Development of a scale to measure shared problem-solving and decision-making in mental healthcare.

OBJECTIVES: The aim of this study was to create a measure of collaborative processes between healthcare team members, patients, and carers. METHODS: A shared decision-making scale was developed using a qualitative research derived model and refined using Rasch and factor analysis. The scale was used by staff in the hospital for four consecutive years (n = 152, 121, 119 and 121) and by two independent patients' and carers' samples (n = 223 and 236). RESULTS: Respondents had difficulty determining what constituted a decision and the scale was redeveloped after first use in patients and carers. The initial focus on shared decision-making was changed to shared problem-solving. Two factors were found in the first staff sample: shared problem-solving and shared decision-making. The structure was confirmed on the second patients' and carers' sample and an independent staff sample consisting of the first data-points for the last three years. The shared problem-solving and decision-making scale (SPSDM) demonstrated evidence of convergent and divergent validity, internal consistency, measurement invariance on longitudinal data and sensitivity to change. CONCLUSIONS: Shared problem-solving was easier to measure than shared decision-making in this context. PRACTICE IMPLICATIONS: Shared problem-solving is an important component of collaboration, as well as shared decision-making.

Creation of consensus recommendations for collaborative practice in the Malaysian psychiatric system: a modified Delphi study.

BACKGROUND: There is strong evidence that collaborative practice in mental healthcare improves outcomes for patients. The concept of collaborative practice can include collaboration between healthcare workers of different professional backgrounds and collaboration with patients, families and communities. Most models of collaborative practice were developed in Western and high-income countries and are not easily translatable to settings which are culturally diverse and lower in resources. This project aimed to develop a set of recommendations to improve collaborative practice in Malaysia. METHODS: In the first phase, qualitative research was conducted to better understand collaboration in a psychiatric hospital (previously published). In the second phase a local hospital level committee from the same hospital was created to act on the qualitative research and create a set of recommendations to improve collaborative practice at the hospital for the hospital. Some of these recommendations were implemented, where feasible and the outcomes discussed. These recommendations were then sent to a nationwide Delphi panel. These committees consisted of healthcare staff of various professions, patients and carers. RESULTS: The Delphi panel reached consensus after three rounds. The recommendations include ways to improve collaborative problem solving and decision making in the hospital, ways to improve the autonomy and relatedness of patients, carers and staff and ways to improve the levels of resources (e.g. skills training in staff, allowing people with lived experience of mental disorder to contribute). CONCLUSIONS: This study showed that the Delphi method is a feasible method of developing recommendations and guidelines in Malaysia and allowed a wider range of stakeholders to contribute than traditional methods of developing guidelines and recommendations.Trial registration Registered in the National Medical Research Register, Malaysia, NMRR-13-308-14792.

Attitudes towards abortion in male and female adolescents with diverse sexual and pregnancy experiences: a cross-sectional study.

Background Research focused on adolescents' attitudes towards abortion is limited, and validated scales are not routinely used. A greater understanding of adolescents' attitudes towards abortion could better inform the sexuality education strategies targeted at this age group. METHODS: A cross-sectional survey was completed by 1470 adolescents (437 males, 1033 females) aged 12-19 years and living in Perth, Australia. Participants were recruited from secondary schools, antenatal clinics and termination clinics to capture varying experiences of sexual activity and pregnancy. Survey items investigated abortion attitudes, sexual behaviour and pregnancy history alongside other demographic and psychosocial factors. Analyses included comparative means and adjusted linear regressions. RESULTS: Sexually active participants (n = 554) and females reporting a previous abortion (n = 196) held more supportive attitudes towards abortion (P < 0.001 for both). Among sexually active females, more supportive attitudes were held by those reporting a previous abortion (ß = 2.60, 95% confidence interval 0.93-4.27, P = 0.002), later age (≥16 years) at first vaginal intercourse (P < 0.001), use of oral contraception at last sex (P = 0.029), previous condom use (P < 0.001) and/or three or more oral sex partners in the previous 12 months (P = 0.005). For sexually active males, more supportive attitudes were reported by those whose female partners had used oral contraception at last sex (P = 0.013) or ever (P = 0.017). Multivariable analyses indicated that other correlates, including risky sexual behaviour, had minimal or no effect on attitudes. CONCLUSIONS: Adolescents' attitudes towards abortion appear to be influenced by their ability to personalise and contextualise the effect of a pregnancy. Associations between less-effective contraceptive use and reduced support for abortion may be explained by a diminished perceived risk of parenthood. Educational strategies should acknowledge and respond to differences in abortion attitudes as adolescents commence and navigate sexual relationships.

Does an incremental approach to implementing programmatic assessment work? Reflections on the change process.

This article was migrated. The article was marked as recommended. In 2017, the School of Medicine (Fremantle) of the University of Notre Dame Australia began moving towards programmatic assessment. Programmatic assessment seeks to achieve robust assessment validity through the assessment of a large number of low-stakes activities or data points. These data points exemplify assessment as learning by valuing feedback, discussion and reflection, ultimately leading to deeper student engagement without compromising credible decision-making on student progress. The School adopted an incremental approach to implementing programmatic assessment that included first establishing data-informed mentoring, and then activating a continuous assessment program that contributed simultaneously to student learning and School decision-making. Action research helped understand the impact of the initiative. Re-engineering continuous assessment as an incremental step towards programmatic assessment proved to be problematic. Some ideas are proposed to draw the strands of programmatic assessment together that may be useful for others to chart a more fruitful path.

Barriers and enablers to collaboration in the mental health system in Sabah, Malaysia: towards a theory of collaboration.

BACKGROUND: The systems that help people with mental disorders in Malaysia include hospitals, primary care, traditional and religious systems, schools and colleges, employers, families and other community members. AIMS: To better understand collaboration between and within these systems and create a theoretical framework for system development. METHOD: A total of 26 focus groups and 27 individual interviews were undertaken with patients, carers, psychiatric hospital staff, primary care and district hospital staff, religious and traditional healers, community leaders, non-governmental organisation workers, and school and college counsellors. Grounded theory methods were used to analyse the data and create a theory of collaboration. RESULTS: Three themes both defined and enabled collaboration: (a) collaborative behaviours; (b) motivation towards a common goal or value; and (c) autonomy. Three other enablers of collaboration were identified: (d) relatedness (for example trusting, understanding and caring about the other); (e) resources (competence, time, physical resources and opportunities); and (f) motivation for collaboration (weighing up the personal costs versus benefits of acting collaboratively). CONCLUSIONS: The first three themes provided a definition of collaboration in this context: 'two or more parties working together towards a common goal or value, while maintaining autonomy'. The main barriers to collaboration were lack of autonomy, relatedness, motivation and resources, together with the potential cost of acting collaboratively without reciprocation. Finding ways to change these structural, cultural and organisational features is likely to improve collaboration in this system and improve access to care and outcomes for patients.

Reactions to symptoms of mental disorder and help seeking in Sabah, Malaysia.

BACKGROUND: A better understanding is needed about how people make decisions about help seeking. MATERIALS: Focus group and individual interviews with patients, carers, healthcare staff, religious authorities, traditional healers and community members. DISCUSSION: Four stages of help seeking were identified: (1) noticing symptoms and initial labelling, (2) collective decision-making, (3) spiritual diagnoses and treatment and (4) psychiatric diagnosis and treatment. CONCLUSION: Spiritual diagnoses have the advantage of being less stigmatising, giving meaning to symptoms, and were seen to offer hope of cure rather than just symptom control. Patients and carers need help to integrate different explanatory models into a meaningful whole.

Introducing the individual Teamwork Observation and Feedback Tool (iTOFT): Development and description of a new interprofessional teamwork measure.

The individual Teamwork Observation and Feedback Tool (iTOFT) was devised by a consortium of seven universities in recognition of the need for a means of observing and giving feedback to individual learners undertaking an interprofessional teamwork task. It was developed through a literature review of the existing teamwork assessment tools, a discussion of accreditation standards for the health professions, Delphi consultation and field-testing with an emphasis on its feasibility and acceptability for formative assessment. There are two versions: the Basic tool is for use with students who have little clinical teamwork experience and lists 11 observable behaviours under two headings: 'shared decision making' and 'working in a team'. The Advanced version is for senior students and junior health professionals and has 10 observable behaviours under four headings: 'shared decision making', 'working in a team', 'leadership', and 'patient safety'. Both versions include a comprehensive scale and item descriptors. Further testing is required to focus on its validity and educational impact.

Clinical Guidelines for Management of Bone Health in Rett Syndrome Based on Expert Consensus and Available Evidence.

OBJECTIVES: We developed clinical guidelines for the management of bone health in Rett syndrome through evidence review and the consensus of an expert panel of clinicians. METHODS: An initial guidelines draft was created which included statements based upon literature review and 11 open-ended questions where literature was lacking. The international expert panel reviewed the draft online using a 2-stage Delphi process to reach consensus agreement. Items describe the clinical assessment of bone health, bone mineral density assessment and technique, and pharmacological and non-pharmacological interventions. RESULTS: Agreement was reached on 39 statements which were formulated from 41 statements and 11 questions. When assessing bone health in Rett syndrome a comprehensive assessment of fracture history, mutation type, prescribed medication, pubertal development, mobility level, dietary intake and biochemical bone markers is recommended. A baseline densitometry assessment should be performed with accommodations made for size, with the frequency of surveillance determined according to individual risk. Lateral spine x-rays are also suggested. Increasing physical activity and initiating calcium and vitamin D supplementation when low are the first approaches to optimizing bone health in Rett syndrome. If individuals with Rett syndrome meet the ISCD criterion for osteoporosis in children, the use of bisphosphonates is recommended. CONCLUSION: A clinically significant history of fracture in combination with low bone densitometry findings is necessary for a diagnosis of osteoporosis. These evidence and consensus-based guidelines have the potential to improve bone health in those with Rett syndrome, reduce the frequency of fractures, and stimulate further research that aims to ameliorate the impacts of this serious comorbidity.

Longitudinal bone mineral content and density in Rett syndrome and their contributing factors.

Bone mass and density are low in females with Rett syndrome. This study used Dual energy x-ray absorptiometry to measure annual changes in z-scores for areal bone mineral density (aBMD) and bone mineral content (BMC) in the lumbar spine and total body in an Australian Rett syndrome cohort at baseline and then after three to four years. Bone mineral apparent density (BMAD) was calculated in the lumbar spine. Annual changes in lean tissue mass (LTM) and bone area (BA) were also assessed. The effects of age, genotype, mobility, menstrual status and epilepsy diagnosis on these parameters were also investigated. The baseline sample included 97 individuals who were representative of the total live Australian Rett syndrome population under 30years in 2005 (n=274). Of these 74 had a follow-up scan. Less than a quarter of females were able to walk on their own at follow-up. Bone area and LTM z-scores declined over the time between the baseline and follow-up scans. Mean height-standardised z-scores for the bone outcomes were obtained from multiple regression models. The lumbar spine showed a positive mean annual BMAD z-score change (0.08) and a marginal decrease in aBMD (-0.04). The mean z-score change per annum for those 'who could walk unaided' was more positive for LS BMAD (p=0.040). Total body BMD mean annual z-score change from baseline to follow-up was negative (-0.03). However this change was positive in those who had achieved menses prior to the study (0.03, p=0,040). Total body BMC showed the most negative change (-0.60), representing a decrease in bone mineral content over time. This normalised to a z-score change of 0.21 once adjusted for the reduced lean tissue mass mean z-score change (-0.21) and bone area mean z-score change (-0.14). Overall, the bone mineral content, bone mineral density, bone area and lean tissue mass z-scores for all outcome measures declined, with the TB BMC showing significant decreases. Weight, height and muscle mass appear to have impacts on bone formation and we recommend that nutritional intake should be closely monitored and a physical activity plan developed to optimise bone health. Pubertal progression should also be assessed in conjunction with serial densitometry assessments to track bone mass and density changes over time.

Scale construction utilising the Rasch unidimensional measurement model: A measurement of adolescent attitudes towards abortion.

BACKGROUND: Measurement scales seeking to quantify latent traits like attitudes, are often developed using traditional psychometric approaches. Application of the Rasch unidimensional measurement model may complement or replace these techniques, as the model can be used to construct scales and check their psychometric properties. If data fit the model, then a scale with invariant measurement properties, including interval-level scores, will have been developed. AIMS: This paper highlights the unique properties of the Rasch model. Items developed to measure adolescent attitudes towards abortion are used to exemplify the process. METHOD: Ten attitude and intention items relating to abortion were answered by 406 adolescents aged 12 to 19 years, as part of the "Teen Relationships Study". The sampling framework captured a range of sexual and pregnancy experiences. Items were assessed for fit to the Rasch model including checks for Differential Item Functioning (DIF) by gender, sexual experience or pregnancy experience. RESULTS: Rasch analysis of the original dataset initially demonstrated that some items did not fit the model. Rescoring of one item (B5) and removal of another (L31) resulted in fit, as shown by a non-significant item-trait interaction total chi-square and a mean log residual fit statistic for items of -0.05 (SD=1.43). No DIF existed for the revised scale. However, items did not distinguish as well amongst persons with the most intense attitudes as they did for other persons. A person separation index of 0.82 indicated good reliability. CONCLUSION: Application of the Rasch model produced a valid and reliable scale measuring adolescent attitudes towards abortion, with stable measurement properties. The Rasch process provided an extensive range of diagnostic information concerning item and person fit, enabling changes to be made to scale items. This example shows the value of the Rasch model in developing scales for both social science and health disciplines.

Bone mineral content and density in Rett syndrome and their contributing factors.

This study used densitometry to investigate the areal bone mineral density (aBMD) and bone mineral content (BMC) in an Australian Rett syndrome cohort and to assess how factors such as genotype, epilepsy, BMI, and mobility affect these parameters. The influence of lean tissue mass (LTM) and bone area (BA) on total body BMC (TBBMC) was also investigated. Participants, recruited from the Australian Rett Syndrome Database (ARSD), had TBBMC and lumbar spine (LS) and femoral neck (FN) aBMD measured using Dual energy x-ray absorptiometry. Mean height standardized Z scores and CIs for the bone outcomes were obtained from multiple regression models. The mean height Z score for the FN aBMD was low at -2.20, while the LS aBMD was -0.72. The TBBMC mean height Z score was -0.62, although once adjusted for BA and LTM, the mean was above zero, suggesting that low BMC can be explained by narrow bones and decreased muscle mass, likely secondary to decreased mobility. Multiple linear regression identified the p.R168× and p.T158M mutations as the strongest predictors of low aBMC and BMD for all bone outcomes. The strong relationship between genotype, BMC, and aBMD is likely underpinned by the strong relationship between LTM, mobility, and bone outcome measures.

Guidelines for management of scoliosis in Rett syndrome patients based on expert consensus and clinical evidence.

STUDY DESIGN: Modified Delphi technique. OBJECTIVE: To develop guidelines for the clinical management of scoliosis in Rett syndrome through evidence review and consensus expert panel opinion. SUMMARY OF BACKGROUND DATA: Rett syndrome is a rare disorder and clinical expertise is thus with small case series. Scoliosis is a frequent association and the evidence base dealing with scoliosis management in this syndrome is limited. Parents of affected girls and women have expressed needs for more information about scoliosis and Rett syndrome. METHODS: An initial draft of scoliosis guidelines was created based on literature review and open-ended questions where the literature was lacking. Perspectives of four parents of Rett syndrome patients informed this initial draft. Access to an online and a Microsoft Word formatted version of the draft were then sent to an international, multidisciplinary panel of clinicians via e-mail with input sought using a 2-stage modified Delphi process to reach consensus agreement. Items included clinical monitoring and intervention before the diagnosis of scoliosis; monitoring after the diagnosis of scoliosis; imaging; therapy and conservative management; bracing; and preoperative, surgical, and postoperative considerations. RESULTS: The first draft contained 71 statements, 65 questions. The second draft comprised 88 items with agreement to strong agreement achieved on 85, to form the final guideline document. A comprehensive, life-span approach to the management of scoliosis in Rett syndrome is recommended that takes into account factors such as physical activity, posture, nutritional and bone health needs. Surgery should be considered when the Cobb angle is approximately 40 degrees to 50 degrees and must be supported by specialist management of anesthesia, pain control, seizures, and early mobilization. CONCLUSION: Evidence- and consensus-based guidelines were successfully created and have the potential to improve care of a complex comorbidity in a rare condition and stimulate research to improve the current limited evidence base.

Parental experiences of scoliosis management in Rett syndrome.

BACKGROUND: Scoliosis is the most common orthopaedic complication of Rett syndrome. Parents of affected individuals are vital partners in the clinical management of scoliosis and this study explored parental experiences of various aspects of different management options. METHODS: Publicly available Rettnet postings informed the development of an online questionnaire about scoliosis and its management in Rett syndrome. Parents of subjects who met the criteria for Rett syndrome participated in a survey using this questionnaire. RESULTS: One hundred and eighty families participated in this study with scoliosis having developed in 135 (75.4%) of subjects. Eighty-four (62.2% of subjects with scoliosis) had received specific treatment for scoliosis while 51 (37.8%) had not. Surgery was perceived as improving the scoliosis in the majority of subjects but had considerable emotional effects for families of subjects who were less severely affected (p = 0.055) or older (p = 0.063). Physiotherapy and bracing were perceived as not reducing the progression of the curve, but physiotherapy was frequently reported to be beneficial to the subject's quality of life and bracing was frequently associated with side effects such as decreased mobility and problems with pressure. Only half of respondents felt that information about scoliosis provided by clinicians was adequate. CONCLUSIONS: The perspectives of parents provided useful insights into the complexities of decision-making regarding scoliosis treatment in Rett syndrome. The provision of scoliosis information by clinicians should be more family-centred.

Pregnancy and protection: perceptions, attitudes and experiences of Australian female adolescents.

BACKGROUND AND PURPOSE: Despite decades of research, development and evaluation of educational and promotional strategies to prevent teenage pregnancy, we have only a limited understanding of the strategies that are effective and why. This study sought to explore female teenagers' attitudes, perceptions and experiences of contraceptive use, and describe the influence of this on pregnancy risk. METHODS: A qualitative approach was used to explore the contraceptive behaviour in a purposive sample of sexually active Australian females aged 14-19 years. Teenagers were drawn from three sub-groups: antenatal and postnatal services (pregnant-continuing); termination services (pregnant-terminating); and sexual health clinics (never-pregnant). Sixty-eight individual, semi-structured interviews were conducted. Thematic analysis was employed to analyse the data and generate a rich, description of contraceptive behaviour. RESULTS: Whilst participants were familiar with contraception, many used it inconsistently. Commitment to pregnancy prevention was firmly located within participants' attitudes toward teenage pregnancy and parenthood, perceptions of pregnancy risk and perceptions of the costs and benefits of using contraception. Further, motivation to use contraception fluctuated in different contexts, such as romantic relationships. CONCLUSIONS: Our research highlights the importance of attitudes toward contraception, pregnancy and parenthood in shaping teenagers' motivation to use contraception. Educational and prevention programs must address the spectrum of attitudes underlying teenagers' contraceptive and reproductive decisions in order to alter pathways to teenage pregnancy and early parenting.

InterRett, a model for international data collection in a rare genetic disorder.

Rett syndrome (RTT) is a rare genetic disorder within the autistic spectrum. This study compared socio-demographic, clinical and genetic characteristics of the international database, InterRett, and the population based Australian Rett syndrome database (ARSD). It also explored the strengths and limitations of InterRett in comparison with other studies. A literature review compared InterRett with RTT population-based and case-based studies of thirty or more cases that investigated genotype and/or phenotype relationships. Questionnaire data were used to determine case status and to investigate the comparability of InterRett and ARSD. Twenty four case series, five population based studies and a MECP2 mutation database were identified of which twenty one (70%) collected phenotype and genotype data. Only three studies were representative of their underlying case population and many had low numbers. Of one thousand one hundred and fourteen InterRett subjects, nine hundred and thirty five born after 1976 could be verified as Rett cases and compared with the two hundred and ninety five ARSD subjects. Although more InterRett families had higher education and occupation levels and their children were marginally less severe, the distribution of MECP2 mutation types was similar. The InterRett can be used with confidence to investigate genotype phenotype associations and clinical variation in RTT and provides an exemplary international model for other rare disorders.

Perceptions and experiences of first sexual intercourse in Australian adolescent females.

PURPOSE: To better understand the factors that influence the initiation of first intercourse among adolescent females and to explore the context in which this occurs. METHODS: A purposive sample of sexually active female teenagers aged between 14 and 19 years were recruited from sexual and reproductive health clinics across the Perth metropolitan area. Sixty-eight in-depth, semistructured interviews were conducted. Thematic analysis was employed to analyze the narrative data. Meanings and interpretations that emerged were constantly verified through subsequent inquiry. RESULTS: The degree of personal control over the factors that led to their first experience of intercourse determined how teenagers reflected upon the experience. Those who were "ready" were more likely to have delayed intercourse until they were comfortable with both when and with whom this occurred. In contrast, conforming to peer norms, coercion from sexual partners and being intoxicated were common reasons for premature and unwanted first experience of sexual intercourse. CONCLUSIONS: The explorative approach used in this study deepens current understanding of the factors influencing and associated with intercourse initiation, and how these reflect different aspects of adolescent development. In particular, the role of young peoples' sociocultural environment, including peer interaction and alcohol intoxication, alongside pressure from sexual partners in premature and unwanted sexual activity may assist in informing educational interventions of greater personal relevance and impact.

Health service use in Rett syndrome.

Rett syndrome is a severe neurodevelopmental disorder affecting girls, caused by mutations in the MECP2 gene. There are no population-based data on the extent and determinants of health service use in this disorder. The population-based registry, the Australian Rett Syndrome database, was the source of phenotype data. This also contains data from mutation screening and X-inactivation studies. Data on retrospective (n = 152) and prospective (n = 162) health service use were collected in 2000 from a questionnaire and a calendar study, respectively. Health service use was highest in younger cases (P = .001) and lowest in cases with milder phenotypes (P < .001). Random X-inactivation was associated with service use (P = .02). Maternal education, phenotype, and individual mutations were determinants of health service use. The use of a retrospective and prospective data set enabled accurate assessment of service use in Rett syndrome. Both genetic and sociodemographic determinants of health service use were identified, with important implications for the optimal and equitable management of children with Rett syndrome.