Experiences of burden, needs, rewards and resilience in family caregivers of people living with Motor Neurone Disease/Amyotrophic Lateral Sclerosis: A secondary thematic analysis of qualitative interviews

Weisser, Fabia B; Bristowe, Katherine; Jackson, Diana

doi:10.1177/0269216315575851

Cited by 80 publications

(114 citation statements)

References 27 publications

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“…The same results are presented in another longitudinal study of 10 family caregivers for patients with Motor neuron disease/ Amyotrophic Multiple Sclerosis, followed for 2 years. In this study, the authors stress that initially there were many needs; however, over time, they seemed to become less prevalent as the caregiver became more experienced, despite the person's condition deteriorating (15) . In contrast, a longitudinal study with 18 caregivers of dependent patients on two occasions of before and after hospital discharge emphasizes that what changed over time was just the focus of the questions.…”

Section: Resultsmentioning

confidence: 88%

“…Activities related to feeding, personal hygiene, mobility and dressing, previously performed with ease in daily life, have become tasks that require specific care and support (1) . The domain of knowledge and learning how-to for family caregivers is one of the needs mentioned in most studies (7,9,(11)(12)(14)(15) , as this allows for better understanding of this new role of Being the caregiver. Although the progressive nature of this process is visible in some studies, namely its variation in complexity and amplitude with regard to special needs (1,7,9,12,(14)(15) , the family caregiver adapts to the situation after a period and feels like they can overcome these needs (1) .…”

Section: Resultsmentioning

confidence: 99%

“…The domain of knowledge and learning how-to for family caregivers is one of the needs mentioned in most studies (7,9,(11)(12)(14)(15) , as this allows for better understanding of this new role of Being the caregiver. Although the progressive nature of this process is visible in some studies, namely its variation in complexity and amplitude with regard to special needs (1,7,9,12,(14)(15) , the family caregiver adapts to the situation after a period and feels like they can overcome these needs (1) . A longitudinal study of 60 family caregivers for patients of a stroke (cerebrovascular accident -CVA) observed a change in the needs of caregivers over time: before hospital discharge, two weeks after hospitalization and 3 months after hospitalization, revealing a decrease of these needs over time (14) .…”

Section: Resultsmentioning

confidence: 99%

“…The 11 articles were analyzed in depth and grouped by similarity. (15) 2015 Qualitative England qualitative and five were quantitative. They were distributed as illustrated in Figure 2, in the following countries: Canada, USA, Brazil, Colombia, England, Italy and Thailand.…”

Section: What Are the Needs Of Family Caregivers Of Dependent Patients?mentioning

confidence: 99%

“…Emotional and interpersonal needs, namely being able to rely on someone to vent and to get recognition for their care efforts from friends and family are described throughout the analyzed studies, showing the importance of support for caregivers (1)(2)(3)7,(11)(12)(13)(14)(15) . Research results indicate that caregivers experience many challenges, including unmet needs in areas of relational support, such as maintaining long-term relationships and emotional support (7) .…”

Section: The Importance Of Support -Emotional and Interpersonal Needsmentioning

confidence: 99%

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Family caregivers: what do they need? An integrative review

Fernandes

Ângelo

2016

Rev. esc. enferm. USP

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Objective: Aimed to identify the main needs expressed by family caregivers in caring for a dependent person. Method: An integrative review of the literature in the period between 2010 and 2015 using specific search engine tools in the EBSCO and SCOPUS databases. Results: 11 articles were selected, and the analysis of the scientific evidence obtained allowed for organizing the results into five thematic areas: transition into care, being responsible for everything, the importance of support, access to formal support, communication and information processes. Conclusion: The results showed that caregivers have many needs in different areas, which should be addressed in nursing interventions.

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Section: Resultsmentioning

confidence: 88%

Section: Resultsmentioning

confidence: 99%

Section: Resultsmentioning

confidence: 99%

Section: What Are the Needs Of Family Caregivers Of Dependent Patients?mentioning

confidence: 99%

Section: The Importance Of Support -Emotional and Interpersonal Needsmentioning

confidence: 99%

See 3 more Smart Citations

Family caregivers: what do they need? An integrative review

Fernandes

Ângelo

2016

Rev. esc. enferm. USP

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Burden and benefit—A mixed methods study of informal Amyotrophic Lateral Sclerosis caregivers in Ireland and the Netherlands

Kennedy

Conroy

Heverin

et al. 2022

Int J Geriat Psychiatry

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Objectives Amyotrophic Lateral Sclerosis (ALS) is a systemic and terminal disorder of the central nervous system which causes paralysis of limbs, respiratory and bulbar muscles, impacting on physical, communication, cognitive and behavioural functioning. Informal caregivers play a key role in the care of people with ALS. This study aimed to explore experiences of burden along with any beneficial aspects of caregiving in ALS. An understanding of both burden and benefit is important to support the informal caregiver and the person with ALS. Methods/Design This exploratory mixed methods study characterizes two groups of informal caregivers in Ireland (n = 76) and the Netherlands (n = 58). In a semi‐structured interview, quantitative data were collected in the form of standardized measures assessing psychological distress, quality of life and burden. Qualitative data were collected from an open ended question, in which caregivers identified positive aspects in their caregiving experience. These data types were purposefully mixed in the analysis and interpretation stages, to provide a greater depth of evidence through diverse research lenses. Results The caregiver cohorts were predominantly female (69%) and spouse/partners (84%) of the person with ALS. Greater levels of self‐assessed burden were found among the caregivers in the Netherlands (p < 0.05), and higher levels of quality of life among the cohort from Ireland (p < 0.05). Themes generated through qualitative analysis identified caregiver satisfaction, ability to meet the patient's needs and the (re) evaluation of meaning and existential aspects of life as positive aspects of caregiving. Existential factors were identified frequently by the caregivers in Ireland, and personal satisfaction and meeting their care recipient's needs by caregivers in the Netherlands. Three percent of all respondents reported there was nothing positive about caregiving. Conclusions Based on our findings, we suggest that both burden and the presence of positive factors should be evaluated and monitored. The possibility of concurrent positive and challenging experiences should be considered in the design and delivery of supportive interventions for informal caregivers.

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Genetic counseling and diagnostic genetic testing for familial amyotrophic lateral sclerosis and/or frontotemporal dementia: A qualitative study of client experiences

Crook

Jacobs

Newton‐John

et al. 2022

Journal of Genetic Counseling

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Genetic counseling and diagnostic genetic testing is part of the multidisciplinary care of people with amyotrophic lateral sclerosis (ALS, commonly called motor neurone disease, MND) and frontotemporal dementia (FTD). We explored client experiences of genetic counseling and diagnostic testing to inform the care of future families. Semi‐structured interviews with individuals with ALS/MND/FTD or their relatives were conducted. The study was designed to include a wide variety of participants with varying disease status and abilities. Genetic counseling and diagnostic testing experiences were explored using interpretive description methodology. Bioecological theory was used as the framework for the reflexive thematic analysis. Eighteen individuals with ALS/MND/FTD or their relatives from 13 Australian families participated. Three themes were identified: sharing knowledge, (un)supportive care, and ‘circumstance is everything’. Consistent with bioecological theory, one’s genetic counseling experience was informed by individual circumstances, time, and proximal factors. These informed the level of information and support required in the genetic counseling process. Although some client circumstances cannot be changed, efforts could be made to enhance genetic counseling experiences by improving interactions between the client and their care team. Some clients may benefit from further discussions regarding the familial implications of genetic testing, and greater support with family communication. Clients’ needs were derived from the data and will contribute to genetic counseling consensus guidelines.

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Experiences of burden, needs, rewards and resilience in family caregivers of people living with Motor Neurone Disease/Amyotrophic Lateral Sclerosis: A secondary thematic analysis of qualitative interviews

Cited by 80 publications

References 27 publications

Family caregivers: what do they need? An integrative review

Family caregivers: what do they need? An integrative review

Burden and benefit—A mixed methods study of informal Amyotrophic Lateral Sclerosis caregivers in Ireland and the Netherlands

Genetic counseling and diagnostic genetic testing for familial amyotrophic lateral sclerosis and/or frontotemporal dementia: A qualitative study of client experiences

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