| 1. |
- Blomberg, Oscar, et al.
(författare)
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Adaptation of a guided low-intensity behavioral activation intervention for people with dementia in Sweden : a qualitative study exploring the needs and preferences of key stakeholders
- 2024
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Ingår i: BMC Geriatrics. - : Springer. - 1471-2318. ; 24:113
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Tidskriftsartikel (refereegranskat)abstract
- BackgroundDespite depression being prevalent in people with dementia, contributing to negative health outcomes and placing increased burden on individuals and family members, access to psychological interventions is limited. A potential solution is guided low-intensity behavioral activation, supported by informal caregivers and guided by healthcare professionals. However, it is necessary to adapt interventions to meet the needs and preferences of key stakeholders to enhance acceptability and relevance. Study objectives were to: (1) explore needs and preferences concerning the content and delivery model of the guided low-intensity behavioral activation intervention; and (2) adapt the intervention to ensure cultural appropriateness, relevancy, and acceptability to people with dementia and their caregivers in Sweden.MethodsSemi-structured interviews and focus group discussions were conducted with key stakeholders, including healthcare professionals (n = 18), community stakeholders (n = 7), people with dementia (n = 8), and informal caregivers (n = 19). A draft of the written low-intensity behavioral activation intervention and a description of the proposed intervention delivery model were provided to participants. Open-ended questions explored the perceived relevance of the intervention, alongside needs and preferences concerning content and delivery. A manifest content analysis approach was adopted.ResultsContent analysis resulted in three categories: Content, Delivery procedures, and Illness trajectory. Results highlighted a need to consider the intervention Content via increased cultural adaptation to the Swedish context, and increasing the inclusiveness of intervention content. Delivery procedures were identified as needing to be flexible given the unpredictable nature of caring for people with dementia, with the provision of additional guidance to informal caregivers supporting the intervention. Illness trajectory was viewed as essential to consider, with the intervention regarded as suitable for those early in the dementia trajectory, alongside a need to reduce workbook text to minimize burden given dementia symptomology.ConclusionsThe intervention and proposed delivery model were generally well received by all stakeholders. We were able to identify key adaptations to enhance cultural appropriateness, relevancy, and acceptability for a currently neglected population. Results will inform a feasibility study to explore the feasibility and acceptability of the intervention and study procedures to inform the design of a future superiority randomized controlled trial.
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| 2. |
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| 3. |
- Coumoundouros, Chelsea, et al.
(författare)
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Cognitive behavioural therapy self-help intervention preferences among informal caregivers of adults with chronic kidney disease : an online cross-sectional survey
- 2023
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Ingår i: BMC Nephrology. - : BioMed Central (BMC). - 1471-2369. ; 24:1
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 4. |
- Coumoundouros, Chelsea, et al.
(författare)
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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
- 2023
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Ingår i: JMIR Human Factors. - : JMIR Publications. - 2292-9495. ; 10
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 5. |
- Coumoundouros, Chelsea, et al.
(författare)
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Self-help intervention preferences among informal caregivers of adults with kidney conditions: an online cross-sectional survey
- 2022
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Konferensbidrag (refereegranskat)abstract
- Introduction: Informal caregivers provide important help and support to people with kidney conditions. However, informal caregivers often experience common mental health difficulties, such as depression and anxiety, while in the caregiving role. Informal caregiver’s mental health negatively impacts their own wellbeing, and can also impact the wellbeing of the person they care for. One potential solution to address informal caregivers’ need for psychological support is the development of cognitive behavioural therapy self-help (CBT-SH) interventions. CBT-SH interventions can increase access to psychological support as they are less reliant on extensive involvement of healthcare professionals, and can be delivered in a variety of formats. However, there is a lack of research exploring CBT-SH intervention preferences among informal caregivers of adults with kidney conditions. Following the development phrase of the Medical Research Council framework for developing and evaluating complex interventions, we aim to explore CBT-SH intervention preferences among informal caregivers of adults with kidney conditions to inform the development of an intervention that is acceptable to users and optimised for implementation into routine practice. Methods: Informal caregivers’ self-help intervention preferences were explored using an online cross-sectional survey. Adults living in the UK who were providing unpaid care to an adult with a kidney condition were eligible to participate. Participants were recruited via social media, websites, newsletters, and/or magazines of non-profit organisations for people with kidney conditions and/or informal caregivers. The survey contained questions related to (1) characteristics of the informal caregiver; (2) characteristics of the person with a kidney condition; (3) self-help intervention preferences (e.g. content, delivery format); and (4) informal caregiver’s mental health. Study materials were reviewed by two public contributors, informing the appearance of recruitment materials, and content of the participant information sheet and survey. Quantitative data analysis using descriptive statistics will be used to analyse survey responses. Results: Participants are currently being recruited, with data collection projected to end in May 2022. We aim to recruit approximately 150 participants, with 15 participants recruited as of mid-February 2022. Preliminary results describing participants’ sociodemographic background, caregiving situation (e.g. condition of the person they care for, relationship to the person they care for), and current mental health status will be presented. Intervention content and delivery (e.g. intervention format; where, when, and by whom the intervention is delivered) preferences identified as most important by informal caregivers will be reported. Findings will be used to guide development of a CBT-SH intervention for informal caregivers of people with kidney conditions and will inform upcoming qualitative research with informal caregivers and health and social care professionals to continue the intervention development process. Discussion: To our knowledge, this is the first study focused on the development of a CBT-SH intervention to support informal caregivers of people with kidney conditions. By incorporating informal caregiver’s intervention preferences during intervention development, we aim to ensure the intervention meets their needs and preferences, and will be acceptable when implemented into practice. Results reflect the first step towards the development of a CBT-SH intervention for informal caregivers of people with kidney conditions.
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| 6. |
- Coumoundouros, Chelsea, et al.
(författare)
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Sources of support and views of e-mental health among caregivers of adults with kidney conditions
- 2023
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Konferensbidrag (refereegranskat)abstract
- Background: Caregivers of adults with kidney conditions often experience mental health difficulties such as anxiety and depression. E-mental health interventions may help improve access to mental health support. To inform intervention development, this study aimed to explore caregivers’ experiences of receiving support and views of e-mental health interventions. Methods: Semi-structured interviews are being conducted with adults providing unpaid care to an adult with a kidney condition in the United Kingdom. Interviews explore topics such as experiences of receiving support, barriers and facilitators to accessing support, and views on the design and implementation of e-mental health interventions. Interviews are being analysed using reflexive thematic analysis.Expected results: Preliminary findings highlight that caregivers’ situations are complex, challenging, and unpredictable. Informal sources of support (i.e., family, friends and community/social media groups) provide valued support. Support from healthcare professionals is minimal and varied across kidney care units. Limited time and competing responsibilities are major barriers to accessing support, and the flexibility of e-mental health interventions can facilitate access. Incorporating practical tools and activities caregivers could apply to their daily lives are important design considerations. Current stage of work: Nine interviews have been conducted, transcribed, and are being analysed. Recruitment and analysis are ongoing. Discussion: By understanding caregivers’ caring contexts, we can enhance our knowledge of caregivers’ needs, and identify factors to consider during intervention development to design e-mental health interventions tailored to caregivers’ needs and inform future implementation planning. Careful consideration of caregivers’ needs may also increase the acceptability and relevancy of the intervention.
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| 7. |
- Coumoundouros, Chelsea, et al.
(författare)
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Stakeholder perspectives on implementation of e-mental health interventions for caregivers of adults with kidney conditions
- 2023
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Konferensbidrag (refereegranskat)abstract
- Background: E-mental health interventions for caregivers can be effective, but implementation challenges often prevent implementation into real-world practice. To understand these challenges, this study aimed to explore stakeholders’ views on the implementation and design of e-mental health interventions for caregivers of adults with kidney conditions to inform initial intervention development and future implementation planning.Methods: Semi-structured interviews with 18 professional stakeholders working with caregivers and/or people with kidney conditions in healthcare and community settings in the United Kingdom were conducted. Interviews explored topics including the implementation setting, barriers and facilitators to implementation, and intervention design. Interview transcripts were analysed using content analysis with deductive coding using the Consolidated Framework for Implementation Research, and inductive coding.Findings: Stakeholders acknowledged the importance of providing mental health support to caregivers, however, at a societal level (e.g. policy) caregivers tend to be undervalued and are a low priority. Stakeholders expressed equity and safeguarding concerns regarding e-mental health interventions, desiring an intervention accessible to people with different health and digital literacy levels at no cost. Building awareness and knowledge about the intervention among many professionals and having simple intervention referral pathways were important implementation facilitators. Discussion: Provision of mental health support for caregivers is endorsed by stakeholders, however involving stakeholders in implementation beyond promoting and referral of caregivers to the intervention would be challenging without additional resources. Intervention design and implementation factors identified by stakeholders must be considered during intervention development to design e-mental health interventions optimized for implementation into real-world practice.
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| 8. |
- Coumoundouros, Chelsea, et al.
(författare)
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"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
- 2024
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Ingår i: BMC Nephrology. - : BioMed Central (BMC). - 1471-2369. ; 25:1
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Tidskriftsartikel (refereegranskat)abstract
- 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.
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| 9. |
- Farrand, Paul, et al.
(författare)
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Behavioural activation self-help to improve depression in people living with dementia: The PROMOTE treatment protocol.
- 2017
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Ingår i: New Zealand Journal of Psychology. ; 46:2, s. 51-62
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Tidskriftsartikel (refereegranskat)abstract
- There is an increasing number of people living with dementia and depression, with support for people to live well with dementia becoming a global healthcare priority and seminal to the New Zealand Framework for Dementia Care (Ministry of Health, 2013). This paper overviews the clinical protocol for the PROMOTE self-help programme to inform the delivery of a written low intensity intervention based on behavioural activation for the treatment of depression and low mood in people with dementia. The primary aim of the programme is to decrease symptoms of depression and improve quality of life in people living with dementia. Support to the person living with dementia in the use of the PROMOTE programme is provided by an informal caregiver, who themselves receive guidance over the telephone by an appropriately trained mental health professional. This model of support and guidance represents a novel feature of the intervention, and one that potentially helps to increase access within the community. (PsycINFO Database Record (c) 2017 APA, all rights reserved)
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| 10. |
- Farrand, Paul, et al.
(författare)
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Behavioural activation written self-help to improve mood, wellbeing and quality of life in people with dementia supported by informal carers (PROMOTE) : a study protocol for a single-arm feasibility study.
- 2016
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Ingår i: Pilot and feasibility studies. - : Springer Science and Business Media LLC. - 2055-5784. ; 2
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: Increases in life expectancy have resulted in a global rise in dementia prevalence. Dementia is associated with poor wellbeing, low quality of life and increased incidence of mental health difficulties such as low mood or depression. However, currently, there is limited access to evidence-based psychological interventions for people with dementia experiencing low mood and poor wellbeing. Behavioural activation-based self-help, supported by informal carers and guided by mental health professionals, may represent an effective and acceptable solution.METHODS/DESIGN: The present study is a phase II (feasibility) single-arm trial informed by the Medical Research Council complex interventions research methods framework. Up to 50 dementia participant/informal carer dyads will be recruited from a variety of settings including primary care, dementia-specific health settings and community outreach. People living with dementia will receive behavioural activation-based self-help and be supported by their informal carer who has received training in the skills required to support the self-help approach. In turn, during the use of the intervention, the informal carer will be guided by mental health professionals to help them work through the materials and problem solve any difficulties. Consistent with the objectives of feasibility studies, outcomes relating to recruitment from different settings, employment of different recruitment methods, attrition, data collection procedures, clinical delivery and acceptability of the intervention will be examined. Clinical outcomes for people with dementia (symptoms of depression and quality of life) and informal carers (symptoms of depression and anxiety, carer burden and quality of life) will be measured pre-treatment and at 3 months post-treatment allocation.DISCUSSION: This study will examine the feasibility and acceptability of a novel behavioural activation-based self-help intervention designed to promote wellbeing and improve low mood in people living with dementia, alongside methodological and procedural uncertainties associated with research-related procedures. As determined by pre-specified progression criteria, if research procedures and the new intervention demonstrate feasibility and acceptability, results will then be used to inform the design of a pilot randomised controlled trial (RCT) to specifically examine remaining methodological uncertainties associated with recruitment into a randomised controlled design.TRIAL REGISTRATION: Current Controlled Trials ISRCTN42017211.
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