Delivering health programs for Aboriginal and Torres Strait Islander children: Carer and staff views on what's important.

BACKGROUND: The lack of evidence on the priorities of carers and their Aboriginal and Torres Strait Islander children undermines decisions to improve participant experiences and engagement. AIMS: This study describes carer and staff perspectives on the aspects of health services delivery that are important to carers and children. METHODS: Nineteen carers of Aboriginal and Torres Strait Islander children and 17 staff who work at child health programs across two urban Aboriginal Community Controlled Health Services (ACCHSs) and affiliate organisations in New South Wales, Australia participated in semi-structured interviews. We used thematic analysis to analyse the data. RESULTS: We identified five themes: valuing relational communication (building trust by keeping relationships at the centre, empowered to optimise child's development, feeling heard and known); confidence in provider's clinical and interpersonal skills (certain that the health issue will be resolved, engaging with the child to allay fears, facilitating timely health care); finding comfort and security in community embedded services (safety and acceptance in the familiar, strengthening child's connection to culture); support to access and navigate health services (accessible information appropriately presented, easy and flexible scheduling, easing the shame of financial hardship); sustaining service use (fulfilling expectations for service standards, demonstrating commitment through ongoing programs, clarity of benefits). CONCLUSIONS: Carers and staff reported that approaches to communication, the content of that communication, how access is facilitated and the service environment managed influences their decisions to interact with health services. With these data decision-makers can better focus resources to improve experiences with their services.

Stakeholder perspectives on the implementation and impact of Indigenous health interventions: A systematic review of qualitative studies.

BACKGROUND: Evaluations of health interventions for Indigenous peoples rarely report outcomes that reflect participant and community perspectives of their experiences. Inclusion of such data may provide a fuller picture of the impact of health programmes and improve the usefulness of evaluation assessments. AIM: To describe stakeholder perspectives and experiences of the implementation and impact of Indigenous health programmes. METHODS: We conducted a systematic review of qualitative studies evaluating complex health interventions designed for Indigenous communities in high-income countries. We searched 6 electronic databases (through to January 2020): MEDLINE, PreMEDLINE, Embase, PsycINFO, EconLit and CINAHL and hand-searched reference lists of relevant articles. RESULTS: From 28 studies involving 677 stakeholders (mostly clinical staff and participants), six main themes were identified: enabling engagement, regaining control of health, improving social health and belonging, preserving community and culture, cultivating hope for a better life, and threats to long-term programme viability. CONCLUSION: The prominence of social, emotional and spiritual well-being as important aspects of the health journey for participants in this review highlights the need to reframe evaluations of health programmes implemented in Indigenous communities away from assessments that focus on commonly used biomedical measures. Evaluators, in consultation with the community, should consistently assess the capacity of health professionals to meet community needs and expectations throughout the life of the programme. Evaluations that include qualitative data on participant and community-level outcomes can improve decision-makers' understanding of the impact that health programmes have on communities. PATIENT OR PUBLIC CONTRIBUTION: This paper is a review of evaluation studies and did not involve patients or the public.

Developmental risk among Aboriginal children living in urban areas in Australia: the Study of Environment on Aboriginal Resilience and Child Health (SEARCH).

BACKGROUND: Most Australian Aboriginal children are on track with their development, however, the prevalence of children at risk of or with a developmental or behavioural problem is higher than in other children. Aboriginal child development data mostly comes from remote communities, whereas most Aboriginal children live in urban settings. We quantified the proportion of participating children at moderate and high developmental risk as identified by caregivers' concerns, and determined the factors associated with developmental risk among urban Aboriginal communities. METHODS: Study methods were co-designed and implemented with four participating urban Aboriginal Community Controlled Health Services in New South Wales, Australia, between 2008 and 2012. Caregiver-reported data on children < 8 years old enrolled in a longitudinal cohort study (Study of Environment on Aboriginal Resilience and Child Health: SEARCH) were collected by interview. The Parents' Evaluation of Developmental Status (PEDS) was used to assess developmental risk through report of caregiver concerns. Odds ratios (OR) were calculated using multinomial logistic regression to investigate risk factors and develop a risk prediction model. RESULTS: Of 725 children in SEARCH with PEDS data (69% of eligible), 405 (56%) were male, and 336 (46%) were aged between 4.5 and 8 years. Using PEDS, 32% were at high, 28% moderate, and 40% low/no developmental risk. Compared with low/no risk, factors associated with high developmental risk in a mutually-adjusted model, with additional adjustment for study site, were male sex (OR 2.42, 95% confidence intervals 1.62-3.61), being older (4.5 to < 8 years versus < 3 years old, 3.80, 2.21-6.54), prior history of ear infection (1.95, 1.21-3.15), having lived in 4 or more houses versus one house (4.13, 2.04-8.35), foster care versus living with a parent (5.45, 2.32-12.78), and having a caregiver with psychological distress (2.40, 1.37-4.20). CONCLUSION: In SEARCH, 40% of urban Aboriginal children younger than 8 years were at no or low developmental risk. Several factors associated with higher developmental risk were modifiable. Aboriginal community-driven programs to improve detection of developmental problems and facilitate early intervention are needed.

Agreement between diagnoses of otitis media by audiologists and otolaryngologists in Aboriginal Australian children.

OBJECTIVES: To determine the degree of agreement of diagnoses by audiologists and otolaryngologists of otitis media (OM) in Aboriginal children. DESIGN: Cross-sectional study of agreement between diagnoses. SETTING: Study of Environment on Aboriginal Resilience and Child Health (SEARCH), a prospective cohort study of Aboriginal children attending four Aboriginal Community Controlled Health Services in New South Wales (three metropolitan, one regional) during 2008-2012. PARTICIPANTS: 1310 of 1669 SEARCH participants (78.5%; mean age, 7.0 years; SD, 4.4 years) were assessed and received a diagnosis from one of five experienced audiologists. Test results (but not case histories) were forwarded to one of three otolaryngologists for blinded independent assessment. MAIN OUTCOME MEASURES: Agreement of OM diagnoses by audiologists and otolaryngologists at ear and child levels; correctness of audiologist diagnoses (otolaryngologist diagnosis as reference). RESULTS: Paired diagnoses by audiologists and otolaryngologists were available for 863 children at the child level and 1775 ears (989 children) at the ear level. Otolaryngologists diagnosed OM in 251 children (29.1%), including 11 (1.3%) with tympanic membrane perforation, and in 396 ears (22.3%), including 12 (0.7%) with perforation. Agreement between audiologists and otolaryngologists for OM at the ear level was 92.2% (κ = 0.78; 95% CI, 0.74-0.82), and at the child level 91.7% (κ = 0.81; 95% CI, 0.77-0.85). No otolaryngologist-diagnosed perforation was missed by audiologists. Among 1000 children triaged by an audiologist, there would be 45 false positives and 30 false negatives when compared with assessments by an otolaryngologist, with no missed perforations. CONCLUSIONS: There was substantial agreement between audiologists' and otolaryngologists' diagnoses of OM in a high prevalence population of Aboriginal children. In settings with limited access to otolaryngologists, audiologists may appropriately triage children and select those requiring specialist review.

Parental views on otitis media: systematic review of qualitative studies.

UNLABELLED: This study aims to describe parental experiences and perspectives of caring for a child with otitis media. We conducted a systematic review of qualitative studies on parental perspectives on caring for a child with otitis media. We searched electronic databases to July 2015. Seventeen studies involving 284 participants from six countries were included. We identified seven themes: diminishing competency (guilt over failure to identify symptoms, helpless and despairing, fear of complications, disempowered and dismissed); disrupting life schedules (disturbing sleep, interfering with work, burden on family); social isolation (stigma and judgement, sick consciousness); threatening normal development (delaying growth milestones, impairing interpersonal skills, impeding education); taking ownership (recognising symptoms, diagnostic closure, working the system, protecting against physical trauma, contingency planning); valuing support (needing respite, depending on community, clinician validation); and cherishing health (relief with treatment success, inspiring resilience). CONCLUSION: The additional medical responsibilities and anxieties of parents caring for a child with otitis media, often discounted by clinicians, can be disempowering and disruptive. Chronicity can raise doubt about treatment efficacy and parental competency, and fears regarding their child's development. Care that fosters parental confidence and addresses their concerns about the child's development may improve treatment outcomes for children with otitis media. WHAT IS KNOWN: • Otitis media is a leading cause of conductive hearing loss in children. • Parental perception of the treatment burden of otitis media can potentially affect their confidence and ability to care for their child. What is New: • We identified five themes to reflect parental perspectives: diminishing competency, disrupting life schedules, social isolation, threatening normal development, taking ownership, valuing support, and cherishing health. • Parents may perceive caring for a child with otitis media as disempowering and disruptive and with reoccurrence doubt treatment efficacy and their parental competency and develop fears regarding their child's development.

Research priority setting in kidney disease: a systematic review.

BACKGROUND: Resources for research are insufficient to cover all unanswered questions, and therefore difficult choices about allocation must be made. Recently there has been a move toward more patient-centered research. This study aims to evaluate approaches to research prioritization in kidney disease and describe research priorities of patients with kidney disease, their caregivers, the health care providers involved in their care, and policy makers. STUDY DESIGN: Systematic review. SETTING & POPULATION: Studies that elicited patient, caregiver, health care provider, or policy maker priorities for research in kidney disease were included. SEARCH STRATEGY & SOURCES: MEDLINE, EMBASE, PsycINFO, and CINAHL were searched to May 2014. ANALYTICAL APPROACH: Descriptive synthesis. RESULTS: We identified 16 studies (n=2,365 participants) conducted in the United States, the Netherlands, Australia, Canada, and internationally. Only 4 (25%) studies explicitly involved patients. Various priority-setting methods were used, including the Delphi technique, expert panels, consensus conference, ranking or voting surveys, focus groups, and interviews, of which the process was described in detail by 11 (69%) studies. The priority areas for research most frequently identified across studies were prevention of acute kidney injury, prevention of chronic kidney disease progression, fluid and diet restrictions, improving vascular access, kidney transplant survival, access to transplantation, patient education, and psychosocial impact of chronic kidney disease. LIMITATIONS: Most studies were conducted in high-income countries. CONCLUSIONS: The priorities identified by kidney disease research priority-setting exercises are broad ranging, but patient involvement is uncommon and the processes often are incompletely described. Establishing research priorities using a prespecified and transparent process that engages patients, caregivers, and health care providers is needed to ensure that resources are invested to answer questions that address the shared priorities in kidney disease.

Research Priorities in CKD: Report of a National Workshop Conducted in Australia.

Research aims to improve health outcomes for patients. However, the setting of research priorities is usually performed by clinicians, academics, and funders, with little involvement of patients or caregivers and using processes that lack transparency. A national workshop was convened in Australia to generate and prioritize research questions in chronic kidney disease (CKD) among diverse stakeholder groups. Patients with CKD (n=23), nephrologists/surgeons (n=16), nurses (n=8), caregivers (n=7), and allied health professionals and researchers (n=4) generated and voted on intervention questions across 4 treatment categories: CKD stages 1 to 5 (non-dialysis dependent), peritoneal dialysis, hemodialysis, and kidney transplantation. The 5 highest ranking questions (in descending order) were as follows: How effective are lifestyle programs for preventing deteriorating kidney function in early CKD? What strategies will improve family consent for deceased donor kidney donation, taking different cultural groups into account? What interventions can improve long-term post-transplant outcomes? What are effective interventions for post hemodialysis fatigue? How can we improve and individualize drug therapy to control post-transplant side effects? Priority questions were focused on prevention, lifestyle, quality of life, and long-term impact. These prioritized research questions can inform funding agencies, patient/consumer organizations, policy makers, and researchers in developing a CKD research agenda that is relevant to key stakeholders.

Parental experiences with a hospital-based bead programme for children with congenital heart disease.

AIMS AND OBJECTIVES: To present survey findings on parental experiences with a hospital-based bead programme for children with congenital heart disease. BACKGROUND: The Heart Beads programme commenced at a paediatric hospital in Australia in 2008. Children enrolled in the programme are awarded a distinctive bead for every procedure/treatment they have while in hospital. A previous evaluation study on the programme revealed that the beads are therapeutic for the child and parents; however, due to a small sample size, the results were representative of the experiences of a small number of families who participated in the programme. DESIGN: This was an evaluation study which employed a nonexperimental descriptive design. METHODS: Surveys were mailed to all eligible families who enrolled in the programme. Data collection occurred between July-December 2012. Questions on parental experiences with the Heart Beads programme were divided into three categories: understanding, acknowledgement and quality. Descriptive statistics were obtained and analysed. RESULTS/FINDINGS: One hundred and sixty-two mothers and 136 fathers responded to the survey. Heart Beads assisted mothers (83%) and fathers (80%) with understanding their child's condition and helped them with communication (mothers 80%, fathers 58%). The majority of fathers felt that their experience was acknowledged by nursing staff (64%) and medical staff (62%), while mothers indicated a higher response from nurses (76%) compared to medical staff (67%). Overall, parents rated the programme positively; however, there was some concern that children at times missed out on beads. CONCLUSION: Understanding how mothers and fathers experience the programme differently can guide staff in their communication with parents and inform future initiatives. RELEVANCE TO CLINICAL PRACTICE: The Heart Beads help nurses understand how parents are experiencing care and ways in which they can provide support and acknowledgement of the parent's experience.

Effects of socioeconomic status and health care access on low levels of human papillomavirus vaccination among Spanish-speaking Hispanics in California.

Little is known about the effect of language preference, socioeconomic status, and health care access on human papillomavirus (HPV) vaccination. We examined these factors in Hispanic parents of daughters aged 11 to 17 years in California (n = 1090). Spanish-speaking parents were less likely to have their daughters vaccinated than were English speakers (odds ratio [OR] = 0.55; 95% confidence interval [CI] = 0.31, 0.98). Adding income and access to multivariate analyses made language nonsignificant (OR = 0.68; 95% CI = 0.35, 1.29). This confirms that health care use is associated with language via income and access. Low-income Hispanics, who lack access, need information about free HPV vaccination programs.

Decisional involvement in Magnet®, magnet-aspiring, and non-magnet hospitals.

BACKGROUND: Empowered decision making can help establish innovative work cultures. OJECTIVE: This study used the Decisional Involvement Scale to determine differences in actual and preferred decisional involvement among staff RNs and administrators in Magnet®, Magnet-aspiring, and non-Magnet hospitals. METHODS: : Two facilities were Magnet designated, 3 were Magnet aspiring, and 9 were non-Magnet. A total of 5000 staff RNs and administrators were asked to participate in the nonexperimental descriptive survey. RESUTS: The difference observed in actual global scale score by Magnet status was statistically significant (P = .01). Respondents in Magnet hospitals had the highest actual global scale score on average, followed by Magnet-aspiring, then non-Magnet. CONCLUSIONS: Decisional involvement is higher among Magnet-designated than non-Magnet facilities.

Outcomes reported in evaluations of programs designed to improve health in Indigenous people.

OBJECTIVE: To assess the outcomes reported and measured in evaluations of complex health interventions in Indigenous communities. DATA SOURCES: We searched all publications indexed in MEDLINE, PreMEDLINE, EMBASE, PsycINFO, EconLit, and CINAHL until January 2020 and reference lists from included papers were hand-searched for additional articles. STUDY DESIGN: Systematic review. DATA COLLECTION/EXTRACTION METHODS: We included all primary studies, published in peer-reviewed journals, where the main objective was to evaluate a complex health intervention developed specifically for an Indigenous community residing in a high-income country. Only studies published in English were included. Quantitative and qualitative data were extracted and summarized. PRINCIPAL FINDINGS: Of the 3523 publications retrieved, 62 evaluation studies were included from Australia, the United States, Canada, and New Zealand. Most studies involved less than 100 participants and were mainly adults. We identified outcomes across 13 domains: clinical, behavioral, process-related, economic, quality of life, knowledge/awareness, social, empowerment, access, environmental, attitude, trust, and community. Evaluations using quantitative methods primarily measured outcomes from the clinical and behavioral domains, while the outcomes reported in the qualitative studies were mostly from the process-related and empowerment domains. CONCLUSION: The outcomes from qualitative evaluations, which better reflect the impact of the intervention on participant health, remain different from the outcomes routinely measured in quantitative evaluations. Measuring the outcomes from qualitative evaluations alongside outcomes from quantitative evaluations could result in more relevant evaluations to inform decision making in Indigenous health.