Essential information and support needs of family caregivers

Wackerbarth, Sarah B.; Johnson, Mitzi M. S.

doi:10.1016/s0738-3991(01)00194-x

Cited by 88 publications

(140 citation statements)

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“…A number of empirical studies have attempted to quantify the level and types of information needed by carers of people with dementia (e.g., Thompsell & Lovestone, 2002, Wackerbarth & Johnson, 2002, Wald, et al 2003. These studies, although not from information science, implicitly adopt the system-centred paradigm.…”

Section: System-centred Approaches To the Study Of Carers' Informatiomentioning

confidence: 99%

“…First, although quantitative research aims to be objective, the measures used in the studies by Wald et al (2003), and Thompsell and Lovestone (2002) to ascertain information needs, employed a pre-defined list of information categories. Only Wackerbarth and Johnson (2002) used a mixed-methods approach , in which categories of information need originated from in depth interviews with carers about their general needs . All of the studies asked respondents to rate the importance of items of information, which raises questions about the reliability of the results as this may yield results that do not accurately reflect real information needs, with the majority of items likely to be rated as very or somewhat important (Mills and Sullivan, 1999), and suggesting possible ceiling effects (Wackerbarth and Johnson, 2002).…”

Section: System-centred Approaches To the Study Of Carers' Informatiomentioning

confidence: 99%

“…Only Wackerbarth and Johnson (2002) used a mixed-methods approach , in which categories of information need originated from in depth interviews with carers about their general needs . All of the studies asked respondents to rate the importance of items of information, which raises questions about the reliability of the results as this may yield results that do not accurately reflect real information needs, with the majority of items likely to be rated as very or somewhat important (Mills and Sullivan, 1999), and suggesting possible ceiling effects (Wackerbarth and Johnson, 2002). The findings could also be limited by the theoretical framework.…”

Section: System-centred Approaches To the Study Of Carers' Informatiomentioning

confidence: 99%

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Understanding the information behaviours of carers of people with dementia: A critical review of models from information science

Harland

Bath

2008

Aging & Mental Health

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AimThe aim of this review is to discuss how existing models of information behaviour from information may help to improve provision of information to carers of people with dementia. The paper analyses existing models of information behaviour derived from information science, describes studies that have examined these models in relation to health, and discusses ways in which they help to understand the information behaviours of carers of people with dementia. MethodsA comprehensive review of the literature on studies of information needs and a critical examination of models of information behaviors in relation to health were undertaken. ResultsTwo dominant paradigms in information science research were identified, involving system-centred and user-centred approaches. System-centred approaches and studies are limited in that they have made assumptions on the types of information that people may require, the way in which information should be provided, the timing of information provision and have treated groups as homogenous, failing to take account of individual preferences. In contrast, user-centred approaches recognise the unique needs of individuals and that information needs are subjective and affected by a variety of factors. User-centred models of information behaviour, particularly Dervin's sense-making theory and 3 Wilson's Information Seeking Behaviour Models, could be useful in developing a better understanding of the information behaviours of carers of people with dementia. ConclusionAdopting a user-centred approach to studying the information behaviours of carers of people with dementia will take account of individual needs. Testing existing models of information behaviour within this group may help to develop interventions to meet the needs of individual carers and people with dementia.

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Section: System-centred Approaches To the Study Of Carers' Informatiomentioning

confidence: 99%

Section: System-centred Approaches To the Study Of Carers' Informatiomentioning

confidence: 99%

Section: System-centred Approaches To the Study Of Carers' Informatiomentioning

confidence: 99%

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Understanding the information behaviours of carers of people with dementia: A critical review of models from information science

Harland

Bath

2008

Aging & Mental Health

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“…16,17 The effects on the needs for early diagnosis, financial and legal aspects of the disease, and meaningful activities were not studied. CM was not found to have any effect on patients' daily activities, cognition and depression.A meta-analysis of the effects of CM (Figure 1 and Supplemental Appendix 4, available at http:// 61,62,66,73,74,76,81,85,91,93,95,97 Canada 84 USA [14][15][16] Europe (21 studies) UK 20,52,53,64,69,72,77,78,83,84,99 The Netherlands The effect on depression of caregivers was uncertain (SMD -0.23, 95% CI, -0.46 to 0.01, P = .06), 14,17,18 and there was no effect on caregivers' burden (SMD 0.17, 95% CI, -0.18 to 0.52, P = .34). …”

mentioning

confidence: 99%

“…Education/ counseling [59][60][61][62][63][64][65][66][67][68][72][73][74][75]79,80,82,[85][86][87][88][89][92][93][94][95][96][97] Need for specific information on medical and interpersonal aspects of the disease, meaningful counseling on dealing with behavioral problems, guidelines on dementia before and after diagnosis.…”

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confidence: 99%

Family Physician–Case Manager Collaboration and Needs of Patients With Dementia and Their Caregivers: A Systematic Mixed Studies Review

Khanassov

Vedel

2016

Ann Fam Med

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PURPOSE Dementia case management (CM) in primary care is a complex intervention aimed at identifying the various needs of patients with dementia and their caregivers, as well as the organization and coordination of care. A key element of CM is the collaboration of family physicians with case managers. We conducted a systematic mixed-studies review to identify the needs of the patientcaregiver dyad and the effects of CM. METHODSWe searched MEDLINE, PsycINFO, and EMBASE up to October 2014, regardless of the study design. Our main outcomes were needs of patients and their caregivers and the effects of CM on these needs. We used narrative syntheses to develop a taxonomy of needs and to describe the effects of CM on those needs. We used meta-analysis to calculate the prevalence of needs and the standardized mean differences to evaluate the effects of CM on the needs identified.RESULTS Fifty-four studies were included. We identified needs of the patientcaregiver dyad and needs of the patient and caregiver individually. CM addressed the majority of the identified needs. Still, some very common needs (eg, early diagnosis) are overlooked while other needs (eg, education on the disease) are well addressed. Fully establishing the value of CM is difficult given the small number of studies of CM in primary care.CONCLUSIONS There is good evidence that case managers, in collaboration with family physicians, have a pivotal role in addressing the needs of the patientcaregiver dyad. 2016;14:166-177. doi: 10.1370/afm.1898. Ann Fam Med INTRODUCTIONT he proportion of people with dementia is growing dramatically. According to the US Alzheimer's Association, by 2030, 50% of Americans aged 65 years and older will be diagnosed with dementia. 1 In Canada in 2011, 747,000 Canadians lived with cognitive impairment.2 Today, the combined costs are $33 billion per year, 1 and they are projected to increase to $872 billion by 2038. 3,4 Worldwide, dementia is the main contributor to disability-adjusted life years (11.2%), representing a greater burden than cerebral vascular accident (9.5%), heart disease (5.0%), or cancer (2.4%). 5People with dementia need help with challenging changes in behavior, memory, physical disability, and mood. 6 The main source of help is family caregivers, who often suffer from the burdens of caregiving and from depression and health problems. 7 It has been shown that early intervention makes the greatest difference in management of symptoms. 1 The World Health Organization states that it would be challenging to intervene without effective involvement of primary care. 8 Dementia case management (CM) interventions are becoming a central component of primary health care organizations in North America and Europe. [9][10][11][12] According to the 167Case Management Society of America, case management is "a collaborative process of assessment, planning, facilitation, care coordination, evaluation, and advocacy for options and services to meet an individual's and family's comprehensive health needs through communi...

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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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Essential information and support needs of family caregivers

Cited by 88 publications

References 15 publications

Understanding the information behaviours of carers of people with dementia: A critical review of models from information science

Understanding the information behaviours of carers of people with dementia: A critical review of models from information science

Family Physician–Case Manager Collaboration and Needs of Patients With Dementia and Their Caregivers: A Systematic Mixed Studies Review

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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