Ticking boxes or meaningful partnership - The experience of lay representation, participant and study partner involvement in Brains for Dementia Research.

Brains for Dementia Research is a planned brain donation project with serial assessments during life. Lay input helped conceive and shape Brains for Dementia Research and over time a growing number of lay volunteers have engaged with the project in almost all areas of activity. Lay representatives serve on the management and tissue banking committees, have spoken at recruitment and team events, and have reviewed all public and participant facing communications. Recruitment and retention has been greatly facilitated through lay involvement with community organisations and creating regional/national media opportunities. The experience of Brains for Dementia Research has been that involvement of the public and study participants has the greatest positive impact on study outcomes when the relationship is a genuine partnership. Purposeful inclusivity allows lay people to contribute in situations where professionals might otherwise dominate. Maintaining an environment where both lay and professional staff can think creatively, express ideas and opinions, problem-solve and work well together has had a synergistic effect on project outcomes. Ensuring good communication between the various professionals and lay representatives has also been part of the success in keeping the cohort flexible and able to respond to the changing landscape of clinical trials, the emergence of 'big data' and to maximise the future potential of the cohort. Our lay representatives may also be study participants, study partners, or have personal experience of dementia and bring an energy, enthusiasm and commitment to what they do, that in turn encourages the professional team.

Nurses' experience of delivering a supportive intervention for family members of patients with lung cancer.

Families contribute to maintaining the well-being of people with cancer through providing emotional and practical support, frequently at significant cost to their own well-being, and often with little help from healthcare professionals. This paper describes nurses' experience of providing an innovative service to support the families of people with lung cancer. A process of group reflection by the three nurses involved in delivering the intervention has produced an autoethnographic account of taking part in this study. Three main themes relating to the nature and process of delivering the intervention were identified: 'meeting diverse need', 'differing models of delivery' and 'dilemma and emotion'. Supporting family members of patients with lung cancer can be immensely rewarding for nurses and potentially bring significant benefit. However, this kind of work can also be demanding in terms of time and emotional cost. These findings demonstrate the value of incorporating process evaluation in feasibility studies for articulating, refining and developing complex interventions. Determining the applicability and utility of the intervention for other practice settings requires further evaluation.

'Hands of Time': the experience of establishing a support group for people affected by mesothelioma.

Expertise and management of mesothelioma are known to vary throughout the UK. The support needs of people with mesothelioma and their family members are poorly understood and poorly met. Support group participation can contribute to the supportive care of people with cancer and their family members by improving adaptation and reinforcing effective coping strategies. This paper describes the initial experience of establishing a support group for people affected by mesothelioma. The structure and process of developing and running the group are described and the challenges involved are discussed. The findings of a small evaluation of the group are presented.

Men, masculinity and "gender in development".

PIP: Articles and training materials on gender issues always talk about women. This focus is logical given the main goal of fostering the involvement of women as equal partners in the development process. The problems faced by men are rarely considered. Moreover, gender training, one of the core strategies of gender and development practice, rarely addresses men's experiences as men. By ignoring the complexities of the male experience, characterizing men as the problem, and continuing to focus upon women as the oppressed, development initiatives attempting to be gender-aware can fail to effectively address the issues of equity and empowerment. The author focuses upon the implications of recent work in feminist theory and questions of masculinity, stressing the need to consider the complex and variable nature of gender identities, and to work with men in exploring the constraints of dominant models of masculinity.^ieng

Childhood sexual victimization as a factor in the treatment of substance misusing adolescents.

The impact of childhood sexual abuse on the treatment for substance misuse of 194 adolescents was examined. At treatment onset, adolescents reporting sexual abuse, when compared to those reporting no sexual abuse, demonstrated more serious involvement with substances, a greater incidence of physical abuse and parental substance misuse, and, among males, increased suicidal ideation and school failure. The two groups did not differ on rate of treatment completion nor on change scores obtained from an assessment battery administered at the beginning and end of treatment. There were no differences between the two groups on adolescent ratings of treatment effectiveness. Therapists, however, rated adolescents who reported sexual abuse as showing greater improvement in two areas. Implications for treatment are discussed.

What is participatory research?

Research strategies which emphasize participation are increasingly used in health research. Breaking the linear mould of conventional research, participatory research focuses on a process of sequential reflection and action, carried out with and by local people rather than on them. Local knowledge and perspectives are not only acknowledged but form the basis for research and planning. Many of the methods used in participatory research are drawn from mainstream disciplines and conventional research itself involves varying degrees of participation. The key difference between participatory and conventional methodologies lies in the location of power in the research process. We review some of the participatory methodologies which are currently being popularized in health research, focusing on the issue of control over the research process. Participatory research raises personal, professional and political challenges which go beyond the bounds of the production of information. Problematizing "participation', we explore the challenges and dilemmas of participatory practice.

The relationship between phonological awareness and reading and spelling achievement eleven years later.

This study reports follow-up data from 24 teenagers (mean age = 17 years; 11 boys and 13 girls) who had participated in a study of phonological analysis and reading and spelling abilities 11 years earlier, when they were enrolled in kindergarten. The results indicated that phonological awareness ability assessed during kindergarten (via the Auditory Analysis Test) was a significant predictor of word identification and spelling skills 11 years later, when both socioeconomic status and vocabulary development were controlled. In contrast, socioeconomic status, vocabulary development, word recognition, and spelling achievement assessed at kindergarten were not significantly correlated with reading and spelling achievement 11 years later. Results are discussed regarding the relative stability of phonological awareness and the importance of this awareness as a precursor to the development of word identification and spelling skills.

Pretreatment variables that predict completion of an adolescent substance abuse treatment program.

The present study was designed to determine the utility of pretreatment data in predicting completion and dropout from adolescent substance abuse treatment. One hundred thirty-two consecutively admitted adolescents (mean age = 16.4 years; 93 male subjects, 39 female subjects) with significant substance abuse were administered a battery of standardized substance abuse, psychopathology, and social questionnaires immediately after admission to an intensive, set-length substance abuse treatment program. Seventy-four adolescents completed the program. Using discriminant function analyses, five pretreatment measures were found to predict treatment completion in male subjects, including: greater severity of problems with alcohol; greater use of drugs other than alcohol, cannabis, and tobacco; higher degree of internalizing problems; and lower self-esteem. Significant predictors for completion by female subjects were not found. The role of treatment readiness and motivation for male subjects is examined, and the lack of significant findings for female subjects is discussed.

The relationship of phonological awareness, rapid naming, and verbal memory to severe reading and spelling disability.

The present study examined the relationship of phonological awareness, naming speed, and verbal memory to the scores obtained from five tests assessing word attack, word identification, reading comprehension, and spelling skills in 54 children with severe reading disabilities (48 boys and 6 girls; M age = 9 years, 7 months). Multiple regression analyses indicated that the best predictor of achievement across the five academic tests was the Verbal Comprehension factor from the Wechsler Intelligence Scale for Children-Revised. Age, socioeconomic status (SES), and externalizing behavior problems were also significant predictors of achievement, depending on the academic measure. After controlling for age, SES, behavior problems, and intelligence, the phonological awareness task added significantly to the prediction of word attack, spelling, and reading comprehension scores; rapid letter naming added significantly to the prediction of word identification and prose passage speed and accuracy scores; and a word-list memory task added significantly to the prediction of word recognition scores. These results suggest that several independent processes interact to determine the extent and severity of reading problems.

Reading disabilities and aggression: a critical review.

Several authors have suggested that there is a strong association between specific learning disabilities and aggression, antisocial behavior, and juvenile delinquency. Claims that learning disabilities cause aggressive behavior and delinquency are increasingly common in the popular press, and a variety of theories concerning this purported causal relationship have been proposed. This research is flawed by a lack of specificity in the definition of learning disabilities, with studies often examining heterogeneous groups of children with learning problems. The present review examines the relationship between specific reading disabilities (the most frequently diagnosed learning disability) and aggressive behavior. The data suggest that there is not enough evidence to conclude that reading disability causes aggressive or delinquent behavior, although limited evidence does suggest that reading disability may worsen preexisting aggressive behavior.

Social validation of psychoeducational assessment reports.

The present study obtained written feedback concerning psychoeducational reports about youngsters referred to a pediatric hospital for known or suspected learning difficulties. A total of 269 questionnaires, with reference to 80 reports, were sent to parents and professionals. The results indicated that the reports were rated favorably in terms of understandability, explanatory value, and usefulness. There was a trend for parents and physicians to rate the report as less understandable than did school professionals. Parents rated the recommendations as more useful and reported implementing more of the recommendations than did teachers. These results are discussed with reference to service delivery.