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.

The educational pipeline for health care professionals : understanding the source of racial differences

The underrepresentation of blacks in the healthcare professions may have direct implications for the health outcomes of minority patients, underscoring the importance of understanding movement through the educational pipeline into professional healthcare careers by race. We jointly model individuals' postsecondary decisions including enrollment, college type, degree completion, and choosing a healthcare occupation requiring an advanced degree. We estimate the parameters of the model with maximum likelihood using data from the NLS-72. Our results emphasize the importance of pre-collegiate factors and of jointly examining the full chain of educational decisions in understanding the sources of racial disparities in professional healthcare occupations.

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.

Provision of survivorship care for patients with haematological malignancy at completion of treatment: a cancer nursing practice survey study

Purpose Many haematological cancer survivors report long-term physiological and psychosocial effects, which persist far beyond treatment completion. Cancer services have been required to extend care to the post-treatment phase to implement survivorship care strategies into routine practice. As key members of the multidisciplinary team, cancer nurses’ perspectives are essential to inform future developments in survivorship care provision. Methods This is a pilot survey study, involving 119 nurses caring for patients with haematological malignancy in an Australian tertiary cancer care centre. The participants completed an investigator developed survey designed to assess cancer care nurses’ perspectives on their attitudes, confidence levels, and practice in relation to post-treatment survivorship care for patients with a haematological malignancy. Results Overall, the majority of participants agreed that all of the survivorship interventions included in the survey should be within the scope of the nursing role. Nurses reported being least confident in discussing fertility and employment/financial issues with patients and conducting psychosocial distress screening. The interventions performed least often included, discussing fertility, intimacy and sexuality issues and communicating survivorship care with the patient’s primary health care providers. Nurses identified lack of time, limited educational resources, lack of dedicated end-of-treatment consultation and insufficient skills/knowledge as the key barriers to survivorship care provision. Conclusion Cancer centres should implement an appropriate model of survivorship care and provide improved training and educational resources for nurses to enable them to deliver quality survivorship care and meet the needs of haematological cancer survivors.

Sharing of clinical data in a maternity setting: How do paper hand-held records and electronic health records compare for completeness?

Background Historically, the paper hand-held record (PHR) has been used for sharing information between hospital clinicians, general practitioners and pregnant women in a maternity shared-care environment. Recently in alignment with a National e-health agenda, an electronic health record (EHR) was introduced at an Australian tertiary maternity service to replace the PHR for collection and transfer of data. The aim of this study was to examine and compare the completeness of clinical data collected in a PHR and an EHR. Methods We undertook a comparative cohort design study to determine differences in completeness between data collected from maternity records in two phases. Phase 1 data were collected from the PHR and Phase 2 data from the EHR. Records were compared for completeness of best practice variables collected The primary outcome was the presence of best practice variables and the secondary outcomes were the differences in individual variables between the records. Results Ninety-four percent of paper medical charts were available in Phase 1 and 100% of records from an obstetric database in Phase 2. No PHR or EHR had a complete dataset of best practice variables. The variables with significant improvement in completeness of data documented in the EHR, compared with the PHR, were urine culture, glucose tolerance test, nuchal screening, morphology scans, folic acid advice, tobacco smoking, illicit drug assessment and domestic violence assessment (p = 0.001). Additionally the documentation of immunisations (pertussis, hepatitis B, varicella, fluvax) were markedly improved in the EHR (p = 0.001). The variables of blood pressure, proteinuria, blood group, antibody, rubella and syphilis status, showed no significant differences in completeness of recording. Conclusion This is the first paper to report on the comparison of clinical data collected on a PHR and EHR in a maternity shared-care setting. The use of an EHR demonstrated significant improvements to the collection of best practice variables. Additionally, the data in an EHR were more available to relevant clinical staff with the appropriate log-in and more easily retrieved than from the PHR. This study contributes to an under-researched area of determining data quality collected in patient records.

The role of affect in consumer evaluation of health care services

Health care services are typically consumed out of necessity, typically to recover from illness. While the consumption of health care services can be emotional given that consumers experience fear, hope, relief, and joy, surprisingly, there is little research on the role of consumer affect in health care consumption. We propose that consumer affect is a heuristic cue that drives evaluation of health care services. Drawing from cognitive appraisal theory and affect-as-information theory, this article tests a research model (N = 492) that investigates consumer affect resulting from service performance on subsequent service outcomes.

Improving wound management for residents in Residential Aged Care Facilities: National dissemination and implementation of the evidence based Champions for Skin Integrity Program

Overview The incidence of skin tears, pressure injuries and chronic wounds increases with age [1-4] and therefore is a serious issue for staff and residents in Residential Aged Care Facilities (RACFs). A pilot project funded in Round 2 of the Encouraging Best Practice in Residential Aged Care (EBPRAC) program by the then Australian Government Department of Health and Ageing found that a substantial proportion of residents in aged care facilities experienced pressure injuries, skin tears or chronic wounds. It also found the implementation of the evidence based Champions for Skin Integrity (CSI) model of wound care was successful in significantly decreasing the prevalence and severity of wounds in residents, improving staff skills and knowledge of evidence based wound management, increasing staff confidence with wound management, increasing implementation of evidence based wound management and prevention strategies, and increasing staff awareness of their roles in evidence based wound care at all levels [5]. Importantly, during the project, the project team developed a resource kit on evidence based wound management. Two critical recommendations resulting from the project were that: - The CSI model or a similar strategic approach should be implemented in RACFs to facilitate the uptake of evidence based wound management and prevention - The resource kit on evidence based wound management should be made available to all Residential Aged Care Facilities and interested parties A proposal to disseminate or rollout the CSI model of wound care to all RACFs across Australia was submitted to the department in 2012. The department approved funding from the Aged Care Services Improvement Healthy Ageing Grant (ACSIHAG) at the same time as the Round 3 of the Encouraging Better Practice in Aged Care (EBPAC) program. The dissemination involved two crucial elements: 1. The updating, refining and distribution of a Champions for Skin Integrity Resource Kit, more commonly known as a CSI Resource Kit and 2. The presentation of intensive one day Promoting Healthy Skin “Train the Trainer” workshops in all capital cities and major regional towns across Australia Due to demand, the department agreed to fund a second round of workshops focussing on regional centres and the completion date was extended to accommodate the workshops. Later, the department also decided to host a departmental website for a number of clinical domains, including wound management, so that staff from the residential aged care sector had easy access to a central repository of helpful clinical resource material that could be used for improving the health and wellbeing of their older adults, consumers and carers. CSI Resource Kit Upgrade and Distribution: At the start of the project, a full evidence review was carried out on the material produced during the EBPRAC-CSI Stage 1 project and the relevant evidence based changes were made to the documentation. At the same time participants in the EBPRAC-CSI Stage 1 project were interviewed for advice on how to improve the resource material. Following this the documentation, included in the kit, was sent to independent experts for peer review. When this process was finalised, a learning designer and QUT’s Visual Communications Services were engaged to completely refine and update the design of the resources, and combined resource kit with the goal of keeping the overall size of the kit suitable for bookshelf mounting and the cost at reasonable levels. Both goals were achieved in that the kit is about the same size as a 25 mm A4 binder and costs between $19.00 and $28.00 per kit depending on the size of the print run. The dissemination of the updated CSI resource kit was an outstanding success. Demand for the kits was so great that a second print run of 2,000 kits was arranged on top of the initial print run of 4,000 kits. All RACFs across Australia were issued with a kit, some 2,740 in total. Since the initial distribution another 1,100 requests for kits has been fulfilled as well as 1,619 kits being distributed to participants at the Promoting Healthy Skin workshops. As the project was winding up a final request email was sent to all workshop participants asking if they required additional kits or resources to distribute the remaining kits and resources. This has resulted in requests for 200 additional kits and resources. Feedback from the residential aged care sector and other clinical providers who have interest in wound care has been very positive regarding the utility of the kit, (see Appendix 4). Promoting Healthy Skin Workshops The workshops also exceeded the project team’s initial objective. Our goal of providing workshop training for staff from one in four facilities and 450 participants was exceeded, with overwhelming demand for workshop places resulting in the need to provide a second round of workshops across Australia. At the completion of the second round, 37 workshops had been given, with 1286 participants, representing 835 facilities. A number of strategies were used to promote the workshops ranging from invitations included in the kit, to postcard mail-outs, broadcast emailing to all facilities and aged care networks and to articles and paid advertising in aged care journals. The most effective method, by far, was directly phoning the facilities. This enabled the caller to contact the relevant staff member and enlist their support for the workshop. As this is a labour intensive exercise, it was only used where numbers needed bolstering, with one venue rising from 3 registrants before the calls to 53 registrants after. The workshops were aimed at staff who had the interest and the capability of implementing evidence-based wound management within their facility or organisation. This targeting was successful in that a large proportion (68%) of participants were Registered Nurses, Nurse Managers, Educators or Consultants. Twenty percent were Endorsed Enrolled Nurses with the remaining 12% being made up of Personal Care Workers or Allied Health Professionals. To facilitate long term sustainability, the workshop employed train-the-trainer strategies. Feedback from the EBPRAC-CSI Stage 1 interviews was used in the development of workshop content. In addition, feedback from the workshop conducted at the end of the EBPRAC-CSI Stage 1 project suggested that change management and leadership training should be included in the workshops. The program was trialled in the first workshop conducted in Brisbane and then rolled out across Australia. Participants were asked to complete pre and post workshop surveys at the beginning and end of the workshop to determine how knowledge and confidence improved over the day. Results from the pre and post surveys showed significant improvements in the level of confidence in attendees’ ability to implement evidence based wound management. The results also indicated a significant increase in the level of confidence in ability to implement change within their facility or organisation. This is an important indication that the inclusion of change management/leadership training with clinical instruction can increase staff capacity and confidence in translating evidence into practice. To encourage the transfer of the evidence based content of the workshop into practice, participants were asked to prepare an Action Plan to be followed by a simple one page progress report three months after the workshop. These reports ranged from simple (e.g. skin moisturising to prevent skin tears), to complex implementation plans for introducing the CSI model across the whole organisation. Outcomes described in the project reports included decreased prevalence of skin tears, pressure injuries and chronic wounds, along with increased staff and resident knowledge and resident comfort. As stated above, some organisations prepared large, complex plans to roll out the CSI model across their organisation. These plans included a review of the organisation’s wound care system, policies and procedures, the creation of new processes, the education of staff and clients, uploading education and resource material onto internal electronic platforms and setting up formal review and evaluation processes. The CSI Resources have been enthusiastically sought and incorporated into multiple health care settings, including aged care, acute care, Medicare Local intranets (e.g. Map of Medicine e-pathways), primary health care, community and home care organisations, education providers and New Zealand aged and community health providers. Recommendations: Recommendations for RACFs, aged care and health service providers and government  Skin integrity and the evidence-practice gap in this area should be recognised as a major health issue for health service providers for older adults, with wounds experienced by up to 50% of residents in aged care settings (Edwards et al. 2010). Implementation of evidence based wound care through the Champions for Skin Integrity model in this and the pilot project has demonstrated the prevalence of wounds, wound healing times and wound infections can be halved.  A national program and Centre for Evidence Based Wound Management should be established to: - expand the reach of the model to other aged care facilities and health service providers for older adults - sustain the uptake of models such as the Champions for Skin Integrity (CSI) model - ensure current resources, expertise and training are available for consumers and health care professionals to promote skin integrity for all older adults  Evidence based resources for the CSI program and similar projects should be reviewed and updated every 3 – 4 years as per NH&MRC recommendations  Leadership and change management training is fundamental to increasing staff capacity, at all levels, to promote within-organisation dissemination of skills and knowledge gained from projects providing evidence based training Recommendations for future national dissemination projects  A formal program of opportunities for small groups of like projects to share information and resources, coordinate activities and synergise education programs interactively would benefit future national dissemination projects - Future workshop programs could explore an incentive program to optimise attendance and reduce ‘no shows’ - Future projects should build in the capacity and funding for increased follow-up with workshop attendees, to explore the reasons behind those who are unable to translate workshop learnings into the workplace and identify factors to address these barriers.

"It broke our hearts": Understanding parents' lived experiences of their child's admission to an acute mental health care facility

This article reports the evaluative findings of an Early Psychosis Education Program (EPEP) designed to support parents caring for their child who was recently admitted to the psychiatric intensive care unit of an inpatient mental health care facility in Australia. The EPEP offered education on mental illness, treatment options, and medication, as well as information on the recovery model of care. The EPEP was facilitated by two RNs and was evaluated for educational effectiveness using a simple pre- and postevaluation questionnaire. The evaluation revealed two themes expressed by parents: "We didn't see it coming," and "Hopelessness and helplessness." The themes highlighted the parents' lack of mental health care knowledge prior to the EPEP, which had a significant impact on the parents' experiences and well-being. The evaluative findings highlighted a need for a nurse-led EPEP within the community. A community EPEP has the potential to strengthen the partnership between parents, families, and mental health service providers and to help with the provision of a recovery framework of care.

The respiratory health of urban Indigenous children aged less than 5 years: Study protocol for a prospective cohort study

Background Despite the burden of acute respiratory illnesses (ARI) among Aboriginal and Torres Strait Islander children being a substantial cause of childhood morbidity and associated costs to families, communities and the health system, data on disease burden in urban children are lacking. Consequently evidence-based decision-making, data management guidelines, health resourcing for primary health care services and prevention strategies are lacking. This study aims to comprehensively describe the epidemiology, impact and outcomes of ARI in urban Aboriginal and Torres Strait Islander children (hereafter referred to as Indigenous) in the greater Brisbane area. Methods/design A prospective cohort study of Indigenous children aged less than five years registered with a primary health care service in Northern Brisbane, Queensland, Australia. Children are recruited at time of presentation to the service for any reason. Demographic, epidemiological, risk factor, microbiological, economic and clinical data are collected at enrolment. Enrolled children are followed for 12 months during which time ARI events, changes in child characteristics over time and monthly nasal swabs are collected. Children who develop an ARI with cough as a symptom during the study period are more intensely followed-up for 28(±3) days including weekly nasal swabs and parent completed cough diary cards. Children with persistent cough at day 28 post-ARI are reviewed by a paediatrician. Discussion Our study will be one of the first to comprehensively evaluate the natural history, epidemiology, aetiology, economic impact and outcomes of ARIs in this population. The results will inform studies for the development of evidence-based guidelines to improve the early detection, prevention and management of chronic cough and setting of priorities in children during and after ARI.

Implementing improvements to health care services in the US

In a previous blog I was critical of the US health care system for not using cost-effectiveness information to plan their services. Today I’m going to talk about the implementation of innovation in health services, something the US does really well compared to Australia.

What do most Americans think of cost-effectiveness research in health care?

My impression is that explicit data on the cost-effectiveness of different health care services are not valued highly by US policy makers. An example is a recent decision to approve ipilimumab for the treatment of metastatic melanoma. The extra health benefit over standard treatment is 2.1 months in previously untreated patients and the cost is $120,000 for 4 doses. This is poor value for money. Had $120,000 been allocated to an intensive lifestyle modification programme for diabetes risk (Diabet Med. 2004 Nov;21(11):1229-36) then 67 years of life or 800 months could have been returned. A massive increase in health benefits for the same costs.