Family perspectives on independent living for adults with cerebral palsy: barriers, support needs, and quality of life

TL;DR

This study explores how families of adults with cerebral palsy view and experience independent living, highlighting barriers and the need for better support systems.

Contribution

The study provides new insights into family perspectives on independent living for adults with cerebral palsy, emphasizing structural barriers and support needs.

Findings

Independence is understood in diverse ways, including rights-based and functional perspectives.

Support systems are critical but hindered by accessibility, bureaucracy, and fragmented services.

Family caregiving involves significant personal and emotional costs, impacting well-being.

Abstract

Independent living is recognized as a fundamental right under Article 19 of the Convention on the Rights of Persons with Disabilities. However, for many adults with cerebral palsy (CP) exercising this right remains challenging. Many adults with CP continue to rely on family caregivers or institutional arrangements, with consequences for autonomy and quality of life. Clinical complexity and structural barriers place families in a central position in shaping adult life trajectories. This study aimed to explore family caregivers’ understandings of independent living, the barriers they encounter, and the supports they identify as necessary to promote quality of life for adults with CP and their families.

An interpretive qualitative study was conducted with 165 family caregivers of adults with CP across four Spanish regions (Andalusia, Aragon, Castile and Leon, and Galicia). Interviews explored meanings attributed to independent living, perceived feasibility, support needs, caregiving experiences, and well-being. Data were analyzed using inductive thematic analysis within a reflexive framework.

Four main themes were identified: (1) Independence was understood heterogeneously, ranging from rights-based conceptions centered on dignity, choice, and control to more restrictive views equating independence with functional self-sufficiency, often perceived as unattainable under high support needs; (2) Supports emerged as a decisive enabling condition, with families emphasizing the need for intensive, continuous, and coordinated assistance while reporting persistent barriers related to accessibility, bureaucracy, and service fragmentation; (3) Family caregiving, was described as a moral obligation involving substantial personal, social, and emotional costs. And (4) Well-being was framed as a central priority, encompassing health, safety, emotional stability, and social participation, while revealing tensions between protection and autonomy.

The findings suggest that independent living for adults with CP is constrained less by individual attitudes than by structural, organizational, and relational conditions. Families play a pivotal role in sustaining autonomy, often at considerable personal cost, which may in turn limit both caregiver well-being and the autonomy of the person with CP. Strengthening rights-based, personalized, and adequately resourced support systems, together with sustained training and emotional support for families, is essential to advance independent living and inclusive community participation for adults with CP.