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

Watkins

et al. 2017

Clinical Gerontologist

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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.

Section: Sampling and Participantsmentioning

confidence: 70%

”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

Watkins

et al. 2017

Clinical Gerontologist

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“…Guided LICBT therefore represents a flexible way to deliver evidence-based psychological therapies, making it well suited to address barriers to treatment experienced by informal caregivers given demands of the caregiving role (Woodford et al, 2014;Woodford et al, 2018). Indeed, a review of interventions for informal caregivers of stroke survivors recommended telephone or internet-administered support to increase access for this population (Bakas et al, 2014).…”

Section: Introductionmentioning

confidence: 99%

“…Following the Medical Research Council (MRC) complex interventions framework (Craig et al, 2008), a written CBT self-help intervention for depression in informal caregivers of stroke survivors was developed (Woodford et al, 2014;Woodford et al, 2018). The CBT self-help intervention was designed to be supported by PWPs for delivery within IAPT services (Clark, 2011;Clark, 2018).…”

Section: Introductionmentioning

confidence: 99%

Supported cognitive-behavioural therapy self-help versus treatment-as-usual for depressed informal caregivers of stroke survivors (CEDArS): feasibility randomised controlled trial

Coumoundouros

et al. 2020

tCBT

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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. Key learning aims After reading this article, readers should be able to: (1) Consider key feasibility issues with regard to recruitment and attrition when running a randomised controlled trial of an adapted written cognitive behavioural therapy (CBT) self-help intervention for informal caregivers of stroke survivors. (2) Understand potential barriers experienced by an informal caregiving population to accessing psychological interventions. (3) Appreciate implications for clinical practice to enhance access to IAPT services and low-intensity CBT working with an informal caregiver population.

“…Quality of life will be assessed through the Medical Outcome Survey Short Form 12 (SF-12) [87] and EQ-5D-3L [82]. Health and social care use, for both the person with dementia and informal carer, will be collected via the administration of an adapted version of the Client Socio-Demographic and Service Receipt Inventory (CSRI) [88], based on two versions developed for carers of stroke survivors [74, 89]. In addition, the CSDD-proxy [76] will be administered to informal carers to collect further information concerning the severity of depressive symptoms in the person with dementia.…”

Section: Methodsmentioning

confidence: 99%

“…The interview topic guide is informed by interview topic guides for CBT self-help for patients with multiple sclerosis [90] and carers of stroke survivors [74]. Informal carers and those with dementia who have poor session attendance will be invited to take part in an interview session which will ask questions concerning the reasons for disengaging with the intervention and recommendations for a more acceptable intervention.…”

Section: Methodsmentioning

confidence: 99%

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

Llewellyn

et al. 2016

Pilot Feasibility Stud

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BackgroundIncreases 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/designThe 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.DiscussionThis 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 registrationCurrent Controlled Trials ISRCTN42017211