An evaluation of the role of community care in meeting the needs of people with multiple sclerosis in Ireland

Abstract

People with MS (PwMS) can experience a number of diverse needs which may be met by community-based services such as those delivered by MS Ireland (MSI), where Community Workers (CWs) provide support to PwMS on an individualised basis. However, while such support may be critical in helping PwMS adapt and cope with the challenges of living with MS, there has been little evaluation of the outcomes and impacts of this service to date. This study aimed to explore the perceived effectiveness and impacts of community work from the perspectives of both PwMS and CWs. Using stakeholder engagement and public and patient involvement (PPI), two surveys were developed for (1) CWs, and (2) services users of MSI. A series of open and closed questions centred on the effectiveness of community work in meeting twelve distinct categories of needs taken from an adapted framework of rehabilitation and healthcare needs of PwMS. Both CWs and service users rated the extent to which these various needs were met through community work, as well as describing the mechanisms by which needs were met, and the challenges faced in meeting these needs. Separately, both groups described the perceived impacts of community work using open-text responses. Fifteen CWs and 367 PwMS, 269 (73%) of whom knew their CW, participated. Both groups rated community work positively in meeting the needs for information, emotional/psychological support and coordination of care, with lower perceived capacity for community work to meet needs for employment accommodations, caregiver support and homecare. Mann Whitney U tests did not find any significant difference between groups in the perceived capacity of community work to meet the various needs examined (p>.05). Core mechanisms by which CWs meet needs are by signposting to relevant services, listening, and facilitating peer support. Difficulty accessing external services was the primary challenge identified in meeting needs. Positive impacts of community work included the role that CWs play in fostering confidence and acceptance of MS, and in helping service users overcome the challenges of MS. Results suggest how CWs can help meet the needs of PwMS, while also highlighting the numerous positive impacts that community work has for this group. While it is clear that a number of unmet needs may remain due to a lack of access to other external services, this study shows how community-based services may play an important role in helping PwMS adapt to living with MS.