What are the special needs of chronically ill young people?

Although significant advances have been made in the treatment of serious disease, there remains much scope for assisting young people in adjusting to life with a chronic medical condition. Commonly, chronically ill young people experience lower emotional well being than their healthy peers. Conventional approaches to promoting emotional well being have involved referring young people and their families to an appropriate public mental health service or psychologist/psychiatrist in private practice. However, there is increasing interest in the use of peer support programs. Support groups such as the ChIPS program aim to promote positive adjustment to chronic illness by bring together young people facing similar circumstances. It is maintained that by increasing connections between chronically ill young people, emotional well being can be enhanced.

Issues concerning the on-going care of patients with comorbidities in acute care and post-discharge in Australia: a literature review

Issues concerning the on-going care of patients with comorbidities in acute care and post-discharge in Australia: a literature review

Background. Advances in medical science and improved lifestyles have reduced mortality rates in Australia and most western countries. This has resulted in an ageing population with a concomitant growth in the number of people who are living with chronic illnesses. Indeed a significant number of younger people experience more than one chronic illness. Large numbers of these may require repeated admissions to hospital for acute or episodic care that is superimposed upon the needs of their chronic conditions.

Aim. To explore the issues that circumscribe the complexities of caring for people with concurrent chronic illnesses, or comorbidities, in the acute care setting and postdischarge.

Methods. A literature review to examine the issues that impact upon the provision of comprehensive care to patients with comorbidities in the acute care setting and postdischarge.

Findings. Few studies have investigated this subject. From an Australian perspective, it is evident that the structure of the current health care environment has made it difficult to meet the needs of patients with comorbidities in the acute care setting and postdischarge. This is of major concern for nurses attempting to provide comprehensive care to an increasingly prevalent group of chronically ill people.

Conclusion. Further research is necessary to explore how episodic care is integrated into the on-going management of patients with comorbidities and how nurse clinicians can better use an episode of acute illness as an opportunity to review their overall management.

Towards ending the silence: working women caring for children with chronic illness

This paper presents stories from women who work and care for a child with a significant chronic illness or disability. The purpose of this paper is to move towards ending the silence on their lives. A three-phase emergent research design responds to the question: What is life like for a full-time worker who is concurrently the primary carer of a chronically ill child? This paper considers the theory of Silencing the Self (Jack, 1991) in relation to the emergent themes of “Otherness” and “Doing it All.” As in Jack’s study, these women also engaged in silencing of the self. However, unlike the respondents in Jack’s study, these women did not demonstrate feelings of worthlessness and hopelessness for the future, nor were they alone in contributing to their silence. Indeed, many experienced silencing behaviors from others around them, and many rallied against the silence, not accepting that their burden should continue. Consideration of Jack’s theory is made to point out the distinctions between the women in this study and Jack’s study, and analytical commentary is provided to demonstrate the relevance of this analysis in light of the current debates surrounding the Work–Home Conflict and the rising levels of informal care provided by women in our communities.

The role of peer support in facilitating psychosocial adjustment to chronic illness in adolescence

This article describes a Chronic Illness Peer Support (ChIPS) programme designed to assist young people in their adjustment to life with a chronic medical condition. The ChIPS programme takes a non-categorical approach to participation, recognizing that young people with different medical conditions experience many similar concerns. Support groups are facilitated by a health professional and peer co-leader. Groups meet weekly for 8 weeks and typically include between six and eight young people. Young people can choose to remain involved in broader social, educational and recreational activities following completion of the 8-week programme. We discuss nine psychosocial mechanisms by which peer support groups such as ChIPS might act to improve resilience and well-being among participants. We also discuss some theoretical risks in running support groups for chronically ill young people, which emphasize the importance of training and support of group leaders, including the peer co-leaders. The article concludes with a personal testimony by a ChIPS participant that was prepared for the 2003 Australian and New Zealand Adolescent Health Conference.

The mother-daughter guilt dynamic : effects of type 1 diabetes during life transitions

Aim. The aim of the study was to explore and describe the strategies young women with type 1 diabetes used to manage life transitions. The paper describes one aspect of how guilt dynamic often operates between mothers and daughters and how the women managed the guilt dynamic to create stability in their lives.
Background. When a child is diagnosed with diabetes, major transitional changes occur in the relationships between the mother and her child. The changes affect the psychological and social aspects of their lives and have a major impact on how young women manage their diabetes. A guilt dynamic between mothers and young women with diabetes emerged as a major theme in a larger study that investigated how young women with diabetes managed life transitions. Although the literature indicates that mothers of chronically ill children experience guilt feelings towards their children, little research was identified that addressed the emotional dynamics between mothers and daughters with diabetes.
Design. Using grounded theory method, interviews were conducted with 20 women with type 1 diabetes and five mothers during 2002 and 2003. Constant comparative analysis was used to analyse the data and develop an in-depth understanding of the experience of living with diabetes during life transitions.
Findings. The findings revealed that guilt feelings created a two-way dependency between mothers and their daughters with diabetes. The two-way dependency involved feelings of being a burden to each other, difficulty balancing responsibilities for diabetes management, difficulty relinquishing emotional and social dependency especially during life transitions. In addition, these issues were rarely discussed openly with each other or with health professionals. The findings provide additional information about the human experience of the mother–daughter relationship and the effect on coping with diabetes in the context of life transitions.
Conclusions. Understanding the impact diabetes has on the emotional and social well being of both women with type 1 diabetes and their mothers is critical in planning appropriate support for both groups. Most importantly, it is critical to understand the guilt dynamic that operates during young women with diabetes' life transitions when the daughters' dependency on their mother's control and responsibility for diabetes management undergo changes resulting in emotional responses, especially guilt feelings.
Relevance to clinical practice. Health professionals need to understand the emotional and social impact of the guilt dynamics between young women with type 1 diabetes and their mothers. Adequate and appropriate support can minimize the guilt feelings and enhance stability and quality of life for both mothers and their daughters, especially during major life transitions, such as motherhood.

Motivational interviewing in the prevention and management of chronic disease : improving physical activity and exercise in line with choice theory

Discusses the relationship between motivational interviewing and choice theory in working with chronically ill clients/patients.

Quality of life assessment in the community-dwelling elderly : validation of the Assessment of Quality of Life (AQoL) instrument and comparison with the SF-36

Measurement of Health-Related Quality of Life (HRQoL) of the elderly requires instruments with demonstrated sensitivity, reliability, and validity, particularly with the increasing proportion of older people entering the health care system. This article reports the psychometric properties of the 12-item Assessment of Quality of Life (AQoL) instrument in chronically ill community-dwelling elderly people with an 18-month follow-up. Comparator instruments included the SF-36 and the OARS. Construct validity of the AQoL was strong when examined via factor analysis and convergent and divergent validity against other scales. Receiver Operator Characteristic (ROC) curve analyses and relative efficiency estimates indicated the AQoL is sensitive, responsive, and had the strongest predicative validity for nursing home entry. It was also sensitive to economic prediction over the follow-up. Given these robust psychometric properties and the brevity of the scale, AQoL appears to be a suitable instrument for epidemiologic studies where HRQoL and utility data are required from elderly populations.

Rural women's self-management of arthritis

Assesses the relevance of self-management for rural women suffering arthritic conditions, by identifying factors that enabled or constrained their ability to self-manage, and by discerning differences between women in terms of their capacities to utilise self-management. A typology was developed identifying four different groups of rural women: unconstrained, passive, determined, and marginalised; therefore highlighting the ways in which different types of women are enabled or constrained in their self-management.

Homeostatic mechanism : subjective quality of life and chronic pain

Investigates the maintenance of subjective quality of life in the presence of chronic pain. A homeostatic mechanism is proposed and examined in terms of the roles of the suggested components and how these are altered by the threat of chronic pain.

All around Patrick

With the help from the RCH Education Institute which supports students with health conditions, Patrick Mackenzie, who has cystic fibrosis, is able to attend primary school.

Rural health systems change

Much effort has been expended in recent years attempting to reform the Australian health system in order to deliver more efficient and effective systems of care for an ageing and increasingly chronically ill population. Rural health care systems in particular have been a focus of reform programs, and new initiatives such as University Departments of Rural Health, Regional Health Service structures and Commonwealth primary care initiatives have been designed to improve service provision and health status for rural people. However, with these attempts to reform the way rural communities understand and manage their health care, surprisingly little has changed in the day-to-day business of health care in rural and regional areas. Paradoxically, while rural communities have moved to embrace new farming technologies and environmental perspectives along with modern land management practices, revegetation and sustainable production systems, the same enthusiasm for change does not appear to have been kindled in relation to health system reforms. Rural communities, in terms of health care, are still using the equivalent of outmoded farming practices and other environmentally and economically unsustainable approaches to managing their affairs. Why might this be and what can be done to improve the current state of health reform in our rural and regional areas? The paper explores systems change in relation to health reform in rural communities and highlights several strategies for bringing about a functional synthesis of research and health service practice to create a more effective health care system in rural South Australia.

Sisyphus and self-management : the chronic condition self-management paradox

Chronic condition self-management is promoted internationally as not only a possible solution to the health problems of our increasingly chronically ill and ageing population, but as part of a new wave of consumer-led and volunteer-managed health care initiatives. Consumers are now indicating that they want to be more involved in the management of their lives and their health care options, while, especially in rural and smaller communities in Australia, a shortage of clinicians means that health care is rapidly changing. This emphasis on self-management raises crucial questions about where consumer action and control in health care should end and where clinical and medical intervention might begin. Hence, as in the case of Sisyphus and his rock, the self-management process is a difficult and demanding one that poses major challenges and loads for health system reformers and represents a struggle in which new difficulties are constantly emerging. This paper examines some implications of new self-management approaches to chronic illness from an ideological perspective and highlights key elements that underpin the effort to promote health-related lifestyle change. While peer-led self-management programs may assist certain individuals to live engaged and meaningful lives, the essential social and economic determinants of health and wellbeing mean that these programs are not the answer to our urgent need for major reform in the health care arena. Rather, self-management, from an ideological perspective, represents a minor adjustment to the fabric of our health system.

Ageing well, ageing productively : the essential contribution of Australia's ageing population to the social and economic prosperity of the nation

In Australia we have become preoccupied with the potential adverse impact of our ageing population on our health and social systems. The projected cost of having increasing proportions of our population in the over 70s, retired, chronically ill category of the demographic profile is emerging as a major challenge for governments and private insurers: so much so in fact that the government is now urging older people to stay at work longer. In America, new approaches to the management and self-management of chronic diseases have been invoked to encourage and support older people to improve their quality of life and reduce their recourse to and dependence upon health care technologies, clinical interventions and health care management systems. Unless this is achieved, it is argued, the cost of looking after this emerging ‘bubble’ of elderly people will become increasingly unsustainable as fewer and fewer (proportionately) younger people work to pay the taxes that support ageing, retired, sick and dependent populations. This paper argues that we are at real risk of having our economic wealth and productivity impeded and truncated by the financial burden of looking after high demand and high cost dependants at the aged end of the social demographic. This paper offers an alternative view of our ageing population, as well as highlighting some of the assets we have in our elderly populations, and providing suggestions as to an alternative view of the phenomenon of ageing that incorporates elements such as flexible working arrangements and the application of new, enabling technologies. This approach to our ageing population dilemma is predicated on a concept of lifelong learning and social participation along with better preventive and early intervention systems of health care

Accompanying critically ill relatives in emergency departments

Background. Family members are a crucial part of the holistic approach to care in emergency departments. In particular, they are a group who are vulnerable, yet have been overlooked when considering care options.

Aim. The primary aim of this systematic review was to appraise research relevant to identifying and meeting the needs of family members who accompany a critically ill person into the Emergency Department (ED). The information was intended to inform future research into the care of these people.

Method. A quality assessment strategy was specifically developed to evaluate the various research designs used. The outcomes of the highest quality studies were used to develop evidence-based clinical practice guidelines to inform clinicians caring for family members who accompany a critically ill person into the ED.

Results. Recommendations for family care drawn from this review provide the foundation for more rigorous methodologies in future research into this topic. Key findings concern family needs for communication, proximity, support, comfort, assurance and to locate meaning in the event.

Conclusion. The review has revealed current knowledge about the care of family members who accompany a critically ill person into the ED that provides guidelines for practice. Despite significant limitations, the knowledge can lead to recommendation to guide and inform future intervention research.