Navigating uncertainty and resilience: a framework for understanding caregivers’ experiences and support needs

PURPOSE: The number of children with chronic conditions is increasing, affecting a growing number of caregivers. Informal caregiving adversely impacts health, social contacts, and the economy, highlighting the importance of improved caregiver well-being. MATERIALS AND METHODS: Semi-structured interviews were conducted with caregivers identified through a patient database at a Swedish hospital. Using a phenomenological approach with a thematic analysis, we explored the experiences of caregivers of children with the example of the condition Legg-Calvé-Perthes disease. RESULTS: The caregivers were highly worried and feared the unknown. Every uncertainty was experienced as consuming. By gathering information, they tried to regain control. Lacking information and communication from health care professionals created frustration. Half of the caregivers described that it negatively affected their mental health. Counselors and physiotherapists became crucial by taking on a coordinative and holistic role. Despite hardships, most caregivers found meaning in life and adapted to the new reality. The disease often had no negative effects on career or finances, and sometimes improved family relationships. CONCLUSION: Numerous parallels with our findings are evident across a broader caregiver population, indicating similar support requirements regardless of disease. Our 'Care for Caregivers Framework' illustrates caregivers' experiences and highlights possible areas for future research.