title: 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.
  
  
  METHODS
  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.
authors.affiliation: Unit of Psychology, Foundation IRCCS Istituto Nazionale per la Cura dei Tumori, Milan, Italy.
authors.forename: Claudia
authors.initials: C
authors.lastname: Borreani
authors.affiliation: Unit of Psychology, Foundation IRCCS Istituto Nazionale per la Cura dei Tumori, Milan, Italy.
authors.forename: Elisabetta
authors.initials: E
authors.lastname: Bianchi
authors.affiliation: Department of Neuroscience, Imaging and Clinical Sciences, University "G. d'Annunzio" of Chieti-Pescara, Chieti, Italy.
authors.forename: Erika
authors.initials: E
authors.lastname: Pietrolongo
authors.affiliation: Multiple Sclerosis Unit, Foundation IRCCS S. Lucia Rehabilitation Hospital, Rome, Italy.
authors.forename: Ilaria
authors.initials: I
authors.lastname: Rossi
authors.affiliation: Neurology Clinic, MS Center, University Hospital Policlinico Vittorio Emanuele, Catania, Italy.
authors.forename: Sabina
authors.initials: S
authors.lastname: Cilia
authors.affiliation: AISM Liguria Region Rehabilitation Service, Genoa, Italy.
authors.forename: Miranda
authors.initials: M
authors.lastname: Giuntoli
authors.affiliation: Unit of Neuroepidemiology, Foundation IRCCS Neurological Institute C. Besta, Milan, Italy.
authors.forename: Andrea
authors.initials: A
authors.lastname: Giordano
authors.affiliation: Unit of Neuroimmunology, Foundation IRCCS Neurological Institute C. Besta, Milan, Italy.
authors.forename: Paolo
authors.initials: P
authors.lastname: Confalonieri
authors.affiliation: Department of Neuroscience, Imaging and Clinical Sciences, University "G. d'Annunzio" of Chieti-Pescara, Chieti, Italy.
authors.forename: Alessandra
authors.initials: A
authors.lastname: Lugaresi
authors.affiliation: Neurology Clinic, MS Center, University Hospital Policlinico Vittorio Emanuele, Catania, Italy.
authors.forename: Francesco
authors.initials: F
authors.lastname: Patti
authors.affiliation: Multiple Sclerosis Unit, Foundation IRCCS S. Lucia Rehabilitation Hospital, Rome, Italy.
authors.forename: Maria Grazia
authors.initials: MG
authors.lastname: Grasso
authors.affiliation: AISM Liguria Region Rehabilitation Service, Genoa, Italy.
authors.forename: Laura Lopes
authors.initials: LL
authors.lastname: de Carvalho
authors.affiliation: Dept. of Therapeutic Research and Medicine Evaluation, Istituto Superiore di Sanità, Rome, Italy.
authors.forename: Lucia
authors.initials: L
authors.lastname: Palmisano
authors.affiliation: Scientific Research Department, Italian Multiple Sclerosis Foundation, Genoa, Italy.
authors.forename: Paola
authors.initials: P
authors.lastname: Zaratin
authors.affiliation: Scientific Research Department, Italian Multiple Sclerosis Foundation, Genoa, Italy.
authors.forename: Mario Alberto
authors.initials: MA
authors.lastname: Battaglia
authors.affiliation: Unit of Neuroepidemiology, Foundation IRCCS Neurological Institute C. Besta, Milan, Italy.
authors.forename: Alessandra
authors.initials: A
authors.lastname: Solari
mesh_terms: D000328:Adult; D000368:Aged; D000369:Aged, 80 and over; D017028:Caregivers / Q000523:psychology / Q000706:statistics & numerical data*; D005260:Female; D006699:Home Care Services / Q000706:statistics & numerical data*; D006801:Humans; D008297:Male; D008875:Middle Aged; D009103:Multiple Sclerosis / Q000523:psychology / Q000628:therapy*; D020380:Needs Assessment; D010166:Palliative Care / Q000523:psychology / Q000706:statistics & numerical data; D019529:Sexuality / Q000523:psychology; D055815:Young Adult