Adaptive interviewing for the inclusion of people with intellectual disability in qualitative research.

BACKGROUND: Historically the voices of people with intellectual disability have been occluded by barriers imposed by research practice. More recently, adaptive research approaches have been proposed to enhance the inclusion of people with intellectual disability in qualitative research. METHOD: This article presents an adaptive interviewing approach employed with five people ageing with intellectual disabilities in rural South Australia. The interviews were conducted within a broader participatory action research project in which tools and resources were co-designed for post-parental care planning. RESULTS: We describe our adaptive interviewing approach incorporating multiple methods: (i) responsive communication techniques; (ii) the inclusion and support of family carers; (iii) visual tools; (iv) walking interviews. CONCLUSION: Findings contribute knowledge about how an adaptive interview approach supports the participation of people with an intellectual disability in qualitative research.

A systematic review of the direct and indirect COVID-19's impact on food security and its dimensions: pre-and post-comparative analysis.

BACKGROUND: Since its emergence, the COVID-19 pandemic has compromised the food security both directly by impacting food supply chain and indirectly by overwhelming the individual health and/or personal financial situation. The overarching aim of the current study is to assess aspects of the food security crisis that have arisen due to COVID-19 and to identify which, if any, food security dimensions were specifically compromised. METHODS: Primary research articles were initially identified through four online databases (Scopus, PubMed, Google Scholar, and Web of Science), with the references of each paper then also reviewed for additional article. The food security status of individuals and the wider community, both before and after the emergence of COVID-19, were examined. RESULTS: Of the 2,057 studies initially identified, a total of ten were included in the final review. The included studies confirmed that COVID-19 had substantially impacted food security, with individuals, households and the wider community experiencing food insecurity. Nine of the included studies aruged that the food accessibility dimension was the most compromised. CONCLUSION: To address the identified direct and indirect food security issues associated with COVID-19, it is proposed that a combination of prevention practices and proactive food security activities is required. Integrating food security interventions, supporting and facilitating food security resilience, and conducting further studies on the food security of COVID-19 are also recommended.

Clinical pharmacists' perspective of medication adherence support in Ethiopian hospital settings: a qualitative study.

BACKGROUND: Hospital pharmacists can assist patients with medication adherence in a hospital setting. No studies have explored the views of hospital pharmacists on medication adherence. OBJECTIVES: The study aimed to explore Ethiopian clinical pharmacists' understanding of and experience with medication adherence, and identify strategies for medication adherence support. METHODS: Semi-structured interviews were conducted via ZOOM/Skype. Hospital pharmacists were recruited through a professional network and snowball sampling. All interviews were audio recorded, transcribed verbatim, translated into English and analysed using thematic analysis techniques. The data coding followed a hybrid deductive and inductive approach. KEY FINDINGS: Fourteen Ethiopian clinical pharmacists participated in the study. Analysis yielded five main themes including: medication adherence definition and measurement; pharmacists' perceived roles; enablers of medication adherence; barriers to medication adherence; and ways forward. Participants indicated that accurately assessing medication adherence was complicated because of an absence of cost-effective and validated tools. Pharmacist education, clinical pharmacy services, physical structure, sources of medication information, and government initiatives to reduce financial burdens were the facilitators identified. Eight barriers were identified, and these were broadly classified as factors intrinsic or extrinsic to the patient. CONCLUSIONS: Medication adherence support could face barriers intrinsic or extrinsic to patients. Strategies were proposed to overcome the identified barriers and to harness existing facilitators. These strategies included the need for validated local language medication adherence tools, instituting regular adherence measurement and prioritizing patients for available interventions. Patient's preferred dosage form should be considered along with medication complexity and medication knowledge when supporting medication adherence.

Disability-adjusted life years (DALYs) based COVID-19 health impact assessment: a systematic review.

BACKGROUND: The emergence of COVID-19 has resulted in health, socio-economic, and political crises. The overall health impact of this disease can be measured by disability-adjusted life years (DALYs) which is the sum of the life years lost due to disability (YLDs) and the years life lost due to premature death (YLLs). The overarching objective of this systematic review was to identify the health burdens of COVID-19 and summarise the literature that can aid health regulators to make evidence-based decisions on COVID-19 mitigation strategies. METHODS: This systematic review was conducted using the PRISMA 2020 guidelines. DALYs-based primary studies were collected from databases, manual searches, and included studies' references. The primary studies published in English language, conducted since the emergence of COVID-19, and using DALYs or its subsets (years life lost due to disability and/or years life lost due to premature death) as health impact metrics, were the inclusion criteria. The combined disability and mortality health impact of COVID-19 was measured in DALYs. The risk of bias due to literature selection, identification, and reporting processes was assessed using the Joanna Bridges Institute critical appraisal tool for cross-sectional studies, and the certainty of evidence was assessed using the GRADE Pro tool. RESULT: Of the 1459 identified studies, twelve of them were eligible for inclusion in the review. The years life lost due to COVID-19 related mortality was dominant over the years life lost due to COVID-19 related disability (disability times from the onset of COVID-19 to recovery, from diseases occurrence to mortality, and the long-term consequences of COVID-19) in all included studies. The long-term consequence disability time and the pre-death disability time were not assessed by most of the reviewed articles. CONCLUSION: The impact of COVID-19 on both the length and quality of life has been substantial and has been causing considerable health crises worldwide. The health burden of COVID-19 was greater than other infectious diseases. Further studies focussing on issues examining increasing preparedness for future pandemics, public sensitization, and multi-sectorial integration are recommended.

Perceived health and wellbeing among community-dwelling older Australians with intellectual disability: A comparison with age peers.

Data specifically comparing outcomes for people with and without intellectual disability is limited. This paper reports perceived health and wellbeing of older Australians resident in metropolitan and rural locations in New South Wales and Queensland. Respondents were community-residing individuals with intellectual disability and mainstream age peers [age ≥ 60]. Measures included SF12; Cummings well-being scales; DSSI; Adverse Life Events; and financial hardship status. The sample was composed of 391 adults with intellectual disability and 920 age peers. Adults with intellectual disability were significantly more likely to note adverse life events, worse mental health, and lower levels of social support, but reported higher mean wellbeing scores and had higher scores for physical health. Results indicated higher likelihood of adults with intellectual disability reporting comparative disadvantage across multiple key areas when compared to age peers.

Measurement Properties of Patient-Reported Outcome Measures for Medication Adherence in Cardiovascular Disease: A COSMIN Systematic Review.

BACKGROUND AND OBJECTIVE: Several medication adherence patient-reported outcome measures (MA-PROMs) are available for use in patients with cardiovascular disease (CVD); however, little evidence is available on the most suitable MA-PROM to measure medication adherence in patients with CVD. The aim of this systematic review is to synthesise the measurement properties of MA-PROMs for patients with CVD and identify the most suitable MA-PROM for use in clinical practice or future research in patients with CVD. METHODS: An electronic search of nine databases (PubMed, MEDLINE, CINAHL, ProQuest Health and Medicine, Cochrane Library, PsychInfo, Scopus, Embase, and Web of Science) was conducted to identify studies that have reported on at least one of the measurement properties of MA-PROMs in patients with CVD. The methodological quality of the studies included in the systematic review was evaluated using the COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) checklist. RESULTS: A total of 40 MA-PROMs were identified in the 84 included studies. This review found there is a lack of moderate-to-high quality evidence of sufficient content validity for all MA-PROMs for patients with CVDs. Only eight MA-PROMs were classified in COSMIN recommendation category A. They exhibited sufficient content validity with very low-quality evidence, and moderate-to-high quality evidence for sufficient internal consistency. The 28 MA-PROMs that meet the requirements for COSMIN recommendation category 'B' require further validation studies. Four MA-PROMs including Hill-Bone Compliance Medication Scale (HBMS), the five-item Medication Adherence Report Scale (MARS-5), Maastricht Utrecht Adherence in Hypertension (MUAH), and MUAH-16 have insufficient results with high quality evidence for at least one measurement property and consequently are not recommended for use in patients with CVD. Two MA-PROMs (Adherence to Refills and Medications Scale [ARMS] and ARMS-7) are comprehensive and have moderate to high quality evidence for four sufficient measurement properties. CONCLUSION: From the eight MA-PROMs in COSMIN recommendation category A, ARMS and ARMS-7 were selected as the most suitable MA-PROMs for use in patients with CVD. They are the most comprehensive with be best quality evidence to support their use in clinical practice and research.

Disability-adjusted life years (DALYs) based COVID-19 health impact assessment: A systematic review protocol.

BACKGROUND: COVID-19 is a highly contagious infectious disease that emerged in 2019. This disease is causing devastating health, socio-economic, and economic crises. More specifically COVID-19 is affecting both the quality and length of human life. The overall health impact of this disease is measured by the disability-adjusted life years which is the sum of the life years lost due to disability (the effect on the health quality) and the years life lost due to premature death (effect on the length of life). The purpose of this review is to summarise DALYs-based health impact publications and produce compiled and informative literature that can aid the health regulators to make evidence-based decisions on mitigating COVID-19. METHODS: The review will be conducted using the PRISMA 2020 guidelines. The DALYs-based original observational and cross-sectional studies will be collected for assessing the health impact of COVID-19. Both the life quality and length impacts of COVID-19 will be reviewed. The life quality impact of COVID-19 will be measured using the life years lost due to disability (pre-recovery illness, pre-death illness, and post-acute consequences), and its impact on the length of life will be measured with years of life lost due to premature death (shortening of life expectancy). The combined health impact of COVID-19 on the quality and length of life will be measured in disability-adjusted life years. DISCUSSION: The impacts of COVID-19 on the two health outcomes (quality and length of life) will indicate the level of COVID-19 health burden. The increase or decrease of COVID-19 health impact might be due to the sample size differences of different studies and the omission of years lost due to post-acute consequences in some studies. After having a summarized systematic review health decision-makers will apply an impact-based response to COVID-19. TRAIL REGISTRATION: Systematic review registration: This protocol is pre-registered in PROSPERO with the registration number CRD42022324931.

Impact of COVID-19 on the food security and identifying the compromised food security dimension: A systematic review protocol.

BACKGROUND: Food security is substantially affected directly by COVID-19 and/or indirectly by the measures adopted for the prevention of COVID-19 transmission. The aim of this systematic review is to summarize the impact of COVID-19 on food security and identify the most compromised food security dimension to ease the food security regulators and actors' intervention prioritisation. METHODOLOGY: Primary research focused on the impact of COVID-19 on food security will be searched from three online databases (PubMed, Web of Science, and Scopus), manually using a google scholar search engine, and studies' reference list were also manually searched. The prevalence of food insecurity in each study and the most compromised food security dimension including their associated factors will be identified. The food insecurity before and after COVID-19 emergence and the status of food security dimension before and after COVID-19 will be compared and interpreted. DISCUSSION: The heterogeneity of the studies and the factors for the variability of outcomes will be discussed. COVID-19 had a negative impact on food security if the food insecurity prevalence before the emergence of COVID-19 is less than during the COVID-19 pandemic. Other confounding factors that can contribute to the high food insecurity prevalence like natural disasters, war, and instability will be considered in addition to COVID-19. REGISTRATION: This systematic review protocol is registered in PROSPERO under the registration number: CRD42022325475.

Emergency medical services in rural and urban Saudi Arabia: A qualitative study of Red Crescent emergency personnel' perceptions of workforce and patient factors impacting effective delivery.

Individuals who experience a traumatic injury or an acute illness are often reliant on initial healthcare assessment and support from a pre-hospital emergency medical service (EMS). These community-based support models perform a vital role in the provision of life-saving support, but research indicates that the availability, accessibility and resources of EMS are not equivalent in rural and urban areas, and there has been little recognition of the issues facing rural EMS provision outside of the USA, Europe and Australia. The purpose of the current study was to examine the lived experiences of Saudi Arabian EMS personnel, defined as emergency medical technicians, paramedics and local station managers. A semi-structured interview approach was used to collect data from 20 interviewees (10 each with rural and urban personnel) in the Riyadh region of the Kingdom of Saudi Arabia. This methodology was used to identify the key issues that these staff face in their day-to-day work practice and ascertain factors that may lead to service delivery issues in rural and urban areas. Data analyses identified three thematic categories impacting EMS delivery; two of these, Personnel Factors and Patient Factors, are the focus of this paper. The participants noted a number of key issues, including a lack of appropriate local training and limited resources in rural areas, as well as general areas of concern regarding the wider EMS staff demographic makeup and poor public awareness about the exact role of the EMS. Three key recommendations arising from this study include specialised training and ongoing accessible education for rural EMS staff to allow for better support for patients; consideration of supplementing the current EMS with additional external specialist staff; and the development and implementation of national public education programmes focusing on the role of the EMS within the community.

Actual and projected gaps in the provision of residential aged care in New South Wales, Australia.

Objective The need for residential care services will grow significantly over the coming years as the general population in Australia continues to age. The aim of this study was to assess the adequacy of residential care services across New South Wales (NSW), Australia, in relation to the current and predicted future aging population. Method This study was a secondary data analysis. Existing datasets were compiled for analysis by creation of a temporal geodatabase, with predicted population data from 2019 to 2029 linked to corresponding geographic zones. Results Demand for operational places was over capacity in 2019, at 101.5%. From 2019 to 2029, this will grow to 120.2% of 2019 capacity by 2024 and to 135.6% by 2029. An additional 25 800 operational places will be required by 2029 to meet targets. During the previous decade of 2008-18, operational places grew by only 11 502 places. Conclusions NSW was not providing an adequate level of residential aged care and, under current allocations, this problem will worsen substantially over time, with flow-on impacts for the health sector. With aged care reform a current federal government focus, the results of this study may guide decisions that better support the provision of residential aged care. What is known about this topic? The recently completed Australian Royal Commission into aged care noted widespread system failure and highlighted the gaps in medical services that older Australians were experiencing. What does this paper add? This paper reports that demand for residential aged care places in NSW was already over capacity in 2019 and that the availability of places varies considerably across the state. Further, an additional 25 800 operational places are required by 2029 to meet government targets. If the growth rate from the past decade is maintained, this will result in a shortfall of 14 298 aged care places in NSW alone. What are the implications? Without significant increases in the current rate of growth for aged care places, the mainstream medical and health sectors will face significant additional pressures arising from unmet need in both older patients and their informal carers.

Organisational factors affecting emergency medical services' performance in rural and urban areas of Saudi Arabia.

BACKGROUND: There is a disparity in outcomes between rural and urban emergency medical services (EMS) around the world. However, there is a scarcity of research that directly asks EMS staff in both rural and urban areas how service delivery could be improved. The aim of the present study is to gain insights from frontline workers regarding organisational factors that may underpin discrepancies between rural and urban EMS performance. SUBJECT AND METHODS: The study was undertaken in the Riyadh region of Saudi Arabia. Potential participants were currently employed by Saudi Red Crescent EMS as either a technician, paramedic or an EMS station manager, and had a minimum of five years experience with the EMS. Semi-structured interviews were undertaken between October 2019 and July 2020 with first respondents to a call for participants, and continued until data saturation was reached. All interviews were conducted in Arabic and transcribed verbatim. The Arabic transcript was shared with each participant, and they were asked to confirm their agreement with the transcription. The transcribed interviews were then translated into English; the English versions were shared with bi-lingual participants for validation, while independent certification of the translations were performed for data from participants not fluent in English. A thematic analysis methodological approach was used to examine the data. RESULTS: The final sample involved 20 participants (10 rural, 10 urban) from Saudi Red Crescent EMS. Data analyses identified key organisational factors that resulted in barriers and impediments for EMS staff. Differences and similarities were observed between rural and urban respondents, with identified issues including response and transportation time, service coordination, reason for call-out, as well as human and physical resourcing. CONCLUSION: The findings identified key issues impacting on EMS performance across both rural and urban areas. In order to address these problems, three changes are recommended. These recommendations include a comprehensive review of rural EMS vehicles, with a particular focus on the age; incentives to improve the numbers of paramedics in rural areas and more localised specialist training opportunities for rurally-based personnel; and the implementation of national public education program focusing on the role of the EMS.

Mitigating the impact of the 'silos' between the disability and aged-care sectors in Australia: Development of a Best Practice Framework.

BACKGROUND: Although a 'person-centred focus' is a legislated objective for both aged-care and disability services sectors in Australia, evidence suggests limited translation into systems and practices due to entrenched silos. This paper proposes a Best Practice Framework to mitigate these silos. METHODS: Mixed-methods research comprising key informant interviews with major stakeholders across both sectors; a survey of people with/without intellectual disability aged 60+ years; qualitative in-depth interviews; and survey of health professionals. RESULTS: There is an urgent need to develop inter-sectoral 'integrated care systems'. Key components include choice in accommodation; regular assessment of health and well-being indicators; development and adoption of nationally consistent policies/standards across integrated aged- and disability-care sectors; improved strategies for workforce planning; and upskilling of existing staff including place-based collaboration. CONCLUSIONS: An integrated service model requires collaboration on broader public policy instruments, appropriate planning and resourcing. A strategic shift is required to ensure better quality person-centred support systems.

Nontransported Cases after Emergency Medical Service Callout in the Rural and Urban Areas of the Riyadh Region.

BACKGROUND: Callouts resulting in patient nontransportation can impact the overall quality of prehospital Emergency Medical Service (EMS), as resources in health care are finite. While some studies have investigated the causes of nontransportation, few have examined whether there are differences between urban and rural patients. Similarly, there has been limited research focused on rural EMS in locations such as the Middle East. OBJECTIVES: This study investigated EMS cases that resulted in nontransportation in the urban and rural areas of the Riyadh region in the Kingdom of Saudi Arabia. METHODS: A cross-sectional study of 800 (400 rural and 400 urban) patient records was undertaken, using 12 months (January 1 to December 31, 2017) of data from the Saudi Red Crescent EMS. A random sampling method was used to select ambulance records from the 78 urban and rural EMS stations in the Riyadh region, with demographic data and reasons for patient nontransport analyzed comparatively. RESULTS: A total of 310 cases were nontransported (39%) (rural: 146; urban = 164). The highest rates of nontransportation cases were of medical and trauma callouts (44.6% and 39.6%, respectively), which was consistent in both areas. The most common reason for nontransportation in both urban and rural areas was refusal of treatment and transportation (66.5% and 59.9%, respectively). Further, 10 patients were treated on-scene and released by rural EMS, while no urban patients were treated and released. Overall, the case presentations of nontransported patients did not differ significantly between both areas, and it was found that gender, age, and geographic location were not predictors for nontransportation. CONCLUSIONS: The high rate of nontransportation, particularly in medical and trauma callouts, indicates that a review of current EMS protocols may be required, along with consideration of relevant community education programs.

Self-reported medication adherence tools in cardiovascular disease: protocol for a systematic review of measurement properties.

OBJECTIVE: The aim of this review is to identify high-quality, self-reported medication adherence tools for adults with cardiovascular disease to improve health outcomes. INTRODUCTION: Medication adherence is a complex concept affected by multiple factors and positively associated with clinical outcomes. Poor adherence to cardiovascular medications is a hindrance to the effective management of cardiovascular disease, leading to poor disease prognosis or increased risk of death. Valid and reliable measurement is crucial to identify patients with poor adherence, preferably before an adverse outcome occurs. INCLUSION CRITERIA: This review will consider studies that include adults, aged 18 years and over, with a diagnosis of cardiovascular disease. The construct of medication adherence has three phases: initiation, implementation and discontinuation. Included tools need to measure at least one of these phases. The review will consider studies of any study design that report on the measurement properties of self-reported medication adherence tools among adults with cardiovascular disease. METHODS: The following databases will be searched from inception to present: PubMed, MEDLINE, CINAHL, ProQuest Health and Medicine, Cochrane Library, PsycINFO, Scopus, Embase and Web of Science. Articles published in any language will be included, with no date limit. Data extraction will be performed by one reviewer and cross-checked by another reviewer. Data from the included studies will be synthesized using tables for the quality of methods, and measurement property results. SYSTEMATIC REVIEW REGISTRATION NUMBER: PROSPERO CRD42019124291.

Multimorbidity in older people with intellectual disability.

BACKGROUND: There is paucity of research from Australia about comorbidity in older people with intellectual disability (PwID). This paper examines the burden of chronic diseases and associated sociodemographic correlates in a cohort of PwID aged 60+. METHODS: A cross-sectional survey was used with community-dwelling older PwID in urban/rural regions of two Australian states. Recruitment was undertaken via a multi-prong approach and each subject (N = 391; 236 urban/155 rural) personally interviewed. RESULTS: Findings show older PwID experience considerable multimorbidity (X = 3.8; 53.5% had 2-6 conditions). Conditions included arthritis (40%), diabetes (26%), cardiovascular diseases (23.6%), asthma (16.1%), carcinomas (10.0%) and mental health disorders (34.5%). CONCLUSIONS: There was significant multimorbidity in older PwID, with evolution of life trajectories of select conditions associated with socioeconomic disadvantage and heath facility access barriers. Greater scrutiny of progressive health debilitation leading into older age and increased engagement by healthcare systems is required earlier in the lives of PwID.

Factors Impacting Patient Outcomes Associated with Use of Emergency Medical Services Operating in Urban Versus Rural Areas: A Systematic Review.

The goal of this systematic review was to examine the existing literature base regarding the factors impacting patient outcomes associated with use of emergency medical services (EMS) operating in urban versus rural areas. A specific subfocus on low and lower-middle-income countries was planned but acknowledged in advance as being potentially limited by a lack of available data. Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines were followed during the preparation of this systematic review. A comprehensive literature search of PubMed, EBSCO (Elton B. Stephens Company) host, Web of Science, ProQuest, Embase, and Scopus was conducted through May 2018. To appraise the quality of the included papers, the Critical Appraisal Skills Programme Checklists (CASP) were used. Thirty-one relevant and appropriate studies were identified; however, only one study from a low or lower-middle-income country was located. The research indicated that EMS in urban areas are more likely to have shorter prehospital times, response times, on-scene times, and transport times when compared to EMS operating in rural areas. Additionally, urban patients with out-of-hospital cardiac arrest or trauma were found to have higher survival rates than rural patients. EMS in urban areas were generally associated with improved performance measures in key areas and associated higher survival rates than those in rural areas. These findings indicate that reducing key differences between rural and urban settings is a key factor in improving trauma patient survival rates. More research in rural areas is required to better understand the factors which can predict these differences and underpin improvements. The lack of research in this area is particularly evident in low- and lower-middle-income countries.

Personal relationships during end-of-life care: Support staff views of issues for individuals with intellectual disability.

BACKGROUND: Life expectancy for persons with intellectual disability has increased dramatically over the past decade, which has seen an associated rise in the need for end-of-life care. However, little is known regarding how end-of-life affects the individual's personal relationships with family, friends and staff. METHODS: Focus group interviews were undertaken with 35 disability support workers from four rural and two metropolitan locations in NSW and Queensland, Australia. A semi-structured interview guide was used, with a focus on the gaining an understanding of the impact that end-of-life has on personal relationships for persons with intellectual disability. RESULTS: The thematic analysis identified three key thematic areas: Relationships with Family, Relationships with Friends and Staff Roles. Relationships with Family had three sub-themes of 'Active and Ongoing', 'Active but Limited' and 'After Death'. Relationships with Friends had two sub-themes of 'Positive Experiences' and 'Negative Experiences', and Staff Roles had two sub-themes of 'Loss of Contact' and 'Default Decision Making'. DISCUSSION: The frequency of family contact was not reported as increasing or decreasing following the diagnosis of a life-ending illness and during an individual's end-of-life. A lack of counselling support was noted as potentially impairing the individual's friends' ability to cope with death. Staff also reported a number of concerns regarding how their relationships with the individual changed, particularly when end-of-life entailed potential movement of the individual with intellectual disability to a new residential setting.

Caregiving, Employment and Social Isolation: Challenges for Rural Carers in Australia.

Australia has one of the world's highest life expectancy rates, and there is a rapidly growing need for informal caregivers to support individuals who are ageing, have chronic illness or a lifelong disability. These informal carers themselves face numerous physical and psychological stressors in attempting to balance the provision of care with their personal life, their work commitments and family responsibilities. However, little is known about the specific challenges facing rural carers and the barriers that limit their capacity to provide ongoing support. A cross-sectional survey composed of open-ended responses and demographic/socioeconomic measures used routinely by the Australian Bureau of Statistics (ABS) and the Australian Institute of Health & Welfare (AIHW) was used with a cohort of 225 rurally-based carers within New South Wales, Australia. Demographic questions specified the respondents' age, gender, employment, caregiving status, condition of and relationship to the care recipient, postcode, residency status, and distance and frequency travelled to provide care. Open-ended comments sections were provided to allow participants to describe any issues and problems associated with caregiving including employment, travel, residency, carer support groups and any other general information. The results show that most rural carers were middle-aged women supporting a spouse or a child. Unpredictability associated with providing care exacerbated demands on carers' time, with many reporting significant employment consequences associated with inflexibility and limited job options in rural locations. Specific issues associated with travel requirements to assist with care were reported, as were the impacts of care provision on the respondents' own personal health. The majority of carers were aware of the social supports available in their local rural community, but did not access them, leaving the carers vulnerable to marginalisation. Problems associated with employment were noted as resulting in financial pressures and associated personal stress and anxiety for the caregivers. While this issue is not necessarily limited to rural areas, it would appear that the lack of opportunity and flexibility evident in rural areas would exacerbate this problem for non-metropolitan residents. The participants also identified specific barriers to the provision of care in rural areas, including the significant impact of travel. Access to support services, such as carer groups, were rarely accessed due to a mix of factors including inaccessibility, poor timing and a lack of anonymity. Financially, there was considerable evidence of hardship, and there is an urgent need for a comprehensive review of government and community-based support to better meet the needs of rural carers.

Challenges in providing end-of-life care for people with intellectual disability: Health services access.

BACKGROUND: Increasing life expectancy for people with intellectual disability is resulting in greater need for end-of-life care services. However, limited knowledge is available regarding what barriers to accessing end-of-life care support are evident, particularly comparatively across rural and metropolitan locations. METHODS: Focus group interviews were undertaken with 35 direct-care staff from four rural and two metropolitan locations. A semistructured interview guide was used, with a focus on health service access. All focus group data were independently transcribed, with thematic analysis then performed. RESULTS: Frequency analysis identified 262 statements relating to health services access. Thematic analysis identified four key areas of "isolation," "support from doctors," "general health support access" and "internal staffing issues." CONCLUSIONS: Improved access to end-of-life services is urgently required across both rural and metropolitan areas. Development of specialist training and support models for both disability and general healthcare staff may assist to reduce some identified barriers.

Informed consent in a vulnerable population group: supporting individuals aging with intellectual disability to participate in developing their own health and support programs.

Objective The aim of the present study was to explore the use of complementary consent methodologies to support a potentially vulnerable group of people, namely those aging with intellectual disability, to provide personal input. It was premised on the view that processes to determine capacity for consent, appropriately modified to account for individual capabilities and current circumstances, could facilitate meaningful participation in the development of personal health care plans of people previously excluded from contributing. Methods The present descriptive case study research was undertaken in New South Wales, Australia. A seven-step process for determining capacity for consent was developed, and 10 participants aged between 54 and 73 years with lifelong intellectual disability and health comorbidities were involved. A variety of assistive communication tools was used to support individuals to demonstrate their capacity for giving informed consent. Results After being provided with tailored support mechanisms, seven participants were considered to meet all seven components for determining capacity for consent. Three participants were deemed not to have capacity to give consent regardless of the type of support provided. Conclusions Three critical factors for facilitating personal involvement in decision making for individuals with an intellectual disability were identified: (1) defining consent specifically for the target outcome; (2) outlining the criteria needed for consent to be obtained; and (3) using appropriately modified alternative communication mechanisms as necessary. What is known about the topic? Self-determination is one of the fundamental principles of human rights legislation around the world and, as such, it is considered desirable to have personal input by individuals into the development of their own health care plans. However, this is not always considered feasible if the person comes from a group in the community perceived to be vulnerable to exploitation and viewed as lacking capacity to give informed consent. This results in the use of proxy respondents, who may not accurately represent the desires and life aspirations of the individual. What does this paper add? This paper examines the development and implementation of a targeted program to support individuals aging with lifelong intellectual disability to demonstrate their capacity to provide informed consent. Specifically, it outlines how alternative communications methods, tailored to personal needs and capacity, can assist an individual to both understand and then confirm their understanding of consent in order to participate in developing health care plans. What are the implications for practitioners? People with intellectual disability are now living longer and are increasingly at risk of serious health conditions. The development of long-term health management plans has traditionally not included individuals with more complex needs and moderate intellectual disability, but the present study shows that members of this cohort can successfully understand and consent to participate in health care decision making. By proactively supporting this process, community and healthcare settings may be able to directly facilitate contribution from more individuals, therefore better meeting the goal of person-centred support.