IRB challenges in multisite studies: A case report and commentary from the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing (IDS-TILDA).

A shift from single to multi-site health studies enabled a range of research benefits including faster recruitment of larger and more diverse samples; increased statistical power, greater rigour, generalisability, and external reliability; and increased likelihood of impacting policy and clinical practice. However, ethical review of multi-site studies by Institutional Review Boards (IRBs) raises specific challenges compared with single site studies, with requirements to apply to multiple local IRBs increasing the burden on research, possibly endangering the integrity of the research process or inhibiting development of multi-site studies. The option of a single centralised IRB may offer a clearer, more consistent and efficient review process. This study presents a case report and commentary from 15 years engaging with IRBs in multiple sites in Ireland by the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing (IDS-TILDA). It examines the ethics review process for IDS-TILDA through its first four waves. While the majority of 48 IRBs granted ethical approval within 13 weeks, six IRBs took 21-47 weeks to approve, leading to delays in data collection of up to 11 months. Despite additional review time, no changes were required to the study protocol. Therefore, a critical impact of the process was the delay in starting data collection within a small number of organisations, and reduced involvement in the study for one organisation. The ethical review process with multiple IRBs increased the degree of complexity of the process, with added bureaucracy and far greater communication required across 48 IRBs, substantially adding to the resource commitment for the review process. The relatively quick approval from the majority of IRBs was partially a result of the longitudinal study building relationships with organisations throughout multiple waves. That other health studies may not accrue this benefit supports calls for a single IRB system for multi-site health studies.

Recruitment and retention in longitudinal studies of people with intellectual disability: A case study of the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing (IDS-TILDA).

BACKGROUND: Longitudinal study of people with intellectual disability and other difficult to reach populations requires specific recruitment and retention strategies to be successful. AIMS: This paper provides a case study of participant recruitment and retention for a longitudinal study of ageing among older adults with intellectual disability in Ireland. METHODS AND PROCEDURES: Development and implementation of strategies to recruit and retain participants with intellectual disability aged 40+ years, for a longitudinal study comprising four data collection waves over more than a decade, are reported. Recruitment and retention outcomes are assessed alongside factors of successful implementation. OUTCOMES AND RESULTS: A nationally representative sample of 753 individuals with intellectual disability was recruited for wave 1 of the study. Multiple retention strategies aimed to reduce barriers to participation and create a project community and study bond, underpinned by a Values Framework and commitment to PPI. After four waves over 11 years, 87.1 % of surviving participants were retained. CONCLUSIONS AND IMPLICATIONS: Successful recruitment and retention of people with intellectual disabilities in longitudinal studies is possible when the approach taken is personal, flexible, and innovative; participant burden is minimised; the research team is skilled and sensitive to needs of participants; and where involvement of the study population guides development and implementation of specific and bespoke strategies.

The impact of COVID-19 on people ageing with an intellectual disability in Ireland: Protocol for a follow-up survey.

Background:  The COVID-19 pandemic and associated lockdowns have had a dramatic impact on many people, but individuals with an intellectual disability, given the prevalence of congregate living and high levels of co-morbid conditions, may be particularly vulnerable at this time. A prior initial survey of participants of the Intellectual Disability Supplement to the Irish Longitudinal Study on Ageing (IDS-TILDA) found that, despite a majority of participants being tested, only a small proportion had tested positive for COVID-19. Furthermore, despite some reporting positive aspects to the lockdown, a similar proportion were experiencing stress or anxiety during the pandemic. The pandemic and lockdowns have continued, and it is possible that experiences and consequences have changed over time. Aim: To explore over time and in greater depth the impact of COVID-19 and associated lockdowns and to further establish rates of infection, rates of vaccination and participants' experiences. Methods: A structured questionnaire for people with intellectual disability participating in the IDS-TILDA longitudinal study, to be administered by telephone/video in summer 2021. Where participants are unable to respond independently, a proxy respondent will be invited to either assist the participant or answer questions on their behalf. This questionnaire will include questions from the first COVID-19 questionnaire, with extra questions assessing "long COVID" (i.e. COVID-19 lasting for 12 weeks or longer), infection control behaviours, changes in mental health, social contacts and loneliness, frailty, healthcare, and incidence of vaccination. Impact: The results of this survey will be used to inform healthcare provision for people with intellectual disability during the latter stages of the lockdown and into the future.

Cancer support services: Are they meeting the needs of rural radiotherapy patients?

This paper examines the supportive care in place to meet the needs of patients receiving radiotherapy at a regional oncology service in Bunbury, Western Australia. Semi-structured in-depth interviews with 21 service providers and 17 adults diagnosed with cancer who underwent radiotherapy at the Service were recorded, transcribed and analysed thematically. Key themes relevant were co-operation and collaboration of interdisciplinary team members; support from organisations to assist with accommodation, transport, emotional support and provision of practical assistance, as well as barriers to accessing support. Most participants were positive about the support available, recognising the needs of rural radiotherapy patients for assistance with travel, accommodation and psychosocial support to help deal with the stressors they face. Collaboration between the various service providers maximised the support available to patients but the drop off in psychosocial support once the intensity of treatment was completed was identified as a weakness in the support available. The support system, established around a regional radiotherapy service, was enhanced by the collaborative professional relationships developed among service providers. The service extends beyond clinical service delivery by recognising financial, logistical and psychosocial support needs, factors to be considered to ensure rural radiotherapy patients are provided with holistic care.

Australian cancer services: a survey of providers' efforts to meet the needs of Indigenous patients.

OBJECTIVE: To examine where Indigenous Australians undergo cancer treatment and learn about specific service initiatives that have been implemented to meet their needs. METHODS: Public cancer treatment centres across Australia were invited to participate in an online survey about various characteristics of their centre, including the type of service provided, Indigenous patient numbers and policy, and implementation of Indigenous-specific initiatives. RESULTS: Surveys were completed for 58 of 125 public cancer treatment centres. Almost half (47%) of the services saw more than 10 Indigenous patients per year, although Indigenous patients generally represented a small minority of patients. The most commonly reported initiatives were "having links with Indigenous health organisations in the community" (74% of services), "making a dedicated effort to address the needs of Indigenous patients" (69%) and proactively "creating partnerships with Indigenous communities and health organisations" (69%). CONCLUSIONS: The majority of respondents indicated that they were working to meet the needs of Indigenous patients and were interested in learning strategies from others to improve their services. More work is needed to describe and evaluate the specific initiatives that have been implemented. Implications for public health: Information from this study can assist cancer service providers to identify gaps in current services, plan new service delivery initiatives and ultimately improve Indigenous cancer outcomes.

Factors Affecting the Retention of Indigenous Australians in the Health Workforce: A Systematic Review.

Indigenous Australians are under-represented in the health workforce. The shortfall in the Indigenous health workforce compounds the health disparities experienced by Indigenous Australians and places pressure on Indigenous health professionals. This systematic review aims to identify enablers and barriers to the retention of Indigenous Australians within the health workforce and to describe strategies to assist with development and retention of Indigenous health professionals after qualification. Four electronic databases were systematically searched in August 2017. Supplementary searches of relevant websites were also undertaken. Articles were screened for inclusion using pre-defined criteria and assessed for quality using the Mixed Methods Assessment Tool. Fifteen articles met the criteria for inclusion. Important factors affecting the retention of Indigenous health professionals included work environment, heavy workloads, poorly documented/understood roles and responsibilities, low salary and a perception of salary disparity, and the influence of community as both a strong personal motivator and source of stress when work/life boundaries could not be maintained. Evidence suggests that retention of Indigenous health professionals will be improved through building supportive and culturally safe workplaces; clearly documenting and communicating roles, scope of practice and responsibilities; and ensuring that employees are appropriately supported and remunerated. The absence of intervention studies highlights the need for deliberative interventions that rigorously evaluate all aspects of implementation of relevant workforce, health service policy, and practice change.

Cancer Services and Their Initiatives to Improve the Care of Indigenous Australians.

Indigenous Australians continue to experience significantly poorer outcomes from cancer than non-Indigenous Australians. Despite the importance of culturally appropriate cancer services in improving outcomes, there is a lack of awareness of current programs and initiatives that are aimed at meeting the needs of Indigenous patients. Telephone interviews were used to identify and describe the Indigenous-specific programs and initiatives that are implemented in a subset of the services that participated in a larger national online survey of cancer treatment services. Fourteen services located across Australia participated in the interviews. Participants identified a number of factors that were seen as critical to delivering culturally appropriate treatment and support, including having a trained workforce with effective cross-cultural communication skills, providing best practice care, and improving the knowledge, attitudes, and understanding of cancer by Indigenous people. However, over a third of participants were not sure how their service compared with others, indicating that they were not aware of how other services are doing in this field. There are currently many Indigenous-specific programs and initiatives that are aimed at providing culturally appropriate treatment and supporting Indigenous people affected by cancer across Australia. However, details of these initiatives are not widely known and barriers to information sharing exist. Further research in this area is needed to evaluate programs and initiatives and showcase the effective approaches to Indigenous cancer care.

Exploring treatment decision-making in cancer management for rural residents: Patient and provider perspectives on a recently established regional radiotherapy service.

AIM: The aim of this study was to examine stakeholders' views of how the establishment of the South West Radiation Oncology Service in Bunbury, Western Australia, has affected treatment decision-making, and the extent to which patients are involved in the decision-making process. METHODS: Semi-structured in-depth interviews were undertaken with 21 service providers involved in the treatment and care of people with cancer, and 17 adults diagnosed with cancer who opted to undergo radiotherapy (RT) treatment at the Service. Data were subject to thematic analysis using the qualitative data analysis software NVivo 10. RESULTS: Patients were overwhelmingly positive about their experiences at the Service, praising the quality of the care provided and noting the convenience associated with receiving treatment locally. Most patients reported feeling involved in decision-making, but tended to rely on and generally adopt advice from medical professionals regarding type and location of treatment. Although service providers in the region had become more aware of the regional RT service and referrals had increased, some patients continued to travel to the metropolitan area for treatment. Reasons identified for this included the need for more specialized RT treatment and the more extensive range of allied health services offered. CONCLUSION: Increased convenience and a lower financial burden are key reasons why rural cancer patients prefer treatment at a regional RT service rather than travelling to metropolitan centers. These factors highlight the need for ongoing improvement in access to local RT services so that disparities in cancer outcomes between rural and metropolitan patients are reduced.

An Exploration of Underrepresentation of Aboriginal Cancer Patients Attending a Regional Radiotherapy Service in Western Australia.

Travel logistics impede Aboriginal patients' uptake of cancer treatments and is one reason for the poorer outcomes of Aboriginal people with cancer. This research examined benefits of a newly established rurally based radiotherapy unit in southwest Western Australia (WA), and included exploring the experience of Aboriginal patients and possible reasons for Aboriginal people's underrepresentation in treatment. Semi-structured in-depth interviews with 21 service providers involved in the treatment and care of people with cancer, and 3 Aboriginal patients with cancer who undertook radiotherapy at the Service were undertaken. Data were subject to thematic analysis involving immersion in the data for familiarization, inductive coding, investigator discussion and refining of emerging themes and triangulation of patient and provider interviews. Aboriginal cancer patients were positive about the treatment and support they had received, highlighting the often complex challenges faced by rural Aboriginal cancer patients in accessing and maintaining treatment. Service providers offered suggestions for small numbers presenting to the Service, including late presentation, potential perceptions of cultural insensitivity on the part of service providers, out-of-pocket costs and under-ascertainment of Aboriginal status. The Service has put in place practices and initiatives to support patient health and wellbeing, including making the facility more welcoming towards Aboriginal people and ensuring culturally appropriate care.

Perspectives of Aboriginal women on participation in mammographic screening: a step towards improving services.

BACKGROUND: Early detection of breast cancer using screening mammography provides an opportunity for treatment which can lead to significantly improved outcomes. Despite considerable efforts having been made, the rate at which Aboriginal and Torres Strait Islander (hereafter respectfully referred to as Aboriginal) women in Western Australia participate in BreastScreen WA's screening mammogram program remains below that for the overall female population of Western Australia. This study aimed to examine perspectives on breast screening amongst Aboriginal women in Western Australia. We explored the factors which impact on participation in breast screening and sought to identify potential initiatives to address lower participation in screening. METHODS: Semi-structured interviews, focus group discussions and yarning sessions were conducted with a total of 65 research participants. They were all Aboriginal and comprised consumers and health professionals from locations across the state. RESULTS: Our findings show that research participants generally were willing to have a mammogram. Key reasons given were having a genetic predisposition to breast cancer and a perception of investing in health for the sake of the next generation, as well as personal well-being. Barriers identified included lack of education about or understanding of screening, inadequacies in cultural appropriateness in the screening program, cultural beliefs around cancer in general and breast cancer in particular, and competing health and life priorities. However, many enablers were identified which can serve as potential strategies to assuage fear and increase screening uptake. These included increased education delivered by respected Aboriginal women, culturally appropriate promotion and the provision of care and support from other women in the community. CONCLUSION: The higher participation rates for Aboriginal women in Western Australia than are found for Aboriginal women nationally demonstrate the success of the strategies put in place by BreastScreen WA. These efforts must be supported and existing policies and practices enhanced to address the limitations in the existing program. Only by implementing and evaluating such initiatives and making breast screening programs more accessible to Aboriginal women can the current disparity between the screening participation rates of Aboriginal and non-Aboriginal women be reduced.

Talking about the not talked about: use of, and reactions to, a DVD promoting bowel cancer screening to Aboriginal people.

OBJECTIVE: To examine a) the implementation and use of a DVD developed to educate Aboriginal people about bowel cancer and bowel cancer screening; and b) broader aspects of Aboriginal participation in the National Bowel Cancer Screening Program. METHODS: Qualitative methods and descriptive approaches were used. Data were collected using face-to-face and telephone interviews and focus group discussions. There were 67 participants, including those involved in the development and distribution of the DVD, health professionals and Aboriginal community members. RESULTS: Although the DVD received a positive reaction from participants, fewer than half the DVDs had been distributed. Furthermore, the small number of DVDs that had been distributed were under-utilised. CONCLUSION: The weaknesses do not appear to lie with the resource itself but can be attributed partly to poor distribution and promotion. This may have been compounded by the structure of the National Bowel Cancer Screening Program, which limited the engagement of Aboriginal community members and health providers whose focus is largely directed towards more pressing health care issues. IMPLICATIONS: Interest in the resource may increase once the Aboriginal component of the screening program is more closely linked with primary care.

The male of the species: a profile of men in nursing.

AIM: To establish a profile of men in nursing in Western Australia and explore the perception of men in nursing from the perspective of male and female nurses. BACKGROUND: A project team, including some of the current authors, produced a YouTube video and DVD about men in nursing which led to further enquiry on this topic. DESIGN: The study employed a non-experimental, comparative, descriptive research design focused on a quantitative methodology, using an online survey in early 2014. METHOD: A convenience sample incorporated registered and enrolled nurses and midwives in Western Australia. FINDINGS: The range of data included demographic information and the respondents' perceptions of men in nursing were collected. Findings indicated that the main reasons for choosing a career in nursing or midwifery were similar for both genders. Common mis-perceptions of men in nursing included: most male nurses are gay; men are not suited to nursing and men are less caring and compassionate than women. Suggestions to promote nursing to men included: nurses are highly skilled professionals; there is the potential to make a difference for patients; nursing offers stable employment, professional diversity and opportunities for team work. There is a diminished awareness of opportunities for men in nursing and negative stereotypes related to men in nursing persist. CONCLUSION: The study produced recommendations which included: using the right message to target the recruitment for men and promoting a more realistic understanding of the profile and perception of men in nursing.

What role can the rural pipeline play in the recruitment and retention of rural allied health professionals?

CONTEXT: People living in rural areas have poorer health than their urban counterparts with higher morbidity and mortality rates and lower life expectancy. Challenges attracting health professionals to work in rural locations in Australia and elsewhere have been well- documented. In response, the idea of a rural pipeline emerged in the medical literature as a career pathway for doctors, conceptualised as a career continuum starting at school and ending in a committed, appropriately trained and supported rural doctor. This article draws on the literature to consider how the concept of a rural pipeline can be used to enhance recruitment and retention of allied health professionals (AHPs) in Australia. The complexity of the issue is taken into account, acknowledging the diverse professional, organisational and social needs within and between AHPs and their different career pathways. With this in mind, the rural pipeline is adapted and extended to focus on AHPs who enter at any stage of their career to work in rural areas. ISSUES: Barriers to recruitment and retention require multifaceted strategies to encourage and support AHPs at various stages along the pipeline to enter, and remain in, rural practice. Findings from the literature identify discrete themes within and between AHPs about factors influencing their rural recruitment and retention choices and include career stage at entry to rural practice, age, gender, social context, professional support, organisational environment and public-private practice mix in service delivery. These findings underscored the development of an extended rural pipeline adapted to specifically target AHPs. This flexible framework of entry to rural practice can be applied at any stage of their career and includes suggestions of strategies to support retention. LESSONS LEARNED: Evidence from studies of rural AHPs suggests a flexible approach to recruitment and retention is needed that takes into account the complexity of the issue. The extended rural pipeline adapted to AHPs avoids a one-size-fits-all approach. Instead, it offers a more nuanced approach that addresses the diversity within and between professions and reflects the different stages at which AHPs enter rural practice that can inform recruitment and retention strategies that better meet their needs.