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START (STrAtegies for RelaTives) coping strategy for family carers of adults with dementia: qualitative study of participants' views about the intervention.

ABSTRACT: OBJECTIVES:To analyse the experience of individual family carers of people with dementia who received a manual-based coping strategy programme (STrAtegies for RelaTives, START), demonstrated in a randomised-controlled trial to reduce affective symptoms. DESIGN:A qualitative study using self-completed questionnaires exploring the experience of the START intervention. Two researchers transcribed, coded and analysed completed questionnaires thematically. SETTING:Three mental health and one neurology dementia clinic in South East England. PARTICIPANTS:Participants were primary family carers of a patient diagnosed with dementia who provided support at least weekly to their relative. We invited those in the treatment group remaining in the START study at 2?years postrandomisation (n=132) to participate. 75 people, comprising a maximum variation sample, responded. PRIMARY AND SECONDARY OUTCOME MEASURES:(1) Important aspects of the therapy. (2) Continued use of the intervention after the end of the therapy. (3) Unhelpful aspects of the therapy and suggestions for improvement. (4) Appropriate time for intervention delivery. RESULTS:Carers identified several different components as important: relaxation techniques, education about dementia, strategies to help manage the behaviour of the person with dementia, contact with the therapist and changing unhelpful thoughts. Two-thirds of the participants reported that they continue to use the intervention's techniques at 2-year follow up. Few participants suggested changes to the intervention content, but some wanted more sessions and others wanted the involvement of more family members. Most were happy with receiving the intervention shortly after diagnosis, although some relatives of people with moderate dementia thought it should have been delivered at an earlier stage. CONCLUSIONS:Participants' varied responses about which aspects of START were helpful suggest that a multicomponent intervention is suited to the differing circumstances of dementia carers, providing a range of potentially helpful strategies. The continued use of the strategies 2?years after receiving the intervention could be a mechanism for the intervention remaining effective.

SUBMITTER: Sommerlad A

PROVIDER: S-EPMC4054623 | biostudies-literature | 2014 Jun

REPOSITORIES: biostudies-literature

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START (STrAtegies for RelaTives) coping strategy for family carers of adults with dementia: qualitative study of participants' views about the intervention.

Sommerlad Andrew A Manela Monica M Cooper Claudia C Rapaport Penny P Livingston Gill G

BMJ open 20140604 6

<h4>Objectives</h4>To analyse the experience of individual family carers of people with dementia who received a manual-based coping strategy programme (STrAtegies for RelaTives, START), demonstrated in a randomised-controlled trial to reduce affective symptoms.<h4>Design</h4>A qualitative study using self-completed questionnaires exploring the experience of the START intervention. Two researchers transcribed, coded and analysed completed questionnaires thematically.<h4>Setting</h4>Three mental h ...[more]

PMID: 24898089

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Project description:ObjectiveTo assess whether a manual based coping strategy compared with treatment as usual reduces depression and anxiety symptoms in carers of family members with dementia.DesignRandomised, parallel group, superiority trial.SettingThree mental health community services and one neurological outpatient dementia service in London and Essex, UK.Participants260 carers of family members with dementia.InterventionA manual based coping intervention comprising eight sessions and delivered by supervised psychology graduates to carers of family members with dementia. The programme consisted of psychoeducation about dementia, carers' stress, and where to get emotional support; understanding behaviours of the family member being cared for, and behavioural management techniques; changing unhelpful thoughts; promoting acceptance; assertive communication; relaxation; planning for the future; increasing pleasant activities; and maintaining skills learnt. Carers practised these techniques at home, using the manual and relaxation CDs.Main outcome measuresAffective symptoms (hospital anxiety and depression total score) at four and eight months. Secondary outcomes were depression and anxiety caseness on the hospital anxiety and depression scale; quality of life of both the carer (health status questionnaire, mental health) and the recipient of care (quality of life-Alzheimer's disease); and potentially abusive behaviour by the carer towards the recipient of care (modified conflict tactics scale).Results260 carers were recruited; 173 were randomised to the intervention and 87 to treatment as usual. Mean total scores on the hospital anxiety and depression scale were lower in the intervention group than in the treatment as usual group over the eight month evaluation period: adjusted difference in means -1.80 points (95% confidence interval -3.29 to -0.31; P=0.02) and absolute difference in means -2.0 points. Carers in the intervention group were less likely to have case level depression (odds ratio 0.24, 95% confidence interval 0.07 to 0.76) and there was a non-significant trend towards reduced case level anxiety (0.30, 0.08 to 1.05). Carers' quality of life was higher in the intervention group (difference in means 4.09, 95% confidence interval 0.34 to 7.83) but not for the recipient of care (difference in means 0.59, -0.72 to 1.89). Carers in the intervention group reported less abusive behaviour towards the recipient of care compared with those in the treatment as usual group (odds ratio 0.47, 95% confidence interval 0.18 to 1.23), although this was not significant.ConclusionsA manual based coping strategy was effective in reducing affective symptoms and case level depression in carers of family members with dementia. The carers' quality of life also improved.Trial registrationCurrent Controlled Trials ISCTRN70017938.

Project description:ObjectiveTo assess whether the START (STrAtegies for RelatTives) intervention added to treatment as usual is cost effective compared with usual treatment alone.DesignCost effectiveness analysis nested within a pragmatic randomised controlled trial.SettingThree mental health and one neurological outpatient dementia service in London and Essex, UK.ParticipantsFamily carers of people with dementia.InterventionEight session, manual based, coping intervention delivered by supervised psychology graduates to family carers of people with dementia added to usual treatment, compared with usual treatment alone.Primary outcome measuresCosts measured from a health and social care perspective were analysed alongside the Hospital Anxiety and Depression Scale total score (HADS-T) of affective symptoms and quality adjusted life years (QALYs) in cost effectiveness analyses over eight months from baseline.ResultsOf the 260 participants recruited to the study, 173 were randomised to the START intervention, and 87 to usual treatment alone. Mean HADS-T scores were lower in the intervention group than the usual treatment group over the 8 month evaluation period (mean difference -1.79 (95% CI -3.32 to -0.33)), indicating better outcomes associated with the START intervention. There was a small improvement in health related quality of life as measured by QALYs (0.03 (-0.01 to 0.08)). Costs were no different between the intervention and usual treatment groups (£252 (-28 to 565) higher for START group). The cost effectiveness calculations suggested that START had a greater than 99% chance of being cost effective compared with usual treatment alone at a willingness to pay threshold of £30,000 per QALY gained, and a high probability of cost effectiveness on the HADS-T measure.ConclusionsThe manual based coping intervention START, when added to treatment as usual, was cost effective compared with treatment as usual alone by reference to both outcome measures (affective symptoms for family carers, and carer based QALYs).Trial registrationISCTRN 70017938.

Project description:Family members remain the main care providers for the increasing numbers of people with dementia, and often become depressed or anxious. In an implementation research project, we aimed to widen access to Strategies for RelaTives (START), a clinically and cost-effective intervention for the mental health of family carers, by laying the foundations for its implementation in the third sector. We used the integrated Promoting Action on Research Implementation in Health Services (i-PARIHS) framework to guide implementation of START, a manual-based, individually-delivered, multicomponent eight-session coping strategy intervention. We interviewed a maximum variation sample of twenty-seven stakeholders from the English Alzheimer's Society (AS), about possible difficulties in management, training, and delivery of START. We trained and supervised three AS dementia support workers in different locations, to each deliver START to three family carers. Two researchers independently coded pre-intervention interviews for themes. We assessed intervention feasibility through monitoring delivery fidelity, rating audio-recordings from 1-5 (5 being high) and interviewing facilitators, family carers and AS managers about their experiences. We assessed effectiveness on family carers' mental health using the Hospital Anxiety and Depression Scale (HADS) before and after receiving START (scores 0-42). We changed START's format by reflecting carer diversity more and increasing carer stories prominence, but core content or delivery processes were unchanged. All carers received START and attended every session. The mean fidelity score was 4.2. Mean HADS-total score reduced from baseline 18.4 (standard deviation 7.4) to follow-up 15.8 (9.7). Six (67%) carers scored as clinically depressed on baseline HADS and 2 (22%) at follow-up. Facilitators and carers rated START positively. Appropriately experienced third sector workers can be trained and supervised to deliver START and it remains effective. This has the potential for widened access at scale.

Project description:ObjectivesCarer's self-initiated management strategies of behavioural and psychological symptoms of dementia (BPSD) can inform intervention development. These strategies are affected by cultural values. Little is known about non-Western dementia carers' BPSD management strategies. This study aimed to explore self-initiated strategies in managing BPSD adopted by Chinese carers.DesignQualitative study using thematic framework method.SettingCommunity setting in Hong Kong.Participants16 dementia carers with purposive sampling to include carers of different relationships to the people living with dementia (PLwD), education level and living arrangement.ResultsSix overarching themes emerged from the data: (1) maintaining personhood in PLwD, (2) responding positively to BPSD, (3) explanation and bargaining, (4) responding negatively to BPSD, (5) controlling upsetting thoughts, and (6) getting respite care. Chinese carers treasured warm and supportive family relationships. They identified and minimised triggers to alleviate BPSD. Some carers struggled with care tasks and reacted with confrontation and avoidance. Changing attitudes and getting social and emotional support were described to manage carers' distress. Few self-care strategies including getting respite care were reported.ConclusionsCarers' self-initiated strategies largely aligned with existing theoretical frameworks in BPSD management, such as person-centred approach, and echoed Asian culture, which advocates filial piety and supportive family relationships. While these cultural values encourage the engagement of people living with dementia in the normal process of family life, they may also prevent carers from taking time away from care. Interventions could support carers by enhancing their knowledge and skills in managing BPSD, providing social and emotional support, and providing guidance in self-care. Future cross-cultural research could explore factors contributing to how carers manage BPSD and how interventions could be culturally adapted to facilitate carers to apply learnt skills in daily practice and hence benefit the people living with dementia and carer population.

Project description:People with advanced cancer and their carers experience stress and uncertainty which affects the quality of life and physical and mental health. This study aims to understand how patients and carers recover or maintain psychological well-being by exploring the strategies employed to self-manage stress and uncertainty. A longitudinal qualitative interview approach with 30 patients with advanced cancer and 30 associated family or informal carers allows the exploration of contexts, mechanisms and outcomes at an individual level. Two interviews, 4-12 weeks apart, will not only enable the exploration of individuals' evolving coping strategies in response to changing contexts but also how patients' and carers' strategies inter-relate. Patient and Carer focus groups will then consider how the findings may be used in developing an intervention. Recruiting through two major tertiary cancer centres in the North West and using deliberately broad and inclusive criteria will enable the sample to capture demographic and experiential breadth. The research team will draw on their considerable experience to ensure that the study is sensitive to a patient and carer group, which may be considered vulnerable but still values being able to contribute its views. Public and patient involvement (PPI) is integral to the design and is evidenced by: a research advisory group incorporating patient and carers, prestudy consultations with the PPI group at one of the study sites and a user as the named applicant. The study team will use multiple methods to disseminate the findings to clinical, policy and academic audiences. A key element will be engaging health professionals in patient and carer ideas for promoting self-management of psychological well-being. The study has ethical approval from the North West Research Ethics Committee and the appropriate NHS governance clearance. National Institute for Health Research (NIHR) Clinical Studies Portfolio, UK Clinical Research Network (UKCRN) Study number 11725.

Dataset Information

START (STrAtegies for RelaTives) coping strategy for family carers of adults with dementia: qualitative study of participants' views about the intervention.

Publications

START (STrAtegies for RelaTives) coping strategy for family carers of adults with dementia: qualitative study of participants' views about the intervention.

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