Longitudinal appraisals of family caregiving for people with disabilities enrolled in Medicaid managed care

Crabb, Caitlin; Owen, Randall; Stober, Kaitlin; Heller, Tamar

doi:10.1080/09638288.2018.1557266

Cited by 3 publications

(3 citation statements)

References 35 publications

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“…Health advocacy programs for individuals with ID may support their comprehension and communication, improve documentation of health encounters and use of preventive health screening programs 35 , 38 and primary care, 39 , 40 and promote active participation in health encounters. Heavy reliance on family members for both advocacy and care is common, 35 , 41 but health care encounters must address family needs in addition to assessing and making reasonable adjustments to the needs of the individual with ID.…”

Section: Discussionmentioning

confidence: 99%

Association of Intellectual Disability With All-Cause and Cause-Specific Mortality in Sweden

et al. 2021

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Section: Discussionmentioning

confidence: 99%

Association of Intellectual Disability With All-Cause and Cause-Specific Mortality in Sweden

et al. 2021

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“…The objective components of burden were partially related to the subjective self-perceived burden. As previous studies have shown, hours of daily caregiving are associated with greater burden 7 41. Nocturnal caregiving, which required getting up during the night several times, seemed to be a risk factor for burden.…”

Section: Discussionmentioning

confidence: 65%

“…Despite being supported by human and technical assistance, the burden on families is likely to be considerable. Some studies have explored burden on informal caregivers who have children with multiple disabilities7–9 and in informal caregivers who have children with cerebral palsy 10–14. The caregivers reported deteriorated health status, financial difficulties, restriction in their social participation and physical overload.…”

Section: Introductionmentioning

confidence: 99%

Impact of severe polyhandicap cared for at home on French informal caregivers’ burden: a cross-sectional study

Rousseau¹,

Baumstarck²,

Valkov³

et al. 2020

BMJ Open

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Objectives Polyhandicap (PLH), defined by a combination of profound intellectual impairment and serious motor deficits, is a severe condition with complex disabilities. In France, care of the large majority of PLH individuals is managed in specialised rehabilitation centres or residential facilities, but some of PLH individuals are cared for at home. The aims of this study were to assess the self-perceived burden among informal caregivers of PLH individuals and to identify potential determinants of this burden. Design Cross-sectional study (Neuropaediatric Department, Trousseau Hospital, Paris, France). settings PLH children were recruited from a specialised paediatric/neurological department. Participants The selection criteria of caregivers were age above 18 years and being the PLH individual's next of kin. Outcomes measures From March 2015 to December 2016, data were collected from the caregivers, including sociodemographical data, health status, psychobehavioural data (quality of life, mood disorders and coping) and self-perceived burden. In addition, the health status of the PLH individual was collected. Relationships between the burden scores and potential determinants were tested (correlations coefficients, Mann-Whitney tests, generalised estimating equations models). results Eighty-four children were eligible; 77 families returned their questionnaire. The informal caregivers of PLH children experienced a high level of perceived burden (scores ranged from 55±20 to 81±12). Eighty per cent of them had more than 5 hours of daily caregiving and 51% of them had to get up more than twice during the night. The main factors associated with caregiver burden were age, financial issues, health status, daily care and coping strategies. The patients' health status was not associated with caregiver burden. Conclusions Some of the caregiver burden determinants might be modifiable. These findings should help healthcare workers and health-decision makers implement specific and appropriate interventions. trial registration number NCT02400528.bACkgrOunD Polyhandicap (PLH) is a severe health condition with complex disabilities. This chronic disorder occurs in an immature brain,

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Enabling Families to Support Adults with an Intellectual Disability to Live a Life of Their Choosing

McCausland

O’Donovan

2023

Intellectual Disabilities: Health and Social Care Across the Lifespan

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Longitudinal appraisals of family caregiving for people with disabilities enrolled in Medicaid managed care

Cited by 3 publications

References 35 publications

Association of Intellectual Disability With All-Cause and Cause-Specific Mortality in Sweden

Association of Intellectual Disability With All-Cause and Cause-Specific Mortality in Sweden

Impact of severe polyhandicap cared for at home on French informal caregivers’ burden: a cross-sectional study

Enabling Families to Support Adults with an Intellectual Disability to Live a Life of Their Choosing

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