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"I wanna live and not think about the future" what place for advance care planning for people living with severe multiple sclerosis and their families? A qualitative study.
Koffman, Jonathan; Penfold, Clarissa; Cottrell, Laura; Farsides, Bobbie; Evans, Catherine J; Burman, Rachel; Nicholas, Richard; Ashford, Stephen; Silber, Eli.
  • Koffman J; Hull York Medical School, Wolfson Palliative Care Research Centre, Hull, United Kingdom.
  • Penfold C; King's College London, Cicely Saunders Institute, London, United Kingdom.
  • Cottrell L; Hull York Medical School, Wolfson Palliative Care Research Centre, Hull, United Kingdom.
  • Farsides B; Faculty of Nursing, Langara College, Vancouver, Canada.
  • Evans CJ; Brighton and Sussex Medical School, Brighton, United Kingdom.
  • Burman R; King's College London, Cicely Saunders Institute, London, United Kingdom.
  • Nicholas R; King's College Hospital NHS Foundation Trust, London, United Kingdom.
  • Ashford S; United Kingdom Multiple Sclerosis Tissue Bank, Burlington Danes, Imperial College London, London, United Kingdom.
  • Silber E; King's College London, Cicely Saunders Institute, London, United Kingdom.
PLoS One ; 17(5): e0265861, 2022.
Article in English | MEDLINE | ID: covidwho-1933213
ABSTRACT

BACKGROUND:

Little is known about how people with multiple sclerosis (MS) and their families comprehend advance care planning (ACP) and its relevance in their lives.

AIM:

To explore under what situations, with whom, how, and why do people with MS and their families engage in ACP.

METHODS:

We conducted a qualitative study comprising interviews with people living with MS and their families followed by an ethical discussion group with five health professionals representing specialties working with people affected by MS and their families. Twenty-seven people with MS and 17 family members were interviewed between June 2019 and March 2020. Interviews and the ethical discussion group were audio-recorded and transcribed verbatim. Data were analysed using the framework approach.

RESULTS:

Participants' narratives focused on three major themes (i) planning for an uncertain future; (ii) perceived obstacles to engaging in ACP that included uncertainty concerning MS disease progression, negative previous experiences of ACP discussions and prioritising symptom management over future planning; (iii) Preferences for engagement in ACP included a trusting relationship with a health professional and that information then be shared across services. Health professionals' accounts from the ethical discussion group departed from viewing ACP as a formal document to that of an ongoing process of seeking preferences and values. They voiced similar concerns to people with MS about uncertainty and when to initiate ACP-related discussions. Some shared concerns of their lack of confidence when having these discussions.

CONCLUSION:

These findings support the need for a whole system strategic approach where information about the potential benefits of ACP in all its forms can be shared with people with MS. Moreover, they highlight the need for health professionals to be skilled and trained in engaging in ACP discussions and where information is contemporaneously and seamlessly shared across services.
Subject(s)

Full text: Available Collection: International databases Database: MEDLINE Main subject: Advance Care Planning / Multiple Sclerosis Type of study: Qualitative research Limits: Humans Language: English Journal: PLoS One Journal subject: Science / Medicine Year: 2022 Document Type: Article Affiliation country: Journal.pone.0265861

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Full text: Available Collection: International databases Database: MEDLINE Main subject: Advance Care Planning / Multiple Sclerosis Type of study: Qualitative research Limits: Humans Language: English Journal: PLoS One Journal subject: Science / Medicine Year: 2022 Document Type: Article Affiliation country: Journal.pone.0265861