Advance care planning in amyotrophic lateral sclerosis (ALS): study protocol for a qualitative longitudinal study with persons with ALS and their family carers

Abstract

IntroductionAmyotrophic lateral sclerosis (ALS) is an incurable motor neuron degenerative disease that has rapid progression and is associated with cognitive impairment. For people with ALS (pALS) and their family carers, advance care planning (ACP) is beneficial, as it can lead to feelings of control/relief and refusal of unwanted treatments. However, evidence concerning the experiences and preferences regarding ACP of pALS and their family carers, especially when their symptoms progress, is scarce. This article describes the protocol for a qualitative longitudinal study that aims to explore: (1) the experiences with ACP and the preferences for future care and treatment of pALS and their family carers and (2) how these experiences and preferences change over time.Methods and analysisA qualitative, longitudinal, multiperspective design. A total of eight to nine dyads (pALS and their family carers) will be recruited, and semistructured interviews administered every 3 months over a 9-month period. Qualitative longitudinal analysis involves content analysis via in-depth reading, followed by a two-step timeline method to describe changes in experiences and preferences within and across participants.Ethics and disseminationThis protocol has been approved by the central ethical committee of the University Hospital of Brussels, and local ethical committees of the other participating hospitals (B.U.N. B1432020000128). The results will be disseminated via the research group’s (endoflifecare.be) website, social media and newsletter and via presentations at national and international scientific conferences.

Experiences with advance care planning in amyotrophic lateral sclerosis: Qualitative longitudinal study with people with amyotrophic lateral sclerosis and their family carers

“…Detailed information about the various safeguards that were considered for this study can be found in the protocol paper. 23…”

“…Detailed information about the interview guides can be found in the protocol paper and the appendix of the protocol paper. 23 The timing of interviews was flexible, with short monthly phone calls used to assess if an earlier interview was needed due to sudden changes in advance care planning experiences, such as unexpected hospitalization. These phone calls were not audiotaped or analyzed.…”

Exploring amyotrophic lateral sclerosis patients’ experiences of psychological distress during the disease course in China: a qualitative study

“… 25–27 Healthcare professionals often approach ALS from the perspectives of clinical treatment efficacy, personalised prognosis, rehabilitation therapy and feasibility of care plans. 28–30 However, there is a lack of research into the psychological distress experienced by ALS patients throughout the disease process. This study addresses this gap by understanding the disease-related suffering experienced by ALS patients.…”

How to enhance advance care planning research?

“…A recent qualitative longitudinal interview study, with constructionism as the underlying epistemology, about advance care planning experiences in amyotrophic lateral sclerosis, revealed how advance care planning conversation occur over time between patients and family caregivers and which relational and transformative complexities arise during this dynamic process. 6 Realist designs, such as the critical realist review and synthesis by Spacey and Porter presented in this issue, also serves as an inspiring example to better understand the complexity of factors influencing engagement in advance care planning. Other approaches from the social science and humanities such as narrative, phenomenological or ethnographic research are currently underexplored in our field and might bring important insights next to what we have learned so far using more positivist and post-positivist research paradigms.…”

“…Recent studies on advance care planning in amyotrophic lateral sclerosis and multiple sclerosis for example showed that a complex interplay between various factors underpin engagement in advance care planning: patients’ and caregivers’ acceptance of the illness, how they identify themselves in a new role as patient or caregiver, people’s coping mechanisms, and the relational dynamics influence the uptake of advance care planning. 6,7 People with dementia and their families have also highlighted that advance care planning should not be framed as a merely medical process focused on end-of-life planning, but also a social and relational process which unfolds over time. 5 Therefore, we argue that future research could focus more on understanding how advance care planning processes are shaped within the complex context of social, emotional, and relational dynamics, and more effort could be made to unravel not only the communalities (what is the same across patients or families) but also the diversities and variations between people.…”