Informing the development of services supporting self-care for severe, long term mental health conditions: a mixed method study of community based mental health initiatives in England.

BACKGROUND: Supporting self-care is being explored across health care systems internationally as an approach to improving care for long term conditions in the context of ageing populations and economic constraint. UK health policy advocates a range of approaches to supporting self-care, including the application of generic self-management type programmes across conditions. Within mental health, the scope of self-care remains poorly conceptualised and the existing evidence base for supporting self-care is correspondingly disparate. This paper aims to inform the development of support for self-care in mental health by considering how generic self-care policy guidance is implemented in the context of services supporting people with severe, long term mental health problems. METHODS: A mixed method study was undertaken comprising standardised psychosocial measures, questionnaires about health service use and qualitative interviews with 120 new referrals to three contrasting community based initiatives supporting self-care for severe, long term mental health problems, repeated nine months later. A framework approach was taken to qualitative analysis, an exploratory statistical analysis sought to identify possible associations between a range of independent variables and self-care outcomes, and a narrative synthesis brought these analyses together. RESULTS: Participants reported improvement in self-care outcomes (e.g. greater empowerment; less use of Accident and Emergency services). These changes were not associated with level of engagement with self-care support. Level of engagement was associated with positive collaboration with support staff. Qualitative data described the value of different models of supporting self-care and considered challenges. Synthesis of analyses suggested that timing support for self-care, giving service users control over when and how they accessed support, quality of service user-staff relationships and decision making around medication are important issues in supporting self-care in mental health. CONCLUSIONS: Service delivery components - e.g. peer support groups, personal planning - advocated in generic self-care policy have value when implemented in a mental health context. Support for self-care in mental health should focus on core, mental health specific qualities; issues of control, enabling staff-service user relationships and shared decision making. The broad empirical basis of our research indicates the wider relevance of our findings across mental health settings.

Patient and public involvement in the coproduction of knowledge: reflection on the analysis of qualitative data in a mental health study.

Patient and public involvement in health research is increasingly well established internationally, but the impacts of involvement on the research process are hard to evaluate. We describe a process of qualitative data analysis in a mental health research project with a high level of mental health service user and carer involvement, and reflect critically on how we produced our findings. Team members not from research backgrounds sometimes challenged academic conventions, leading to complex findings that would otherwise have been missing. An essential component of how we coproduced knowledge involved retaining methodological flexibility so that nonconventional research voices in the team could situate and critique what was conventionally known. Deliberate and transparent reflection on how "who we are" informed the knowledge we produced was integral to our inquiry. We conclude that reflecting on knowledge (co)production is a useful tool for evaluating the impact of patient and public involvement on health research.

Shifting the focus: sequential methods of analysis with qualitative data.

The purpose of this article is to illustrate both the processes of data analysis and the methodological development involved in adopting the sequential use of two data analysis methods applied to the same data set. Understanding of the phenomena of interest was sought through examining both the content and the form of nurses' accounts of practice experiences. Initially, a method of thematic content analysis was applied to understand what the nurses said about their experiences. The core theme of nurses' change agency derived from this analysis was examined further through a method of narrative analysis. In the second analysis, the focus was shifted to how the nurses accounted for their experiences. The innovative use of iterative, sequential methods of analysis revealed greater complexity and depth of understanding of the phenomena than would have been achieved with one method alone.

Identifying research priorities for digital technology in mental health care: results of the James Lind Alliance Priority Setting Partnership.

Digital technology, including the internet, smartphones, and wearables, provides the possibility to bridge the mental health treatment gap by offering flexible and tailored approaches to mental health care that are more accessible and potentially less stigmatising than those currently available. However, the evidence base for digital mental health interventions, including demonstration of clinical effectiveness and cost-effectiveness in real-world settings, remains inadequate. The James Lind Alliance Priority Setting Partnership for digital technology in mental health care was established to identify research priorities that reflect the perspectives and unmet needs of people with lived experience of mental health problems and use of mental health services, their carers, and health-care practitioners. 644 participants contributed 1369 separate questions, which were reduced by qualitative thematic analysis into six overarching themes. Following removal of out-of-scope questions and a comprehensive search of existing evidence, 134 questions were verified as uncertainties suitable for research. These questions were then ranked online and in workshops by 628 participants to produce a shortlist of 26. The top ten research priorities, which were identified by consensus at a stakeholder workshop, should inform research policy and funding in this field. Identified priorities primarily relate to the safety and efficacy of digital technology interventions in comparison with face-to-face interventions, evidence of population reach, mechanisms of therapeutic change, and the ways in which the effectiveness of digital interventions in combination with human support might be optimised.

Does Advanced Access improve access to primary health care? Questionnaire survey of patients.

BACKGROUND: General practices in England have been encouraged to introduce Advanced Access, but there is no robust evidence that this is associated with improved access in ways that matter to patients. AIM: To compare priorities and experiences of patients consulting in practices which do or do not operate Advanced Access. DESIGN OF STUDY: Patient questionnaire survey. SETTING: Forty-seven practices in 12 primary care trust areas of England. METHOD: Questionnaire administered when patients consulted. RESULTS: Of 12,825 eligible patients, 10,821 (84%) responded. Most (70%) were consulting about a problem they had had for at least 'a few weeks'. Patients obtained their current appointment sooner in Advanced Access practices, but were less likely to have been able to book in advance. They could usually see a doctor more quickly than those in control practices, but were no more satisfied overall with the appointment system. The top priority for patients was to be seen on a day of choice rather than to be seen quickly, but different patient groups had different priorities. Patients in Advanced Access practices were no more or less likely to obtain an appointment that matched their priorities than those in control practices. Patients in both types of practice experienced problems making contact by telephone. CONCLUSION: Patients are seen more quickly in Advanced Access practices, but speed of access is less important to patients than choice of appointment; this may be because most consultations are about long-standing problems. Appointment systems need to be flexible to accommodate the different needs of different patient groups.

Impact of Advanced Access on access, workload, and continuity: controlled before-and-after and simulated-patient study.

BACKGROUND: Case studies from the US suggest that Advanced Access appointment systems lead to shorter delays for appointments, reduced workload, and increased continuity of care. AIM: To determine whether implementation of Advanced Access in general practice is associated with the above benefits in the UK. DESIGN OF STUDY: Controlled before-and-after and simulated-patient study. SETTING: Twenty-four practices that had implemented Advanced Access and 24 that had not. METHOD: Anonymous telephone calls were made monthly to request an appointment. Numbers of appointments and patients consulting were calculated from practice records. Continuity was determined from anonymised patient records. RESULTS: The wait for an appointment with any doctor was slightly shorter at Advanced Access practices than control practices (mean 1.00 day and 1.87 days respectively, adjusted difference -0.75; 95% confidence interval [CI] = -1.51 to 0.004 days). Advanced Access practices met the NHS Plan 48-hour access target on 71% of occasions and control practices on 60% of occasions (adjusted odds ratio 1.61; 95% CI = 0.78 to 3.31; P = 0.200). The number of appointments offered, and patients seen, increased at both Advanced Access and control practices over the period studied, with no evidence of differences between them. There was no difference between Advanced Access and control practices in continuity of care (adjusted difference 0.003; 95% CI = -0.07 to 0.07). CONCLUSION: Advanced Access practices provided slightly shorter waits for an appointment compared with control practices, but performance against NHS access targets was considerably poorer than officially reported for both types of practice. Advanced Access practices did not have reduced workload or increased continuity of care.

Proportionate methods for evaluating a simple digital mental health tool.

BACKGROUND: Traditional evaluation methods are not keeping pace with rapid developments in mobile health. More flexible methodologies are needed to evaluate mHealth technologies, particularly simple, self-help tools. One approach is to combine a variety of methods and data to build a comprehensive picture of how a technology is used and its impact on users. OBJECTIVE: This paper aims to demonstrate how analytical data and user feedback can be triangulated to provide a proportionate and practical approach to the evaluation of a mental well-being smartphone app (In Hand). METHODS: A three-part process was used to collect data: (1) app analytics; (2) an online user survey and (3) interviews with users. FINDINGS: Analytics showed that >50% of user sessions counted as 'meaningful engagement'. User survey findings (n=108) revealed that In Hand was perceived to be helpful on several dimensions of mental well-being. Interviews (n=8) provided insight into how these self-reported positive effects were understood by users. CONCLUSIONS: This evaluation demonstrates how different methods can be combined to complete a real world, naturalistic evaluation of a self-help digital tool and provide insights into how and why an app is used and its impact on users' well-being. CLINICAL IMPLICATIONS: This triangulation approach to evaluation provides insight into how well-being apps are used and their perceived impact on users' mental well-being. This approach is useful for mental healthcare professionals and commissioners who wish to recommend simple digital tools to their patients and evaluate their uptake, use and benefits.

Direct to Public Peer Support and e-Therapy Program Versus Information to Aid Self-Management of Depression and Anxiety: Protocol for a Randomized Controlled Trial.

BACKGROUND: Regardless of geography or income, effective help for depression and anxiety only reaches a small proportion of those who might benefit from it. The scale of the problem suggests a role for effective, safe, anonymized public health-driven Web-based services such as Big White Wall (BWW), which offer immediate peer support at low cost. OBJECTIVE: Using Reach, Effectiveness, Adoption, Implementation and Maintenance (RE-AIM) methodology, the aim of this study was to determine the population reach, effectiveness, cost-effectiveness, and barriers and drivers to implementation of BWW compared with Web-based information compiled by UK's National Health Service (NHS, NHS Choices Moodzone) in people with probable mild to moderate depression and anxiety disorder. METHODS: A pragmatic, parallel-group, single-blind randomized controlled trial (RCT) is being conducted using a fully automated trial website in which eligible participants are randomized to receive either 6 months access to BWW or signposted to the NHS Moodzone site. The recruitment of 2200 people to the study will be facilitated by a public health engagement campaign involving general marketing and social media, primary care clinical champions, health care staff, large employers, and third sector groups. People will refer themselves to the study and will be eligible if they are older than 16 years, have probable mild to moderate depression or anxiety disorders, and have access to the Internet. RESULTS: The primary outcome will be the Warwick-Edinburgh Mental Well-Being Scale at 6 weeks. We will also explore the reach, maintenance, cost-effectiveness, and barriers and drivers to implementation and possible mechanisms of actions using a range of qualitative and quantitative methods. CONCLUSIONS: This will be the first fully digital trial of a direct to public online peer support program for common mental disorders. The potential advantages of adding this to current NHS mental health services and the challenges of designing a public health campaign and RCT of two digital interventions using a fully automated digital enrollment and data collection process are considered for people with depression and anxiety. TRIAL REGISTRATION: International Standard Randomized Controlled Trial Number (ISRCTN): 12673428; http://www.controlled-trials.com/ISRCTN12673428/12673428 (Archived by WebCite at http://www.webcitation.org/6uw6ZJk5a).

Experiences of service user and carer participation in health care education.

The agenda of involving service users and their carers more meaningfully in the development, delivery and evaluation of professional education in health is gaining in importance. The paper reports on a symposium which presented three diverse initiatives, established within a school of nursing and midwifery in the United Kingdom. These represent different approaches and attempts to engage service users and in some instances carers more fully in professional education aimed at developing mental health practitioners. Each is presented as achieving movement on a continuum of participation from service users as passive recipients to service users as collaborators and co-researchers. The paper concludes with a discussion of the lessons to be learnt which will hopefully stimulate service user involvement on a wider basis.

Developing mHealth Remote Monitoring Technology for Attention Deficit Hyperactivity Disorder: A Qualitative Study Eliciting User Priorities and Needs.

BACKGROUND: Guidelines in the United Kingdom recommend that medication titration for attention deficit hyperactivity disorder (ADHD) should be completed within 4-6 weeks and include regular reviews. However, most clinicians think that weekly clinic contact is infeasible, and audits have shown that this timeline is rarely achieved. Thus, a more effective monitoring and review system is needed; remote monitoring technology (RMT) may be one way to improve current practice. However, little is known about whether patients with ADHD, their families, and clinicians would be interested in using RMT. OBJECTIVE: To explore patients', parents', and health care professionals' views and attitudes toward using digital technology for remote monitoring during titration for ADHD. METHODS: This was a qualitative study, and data were collected through 11 focus groups with adults and young people with ADHD, parents of children with ADHD, and health care professionals (N=59). RESULTS: All participant groups were positive about using RMT in the treatment of ADHD, but they were also aware of barriers to its use, especially around access to technology and integrating RMT into clinical care. They identified that RMT had the most potential for use in the ongoing management and support of ADHD, rather than during the distinct titration period. Participants identified features of RMT that could improve the quality of consultations and support greater self-management. CONCLUSIONS: RMT has the potential to augment support and care for ADHD, but it needs to go beyond the titration period and offer more to patients and families than monitoring through outcome measures. Developing and evaluating an mHealth app that incorporates the key features identified by end users is required.

Self-care in mental health services: a narrative review.

Self-care is an important approach to the management of long-term health conditions and in preventing ill-health by living a healthy lifestyle. The concept has been used to a limited extent in relation to mental health, but it overlaps with the related concepts of recovery, self-management and self-help. These related concepts all entail individuals having more choice and control over treatment and a greater role in recovery and maintaining their health and well-being. This paper reviews qualitative empirical research that provides information on the nature of self-care in mental health from the perspective of people experiencing mental health problems. Twenty qualitative studies were identified from a systematic search of the literature. The methods used in these studies were critically appraised and key themes across studies identified self-care behaviours and processes supporting self-care. The paper also highlights challenges to this approach in mental health and provides a conceptual framework of the relationships between self-care support, self-care behaviours and strategies, and well-being for the individual. It also highlights limitations in the current evidence base and identifies areas for future research.

A socially inclusive approach to user participation in higher education.

AIM: This paper is a report of a study to evaluate the development of an innovative Service User Academic post in mental health nursing in relation to student learning and good employment practice in terms of social inclusion. BACKGROUND: Institutions providing professional mental health education are usually expected to demonstrate user involvement in the design, delivery and evaluation of their educational programmes to ensure that user voices are central to the development of clinical practice. Involvement can take many forms but not everyone values user knowledge as equal to other sources of knowledge. This can lead to users feeling exploited, rather than fully integrated in healthcare professional education processes. Development of the post discussed in this paper was stimulated and informed by an innovative example from Australia. METHOD: An observational case study of the development and practice of a Service User Academic post was undertaken in 2005. Participants were purposively sampled and included the User Academic, six members of a user and carer reference group, 10 educators and 35 students. Data were collected by group discussions and interviews. Data analysis was based on the framework approach. FINDINGS: The evaluation revealed tangible benefits for the students and the wider academic community. Most important was the powerful role model the Service User Academic provided for students. The post proved an effective method to promote service user participation and began to integrate service user perspectives within the educational process. However, the attempts to achieve socially inclusive practices were inhibited by organizational factors. The expectations of the role and unintended discriminatory behaviours had an impact on achieving full integration of the role. Furthermore, shortcomings in the support arrangements were revealed. CONCLUSIONS: The search for an optimum model of involvement may prove elusive, but the need to research and debate different strategies, to avoid tokenism and exploitation, remains.

Experiences of service user and carer participation in health care education.

The agenda of involving service users and their carers more meaningfully in the development, delivery and evaluation of professional education in health is gaining in importance. The paper reports on a symposium which presented three diverse initiatives, established within a school of nursing and midwifery in the United Kingdom. These represent different approaches and attempts to engage service users and in some instances carers more fully in professional education aimed at developing mental health practitioners. Each is presented as achieving movement on a continuum of participation from service users as passive recipients to service users as collaborators and co-researchers. The paper concludes with a discussion of the lessons to be learnt which will hopefully stimulate service user involvement on a wider basis.