View Of Care Research Articles

What are the priorities of consumers and carers regarding measurement for evaluation in mental healthcare? Results from a Q-methodology study.

The purpose of this study was to identify and describe common views of people with lived experience of mental health challenges - consumers and carers, families and supporters - of what they consider the most important measures to include in health economic evaluations which assess the incremental value of competing options in mental health care. Participants (n = 111) were people living in the state of Victoria, Australia, who identified as consumers of mental healthcare (n = 38); carers, family members and/or supporters (n = 43); or both (n = 30). Factor analysis based on Q-Methodology was used to identify clusters of people who hold similar viewpoints. Common viewpoints were described in terms of the characteristics of the group, and a qualitative interpretation was conducted on the basis of distinguishing statements and quotes provided in participants' own words. We identified four common views: (1) safety before all else, prioritizing physical, sexual and psychological safety; (2) hope and partnership in processes of care; (3) physical and emotional health and wellbeing; and (4) care access, continuity and partnership with families. Although different priorities were identified for each viewpoint, key priority areas that were common to all views were having an environment in the health service that fosters respect and dignity, and that consumers feel heard and listened to. In sub-group and qualitative analyses, differences were observed regarding the likelihood of consumers and carers holding each of the views, as well as by age group. While some differences were noted between the views of consumers and carers and different age groups, there was also common ground regarding what outcomes are of most importance to measure. Including these measures in evaluation frameworks would provide a way of focussing mental healthcare decisions on the aspects of mental healthcare that are of most value to consumers and carers, thereby addressing an important shortcoming of current approaches to decision-making in mental healthcare.

Carer-led CBT input for young people in residential care: views of carers

ABSTRACT In the literature, there are various models of the use of CBT to support children and young people in residential settings. However, the extent of the involvement of residential staff (carers) in the implementation of CBT is unclear, and little is known about carers’ views on the use of CBT in residential care. In this exploratory study, 12 employees of a private residential care company participated in semi-structured, face-to-face interviews to give their views on a number of CBT techniques, and how carers could be supported to implement them. Thematic analysis identified three overarching themes: Difficulties of young people in residential care, Current practices to support young people in residential care, and Integration of Carer-led CBT into current practice. The study found that formal, formulation-driven CBT was not part of the carers’ current practice, however some techniques they used were broadly similar to CBT. Implications of the findings are that current practices could be expanded and enhanced through training and supervision of carers to give them more tools to support young people in residential care. Ways of integrating carer-led CBT into current practice are discussed.

Ofsted's Big Listen

Ofsted's recent listening exercise was its biggest ever consultation, seeking the views of professionals, children, parents and carers. Jo Stephenson looks at key areas for change highlighted by the responses

Young people and parent or carers views on type 2 diabetes mellitus care in england and wales - insights from the PREM survey report

Young people and parent or carers views on type 2 diabetes mellitus care in england and wales - insights from the PREM survey report

Prevention of osteoradionecrosis in patients with head and neck cancer treated with radiation therapy.

Osteoradionecrosis is a long-term, serious side effect of head and neck radiation therapy and is associated with significant morbidity and quality of life issues. This paper sought to determine consensus on the prevention and management of osteoradionecrosis by an international panel of multidisciplinary professionals expert in the management of patients with head and neck cancer using a Delphi methodology. Unique to this work is our direct inclusion of the views of patients and carers in our findings. This study reached consensus on the importance of pre and post oral health assessment and education for patients with head and neck cancer. This was also noted by the patients and carers who took part in the study. This work highlights the need for a standardized oral health assessment tool and multidisciplinary care of patients to prevent and manage osteoradionecrosis.

Research priorities for medically not yet explained symptoms expressed by patients, carers, and healthcare professionals in the Netherlands following the James Lind Alliance priority setting partnership approach

ObjectiveExperiencing physical symptoms that are medically not yet explained (MNYES) is associated with considerable burden in daily life. Research priorities in this area have been primarily investigator-driven. The present study identifies the top 10 research priorities, incorporating the views of patients, carers and healthcare professionals. MethodsThis study used the Priority Setting Partnership approach in collaboration with the James Lind Alliance (JLA). The priority setting approach combines survey-based data from patients with a specific disorder/condition and relevant stakeholders (i.e., caregivers and healthcare professionals) with input from group meetings and a final priority setting consensus meeting. There were three consecutive phases: (1) online survey with an open-ended question to collect topics for future scientific research (N = 345 participants); (2) an online survey among stakeholders to prioritise the research questions generated in Phase 1 (N = 400); and (3) a final multi-stakeholder consensus meeting, held over two half-days to determine the final top 10 research priorities for the Netherlands (day 1 N = 25, day 2 N = 24). ResultsPhase 1 resulted in 572 topics, which were reduced to 37 summary research questions. Phase 2 resulted in 18 research priorities, that were ranked and the top 10 priorities were established during the final consensus meeting. The top 10 research priorities included three main themes: optimising efficient diagnosis and treatment, aetiology and prevention, and coping with MNYES. ConclusionThe top 10 priorities provide insight into what is most important for future research into MNYES from the perspective of patients, carers and healthcare professionals.

Digital First Primary Care for those with multiple long-term conditions: a rapid review of the views of stakeholders.

General practices are facing challenges such as rising patient demand and difficulties recruiting and retaining general practitioners. Greater use of digital technology has been advocated as a way of mitigating some of these challenges and improving patient access. This includes Digital First Primary Care, when a patient's first contact with primary care is through a digital route, either through a laptop or smartphone. The use of Digital First Primary Care has been expedited since COVID-19. There is little evidence of staff experiences of using Digital First Primary Care with more complex patients, such as those with multiple long-term conditions. To understand the experiences of those with multiple long-term conditions of Digital First Primary Care from the perspectives of healthcare professionals and stakeholders. This was a qualitative evaluation, comprised of four distinct work packages: Work package 1: Locating the study within the wider context, engaging with literature, and co-designing the study approach and research questions with patients. Work package 2: Interviews with health professionals working across general practice and key expert topic stakeholders, including academics and policy-makers. Work package 3: Analysis of data and generation of themes, and testing findings with patients. Work package 4: Synthesis, reporting and dissemination. The study commenced in January 2021 and in total 28 interviews were conducted with 14 health professionals and 15 stakeholders between January and August 2022. From the perspective of health professionals, Digital First Primary Care approaches could enable patients to speak with a clinician more quickly than traditional approaches. Those with multiple long-term conditions could submit healthcare readings from home, though health professionals felt patients may struggle navigating digital systems not designed to capture the nuances associated with living with multiple conditions. Clinicians expressed preferences for seeing patients face-to-face, particularly those with multiple long-term conditions, to identify non-verbal cues about a patient's health. Digital First Primary Care approaches provided an opportunity for clinicians to engage with the carers of patients living with multiple long-term conditions, yet there were concerns around obtaining consent and confidentiality. There remain debates among stakeholders about the nature and extent to which Digital First Primary Care impacts on staff workload. At the time of data collection, general practices were facing considerable pressure to deliver care and respond to the COVID-19 pandemic. While it was originally intended that the study would include interviews with patients with multiple long-term conditions and their carers, none of the general practices that took part in the study were willing and/or able to recruit patients and carers in the time available. The rapid implementation of Digital First Primary Care, at a time of immense pressures, meant there has been little time for considering the impact on patients, including those with multiple long-term conditions. The impacts on care continuity depended largely on how surgeries implemented their approaches. Staff and stakeholders felt that Digital First Primary Care, as an additional route for accessing primary care, could be useful for patients with multiple long-term conditions but not at the expense of face-to-face consultations. Future research obtaining patient and carer views of digital-first approaches, understanding the impacts on carers and how approaches are designed with patients with more complex conditions in mind, is essential. This award was funded by the National Institute for Health and Care Research (NIHR) Health and Social Care Delivery Research programme (NIHR award ref: 16/138/31) and is published in full in Health and Social Care Delivery Research; Vol. 12, No. 21. See the NIHR Funding and Awards website for further award information.

Patients’ and carers’ views on research priorities in prehabilitation for cancer surgery

IntroductionThe views of patients and carers are important for the development of research priorities. This study aimed to determine and compare the top research priorities of cancer patients and carers with those of multidisciplinary clinicians with expertise in prehabilitation.Materials and methodsThis cross-sectional study surveyed patients recovering from cancer surgery at a major tertiary hospital in Sydney, Australia, and/or their carers between March and July 2023. Consenting patients and carers were provided a list of research priorities according to clinicians with expertise in prehabilitation, as determined in a recent International Delphi study. Participants were asked to rate the importance of each research priority using a 5-item Likert scale (ranging from 1 = very high research priority to 5 = very low research priority).ResultsA total of 101 patients and 50 carers participated in this study. Four areas were identified as research priorities, achieving consensus of highest importance (> 70% rated as “high” or “very high” priority) by patients, carers, and clinical experts. These were “optimal composition of prehabilitation programs” (77% vs. 82% vs. 88%), “effect of prehabilitation on surgical outcomes” (85% vs. 90% vs. 95%), “effect of prehabilitation on functional outcomes” (83% vs. 86% vs. 79%), and “effect of prehabilitation on patient reported outcomes” (78% vs. 84% vs. 79%). Priorities that did not reach consensus of high importance by patients despite reaching consensus of highest importance by experts included “identifying populations most likely to benefit from prehabilitation” (70% vs. 76% vs. 90%) and “defining prehabilitation core outcome measures” (66% vs. 74% vs. 87%). “Prehabilitation during neoadjuvant therapies” reached consensus of high importance by patients but not by experts or carers (81% vs. 68% vs. 69%).ConclusionThis study delineated the primary prehabilitation research priorities as determined by patients and carers, against those previously identified by clinicians with expertise in prehabilitation. It is recommended that subsequent high-quality research and resource allocation be directed towards these highlighted areas of importance.

Evaluation of lived experience Peer Support intervention for mental health service consumers in Primary Care (PS-PC): study protocol for a stepped-wedge cluster randomised controlled trial

BackgroundThe demand for mental health services in Australia is substantial and has grown beyond the capacity of the current workforce. As a result, it is currently difficult for many to access secondary healthcare providers. Within the secondary healthcare sector, however, peer workers who have lived experience of managing mental health conditions have been increasingly employed to intentionally use their journey of recovery in supporting others living with mental health conditions and their communities. Currently, the presence of peer workers in primary care has been limited, despite the potential benefits of providing supports in conjunction with GPs and secondary healthcare providers.MethodsThis stepped-wedge cluster randomised controlled trial (RCT) aims to evaluate a lived experience peer support intervention for accessing mental health care in primary care (PS-PC). Four medical practices across Australia will be randomly allocated to switch from control to intervention, until all practices are delivering the PS-PC intervention. The study will enrol 66 patients at each practice (total sample size of 264). Over a period of 3–4 months, 12 h of practical and emotional support provided by lived experience peer workers will be available to participants. Scale-based questionnaires will inform intervention efficacy in terms of mental health outcomes (e.g., self-efficacy) and other health outcomes (e.g., healthcare-related costs) over four time points. Other perspectives will be explored through scales completed by approximately 150 family members or carers (carer burden) and 16 peer workers (self-efficacy) pre- and post-intervention, and 20 medical practice staff members (attitudes toward peer workers) at the end of each study site’s involvement in the intervention. Interviews (n = 60) and six focus groups held toward the end of each study site’s involvement will further explore the views of participants, family members or carers, peer workers, and practice staff to better understand the efficacy and acceptability of the intervention.DiscussionThis mixed-methods, multi-centre, stepped-wedge controlled study will be the first to evaluate the implementation of peer workers in the primary care mental health care sector.Trial registrationAustralian New Zealand Clinical Trials Registry (ANZCTR) ACTRN12623001189617. Registered on 17 November 2023, https://www.anzctr.org.au/Trial/Registration/TrialReview.aspx?id=386715

Experiences of support received by carers of people who are involuntarily admitted to hospital under the Mental Health Act: qualitative study of carers' perspectives.

Carers of people who are involuntarily admitted to hospital report feeling isolated and unsupported by services. The Independent Review of the Mental Health Act (MHA) recommended that carers be supported. However, no research has directly explored what type of support carers would find most helpful when a relative/friend is involuntary admitted. To explore carers' experiences and views around the support they want to receive when their relative/friend is involuntarily admitted under the MHA. A total of 22 one-to-one interviews with carers were conducted online at three sites across England. Audio recordings of the interviews were transcribed, and data were analysed with thematic analysis. Four main themes were identified: (a) heterogeneity in the current support for carers, (b) information about mental health and mental health services, (c) continuous support, and (d) peer support and guidance. Carers reported receiving support from professionals, peers and relatives, but this was unstructured, and the extent of support varied across carers. Carers reported wanting more information about mental health services, and for this information to be consistent. Carers also reported wanting emotional support from a single, continuous person, helping them establish a more personal and sincere connection. Peers were also identified as important in the provision of carer support, allowing carers to feel reassured and understood in their experience. The support received by carers is currently unstructured. To meet the MHA review recommendations, carers of patients who are involuntarily admitted should be allocated a named contact person, ideally with lived experience, to offer information and personal continuity of support.

Young carers' experiences of services and support: What is helpful and how can support be improved?

Globally, many children and young people provide support to family members who have poor physical or mental health, are disabled, or misuse drugs and alcohol. These young carers are at higher risk of poorer education, employment, health, and social participation outcomes compared to their peers without caring responsibilities. In the UK, awareness of the challenges faced by young carers, and a framework of their legal rights, are relatively well-developed. However, it is unclear how support can most effectively be provided. Taking a qualitative approach we explored experiences and views of young carers (aged 9-25), conducting focus groups or interviews with 133 young carers and 17 parent care recipients. We explored what aspects of services and support are seen as helpful, valued, and acceptable to young people, and what could be improved. A reflexive, thematic analysis was conducted. Valued support came from: young carers groups (including peer support), school-based and mental health support, and support for the care recipient. Helpful aspects of support included someone who listens and understands, and can be trusted not to break confidentiality; involving the young person in information, decision-making and planning (sometimes including regarding the care recipient); and finding and linking to other services. There was a difficult balance for practitioners between being perceived as proactive, persistent or intrusive when offering support to a young carer, but it was important to allow opportunities for young carers, and those they care for, to change their minds about when and whether to access support. Many interactions were perceived as unhelpful or threatening to the family, and there was often not enough of the type of support that was valued. Sharing of positive experiences can be beneficial for both people seeking support and those delivering it; key messages on what is helpful from the perspective of young carers can help support and shape practice approaches.

Views of Service Users, Their Family or Carers, and Health Care Professionals on Telerehabilitation for People With Neurological Conditions in Ghana: Qualitative Study.

Up to 50% of people in low- and middle-income countries do not receive the rehabilitation they require. Telerehabilitation has the potential to improve access to neurorehabilitation services especially in low- and middle-income countries. Although there are reports of the barriers and facilitators to telerehabilitation in such settings, almost all are anecdotal. Furthermore, family or carers have a significant influence on the adoption and success of telerehabilitation, but their views have not been reported. This study aimed to investigate the views of service users, their family or carers, and health care professionals (HCPs) on telerehabilitation for people with neurological conditions in Ghana. Two focus groups were held at Komfo Anokye Hospital in Kumasi, Ghana: one in person for service users (n=11) and their family or carers (n=9), conducted in the Ghanaian language of Twi, and one hybrid for HCPs (n=18) conducted in English. The mean (SD) age of the service users was 59.8 (8.6) years; 5 users had a stroke and 6 had Parkinson disease. The HCP group consisted of 7 speech and language therapists, 3 physiotherapists, 3 occupational therapists, 3 medical staff, 1 nurse, and 1 industry representative. Focus groups were semi-structured and explored previous experiences of telerehabilitation, perceived benefits and challenges, and solutions to overcome these challenges. Focus groups were audio transcribed, and the service user transcript was translated into English. The resulting transcripts were analyzed using thematic analysis. Overall, participants were positive about the role of telerehabilitation but recommended hybrid delivery, with in-person rehabilitation in the early stages and telerehabilitation in the later stages. In relation to telerehabilitation in Ghana, there were 3 main themes: benefits, challenges or barriers, and implementation. Benefits included the convenience and lower cost for service users, the higher dose of therapy possible, and increased access for people in remote areas. However, challenges included lack of a stable internet connection, cost of phones and data packages, and low levels of literacy. Implementation issues included cultural relevance, information governance, and the platform used to deliver telerehabilitation, with most participants being familiar with WhatsApp. Telerehabilitation has the potential to be a useful method of delivering rehabilitation to people with neurological conditions in Ghana, especially in a hybrid rehabilitation model with telerehabilitation augmenting in-person sessions. However, many people were unaware of telerehabilitation, and challenges such as a reliable internet connection, cultural relevance, and costs need to be addressed. Clinical trials of low-cost telerehabilitation interventions contextualized to the specific user group are required.

Families' experiences of the Low Arousal Approach: a qualitative study.

Parents and carers supporting a family member presenting with behaviors of concern experience heightened stress. The Low Arousal Approach is a crisis management strategy which recognizes that stress, or physiological arousal, can be expressed through behaviors of concern. This approach aims to equip parents and carers to manage behaviors in a person-centered and non-confrontational way. There is a paucity of published research exploring the experiences of families applying this approach. Seventeen parents who had received training in the Low Arousal Approach were interviewed to gain their perspectives on supporting their family members using this approach. Thematic analysis revealed themes relating to parental stress, which was related to external pressures, isolation, family stress, and challenges in their caring role. They described encountering negative narratives relating to self-criticism and negative judgments from others. Training in the Low Arousal Approach was related to being empowered through access to evidence, increased confidence, and increased ability to advocate for their family member's needs. Low Arousal was described as a "lifestyle" that enabled increased coping for the family unit as a whole. Findings indicate that it is vitally important to recognize the views of parents and carers, and these are equally as important as the views of professionals. We must understand parents' and carers' needs in order to provide adequate support.

Parents’ and carers’ attitudes to the use of digital technology and its role in the care of children with complex needs

Introduction: Parent/carers of disabled children want timely and personalized support. Research suggests that technology may address some limitations associated with traditional methods of communication with therapists (e.g. letter, telephone). This exploratory study examined United Kingdom (UK) parents and carers views on the use of digital technology (i.e. computers/phones) in supporting their child and the potential for its greater use in the care of children with complex needs. Methods: An online survey was distributed via special schools and support forums/networks. Questions explored use of and attitudes to digital technology in the care of children with complex needs. Descriptive statistical analyses and content analyses were undertaken on the data. Results: Respondents were 43 parents/carers whose children used rehabilitation services prior to the COVID-19 pandemic. The majority used digital technology frequently to support their child and saw the potential for greater use in rehabilitation services – provided this was not at the expense of in-person therapist contact. Conclusion: Parents and carers held positive views of digital technology as a tool to support their child and enhance rehabilitation services. Recommendations include regular service consultation on parental/child attitudes to digital service delivery and longitudinal studies to assess related health outcomes.

Translating patient needs into medical device development: co-design of a photoprotection visor for Xeroderma Pigmentosum using qualitative interviews

IntroductionPeople with Xeroderma Pigmentosum (XP) have a heightened sensitivity to ultraviolet radiation (UVR) and are advised to wear photoprotective clothing including a visor covering the face and neck. Photoprotective visors are homemade and predominately worn by children with decreasing frequency as age increases. To improve upon the current design and efficacy we were tasked with developing a prototype visor to meet patients’ needs.MethodsAdopting a codesign methodology, patients’ experiences of wearing a visor and patient and carer views of emerging prototypes were explored during interviews. A thematic analysis was conducted in parallel with data collection and themes were interpreted into design cues; desirable attributes of a visor that would counteract the negative user experiences and meet the requirements described by patients and carers. The design cues guided the iterative development of prototypes by academic engineers.ResultsTwenty-four interviews were conducted with patients and carers. Thematic analysis resulted in the following five themes: Being safe from UVR exposure; self-consciousness; temperature effects; acoustic difficulties; and material properties. The following design cues were developed from the themes respectively; materials and design with high UVR protection; ability to customise with own headwear; ventilation to reduce steaming up; acoustic functionality to enable hearing and speech; foldable, portable, and easy to put on and take off.ConclusionsIt is important to understand people’s experiences of using medical devices to improve their safety, efficiency and user satisfaction. The user experience themes and design cues, informed the iterative development of low fidelity visor prototypes as part of a codesign process. These design cues and responses to the prototypes are guiding commercial manufacturing and regulatory approval. The visor can then be prescribed to patients, providing an equitable service of care.

What are the views of adults with an intellectual disability (AWID), carers and healthcare professionals on a community falls management programme for AWID: a qualitative interview study in the UK

ObjectivesThe aim of this study was to refine a draft of the ACTiON FALLS LD programme based on the views of adults with an intellectual disability (AWID), carers and healthcare...

Improving end-of-life care for people with dementia: a mixed-methods study

BackgroundImproving palliative and end-of-life care for people with dementia is a growing priority globally. This study aimed to integrate multiple perspectives on end-of-life care for people with dementia and carers, to identify clinically relevant areas for improvement.MethodsThe mixed-methods study involved surveys, interviews, and workshops with two participant groups: healthcare professionals and carers (individuals who provided care and support to a family member or friend). Healthcare professionals were invited to complete an online adapted version of the Australian Commission on Safety and Quality in Health Care, End-of-Life Care Toolkit: Clinician Survey Questions. Carers completed a hard copy or online adapted version of the Views of Informal Carers—Evaluation of Services (Short form) (VOICES-SF) questionnaire. Interview schedules were semi-structured, and workshops followed a co-design format. Findings were integrated narratively using a weaving approach.ResultsFive areas in which we can improve care for people with dementia at the end of life, were identified: 1) Timely recognition of end of life; 2) Conversations about palliative care and end of life; 3) Information and support for people with dementia and carers; 4) Person-and-carer-centred care; 5) Accessing quality, coordinated care.ConclusionsThere are multiple areas where we can improve the quality of end-of-life care people with dementia receive. The findings demonstrate that the heterogeneous and challenging experiences of living with and caring for people with dementia necessitate a multidisciplinary, multifaceted approach to end-of-life care. The identified solutions, including care coordination, can guide local development of co-designed models of end-of-life care for people with dementia.

Patient, parent and carer perspectives surrounding expedited paediatric epilepsy surgery

ObjectiveMost paediatric epilepsies with MRI visible lesions do not respond to antiseizure pharmacotherapy. Such medication resistance, which often takes years to become formally defined, is commonly required for surgical candidacy. Expedited surgical referral at lesional epilepsy diagnosis may result in better seizure, cognitive and developmental prognoses. This study explored the views of patients, parents and carers regarding epilepsy surgery, treatment priorities, and participation in a proposed expedited surgery trial. Methods205 patients, parents and carers (61% UK-based, 26% North American) responded to electronic surveys from February to May 2022. Participants were recruited through social media sites, epilepsy charities and societies. Categorical choice and free-text questions were used to investigate participant perspectives, and Pearson’s chi-squared test was utilised to detect meaningful differences amongst respondent subgroups. ResultsAlmost 90% of respondents who had experienced epilepsy surgery (either themselves or their child) reported seizure cessation or reduction. Postoperative outcome measures prioritised most frequently were seizure freedom (66%), quality of life (47%), seizure severity (30%), seizure frequency (28%) and independence (27%). Most participants support expedited surgery in suitable patients (65%), with just over half (51%) willing to participate in the proposed trial. Many participants (37%) were undecided, often due to fears surrounding neurosurgery. Subgroup perspectives were broadly similar, with more parents and caregivers favouring expedited surgery compared to patients (p = .016) and more UK-based participants willing to take part in an expedited surgery trial compared to those from North America (p = .01). ConclusionsPatients, parents and carers are open to considering expedited surgery for lesional epilepsies and would support a trial exploring this approach. Priorities from treatment were largely similar between participant subgroups, with seizure, quality of life and neuropsychological outcomes ranked highly. Accounting for these preferences will facilitate the delivery of a trial that is patient- and caregiver-focused, enhancing feasibility, satisfaction and benefit for prospective participants.

Can You Hear Us? The Parent Consultation for the Review of Children’s Social Care in Northern Ireland Carried Out on Behalf of Children in Northern Ireland (CiNI) 2022–23

ABSTRACT This paper draws upon evidence captured from a parent consultation exercise conducted by Helen Dunn (author) and Paula Keenan on behalf of Children in Northern Ireland (CiNI) for the Department of Health as part of the Review of Children’s Social Care led by Professor Ray Jones during 2022–23. CiNI is the regional umbrella organisation for the children’s sector in Northern Ireland. This paper will be of interest to those who are keen to hear parents and carers views and their experiences of Social Work and Social Care in Northern Ireland. The Review also engaged Voice of Young People in Care (VOYPIC) a charity for children and young people with a lived experience of care in Northern Ireland. They formed an Experts by Experience Reference Group of young people who were currently in or had experience of the care system.

Carers’ and therapists’ views of internet-delivered guided self-help acceptance and commitment therapy for family carers of people with dementia (iACT4CARERS): a qualitative study in the context of ethnic minority families

Abstract This study aimed to explore the views of family carers of people living with dementia from ethnic minority groups and their therapists on internet-delivered, self-help acceptance and commitment therapy for family carers (iACT4CARERS), enhanced with additional therapist guidance. To achieve this, a qualitative approach with semi-structured interviews was employed with ethnic minority carers who completed Enhanced iACT4CARERS (n=9) and therapists who supported them throughout the programme (n=5). The interviews were audio-recorded, transcribed and analysed using framework analysis. Four over-arching themes were identified: (1) Value of the programme to ethnic minority carers, (2) Barriers for ethnic minority carers, (3) Sense of connectedness through written feedback, and (4) Sense of connectedness through one-to-one sessions. Theme 1 reflected that ethnic minority carers valued ACT techniques, highlighting their usefulness and simplicity, leading to perceived benefits. Theme 2 revealed the irrelevance of examples provided of carer experiences throughout the programme due to differences in family carers’ experiences of providing care within ethnic minority communities. Theme 3 highlighted that carers’ engagement with the programme was facilitated by feelings of validation and encouragement received from their therapist via weekly written feedback. Finally, Theme 4 highlighted that additional one-to-one support sessions allowed both carers and therapists to develop strong therapeutic relationships. This enhanced subsequent text-based online interactions, allowing carers to be more open and engaged. Also, therapists reported that a strong sense of connectedness helped them to tailor their feedback. Enhanced iACT4CARERS that uses carers’ experiences more relevant to ethnic minority communities may be more acceptable. Key learning aims (1) To understand the views of family carers of people living with dementia from ethnic minority groups and their therapists on internet-delivered, self-help acceptance and commitment therapy (ACT), which has been found to be feasible and acceptable with White British carers. (2) To understand whether additional one-to-one support can help develop effective therapeutic relationships and thus improve the experiences of carers in completing the programme. (3) To learn whether any cultural adaptations are needed to improve the acceptability of internet-delivered self-help ACT among this population.