Activities of Daily Living in Survivors of Childhood Brain Tumor

Demers, Catherine; Gélinas, Isabelle; Carret, Anne‐Sophie

doi:10.5014/ajot.2016.014993

Cited by 11 publications

(26 citation statements)

References 33 publications

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“…Education experiences were often described as problematic including missing school, cognitive difficulties—feeling misunderstood, facing bullying and social isolation . Survivors were more likely to be unemployed later in life when compared with age and gender‐matched controls and other cancer survivors, with reported unemployment rates varying from 8% to 70%. Issues in attaining or keeping a job included fatigue, poor concentration, physical issues (eg, epilepsy), cognitive difficulties, and poor social skills .…”

Section: Resultsmentioning

confidence: 99%

“…Issues in attaining or keeping a job included fatigue, poor concentration, physical issues (eg, epilepsy), cognitive difficulties, and poor social skills . Some survivors had sheltered work, a setting in which people with disabilities receive services and training to develop work‐related skills and behaviours . AYA survivors were found to have significantly lower levels of vocational identity and career readiness (ie, ability to perform work tasks and social skills) when compared with AYA noncancer survivors .…”

Section: Resultsmentioning

confidence: 99%

“…Many survivors presented with poor processing speeds, leading to poorer physical and/or mental health, social functioning, and health‐related quality of life . Similarly, language and vocabulary issues were challenging .…”

Section: Resultsmentioning

confidence: 99%

“…Some survivors suffered from impaired motor skills . Motor deficits contributed to social isolation and vocational limitation by restricting the types of activities open to survivors (ie, playing sports or writing) …”

Section: Resultsmentioning

confidence: 99%

“…AYA survivors commonly had endocrine dysfunctions . More specifically, growth hormone deficiency was reported in 22% to 97% of survivors .…”

Section: Resultsmentioning

confidence: 99%

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Long‐term issues and supportive care needs of adolescent and young adult childhood brain tumour survivors and their caregivers: A systematic review

et al. 2019

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Objective Long‐term issues following diagnosis and treatment of a childhood brain tumour often become apparent as the survivor enters adolescence and young adulthood. Their caregivers may additionally face long‐term impacts on their emotional and psychological functioning. This review synthesised evidence on the issues and supportive care needs of adolescent and young adult (AYA) survivors of a brain tumour diagnosed in childhood and their caregivers. Methods Electronic databases were searched up until September 2017. All studies reporting on issues or needs of childhood brain tumour survivors (aged 14‐39) and their caregivers were included. Narrative synthesis methods were used to summarise, integrate, and interpret findings. Results Fifty‐six articles (49 studies) met the inclusion criteria. Social issues (ie, isolation and impaired daily functioning) were most commonly reported by survivors, followed by cognitive (ie, impaired memory and attention) and physical issues (ie, endocrine dysfunctions and fatigue). Survivors experienced poorer social functioning and sexual functioning and were less likely to be employed or have children, when compared with other AYA cancer survivors. Caregivers experienced reduced support as the survivor moved into young adulthood. Caregivers reported uncertainty, increased responsibilities, and problems maintaining their own self–well‐being and family relationships. Few studies reported on supportive care needs. Survivors expressed a need for better educational support and age‐specific psychosocial services. Conclusions Surviving a childhood brain tumour can be particularly challenging for AYA survivors and their caregivers. Robust structured research is needed to identify specific support needs of both survivors and their caregivers and how these can be optimally addressed.

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Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

“…AYA survivors commonly had endocrine dysfunctions . More specifically, growth hormone deficiency was reported in 22% to 97% of survivors .…”

Section: Resultsmentioning

confidence: 99%

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Long‐term issues and supportive care needs of adolescent and young adult childhood brain tumour survivors and their caregivers: A systematic review

et al. 2019

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Unmet support needs in teenage and young adult childhood brain tumour survivors and their caregivers: “it’s all the aftermath, and then you’re forgotten about”

Nicklin

Pointon

Glaser

et al. 2021

Support Care Cancer

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Purpose Teenage and young adult (TYA) survivors of childhood brain tumours and their family caregivers can experience many late effects of treatment that can hamper the transition to living independent lives. Yet, their long-term supportive care needs are largely unknown. We investigated the supportive care needs of TYA survivors and their caregivers and explored the role and perceived use of support. Methods Face-to-face semi-structured interviews were conducted with survivors aged 16–30 (n = 11) who were ≥ 5 years after diagnosis and caregivers (n = 11). Interviews were recorded and transcriptions thematically analysed. Results Four themes emerged: (1) preferences for support and support services (unmet needs). Concerns regarding mental health, employment and financial uncertainty, the desire to live independently, and lack of support were emphasised. (2) Decline in support. Caregivers noted a drop-off in support available when transitioning to adult services. (3) Reasons for not obtaining adequate support. Several barriers to accessing support were raised, including distance and aging out of services. (4) The role of long-term hospital-based follow-up care. Participants highlighted the importance of, and reassurance from, long-term follow-up care but noted a more all-inclusive approach is required. Conclusions Even many years after diagnosis, TYA childhood brain tumour survivors and their caregivers continue to have unmet supportive care needs. Both TYA survivors and their caregivers can benefit from support to meet their unique needs and improve long-term quality of life. Understanding unmet needs and recognising what services are required due to the late effects of treatment is critical to improving long-term quality of survival.

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Rehabilitation and Pediatric Oncology: Supporting Patients and Families During and After Treatment

Paltin

Schofield

Baran

2018

Curr Phys Med Rehabil Rep

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Activities of Daily Living in Survivors of Childhood Brain Tumor

Abstract: Participants had significant limitations in both motor and process skills, which affected their performance in ADLs. Study results emphasize the importance of long-term follow-up and rehabilitation services aimed at improving the functional level and HRQoL of BT survivors.

Cited by 11 publications

References 33 publications

Long‐term issues and supportive care needs of adolescent and young adult childhood brain tumour survivors and their caregivers: A systematic review

Long‐term issues and supportive care needs of adolescent and young adult childhood brain tumour survivors and their caregivers: A systematic review

Unmet support needs in teenage and young adult childhood brain tumour survivors and their caregivers: “it’s all the aftermath, and then you’re forgotten about”

Rehabilitation and Pediatric Oncology: Supporting Patients and Families During and After Treatment

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