Lived experiences with unmet supportive care needs in pediatric cancer: Perspective of Chinese children and their parents

Cheng, Lei; Yu, Ling; Huang, Haiying; Duan, Mingxia

doi:10.1016/j.ijnss.2022.09.001

Cited by 4 publications

(1 citation statement)

References 31 publications

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“…Being referred to as ‘the passive, subtle, and unobtrusive activation of relevant mental representations by external, environmental factors’ (p128),22 they were shown to unconsciously underlie different types of health behaviour 23. Consequently, the preferred health behaviour of paediatric cancer survivors,24 25 like follow-up attendance, as well as their well-being26 27 and that of their relatives,28 29 is defined by their very special medical and psychosocial needs 29–31…”

Section: Introductionmentioning

confidence: 99%

VersKiK qualitative study design: actual follow-up needs of paediatric cancer survivors, their informal caregivers and follow-up stakeholder perceptions in Germany

Aleshchenko,

Swart,

Voigt

et al. 2024

BMJ Open

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IntroductionThis article presents the study design of the qualitative part of the VersKiK study (Long-term care, care needs and wellbeing of individuals after cancer in childhood or adolescence: study protocol of a large scale multi-methods non-interventional study) aiming to explore actual follow-up needs of childhood and adolescence cancer survivors and their informal caregivers, gaps in current follow-up care provision and trajectories of cancer survivors’ transition from paediatric to adult healthcare.Methods and analysisWe will conduct up to 30 interviews with survivors of childhood and adolescence cancer and their informal caregivers with up to 20 participant observations of follow-up appointments. The results of these will be discussed in up to four focus groups with healthcare professionals and representatives of self-help groups. The study design aims to evaluate follow-up care after childhood cancer considering perspectives from survivors, their informal caregivers as well as healthcare providers. The combination of different data sources will allow us to get an in-depth understanding of the current state of follow-up care after paediatric cancer in Germany and to suggest recommendations for care improvement.Ethics and disseminationThe VersKiK study was approved by the Ethics Committee Otto von Guericke University on 2 July 2021 (103/21), by the Ethics Committee of Johannes Gutenberg University Mainz on 16 June 2021 (2021-16035), by the Ethics Committee University of Lübeck on 10 November 2021 (21-451), by the Ethics Committee University of Hospital Bonn on 28 February 2022 (05/22). For each part of the qualitative study, a separate written informed consent is prepared and approved accordingly by the ethics committees named above.Trial registration numberRegistered at German Clinical Trial Register, ID: DRKS00026092.

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Section: Introductionmentioning

confidence: 99%

VersKiK qualitative study design: actual follow-up needs of paediatric cancer survivors, their informal caregivers and follow-up stakeholder perceptions in Germany

Aleshchenko,

Swart,

Voigt

et al. 2024

BMJ Open

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“A Really Really Almost Impossible Journey” Perceived Needs and Challenges of Families Impacted by Pediatric Cancer: A Qualitative Analysis

Delemere

Gitonga

Maguire

2023

Comprehensive Child and Adolescent Nursing

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Experiences of Parents of Children with Cancer in the Diagnosis Process: A Qualitative Study

BEKAR,

ERKUL,

EFE

2024

Omega (Westport)

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This study aimed to describe the experiences of parents of children with cancer in the diagnosis process. A descriptive qualitative research design and content analysis method were used. Eleven parents participated in the study. Three main themes emerged, each with related sub-themes: encountering a cancer diagnosis, changes in the lives of those affected by the diagnosis, and coping strategies. Upon their children’s diagnosis, parents reported feelings of guilt, regret, helplessness, devastation, constant thoughts of death, and changes in their lives, with some siblings displaying negative reactions. Some children felt their freedom was restricted, and some refused treatment. Parents coped by distracting their attention, praying, receiving support from their family, relatives or health professionals, and maintaining hope for their children’s recovery. The study concludes that parents of children diagnosed with cancer require support to manage and adapt to the diagnosis process and meet their needs effectively throughout this difficult journey.

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Lived experiences with unmet supportive care needs in pediatric cancer: Perspective of Chinese children and their parents

Cited by 4 publications

References 31 publications

VersKiK qualitative study design: actual follow-up needs of paediatric cancer survivors, their informal caregivers and follow-up stakeholder perceptions in Germany

VersKiK qualitative study design: actual follow-up needs of paediatric cancer survivors, their informal caregivers and follow-up stakeholder perceptions in Germany

“A Really Really Almost Impossible Journey” Perceived Needs and Challenges of Families Impacted by Pediatric Cancer: A Qualitative Analysis

Experiences of Parents of Children with Cancer in the Diagnosis Process: A Qualitative Study

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