Ageing with neuromuscular disease: Implications for a lifeworld-led care through a humanising approach

OBJECTIVES: To understand the care and support needs in ageing with neuromuscular disease from a patient-user perspective.

BACKGROUND: The term neuromuscular disease covers several chronic hereditary or acquired disease subtypes. In the developed countries, advances in symptoms management, technical advancements and rehabilitation initiatives have resulted in increased life expectancy for some subtypes. Life with neuromuscular disease is thus likely to continue into adulthood and old age. However, knowledge of the care and support needs of patients ageing with neuromuscular disease remains sparse.

DESIGN: Adopting a user-participatory approach embedded in a phenomenological hermeneutic tradition, we conducted two user-group discussions focusing on care and support needs in people ageing with neuromuscular disease. Twenty-five users with neuromuscular disease participated in the group discussions. Data were analysed using a three-stepped analysis method inspired by the French Philosopher Paul Ricoeur. In the analysis process, dialectical movements between a surface interpretation and an in-depth understanding occur. The COREQ checklist was used to report the study.

RESULTS: Two themes were identified; 'Changes in the sheltering relationships of life require preparation' and 'Ageing introduces a dichotomy between circumstantial normalcy and minority groupness'. An understanding of care and support needs in life with neuromuscular disease was reached revealing a need for a lifeworld-led approach.

CONCLUSION: Persons ageing with neuromuscular disease crave a fusion of disease- and age-led care and support. This fusion may be achieved through the introduction of a lifeworld-led approach to care and support.

RELEVANCE FOR CLINICAL PRACTICE: Unmet care and support needs in people ageing with neuromuscular disease may result in patients experiencing fear and concern about their life situation. Healthcare professionals may play a crucial role in creating coherent lives for these persons if they understand the approach proposed herein to uncover the care and support needs in people ageing with neuromuscular disease.