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

Claudia Borreani, Elisabetta Bianchi, Erika Pietrolongo, Maria Rossi, Sabina Cilia, Miranda Giuntoli, Andrea Giordano, Paolo Confalonieri, Alessandra Lugaresi, Francesco Patti, Maria Grazia Grasso, Laura Lopes De Carvalho, Lucia Palmisano, Paola Zaratin, Mario Alberto Battaglia, Alessandra Solari

Research output: Contribution to journalArticle

28 Citations (Scopus)

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.

Original languageEnglish
Article numbere109679
JournalPLoS One
Volume9
Issue number10
DOIs
Publication statusPublished - Oct 6 2014

Fingerprint

sclerosis
Caregivers
Multiple Sclerosis
Health
Chronic Progressive Multiple Sclerosis
Home Care Services
Palliative Care
Italy
health care workers
family day care
interviews
Personnel
Interviews
Loneliness
Access to Information
Group Processes
Qualitative Research
health policy
Health Policy
Focus Groups

ASJC Scopus subject areas

  • Agricultural and Biological Sciences(all)
  • Biochemistry, Genetics and Molecular Biology(all)
  • Medicine(all)

Cite this

Unmet needs of people with severe multiple sclerosis and their carers : Qualitative findings for a home-based intervention. / Borreani, Claudia; Bianchi, Elisabetta; Pietrolongo, Erika; Rossi, Maria; Cilia, Sabina; Giuntoli, Miranda; Giordano, Andrea; Confalonieri, Paolo; Lugaresi, Alessandra; Patti, Francesco; Grasso, Maria Grazia; De Carvalho, Laura Lopes; Palmisano, Lucia; Zaratin, Paola; Battaglia, Mario Alberto; Solari, Alessandra.

In: PLoS One, Vol. 9, No. 10, e109679, 06.10.2014.

Research output: Contribution to journalArticle

Borreani, C, Bianchi, E, Pietrolongo, E, Rossi, M, Cilia, S, Giuntoli, M, Giordano, A, Confalonieri, P, Lugaresi, A, Patti, F, Grasso, MG, De Carvalho, LL, Palmisano, L, Zaratin, P, Battaglia, MA & Solari, A 2014, 'Unmet needs of people with severe multiple sclerosis and their carers: Qualitative findings for a home-based intervention', PLoS One, vol. 9, no. 10, e109679. https://doi.org/10.1371/journal.pone.0109679
Borreani, Claudia ; Bianchi, Elisabetta ; Pietrolongo, Erika ; Rossi, Maria ; Cilia, Sabina ; Giuntoli, Miranda ; Giordano, Andrea ; Confalonieri, Paolo ; Lugaresi, Alessandra ; Patti, Francesco ; Grasso, Maria Grazia ; De Carvalho, Laura Lopes ; Palmisano, Lucia ; Zaratin, Paola ; Battaglia, Mario Alberto ; Solari, Alessandra. / Unmet needs of people with severe multiple sclerosis and their carers : Qualitative findings for a home-based intervention. In: PLoS One. 2014 ; Vol. 9, No. 10.
@article{9a7a5a47eea149e2a83308b4faefc578,
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.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.",
author = "Claudia Borreani and Elisabetta Bianchi and Erika Pietrolongo and Maria Rossi and Sabina Cilia and Miranda Giuntoli and Andrea Giordano and Paolo Confalonieri and Alessandra Lugaresi and Francesco Patti and Grasso, {Maria Grazia} and {De Carvalho}, {Laura Lopes} and Lucia Palmisano and Paola Zaratin and Battaglia, {Mario Alberto} and Alessandra Solari",
year = "2014",
month = "10",
day = "6",
doi = "10.1371/journal.pone.0109679",
language = "English",
volume = "9",
journal = "PLoS One",
issn = "1932-6203",
publisher = "Public Library of Science",
number = "10",

}

TY - JOUR

T1 - Unmet needs of people with severe multiple sclerosis and their carers

T2 - Qualitative findings for a home-based intervention

AU - Borreani, Claudia

AU - Bianchi, Elisabetta

AU - Pietrolongo, Erika

AU - Rossi, Maria

AU - Cilia, Sabina

AU - Giuntoli, Miranda

AU - Giordano, Andrea

AU - Confalonieri, Paolo

AU - Lugaresi, Alessandra

AU - Patti, Francesco

AU - Grasso, Maria Grazia

AU - De Carvalho, Laura Lopes

AU - Palmisano, Lucia

AU - Zaratin, Paola

AU - Battaglia, Mario Alberto

AU - Solari, Alessandra

PY - 2014/10/6

Y1 - 2014/10/6

N2 - 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.

AB - 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.

UR - http://www.scopus.com/inward/record.url?scp=84907705471&partnerID=8YFLogxK

UR - http://www.scopus.com/inward/citedby.url?scp=84907705471&partnerID=8YFLogxK

U2 - 10.1371/journal.pone.0109679

DO - 10.1371/journal.pone.0109679

M3 - Article

C2 - 25286321

AN - SCOPUS:84907705471

VL - 9

JO - PLoS One

JF - PLoS One

SN - 1932-6203

IS - 10

M1 - e109679

ER -