People living with ALS/MND tell the diagnosis story : what happened before they knew

Background: Being told that one has a life threatening disease is shattering, but for some people it comes as a relief, following as it does the years of uncertainty and traumatic experiences that lead to diagnosis. The need to debrief the experience is paramount before the story of living with the disease can be told.
Objectives: The purpose of this paper is to describe the extended and often demoralising process of diagnosis for people with ALS/MND.
Methods: Grounded theory methodology was used to explore the life and world of people diagnosed and living with ALS/MND. Data were collected via in-depth interviews with 25 people with the disease, their stories and photographs, poems and books they identified as important, and field notes. The textual data were analysed using constant comparative analysis. All people who volunteered were included in the study. Many participants with communication challenges worked with the researcher to tell their stories.
Results: Participants recounted the processes they experienced prior to the time when they were finally given a reason for the perplexing behaviour of their bodies. The diagnosis story was revealed as a sequence of: ‘recognizing a problem’, ‘seeking medical help’, ‘being on the diagnostic roundabout’, ‘confirming ALS/MND’, ‘reevaluating life and the future’, then ‘living with ALS/MND’. Consequences included a loss of trust in the competence of the health care system, which had implications for seeking help later when living with the disease.
Discussion: Participant distress seemed to have more in common with the stress linked to post-traumatic stress disorder (PTSD). Participants continued to relive the diagnosis experience in their dreams and daily lives many months after diagnosis, which impacted negatively on their well-being. For this group of people, the diagnostic process itself was the traumatic stressor. It seemed that telling their stories gave them the opportunity to debrief and have their words recorded. Debrief support is recommended whenthe ALS/MND diagnosis is finalized, and continued, to prevent long-term reliving of the diagnostic process.
Conclusion: Health professionals continue to address the issues around the process of giving the ‘bad news’ of ALS/MND. This ‘diagnosis story’ may provide additional guidance in addressing the process so as to limit potential harm and promote well-being for people with the disease and their families.

The Victorian living with possums policy : a review

Possums in urban areas can cause problems for residents when they live in the roof cavity of homes. The Victorian Living With Possums policy was implemented by the Department of Natural Resources and Environment (DNRE) in 1997 to address the ineffective, illegal and inhumane nature of possum management practices. Human-possum conflicts in urban areas can be difficult to resolve, and it is therefore important that the Living With Possums policy is effectively reaching the community and other stakeholders (e.g. vets, local councils).

This study represents Stage 1 of a two-part research project that aims to examine community awareness of and compliance with the policy and relevant legislation. A pilot questionnaire was designed and distributed to a sample of individuals who have recently hired possum traps from local councils or private organisations within metropolitan Melbourne. Preliminary findings indicate that although there is some level of awareness about the Living with Possums policy, there is evidence of non-compliance and a lack of understanding about the detailed policy guidelines. In Stage 2 of this project, questionnaires will be distributed to a larger sample of individuals who are experiencing conflicts with possums in order to examine just how widespread this lack of compliance and awareness is.

Examining the living with possums policy in Victoria, Australia : community knowledge, support and compliance

Studying the human dimensions of wildlife management issues is now considered to be an essential component
of wildlife research. This study examined the Living with Possums policy in Victoria, Australia, in terms of the policy’s
success in educating the community and ensuring community compliance. Postal surveys and telephone interviews
were conducted across three samples from Greater Melbourne. These samples included people who had experiences
with possums on their property (n = 340), veterinary clinics (n = 45) and the general public (n = 103). Significant
levels of non-compliance were uncovered, highlighting the need for a renewed public education campaign to take place
along with a continued interest in this issue from government agencies and councils. The study also revealed
discrepancies between the policy and public preferences for possum management, suggesting that a shift in the
recommended management technique may be warranted.

Evaluation of a community-based mental health drug and alcohol nurse in the care of people living with HIV/AIDS

There is a growing need for advanced practice mental health and drug and alcohol nursing roles in the care of people living with HIV/AIDS; however, limited publications address these domains. This study evaluated a community-based mental health drug and alcohol nurse role caring for people living with HIV/AIDS (Mental Health D&A Nurse) in a large not-for-profit district nursing organization providing care to people living with HIV/AIDS in an Australian city. Outcomes from a client assessment and 6–8-week follow-up by the Mental Health D&A Nurse are presented as captured by the Depression Anxiety Stress Scales (DASS 21), Alcohol, Smoking and Substance Involvement Screening Test (ASSIST), Health of the Nation Outcome Scales (HONOS) and WHOQoL BREF. Mean scores and caseness were analysed, and significant differences were found on the 'impairment' and 'social problems' subscales of the HONOS. Results of semi-structured interviews with clients describe effective and supportive mental health care and health-promoting education following visits by the Mental Health D&A Nurse. These positive findings support continuing implementation of the role within this community setting and indicate that even greater benefits will ensue as the role develops further. Findings are of interest to clinicians and policy makers seeking to implement similar roles in community-based HIV/AIDS care.

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.

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.

Victims of violence among indigenous mothers living with dependent children

Objective: To identify individual and household factors associated with violence among Australian Indigenous women with dependent children.

Design and participants: Univariate and multivariable analysis of data from the 2002 National Aboriginal and Torres Strait Islander Social Survey, stratified by area.

Main outcome measure: Self-reported experience of being a victim of violence in the previous year.

Results: One in four Indigenous women living with dependent children younger than 15 years reported being victims of violence in the previous year; this corresponds to an estimated 24 221 Indigenous mothers (95% CI, 21 507–26 935) nationwide. Violence was more prevalent in regional areas and cities than remote areas. In remote areas, mothers who had been removed from their natural families during childhood had nearly threefold greater odds of being victims of violence (odds ratio [OR], 2.90; 95% CI, 1.82–4.61); in non-remote areas, the odds were 72% greater (OR, 1.72; 95% CI, 1.23–2.39). Older maternal age (≥ 45 years) was associated with lower odds of experiencing violence in both non-remote areas (OR, 0.39; 95% CI, 0.25–0.60) and remote areas (OR, 0.46; 95% CI, 0.30–0.70). Women with partners residing in the household faced lower odds of violence in both non-remote areas (OR, 0.54; 95% CI, 0.41–0.72) and remote areas (OR, 0.46; 95% CI, 0.32–0.67).

Conclusions: The prevalence of violence against Indigenous mothers with young children is alarmingly high across remote and non-remote areas. This study identified distinctive characteristics of victims, but further research is needed to assess potential risk factors, such as history of removal from natural family.

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.

Living with Dungalah (Murray River) : the case study of an environmental issue in Australia

This research is a case study of Dungalah, a river Europeans call the Murray which describes and accounts for the past, present and future experiences of Indigenous and non-Indigenous communities in their protection, use and management of the Dungalah and its surrounding land. It provides a snapshot of the experiences of the researcher, her family, friencds and the Yorta Yorta people, living with Dungalah.

Living with multiple sclerosis

The model was tested using a scale specially designed to assess the impact and symptoms of MS. Results indicate that people with MS manage better when self-esteem, optimism, physical activity, and social support are present. Therapists should promote these factors, among people with MS, to foster resilience and reduce its impact.