Carer Involvement Research Articles

Stakeholder perspectives on intensive support teams for adults with intellectual disabilities who display behaviour that challenges in England.

Adults with intellectual disabilities often display behaviour that challenges that is a result of biological differences, psychological challenges, and lack of appropriate social support. Intensive Support Teams (IST) are recommended to support the care needs of this group and avoid hospitalisation. However, little attention has been paid to the perspectives of stakeholders who manage, work in, or use ISTs. Interviews and focus groups were conducted with 50 stakeholders (IST service managers and professionals, adults with intellectual disabilities, and family and paid carers) of ISTs. Services operated according to one of two service models previously identified in ISTs in England (enhanced or independent). Thematic analysis identified accessible and flexible support, individualised care, and the involvement of carers and other relevant agencies in management plans and reviews as features of good IST care highlighted by all stakeholder groups. IST managers and professionals described the key challenges of current IST provision as unclear referral criteria, limited interfaces with other local services, and perceived threats associated with funding and staff retention. Findings were similar between the two IST models. ISTs are able to offer care and specialist support that is valued by families, service users and other care providers. However, they face several operational challenges that should be addressed if ISTs are to reach their potential along with community intellectual disability services in supporting adults with intellectual disabilities who display behaviour that challenges in the community.

Listening to First Nations women’s voices, hearing requests for continuity of carer, trusted knowledge and family involvement: A qualitative study in urban Darwin

ProblemAustralian First Nations women are more likely to commence care later in pregnancy and underutilise maternal health services than non-First Nations women. BackgroundDisrespectful maternity care is a major barrier to care-seeking in pregnancy, often resulting in later commencement and underutilisation of care. AimWe aimed to identify barriers and enablers to pregnancy-related care-seeking for Australian First Nations women living in the Darwin region through yarning about their experiences of pregnancy care. MethodsTen Australian First Nations women shared stories about their pregnancy care journeys. Yarns took place at a time and location determined by the women, with recruitment continuing until saturation was reached. FindingsEmerging themes included a desire for continuity of carer, particularly with midwives; access to trustworthy information, enabling informed decision-making; and a need to have family involved in all aspects of care. No specific barriers were identified within this cohort DiscussionUniversal access to continuity of carer models would provide women with the relational care they are asking for as well as address other identified needs, such as a desire for information relevant to their pregnancy; and space for partners/family members to be involved. The themes that emerged provide a picture of what a positive, respectful pregnancy care experience could be for First Nations women within the Darwin Region, thus enabling care-seeking in pregnancy. ConclusionAlthough the public sector and Aboriginal Controlled Community Health Organisations currently provide continuity of carer models, robust systems ensuring these models are made available to all women are lacking.

Digital undergraduate medical education and patient and carer involvement: a rapid systematic review of current practice

BackgroundInvolving patients and carers in medical students’ learning aims to centralise the perspective of healthcare users and supports our future medical workforce in the development of key skills. Medical schools are increasingly using digital technology for teaching and it is timely to understand how to maintain patient and carer involvement in this context.MethodsOvid MEDLINE, Ovid EMBASE and medRxiv were searched in October 2020 and reference lists of key articles were hand searched. Eligible studies reported authentic patient or carer involvement in undergraduate medical education where technology was also used. Study quality was assessed by the Mixed Methods Appraisal Tool (MMAT). Levels of patient or carer involvement were assessed using Towle et al.’s (2010) taxonomy, from Level 1 (lowest level) to Level 6 (highest level).ResultsTwenty studies were included in this systematic review. In 70% of studies, patients and carers featured in video or web-based case scenarios with no interaction between healthcare users and students. The remaining 30% of studies reported real-time interactions between students and patients via remote clinical encounters. Digital teaching sessions involving patients or carers were perceived to be valuable by students and educators, and increased student engagement, patient-centred attitudes, clinical knowledge, and communication skills. No studies reported the perspective of patients or carers.DiscussionDigital technology has not yet driven higher levels of patient and carer involvement in medical training. “Live” interactions between students and patients are becoming more common but challenges need addressing to ensure positive experiences for all involved. Future teaching should enhance the role of patients and carers in medical education and support them to overcome any potential barriers to doing so remotely.

Support Needs in Carers of People With Parkinson's From Early to Later Stages: A Qualitative Study With 36 Carers in 11 European Countries.

Parkinson's Disease (PD) is associated with considerable carer burden, but there has been little qualitative research on the support needs of carers of People with Parkinson's (PwP). Semi-structured in-depth interviews with carers of PwP in 11 European countries. Interviews with 36 carers of PwP were analysed. At the time of diagnosis, carers often felt that they had a role in helping get a diagnosis and then in dealing with the impact of the diagnosis on the family. Information on medication was seen as particularly important for carers, and many of the carers felt that their informational needs differed from that of the PwPs. Many of the carers also felt that they needed to be present at all appointments to request referrals or ask for medication changes. Carers of those in the later stages of the disease often reported feeling isolated and not having any time for themselves. The involvement of carers should be addressed more actively in the management of Parkinson's.

A mixed methods evaluation of a compassion‐focused therapy group intervention for people with an intellectual disability

AbstractBackgroundThis study investigated the use of a Compassion‐Focused Therapy (CFT) group as a psychological intervention for a group of adults with an intellectual disability with a range of psychological issues.MethodFour clients attended the group, which was facilitated by three trainee Clinical Psychologists. The group consisted of 8 weekly sessions.FindingsStandardised outcome measures showed an increase in psychological well‐being and self‐compassion for all participants postintervention. Two participants showed an increase in psychological distress, while two participants reported decreases in this area. Scores on measures of self‐criticism fell for two participants, increased for one participant and showed no change for one participant. Qualitative interviews were conducted with postgroup with all group members (clients and facilitators). Thematic analysis identified two superordinate themes relating to the accessibility of the group content, and interpersonal aspects of the group.ConclusionThe results suggest that clients enjoyed and benefitted from the group. Challenges, such as lack of carer involvement, were identified, and recommendations for future CFT groups are made.

461 Developing a Carer-Led Intervention Supporting older people and their carers with Medicines Management through pathways of care using interviews: a qualitative service evaluation

Abstract Introduction Previous studies have shown that informal carers involved in assisting with patients’ medicines have considerable knowledge about patients’ usual medication management (1). This could be helpful for healthcare professionals (HCPs) in secondary care caring for such patients and facilitate their safe discharge. However, carer involvement is often lost during patients’ hospital admissions, as carers report feeling excluded from decisions surrounding patients’ medicines management (2). Aim To assess the opinions of HCPs, patients and carers on strategies in place for HCPs to (i) identify informal carers during patients’ hospital admissions and (ii) aid communication between HCPs and carers with regards to medicines management during an inpatient stay and after discharge. Methods Semi-structured interviews were conducted with HCPs (doctors, nurses, pharmacists, occupational therapist and physiotherapist), adult patients, and their unpaid carers assisting with medication at home. Participants were recruited from three elderly care wards at one London teaching hospital. HCPs were approached directly; patients and carers were recruited with assistance from ward HCPs. Interviews explored participants’ opinions on current and potential methods for HCPs to identify informal carers, as well as how communication between HCPs and carers about medicines management could be improved. Interviews were transcribed verbatim and analysed using thematic analysis. Results Sixteen interviews were conducted. Thirteen participants provided demographic data, eight identified as female and five as male. Six identified as white British, one as Indian and one as Asian. A number of barriers to effective identification of carers were identified. Some HCP and carer participants were unaware of the carer’s identification lanyard provided by the hospital, which could help identify patients’ informal carers. Carers and HCPs suggested information about who assisted with medicines was not always passed between different HCPs, and that this should be on a central record that is assessed by all HCPs. Carers expressed the need to be kept updated on changes to medicines throughout the patient’s stay. Carers and HCPs made suggestions to improve this, including having a central point of contact to update carers during a patient’s hospital admission, having ‘five minute update’ discussions throughout admission, and involving carers in multidisciplinary interactions. Finally, carers suggested having access to written information about medication changes, especially before discharge. Carers and HCPs also identified lack of post-discharge follow up communication. Some HCPs and carers proposed community teams lead on follow-up, but HCPs highlighted the need for a clear referral process between secondary and primary care. Other carers and HCPs suggested the HCP teams looking after the patient during admission should follow-up with patient and carer shortly after discharge. Conclusion A strength of this service evaluation was identification of possible solutions to the problems identified. By asking about the personal experience of patients and carers, we identified suggestions for improvement. The main limitation is potential lack of generalisability, as interviews were only conducted at one hospital. The findings will be used to inform the development of a tool to improve communication and carer involvement in the medicines management process during an inpatient admission and after discharge.

The legacy of COVID-19 in dementia community support: ongoing impacts on the running of meeting centres

PurposeThe COVID-19 pandemic caused major disruption in community support for vulnerable older people and is thought to have exacerbated existing issues within UK adult social care. This study aims to examine the legacy of that disruption on how meeting centres for people affected by dementia have been impacted in continually evolving circumstances.Design/methodology/approachSemi-structured interviews and focus group discussions were conducted at three meeting centre case study sites. Ninety-eight participants, including people living with dementia, family carers, staff, volunteers, trustees and external partners, were asked about the impact and legacy of the pandemic upon meeting centres. A thematic analysis was carried out on the data.FindingsTen themes were identified: ability to re-open venues; increased health decline and loss of members due to isolation; closure or halting of linking services and dementia community support; disruption to diagnosis and referrals; increase in outreach, building communities and overall reach; digital access and use of technology (boom and decline); changes to carer involvement and engagement; continued uncertainty and changes to funding, resources and governance; staff and volunteer recruitment issues; and relief at/wish for return to pre-pandemic norms.Originality/valueThis paper offers new insight into a still-developing situation, namely, the legacy effects of the pandemic upon third-sector community support for people affected by dementia and the health and social care services that support it. The reduction in maintenance of pandemic-era technological innovations is a key finding.

Carer involvement in the assessment of personal recovery: A naturalistic study of assertive community treatment in Norway.

The user and carer movements have come a long way in becoming embedded in mainstream mental health services for individuals with serious mental illness. However, implementing recovery-oriented practice continues to be plagued by an individualistic clinical focus. The carers do not feel integrated despite policies and best intentions. The implementation of Assertive Community Treatment (ACT) provided an opportunity to involve the carers and compare their assessment of personal recovery with the users. The aims of this study were to examine (i) how family carers and users differed in their assessment of personal recovery, (ii) whether familial and personal relationships influenced how carers assess personal recovery of users, and (iii) if the experience of family carers with the ACT team was associated with personal recovery. The naturalistic, explorative study recruited 69 users and 36 family carers from 12 Norwegian ACT teams. The users and carers assessed the user's personal recovery. Family carers also reported their experience and satisfaction with the ACT teams. Analyses included independent and paired sample T-tests and correlation analysis. Family carers were significantly more conservative than the users' assessment of the intrapsychic and interpersonal subscales of personal recovery. The pattern held true whether the family carers were matched to the users or part of the total sample. Lastly, there was a significant negative correlation between the family carer's experience of cooperation with the ACT team and their assessment of the user's intrapersonal process of recovery. The results of our study were consistent with previous research on carer involvement in MHS. However, it is the first study that engaged carers and assessed personal recovery of the users of ACT services. Discrepancy between carers and users is the rule. Clinicians are encouraged to embrace the discrepancy and diversity carers bring and learn the methodology of multi-informant assessments. There also is a need to address, update, and integrate the personal, familial, and relational aspects of recovery. Modification of recovery measures such as QPR and their creative use with carers has the potential to generate valuable third-party information and to involve them meaningfully in mental health services.

Dementia and comorbid cancer: challenges and implications for nursing practice

Data regarding the prevalence of dementia and the prevalence of cancer suggest that a relatively large number of older people living with dementia may also have unsuspected comorbid cancer. Research into dementia and comorbid cancer is limited. The existing literature shows that people living with dementia have much lower cancer survival rates than people who do not have dementia, perhaps due to advanced age and cancer being diagnosed at a late stage or not at all. In people with dementia, investigating and managing cancer is complicated by cognitive impairment, atypical presentation, communication difficulties and potential behavioural issues – all of which may deter healthcare professionals from conducting patient assessments and screening tests. In this article, the authors use a case study to illustrate the challenges that can arise when a person living with dementia develops cancer, particularly in relation to diagnosis, pain assessment, decision-making and carer involvement.

Exploring the Efficacy of an Online Training Programme to Introduce Mental Health Recovery to Carers

Family carers often support people with mental ill-health, however, there is a dearth of research on the importance of recovery to mental health carers. This article describes the delivery and qualitative evaluation of an online training programme on recovery to a group of eleven carers. The participants considered their understanding of the meaning of recovery, differentiating between its personal and clinical nature. They highlighted the importance of carer involvement in the service users’ professional support, alongside the need for carers to participate more widely in service development. Finally, the participants found the training useful in enabling them to recognise their own needs in a caring journey, particularly valuing its delivery by a service user and carer trainer. This study is limited by the small number of participants in this programme; however, this series of connected studies suggests its potential to be rolled out more widely, possibly embedded in Recovery Colleges.

Patient and carer involvement in the formulation of research questions: findings from the Italian guideline on palliative care in adults with glioma.

In 2017, the European Association for Neuro-Oncology (EANO) published the guideline for palliative care (PC) in adults with glioma. The Italian Society of Neurology (SIN), the Italian Association for Neuro-Oncology (AINO), and the Italian Society for Palliative Care (SICP) joined forces to update and adapt this guideline to the Italian context and aimed to involve patients and carers in the formulation of the clinical questions. During semi-structured interviews with glioma patients and focus group meetings (FGMs) with family carers of deceased patients, participants rated the importance of a set of pre-specified intervention topics, shared their experience, and suggested additional topics. Interviews and FGMs were audio-recorded, transcribed, coded, and analyzed (framework and content analysis). We held 20 interviews and five FGMs (28 carers). Both parties considered the pre-specified topics as important, chiefly information/communication, psychological support, symptoms management, and rehabilitation. Patients aired the impact of focal neurological and cognitive deficits. Carers reported difficulties in dealing with patient's behavior and personality changes and appreciated the preservation of patient's functioning via rehabilitation. Both affirmed the importance of a dedicated healthcare path and patient's involvement in the decision-making process. Carers expressed the need to be educated and supported in their caregiving role. Interviews and FGMs were well informative and emotionally challenging. Both parties confirmed the importance of the pre-specified topics, and carers suggested one additional topic: education/support to caregivers. Our findings strengthen the importance of a comprehensive care approach and of addressing the needs of both patients and their family carers.

Service user and carer involvement in online interprofessional learning during the COVID-19 pandemic

Patients, service users and carers are now expected to contribute to teaching health and social care students in all professions. This follows policy directives driven by a review of failings in NHS standards for patient involvement in all aspects of health and social care. Patient and carer contributions to interprofessional education hold fast to values for patient/carer-centred care. This article discusses the context to service user and carer involvement in health professions education, drawing on current evidence and with considerations for midwifery students. A case study of a well-established carer's session is presented, drawing on the input of a mother, which was continued online during the pandemic. It was ensured that this important learning was not lost when teaching became remote, relying on technology-enhanced learning methods. These adaptations depend on long-standing patient partnerships between faculty in higher education institutions and patients/carers who must feel safe and trust the teaching context where they contribute to student learning. Effective learning can be maintained in online environments to ensure the patient voice remains central to health professions training.

The medication self-management work system of patients and informal carers from a human factors & ergonomics perspective: A scoping reviewprotocol.

Background: Healthcare is increasingly delivered closer to the patients' homes, which increases the level of responsibility that patients and informal carers take for managing their medication-taking, although this is associated with hazards. Medication self-management has been conceptualised as work taking place in non-formal settings ( e.g., households), which are complex systems. Human factors and ergonomics (HFE) models provide a framework for studying such systems. The Systems Engineering Initiative for Patient Safety (SEIPS) is one framework that considers work system elements and how they interact with each other to shape processes that lead to outcomes ( e.g., safety). Given the increasing amount of diverse research on patient and carer work and on system-shaping factors, the objectives of this review are to: (i) identify available evidence in a structured and systems-oriented way, (ii) explore approaches that have been applied and (iii) highlight research gaps. Methods: An evidence-informed patient, public and carer involvement (PPCI) approach will be implemented at all post-protocol stages to ensure the relevance, uptake and translation of the scoping review. The review will systematically search MEDLINE, Embase, PsycInfo, CINAHL and Web of Science to identify relevant qualitative studies. The methodological approach will be guided by Johanna Briggs Institute methodology and will be reported according to the PRISMA-ScR standards. Data charting and qualitative content analysis directed by SEIPS will explore how the work system and its constituting elements have been described in the literature and identify specific gaps and opportunities for future research. Borrowing from realist approaches, included studies will be assessed in terms of richness and relevance to our review question. Discussion: Strengths of this scoping review include PPCI and a converging focus on medication safety, medication self-management and HFE. Ultimately, this approach will advance our understanding of this complex system and guide opportunities to broaden and strengthen the evidence base.

Involving people with lived experience in physiotherapy education - Research report two: Harnessing the expertise of people with lived experience

This report is part of a series of case reports critically reflecting on the involvement of people with lived experience in a UK based physiotherapy degree programme. An initial scoping review of the literature found only two papers exploring the involvement of people with lived experience specifically in physiotherapy education. This is despite an education and training standard requiring service user and carer involvement in all approved programmes in England being in place since 2014. Our goal as a public involvement in education and research partnership, is to challenge this by showcasing a range of approaches and impacts for involving people with lived experience in physiotherapy education and to develop an empirical evidence base for this involvement so best practice can be shared and developed.

Understanding support systems for Parkinson's disease management in community settings: A cross-national qualitative study.

Health and social care systems face difficulties in managing multimorbidity, disease burden and complex needs in long-term conditions such as Parkinson's disease. This study aimed to develop a European understanding of how health and social care professionals can collaborate with stakeholders from different organizations and sectors to enhance the management of Parkinson's disease in a community setting by identifying the existing gaps in this process and how people with Parkinson's disease and their family carers could benefit from these partnerships. A mixed-methods sequential study was conducted in Denmark, Norway, Spain and the United Kingdom. The findings from the qualitative phase are presented. Individual semistructured interviews were analysed using Braun's and Clarke's thematic analysis. A meta-ethnography approach was used to analyse and synthesize cross-national findings. A total of 41 healthcare professionals and 39 stakeholders from different disciplines and sectors were interviewed in the four countries. The participants acknowledged a lack of awareness of available resources and poor communication between the different support systems in the management of Parkinson's disease. To promote multiagency collaborations, the participants highlighted the need to organize services along the Parkinson's disease journey, patient involvement and strategic involvement of carers in organizing resources and Parkinson's disease care pathways. According to the participants, the benefits from multiagency partnerships could lead to an enhanced continuity of care and specialized knowledge, mobilization of resources in the community, personalized support and improved access to services. Policymakers are called upon to create formal structures that facilitate multisectoral collaborations to promote an integrated system of care for the management of Parkinson's disease in the community. To address this challenge, we propose five strategies showing how organizations can work together to optimize the use of resources and enhance the management of Parkinson's disease throughout the illness trajectory. Patient and Public Involvement groups made up of stakeholders, healthcare professionals, patients with Parkinson's disease and family carers participated in the design of the study, the development of the interview guides and the validation of the findings.

A scoping review to identify process and outcome measures used in acceptance and commitment therapy research, with adults with acquired neurological conditions

Background Acceptance and Commitment Therapy interventions are increasing in use in neurological populations. There is a lack of information on the measures available. Purpose To identify and classify the measures used in Acceptance and Commitment Therapy research studies with adults with acquired neurological conditions. Methods PRISMA-ScR guided scoping review. MEDLINE, PsycInfo and CINAHL databases searched (up to date 29/06/2022) with forward and backward searching. All study types included. Extraction of Acceptance and Commitment Therapy process-of-change and health-related outcome measures. Outcomes coded using the Core Outcome Measures in Effectiveness Trials (COMET) taxonomy. Results Three hundred and thirty three papers found on searching. Fifty four studies included and 136 measurement tools extracted. Conditions included multiple sclerosis, traumatic brain injury and stroke. Thirty-eight studies measured processes of change, with 32 measures extracted. The process measure most often used was the Acceptance and Action Questionnaire (n = 21 studies). One hundred and four health-related outcome measures extracted. Measures exploring quality of life, health status, anxiety and depression occurred most frequently, and were used in all included neurological conditions. COMET domains most frequently coded were emotional functioning/well-being (n = 50), physical functioning (n = 32), role functioning (n = 22) and psychiatric (n = 22). Conclusions This study provides a resource to support future identification of candidate measures. This could aid development of a Core Outcome Set to support both research and clinical practice. Further research to identify the most appropriate and relevant targets and tools for use in these populations should include expert consensus, patient, carer and public involvement and psychometric examination of measures.

A balance between putting on the researcher’s hat and being a fellow human being: a researcher perspective on informal carer involvement in health and social care research

BackgroundPublic involvement in health and social care research is increasingly prioritized by policy-makers and research funders. Often, the impact of the involvement is described in terms of how it has contributed to the research outcomes and how it has affected the involved members of the public. There is a dearth of studies reporting from the perspective of researchers themselves of having involved members of the public in their research. Nevertheless, there is a general expectation for researchers to accept and embrace public involvement in research. This study aims to explore researchers’ views of involving informal carers in health and social care research.MethodsEleven individual in-depth interviews with researchers in the fields of social work, caring science, health science and medical science constituted the dataset of this qualitative study, inspired by discourse psychology.ResultsThe qualitative data analysis resulted in two interpretative repertoires describing researchers’ views of involving informal carers in research, “Philosophy of Science” and “Personal relationships and growth”. Both repertoires need to be recognized; however, as of today, the Philosophy of Science repertoire is more acknowledged, while the second repertoire describing empathy, relationships and emotions may be viewed as the researcher being “unprofessional”. Further, the findings highlighted the dual perspective of being a researcher and a carer as creating opportunities for growth on the part of the researcher, on both a professional and a personal level.ConclusionsResearchers and their research work would benefit from acknowledging, discussing and reporting both interpretative repertoires in their publications, as well as recognizing the benefit of dialectal positions, for example, having a dual perspective as both a researcher and an informal carer.

PCR173 Patient and Carer Involvement (PI) in Real World Data & Evidence Generation (RWDEG): Findings From Industry

PCR173 Patient and Carer Involvement (PI) in Real World Data & Evidence Generation (RWDEG): Findings From Industry

PCR289 Building a Practical Strategy and Framework for Diverse and Inclusive Involvement of Patients and Carers in Real World Data & Evidence Generation (RWDEG)

PCR289 Building a Practical Strategy and Framework for Diverse and Inclusive Involvement of Patients and Carers in Real World Data & Evidence Generation (RWDEG)

Exploration of a community pharmacy delivered mobile health intervention to support medication taking for patients with multiple long-term conditions

Abstract Introduction Up to half of people with long-term conditions (LTCs) do not take their medicines as prescribed. Mobile health interventions, such as text messaging, have been shown to have positive impact on medication adherence.1 However, interventions for patients with multiple LTCs are lacking, and there are limited examples of their delivery from community pharmacy settings. We have developed a new intervention which combines a pharmacist consultation and automated two-way text messaging to support medicines taking. This has been developed using peer-reviewed literature and focus groups with patients and healthcare professionals (GPs, pharmacists, nurses). The intervention is tailored to the individual using a questionnaire and delivers content for up to eight LTCs. Aim To explore the acceptability of our new intervention with patients. Methods The new intervention was delivered to patients in a simulated environment, including a consultation with a pharmacist and two weeks of text messaging. Diary-interviews were used to gather feedback from eight patients, recruited through a public, patient and carer involvement group based at a university. Patients kept a diary during the period of text messaging and follow-up semi-structured interviews were conducted. Interviews were audio recorded and transcribed verbatim for analysis. Transcripts were coded for aspects of the intervention that the patients liked and ideas on how the intervention could be changed, including the impact of delivering the intervention from community pharmacies. Ethical approval for this study was granted by the University of Sunderland Research Ethics Committee. Results The intervention had good acceptability with patients. Patients were happy to interact with the text messaging content, including providing information about symptoms of their long-term condition and result of home monitoring. Patients liked that the intervention was linked to a pharmacist consultation, where there were opportunities to identify medication issues which text messaging could not solve. Delivering the intervention from a community pharmacy setting was felt to promote stronger engagement with the text messaging component, including the opportunity to build rapport with the pharmacist who would be overseeing the intervention. The mechanism to monitor medication adherence using two-way text messaging was suggested to be made more streamlined, and patients also wanted more examples of text message responses included in the patient information leaflet for the intervention. Discussion/Conclusion We found that our intervention to support medication taking from community pharmacies has initial acceptability with patients. Whilst others have trialled similar technologies from community pharmacies2 our intervention focussed solely on medication taking, and this seemed to result in positive attitudes towards its delivery from community pharmacies. The consultation was found to be an important component alongside the text messaging, how combining digital and non-digital components work together to support medication adherence was a gap highlighted in our previous review of similar interventions.3 Our intervention now requires changes based on the feedback gathered in this study and further testing in a larger and more diverse group.