Exploring What Motivates Parents of Children Living With Medical Complexity to Participate in Research

IF 1.8 4区医学 Q2 PEDIATRICS Child Care Health and Development Pub Date : 2024-09-19 DOI:10.1111/cch.13331

Laesa Kim, Anne-Mette Hermansen, Karen Cook, Harold Siden

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Abstract

Background

The study aimed to understand the experience of and identify the motivations for parents participating in health research for their children with medical complexity (CMC). Patient-oriented research strategies are increasingly important in health research to ensure that the voices of patients and parents help shape and direct research programmes. To bring a family-centred and patient-oriented focus to our research and objectives, we asked parents about their experiences when they participated in healthcare research related to their child with CMC.

Methods

A parent partner, who also has a CMC, interviewed 12 parents (11 mothers and 1 father) of children living with medical complexity to understand their motivations to participate in healthcare research for their child. The parent partner conducted and transcribed the interviews and led our data analysis. Interpretive phenomenological analysis (IPA) was used to inform our data coding and analytic process.

Results

Parents described numerous reasons for their participation in research about their children. These motivations landed within four main themes: feeling helpless and hopeful, child-centred motivation, being part of something good and forming a relationship with the research team. In addition to these themes, parents highlighted factors that influenced their ability or desire to participate, such as time, capacity and the level of invasiveness for their child. Ultimately, the reflections by parents emphasized their unique lives in caring for their CMC and the need to integrate their lived experiences with the research they engage in.

Conclusion

This study offers important insights for healthcare teams who want to engage parents of CMC to participate in research. Understanding parents' motivation to participate in research can help researchers create richer engagement and more meaningful experiences for themselves and their participants, thereby bolstering research programmes.

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探究有复杂病情儿童的家长参与研究的动机

研究背景该研究旨在了解家长参与复杂病症儿童（CMC）健康研究的经历，并确定家长参与研究的动机。以患者为导向的研究策略在健康研究中越来越重要，以确保患者和家长的声音有助于制定和指导研究计划。为了使我们的研究和目标以家庭为中心、以患者为导向，我们询问了家长在参与与患有复杂性内科疾病儿童相关的医疗保健研究时的经历。研究方法由一位同样患有儿童疾病综合症的家长伴侣对 12 位患有儿童疾病综合症的家长（11 位母亲和 1 位父亲）进行了访谈，以了解他们参与儿童医疗保健研究的动机。这位家长伙伴主持并记录了访谈内容，并领导了我们的数据分析工作。我们在数据编码和分析过程中使用了解释现象学分析（IPA）。结果家长描述了他们参与有关其子女研究的众多原因。这些动机主要有四个主题：感到无助和充满希望、以儿童为中心的动机、成为美好事物的一部分以及与研究团队建立关系。除了这些主题外，家长们还强调了影响他们参与能力或意愿的因素，如时间、能力和对孩子的侵犯程度。最后，家长们的思考强调了他们在照顾儿童疾病管理中心的独特生活，以及将他们的生活经验与他们所参与的研究相结合的必要性。结论本研究为希望让儿童疾病管理中心的家长参与研究的医疗团队提供了重要启示。了解父母参与研究的动机有助于研究人员为自己和参与者创造更丰富的参与和更有意义的体验，从而加强研究计划。

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来源期刊

Child Care Health and Development 医学-小儿科

CiteScore

3.40

自引率

5.30%

发文量

136

审稿时长

4-8 weeks

期刊介绍： Child: care, health and development is an international, peer-reviewed journal which publishes papers dealing with all aspects of the health and development of children and young people. We aim to attract quantitative and qualitative research papers relevant to people from all disciplines working in child health. We welcome studies which examine the effects of social and environmental factors on health and development as well as those dealing with clinical issues, the organization of services and health policy. We particularly encourage the submission of studies related to those who are disadvantaged by physical, developmental, emotional and social problems. The journal also aims to collate important research findings and to provide a forum for discussion of global child health issues.