Process evaluation of a maintenance pulmonary rehabilitation trial for people with chronic obstructive pulmonary disease.

BACKGROUND: The ComEx3 community-based extended maintenance pulmonary rehabilitation (PR) randomised controlled trial (RCT) aimed to determine the optimal strategy for maintaining the benefits of exercise for people with chronic obstructive pulmonary disease (COPD). We conducted a process evaluation of this RCT to determine if the trial was implemented per protocol, and to explore the barriers and facilitators of the trial, and mechanisms of impact. METHODS: This was a mixed methods study consisting of analysis of PR class records, study diaries and interviews of those involved in the trial. We developed a reporting framework from available literature and performed a content analysis. RESULTS: Eleven of the 12 participants in the intervention group attended ≥70% of available classes before the trial was terminated due to the COVID-19 pandemic. Analysis of the study diaries found that adherence to the home exercise program was higher in the intervention than the control group. Analyses of interviews (n = 21) highlighted the complexity of standardising the processes across multiple sites, but revealed behaviour change amongst class physiotherapists who were able to conform with the required processes. Facilitators of participation included the desire to improve function and quality of life, while barriers included illnesses and lack of motivation. Mechanisms of impact included confidence in exercising and benefits from the education sessions. CONCLUSIONS: The ComEx3 RCT was implemented as planned largely due to commitment by the research team and the desire by patients to improve their quality of life by attending a PR program that they are familiar with. Successful implementation of PR RCTs requires good organisational skills, clear and consistent trial documentation, broad understanding of participant needs while being conscious of challenges experienced by people with COPD, and dedication by everyone involved in the RCT. SO WHAT?: This article shows the importance of running a process evaluation alongside an RCT. Although this RCT did not progress to completion, this process evaluation which was guided by a robust framework, will provide guidance for future interventions in this area.

Priorities for building Australian workforce capacity to leverage population-based, routinely collected data: views from pharmacoepidemiology.

AIM: To explore perspectives of leaders in pharmacoepidemiology on building workforce capacity in the routinely collected data arena to enable researchers to generate evidence to support clinical and policy decision-making. METHODS: Semi-structured interviews were conducted between May and August 2018 with 13 leaders in pharmacoepidemiology in Australia. Discussion topics included training needs, workforce enablers, barriers and priorities for building capacity. The data was analysed using a content analysis approach. RESULTS: Leaders identified a range of knowledge and skills that are needed to work with routinely collected data and generate evidence to support clinical and policy decision making. Enablers identified included collaborations and promoting awareness to attract new people to work with this data type. Barriers included difficulty accessing data, lack of critical mass of human capital to build skill levels and funding issues. CONCLUSIONS: Building workforce capacity involves addressing identified enablers and barriers. Central to building workforce capacity is the harmonisation of Australia's data infrastructure, which can improve the way people work, learn, collaborate, share ideas and expand their professional network.

The diagnostic odyssey: insights from parents of children living with an undiagnosed condition.

BACKGROUND: People living with rare disease often have protracted journeys towards diagnosis. In the last decade, programs have arisen around the world that are dedicated to ending this 'diagnostic odyssey', including the Undiagnosed Diseases Program Western Australia (UDP-WA), which has a focus on finding diagnoses for children and young adults. To explore the lived experience of the diagnostic journey semi-structured interviews were conducted with parents of 11 children at commencement of their involvement in the UDP-WA. RESULTS: Thematic analysis revealed three main themes that captured parents' experiences and perspectives. Parents reported (i) the need to respond to significant care needs of their children, which span not only the health system but other systems such as education and disability services. In doing so, parents become the navigator, expert and advocate for their children. Meanwhile, parents are on (ii) the diagnostic odyssey-the rollercoaster of their journey towards diagnosis, which includes various names applied to their child's condition, and the impact of no diagnosis. Parents described their views on (iii) the value of a diagnosis and the outcomes they expect to be associated with a diagnosis. CONCLUSION: Analysis showed an overall significant perceived value of a diagnosis. Our study provides new perspectives on the concept of diagnosis and indicates that parents may benefit from supports for their child's care needs that are beyond the scope of the UDP-WA.

Health promotion in an Australian Aboriginal community: the Growing Strong Brains® toolkit.

AIM: The aim of this paper is to describe the implementation and evaluation of the Growing Strong Brains® (GSB) toolkit in a remote Aboriginal community in Western Australia (WA) over a 2-year period, 2018-2019. BACKGROUND: Ngala, a community service organisation in WA, developed the GSB toolkit in 2014, a culturally appropriate and interactive resource to build knowledge of early childhood development within Aboriginal communities. This was in response to evidence that a higher percentage of children in Aboriginal communities were developmentally vulnerable compared to the rest of the population. The GSB toolkit promotes awareness and understanding of early brain development pre-birth and in the early years of a child's life. METHODS: The project was underpinned by participatory action research (PAR). Reflective PAR review cycles (n = 5) monitored local community engagement, navigated challenges and utilised community strengths. Fifty-nine local service providers attended a 2-day formal training. Data were collected by using various methods throughout the project, including feedback following training, focus groups, surveys, one-on-one interviews using yarning techniques and reflective feedback from the Project Lead. FINDINGS: Establishing local Aboriginal project staff was pivotal to the success of the project. When delivering services for and with Aboriginal people, it is essential that cultural competence, safety and decision-making is carried through from planning to implementation and evaluation, and involves genuine, respectful and authentic relationships. Sufficient time allocation directed towards building relationships with other service providers and local community members needs to be considered and built into future projects.The Growing Strong Brains® project is embedded within the local community, and anticipated implementation outcomes were achieved. The support of the local people and service providers was beyond expectation, enabling the building of local capacity, and the development of a common understanding of the key messages from the GSB toolkit to allow integration throughout all levels of the community. This project has been important to build on the strategies necessary to introduce, implement and evaluate the GSB toolkit in other remote Aboriginal communities.

Living liveable? RESIDE's evaluation of the "Liveable Neighborhoods" planning policy on the health supportive behaviors and wellbeing of residents in Perth, Western Australia.

BACKGROUND: The RESIDential Environments (RESIDE) project is a unique longitudinal natural experiment designed to evaluate the health impacts of the "Liveable Neighbourhoods" planning policy, which was introduced by the Western Australian government to create more walkable suburbs. OBJECTIVES: To summarize the RESIDE evidence of the impact of the planning policy on a range of health-supportive behaviours and wellbeing outcomes and to assess the consistency and direction of the estimates of associations. METHODS: An audit of 26 RESIDE research papers (from 2003 to 2012) identified the number of positive associations (statistically significant and consistent with policy expectations), negative associations (statistically significant and inconsistent with policy expectations), and null findings from multiple-exposure models between objective and perceived measures of 20 policy design requirements and 13 health-supportive behaviors and wellbeing outcomes. RESULTS: In total 332 eligible estimates of associations (n = 257 objective measures and n = 75 perceived measures) were identified. Positively significant findings were detected for: 57% of walking estimates with objectively measured policy design features (negative = 3%; null = 40%) (n = 115) and 54% perceived measures (negative = 0%; null = 33%) (n = 27); 42% of sense of community estimates with objectively measured of policy design features (negative = 8%; null = 50%) (n = 12) and 61% perceived measures (negative = 8%; null = 31%) (n = 13); 39% of safety or crime-related estimates with objectively measured of policy design features (negative = 22%; null = 39%) (n = 28) and 100% perceived measures (n = 7). All (n = 4) estimates for mental health outcomes with objectively measured policy-related design features were positively significant. CONCLUSIONS: The synthesis of findings suggests that new suburban communities built in accordance with the "Liveable Neighbourhoods" policy have the potential to encourage health supportive behaviors and wellbeing outcomes including transport and recreation walking, and to create neighborhoods with a stronger sense of community where residents may feel safer.

A qualitative evaluation of a Young Parents Program (YPP) - Parent and facilitator perspectives.

ISSUE ADDRESSED: Young parents (<25 years) have lower engagement with health and community services and are more likely to experience negative outcomes in the perinatal period compared to older parents. The aim of this study was to evaluate the short to medium-term outcomes of the Young Parents Program (YPP), specifically designed to engage and support young parents, using responsive and codesign strategies in a community setting. METHODS: A qualitative case study used data from interviews with participating parents (n = 20) and a focus group with YPP facilitators (n = 5). RESULTS: The findings report on the following short to medium-term YPP outcomes for parents and children. Young parents: are engaged in early parenting services that are welcoming, nonjudgemental and holistic; build parenting skills, knowledge, confidence and are tuned into their infants' needs; are empowered to codesign program activities to meet their parenting and nonparenting needs; have developed friendships and a social support network in their local community; and, are linked into community services and resources. Their children are cared for and stimulated with age-appropriate interactions and play. CONCLUSION: Flexible, responsive and codesigned programs for young parents are effective means of connecting parents to services, social support networks and can provide learning opportunities, which enhance both child and parent attachment and development. SO WHAT?: Qualitative evaluation provides an understanding of contextual factors - required to inform effective design and delivery of young parent community programs.

Increasing multimorbidity in an Australian street health service: A 10-year retrospective cohort study

Background and objectives: Street-based clinics provide general practice services to marginalised and homeless persons. The objective of this study was to examine prevalence, patterns and severity of multimorbidity in patients attending one such service. Method: A retrospective cohort study (2006­15), comprising medical record review of patients (n = 4285), was undertaken. A Cumulative Illness Rating Scale (CIRS) was used to assess multimorbidity. Results: Average age of patients was 38.2 ± 17.9 years. Of 31.5% Aboriginal patients, 50.8% were female (37.6% in non Aboriginal patients). Of all patients, 53% had multimorbidity. Aboriginal patients had higher rates of multimorbidity than non-Aboriginal patients (58.0% vs 50.6%, P <0.001). Psychiatric, musculoskeletal (especially skin) and respiratory conditions were most common. Disease severity was mild to moderate, with 26.8% having at least one severe or extremely severe condition. Multimorbidity and disease severity increased between 2006­11 and 2012­15. Aboriginality was the strongest predictor of multimorbidity (odds ratio [OR] = 2.1; 95% confidence interval [CI]: 1.8­2.4; P <0.001). Discussion: Street-based general practice services are critical to facilitate easy access to primary and secondary management of chronic multimorbid conditions in marginalised (especially Aboriginal) patients.

A general practice street health service: Patient and allied service provider perspectives

DISCUSSION: People who are homeless or marginalised have poor engagement with mainstream healthcare services. The aim of this study was to explore patient and staff perspectives of a street-based, primary health service, to help identify factors influencing patient access and management. A qualitative study was undertaken from April to September 2016. Interviews (n = 27) explored patients' experiences of accessing healthcare services. Interviews with allied service staff (n = 5) explored referral pathways and patients' access to healthcare.  Factors influencing patients' willingness to access primary healthcare through the street health service were identified as doctor­patient empathy, better understanding of patient circumstances, fostering of social capital, facilitating referral pathways and supporting the transition to mainstream general practice as circumstances improve. Hospital discharge planning and follow-up management were identified as gaps in the continuity of service. Ease of access provided by a street-based health service facilitates access to the healthcare system for homeless and marginalised patients. 

Local community playgroup participation and associations with social capital.

Issue addressed The study aim was to investigate the relationships between social capital measures and playgroup participation in a local residential area for parents with children of playgroup age (1-4 years) compared with non-participation and participation in a playgroup outside the local residential area. Research indicates playgroup participation has benefits for families, however, less is known about the potential local community social capital for parents who participate in playgroups. Methods Data were collected through a cross-sectional survey from March 2013 to January 2014 in Perth, Western Australia. The data from a group of parents (n=405) who had at least one child aged between 1 and 4 years were analysed using multivariable regression. Reported playgroup participation (local, outside the area or non-participation) in the previous 12 months was investigated for associations with three measures (Neighbourhood Cohesion Index, Social Capital and Citizenship Survey and local reciprocity) that capture attributes of social capital. Results Participation in playgroup locally was generally associated with higher levels of social capital than both participation in playgroup outside the local area and non-participation. Mothers with two or more children fared better for social capital measures than mothers with one child. Conclusions Participation in a locally placed playgroup may provide an important opportunity for families with children of playgroup age (1-4 years) to build social capital in their local community. So what? Playgroups in a family's local area have the potential to foster locally placed social capital through community interaction, social networks and cohesion, which are important for mental health promotion in communities.

Mothers' group participation: associations with social capital, social support and mental well-being.

AIM: To investigate the relationships between participation in mothers' groups and social capital, social support and mental well-being measures for mothers whose oldest child was 0-5 years. BACKGROUND: Evaluations of facilitated mothers' groups have found positive benefits for information sharing and support. Mothers' groups often continue as parent-led groups; however, little is known about the potential benefits of ongoing participation compared with non-participation. DESIGN: Cross-sectional survey. METHODS: Data were collected through a survey from March 2013-January 2014 in Perth, Western Australia. The data from a subgroup of mothers (N = 313) whose oldest child was 0-5 years of age were analysed using multivariable regression. Participation in mothers' groups in the previous 12 months was investigated for associations with social capital {Neighbourhood Cohesion Index (NCI); Families, Social Capital and Citizenship Survey (FSCCS) and Reciprocity}; social support {Medical Outcomes Study-Social Support Survey (MOS-SSS) and Parent Support Outside Home Scale (PSOHS)}; and mental well-being {Warwick Edinburgh Mental Well-Being Scale (WEMWBS)}. Participation was measured as three groups - locally, outside area of residence and non-participation. RESULTS: Mothers who participated in mothers' groups locally scored significantly higher than those who had not participated in mothers' group for 'social capital' (NCI, FSCCS, Reciprocity), 'social support' (MOS-SSS, PSOHS) and 'mental well-being' (WEMWBS). Mothers who participated in mothers' group outside the area scored significantly higher than those who had not participated in mothers' groups for one measure of 'social support' (PSOHS). CONCLUSIONS: Participation in mothers' group locally may provide support and social capital benefits for mothers of children aged 0-5 years, which may influence mental well-being.

Fostering supportive community connections through mothers' groups and playgroups.

AIM: The aim of this study was to explore the ways that mothers' groups and playgroups support families with children aged 0-5 years and foster community connectedness in newer residential communities in Perth, Western Australia. BACKGROUND: The transition to parenthood is a time of increased support need. Changing community demography has resulted in a loss of traditional support structures and an increased need for local community initiatives to support families with young children. DESIGN: A qualitative descriptive design was used for this initial phase of a mixed methods sequential exploratory study. METHOD: Data were collected between December 2011-August 2012. Interviews and focus groups conducted with 39 mothers provided insights from 16 mothers' groups and 13 playgroups. In addition, interviews were undertaken with three child health nurses and four local government early childhood staff. FINDINGS: For the participants in this study, mothers' groups and playgroups provided opportunities to learn about parenting, to build a supportive network, to forge friendships and a connectedness to the local community. The families who relocated often experienced isolation until new groups and social networks were found. In general, where participation in mothers' groups and playgroups facilitated relationships with others from the local community, connectedness to that community was reported by participants to be enhanced. CONCLUSION: Mothers' groups and playgroups provide important community development opportunities and appear to help reduce potential isolation for mothers with young children. The findings are of interest to nurses and other health professionals working with families with young children.