand the issues faced by LIGG survivors, as well as the barriers and facilitators to self-management. Three sets of interviews will be conducted with LIGG survivors, their informal carers and professionals. Thematic analysis will be conducted with reference to the Theoretical Domains Framework and Normalisation Process Theory. Phase 2 will involve co-production workshops to generate ideas for the design of a supported self-management programme. Workshop outputs will be translated into a design specification for a prototype programme. Finally, phase 3 will involve a health economic assessment to examine the feasibility and benefits of incorporating the proposed programme into the current survivorship care pathway. This prototype will then be ready for testing in a subsequent trial. ETHICS AND DISSEMINATION The study has been reviewed and approved by an National Health Service Research Ethics Committee (REC ref: 20/WA/0118). The findings will be disseminated through peer-reviewed journals, conference presentations, broadcast media, the study website, The Brain Tumour Charity and stakeholder engagement activities.
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Affiliation(s)
- Ben Rimmer
- Population Health Sciences Institute, Newcastle University Centre for Cancer, Newcastle University, Newcastle upon Tyne, UK
| | - Lizzie Dutton
- Population Health Sciences Institute, Newcastle University Centre for Cancer, Newcastle University, Newcastle upon Tyne, UK
| | - Joanne Lewis
- Newcastle upon Tyne Hospitals NHS Foundation Trust, Newcastle upon Tyne, UK
| | | | | | - Sophie Williams
- Newcastle upon Tyne Hospitals NHS Foundation Trust, Newcastle upon Tyne, UK
| | - Vera Araujo-Soares
- Population Health Sciences Institute, Newcastle University Centre for Cancer, Newcastle University, Newcastle upon Tyne, UK
| | - Tracy Finch
- Department of Nursing, Midwifery and Health, Northumbria University, Newcastle upon Tyne, UK
| | - Linda Sharp
- Population Health Sciences Institute, Newcastle University Centre for Cancer, Newcastle University, Newcastle upon Tyne, UK
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16
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Möllerberg M, Langegård U, Ohlsson‐Nevo E, Fransson P, Johansson B, Ahlberg K, Sjövall K. Managing an altered social context-Patients experiences of staying away from home while undergoing proton beam therapy. Nurs Open 2020; 7:1157-1163. [PMID: 32587735 PMCID: PMC7308677 DOI: 10.1002/nop2.490] [Citation(s) in RCA: 2] [Impact Index Per Article: 0.4] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Download PDF] [Journal Information] [Subscribe] [Scholar Register] [Received: 02/07/2020] [Accepted: 03/09/2020] [Indexed: 01/10/2023] Open
Abstract
Aim To illuminate the experience of an altered social context for patients with primary brain tumours living away from home while undergoing proton beam therapy. Design A descriptive, qualitative cross-sectional interview study. Methods Nineteen patients were interviewed between December 2015-August 2016, either during (N = 7) or before and after (N = 12) their proton beam therapy. A hermeneutical analysis was performed. Results Participants made adjustments to achieve control and well-being during the treatment period. The analysis also revealed two interrelated patterns that helped participants adjust: being part of the family from a distance and seeking affinity. Conclusion It is important that patients receiving treatment far from home find a way to remain a part of their family and find affinity in the altered social context. Health professionals can prepare patients for the treatment period and can implement interventions to promote well-being for both patients and their relatives.
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Affiliation(s)
| | - Ulrica Langegård
- Institute of Health and Care SciencesSahlgrenska AcademyUniversity of GothenburgGothenburgSweden
| | - Emma Ohlsson‐Nevo
- Faculty of Medicine and HealthUniversity Healthcare Research CentreÖrebro UniversityÖrebroSweden
| | - Per Fransson
- Department of NursingUmeå UniversityUmeåSweden
- Department of CancercentrumNorrlands University HospitalUmeåSweden
| | - Birgitta Johansson
- Experimental OncologyDepartment of Immunology, Genetics and PathologyUppsala UniversityUppsala University HospitalUppsalaSweden
| | - Karin Ahlberg
- Institute of Health and Care SciencesSahlgrenska AcademyUniversity of GothenburgGothenburgSweden
| | - Katarina Sjövall
- Department of OncologySkåne University HospitalLundSweden
- Department of OncologyLund UniversityLundSweden
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17
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Ferreira DH, Kochovska S, Honson A, Phillips JL, Currow DC. Two faces of the same coin: a qualitative study of patients' and carers' coexistence with chronic breathlessness associated with chronic obstructive pulmonary disease (COPD). BMC Palliat Care 2020; 19:64. [PMID: 32375747 PMCID: PMC7203967 DOI: 10.1186/s12904-020-00572-7] [Citation(s) in RCA: 22] [Impact Index Per Article: 4.4] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 12/22/2019] [Accepted: 05/01/2020] [Indexed: 11/10/2022] Open
Abstract
BACKGROUND Chronic breathlessness is a recognized clinical syndrome that severely impacts patients and carers, who become increasingly restricted in their daily activities. Often, patients become reliant on their carers, who are required to provide constant support. Although individual experiences of breathlessness have been previously investigated, there are few studies exploring contemporaneous experiences of breathlessness of the patient and their carer. This study aimed to understand the experience of severe chronic breathlessness in people with chronic obstructive pulmonary disease (COPD) from the perspective of the patient and carer unit. METHODS A qualitative study embedded in a randomised, placebo-controlled effectiveness study (RCT) of regular, low-dose (≤32 mg/day), sustained-release morphine for chronic breathlessness associated with COPD. Recruitment occurred between July 2017 and November 2018 in one respiratory and palliative care services, in South Australia. Participants were community-dwelling patients with COPD and severe breathlessness (modified Medical Research Council scale 3 or 4) and their carers. Separate semi-structured interviews were conducted with patients and carers, recorded and transcribed verbatim. Analysis was informed by grounded theory using a constant comparative approach. RESULTS From the 26 patients with a carer recruited for the RCT in South Australia, nine were interviewed in their homes. Six patients were men, median age 77 years. Carers were mostly women, who were their wives (n = 6), median age 70. Five themes emerged from the data: (1) shrinking world; (2) mutual adaptation; (3) co-management; (4) emotional coping; and (5) meaning in the face of death. CONCLUSION Chronic breathlessness is a systemic condition that permeates all aspects of the patient's and carer's lives. Working as a team, patients and carers manage chronic breathlessness to achieve maximal function and well-being. Patients and carers share many aspects of the experience of breathlessness, but the carer seems particularly susceptible to emotional distress. Future chronic breathlessness interventions should target the patient and the carer, both together and separately to address their common and individual needs. TRIAL REGISTRATION The main trial is registered (registration no. NCT02720822; posted March 28, 2016).
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Affiliation(s)
- Diana H Ferreira
- Discipline, Palliative and Supportive Services, Flinders University, GPO Box 2100, Adelaide, SA, 5001, Australia.
| | - Slavica Kochovska
- IMPACCT, Faculty of Health, University of Technology Sydney, Ultimo, New South Wales, 2007, Australia
| | - Aaron Honson
- Discipline, Palliative and Supportive Services, Flinders University, GPO Box 2100, Adelaide, SA, 5001, Australia
| | - Jane L Phillips
- IMPACCT, Faculty of Health, University of Technology Sydney, Ultimo, New South Wales, 2007, Australia
| | - David C Currow
- Discipline, Palliative and Supportive Services, Flinders University, GPO Box 2100, Adelaide, SA, 5001, Australia.,IMPACCT, Faculty of Health, University of Technology Sydney, Ultimo, New South Wales, 2007, Australia
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18
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Hedlund Å, Nordström T, Kristofferzon M, Nilsson A. New insights and access to resources change the perspective on life among persons with long-term illness-An interview study. Nurs Open 2019; 6:1580-1588. [PMID: 31660186 PMCID: PMC6805306 DOI: 10.1002/nop2.363] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Journal Information] [Subscribe] [Scholar Register] [Received: 06/30/2019] [Accepted: 08/05/2019] [Indexed: 11/10/2022] Open
Abstract
AIM The aim was to describe individuals' experiences of living with long-term illness. METHODS A qualitative approach with a descriptive design was used. Semi-structured interviews were conducted with 16 persons (50-80 years). They were also asked to self-rate their perceptions of their current health status and confidence in their ability to cope with everyday life. RESULTS One main theme was identified: new insights and access to resources change the perspective on life. Personal characteristics and support from others were advantageous in finding ways to deal with limitations related to the illness. Most of the persons experienced a changed approach to life, in that they now valued life more than they had before. However, some persons also experienced lost values and found it difficult to accept medications. The persons rated their current health status as slightly above average, but their confidence in their ability to cope with everyday life as high.
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Affiliation(s)
- Åsa Hedlund
- Department of Health and Caring SciencesUniversity of GävleGävleSweden
| | - Tina Nordström
- Department of Health and Caring SciencesUniversity of GävleGävleSweden
| | - Marja‐Leena Kristofferzon
- Department of Health and Caring SciencesUniversity of GävleGävleSweden
- Department of Public Health and Caring Sciences,Section of Caring SciencesUppsala UniversityUppsalaSweden
| | - Annika Nilsson
- Department of Health and Caring SciencesUniversity of GävleGävleSweden
- Department of Public Health and Caring Sciences,Section of Caring SciencesUppsala UniversityUppsalaSweden
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19
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Ownsworth T, Chambers S, Aitken JF, Foote M, Pinkham MB, Gordon LG, Lock G, Hanley B, Gardner T, Jones S, Robertson J, Shum D, Conlon E. Evaluation of a telehealth psychological support intervention for people with primary brain tumour and their family members: Study protocol for a randomised controlled trial. Eur J Cancer Care (Engl) 2019; 28:e13132. [DOI: 10.1111/ecc.13132] [Citation(s) in RCA: 9] [Impact Index Per Article: 1.5] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 11/26/2018] [Revised: 04/30/2019] [Accepted: 06/22/2019] [Indexed: 01/08/2023]
Affiliation(s)
- Tamara Ownsworth
- School of Applied Psychology, Menzies Health Institute Queensland Griffith University Brisbane Queensland Australia
| | - Suzanne Chambers
- University of Technology Sydney Sydney New South Wales Australia
- Menzies Health Institute Queensland Griffith University Southport Queensland Australia
- Australian and New Zealand Urogenital and Prostate Cancer (ANZUP) Trials Group Sydney New South Wales Australia
- Exercise Medicine Research Institute Edith Cowan University Perth Western Australia Australia
- Institute for Resilient Regions University of Southern Queensland Toowoomba Queensland Australia
| | - Joanne F. Aitken
- Menzies Health Institute Queensland Griffith University Southport Queensland Australia
- Institute for Resilient Regions University of Southern Queensland Toowoomba Queensland Australia
- Cancer Council Queensland Brisbane Queensland Australia
- School of Public Health University of Queensland Brisbane Queensland Australia
- School of Research–Public Health Queensland University of Technology Brisbane Queensland Australia
| | - Matthew Foote
- Department of Radiation Oncology Princess Alexandra Hospital Brisbane Queensland Australia
- School of Medicine University of Queensland Brisbane Queensland Australia
| | - Mark B. Pinkham
- Department of Radiation Oncology Princess Alexandra Hospital Brisbane Queensland Australia
- School of Medicine University of Queensland Brisbane Queensland Australia
| | - Louisa G. Gordon
- School of Public Health University of Queensland Brisbane Queensland Australia
- QIMR Berghofer Medical Research Institute Brisbane Queensland Australia
- School of Nursing Queensland University of Technology Brisbane Queensland Australia
| | - Gemma Lock
- Cancer Council Queensland Brisbane Queensland Australia
| | - Brigid Hanley
- Cancer Council Queensland Brisbane Queensland Australia
| | | | - Stephanie Jones
- School of Applied Psychology, Menzies Health Institute Queensland Griffith University Brisbane Queensland Australia
| | - Julia Robertson
- School of Applied Psychology, Menzies Health Institute Queensland Griffith University Brisbane Queensland Australia
| | - David Shum
- School of Applied Psychology, Menzies Health Institute Queensland Griffith University Brisbane Queensland Australia
- Department of Rehabilitation Sciences Hong Kong Polytechnic University Hong Kong China
| | - Elizabeth Conlon
- School of Applied Psychology, Menzies Health Institute Queensland Griffith University Brisbane Queensland Australia
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20
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Fenix J, Cherlin EJ, Prigerson HG, Johnson-Hurzeler R, Kasl SV, Bradley EH. Religiousness and Major Depression among Bereaved Family Caregivers: A 13–Month Follow-Up Study. J Palliat Care 2019. [DOI: 10.1177/082585970602200406] [Citation(s) in RCA: 30] [Impact Index Per Article: 5.0] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/15/2022]
Affiliation(s)
- J.B. Fenix
- Department of Epidemiology and Public Health, Yale School of Medicine, New Haven, Connecticut
| | - Emily J. Cherlin
- Department of Epidemiology and Public Health, Yale School of Medicine, New Haven, Connecticut
| | - Holly G. Prigerson
- Center of Psychooncology and Palliative Care Research, Dana-Farber Cancer Institute, and Department of Psychiatry, Brigham and Women's Hospital, Harvard Medical School, Boston, Massachusetts
| | - Rosemary Johnson-Hurzeler
- The Connecticut Hospice, and The John D. Thompson Hospice Institute for Education, Training, and Research, Branford, Connecticut
| | - Stanislav V. Kasl
- Department of Epidemiology and Public Health, Yale School of Medicine, New Haven, Connecticut
| | - Elizabeth H. Bradley
- Department of Epidemiology and Public Health, and The Robert Wood Johnson Clinical Scholars Program, Department of Medicine, Yale School of Medicine, New Haven, Connecticut, USA
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21
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Abstract
Background: Being diagnosed with cancer and undergoing its treatment are associated with substantial distress that can cause long-lasting negative psychological outcomes. Resilience is an individual's ability to maintain or restore relatively stable psychological and physical functioning when confronted with stressful life events and adversities. Posttraumatic growth (PTG) can be defined as positive life changes that result from major life crises or stressful events. Objectives: The aims of this study were to 1) investigate which factors can strengthen or weaken resilience and PTG in cancer patients and survivors; 2) explore the relationship between resilience and PTG, and mental health outcomes; and 3) discuss the impact and clinical implications of resilience and PTG on the process of recovery from cancer. Methods: A literature search was conducted, restricted to PubMed from inception until May 2018, utilizing the following key words: cancer, cancer patients, cancer survivors, resilience, posttraumatic growth, coping, social support, and distress. Results: Biological, personal, and most importantly social factors contribute to cancer patients' resilience and, consequently, to favorable psychological and treatment-related outcomes. PTG is an important phenomenon in the adjustment to cancer. From the literature included in this review, a model of resilience and PTG in cancer patients and survivors was developed. Conclusions: The cancer experience is associated with positive and negative life changes. Resilience and PTG are quantifiable and can be modified through psychological and pharmacological interventions. Promoting resilience and PTG should be a critical component of cancer care.
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Affiliation(s)
- Annina Seiler
- Department of Consultation-Liaison Psychiatry and Psychosomatic Medicine, University Hospital Zurich, Zurich, Switzerland
| | - Josef Jenewein
- Department of Consultation-Liaison Psychiatry and Psychosomatic Medicine, University Hospital Zurich, Zurich, Switzerland.,Clinic Zugersee, Center for Psychiatry and Psychotherapy, Oberwil-Zug, Switzerland
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22
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Sjöberg M, Beck I, Rasmussen BH, Edberg AK. Being disconnected from life: meanings of existential loneliness as narrated by frail older people. Aging Ment Health 2018; 22:1357-1364. [PMID: 28714734 DOI: 10.1080/13607863.2017.1348481] [Citation(s) in RCA: 51] [Impact Index Per Article: 7.3] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 10/19/2022]
Abstract
OBJECTIVES This study illuminated the meanings of existential loneliness (EL) as narrated by frail older people. METHOD Data were collected through individual narrative interviews with 23 people 76-101 years old receiving long-term care and services. A phenomenological hermeneutical analysis was performed, including a naïve reading and two structural analyses as a basis for a comprehensive understanding of EL. RESULT Four themes were identified related to meanings of EL: (1) being trapped in a frail and deteriorating body; (2) being met with indifference; (3) having nobody to share life with; and (4) lacking purpose and meaning. These intertwined themes were synthesized into a comprehensive understanding of EL as 'being disconnected from life'. CONCLUSION Illness and physical limitation affects access to the world. When being met with indifference and being unable to share one's thoughts and experiences of life with others, a sense of worthlessness is reinforced, triggering an experience of meaninglessness and EL, i.e. disconnection from life. It is urgent to develop support strategies that can be used by health care professionals to address older people in vulnerable situations, thereby facilitating connectedness.
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Affiliation(s)
- Marina Sjöberg
- a Department of Care Science, Faculty of Health and Society , Malmö University , Malmö , Sweden.,b Department of Health and Society, The Research Platform for Collaboration for Health , Kristianstad University , Kristianstad , Sweden
| | - Ingela Beck
- b Department of Health and Society, The Research Platform for Collaboration for Health , Kristianstad University , Kristianstad , Sweden.,c The Institute For Palliative Care , Region Skåne and Lund University , Lund , Sweden.,d Department of Clinical Sciences Lund, Division of Oncology, Faculty of Medicine , Lund University , Lund , Sweden
| | - Birgit H Rasmussen
- c The Institute For Palliative Care , Region Skåne and Lund University , Lund , Sweden.,e Department for Health Sciences, Faculty of Medicine, Unit of Older People's Health and Person Centred Care , Lund University , Lund , Sweden
| | - Anna-Karin Edberg
- b Department of Health and Society, The Research Platform for Collaboration for Health , Kristianstad University , Kristianstad , Sweden
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23
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Sacher M, Meixensberger J, Krupp W. Interaction of quality of life, mood and depression of patients and their informal caregivers after surgical treatment of high-grade glioma: a prospective study. J Neurooncol 2018; 140:367-375. [DOI: 10.1007/s11060-018-2962-x] [Citation(s) in RCA: 10] [Impact Index Per Article: 1.4] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 05/21/2018] [Accepted: 07/30/2018] [Indexed: 01/06/2023]
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24
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Baumstarck K, Chinot O, Tabouret E, Farina P, Barrié M, Campello C, Petrirena G, Hamidou Z, Auquier P. Coping strategies and quality of life: a longitudinal study of high-grade glioma patient-caregiver dyads. Health Qual Life Outcomes 2018; 16:157. [PMID: 30068395 PMCID: PMC6090679 DOI: 10.1186/s12955-018-0983-y] [Citation(s) in RCA: 20] [Impact Index Per Article: 2.9] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 01/08/2018] [Accepted: 07/24/2018] [Indexed: 12/13/2022] Open
Abstract
Background Among a sample of patient-informal caregiver dyads in the specific context of new diagnoses of high-grade glioma in the time-frame between diagnosis and the third month following diagnosis, we examine whether the coping strategies implemented by the patients and their caregivers influenced their own quality of life (QoL) and the QoL of their relatives. Methods Thirty-eight dyads with patients having recent diagnoses of high-grade glioma were involved in this longitudinal study. The self-reported data include QoL (Patient-Generated Index, EORTC QLQ-C30, and CareGiver Oncology Quality of Life), and coping strategies (BriefCope). Data were collected at T1 corresponding to the time-frame between diagnosis and postsurgical treatment initiation and T2 corresponding to the 3-month post-inclusion follow-up. Results Coping strategies based on social support and avoidance were the least used at baseline and the 3-month follow-up, both for patients and caregivers. At the 3-month follow-up, the use of social support at baseline was significantly related to lower scores of QoL for the patients and with higher QoL for the caregivers. For the patient, the use of problem-solving or positive thinking at baseline was not related to his/her QoL, while it was related to more satisfactory QoL scores for the caregiver. The use of avoidance at baseline was linked to a higher 3-month QoL for the patients and a lower 3-month QoL for the caregivers. Using the specific dyadic analyses (actor–partner interdependence model), the 3-month patient’s QoL was lower (β = − 0.322; p = 0.03) when the patient mobilized the social support strategy at baseline, but was higher(β = 0.631; p < 10− 3) when his/her informal caregiver used this strategy. After adjustment for sex, age, and baseline PGI score, the link between high use of the social support strategy at baseline by the caregiver and the patient’s 3-month QoL, remained present (positive partner effect; β =0.675; p < 10− 3). Conclusion The QoL for patients and their informal caregivers since the time of diagnosis is directly related to the use of coping strategies based on social support at time of diagnosis.
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Affiliation(s)
- Karine Baumstarck
- EA 3279 CEReSS - Health Service Research and Quality of Life Center, Aix Marseille Université, School of medicine - La Timone Medical Campus, 27 bd Jean Moulin, F-13385, Marseille, cedex 05, France. .,National Clinical research Quality of Life in Oncology Platform, Marseille, France.
| | - Olivier Chinot
- Department of Neuro-Oncology, Assistance Publique Hôpitaux de Marseille, Timone Hospital, 13005, Marseille, France
| | - Emeline Tabouret
- Department of Neuro-Oncology, Assistance Publique Hôpitaux de Marseille, Timone Hospital, 13005, Marseille, France
| | - Patrizia Farina
- Department of Neuro-Oncology, Assistance Publique Hôpitaux de Marseille, Timone Hospital, 13005, Marseille, France
| | - Marilyne Barrié
- Department of Neuro-Oncology, Assistance Publique Hôpitaux de Marseille, Timone Hospital, 13005, Marseille, France
| | - Chantal Campello
- Department of Neuro-Oncology, Assistance Publique Hôpitaux de Marseille, Timone Hospital, 13005, Marseille, France
| | - Gregorio Petrirena
- Department of Neuro-Oncology, Assistance Publique Hôpitaux de Marseille, Timone Hospital, 13005, Marseille, France
| | - Zeinab Hamidou
- EA 3279 CEReSS - Health Service Research and Quality of Life Center, Aix Marseille Université, School of medicine - La Timone Medical Campus, 27 bd Jean Moulin, F-13385, Marseille, cedex 05, France.,National Clinical research Quality of Life in Oncology Platform, Marseille, France
| | - Pascal Auquier
- EA 3279 CEReSS - Health Service Research and Quality of Life Center, Aix Marseille Université, School of medicine - La Timone Medical Campus, 27 bd Jean Moulin, F-13385, Marseille, cedex 05, France.,National Clinical research Quality of Life in Oncology Platform, Marseille, France
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25
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Lindholm K. Handling Stereotypes of Religious Professionals: Strategies Hospice Chaplains Use When Interacting with Patients and Families. THE JOURNAL OF PASTORAL CARE & COUNSELING : JPCC 2017; 71:284-290. [PMID: 29224526 DOI: 10.1177/1542305017744493] [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: 06/07/2023]
Abstract
Stereotypes of religious professionals can create barriers for those who provide spiritual/pastoral care. Through interviews and journal entries, hospice chaplains ( n = 45) identified the following stereotypes that affected their work: chaplains as people whom others try to impress, who only talk about spiritual and religious topics, who are male, and who try to convert others. Participants reported using a variety of communication strategies to counteract stereotypes and make meaningful connections with the people they serve.
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Affiliation(s)
- Kristin Lindholm
- Communication Department, 2845 Trinity International University , Deerfield, USA
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26
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Harrop E, Noble S, Edwards M, Sivell S, Moore B, Nelson A. Managing, making sense of and finding meaning in advanced illness: a qualitative exploration of the coping and wellbeing experiences of patients with lung cancer. SOCIOLOGY OF HEALTH & ILLNESS 2017; 39:1448-1464. [PMID: 29044627 PMCID: PMC5765489 DOI: 10.1111/1467-9566.12601] [Citation(s) in RCA: 31] [Impact Index Per Article: 3.9] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Subscribe] [Scholar Register] [Indexed: 05/25/2023]
Abstract
Coping plays an essential role in maintaining the wellbeing of patients with cancer. A number of different coping responses and strategies have been identified in the literature. The value and relevance of meaning based coping theory has also been emphasised, including Antonovosky's Sense of Coherence (SoC) theory. Ten patients with advanced lung cancer were interviewed up to three times. A total of twenty in depth interviews were carried out, fully transcribed and data were analysed following a methodology of Interpretative Phenomenological Analysis. Three broad domains were identified to categorise the core life concerns of participants; making sense of and managing one's illness; maintaining daily life and relationships and confronting the future. Within these domains multiple coping themes are identified, which to varying degrees help to maintain patient wellbeing and quality of life. This article considers the relevance of SoC theory for understanding the coping experiences of patients with advanced cancer, and identifies resources and factors likely to support patient coping, with implications for health and social care services.
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Affiliation(s)
- Emily Harrop
- Marie Curie Palliative Care Research CentreDivision of Population MedicineSchool of Medicine, Cardiff UniversityCardiffUK
| | - Simon Noble
- Marie Curie Palliative Care Research CentreDivision of Population MedicineSchool of Medicine, Cardiff UniversityCardiffUK
| | - Michelle Edwards
- Marie Curie Palliative Care Research CentreDivision of Population MedicineSchool of Medicine, Cardiff UniversityCardiffUK
| | - Stephanie Sivell
- Marie Curie Palliative Care Research CentreDivision of Population MedicineSchool of Medicine, Cardiff UniversityCardiffUK
| | - Barbara Moore
- Health and Care Research Wales Support CentreCardiffUK
| | - Annmarie Nelson
- Marie Curie Palliative Care Research CentreDivision of Population MedicineSchool of Medicine, Cardiff UniversityCardiffUK
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27
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Kövi Z, Odler V, Gacsályi S, Hittner JB, Hevesi K, Hübner A, Aluja A. Sense of coherence as a mediator between personality and depression. PERSONALITY AND INDIVIDUAL DIFFERENCES 2017. [DOI: 10.1016/j.paid.2017.03.064] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.1] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 10/19/2022]
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28
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Cubis L, Ownsworth T, Pinkham MB, Chambers S. The social trajectory of brain tumor: a qualitative metasynthesis. Disabil Rehabil 2017; 40:1857-1869. [PMID: 28420297 DOI: 10.1080/09638288.2017.1315183] [Citation(s) in RCA: 34] [Impact Index Per Article: 4.3] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 10/19/2022]
Abstract
PURPOSE Research indicates that strong social ties can buffer the adverse effects of chronic illness on psychological well-being. Brain tumor typically leads to serious functional impairments that affect relationships and reduce social participation. This metasynthesis aimed to identify, appraise and integrate the findings of qualitative studies that reveal the impact of brain tumor on social networks. METHODS Four major databases (PubMed, CINAHL, Cochrane Library and PsycINFO) were systematically searched from inception to September 2016 for qualitative studies that reported findings on the impact of primary brain tumor on social networks during adulthood. Twenty-one eligible studies were identified and appraised according to the Consolidated Criteria for Reporting Qualitative Research. Key findings of these studies were integrated to form superordinate themes. RESULTS The metasynthesis revealed the core themes of: 1) Life disrupted; 2) Navigating the new reality of life; and 3) Social survivorship versus separation. CONCLUSIONS Multiple changes typically occur across the social trajectory of brain tumor, including a loss of pre-illness networks and the emergence of new ones. Understanding the barriers and facilitators for maintaining social connection may guide interventions for strengthening social networks and enhancing well-being in the context of brain tumor. Implications for rehabilitation Social networks and roles are disrupted throughout the entire trajectory of living with brain tumor Physical, cognitive and psychological factors represent barriers to social integration Barriers to social integration may be addressed by supportive care interventions Compensatory strategies, adjusting goals and expectations, educating friends and family and accepting support from others facilitate social reintegration throughout the trajectory of living with brain tumor.
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Affiliation(s)
- Lee Cubis
- a School of Applied Psychology , Menzies Health Institute Queensland, Griffith University , Mt Gravatt , Australia
| | - Tamara Ownsworth
- a School of Applied Psychology , Menzies Health Institute Queensland, Griffith University , Mt Gravatt , Australia
| | - Mark B Pinkham
- b Princess Alexandra Hospital , University of Queensland , Woolloongabba , Australia
| | - Suzanne Chambers
- c Menzies Health Institute , Queensland , Nathan , Australia.,d Cancer Council Queensland , Brisbane , Australia
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29
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Hemberg J. The dark corner of the heart - understanding and embracing suffering as portrayed by adults. Scand J Caring Sci 2017; 31:995-1002. [DOI: 10.1111/scs.12424] [Citation(s) in RCA: 6] [Impact Index Per Article: 0.8] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 08/16/2016] [Accepted: 11/29/2016] [Indexed: 12/01/2022]
Affiliation(s)
- Jessica Hemberg
- Department of Caring Sciences; Faculty of Education and Welfare Studies; Åbo Akademi University; Vaasa Finland
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30
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Armstrong TS, Bishof AM, Brown PD, Klein M, Taphoorn MJB, Theodore-Oklota C. Determining priority signs and symptoms for use as clinical outcomes assessments in trials including patients with malignant gliomas: Panel 1 Report. Neuro Oncol 2016; 18 Suppl 2:ii1-ii12. [PMID: 26989127 DOI: 10.1093/neuonc/nov267] [Citation(s) in RCA: 22] [Impact Index Per Article: 2.4] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/14/2022] Open
Abstract
Patients with primary brain tumors such as malignant gliomas are highly symptomatic, often from the time of diagnosis. Signs and symptoms (signs/symptoms) can cause functional limitations that often worsen over the disease trajectory and may impact patient quality of life. It is recognized that standard measurements of tumor response do not adequately measure this impact or the impact that a therapy may have to mitigate these signs/symptoms and potentially have clinical benefit. Identifying a core set of signs/symptoms and functional limitations is important for understanding their clinical impact and is the first step to including clinical outcomes assessment in primary brain tumor clinical trials.
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Affiliation(s)
- Terri S Armstrong
- The University of Texas Health Science Center at Houston and MD Anderson Cancer Center, Houston, Texas (T.S.A.); Patient Advocate, Bryn Mawr, Pennsylvania (A.M.B.); The University of Texas MD Anderson Cancer Center, Houston, Texas (P.D.B.); VU University Medical Center, Amsterdam, Netherlands (M.K.); VU University Medical Center, Amsterdam, and Medical Center Haaglanden, The Hague, Netherlands (M.J.B.T.); Genentech, South San Francisco, California (C.T.-O.)
| | - Allison M Bishof
- The University of Texas Health Science Center at Houston and MD Anderson Cancer Center, Houston, Texas (T.S.A.); Patient Advocate, Bryn Mawr, Pennsylvania (A.M.B.); The University of Texas MD Anderson Cancer Center, Houston, Texas (P.D.B.); VU University Medical Center, Amsterdam, Netherlands (M.K.); VU University Medical Center, Amsterdam, and Medical Center Haaglanden, The Hague, Netherlands (M.J.B.T.); Genentech, South San Francisco, California (C.T.-O.)
| | - Paul D Brown
- The University of Texas Health Science Center at Houston and MD Anderson Cancer Center, Houston, Texas (T.S.A.); Patient Advocate, Bryn Mawr, Pennsylvania (A.M.B.); The University of Texas MD Anderson Cancer Center, Houston, Texas (P.D.B.); VU University Medical Center, Amsterdam, Netherlands (M.K.); VU University Medical Center, Amsterdam, and Medical Center Haaglanden, The Hague, Netherlands (M.J.B.T.); Genentech, South San Francisco, California (C.T.-O.)
| | - Martin Klein
- The University of Texas Health Science Center at Houston and MD Anderson Cancer Center, Houston, Texas (T.S.A.); Patient Advocate, Bryn Mawr, Pennsylvania (A.M.B.); The University of Texas MD Anderson Cancer Center, Houston, Texas (P.D.B.); VU University Medical Center, Amsterdam, Netherlands (M.K.); VU University Medical Center, Amsterdam, and Medical Center Haaglanden, The Hague, Netherlands (M.J.B.T.); Genentech, South San Francisco, California (C.T.-O.)
| | - Martin J B Taphoorn
- The University of Texas Health Science Center at Houston and MD Anderson Cancer Center, Houston, Texas (T.S.A.); Patient Advocate, Bryn Mawr, Pennsylvania (A.M.B.); The University of Texas MD Anderson Cancer Center, Houston, Texas (P.D.B.); VU University Medical Center, Amsterdam, Netherlands (M.K.); VU University Medical Center, Amsterdam, and Medical Center Haaglanden, The Hague, Netherlands (M.J.B.T.); Genentech, South San Francisco, California (C.T.-O.)
| | - Christina Theodore-Oklota
- The University of Texas Health Science Center at Houston and MD Anderson Cancer Center, Houston, Texas (T.S.A.); Patient Advocate, Bryn Mawr, Pennsylvania (A.M.B.); The University of Texas MD Anderson Cancer Center, Houston, Texas (P.D.B.); VU University Medical Center, Amsterdam, Netherlands (M.K.); VU University Medical Center, Amsterdam, and Medical Center Haaglanden, The Hague, Netherlands (M.J.B.T.); Genentech, South San Francisco, California (C.T.-O.)
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31
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Moestrup L, Hvidt NC. Where is God in my dying? A qualitative investigation of faith reflections among hospice patients in a secularized society. DEATH STUDIES 2016; 40:618-629. [PMID: 27560705 DOI: 10.1080/07481187.2016.1200160] [Citation(s) in RCA: 10] [Impact Index Per Article: 1.1] [Reference Citation Analysis] [Abstract] [MESH Headings] [Track Full Text] [Subscribe] [Scholar Register] [Indexed: 06/06/2023]
Abstract
Despite increased focus on the role of spiritual care in palliative care, there is limited knowledge about spirituality/religiosity among dying patients in secularized cultures such as Denmark. This study aims through semi-structured interviews with Danish hospice patients and participant observation to elucidate how hospice patients reflect and act upon their potential faith. The results demonstrate three dimensions of faith: (1) "Knowing" (cognition), (2) "doing" (praxis) and (3) "being" (meaning). The article concludes that most patients had a hesitant, but according to their situation, important faith although it was not something they knew much about, let alone discussed or practiced much.
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Affiliation(s)
- Lene Moestrup
- a Research Unit of General Practice, Faculty of Health Sciences , University of Southern Denmark , Odense C , Denmark
- b Health Science Research Center , University College Lillebaelt , Odense SØ , Denmark
| | - Niels Christian Hvidt
- a Research Unit of General Practice, Faculty of Health Sciences , University of Southern Denmark , Odense C , Denmark
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32
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Braun-Lewensohn O. Sense of Coherence, Values, Youth Involvement, Civic Efficacy and Hope: Adolescents During Social Protest. SOCIAL INDICATORS RESEARCH 2016; 128:661-673. [DOI: 10.1007/s11205-015-1049-8] [Citation(s) in RCA: 3] [Impact Index Per Article: 0.3] [Reference Citation Analysis] [Track Full Text] [Subscribe] [Scholar Register] [Indexed: 02/08/2023]
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33
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Applebaum AJ, Kryza-Lacombe M, Buthorn J, DeRosa A, Corner G, Diamond EL. Existential distress among caregivers of patients with brain tumors: a review of the literature. Neurooncol Pract 2015; 3:232-244. [PMID: 31385976 DOI: 10.1093/nop/npv060] [Citation(s) in RCA: 47] [Impact Index Per Article: 4.7] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 08/27/2015] [Indexed: 11/14/2022] Open
Abstract
Background Attention to existential needs is a component of comprehensive oncologic care, and understanding these needs among informal caregivers of patients with brain tumors is necessary to provide them with comprehensive psychosocial care. The purpose of this systematic review was to synthesize the literature on existential distress experienced by these informal caregivers to inform the development of psychotherapeutic interventions for this population. Methods A systematic review was conducted using electronic medical databases. Studies that examined any element of existential distress among informal caregivers of patients with brain tumors were included. A final sample of 35 articles was reviewed. Results Six existential themes emerged: identity; isolation; responsibility and guilt; death anxiety; deriving meaning and personal growth; and spirituality and religion. The unique existential experience of parenting a patient with a brain tumor also emerged. Existential distress in all areas was identified as experienced early in the cancer trajectory and as a critical, unmet need. Conclusions Existential distress is well documented among informal caregivers of patients with brain tumors and is a significant driving force of burden. Awareness and acknowledgement of this distress, as well as interventions to ameliorate this suffering, are needed. More candid communication between health care providers and caregivers about brain tumor prognosis and caregivers' existential distress may improve their psychosocial outcomes.
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Affiliation(s)
- Allison J Applebaum
- Department of Psychiatry and Behavioral Sciences, Memorial Sloan Kettering Cancer Center, New York, New York (A.J.A.); Department of Neurology, Memorial Sloan Kettering Cancer Center, New York, New York (M.K.L., J.B., E.L.D.); Medical Library, Memorial Sloan Kettering Cancer Center, New York, New York (A.D.); Department of Psychology, University of Southern California, Los Angeles, California (G.C.)
| | - Maria Kryza-Lacombe
- Department of Psychiatry and Behavioral Sciences, Memorial Sloan Kettering Cancer Center, New York, New York (A.J.A.); Department of Neurology, Memorial Sloan Kettering Cancer Center, New York, New York (M.K.L., J.B., E.L.D.); Medical Library, Memorial Sloan Kettering Cancer Center, New York, New York (A.D.); Department of Psychology, University of Southern California, Los Angeles, California (G.C.)
| | - Justin Buthorn
- Department of Psychiatry and Behavioral Sciences, Memorial Sloan Kettering Cancer Center, New York, New York (A.J.A.); Department of Neurology, Memorial Sloan Kettering Cancer Center, New York, New York (M.K.L., J.B., E.L.D.); Medical Library, Memorial Sloan Kettering Cancer Center, New York, New York (A.D.); Department of Psychology, University of Southern California, Los Angeles, California (G.C.)
| | - Antonio DeRosa
- Department of Psychiatry and Behavioral Sciences, Memorial Sloan Kettering Cancer Center, New York, New York (A.J.A.); Department of Neurology, Memorial Sloan Kettering Cancer Center, New York, New York (M.K.L., J.B., E.L.D.); Medical Library, Memorial Sloan Kettering Cancer Center, New York, New York (A.D.); Department of Psychology, University of Southern California, Los Angeles, California (G.C.)
| | - Geoff Corner
- Department of Psychiatry and Behavioral Sciences, Memorial Sloan Kettering Cancer Center, New York, New York (A.J.A.); Department of Neurology, Memorial Sloan Kettering Cancer Center, New York, New York (M.K.L., J.B., E.L.D.); Medical Library, Memorial Sloan Kettering Cancer Center, New York, New York (A.D.); Department of Psychology, University of Southern California, Los Angeles, California (G.C.)
| | - Eli L Diamond
- Department of Psychiatry and Behavioral Sciences, Memorial Sloan Kettering Cancer Center, New York, New York (A.J.A.); Department of Neurology, Memorial Sloan Kettering Cancer Center, New York, New York (M.K.L., J.B., E.L.D.); Medical Library, Memorial Sloan Kettering Cancer Center, New York, New York (A.D.); Department of Psychology, University of Southern California, Los Angeles, California (G.C.)
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Living with a high-grade glioma: A qualitative study of patients' experiences and care needs. Eur J Oncol Nurs 2015; 19:383-90. [DOI: 10.1016/j.ejon.2015.01.003] [Citation(s) in RCA: 44] [Impact Index Per Article: 4.4] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 11/14/2014] [Revised: 01/12/2015] [Accepted: 01/15/2015] [Indexed: 11/23/2022]
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35
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Jones K, Simpson GK, Briggs L, Dorsett P. Does spirituality facilitate adjustment and resilience among individuals and families after SCI? Disabil Rehabil 2015; 38:921-35. [DOI: 10.3109/09638288.2015.1066884] [Citation(s) in RCA: 32] [Impact Index Per Article: 3.2] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/13/2022]
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Ownsworth T, Nash K. Existential well-being and meaning making in the context of primary brain tumor: conceptualization and implications for intervention. Front Oncol 2015; 5:96. [PMID: 25964883 PMCID: PMC4410611 DOI: 10.3389/fonc.2015.00096] [Citation(s) in RCA: 17] [Impact Index Per Article: 1.7] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Journal Information] [Subscribe] [Scholar Register] [Received: 11/20/2014] [Accepted: 04/09/2015] [Indexed: 12/02/2022] Open
Abstract
When faced with a significant threat to life, people tend to reflect more intensely upon existential issues, such as the meaning and purpose of one's life. Brain tumor poses a serious threat to a person's life, functioning, and personhood. Although recognized as an important dimension of quality of life, existential well-being is not well understood and reflects an overlooked area of support for people with brain tumor. This perspective article reviews the historical underpinnings of the concept of existential well-being and integrates this discussion with theoretical perspectives and research on meaning making and psychological adjustment to primary brain tumor. We then provide an overview of psychosocial support interventions for people with brain tumor and describe the findings of a recently published psychotherapy trial targeting existential well-being. Overall, this article highlights the importance of assessing the existential support needs of people with primary brain tumor and their family members, and providing different avenues of support to facilitate the meaning-making process across the illness trajectory.
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Affiliation(s)
- Tamara Ownsworth
- Griffith Health Institute, School of Applied Psychology, Behavioural Basis of Health, Griffith University, Brisbane, QLD, Australia
| | - Kimberley Nash
- Griffith Health Institute, School of Applied Psychology, Behavioural Basis of Health, Griffith University, Brisbane, QLD, Australia
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Koffman J, Goddard C, Gao W, Jackson D, Shaw P, Burman R, Higginson IJ, Silber E. Exploring meanings of illness causation among those severely affected by multiple sclerosis: a comparative qualitative study of Black Caribbean and White British people. BMC Palliat Care 2015; 14:13. [PMID: 25927425 PMCID: PMC4475620 DOI: 10.1186/s12904-015-0017-z] [Citation(s) in RCA: 9] [Impact Index Per Article: 0.9] [Reference Citation Analysis] [Abstract] [Track Full Text] [Download PDF] [Journal Information] [Subscribe] [Scholar Register] [Received: 10/16/2014] [Accepted: 04/07/2015] [Indexed: 11/23/2022] Open
Abstract
Background Illness attributions, particularly for those living with life limiting illnesses, are associated with emotional adjustment or psychological distress. Few studies have examined attributions among people severely affected by multiple sclerosis (PwMS), and specifically among from diverse communities. This study aimed to explore and compare the presence and construction of meanings among Black Caribbean and White British PwMS. Methods Cross sectional qualitative interviews were conducted among Black Caribbean (BC) and White British (WB) PwMS with an EDSS of ≥6.0 (severe disease). Data were analysed using the framework approach. Results 15 BC and 15 WB PwMS were interviewed. Attributions were complex with most PwMS reporting multiple explanations. Uncertainty, represents the first theme surrounding the aetiology of MS where participants constantly rehearsed the “why me?” question in relation to their illness, a number expressing considerable frustration. The second theme, ‘logical and scientific’, was voiced more often by WB PwMS and accounts for a range of genetic/viral influences, stress, environmental and lifestyle factors. Third, the ‘supernatural’ illness attribution theme departs from a biomedical perspective and was reported often among BC PwMS. This theme included the sub-categories of tests of faith and divine punishment, a view although exclusive to BC participants but was sometimes in conflict with notions of modernity. Conclusion Our findings identify evidence of cross-cultural and intra-group diversity in relation to MS causation. A greater professional awareness of the processes used by PwMS from diverse communities to make sense of their situation will enable health care professionals to facilitate effective support for those in their care and channel relevant psychosocial resources to them. This requires heightened skills in communication and cultural competency.
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Affiliation(s)
- Jonathan Koffman
- King's College London, Cicely Saunders Institute, Department of Palliative Care, Policy & Rehabilitation, Bessemer Road, London, SE5 9PJ, UK.
| | - Cassie Goddard
- King's College London, Cicely Saunders Institute, Department of Palliative Care, Policy & Rehabilitation, Bessemer Road, London, SE5 9PJ, UK.
| | - Wei Gao
- King's College London, Cicely Saunders Institute, Department of Palliative Care, Policy & Rehabilitation, Bessemer Road, London, SE5 9PJ, UK.
| | - Diana Jackson
- King's College London, Cicely Saunders Institute, Department of Palliative Care, Policy & Rehabilitation, Bessemer Road, London, SE5 9PJ, UK.
| | - Pauline Shaw
- Department of Neurology, King's College Hospital NHS Foundation Trust, SE5 9RS, London, UK.
| | - Rachel Burman
- King's College London, Cicely Saunders Institute, Department of Palliative Care, Policy & Rehabilitation, Bessemer Road, London, SE5 9PJ, UK.
| | - Irene J Higginson
- King's College London, Cicely Saunders Institute, Department of Palliative Care, Policy & Rehabilitation, Bessemer Road, London, SE5 9PJ, UK.
| | - Eli Silber
- Department of Neurology, King's College Hospital NHS Foundation Trust, SE5 9RS, London, UK.
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Simpson GK, Koh ES, Whiting D, Wright KM, Simpson T, Firth R, Gillett L, Younan K. Frequency, clinical correlates, and ratings of behavioral changes in primary brain tumor patients: a preliminary investigation. Front Oncol 2015; 5:78. [PMID: 25883906 PMCID: PMC4381693 DOI: 10.3389/fonc.2015.00078] [Citation(s) in RCA: 10] [Impact Index Per Article: 1.0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Journal Information] [Subscribe] [Scholar Register] [Received: 12/01/2014] [Accepted: 03/15/2015] [Indexed: 12/14/2022] Open
Abstract
Purpose Few studies have addressed the specific behavioral changes associated with primary brain tumor (PBT). This paper will report on the frequency and demographic/clinical correlates of such behaviors, and the reliability of rating such behaviors among people with PBT, family informants, and clinicians. The association of behavioral changes and patient functional status will also be discussed. Methods A total of 57 patients with 37 family informants were recruited from two large Australian metropolitan hospitals. Each completed three neuro-behavioral self-report measures; the Emotional and Social Dysfunction Questionnaire, the Frontal Systems Behavior Scale, and the Overt Behavior Scale. Patients also completed a depression symptom measure. Functional status was defined by clinician-rated Karnofsky performance status. Results Patients were on average 52 years old, a median of 4 months (range 1–82) post-diagnosis, with high grade (39%), low grade (22%), or benign tumors (39%). Patients reported frequency rates of 7–40% across various behavioral domains including anger, inappropriate behavior, apathy, inertia, and executive impairment. The presence of epileptic seizures was associated with significantly higher levels of behavioral changes. Notably, behavior did not correlate with tumor grade or treatment modality. There was moderate agreement between patients and relatives on the presence or absence of behavioral changes, and substantial agreement between relative and clinician ratings. Depressed patients did not generally report more changes than non-depressed patients. Increases in the relative and clinician-rated behavior scores were significantly correlated with decreasing functional status in the patient. Conclusion Behavioral changes were a common sequela of both benign and malignant PBT. Larger scale studies are required to confirm these results. The results suggest the importance of including behavior in brain cancer psychosocial assessments and the need to develop interventions to treat these patients and reduce the burden of care on families.
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Affiliation(s)
- Grahame K Simpson
- Brain Injury Rehabilitation Research Group, Ingham Institute of Applied Medical Research , Sydney, NSW , Australia ; Liverpool Brain Injury Rehabilitation Unit, Liverpool Hospital , Sydney, NSW , Australia
| | - Eng-Siew Koh
- New South Wales Oncology Group, Neuro-Oncology, Cancer Institute New South Wales , Sydney, NSW , Australia ; Collaboration for Cancer Outcomes Research and Evaluation (CCORE), Liverpool Hospital, University of New South Wales , Sydney, NSW , Australia ; Liverpool Cancer Therapy Centre, Liverpool Hospital , Sydney, NSW , Australia
| | - Diane Whiting
- Liverpool Brain Injury Rehabilitation Unit, Liverpool Hospital , Sydney, NSW , Australia
| | - Kylie M Wright
- New South Wales Oncology Group, Neuro-Oncology, Cancer Institute New South Wales , Sydney, NSW , Australia ; Department of Neurosurgery, Liverpool Hospital , Sydney, NSW , Australia
| | - Teresa Simpson
- New South Wales Oncology Group, Neuro-Oncology, Cancer Institute New South Wales , Sydney, NSW , Australia ; Liverpool Cancer Therapy Centre, Liverpool Hospital , Sydney, NSW , Australia
| | - Rochelle Firth
- Department of Neurosurgery, Royal North Shore Hospital , Sydney, NSW , Australia
| | - Lauren Gillett
- Brain Injury Rehabilitation Research Group, Ingham Institute of Applied Medical Research , Sydney, NSW , Australia
| | - Kathryn Younan
- Liverpool Brain Injury Rehabilitation Unit, Liverpool Hospital , Sydney, NSW , Australia
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Cognitive strategies and quality of life of patients with high-grade glioma. Support Care Cancer 2015; 23:3427-35. [PMID: 25761757 DOI: 10.1007/s00520-015-2691-z] [Citation(s) in RCA: 14] [Impact Index Per Article: 1.4] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 06/24/2014] [Accepted: 03/02/2015] [Indexed: 12/13/2022]
Abstract
The purpose of this study was to analyze the psychological well-being, quality of life, and cognitive strategies activated by patients with high-grade glioma. We hypothesized that the self-perceived quality of life is modulated by physical and psychological factors and that in order to understand this modulation more psychometric approaches are necessary. Data were collected from a sample of 73 consecutive patients with a histological diagnosis of primary malignant brain cancer (grade IV glioblastoma and grade III anaplastic astrocytoma) hospitalized in a specialized Italian center. The Functional Assessment of Cancer Therapy (FACT) scale and the Schedule of Evaluation of Individual Quality of Life-Direct Weighting (SEIQoL-DW) scale were used to assess quality of life. The mean FACT-Brain (Br) score was 122.37. Similarly, the median SEIQoL-DW score was 72.9 out of a maximum value of 100. No gender effect was found in relation to overall quality of life. Patients with high depression and/or anxiety scores reported lower quality of life (QoL) scores in all the instruments considered. We did not find any gender effect concerning depression and anxiety levels. However, we found that men and women, though having similar physical and functional well-being, reported different QoL determinants, since men seem to rely more on physical adjustment, while women activate more introspective strategies. Positive actions, family issues, negative thoughts, health, and positive thoughts were found to be the most reported themes. In conclusion, the present study strongly suggests that a positive psychological adjustment is possible also in the event of a severe diagnosis and during aggressive treatments, but QoL determinants might be considered too in order to help health professionals to understand patients' experience and to meet their needs.
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Best M, Aldridge L, Butow P, Olver I, Webster F. Conceptual analysis of suffering in cancer: a systematic review. Psychooncology 2015; 24:977-86. [PMID: 25754062 DOI: 10.1002/pon.3795] [Citation(s) in RCA: 53] [Impact Index Per Article: 5.3] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 08/06/2014] [Revised: 02/11/2015] [Accepted: 02/11/2015] [Indexed: 11/06/2022]
Abstract
OBJECTIVE Patient suffering is a neglected area of care, partly because of poor definitions. The aim of this study was to distill what is currently known about suffering in the health literature in order to generate a conceptual basis for further research. METHODS A systematic review focusing on suffering across all cancers was undertaken. The search included peer-reviewed English articles published between 1992 and 2012 in MEDLINE, Embase, PsycINFO and the Cochrane Library databases focusing on conceptualisation of suffering in adult cancer patients. Seminal theoretical articles conceptualising suffering more generally were also eligible. To ensure identification of a sufficiently broad range of conceptualisations of suffering in cancer, the search strategy was drafted iteratively. Study findings were subjected to conceptual analysis using the evolutionary method. RESULTS One hundred twenty-eight studies were identified, which discussed definitions or conceptualisations of suffering. In terms of its attributes, suffering is defined as 'an all-encompassing, dynamic, individual phenomenon characterized by the experience of alienation, helplessness, hopelessness and meaninglessness in the sufferer which is difficult for them to articulate. It is multi-dimensional and usually incorporates an undesirable, negative quality.' Surrogate terms, antecedents and consequences of suffering are described. CONCLUSIONS The systematic review revealed that suffering includes holistic suffering, which is multidimensional, oscillating, individual and difficult for individuals to express. Opportunities should be provided for patients to express their suffering. The potential for suffering to be transcended needs to be recognized and facilitated by healthcare staff.
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Affiliation(s)
- Megan Best
- Psycho-Oncology Co-operative Research Group, University of Sydney, Level 6 North, Lifehouse C39Z, New South Wales, 2006, Australia
| | - Lynley Aldridge
- Psycho-Oncology Co-operative Research Group, University of Sydney, Level 6 North, Lifehouse C39Z, New South Wales, 2006, Australia
| | - Phyllis Butow
- Psycho-Oncology Co-operative Research Group, University of Sydney, Level 6 North, Lifehouse C39Z, New South Wales, 2006, Australia
| | - Ian Olver
- Cancer Council Australia, GPO Box 4708, Sydney, New South Wales, 2001, Australia
| | - Fleur Webster
- Cancer Australia, Locked Bag 3, Strawberry Hills, New South Wales, 2012, Australia
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41
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Amaresha AC, Reddy NK, Ahmed A, Ross D, Arthur JAJ. Women Caregivers of Persons with Brain Tumour: A Psychosocial Needs Assessment in a Tertiary Care Hospital in Bangalore. INDIAN JOURNAL OF GENDER STUDIES 2015. [DOI: 10.1177/0971521514556944] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.1] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 12/13/2022]
Abstract
The diagnosis of a brain tumour poses severe challenges to patients as well as their caregivers. As caregivers, women play an important role. However, most of the literature on brain tumours has failed to emphasise the invaluable services of women caregivers, and their psychosocial needs have been overlooked. The current study aims to highlight this neglected aspect. Thirty women caregivers were selected through purposive sampling and their needs were assessed using a semi-structured questionnaire under five heads such as, professional service needs, informational needs, psychological/emotional needs, personal and spiritual needs and social support needs. It was found that some of their needs were unmet, especially their psychological/emotional and informational needs. Thus, gender-specific interventions are recommended across neuro-oncological settings.
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Affiliation(s)
- Anekal C. Amaresha
- Department of Psychiatric Social Work, National Institute of Mental Health and Neurosciences (NIMHANS), Bangalore, Karnataka, India
| | - N. Krishna Reddy
- Department of Psychiatric Social Work, National Institute of Mental Health and Neurosciences (NIMHANS), Bangalore, Karnataka, India
| | - Atiq Ahmed
- Department of Social Work, Central University of Rajasthan, Ajmer, Rajasthan, India
| | - Diana Ross
- The Richmond Fellowship Post Graduate College for Psycho-Social Rehabilitation, Bangalore, Karnataka, India
| | - Julian A. J. Arthur
- Department of Psychiatric Social Work, National Institute of Mental Health and Neurosciences (NIMHANS), Bangalore, Karnataka, India
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Langbecker D, Janda M. Systematic review of interventions to improve the provision of information for adults with primary brain tumors and their caregivers. Front Oncol 2015; 5:1. [PMID: 25667919 PMCID: PMC4304357 DOI: 10.3389/fonc.2015.00001] [Citation(s) in RCA: 14] [Impact Index Per Article: 1.4] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 11/26/2014] [Accepted: 01/07/2015] [Indexed: 01/24/2023] Open
Abstract
Background: Adults with primary brain tumors and their caregivers have significant information needs. This review assessed the effect of interventions to improve information provision for adult primary brain tumor patients and/or their caregivers. Methods: We included randomized or non-randomized trials testing educational interventions that had outcomes of information provision, knowledge, understanding, recall, or satisfaction with the intervention, for adults diagnosed with primary brain tumors and/or their family or caregivers. PubMed, MEDLINE, EMBASE, and Cochrane Reviews databases were searched for studies published between 1980 and June 2014. Results: Two randomized controlled, 1 non-randomized controlled, and 10 single group pre–post trials enrolled more than 411 participants. Five group, four practice/process change, and four individual interventions assessed satisfaction (12 studies), knowledge (4 studies), and information provision (2 studies). Nine studies reported high rates of satisfaction. Three studies showed statistically significant improvements over time in knowledge and two showed greater information was provided to intervention than control group participants, although statistical testing was not performed. Discussion: The trials assessed intermediate outcomes such as satisfaction, and only 4/13 reported on knowledge improvements. Few trials had a randomized controlled design and risk of bias was either evident or could not be assessed in most domains.
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Affiliation(s)
- Danette Langbecker
- School of Nursing, Institute of Health and Biomedical Innovation, Queensland University of Technology , Brisbane, QLD , Australia
| | - Monika Janda
- School of Public Health and Social Work, Institute of Health and Biomedical Innovation, Queensland University of Technology , Brisbane, QLD , Australia
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Ownsworth T, Chambers S, Damborg E, Casey L, Walker DG, Shum DHK. Evaluation of the making sense of brain tumor program: a randomized controlled trial of a home-based psychosocial intervention. Psychooncology 2014; 24:540-7. [DOI: 10.1002/pon.3687] [Citation(s) in RCA: 53] [Impact Index Per Article: 4.8] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 03/13/2014] [Revised: 08/26/2014] [Accepted: 08/29/2014] [Indexed: 11/09/2022]
Affiliation(s)
- Tamara Ownsworth
- School of Applied Psychology and Griffith Health Institute; Griffith University; Brisbane Australia
| | - Suzanne Chambers
- School of Applied Psychology and Griffith Health Institute; Griffith University; Brisbane Australia
- Cancer Council Queensland; Australia
- Health and Wellness Institute; Edith Cowan University; Australia
- Centre for Clinical Research; University of Queensland; Australia
| | - Ea Damborg
- School of Applied Psychology and Griffith Health Institute; Griffith University; Brisbane Australia
| | - Leanne Casey
- School of Applied Psychology and Griffith Health Institute; Griffith University; Brisbane Australia
| | - David G. Walker
- Newro Foundation and Briz Brain and Spine; Brisbane Australia
| | - David H. K. Shum
- School of Applied Psychology and Griffith Health Institute; Griffith University; Brisbane Australia
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Audulv Å, Packer T, Versnel J. Identifying gaps in knowledge: A map of the qualitative literature concerning life with a neurological condition. Chronic Illn 2014; 10:192-243. [PMID: 25085905 DOI: 10.1177/1742395313516133] [Citation(s) in RCA: 14] [Impact Index Per Article: 1.3] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 11/16/2022]
Abstract
OBJECTIVES To describe patterns in the qualitative literature regarding the everyday experience of living with a neurological condition; to identify areas of depth as well as gaps in the existing knowledge base. METHODS An extensive search of the literature yielded 474 articles meeting the inclusion criteria. Data extraction, based on scrutiny of both abstract and full text article included country of origin, diagnosis, stated aim, methodological framework/design, participants, and data collection method(s). Studies were categorized into 27 topics within four broad foci. RESULTS Four broad foci describe the field: impact and management, daily activities and occupations, impact on family, and the healthcare experience. Overall the research is unevenly distributed by diagnosis; some are well represented while others are the subject of little research. Even diagnoses well represented in quantity can be limited in breadth. DISCUSSION Possible explanations for the patterns of emphasis include: a focus on issues and problems, highlighted points of contact between patients and healthcare providers, and ability of participants to voice their views. The literature is also characterized by limited across diagnoses research or that comparing the experience of people with different diagnoses. There is a need for more research in particular diagnoses; more varied data collection methods and acknowledgement of ethnicity, gender, discrimination, and social inequalities.
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Affiliation(s)
- Åsa Audulv
- Department of Nursing, Mid Sweden University, Sundsvall, Sweden School of Occupational Therapy, Dalhousie University, Halifax, Canada
| | - Tanya Packer
- School of Occupational Therapy, Dalhousie University, Halifax, Canada
| | - Joan Versnel
- School of Occupational Therapy, Dalhousie University, Halifax, Canada
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Hajdarevic S, Rasmussen BH, Hörnsten Å. You never know when your last day will come and your trip will be over – Existential expressions from a melanoma diagnosis. Eur J Oncol Nurs 2014; 18:355-61. [DOI: 10.1016/j.ejon.2014.03.015] [Citation(s) in RCA: 12] [Impact Index Per Article: 1.1] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 01/04/2014] [Revised: 03/20/2014] [Accepted: 03/26/2014] [Indexed: 11/16/2022]
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Engeli L, Moergeli H, Binder M, Drabe N, Meier C, Buechi S, Dummer R, Jenewein J. Resilience in patients and spouses faced with malignant melanoma. A qualitative longitudinal study. Eur J Cancer Care (Engl) 2014; 25:122-31. [PMID: 25070508 DOI: 10.1111/ecc.12220] [Citation(s) in RCA: 15] [Impact Index Per Article: 1.4] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Accepted: 06/15/2014] [Indexed: 11/28/2022]
Abstract
Life-threatening diseases like malignant tumours are associated with considerable existential distress. Little is known about the factors that promote resilience within these individuals. This longitudinal qualitative partner study aimed to analyse resilience as per Antonovsky's sense of coherence. Eight patients with malignant melanoma and their partners were interviewed. They were asked about their coping strategies, attitudes towards the meaning of life and their cancer, and comprehension of what is happening to them. The questions were asked shortly after their diagnosis was made and 6 months later. All interviews were audio-taped and later transcribed and analysed according to the method of qualitative content analysis described by P. Mayring. At baseline, the majority of statements made (261; patients = 141/spouses = 120) related to coping/manageability of disease, with only 26 statements (patients = 15/spouses = 11) related to meaning and 127 (patients = 64/spouses = 63) to comprehension. There were no significant differences between the responses of patients and their partners and no significant changes in the number of statements during the 6-month interview. The most significant theme that emerged was manageability of disease, with distraction the most commonly utilised coping skill. The comprehension and meaning themes were far less prevalent. Hence, support should focus on disease and situational manageability.
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Affiliation(s)
- L Engeli
- Psychiatric Hospital of the University of Basel, Basel, Switzerland
| | - H Moergeli
- Department of Psychiatry and Psychotherapy, University Hospital Zurich, Zurich, Switzerland
| | - M Binder
- Department of Psychiatry and Psychotherapy, University Hospital Zurich, Zurich, Switzerland
| | - N Drabe
- Department of Psychiatry and Psychotherapy, University Hospital Zurich, Zurich, Switzerland
| | - C Meier
- Department of Psychiatry and Psychotherapy, University Hospital Zurich, Zurich, Switzerland
| | - S Buechi
- Private Clinic for Psychotherapy and Psychosomatics 'Hohenegg', Meilen, Switzerland
| | - R Dummer
- Department of Dermatology, University Hospital Zurich, Zurich, Switzerland
| | - J Jenewein
- Department of Psychiatry and Psychotherapy, University Hospital Zurich, Zurich, Switzerland
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Existential encounters: nurses' descriptions of critical incidents in end-of-life cancer care. Eur J Oncol Nurs 2014; 18:636-44. [PMID: 24996512 DOI: 10.1016/j.ejon.2014.06.001] [Citation(s) in RCA: 23] [Impact Index Per Article: 2.1] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 10/16/2013] [Revised: 05/12/2014] [Accepted: 06/03/2014] [Indexed: 10/25/2022]
Abstract
UNLABELLED Nurses working with cancer patients in end of life care need to be prepared to encounter patients' psychosocial and spiritual distress. AIM The aim of this study was to describe nurses' experiences of existential situations when caring for patients severely affected by cancer. METHODS AND SAMPLE Nurses (registered and enrolled) from three urban in-patient hospices, an oncology clinic and a surgery clinic and a palliative homecare team were, prior to the start of a training program, invited to write down their experiences of a critical incident (CI), in which existential issues were featured. RESULTS Eighty-eight CIs were written by 83 nurses. The CIs were analyzed with qualitative content analysis. Two main themes were found: Encounters with existential pain experiences, which concerned facing death and facing losses; and Encountering experiences of hope, which concerned balancing honesty, and desire to live. CONCLUSIONS This study points out that health care professionals need to be aware of patients' feelings of abandonment in exposed situations such as patients' feelings of existential loneliness. That there are some patients that express a desire to die and this makes the nurses feel uncomfortable and difficult to confront these occurrences and its therefore important to listen to patients' stories, regardless of care organization, in order to gain access to patients' inner existential needs.
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Ownsworth T, Dwan T, Chambers S, Walker DG, Shum DHK. The moderating effect of estimated pre-morbid IQ on the relationship between neuropsychological status and subjective well-being after brain tumour. J Psychosom Res 2014; 76:257-60. [PMID: 24529047 DOI: 10.1016/j.jpsychores.2013.12.008] [Citation(s) in RCA: 9] [Impact Index Per Article: 0.8] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 10/16/2013] [Revised: 12/19/2013] [Accepted: 12/21/2013] [Indexed: 10/25/2022]
Abstract
OBJECTIVE People with brain tumour experience complex and distressing symptoms. Neuropsychological impairment is proposed to have a negative impact on subjective well-being; however, research is yet to examine the influence of estimated premorbid IQ on this relationship. This preliminary study investigated the moderating effect of estimated premorbid IQ on the relationship between global neuropsychological status (GNF) and depression and quality of life. METHODS 73 adults (51% male) aged 21-65 years with primary brain tumour (52% benign) were administered a test battery assessing estimated premorbid IQ, GNF, depression (Depression Anxiety Stress Scales) and quality of life (Functional Assessment of Cancer Therapy, FACT). RESULTS A series of two-way analysis of covariance (ANCOVA) controlling for education found a significant interaction between estimated premorbid IQ (low average to average vs high average) and GNF (low vs high) on levels of depression (p < .05) and FACT emotional well-being (p < .05). For these outcomes, individuals with high average estimated premorbid IQ and low GNF reported better well-being than those with low-average to average estimated premorbid IQ and low GNF. Higher GNF was related to greater functional well-being (p < .01) irrespective of estimated premorbid IQ. CONCLUSION The finding that higher premorbid cognitive ability buffers the effect of neuropsychological impairment on emotional well-being after brain tumour advances understanding of the role of cognitive reserve in adjustment to neurological disorders.
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Affiliation(s)
- Tamara Ownsworth
- School of Applied Psychology and Griffith Health Institute, Griffith University, Brisbane, Australia.
| | - Toni Dwan
- School of Applied Psychology and Griffith Health Institute, Griffith University, Brisbane, Australia
| | - Suzanne Chambers
- School of Applied Psychology and Griffith Health Institute, Griffith University, Brisbane, Australia; Cancer Council Queensland, Australia; Health and Wellness Institute, Edith Cowan University, Australia; Centre for Clinical Research, University of Queensland, Australia
| | - David G Walker
- Newro Foundation and Briz Brain & Spine, Brisbane, Australia
| | - David H K Shum
- School of Applied Psychology and Griffith Health Institute, Griffith University, Brisbane, Australia
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Adejoh SO, Temilola OM, Olayiwola B. Living with cancer: a qualitative report of the experiences of leukaemia patients in Lagos, Nigeria. JOURNAL OF CANCER EDUCATION : THE OFFICIAL JOURNAL OF THE AMERICAN ASSOCIATION FOR CANCER EDUCATION 2013; 28:762-769. [PMID: 23925785 DOI: 10.1007/s13187-013-0524-7] [Citation(s) in RCA: 4] [Impact Index Per Article: 0.3] [Reference Citation Analysis] [Abstract] [MESH Headings] [Track Full Text] [Subscribe] [Scholar Register] [Indexed: 06/02/2023]
Abstract
The study examined the qualitative, cognitive and psychosocial experiences of those living with leukaemia undergoing treatment at a teaching hospital. Twenty respondents who consented to participate were purposively selected from the cancer patients with leukaemia receiving treatment in the said teaching hospital. The in-depth interview method was used to collect data. The data was analysed using manual content analysis. Data showed that patients lack basic knowledge about leukaemia and had no beliefs regarding leukaemia. Some patients believed in God and a medical breakthrough for a cure, while for some, the hope of living was not certain. The ill-health condition had brought about financial predicament to both patients and family members and has limited their productivity in terms of income-generating activities. Good interpersonal relationships and support from their care providers aided their compliance to treatment regime and provided hope for living positively with their condition. The study concludes that there is a need to educate the patients on the causes of their condition. Financial supports should be rendered to those living with leukaemia, while health care providers should be encouraged to continue to maintain good interpersonal relationships with their patients.
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Abstract
Workplace safety researchers and practitioners generally agree that it is necessary to understand the psychological factors that influence people's workplace safety behaviour. Yet, the search for reliable individual differences regarding psychological factors associated with workplace safety has lead to sparse results and inconclusive findings. The aim of this study was to investigate whether there are differences between the psychological factors, cognitive ability, personality and work-wellness of employees involved in workplace incidents and accidents and/or driver vehicle accidents and those who are not. The study population (N = 279) consisted of employees employed at an electricity supply organisation in South Africa. Mann-Whitney U-test and one-way ANOVA were conducted to determine the differences in the respective psychological factors between the groups. These results showed that cognitive ability did not seem to play a role in workplace incident/accident involvement, including driver vehicle accidents, while the wellness factors burnout and sense of coherence, as well as certain personality traits, namely conscientiousness, pragmatic and gregariousness play a statistically significant role in individuals' involvement in workplace incidents/accidents/driver vehicle accidents. Safety practitioners, managers and human resource specialists should take cognisance of the role of specifically work-wellness in workplace safety behaviour, as management can influence these negative states that are often caused by continuously stressful situations, and subsequently enhance work place safety.
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Affiliation(s)
- Martina Kotzé
- a UFS Business School , University of the Free State , Bloemfontein , South Africa
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