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

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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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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Managing multiple chronic conditions in the community: a Canadian qualitative study of the experiences of older adults, family caregivers and healthcare providers

BMC Geriatrics ◽

10.1186/s12877-017-0431-6 ◽

2017 ◽

Vol 17 (1) ◽

Cited By ~ 47

Author(s):

Jenny Ploeg ◽

Nancy Matthew-Maich ◽

Kimberly Fraser ◽

Sinéad Dufour ◽

Carrie McAiney ◽

...

Keyword(s):

Older Adults ◽

Qualitative Study ◽

Family Caregivers ◽

Chronic Conditions ◽

Healthcare Providers ◽

Multiple Chronic Conditions

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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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ProACT - A Digital Platform to Support Self-Management of Multiple Chronic Conditions: Findings in Relation to Engagement during a one-year Proof-of-Concept Trial (Preprint)

10.2196/preprints.22672 ◽

2020 ◽

Author(s):

Julie Doyle ◽

Emma Murphy ◽

Shane Gavin ◽

Alessandra Pascale ◽

Stephane Deparis ◽

...

Keyword(s):

Older Adults ◽

Chronic Conditions ◽

Digital Health ◽

Self Management ◽

Multiple Chronic Conditions ◽

User Engagement ◽

Proof Of Concept ◽

Structured Interviews ◽

Health Technologies ◽

Care Approach

BACKGROUND Self-management, a core activity for older adults living with multiple chronic conditions (multimorbidity), is challenging, requiring the person to engage in multiple tasks such as symptom monitoring, recognition of exacerbations, medication adherence and inter-stakeholder communication. A digital, integrated care approach is a critical part of the solution, however, there is a dearth of literature on this topic. Furthermore, there is little research on older adults’ acceptability, usage and experiences of engaging with digital health technologies, particularly over long periods of time. OBJECTIVE The objectives were to (1) co-design and develop a digital health platform, called ProACT, to facilitate older adults self-managing multimorbidity, with support from their care network (CN); (2) evaluate end user engagement and experiences with the platform through a 12-month trial. METHODS The ProACT digital health platfrom is presented. The platform was evaluated in a year-long proof-of-concept (PoC) action research trial with 120 older persons with multimorbidity (PwMs) in Ireland and Belgium. Alongside the technology, participants had access to a clinical triage service responding to symptom alerts, and a technical helpdesk. Interactions with the platform during the PoC trial were logged to determine engagement, semi-structured interviews were conducted with participants and analysed using inductive thematic analysis methods, while usability and user burden were examined using validated questionnaires. RESULTS This article presents the ProACT platform and its components, along with findings on engagement with the platform and its usability. Of the 120 participants who took part, 24 withdrew before the end of the study while three passed away. The remaining 93 participants actively used the platform until the end of the trial, on average taking two or three health readings daily over the course of the trial, in Ireland and Belgium respectively. Participants reported ProACT to be usable and of low burden. Findings from interviews outline that participants experienced multiple benefits as a result of using ProACT, including improved self-management, improved health and wellbeing and support from the triage service. For those who withdrew, barriers to engagement were poor health and frustration when technology didn’t work as expected. CONCLUSIONS This is the first study to present findings from a longitudinal study of older adults using digital health technology to self-manage multiple chronic conditions. Our findings show that older adults sustained engagement with the technology and found it usable. Potential reasons for this include a strong focus on user-centred design and engagement throughout the project lifecycle, resulting in a platform that met user needs, as well as the integration of behavior change techniques and personal analytics into the platform. The provision of triage and technical support services alongside the platform during the trial were also important facilitators of engagement. INTERNATIONAL REGISTERED REPORT RR2-10.2196/preprints.22125

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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

International Journal for Equity in Health ◽

10.1186/s12939-016-0328-6 ◽

2016 ◽

Vol 15 (1) ◽

Cited By ~ 25

Author(s):

Allison Williams ◽

Bharati Sethi ◽

Wendy Duggleby ◽

Jenny Ploeg ◽

Maureen Markle-Reid ◽

...

Keyword(s):

Older Adults ◽

Qualitative Study ◽

Family Caregivers ◽

Chronic Conditions ◽

Multiple Chronic Conditions ◽

Social Location

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Timing of onset and self-management of multiple chronic conditions: A qualitative examination taking a lifespan perspective

Chronic Illness ◽

10.1177/1742395318792066 ◽

2018 ◽

Vol 16 (3) ◽

pp. 173-189 ◽

Cited By ~ 2

Author(s):

Allison R Heid ◽

Andrew R Gerber ◽

David S Kim ◽

Stefan Gillen ◽

Seran Schug ◽

...

Keyword(s):

Older Adults ◽

Social Life ◽

Chronic Conditions ◽

Self Management ◽

Multiple Chronic Conditions ◽

Older Individuals ◽

Structured Interviews ◽

Targeted Interventions ◽

Timing Of Onset ◽

Management Behaviors

Objectives Over two-thirds of older individuals live with multiple chronic conditions, yet chronic diseases are often studied in silos. Taking a lifespan approach to understanding the development of multiple chronic conditions in the older population helps to further elucidate opportunities for targeted interventions that address the complexities of multiple chronic conditions. Methods Semi-structured interviews were conducted with 38 older adults (age 64+) diagnosed with at least two chronic health conditions. Content analysis was used to build understanding of how older adults discuss the timing of diagnoses and subsequent self-management of multiple chronic conditions. Results Findings highlight the complex process by which illnesses unfold in the context of individuals’ lives and the subsequent engagement and/or disengagement in self-management behaviors. Two primary themes were evident regarding timing of illnesses: illnesses were experienced within the context of social life events and/or health events, and illnesses were not predominantly seen as connected to one another by patients. Self-management behaviors were described in response to onset of each illness. Discussion Findings provide insight into how older adults understand their experience of multiple chronic conditions and change in self-management behaviors over time. In order for practitioners to ignite behavioral changes, a person’s history and life experiences must be considered.

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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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Beliefs about Polypharmacy among Home-Dwelling Older Adults Living with Multiple Chronic Conditions, Informal Caregivers and Healthcare Professionals: A Qualitative Study

Healthcare ◽

10.3390/healthcare9091204 ◽

2021 ◽

Vol 9 (9) ◽

pp. 1204

Author(s):

Marion Bieri ◽

María del Río Carral ◽

Marie Santiago-Delefosse ◽

Giorgia Miano ◽

Fanny Rosset ◽

...

Keyword(s):

Older Adults ◽

Medication Adherence ◽

Chronic Conditions ◽

Healthcare Professionals ◽

Methodological Approach ◽

Informal Caregivers ◽

Multiple Chronic Conditions ◽

Structured Interviews ◽

Improve Medication Adherence ◽

Treatment Information

Although home-dwelling older adults are frequently assisted with polypharmacy management by their informal caregivers, they can still face medication-related problems. Identifying older adults’ and their informal caregivers’ beliefs about medication is a gateway to understanding and improving medication adherence. This study aimed to analyse beliefs about polypharmacy among home-dwelling older adults with multiple chronic conditions and their informal caregivers, focusing on their daily medication practices. Semi-structured interviews were conducted with 28 older adults, 17 informal caregivers, but also 13 healthcare professionals. Based on an inductive methodological approach, data were analysed using thematic content analysis. Interviews revealed the different attitudes adopted by older adults and their informal caregivers in relation to the treatment information provided by healthcare professionals. A variety of beliefs were identified and linked to medication adherence by examining daily medication practices. Polypharmacy was experienced as a habit but also an obligation, highlighting some of the strategies and negotiations underlying medication use at home. Collecting viewpoints from multiple stakeholders is an innovative way of accessing and analysing beliefs about polypharmacy. Daily medication practices provided information about medication beliefs and may contribute to developing targeted professional interventions that improve medication adherence.

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Facilitators and Barriers of Managing Patients with Multiple Chronic Conditions in the Community: A Qualitative Study

10.21203/rs.2.15520/v4 ◽

2020 ◽

Author(s):

Kah Mun Foo ◽

Meena Sundram ◽

Helena Legido-Quigley

Keyword(s):

Qualitative Study ◽

Chronic Conditions ◽

Resource Constraints ◽

Healthcare Providers ◽

Policy Formulation ◽

Care Quality ◽

Self Management ◽

Multiple Chronic Conditions ◽

Structured Interviews ◽

Facilitators And Barriers

Abstract Background: Approximately one-third of all adults worldwide are diagnosed with multiple chronic conditions (MCCs). The literature has identified several challenges facing providers and patients coping with managing MCCs in the community, yet few studies have considered their viewpoints in combination. A qualitative study involving healthcare providers and users was thus conducted to examine facilitators and barriers of managing patients with MCCs in the community in Singapore.Methods: This study involves 26 semi-structured interviews with 10 physicians, 2 caregivers and 14 patients seeking treatment in the polyclinics that provide subsidised primary care services. Topic guides were developed with reference to the literature review, Chronic Care Model (CCM) and framework for patient-centred access to healthcare.Results: Despite the perceived affordability and availability of the support system, some patients still encountered financial difficulties in managing care. These include inadequacy of the nation-wide medical savings scheme to cover outpatient treatment and medications. Half of healthcare users did not know where to seek help. While patients could access comprehensive services in polyclinics, those who did not visit the clinics might not receive timely care. Furthermore, patients reported long consultation waiting time.Physicians were able to propose and drive quality improvement projects to improve care quality. However, there were challenges to delivering safe and quality care with limited consultation duration due to the need to manage high patient load and waiting time, inadequate communication with specialists to coordinate care, and resource constraints in managing complex patients.Although providers could equip patients with self-management and lifestyle-related guidelines, patients’ actions are influenced by multiple factors, including work requirements, beliefs and environment.Conclusions: There were barriers on care access, delivery and self-management. It is crucial to adopt a whole-of-society approach involving individuals, community, institutions and policymakers to improve and support MCC management. This study has also highlighted the importance of considering the different viewpoints of healthcare providers and users in policy formulation and community care planning.

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