The end of cancer treatment experience for children, adolescents, and their parents: A systematic review of the literature

Keller, Mary Conway; King, Courtney; Hart, Leigh; Engelke, Karina; Needham, Andrew; Holden, Elizabeth; Foy, Kelly; Lucas, Richard

doi:10.1080/07347332.2020.1769795

Cited by 18 publications

(40 citation statements)

References 39 publications

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“…Examples of physical health challenges include bodily pains, sleep disturbances, appetite problems and fatigue (Barrera et al, 2021; Ochoa et al, 2020). In a systematic review, Conway Keller et al (2020) observed that most mothers who had traumatic experiences with their child's cancer diagnosis were at a higher risk of post‐traumatic stress syndrome throughout the treatment trajectory.…”

Section: Introductionmentioning

confidence: 99%

Physical and socioeconomic burden of caregiving on family caregivers of children with cancer at a tertiary Hospital in Ghana

et al. 2022

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Background Childhood cancer is proportionately higher in Africa and these result in increased demands on caregivers. The inability of affected children to take care of themselves; coupled with prescribed medical interventions presents physical and social burdens on family caregivers. Aims and methods This study used a qualitative exploratory design to explore the physical and socioeconomic challenges for family caregivers of children diagnosed with cancer and receiving care at one of the biggest tertiary hospitals in Ghana. A total of thirteen family caregivers of children with cancer were interviewed. Findings Two major themes were identified: Burden of care on Physical Health and Socioeconomic burdens of caregiving on the family caregiver. It was reported that family caregivers encounter physical challenges such as Aches and Pains when performing caregiving activities, Loss of Appetite, Fatigue, Compromised Functional State and Sleep Disruption. The second theme, Socioeconomic burdens of caregiving on family caregivers account for the consequences of caregiving on social lives, family relationships, finance and employment. Conclusions and recommendations The study recommends that measures that provided relief for the caregivers such as teaching them to adopt local measures of pain relief such as massage should be encouraged. Policies should adopt measures that encourage caregivers to have some days of rest whiles providing care to their children with cancer. Also, health insurance packages that provide relief for the cost of accessing healthcare, should be extended to children with cancers to support their caregivers.

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Section: Introductionmentioning

confidence: 99%

Physical and socioeconomic burden of caregiving on family caregivers of children with cancer at a tertiary Hospital in Ghana

et al. 2022

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“…Parents are the primary source of support for children with cancer, with many actively involved in care years after treatment completion 3 . While treatment completion is an important milestone, it is also a period of vulnerability for parents 4,5 . Psychological difficulties such as anxiety (19.7% to 43.4%), 6,7 and depression (14.4% to 43.4%) 6,7 are reported.…”

Section: Introductionmentioning

confidence: 99%

Internet‐administered, low‐intensity cognitive behavioral therapy for parents of children treated for cancer: A feasibility trial (ENGAGE)

et al. 2022

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Background: Parents of children treated for cancer may experience mental health difficulties, such as depression and anxiety. There is a lack of evidencebased psychological interventions for parents, with psychological support needs unmet. An internet-administered, guided, low-intensity cognitive behavioral therapy-based (LICBT) self-help intervention may provide a solution. Methods:The feasibility and acceptability of such an intervention was examined using a single-arm feasibility trial (ENGAGE). Primary objectives examined:(1) estimates of recruitment and retention rates; (2) feasibility and acceptability of data collection instruments and procedures; and (3) intervention feasibility and acceptability. Clinical outcomes were collected at baseline, post-treatment (12 weeks), and follow-up (6 months). Results:The following progression criteria were met: sample size was exceeded within 5 months, with 11.0% enrolled of total population invited, study dropout rate was 24.0%, intervention dropout was 23.6%, missing data remained at ≤10% per measure, and no substantial negative consequences related to participation were reported. Intervention adherence was slightly lower than progression criteria (47.9%). Conclusion:Findings suggest an internet-administered, guided, LICBT self-help intervention may represent a feasible and acceptable solution for parents of children treated for cancer. With minor study protocol and intervention modifications, progression to a pilot randomized controlled trial (RCT) and subsequent superiority RCT is warranted.

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“…Significant improvements in childhood cancer treatments have resulted in growing numbers of young survivors worldwide [ 1 , 2 ]. Despite the benefits of cancer treatment, this can be a vulnerable time for parents/caregivers, who can experience poor quality of life (QOL),_ENREF_9 anxiety, depression, loneliness _ENREF_8 [ 3 , 4 , 5 , 6 , 7 ], and fear of their child’s cancer recurring [ 4 , 5 ]. Without intervention, parents’ distress can last years [ 5 , 8 ].…”

Section: Introductionmentioning

confidence: 99%

Providing Psychological Support to Parents of Childhood Cancer Survivors: ‘Cascade’ Intervention Trial Results and Lessons for the Future

Wakefield

Sansom-Daly

McGill

et al. 2021

Cancers

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We conducted a three-armed trial to assess Cascade, a four-module group videoconferencing cognitive behavior therapy (CBT) intervention for parents of childhood cancer survivors currently aged <18 years. We allocated parents to Cascade, an attention control (peer-support group), or a waitlist. The primary outcome was parents’ health-related quality of life (PedsQL-Family Impact/EQ-5D-5L) six months post-intervention. Parents also reported their anxiety/depression, parenting self-agency, fear of recurrence, health service and psychotropic medication use, engagement in productive activities, confidence to use, and actual use of, CBT skills, and their child’s quality of life. Seventy-six parents opted in; 56 commenced the trial. Cascade achieved good parent engagement and most Cascade parents were satisfied and reported benefits. Some parents expressed concerns about the time burden and the group format. Most outcomes did not differ across trial arms. Cascade parents felt more confident to use more CBT skills than peer-support and waitlisted parents, but this did not lead to more use of CBT. Cascade parents reported lower psychosocial health scores for their child than waitlisted parents. Cascade parents’ health service use, psychotropic medication use, and days engaged in productive activities did not improve, despite some improvements in waitlisted parents. Our trial was difficult to implement, but participants were largely satisfied. Cascade did not improve most outcomes, possibly because many parents were functioning well pre-enrolment. We used these findings to improve Cascade and will trial the new version in future.

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The end of cancer treatment experience for children, adolescents, and their parents: A systematic review of the literature

Cited by 18 publications

References 39 publications

Physical and socioeconomic burden of caregiving on family caregivers of children with cancer at a tertiary Hospital in Ghana

Physical and socioeconomic burden of caregiving on family caregivers of children with cancer at a tertiary Hospital in Ghana

Internet‐administered, low‐intensity cognitive behavioral therapy for parents of children treated for cancer: A feasibility trial (ENGAGE)

Providing Psychological Support to Parents of Childhood Cancer Survivors: ‘Cascade’ Intervention Trial Results and Lessons for the Future

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