Persistent impact of illness on families of adult survivors of childhood central nervous system tumors: a population‐based cohort study

Despite methodological limitations, research indicates a strong need for sibling support. Clinical recommendations include identifying at-risk siblings and developing interventions to facilitate family communication and increase siblings' social support, cancer-related knowledge, and treatment involvement. Future longitudinal studies focusing on mechanisms and moderators of siblings' adjustment would inform timing and targets of psychosocial care.

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“…Thirty‐six quantitative papers reported on risk or protective factors, including 2 low in sibling‐specific scientific merit …”

Section: Resultsmentioning

confidence: 99%

Psychosocial functioning and risk factors among siblings of children with cancer: An updated systematic review

et al. 2018

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“…Therefore, these issues may be important to understanding other phenomenon such as the caregivers’ overall psychosocial adjustment; however, they may not be as important to explaining caregivers’ perceptions of competence. In fact, another study of long-term survivors of childhood brain tumors also found that other issues overshadowed age and time since diagnosis in explaining family related phenomenon (Hovén et al, 2011). The results of this study concerning caregivers for AYA survivors of childhood brain tumors confirm previous research as well as provide new insights into the role of the survivor’s health in caregivers’ appraisals about their caregiving.…”

Section: Discussionmentioning

confidence: 99%

“…The demands or burdens experienced by caregivers are associated with reports of their health; caregivers who experience more demands report less optimal health (Klassen et al, 2007; Klassen et al, 2011; Raina et al, 2004; Vance, Eiser, & Horne, 2004). As Raina proposed, caregivers who perceive that their survivor has less than optimal health undergo more caregiver demands (Bandura, 1991; Hovén et al, 2011), a relationship which is also tested in this research. While used as an outcome measure in Raina’s model, caregiver health is tested in terms of its association with caregiver demands because of the long term impact of caregivers’ emotional and physical health on managing the demands of that role (Deatrick et al, 2009; Hardy et al, 2008; Raina et al, 2004).…”

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confidence: 99%

“…In families of brain tumor survivors, members are often concerned about the following factors: the survivors’ abilities before and after treatment; implications of the brain tumor for the future of the child and family; balance between the needs of the family and needs of the child; amount of time and work taken for condition management; ability to meet the needs of the child over the long-term within the context of loss and recovery; and relationships, shared views, mutual support, and flexibility (Anclair, Hoven, Lannering, & Boman, 2009; Aukema, Last, Meeteren, & Grootenhuis, 2011; Deatrick et al, 2009). These concerns continue to impact the family well into adulthood (Hovén, Lannering, Gustafsson, & Boman, 2011; Hutchinson et al, 2009), and therefore family functioning is included in the model for this study as influencing caregiver demand along with survivor and caregiver health.…”

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confidence: 99%

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Competence in caregivers of adolescent and young adult childhood brain tumor survivors.

Deatrick¹,

Hobbie²,

Ogle³

et al. 2014

Health Psychology

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Objective Caregivers of adolescents and young adults (AYA) with complex medical conditions, including brain tumor survivors, have protracted and often complex roles, yet a gap exists in understanding their perceived competence. The aim of this study is to test a hypothesized model based on the theoretical and empirical literature: better caregiver health, better survivor health, and better family functioning contribute directly to fewer caregiving demands, which in turn contribute to greater caregiver competence. Method Telephone interviews using structured self-report questionnaires were conducted in this cross-sectional study with a sample of 186 caregivers (mothers) of childhood brain tumor survivors aged 14–40 years old who live with at least one parent. Structural equation modeling (SEM) was used to test the hypothesized model. Results The final SEM model suggests that survivor health and family functioning directly predict caregiver competence. Caregiver health indirectly predicts caregiver competence through caregiver demands and then family functioning. Family income directly predicts family functioning. The model showed adequate fit (CFI = 0.905, TFI = 0.880, and RMSEA = 0.081). Overall, the model accounted for 45% of variance in caregiver competence. Conclusions For this sample of caregivers of AYA with medically complex conditions, family functioning and the health of survivors are both important to how they evaluate their skills as caregivers. The results of this study underscore the crucial role of care models that focus on optimizing the health of the survivor, caregiver, and family, along with supporting a family centered approach to their care.

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“…Parents of cancer survivors in another study reported persistent but decreasing posttraumatic stress symptoms five years after treatment . For some parents, long‐term psychosocial consequences persist long into survivorship . However, a Swedish study of bereaved parents found that 74% of parents had worked through most or all of their grief by four to nine years after their child's death .…”

Section: Introductionmentioning

confidence: 99%

Persistently low peace of mind in parents of cancer patients: A five‐year follow‐up study

Sisk

Weng

Mack

2019

Pediatric Blood & Cancer

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Background Pediatric cancer affects the well‐being of the entire family. Previously, our group found that 76% of parents experience low peace of mind after diagnosis. Herein, we present a five‐year follow‐up study of these same parents, aiming to determine whether low peace of mind persisted, and what baseline variables associate with persistently low peace of mind. Procedure Cross‐sectional survey of parents of children with cancer between April 2004 and September 2005 within one year of diagnosis, and a follow‐up questionnaire administered at least five years later. Results Sixty‐six percent of parents whose children were living and who were able to be contacted completed follow‐up questionnaires (91/138). Of these parents, 77% (70/91) were parents of disease‐free survivors and 23% (21/91) had recurrent disease. The majority of parents (66%, 53/88) had low peace of mind five years after diagnosis, regardless of relapse status or prognosis. Additionally, 28% of parents of disease‐free survivors reported being very/extremely worried about relapse (18/66), late toxicities (19/66), and late effects (19/66). Each worry was associated with low peace of mind (OR between 9.66 and 20.09 for each worry). In bivariable logistic regression, low peace of mind at five years was negatively associated with trusting the physician completely at baseline, with and without adjustment for relapse status (OR, 0.32; 95% CI, 0.12 to 0.87, P = 0.032, adjusted for relapse). Conclusion Most long‐term studies and interventions have focused on parental bereavement. Our findings show that most parents are changed by pediatric cancer, even when children survive and the future is bright.

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Persistent impact of illness on families of adult survivors of childhood central nervous system tumors: a population‐based cohort study

Cited by 22 publications

References 66 publications

Psychosocial functioning and risk factors among siblings of children with cancer: An updated systematic review

Psychosocial functioning and risk factors among siblings of children with cancer: An updated systematic review

Competence in caregivers of adolescent and young adult childhood brain tumor survivors.

Persistently low peace of mind in parents of cancer patients: A five‐year follow‐up study

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