Reasons for non participation in the Valuing Active Life in Dementia (VALID) randomised controlled trial of a dyadic occupational therapy intervention: an interview study

Objectives There is currently little known about why people decline to participate in dyadic, psychosocial dementia research. This interview study aims to explore the reasons why people declined to participate in the Valuing Active Life in Dementia (VALID) research trial. Methods Ten family carers of people with dementia, who were part of a dyad that had declined to take part in the randomised controlled trial, participated in qualitative telephone interviews to explore their reasons for declining. Inductive thematic analysis was used to identify themes. Findings Two themes with related sub-themes were identified. 1) Protectiveness; protecting the person with dementia, themselves as carers, and their current lifestyle. 2) ‘It’s not for us’; the time commitment, and the possible unsuitability of the intervention, was seen to outweigh the perceived benefit of taking part. People with dementia were not always involved in the decision making process, with carers stating the decision not to participate was made in the usual way as all their decisions. No apparent differences between the spousal and child carers were apparent in the small sample. Conclusions Recruitment to randomised controlled trials can be considered difficult or unfair because some participants will miss out on the desired intervention. However, this study shows that concern about the time and inconvenience of being involved in the trial can put people off research participation. Identifying possible reasons for declining research participation contributes to the design of future trials and recruitment strategies, so that the potential benefit is considered relative to the time and effort involved. Offering research opportunities to people with dementia and their families at the right stage of the dementia trajectory for their needs, facilitating personalised recruitment strategies with finely tailored researcher communication skills should help maximise recruitment, reduce attrition and deliver a more successful trial

Reasons for nonparticipation in the Valuing Active Life in Dementia randomised controlled trial of a dyadic occupational therapy intervention: An interview study

Objectives: There is currently little known about why people decline to participate in dyadic, psychosocial dementia research. This interview study aims to explore the reasons why people declined to participate in the Valuing Active Life in Dementia research trial. / Methods: Ten family carers of people with dementia, who were part of a dyad that had declined to take part in the randomised controlled trial, participated in qualitative telephone interviews to explore their reasons for declining. Inductive thematic analysis was used to identify themes. / Findings: Two themes with related sub-themes were identified: (1) Protectiveness – protecting the person with dementia, themselves as carers and their current lifestyle; (2) ‘It’s not for us’ – the time commitment, and the possible unsuitability of the intervention, was seen to outweigh the perceived benefit of taking part. People with dementia were not always involved in the decision-making process, with carers stating the decision not to participate was made in the usual way as all their decisions. No apparent differences between the spousal and the child carers were apparent in the small sample. / Conclusion: Recruitment to randomised controlled trials can be considered difficult or unfair because some participants will miss out on the desired intervention. However, this study shows that concern about the time and inconvenience of being involved in the trial can put people off research participation. Identifying possible reasons for declining research participation contributes to the design of future trials and recruitment strategies, so that the potential benefit is considered relative to the time and effort involved. Offering research opportunities to people with dementia and their families at the right stage of the dementia trajectory for their needs, facilitating personalised recruitment strategies with finely tailored researcher communication skills should help maximise recruitment, reduce attrition and deliver a more successful trial

Forum: Psychotropic prescribing in HIV

Psychiatric disorders frequently co-occur with HIV, as preceding conditions or consequent to HIV infection. This potentially compromises HIV diagnosis and antiretroviral (ARV) treatment adherence. We provide a brief guide to the diagnosis and treatment of common mental disorders in people living with HIV/AIDS, including: prescribing psychotropics in HIV; neuropsychiatric side-effects of ARVs and other medications commonly prescribed in HIV; and the diagnosis and treatment of depression, anxiety, psychosis, agitation, sleep disturbance, pain, and mania. Psychotropic treatments recommended were drawn primarily from those available in the public sector of South Africa

Taking part in the community occupational therapy in dementia UK intervention from the perspective of people with dementia, family carers and occupational therapists: A qualitative study

AIM: Community Occupational Therapy in Dementia (COTiD-UK) is a manualised intervention delivered to the person with dementia and their identified family carer primarily in their own home. The focus is on enabling both the person with dementia and their family carer to engage in personally meaningful activities. This qualitative study examines the experiences of people with mild to moderate dementia, their family carers and occupational therapists, of taking part in the COTiD-UK intervention. METHOD: A purposive sample of 22 pairs of people with dementia and a family carer and seven occupational therapists took part in semi-structured interviews that were audio recorded, transcribed and inductively analysed using thematic analysis. FINDINGS: Themes from the occupational therapist interviews relate to the COTiD-UK intervention philosophy and content, aspects of delivering it in practice and thinking ahead to it becoming usual practice. Themes from the pair interviews relate to the focus of COTiD-UK sessions on meaningful occupation and working together and a sense of being able to plan to live well with dementia in the short- and longer-term as a result of the intervention. CONCLUSION: This person-centred occupation-focussed intervention was highly valued by people with dementia and their family carers and the occupational therapists delivering it

ImpRess: an Implementation Readiness checklist developed using a systematic review of randomised controlled trials assessing cognitive stimulation for dementia

Background Research reporting results of clinical trials, psychosocial or technological interventions frequently omit critical details needed to inform implementation in practice. The aim of this article is to develop an Implementation Readiness (ImpRess) checklist, that includes criteria deemed useful in measuring readiness for implementation and apply it to trials of cognitive stimulation in dementia, providing a systematic review of their readiness for widespread implementation. Methods Five electronic databases were searched. After initial screening of papers, two reviewers assessed quality and scored the included studies based on the ImpRess checklist specifically developed for this review. Results Twenty studies met the inclusion criteria. As determined by the ImpRess checklist, scores ranged from 11 to 29 out of 52. According to the checklist the most comprehensive and ready to implement version of cognitive stimulation was Cognitive Stimulation Therapy. Conclusions Reports of interventions rarely include consideration of implementation in practice. Contrary to the growing number of reporting guidelines, crucial items within the ImpRess checklist have been frequently overlooked. This study was able to show that the ImpRess checklist was feasible in practice and reliable. The checklist may be useful in evaluating readiness for implementation for other manualised interventions

Community occupational therapy for people with dementia and their family carers: A national survey of United Kingdom occupational therapy practice

Introduction: A national survey was conducted with United Kingdom (UK) occupational therapists to scope occupational therapy service provision for people with dementia and their family carers in the community. / Method: This was an online questionnaire with topics on occupational therapists’ roles, service provision, referral, assistive technology and assessment tools. Recruitment was through direct invitation, and promotion via occupational therapy networks, websites and newsletters. / Results: A total of 197 responded. Occupational therapy referrals most commonly came from the multidisciplinary team. Over half primarily undertook profession-specific work, with occupational therapy assessments the most common profession-specific task. Two-thirds of referrals for initial assessments were for people with mild-to-moderate dementia. A median of 2.5 hours for assessment/intervention was spent for each person with dementia. Almost two-thirds used the Model of Human Occupation Screening Tool. Most could prescribe personal activities of daily living equipment and Telecare, with few able to prescribe equipment for reminiscence or leisure. / Conclusion: This national survey increases knowledge of UK community occupational therapy practice and service provision for people with dementia and their family carers. It informs occupational therapists about national trends within this practice area, and development of the community occupational therapy intervention (COTiD-UK) as part of the Valuing Active Life in Dementia research programme