Letter to the Editor: What Kind of Support Do <scp>SMA</scp> Families Need?—Reflections Based on Caregiving Roles

We read with great interest the article by González-Agüero et al. (2025), published in the Journal of Advanced Nursing, titled ‘The Illness Narratives of Children and Young People with Spinal Muscular Atrophy: A Scoping Review’. This study is the first to systematically review the illness experiences of children and young people with Spinal Muscular Atrophy (SMA) from a narrative perspective. It particularly reveals important findings such as parents as the main storytellers, the difficulties in accessing medical treatment, information and healthcare coverage, as well as the right to health issues, providing a valuable perspective for understanding the life course of this rare disease. Guided by the PAGER framework, the study clearly indicates that families are forced to assume multiple roles during the diagnosis and treatment process—including medical navigators, insurance coordinators, information managers and continuous caregivers—and fall into a typical ‘battle’ narrative. We believe that these phenomena point to a deeper theoretical core: the ‘role overload’ of caregivers. According to Role Theory (Biddle 1986), when an individual undertakes an excessive number of roles with conflicting expectations that exceed their physical and mental resources, it will inevitably lead to heightened stress and depletion of agency. This process ultimately drives families from an initial state of searching for answers at the onset of the illness to gradually sliding into a ‘battle’ against the healthcare system and social environment, which essentially represents a passive response and a helpless choice made by families under the pressure of role overload. To address the dilemma revealed in the original article, we propose a support system centered on role restructuring. This system aims to help families transition from a passive state of ‘overload’ to a more agentic state of ‘management’ by clarifying responsibility divisions and providing structured support. It specifically includes the following three supportive dimensions: First, establish full-time and trained SMA care coordinators who serve as the point of contact for families and systematically take on the ‘navigator’ role that families are forced to fulfill in the original article. Their responsibilities include coordinating multidisciplinary diagnosis and treatment, managing referral processes, assisting with insurance navigation and providing continuous follow-up of care plans. This measure can directly reduce the burden on families of navigating the fragmented healthcare system alone. Second, build an authoritative and integrated digital support platform for SMA to achieve reliable empowerment of the ‘information role’. The platform needs to integrate disease knowledge, treatment guidelines, medical insurance policies and charitable resources. Its purpose is to formalize the informal informational support occurring on social media, thereby reducing the risk of misinformation. Finally, we highly recognize the value of spontaneous peer support among ‘veteran mothers’ mentioned in the article—their shared practical experiences provide crucial support for newly diagnosed families. However, scattered online peer support carries the risk of information bias. Therefore, healthcare institutions should systematically cultivate peer support groups led by experienced caregivers, transforming individual experiences into authoritative collective resources that retain emotional resonance while complementing shortcomings through professional support. This is significant for enhancing the families' own agency and sense of control, thereby helping them shift from an isolated victim narrative towards a manager identity characterized by efficacy and advocacy capacity. In addition, the article mentions communication barriers between healthcare providers and patients/caregivers, including caregivers often feeling insufficient information provision and a lack of empathy from healthcare providers, leading to a sense of loneliness when advocating for their rights. This suggests the need to strengthen the empathy and rights coordination awareness of healthcare services. Therefore, we recommend integrating empathy training into the continuing education of healthcare professionals, improving their empathic ability through case simulations and narrative listening training. At the same time, clarifying the role of healthcare professionals as collaborators in health rights advocacy, proactively providing families with information on their entitled policy benefits and assistance programs, and assisting in connecting with patient support organisations to reduce families' sense of helplessness and lonely battle during the rights advocacy process. In conclusion, we highly commend González-Agüero et al. for their innovative research. This study not only provides a crucial perspective for understanding the life trajectories of families affected by SMA, but also profoundly reveals the common challenges faced by most families dealing with rare diseases. We sincerely hope that the support system proposed based on Role Theory will inspire the academic community to conduct deeper and more systematic discussions on the worthy issue of support for SMA families. The author has nothing to report. The author declares no conflicts of interest. The author has nothing to report.