The evidence-based development of an intervention to address the information needs of adults newly diagnosed with primary brain tumours and their carers

Adults diagnosed with primary brain tumours often experience physical, cognitive and neuropsychiatric impairments and decline in quality of life. Although disease and treatment-related information is commonly provided to cancer patients and carers, newly diagnosed brain tumour patients and their carers report unmet information needs. Few interventions have been designed or proven to address these information needs. Accordingly, a three-study research program, that incorporated both qualitative and quantitative research methods, was designed to: 1) identify and select an intervention to improve the provision of information, and meet the needs of patients with a brain tumour; 2) use an evidence-based approach to establish the content, language and format for the intervention; and 3) assess the acceptability of the intervention, and the feasibility of evaluation, with newly diagnosed brain tumour patients. Study 1: Structured concept mapping techniques were undertaken with 30 health professionals, who identified strategies or items for improving care, and rated each of 42 items for importance, feasibility, and the extent to which such care was provided. Participants also provided data to interpret the relationship between items, which were translated into ‘maps’ of relationships between information and other aspects of health care using multidimensional scaling and hierarchical cluster analysis. Results were discussed by participants in small groups and individual interviews to understand the ratings, and facilitators and barriers to implementation. A care coordinator was rated as the most important strategy by health professionals. Two items directly related to information provision were also seen as highly important: "information to enable the patient or carer to ask questions" and "for doctors to encourage patients to ask questions". Qualitative analyses revealed that information provision was individualised, depending on patients’ information needs and preferences, demographic variables and distress, the characteristics of health professionals who provide information, the relationship between the individual patient and health professional, and influenced by the fragmented nature of the health care system. Based on quantitative and qualitative findings, a brain tumour specific question prompt list (QPL) was chosen for development and feasibility testing. A QPL consists of a list of questions that patients and carers may want to ask their doctors. It is designed to encourage the asking of questions in the medical consultation, allowing patients to control the content, and amount of information provided by health professionals. Study 2: The initial structure and content of the brain tumour specific QPL developed was based upon thematic analyses of 1) patient materials for brain tumour patients, 2) QPLs designed for other patient populations, and 3) clinical practice guidelines for the psychosocial care of glioma patients. An iterative process of review and refinement of content was undertaken via telephone interviews with a convenience sample of 18 patients and/or carers. Successive drafts of QPLs were sent to patients and carers and changes made until no new topics or suggestions arose in four successive interviews (saturation). Once QPL content was established, readability analyses and redrafting were conducted to achieve a sixth-grade reading level. The draft QPL was also reviewed by eight health professionals, and shortened and modified based on their feedback. Professional design of the QPL was conducted and sent to patients and carers for further review. The final QPL contained questions in seven colour-coded sections: 1) diagnosis; 2) prognosis; 3) symptoms and problems; 4) treatment; 5) support; 6) after treatment finishes; and 7) the health professional team. Study 3: A feasibility study was conducted to determine the acceptability of the QPL and the appropriateness of methods, to inform a potential future randomised trial to evaluate its effectiveness. A pre-test post-test design was used with a nonrandomised control group. The control group was provided with ‘standard information’, the intervention group with ‘standard information’ plus the QPL. The primary outcome measure was acceptability of the QPL to participants. Twenty patients from four hospitals were recruited a median of 1 month (range 0-46 months) after diagnosis, and 17 completed baseline and follow-up interviews. Six participants would have preferred to receive the information booklet (standard information or QPL) at a different time, most commonly at diagnosis. Seven participants reported on the acceptability of the QPL: all said that the QPL was helpful, and that it contained questions that were useful to them; six said it made it easier to ask questions. Compared with control group participants’ ratings of ‘standard information’, QPL group participants’ views of the QPL were more positive; the QPL had been read more times, was less likely to be reported as ‘overwhelming’ to read, and was more likely to prompt participants to ask questions of their health professionals. The results from the three studies of this research program add to the body of literature on information provision for brain tumour patients. Together, these studies suggest that a QPL may be appropriate for the neuro-oncology setting and acceptable to patients. The QPL aims to assist patients to express their information needs, enabling health professionals to better provide the type and amount of information that patients need to prepare for treatment and the future. This may help health professionals meet the challenge of giving patients sufficient information, without providing ‘too much’ or ‘unnecessary’ information, or taking away hope. Future studies with rigorous designs are now needed to determine the effectiveness of the QPL.

The effectiveness of a short-term group music therapy intervention for young parents and their children

The quality of early life experiences are known to influence a child’s capacities for emotional, social, cognitive and physical competence throughout their life (Peterson, 1996; Zubrick et al., 2008). These early life experiences are directly affected by parenting and family environments. A lack of positive parenting has significant implications both for children, and the broader communities in which they live (Davies & Cummings, 1994; Dryfoos, 1990; Sanders, 1995). Young parents are known to be at risk of experiencing adverse circumstances that affect their ability to provide positive parenting to their children (Milan et al., 2004; Trad, 1995). There is a need to provide parenting support programs to young parents that offer opportunities for them to come together, support each other and learn ways to provide for their children’s developmental needs in a friendly, engaging and non-judgemental environment. This research project examines the effectiveness of a 10 week group music therapy program Sing & Grow as an early parenting intervention for 535 young parents. Sing & Grow is a national early parenting intervention program funded by the Australian Government and delivered by Playgroup Queensland. It is designed and delivered by Registered Music Therapists for families at risk of marginalisation with children aged from birth to three years. The aim of the program is to improve parenting skills and parent-child interactions, and increase social support networks through participation in a group that is strengths-based and structured in a way that lends itself to modelling, peer learning and facilitated learning. During the 10 weeks parents have opportunities to learn practical, hands-on ways to interact and play with their children that are conducive to positive parent-child relationships and ongoing child development. A range of interactive, nurturing, stimulating and developmental music activities provide the framework for parents to interact and play with their children. This research uses data collected through the Sing & Grow National Evaluation Study to examine outcomes for all participants aged 25 years and younger, who attended programs during the Sing & Grow pilot study and main study from mid-2005 to the end of 2007. The research examines the change from pre to post in self-reported parent behaviours, parent mental health and parent social support, and therapist observed parent-child interactions. A range of statistical analyses are used to address each Research Objective for the young parent population, and for subgroups within this population. Research Objective 1 explored the patterns of attendance in the Sing & Grow program for young parents, and for subgroups within this population. Results showed that levels of attendance were lower than expected and influenced by Indigenous status and source of family income. Patterns of attendance showed a decline over time and incomplete data rates were high which may indicate high dropout rates. Research Objective 2 explored perceived satisfaction, benefits and social support links made. Satisfaction levels with the program and staff were very high. Indigenous status was associated with lower levels of reported satisfaction with both the program and staff. Perceived benefits from participation in the program were very high. Employment status was associated with perceived benefits: parents who were not employed were more likely than employed parents to report that their understanding of child development had increased as a result of participation in the program. Social support connections were reported for participants with other professionals, services and parents. In particular, families were more likely to link up with playgroup staff and services. Those parents who attended six or more sessions were significantly more likely to attend a playgroup than those who attended five sessions or less. Social support connections were related to source of family income, level of education, Indigenous status and language background. Research Objective 3 investigated pre to post change on self-report parenting skills and parent mental health. Results indicated that participation in the Sing & Grow program was associated with improvements in parent mental health. No improvements were found for self-reported parenting skills. Research Objective 4 investigated pre to post change in therapist observation measures of parent-child interactions. Results indicated that participation in the Sing & Grow program was associated with large and significant improvements in parent sensitivity to, engagement with and acceptance of the child. There were significant interactions across time (pre to post) for the parent characteristics of Indigenous status, family income and level of education. Research Objective 5 explored the relationship between the number of sessions attended and extent of change on self-report outcomes and therapist observed outcomes, respectively. For each, an overall change score was devised to ascertain those parents who had made any positive changes over time. Results showed that there was no significant relationship between high attendance and positive change in either the self-report or therapist observed behavioural measures. A risk index was also constructed to test for a relationship between the risk status of the parent. Parents with the highest risk status were significantly more likely to attend six or more sessions than other parents, but risk status was not associated with any differences in parent reported outcomes or therapist observations. The results of this research study indicate that Sing & Grow is effective in improving outcomes for young parents’ mental health, parent-child interactions and social support connections. High attendance by families in the highest category for risk factors may indicate that the program is effective at engaging and retaining parents who are most at-risk and therefore traditionally hard to reach. Very high levels of satisfaction and perceived benefits support this. Further research is required to help confirm the promising evidence from the current study that a short term group music therapy program can support young parents and improve their parenting outcomes. In particular, this needs to address the more disappointing outcomes of the current research study to improve attendance and engagement of all young parents in the program and especially the needs of young Indigenous parents.

The development and evaluation of a culturally affirmative counselling model for deaf clients in Australia

In Australia, there is only one, newly established, dedicated mental health service catering specifically for the signing *Deaf community. It is staffed by four part-time hearing professionals and based in Brisbane. There are currently no Deaf psychologists or psychiatrists and there is no valid or reliable empirical evidence on outcomes for Deaf people accessing specialised or mainstream mental health services. Further compounding these issues, is the fact that there are no sign language versions of the most common standardised mental health or psychological instruments available to clinicians in Australia. Contemporary counselling literature is acknowledging the role of the therapeutic alliance and the impact of 'common factors' on therapeutic outcomes. However, these issues are complicated by the relationship between the Deaf client and the hearing therapist being a cross-cultural exchange. The disability model of deafness is contentious and few professionals in Australia have the requisite knowledge and understanding of deafness from a cultural perspective to attend to the therapeutic relationship with this in mind. Consequently, Deaf people are severely disadvantaged by the current lack of services, resources and skilled professionals in the field of deafness and psychology in this country. The primary aim of the following program of research has been to propose a model for culturally affirmative service delivery and to provide clinicians with tools to evaluate the effect of their therapeutic work with Deaf people seeking mental health treatment. The research document is presented as a thesis by publication and comprises four specific objectives formulated in response to the lack of existing services and resources. The first objective was to explore the use of social constructionist counselling techniques and a reflecting team with Deaf clients, hearing therapists and an interpreter. Following the establishment of a pilot counselling clinic, indepth semi-structured interviews were conducted with two long-term clients following the one year pilot of this service. These interviews generated recommendations for the development of a new 'enriched' model of counselling to be implemented and evaluated in later stages of the research program. The second objective was to identify appropriate psychometric measures that could be translated into Australian Sign Language (Auslan) for research into efficacy, effectiveness and counselling outcomes. Two instruments were identified as potentially suitable; the Outcome Rating Scale (ORS), a measure of global functioning, and the Session Rating Scale (SRS), a measure of therapeutic alliance. A specialised team of bi-lingual and bi-cultural interpreters, native signers and the primary researcher for this thesis, produced the ORS-Auslan and the SRS-Auslan in DVD format, using the translation and back-translation process. The third objective was to establish the validity and reliability of these new Auslan measures based on normative data from the Deaf community. Data from the ORS-Auslan was collected from one clinical and one non-clinical sample of Deaf people. Statistical analyses revealed that the ORS-Auslan is reliable, valid and adequately distinguishes between clinical and non-clinical presentations. Furthermore, construct validity has been established using a yet to be validated sign language version of the Depression, Anxiety and Stress Scale-21 items (DASS-21), providing a platform for further research using the DASS-21 with Deaf people. The fourth objective was to evaluate counselling outcomes following the implementation of an enriched counselling service, based on the findings generated by the first objective, and using the newly translated Auslan measures. A second university counselling clinic was established and implemented over the course of one year. Practice-based evidence guided the research and the ORS-Auslan and the SRS-Auslan were administered at every session and provided outcome data on Deaf clients' global functioning. Data from six clients over the course of ten months indicated that this culturally affirmative model was an effective approach for these six clients. This is the first time that outcome data have been collected in Australia using valid and reliable Auslan measures to establish preliminary evidence for the effectiveness of any therapeutic intervention for clinical work with adult, signing Deaf clients. The research generated by this thesis contributes theoretical knowledge, professional development and practical resources that can be used by a variety of mental health clinicians in the context of mental health service delivery to Deaf clients in Australia.

Methods used in cross-cultural comparisons of psychological symptoms and their determinants

This paper is the second in a series of reviews of cross-cultural studies of menopausal symptoms. The goal of this review is to compare and contrast methods which have been previously utilized in Cross-Cultural Midlife Women's Health Studies with a view to (1) identifying the challenges in measurement across cultures in psychological symptoms and (2) suggesting a set of unified questions and tools that can be used in future research in this area. This review also aims to examine the determinants of psychological symptoms and how those determinants were measured. The review included eight studies that explicitly compared symptoms in different countries or different ethnic groups in the same country and included: Australian/Japanese Midlife Women's Health Study (AJMWHS), Decisions At Menopause Study (DAMeS), Four Major Ethnic Groups (FMEG), Hilo Women's Health Survey (HWHS), Penn Ovarian Aging Study (POAS), Study of Women's Health Across the Nation (SWAN), Women's Health in Midlife National Study (WHiMNS), and the Women's International Study of Health and Sexuality (WISHeS). This review concludes that mental morbidity does affect vasomotor symptom prevalence across cultures and therefore should be measured. Based on the review of these eight studies it is recommended that the following items be included when measuring psychological symptoms across cultures, feeling tense or nervous, sleeping difficulty, difficulty in concentrating, depressed and irritability along with the CES-D Scale, and the Perceived Stress Scale. The measurement of these symptoms will provide an evidence based approach when forming any future menopause symptom list and allow for comparisons across studies.

Motivational Interviewing (MINT) improves Continuous Positive Airway Pressure (CPAP) acceptance and adherence : a randomised controlled trial

Objective: Adherence to Continuous Positive Airway Pressure Therapy (CPAP) for Obstructive Sleep Apnoea (OSA) is poor. We assessed the effectiveness of a motivational interviewing intervention (MINT) in addition to best practice standard care to improve acceptance and adherence to CPAP therapy in people with a new diagnosis of OSA. Method: 106 Australian adults (69% male) with a new diagnosis of obstructive sleep apnoea and clinical recommendation for CPAP treatment were recruited from a tertiary sleep disorders centre. Participants were randomly assigned to receive either three sessions of a motivational interviewing intervention ‘MINT’ (n=53; mean age=55.4 years), or no intervention ‘Control’ (n=53; mean age=57.74). The primary outcome was the difference between the groups in objective CPAP adherence at 1 month, 2 months, 3 months and 12 months follow-up. Results: Fifty (94%) participants in the MINT group and 50 (94%) of participants in the control group met all inclusion and exclusion criteria and were included in the primary analysis. The hours of CPAP use per night in the MINT group at 3 months was 4.63 hours and 3.16 hours in the control group (p=0.005). This represents almost 50% better adherence in the MINT group relative to the control group. Patients in the MINT group were substantially more likely to accept CPAP treatment. Conclusions: MINT is a brief, manualized, effective intervention which improves CPAP acceptance and objective adherence rates as compared to standard care alone.

Adherence, adaptation and acceptance of elderly chronic heart failure patients to receiving healthcare via telephone-monitoring

Background: Although the potential to reduce hospitalisation and mortality in chronic heart failure (CHF) is well reported, the feasibility of receiving healthcare by structured telephone support or telemonitoring is not. Aims: To determine; adherence, adaptation and acceptability to a national nurse-coordinated telephone-monitoring CHF management strategy. The Chronic Heart Failure Assistance by Telephone Study (CHAT). Methods: Triangulation of descriptive statistics, feedback surveys and qualitative analysis of clinical notes. Cohort comprised of standard care plus intervention (SC + I) participants who completed the first year of the study. Results: 30 GPs (70% rural) randomised to SC + I recruited 79 eligible participants, of whom 60 (76%) completed the full 12 month follow-up period. During this time 3619 calls were made into the CHAT system (mean 45.81 SD ± 79.26, range 0-369), Overall there was an adherence to the study protocol of 65.8% (95% CI 0.54-0.75; p = 0.001) however, of the 60 participants who completed the 12 month follow-up period the adherence was significantly higher at 92.3% (95% CI 0.82-0.97, p ≤ 0.001). Only 3% of this elderly group (mean age 74.7 ±9.3 years) were unable to learn or competently use the technology. Participants rated CHAT with a total acceptability rate of 76.45%. Conclusion: This study shows that elderly CHF patients can adapt quickly, find telephone-monitoring an acceptable part of their healthcare routine, and are able to maintain good adherence for a least 12 months. © 2007.

Tracking employees' twists and turns : describing a mixed methods approach to assessing change in the psychological contract

The psychological contract is a key analytical device utilised by both academics and practitioners to conceptualise and explore the dynamics of the employment relationship. However, despite the recognised import of the construct, some authors suggest that its empirical investigation has fallen into a 'methodological rut' [Conway & Briner, 2005, p. 89] and is neglecting to assess key tenets of the concept, such as its temporal and dynamic nature. This paper describes the research design of a longitudinal, mixed methods study which draws upon the strengths of both qualitative and quantitative modes of inquiry in order to explore the development of, and changes in, the psychological contract. Underpinned by a critical realist philosophy, the paper seeks to offer a research design suitable for exploring the process of change not only within the psychological contract domain, but also for similar constructs in the human resource management and broader organisational behaviour fields.

Identifying parent perspectives to guide active travel intervention with small populations : case study in Denver, Colorado

This paper investigates a strategy for guiding school-based active travel intervention. School-based active travel programs address the travel behaviors and perceptions of small target populations (i.e., at individual schools) so they can encourage people to walk or bike. Thus, planners need to know as much as possible about the behaviors and perceptions of their target populations. However, existing strategies for modeling travel behavior and segmenting audiences typically work with larger populations and may not capture the attitudinal diversity of smaller groups. This case study used Q technique to identify salient travel-related attitude types among parents at an elementary school in Denver, Colorado; 161 parents presented their perspectives about school travel by rank-ordering 36 statements from strongly disagree to strongly agree in a normalized distribution, single centered around no opinion. Thirty-nine respondents' cases were selected for case-wise cluster analysis in SPSS according to criteria that made them most likely to walk: proximity to school, grade, and bus service. Analysis revealed five core perspectives that were then correlated with the larger respondent pool: optimistic walkers, fair-weather walkers, drivers of necessity, determined drivers, and fence sitters. Core perspectives are presented—characterized by parents' opinions, personal characteristics, and reported travel behaviors—and recommendations are made for possible intervention approaches. The study concludes that Q technique provides a fine-grained assessment of travel behavior for small populations, which would benefit small-scale behavioral interventions

Safety, feasibility and effects of an individualised walking intervention for women undergoing chemotherapy for ovarian cancer : a pilot study

Background: Exercise interventions during adjuvant cancer therapy have been shown to increase functional capacity, relieve fatigue and distress and may assist rates of chemotherapy completion. These studies have been limited to breast, gastric and mixed cancer groups and it is not yet known if a similar intervention is even feasible among women with ovarian cancer. We aimed to assess safety, feasibility and potential effect of a walking intervention in women undergoing chemotherapy for ovarian cancer. Methods: Women newly diagnosed with ovarian cancer were recruited to participate in an individualised walking intervention throughout chemotherapy and were assessed pre-and post-intervention. Feasibility measures included session adherence, compliance with exercise physiologist prescribed walking targets and self-reported program acceptability. Changes in objective physical functioning (6 minute walk test), self-reported distress (Hospital Anxiety and Depression Scale), symptoms (Memorial Symptom Assessment Scale - Physical) and quality of life (Functional Assessment of Cancer Therapy - Ovarian) were calculated, and chemotherapy completion and adverse intervention effects recorded. Results: Seventeen women were enrolled (63% recruitment rate). Mean age was 60 years (SD = 8 years), 88% were diagnosed with FIGO stage III or IV disease, 14 women underwent adjuvant and three neo-adjuvant chemotherapy. On average, women adhered to > 80% of their intervention sessions and complied with 76% of their walking targets, with the majority walking four days a week at moderate intensity for 30 minutes per session. Meaningful improvements were found in physical functioning, physical symptoms, physical well-being and ovarian cancerspecific quality of life. Most women (76%) completed ≥85% of their planned chemotherapy dose. There were no withdrawals or serious adverse events and all women reported the program as being helpful. Conclusions: These positive preliminary results suggest that this walking intervention for women receiving chemotherapy for ovarian cancer is safe, feasible and acceptable and could be used in development of future work. Trial registration: ACTRN12609000252213

The dynamics of parenting and early feeding - constructs and controversies : a viewpoint

There is increasing evidence that parenting and feeding interact to influence children’s eating behaviour and weight status. Interpretation of existing research is complicated by the lack of consensus in the conceptualisation and measurement of both ‘parenting’ and ‘feeding’, particularly the distinction between ‘styles’, ‘dimensions’ and ‘practices’. In addition, the lack of validated tools to concurrently assess feeding practices in infancy limits the capacity to examine the relationships between parenting and feeding in infancy and their short- and long-term influence on weight status. In this paper we provide an overview of the constructs examined in this emerging area of research, highlight the conceptual, definitional and measurement challenges and propose a unifying model to aid design and the interpretation of intervention studies. Progress on these methodological issues will contribute to the robust evidence required to justify investment in interventions that focus on parenting and feeding in the context of child obesity prevention.

Engaging law students to promote psychological health

Recent empirical evidence suggests that concern for the psychological health of law students is well justified. Traditionally, the legal curriculum has focused on the provision of substantive legal doctrinal knowledge. This approach has not always engaged students positively with their learning of law. This article considers some strategies that can be adopted by Law Faculties to better engage students with their legal education in order to promote their psychological health. These strategies are: ensuring that active learning occurs in lectures, demonstrating concern for students and their learning and skillful management of student expectations and the learning environment. Further, some self-help strategies that students can adopt for themselves are discussed. Combined, these strategies will enable students to engage more positively with their legal education.

A randomized trial of a telephone-delivered exercise intervention for non-urban dwelling women newly diagnosed with breast cancer : exercise for health

Physical activity is important following breast cancer. Trials of non-face-to-face interventions are needed to assist in reaching women living outside major metropolitan areas. This study seeks to evaluate the feasibility and effectiveness of a telephone-delivered, mixed aerobic and resistance exercise intervention for non-urban Australian women with breast cancer. A randomized controlled trial comparing an 8-month intervention delivered by exercise physiologists (n = 73) to usual care (n = 70). Sixty-one percent recruitment rate and 96% retention at 12 months; 79% of women in the intervention group received at least 75% of calls; odds (OR, 95% CI) of meeting intervention targets favored the intervention group for resistance training (OR 3.2; 1.2, 8.9) and aerobic (OR 2.1; 0.8, 5.5) activity. Given the limited availability of physical activity programs for non-urban women with breast cancer, results provide strong support for feasibility and modest support for the efficacy of telephone-delivered interventions.