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.

Quality of work life among primary health care nurses in the Jazan region, Saudi Arabia : a crosssectional study

Background: Quality of work life (QWL) is defined as the extent to which employee is satisfied with personal and working needs through participating in the workplace while achieving the organisation’s goals. QWL has been found to influence the commitment and productivity of employees in healthcare organisations, as well as in other industries. However, reliable information on the QWL of PHC nurses is limited. The purpose of this study was to assess the QWL among PHC nurses in the Jazan region, Saudi Arabia. Methods: A descriptive research design, namely, a cross-sectional survey was used in this study. Data were collected using Brooks’ survey of quality of nursing work life (QNWL) and demographic questions. A convenience sample was recruited from 143 PHC centres in Jazan, Saudi Arabia. The Jazan region is located in the southern part of Saudi Arabia. A response rate of 91% (N = 532/585) was achieved (effective RR = 87%, n = 508). Data analysis consisted of descriptive statistics, t-test and one way-analysis of variance. Total scores and sub-scores for QWL Items and item summary statistics were computed and reported, using SPSS version 17 for Windows. Results: Findings suggested that the respondents were dissatisfied with their work life. The major influencing factors were unsuitable working hours/shifts, lack of facilities for nurses, inability to balance work with family needs, inadequacy of family-leave time, poor staffing, management and supervision practices, lack of professional development opportunities, and inappropriate working environment in terms of the level of security, patient care supplies and equipment, and recreation facilities (Break-area). Other essential factors include the community’s view of nursing and inadequate salary. More positively, the majority of nurses were satisfied with their co-workers, satisfied to be nurses and had a sense of belonging in their workplaces. Significant differences were found according to gender, age, marital status, dependent children, dependent adults, nationality, ethnicity, nursing tenure, organisational tenure, positional tenure, and payment per month. No significant differences were found according to education level and location of PHC. Conclusions: These findings can be used by PHC managers and policy makers for developing and appropriately implementing successful plans to improve the QWL. This will help to enhance the home and work environments, improve individual and organisation performance and increase nurses’ commitment.

What if you're really different? Case studies of children with high functioning autism participating in the Get REAL programme who had atypical learning trajectories.

Evaluation of the Get REAL programme in an inclusive primary school setting has indicated its effectiveness in promoting pro-social behaviour for children with high functioning Autism. However, two children with co-morbid diagnoses and complex personal circumstances showed less consistent improvements. In order to explain their unique trajectories, not readily derived from quantitative studies, an exploratory case study approach was used to examine contextual influences on patterns of progress. Multiple data sources included coded video footage from the Get REAL programme, school reports on conduct, and parents and classroom teacher reports using the Strengths and Difficulties Questionnaire. While results provide support for the efficacy of the Get REAL programme for the two children, they also highlight the value of co-ordinated strategies and collaborative individualised approaches in more complex cases. This paper outlines the Get REAL intervention and a range of other school and support agency strategies impacting progress.

Thai family support (TFS) : working with families of young substance users in primary health care

Living with substance users negatively impacts upon family members in many ways, and distress is common. Despite these deep and wide-ranging impacts, supportive interventions for family members in their own right are rarely available. Thailand has substantial and growing problems with substance use, and there is very little support or family members of drug users, especially in community setting. The Thai Family Support (TFS) program was designed for implementation in primary health care units (PCUs) in Thailand. TFS was based on two approaches with existing empirical support in Western contexts—the 5-step method and CRAFT—with adaptations to a Thai setting that included integration with Buddhist practices. Its aims were to increase well-being of family members, reduce mental distress, improve family relationships between family members, and engage substance users in behaviour change. A small-scale randomised controlled trial on TFS with a Delayed Treatment control was conducted, with assessments at 8 weeks (Post 1) and 20-24 weeks (Post 2). Structured interviews with participants and PCU staff and an examination of five case studies augmented the quantitative results. Mixed Model Analyses were applied to quantitative outcomes, and thematic analysis was used for qualitative data. Thirty-six participants (18 in each of Immediate and Delayed Conditions) were recruited. A significant difference at Baseline between the two conditions was observed on the Thai GHQ-28 and Gender, but it was not possible to statistically control for these effects. There was a significant Time by Condition interaction on the Thai GHQ-28, WHOQOL-BREF-THAI and FAS, reflecting greater improvements in the Immediate condition by Post 1, but with the Delayed condition meeting or exceeding that effect by Post 2. On FES Cohesion and Conflict, there were falls across conditions at Post 2, but only Cohesion also showed a Time by Condition interaction, and that effect was consistent with a delayed impact of treatment. Overall, TFS by PCU staff in the Delayed Condition gave similar results to TFS conducted by the researcher, supporting the viability of its dissemination to standard health services. Qualitative data also confirmed the quantitative results. Most participants reported physiological and psychological improvements even though their substance-using relative did not change their drug use behaviour. After completing TFS, participants reported increased knowledge, group support and sharing feeling, having positive patient-professional relationship, having greater knowledge of substance abuse and social support. In particular, they changed their behaviour towards the substance user, resulting in improvements to family relationships. PCU staff gave similar responses on the efficacy of TFS, and saw it as feasible for routine use, although some implementation challenges were identified. The cultural adaptation and in particular the religious activities, were recognised by participants and PCU staff as an important component of TFS to support psychological health and well-being. Findings from this study showed the impact of substance use on family members and difficulties that they experienced when living with the substance users, resulting distresses and burden that may develop severe mental health disease. Drug use policies should be modified to support family members and response to their needs effectively for early prevention. This study also gave preliminary support for application of the TFS program in rural primary care settings and identified some policies that will be required for it to be disseminated more broadly.

P.I.C.U., H.D.U., A.O.A. What treatment do we provide?: Current descriptions of the function of intensive care for inpatient Psychiatric Health Care.

Purpose – This paper adds to growing research of psychiatric intensive care units (PICU) by recounting descriptions of psychiatric intensive care settings and discusses the perceptions held by nurses of the organisational interfaces, arrangements and provisions of care in these settings. Design/methodology/approach – Data gathered from focus groups held with nurses from two PICUs was used to establish terminology, defining attributes, related concepts, antecedents, values, processes and concepts related to current practices. A literature search was conducted to permit a review of the conceptual arrangements and contemporary understanding of intensive care for people experiencing acute psychiatric illness based on the perspectives held by the nurses from the focus groups. Findings – Dissonance between service needs and the needs and management of individual patients overshadow strategies to implement comprehensive recovery-oriented approaches. Three factors are reported in this paper that influence standards and procedural practice in PICU; organisational structures; physical structures; and subtype nomenclature. Practical implications – Acute inpatient care is an important part of a comprehensive approach to mental health services. Commonly intensive acute care is delivered in specialised wards or units co-located with acute mental health inpatient units mostly known as PICU. Evidence of the most effective treatment and approaches in intensive care settings that support comprehensive recovery for improved outcomes is nascent. Originality/value – Current descriptions from nurses substantiate wide variations in the provisions, design and classifications of psychiatric intensive care. Idiosyncratic and localised conceptions of psychiatric intensive care are not adequately entailing effective treatment and methods in support of recovery principles for improved and comprehensive outcomes. The authors suggest that more concrete descriptions, guidelines, training and policies for provision of intensive psychiatric health care encompassing the perspective of nursing professionals, would reinforce conceptual construction and thus optimum treatments within a comprehensive, recovery-oriented approach to mental health services.

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.

Building Healthy Communities : GP Network, Medicare Local and Primary Health Care in the Wheatbelt Region of Western Australia

• Government reports consistently recognise the importance of Primary Health Care to an efficient health system. Barriers identified in Australia’s Primary Health Care include workforce pressures, increase rate of chronic disease, and equitable access to Primary Health Care services. • General Practitioners (GPs) are the key to the successful delivery of Primary Health Care especially in rural and remote regions such as the Wheatbelt region in Western Australia (WA). • The Wheatbelt region of WA is vast: some 72,500 residents spread across 150,000km2 in 43 Local Government Authorities catchments. Majority of the Wheatbelt residents live in small towns. There is a higher reported rates of chronic disease, more at risk of chronic diseases and less utilisation of Primary Health Care services in this region. • General practice patients in the Wheatbelt are among those most in need of Primary Health Care services. • Wheatbelt GP Network (the “Network”) was established in 1998. It is a key health service delivery stakeholder in the Wheatbelt. • The Network has responded to the health needs of the community by creating a mobile Allied Health Team that works closely with GPs and is adaptive to ensure priority needs are met. • The Medicare Local model introduced by the Australian Government in 2011 aimed to improve the delivery of Primary Health Care services by improved health planning and coordinating service delivery. • Little if any recognition has been given to the outstanding work that many Divisions of General Practice have done in improving the delivery of Primary Health Care services such as the Network. • The Network has continued to support GPs and general practices and created a complementary system that integrated general practice with the work of an Allied Health Team. Its program mix is extensive. • The Network has consistently delivered on-required contract outputs and has a fifteen (15) years history of operating successfully in a large geographical area comprising in the main smaller communities that cannot support the traditional health services model. • The complexity of supporting International Medical Graduates in the region requires special attention. • The introduction of the Medicare Local in the South West of WA and their intention to take over the delivery of health services, thus effectively shutting the Network will have catastrophic consequences and cannot be supported economically. • The Network proposes to create a new model, built on its past work that increases the delivery of Primary Health Care services through its current Allied Health Team. • The proposal uses the Wheatbelt GP Super Clinic currently under construction in Northam, part of the Network and funded by the Australian Government is a key to the proposed new model. • Wheatbelt GP Super Clinic is different from existing models of GP Super Clinics around Australia which focus predominately on co-location of services. Wheatbelt GP Super Clinic utilises a hub and spoke model of service outreach to small rural towns to ensure equitable Primary Health Care coverage and continuum of care in a financially responsible and viable manner. In particular, the Wheatbelt GP Super Clinic recognises the importance of Allied Health Professionals and will involve them in a collaborative model with rural general practice. • The proposed model advocated by the Network aims to substitute the South West WA Medicare Local direct service delivery proposed for the Wheatbelt. The Network’s proposed model is to expand on the current hub and spoke model of Primary Health Care delivery to otherwise small unviable Wheatbelt towns. A flexible and adaptive skill mix of Allied Health Professionals, Nurse Practitioners and GPs ensure equitable access to service. Expanded scope of practices are utilised to reduce duplication of service and concentration of services in major towns. This involves a partnership approach. • If the proposed model not funded, the Network and the Wheatbelt region will stand to lose 16 Allied Health Professionals and defeats the purpose of Australian Government current funding for the construction of the Wheatbelt GP Super Clinic. • The Network has considered how its model can best be funded. It proposes a re-allocation of funds made available to the South West WA Medicare Local. • This submission argues that the proposal for the South West WA Medicare Local to take over the service delivery of Primary Health Care services in the Wheatbelt makes no economic sense when an existing agency (the Network) has the infrastructure in place, is experienced in working in this geographical area that has special needs and is capable to expand its programs to meet demand.

Factors associated with physical activity in children attending family child care homes

Objective To determine the relationship between family child care home (FCCH) practices and characteristics, and objectively measured physical activity (PA) among children attending FCCHs. Methods FCCH practices and characteristics were assessed in 45 FCCHs in Oregon (USA) in 2010-2011 using the Nutrition and Physical Activity Self-Assessment for Child Care Instrument. Within the 45 FCCHs, 136 children between ages 2 and 5. years wore an accelerometer during child care attendance over a one-week period. Time spent in light, moderate, and vigorous PA per hour was calculated using intensity-related cut-points (Pate et al., 2006). Results FCCH characteristics and practices associated with higher levels of PA (min/h; p < 0.05) included provision of sufficient outdoor active play [32.2 (1.0) vs. 28.6 (1.3)], active play using portable play equipment [31.7 (1.0) vs. 29.3 (1.4)], the presence of a variety of fixed play equipment [32.2 (1.0) vs. 28.9 (1.3)], and suitable indoor play space [32.2 (1.0) vs. 28.6 (1.3)], engaging in active play with children [32.1 (1.1) vs. 29.6 (1.2)], and receiving activity-related training [33.1 (1.2) vs. 30.3 (1.1)]. Conclusions This is the first study to identify practices and characteristics of FCCHs that influence children's PA. These data should be considered when developing programs and policies to promote PA in FCCHs.

Optimising the education and care experiences of children with 'difficult' temperament

This thesis asked whether more temperamentally reactive or difficult children are more sensitive to Early Childhood and Care (ECEC) environments than less reactive children. The aim was to assess what forms of ECEC provision best support more reactive children. The study analysed data from the national Effective Early Educational Experiences (E4Kids). Children with reactive temperament had less behavioural difficulties in classrooms with higher quality instruction but more when instructional quality was low. The findings underscore the importance of higher quality ECEC environments for temperamentally vulnerable children and the possibility that temperamentally reactive children are "barometers" of ECEC quality more generally.

The educational context and services of children with additional needs in their first years of school in Australia

In Australia, children with additional needs are now primarily educated in mainstream regular classes and schools. While discussion has focused on teacher attitudes, teacher preparation and professional development to support the academic progress of children with additional needs, there is limited research examining the educational contexts and services provided to such children in Australian schools. This descriptive paper examines the educational contexts of 563 Australian children with additional needs, in reference to 3600 of their typically developing peers. Data in relation to educational setting, retention, prevalence of additional needs, access to specialist services, learning support, and individual programming are reported.

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.

A tsunami of unmet needs: Pancreatic and ampullary cancer patients’ supportive care needs and use of community and allied health services

Objective People diagnosed with pancreatic cancer have the worst survival prognosis of any cancer. No previous research has documented the supportive care needs of this population. Our objective was to describe people’s needs and use of support services and to examine whether these differed according to whether or not patients had undergone surgical resection. Methods Queensland pancreatic or ampullary cancer patients (n=136, 54% of those eligible) completed a survey which assessed 34 needs across 5 domains (SCNS-SF34) and use of health services. Differences by resection were compared with Chi-squared tests. Results Overall, 96% of participants reported having some needs. More than half reported moderate-to-high unmet physical (54%) or psychological (52%) needs whereas, health system/information (32%), patient care (21%) and sexuality needs (16%) were described less frequently. The three most frequently reported moderate-to-high needs included ‘not being able to do things they used to do’ (41%), ‘concerns about the worries of those close’ (37%), and ‘uncertainty about the future’ (30%). Patients with non-resectable disease reported greater individual information needs but their needs were otherwise similar to patients with resectable disease. Self-reported use of support was low; only 35% accessed information, 28%, 18% and 15% consulted a dietician, complementary medicine practitioner or mental health practitioner, respectively. Palliative care access was greater (59% vs 27%) among those with non-resectable disease. Conclusion Very high levels of needs were reported by people with pancreatic or ampullary cancer. Future work needs to elucidate why uptake of appropriate supportive care is low and which services are required.

Systematic review: Unmet supportive care needs in people diagnosed with chronic liver disease

Objective People with chronic liver disease, particularly those with decompensated cirrhosis, experience several potentially debilitating complications that can have a significant impact on activities of daily living and quality of life. These impairments combined with the associated complex treatment mean that they are faced with specific and high levels of supportive care needs. We aimed to review reported perspectives, experiences and concerns of people with chronic liver disease worldwide. This information is necessary to guide development of policies around supportive needs screening tools and to enable prioritisation of support services for these patients. Design Systematic searches of PubMed, MEDLINE, CINAHL and PsycINFO from the earliest records until 19 September 2014. Data were extracted using standardised forms. A qualitative, descriptive approach was utilised to analyse and synthesise data. Results The initial search yielded 2598 reports: 26 studies reporting supportive care needs among patients with chronic liver disease were included, but few of them were patient-reported needs, none used a validated liver disease-specific supportive care need assessment instrument, and only three included patients with cirrhosis. Five key domains of supportive care needs were identified: informational or educational (eg, educational material, educational sessions), practical (eg, daily living), physical (eg, controlling pruritus and fatigue), patient care and support (eg, support groups), and psychological (eg, anxiety, sadness). Conclusions While several key domains of supportive care needs were identified, most studies included hepatitis patients. There is a paucity of literature describing the supportive care needs of the chronic liver disease population likely to have the most needs—namely those with cirrhosis. Assessing the supportive care needs of people with chronic liver disease have potential utility in clinical practice for facilitating timely referrals to support services.

Social adaptation of children with mild intellectual disability : effects of partial integration within primary school classes

Examined the social adaptation of 32 children in grades 3–6 with mild intellectual disability: 13 Ss were partially integrated into regular primary school classes and 19 Ss were full-time in separate classes. Sociometric status was assessed using best friend and play rating measures. Consistent with previous research, children with intellectual disability were less socially accepted than were a matched group of 32 children with no learning disabilities. Children in partially integrated classes received more play nominations than those in separate classes, but had no greater acceptance as a best friend. On teachers' reports, disabled children had higher levels of inappropriate social behaviours, but there was no significant difference in appropriate behaviours. Self-assessments by integrated children were more negative than those by children in separate classes, and their peer-relationship satisfaction was lower. Ratings by disabled children of their satisfaction with peer relationships were associated with ratings of appropriate social skills by themselves and their teachers, and with self-ratings of negative behaviour. The study confirmed that partial integration can have negative consequences for children with an intellectual disability.

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.