Gagulic Sandra, Bártolo Ana, Silva Teresa Reis, Penteado Raquel, Marques Alda
Centro de Investigação em Atividade Física, Saúde e Lazer (CIAFEL) da Faculdade de Desporto da Universidade do Porto (FADEUP), Porto, Portugal.
Insight: Piaget Research Center for Ecological Human Development, Instituto Piaget-ESS/Piaget, Viseu, Portugal.
Scand J Caring Sci. 2025 Sep;39(3):e70106. doi: 10.1111/scs.70106.
Cystic fibrosis imposes a significant treatment burden on children and their informal caregivers, who have to change their routines to carefully adhere to medication and exercise as treatment regimes. Although informal caregivers are known to be key players in the daily management of these children, their own voice is scarcely explored, often hindering personalisation of care. The main objective of the study was to map the multifactorial impact of cystic fibrosis, as well as identify barriers and facilitators perceived by parental caregivers in managing the disease in the paediatric age.
A qualitative exploratory study was conducted involving six fathers and 14 mothers of 15 children and adolescents (6-18 years; 40% male) diagnosed with cystic fibrosis. Semi-structured individual interviews were conducted. Data were analysed using inductive thematic analysis.
Four main themes emerged from the analysis: (1) perceived impact of the disease; (2) facilitators of disease management; (3) adherence to treatment; and (4) physical activity. Findings emphasised the emotional impact of the disease, especially when diagnosed at a later stage of development. Increased knowledge seemed to facilitate adaptation and daily management, as well as a normalisation of attitudes by parents. All parents recognised physical activity as an important part of treatment, although financial and logistical factors (e.g., reconciling schedules) were important barriers to adherence.
Our findings suggest that disease management and specifically adherence to treatment recommendations is impacted by early diagnosis, attitudes towards the disease, social support and financial constraints. Future interventions should focus on identifying the needs and supporting the whole family to cope with the demands of the disease, namely by improving knowledge about the benefits of different intervention approaches.
囊性纤维化给儿童及其非正式照料者带来了巨大的治疗负担，他们必须改变日常习惯，严格遵守药物治疗和锻炼等治疗方案。尽管已知非正式照料者是这些儿童日常管理的关键角色，但很少有人探究他们的心声，这往往阻碍了个性化护理。本研究的主要目的是梳理囊性纤维化的多因素影响，以及识别父母照料者在管理儿童期疾病时所感受到的障碍和促进因素。
开展了一项定性探索性研究，涉及15名被诊断为囊性纤维化的儿童和青少年（6 - 18岁；40%为男性）的6名父亲和14名母亲。进行了半结构化的个人访谈。使用归纳主题分析法对数据进行分析。
分析得出四个主要主题：（1）疾病的感知影响；（2）疾病管理的促进因素；（3）治疗依从性；（4）体育活动。研究结果强调了疾病的情感影响，尤其是在发育后期被诊断出时。知识的增加似乎有助于适应和日常管理，以及父母态度的正常化。所有父母都认识到体育活动是治疗的重要组成部分，尽管经济和后勤因素（如协调日程安排）是依从性的重要障碍。
我们的研究结果表明，疾病管理，特别是对治疗建议的依从性，受到早期诊断、对疾病的态度、社会支持和经济限制的影响。未来的干预措施应侧重于识别需求并支持整个家庭应对疾病的要求，即通过提高对不同干预方法益处的认识来实现。
