Unmet needs of people with severe multiple sclerosis and their carers: qualitative findings for a home-based intervention

Abstract

Background: Few data on services for people with severe multiple sclerosis (MS) are available. The Palliative Network for Severely Affected Adults with MS in Italy (PeNSAMI) developed a home palliative care program for MS patients and carers, preceded by a literature review and qualitative study (here reported).

Objective: To identify unmet needs of people with severe MS living at home by qualitative research involving key stakeholders, and theorize broad areas of intervention to meet those needs.

Method: Data were collected from: at least 10 personal interviews with adults with severe MS (primary/secondary progressive, EDSS≥8.0); three focus group meetings (FGs) of carers of people with severe MS; and two FGs of health professionals (HPs). Grounded theory guided the analysis of interview and FG transcripts, from which the areas of intervention were theorized.

Results: Between October 2012 and May 2013, 22 MS patients, 30 carers and 18 HPs participated. Forty-eight needs themes were identified, grouped into 14 categories and four domains. Seven, highly interdependent intervention areas were theorized. Patients had difficulties expressing needs; experiences of burden and loneliness were prominent, chiefly in dysfunctional, less affluent families, and among parent carers. Needs differed across Italy with requirements for information and access to services highest in the South. All participants voiced a strong need for qualified personnel and care coordination in day-to-day home care. Personal hygiene emerged as crucial, as did the need for a supportive network and preservation of patient/carer roles within family and community.

Conclusions: Unmet needs transcended medical issues and embraced organizational and psychosocial themes, as well as health policies. The high interdependence of the seven intervention areas theorized is in line with the multifaceted approach of palliative care. At variance with typical palliative contexts, coping with disability rather than end-of-life was a major concern of patients and carers.

Figure 1. Histogram of symptoms (n = 145) reported by the 22 people with severe multiple sclerosis during the personal interviews.

Blue bars identify symptoms of the Palliative Outcome Scale-Symptoms-Multiple Sclerosis . The “other symptoms” category includes: shortness of breath (n = 2), peripheral edema (n = 2), thermoregulation problems (n = 2), and loss of smell (n = 1). Stars identify symptoms (n = 48, 33%) pertaining to the perineal area.

Figure 2. Venn diagram showing the seven intervention areas (medical care, yellow; rehabilitation/retraining, green; psychosocial interventions, blue; HP skills, orange; domestic assistance, purple; administration, light blue; public health policy, grey) labeled at the border of each ellipse.

Each intervention area contains its related needs categories (in italics). The public health policy intervention area has a dashed border as it is not addressed in our palliative care program. HP is health professional.