“Walking a tightrope”: A grounded theory approach to informal caregiving for amyotrophic lateral sclerosis

Poppe, Christopher; Verwey, Martine; Wangmo, Tenzin

doi:10.1111/hsc.13625

Cited by 3 publications

(6 citation statements)

References 48 publications

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“…Thematic categories were used to identify recurring findings. Caregiver and patient well-being, as well as managing caregiving demands, was addressed in all studies, whereas 6 studies also addressed system barriers faced by patients and their caregivers 11-14,17,18,22,23 …”

Section: Resultsmentioning

confidence: 99%

“…Another recurrent construct addressed in the literature was satisfaction with care received and the benefits of specialized palliative care (ie, neuropalliative care). Those who were able to maintain a positive relationship with increased caregiving demands (benefit finding) as disease progressed were the same caregivers who were able to access supportive care services 11,14,23 …”

Section: Resultsmentioning

confidence: 99%

“…Caregiver and patient well-being, as well as managing caregiving demands, was addressed in all studies, whereas 6 studies also addressed system barriers faced by patients and their caregivers. [11][12][13][14]17,18,22,23 Caregiver and Patient Well-being A reciprocal relationship was found between caregiver and patient well-being. As found in the studies that used quantitative analysis, caregiving had a major impact on both physical and mental health.…”

Section: Symptom Severity Domainmentioning

confidence: 97%

“…Six studies explored palliative care needs, [12][13][14][15][16][17] 3 examined caregiver experience, 11,12,18 2 evaluated the physiological and psychological impact of caregiving, 19,20 and 2 studies applied theoretical understanding to the caregiver and patient relationship. 2,21 Of 13 studies, 7 included only caregiver outcomes, [11][12][13]17,[21][22][23] whereas the remaining 6 included both patients and caregivers' outcomes. [14][15][16][18][19][20] Sample sizes ranged from small to medium (7-69 participants), except for 1 Australian study that conducted a national survey of 503 caregivers and 373 patients.…”

Section: Study Characteristics Setting Purpose Design and Sample Char...mentioning

confidence: 99%

“…Those who were able to maintain a positive relationship with increased caregiving demands (benefit finding) as disease progressed were the same caregivers who were able to access supportive care services. 11,14,23…”

Section: Symptom Severity Domainmentioning

confidence: 99%

See 4 more Smart Citations

The Impact of Rapidly Progressing Neurodegenerative Disorders on Caregivers

Mossa,

Mayahara,

Emezue

et al. 2023

J Hosp Palliat Nurs

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Neurodegenerative disorders affect over 6 million people in the United States. A subset of these patients experiences symptoms that progress rapidly, along with a 5- to 10-year life expectancy (amyotrophic lateral sclerosis). This subgroup often becomes dependent on family caregivers. Managing care demands at the end of life that are brought on by rapid disease progression has a negative impact on caregiver quality of life. The purpose of this integrative review is to highlight the gaps in the existing body of research on the effect of neuropalliative care on quality of life of this caregiver population. A total of 13 articles met inclusion criteria and were selected for review. The most frequently occurring themes and findings in the literature shed light on neuropalliative care and provided some insight into both caregivers and patients' perspective at the end of life. What sets this population apart from caregivers and patients of other terminal diseases is the nature of disease progression and the rapid life adjustments that come along with it. Integration of neuropalliative has shown to provide additional support for caregivers and patients; however, it remains underused. To promote equitable access to these services, it is necessary to address several structural barriers.

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Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Section: Symptom Severity Domainmentioning

confidence: 97%

Section: Study Characteristics Setting Purpose Design and Sample Char...mentioning

confidence: 99%

Section: Symptom Severity Domainmentioning

confidence: 99%

See 3 more Smart Citations

The Impact of Rapidly Progressing Neurodegenerative Disorders on Caregivers

Mossa,

Mayahara,

Emezue

et al. 2023

J Hosp Palliat Nurs

View full text Add to dashboard Cite

show abstract

Receiving and adjusting to a diagnosis of ALS: A qualitative study with informal caregivers

Iseli,

Poppe,

Wangmo

2024

Pall Supp Care

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ObjectivesDiagnosis of amyotrophic lateral sclerosis (ALS) takes more than 1year from detection of first symptoms. The paper seeks to understand the ALS diagnostic process and adjustment from the perspective of informal caregivers.MethodsThe data stems from an interview study with 9 current and 13 bereaved informal caregivers of people with ALS in Switzerland. The interviews were analyzed using thematic analysis.ResultsWe identified 3 key themes pertaining to ALS diagnosis. In the first theme, we present the close involvement of informal caregivers in the “diagnosis journey.” Highlighted within this theme is the important role they play, which ultimately leads to diagnosis of ALS avoiding further delays. Second, we relay their perceptions on “diagnosis communication pitfalls” where they underlined empathy and planning from the part of medical professional, while communicating the terminal diagnosis of ALS. Participants’ reactions and adjustments post-ALS diagnosis are described in “the aftermath of diagnosis.” In this third theme, we highlight participants’ shock and their need to rethink overall life plans and roles in their family.Significance of the resultsDiagnosis communication that is clear, empathetic, and adjusted to the needs of the patients as well as their caregivers is critical. More work is needed to improve diagnosis communication for ALS patients. Receiving the diagnosis of ALS leads to complete changes in life of caregivers. It is therefore necessary that medical professionals provide adequate support that allows them to plan for their future.

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