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1
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Lecciso F, Martis C, Del Prete CM, Martino P, Primiceri P, Levante A. Determinants of sibling relationships in the context of mental disorders. PLoS One 2025; 20:e0322359. [PMID: 40267927 PMCID: PMC12017835 DOI: 10.1371/journal.pone.0322359] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [MESH Headings] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 11/24/2023] [Accepted: 03/20/2025] [Indexed: 04/25/2025] Open
Abstract
Many studies have been conducted on sibling relationships to explore the well-being of siblings of persons with mental disorders. In this research project, two mediation models were tested. Model 1 examined whether a sibling's distress and the quality of the parent-typically developing sibling relationship would mediate the path between sibling-focused parentification and sibling relationships. Model 2 tested the same paths by comparing siblings of persons with mental disorders (n = 262) and siblings of typically developing persons (n = 303). From March to May 2021, 565 siblings of persons with and without mental disorders were asked to fill in an online survey. Aged 19 to 26 years, most of the siblings who participated in the study were older females. Cross-sectional results showed that the lower sibling-focused parentification was, the higher quality sibling relationships were, through the mediating role of lower distress and higher-quality parent-typically developing sibling relationships (Model 1). Siblings of persons with mental disorders reported low-quality sibling relationships (Model 2). Females and young siblings showed high distress. The findings of this study could become instrumental in promoting high-quality sibling relationships and best practices.
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Affiliation(s)
- Flavia Lecciso
- Department of Human and Social Sciences, University of Salento, Lecce, Italy
- Lab of Applied Psychology, Department of Human and Social Sciences, University of Salento, Lecce, Italy
| | - Chiara Martis
- Department of Human and Social Sciences, University of Salento, Lecce, Italy
| | | | - Paola Martino
- Office for Inclusion of Individuals with Disability, University of Salento, Lecce, Italy
| | - Patrizia Primiceri
- Department of Physical Medicine and Rehabilitation, Local Health Service, Lecce, Italy
| | - Annalisa Levante
- Department of Human and Social Sciences, University of Salento, Lecce, Italy
- Lab of Applied Psychology, Department of Human and Social Sciences, University of Salento, Lecce, Italy
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Tay J, Widger K, Steele R, Stremler R, Pole JD. Examining emotional and behavioural trajectories in siblings of children with life-limiting conditions. BMC Palliat Care 2024; 23:205. [PMID: 39129022 PMCID: PMC11318302 DOI: 10.1186/s12904-024-01535-y] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 03/21/2024] [Accepted: 07/30/2024] [Indexed: 08/13/2024] Open
Abstract
BACKGROUND Healthy siblings of children with life-limiting conditions often experience emotional and behavioural struggles over the course of the ill child's condition(s). Resources to support these siblings are limited due to a lack of understanding about their needs. Therefore, this study was designed to characterize the emotional and behavioural trajectories among siblings of children with progressive, life-limiting genetic, metabolic, or neurological conditions over a 12-month observation period. METHODS Seventy siblings were recruited from a large-survey based study (Charting the Territory) that examined the bio-psychosocial health outcomes of parents and siblings. Linear mixed effect models were used to assess the association between siblings' emotions and behaviour trajectories and selected demographic variables. Siblings' emotions and behaviour were measured with Child Behaviour Checklist (CBCL). RESULTS Siblings' mean age was 11.2 years at baseline and Internalizing, Externalizing, and Total Behaviour Problems mean scores were within normal ranges across time. However, 7-25% of siblings had scores within the clinical range. Brothers had higher levels of Internalizing Problems than sisters, whereas sisters had higher levels of Externalizing Problems than brothers. When treatment was first sought for the ill child less than a year prior to study participation, siblings had higher levels of Internalizing and Externalizing Problems compared with siblings who participated more than one year after treatment was sought. CONCLUSION Healthy siblings experience emotional and behavioural problems early in the child's disease trajectory. Although these problems improve with time, our findings show that brothers and sisters experience different types of challenges. Therefore, timely support for siblings is important as they navigate through the uncertainties and challenges.
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Affiliation(s)
- Joanne Tay
- Faculty of Nursing, University of Windsor, Room 317, Toldo Health Education Centre, 401 Sunset Avenue, Windsor, ON, N9B 3P4, Canada.
- Lawrence S. Bloomberg Faculty of Nursing, University of Toronto, Toronto, Canada.
| | - Kimberley Widger
- Lawrence S. Bloomberg Faculty of Nursing, University of Toronto, Toronto, Canada
- Paediatric Advanced Care Team, Hospital for Sick Children, Toronto, Canada
- Life Stage Program, ICES, Toronto, Canada
| | - Rose Steele
- School of Nursing, York University, Toronto, Canada
| | - Robyn Stremler
- Lawrence S. Bloomberg Faculty of Nursing, University of Toronto, Toronto, Canada
- Child Health Evaluative Sciences, Hospital for Sick Children, Toronto, Canada
| | - Jason D Pole
- Centre for Health Services Research, The University of Queensland, Brisbane, Australia
- Cancer Research Program, ICES, Toronto, Canada
- Dalla Lana School of Public Health, University of Toronto, Toronto, Canada
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3
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Pangarso AWS, Mulatsih S, Sitaresmi MN, Verhulst S, Kaspers G, Mostert S. Discovering needs for palliative care in children with cancer in Indonesia. Pediatr Blood Cancer 2024; 71:e30985. [PMID: 38627891 DOI: 10.1002/pbc.30985] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 12/05/2022] [Revised: 01/25/2024] [Accepted: 03/18/2024] [Indexed: 05/24/2024]
Abstract
BACKGROUND Although most children with cancer die in low- and middle-income countries, palliative care receives limited attention in these settings. This study explores parents' perspectives on experiences and needs of children dying from cancer. METHODS Home visits were conducted to interview parents of children, who were treated for cancer at an Indonesian academic hospital and died between 2019 and 2020, using semi-structured questionnaires. RESULTS Parents of 49 children (response rate 74%) were interviewed. While all children died in hospital, 37% of parents stated their child preferred to die at home. The most common symptoms during final illness were breathing difficulties (82%), pain (80%), and appetite loss (80%). Psychological symptoms received the least support from the medical team. No intervention was given to 46% of children with depression, 45% of children with anxiety, and 33% with sadness. Boys suffered more often from anxiety (68%) than girls (37%; p = .030). Parents (57%) were not always informed about their child's condition, and doctors gave confusing information (43%). The families' choice of treatment while dying was relieving pain or discomfort (39%) and extending life (33%), while for 29% it was unknown. However, many parents (51%) did not discuss these treatment wishes with doctors. Many children (45%) felt lonely wanting more interactions with school (71%), friends (63%), and family (57%). CONCLUSION Relieving suffering of children with cancer requires regular physical, psychological, social, and spiritual needs assessment. Families should actively participate in deciding whether to extend life or relieve pain and discomfort. This can importantly improve the quality of life of children and families.
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Affiliation(s)
- Alexandra Widita Swipratami Pangarso
- Department of Child Health, Dr. Sardjito General Hospital, Faculty of Medicine, Public Health and Nursing, Universitas Gadjah Mada, Yogyakarta, Indonesia
| | - Sri Mulatsih
- Department of Child Health, Dr. Sardjito General Hospital, Faculty of Medicine, Public Health and Nursing, Universitas Gadjah Mada, Yogyakarta, Indonesia
| | - Mei Neni Sitaresmi
- Department of Child Health, Dr. Sardjito General Hospital, Faculty of Medicine, Public Health and Nursing, Universitas Gadjah Mada, Yogyakarta, Indonesia
| | - Susanne Verhulst
- Pediatric Oncology, Emma Children's Hospital, Amsterdam UMC, Vrije Universiteit Amsterdam, Amsterdam, The Netherlands
| | - Gertjan Kaspers
- Pediatric Oncology, Emma Children's Hospital, Amsterdam UMC, Vrije Universiteit Amsterdam, Amsterdam, The Netherlands
- Princess Máxima Center for Pediatric Oncology, Utrecht, The Netherlands
| | - Saskia Mostert
- Pediatric Oncology, Emma Children's Hospital, Amsterdam UMC, Vrije Universiteit Amsterdam, Amsterdam, The Netherlands
- Princess Máxima Center for Pediatric Oncology, Utrecht, The Netherlands
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4
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Bezgin S, Özkaya Y, Akbaş Y, Elbasan B. An investigation of computer-game addiction, physical activity level, quality of life and sleep of children with a sibling with a chronic condition. Child Care Health Dev 2024; 50:e13228. [PMID: 38265131 DOI: 10.1111/cch.13228] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 06/02/2023] [Revised: 11/28/2023] [Accepted: 12/24/2023] [Indexed: 01/25/2024]
Abstract
BACKGROUND It is known that chronic condition also affects siblings without chronic illness. Healthy siblings of children with a chronic condition and aged 9-14 years and healthy children with a sibling without chronic illness and their parents were included in the study. AIM The aim of our study was to examine the internet-game addiction, physical activity, quality of life and sleep in children with a sibling with chronic condition and compare them with their peers with a healthy sibling. METHODS Computer game addiction, physical activity, sleep quality and quality of life were evaluated respectively by Computer Game Addiction Scale for Children, Child Physical Activity Questionnaire, Children's Sleep Disorder Scale and Children's Quality of Life Scale. RESULTS While the mean age of 75 children with chronically ill siblings was 10.65 ± 1.59 years, the mean age of 75 healthy children with healthy siblings was 10.46 ± 2.09 years. It was observed that children with a sibling with a chronic condition were more tend to computer-game addiction, had lower sleep quality, lower quality of life in terms of school functionality and psychosocial health compared to children with a healthy sibling (p < 0.05). CONCLUSIONS It was revealed that in families with children with a chronic condition, siblings with no health problems should also be evaluated in psychosocial terms and supported by appropriate approaches, such as to increase the level of physical activity.
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Affiliation(s)
- Sabiha Bezgin
- Department of Physiotherapy and Rehabilitation, Faculty of Health Sciences, Hatay Mustafa Kemal University, Antakya, Hatay, Turkey
| | - Yunus Özkaya
- Department of Physiotherapy and Rehabilitation, Faculty of Health Sciences, Hatay Mustafa Kemal University, Antakya, Hatay, Turkey
| | - Yılmaz Akbaş
- Faculty of Medicine, Department of Child Neurology, Hatay Mustafa Kemal University, Antakya, Hatay, Turkey
| | - Bülent Elbasan
- Department of Physiotherapy and Rehabilitation, Faculty of Health Sciences, Gazi University, Ankara, Turkey
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Rajendran P, Jarasiunaite-Fedosejeva G, İsbir GG, Shorey S. Healthy siblings' perspectives about paediatric palliative care: A qualitative systematic review and meta-synthesis. Palliat Med 2024; 38:25-41. [PMID: 38087809 DOI: 10.1177/02692163231217597] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 01/19/2024]
Abstract
BACKGROUND Siblings of children requiring palliative care are often forgotten and overlooked, as the focus tends to be on the ill child and their parents. Limited knowledge of non-bereaved siblings' perspectives makes it challenging to provide appropriate support for them. A review of existing literature is thus needed to better understand the experiences of these siblings and to identify research gaps that may require further examination. AIM To consolidate the available qualitative evidence on the perspectives of non-bereaved healthy siblings regarding paediatric palliative care. DESIGN A qualitative systematic review using a meta-synthesis approach was conducted. DATA SOURCES Six electronic databases (PubMed, CINAHL, PsycINFO, Embase, Scopus and ProQuest Dissertations and Theses Global) were searched from each database's inception date until October 2022. The search included qualitative and mixed-method studies that reported the perceptions and associations of siblings of patients receiving paediatric palliative care. Data were synthesised using thematic analysis. RESULTS Eleven studies were included. The overarching theme of the review would be 'A walking shadow: Living in the darkness shaped by the dying sibling', and three key themes and nine subthemes were identified from the included articles: (1) Changing family dynamics; (2) Impact on school and socialisation and (3) Psychological impact and coping. CONCLUSION Siblings demonstrated negative psychological impacts and were affected by changing family structure and relationships. However, socialisation with society, and varied coping skills such as cognitive coping and using distraction techniques, were significant for siblings to go through this journey and even led to some positive outcomes for them.
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Affiliation(s)
- Priyadharshni Rajendran
- Alice Lee Center for Nursing Studies, Yong Loo Lin School of Medicine, National University of Singapore, Singapore, Singapore
| | | | - Gözde Gökçe İsbir
- Midwifery Department, School of Health, Mersin University, Mersin, Turkey
| | - Shefaly Shorey
- Alice Lee Center for Nursing Studies, Yong Loo Lin School of Medicine, National University of Singapore, Singapore, Singapore
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Zappas MP, Devereaux A, Pesch MH. The Psychosocial Impact of Congenital Cytomegalovirus on Caregivers and Families: Lived Experiences and Review of the Literature. Int J Neonatal Screen 2023; 9:30. [PMID: 37367211 PMCID: PMC10299480 DOI: 10.3390/ijns9020030] [Citation(s) in RCA: 6] [Impact Index Per Article: 3.0] [Reference Citation Analysis] [Abstract] [Key Words] [Grants] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 03/29/2023] [Revised: 05/18/2023] [Accepted: 05/22/2023] [Indexed: 06/28/2023] Open
Abstract
Caring for a child with congenital cytomegalovirus (cCMV) can be costly for families, not only in terms of out-of-pocket expenses, but also in terms of caregiver time, relationships, career trajectories, and mental health. These additional burdens are sometimes referred to as "spillover effects". As parents of children with cCMV, we, the authors of this article, discuss the impact that cCMV has had on our families. While multiple studies have reported on the epidemiology, prevention, screening, diagnosis, and management of cCMV, there has been minimal research regarding the possible impact on the family unit. In this narrative review, we discuss the various areas of the lives of families and caregivers that may be impacted by raising a child with cCMV. Whether children are minimally or severely affected by the sequelae of cCMV, they and their families merit the progression of awareness of the virus and governmental policies to help end cCMV. As the existing cCMV-specific literature is limited, we correlate studies of other childhood disabilities and find the mutuality experienced by families affected by cCMV.
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Affiliation(s)
- Michelle P. Zappas
- Department of Nursing, Suzanne Dworak-Peck School of Social Work, University of Southern California, Los Angeles, CA 90015, USA
| | | | - Megan H. Pesch
- National CMV Foundation, Tampa, FL 33606, USA
- Division of Developmental and Behavioral Pediatrics, Department of Pediatrics, University of Michigan Medical School, Ann Arbor, MI 48109, USA
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The Social Networks and Social Support of Siblings of Children with Cancer. CHILDREN 2022; 9:children9010113. [PMID: 35053738 PMCID: PMC8774421 DOI: 10.3390/children9010113] [Citation(s) in RCA: 6] [Impact Index Per Article: 2.0] [Reference Citation Analysis] [Abstract] [Track Full Text] [Download PDF] [Figures] [Subscribe] [Scholar Register] [Received: 12/18/2021] [Revised: 01/06/2022] [Accepted: 01/13/2022] [Indexed: 11/17/2022]
Abstract
Siblings of children with cancer need support to ameliorate the challenges they encounter; however, little is known about what types and sources of support exist for siblings. This study addresses this gap in our understanding of the social networks and sources of support for adolescents with a brother or sister who has cancer. Additionally, we describe how the support siblings receive addresses what they feel are the hardest aspects of being a sibling of a child with cancer. During semi-structured interviews, siblings (ages 12–17) constructed ecomaps describing their support networks. Data were coded for support type (emotional, instrumental, informational, validation, companionship) and support provider (e.g., mother, teacher, friend). Network characteristics and patterns of support were explored. Support network size ranged from 3 to 10 individuals (M = 6 ± 1.9); siblings most frequently reported mothers as sources of support (n = 22, 91.7%), followed by fathers (n = 19, 79.2%), close friends (n = 19, 79.2%) and siblings (with or without cancer) (n = 17, 70.8%). Friends and brothers or sisters most often provided validation and companionship while instrumental and informational supports came from parents. This study provides foundational knowledge about siblings’ support networks, which can be utilized to design interventions that improve support for siblings of children with cancer.
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8
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Srivastava K, Agrawal E, Datar M, Rajadhyaksha S. Psychosocial and emotional consequences in siblings of children with epilepsy. J Pediatr Neurosci 2022. [DOI: 10.4103/jpn.jpn_140_21] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/04/2022] Open
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Justin P, Dorard G, Untas A. Comment accompagner les jeunes aidants confrontés au cancer d’un proche ? PSYCHO-ONCOLOGIE 2021. [DOI: 10.3166/pson-2021-0166] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/20/2022]
Abstract
La littérature montre que de nombreux enfants et adolescents confrontés au cancer d’un proche apportent une aide significative et régulière. Ces jeunes sont nommés jeunes aidants (JA). Cette situation a des conséquences importantes sur le bien-être et la qualité de vie de ces jeunes. Pourtant, les JA sont aujourd’hui peu identifiés et reconnus en France, et il existe peu de dispositifs pour les soutenir. Cet article se propose d’exposer la place des JA dans le cancer dans notre société, leurs besoins et les dispositifs d’accompagnement pouvant y répondre.
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10
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A study on the adaptation of the sibling cancer needs ınstrument to Turkish. CURRENT PSYCHOLOGY 2021. [DOI: 10.1007/s12144-021-02357-4] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 10/20/2022]
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11
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Wawrzynski SE, Schaefer MR, Schvaneveldt N, Alderfer MA. Social support and siblings of children with cancer: A scoping review. Psychooncology 2021; 30:1232-1245. [PMID: 33851490 PMCID: PMC8363579 DOI: 10.1002/pon.5689] [Citation(s) in RCA: 4] [Impact Index Per Article: 1.0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 01/09/2021] [Revised: 03/23/2021] [Accepted: 03/26/2021] [Indexed: 12/20/2022]
Abstract
OBJECTIVE Social support is essential in healthy adjustment to life stressors. This scoping review examines how social support has been conceptualized, operationalized, and studied among siblings of children with cancer. Gaps in the current literature are identified, and future research directions are proposed. METHODS A rigorous systematic scoping review framework guided our process. Medline, Embase, CINAHL, PsycINFO, and Scopus were searched for literature regarding social support and siblings of children with cancer. After screening, 57 articles were identified (n = 26 quantitative, n = 21 qualitative, and n = 10 multi-method) and their content extracted for summarization. RESULTS The majority of studies (n = 43, 75.4%) were descriptive; 14 (24.6%) included interventions, and of those, four were experimental. Few studies used a clearly defined theoretical framework, or validated tools to measure social support. Studies explored perceived social support needs of siblings, the provision and availability of formal support through interventions and related outcomes, and informal family social supports. A variety of support types were found to be helpful to siblings in different ways. CONCLUSIONS Social support is a prevalent topic in the literature regarding siblings of children with cancer. It is unclear what types of support are most important due to how it has been conceptualized and measured. Despite some methodological limitations, greater levels of social support have been linked to better adaptation among siblings of children with cancer. Future work is warranted to identify the most beneficial types of support for siblings based on their age, developmental stage, and the cancer trajectory.
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Affiliation(s)
- Sarah E Wawrzynski
- Intermountain Primary Children's Hospital, Pediatric Critical Care Services, College of Nursing, University of Utah, Salt Lake City, Utah, USA
| | - Megan R Schaefer
- Department of Psychology, St. Jude Children's Research Hospital, Memphis, Tennessee, USA
| | - Nena Schvaneveldt
- Eccles Health Science Library, University of Utah, Salt Lake City, Utah, USA
| | - Melissa A Alderfer
- Center for Healthcare Delivery Science, Nemours Children's Health System and Department of Pediatrics, Sidney Kimmel Medical College, Thomas Jefferson University, Philadelphia, Pennsylvania, USA
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12
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Matthews A, Peterson CM, Lenz K, Kramer RA, Mara C, Copps E, Mitan L. Modifiable factors associated with mental health symptoms in siblings of adolescents with anorexia nervosa. Eat Weight Disord 2021; 26:1757-1765. [PMID: 32880095 DOI: 10.1007/s40519-020-00993-6] [Citation(s) in RCA: 3] [Impact Index Per Article: 0.8] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 05/12/2020] [Accepted: 08/21/2020] [Indexed: 11/26/2022] Open
Abstract
PURPOSE Research demonstrates that anorexia nervosa (AN) takes a significant toll on affected families, yet the well-being of siblings has been largely overlooked. This study examines mental health symptoms in siblings of adolescents with AN and seeks to identify modifiable factors associated with well-being. METHOD Participants included 34 siblings (aged 11-19) of adolescents with AN and 47 age and sex matched controls. Participants and their caregivers completed assessments of anxiety, depression, internalizing and externalizing problems, and parentification. Siblings of adolescents with AN also completed the Sibling Perception Questionnaire, an assessment of perceptions and attitudes about AN. RESULTS Analyses indicated that siblings of adolescents with AN reported greater anxiety and parentification than controls. On caregiver reports of participants' internalizing and externalizing symptoms, no significant differences were found across groups. In siblings of adolescents with AN, females were more vulnerable to anxiety, depression, and negative attitudes and perceptions about AN than males. Perceived negative interpersonal interactions, specific to having a brother or sister with AN, were associated with greater anxiety and depression among AN siblings. CONCLUSION Findings from this pilot study suggest that siblings of adolescents with AN are vulnerable to anxiety and parentification behaviors. Negative interpersonal interactions specific to having a brother or sister with AN may perpetuate risk for poorer well-being. Caregivers may not be attuned to these struggles, highlighting the importance of provider and family education about sibling vulnerabilities. Therapeutic interventions that target siblings of adolescents with AN are also indicated. LEVEL OF EVIDENCE Level III, case-control analytic study.
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Affiliation(s)
- Abigail Matthews
- Department of Pediatrics, University of Cincinnati College of Medicine, Cincinnati, OH, USA.
- Division of Behavioral Medicine and Clinical Psychology, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, USA.
| | - Claire M Peterson
- Department of Pediatrics, University of Cincinnati College of Medicine, Cincinnati, OH, USA
- Division of Behavioral Medicine and Clinical Psychology, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, USA
| | - Katrina Lenz
- Department of Pediatrics, University of Cincinnati College of Medicine, Cincinnati, OH, USA
| | - Rachel A Kramer
- Department of Pediatrics, University of Cincinnati College of Medicine, Cincinnati, OH, USA
- Division of Behavioral Medicine and Clinical Psychology, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, USA
| | - Constance Mara
- Department of Pediatrics, University of Cincinnati College of Medicine, Cincinnati, OH, USA
- Division of Behavioral Medicine and Clinical Psychology, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, USA
| | - Emily Copps
- Department of Pediatrics, University of Cincinnati College of Medicine, Cincinnati, OH, USA
| | - Laurie Mitan
- Department of Pediatrics, University of Cincinnati College of Medicine, Cincinnati, OH, USA
- Division of Adolescent and Transition Medicine, Cincinnati Children's Hospital Medical Center, Cincinnati, OH, USA
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13
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Justin P, Lamore K, Dorard G, Untas A. Are there young carers in oncology? A systematic review. Psychooncology 2021; 30:1430-1441. [PMID: 33993613 PMCID: PMC9292599 DOI: 10.1002/pon.5708] [Citation(s) in RCA: 7] [Impact Index Per Article: 1.8] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Subscribe] [Scholar Register] [Received: 01/13/2021] [Revised: 04/12/2021] [Accepted: 04/17/2021] [Indexed: 11/09/2022]
Abstract
Objective This systematic review aims to investigate the support children provide in the case of a relative's cancer. Methods Searches were performed on four electronic databases (Embase, PsycINFO, PubMed and ScienceDirect) to identify studies that report on the support provided by children to a relative diagnosed with cancer. Two researchers independently evaluated the eligibility of the studies and cross‐checked them for accuracy. The Crowe Critical Appraisal Tool (CCAT) was used to assess the quality of the studies included. Results Out of the 10948 articles screened, 30 were included in this review. Results highlighted that cancer provokes changes in families, such as shifts in roles and increased responsibilities for the youth. Children often provided significant support to their sick relative and family members, including practical, emotional, and medical support such as household duties, medical assistance, companionship, and distraction. However, they were designated as young carers in only one study. The support provided was associated with negative effects such as stress and fatigue, and with positive effects such as increased empathy and independence. Children wished to support their family but also named several needs, such as time for themselves and the opportunity to enjoy their childhood. Conclusion The results of this systematic review highlight the importance of taking into account the support provided by young people facing the cancer of a relative and designating them as young carers. Much remains to be accomplished to officially recognize their role and to support them properly.
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Affiliation(s)
- Pauline Justin
- Laboratoire de Psychopathologie et Processus de Santé, Université de Paris, Boulogne-Billancourt, France
| | - Kristopher Lamore
- Laboratoire de Psychopathologie et Processus de Santé, Université de Paris, Boulogne-Billancourt, France
| | - Géraldine Dorard
- Laboratoire de Psychopathologie et Processus de Santé, Université de Paris, Boulogne-Billancourt, France
| | - Aurélie Untas
- Laboratoire de Psychopathologie et Processus de Santé, Université de Paris, Boulogne-Billancourt, France
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14
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Van Schoors M, Sels L, Goubert L, Verhofstadt LL. Siblings Dealing with Pediatric Cancer: A Family- and Context-oriented Approach. J Pediatr Oncol Nurs 2021; 38:166-175. [PMID: 33792425 DOI: 10.1177/1043454221992303] [Citation(s) in RCA: 3] [Impact Index Per Article: 0.8] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/15/2022] Open
Abstract
Background: Pediatric cancer is a severe life-threatening disease that poses significant challenges to the life of the siblings. Based on the social ecology model, the current study is aimed at exploring the association between intrafamilial (family functioning, family support) and contextual (network support) resources, and the individual adjustment of siblings facing cancer in their brother/sister. Methods: Participants were 81 siblings of children with leukemia or non-Hodgkin lymphoma. The mean siblings' age was 10.32 years. Siblings completed the Family Environment Scale, the Social Support Questionnaire for Children, the Situation-Specific Emotional Reactions Questionnaire, and the Pediatric Quality of Life Inventory. Data were analyzed using a multi-level approach. Results: Family functioning, family support, and network support proved to be related to siblings' cancer-related emotional reactions post-diagnosis. In addition, the present study suggests taking into account the gender of the ill child and the age of the siblings. Discussion: Our findings led to the conclusion that resources at both the intrafamilial level and the contextual level are important for explaining sibling adjustment post-diagnosis. Interventions targeting the sibling, the family, and the external network are warranted to enhance sibling adjustment.
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Affiliation(s)
- Marieke Van Schoors
- Department of Experimental Clinical and Health Psychology, Faculty of Psychology and Educational Sciences, 26656Ghent University, Ghent, Belgium
| | - Laura Sels
- Department of Experimental Clinical and Health Psychology, Faculty of Psychology and Educational Sciences, 26656Ghent University, Ghent, Belgium
| | - Liesbet Goubert
- Department of Experimental Clinical and Health Psychology, Faculty of Psychology and Educational Sciences, 26656Ghent University, Ghent, Belgium
| | - Lesley L Verhofstadt
- Department of Experimental Clinical and Health Psychology, Faculty of Psychology and Educational Sciences, 26656Ghent University, Ghent, Belgium
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Development of a Stress Scale for Siblings of Childhood Cancer Patients. CHILDREN-BASEL 2021; 8:children8040265. [PMID: 33808319 PMCID: PMC8067122 DOI: 10.3390/children8040265] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.3] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Subscribe] [Scholar Register] [Received: 02/24/2021] [Revised: 03/25/2021] [Accepted: 03/27/2021] [Indexed: 11/22/2022]
Abstract
Most siblings of childhood cancer patients (SCCP) report not only post-traumatic stress but also daily stresses due to changes in their daily lives. The purpose of this study was to develop a stress scale for SCCP and to examine the validity and reliability of the scale. Based on conceptual analysis, 40 preliminary items were selected. After its content validity was determined by six experts, 37 items were chosen. For the psychometric testing, 125 SCCPs, aged 11–16, were surveyed. Through item analysis and exploratory factor analysis for construct validity, 27 items explained 61.2% of the variance, and they were categorized into six factors. Criterion validity was confirmed by examining the overall correlation with standard instruments according to the age group. Reliability was evaluated using Cronbach’s alpha (0.91) and test-retest correlation (r = 0.597). This self-administered questionnaire with a 4-point Likert-type scale may be useful in clarifying and measuring stress levels in SCCPs.
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[Evaluation of a Manualized Group Program for Siblings of Children with Diseases or Disabilities]. Prax Kinderpsychol Kinderpsychiatr 2020; 69:203-217. [PMID: 32394821 DOI: 10.13109/prkk.2020.69.3.203] [Citation(s) in RCA: 2] [Impact Index Per Article: 0.4] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/27/2022]
Abstract
Evaluation of a Manualized Group Program for Siblings of Children with Diseases or Disabilities This study evaluates a manualized group program for siblings of children with life-threatening/life-limiting diseases or disabilities. The program aims to activate resources and to reduce emotional and behavioral problems, using cognitive-behavioral methods and experience-based interventions. In this multi-center study, 13 GeschwisterTREFFs were conducted by 11 study sites in Germany. Prior to and after the intervention 97 siblings aged 7 to 14 years and their parents were examined with standardized questionnaires. At baseline, the siblings of children with diseases or disabilities showed significant more emotional and behavioral problems compared to the respective norm samples. After the intervention, the siblings reported declined problem behavior scores that were mostly in the range of the particular norm values. Furthermore, the children indicated a significant improvement of self-esteem, self-efficacy, school competences and relations to their siblings. However, parents reported more problem behavior and less health-related quality of life of their children at both assessments. The present multi-center study showed the interventions' feasibility in different settings and confirmed expected improvements of target variables during the intervention period. Randomized-controlled trails are warranted to verify our results.
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Neuroticism and extraversion mediate the relationship between having a sibling with developmental disabilities and anxiety and depression symptoms. J Affect Disord 2019; 243:232-240. [PMID: 30248634 DOI: 10.1016/j.jad.2018.09.042] [Citation(s) in RCA: 10] [Impact Index Per Article: 1.7] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 02/15/2018] [Revised: 08/23/2018] [Accepted: 09/15/2018] [Indexed: 11/23/2022]
Abstract
Background Children growing up with a sibling with disabilities report higher levels of depression and anxiety symptoms as adults. Here, we examined whether personality characteristics also play a part in mediating this relationship. Method We tested for differences in personality traits between 132 individuals who have a sibling with developmental disabilities and 132 closely matched comparisons. Results Differences in Big Five factors of personality were demonstrated across the disability groups and between the disability groups and the comparisons, especially in Extraversion, Neuroticism and Openness. Individuals growing up alongside a sibling with developmental disabilities have a higher tendency to experience anxiety and depression symptoms, and this research is the first demonstration that personality traits mediate this relationship. Specifically, Neuroticism is a strong mediator of anxiety while both Neuroticism and Extraversion contribute mediating effects toward the development of depression. Limitations Our study made use of self-report methodology which, although having recognized limitations, is more reliable than parental reports. Given the cross-sectional nature of our design, we were not able to examine pre-existing developmental factors that may have influenced the participant's propensity to particular personality traits and affective disorders. However, we obtained a large sample and closely matched participants to examine differences between those with a sibling with disabilities and those without. Conclusions As such, differences in personality traits have important implications for the understanding and treatment of siblings presenting with anxiety and depression symptoms. We recommend that intervention should target those high in Neuroticism among individuals who have a sibling with disabilities, and that more social support is put in place for siblings to mitigate their tendency towards introversion and buffer them against psychological maladjustment.
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Porteous E, Peterson ER, Cartwright C. Siblings of Young People With Cancer in NZ: Experiences That Positively and Negatively Support Well-Being. J Pediatr Oncol Nurs 2018; 36:119-130. [PMID: 30556465 DOI: 10.1177/1043454218819455] [Citation(s) in RCA: 10] [Impact Index Per Article: 1.4] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/15/2022] Open
Abstract
Siblings of young people with cancer experience significant distress and these effects often exist long after their sibling's treatment has successfully been completed. In New Zealand, many families must travel several hours to receive treatment, with some having to live away from home for extended periods which can create additional strains. We interviewed 10 siblings of pediatric cancer survivors drawn from a larger quantitative study, to investigate what made siblings' experiences more difficult and to find out what was helpful in supporting their adjustment. The selected participants came from across New Zealand, represented a mix of gender and age, and had a range of depression scores. Our thematic analysis found that experiences that were associated with the most distress included concurrent stressors, and feeling left out, rejected, or isolated. Experiences that were most helpful to their well-being were feeling involved, knowing that they were still important and a priority for their parents, connecting with people through their experiences, and focusing on positive experiences. Our findings suggest that professionals working with these families could help siblings of a child with cancer by promoting hope, acknowledging positive growth, drawing attention to positive events to promote benefit finding, and providing opportunities to have fun. Increasing parental awareness of the impact of differential treatment and improving the public understanding of sibling issues might also be helpful.
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Howard Sharp KM, Russell C, Keim M, Barrera M, Gilmer MJ, Foster Akard T, Compas BE, Fairclough DL, Davies B, Hogan N, Young-Saleme T, Vannatta K, Gerhardt CA. Grief and growth in bereaved siblings: Interactions between different sources of social support. ACTA ACUST UNITED AC 2018; 33:363-371. [PMID: 30234359 DOI: 10.1037/spq0000253] [Citation(s) in RCA: 19] [Impact Index Per Article: 2.7] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/08/2022]
Abstract
The objective was to characterize the relation between different sources of school-based social support (friends, peers, and teachers) and bereaved siblings' grief and grief-related growth and to examine whether nonparental sources of social support buffer the effects of low parent support on bereaved siblings. Families (N = 85) were recruited from cancer registries at 3 pediatric institutions 3-12 months after a child's death. Bereaved siblings were 8-18 years old (M = 12.39, SD = 2.65) and majority female (58%) and White (74%). During home visits, siblings reported their perceptions of social support from parental and nonparental sources using the Social Support Scale for Children, as well as grief and grief-related growth using the Hogan Sibling Inventory of Bereavement. Parent, friend, and teacher support were positively correlated with grief-related growth, whereas parent and peer support were negatively correlated with grief for adolescents. Teacher and friend support significantly moderated the association between parent support and grief such that teacher and friend support accentuated the positive effects of parent support. Friend and peer support moderated associations between parent support and grief/growth for adolescents but not children. School-based social support, namely from friends, peers, and teachers, appears to facilitate the adjustment of bereaved siblings. Findings suggest that bereaved siblings may benefit from enhanced support from teachers and friends regardless of age, with middle/high school students particularly benefitting from increased support from close friends and peers. (PsycINFO Database Record
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Affiliation(s)
| | - Claire Russell
- Department of Psychiatry and Behavioral Health, Nationwide Children's Hospital
| | | | - Maru Barrera
- Department of Psychology, Hospital for Sick Children
| | | | | | - Bruce E Compas
- Department of Psychology and Human Development, Vanderbilt University
| | - Diane L Fairclough
- Department of Biostatistics and Informatics, Colorado School of Public Health
| | | | - Nancy Hogan
- Marcella Niehoff School of Nursing, Loyola University Chicago
| | - Tammi Young-Saleme
- Department of Psychiatry and Behavioral Health, Nationwide Children's Hospital
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Eche IJ, Aronowitz T. Factors That Influence Parental Uncertainty and Health-Related Quality of Life in Children With Cancer: A Framework. Nurs Sci Q 2018; 31:362-368. [PMID: 30223741 DOI: 10.1177/0894318418792896] [Citation(s) in RCA: 6] [Impact Index Per Article: 0.9] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/17/2022]
Abstract
The purpose of this paper is to present a conceptual-theoretical-empirical model addressing factors that influence the relation between parental uncertainty and health-related quality of life in children with cancer. The basic concepts identified and defined in the model include parental uncertainty, health-related quality of life, parental trait anxiety, parental depression, and perceived parental social support. The proposed relationships between the concepts are explained with explicit linkages to their empirical indicators. There is limited research in childhood cancer regarding the relation between parental uncertainty and health-related quality of life; therefore, the proposed model will help to better understand this relationship.
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Affiliation(s)
- Ijeoma Julie Eche
- 1 University of Massachusetts Boston, Department of Nursing, Staff Nurse Hematology, Oncology, and Clinical Research Program, Boston Children's Hospital, Boston, MA, USA
| | - Teri Aronowitz
- 2 Associate Professor, College of Nursing and Health Sciences, University of Massachusetts Boston, Boston, MA, USA
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Van Schoors M, De Mol J, Morren H, Verhofstadt LL, Goubert L, Van Parys H. Parents' Perspectives of Changes Within the Family Functioning After a Pediatric Cancer Diagnosis: A Multi Family Member Interview Analysis. QUALITATIVE HEALTH RESEARCH 2018; 28:1229-1241. [PMID: 29357749 DOI: 10.1177/1049732317753587] [Citation(s) in RCA: 28] [Impact Index Per Article: 4.0] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Subscribe] [Scholar Register] [Indexed: 06/07/2023]
Abstract
Pediatric cancer is a life-threatening disease that challenges the life of the diagnosed child, the parents, and possible siblings. Moreover, it also places considerable demands on family life. The aim of this study was to explore changes in the family functioning after a pediatric cancer diagnosis. Ten couples who had a child with leukemia or non-Hodgkin lymphoma were interviewed individually about their experiences. Interviews were semistructured, and the data were analyzed using Multi Family Member Interview Analysis. Three themes emerged from the data: (a) Family Cohesion: Strengthened Versus Fragmented; (b) Educational Norms and Values: Overindulgence Versus Being Stricter, and (c) Normality: Loss Versus Preservation. The conflicting dynamics present in these emerging themes exemplify the complexity of this process of family adaptation. This study illustrates the need to take into account the family level, as well as the conflicting feelings parents may experience after a pediatric cancer diagnosis.
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Affiliation(s)
| | - Jan De Mol
- 2 Université Catholic de Louvain, Louvain-la-Neuve, Belgium
| | | | | | | | - Hanna Van Parys
- 1 Ghent University, Ghent, Belgium
- 3 Ghent University Hospital, Ghent, Belgium
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22
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Jo MJ, Hong S, Park HR. Effects of Art Intervention Program for Siblings of Children With Cancer: A Pilot Study. J Pediatr Oncol Nurs 2018; 35:178-187. [DOI: 10.1177/1043454218762702] [Citation(s) in RCA: 8] [Impact Index Per Article: 1.1] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/17/2022] Open
Abstract
Siblings of children with cancer often experience negative feelings, and art intervention can help them express their feelings and overcome hardships. This study aimed to develop an Art Intervention Program to improve the psychological adaptation of siblings of children with cancer and to evaluate its effects. Participants were seventeen 7- to 10-year-old siblings of children with cancer. The program comprised 12 sessions conducted once a week. The effects of the intervention were assessed in terms of self-esteem, anxiety, depression, and problem behavior. Self-esteem significantly improved after intervention compared with pretest. Children showed improved scores in externalizing problems and total behavior problems; however, anxiety and depression did not change. The study results indicated that the art intervention program helped improve the self-esteem and helped reduce somatic symptoms, aggressiveness, externalizing problems, and emotional instability among problem behaviors of siblings of children with cancer. However, the study was limited by its small sample size and the lack of a control group. Therefore, the study design allows no firm conclusions, and a randomized controlled trial is needed to investigate the effectiveness of the program.
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Affiliation(s)
| | - Sungsil Hong
- Kangwon National University, Samcheok-si, Gangwon-do, Korea
| | - Ho Ran Park
- The Catholic University of Korea, Seocho-gu, Seoul, Korea
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23
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Cevik Y, Kelleci M, Golbasi Z, Caykoylu A, Das M. Epidemiological Survey and Mspss Scores of 260 Suicide Attempters Presenting to Two Emergency Departments in Turkey. HONG KONG J EMERG ME 2017. [DOI: 10.1177/102490791101800607] [Citation(s) in RCA: 2] [Impact Index Per Article: 0.3] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/15/2022] Open
Abstract
Introduction The aim of this study was to determine the epidemiological characteristics of suicide attempt cases who were admitted to the emergency departments and to determine their level of social support and related factors by using multidimensional scale of perceived social support (MSPSS). Methods This study was conducted simultaneously in two different centres between February 23 and June 31, 2009. Totally 260 suicidal cases who were admitted to the emergency departments were included in the study after obtaining the consents. Related derived data were collected with a questionnaire. The questionnaire determined epidemiological characteristics of suicide attempters by using MSPSS derived data. The data were analysed with percentage, mean, t test, ANOVA, and Scheffe test. Results About 70% of all cases were female and 63.1% of them were between 16 and 25 years of age. The main causes leading to suicide attempts were family problems (41.9%), financial problems (11.2%), and peer suicide attempts (5.4%). Drug use was the most common suicide method both in males and females. The MSPSS score was 52.47±17.81 (mean±SD, range=12-84). While being a member of a broken family, being widow/divorced, previously diagnosed mental disorder affected social support scores negatively, being a student or having a high level of education affected scores positively. Conclusion Family problems, financial problems, 16-25 age group, female sex, being divorced/widowed, being a member of broken family, chronic physical and psychological problems, and lower level of perceived social support are main characteristics associated with suicide attempts. (Hong Kong j.emerg.med. 2011;18:412-420)
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Affiliation(s)
| | - M Kelleci
- Cumhuriyet University Faculty of Health Sciences, Department of Nursing, Sivas, Turkey
| | - Z Golbasi
- Cumhuriyet University Faculty of Health Sciences, Department of Nursing, Sivas, Turkey
| | - A Caykoylu
- Ankara Ataturk Research and Training Hospital, Department of Psychiatry, Ankara, Turkey
| | - M Das
- Ankara Ataturk Research and Training Hospital, Department of Emergency, Ankara, Turkey
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24
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Yu J, Bang KS. Concept Analysis of Stress in Siblings of Patients with Childhood Cancer. CHILD HEALTH NURSING RESEARCH 2017. [DOI: 10.4094/chnr.2017.23.2.190] [Citation(s) in RCA: 2] [Impact Index Per Article: 0.3] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/06/2022] Open
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Morrison A, Gullón-Rivera AL. Supporting Siblings of Neonatal Intensive Care Unit Patients: A NICU Social Story™ as an Innovative Approach. J Pediatr Nurs 2017; 33:91-93. [PMID: 27979495 DOI: 10.1016/j.pedn.2016.12.002] [Citation(s) in RCA: 11] [Impact Index Per Article: 1.4] [Reference Citation Analysis] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 09/15/2016] [Accepted: 12/02/2016] [Indexed: 10/20/2022]
Affiliation(s)
- Alexa Morrison
- Department of Family & Consumer Sciences, Western Michigan University, 1903 West Michigan Ave., Kalamazoo, MI 49008-5322, United States.
| | - Angel L Gullón-Rivera
- Department of Family & Consumer Sciences, Western Michigan University, 1903 West Michigan Ave., Kalamazoo, MI 49008-5322, United States.
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Tasker SL, Stonebridge GGS. Siblings, You Matter: Exploring the Needs of Adolescent Siblings of Children and Youth With Cancer. J Pediatr Nurs 2016; 31:712-722. [PMID: 27439791 DOI: 10.1016/j.pedn.2016.06.005] [Citation(s) in RCA: 12] [Impact Index Per Article: 1.3] [Reference Citation Analysis] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 01/21/2016] [Revised: 06/03/2016] [Accepted: 06/21/2016] [Indexed: 10/21/2022]
Affiliation(s)
- Susan L Tasker
- University of Victoria, Department of Educational Psychology & Leadership Studies, Canada.
| | - Genevieve G S Stonebridge
- University of Victoria, Department of Educational Psychology & Leadership Studies, Canada; Clinical Counsellor, InspireHealth, Supportive Cancer Care, Victoria, BC, Canada
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Turner-Sack AM, Menna R, Setchell SR, Maan C, Cataudella D. Psychological Functioning, Post-Traumatic Growth, and Coping in Parents and Siblings of Adolescent Cancer Survivors. Oncol Nurs Forum 2016; 43:48-56. [PMID: 26679444 DOI: 10.1188/16.onf.48-56] [Citation(s) in RCA: 18] [Impact Index Per Article: 2.0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/17/2022]
Abstract
PURPOSE/OBJECTIVES To examine psychological functioning, post-traumatic growth (PTG), coping, and cancer-related characteristics of adolescent cancer survivors' parents and siblings.
. DESIGN Descriptive, correlational.
. SETTING Children's Hospital of Western Ontario in London, Ontario, Canada.
. SAMPLE Adolescents who finished cancer treatment 2-10 years prior (n = 31), as well as their parents (n = 30) and siblings (n = 18).
. METHODS Participants completed self-report measures of psychological distress, PTG, life satisfaction, coping, and cancer-related characteristics.
. MAIN RESEARCH VARIABLES Psychological functioning, PTG, and coping.
. FINDINGS Parents' and siblings' PTG levels were similar to survivors' PTG levels; however, parents reported higher PTG than siblings. Parents who used less avoidant coping, were younger, and had higher life satisfaction experienced less psychological distress. Parents whose survivor children used more active coping reported less psychological distress. Siblings who were older used more active coping, and the longer it had been since their brother or sister was diagnosed, the less avoidant coping they used.
. CONCLUSIONS Childhood and adolescent cancer affects survivors' siblings and parents in unique ways.
. IMPLICATIONS FOR NURSING Relationship to the survivor, use of coping strategies, life satisfaction, and time since diagnosis affect family members' postcancer experiences.
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Affiliation(s)
| | | | | | - Cathy Maan
- Children's Hospital London Health Science Center
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28
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Neville A, Simard M, Hancock K, Rokeach A, Saleh A, Barrera M. The Emotional Experience and Perceived Changes in Siblings of Children With Cancer Reported During a Group Intervention. Oncol Nurs Forum 2016; 43:E188-94. [DOI: 10.1188/16.onf.e188-e194] [Citation(s) in RCA: 13] [Impact Index Per Article: 1.4] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/17/2022]
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Lovell B, Wetherell MA. The psychophysiological impact of childhood autism spectrum disorder on siblings. RESEARCH IN DEVELOPMENTAL DISABILITIES 2016; 49-50:226-234. [PMID: 26720849 DOI: 10.1016/j.ridd.2015.11.023] [Citation(s) in RCA: 29] [Impact Index Per Article: 3.2] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Track Full Text] [Subscribe] [Scholar Register] [Received: 03/18/2015] [Revised: 10/21/2015] [Accepted: 11/24/2015] [Indexed: 06/05/2023]
Abstract
OBJECTIVE The negative impact of caring for a child with autism spectrum disorder (ASD) on parents' psychophysiological functioning has been widely evidenced. However, siblings, who also face emotional, social and physical challenges associated with having a brother/sister with ASD, have been less widely studied. This study examined the psychophysiological impact of childhood ASD on siblings. METHODS A sample of 25 siblings of children with ASD (and their mothers) and a control group of 20 siblings of neuro-typical children (and their mothers) completed questionnaires assessing: (a) demographic and lifestyle information, (b) family characteristics, (c) child behaviour problems, (d) social support and (e) depressive symptomology. Saliva samples were collected at several time points on two consecutive days, and estimates of the cortisol awakening response (CAR), diurnal cortisol slope and mean diurnal cortisol output were derived. RESULTS Total depressive symptoms were higher in siblings of children with ASD compared with controls. Group differences with respect to depressive symptomology were driven more by emotional than functional problems. With respect to physiological functioning, groups were comparable on all cortisol indices. In siblings of children with ASD, social support, especially from parents and close friends, predicted total depressive symptoms, as did the behaviour problems of their brother/sister with ASD. CONCLUSION Siblings of children with ASD experience greater emotional problems and overall depressive symptoms compared with a control group. Interventions that enhance social support, as well as helping siblings better understand the behaviour problems of their brother/sister with ASD, might be effective for alleviating depressive symptoms.
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Affiliation(s)
- Brian Lovell
- Department of Psychology, Northumbria University, Newcastle upon Tyne NE1 8ST, UK.
| | - Mark A Wetherell
- Department of Psychology, Northumbria University, Newcastle upon Tyne NE1 8ST, UK
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Buchbinder D, Oeffinger K, Franco-Villalobos C, Yasui Y, Alderfer MA, Armstrong GT, Casillas J, Ford J, Krull KR, Leisenring W, Recklitis C, Robison LL, Zeltzer LK, Lown EA. Tobacco Use Among Siblings of Childhood Cancer Survivors: A Report From the Childhood Cancer Survivor Study. Pediatr Blood Cancer 2016; 63:326-33. [PMID: 26305712 PMCID: PMC4715577 DOI: 10.1002/pbc.25719] [Citation(s) in RCA: 3] [Impact Index Per Article: 0.3] [Reference Citation Analysis] [Abstract] [Key Words] [MESH Headings] [Grants] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 06/02/2015] [Accepted: 08/02/2015] [Indexed: 11/09/2022]
Abstract
BACKGROUND Having a brother or sister with childhood cancer may influence health behaviors during adulthood. The aim of this study was to compare tobacco use in siblings of survivors with peers and to identify factors associated with sibling tobacco use. PROCEDURES A retrospective cohort study was conducted using adult siblings (N = 1,974) of 5+ year cancer survivors in the Childhood Cancer Survivor Study (CCSS) and participants (N = 24,105, weighted to match CCSS) in the 2007 National Health Interview Survey. Self-reported tobacco use, sociodemographic, and cancer-related risk factors were analyzed. RESULTS Siblings were equally likely to have ever smoked compared to their peers (odds ratio [OR] 1.02, 95% confidence interval [CI] 0.93-1.12). Siblings were less likely to be current smokers (OR 0.83, 95%CI 0.73-0.94), but more likely to be former smokers (OR 1.21, 95%CI 1.08-1.35). Siblings with low education were more likely to ever smoke (OR 1.51, 95%CI 1.15-2.00) and be current smokers (OR 1.67, 95%CI 1.24-2.26) compared to their peers. Among siblings, risk factors for current tobacco use included the following: low income <$20,000 (OR 1.66, 95%CI 1.09-2.54), low education (OR 6.68, 95%CI 4.07-10.97), psychological distress (OR 5.36, 95%CI 2.21-13.02), and heavy alcohol use (OR 3.68, 95%CI 2.50-5.41). CONCLUSIONS Siblings of survivors take up smoking at similar rates to their peers, but are more likely to quit. Efforts are needed to address disparities by providing greater psychosocial support and education for the lowest socioeconomic status families facing childhood cancer.
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Affiliation(s)
- David Buchbinder
- Department of Pediatrics and Division of Hematology at Children’s Hospital of Orange County, Orange, California
| | | | | | - Yutaka Yasui
- Department of Biostatistics, School of Public and Health, University of Alberta, Alberta, Canada
| | - Melissa A. Alderfer
- Center for Healthcare Delivery Science, Nemours Children’s Health System, Wilmington, DE & Department of Pediatrics, Sidney Kimmel Medical College at Thomas Jefferson University, Philadelphia, PA
| | - Gregory T. Armstrong
- Department of Epidemiology and Cancer Control, St. Jude Children’s Research Hospital, Memphis, Tennessee
| | - Jacqueline Casillas
- David Geffen School of Medicine at University of California at Los Angeles (UCLA) and UCLA Jonsson Comprehensive Cancer Center, Los Angeles, California
| | - Jennifer Ford
- Memorial Sloan-Kettering Cancer Center, New York, New York
| | - Kevin R. Krull
- Department of Epidemiology and Cancer Control, St. Jude Children’s Research Hospital, Memphis, Tennessee
| | - Wendy Leisenring
- Cancer Prevention Program at Fred Hutchinson Cancer Research Center, Seattle, Washington
| | - Christopher Recklitis
- Perini Family Survivors’ Center, Dana-Farber Cancer Institute, Boston, Massachusetts
| | - Leslie L. Robison
- Department of Epidemiology and Cancer Control, St. Jude Children’s Research Hospital, Memphis, Tennessee
| | - Lonnie K. Zeltzer
- David Geffen School of Medicine at University of California at Los Angeles (UCLA) and UCLA Jonsson Comprehensive Cancer Center, Los Angeles, California
| | - E. Anne Lown
- Department of Social and Behavioral Sciences, University of California at San Francisco, San Francisco, California
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Gerhardt CA, Lehmann V, Long KA, Alderfer MA. Supporting Siblings as a Standard of Care in Pediatric Oncology. Pediatr Blood Cancer 2015; 62 Suppl 5:S750-804. [PMID: 26700924 DOI: 10.1002/pbc.25821] [Citation(s) in RCA: 92] [Impact Index Per Article: 9.2] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 07/01/2015] [Accepted: 09/27/2015] [Indexed: 11/09/2022]
Abstract
In this study, evidence is provided for supporting siblings as a standard of care in pediatric oncology. Using Medline, PsycInfo, and CINAHL, a systematic search of articles published over the past two decades about siblings of children with cancer was conducted. A total of 125 articles, which were primarily descriptive studies, were evaluated by the four investigators using Grading of Recommendations Assessment, Development, and Evaluation (GRADE) criteria. There is moderate-quality evidence, as well as support from community stakeholders, to justify a strong recommendation that siblings of children with cancer should be provided with psychosocial services and that parents and professionals are advised about how to meet siblings' needs.
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Affiliation(s)
- Cynthia A Gerhardt
- Center for Biobehavioral Health, The Research Institute at Nationwide Children's Hospital and The Ohio State University, Columbus, Ohio
| | - Vicky Lehmann
- Center for Biobehavioral Health, The Research Institute at Nationwide Children's Hospital and The Ohio State University, Columbus, Ohio
| | - Kristin A Long
- Department of Psychological and Brain Sciences, Boston University, Boston, Massachusetts
| | - Melissa A Alderfer
- Nemours Children's Health System, Wilmington DE and Sidney Kimmel Medical College, Thomas Jefferson University, Philadelphia, Pennsylvania
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32
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Zegaczewski T, Chang K, Coddington J, Berg A. Factors Related to Healthy Siblings’ Psychosocial Adjustment to Children With Cancer. J Pediatr Oncol Nurs 2015; 33:218-27. [PMID: 26483426 DOI: 10.1177/1043454215600426] [Citation(s) in RCA: 16] [Impact Index Per Article: 1.6] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/16/2022] Open
Abstract
Purpose: To identify factors related to the psychosocial adjustment of healthy siblings of children with cancer (HSCC). Design and Method: An integrative review was conducted. Controlled vocabularies relevant to siblings, pediatrics, children, neoplasms, and psychosocial adaptation were used to search Cumulative Index to Nursing & Allied Health Literature and PubMed. Articles that met inclusion criteria (eg, quantitative studies related to HSCC’s psychosocial adjustment; had sample sizes of at least 30; and HSCC age between 1 and 19 years) were reviewed. Key findings of selected articles were analyzed according to sibling characteristics, social support, and contextual factors. Results: Seven nonexperimental and 5 quasi-experimental studies were reviewed. HSCC’s characteristics (eg, age, gender), perceived social support from family and summer camp, and perceived contextual factors (eg, role overload, family adaptability) were significant factors that correlated with HSCC’s psychosocial adjustment. Conclusion: When caring for a child diagnosed with cancer, nurses need to include HSCC in the assessment of a family unit’s adaptation to cancer distress and provide appropriate interventions to promote HSCC’s psychosocial well-being.
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Affiliation(s)
| | | | | | - Abby Berg
- Purdue University, West Lafayette, IN, USA
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Humphrey LM, Hill DL, Carroll KW, Rourke M, Kang TI, Feudtner C. Psychological Well-Being and Family Environment of Siblings of Children with Life Threatening Illness. J Palliat Med 2015; 18:981-4. [PMID: 26393493 DOI: 10.1089/jpm.2015.0150] [Citation(s) in RCA: 17] [Impact Index Per Article: 1.7] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/12/2022] Open
Abstract
BACKGROUND The psychological well-being of siblings of children with life threatening illness remains largely uncharted. Pediatric cancer research suggests that a supportive family environment may protect the psychological well-being of siblings. OBJECTIVE We hypothesized that (1) siblings of pediatric palliative care patients would show clinical/behavioral scores that were elevated but that rates of serious psychopathology would be comparable to the general population of children their age; and (2) higher family functioning scores would be associated with lower clinical scores and higher adaptive scores for these siblings. METHODS We conducted an observational study with families in which a patient receiving palliative care had one or more siblings between the ages of 6 and 11. Parents completed the Behavioral Assessment System for Children, Second Edition (BASC-2) to assess the siblings' psychological well-being and the Family Assessment Device (FAD) to assess the family environment. RESULTS Twenty-four parents reported data for 30 siblings. Only three siblings scored in the clinical range on a BASC-2 composite clinical scale, and 11 siblings scored in the at-risk range on one or more composite scales. Higher FAD scores predicted significantly higher externalization composite clinical scores (7.54, 95% CI: 1.12, 13.97, p < 0.05) and significantly higher behavioral composite scores (7.88, 95% CI: 1.55, 14.21, p < 0.05). DISCUSSION Siblings of pediatric palliative care patients are not experiencing lower psychological well-being than the general population. The prediction that a positive family environment would be associated with higher levels of psychological health was supported.
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Affiliation(s)
| | - Douglas L Hill
- 2 The Children's Hospital of Philadelphia , Philadelphia, Pennsylvania
| | - Karen W Carroll
- 2 The Children's Hospital of Philadelphia , Philadelphia, Pennsylvania
| | - Mary Rourke
- 3 Widener University , Chester, Pennsylvania
| | - Tammy I Kang
- 2 The Children's Hospital of Philadelphia , Philadelphia, Pennsylvania
| | - Chris Feudtner
- 2 The Children's Hospital of Philadelphia , Philadelphia, Pennsylvania
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Mathé J, Pagnat M, Flahault C. La fratrie face au cancer pédiatrique : état des lieux des connaissances de l’impact du cancer pédiatrique au regard du fonctionnement familial. PSYCHO-ONCOLOGIE 2015. [DOI: 10.1007/s11839-015-0532-4] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/27/2022]
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Mandleco B, Webb AEM. Sibling perceptions of living with a young person with Down syndrome or autism spectrum disorder: an integrated review. J SPEC PEDIATR NURS 2015; 20:138-56. [PMID: 25963838 DOI: 10.1111/jspn.12117] [Citation(s) in RCA: 29] [Impact Index Per Article: 2.9] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 11/06/2014] [Revised: 02/23/2015] [Accepted: 03/02/2015] [Indexed: 11/29/2022]
Abstract
PURPOSE This integrative review synthesized current information from 28 research articles meeting inclusion criteria that examined sibling experiences when living with a young person with Down syndrome or autism spectrum disorder. CONCLUSIONS Five themes emerged related to sibling experiences: their knowledge of the condition, relationships with others, perceptions of the condition, emotional reactions to the situation, and behavioral/personality outcomes. PRACTICE IMPLICATIONS Nurses caring for families raising youth with Down syndrome or autism spectrum disorder can enhance sibling development by providing individual interventions reflecting siblings' perceptions of the experience.
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Kim JH, Park EC, Yeom H, Kwon JA, Lee SG. Effects of Offspring-Related Characteristics on Depressive Disorder among Cancer Patients and Survivors. Asian Pac J Cancer Prev 2015; 16:4531-6. [DOI: 10.7314/apjcp.2015.16.11.4531] [Citation(s) in RCA: 1] [Impact Index Per Article: 0.1] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/10/2022] Open
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Incledon E, Williams L, Hazell T, Heard TR, Flowers A, Hiscock H. A review of factors associated with mental health in siblings of children with chronic illness. J Child Health Care 2015; 19:182-94. [PMID: 24270987 DOI: 10.1177/1367493513503584] [Citation(s) in RCA: 28] [Impact Index Per Article: 2.8] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 11/16/2022]
Abstract
This article reviews the literature on modifiable factors associated with mental health in siblings of children with chronic illness. Three clinical databases were searched. A total of 17 studies met the inclusion criteria. Several key themes emerged from the review. Better sibling mental health was associated with camp attendance, perceived parent/peer support, illness education and enhancing control through cognitive coping strategies and routine. Parental and sibling psychoeducation interventions and social support may enhance children's mental health when their sibling has a chronic illness.
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Affiliation(s)
| | | | - Trevor Hazell
- Hunter Institute of Mental Health, Australia; University of Newcastle, Australia
| | - Todd R Heard
- Hunter Institute of Mental Health, Australia; University of Newcastle, Australia
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Yu J, Bang KS. Perceived Alienation of, and Social Support for, Siblings of Children With Cancer. J Pediatr Oncol Nurs 2015; 32:410-6. [PMID: 25612834 DOI: 10.1177/1043454214563753] [Citation(s) in RCA: 16] [Impact Index Per Article: 1.6] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/16/2022] Open
Abstract
This descriptive study was performed to identify the relationships among alienation, general social support, and nurses' support for the siblings of children with cancer. The participants were 84 siblings of children with cancer. Alienation was measured by the revised version of Dean's Alienation Scale, and general social support was quantified by the revised version of Dubow and Ullman's Social Support Appraisal Scale. For nurses' support, Murray's Nurse-Sibling Social Support Questionnaire was used. Data were collected from July 2011 to December 2011. The participants' alienation was not particularly high (mean = 42.24 ± 12.72), but psychosocial vulnerability was identified from their answers to open-ended questions. The participants' perceived alienation showed a negative correlation with general social support, but no relationship with nurses' support. Although direct relationships between nurses' support and the siblings' alienation were not found in this study, the siblings perceived that the support of nurses was moderately helpful. Nurses can help siblings by providing support.
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Affiliation(s)
- Juyoun Yu
- Seoul National University, Seoul, South Korea
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Hartling L, Milne A, Tjosvold L, Wrightson D, Gallivan J, Newton AS. A systematic review of interventions to support siblings of children with chronic illness or disability. J Paediatr Child Health 2014; 50:E26-38. [PMID: 20598075 DOI: 10.1111/j.1440-1754.2010.01771.x] [Citation(s) in RCA: 44] [Impact Index Per Article: 4.0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Indexed: 11/30/2022]
Abstract
AIM Chronic illness or disability in children can have a deleterious effect on the psychosocial health of well siblings. This systematic review synthesised evidence from studies evaluating sibling-oriented care aimed at improving behavioural and emotional outcomes in well siblings of children with chronic illness or disability. METHODS Twenty electronic databases were searched. Study selection, data extraction and assessment of methodological quality were performed by two independent reviewers. RESULTS Five controlled and nine uncontrolled studies were included. In higher-quality controlled trials, benefits of sibling-oriented care included reduced anxiety, improved mood and behavioural adjustment; however, these findings were not consistently demonstrated across studies. Study differences made it difficult to determine which sibling care features were most salient. CONCLUSIONS Study findings highlight the potential for enhancing emotional and behavioural outcomes in well siblings. Future evaluations need to clearly identify the intended purpose of the care (what improvements are intended) and which types of siblings are most likely to benefit. This approach may yield more consistent and clinically important results.
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Affiliation(s)
- Lisa Hartling
- Alberta Research Centre for Health Evidence, Department of Pediatrics, Faculty of Medicine and Dentistry and Departments of Pediatrics, Faculty of Medicine and Dentistry, University of Alberta, Stollery Children's Hospital, Patients as Partners, Division of Quality & Service Improvement, Alberta Health Services and Women and Children's Health Research Institute, Edmonton, Alberta, Canada
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40
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Salavati B, Seeman MV, Agha M, Atenafu E, Chung J, Nathan PC, Barrera M. Which Siblings of Children with Cancer Benefit Most from Support Groups? CHILDRENS HEALTH CARE 2014. [DOI: 10.1080/02739615.2013.837820] [Citation(s) in RCA: 7] [Impact Index Per Article: 0.6] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 10/26/2022]
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Sveen J, Eilegård A, Steineck G, Kreicbergs U. They still grieve-a nationwide follow-up of young adults 2-9 years after losing a sibling to cancer. Psychooncology 2013; 23:658-64. [PMID: 24347401 DOI: 10.1002/pon.3463] [Citation(s) in RCA: 50] [Impact Index Per Article: 4.2] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 06/20/2013] [Revised: 10/25/2013] [Accepted: 11/22/2013] [Indexed: 11/08/2022]
Abstract
OBJECTIVES The aims of this study were to assess the prevalence of unresolved grief in bereaved young adult siblings and examine possible contributing factors. METHODS The study was a Swedish population-based study of young adults who had lost a brother or sister to cancer, 2-9 years earlier. Of 240 eligible siblings, 174 (73%) completed a study-specific questionnaire. This study focused on whether the respondents had worked through their grief over the sibling's death and to what extent. RESULTS A majority (54%) of siblings stated that they had worked through their grief either 'not at all' or 'to some extent' at the time of investigation. In multiple regression analyses with unresolved grief as the dependent variable, 21% of the variance was explained by lack of social support and shorter time since loss. CONCLUSION The majority of bereaved young adults had not worked through their grief over the sibling's death. A small group of siblings reported that they had not worked through their grief at all, which may be an indicator of prolonged grief. Lack of social support and more recent loss were associated with not having worked through the grief over the sibling's death.
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Affiliation(s)
- Josefin Sveen
- Department of Women's and Children's Health, Childhood Cancer Research Unit, Karolinska Institute, Stockholm, Sweden; Institute of Neuroscience, Psychiatry, Uppsala University, Uppsala, Sweden
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Eilertsen MEB, Eilegård A, Steineck G, Nyberg T, Kreicbergs U. Impact of Social Support on Bereaved Siblings’ Anxiety. J Pediatr Oncol Nurs 2013; 30:301-10. [DOI: 10.1177/1043454213513838] [Citation(s) in RCA: 40] [Impact Index Per Article: 3.3] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/16/2022] Open
Abstract
Purpose:To assess adolescent and young adult siblings’ perception of social support prior to and following the loss of their brother or sister to cancer, 2 to 9 years earlier, and their anxiety at follow-up. Method: In 2009, 174 (73%) bereaved siblings (12-25 years) participated in a nationwide, long-term follow-up study in Sweden using an anonymous study-specific questionnaire. The Hospital Anxiety and Depression Scale was used to measure self-assessed anxiety. Results: Siblings had a higher risk of anxiety if they perceived their need for social support was unsatisfied during their brother or sisters’ last month before death, relative risk (RR) = 3.6 (95% confidence interval [CI] = 1.8-7.3); time after death, RR = 2.9 (95% CI = 1.5-5.6); and at follow-up, RR = 3.8 (95% CI = 2.0-7.2). Furthermore, a higher risk for anxiety was shown for siblings if they did not perceive that their parents and neighbors cared for them after their brother or sisters’ death, RR = 2.7 (95% CI = 1.3-5.5), RR = 5.4 (95% CI = 1.3-21.9), respectively. Conclusion: Bereaved siblings had a greater probability to report self-assessed anxiety if they perceived that their need for social support was not satisfied prior to and following death. Information from both nurses and other health care professionals to families about the impact of social support may contribute to lessen the siblings’ risk of anxiety.
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Affiliation(s)
| | | | - Gunnar Steineck
- Karolinska Institutet, Stockholm, Sweden
- Gothenburg University, Gothenburg, Sweden
| | | | - Ulrika Kreicbergs
- Karolinska Institutet, Stockholm, Sweden
- Sophiahemmet University College, Stockholm, Sweden
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Karlson CW, Smith ML, Haynes S, Faith MA, Pierce J, Elkin TD, Megason G. Risk for Psychosocial Problems in Pediatric Cancer: Impact of Socioeconomics. CHILDRENS HEALTH CARE 2013. [DOI: 10.1080/02739615.2013.816602] [Citation(s) in RCA: 13] [Impact Index Per Article: 1.1] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 01/29/2023]
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Khatib Y, Bhui K, Stansfeld SA. Does social support protect against depression & psychological distress? Findings from the RELACHS study of East London adolescents. J Adolesc 2013; 36:393-402. [DOI: 10.1016/j.adolescence.2013.01.001] [Citation(s) in RCA: 26] [Impact Index Per Article: 2.2] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Received: 07/05/2011] [Revised: 11/24/2012] [Accepted: 01/01/2013] [Indexed: 11/16/2022]
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Wu YP, Geldhof GJ, Roberts MC, Parikshak S, Amylon MD. Initial Examination of a New Questionnaire Assessing Perceived Social Support in Summer Camp and Home Environments for Children With Cancer and Their Siblings. CHILDRENS HEALTH CARE 2013. [DOI: 10.1080/02739615.2013.753817] [Citation(s) in RCA: 5] [Impact Index Per Article: 0.4] [Reference Citation Analysis] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 10/27/2022]
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Prchal A, Graf A, Bergstraesser E, Landolt MA. A two-session psychological intervention for siblings of pediatric cancer patients: a randomized controlled pilot trial. Child Adolesc Psychiatry Ment Health 2012; 6:3. [PMID: 22236392 PMCID: PMC3398278 DOI: 10.1186/1753-2000-6-3] [Citation(s) in RCA: 26] [Impact Index Per Article: 2.0] [Reference Citation Analysis] [Abstract] [Key Words] [Track Full Text] [Download PDF] [Figures] [Journal Information] [Submit a Manuscript] [Subscribe] [Scholar Register] [Received: 09/15/2011] [Accepted: 01/11/2012] [Indexed: 11/10/2022] Open
Abstract
BACKGROUND Since siblings of pediatric cancer patients are at risk for emotional, behavioral, and social problems, there is considerable interest in development of early psychological interventions. This paper aimed at evaluating the effectiveness of a two-session psychological intervention for siblings of newly diagnosed pediatric cancer patients. METHODS Thirty siblings age 6-17 years were randomly assigned to an intervention group or an active control group with standard psychosocial care. The manualized intervention provided to siblings in the first 2 months after the cancer diagnosis of the ill child included medical information, promotion of coping skills, and a psychoeducational booklet for parents. At 4 to 6 weeks, 4 months, and 7 months after the diagnosis, all siblings and their parents completed measures (from standardized instruments) of social support, quality of life, medical knowledge, posttraumatic stress symptoms, and anxiety. RESULTS At follow-up siblings in the intervention group showed better psychological well-being, had better medical knowledge, and reported receiving social support from more people. However, the intervention had no effects on posttraumatic stress symptoms and anxiety. CONCLUSIONS The results of this pilot trial suggest that a two-session sibling intervention can improve siblings' adjustment, particularly psychological well-being, in the early stage after a cancer diagnosis. TRIAL REGISTRATION ClinicalTrials.gov NCT00296907.
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Affiliation(s)
- Alice Prchal
- Department of Psychosomatics and Psychiatry, University Children's Hospital Zurich, Zurich, Switzerland.
| | - Anna Graf
- Department of Psychosomatics and Psychiatry, University Children's Hospital Zurich, Zurich, Switzerland,Children's Research Center, University Children's Hospital Zurich, Zurich, Switzerland
| | - Eva Bergstraesser
- Children's Research Center, University Children's Hospital Zurich, Zurich, Switzerland,Department of Pediatric Oncology, University Children's Hospital Zurich, Zurich Switzerland
| | - Markus A Landolt
- Department of Psychosomatics and Psychiatry, University Children's Hospital Zurich, Zurich, Switzerland,Children's Research Center, University Children's Hospital Zurich, Zurich, Switzerland
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Abstract
The diagnosis and treatment of children and adolescents with cancer has a tremendous and lasting effect on the patients, their families, and other individuals in their social network. It carries a host of psychological and behavioral ramifications, from questions of mortality to changes in levels of functioning in multiple domains. In this review the authors address the psychosocial and treatment-related issues that arise in children with cancer, with attention to the adjustment to cancer at different developmental stages, mood and anxiety issues, treatment-related psychiatric sequelae, and the challenges faced by childhood cancer survivors.
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Affiliation(s)
- Brian P Kurtz
- Department of Psychiatry, Division of Pediatric Psychiatry, Tufts Medical Center and Floating Hospital for Children at Tufts Medical Center, 800 Washington Street #1007, Boston, MA 02111, USA
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The impact of educating parents of leukemic children on the patients' quality of life. IRANIAN RED CRESCENT MEDICAL JOURNAL 2011; 13:550-5. [PMID: 22737526 PMCID: PMC3371991] [Citation(s) in RCA: 0] [Impact Index Per Article: 0] [Reference Citation Analysis] [Abstract] [Key Words] [Download PDF] [Subscribe] [Scholar Register] [Received: 01/20/2011] [Accepted: 05/09/2011] [Indexed: 11/09/2022]
Abstract
BACKGROUND The quality of life of children with leukemia is reduced by fear and anxiety of parents after diagnosis, lack of information about the disease, treatments, and care of the child. This study aims to evaluate the effect of educating parents of leukemic children on the patients' quality of life. METHODS In this interventional study, sixty parents of ALL children who met inclusion criteria were selected using simple random sampling method, and assigned to the experimental and control groups. The study tool included a valid and reliable questionnaire (TNO-AZL), that was filled in through interview by parents before and two months after the intervention for both groups. The first part of the questionnaire included demographic items and the second part (7 dimensions, each with 8 sections) contained questions related to the quality of life. The scores could range between 56 and 280 and a higher score represented a better quality of life. The intervention included three one-hour classes composed of lecture and question-answer sessions which were held for groups of 4-6 participants, accompanied by a booklet. RESULTS Before the intervention, the quality of life score in the experimental and control groups was 180.83±14.43 and 174.28±20.72, respectively; after the intervention, these figures changed to 226.9±11.76 and 174.41±20.42 respectively. Paired samples T-test proved a significant increase in the quality of life in the experimental group. CONCLUSION Parent education successfully increased the quality of life of leukemic children; therefore, parental consultation sessions and educational programs are recommended.
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Alderfer MA, Long KA, Lown EA, Marsland AL, Ostrowski NL, Hock JM, Ewing LJ. Psychosocial adjustment of siblings of children with cancer: a systematic review. Psychooncology 2010; 19:789-805. [PMID: 19862680 DOI: 10.1002/pon.1638] [Citation(s) in RCA: 261] [Impact Index Per Article: 17.4] [Reference Citation Analysis] [Abstract] [Track Full Text] [Journal Information] [Subscribe] [Scholar Register] [Indexed: 11/10/2022]
Abstract
OBJECTIVES To promote a broader understanding of the psychosocial impact of childhood cancer on siblings, a systematic review was undertaken. Directions for future research are proposed and clinical strategies are suggested for addressing the needs of these children. METHODS Searches of Medline, PsycINFO and CINAHL revealed 65 relevant qualitative, quantitative, or mixed methods' papers published between 1997 and 2008. These papers were rated for scientific merit and findings were extracted for summary. RESULTS Siblings of children with cancer do not experience elevated mean rates of psychiatric disorders, but a significant subset experiences post-traumatic stress symptoms, negative emotional reactions (e.g. shock, fear, worry, sadness, helplessness, anger, and guilt), and poor quality of life in emotional, family, and social domains. In general, distress is greater closer to time of diagnosis. School difficulties are also evident within 2 years of diagnosis. Qualitative studies reveal family-level themes such as loss of attention and status as well as positive outcomes including increased sibling maturity and empathy. CONCLUSIONS Research regarding siblings of children with cancer continues to be methodologically limited. The conclusions of qualitative and quantitative studies differ considerably. We propose a research agenda to propel this field forward including greater attention to alterations in normative development (as opposed to psychiatric conditions), development of more appropriate quantitative measures, examination of potential moderators of adaptation, and use of prospective longitudinal designs. Siblings of children with cancer are a psychosocially at-risk group and should be provided with appropriate supportive services.
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Affiliation(s)
- Melissa A Alderfer
- The Children's Hospital of Philadelphia and University of Pennsylvania School of Medicine, Philadelphia, PA 19104, USA.
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