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E-mental health interventions for informal caregivers: Development with a focus on implementation
Uppsala University, Disciplinary Domain of Medicine and Pharmacy, Faculty of Medicine, Department of Women's and Children's Health, Healthcare Sciences and e-Health.ORCID iD: 0000-0001-5539-974x
2023 (English)Doctoral thesis, comprehensive summary (Other academic)
Description
Abstract [en]

The four studies within this thesis contributed to the identification of key factors to be considered when designing and implementing e-mental health (e-MH) interventions for informal caregivers. 

Study I was a mixed-methods systematic review to examine factors related to the effectiveness and implementation of e-MH interventions for informal caregivers of adults with chronic diseases. A thematic synthesis with deductive coding using the Consolidated Framework for Implementation Research (CFIR) identified 152 implementation barriers and facilitators. Barriers and facilitators primarily related to intervention and user characteristics. Exploration of barriers and facilitators related to the implementation setting or wider context was limited.

Study II was a cross-sectional survey to examine contextual factors related to informal caregivers (e.g. intervention preferences, caregiving situation) to inform the development of a cognitive behavioural therapy (CBT) self-help intervention to support the mental health of informal caregivers of people living with chronic kidney disease (CKD). The majority of participants were caring for a male spouse or partner living with CKD, and over half were experiencing at least mild depressive symptoms. Informal caregivers reported preferences for CBT self-help interventions to be delivered via the internet, a workbook, or individually in-person, with additional support provided in-person or via email by a trained professional at a non-profit organisation.

Study III was a qualitative study to explore the perspectives of professionals (i.e. potential implementers) anticipated to play key roles in the future implementation of an e-MH intervention for informal caregivers of people living with CKD regarding the intervention’s design, delivery, and implementation. Manifest content analysis with primarily deductive coding using the CFIR led to identification of 29 generic categories representing implementation determinants. Potential implementers considered an e-MH intervention as fitting within some existing healthcare delivery models and work routines, however, capacity to be involved with intervention delivery was low. Equitable support access was important to ensure intervention acceptability.

Study IV was a qualitative study to explore informal caregivers’ experiences of accessing and receiving support while caring for someone living with CKD. Reflexive thematic analysis generated three themes: (1) “Systems seem to get in the way” – challenges within support systems, describing challenges encountered when navigating complex systems; (2) Relying on yourself, describing how informal caregivers relied on their own skills and networks to find support; and (3) Support systems can “take the pressure off”, describing how support systems were perceived as supportive when empathetic and reliable. 

Place, publisher, year, edition, pages
Uppsala: Acta Universitatis Upsaliensis, 2023. , p. 81
Series
Digital Comprehensive Summaries of Uppsala Dissertations from the Faculty of Medicine, ISSN 1651-6206 ; 1977
Keywords [en]
informal caregiver, e-mental health, mental health, implementation, chronic kidney disease
National Category
Health Sciences Psychology
Research subject
Health Care Research; Psychology; Medical Science
Identifiers
URN: urn:nbn:se:uu:diva-512372ISBN: 978-91-513-1908-7 (print)OAI: oai:DiVA.org:uu-512372DiVA, id: diva2:1801077
Public defence
2023-11-21, Sal IV, Universitetshuset, Biskopsgatan 3, Uppsala, 09:15 (English)
Opponent
Supervisors
Available from: 2023-10-30 Created: 2023-09-29 Last updated: 2023-10-30
List of papers
1. Implementation of e-mental health interventions for informal caregivers of adults with chronic diseases: a protocol for a mixed-methods systematic review with a qualitative comparative analysis
Open this publication in new window or tab >>Implementation of e-mental health interventions for informal caregivers of adults with chronic diseases: a protocol for a mixed-methods systematic review with a qualitative comparative analysis
2020 (English)In: BMJ Open, E-ISSN 2044-6055, Vol. 10, no 6, article id e035406Article, review/survey (Refereed) Published
Abstract [en]

INTRODUCTION: Informal caregivers provide the majority of care to individuals with chronic health conditions, benefiting the care recipient and reducing use of formal care services. However, providing informal care negatively impacts the mental health of many caregivers. E-mental health interventions have emerged as a way to provide accessible mental healthcare to caregivers. Much attention has been given to reviewing the effectiveness and efficacy of such interventions, however, factors related to implementation have received less consideration. Therefore, this mixed-methods systematic review will aim to examine factors associated with the effectiveness and implementation of e-mental health interventions for caregivers.

METHODS AND ANALYSIS: Eligible studies published since 1 January 2007 will be searched for in several electronic databases (CINAHL Plus with Full Text, the Cochrane Library, EMBASE, PsycINFO, PubMed and Web of Science), clinical trial registries and OpenGrey, with all screening steps conducted by two independent reviewers. Studies will be included if they focus on the implementation or effectiveness of e-mental health interventions designed for informal adult caregivers of adults with cancer, heart disease, stroke, diabetes, dementia or chronic obstructive pulmonary disease. Pragmatic randomised controlled trials quantitatively reporting on caregiver anxiety, depression, psychological distress or stress will be used for a qualitative comparative analysis to identify combinations of conditions that result in effective interventions. Qualitative and quantitative data on implementation of e-mental health interventions for caregivers will be integrated in a thematic synthesis to identify barriers and facilitators to implementation. These results will inform future development and implementation planning of e-mental health interventions for caregivers.

ETHICS AND DISSEMINATION: Ethical approval is not required for this study as no primary data will be collected. Results will be disseminated in the form of a scientific publication and presentations at academic conferences and plain language summaries for various stakeholders.

PROSPERO REGISTRATION NUMBER: CRD42020155727.

Keywords
World Wide Web technology, anxiety disorders, depression & mood disorders, mental health, primary care
National Category
Psychology Other Health Sciences Nursing
Research subject
Psychology; Health Care Research
Identifiers
urn:nbn:se:uu:diva-414219 (URN)10.1136/bmjopen-2019-035406 (DOI)000561434500031 ()32565461 (PubMedID)
Funder
EU, Horizon 2020, 814072
Available from: 2020-06-24 Created: 2020-06-24 Last updated: 2023-09-29Bibliographically approved
2. Implementation of e–Mental Health Interventions for Informal Caregivers of Adults With Chronic Diseases: Mixed Methods Systematic Review With a Qualitative Comparative Analysis and Thematic Synthesis
Open this publication in new window or tab >>Implementation of e–Mental Health Interventions for Informal Caregivers of Adults With Chronic Diseases: Mixed Methods Systematic Review With a Qualitative Comparative Analysis and Thematic Synthesis
Show others...
2022 (English)In: JMIR Mental Health, E-ISSN 2368-7959, Vol. 9, no 11, article id e41891Article, review/survey (Refereed) Published
Abstract [en]

Background: Informal caregivers commonly experience mental health difficulties related to their caregiving role. e–Mental health interventions provide mental health support in a format that may be more accessible to informal caregivers. However, e–mental health interventions are seldom implemented in real-world practice.

Objective: This mixed methods systematic review aimed to examine factors associated with the effectiveness and implementation of e–mental health interventions for informal caregivers of adults with chronic diseases. To achieve this aim, two approaches were adopted: combinations of implementation and intervention characteristics sufficient for intervention effectiveness were explored using qualitative comparative analysis, and barriers to and facilitators of implementation of e–mental health interventions for informal caregivers were explored using thematic synthesis.

Methods: We identified relevant studies published from January 1, 2007, to July 6, 2022, by systematically searching 6 electronic databases and various secondary search strategies. Included studies reported on the effectiveness or implementation of e–mental health interventions for informal caregivers of adults with cancer, chronic obstructive pulmonary disease, dementia, diabetes, heart disease, or stroke. Randomized controlled trials reporting on caregivers’ mental health outcomes were included in a crisp-set qualitative comparative analysis. We assessed randomized controlled trials for bias using the Risk of Bias 2.0 tool, and we assessed how pragmatic or explanatory their trial design was using the Pragmatic Explanatory Continuum Indicator Summary 2 tool. Studies of any design reporting on implementation were included in a thematic synthesis using the Consolidated Framework for Implementation Research to identify barriers to and facilitators of implementation.

Results: Overall, 53 reports, representing 29 interventions, were included in the review. Most interventions (27/29, 93%) focused on informal cancer or dementia caregivers. In total, 14 reports were included in the qualitative comparative analysis, exploring conditions including the presence of peer or professional support and key persuasive design features. Low consistency and coverage prevented the determination of condition sets sufficient for intervention effectiveness. Overall, 44 reports were included in the thematic synthesis, and 152 barriers and facilitators were identified, with the majority related to the intervention and individual characteristic domains of the Consolidated Framework for Implementation Research. Implementation barriers and facilitators in the inner setting (eg, organizational culture) and outer setting (eg, external policies and resources) domains were largely unexplored.

Conclusions: e–Mental health interventions for informal caregivers tend to be well-designed, with several barriers to and facilitators of implementation identified related to the intervention and individual user characteristics. Future work should focus on exploring the views of stakeholders involved in implementation to determine barriers to and facilitators of implementing e–mental health interventions for informal caregivers, focusing on inner and outer setting barriers and facilitators.

Trial Registration: PROSPERO (International Prospective Register of Systematic Reviews) CRD42020155727; https://www.crd.york.ac.uk/prospero/display_record.php?ID=CRD42020155727

Place, publisher, year, edition, pages
JMIR PublicationsJMIR Publications Inc., 2022
Keywords
informal caregivers, e-mental health, implementation, chronic diseases, systematic review
National Category
Health Sciences Psychology
Research subject
Health Care Research; Psychology
Identifiers
urn:nbn:se:uu:diva-489486 (URN)10.2196/41891 (DOI)
Funder
EU, Horizon 2020, 814072Swedish Research Council, 2009–1093
Available from: 2022-11-30 Created: 2022-11-30 Last updated: 2024-12-03Bibliographically approved
3. Cognitive behavioural therapy self-help intervention preferences among informal caregivers of adults with chronic kidney disease: an online cross-sectional survey
Open this publication in new window or tab >>Cognitive behavioural therapy self-help intervention preferences among informal caregivers of adults with chronic kidney disease: an online cross-sectional survey
Show others...
2023 (English)In: BMC Nephrology, E-ISSN 1471-2369, Vol. 24, no 1, article id 4Article in journal (Refereed) Published
Abstract [en]

Background: Informal caregivers (i.e. family and friends) provide essential support to people with chronic kidney disease (CKD). Many informal caregivers experience mental health problems such as anxiety and depression due to the caregiving role, and commonly have unmet psychological support needs. One potential solution is cognitive behavioural therapy (CBT) self-help interventions that are less reliant on extensive involvement of healthcare professionals, which may increase access. Within the intervention development phase of the MRC framework, the study's primary objective was to examine informal caregivers' self-help intervention preferences (e.g. delivery format, content). Secondary objectives were to describe the informal caregiver's situation (e.g. type of care activities) and mental health (symptoms of depression, anxiety, and stress).

Methods: An online cross-sectional survey conducted in the United Kingdom. Informal caregivers of adults living with CKD were recruited via social media, websites, newsletters, magazine articles, a podcast episode, and paid Facebook advertisements. The survey examined: informal caregiver characteristics; care recipient characteristics; self-help intervention preferences; and informal caregiver's mental health using the DASS-21. Data were analysed using descriptive statistics.

Results: Sixty-five informal caregivers participated. The majority (85%) were female, caring for a male (77%) spouse/partner (74%). Responses indicated 58% of informal caregivers were experiencing at least mild depression. In total, 48% indicated they were likely to use a CBT self-help intervention, preferring an intervention provided via internet (e.g. website) (64%), workbook (56%), or individually in-person (54%). Regarding content, interventions should cover a wide range of topics including living with CKD, support services, informal caregiver's physical health, and diet. Overall, 48% reported a preference for a supported intervention, with support delivered in-person or via email by a trained professional at a community organisation.

Conclusions: Results suggest CBT self-help interventions may be an acceptable way to provide psychological support to informal caregivers, however the study is limited by the small sample size. A wide range of intervention preferences were identified indicating a need to tailor intervention content and delivery to enhance acceptability and engagement. Results will inform development of a CBT self-help intervention for informal caregivers of people with CKD.

Place, publisher, year, edition, pages
BioMed Central (BMC), 2023
Keywords
Chronic kidney disease, Cognitive behavioural therapy, Informal caregiver, Intervention preferences, Mental health, Online survey, Self-help
National Category
Psychology Health Sciences
Research subject
Health Care Research; Psychology
Identifiers
urn:nbn:se:uu:diva-492636 (URN)10.1186/s12882-022-03052-7 (DOI)000908417900002 ()36600229 (PubMedID)
Funder
EU, Horizon 2020, 814072Swedish Research Council, 2009–1093Uppsala University
Available from: 2023-01-09 Created: 2023-01-09 Last updated: 2024-07-04Bibliographically approved
4. Potential Implementers’ Perspectives on the Development and Implementation of an e–Mental Health Intervention for Caregivers of Adults With Chronic Kidney Disease: Qualitative Interview Study
Open this publication in new window or tab >>Potential Implementers’ Perspectives on the Development and Implementation of an e–Mental Health Intervention for Caregivers of Adults With Chronic Kidney Disease: Qualitative Interview Study
Show others...
2023 (English)In: JMIR Human Factors, E-ISSN 2292-9495, Vol. 10, article id e51461Article in journal (Refereed) Published
Abstract [en]

Background: e–Mental health interventions can improve access to mental health support for caregivers of people living with chronic kidney disease (CKD). However, implementation challenges often prevent effective interventions from being put into practice. To develop an e–mental health intervention for caregivers of people living with CKD that is optimized for future implementation, it is important to engage professionals that may endorse or deliver the intervention (ie, potential implementers) during intervention development.

Objective: This study aims to explore the perspectives of potential implementers working in kidney care, in mental health care, or at nonprofit organizations regarding the design and implementation of an e–mental health intervention for caregivers of people living with CKD.

Methods: Potential implementers (N=18) were recruited via National Health Service Trusts, email, and social media advertisements to participate in semistructured video interviews. Interview questions were informed by the Consolidated Framework for Implementation Research (CFIR). Data were analyzed using a deductive analysis approach using the CFIR, with inductive coding applied to relevant data not captured by the framework.

Results: A total of 29 generic categories, related to 17 CFIR constructs, were identified. The perceived fit between the intervention and implementation context (ie, existing service delivery models and work routines) and existing social networks among potential implementers were perceived as important factors in enhancing implementation potential. However, a need for capacity building among potential implementers to create systems to support the identification and referral of caregivers to an e–mental health intervention was identified. Equity concerns were raised regarding the intervention, highlighting the importance of incorporating an equity lens during intervention design to enhance accessibility and adoption.

Conclusions: Potential implementers provided valuable insights into key design and implementation factors to help inform the development of an e–mental health intervention for caregivers of people living with CKD. Incorporating their feedback can help ensure the intervention is acceptable and inform the selection of future implementation strategies to enhance the implementation potential of the intervention. Potential implementers should continue to be engaged throughout intervention development.

Place, publisher, year, edition, pages
JMIR Publications, 2023
Keywords
healthcare professional, implementation, informal caregiver, chronic kidney disease, e-mental health, Consolidated Framework for Implementation Research
National Category
Health Sciences Psychology
Research subject
Health Care Research; Psychology
Identifiers
urn:nbn:se:uu:diva-512343 (URN)10.2196/51461 (DOI)001114959100001 ()37792676 (PubMedID)
Funder
Swedish Research Council, 2009–1093EU, Horizon 2020, 814072
Available from: 2023-09-25 Created: 2023-09-25 Last updated: 2024-06-17Bibliographically approved
5. "Systems seem to get in the way": a qualitative study exploring experiences of accessing and receiving support among informal caregivers of people living with chronic kidney disease
Open this publication in new window or tab >>"Systems seem to get in the way": a qualitative study exploring experiences of accessing and receiving support among informal caregivers of people living with chronic kidney disease
Show others...
2024 (English)In: BMC Nephrology, E-ISSN 1471-2369, Vol. 25, no 1, article id 7Article in journal (Refereed) Published
Abstract [en]

Background: The well-being of informal caregivers of people living with chronic kidney disease is influenced by their experiences with support, however, few studies have focused on exploring these experiences. This study aimed to explore informal caregivers' experiences accessing and receiving support while caring for someone living with chronic kidney disease.

Methods: Informal caregivers of people living with chronic kidney disease (n = 13) in the United Kingdom were primarily recruited via community organisations and social media adverts to participate in semi-structured interviews. Interviews explored support needs, experiences of receiving support from different groups (e.g. healthcare professionals, family/friends), and barriers and facilitators to accessing support. Support was understood as including emotional, practical, and informational support. Data were analysed using reflexive thematic analysis.

Results: Three themes were generated: (1) "Systems seem to get in the way" - challenges within support systems, illustrating the challenges informal caregivers encountered when navigating complex support systems; (2) Relying on yourself, describing how informal caregivers leveraged their existing skills and networks to access support independently, while recognising the limitations of having to rely on yourself to find support; and (3) Support systems can "take the pressure off", showing how support systems were able to help informal caregivers cope with the challenges they experienced if certain conditions were met.

Conclusions: In response to the challenges informal caregivers experienced when seeking support, improvements are needed to better consider informal caregiver needs within healthcare systems, and to develop interventions tailored to informal caregiver needs and context. Within the healthcare system, informal caregivers may benefit from system navigation support and better integration within healthcare teams to ensure their informational support needs are met. New interventions developed to support informal caregivers should fit within their existing support systems and incorporate the qualities of support, such as empathy, that were valued. Additionally, use of an equity framework and user-centered design approaches during intervention development could help ensure interventions are accessible and acceptable.

Place, publisher, year, edition, pages
BioMed Central (BMC), 2024
Keywords
informal caregiver, chronic kidney disease, support, unmet needs, social networks, thematic analysis
National Category
Nursing Health Care Service and Management, Health Policy and Services and Health Economy
Research subject
Health Care Research; Psychology
Identifiers
urn:nbn:se:uu:diva-512211 (URN)10.1186/s12882-023-03444-3 (DOI)001136271300002 ()38172754 (PubMedID)
Funder
Swedish Research Council, 2009–1093EU, Horizon 2020, 814072U‐Care: Better Psychosocial Care at Lower Cost? Evidence-based assessment and Psychosocial Care via Internet, a Swedish ExampleUppsala University
Available from: 2023-09-22 Created: 2023-09-22 Last updated: 2024-07-04Bibliographically approved

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