Strong Carers, Strong Communities: a cluster randomised controlled trial to improve wellbeing of family carers of older people in remote Aboriginal communities.

INTRODUCTION: Unpaid carers have a crucial role in supporting older people with cognitive impairment and disability, but their own health and wellbeing are often impacted. There are limited data on how carer strain, depression and empowerment may be improved for carers. METHODS: This was a cluster randomised controlled trial to compare the effect of a carer support program developed with a community-based participatory action research (PAR) approach to the delivery of information sessions to 100 carers of people aged 45 years or more living in four remote Aboriginal communities in Western Australia. RESULTS: The mean age of carers was 38.3±14.9 years, 76% were female and 77% were children or grandchildren of the care recipient. Carer strain and empowerment measures did not change significantly between baseline and follow-up. A statistically significant decrease in depression scores was observed in the PAR group. However, decreases were observed in both the PAR and control groups, and the change in scores did not differ significantly between groups. Depression scores decreased most in those who had not attended high school. Overall, the proportion of participants meeting criteria for depression decreased from 18.8% at baseline to 8.3% at follow-up. CONCLUSION: A carer support program was of equivocal benefit, although this research demonstrates that the wellbeing of carers in remote Aboriginal communities can potentially be markedly improved by outreach strategies.

The quality of health services provided to remote dwelling aboriginal infants in the top end of northern Australia following health system changes: a qualitative analysis.

BACKGROUND: In Australia the health outcomes of remote dwelling Aboriginal infants are comparable to infants in developing countries. This research investigates service quality, from the clinicians' perspective and as observed and recorded by the researcher, in two large Aboriginal communities in the Top End of northern Australia following health system changes. METHODS: Data were collected from semi-structured interviews with 25 clinicians providing or managing child health services in the two study sites. Thirty hours of participant observation was undertaken in the 'baby-rooms' at the two remote health centres between June and December 2012. The interview and observational data, as well as field notes were integrated and analysed thematically to explore clinicians' perspectives of service delivery to infants in the remote health centres. RESULTS: A range of factors affecting the quality of care, mostly identified before health system changes were instigated, persisted. These factors included ineffective service delivery, inadequate staffing and culturally unsafe practices. The six themes identified in the data: 'very adhoc', 'swallowed by acute', 'going under', 'a flux', 'a huge barrier' and 'them and us' illustrate how these factors continue, and when combined portray a 'very chaotic system'. CONCLUSION: Service providers perceived service provision and quality to be inadequate, despite health system changes. Further work is urgently needed to improve the quality, cultural responsiveness and effectiveness of services to this population.

Improving Aboriginal maternal and infant health services in the 'Top End' of Australia; synthesis of the findings of a health services research program aimed at engaging stakeholders, developing research capacity and embedding change.

BACKGROUND: Health services research is a well-articulated research methodology and can be a powerful vehicle to implement sustainable health service reform. This paper presents a summary of a five-year collaborative program between stakeholders and researchers that led to sustainable improvements in the maternity services for remote-dwelling Aboriginal women and their infants in the Top End (TE) of Australia. METHODS: A mixed-methods health services research program of work was designed, using a participatory approach. The study area consisted of two large remote Aboriginal communities in the Top End of Australia and the hospital in the regional centre (RC) that provided birth and tertiary care for these communities. The stakeholders included consumers, midwives, doctors, nurses, Aboriginal Health Workers (AHW), managers, policy makers and support staff. Data were sourced from: hospital and health centre records; perinatal data sets and costing data sets; observations of maternal and infant health service delivery and parenting styles; formal and informal interviews with providers and women and focus groups. Studies examined: indicator sets that identify best care, the impact of quality of care and remoteness on health outcomes, discrepancies in the birth counts in a range of different data sets and ethnographic studies of 'out of hospital' or health centre birth and parenting. A new model of maternity care was introduced by the health service aiming to improve care following the findings of our research. Some of these improvements introduced during the five-year research program of research were evaluated. RESULTS: Cost effective improvements were made to the acceptability, quality and outcomes of maternity care. However, our synthesis identified system-wide problems that still account for poor quality of infant services, specifically, unacceptable standards of infant care and parent support, no apparent relationship between volume and acuity of presentations and staff numbers with the required skills for providing care for infants, and an 'outpatient' model of care. Services were also characterised by absent Aboriginal leadership and inadequate coordination between remote and tertiary services that is essential to improve quality of care and reduce 'system-introduced' risk. CONCLUSION: Evidence-informed redesign of maternity services and delivery of care has improved clinical effectiveness and quality for women. However, more work is needed to address substandard care provided for infants and their parents.

The Well-Being of Carers of Older Aboriginal People Living in the Kimberley Region of Remote Western Australia: Empowerment, Depression, and Carer Burden.

Objective: To describe demographic features and well-being of carers of Aboriginal Australians aged ≥45 years in remote Western Australia. Method: Carer burden, empowerment, and depression were assessed in 124 Aboriginal carers in four remote Aboriginal communities. Results: Carers were aged 38.8 ± 15.0 years, 73.4% were female, and 75.8% were children or grandchildren of the person cared for. The mean Zarit-6 score was 3.7 ± 3.6. Attending high school (odds ratio [OR] = 0.3; 95% confidence interval [CI] = [0.1, 0.7]) and feeling empowered (OR = 0.2; 95% CI = [0.1, 0.8]) were inversely associated with carer burden; female carers were less likely to feel empowered (OR = 0.4; 95% CI = [0.2, 0.9]); and empowerment was inversely associated with depression (OR = 0.3; 95% CI = [0.1, 0.7]). Discussion: Aboriginal carers in remote communities are relatively young and most are children or grandchildren. Carer burden was lower than anticipated. However, existing tools may not adequately measure Aboriginal perspectives. Education and empowerment are key factors which support programs must consider.

Remote links: Redesigning maternity care for Aboriginal women from remote communities in Northern Australia - A comparative cohort study.

OBJECTIVE: to compare the quality of care before and after the introduction of the new Midwifery Group Practice. DESIGN: a cohort study. SETTING: the health centers (HCs) in two of the largest remote Aboriginal communities (population 2200-2600) in the Top End of the Northern Territory (NT), each located approximately 500km from Darwin. The third study site was the Royal Darwin Hospital (RDH) which provides tertiary care. METHODS: a 2004-06 retrospective cohort (n=412 maternity cases) provided baseline data. A clinical redesign of maternity services occurring from 2009 onwards focused on increasing Continuity of Carer, Communication, Choice, Collaboration and Co-ordination of Care (5Cs). Data from a 2009-11 prospective cohort (n=310 maternity cases) were collected to evaluate the service redesign. Outcome measures included indicators on the quality of care delivery, adherence to recommended antenatal guidelines and maternal and neonatal health outcomes. FINDINGS: statistically significant improvements were recorded in many areas reflecting improved access to, and quality of, care. For example: fewer women had <4 visits in pregnancy (14% versus 8%), a higher proportion of women had routine antenatal tests recorded (86% versus 97%) and improved screening rates for urine (82% versus 87%) and sexual tract infections (78% versus 93%). However, the treatment of conditions according to recommended guidelines worsened significantly in some areas; for example antibiotics prescribed for urine infections (86% versus 52%) and treatment for anaemia in pregnancy (77% versus 67%). High preterm (21% versus 20%), low birth weight (18% versus 20%) and PPH (29% versus 31%) rates did not change over time. The out of hospital birth rate remained high and unchanged in both cohorts (10% versus 10%). CONCLUSION: this model addresses some of the disparities in care for remote-dwelling Aboriginal women. However, much work still needs to occur before maternity care and outcomes are equal to that of non-Aboriginal women. Targeted program interventions with stronger clinical governance frameworks to improve the quality of care are essential. A complete rethink of service delivery and engagement may deliver better results.

'No more strangers': Investigating the experiences of women, midwives and others during the establishment of a new model of maternity care for remote dwelling aboriginal women in northern Australia.

OBJECTIVE: to describe the experiences of women, midwives and others during the establishment of a new model of maternity care for remote dwelling Aboriginal women transferred to a regional centre in northern Australia for maternity care and birth. DESIGN: a mixed method design within a Participatory Action Research approach was used. Qualitative findings are presented here. Data for this paper were collected from semi-structured interviews, field notes and observations and analysed thematically. SETTING: the 'top end' of the Northern Territory of Australia. PARTICIPANTS: a total of 66 participants included six MGP midwives, two Aboriginal Health Workers and one Senior Aboriginal Woman working in the new model; eight hospital midwives; 34 Department of Health staff, three staff from other agencies; and 12 remote dwelling Aboriginal women who used the service. FINDINGS: the study generated one overarching theme, it's not a perfect system but it's changing. This encompassed improvements to the services evident to all participants. Core themes related to the previous maternity service which was described as the arduous journey, the new model was seen as a new way of working and a resultant very different journey occurred for Aboriginal women using the service. KEY CONCLUSIONS AND IMPLICATIONS FOR PRACTICE: there was a dissonance between the previous culture of maternity services and the woman centred focus of the new model. Over 12 months initial resistance to the new model diminished and it became highly valued. The transfer of information between the regional service and remote community health centres improved as did the safety and quality of care. Aboriginal women can access continuity of carer in the regional centre for the first time and reported a more positive experience with maternity services. The new model appears to have changed the cultural responsiveness of the regional maternity service; and care provided for remote dwelling women within this service. The qualitative findings inform others seeking to implement a similar model of care for remote dwelling women transferred to a regional centre for birth.