The family transition experience when living with childhood neuromuscular disease: A grounded theory study

Abstract

Aims Neuromuscular diseases are rare conditions that present with progressive muscular weakness. As affected children transition into adulthood, they become more physically dependent on their families for support. There is little evidence on the family transition experience, which this study explored to identify experiences, challenges, and strategies of coping. Design Informed by family systems theory, a constructivist grounded theory study was conducted (2014–2017). Methods Data were collected by one‐on‐one interviews with a purposive sample of affected Swiss individuals and their families from 2015 to 2016. Data analysis used coding, memo writing, theoretical sampling, and constant comparison techniques. Results The analysis of 31 interviews with 10 affected individuals and 21 family members resulted in an interpretive theory constituted of four categories: (a) living with physical dependence, while striving for independence; (b) balancing proximity; (c) conforming and challenging social standards and expectations; and (d) grieving for loss, while joining forces for life. Conclusion Family functioning and well‐being were threatened by recurring tension from stress, physical and emotional difficulties, strained relationships, and conflict. The families’ strategies of coping and adaptation and their relationships and communication shaped their transition experience. Impact Families that experience threats to their well‐being and functioning would benefit from: needs assessment and monitoring; planning of appropriate family interventions; support of family relationships and communication, effective coping, and mastery; and positive adaptation to change.

(How) Do We Theorize?

“…We identified the constructivist Grounded Theory study by Waldboth et al30 as one creating a new constellation of variables in the context of pediatric care. Their work led to a construct of 4 variables to go beyond description and generate an explanation of a process grounded in data concerning the family transition experience when living with progressive childhood neuromuscular disease.…”

“…The constructivist Grounded Theory study by Petry et al, 29 however, resulted in an explanatory model on prerequisites, attributes, and effects of a successful care arrangement in 24-hour home care. 29 We identified the constructivist Grounded Theory study by Waldboth et al 30 as one creating a new constellation of variables in the context of pediatric care. Their work led to a construct of 4 variables to go beyond description and generate an explanation of a process grounded in data concerning the family transition experience when living with progressive childhood neuromuscular disease.…”

Qualitative Research in Healthcare: Data Analysis

“…Furthermore, the above-described characteristics of GT widen the pathway of quantitative researchers to apply GT more than other qualitative research methods [ 43 ], which has resulted in its broader application in healthcare research. GT has been used to explore a wide range of research topics, such as asthma patients’ experiences of disease management [ 48 ], the experiences of cancer patients or their families [ 49 , 50 ], and the experiences of caregivers of patients with cognitive disorders and dementia [ 51 ].…”

Home-Based Care for Children with Serious Illness: Ecological Framework and Research Implications

“…Families caring for children with serious illness often shoulder the primary responsibility for arranging and coordinating the extensive healthcare, educational, and social services across the levels of the home-based care system [ 116 , 117 ], as described above. While well-coordinated care has been identified by families as an integral component of high-quality home-based care for children with serious illness [ 41 ], families often describe poorly coordinated services [ 81 , 90 , 116 , 117 ], leading to negative child and family outcomes [ 81 , 116 ], unplanned hospitalizations [ 116 ], and strained family relationships [ 116 , 117 ].…”