Developing a web-based information resource for palliative care : an action-research inspired approach

Background : General Practitioners and community nurses rely on easily accessible, evidence-based online information to guide practice. To date, the methods that underpin the scoping of user-identified online information needs in palliative care have remained under-explored. This paper describes the benefits and challenges of a collaborative approach involving users and experts that informed the first stage of the development of a palliative care website.

Method : The action research-inspired methodology included a panel assessment of an existing palliative care website based in Victoria, Australia; a pre-development survey (n = 197) scoping potential audiences and palliative care information needs; working parties conducting a needs analysis about necessary information content for a redeveloped website targeting health professionals and caregivers/patients; an iterative evaluation process involving users and experts; as well as a final evaluation survey (n = 166).

Results : Involving users in the identification of content and links for a palliative care website is time-consuming and requires initial resources, strong networking skills and commitment. However, user participation provided crucial information that led to the widened the scope of the website audience and guided the development and testing of the website. The needs analysis underpinning the project suggests that palliative care peak bodies need to address three distinct audiences (clinicians, allied health professionals as well as patients and their caregivers).

Conclusion : Web developers should pay close attention to the content, language, and accessibility needs of these groups. Given the substantial cost associated with the maintenance of authoritative health information sites, the paper proposes a more collaborative development in which users can be engaged in the definition of content to ensure relevance and responsiveness, and to eliminate unnecessary detail. Access to volunteer networks forms an integral part of such an approach.

Women's views of postnatal care in the context of the increasing pressure on postnatal beds in Australia

Background : Despite limited evidence evaluating early postnatal discharge, length of hospital stay has declined dramatically in Australia since the 1980s. The recent rising birth rate in Victoria, Australia has increased pressure on hospital beds, and many services have responded by discharging women earlier than planned, often with little preparation during pregnancy. We aimed to explore the views of women and their partners regarding a number of theoretical postnatal care ‘packages’ that could provide an alternative approach to early postnatal care.

Methods : Eight focus groups and four interviews were held in rural and metropolitan Victoria in 2006 with participants who had experienced a mix of public and private maternity care. These included 8 pregnant women, 42 recent mothers and 2 male partners. All were fluent in English. Focus groups explored participants’ experiences and/or expectations of early postnatal care in hospital and at home and their views of alternative packages of postnatal care where location of care shifted from hospital to home and/or hotel. This paper describes the packages and explores and describes what ‘value’ women placed on the various components of care.

Findings : Overall, women expressed a preference for what they had experienced or expected, which may be explained by the ‘what is must be best’ phenomenon where women place value on the status quo. They generally did not respond favourably towards the alternative postnatal care packages, with concerns about any shorter length of hospital stay, especially for first time mothers. Women were concerned about the safety and wellbeing of their new baby and reported that they lacked confidence in their ability to care for their baby. The physical presence and availability of professional support was seen to alleviate these concerns, especially for first time mothers. Participants did not believe that increased domiciliary visits compensated for forgoing the perceived security and value of staying in hospital. Women generally valued staying in hospital for the length of time they felt they needed above all other factors.

Key conclusions and implications for practice : Women were concerned about shortened postnatal length of hospital stay and these concerns must be considered when changes are planned in maternity service provision. Any moves towards shorter postnatal length of stay must be comprehensively evaluated with consideration given to exploring consumer views and satisfaction. There is also a need for flexibility in postnatal care that acknowledges women's individual needs.

A cost-based equity weight for use in the economic evaluation of primary health care interventions: case study of the Australian Indigenous population

Background : Efficiency and equity are both important policy objectives in resource allocation. The discipline of health economics has traditionally focused on maximising efficiency, however addressing inequities in health also requires consideration. Methods to incorporate equity within economic evaluation techniques range from qualitative judgements to quantitative outcomes-based equity weights. Yet, due to definitional uncertainties and other inherent limitations, no method has been universally adopted to date. This paper proposes an alternative cost-based equity weight for use in the economic evaluation of interventions delivered from primary health care services.

Methods : Equity is defined in terms of 'access' to health services, with the vertical equity objective to achieve 'equitable access for unequal need'. Using the Australian Indigenous population as an illustrative case study, the magnitude of the equity weight is constructed using the ratio of the costs of providing specific interventions via Indigenous primary health care services compared with the costs of the same interventions delivered via mainstream services. Applying this weight to the costs of subsequent interventions deflates the costs of provision via Indigenous health services, and thus makes comparisons with mainstream more equitable when applied during economic evaluation.

Results : Based on achieving 'equitable access', existing measures of health inequity are suitable for establishing 'need', however the magnitude of health inequity is not necessarily proportional to the magnitude of resources required to redress it. Rather, equitable access may be better measured using appropriate methods of health service delivery for the target group. 'Equity of access' also suggests a focus on the processes of providing equitable health care rather than on outcomes, and therefore supports application of equity weights to the cost side rather than the outcomes side of the economic equation.

Conclusion : Cost-based weights have the potential to provide a pragmatic method of equity weight construction which is both understandable to policy makers and sensitive to the needs of target groups. It could improve the evidence base for resource allocation decisions, and be generalised to other disadvantaged groups who share similar concepts of equity. Development of this decision-making tool represents a potentially important avenue for further health economics research.

What's needed to increase research capacity in rural primary health care

The aim of this study is to identify ways to build research capacity within primary health. A consultation was undertaken in late 2004 using a combination of a one-page survey and a guided meeting format, in a primary health setting in rural NSW. Most (81.3%) of the 134 individuals consulted were part of an Area Health Service, with 12.7% from non-government settings. Most (80.6%) were clinicians, with a third (31.5%) nurses, 8.3% in medicine, and the remainder from a range of allied health professions. Eleven organisations were represented. The main  outcome measures were identification of support needs, processes to enhance research engagement, and barriers and enablers to clinicians’ research  involvement. The results showed that popular delivery modes for research training and support were courses and “one-to- one” advice. Writing topics were generally more popular than others. Common barriers were time and technology issues. A key enabler was a discipline-specific focus. This is one of few rural Australian  consultations on research needs in primary health conducted with a diverse  range of clinicians at the clinician level. It will direct future research capacity  building efforts towards maximising face-to-face discipline specific options and  minimising technology use.

Cardiovascular health behaviours and health needs among people with psychiatric disabilities

Recent research in Australia has found that people with a mental illness experience higher mortality rates from preventable illnesses, such as cardiovascular disease, respiratory disease and diabetes compared to the general population. Lifestyle and other behavioural factors contribute significantly to these illnesses. Lifestyle behaviours that affect these illnesses include lack of physical activity, consumption of a poor diet and cigarette smoking. Research on the influence of these factors has been mainly directed towards the mainstream population in Australia. Consequently, there remains limited understanding of health behaviours among individuals with psychiatric disabilities, their health needs, or factors influencing their participation in protective health behaviours. This thesis presents findings from two studies. Study 1 evaluated the utility of the main components of Roger’s (1983) Protection Motivation Theory (PMT) to explain health behaviours among people with a mental illness. A clinical population of individuals with schizophrenia (N=83), Major Depressive Disorder (MDD) (N=70) and individuals without a mental illness (N=147) participated in the study. Respondents provided information on intentions and self-reported behaviour of engaging in physical activity, following a low-fat diet, and stopping smoking. Study 2 investigated the health care service needs of people with psychiatric disabilities (N=20). Results indicated that the prevalence of overweight, cigarette smoking and a sedentary lifestyle were significantly greater among people with a mental illness compared to that reported for individuals without a mental illness. Major predictors of the lack of intentions to adopt health behaviours among individuals with schizophrenia and MDD were high levels of fear of cardiovascular disease, lack of knowledge of correct dietary principles, lower self-efficacy, a limited social support network and a high level of psychiatric symptoms. In addition, findings demonstrated that psychiatric patients are disproportionately higher users of medical services, but they are under-users of preventive medical care services. These differences are primarily due to a lack of focus on preventive health, feelings of disempowerment and lower satisfaction of patient-doctor relationships. Implications of these results are discussed in terms of designing education and preventive programs for individuals with schizophrenia and MDD.

To integrate or not to integrate? Future considerations for chronic disease self-management programs in the health care system

Objective: The growing burden of chronic disease and the increasing realisation that the current health system is ill equipped to deal with this trend has resulted in a health policy shift away from the traditional medical model to a more patient centred approach. As such, chronic disease self-management programs (CDSMP) have emerged as a potentially important component within this approach. Policy and program trends at the international level highlight several critical factors that need to be considered by governments and health care providers alike if CDSMP are to be integrated within the broader health system. This study reviewed international and local policy literature and sought perspectives from key stakeholders to determine the value and potential for integrating a generic group-based CDSMP into the care continuum.
Method: Prominent self-management policies were identified through a comprehensive literature search. Interviews were conducted with policy makers across Australia (n=20), health practitioners (n=20) and consumers (n=42) purposefully recruited from metropolitan and rural Victoria, representing key demographics of interest including low socioeconomic areas.
Results: Whilst CDSMP were viewed as having significant potential to be integrated into the health sector it was identified that the delivery and content of CDSMP needs to be flexible in order to address the needs of people across the disease, age and care continuums. Critical issues to be addressed if CDSMP are to be successfully integrated include increasing the profile of self-management; actively engaging and training health practitioners in self-management and overcoming system barriers such as lack of integrated referral pathways and networks.
Discussion: Policy directions at the national level suggest that self-management will be a centrepiece in forthcoming chronic disease initiatives. International evidence has highlighted the requirement for a ‘suite’ of programs to adequately cater to different stages of the disease continuum, age groups, ethnic backgrounds and sociogeographical areas. Furthermore engagement with key stakeholders (particularly GPs) is identified as critical to ensure the successful integration of CDSMP into the health system.
Conclusion: Evidence suggests that CDSMP is an important facet in improving care of people with chronic conditions. Findings from this study suggest that current infrastructure and policy direction, which have been found to be critical factors in facilitating integration of CDSMP into the health sector, are either absent or inadequate in Victoria. CDSMPs are currently lacking a sustainable workforce, referral infrastructure and specific policy. Such factors need to be addressed before the integration of CDSMP can be considered across the healthcare continuum in Victoria.

"Not just for me" : researching rural needs through dialogue

Rural decline is a multi-faceted issue, one aspect of which is the difficulty experienced in attracting a range of professionals to rural areas. Counteracting rural decline and supporting the sustainability of local communities can be assisted by ensuring the presence of a diverse range of skills and professions in local towns and regions. While it is accepted that rural areas can never have the same level of servicing as cities, basic services such as primary health care are a fundamental need in any community.

Lesbian and gay experiences of primary care in one borough in North London, UK

This paper reports the findings of a research study which explored the experiences of lesbians and gay men in relation to primary care services in general practice in a multiracial borough in North London, UK. The research took a qualitative approach and used several methods including a literature review, interviews with stakeholders (n = 6), focus group discussions (n = 27) and completion (n = 42) of a survey distributed to lesbians and gay men locally. The process facilitated the development of a grounded theory. The important themes to emerge were finding a GP and coming out, sexual health issues, mental health issues and communication with the GP. Given the high level of mobility among this population, there were problems in maintaining continuity of care, and a lack of protocols to facilitate the sharing of knowledge between patients and practitioners while reducing reliance on heterosexual assumptions. There were clear differences between the treatment of women and men in relation to sexual health, and neither approach could be said to be patient centred or inclusive of diversity of need. The fact that many informants accessed alternative sources of healthcare indicated that they were concerned to promote and maintain their health and wellbeing in a holistic manner. The lack of transparent protocols within general practice inhibited some informants from being as open and honest about their sexuality with their GPs as they were with their families or their employers. The findings highlight (1) the need for organisational development within primary care to improve sensitivity to the needs of lesbians and gay men; (2) the value of research to engage with the social experiences of lesbians and gay men; (3) the importance of engaging with the differing experiences of lesbians and gay men in relation to sexual health concerns.

Psychosocial care of family of critically-ill patients in emergency departments

Responding to families with a critically ill relative is difficult for emergency department clinicians. This innovative research program used best evidence, integrated with perspectives from families and clinicians, to develop context specific guidelines and sensitive tools to assist emergency department clinicians provide quality psychosocial care to meet multidimensional family needs.

Hearing in athletes with intellectual disabilities : the need for improved ear care

Background The Special Olympics offer the opportunity for athletes with intellectual disabilities to participate in a range of sports at regional, national and international level. A parallel Healthy Athletes programme was introduced to ensure safety at the games but also to collect data on the health needs of those with intellectual disabilities (ID).

Method This study reports on the introduction of a hearing screen for the first time at national games in Great Britain. Given the availability of free local healthcare it was unclear whether the screen would simply duplicate services already accessed locally.

Results Of the 996 athletes who went though the hearing screen 40% were identified with a previously unrecognised hearing loss, 52% required medical ear care and 43% required wax removal. Despite complex competing stimuli within the screening area only 15 of the subjects were unable to complete the full screen. Local clinical services are carried out in more controlled environments therefore it is reasonable to presume that it would be possible for them to provide assessment of ear care and ongoing audiological assessments where needed. It was found that carers and sports coaches were generally unaware of the hearing needs of the athletes, in spite of the fact that they worked so closely with them.

Conclusions The importance of imparting information to carers and coaches, together with the need for access to regular ear care locally is underlined in this study.

Daring to Care : is spirituality sustainable in organizations providing healthcare?

Healthcare workers are challenged to dare to care enough to provide a service that is holistic. This involves being in tune with their own spirituality and the spiritual needs of their patients or clients. Spirituality and compassion are important concepts in the ministry of nurses and other health professionals. Compassion also has links with mercy, although there is debate as to whether mercy is the same as compassion for deserving or undeserving sufferers. However, healthcare workers need to care for sufferers even if their suffering is not deserved, where such compassion is intrinsic and/or out of duty. It involves acting altruistically. Faith-based organizations are best equipped to undertake this holistic ministry but as they are becoming increasingly reliant on government funding to help finance expensive health services they encounter rationalistic pressures from these funding sources may restrict the way they deliver these services. Decision and policymakers are encouraged to embrace altruistic values rather than the egoistic values of economic rationalism, not least because the nature of healthcare has an inherent emphasis on altruistic emotions, especially compassion.

Dialysis residential care : a future dialysis service model

People with chronic kidney disease are ageing and have increasing co-morbidities. The current delivery of renal replacement therapy, dialysis and transplantation, needs to adjust to changing patient needs. This paper proposes a potential future service delivery model featuring a dialysis residential care facility and a care coordination focus. The residential care facility would be composed of four levels of care; high, hostel, independent and outpatient. The paper argues that this model may result in decreased morbidity, improved patient quality of life and may prove cost effective. Patients' nutritional status, medication adherence and transport efficiency may be improved. We propose this model to stimulate further debate in order to meet the needs of current and future chronic kidney disease patients.

The ethics of care and treatment of sex offenders

The ethics of care acknowledges the importance of establishing and maintaining practices that help people to meet their needs, develop and protect basic capabilities for problem solving, emotional functioning, and social interaction, and avoid pain and suffering. In this article, we explore the contribution an ethics of care perspective can make to work with sex offenders. First, we briefly describe five classes of ethical problems evident in work with sex offenders. Second, the concept of care is defined and a justification for a version of care theory provided. Third, we apply the care ethical theory to ethical issues with sex offenders and demonstrate its value in responding to the five classes of problems outlined earlier.

Building equity in chronic disease management in Thailand : a whole-system provincial trial of systematic, pro-active chronic illness care

Thailand has a history of implementing innovative and proactive policies to address the health needs of its population. Since 1962 Thailand has implemented initiatives that led to it having a health system characterized by a primary care focus, decentralization and mechanisms to maximize equity and universal access to basic care at the local level. Thai health structures initially evolved to meet challenges including infectious and developmental diseases and later HIV. Early in the 21st century chronic illness rapidly became the greatest cause of morbidity and mortality and the question has arisen how Thailand can adapt its strong health system to deal with the new epidemics. This article describes an effort to reorient provincial health services to meet the needs of the increasing number of people with diabetes and heart disease. It describes measures taken to build on the equity-promoting elements of the Thai health system. The project included; a situational analysis, development and implementation of a chronic disease self-management intervention implemented by nurses and alignment of provincial health services. The self-management intervention is currently being evaluated within a clustered randomized control trial. The evaluation has been developed to fit with the focus on equity in relation to both selection criteria and the outcomes that are being assessed.