College of Nursing, Rady Faculty of Health Sciences, University of Manitoba, 89 Curry Place, Winnipeg, MB, R3T 2N2, Canada.
College of Rehabilitation Sciences, Department of Occupational Therapy, Rady Faculty of Health Sciences, University of Manitoba, R215-771 McDermot Avenue, Winnipeg, MB, R3E 0T6, Canada.
BMC Pediatr. 2024 Feb 2;24(1):93. doi: 10.1186/s12887-024-04567-8.
Although the number of children living with complex care needs (CCN) is increasing worldwide, there is limited data on the experience of fathers caring for children with CCN. This paper reports on findings specific to fathers' experiences of caring for their child with CCN and highlights recommendations provided for parents of children with CCN, service providers, and policymakers. The findings emerged from a larger study designed to examine how Canadian families of children with CCN participate in society.
We used the qualitative research approach of ethnography and arts-based methodologies (ecomaps and photovoice) as well as purposive and snowball sampling techniques. Four parents were engaged as advisors and twenty-nine fathers participated in interviews (all were married or in a relationship; age range of 28 to 55 years). In line with an ethnographic approach, data analysis involved several iterative steps including comparing data from the first, second, and third set of interviews and refining themes.
One overarching theme, striving to be there for the child with CCN, was identified. Five supporting themes further exemplified how fathers strived to be there for their child: 1) contributing to the parental team through various roles; 2) building accessibility through adaptation; 3) engaging in activities with the child; 4) expressing admiration and pride in their children; and 5) meaning making. Recommendations for parents included making and nurturing connections and asking for help while recommendations for healthcare and social service providers included communicating authentically with families and listening to parents. Fathers also indicated that leadership and funding for programs of families of children with CCN should be priorities for policymakers.
In addition to documenting fathers' active involvement in their child's care and development, our findings provide new insights into how fathers make participation in everyday life accessible and inclusive for their children. Study findings also point to 1) priority areas for policymakers (e.g., accessible physical environments); 2) factors that are critical for fostering collaborative care teams with fathers; and 3) the need for complex care teams in the adult health care system. Implications for those providing psychosocial support for these families are noted as well as knowledge gaps worthy of future exploration such as the role of diversity or intersectionality in fathering children with CCN.
尽管全球范围内有越来越多的儿童需要复杂的照顾，但关于父亲照顾有复杂照顾需求儿童的经验的数据却有限。本文报告了专门针对父亲照顾有复杂照顾需求儿童的经验的发现，并强调了为有复杂照顾需求儿童的父母、服务提供者和政策制定者提供的建议。这些发现来自于一项旨在研究加拿大有复杂照顾需求儿童的家庭如何参与社会的更大研究。
我们使用了定性研究方法，包括民族志和以艺术为基础的方法（生态图和摄影）以及目的性和滚雪球抽样技术。四名父母作为顾问参与其中，29 名父亲接受了采访（均已婚或有伴侣；年龄在 28 岁至 55 岁之间）。根据民族志方法，数据分析包括几个迭代步骤，包括比较第一、第二和第三组访谈的数据，并完善主题。
确定了一个总体主题，即为有复杂照顾需求的儿童努力提供支持。五个支持主题进一步举例说明了父亲如何努力为他们的孩子提供支持：1）通过各种角色为父母团队做出贡献；2）通过适应来提高可及性；3）与孩子一起参与活动；4）对孩子表示钦佩和自豪；5）赋予意义。对父母的建议包括建立和培养联系，并寻求帮助，而对医疗保健和社会服务提供者的建议包括与家庭进行真实的沟通，并倾听父母的意见。父亲们还表示，政策制定者应将为有复杂照顾需求的儿童的家庭提供领导力和资金作为优先事项。
除了记录父亲在孩子的照顾和发展中的积极参与外，我们的研究结果还提供了新的见解，说明父亲如何使日常生活对他们的孩子具有可及性和包容性。研究结果还指出了 1）政策制定者的优先事项（例如，无障碍的物理环境）；2）对于培养与父亲合作的照顾团队至关重要的因素；3）成人保健系统中复杂照顾团队的必要性。还提到了为这些家庭提供社会心理支持的意义，以及值得未来探索的知识空白，例如多样性或交叉性在照顾有复杂照顾需求儿童的父亲中的作用。
