Evaluating user involvement in primary healthcare

Current health policies, both in the UK and internationally, call for a shift from secondary to primary healthcare, and for increased involvement of service users and communities in decisions about their own care and about the way in which health services are provided. This study investigated the way in which users were involved in two London-based primary healthcare projects. Two projects were selected from a broader sample. A case study approach was adopted and a range of methods used to identify the types of user involvement, users' views of the process and, in one case study, users' preferences for participation. Arnstein's conceptual framework for participation was used in the analysis. In this paper, the findings of the study are discussed in relation to Cohen's notions of breadth, depth and range of participation. The paper illustrates how these notions may provide a mechanism for providers and commissioners of health services to assess their strategies in relation to user or community involvement, and the degree of success they achieve in implementation.

Research indepedence matters for practitioners and researchers in the addictions

As governments, industry bodies, and other interest groups become more adept at influencing the conduct and dissemination of research, it is increasingly important that the alcohol and other drug (AOD) sector maintains and protects the integrity of its evidence base. This commentary discusses the level and type of influence being exerted on the research process by different interest groups within the field. It explores the impact and influence of funding bodies, other interest groups, and social systems on addiction and recovery using relevant examples to identify questions for practitioners and researchers to consider when encountering interested parties in their day-to-day practice. Ultimately, it is service users and clinicians at the "front line" of recovery who have the most to lose from research findings that have been unduly influenced. The best protection against bias in these forms is to practice critical self-reflection and to keep openly and honestly debating those things that we find most challenging.

Human rights and forensic psychology

Objectives. Human rights serve to orientate practitioners to the necessary conditions for a minimally worthwhile life for service users, the prerequisites for a life of dignity and a chance at happiness, and the opportunity to incorporate into their life plans cherished values and goals. In this introduction to the special section paper, I discuss the basic concept of human rights and outline their relevance for clinical practice with offenders.

Method. I explore the core values associated with human rights and suggest that one of their primary functions is to protect the internal and external conditions of individuals' agency and their pursuit of better lives.

Conclusion. I briefly outline the three articles comprising this special section of LCP on human rights that address issues of risk, therapeutic jurisprudence, and the rights of detained persons.

Is psychotherapy a vector for isolation and anomie?

A key traditional question the client learns in the conventional psychotherapies is ‘Am I getting what I want?’. But can this question incite a mindset that does not align with the ‘give and take’ essence of sustainable everyday relations? Is it possible that the psychotherapies—if these practices can be bundled together—might teach clients to become more self-centred and relationally illiterate? MARK FURLONG suggests that well-intentioned practitioners can inadvertently de-empathise, ignore or even disrupt their clients’ intimate networks. Findings from his research support the proposition that the action of the mainstream therapies tends to undermine the service users’ prospects for sustainable personal relationships. Exceptions were found in the specialist settings of paediatric and aged care, and in narrative and family therapy practice.

Emphasizing 'the relational self' as a goal in casework

Traditional and radical authors agree that strengthening the autonomy of service users is a primary aim in casework. The current paper seeks to balance this emphasis on individual autonomy by arguing that the relational aspects of the self also require attention. This argument proceeds in three steps. Firstly, recent theoretical work will be introduced to advance the premise that the self can be understood as ‘relational’ as well as ‘autonomous’. Secondly, a summary is offered of the research which concludes that a strong social network, or in the more recently favoured terms, that ‘social connectedness’ and ‘attachment’, is protective of health and well-being. Building on these two ideas, it is then suggested that it may be important for caseworkers to promote the quality of interdependence and connectedness of those service users with whom we work, irrespective of the presenting problem and the practitioner’s preferred method and assigned practice role.

If a holistic approach to social work requires acknowledgement of religion, what does this mean for social work education?

There is growing recognition that promoting wellbeing requires a holistic approach to social work practice which includes understanding the role of religion in the lives of service users. This is reflected in a number of mentions of religion in the new code of ethics produced by the Australian Association of Social Workers. However, any consideration of whether religion has a place in social work should not only occur at the individual level, but also consider faith-based agencies. This paper considers the implications of this for social work education in respect of developing curriculum which acknowledges the religious dimension of the lives of many service users; skill development to enable social workers to broach issues of religion with service users; and working in or with faith-based agencies.

A systematic narrative review of consumer-directed care for older people: implications for model development

Consumer-directed care is increasingly becoming a mainstream option in community-based aged care. However, a systematic review describing how the current evaluation research translates into practise has not been published to date. This review aimed to systematically establish an evidence base of user preferences for and satisfaction with services associated with consumer-directed care programmes for older people. Twelve databases were searched, including MedLine, BioMed Central, Cinahl, Expanded Academic ASAP, PsychInfo, ProQuest, Age Line, Science Direct, Social Citation Index, Sociological Abstracts, Web of Science and the Cochrane Library. Google Scholar and Google were also searched. Eligible studies were those reporting on choice, user preferences and service satisfaction outcomes regarding a programme or model of home-based care in the United States or United Kingdom. This systematic narrative review retrieved literature published from January 1992 to August 2011. A total of 277 references were identified. Of these 17 met the selection criteria and were reviewed. Findings indicate that older people report varying preferences for consumer-directed care with some demonstrating limited interest. Clients and carers reported good service satisfaction. However, research comparing user preferences across countries or investigating how ecological factors shape user preferences has received limited attention. Policy-makers and practitioners need to carefully consider the diverse contexts, needs and preferences of older adults in adopting consumer-directed care approaches in community aged care. The review calls for the development of consumer-directed care programmes offering a broad range of options that allow for personalisation and greater control over services without necessarily transferring the responsibility for administrative responsibilities to service users. Review findings suggest that consumer-directed care approaches have the potential to empower older people.

Improving child protection services: Australian parents' and grandparents' perspectives on what needs to change

This exploratory, small-scale research aimed to understand parents’ and grandparents’ experiences and expectations of child protection investigations. Semi-structured, in-depth interviews were conducted with nine participants. The central theme, captured as ‘a domino effect’, crystallises the participants’ views of why it is important to improve child protection services; that there were significant practical relationship repercussions in families’ lives beyond the immediate investigation. The sub-themes that emerged – support within systemic complexity, policies in practice, intervention processes and practices, and ‘it’s just a job to them’ –suggested how child protection services contributed to ‘the domino effect’ in their lives. A final sub-theme indicated participants’ awareness of the complexity and difficulty of child protection as a job, notwithstanding their expressed frustrations. We have made practical recommendations based on participants’ perspectives about ‘what needs to change?’, and suggestions for improvements to practise that centralise social work as a profession which values the professional relationship with services users. We also suggest that the professional relationship should extend beyond the interpersonal to guiding services users within the legal complexities in contemporary child protection. Being exploratory, this study and its recommendations guide future research to contribute improving child protection services.

Retirement or just a change of pace: an Australian national survey of disability day services used by older people with disabilities

The increasing number of people with disabilities surviving to old age raises questions regarding the type of day support programs necessary to meet their needs. In this paper the results of a national survey of specialist disability day programs used by older2 people with a lifelong disability are discussed. A postal survey of 596 day programs for people with disabilities was conducted, with a response rate of 28%. Findings show that only 19% of service users were aged over 55, and the largest subgroup were people with intellectual disability. Many older people attended programs that were not age specific and a typology of the seven program types utilised was constructed. Individualised planning, flexibility and choice were perceived as fundamental to a successful program. The location of activities in the community, maintenance of social relationships, and opportunities to develop new contacts were also seen as important. Little understanding, however, of the diversity of the ageing process or notions of healthy ageing was demonstrated by service providers, many of whom had limited expectations of older people. Challenges identified in providing day support for older people were lack of financial resources, knowledge and expertise amongst staff, and difficulties interfacing with other service systems.

The study protocol of: 'initiating end of life care in stroke: clinical decision- making around prognosis'

 Background: The initiation of end of life care in an acute stroke context should be focused on those patients and families with greatest need. This requires clinicians to synthesise information on prognosis, patterns (trajectories) of dying and patient and family preferences. Within acute stroke, prognostic models are available to identify risks of dying, but variability in dying trajectories makes it difficult for clinicians to know when to commence palliative interventions. This study aims to investigate clinicians’ use of different types of evidence in decisions to initiate end of life care within trajectories typical of the acute stroke population.
Methods/design: This two-phase, mixed methods study comprises investigation of dying trajectories in acute stroke (Phase 1), and the use of clinical scenarios to investigate clinical decision-making in the initiation of palliative care (Phase 2). It will be conducted in four acute stroke services in North Wales and North West England. Patient and public involvement is integral to this research, with service users involved at each stage.
Discussion: This study will be the first to examine whether patterns of dying reported in other diagnostic groups are transferable to acute stroke care. The strengths and limitations of the study will be considered. This research will produce comprehensive understanding of the nature of clinical decision-making around end of life care in an acute stroke context, which in turn will inform the development of interventions to further build staff knowledge, skills and confidence in this challenging aspect of acute stroke care.

"Music therapy helped me get back doing": perspectives of music therapy participants in mental health services

BACKGROUND: Mental health service development internationally is increasingly informed by the collaborative ethos of recovery. Service user evaluation of experiences within music therapy programs allows new phenomena about participation in services to be revealed that might otherwise remain unnoticed. OBJECTIVE: The aim of this study was to demonstrate how asking service users about their experience of music therapy can generate useful information, and to reflect upon the feedback elicited from such processes in order to gain a deeper understanding of how music therapy is received among service users in mental health. METHODS: Six mental health service users described their experiences of music therapy in one or two individual interviews. Transcripts of interviews were analyzed using the procedures and techniques of Interpretative Phenomenological Analysis. RESULTS: Interviews with mental health service users provided rich, in-depth accounts reflecting the complex nature of music therapy participation. Super-ordinate themes refer to the context in which music therapy was offered, the rich sound world of music in music therapy, the humanity of music therapy, and the strengths enhancing opportunities experienced by service users. CONCLUSIONS: Participants indicated that they each experienced music therapy in unique ways. Opinions about the value of music therapy were revealed through an interview process in which the researcher holds an open attitude, welcoming all narrative contributions respectfully. These findings can remind practitioners of the importance of closely tuning into the perspectives and understandings of those who have valuable expertise to share about their experience of music therapy services in mental health.

Randomised controlled trial of a digitally assisted low intensity intervention to promote personal recovery in persisting psychosis: SMART-Therapy study protocol

BACKGROUND: Psychosocial interventions have an important role in promoting recovery in people with persisting psychotic disorders such as schizophrenia. Readily available, digital technology provides a means of developing therapeutic resources for use together by practitioners and mental health service users. As part of the Self-Management and Recovery Technology (SMART) research program, we have developed an online resource providing materials on illness self-management and personal recovery based on the Connectedness-Hope-Identity-Meaning-Empowerment (CHIME) framework. Content is communicated using videos featuring persons with lived experience of psychosis discussing how they have navigated issues in their own recovery. This was developed to be suitable for use on a tablet computer during sessions with a mental health worker to promote discussion about recovery.

METHODS/DESIGN: This is a rater-blinded randomised controlled trial comparing a low intensity recovery intervention of eight one-to-one face-to-face sessions with a mental health worker using the SMART website alongside routine care, versus an eight-session comparison condition, befriending. The recruitment target is 148 participants with a schizophrenia-related disorder or mood disorder with a history of psychosis, recruited from mental health services in Victoria, Australia. Following baseline assessment, participants are randomised to intervention, and complete follow up assessments at 3, 6 and 9 months post-baseline. The primary outcome is personal recovery measured using the Process of Recovery Questionnaire (QPR). Secondary outcomes include positive and negative symptoms assessed with the Positive and Negative Syndrome Scale, subjective experiences of psychosis, emotional symptoms, quality of life and resource use. Mechanisms of change via effects on self-stigma and self-efficacy will be examined.

DISCUSSION: This protocol describes a novel intervention which tests new therapeutic methods including in-session tablet computer use and video-based peer modelling. It also informs a possible low intensity intervention model potentially viable for delivery across the mental health workforce.

Can smartphone users turn off tracking service settings?

Tracking services play a fundamental role in the smartphone ecosystem. While their primary purpose is to provide a smartphone user with the ability to regulate the extent of sharing private information with external parties, these services can also be misused by advertisers in order to boost revenues. In this paper, we investigate tracking services on the Android and iOS smartphone platforms. We present a simple and effective way to monitor traffic generated by tracking services to and from the smartphone and external servers. To evaluate our work, we dynamically execute a set of Android and iOS applications, collected from their respective official markets. Our empirical results indicate that even if the user disables or limits tracking services on the smartphone, applications can by-pass those settings and, consequently, leak private information to external parties. On the other hand, when testing the location 'on' setting, we notice that generally location is not tracked.

Changes in Australian injecting drug users’ mental health problems and service uptake from 2006-2012

Purpose– The purpose of this paper is to assess changes in rates of mental health problems and service utilisation for Australian regular injecting drug users (IDUs) from 2006 to 2012. Design/methodology/approach – Data were taken from Illicit Drug Reporting System national surveys with 914 regular IDUs in 2006 and 883 in 2012. Changes in rates of self-reported mental health problems and service use were assessed. Findings – Rates of self-reported mental health problems increased from 38.3 per cent in 2006 to 43.7 per cent in 2012 – mainly due to increases in anxiety rates. Conversely, there was a decrease in mental health service use from 70.2 to 58.4 per cent by 2012. However, there was a proportional increase in the use of psychologists. These trends remained after controlling for socio-demographic and medical differences between the 2006/2012 samples. K10 scores for 2012 participants validated the use of the self-report measures. Practical implications – Reductions in stigma, improvements in mental health literacy, and modest increases in anxiety may explain increases in self-report of mental health problems. Stagnant service utilisation rates in an expanding population willing to self-report may explain decreasing service use. The introduction of key mental health reforms also may have contributed, particularly with the increase in psychologist access. This paper highlights the need for improved population monitoring of mental health in disadvantaged groups such as IDUs. Originality/value – This paper is the first to assess changes in mental health outcomes over time in Australian IDUs. This examination covered a critical era in the mental health landscape, with significant increases in public awareness campaigns and major mental health reforms.