Melchiors Leslie, Geertz Wiebke, Inhestern Laura
Department of Medical Psychology, University Medical Center Hamburg-Eppendorf, Hamburg, Germany.
Clinical Psychology, Helmut-Schmidt-University/University of the Federal Armed Forces, Hamburg, Germany.
Front Psychol. 2022 Feb 24;13:769298. doi: 10.3389/fpsyg.2022.769298. eCollection 2022.
Parents affected by cancer are confronted with challenges such as communicating with their children about the disease and dealing with changes in their parental role. Providing appropriate information could support affected parents and their children. Still, high-quality and information booklets are rare. Therefore, we developed an information booklet for affected families. The study aims are: (1) investigating the acceptability and usability of the information booklet, (2) determining parental information needs, and (3) collating suggestions for implementation. Finally, we adapted the booklet according to the findings.
We interviewed five experts in psychosocial care of parental cancer and nine affected parents using a semi-structured interview guideline. Participants received the developed booklet after giving the consent to participate. Interviews on acceptability and usability of the booklet and information needs were conducted about 1 week after receiving the booklet. The interviews were analyzed using structuring content analysis.
(1) Experts and parents reported that the information booklet addresses the experiences of affected families and that the content combination makes it useful in an unprecedented way indicating both acceptance and usability. (2) Following dimensions were identified as information needs: (a) communication, (b) support offers, (c) children's disease understanding and needs, (d) organization of family life, (e) competence in parenting, and (f) sources of additional information material. (3) The booklet should be handed out personally by, e.g., healthcare professionals and might be accompanied by a personal counseling. Minor adaptations on language and content were conducted based on the findings.
Indicated acceptance and usability of the developed information booklet for parents with cancer suggest a low-threshold, basic support for affected families and health professionals. The diverse parental information needs are covered. The long-term effects of the booklet, e.g., on the use of psychosocial support offers, parental self-efficacy and psychological distress will be quantitatively investigated.
患癌父母面临诸多挑战，比如与子女谈论病情以及应对自身父母角色的变化。提供恰当的信息有助于这些受影响的父母及其子女。然而，高质量的信息手册却很罕见。因此，我们为受影响的家庭编写了一本信息手册。本研究的目的是：（1）调查信息手册的可接受性和可用性；（2）确定父母的信息需求；（3）整理实施建议。最后，我们根据研究结果对手册进行了调整。
我们使用半结构化访谈指南，采访了五位父母癌症心理社会护理方面的专家和九位受影响的父母。参与者在同意参与后收到了编写好的手册。在收到手册约一周后，就手册的可接受性、可用性以及信息需求进行了访谈。采用结构化内容分析法对访谈进行分析。
（1）专家和父母表示，信息手册涉及了受影响家庭的经历，内容组合使其以前所未有的方式变得有用，显示出可接受性和可用性。（2）确定了以下几个方面的信息需求：（a）沟通；（b）支持服务；（c）孩子对疾病的理解和需求；（d）家庭生活的安排；（e）育儿能力；（f）额外信息材料的来源。（3）手册应由医疗保健专业人员等亲自发放，可能还需提供个人咨询服务。根据研究结果，对手册的语言和内容进行了细微调整。
已表明所编写的癌症患者父母信息手册具有可接受性和可用性，这为受影响的家庭和健康专业人员提供了低门槛的基础支持。涵盖了父母多样化的信息需求。将对手册的长期效果，例如对心理社会支持服务的使用、父母的自我效能感和心理困扰进行定量研究。
