The complexity of caregiving for community-living older adults with multiple chronic conditions: A qualitative study

Ploeg, Jenny; Garnett, Anna; Fraser, Kevin J.; Baird, Lisa Garland; Kaasalainen, Sharon; McAiney, Carrie; Markle‐Reid, Maureen; Dufour, Sinéad

doi:10.1177/2235042x20981190

Cited by 23 publications

(26 citation statements)

References 56 publications

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“…Our results revealed that caregivers of people with combined brain health and physical health conditions were the most burdened and had the highest levels of loneliness and social isolation. This finding supports our first hypothesis and extends previous findings that caregivers of people with more severe conditions and those with multimorbidity experience higher levels of stress, anxiety, and depression, [56][57][58] as well as previous findings of high burden in caregivers of people with neurodegenerative conditions, prepandemic. 4,5,16,34,40,42,59,60 Outcomes of caregivers of people with dementia and other enduring brain health conditions are often worse compared to caregivers who care for people with physical disabilities alone or who are older and frail.…”

Section: Discussionsupporting

confidence: 92%

Care burden, loneliness, and social isolation in caregivers of people with physical and brain health conditions in English‐speaking regions: Before and during the COVID‐19 pandemic

Grycuk

Chen

Almirall‐Sanchez

et al. 2022

Int J Geriat Psychiatry

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Background Public health restrictions due to the COVID‐19 (SARS CoV‐2) pandemic have disproportionately affected informal caregivers of people living with long term health conditions. We aimed to explore levels of care burden, loneliness, and social isolation among caregivers of people with enduring physical and brain health conditions in English‐speaking regions worldwide, by investigating outcomes before and during the COVID‐19 pandemic. Methods A cross‐sectional anonymous online survey data from 2287 English‐speaking caregivers of people with long term health conditions from four English‐speaking regions (UK, Ireland, USA, New Zealand) included measures of care burden, loneliness, and social isolation, reported before and during the COVID‐19 pandemic. Analyses were descriptive, followed by an ordinal regression model for predictors of burden. Results Compared to pre‐pandemic levels, all caregivers experienced a significant increase in burden, loneliness, and isolation. Caregivers of people with both brain health and physical conditions were the most burdened and had the highest levels of loneliness and isolation compared to caregivers of people with either a brain health or physical condition only. The increase in care burden among caregivers of people with brain health challenges was associated with caregiver's gender, moderate and severe emotional loneliness, magnitude and frequency of isolation during the pandemic, and care circumstances (cohabitation with the care recipient, restrictions on the ability to provide care). Conclusions Health and social care interventions should target caregivers' care circumstances and psychological outcomes, particularly in women, accounting for the significant additional burden of care, loneliness, and isolation resulting from pandemic‐related restrictions.

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Section: Discussionsupporting

confidence: 92%

Care burden, loneliness, and social isolation in caregivers of people with physical and brain health conditions in English‐speaking regions: Before and during the COVID‐19 pandemic

Grycuk

Chen

Almirall‐Sanchez

et al. 2022

Int J Geriat Psychiatry

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“…The support provided by these informal caregivers is often crucial for enabling older adults to safely remain in their home environment [ 2 - 4 ]. Caregiving support, such as assistance with activities of daily living, attending appointments, and health management, is associated with positive outcomes for both caregivers [ 5 , 6 ] and care recipients [ 7 ]. Although caregivers often willingly engage in caring, their role can negatively affect their psychological well-being, particularly when care is provided over a prolonged period [ 8 - 10 ].…”

Section: Introductionmentioning

confidence: 99%

mHealth Interventions to Support Caregivers of Older Adults: Equity-Focused Systematic Review

Garnett¹,

Northwood²,

Ting³

et al. 2022

JMIR Aging

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Background Informal caregivers, hereafter referred to as caregivers, provide support to older adults so that they can age safely at home. The decision to become a caregiver can be influenced by individual factors, such as personal choice, or societal factors such as social determinants of health, including household income, employment status, and culture-specific gender roles. Over time, caregivers’ health can be negatively affected by their caregiving roles. Although programs exist to support caregivers, the availability and appropriateness of services do not match caregivers’ expressed needs. Research suggests that supportive interventions offered through mobile health (mHealth) technologies have the potential to increase caregivers’ access to supportive services. However, a knowledge gap remains regarding the extent to which social determinants of health are considered in the design, implementation, and evaluation of mHealth interventions intended to support the caregivers of older adults. Objective This study aimed to conduct a systematic review to determine how health equity is considered in the design, implementation, and evaluation of mHealth interventions for caregivers of older adults using Cochrane Equity’s PROGRESS-Plus (place of residence, race, ethnicity, culture, language, occupation, gender, religion, education, social capital, socioeconomic status–plus age, disability, and sexual orientation) framework and synthesize evidence of the impacts of the identified caregiver-focused mHealth interventions. Methods A systematic review was conducted using 5 databases. Articles published between January 2010 and June 2021 were included if they evaluated or explored the impact of mHealth interventions on the health and well-being of informal caregivers of older adults. mHealth interventions were defined as supportive services, for example, education, that caregivers of older adults accessed via mobile or wireless devices. Results In total, 28 articles met the inclusion criteria and were included in the review. The interventions evaluated sought to connect caregivers with services, facilitate caregiving, and promote caregivers’ health and well-being. The PROGRESS-Plus framework factors were mainly considered in the results, discussion, and limitations sections of the included studies. Some PROGRESS-Plus factors such as sexual orientation, religion, and occupation, received little to no consideration across any phase of the intervention design, implementation, or evaluation. Overall, the findings of this review suggest that mHealth interventions were positively received by study participants. Such interventions have the potential to reduce caregiver burden and positively affect caregivers’ physical and mental health while supporting them as caregivers. The study findings highlight the importance of making support available to help facilitate caregivers’ use of mHealth interventions, as well as in the use of appropriate language and text. Conclusions The successful uptake and spread of mHealth interventions to support caregivers of older adults will depend on creating opportunities for the inclusive involvement of a broad range of stakeholders at all stages of design, implementation, and evaluation.

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“…With the deepening of aging population degree, long-term care for disabled elderly has become a challenging problem gradually. On the one hand, the disabled elderly hope to stay at home [11]; Nevertheless, due to the weakening of family function and the limited support family providing [10], it is di cult to fully realize the home-based long-term care for the disabled elderly, which eventually leads to the increasing demand for community care [21] .…”

Section: Discussionmentioning

confidence: 99%

A qualitative study of the interaction experiences between family caregivers and community nurses for disabled elderly people at home

Guo

Wang

Niu

et al. 2022

Preprint

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Background: Family members are currently the main caregivers of the disabled elderly people at home. With declining health and increasing frailty, caregiving of disabled elderly people becomes a task of family caregivers in conjunction with community nurses. Interaction between family caregivers and community nurses can effectively improve the quality of home care for the disabled elderly people. This study aimed to investigate the interaction experiences between family caregivers and community nurses for disabled elderly people at home.Methods: This research was a qualitative study based on semi-structured interviews. Qualitative data were collected from family caregivers of the disabled elderly and community nurses in Zhengzhou city, Henan Province. Conceptual content analysis and Colaizzi’s method was used to generate qualitative codes and identify themes.Results: A total of 12 interviews were completed, including 7 family caregivers and 5 community nurses. Three themes were identified: 1)Establish a collaborative relationship ; 2)Get professional support; 3) Factors that promote and hinder the interaction.Conclusions: Findings from this study suggested that the interaction between family caregivers and community nurses will be very beneficial, which will reduce the burden of family caregivers and improve the quality of care for disabled elderly people. Providing a new perspective that we can develop and implement intervention to facilitate positive interactions and bring the highest quality of care to older adults with disabilities.

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The complexity of caregiving for community-living older adults with multiple chronic conditions: A qualitative study

Cited by 23 publications

References 56 publications

Care burden, loneliness, and social isolation in caregivers of people with physical and brain health conditions in English‐speaking regions: Before and during the COVID‐19 pandemic

Care burden, loneliness, and social isolation in caregivers of people with physical and brain health conditions in English‐speaking regions: Before and during the COVID‐19 pandemic

mHealth Interventions to Support Caregivers of Older Adults: Equity-Focused Systematic Review

A qualitative study of the interaction experiences between family caregivers and community nurses for disabled elderly people at home

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