A longitudinal study of economic pressure among people living with a progressive neurological illness

Objectives: Previous research has examined costs associated with progressive neurological illnesses, but has not examined predictors of economic pressure, or quality of life (QOL). The aim of the current study was to examine the predictors of both economic pressure and QOL among people with a range of progressive neurological illness.

Method: Participants were 257 people with motor neurone disease, Huntington’s disease, multiple sclerosis and Parkinson’s.

Results: High levels of cut backs in spending predicted economic pressure for all groups. Economic pressure predicted QOL at 12-month follow-up for all groups except Parkinson’s. For Parkinson’s, predictors of QOL were long duration of illness, illness-related expenses and cut backs in spending. Cut backs in spending, and not income or expenses, were the most important predictor of economic pressure. QOL was predicted by high levels of economic pressure for most of the illness groups.

Discussion: The implications of these findings are discussed. They suggest that cut backs in spending, as opposed to income and expenses, are important factors to focus on assisting people to adjust to the changes to their financial situation that frequently occurs after developing one of these progressive neurological illnesses.

A longitudinal study of quality of life among people living with a progressive neurological illness

This study investigated predictors of quality of life (QOL) of people with progressive neurological illnesses. Participants were 257 people with motor neurone disease (MND), Huntington’s disease (HD), multiple sclerosis (MS), or Parkinson’s. Participants completed questionnaires on two occasions, 12 months apart. There was an increase in severity of symptoms for people withMND, negative mood for people with HD and Parkinson’s, and social support satisfaction for people with MS. Regression analyses were conducted to determine predictors of QOL for each group. Predictor variables were length of illness, symptoms (physical symptoms, control over body, cognitive symptoms and psychological symptoms), mood, relationship satisfaction and social support. Predictors of QOL were severity of symptoms for people withMND, HD and MS; negative mood for people withMNDand Parkinson’s; and social support satisfaction for people with MS. These results demonstrate the importance of illness severity and mood in predicting QOL, but also indicate differences between illness groups. The limited role played by social support and relationship is a surprising finding from the current study.

Australian women`s experiences of living with hepatitis C virus: results from a cross-sectional survey

Background: Of the estimated 160 000 Australians currently infected with the hepatitis C virus (HCV), over one-third are women and very few have received clinical treatment, with most managing their illness in non-specialist settings. Little is known about the experiences of women living with HCV in the general community. The present study provides the results from the first comprehensive social survey of Australian women's experiences of living with HCV.

Methods: In 2000, a questionnaire was administered to a largely non-clinical sample of women with HCV (n = 462) living in the state of Victoria and the Australian Capital Territory, Australia. The questionnaire was self-administered with a return rate of 75%. The mean age was 35 years and 83% were 'current' or 'past' injecting drug users. The mean time since diagnosis was 4.6 years (SD = 4.0) and the mean time since infection was 10.5 years (SD = 8.2).

Results: Fifty-eight percent of women reported experiencing symptoms related to their HCV, the most common being tiredness (78%) and nausea (44%). Of the sample, 56% currently saw a doctor for their HCV, and while 52% had ever been referred to a specialist, only 17% of the total sample had ever begun interferon-based combination or monotherapy. Forty-eight percent of women reported experiencing less favorable treatment by a health professional because of their HCV. Age-related self-assessed health status was significantly lower than Australian norms, as were SF-12 physical and mental health scores. The SF-12 physical and mental health scores were highly correlated, indicating a significant physical and mental health burden associated with HCV.

Conclusion: The social, physical and mental health needs of women living with HCV are considerable. Most women had not accessed specialist treatment and the response of the primary health care system to HCV-related women's health issues requires improvement.

The experiences of living with a person with an eating disorder: the impact on the carers

Using a combination of focus groups and individual in-depth interviews, the experience of living with a person with an eating disorder was explored in 24 carers. Attention was given to the progression of the disorder to understand its impact upon the family throughout the stages of the illness. Caring for a person with an eating disorder impacted upon the primary carer and the family throughout the course of the illness. Despite this, the impact on the carers was seldom acknowledged and the needs of these carers and their families were unrecognized and neglected by health professionals.

Living with amyotrophic lateral sclerosis/motor neurone disease (ALS/MND) : decision-making about 'ongoing change and adaptation

Aims and objectives. To present a model that explicates the dimensions of change and adaptation as revealed by people who are diagnosed and live with amyotrophic lateral sclerosis/motor neurone disease.

Background. Most research about amyotrophic lateral sclerosis/motor neurone disease is medically focused on cause and cure for the illness. Although psychological studies have sought to understand the illness experience through questionnaires, little is known about the experience of living with amyotrophic lateral sclerosis/motor neurone disease as described by people with the disease.

Design. A grounded theory method of simultaneous data collection and constant comparative analysis was chosen for the conduct of this study.

Methods. Data collection involved in-depth interviews, electronic correspondence, field notes, as well as stories, prose, songs and photographs important to participants. QSR NVivo 2® software was used to manage the data and modelling used to illustrate concepts.

Findings. Participants used a cyclic, decision-making pattern about 'ongoing change and adaptation' as they lived with the disease. This pattern formed the basis of the model that is presented in this paper.

Conclusion. The lives of people living with amyotrophic lateral sclerosis/motor neurone disease revolve around the need to make decisions about how to live with the disease progression and their deteriorating abilities. Life decisions were negotiated by participants to maintain a sense of self and well-being in the face of change.

Relevance to clinical practice. The 'ongoing change and adaptation' model is a framework that can guide practitioners to understand the decision-making processes of people living with amyotrophic lateral sclerosis/motor neurone disease. Such understanding will enhance caring and promote models of care that are person-centred. The model may also have relevance for people with other life limiting diseases and their care.

Negotiating life choices : living with motor neurone disease

Motor neurone disease (MND) is an uncommon neurodegenerative disease that is terminal and has an insidious onset. With no known cause or cure, the disease triggers progressive death of motor neurones that causes increasing difficulties with mobility, communication, breathing and nutrition. Most research focuses on the disease process, but little is known of the illness experience from the perspective of those diagnosed with the disease. The aim of this study was to explore what it is like to live with MND and how people with the disease negotiate with others to exercise choice over the way they live. A grounded theory methodology was used to explore the life world of people diagnosed and living with MND. Data were collected via in-depth interviews, their stories and photographs, poems and books participants identified as important and fieldnotes. The textual data were analysed using constant comparative analysis. The majority of participants experienced difficulty with verbal communication. Some invited a third person to interpret their speech and others used assistive technologies such as Lightwriters and computers. Analysis revealed three constructs that, together, told the story of the MND illness experience. First, was the “diagnosis story” that described the devastating process of repeated tests had on the participants, shattering their trust in the competence of the health care system. The second construct revealed the process of living with MND as cyclical and repetitive requiring constant decision-making to adapt to the ongoing changes connected with the disease. The core theme and basic social process of “maintaining personal integrity” evolved as the third construct. This process underpinned and explained participants’ decision-making. Finally a substantive theory was conceptualised as the illness experience: “maintaining personal integrity in the face of ongoing change and adaptation”. This theory illustrates that the basic social process of maintaining personal integrity is central to decision and choice making while living with MND. The findings have implications for people with MND, their carers, health professionals and service providers. Recommendations include improved counselling services for people at the time of diagnosis; the introduction of nurse specialists to support health professionals, people diagnosed with the disease and their families; open, accessible, realistic health and funding policies.

Living with cancer : an ethnographic study of Thai cancer patients

This thesis is an ethnographic investigation aimed at describing the lived experiences of Thai cancer patients residing in Cancer Hostel, a shelter provided for the needy whilst undergoing radiation treatment at Siam Hospital. All names, including the hospital, the shelter, and all respondents have been altered to preserve anonymity. The practice of withholding the true diagnosis from Thai patients meant that very little was known about their own feelings on cancer and its treatment. That, coupled with entrenched medical practice beliefs, presented an unusual challenge, for which an ethnographic research method was advocated as being most appropriate in helping toward a better understanding of the problem and resolving the existing dilemma. To understand the real experiences of Thai cancer patients, it was extremely important that the researcher get as near as possible to becoming one of them. Therefore, by physically 'being with’, establishing rapport, and gaining patients trust, the researcher was assured of acceptance as an insider, and was thus allowed to share the experiences of their life encounters. Research findings graphically illustrated the flaws in the practice of protecting patients from their diagnosis, who almost universally, wanted to know more about their diagnosis in order to seek help from the medical care system. Towards this, patients created meaning by linking folk beliefs, culturally inherited knowledge and a common sense, albeit naive approach in trying to make sense of their illness and treatment. Although patients saw cancer illness and its treatment, especially radiotherapy, as life threatening, it was the fear of radiation treatment, not cancer illness which turned patients away from medical treatment. As well, uncertainty, fear and frustration through the lack of information and involvement in their treatment saw patients employ strategies of both reciprocal and fatalistic acceptance; stoic resistance; and thinking positively in their efforts at coping with those life threatening situations.

Hope of a nation - experiences of social exclusion giving rise to spaces of inclusion for people living with HIV and AIDs in South Africa : a reflection

South Africa has one of the highest rates of HIV/AIDS in the world. No one particular group is affected by the virus – rather, it is indiscriminate. Responses to HIV are diverse, and can be starkly contradictory. This author lived among the Xhosa people in rural Eastern Cape, working in community development. The program was a population-based youth empowerment program around HIV prevention. The work involved engaging youth in a range of civic participation activities, and networking with other community based groups and organisations, health and social services, and government departments. This reflection out a narrative of the lived experiences of social exclusion and social connectedness for people living with HIV/AIDS in rural Eastern Cape. It draws out the paradox of how the high prevalence of stigma and discrimination towards those with the illness, and their subsequent experience of social exclusion, actually creates opportunities for social connectedness through support group participation. This in turn is fashioning an emerging social movement breaking down barriers of stigma, and contributing to broader social change to support HIV action.

The reflection begins by outlining the current context and underlying determinants of the proliferation of HIV in the Eastern Cape, including a discussion of exclusion as a determinant. An exploration of how exclusion is also experienced as an outcome of positive HIV status follows. Finally, an explanation of how the experience of exclusion can be transformed into spaces of connectedness, and implications for health promotion practice in this context is also presented.

Australians living with and managing hepatitis C

This paper discusses the psychosocial impact of being diagnosed with hepatitis C virus (HCV). The paper clarifies some of the key misconceptions about the virus, especially the impact HCV has on people who have been recently diagnosed. An individual's reaction to the HCV diagnosis and the subsequent lifestyle challenges to maintain health, well-being, family, and social networks are discussed, particularly the issues surrounding mental health in respect to a recent chronic illness diagnosis and how to manage the trajectory of the illness in the community and individually. HCV disclosure and its effect on intimacy are also detailed.

For people living with both a diagnosed mental illness and HCV, managing the illness can be complicated. Not only are these individuals concerned about their mental illness, its treatment, and the social stigma and discrimination associated with it, they also may be alarmed over their future physical health. The paper is preliminary to research using the psychotherapeutic approach of Cognitive Behavioural Therapy (CBT) in groups of persons with a dual diagnosis of mental illness and HCV.

Learning to take charge : women's experiences of living with endometriosis

This paper describes aspects of a study that was conducted to determine women's needs for information related to laparoscopy for endometriosis. Sixty-one women attended focus groups, during which they described endometriosis as a disease of multiple losses: of relationships, of career and of a sense of self-worth. The women indicated that the pathway to diagnosis and treatment had been long and unnecessarily difficult. Many women said that they had reached a point where they decided enough was enough: the medical merry-go-round had to finish. They had to become assertive, take control and decide for themselves how they were going to manage their disease and their quality of life. For all but one woman in the study, complementary therapies were vital. For some women, alternative therapies had replaced allopathic medicine completely. Complementary/alternative therapies were a mechanism for regaining control.

Screening Michael Jackson's face : reading Martin Bashir's living with Michael Jackson

The screening of Martin Bashir's Living with Michael Jackson on Australian television elicited a phenomenal amount of interest in the news media, at water coolers and on the Internet. Much of the response in the Australian print media was critical of Bashir's representation of Jackson, as well as denouncing Jackson as sad victim, warped predator and allround freakshow. This article considers these interpretations to argue that the production and consumption of 'wacko Jacko' is underpinned by the increasing instability of the natural in an age of information technologies, as well as the collapse of boundaries between documentary and fictional entertainment forms.