Unmet Needs of People with Severe Multiple Sclerosis and Their Carers: Qualitative Findings for a Home-Based Intervention

Abstract

BackgroundFew 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).ObjectiveTo 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.MethodData 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.ResultsBetween 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.ConclusionsUnmet 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.

Patient and caregiver involvement in the formulation of guideline questions: findings from the European Academy of Neurology guideline on palliative care of people with severe multiple sclerosis

“…The MS patients they cared for were of similar age (P = 0.39) and disease duration (v 2 = 3.2; P = 0.20) albeit more disabled (v 2 = 48.4; P < 0.001) compared to the patients who completed the survey. The median (interquartile range) survey completion time was 8 (5-10) min in patients and 8 (6)(7)(8)(9)(10)(11) min in caregivers (P = 0.07).…”

“…Based on a review of the literature [7][8][9][10][11] and on expert survey findings, the task force agreed on a set of 14 items ('questions'), which are reported in Table S3 (right column).…”

Impact of a Parent’s Neurodegenerative Disease and Care on the Daily Life of Children

“…Working in the home and giving care to a parent with a neurodegenerative disease is difficult [34]. Specific education about the disease and different ways to support communication is important [35,36].…”

Assessment of the Needs of People With Multiple Sclerosis in Khuzestan Province, 2015

“…The scores of patients' priority needs were high on EDSS scale with the rise in the dependency on the primary health care and rehabilitation. The interdisciplinary rehabilitation models, instead of multidisciplinary ones, are more common in Iran that help in meeting the priority needs of the MS patients to some extent [15].…”