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Participant perspectives of a home-based palliative approach for people with severe multiple sclerosis: A qualitative study.

ABSTRACT: We performed a qualitative study to investigate the experiences of participants in a multicentre randomized controlled trial on a home-based palliative approach (HPA) for adults with severe multiple sclerosis (MS) and their caregivers. Our aim was to explore the strengths and challenges of the intervention, and circumstances that may have influenced its efficacy.Participants to the qualitative study were the patients, their caregivers, patient referring physicians, and the teams who delivered the HPA intervention. We performed semi-structured one-on-one interviews with 12 patients and 15 informal caregivers chosen using a maximum variation strategy, two focus group meetings with patient referring physicians (4 participants each), and one with the HPA teams (9 participants).From data analysis (framework method) 38 sub-categories emerged, which were grouped into 10 categories and 3 themes: 'expectations,' 'met and unmet needs', and 'barriers'. Intervention benefits were improved control of symptoms and reduced sense of isolation of the patient-caregiver dyads. Limitations were: factors related to experimental design (difficulty of dyads in identifying examiner and team roles, additional burden for caregivers); team issues (insufficient team building /supervision, competing priorities); limitations of the intervention itself (insufficient length, lack of rehabilitation input); and external factors (resource limitations, under-responsive services/professionals). The referring physician focus groups provided little experiential data.The HPA reduced patient symptoms and sense of isolation in patients and caregivers. The indirect role of the HPA teams, and insufficient length of the intervention were key limitations. The experimental design imposed additional burdens on the dyads. Key barriers were the paucity of available services, the demanding administrative procedures, and lack of networking facilities. These findings suggest that two major requirements are necessary for home palliative care to be effective in this patient population: HPA teams well-connected with MS rehabilitation services, and care delivered over the long-term, with variable intensity.Current Controlled Trials ISRCTN73082124 (Registered 19/06/2014).

SUBMITTER: Giovannetti AM

PROVIDER: S-EPMC6042757 | biostudies-other | 2018

REPOSITORIES: biostudies-other

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Participant perspectives of a home-based palliative approach for people with severe multiple sclerosis: A qualitative study.

Giovannetti Ambra Mara AM Borreani Claudia C Bianchi Elisabetta E Giordano Andrea A Cilia Sabina S Cipollari Susanna S Rossi Ilaria I Cavallaro Claudia C Torri Clerici Valentina V Rossetti Edoardo E Stefanelli Maria Consiglia MC Totis Amadio A Pappalardo Angelo A Occhipinti Gina G Confalonieri Paolo P Veronese Simone S Grasso Maria Grazia MG Patti Francesco F Zaratin Paola P Battaglia Mario Alberto MA Solari Alessandra A

PloS one 20180712 7

<h4>Background</h4>We performed a qualitative study to investigate the experiences of participants in a multicentre randomized controlled trial on a home-based palliative approach (HPA) for adults with severe multiple sclerosis (MS) and their caregivers. Our aim was to explore the strengths and challenges of the intervention, and circumstances that may have influenced its efficacy.<h4>Methods</h4>Participants to the qualitative study were the patients, their caregivers, patient referring physici ...[more]

PMID: 30001423

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Project description: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.

Project description:BACKGROUND:The work of specialized palliative care (SPC) teams is often challenged by substantial amounts of time spent driving to and from patients' homes and long distances between the patients and the hospitals. OBJECTIVE:Video consultations may be a solution for real-time SPC at home. The aim of this study was to explore the use of video consultations, experienced by patients and their relatives, as part of SPC at home. METHODS:This explorative and qualitative study included palliative care patients in different stages and relatives to use video consultations as a part of their SPC between October 2016 and March 2017. Data collection took place in the patients' homes and consisted of participant observations followed by semistructured interviews. Inclusion criteria consisted of patients with the need for SPC, aged more than 18 years, who agreed to participate, and relatives wanting to participate in the video consultations. Data were analyzed with Giorgi's descriptive phenomenological methodology. RESULTS:A number of patients (n=11) and relatives (n=3) were included and, in total, 86 video consultations were conducted. Patients participating varied in time from 1 month to 6 months, and the number of video consultations per patient varied from 3 to 18. The use of video consultations led to a situation where patients, despite life-threatening illnesses and technical difficulties, took an active role. In addition, relatives were able to join on equal terms, which increased active involvement. The patients had different opinions on when to initiate the use of video consultations in SPC; it was experienced as optional at the initiating stage as well as the final stage of illness. If the video consultations included multiple participants from the SPC team, the use of video consultations could be difficult to complete without interruptions. CONCLUSIONS:Video consultations in SPC for home-based patients are feasible and facilitate a strengthened involvement and communication between patients, relatives, and SPC team members.

Dataset Information

Participant perspectives of a home-based palliative approach for people with severe multiple sclerosis: A qualitative study.

Publications

Participant perspectives of a home-based palliative approach for people with severe multiple sclerosis: A qualitative study.

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