Suzanne Hodge

Participation, discourse and power: a case study in service user involvement

Drawing on the findings from a case study of a forum in which users of mental health services are brought into dialogue with officials, the author demonstrates the value of an approach to user involvement in which discourse itself is used as a primary data source. Using her observations of the forum’s meetings, as well as interviews with forum members, the author shows how power is exercised discursively in various apparently trivial ways, ensuring that the forum’s discourse remains within established normative boundaries and serving, ultimately, to reinforce existing institutionally defined power relations.

Why is the potential of augmentative and alternative communication not being realized? Exploring the experiences of people who use communication aids

Augmentative and alternative communication (AAC) holds the potential to enable people with severe oral communication impairments to participate more fully in society. However, despite the development of increasingly sophisticated communication aids, as well as recent UK policy initiatives aimed at improving access to them, some major obstacles stand in the way of the inclusory potential of AAC being realized to any significant degree. Drawing on findings of a research study that explored the experiences of people who use AAC, this paper looks at the various problems that people encounter in using communication aids. It identifies the lack of consistent, structured support as a key overarching issue. The author goes on to argue that for the potential of AAC to be realized attention needs to be given to the development of coordinated systems of support within the policy domains of education, health and social services.

Reading between the lines: the experiences of taking part in a community reading project

Despite the popularity of reading groups, and the increased number of general-practitioner-referred bibliotherapy schemes in the UK, there has been relatively little research on the effects of reading works of literature on the well-being and health of readers. This paper reports the findings of a study set up to explore people’s experiences of taking part in community reading groups run by the Get into Reading Project in Wirral, Merseyside, UK. A qualitative approach was adopted, using three methods. These were participant observation with five reading groups, a key stakeholder interview and, with a sixth group, a single case study that consisted of observation and interviews with group members. The fieldwork conducted with the six groups took place in a variety of settings, including libraries, a residential drug rehabilitation unit and a hostel for homeless men. The research participants were all over 18 years of age, and all were members or facilitators of Get into Reading reading groups. The data were analysed thematically using NVivo qualitative analysis software. The findings show that the groups do not have a specific, targeted, therapeutic function, their primary purpose being more broadly literary, with literature itself trusted both to serve a coalescing social purpose and to offer non-specified but individual therapeutic benefits. Further work should be undertaken to explore the social and therapeutic benefits of reading literature in community settings.

Living with age-related macular degeneration treatment: Patient experiences of being treated with ranibizumab (Lucentis)(R) intravitreal injections

This study reports the results of a qualitative study of patient experiences of receiving treatment for wet age-related macular degeneration with ranibizumab (Lucentis)(R). Treatment involved monthly hospital visits for assessment and, where required, an intravitreal Lucentis injection. Qualitative narrative interviews were conducted with 22 patients, 18 of whom received treatment and were interviewed at two points during their treatment journey. Interviews allowed participants to reflect on their experiences of being assessed for and receiving this treatment. Overall, treated participants reported that while they had been apprehensive about treatment, the actual experience of it was far less unpleasant than they had expected. However, the data also revealed a number of issues surrounding the provision of information about treatment, as well as service delivery issues, which had considerable impact upon their experience.

User involvement in the construction of a mental health charter: an exercise in communicative rationality?

Background  This paper uses Jürgen Habermas’s Theory of Communicative Action as a lens through which to examine the development of a local mental health charter.

Exploring the role of an emotional support and counselling service for people with visual impairments

There is growing evidence of the need for services to address the emotional support needs of people with visual impairments. This article presents findings from a mixed methods evaluation of an emotional support and counselling (ESaC) service delivered within an integrated low vision service, focusing primarily on the qualitative findings. Data collected using a standardised measure of psychological well-being (Clinical Outcomes in Routine Evaluation–Outcome Measure; CORE-OM) show an improvement in the psychological well-being of clients of the service between baseline and follow-up assessment. Qualitative findings from interviews with service users and service providers help to illustrate and explain the experiences underlying the quantitative findings. The ESaC services are shown to be helpful to service users in two particular ways: helping them to normalise their experiences by talking to an impartial listener and helping them to accept and adapt to the physical, emotional and social changes in their lives resulting from their visual impairment.

Quantitative findings from a mixed methods evaluation of once-weekly therapeutic community day services for people with personality disorder

Background: Quantitative findings are presented from a mixed methods study of four one-day-a-week therapeutic communities for people with personality disorder (qualitative findings from the same study are reported in a separate paper). The evaluation assessed both the clinical efficacy of the model and its acceptability to service users, service employees and those who refer clients to the services. Aims: The study aimed to clarify whether one-day therapeutic communities can be effective for people with personality disorder. Method: Changes in the functioning of service users who attended the day services were assessed every 12 weeks for up to 1 year. Results: We found significant improvements in both the mental health and social functioning of service users. Changes in patterns of self-harm and service use were suggestive of possible underlying improvements but failed to reach significance levels. We also found evidence of the possible offset of costs within 16 months of an individual leaving one of the services. Conclusions: This study suggests one-day therapeutic communities may be both clinically- and cost-effective for people with personality disorder.

A qualitative study exploring the effects of attending a community pain service choir on wellbeing in people who experience chronic pain

In line with growing evidence of the health benefits of singing, this study aimed to explore participants’ perceptions of the impact of a service-user-led community pain choir on their psychological wellbeing, self-efficacy and relationships with their chronic pain. The choir has links to a multidisciplinary pain management service, which is informed by the ethos of solution-focused (SF) principles, specifically in identifying and drawing upon patients’ resources. Seven choir members participated in semi-structured interviews, grounded in lines of enquiry commonly used in SF practice. Thematic analysis of the data uncovered seven themes: Physical Improvements, Emotional Impact, Personal Growth, Interpersonal Processes, Relationship with the ‘Self’, Living Well with Pain and Sharing the Music and Spreading the Word. Participants’ narratives provided support for participation in the choir in enhancing positive affect, self-worth, interpersonal relationships and overall wellbeing. The choir enabled continued progress towards accomplishing key pain management programme aims: self-management, coping and living well with pain. Findings expanded upon existing evidence relating to singing and wellbeing by highlighting the choir’s role in promoting resilience and acceptance of pain. Clinical implications are explored in relation to psychosocial dimensions of pain.

Emotional support and counselling for people with visual impairment: Quantitative findings from a mixed methods pilot study

Aims: This paper reports on mainly quantitative findings from a mixed methods evaluation of a new model of emotional support and counselling for people with moderate visual impairment. Method: The CORE Outcome Measure was completed with service users at baseline and post-intervention to assess the impact of the new service on psychological wellbeing and social functioning. Their perceived needs and expectations of the service were also explored. Results: Of the 35 individuals providing data at each assessment time, mean item scores on the CORE fell significantly (p<.001), taking the sample from within a clinical population before therapy, to a mean score below this following therapy. A more positive outlook accompanied this improvement in functioning. Discussion: Findings from the study augment the growing evidence that emotional support and counselling services can play an important role alongside and within related vision services. Implications for practice: The study indicates that therapeutic input for the visually impaired client group may need to target both wellbeing (feelings about oneself and the future) and problems (depression, anxiety, physical health, and trauma). Conclusions: Our findings suggest that a dual model of emotional support and counselling offers considerable benefit for people with visual impairment.

Service user experiences of mentalisation-based treatment for borderline personality disorder

Purpose Previous research indicates that mentalisation-based treatment (MBT) is an effective therapeutic programme for difficulties associated with borderline personality disorder (BPD). The purpose of this paper is to explore service user experiences of the therapy. Design/methodology/approach Seven adults (five female and two male), recruited via three NHS trusts, were interviewed. Participants were attending intensive out-patient MBT for BPD between 3 and 14 months. Data were analysed using interpretative phenomenological analysis. Findings Participants experienced the group component of MBT as challenging and unpredictable. They highlighted developing trust as key to benefitting from MBT. This was much more difficult to achieve in group sessions than in individual therapy, particularly for those attending MBT for less than five or six months. The structure of MBT generally worked well for participants but they identified individual therapy as the core component in achieving change. All participants learned to view the world more positively due to MBT. Practical implications Enhanced mentalisation capacity may help address specific challenges associated with BPD, namely, impulsivity and interpersonal difficulties. MBT therapists are confronted with the ongoing task of creating a balance between sufficient safety and adequate challenge during MBT. Potential benefits and drawbacks of differing structural arrangements of MBT programmes within the UK are considered. Originality/value Learning about service user perspectives has facilitated an enhanced understanding of experiences of change during MBT in addition to specific factors that may impact mentalisation capacity throughout the programme. These factors, in addition to implications for MBT and suggestions for future research, are discussed.