Consumer involvement in the tertiary-level education of mental health professionals: a systematic review

A systematic review of the published work on consumer involvement in the education of health professionals was undertaken using the PRISMA guidelines. Searches of the CINAHL, MEDLINE, and PsychINFO electronic databases returned 487 records, and 20 met the inclusion criteria. Further papers were obtained through scanning the reference lists of those articles included from the initial published work search (n = 9) and contacting researchers in the field (n = 1). Thirty papers (representing 28 studies) were included in this review. Findings from three studies indicate that consumer involvement in the education of mental health professionals is limited and variable across professions. Evaluations of consumer involvement in 16 courses suggest that students gain insight into consumers' perspectives of: (i) what life is like for people with mental illness; (ii) mental illness itself; (iii) the experiences of admission to, and treatment within, mental health services; and (iv) how these services could be improved. Some students and educators, however, raised numerous concerns about consumer involvement in education (e.g. whether consumers were pursuing their own agendas, whether consumers' views were representative). Evaluations of consumer involvement in education are limited in that their main focus is on the perceptions of students. The findings of this review suggest that public policy expectations regarding consumer involvement in mental health services appear to be slowly affecting the education of mental health professionals. Future research needs to focus on determining the effect of consumer involvement in education on the behaviours and attitudes of students in healthcare environments.

A randomized controlled trial to reduce falls in people with Parkinson's Disease

Background. Falls are common and disabling in people with Parkinson's disease (PD). There is a need to quantify the effects of movement rehabilitation on falls in PD. Objective. To evaluate 2 physical therapy interventions in reducing falls in PD. Methods. We randomized 210 people with PD to 3 groups: progressive resistance strength training coupled with falls prevention education, movement strategy training combined with falls prevention education, and life-skills information (control). All received 8 weeks of out-patient therapy once per week and a structured home program. The primary end point was the falls rate, recorded prospectively over a 12 month period, starting from the completion of the intervention. Secondary outcomes were walking speed, disability, and quality of life. Results. A total of 1547 falls were reported for the trial. The falls rate was higher in the control group compared with the groups that received strength training or strategy training. There were 193 falls for the progressive resistance strength training group, 441 for the movement strategy group and 913 for the control group. The strength training group had 84.9% fewer falls than controls (incidence rate ratio [IRR] = 0.151, 95% CI 0.071-0.322, P < .001). The movement strategy training group had 61.5% fewer falls than controls (IRR = 0.385, 95% CI 0.184-0.808, P = .012). Disability scores improved in the intervention groups following therapy while deteriorating in the control group. Conclusions. Rehabilitation combining falls prevention education with strength training or movement strategy training reduces the rate of falls in people with mild to moderately severe PD and is feasible.

Factors associated with service use for young adolescents with mental health problems: findings from an Australian longitudinal study

The objective of the study wasto identify factors associated with use of services for adolescent mental health problems in an Australian community-based sample. Logistic regression analysis was conducted on data collected from 636 parents and their adolescent child to identify individual and family variables predicting parent report of service use for mental health problems in the adolescent 12 months later. The services most reported by parents to have been accessed were schoolbased ones. Multivariate analysis found that the following were associated with service use 12 months later: the adolescent being female, parent report of peer problems and hyperactivity, single-parent household, the parent being Australian born, and prior service use by the adolescent. Parental overcontrol was associated with reducedlikelihood of service use at followup. No association was found between service use at follow-up and parent gender, socioeconomic status, number of siblings, parent psychopathology, family social connectedness, and prior service use by the parent. No association was also found for family environment factors, parental attachment, or for the adolescent’s emotional competence or use of social support. The results indicate that families provide a potential target for interventions aimed at increasing use of professional services for adolescent mental health problems.

Conceptualizing inclusive research with people with intellectual disability

The inclusion of people with intellectual disability in research is a common requirement of research funding. Little conceptual clarity is available to guide the conduct of inclusive research or judge its fidelity, there is minimal evidence of its impact, and questions remain about its feasibility and rigour.

Inclusion in political and public life: the experiences of people with intellectual disability on government disability advisory bodies in Australia

BACKGROUND: Civil and political participation lies at the core of citizenship. Increasingly, people with intellectual disability are members of disability advisory bodies. This study investigated the political orientations of advisory body members with intellectual disability, their participatory experiences, and the types of support they received. METHOD: The 9 people with intellectual disability who in 2005 were members of disability advisory bodies at a state, national, and Victorian local government level were interviewed, together with 12 other members or secretariat staff of these bodies. Observations were also conducted of advisory body meetings. RESULTS: The political perspective of members with intellectual disability varied, but all had a background in self-advocacy. They found the work hard but rewarding and encountered both practical and intangible obstacles to participation. Members received varying types of practical support, but a supportive collegial milieu was characteristic among members who felt most confident about their participation. CONCLUSIONS: The milieu, structures, and processes of advisory bodies must all be adjusted to accommodate people with intellectual disability if they are to participate meaningfully.

A systematic review of adherence to restricted diets in people with functional bowel disorders

Functional bowel disorders such as irritable bowel syndrome are commonly experienced within the population, and have an adverse impact on emotions, physical well-being, social activity, and occupational output. Adherence to a restricted diet can reduce symptoms, which in turn leads to increased quality of life and well-being. The aim of this review was to assess the extent to which predictors of dietary adherence have been considered in studies relating to functional bowel disorders and following a restricted diet. This was done firstly by examining such studies which contained a measure or indicator of adherence, and then by examining predictors of adherence within and between studies. A search of PsycINFO, Medline, CINAHL, Web of Science, and Cochrane databases was performed during July 2014, with the search criteria including relevant terms such as gastrointestinal disorder, irritable bowel syndrome, diet, and adherence. Of an initial 7927 papers, 39 were suitable for inclusion. Fourteen of the 39 studies included had a structured measure or indicator of dietary adherence, and the remaining 25 mentioned adherence without any structured levels of adherence. There was little investigation into the predictors of adherence, with symptom relief or induction being the primary goal of most of the studies. This review indicates that predictors of dietary adherence are rarely considered in research regarding functional bowel disorders. Further investigation is needed into the variables which contribute to rates of adherence to restricted diets, and more rigorous research is needed to characterise those individuals most likely to be non-adherent. Such research is necessary to ensure that people with these conditions can be provided with appropriate support and interventions.

Development of an instrument to measure self-efficacy in caregivers of people with advanced cancer

Objective : Informal caregivers of people with advanced cancer experience many negative impacts as a result of their role. There is a lack of suitable measures specifically designed to assess their experience. This study aimed to develop a new measure to assess self-efficacy in caregivers of people with advanced cancer.

Methods : The development and testing of the new measure consisted of four separate, sequential phases: generation of issues, development of issues into items, pilot testing and field testing. In the generation of issues, 17 caregivers were interviewed to generate data. These data were analysed to generate codes, which were then systematically developed into items to construct the instrument. The instrument was pilot tested with 14 health professionals and five caregivers. It was then administered to a large sample for field testing to establish the psychometric properties, with established measures including the Brief Cope and the Family Appraisals for Caregiving Questionnaire for Palliative Care.

Results : Ninety-four caregivers completed the questionnaire booklet to establish the factor structure, reliability and validity. The factor analysis resulted in a 21-item, four-factor instrument, with the subscales being termed Resilience, Self-Maintenance, Emotional Connectivity and Instrumental Caregiving. The test-retest reliability and internal consistency were both excellent, ranging from 0.73 to 0.85 and 0.81 to 0.94, respectively. Six convergent and divergent hypotheses were made, and five were supported.

Conclusions : This study has developed a new instrument to assess self-efficacy in caregivers of people with advanced cancer. The result is a four-factor, 21-item instrument with demonstrated reliability and validity.

A tailored, supportive care intervention using systematic assessment designed for people with inoperable lung cancer: a randomised controlled trial

Objective : People with inoperable lung cancer experience higher levels of distress, more unmet needs and symptoms than other cancer patients. There is an urgent need to test innovative approaches to improve psychosocial and symptom outcomes in this group. This study tested the hypothesis that a tailored, multidisciplinary supportive care programme based on systematic needs assessment would reduce perceived unmet needs and distress and improve quality of life.

Methods : A randomised controlled trial design was used. The tailored intervention comprised two sessions at treatment commencement and completion. Sessions included a self-completed needs assessment, active listening, self-care education and communication of unmet psychosocial and symptom needs to the multidisciplinary team for management and referral. Outcomes were assessed with the Needs Assessment for Advanced Lung Cancer Patients, Hospital Anxiety and Depression Scale, Distress Thermometer and European Organization of Research and Treatment of Cancer Quality of Life Q-C30 V2.0.

Results : One hundred and eight patients with a diagnosis of inoperable lung or pleural cancer (including mesothelioma) were recruited from a specialist facility before the trial closed prematurely (original target 200). None of the primary contrasts of interest were significant (all p > 0.10), although change score analysis indicated a relative benefit from the intervention for unmet symptom needs at 8 and 12 weeks post-assessment (effect size = 0.55 and 0.40, respectively).

Conclusion : Although a novel approach, the hypothesis that the intervention would benefit perceived unmet needs, psychological morbidity, distress and health-related quality of life was not supported overall.

Supporting informal caregivers of people with advanced cancer: a literature review

Informal carers are people who provide care without a specific professional role. They provide diverse caregiving supports including disease-related problems, side effects of treatment and psychosocial impacts. This paper reports on a comprehensive review of caregiving literature, focusing specifically on cancer caregivers. The paper presents five observations drawn from the literature in order to make recommendations about how caregivers of people with advanced cancer can best be supported. The observations are: 1) caregivers are a heterogeneous group; 2) they have unique needs that differ to the patient; 3) their role includes more than attending to physical caregiving tasks; 4) they may feel unable to take a break from the role and 5) they need their own support which may be beneficial to their capacity to continue in the caregiving role. Recommendations for how health professionals can assist in supporting caregivers in their role are discussed.

Unmet needs and distress in people with inoperable lung cancer at the commencement of treatment

Purpose : People with lung cancer report a higher burden of unmet needs, specifically psychological and daily living unmet needs. They experience more psychological distress and more physical hardship than other tumour sites. This study examined the levels of unmet need and psychological distress in inoperable lung cancer patients at the start of treatment.

Methods : A cross-section survey methodology was employed using baseline data from a randomised controlled trial designed to evaluate a supportive care intervention. Eligible lung cancer patients were approached to participate at the start of treatment. Consenting patients completed questionnaires prior to or just after the commencement of treatment. Reliable and valid measures included Needs Assessment for Advanced Lung Cancer Patients, Hospital Anxiety and Depression Scale and Brief Distress Thermometer.

Results : Of the 108 patients participating, the top unmet need was ‘Dealing with concerns about your family’s fears and worries’ (62%); with the next four also coming from the psychological/emotional domain, but, on average, most needs related to medical communication. Thirty two percent of patients reported clinical or subclinical anxiety and 19% reported HADS scores suggestive of clinical or subclinical depression. Moreover, 39.8% of the sample reported distress above the cut-off on the distress thermometer and this was associated with higher needs for each need subscale (p < 0.05).

Conclusions : People with lung cancer have high levels of unmet needs especially regarding psychological/emotional or medical communication. People with lung cancer who are classified as distressed have more unmet needs.

Role recognition and changes to self-identity in family caregivers of people with advanced cancer: a qualitative study

Purpose : Family caregivers of people with advanced cancer can provide extensive support to the patient. However, the role is not well defined and their experiences are poorly understood. This study aimed to explore how caregivers view their role and the impact of their caregiving.

Methods : A symbolic interactionist framework guided the in-depth individual interviews and grounded theory methodology was used to analyse the data. A total of 17 interviews were conducted: 13 with active caregivers and 4 with bereaved caregivers.

Results : Three dominant codes are presented. Caregivers lacked role recognition, as they struggled to recognise their role existed, even though they took on extensive and challenging tasks. Caregivers reported substantial loss or changes to their self-identity: with some caregivers reporting not being able to stop thinking about caregiving and others having difficulty answering questions about themselves. Caregivers also demonstrated difficulty in taking a break: active caregivers did not consider taking a break, whereas bereaved caregivers retrospectively admitted needing a break but reported an inability to take one.

Conclusions : Caregiving is complex and extensive. People who care for those with advanced cancer are in need of intervention to provide support and assistance to them in their role. However, this needs to be structured with consideration for how caregivers view their role.

The substantial personal burden experienced by younger people with hip or knee osteoarthritis

OBJECTIVE: To compare Health-Related Quality of Life (HRQoL) and psychological distress in younger people with hip or knee osteoarthritis (OA) to age- and sex-matched population norms, and evaluate work limitations in this group. METHOD: People aged 20-55 years with hip or knee OA were recruited from major hospitals (n = 126) and community advertisements (n = 21). HRQoL was assessed using the Assessment of Quality of Life (AQoL) instrument (minimal important difference 0.06 AQoL units) and compared to population norms. Psychological distress was assessed using the Kessler Psychological Distress Scale (K10) and the prevalence of high/very high distress (K10 score ≥22) was compared to Australian population data. Work limitations were evaluated using the Workplace Activity Limitations Scale (WALS). RESULTS: Considering most participants had a relatively recent OA diagnosis (<5 years), the extent of HRQoL impairment was unexpected. A very large reduction in HRQoL was evident for the overall sample, compared with population norms (mean difference -0.35 AQoL units, 95% CI -0.40 to -0.31). Females, people aged 40-49 years, and those with hip OA reported average HRQoL impairment of almost 40% (mean reductions -0.38 to -0.39 AQoL units). The overall prevalence of high/very high distress was 4 times higher than for the population (relative risk 4.19, 95% CI 3.53-4.98) and 67% reported moderate to considerable OA-related work disability, according to WALS scores. CONCLUSIONS: These results clearly demonstrate the substantial personal burden experienced by younger people with hip or knee OA, and support the provision of targeted services to improve HRQoL and maximise work participation in this group.