| 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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| 11. |
- Farrand, Paul, et al.
(författare)
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Effectiveness of Cognitive Behavioural Self-Help for the Treatment of Depression and Anxiety in People with Long-Term Physical Health Conditions : a Systematic Review and Meta-Analysis of Randomised Controlled Trials
- 2015
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Ingår i: Annals of Behavioral Medicine. - : Oxford University Press. - 0883-6612 .- 1532-4796. ; 49:4, s. 579-593
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Tidskriftsartikel (refereegranskat)abstract
- BACKGROUND: Depression and anxiety are prevalent comorbidities in people with long-term physical health conditions; however, there is limited access to evidence-based treatments for comorbid mental health difficulties.PURPOSE: This study is a meta-analysis examining the effectiveness of cognitive behavioural self-help for physical symptoms, depression and anxiety in people with long-term conditions.METHODS: This study involves a systematic search of electronic databases supplemented by expert contact, reference and citation checking and grey literature.RESULTS: The meta-analysis yielded a small effect size for 11 studies reporting primary outcomes of depression (g = -0.20) and 8 studies anxiety (g = -0.21) with a large effect size (g = -1.14) for 1 study examining physical health symptoms. There were no significant moderators of the main effect.CONCLUSIONS: Limited evidence supports cognitive behavioural self-help for depression, anxiety and physical symptoms in people with long-term conditions. Small effect sizes for depression and anxiety may result from failure to recruit participants with clinical levels of these difficulties at baseline.
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| 12. |
- Farrand, Paul, et al.
(författare)
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Impact of support on the effectiveness of written cognitive behavioural self-help : a systematic review and meta-analysis of randomised controlled trials
- 2013
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Ingår i: Clinical Psychology Review. - : Elsevier. - 0272-7358 .- 1873-7811. ; 33:1, s. 182-195
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Tidskriftsartikel (refereegranskat)abstract
- Cognitive behavioural therapy self-help is an effective intervention for a range of common mental health difficulties. However the extent to which effectiveness may vary by type of support--guided, minimal contact, self-administered--has not been extensively considered. This review identifies the impact of support on the effectiveness of written cognitive behavioural self-help and further explores the extent to which effectiveness varies across mental health condition by type of support provided. Randomised controlled trials were identified by searching relevant bibliographic databases, clinical trials registers, conference proceedings and expert contact. 38 studies were included in the meta-analysis yielding a statistically significant overall mean effect size (Hedges' g=-0.49). Overall effect size did not significantly differ by type of support (Q=0.85, df=2, p=0.65) (guided: Hedges' g=-0.53; minimal contact: Hedges' g=-0.55; self-administered: Hedges' g=-0.42). For guided and self-administered types of support, planned comparisons revealed a trend for effect size to vary by mental health condition and for guided CBT self-help the modality of support was significant (Q=6.32, df=2, p=0.04), with the largest effect size associated with telephone delivery (Hedges' g=-0.91). Additional moderator analysis was undertaken for depression given the number of available studies. Regardless of higher baseline levels of severity the effect size for minimal contact was greater than for guided support. Greater consideration should be given to the potential that type of support may be related to the effectiveness of written cognitive behavioural self-help and that this may vary across mental health condition. Findings from this systematic review make several recommendations to inform future research.
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| 13. |
- 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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| 14. |
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| 15. |
- Farrand, Paul, et al.
(författare)
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Measurement of individualised quality of life amongst young people with indicated personality disorder during emerging adulthood using the SEIQoL-DW
- 2012
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Ingår i: Quality of Life Research. - : Springer Science and Business Media LLC. - 0962-9343 .- 1573-2649. ; 22:4, s. 829-838
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Tidskriftsartikel (refereegranskat)abstract
- Purpose: To examine both the feasibility of applying the Schedule for the Evaluation of Individual Quality of Life-Direct Weighting procedure (SEIQoL-DW) as a routine outcome measure within an early intervention service for young people with indicated personality disorder and the overall quality of life (QoL) in this population.Methods: SEIQoL-DW was administered alongside the Standardised Assessment of Personality-Abbreviated Scale-Self-Report (SAPAS-SR), Patient Health Questionnaire (PHQ-9), Generalised Anxiety Disorder Scale (GAD-7) and the Post-Traumatic Stress Disorder-Primary Care (PTSD-PC) as part of routine service evaluation over a 16-month period. Descriptive statistics were calculated for data reflecting use of the SEIQoL-DW alongside demographic and outcome variables.Results: The SEIQoL-DW was administered to 52 young adults with indicated personality disorder, with 47 completing the measure, taking an average time of 27 min. Individual QoL was poor with a mean global index score of 55.07 (SD = 22.34). Individual QoL areas formed five main domains-'Aspects of Daily Living', 'Relationships', 'Social Life and Leisure', 'Family' and 'Emotional and Physical Wellbeing'.Conclusion: This study further extends the application of the SEIQoL-DW for use as a routine outcome measure within a busy service setting, although ways to accommodate administration time need to be considered. Poor QoL highlights the need for continued development of services to meet the needs of young adults with indicated personality disorder.
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| 16. |
- Farrand, Paul, et al.
(författare)
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Psychological interventions to improve psychological well-being in people with dementia or mild cognitive impairment : systematic review and meta-analysis protocol
- 2016
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Ingår i: BMJ Open. - : BMJ Publishing Group Ltd. - 2044-6055. ; 6:1
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Tidskriftsartikel (refereegranskat)abstract
- Introduction: Dementia and mild cognitive impairment are associated with an increased risk of depression, anxiety, psychological distress and poor mental health-related quality of life. However, there is a lack of research examining the evidence base for psychological interventions targeting general psychological well-being within this population. Furthermore, there is little research relating to the design of randomised controlled trials examining psychological interventions for dementia and mild cognitive impairment, such as effective recruitment techniques, trial eligibility and appropriate comparators.Methods and analysis: Systematic review of electronic databases (CINAHL; EMBASE; PsychInfo; MEDLINE; ASSIA and CENTRAL), supplemented by expert contact, reference and citation checking, and grey literature searches. Published and unpublished studies will be eligible for inclusion with no limitations placed on year of publication. Primary outcomes of interest will be standardised measurements of depression, anxiety, psychological distress or mental health-related quality of life. Eligibility and randomisation proportions will be calculated as secondary outcomes. If data permits, meta-analytical techniques will examine: (1) overall effectiveness of psychological interventions for people with dementia or mild cognitive impairment in relation to outcomes of depression, anxiety, psychological distress or mental health-related quality of life; (2) clinical and methodological moderators associated with effectiveness; (3) proportions eligible, recruited and randomised.Ethics and dissemination: Ethical approval is not required for the present systematic review. Results will inform the design of a feasibility study examining a new psychological intervention for people with dementia and depression, with dissemination through publication in peer-reviewed journals and presentations at relevant conferences.
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| 17. |
- 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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| 18. |
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| 19. |
- 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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| 20. |
- 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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| 21. |
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| 22. |
- 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
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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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| 23. |
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| 24. |
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| 25. |
- 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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| 26. |
- 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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| 27. |
- 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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| 28. |
- 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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| 29. |
- 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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| 30. |
- Woodford, Joanne, et al.
(författare)
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"I Don't Believe in Leading a Life of My Own, I Lead His Life" : A Qualitative Investigation of Difficulties Experienced by Informal Caregivers of Stroke Survivors Experiencing Depressive and Anxious Symptoms
- 2018
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Ingår i: Clinical Gerontologist. - : Routledge. - 0731-7115 .- 1545-2301. ; 41:4, s. 293-307
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Tidskriftsartikel (refereegranskat)abstract
- Objectives: Health and social care services are increasingly reliant on informal caregivers to provide long-term support to stroke survivors. However, caregiving is associated with elevated levels of depression and anxiety in the caregiver that may also negatively impact stroke survivor recovery. This qualitative study aims to understand the specific difficulties experienced by caregivers experiencing elevated symptoms of anxiety and depression.Methods: Nineteen semi-structured interviews were conducted with caregivers experiencing elevated levels of depression and anxiety, with a thematic analysis approach adopted for analysis.Results: Analysis revealed three main themes: Difficulties adapting to the caring role; Uncertainty; and Lack of support.Conclusions: Caregivers experienced significant difficulties adapting to changes and losses associated with becoming a caregiver, such as giving up roles and goals of importance and value. Such difficulties persisted into the long-term and were coupled with feelings of hopelessness and worry. Difficulties were further exacerbated by social isolation, lack of information and poor long-term health and social care support.Clinical implications: A greater understanding of difficulties experienced by depressed and anxious caregivers may inform the development of psychological support targeting difficulties unique to the caring role. Improving caregiver mental health may also result in health benefits for stroke survivors themselves.
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| 31. |
- 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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| 32. |
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| 33. |
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| 34. |
- Woodford, Joanne, et al.
(författare)
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Psychological treatments for common mental health problems experienced by informal carers of adults with chronic physical health conditions (Protocol)
- 2013
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Ingår i: Systematic Reviews. - : BioMed Central (BMC). - 2046-4053. ; 2:1
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Forskningsöversikt (refereegranskat)abstract
- Background: Improved life expectancy is resulting in increased outpatient treatment of people with chronic physical health conditions and reliance on the provision of informal care in the community. However, informal care is also associated with increased risk of experiencing common mental health difficulties such as depression and anxiety. Currently there is a lack of evidence-based treatments for such difficulties, resulting in poor health outcomes for both the informal carer and care recipient.Methods/design: Electronic databases will be systemically searched for randomised controlled trials examining the effectiveness of psychological interventions targeted at treating depression or anxiety experienced by informal carers of patients with chronic physical health conditions. Database searches will be supplemented by contact with experts, reference and citation checking and grey literature. Both published and unpublished research in English language will be reviewed with no limitations on year or source. Individual, group and patient-carer dyad focused interventions will be eligible. Primary outcomes of interest will be validated self-report or clinician administered measures of depression or anxiety. If data allows a meta-analysis will examine: (1) the overall effectiveness of psychological interventions in relation to outcomes of depression or anxiety; (2) intervention components associated with effectiveness.Discussion: This review will provide evidence on the effectiveness of psychological interventions for depression and anxiety experienced by informal carers of patients with chronic physical health conditions. In addition, it will examine intervention components associated with effectiveness. Results will inform the design and development of a psychological intervention for carers of people with chronic physical health conditions experiencing depression and anxiety. PROSPERO registration number: CRD42012003114.
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| 35. |
- Woodford, Joanne, et al.
(författare)
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Recruitment into a guided internet based CBT (iCBT) intervention for depression : Lesson learnt from the failure of a prevalence recruitment strategy
- 2011
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Ingår i: Contemporary Clinical Trials. - : Elsevier. - 1551-7144 .- 1559-2030. ; 32:5, s. 641-648
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Tidskriftsartikel (refereegranskat)abstract
- Introduction: Internet based Cognitive Behavioural Therapy (iCBT) represents a significant development in the way psychological interventions are delivered. Studies tend to recruit via common media channels leading to criticisms of biased sample sizes and limited generalisability to primary care settings.Aim: To evaluate the use of a prevalence recruitment strategy within primary care to recruit into an RCT examining a free to use iCBT intervention.Methods: Fully randomised controlled trial (RCT), utilising a prevalence based recruitment strategy, comparing the iCBT intervention with telephone support provided by NHS Direct Health Advisors with treatment-as-usual (TAU) control.Results: Recruitment rates were low with only 7 participants recruited over 8 months. Overall only 14% of expected study invitations were sent, with only 1% undertaking the consent and initial screening process.Discussion: Key differences with successful prevalence recruitment strategies highlight four main issues to consider when recruiting participants from primary care into iCBT studies--lack of equipoise, a need for an assertive approach, coding of depression in GP databases and help seeking behaviour in depression which can all act as potential contributors to failure to recruit. However other non-primary care recruitment methods, such as the use of media channels, which are already shown to be effective in non-primary care settings should be considered if these methods more accurately target the population who would be willing to adopt iCBT more generally.
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| 36. |
- Woodford, Joanne, et al.
(författare)
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Supported cognitive-behavioural self-help versus treatment-as-usual for depressed informal carers of stroke survivors (CEDArS) : study protocol for a feasibility randomized controlled trial
- 2014
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Ingår i: Trials. - : BioMed Central (BMC). - 1745-6215. ; 15:1
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Tidskriftsartikel (refereegranskat)abstract
- Background: Increased life expectancy has resulted in a greater provision of informal care within the community for patients with chronic physical health conditions. Informal carers are at greater risk of poor mental health, with one in three informal carers of stroke survivors experiencing depression. However, currently no psychological treatments tailored to the unique needs of depressed informal carers of stroke survivors exist. Furthermore, informal carers of stroke survivors experience a number of barriers to attending traditional face-to-face psychological services, such as lack of time and the demands of the caring role. The increased flexibility associated with supported cognitive behavioral therapy self-help (CBTsh), such as the ability for support to be provided by telephone, email, or face-to-face, alongside shorter support sessions, may help overcome such barriers to access. CBTsh, tailored to depressed informal carers of stroke survivors may represent an effective and acceptable solution.Methods/design: This study is a Phase II (feasibility) randomized controlled trial (RCT) following guidance in the MRC Complex Interventions Research Methods Framework. We will randomize a sample of depressed informal carers of stroke survivors to receive CBT self-help supported by mental health paraprofessionals, or treatment-as-usual. Consistent with the objectives of assessing the feasibility of trial design and procedures for a potential larger scale trial we will measure the following outcomes: a) feasibility of patient recruitment (recruitment and refusal rates); (b) feasibility and acceptability of data collection procedures; (c) levels of attrition; (d) likely intervention effect size; (e) variability in number, length and frequency of support sessions estimated to bring about recovery; and (f) acceptability of the intervention. Additionally, we will collect data on the diagnosis of depression, symptoms of depression and anxiety, functional impairment, carer burden, quality of life, and stroke survivor mobility skill, self-care and functional ability, measured at four and six months post-randomization.Discussion: This study will provide important information for the feasibility and design of a Phase III (effectiveness) trial in the future. If the intervention is identified to be feasible, effective, and acceptable, a written CBTsh intervention for informal carers of stroke survivors, supported by mental health paraprofessionals, could represent a cost-effective model of care.Trial registration: Current Controlled Trials ISRCTN63590486.
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