The meaning of living with uncertainty for people with motor neurone disease

Harris, Denise; Jack, Kirsten; Wibberley, Christopher

doi:10.1111/jocn.14350

Cited by 15 publications

(30 citation statements)

References 36 publications

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“…Similar to patients coping with terminal chronic illnesses, like cancer, neurodegenerative disorders, and multiple morbidities, our study reported the older adults' capacity to overcome EL originated from their own capacity to regulate emotion and re-prioritize goals to concerns when living in the moment in recognition of that loneliness experience could not be changed [43][44][45]. In our study, participants held an adaptive attitude towards EL.…”

Section: Discussionsupporting

confidence: 54%

Overcoming existential loneliness: a cross cultural study

Chung

Olofsson

Wong

et al. 2019

Preprint

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Moving into a long-term care facility (LTCF) can alter the way older adults see themselves and reduce their ability to engage in meaningful experiences and roles. They experience a shrinkage in their social network when they move away from home, a reduction in the frequency of their social contacts and the number of people from whom they receive emotional support. These changes and losses can lead to feelings of loneliness. However, the loneliness these older adults experience may be more than having the difficulty with expressing the feelings of loneliness or the loss of social roles, as common examined in the loneliness literature. Rather, this loneliness stemmed from the intolerable emptiness and lack of meaningful existence attributed to all the losses they have experienced (i.e., existential loneliness (EL). The aim of this qualitative study was to describe the experience of EL in older adults from Eastern and Western cultures who were living in LTCFs and how they dealt with the experience. Methods: Open interviews were conducted with 13 Chinese and 9 Swedes living in the LTCF about the experience of EL. A qualitative study using Thorne’s (2004) interpretive description (ID) was conducted and data were analysed using thematic analysis. Results: The core theme “overcoming EL’ captures the participants’ experience of EL. It describes a combined process of “feeling EL” and “self-regulating”. The study affirms that EL, was triggered as a common human condition in our study when the Chinese in Hong Kong, China and Swedes in Malmo, Sweden faced with life boundaries and crisis such as losses, frailty and mortality. Conclusions: EL is a very stress-inducing human phenomenon. Our study demonstrates that EL experience affects the fundamental structure of the ‘self’ unfolded by the experience of loss of control, isolation and meaningless in life. However, being EL allows the older adults of these two ethnics groups reaping the benefits that a ‘clearer’ sense of self provides, ranging from spirit of contentment to decreased distress. Thus, early and clear counselling support addressing the searching and meaning ascribed to EL should facilitate overcoming and better coping with the experience.

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Section: Discussionsupporting

confidence: 54%

Overcoming existential loneliness: a cross cultural study

Chung

Olofsson

Wong

et al. 2019

Preprint

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“…Many negative reactions prevailed, including bewilderment, 19 , 20 , 23 , 27 denial 18 – 20 , 23 , 35 , 51 , 57 and a sense of loss and sadness. 8 , 23 , 37 , 57 At the extremes were people who became very distressed by their position and those who experienced suicidal thoughts: 19 , 20 , 23 , 37 , 39 …”

Section: Resultsmentioning

confidence: 99%

“…Some questioned what had caused the disease, although recognising there may be no clear cause: Ways of maintaining control included managing stress and protecting time for themselves, both as individuals and together. 21,47,49,57 Participants had varying attitudes to how they approached inevitable deterioration, with some wishing to plan ahead 8,20,22,28,29,34,35,39,40,48,54,56,57 and others preferring to live in the present and not consider the future. [22][23][24][25]28,31,[33][34][35]39,40,50,51,56,57 As the disease progressed, both patients and carers tried to find ways to counteract feelings of loss and uncertainty, and to find new meaning in their life: [21][22][23]25,29,35,37,47,49,50,56,57 Determination to do what I can for as long as I can, desire for independence [and a] resilient temperament.…”

Section: Maintaining Controlmentioning

confidence: 99%

“…Deterioration and its physical, emotional and social sequelae had a significant effect on the lives of both patients and carers. 8, The feelings of loss spanned the disease trajectory, with the cumulative losses (physical, emotional, social) most pronounced during the phase of acute deterioration:…”

Section: A Life Of Unremitting Loss and Uncertaintymentioning

confidence: 99%

“…5 The targeted focus of this review meant that wider palliative care needs, such as symptom management and family support, were not addressed. However, unique challenges specific to distinct stages of the disease trajectory have been described 7 , 8 and determining palliative care needs according to disease stage has rarely been explored in the literature. 9 …”

Section: Introductionmentioning

confidence: 99%

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The experiences of, and need for, palliative care for people with motor neurone disease and their informal caregivers: A qualitative systematic review

Flemming

Turner

Bolsher³

et al. 2020

Palliat Med

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Background: Despite being a terminal neurodegenerative disease, the role of palliative care is less recognised for motor neurone disease than for other life-limiting conditions. Understanding the experiences of, and need for, palliative care for patients and carers is key to configuring optimal policy and healthcare services. Aim: To explore the experiences of, and need for, palliative care of people with motor neurone disease and their informal carers across the disease trajectory. Design: A systematic review of qualitative research conducted using Thematic Synthesis – PROSPERO registration CRD42017075311. Data Sources: Four electronic databases were searched (MEDLINE, CINAHL, PsycINFO, Social Science Citation Index) using terms for motor neurone disease, amyotrophic lateral sclerosis, palliative care, and qualitative research, from inception to November 2018. Included papers were data extracted and assessed for quality. Results: A total of 41 papers were included, representing the experiences of 358 people with motor neurone disease and 369 caregivers. Analytical themes were developed detailing patients’ and carers’ experiences of living with motor neurone disease and of palliative care through its trajectory including response to diagnosis, maintaining control, decision-making during deterioration, engaging with professionals, planning for end-of-life care, bereavement. Conclusion: The review identified a considerable literature exploring the care needs of people with motor neurone disease and their carers; however, descriptions of palliative care were associated with the last days of life. Across the disease trajectory, clear points were identified where palliative care input could enhance patient and carer experience of the disease, particularly at times of significant physical change.

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Interpreting end-of-life experiences of the person with motor neurone disease

Harris

2021

Pall Supp Care

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The meaning of living with uncertainty for people with motor neurone disease

Cited by 15 publications

References 36 publications

Overcoming existential loneliness: a cross cultural study

Overcoming existential loneliness: a cross cultural study

The experiences of, and need for, palliative care for people with motor neurone disease and their informal caregivers: A qualitative systematic review

Interpreting end-of-life experiences of the person with motor neurone disease

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