Delemere Emma, Gitonga Isaiah, Maguire Rebecca
Department of Psychology, Maynooth University Co., Kildare, Ireland.
Compr Child Adolesc Nurs. 2023 Dec;46(4):277-294. doi: 10.1080/24694193.2023.2229429. Epub 2023 Jul 6.
Caring for a child with cancer can place a number of burdens on families, however it is unclear the extent to which health-care professionals (HCPs) and other personnel supporting families are aware of these burdens. This study sought to explore the needs and challenges encountered by families impacted by pediatric cancer in Ireland from the perspectives of both parents and the personnel who support them. Twenty-one participants, comprising seven parents (one male, six females), and 14 supportive personnel (nine hospital-based volunteers and five HCPs) took part in in-depth semi-structured interviews via Microsoft Teams (December 2020 to April 2021) to obtain a perspective of the needs, challenges, and currently available support for families. A reflexive thematic approach to analysis was employed. The need to , a sense of and were perceived to be the primary challenges encountered by families. Participants reported a need for , across the health-care system and more . High levels of overlap across themes were found for parents and supportive personnel, particularly HCPs. Results highlight the significant challenges encountered by families impacted by pediatric cancer. Themes voiced by parents were frequently echoed by HCPs, suggesting this group is attuned to broader family needs. As such, they may be capable of providing insight where parent perspectives are unavailable. While further analysis including children's voices is needed, findings highlight key areas toward which support for families should be directed.
照顾患有癌症的儿童会给家庭带来诸多负担，然而，医疗保健专业人员（HCPs）和其他支持家庭的人员对这些负担的了解程度尚不清楚。本研究旨在从父母以及支持他们的人员的角度，探讨爱尔兰受小儿癌症影响的家庭所面临的需求和挑战。21名参与者，包括7名家长（1名男性，6名女性）和14名支持人员（9名医院志愿者和5名医疗保健专业人员）通过微软团队（2020年12月至2021年4月）参加了深入的半结构化访谈，以了解家庭的需求、挑战以及目前可获得的支持情况。采用了反思性主题分析方法。对 、 的需求和 被认为是家庭面临的主要挑战。参与者报告称，需要在整个医疗保健系统中提供 、 以及更多 。家长和支持人员，特别是医疗保健专业人员，在各主题之间发现了高度重叠的情况。结果凸显了受小儿癌症影响的家庭所面临的重大挑战。家长表达的主题经常得到医疗保健专业人员的呼应，这表明该群体关注更广泛的家庭需求。因此，在无法获取家长观点的情况下，他们可能能够提供见解。虽然需要进一步分析纳入儿童的声音，但研究结果突出了应针对家庭提供支持的关键领域。
