A Canadian qualitative study exploring the diversity of the experience of family caregivers of older adults with multiple chronic conditions using a social location perspective

Abstract The management of multiple chronic conditions (MCC) in older adults living in the community is complex. Little is known about the experiences of interdisciplinary primary care and home providers who care for this vulnerable group. The aim of this study was to explore the experiences of healthcare providers in managing the care of community-living older adults with MCC and to highlight their recommendations for improving care delivery for this group. A qualitative interpretive description design was used. A total of 42 healthcare providers from two provinces in Canada participated in semi-structured interviews. Participants represented diverse disciplines (e.g., physicians, nurses, social workers, personal support workers) and settings (e.g., primary care and home care). Thematic analysis was used to analyze interview data. The experiences of healthcare providers managing care for older adults with MCC were organized into six major themes: (1) managing complexity associated with MCC, (2) implementing person-centred care, (3), involving and supporting family caregivers, (4) using a team approach for holistic care delivery, (5) encountering rewards and challenges in caring for older adults with MCC, and (6) recommending ways to address the challenges of the healthcare system. Healthcare providers highlighted the need for a more comprehensive integrated system of care to improve care management for older adults with MCC and their family caregivers. Specifically, they suggested increased care coordination, more comprehensive primary care visits with an interprofessional team, and increased home care support.

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

Journal of Comorbidity ◽

10.1177/2235042x20981190 ◽

2020 ◽

Vol 10 ◽

pp. 2235042X2098119

Author(s):

Jenny Ploeg ◽

Anna Garnett ◽

Kimberly D Fraser ◽

Lisa Garland Baird ◽

Sharon Kaasalainen ◽

...

Keyword(s):

Older Adults ◽

Qualitative Study ◽

Chronic Conditions ◽

Social Inclusion ◽

Secondary Analysis ◽

Community Support ◽

Care Recipient ◽

Community Living ◽

Multiple Chronic Conditions ◽

Structured Interviews

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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Identifying and understanding the health and social care needs of older adults with multiple chronic conditions and their caregivers: a protocol for a scoping review

BMJ Open ◽

10.1136/bmjopen-2017-018247 ◽

2017 ◽

Vol 7 (12) ◽

pp. e018247 ◽

Cited By ~ 6

Author(s):

Elana Commisso ◽

Katherine S McGilton ◽

Ana Patricia Ayala ◽

Melissa, K Andrew ◽

Howard Bergman ◽

...

Keyword(s):

Older Adults ◽

Family Caregivers ◽

Scoping Review ◽

Chronic Conditions ◽

Social Care ◽

Grey Literature ◽

Well Being ◽

Multiple Chronic Conditions ◽

Care Needs ◽

Health And Social Care

IntroductionPeople are living longer; however, they are not necessarily experiencing good health and well-being as they age. Many older adults live with multiple chronic conditions (MCC), and complex health issues, which adversely affect their day-to-day functioning and overall quality of life. As a result, they frequently rely on the support of friend and/or family caregivers. Caregivers of older adults with MCC often face challenges to their own well-being and also require support. Currently, not enough is known about the health and social care needs of older adults with MCC and the needs of their caregivers or how best to identify and meet these needs. This study will examine and synthesise the literature on the needs of older adults with MCC and those of their caregivers, and identify gaps in evidence and directions for further research.Methods and analysisWe will conduct a scoping review of the peer-reviewed and grey literature using the updated Arksey and O’Malley framework. The literature will be identified using a multidatabase and grey literature search strategy developed by a health sciences librarian. Papers, reports and other materials addressing the health and social care needs of older adults and their friend/family caregivers will be included. Search results will be screened, independently, by two reviewers, and data will be abstracted from included literature and charted in duplicate.Ethics and disseminationThis scoping review does not require ethics approval. We anticipate that study findings will inform novel strategies for identifying and ascertaining the health and social care needs of older adults living with MCC and those of their caregivers. Working with knowledge-user members of our team, we will prepare materials and presentations to disseminate findings to relevant stakeholder and end-user groups at local, national and international levels. We will also publish our findings in a peer-reviewed journal.

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A Web-Based Intervention to Help Caregivers of Older Adults With Dementia and Multiple Chronic Conditions: Qualitative Study

JMIR Aging ◽

10.2196/aging.8475 ◽

2018 ◽

Vol 1 (1) ◽

pp. e2 ◽

Cited By ~ 11

Author(s):

Jenny Ploeg ◽

Carrie McAiney ◽

Wendy Duggleby ◽

Tracey Chambers ◽

Annie Lam ◽

...

Keyword(s):

Older Adults ◽

Qualitative Study ◽

Chronic Conditions ◽

Multiple Chronic Conditions ◽

Web Based

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The ACHRU-CPP versus usual care for older adults with type-2 diabetes and multiple chronic conditions and their family caregivers: study protocol for a randomized controlled trial

Trials ◽

10.1186/s13063-017-1795-9 ◽

2017 ◽

Vol 18 (1) ◽

Cited By ~ 3

Author(s):

Maureen Markle-Reid ◽

Jenny Ploeg ◽

Kimberly D. Fraser ◽

Kathryn Ann Fisher ◽

Noori Akhtar-Danesh ◽

...

Keyword(s):

Type 2 Diabetes ◽

Older Adults ◽

Randomized Controlled Trial ◽

Usual Care ◽

Family Caregivers ◽

Chronic Conditions ◽

Controlled Trial ◽

Multiple Chronic Conditions ◽

Randomized Controlled

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Using the Technology Acceptance Model to Explore User Experience, Intent to Use, and Use Behavior of a Patient Portal Among Older Adults With Multiple Chronic Conditions: Descriptive Qualitative Study

Journal of Medical Internet Research ◽

10.2196/11604 ◽

2019 ◽

Vol 21 (4) ◽

pp. e11604 ◽

Cited By ~ 28

Author(s):

Jennifer Dickman Portz ◽

Elizabeth A Bayliss ◽

Sheana Bull ◽

Rebecca S Boxer ◽

David B Bekelman ◽

...

Keyword(s):

Older Adults ◽

Qualitative Study ◽

Technology Acceptance ◽

Technology Acceptance Model ◽

Chronic Conditions ◽

Multiple Chronic Conditions ◽

Patient Portal ◽

Intent To Use ◽

Acceptance Model ◽

Use Behavior

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Experiences of community-dwelling older adults living with multiple chronic conditions: a qualitative study

BMJ Open ◽

10.1136/bmjopen-2018-023345 ◽

2019 ◽

Vol 9 (3) ◽

pp. e023345 ◽

Cited By ~ 8

Author(s):

Jenny Ploeg ◽

Marta Canesi ◽

Kimberly D Fraser ◽

Carrie McAiney ◽

Sharon Kaasalainen ◽

...

Keyword(s):

Older Adults ◽

Qualitative Study ◽

Social Services ◽

Chronic Conditions ◽

Healthcare Services ◽

Community Dwelling ◽

Community Living ◽

Multiple Chronic Conditions ◽

Interpretive Description ◽

Management Options

ObjectivesThe aim of the study was to understand the experiences of living with multiple chronic conditions (MCC) from the perspective of community-living older adults with MCC.DesignA qualitative study using an interpretive description approach.SettingParticipants were recruited from southern Ontario, Canada.Participants21 community-living, older adults (≥65 years) with an average of 7.4 chronic conditions including one of diabetes, dementia or stroke.MethodsData were collected through digitally-recorded, in-depth, semi-structured in-person interviews. Interview transcripts were analysed and coded using Thorne’s interpretive description approach.ResultsFive themes were identified representing older adults' experiences of living with MCC: (a) trying to stay healthy while living with MCC, (b) depending on family caregivers for support with just about everything, (c) paying the high costs of living with MCC, (d) making healthcare decisions by proxy and (e) receiving healthcare services that do not address the complex needs of persons living with MCC.ConclusionsThe experience of living with MCC in the community was complex and multi-faceted. The need for a person-centred and family-centred approach to care in the community, which includes the coordination of health and social services that are tailored to the needs of older adults and their informal caregivers, was underscored. Such an approach would facilitate improved information-sharing and discussion of care management options between health professionals and their patients, enable older adults with MCC to actively engage in priority-setting and decision-making and may result in improved health and quality of life for older adults with MCC.

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