Experiences and support needs of informal caregivers of people with multimorbidity: a scoping literature review

Price, Mollie; Surr, Claire; Gough, Brendan; Ashley, Laura

doi:10.1080/08870446.2019.1626125

Cited by 66 publications

(66 citation statements)

References 92 publications

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“…Poor communication in the health-care system, generally (not just during care transitions), is a common problem expressed by many patients and their caregivers, 41 typically those who have multiple chronic conditions, 42 require significant health care and interact with various care providers across settings. 43 Care transitions, in particular, are a heightened time of vulnerability for patients and their caregivers.…”

Section: Communicating Uncertaintymentioning

confidence: 99%

An alternate level of care plan: Co‐designing components of an intervention with patients, caregivers and providers to address delayed hospital discharge challenges

Kuluski

Cadel

et al. 2020

Health Expectations

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Objective To engage with patients, caregivers and care providers to co‐design components of an intervention that aims to improve delayed hospital discharge experiences. Design This is a qualitative study, which entailed working groups and co‐design sessions utilizing World Café and deliberative dialogue techniques to continually refine the intervention. Setting and Participants Our team engaged with 61 participants (patients, caregivers and care providers) in urban and rural communities across Ontario, Canada. A 7‐member Patient and Caregiver Advisory Council participated in all stages of the research. Results Key challenges experienced during a delayed discharge by patients, caregivers and care providers were poor communication and a lack of care services. Participants recommended a communication guide to support on‐going conversation between care providers, patients and caregivers. The guide included key topics to cover and questions to ask during initial and on‐going conversations to manage expectations and better understand the priorities and goals of patients and caregivers. Service recommendations included getting out of bed and dressed each day, addressing the psycho‐social needs of patients through tailored activities and having a storyboard at the bedside to facilitate on‐going engagement. Discussion and Conclusions Our findings outline ways to meaningfully engage patients and caregivers during a delayed hospital discharge. Combining this with a minimal basket of services can potentially facilitate a better care experience and outcomes for patients, their care providers and families.

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Section: Communicating Uncertaintymentioning

confidence: 99%

An alternate level of care plan: Co‐designing components of an intervention with patients, caregivers and providers to address delayed hospital discharge challenges

Kuluski

Cadel

et al. 2020

Health Expectations

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“…19,21,22 A recent scoping literature review of 27 quantitative and qualitative studies of the experiences of caregivers of adults with multimorbidity found that caregivers carried out a range of time-consuming tasks to support the care recipient such as providing physical care, stimulating the older adult, and scheduling and attending medical appointments. 23 The additional burden associated with these tasks often resulted in increased stress, anxiety, and depression. 23 The review found that caregivers were uncertain about how to manage the care recipients' symptoms and conditions and needed more information from health care providers on how to recognize and manage symptoms or side effects.…”

Section: Introductionmentioning

confidence: 99%

“…23 The additional burden associated with these tasks often resulted in increased stress, anxiety, and depression. 23 The review found that caregivers were uncertain about how to manage the care recipients' symptoms and conditions and needed more information from health care providers on how to recognize and manage symptoms or side effects. While some studies included in the review identified positive outcomes of caregiving (e.g., enhanced learning and empathy), negative outcomes were commonly described such as lack of time for self-care and decreased social networks and supports.…”

Section: Introductionmentioning

confidence: 99%

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

et al. 2020

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Background: Older adults with multiple chronic conditions (MCC) rely heavily on caregivers for assistance with care. However, we know little about their psychosocial experiences and their needs for support in managing MCC. The purpose of this study was to explore the experiences of caregivers of older adults living in the community with MCC. Methods: This qualitative study was a secondary analysis of previously collected data from caregivers in Ontario and Alberta, Canada. Participants included caregivers of older adults (65 years and older) with three or more chronic conditions. Data were collected through in-depth, semi-structured interviews. Interview transcripts were coded and analyzed using Thorne’s interpretive description approach. Results: Most of the 47 caregiver participants were female (76.6%), aged 65 years of age or older (61.7%), married (87.2%) and were spouses to the care recipient (68.1%). Caregivers’ experiences of caring for community-living older adults with MCC were complex and included: (a) dealing with the demands of caregiving; (b) prioritizing chronic conditions; (c) living with my own health limitations; (d) feeling socially isolated and constrained; (e) remaining committed to caring; and (f) reaping the rewards of caregiving. Conclusions: Healthcare providers can play key roles in supporting caregivers of older adults with MCC by providing education and support on managing MCC, actively engaging them in goal setting and care planning, and linking them to appropriate community health and social support services. Communities can create environments that support caregivers in areas such as social participation, social inclusion, and community support and health services.

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“…In future studies, it would be important to evaluate unmet needs in different stages of the care provision since caregivers’ needs can change over illness and ageing trajectories. Understanding the kind of needs that emerge throughout time, and how they vary according to the intensity of care and dependency level, could inform the design and adequacy of interventions in the care‐giving continuum at such advanced ages (Price et al., 2020).…”

Section: Discussionmentioning

confidence: 99%

Unmet needs of informal carers of the oldest old in Portugal

Alves

Ribeiro

Paúl

2020

Health Soc Care Community

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Developed countries face a fast ageing population and an increase in longevity, two aspects that pose several political, economic, social and health challenges due to the raise of morbidity and disability in later life. In Portugal, individuals aged 80 and older constitute 5.0% (532,219) of the total population (10,562,178) and 26.5% of the population aged 65+ (2,010,064; Brandão, Ribeiro, & Paúl, 2017). Projections for 2080 show a growth by 12.7% points of the oldest old population within the EU-28 (Eurostat, 2019). Specifically for Portugal (Instituto Nacional de Estatística, I. P., 2018), a growth of 12.0% is expected, rising to 17.0% the proportion of oldest-old in the total national population. Given these projections, it is essential to customise the support provided to meet the needs of this large and growing population. Trends show that living longer may lead to a long period of disability and frailty with increasing care demands (Alves, Teixeira,

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Experiences and support needs of informal caregivers of people with multimorbidity: a scoping literature review

Cited by 66 publications

References 92 publications

An alternate level of care plan: Co‐designing components of an intervention with patients, caregivers and providers to address delayed hospital discharge challenges

An alternate level of care plan: Co‐designing components of an intervention with patients, caregivers and providers to address delayed hospital discharge challenges

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

Unmet needs of informal carers of the oldest old in Portugal

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