Quality of life in the care home: a qualitative study of the perspectives of residents with multiple sclerosis

Abstract

Purpose: Care home residents with multiple sclerosis (MS) are more physically dependent than the average residents. However, little is known about their quality of life (QoL). We investigated the experiences of residents with MS using qualitative research methods and developed a conceptual model of QoL. Methods: Twenty-one people with MS (age range 43–80 years) residing in a range of care homes were interviewed. The interviews were transcribed verbatim and analyzed using the constant comparative method. Results: Four core model domains identified were as follows: (i) What the care home means to the residents, (ii) Self, (iii) Environmentand (iv) Relationships. Some residents reported that care homes can relieve the burden on family, address specific environmental issues regarding safety and act as a form of social support. However, some reported isolation and difficulties adjusting to life in the care home. Having access to rehabilitation strengthened the feelings of independence within the care home. Conclusions: QoL is a broad, multidimensional construct for residents with MS. QoL measures for residents with MS should incorporate broad domains, including environmental factors. The conceptual model highlighted several areas for improving QoL of residents with MS, including more involvement of family members, encouraging independence by providing access to rehabilitation and providing support in the transition process.

Implications for Rehabilitation

• Quality of life for people with multiple sclerosis in care homes is a multidimensional construct.

• Participants in this qualitative study differed in whether they were able to have access to rehabilitation in the care home.

• For those that did have access, this appeared to enhance their feelings of maintaining some degree of independence in the care home.

• This study demonstrated that rehabilitation, such as physiotherapy, is greatly valued by care home residents with disabilities and has an impact on their quality of life.

Keywords::

• Care homes
• care home residents
• multiple sclerosis
• qualitative research
• quality of life

Acknowledgments

The authors are very grateful for the assistance of the residents, managers, and staff of the care homes involved in this study. We thank Ms. Stephanie Cheng for her assistance with transcribing the interviews, and Ed Holloway and Kailly Woodroffe from the MS Society with assistance with recruiting care homes.

Declaration of Interest: This work was supported by a grant from the MS Society, UK [Grant ref: 905/08].