Development of an Item Pool for a Needs-Based Measure of Quality of Life of Carers of a Family Member with Dementia

Oyebode, Jan R.; Pini, Simon; Ingleson, Emma; Megson, Molly; Horton, Mike; Clare, Linda; Al‐Janabi, Hareth; Brayne, Carol; Wright, Penny

doi:10.1007/s40271-018-0334-4

Cited by 12 publications

(24 citation statements)

References 33 publications

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“…There are an estimated 46.8 million people with dementia globally and the number is likely to double by 2035 3 4. Much of the care for persons with dementia living at home is provided by informal carers 5. In the UK, there are over 700 000 informal carers for persons with dementia 6.…”

Section: Introductionmentioning

confidence: 99%

Carers’ experience of using assistive technology for dementia care at home: a qualitative study

2020

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ObjectiveAssistive technology (AT) can help carers (family, friends and neighbours) and people with dementia to stay well and safely at home. There are important gaps in what we know about experience of using AT from the perspective of carers of persons with dementia. This study investigates carers’ experience of using AT in supporting and caring for persons with dementia who live at home.DesignQualitative phenomenological study with semi-structured interviews to achieve data saturation and thematic analysis to identify key themes.SettingCommunity-based within the UK.ParticipantsTwenty-three (14 women, 9 men) adult carers of persons with dementia who have used at least one AT device.ResultsAll participants reported benefiting to varying degrees from using AT. There were 5 themes and 18 subthemes that highlighted reasons for using AT and use of AT over time. Providing care for a person with dementia, motivation for using AT, changes to roles and routines, carer knowledge and skills for using AT and social, environmental and ethical considerations were the main themes. This study showed that AT can provide reassurance and support for carers of persons with dementia but there are difficulties with acquiring and continued use of AT as dementia progresses.ConclusionsCarers consider AT as an adjunct to care they provided in caring for a person with dementia. Use of AT should be considered in the personal, social and environmental context of persons with dementia and their carers. Further research and policy interventions are needed to address best use of resources and guidance on data sharing and data protection while using AT.

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Section: Introductionmentioning

confidence: 99%

Carers’ experience of using assistive technology for dementia care at home: a qualitative study

2020

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“…SIDECAR scales exhibited “good” to “very good” internal and test–retest reliability. Confirmation of content and face validity was undertaken in the item generation phase of SIDECAR development ( Oyebode et al, 2018 ). Establishing convergent validity requires relevant measures to be available for comparative purposes.…”

Section: Discussionmentioning

confidence: 99%

“…Item generation, reported in detail elsewhere ( Oyebode et al, 2018 ; Pini et al, 2018 ), comprised interviews, to capture the impact of caring, with 42 carers of a relative with dementia (Alzheimer’s disease, vascular dementia, other forms of dementia) living in the community. Where possible, exact phrases provided the wording for the initial 99 items generated.…”

Section: Methodsmentioning

confidence: 99%

“…Twenty-two cognitive interviews with carers pretested and assessed response formats. Final review and an administration rehearsal with two carers resulted in an item pool of 70 dichotomous (agree/disagree) items, some positively and others negatively phrased ( Oyebode et al, 2018 ).…”

Section: Methodsmentioning

confidence: 99%

“…This comprises 70 short statement items generated from the qualitative interviews such as, “I have had to put my own life on hold,” with response options: “agree”/“disagree” ( Oyebode et al, 2018 ). The time frame relates to “today.”…”

Section: Methodsmentioning

confidence: 99%

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Measuring Quality of Life in Carers of People With Dementia: Development and Psychometric Evaluation of Scales measuring the Impact of DEmentia on CARers (SIDECAR)

et al. 2019

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Background and Objectives A 2008 European consensus on research outcome measures in dementia care concluded that measurement of carer quality of life (QoL) was limited. Three systematic reviews (2012, 2017, and 2018) of dementia carer outcome measures found existing instruments wanting. In 2017, recommendations were published for developing reliable measurement tools of carers’ needs for research and clinical application. The aim of this study was to develop a new instrument to measure the QoL of dementia carers (family/friends). Methods Items were generated directly from carers following an inductive needs-led approach. Carers (n = 566) from 22 English and Welsh locations then completed the items and comparator measures at three time points. Rasch, factor, and psychometric (reliability, validity, responsiveness, and minimally important differences [MIDs]) analyses were undertaken. Results Following factor analysis, the pool of 70 items was refined to three independent scales: primary SIDECAR-D (direct impact of caring upon carer QOL, 18 items), secondary SIDECAR-I (indirect impact, 10 items), and SIDECAR-S (support and information, 11 items). All three scales satisfy Rasch model assumptions. SIDECAR-D, I, S psychometrics: reliability (internal ≥ .70; test–retest ≥ .85); convergent validity (as hypothesized); responsiveness (effect sizes: D: moderate; I and S: small); MIDs (D = 9/100, I = 10/100, S = 11/100). Discussion and Implications SIDECAR scales demonstrate robust measurement properties, meeting COSMIN quality standards for study design and psychometrics. SIDECAR provides a theoretically based needs-led QoL profile specifically for dementia carers. SIDECAR is free for use in public health, social care, and voluntary sector services, and not-for-profit organizations.

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Care partner needs of people with neurodegenerative disorders: What are the needs, and how well do the current assessment tools capture these needs? A systematic meta‐review

Kinchin

Edwards

Adrion

et al. 2022

Int J Geriat Psychiatry

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Objectives The burden on care partners, particularly once dementia emerges, is among the greatest of all caregiving groups. This meta‐review aimed to (1) synthesis evidence on the self‐reported needs of care partners supporting people living with neurodegenerative disorders; (2) compare the needs according to care partner and care recipient characteristics; and (3) determine the face validity of existing care partner needs assessment tools. Methods We conducted a systematic review of reviews involving a thematic synthesis of care partner needs and differences in needs according to demographic and other characteristics. We then conducted a gap analysis by identifying the themes of needs from existing needs assessment tools specific to dementia and cross‐matching them with the needs derived from the thematic synthesis. Results Drawing on 17 published reviews, the identified range of needs fell into four key themes: (1) knowledge and information, (2) physical, social and emotional support, (3) care partner self‐care, and (4) care recipient needs. Needs may differ according to disease trajectory, relationship to the care recipient, and the demographic characteristics of the care partner and recipient. The ‘captured needs’ range between 8% and 66% across all the included needs assessment tools. Conclusions Current tools do not fully or adequately capture the self‐identified needs of care partners of people living with neurodegenerative disorders. Given the high burden on care partners, which has been further exacerbated by the COVID‐19 (SARS CoV‐2) pandemic, the needs assessment tools should align with the self‐reported needs of care partners throughout the caregiving trajectory to better understand unmet needs and target supportive interventions.

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Development of an Item Pool for a Needs-Based Measure of Quality of Life of Carers of a Family Member with Dementia

Cited by 12 publications

References 33 publications

Carers’ experience of using assistive technology for dementia care at home: a qualitative study

Carers’ experience of using assistive technology for dementia care at home: a qualitative study

Measuring Quality of Life in Carers of People With Dementia: Development and Psychometric Evaluation of Scales measuring the Impact of DEmentia on CARers (SIDECAR)

Care partner needs of people with neurodegenerative disorders: What are the needs, and how well do the current assessment tools capture these needs? A systematic meta‐review

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