Abstract

Objective: Research on the role of hope in coping with fatal Motor Neuron Disease including Amyotrophic Lateral Sclerosis (ALS) and Progressive Muscular Atrophy (PMA) is scarce. In this study we aimed to enhance our understanding of experienced hope in dyads diagnosed with Motor Neuron Disease (MND).
Methods: Eligible purposively sampled MND patients attending four large specialized MND care teams in The Netherlands were approached to participate in this study. Consenting patients invited an informal caregiver of their choice to participate in the interviews. The appointed caregivers all appeared to be Family Caregivers (FCs). Qualitative semi-structured interviews were conducted in dyads of 22 MND patients and 22 Family Caregivers (FC) and thematically analyzed.
Results: Most patients and their family caregiver (dyads) experienced hope and valued it as essential for continuing living with MND after the diagnosis. Three overarching themes emerged from the interviews: hope for more life years, living meaningful and a dignified death. Dyads reported a quick shift after diagnosis from hope for a cure to hope for a meaningful remaining time. Retaining hope during disease progression meant that patients actively re-appraised and revalued their life as a buffer against distress and despair. Hopefulness of the patient with MND was an important source of hope for all family caregivers.
Conclusion: Hope is a salient and dynamic concept that plays a central role in the process of coping with MND and its devastating consequences. In the process of finding and retaining hope, patients and FCs are challenged to actively search for their inner strength, evaluate and re-evaluate what is important to them, while facing severe physical deterioration and imminent death. Hope appears an essential emotion-regulating coping-mechanism and denotes a process that by redefining and pursuing attainable goals, positive emotions are generated.
Professionals need to be aware of the fact that both patients and FCs experience and value hope in the process of accepting and living with the consequences of MND. Hope does not imply denial of the medical reality where there is no cure, but rather signify a need for and motivation to make meaning of remaining time living with MND. Hope serves as an inner force and transcends through the course of the disease and its profound psychosocial challenges. It is imperative that health professionals understand and appreciate hope from the patients’ and caregivers’ perspective and offer assistance where possible in achieving what is meaningful. Discussing hope and offering guidance constitutes an essential part of multidisciplinary care for persons with MND and their caregivers throughout the illness process.

Keywords: Hope; Amyotrophic lateral sclerosis; Progressive muscular sclerosis; Motor neuron disease; Dyads; Caregivers; Qualitative research