Explore Service Users Research Articles

Service Users' Experiences of a Nationwide Digital Type 2 Diabetes Self-Management Intervention (Healthy Living): Qualitative Interview Study.

Diabetes Self-Management Education and Support programs for people living with type 2 diabetes mellitus (T2DM) can increase glycemic control and reduce the risk of developing T2DM-related complications. However, the recorded uptake of these programs is low. Digital self-management interventions have the potential to overcome barriers associated with attendance at face-to-face sessions. Healthy Living is an evidence-based digital self-management intervention for people living with T2DM, based on the Healthy Living for People with Type 2 Diabetes (HeLP-Diabetes) intervention, which demonstrated effectiveness in a randomized controlled trial. NHS England has commissioned Healthy Living for national rollout into routine care. Healthy Living consists of web-based structured education and Tools components to help service users self-manage their condition, including setting goals. However, key changes were implemented during the national rollout that contrasted with the trial, including a lack of facilitated access from a health care professional and the omission of a moderated online support forum. This qualitative study aims to explore service users' experiences of using Healthy Living early in the national rollout. A total of 19 participants were interviewed via telephone or a videoconferencing platform. Topics included users' experiences and views of website components, their understanding of the intervention content, and the overall acceptability of Healthy Living. Transcripts were analyzed thematically using a framework approach. Participants valued having trustworthy information that was easily accessible. The emotional management content resonated with the participants, prompting some to book an appointment with their general practitioners to discuss low mood. After completing the structured education, participants might have been encouraged to continue using the website if there was more interactivity (1) between the website and other resources and devices they were using for self-management, (2) with health professionals and services, and (3) with other people living with T2DM. There was consensus that the website was particularly useful for people who had been newly diagnosed with T2DM. Digital Diabetes Self-Management Education and Support programs offering emotional aspects of self-management are addressing an unmet need. Primary care practices could consider offering Healthy Living to people as soon as they are diagnosed with T2DM. Participants suggested ways in which Healthy Living could increase interaction with the website to promote continued long-term use.

Exploring service users’ and staff’s perspectives of outdoor clinical sessions

Exploring service users’ and staff’s perspectives of outdoor clinical sessions

Provision of E-Cigarettes for Smoking Cessation in Pregnancy: Perceptions and Experiences of Pregnant Women from Two UK Sites.

Smoking in pregnancy is associated with negative health outcomes for both mothers and babies; e-cigarettes, which contain nicotine without hazardous tobacco, may offer an additional smoking cessation strategy for pregnant women. Although e-cigarettes are being increasingly offered within services, there is limited understanding about whether e-cigarettes can improve smoking cessation support for pregnant individuals. This study aimed to explore service users' experiences of using e-cigarettes as a tool for smoking cessation during pregnancy. Semi-structured interviews were conducted with 14 women who had accepted one of two pilots and were analysed using inductive reflexive thematic analysis. The findings from each site were integrated to develop qualitative insight. Participants largely had positive perceptions of the free and easy-to-use e-cigarette, preferring it to nicotine replacement therapies. The desire to have a healthy pregnancy and baby and the inclusion of non-judgemental behavioural support facilitated motivation to quit. Many participants reduced or quit tobacco use, with positive social and health implications reported. However, numerous barriers to quitting were present and intentions about long-term quitting of combustible cigarettes and e-cigarettes were mixed and uncertain. Providing e-cigarettes within smoking cessation services was indicated to be a positive and effective strategy for pregnant women trying to quit tobacco. However, numerous barriers to quitting and staying quit remained, suggesting scope for further improvements to smoking cessation support for pregnant women.

Eliciting perspectives on remote healthcare delivery from service users with psychosis in the community: a cross-sectional survey study.

The transition towards remote healthcare has been rapidly accelerated in recent years due to a number of factors, including the COVID-19 pandemic, however, few studies have explored service users' views of remote mental healthcare, particularly in community mental health settings. As part of a larger study concerned with the development of a remotely delivered psychosocial intervention, a survey was conducted with service users with psychosis (N = 200) from six NHS trusts across England to gain cross-sectional data about service users' opinions and attitudes towards remote interventions and explore how digital access varies across different demographic groups and geographical localities. The majority of service users had access to technological devices and a quiet space to receive care. Age was a key factor in motivation to engage with remote care as older participants had less access to technological devices and the internet, and reported less confidence to learn how to use new technologies compared to younger participants. Differences in access and attitudes towards remote care were found across the different geographical localities. Over half of the participants (53.1%) preferred a hybrid model (i.e., mixture of face-to-face and remotely delivered treatment), with only 4.5% preferring remote treatment exclusively. Factors that both encourage and deter service users from engaging with remote care were identified. The findings of this study provide important information about the environmental and clinical barriers that prevent, or limit, the uptake of remotely delivered care for people with psychotic disorders. Although service users often have the ability and capacity to receive remote care, providers need to be cognisant of factors which may exacerbate digital exclusion and negatively impact the therapeutic alliance.

Exploring service users’ experience of transition from inpatient rehabilitation to community settings

Exploring service users’ experience of transition from inpatient rehabilitation to community settings

Experiences of current UK service provision for co-occurring parental domestic violence and abuse, mental ill-health, and substance misuse: A reflexive thematic analysis

Domestic violence and abuse (DVA), mental ill-health (MH), and substance misuse (SU) are inter-related public health problems negatively impacting families. Improved support requires an understanding of key stakeholders’ perspectives and experiences of current UK service provision. We conducted a qualitative research study to explore service users’, service providers’, and senior leadership/commissioners’ experiences of service provision for responding to parental DVA, MH, and SU in one locality. Six service users participated in individual, semi-structured interviews and ten service providers and senior leadership/commissioners attended two separate focus groups. We analysed data using reflexive thematic analysis. Five themes captured participants’ experiences: ‘it’s hard to get the support I need, when I need it’; ‘almost all services come together around a family’; ‘it’s all about the right relationships’; ‘addressing upstream drivers’; and ‘it’s difficult providing support for multiple needs’. These highlighted the importance of: early support; a relational response; and addressing needs beyond parental DVA, MH, and SU. They also emphasised the barriers presented by siloed specialisms and overwhelmed practitioners. Our study is one of the first to consider multiple stakeholders’ perspectives on current UK service provision for co-occurring parental DVA, MH, and SU. It highlights key challenges for working at the intersection of these problems and suggests system-level change is needed to create the conditions to support families with multiple needs.

“They talk to you like you're a person”: Validating McCormack and McCance’s Person-Centred Practice Framework through a qualitative study of older people’s experiences of person-centred integrated care (PCIC).

This paper concerns the findings of a qualitative study exploring service user experiences of PCIC. Using McCormack and McCance’s Person-Centred Practice (PCP) Framework, with a focus on the process and outcome domains at the micro level, the research validates the utility of the framework in an integrated care context. Drawing on a case study methodology, thirty interviews were conducted with service users engaging with integrated care services across three sites within the National Integrated Care Programme for Older Persons in the Republic of Ireland. 
 The PCP framework is an internationally recognised theoretical framework that supports healthcare service providers and teams in understanding the dimensions of person-centredness and how these can be represented and realised in practice (Slater, McCance and McCormack, 2017). The PCP framework centralises the establishment of the therapeutic relationship between the service provider and the service user, including their families and carers and identifies person-centred processes and consequent outcomes. 
 In particular, this paper will focus on this micro level component, i.e. the outcome and process domains, of the framework. The findings of the study validate the outcome and process domains as key in service user experiences of PCIC. While the three sites differ in terms of the integrated care model applied, findings indicate that the processes of engagement; having a sympathetic presence; providing holistic care; engaging in shared decision making; and working with patient’s beliefs and values are evident; are all both experienced and valued by service users. In addition, across the three cases, service users identify the impact of their care as manifesting all four person-centred outcomes included in the framework: satisfaction with care; involvement with care; and feeling of well-being; and creating a therapeutic culture between service user and care professional.
 The findings also indicate key components pertinent to service user experiences of PCIC which may be considered as possible extensions to the framework’s stated outcomes. These include consideration on the felt experience of integration and coordination in terms of outcomes for the service user. While the framework includes the felt experience of feeling treated as an individual and being involved in care in outcome domains, the felt experience of coordination and integration could also be included. Findings of the study elucidate the importance of the biographical narrative and reveal how diversity of individuals’ personal and social resources and capacities impact on the differentiated nature of agency and its expression as part of the care experience. This agency of the older person, whether relating to their educational, economic or other capacities or their social network and ancillary informal social supports and care, will impact on how they engage with and participate in care processes and related care needs. Consideration of this key biographical information, in addition to individuals’ beliefs and values, will impact on how service providers can optimise supports provided and will inform processes around participation and shared decision making. The findings reveal how this framework can be successfully used and potentially extended as a meaningful evaluative tool to explore experiences of PCIC.

Service User Experience of Receiving Remote Inpatient Mental Health Treatment via the Homecare Service

The Homecare Service was developed as a response to the COVID-19 pandemic, providing all the elements of a mental health inpatient programme remotely, in the comfort and safety of the service user’s home thus reducing the need for a physical admission. The aim of this study was to explore service user experiences of a remote virtual inpatient care at an Irish independent mental health service. All participants who had a virtual admission in a 3-month period were invited to complete a series of questions via an online survey. Three open-ended questions generated qualitative data from this mixed methods study, which were thematically analysed. Three themes reflected service user experience: ‘The Homecare Service: a viable alternative to inpatient care’; ‘Importance of relationships’ and ‘Technology and Homecare.’ Overall, there was general satisfaction with the service. This study provided a good opportunity to identify issues that have emerged considering the prompt implementation of the initiative. Feedback relating to improvements can be implemented in future service delivery.

Exploring service users’ and practitioners’ priorities regarding outcomes of cognitive behavioural therapy for distressing voices: a thematic analysis

ABSTRACT Background The outcomes of Cognitive Behavioural Therapy for distressing voices and their measurement have mostly been determined by professionals, with little focus on the outcomes that matter to people who hear voices. The aim of this qualitative study was to explore views about the outcomes of Cognitive Behavioural Therapy for distressing voices from the perspectives of lived and professional experience. Methods Fifteen service users and fourteen practitioners were recruited from mental health services. Semi-structured interview schedules were used to guide individual interviews with service users and focus groups with practitioners. All interviews were audio recorded and transcribed verbatim. Thematic analysis was applied to generate themes. Results Four themes were identified: “I want what I can’t have”, “Feeling empowered”, “Understanding and managing my emotions”, and “Doing more of what I want to do”. Two themes contained sub-themes. Discussion Valued outcomes by service users and practitioners appeared to reflect changes in voice characteristics, improvements in self-confidence and self-respect, acceptance of voices, understanding and managing emotions and personal outcomes. Findings suggest discrepancies between service users’ and practitioners’ priorities in regard to changes in voice characteristics and understanding and managing negative emotions. Recommendations include a greater focus on managing emotions by practitioners.

Patients’ experiences with coercive mental health treatment in Flexible Assertive Community Treatment: a qualitative study

BackgroundFlexible Assertive Community Treatment (FACT) teams have been implemented in Norwegian health and social services over the last years, partly aiming to reduce coercive mental health treatment. We need knowledge about how service users experience coercion within the FACT context. The aim of this paper is to explore service user experiences of coercive mental health treatment in the context of FACT and other treatment contexts they have experienced. Are experiences of coercion different in FACT than in other treatment contexts? If this is the case, which elements of FACT lead to a different experience?MethodWithin a participatory approach, 24 qualitative interviews with service users in five different FACT teams were analyzed with thematic analysis.ResultsParticipants described negative experiences with formal and informal coercion. Three patterns of experiences with coercion in FACT were identified: FACT as clearly a change for the better, making the best of FACT, and finding that coercion is just as bad in FACT as it was before. Safety, improved quality of treatment, and increased participation were described as mechanisms that can prevent coercion.ConclusionResults from this study support the argument that coercion is at odds with human rights and therefore should be avoided as far as possible. Results suggest that elements of the FACT model may prevent the use of coercion by promoting safety, improved quality of treatment and increased participation.

Truly Listening to Accounts of Mental Health Act Assessments: Reflections on my Practice

Abstract This article draws upon the experience of the author whilst undertaking a qualitative research study exploring service user experiences of being assessed for detention to a mental health hospital. Doing research as a social work practitioner is a growing area and a common motivation is to improve practice. This article brings a different way of reporting research, which is embedded in the reflective tradition of social work. It explores practitioner research and insider/outsider perspectives. Through reflection, the author examines in depth two participants’ narratives, how this impacted her as a mental health social worker and the changes in her practice. These assessments are complex pieces of social work with involuntary service users in a pressured setting and are a challenging area for practitioners to improve service user experiences.

‘This is hardcore’: a qualitative study exploring service users’ experiences of Heroin-Assisted Treatment (HAT) in Middlesbrough, England

BackgroundHeroin-Assisted Treatment (HAT) is well evidenced internationally to improve health and social outcomes for people dependent on opioids who have not been helped by traditional treatment options. Despite this evidence base, England has been slow to implement HAT. The first service outside of a trial setting opened in 2019, providing twice-daily supervised injections of medical-grade heroin (diamorphine) to a select sample of high-risk heroin users in Middlesbrough. This paper explores their experiences, including the negotiation of the strict regularly controls required of a novel intervention in the UK context.MethodsWe conducted in-depth interviews with service providers and users of the Middlesbrough HAT service between September and November 2021. Data from each group were thematically analysed and reported separately. This paper details the experiences of the twelve heroin dependent men and women accessing HAT.ResultsParticipants’ accounts of HAT treatment evidenced a tension between the regulatory constraints and uncertainty of treatment provision, and the positive outcomes experienced through supportive service provision and an injectable treatment option. Limited confidence was held in treatment efficacy, longevity of funding, and personal capacity for treatment success. This was counteracted by a strong motivation to cease engagement with the illicit drug market. While attendance requirements placed restrictions on daily activities, participants also experienced benefits from strong, supportive bonds built with the service providers through their continued engagement.ConclusionsThe Middlesbrough HAT programme provided benefits to a high-risk population of opioid dependent people who were unable or disinclined to participate in conventional opioid substitution treatments. The findings in this paper highlight the potential for service modifications to further enhance engagement. The closure of this programme in 2022 prohibits this opportunity for the Middlesbrough community, but holds potential to inform advocacy and innovation for future HAT interventions in England.

Applying the cultural adaption framework to the Early Youth Engagement (EYE-2) approach to early intervention in psychosis.

Disengagement from Early Intervention in Psychosis (EIP) services is pronounced in individuals from racially minoritized or diverse ethnic backgrounds, lesbian, gay, bisexual, transgender, and queer or questioning individuals, and individuals from some religious or spiritual backgrounds. The Early Youth Engagement in first episode psychosis study (EYE-2) is a cluster randomized controlled trial that tests a new engagement intervention. The current study aimed to (i) explore perspectives of service users from diverse backgrounds in relation to spirituality, ethnicity, culture and sexuality on engagement and the EYE-2 approach and (ii) use an evidence-based adaptation framework to incorporate their needs and perspectives into the EYE-2 resources and training. This qualitative study used semi-structured interviews to explore service users' experiences and perspectives on EYE-2 approaches and resources. The study was conducted within EIP teams across three inner-city sites in England chosen to reflect diverse urban populations. Topic guides covered participant's identity, perceptions of EYE-2 resources, and experience of using mental health services. Transcribed interviews underwent thematic analysis. In this study, 21 service users aged 18 to 35 (M= 25.4; SD= 5.5) participated in semi-structured interviews. Seven key themes were identified across the four domains of the cultural adaptation framework: Differing cognitions and beliefs; multiple facets of culture; language as a barrier to engagement; stigma and discrimination; adaptations to EYE-2 resources; trust in therapeutic alliance; and individual differences in therapeutic preferences. The emergent themes highlighted a need to cater to various aspects of cultural diversity when developing EIP materials and services.

A Qualitative Evaluation of a Health Access Card for Refugees and Asylum Seekers in a City in Northern England.

Refugees and asylum seekers residing in the UK face multiple barriers to accessing healthcare. A Health Access Card information resource was launched in Newcastle upon Tyne in 2019 by Newcastle City Council, intended to guide refugees and asylum seekers living in the city, and the professional organisations that support them, to appropriate healthcare services provided locally. The aim of this qualitative evaluation was to explore service user and professional experiences of healthcare access and utilisation in Newcastle and perspectives on the Health Access Card. Eleven semi-structured interviews took place between February 2020 and March 2021. Participants provided diverse and compelling accounts of healthcare experiences and described cultural, financial and institutional barriers to care. Opportunities to improve healthcare access for these population groups included offering more bespoke support, additional language support, delivering training and education to healthcare professionals and reviewing the local support landscape to maximise the impact of collaboration and cross-sector working. Opportunities to improve the Health Access Card were also described, and these included providing translated versions and exploring the possibility of developing an accompanying digital resource.

Exploring service users experiences of remotely delivered CBT interventions in primary care during COVID-19: An interpretative phenomenological analysis.

Primary Care Mental Health Services (PMHCS) aim to provide accessible and effective psychological interventions. However, there is a scarcity of qualitative research focused on patients' experiences. Service users' experience can inform development of accessible, high-quality mental health services. Nine semi-structured interviews were analysed from Primary Care Mental Health users in Northern Scotland using Interpretative Phenomenological Analysis (IPA). Four superordinate themes were generated: Orientating to treatment, Intervention features, Change enablers, and Impact. The results identified both facilitators and barriers associated with access and psychological change; and narratives around CBT acceptability, outcomes and remote delivery. The role of GPs emerged as a key determinant of access to PMHCS. The therapeutic relationship contributed to person-centred care provision, idiosyncratic change processes and self-empowerment. A personal commitment to engage with homework was described as a crucial change enabler. Findings are discussed in relation to existing literature, practical implications and suggestions for future research.

‘Not a cure, but helpful’ – exploring the suitability of evidence-based psychological interventions to the needs of Black, Asian and Minority Ethnic (BAME) communities

Abstract Individuals from Black, Asian and Minority Ethnic (BAME) groups experience profound disparities in accessing mental healthcare, show poorer treatment outcomes, and high attrition rates when compared to their White British counterparts. Despite the national rollout of Improving Access to Psychological Therapies (IAPT) services, research exploring service users’ recovery narrative has been scarce. The aim of this study was to explore whether evidence-based psychological interventions are suitable to the needs of BAME communities. Semi-structured interviews were conducted with nine BAME service users who received evidence-based psychological treatment(s) from IAPT services. Reflexive thematic analysis (RTA) was used to analyse the data which included a six-phase process to produce a robust pattern-based analysis. Overall, three themes were generated. The first theme highlighted the importance of recognising cultural dissonance within therapy, which considered patient therapeutic expectations, therapeutic guilt, and conflicting cultural identities. The second theme identified the need for therapists to develop cultural competency. This included the importance of building therapeutic trust and exploration of patient culture within therapy. The final theme considered the road to recovery and highlighted challenges with therapeutic engagement and evaluations of therapeutic effectiveness. Overall, BAME service users felt that therapy was not a cure, but found it helpful. Clinical implications and future recommendations are discussed. Key learning aims (1) To briefly introduce cross-cultural theoretical models that may assist mental health professionals to think critically about whether Western notions of therapy are suited to the needs of ethnic minority communities. (2) To highlight cultural challenges that may impede therapeutic success for BAME communities. (3) For IAPT services and practitioners to consider cultural competency training needs that may enhance service user therapeutic experiences and outcomes. (4) To encourage IAPT services to enhance knowledge about psychotherapy and mental health by promoting culturally sensitive psychoeducation in ethnic minority communities.

The Assistive Technology Passport: A Resource for Enhancing Capabilities as a Result of Better Access to Assistive Technology

The value of Assistive Technology in enabling active and equal participation in political, social, economic, and cultural life of people with disabilities, people ageing, and people with chronic conditions is broadly accepted. However, most of the global population who need assistive technology (AT) lack access to it, hence the call for international efforts to improve access to AT. Drawing from the capability approach (CA) developed by Amartya Sen and Martha C. Nussbaum, we explore factors that may hinder or facilitate access to AT. We examine the idea of an AT Passport as an innovative user-centered approach for improving access to AT. We used Interpretative Phenomenological Analysis (IPA) to explore service users’ lived experiences of access to AT and their understanding of the AT Passport concept. We identified the core values of human diversity, equity, access to opportunity, and individual freedom to choose a life of significance to them. Access to AT is central to expanding these capabilities subject to conducive personal and social-contextual issues. The AT Passport could be developed as a capability-enhancing resource by facilitating access to AT, harnessing the diversity of people’s personal, social, and environmental factors to enrich peoples’ capability sets. Further research is required to identify core AT Passport functionalities, usability, and acceptability features.

Experiences and perceptions of coercive practices in mental health care among service users in Nigeria: a qualitative study

BackgroundPeople with mental health problems are more vulnerable to a broad range of coercive practices and human rights abuses. There is a global campaign to eliminate, or at the very least decrease, the use of coercion in mental health care. The use of coercion in psychiatric hospitals in developing countries is poorly documented. The primary aim of this study was to explore service users’ perceptions and experiences of coercion in psychiatric hospitals in Nigeria.MethodsFour focus group discussions were carried out among 30 service users on admission in two major psychiatric hospitals in Nigeria. The audio recordings were transcribed verbatim and then analyzed thematically with the aid of MAXQDA software.ResultsThe Focus group participants included 19 males and 11 females with a mean age of 34.67 ± 9.54. Schizophrenia was the most common diagnosis (40%, n = 12) and had a secondary school education (60%, n = 18). The focus group participants perceived coercion to be a necessary evil in severe cases but anti-therapeutic to their own recovery, an extension of stigma and a vicious cycle of abuse. The experience of involuntary admission revolved mainly around deception, maltreatment, and disdain. Participants in both study sites narrated experiences of being flogged for refusing medication. Mechanical restraint with chains was a common experience for reasons including refusing medications, to prevent absconding and in other cases, punitively. The use of chains was viewed by participants as dehumanizing and excruciatingly painful.ConclusionThe experiences of coercion by participants in this study confirm that human rights violations occur in large psychiatric hospitals and underscore the need for mental health services reform. The use of coercion in this context reflects agelong underinvestment in the mental health care system in the country and obsolete mental health legislation that does not protect the rights of people with mental health problems. The study findings highlight an urgent need to address issues of human rights violations in psychiatric hospitals in the country.

‘Commanded to be ill, accused of being well’ a lived-experience-led, qualitative investigation of service user perspectives on the impact of emotionally unstable personality disorder diagnosis on self-concept

Background Emotionally unstable personality disorder (EUPD) is a mental disorder impairing health and functioning and increasing suicide risk and it is a stigmatised condition among healthcare professionals. EUPD diagnosis may significantly affect self-concept, yet no previous investigation has explicitly examined this. Aims To explore service user perspectives on (a) the impact of EUPD diagnosis on self-concept and (b) mediators of positive and negative impacts. Methods Service user-led, qualitative semi-structured interviews with n = 10 participants with EUPD. Results Perceived impacts of diagnosis on self-concept were, broadly, negative. Factors mediating between positive and negative impacts included: exposure to online stigma and public understanding, the responses of relatives, friends, intimate partners and trusted communities, and the attitudes and behaviours of healthcare staff. There were indications that recent guideline and practice developments (guidelines recommending alternatives to inpatient admissions for people with EUPD and “recovery-focused” approaches to self-harm) may have worsened inpatient staff attitudes and led to more rejecting service user experiences. Conclusion Mitigating negative impacts of EUPD diagnosis on self-concept may require addressing hateful, online content related to EUPD; revisiting use of the personality disorder label; improving medical communication around diagnosis and improving practice and policy in the management of EUPD in inpatient settings.

User-Led Mental Health Service Evaluation: The Contribution of User-Focused Monitoring to Recovery-Oriented Quality Development

User-focused monitoring (UFM) is a method of user-led mental health service evaluation that focuses on strengthening user involvement and developing the quality of services. Despite an increased emphasis on user involvement and the recovery orientation of services, scientific knowledge remains limited regarding how such goals can be realised. In this study, our aim is to explore UFM with a specific focus on how recovery processes are examined through the method in order to discuss how UFM can be developed in order to support a recovery orientation in mental health service evaluation. We sampled 20 Swedish UFM reports for qualitative analysis, and we found that UFM is a promising method for integrating a personal recovery perspective in service evaluations. By being performed peer-to-peer, the method has the unique ability to gather experiential knowledge regarding the situation of service users. UFM especially contributes to exploring service users’ experiences related to social connectedness and user involvement in services. We also discuss how the method can be developed to further support a recovery orientation in UFM. This might be achieved by integrating a process-oriented approach in the evaluations and by including the user informants’ own goals and views on what constitutes meaningful support in UFM. Suggestions for future developments concern incorporating personal recovery perspectives in the training of user monitors and creating structures for aggregating the knowledge produced through UFM.