Determinants of pre-hospital care non-usage for patients with emergency care needs [including commentary by Snooks H.]

Objective-To establish the demographic, health status and insurance determinants of pre-hospital ambulance non-usage for patients with emergency medical needs. Methods-Triage category, date of birth, sex, marital status, country of origin, method and time of arrival, ambulance insurance status, diagnosis, and disposal were collected for all patients who presented over a four month period (n=10 229) to the emergency department of a major provincial hospital. Data for patients with urgent (n=678) or critical care needs (n=332) who did not use pre-hospital care were analysed using Poisson regression. Results-Only a small percentage (6.6%) of the total sample were triaged as having urgent medical needs or critical care needs (3.2%). Predictors of usage for those with urgent care needs included age greater than 65 years (prevalence ratio (PR)=0.54; 95% confidence interval (CI)= 0.35 to 0.83), being admitted to intensive care or transferred to another hospital (PR=0.62; 95% CI=0.44 to 0.89) or ward (PR=0.72; 95% CI=0.56 to 0.93) and ambulance insurance status (PR=0.67; 95% CI=052 to 0.86). Sex, marital status, time of day and country of origin were not predictive of usage and non-usage. Predictors of usage for those with critical care needs included age 65 years or greater (PR=0.45; 95% CI=0.25 to 0.81) and a diagnosis of trauma (PR=0.49; 95% CI=0.26 to 0.92). A non-English speaking background was predictive of non-usage (PR=1.98; 95% CI=1.06 to 3.70). Sex, marital status, time of day, triage and ambulance insurance status were not predictive of non-usage. Conclusions-Socioeconomic and medical factors variously influence ambulance usage depending on the severity or urgency of the medical condition. Ambulance insurance status was less of an influence as severity of condition increased suggesting that, at a critical level of urgency, patients without insurance are willing to pay for a pre-hospital ambulance service.

Terminally-ill people living alone without a caregiver: an Australian national scoping study of palliative care needs

Home-based palliative care services are facing increasing challenges in servicing the needs of clients who live alone and without a primary caregiver. The findings from the analysis of 721 services’ records from three Australian states, and feedback from health professionals in interviews and postal surveys, demonstrated that there were aspects of being on one’s own with a terminal illness and living at home that require a specialised approach and support. This study explored the issues of palliative care patients living alone, from a service provider perspective, and provided evidence-based information to assist with service planning. The study made recommendations to the Australian Department of Health and Ageing about services considered important in developing support structures for this growing population.

Interest from Tertiary Educated Persons in Fostering Children with Higher Care needs under a Professional (Paid) Model Compared with General Foster Care

The number of Australian children requiring foster care due to abuse and neglect is increasing at a faster rate than suitable carers can be recruited. Currently increased numbers of foster children are presenting with higher care needs. Evidence suggests carers with a higher education could contribute to placement stability and ultimately provide more positive outcomes for this group of children. This paper explores the level of interest by tertiary educated persons toward a model of fostering for children with higher needs. Using a descriptive survey methodology, a convenience sample of 644 university undergraduate and postgraduate students within faculties of health sciences, and education, arts and social sciences was employed. Psychology students in the 17-26 year old age group showed greatest interest in a professional foster care model and this was statistically significant (p=0.002 955 CI .000-.010) when compared to other health professionals and other age groups. Education students held the highest interest in general fostering although not statistically significant. When these survey results were extrapolated to the total number of health professionals in Australia there could be 8,385 potential recruits for a model professional foster care. Focused campaigns are required to source professional as recruits to fostering with the benefit of servicing the placement needs of higher care needs children and contributing to general foster care resources.

Children with special health care needs : social and learning competence in the early years

The number of children with special health care needs surviving infancy and attending school has been increasing. Due to their health status, these children may be at risk of low social-emotional and learning competencies (e.g., Lightfoot, Mukherjee, & Sloper, 2000; Zehnder, Landolt, Prchal, & Vollrath, 2006). Early social problems have been linked to low levels of academic achievement (Ladd, 2005), inappropriate behaviours at school (Shiu, 2001) and strained teacher-child relationships (Blumberg, Carle, O‘Connor, Moore, & Lippmann, 2008). Early learning difficulties have been associated with mental health problems (Maughan, Rowe, Loeber, & Stouthamer-Loeber, 2003), increased behaviour issues (Arnold, 1997), delinquency (Loeber & Dishion, 1983) and later academic failure (Epstein, 2008). Considering the importance of these areas, the limited research on special health care needs in social-emotional and learning domains is a factor driving this research. The purpose of the current research is to investigate social-emotional and learning competence in the early years for Australian children who have special health care needs. The data which informed this thesis was from Growing up in Australia: The Longitudinal Study of Australian Children. This is a national, longitudinal study being conducted by the Commonwealth Department of Families, Housing, Community Services and Indigenous Affairs. The study has a national representative sample, with data collection occurring biennially, in 2004 (Wave 1), 2006 (Wave 2) and 2008 (Wave 3). Growing up in Australia uses a cross-sequential research design involving two cohorts, an Infant Cohort (0-1 at recruitment) and a Kindergarten Cohort (4-5 at recruitment). This study uses the Kindergarten Cohort, for which there were 4,983 children at recruitment. Three studies were conducted to address the objectives of this thesis. Study 1 used Wave 1 data to identify and describe Australian children with special health care needs. Children who identified as having special health care needs through the special health care needs screener were selected. From this, descriptive analyses were run. The results indicate that boys, children with low birth weight and children from families with low levels of maternal education are likely to be in the population of children with special health care needs. Further, these children are likely to be using prescription medications, have poor general health and are likely to have specific condition diagnoses. Study 2 used Wave 1 data to examine differences between children with special health care needs and their peers in social-emotional competence and learning competence prior to school. Children identified by the special health care needs screener were chosen for the case group (n = 650). A matched case control group of peers (n = 650), matched on sex, cultural and linguistic diversity, family socioeconomic position and age, were the comparison group. Social-emotional competence was measured through Social/Emotional Domain scores taken from the Growing up in Australia Outcome Index, with learning competence measured through Learning Domain scores. Results suggest statistically significant differences in scores between the two groups. Children with special health care needs have lower levels of social-emotional and learning competence prior to school compared to their peers. Study 3 used Wave 1 and Wave 2 data to examine the relationship between special health care needs at Wave 1 and social-emotional competence and learning competence at Wave 2, as children started school. The sample for this study consisted of children in the Kindergarten Cohort who had teacher data at Wave 2. Results from multiple regression models indicate that special health care needs prior to school (Wave 1) significantly predicts social-emotional competence and learning competence in the early years of school (Wave 2). These results indicate that having special health care needs prior to school is a risk factor for the social-emotional and learning domains in the early years of school. The results from these studies give valuable insight into Australian children with special health care needs and their social-emotional and learning competence in the early years. The Australia population of children with special health care needs were primarily male children, from families with low maternal education, were likely to be of poor health and taking prescription medications. It was found that children with special health care needs were likely to have lower social-emotional competence and learning competence prior to school compared to their peers. Results indicate that special health care needs prior to school were predictive of lower social-emotional and learning competencies in the early years of school. More research is required into this unique population and their competencies over time. However, the current research provides valuable insight into an under researched 'at risk' population.

Mothers of young children with special health care needs : maternal well-being and engagement in work

This thesis reports research focused on the well-being and employment experiences of mothers who have a child with special health care needs. Data are drawn from Growing Up in Australia: The Longitudinal Study of Australian Children (LSAC). This is a public access database. The thesis uses the social ecological theory of Bronfenbrenner (1984) and the work of Zubrick et al. (2000) on human and social capital to inform the conceptual framework developed for the research. Four studies are reported. LSAC has a nationally representative sample of Australian children and their families. The study is tracking the development of 10,000 children, with data collected every two years, from 2004 to 2018. This thesis uses data from the Kindergarten Cohort of LSAC. The 4,983 children in the Kindergarten Cohort were aged 4 years at recruitment into the study in 2004. The analyses in this thesis use child and family data from Wave 1 (2004) and Wave 2 (2006) for a subsample of the children who are identified as having special health needs. This identification is based on a short screening questionnaire included in the Parent 1 Interview at each wave of the data collection. It is the children who are identified as having special health care needs which can be broadly defined as chronic health conditions or developmental difficulties. However, it is the well-being and employment experiences of the mothers of these children that are the primary focus in three of the four studies reported in this thesis.

Australian children with special health care needs: Social-emotional and learning competencies in the early years

This study examined the relationship between special health care needs and social-emotional and learning competence in the early years, reporting on two waves of data from the Kindergarten Cohort of Growing up in Australia: The Longitudinal Study of Australian Children (LSAC). Six hundred and fifty children were identified through the 2-question Special Health Care Needs Screener as having special health care needs. Children with special health care needs were more likely to be male, to have been of low birth weight, to be taking prescription medications, to be diagnosed with a specific health condition and to be from families where the mother was less well educated. These children scored significantly lower on teacher-rated social-emotional and learning competencies prior to school compared to a control group of children without special health care needs. Multiple regression analyses indicated that being identified with a special health care need prior to school predicted lower social-emotional and learning competencies in the early years of school. Results are discussed in terms of the implications for policy and practice.

The development of a supportive care needs assessment tool for Indigenous people with cancer

Background: Little is known about the supportive care needs of Indigenous people with cancer and to date, existing needs assessment tools have not considered cultural issues for this population. We aimed to adapt an existing supportive care needs assessment tool for use with Indigenous Australians with cancer. Methods: Face-to-face interviews with Indigenous cancer patients (n = 29) and five focus groups with Indigenous key-informants (n = 23) were conducted to assess the face and content validity, cultural acceptability, utility and relevance of the Supportive Care Needs Survey - Short Form 34 (SCNS-SF34) for use with Indigenous patients with cancer. Results: All items from the SCNS-SF34 were shortened and changed to use more appropriate language (e.g. the word 'anxiety' was substituted with 'worry'). Seven questions were omitted (e.g. items on death and future considerations) as they were deemed culturally inappropriate or irrelevant and 12 items were added (e.g. accessible transport). Optional instructions were added before the sexual items. The design and response format of the SCNS-SF34 was modified to make it easier to use for Indigenous cancer patients. Given the extensive modifications to the SCNS-SF34 and the liklihood of a different factor structure we consider this tool to be a new tool rather than a modification. The Supportive care needs assessment tool for Indigenous people (SCNAT-IP) shows promising face and content validity and will be useful in informing services where they need to direct their attention for these patients. Conclusions: Indigenous people with cancer have language, customs and specific needs that are not accommodated within the standard SCNS-SF34. Our SCNAT-IP improves acceptability, relevance and face validity for Indigenous-specific concerns. Our SCNAT-IP will allow screening for supportive care needs that are specific to Indigenous cancer patients' and greatly inform targeted policy development and practice.

Development of the palliative care needs assessment tool (PC-NAT) for use by multi-disciplinary health professionals

Needs assessment strategies can facilitate prioritisation of resources. To develop a needs assessment tool for use with advanced cancer patients and caregivers, to prompt early intervation. A convenience sample of 103 health professionals viewed three videotaped consultations involving a simulated patient, his/her caregiver and a health professional, completed the Palliative Care Needs Assessment Tool (PC-NAT) and provided feedback on clarity, content and acceptability of the PC-NAT. Face and content validity, acceptability and feasibility of the PC-NAT were confirmed. Kappa scores indicated adequate inter-rater reliability for the majority of domains; the patient spirituality domain and the caregiver physical and family and relationship domains had low reliability. The PC-NAT can be used by health professionals with a range of clinical expertise to identify individuals' needs, thereby enabling early intervention. Further psychometric testing and an evaluation to assess the impact of the systematic use of the PC-NAT on quality of life, unmet needs and service utilisation of patients and caregivers are underway.

How stable is the well-being of Australian mothers who care for young children with special health care needs?

Ninety-seven percent of children who have special health care needs are cared for by their mothers. These mothers cite that their informal care work can be intrinsically rewarding, however, the role is not without substantial difficulties and consequences. We investigated differences in the health and well-being of mothers whose young children do and do not have special health care needs. Quantitative data are drawn from Growing Up in Australia: The Longitudinal Study of Australian Children. This study employs a matched-case control methodology to compare the experiences of a group of 292 mothers whose children are identified as having long term special health care needs to those mothers whose children are typically developing at two time points; Wave 1 (2004) and Wave 3 (2008). The findings support previous research that mothers of children with special health care needs have poorer general health and mental health than mothers whose children do not have special needs. Mothers of children with special health care needs also perceived life as more difficult. Longitudinally, this study also shows that maternal well-being remains relatively stable during the years when children are transitioning to formal schooling. Implications for policy makers, practitioners and early childhood professionals are discussed.

Measuring child work and residence adjustments to parents' long-term care needs

This article estimates the effects of various parent and child characteristics on the choice of care arrangement of the parent, taking into account the potential endogeneity of some of the child characteristics. Three equations are estimated: a care choice equation, a child location equation, and a child work equation. Results suggest a hierarchy of family decision making; child locations affect the care decision, which affects child work decisions. The results also question previous research attempting to explain causes of secular trends in long-term care.

Prevalence, predictors, and correlates of supportive care needs among women 3–5 years after a diagnosis of endometrial cancer

Purpose The purpose of this study is to examine the prevalence, sociodemographic and clinical predictors, and physical and psychosocial correlates of unmet needs among women 3–5 years following treatment for endometrial cancer. Methods Women with endometrial cancer completed a survey around the time of diagnosis and again 3–5 years later. The follow-up survey asked women about their physical and psychosocial functioning and supportive care needs (CaSUN). Multivariable-adjusted logistic regression identified the predictors and correlates of women’s unmet needs 3–5 years after diagnosis. Results Of the 629 women who completed the cancer survivors’ unmet needs measure (CaSUN), 24 % (n = 153) women reported one or more unmet supportive care needs in the last month. Unmet needs at 3–5 years post-diagnosis were predicted by younger age (OR = 4.47; 95 % CI: 2.09–9.56) and advanced disease stage at diagnosis (OR = 2.47; 95 % CI: 1.38–4.45) and correlated with greater cancer symptoms (OR = 1.78; 95 % CI: 1.05–3.02), lower limb swelling (OR = 2.50; 95 % CI: 1.51–4.15), symptoms of anxiety (OR = 2.21; 95 % CI: 1.31–3.72), and less availability of social support (OR = 3.42; 95 % CI: 1.92–6.11). Women with a history of comorbidities (OR = 0.47; 95 % CI: 0.27–0.82) and those living in a rural area at the time of diagnosis (OR = 0.56; 95 % CI: 0.34–0.92) were less likely to report unmet needs. Conclusions Sociodemographic, health, and psychosocial factors seem important for identifying women who will or will not have unmet needs several years following endometrial cancer. Longitudinal assessments of people’s needs over the course of their cancer trajectory may be an effective way to identify areas that should receive further attention by health providers.

Incidence, risk factors and estimates of a woman's risk of developing secondary lower limb lymphedema and lymphedema-specific supportive care needs in women treated for endometrial cancer

Objectives: Few studies have assessed the risk and impact of lymphedema among women treated for endometrial cancer. We aimed to quantify cumulative incidence of, and risk factors for developing lymphedema following treatment for endometrial cancer and estimate absolute risk for individuals. Further, we report unmet needs for help with lymphedema-specific issues. Methods: Women treated for endometrial cancer (n = 1243) were followed-up 3–5 years after diagnosis; a subset of 643 completed a follow-up survey that asked about lymphedema and lymphedema-related support needs. We identified a diagnosis of secondary lymphedema from medical records or self-report. Multivariable logistic regression was used to evaluate risk factors and estimates. Results: Overall, 13% of women developed lymphedema. Risk varied markedly with the number of lymph nodes removed and, to a lesser extent, receipt of adjuvant radiation or chemotherapy treatment, and use of nonsteroidal anti-inflammatory drugs (pre-diagnosis). The absolute risk of developing lymphedema was > 50% for women with 15 + nodes removed and 2–3 additional risk factors, 30–41% for those with 15 + nodes removed plus 0–1 risk factors or 6–14 nodes removed plus 3 risk factors, but ≤ 8% for women with no nodes removed or 1–5 nodes but no additional risk factors. Over half (55%) of those who developed lymphedema reported unmet need(s), particularly with lymphedema-related costs and pain. Conclusion: Lymphedema is common; experienced by one in eight women following endometrial cancer. Women who have undergone lymphadenectomy have very high risks of lymphedema and should be informed how to self-monitor for symptoms. Affected women need greater levels of support.

Maternal employment, work experiences, and financial well-being of Australian mothers who care for young children with special health care needs

The employment and work experiences of mothers who care for young children with special health care needs is the focus of this study. It addresses a gap in the research literature, by providing an understanding of how mothers’ caring role may affect employment conditions, family life, and financial well-being. Quantitative data are drawn from Growing Up in Australia: The Longitudinal Study of Australian Children. The current study employs a matched case–control methodology to compare the experiences of a group of 292 mothers whose children (aged 4-5 years) with long-term special health care needs with those mothers whose children were typically developing. There were few differences between the two groups with regard to job characteristics and job quality. There were significant differences between the two groups with regard to work–family balance. Fewer mothers with children with special health care needs reported work having a positive effect on family functioning.

Psychometric properties of an Australian supportive care needs assessment tool for Indigenous patients with cancer

BACKGROUND There are significant disparities in cancer outcomes between Indigenous and non-Indigenous Australians. Identifying the unmet supportive care needs of Indigenous Australians with cancer is imperative to improve their cancer care. The purpose of this study was to test the psychometric properties of a supportive care needs assessment tool for Indigenous Australian (SCNAT-IP) cancer patients. METHODS The SCNAT-IP was administered to 248 Indigenous Australians diagnosed with a range of cancer types and stages, and received treatment in one of four Queensland hospitals. All 39 items were assessed for ceiling and floor effects and analysed using exploratory factor analysis (EFA) to determine construct validity. Identified factors were assessed for internal consistency and convergent validity to validated psychosocial tools. RESULTS EFA revealed a four-factor structure (physical and psychological, hospital care, information and communication, and practical and cultural needs) explaining 51% of the variance. Internal consistency of four subscales was good, with Cronbach Alpha reliability coefficients ranging from 0.70-0.89. Convergent validity was supported by significant correlations between the SCNAT-IP with the Distress Thermometer (r=0.60, p<0.001), and The Cancer Worry Chart (r=0.58, p<0.001) and a moderately strong negative correlation with Assessment of Quality of Life questionnaire (r=-0.56, p<0.001). CONCLUSION These data provide initial support for the SCNAT-IP a measure of multiple supportive care needs domains specific to Indigenous Australian cancer patients undergoing treatment.