Finding meaning despite anxiety over life and death in amyotrophic lateral sclerosis patients

Ozanne, Anneli; Graneheim, Ulla Hällgren; Strang, Susann

doi:10.1111/jocn.12071

Cited by 45 publications

(79 citation statements)

References 30 publications

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“…It would probably help them in coping with the situation and find meaning in life if they could talk about those kinds of feelings and obtain answers about possible misunderstandings both during the disease process and after the partner had passed away. As shown in this and other studies (see Olsson Ozanne et al, 2012;Ozanne et al, 2013), spouses and partners could find it difficult to talk with each other about their feelings and thoughts. Hence, although it might be preferable to provide individual support for spouses, it is also necessary to give spouses and patients joint support and help each to see the other's situation so that they can be there for each other.…”

Section: Discussionmentioning

confidence: 83%

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Struggling to find meaning in life among spouses of people with ALS

2014

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Meaning in life strengthened spouses' well-being and ability to find pleasure in a difficult situation. It also strengthened their will to live after the partner's death. Limitations and isolations were strong predictors of what could impair their well-being and the possibility of finding meaning after the partner's death. Spouses need individual support throughout the disease process and after the partner's death, to give them the strength to find meaning in life and prioritize what is important for them. Paying attention to what might prevent them from finding meaning could make it easier to help them in their situation. Providing joint support to the patient and spouse might also help them to see each other's situation, come together, and help each other.

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Section: Discussionmentioning

confidence: 83%

“…Previous studies have examined manageability among the spouse-patient pairs and finding meaning among patients (Olsson Ozanne et al, 2012;Ozanne et al, 2013). Our study was performed to reveal experiences of finding meaning among spouses of people living with ALS.…”

Section: Designmentioning

confidence: 97%

Struggling to find meaning in life among spouses of people with ALS

2014

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“…Emotional coping techniques may be particularly beneficial during the initial stages of adjusting to the onset of severe disability (Lule, et al, 2009) when people typically deal with significant anxiety, denial, depression, and internalized anger (Glover-Graf, Millington, & Marini, 2012). People with SSPI may also chronically suffer from anxiety (Grossman, et al, 2010; Ozanne, Graneheim, & Strang, 2013), depression (Grossman, et al, 2010), fatigue (Grossman, et al, 2010), and pain (Hirsh, Kratz, Engel, & Jensen, 2011; Vogtle, Malone, & Azuero, 2013). These are all areas that are known to be improved by MM in non-SSPI populations, as was cited in the previous paragraph.…”

Section: Introductionmentioning

confidence: 99%

Teaching mindfulness meditation to adults with severe speech and physical impairments: An exploratory study

Goodrich

Wahbeh

Mooney

et al. 2014

Neuropsychological Rehabilitation

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People with severe speech and physical impairments may benefit from mindfulness meditation training because it has the potential to enhance their ability to cope with anxiety, depression, and pain and improve their attentional capacity to use brain-computer interface systems. Seven adults with severe speech and physical impairments—defined as speech that is understood less than 25% of the time and/or severely reduced hand function for writing/typing—participated in this exploratory, uncontrolled intervention study. The objectives of this study were to describe the development and implementation of a six-week mindfulness meditation intervention and to identify feasible outcome measures in this population. The weekly intervention was delivered by an instructor in the participant's home, and participants were encouraged to practice daily using audio recordings. The objective adherence to home practice was 10.2 minutes per day. Exploratory outcome measures were an n-back working memory task, the Attention Process Training-II Attention Questionnaire, the Pittsburgh Sleep Quality Index, the Perceived Stress Scale, the Positive and Negative Affect Schedule, and a qualitative feedback survey. There were no statistically significant pre-post results in this small sample, yet administration of the measures proved feasible and qualitative reports were overall positive. Obstacles to teaching mindfulness meditation to persons with SSPI are reported, and solutions are proposed.

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“…Montel et al 35 found that anxiety and somatic disorders increased over time in their ALS population; the authors suspected both physical deterioration and fear of death as factors that exacerbated or caused anxiety in the patients they studied. Ozanne et al 36 noted that anxiety in their (ALS) population was related to fear of dying in distress (choking to death or gasping for breath). As with depression, anxiety is often a treatable illness.…”

Section: Symptom Management: Depression/anxietymentioning

confidence: 99%

Palliative care for patients in the USA with amyotrophic lateral sclerosis: current challenges

Houseman¹,

Kelley²

2015

NRR

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Amyotrophic lateral sclerosis (ALS) is a motor neuron disease that results in eventual paralysis of all voluntary muscles. Cognitive impairment may be a co-occurring condition with the ALS patient. Palliative care, which involves symptom management, is the most utilized treatment of choice. Managing the symptoms of ALS can be challenging. This paper provides experience-based facts on daily care provision in the USA and some practical guidelines.

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Finding meaning despite anxiety over life and death in amyotrophic lateral sclerosis patients

Cited by 45 publications

References 30 publications

Struggling to find meaning in life among spouses of people with ALS

Struggling to find meaning in life among spouses of people with ALS

Teaching mindfulness meditation to adults with severe speech and physical impairments: An exploratory study

Palliative care for patients in the USA with amyotrophic lateral sclerosis: current challenges

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