Quality of Life in Patients with Amyotrophic Lateral Sclerosis: Perceptions, Coping Resources, and Illness Characteristics

Nelson, Naomi; Trail, Marilyn; Van, John; Appel, Stanley H.; Lai, Eugene C.

doi:10.1089/109662103322144736

Cited by 63 publications

(48 citation statements)

References 35 publications

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“…Evidence exists that prayer/belief in God are significant factors in coping with increasing dependence, stress and anxiety (Nelson et al, 2003). For some a shift from 'self-enhancement' (power, achievement, hedonism) towards 'selftranscendence ' (benevolence, universalism) We set out to address this omission through a detailed exploration of spirituality and faith within written accounts of living with ALS/MND.…”

Section: Introductionmentioning

confidence: 99%

Spirituality and/or religious faith: A means for coping with the effects of amyotrophic lateral sclerosis/motor neuron disease?

O’Brien

Clark

2015

Pall Supp Care

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The notion of spirituality/religious belief is recognised internationally as a domain within end of life care and is important in patients' and carers' quality-of-life. When faced with incurable illness patients often become more philosophical about their life; many seek comfort in spiritual or religious philosophies. Our intention was to understand how personal spirituality and religious faith might help those living with ALS/MND to cope with their impending death. MethodsUnsolicited narratives (Internet and print-published) written by individuals diagnosed with the terminal condition ALS/MND were analysed thematically. Narratives from 161 individuals diagnosed with ALS/MND written over a period of 37 years from 1968-2005 were included. ResultsThe findings reveal that religious faith sustains and helps people to avoid despair; personal spirituality helps them make sense of what is happening to them. Significance of resultsThe use of personal narratives by people with ALS/MND has provided the vehicle for sharing their deepest spiritual and religious thoughts with others. The place of spirituality and religious faith within ALS/MND care should not be under estimated. Assessment of religious or spiritual needs should become a routine part of practice and is the responsibility of all members of the multidisciplinary team. KeywordsSpirituality, religious faith, motor neuron disease/amyotrophic lateral sclerosis, written narratives, coping INTRODUCTION:Motor neuron disease (MND), also known as amyotrophic lateral sclerosis (ALS) is a terminal neurodegenerative condition, often following a rapidly-progressive course leading to death 3-5 years from onset (Wood-Allum & Shaw, 2010). Management focuses on relieving distressing symptoms, but clear limitations exist as psychosocial effects frequently compound physical symptoms. When faced with a terminal illness, like ALS/MND, there is an inclination to question the meaning of life and death (Young & McNicoll, 1998;Oliver 2002;Grant et al., 2004); thoughts turn towards spirituality and faith for comfort and consolation (Oliver 2002); the importance of religion and spirituality in improving quality of life and decision making as death approaches is acknowledged (Delgado-Guay 2014).Spirituality is a domain of supportive and palliative care in national policies such as the UK End-of-Life Care Programme (DH 2008), quality-of-life (QOL) measures (WHO 1998), and ALS/MND-specific care recommendations (Mitsumoto et al., 2005). As a concept, spirituality does raise some issues for researchers and commentators. Some identify a 'spiritual turn' in palliative care where perceptions of patients' needs have come to focus on privatised and selfdefined meaning structures. Within clinical care this has involved a re-orientation away from explicitly religious engagement with patients and families towards acknowledgement of the wider spiritual concerns of users of palliative care services. In practice it can be difficult to categorise as 'religious' or 'spiritual' patients' concerns relating ...

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Section: Introductionmentioning

confidence: 99%

Spirituality and/or religious faith: A means for coping with the effects of amyotrophic lateral sclerosis/motor neuron disease?

O’Brien

Clark

2015

Pall Supp Care

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“…The characteristics and degree of psychological health that were part of a person's personality and life circumstances before a diagnosis with ALS are likely to carry over into his or her life after diagnosis and likewise for caregivers [16]. For example, reports indicate that individual differences in optimism, flexibility, humor, and spirituality are important in predicting QOL for people with ALS, and these are likely to carry over from the premorbid period [17][18][19][20]. Likewise, social relationships established before onset of the disease may provide a resource that enhances QOL.…”

Section: Introductionmentioning

confidence: 99%

The Dynamics of Quality of Life in ALS Patients and Caregivers

et al. 2009

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“…Mitigating stress and coping becomes easier when engaging in physical activity 20, Forrest (while able) and maintaining contact with community. Expectedly, as with other research findings, those with more severe disease progression in the negative quality of life group (N-QoL) were more likely to experience increased sadness, anger, and frustration (Nelson et al, 2003). If N-QoL persists, individuals with ALS, their family, and their caregivers report a significant increase in the level of anxiety they feel towards the future; this warrants a higher necessity for reliance on caregivers and family sooner, in comparison to those with P-QoL.…”

Section: Illness Beliefssupporting

confidence: 75%

Investigating the Psychological Effects Associated with Motor Neuron Degeneration in Persons Diagnosed with ALS

Forrest¹

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Quality of Life in Patients with Amyotrophic Lateral Sclerosis: Perceptions, Coping Resources, and Illness Characteristics

Cited by 63 publications

References 35 publications

Spirituality and/or religious faith: A means for coping with the effects of amyotrophic lateral sclerosis/motor neuron disease?

Spirituality and/or religious faith: A means for coping with the effects of amyotrophic lateral sclerosis/motor neuron disease?

The Dynamics of Quality of Life in ALS Patients and Caregivers

Investigating the Psychological Effects Associated with Motor Neuron Degeneration in Persons Diagnosed with ALS

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