Epub ahead of print:
Riazi et al. Quality of life in the care home: a qualitative study of the perspectives of residents with multiple sclerosis. Disabil Rehabil. 2012 Apr 13.
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). This study 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.
“It is a pity this study did not look at health resource utilization. I would be interested to know how much medical input care home residents require and whether or not this is correlated to QoL. Does active neurological intervention to prevent complications work better than dealing with medical crises as they arise?”
“The costs of care home utilization is not included in any NICE cost-effectiveness decisions regarding MS interventions. Therefore, the possibility that DMTs can prevent MSers from entering care homes and consuming large quantities of resources is of no interest to NICE.”