| 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
(författare)
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Lift your low mood.
- 2022
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Annan publikation (populärvet., debatt m.m.)
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| 10. |
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| 11. |
- Farrand, Paul, et al.
(författare)
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Supported cognitive-behavioural therapy self-help versus treatment-as-usual for depressed informal caregivers of stroke survivors (CEDArS) : feasibility randomised controlled trial
- 2020
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Ingår i: The Cognitive Behaviour Therapist. - 1754-470X. ; 13
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Tidskriftsartikel (refereegranskat)abstract
- Demands placed on informal caregivers can result in an increased likelihood of experiencing common mental health difficulties that may affect their ability to undertake the caring role. Currently, however, few evidence-based interventions have been specifically developed for informal caregivers and available interventions are difficult to access. The Improving Access to Psychological Therapies (IAPT) programme aims to improve access to evidence-based psychological therapies for all groups and may therefore present an opportunity to meet informal caregiver needs. Located within the MRC Complex Intervention Framework, a Phase II feasibility randomised controlled trial (RCT) examines key methodological, procedural and clinical uncertainties associated with running a definitive Phase III RCT of an adapted written cognitive behavioural therapy (CBT) self-help intervention for informal caregivers of stroke survivors. Recruitment was low despite different recruitment strategies being adopted, highlighting significant challenges moving towards a Phase III RCT until resolved. Difficulties with study recruitment may reflect wider challenges engaging informal caregivers in psychological interventions and may have implications for IAPT services seeking to improve access for this group. Further attempts to develop a successful recruitment protocol to progress to a Phase III RCT examining effectiveness of the adapted CBT self-help intervention should be encouraged.
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| 12. |
- Lundgren, Johan, 1977-, et al.
(författare)
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Concerns experienced by parents of children treated for cancer : A qualitative study to inform adaptations to an internet-administered, low-intensity cognitive behavioral therapy intervention
- 2023
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Ingår i: Psycho-Oncology. - : John Wiley & Sons. - 1057-9249 .- 1099-1611. ; 32:2, s. 237-246
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Tidskriftsartikel (refereegranskat)abstract
- Abstract Objective Childhood cancer treatment completion is associated with mental health difficulties and negative socioeconomic consequences for parents. However, psychological support needs are often unmet. We developed an internet-administered, guided, low-intensity cognitive behavioral therapy-based self-help intervention (EJDeR) and examined feasibility and acceptability with a single-arm feasibility trial (ENGAGE). Results suggest EJDeR is acceptable, however, adherence, especially for fathers, could be improved. Following the Medical Research Council complex interventions framework, this study explores concerns experienced by parents actively seeking support related to their child's cancer who were recruited into ENGAGE to inform further adaptation of EJDeR. Method Seventy-three semi-structured interviews (26 fathers, 47 mothers) were conducted, with data analyzed using manifest content analysis. Results Analysis resulted in seven categories: (1) Feeling lost and lonely in life; (2) Low mood; (3) Parenting difficulties; (4) Productivity difficulties; (5) Relationship challenges; (6) Stress reactions; and (7) Worry. With the exception of subcategories Afraid of not being a good parent, Cancer recurrence, and Child's development and future a somewhat higher percentage of mothers than fathers mentioned all identified concerns. Conclusion Parents described experiencing a range of concerns after their child had completed cancer treatment. EJDeR will be adapted to address these concerns and include indirect intervention modules targeting concerns such as stress. Information to support parenting, relationships, finance, and employment difficulties, alongside signposting to inform help-seeking, will be included. Findings also suggest a need to improve the gender-sensitivity of EJDeR.
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| 13. |
- Svedin, Frida, Doktorand, et al.
(författare)
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Adapting a guided low-intensity behavioural activation intervention for people with dementia and depression in the Swedish healthcare context (INVOLVERA) : a study protocol using codesign and participatory action research.
- 2021
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Ingår i: BMJ Open. - : BMJ. - 2044-6055. ; 11:7
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Tidskriftsartikel (refereegranskat)abstract
- INTRODUCTION: Dementia is a worldwide health concern with incident rates continuing to increase. While depression prevalence is high in people with dementia and psychological interventions such as cognitive behavioural therapy (CBT) are effective, access to psychological interventions remains limited. Reliance on traditional CBT for people with dementia and depression may present difficulties given it is a complex psychological approach, costly to deliver, and professional training time is lengthy. An alternative approach is behavioural activation (BA), a simpler psychological intervention for depression. The present study seeks to work with people with dementia, informal caregivers, community stakeholders, and healthcare professionals, to adapt a guided low-intensity BA intervention for people with dementia and depression, while maximising implementation potential within the Swedish healthcare context.METHODS AND ANALYSIS: A mixed methods study using codesign, principles from participatory action research (PAR) and normalisation process theory to facilitate the cultural relevance, appropriateness and implementation potential of the intervention. The study will consist of four iterative PAR phases, using focus groups with healthcare professionals and community stakeholders, and semi-structured interviews with people with dementia and informal caregivers. A content analysis approach will be adopted to analyse the transcribed focus groups and semi-structured interviews recordings.ETHICS AND DISSEMINATION: The study will be conducted in accordance with the Declaration of Helsinki and data handled according to General Data Protection Regulation. Written informed consent will be obtained from all study participants. In accordance with the Swedish Health and Medical Services Act, capacity to consent will be examined by a member of the research team. Ethical approval has been obtained from the Swedish Ethical Review Authority (Dnr: 2020-05542 and Dnr: 2021-00925). Findings will be published in an open access peer-reviewed journal, presented at academic conferences, and disseminated among lay and healthcare professional audiences.
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| 14. |
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| 15. |
- Svedin, Frida, Doktorand, et al.
(författare)
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Adapting a guided low-intensity behavioural activation intervention for people with dementia and depression in the Swedish healthcare context (INVOLVERA)
- 2021
-
Konferensbidrag (refereegranskat)abstract
- Global health and social care policy highlights the need to support people to ‘live well’ with dementia. This is of particular importance given the high burden placed on individuals with dementia, informal caregivers, and society. Depression is highly prevalent in people with dementia, stressing the importance of developing interventions to support people with both dementia and depression. Despite evidence-based psychological interventions (e.g., cognitive behavioral therapy (CBT)) being effective, access is limited. To overcome this psychological ‘treatment gap’, there have been global efforts made via the provision of low-intensity CBT (LI-CBT). Behavioural activation (BA), an example of a LI-CBT approach shown to be as effective as CBT in the treatment of depression. Research informed by the Medical Research Council complex interventions framework has been conducted in the United Kingdom to develop and test a guided low-intensity BA intervention adapted for people with dementia. An innovative aspect of the intervention is support to the person with dementia is provided by an informal caregiver, in turn the informal caregiver receives guidance from a healthcare professional. Initial results indicated the intervention was acceptable and feasible, and may therefore represent a solution for the Swedish context. However, before implementing in Sweden, there is a need for contextual adaptation. Using a mixed-methods study design, informed by principles from participatory action research, this study involved people with dementia, informal caregivers, healthcare professionals and community organisations to co-design and adapt the guided low-intensity BA intervention for the Swedish context. Through a series of iterative phases, we conduct interviews and focus groups with participants to gain feedback on the BA intervention to inform adaptations to improve the acceptability, relevancy, and feasibility of the intervention. After each phase we amend the intervention according to feedback. During the presentation the preliminary results and research progress will be presented.
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| 16. |
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| 17. |
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| 18. |
- Svedin, Frida, Doktorand, 1995-, et al.
(författare)
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Developing and adapting a guided low-intensity behavioral activation intervention targeting depression in people with dementia for the Swedish context (The INVOLVERA Study)
- 2022
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Konferensbidrag (refereegranskat)abstract
- Introduction: Dementia continues to increase worldwide, with numbers set to rise from 50 million in 2021 to 150 million by 2050. Global health and social care policies highlight a need to support people with dementia to ‘live well’. This is of particular importance given the high burden caused by dementia on individuals, informal caregivers, and society. Depression is highly prevalent in people with dementia. Whilst evidence-based psychological interventions (e.g. Cognitive Behavioral Therapy (CBT)) have been shown effective, access remains limited. To overcome this psychological ‘treatment gap’, global efforts have been made to increase access via provision of low-intensity CBT. Behavioral activation (BA), an example of an evidence-based low-intensity CBT approach, may represent a solution for people with dementia and depression in Sweden. Given the promise of BA, research was conducted in the United Kingdom to develop and examine feasibility of a low-intensity BA intervention tailored to people with dementia. Findings indicated the intervention feasible and acceptable to people with dementia and their informal caregivers. Given the promise of the intervention, development work has taken place in Sweden to maximise acceptability, relevancy, and feasibility in the Swedish context.Method: A mixed-methods study involving people with dementia, informal caregivers, healthcare professionals, and non-governmental organisations (NGOs) to co-design and adapt the intervention for the Swedish context. Through iterative phases, interviews and focus groups were conducted with all stakeholders to gain feedback on the intervention. Results informed adaptations to improve intervention acceptability, relevancy, and feasibility. Interviews and focus groups were analysed using framework content analysis according to Normalization Process Theory (NPT) constructs (Coherence, Cognitive Participation, Collective Action, Reflexive Monitoring). Alongside, a Public Involvement group was established to further inform the intervention design.Results: Preliminary results indicate facilitators include: (1) intervention has the potential to fill a large psychological treatment gap given lack of current support (Coherence); (2) objectives and potential benefits of intervention were understood and agreed by stakeholders (Coherence). Barriers include: (1) lack of involvement and engagement from politicians, decision-makers, and managers (Collective Action); (2) lack of appropriate workforce providing guidance to the intervention in Sweden (Collective Action); (3) NGOs not recognising their potential role in the intervention (Cognitive Participation); (4) lack of time and financial resources (Collective Action); (5) healthcare professionals and NGOs acting gatekeepers for informal caregivers accessing support (Cognitive Participation).Discussion: Psychological needs of people with dementia and depression are currently unmet by Swedish healthcare. The proposed intervention has potential to meet unmet psychological needs and global priorities to support people with dementia to ‘live well’. Given barriers to intervention implementation are common, NPT provides a useful framework for understanding potential barriers and facilitators to implementation from the intervention development phase. Understanding barriers and facilitators to implementation at the intervention development phase may enhance future implementation potential if intervention is shown effective.Conclusion: Results inform the development of a tailored intervention, optimised to improve maximise acceptability, relevancy, and feasibility for people with dementia and depression. A subsequent feasibility study will further examine the feasibility and acceptability of the intervention.
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| 19. |
- Svedin, Frida, Doktorand, 1995-, et al.
(författare)
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Development and co-design of a behavioral activation intervention targeting depression among people with dementia for the Swedish context
- 2023
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Konferensbidrag (refereegranskat)abstract
- Background: Approximately 40% of people with dementia experience depression. Whilst psychological interventions are effective for the treatment of depression in dementia, access remains low. A behavioural activation self-help intervention, with support to the person with dementia to use the intervention provided by an informal caregiver, who themselves receives guidance from an occupational therapist (or other trained healthcare professional), may represent a solution.Objective: To develop a behavioral activation intervention targeting depression among people with dementia for the Swedish context together with key stakeholders.Methods: Semi-structured interviews and focus groups were held with people with dementia (n=8), informal caregivers (n=19), healthcare professionals (n=18), and non-governmental organisations (n=7) and analysed using manifest content analysis. A Public Advisory Group, consisting of informal caregivers of people with dementia (n=4), worked alongside the research team to support the interpretation and sense-making of research findings and co-design of the intervention.Results: An overarching theme ‘Tailoring and flexibility’ resulted from interviews and focus groups. Stakeholders expressed a need to adapt intervention material to increase relevancy and representativeness by: (1) adding multiple case stories to illustrate different life situations, age groups, ethnic backgrounds, and to increase relevance to Swedish society and culture; (2) designing new illustrations, as proposed illustrations were perceived old-fashioned and reinforced ageing and dementia stereotypes; and (3) reducing text to minimize treatment burden. Stakeholders also expressed a need for flexibility concerning intervention delivery and expressed a need for choice concerning: (1) location of guidance sessions to enable face-to-face sessions to be delivered in a familiar, safe, and convenient environment (e.g., home or familiar community setting); (2) mode of guidance (e.g., face-to-face, telephone, online); and (3) amount of guidance (e.g., frequency and number of guidance sessions).Conclusions: Results informed the development of a tailored intervention, optimised to improve acceptability, feasibility, and relevancy for people with dementia and depression. A planned feasibility study will further examine feasibility and acceptability of the intervention.Public involvement: Our Public Advisory Group has worked closely together with the research team to support the interpretation and sense-making of research findings and co-design the intervention to increase acceptability and relevancy of the intervention.
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| 20. |
- Svedin, Frida, Doktorand, 1995-, et al.
(författare)
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Effectiveness, acceptability, and completeness and quality of intervention reporting of psychological interventions for people with dementia or mild cognitive impairment : protocol for a mixed-methods systematic review
- 2023
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Ingår i: BMJ Open. - : BMJ Publishing Group Ltd. - 2044-6055. ; 13:12
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Tidskriftsartikel (refereegranskat)abstract
- Introduction: Mental health difficulties such as anxiety and depression have negative impacts on psychological well-being and are common in people with dementia and mild cognitive impairment. However, access to psychological treatments is limited. This mixed-method systematic review will: (1) examine the effectiveness of psychological interventions to improve mental health and psychological well-being in people with dementia or mild cognitive impairment; (2) examine the effectiveness of these psychological interventions to improve mental health and psychological well-being in informal caregivers; (3) examine potential clinical and methodological moderators associated with effectiveness; (4) explore factors associated with the acceptability of psychological interventions from the perspective of key stakeholders; and (5) examine the completeness and quality of intervention reporting.Methods and analysis: Electronic databases (ASSIA, CENTRAL, CINAHL, EMBASE, PsycINFO and MEDLINE) will be systematically searched and supplemented with expert contact, reference and citation checking, and grey literature searches. If possible, we will conduct a meta-analysis to examine the overall effectiveness of psychological interventions to improve mental health and psychological well-being in people with dementia or mild cognitive impairment and their informal caregivers; and examine potential clinical and methodological moderators associated with effectiveness. We will conduct a deductive framework synthesis, informed by the theoretical framework of acceptability, to explore factors associated with the acceptability of psychological interventions from the perspective of key stakeholders. In accordance with Joanna Briggs Institute guidance, we will adopt a convergent segregated approach to data synthesis and integration of quantitative and qualitative findings. We will examine the completeness and quality of intervention reporting according to the Template for Intervention Description and Replication checklist and guide.Ethics and dissemination: No primary data will be collected, and therefore, ethical approval is not required. Results will be disseminated through a peer-reviewed publication, academic conferences, and plain language summaries.PROSPERO registration number: CRD42023400514.
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| 21. |
- Svedin, Frida, Doktorand, 1995-, et al.
(författare)
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Healthcare and community stakeholders' perceptions of barriers and facilitators to implementing a behavioral activation intervention for people with dementia and depression : a qualitative study using Normalization Process Theory
- 2023
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Ingår i: BMC Geriatrics. - : BioMed Central (BMC). - 1471-2318. ; 23:1
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Tidskriftsartikel (refereegranskat)abstract
- BackgroundDepression is commonly experienced by people with dementia, and associated with lower quality of life and functional decline. However, access to evidence-based psychological interventions for people with dementia and depression is limited. One potential solution is guided low-intensity behavioral activation. Following the new Medical Research Council Framework, considering factors such as potential barriers and facilitators to implementation is recommended during the development of new interventions. Aims of this study were to: (1) develop an understanding of existing healthcare and community support in the Swedish context for people with dementia and their informal caregivers; and (2) identify barriers and facilitators to intervention uptake informed by Normalization Process Theory.MethodsSemi-structured interviews and focus groups were held with healthcare (n = 18) and community (n = 7) stakeholders working with people with dementia and/or informal caregivers. Interview questions were informed by Normalization Process Theory. Data was analysed utilizing a two-step deductive analysis approach using the Normalization Process Theory coding manual, with inductive categories applied to data related to the main mechanisms of the theory, but not captured by its sub-constructs.ResultsTwelve deductive and three inductive categories related to three Normalization Process Theory primary mechanisms (Coherence, Cognitive Participation, and Collective Action) were identified. Identified barriers to intervention uptake included: (1) additional burden for informal caregivers; (2) lack of appropriate workforce to provide guidance; (3) lack of time and financial resources; (4) people with dementia not recognising their diagnosis of dementia and/or a need for support; and (5) stigma. Identified facilitators to intervention uptake included: (1) intervention has potential to fill a large psychological treatment gap in Sweden; (2) objectives and potential benefits understood and agreed by most stakeholders; and (3) some healthcare professionals recognized their potential role in providing intervention guidance.ConclusionsSeveral barriers and facilitators for future implementation, specific to the intervention, individuals and families, as well as professionals, were identified during intervention development. Barriers were mapped into evidence-based implementation strategies, which will be adopted to overcome identified barriers. A feasibility study further examining implementation potential, acceptability and feasibility, alongside clinical, methodological, and procedural uncertainties associated with the intervention will be conducted.
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| 22. |
- Svedin, Frida, Doktorand, 1995-, et al.
(författare)
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Professional stakeholders’ perceptions of barriers and facilitators to implementing a behavioural activation intervention for people with dementia
- 2024
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Konferensbidrag (refereegranskat)abstract
- Introduction: Depression is commonly experienced by people with dementia. Whilst evidence-based psychologicalinterventions are effective, a large psychological care gap remains. Behavioral activation may representa potential solution to close this gap. Following the MRC Framework for developing complexinterventions, considering potential barriers and facilitators to implementation is recommended duringintervention development. This study aimed to identify professional stakeholders’ perceptions of barriersand facilitators to future implementation.Methods: Following a topic guide informed by Normalization Process Theory (NPT), focus groups and semistructuredinterviews were held with healthcare professionals (n=18) and community stakeholders (n=7).Data was analyzed using the NPT coding manual, with inductive categories generated for data related tomain NPT mechanisms, but not captured by its sub-constructs.Results: A number of barriers and facilitators were identified. Facilitators include the proposed intervention: (1)has potential to fill a large psychological care gap; (2) has understandable and agreed upon objectivesand potential benefits; and (3) could easily be integrated into the lives of people with dementia and theirinformal caregivers. Barriers include lack of: (1) engagement from politicians and decision-makers; (2)appropriate workforce to provide intervention guidance; (3) time and financial resources.Conclusions: Results have informed the adaptation of a tailored intervention, optimized to improve futureimplementation potential. A subsequent feasibility study will further examine intervention feasibility andacceptability.
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| 23. |
- Woodford, Joanne, et al.
(författare)
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Internet-Administered Cognitive Behavioral Therapy for Common Mental Health Difficulties in Parents of Children Treated for Cancer : Intervention Development and Description Study
- 2021
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Ingår i: JMIR Formative Research. - : JMIR Publications. - 2561-326X. ; 5:7
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Tidskriftsartikel (refereegranskat)abstract
- Background: Following the end of a child’s treatment for cancer, parents may report psychological distress. However, there is a lack of evidence-based interventions that are tailored to the population, and psychological support needs are commonly unmet. An internet-administered low-intensity cognitive behavioral therapy (LICBT)–based intervention (EJDeR [internetbaserad självhjälp för föräldrar till barn som avslutat en behandling mot cancer]) may provide a solution.Objective: The first objective is to provide an overview of a multimethod approach that was used to inform the development of the EJDeR intervention. The second objective is to provide a detailed description of the EJDeR intervention in accordance with the Template for Intervention Description and Replication (TIDieR) checklist.Methods: EJDeR was developed through a multimethod approach, which included the use of existing evidence, the conceptualization of distress, participatory action research, a cross-sectional survey, and professional and public involvement. Depending on the main presenting difficulty identified during assessment, LICBT behavioral activation or worry management treatment protocols are adopted for the treatment of depression or generalized anxiety disorder when experienced individually or when comorbid. EJDeR is delivered via the Uppsala University Psychosocial Care Programme (U-CARE) portal, a web-based platform that is designed to deliver internet-administered LICBT interventions and includes secure videoconferencing. To guide parents in the use of EJDeR, weekly written messages via the portal are provided by e-therapists comprising final year psychology program students with training in cognitive behavioral therapy.Results: An overview of the development process and a description of EJDeR, which was informed by the TIDieR checklist, are presented. Adaptations that were made in response to public involvement are highlighted.Conclusions: EJDeR represents a novel, guided, internet-administered LICBT intervention for supporting parents of children treated for cancer. Adopting the TIDieR checklist offers the potential to enhance fidelity to the intervention protocol and facilitate later implementation. The intervention is currently being tested in a feasibility study (the ENGAGE study).
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