Social aspects of caregiving for people living with motor neurone disease: Their relationships to carer well-being

Love, Anthony; Street, Annette; Ray, Robin; Harris, Rod; Lowe, Roger M.

doi:10.1017/s1478951505050054

Cited by 15 publications

(14 citation statements)

References 17 publications

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“…Caregiver burden may be mitigated through positive social support (26,37,49,53,54), Studies in the U.K. and Australia identified how high satisfaction with social support helped mitigate potentially negative effects of MND on quality of life and the marital relationship between spouses and caregivers (26,53). Several Yet MND caregivers, particularly those providing prolonged care, face challenges seeking and maintaining social support, interaction, and help from informal networks (13,54,57).…”

Section: Mitigating Factors Associated With Caregiver Burden and Qualmentioning

confidence: 99%

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A 10-year literature review of family caregiving for motor neurone disease: Moving from caregiver burden studies to palliative care interventions

et al. 2012

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Background: There is growing awareness that different terminal diseases translate into different family caregiver experiences, and the palliative and supportive care needs of these families are both similar and unique. Family members caring for people with motor neurone disease may experience exceptional strain due to the usually rapid and progressive nature of this terminal illness. Aim: The purpose of this review is to synthesize contemporary research and provide a comprehensive summary of findings relevant to motor neurone disease family caregivers, as well as highlight some of the suggested interventions to alleviate burden and improve quality of life for this group. Design: We conducted a comprehensive review of empirical research on family caregiving for people with motor neurone disease in peer-reviewed journals published in English, January 2000–April 2011. Fifty-nine studies met the inclusion criteria. Results: This comprehensive literature review was consistent with previous research documenting the substantial burden and distress experienced by motor neurone disease family caregivers and revealed important points in the trajectory of care that have the potential for negative effects. The diagnosis experience, assisted ventilation, cognitive changes and end-of-life decision making create challenges within a short time. This review has also implicated the need for improvements in access to palliative care services and highlighted the absence of interventions to improve care. Conclusions: Caregiver burden and quality-of-life studies on motor neurone disease family caregivers have so far dominated the research landscape .The focus needs to be on developing interventions that provide direct practical and psychosocial supports for motor neurone disease family caregivers.

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Section: Mitigating Factors Associated With Caregiver Burden and Qualmentioning

confidence: 99%

“…MND caregivers tend to have reduced social contacts, social network size and quality due to caregiving (39,54,58), which may contribute to social isolation and perceived burden (54).…”

Section: Mitigating Factors Associated With Caregiver Burden and Qualmentioning

confidence: 99%

A 10-year literature review of family caregiving for motor neurone disease: Moving from caregiver burden studies to palliative care interventions

et al. 2012

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“…6,15 Caregivers may suffer financial hardship, 16 changes to family roles and relationships, 17 and social isolation. 14,18 As a result, both patients with NDD and their caregivers report lower quality of life compared to their contemporaries. 19 Despite the growing body of literature describing the stressors associated with caring for someone with an NDD, there is limited information about their needs at a population level.…”

Section: Introductionmentioning

confidence: 99%

Caregivers of People with Neurodegenerative Diseases: Profile and Unmet Needs from a Population-Based Survey in South Australia

Aoun

McConigley

Abernethy

et al. 2010

Journal of Palliative Medicine

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Introduction: Neurodegenerative diseases (NDD) are characterized by progressive decline and loss of function, requiring considerable third-party care. NDD carers report low quality of life and high caregiver burden. Despite this, little information is available about the unmet needs of NDD caregivers. Methods: Data from a cross-sectional, whole of population study conducted in South Australia were analyzed to determine the profile and unmet care needs of people who identify as having provided care for a person who died an expected death from NDDs including motor neurone disease and multiple sclerosis. Bivariate analyses using w 2 were complemented with a regression analysis. Results: Two hundred and thirty respondents had a person close to them die from an NDD in the 5 years before responding. NDD caregivers were more likely to have provided care for more than 2 years and were more able to move on after the death than caregivers of people with other disorders such as cancer. The NDD caregivers accessed palliative care services at the same rate as other caregivers at the end of life, however people with an NDD were almost twice as likely to die in the community (odds ratio [OR] 1.97; 95% confidence interval [CI] 1.30 to 3.01) controlling for relevant caregiver factors. NDD caregivers reported significantly more unmet needs in emotional, spiritual, and bereavement support. Conclusion: This study is the first step in better understanding across the whole population the consequences of an expected death from an NDD. Assessments need to occur while in the role of caregiver and in the subsequent bereavement phase.

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“…24 Many different tools have been developed to examine caregiver burden. The names given to caregiver burden scales include not only the term burden, but may use other constructs such as outcomes, 26,27 appraisal, 28 inventory, 29 impact, 30 network, 31 quality of life, 32 reaction, 33 risk, 34 strain, 35,36 hassles, 37 cost of care, 38 experiences, 39 and stress. 40 Therefore it is important for the clinician and researcher to review the actual items that are used to measure these various constructs, because many of these instruments do measure the hardships experienced physically, psychologically, emotionally, socially and financially by caregivers.…”

Section: Relevant Studies Identified Through Searchmentioning

confidence: 99%

The reliability, validity and feasibility of tools used to screen for caregiver burden: a systematic review

Whalen

Buchholz

2009

JBI Database of Systematic Reviews and Implementation Reports

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Objective The overall objective of this review is to quantitatively measure the psychometric properties and the feasibility of caregiver burden screening tools. The more specific objectives were to determine the reliability, validity as well as feasibility of tools that are used to screen for caregiver burden and strain.Inclusion criteria This review considered international quantitative research papers that addressed the psychometric properties and feasibility of caregiver burden screening tools. Search strategyThe search strategy aimed to find both published and unpublished studies from 1980-2007 published only in the English language. An initial limited search of MEDLINE and CINAHL was undertaken followed by analysis of the text words contained in the title and abstract and the index terms used to describe the article. A second search identified keywords and index terms across major databases. Third, the reference list of identified reports and articles was searched for additional studies.Methodological quality Each paper was assessed by two independent reviewers for methodological quality prior to inclusion in the review using an appropriate critical appraisal instrument from the Joanna Briggs Institutes" System for the Unified Management, Assessment and Review (SUMARI) package.Limitations Because burden is a multidimensional construct defined internationally with a multitude of other terms, only those studies whose title, abstract or keywords contained the search terminology developed for this review were identified for retrieval. ResultsThe construct of caregiver burden is not standardized, and many terms are used to describe burden. A caregiver is also identified as a carer. Instruments exist in multiple languages and have been tested in multiple populations. A total of 112 papers, experimental and non-experimental in nature, were included in the review. The majority of papers were non-experimental studies that tested or used a caregiver burden screening tool. Because of the nature of these papers, a meta-analysis of the results was not possible. Instead a table is used to depict the 74 caregiver burden screening tools that meet the psychometric and feasibility standards of this review. The Zarit Burden Interview (ZBI), in particular the 22-item version, has been examined the most throughout the literature. In addition to its sound psychometric properties, the ZBI has been widely used across languages and cultures. Implications for Practice and ResearchThe significant amount of research that has already been done on psychometric testing of caregiver burden tools has provided a solid foundation for additional research. Although some tools have been well tested, many tools have published limited psychometric properties and feasibility data. The clinician needs to be aware of this and may need to team up with a researcher to obtain additional research data on their specific population before using a minimally tested caregiver burden screening tool. Because caregiver burden is multidimensional and man...

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Social aspects of caregiving for people living with motor neurone disease: Their relationships to carer well-being

Cited by 15 publications

References 17 publications

A 10-year literature review of family caregiving for motor neurone disease: Moving from caregiver burden studies to palliative care interventions

A 10-year literature review of family caregiving for motor neurone disease: Moving from caregiver burden studies to palliative care interventions

Caregivers of People with Neurodegenerative Diseases: Profile and Unmet Needs from a Population-Based Survey in South Australia

The reliability, validity and feasibility of tools used to screen for caregiver burden: a systematic review

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