"Respecting our patients' choices": making the organizational decision to participate in voluntary assisted dying provision: findings from semi-structured interviews with a rural community hospice board of management.

BACKGROUND: There is limited literature around how palliative care organizations determine the degree to which they will interface with voluntary assisted dying in jurisdictions where it is legal. The aim of this research was to describe the experience of the board of management of an Australian community-based hospice during their decision-making process around whether to support voluntary assisted dying in the facility, prior to the legislation coming into operation. METHODS: The Board considered this decision over ten meetings in 2020, during which time they received information on the legislation, relevant literature, feedback from workshops which included the community, comment from hospice founders, staff survey results and presentations by clinicians able to discuss the impact of voluntary assisted dying on palliative care services. Members were encouraged to make notes of their own experiences during this time. Following this, semi-structured interviews were conducted with seven of the nine board members. Interviews were audio-recorded and transcribed verbatim and analysed using conventional qualitative content analysis method. RESULTS: The board members experienced a sense of journey in reaching an overall decision, which was to allow full participation in voluntary assisted dying provision for inpatients. Themes based on the journey motif included: starting from a personal view; moving to a hospice perspective; exploring if voluntary assisted dying can be part of end-of-life care; awareness and assessment of risks to the Hospice; arriving at a common platform to vote on; factors facilitating a safe decision-making journey; and personal impact of the journey. CONCLUSIONS: The group highlighted several facilitators of a successful outcome including having adequate time, the availability of useful resources, sound board processes and a trusting culture. The study may provide support to other healthcare organisations as they face similar decisions triggered by legislative change.

Health conditions and their impact among adolescents and young adults with Down syndrome.

OBJECTIVE: To examine the prevalence of medical conditions and use of health services among young adults with Down syndrome and describe the impact of these conditions upon their lives. METHODS: Using questionnaire data collected in 2011 from parents of young adults with Down syndrome we investigated the medical conditions experienced by their children in the previous 12 months. Univariate, linear and logistic regression analyses were performed. RESULTS: We found that in addition to the conditions commonly experienced by children with Down syndrome, including eye and vision problems (affecting 73%), ear and hearing problems (affecting 45%), cardiac (affecting 25%) and respiratory problems (affecting 36%), conditions also found to be prevalent within our young adult cohort included musculoskeletal conditions (affecting 61%), body weight (affecting 57%), skin (affecting 56%) and mental health (affecting 32%) conditions and among young women menstrual conditions (affecting 58%). Few parents reported that these conditions had no impact, with common impacts related to restrictions in opportunities to participate in employment and community leisure activities for the young people, as well as safety concerns. CONCLUSION: There is the need to monitor, screen and provide appropriate strategies such as through the promotion of healthy lifestyles to prevent the development of comorbidities in young people with Down syndrome and, where present, to reduce their impact.

Hospital admissions in children with down syndrome: experience of a population-based cohort followed from birth.

OBJECTIVE: Children with Down syndrome, the most common genetic cause of intellectual disability, are prone to multiple and varied health-related problems. This study describes patterns of hospitalisations for children and young people with Down syndrome in Western Australia. METHODS: Birth records were linked to the Western Australian population-based Intellectual Disability database to identify all children born with Down syndrome in Western Australia between 1 January, 1983 and 31 December, 1999. These records were linked to the Hospital Morbidity Data System to provide information on all hospitalisations up to 31 December, 2004. Hospitalisation data, coded using ICD-9CM or ICD-10 (v0.5) were grouped into clinically relevant categories using the primary diagnosis. Rates of hospital admission for all and specific diagnoses were expressed in 1000-person-years at-risk and median age at first admission and length of stay were calculated. RESULTS: Of the 405 children, 395 had one or more hospital admissions, totalling 3786 admissions for all children and an estimated 39.5 person-years in hospital. On average, children were admitted 9.7 times, with an estimated rate of 757.2 admissions per 1000pyr (95% CI: 680, 843). A quarter of all admissions occurred in the first year of life. The average hospital length of stay was 3.8 days (95% CI: 3.7, 4.1). Upper respiratory tract conditions affected the most children (58.5%) and accounted for 12.1% of all admissions. Other disorders which affected a high percentage of children were ear/hearing conditions (50.6%), disorders of the oral cavity (38.0%) and lower respiratory tract conditions (37.5%). Overall, children with Down syndrome were hospitalised at a rate five times (95% CI = 4.3-6.2) that of the general population. CONCLUSION: Children with Down syndrome are at increased risk of morbidity for varied causes underlining the importance of comprehensive and targeted primary care for this group.

The epidemiology of injury among surfers, kite surfers and personal watercraft riders: wind and waves.

The objective of this review was to summarize the epidemiological literature for surfboard riding (surfing), kite surfing and personal watercraft (PWC) riding injuries and describe the incidence and nature of these injuries, common risk factors, and strategies for prevention. The databases searched for relevant publications included Medline, ScienceDirect, ProQuest International, PubMed, Academic Search Premier as well as Google Scholar to identify additional, non-indexed studies. Overall, there was a lack of good quality descriptive studies for these three sports and many of the studies reviewed involved the use of administrative datasets or case-series designs. Among the few studies to provide incidence estimates, there were inconsistencies in how injury was defined, the inclusion criteria, and the reporting of incidence rates, making comparisons within and between the sports difficult. While the reported incidence rates were generally low, head and lower extremity injuries were common across all three sports. Only two studies reported evidence for postulated risk factors. Bigger waves and surfing over rock or reef sea floor increased the risk of injury among competitive surfers, while older age and having more experience increased the risk of significant injuries among recreational surfers. No evaluations of preventative measures were identified. This review demonstrates the need for well-designed epidemiological research, especially studies that focus on the accurate measurement and description of incidence, nature, severity and circumstances of injuries. Once this has occurred, interventions targeted at reducing the incidence of injuries among these sports can be designed, implemented and evaluated.

Developing a tool to measure safe recreational boating practice.

To reduce the number of recreational boating injuries and incidents, appropriate educational measures are important to improve boat operator safety practice. A tool (the boating safety scale (BSS)) to measure safe practice was developed and tested among Western Australian recreational boaters. The BSS allowed the identification of factors influencing safety behaviour among recreational boaters. Using a database of registered recreational vessels, a telephone survey was conducted in 2008 among a sample of 1002 boat owners and a response fraction of 47.5% was achieved. The majority of boaters displayed a moderate level of safe boating behaviour based on BSS scores. Not being a member of a boating association and going boating less often in protected waters was associated with a higher level of boating safety behaviour. With further development, the BSS can provide information to assist is designing effective intervention strategies to reduce the number of boating-related fatalities, injuries and incidents.

Associations between intrapersonal and neighborhood environmental characteristics and cycling for transport and recreation in adults: baseline results from the RESIDE study.

BACKGROUND: This study investigated the relationship between individual and neighborhood environmental factors and cycling for transport and for recreation among adults living in Perth, Western Australia. METHODS: Baseline cross-sectional data from 1813 participants (40.5% male; age range 18 to 78 years) in the RESIDential Environment (RESIDE) project were analyzed. The questionnaire included information on cycling behavior and on cycling-specific individual, social environmental, and neighborhood environmental attributes. Cycling for transport and recreation were dichotomized as whether or not individuals cycled in a usual week. RESULTS: Among the individual factors, positive attitudes toward cycling and perceived behavioral control increased the odds of cycling for transport and for recreation. Among the neighborhood environmental attributes, leafy and attractive neighborhoods, access to bicycle/walking paths, the presence of traffic slowing devices and having many 4-way street intersections were positively associated with cycling for transport. Many alternative routes in the local area increased the odds of cycling for recreation. CONCLUSIONS: Effective strategies for increasing cycling (particularly cycling for transport) may include incorporating supportive environments such as creating leafy and attractive neighborhood surroundings, low traffic speed, and increased street connectivity, in addition to campaigns aimed at strengthening positive attitudes and confidence to cycle.

Physical activity behavior of dog owners: development and reliability of the Dogs and Physical Activity (DAPA) tool.

BACKGROUND: This study aimed to develop a reliable instrument, the Dogs and Physical Activity (DAPA) tool, for measuring important attributes and scales relating to the dog-walking behavior of dog owners. METHODS: Items measuring dog-specific individual, social environmental, physical environmental, and policy-related factors that affect dog owners' walking with their dogs were assessed for test-retest reliability. Factor analysis was undertaken to demonstrate that the collection of test items had underlying constructs consistent with the theoretical framework. RESULTS: DAPA-tool items had test-retest reliability scores >.7, indicating a high level of stability. Distinct general and dog-specific constructs of subscales measuring dog-supportive features of parks, barriers to dog walking, and behavioral beliefs about the outcomes of regular dog walking were demonstrated through factor analysis. CONCLUSIONS: The DAPA tool is the first comprehensive, reliable tool for measuring important attributes and scales relating to dog owners' physical activity and the context-specific factors that affect owners' walking with their dogs.

Evaluation of the implementation of a state government community design policy aimed at increasing local walking: design issues and baseline results from RESIDE, Perth Western Australia.

OBJECTIVES: To describe the design and baseline results of an evaluation of the Western Australian government's pedestrian-friendly subdivision design code (Liveable Neighborhood (LN) Guidelines). METHODS: Baseline results (2003-2005) from a longitudinal study of people (n=1813) moving into new housing developments: 18 Liveable, 11 Hybrid and 45 Conventional (i.e., LDs, HDs and CDs respectively) are presented including usual recreational and transport-related walking undertaken within and outside the neighborhood, and 7-day pedometer steps. RESULTS: At baseline, more participants walked for recreation and transport within the neighborhood (52.6%; 36.1% respectively), than outside the neighborhood (17.7%; 13.2% respectively). Notably, only 20% of average total duration of walking (128.4 min/week (SD159.8)) was transport related and within the neighborhood. There were few differences between the groups' demographic, psychosocial and perceived neighborhood environmental characteristics, pedometer steps, or the type, amount and location of self-reported walking (p>0.05). However, asked what factors influenced their choice of housing development, more participants moving into LDs reported aspects of their new neighborhood's walkability as important (p<0.05). CONCLUSIONS: The baseline results underscore the desirability of incorporating behavior and context-specific measures and value of longitudinal designs to enable changes in behavior, attitudes, and urban form to be monitored, while adjusting for baseline residential location preferences.

Can the impact on health of a government policy designed to create more liveable neighbourhoods be evaluated? An overview of the RESIDential Environment Project.

There is growing interest in the impact of community design on the health of residents. In 1998, the Western Australian Government began a trial of new subdivision design codes (i.e. Liveable Neighbourhoods Community Design Code) aimed at creating pedestrian-friendly neighbourhoods to increase walking, cycling and public transport use. The trial provided a unique opportunity for a natural experiment to evaluate the impact of a government planning policy on residents. Nevertheless, evaluations of this kind present a number of methodological challenges in obtaining the highest quality evidence possible. This paper describes the RESIDential Environment Project's study design and discusses how various methodological challenges were overcome.

Constructing indices representing supportiveness of the physical environment for walking using the Rasch measurement model.

BACKGROUND: The objectives of this study were to use the Rasch model to 1) assess the psychometric properties of a physical environmental audit instrument and 2) to develop indices of interrelated environmental attributes that summarize environmental supportiveness for walking. METHODS: A set of items were derived representing two conceptual physical environmental constructs: 1) functional/safety, and; 2) aesthetics. Ad hoc criteria based on point-biserial and Rasch-based fit statistics were used to examine the construct validity and internal reliability of the two constructs. RESULTS: The Rasch-based fit statistics assisted in identifying 12 items that belonged to the functional/safety construct and 4 items that belonged to the aesthetic construct. The reliability of the two constructs were low to moderate (functional/safety r(beta) = 0.19 and aesthetics r(beta) = 0.35). CONCLUSION: Given the vast number of built environmental attributes, a means of developing summary indices is essential. Future studies should assess the reliability and validity of indices that summarize physical environmental characteristics conducive to walking before testing them in predictive models of physical activity. More research examining procedures for measuring the built environment and techniques for analyzing environmental data are needed to guide future research in this area.

Correlates of distances traveled to use recreational facilities for physical activity behaviors.

BACKGROUND: Information regarding how far people are willing to travel to use destinations for different types of recreational physical activity behaviors is limited. This study examines the demographic characteristics, neighborhood opportunity and specific-physical activity behaviors associated with distances traveled to destinations used for recreational physical activity. METHODS: A secondary analysis was undertaken of data (n = 1006) from a survey of Western Australian adults. Road network distances between respondents' homes and 1) formal recreational facilities; 2) beaches and rivers; and 3) parks and ovals used for physical activity were determined. Associations between distances to destinations and demographic characteristics, neighborhood opportunity (number of destinations within 1600 meters of household), and physical activity behaviors were examined. RESULTS: Overall, 56.3% of respondents had used a formal recreational facility, 39.9% a beach or river, and 38.7% a park or oval. The mean distance traveled to all destinations used for physical activity was 5463 +/- 5232 meters (m). Distances traveled to formal recreational facilities, beaches and rivers, and parks and ovals differed depending on the physical activity undertaken. Younger adults traveled further than older adults (7311.8 vs. 6012.6 m, p = 0.03) to use beaches and rivers as did residents of socio-economically disadvantaged areas compared with those in advantaged areas (8118.0 vs. 7311.8 m, p = 0.02). Club members traveled further than non-members to use parks and ovals (4156.3 vs. 3351.6 meters, p = 0.02). The type of physical activity undertaken at a destination and number of neighborhood opportunities were also associated with distance traveled for all destination types. CONCLUSION: The distances adults travel to a recreational facility depends on the demographic characteristics, destination type, physical activity behavior undertaken at that destination, and number of neighborhood opportunities. Knowing how far adults travel to undertake physical activity will assist in designing supportive neighborhoods and designing future ecological research.

Neighborhood environmental factors correlated with walking near home: Using SPACES.

PURPOSE: The physical environment plays an important role in influencing participation in physical activity, although the specific factors that are correlated with different patterns of walking remain to be determined. We examined correlations between physical environmental factors and self-reported walking for recreation and transport near home. METHODS: The local neighborhood environments (defined as a 400-m radius from the respondent's home) of 1678 adults were assessed for their suitability for walking. The environmental data were collected during 2000 using the Systematic Pedestrian and Cycling Environmental Scan (SPACES) instrument together with information from other sources. We used logistic regression modeling to examine the relationship between the attributes of the physical environment and the self-reported walking behavior undertaken near home. RESULTS: Functional features were correlated with both walking for recreation (odds ratio (OR) 1.62; 95% confidence interval (CI): 1.20-2.19) and for transport (OR 1.30; 95% CI: 0.97-1.73). A well-maintained walking surface was the main functional factor associated with walking for recreation (OR 2.04; 95% CI: 1.43-2.91) and for transport (OR 2.13; 95% CI: 1.53-2.96). Destination factors, such as shops and public transport, were significantly correlated with walking for transport (OR 1.80; 95% CI: 1.33-2.44), but not recreation. CONCLUSION: The findings suggest that neighborhoods with pedestrian facilities that are attractive and comfortable and where there are local destinations (such as shops and public transport) are associated with walking near home.

Development of a reliable measure of walking within and outside the local neighborhood: RESIDE's Neighborhood Physical Activity Questionnaire.

BACKGROUND: The RESIDential Environment project (RESIDE) is a longitudinal study evaluating the impact of a new residential design code on walking. OBJECTIVE: To develop a reliable measure of walking--undertaken within and outside the neighborhood--and overall physical activity. METHODS: A test-retest reliability study was undertaken (n = 82, mean age 39 years). The instrument was based on the International Physical Activity Questionnaire (IPAQ-short version) and Active Australia Survey. It measured usual frequency and duration of (1) recreational- and transport-related walking within and outside the neighborhood and (2) other vigorous and moderate physical activities. RESULTS: Reliability of recall of whether participants had walked within (k = 0.84) and outside (0.73) the neighborhood was acceptable. Similarly, recall of frequency and duration of transport and recreational-related walking within the neighborhood was excellent (ICC > or = 0.82), as was recall of transport-related walking trips outside the neighborhood (ICC > or = 0.84). Reliability for duration of recreational walking outside the neighborhood was fair to good (ICC = 0.55). The reliability of indices of total physical activity based on MET min/week (ICC = 0.82) and MET min/week dichotomized to 'sufficient' physical activity for health (kappa = 0.67) were both acceptable. CONCLUSIONS: The Neighborhood Physical Activity Questionnaire (NPAQ) is sufficiently reliable for studies examining environmental correlates of walking within the neighborhood.

Developing a reliable audit instrument to measure the physical environment for physical activity.

BACKGROUND: The physical environment plays an important role in influencing participation in physical activity, although which factors of the physical environment have the greatest effect on patterns of activity remain to be determined. We describe the development of a comprehensive instrument to measure the physical environmental factors that may influence walking and cycling in local neighborhoods and report on its reliability. METHODS: Following consultation with experts from a variety of fields and a literature search, we developed a Systematic Pedestrian and Cycling Environmental Scan (SPACES) instrument and used it to collect data over a total of 1987 kilometers of roads in metropolitan Perth, Western Australia. The audit instrument is available from the first author on request. Additional environmental information was collected using desktop methods and geographic information systems (GIS) technology. We assessed inter- and intra-rater reliability of the instrument among the 16 observers who collected the data. RESULTS: The observers reported that the audit instrument was easy to use. Both inter- and intra-rater reliability of the environmental scan instrument were generally high. CONCLUSIONS: Our instrument provides a reliable, practical, and easy-to-use method for collecting detailed "street-level" data on physical environmental factors that are potential influences on walking in local neighborhoods.