Journeys through illness: suffering and resilience

This chapter:
•  explores the notion of living with chronic illness as a journey;
•  explores the concepts of enduring and uncertainity as aspects of the
   suffering associated with living with chronic illness;
•  defines resilience
•  explores the ways in which people develop and use resilient strategies
    in the face of chronic illness;
•  describes survivorship as an outcome of resilience; and
•  discusses the role of nurses and other caring professionals in relation to
    supporting a person through their suffering, and to develop their resilience
    in the face of that suffering.

Overcoming the stigma of chronic illness: strategies for normalisation of a 'spoiled identity'

This paper addresses the concept of chronic illness as a socially constructed experience of stigma. The stigma of having a chronic illness affects the person's self-concept, capacity to adapt to the illness and the quality of his/her social networks. Social stigma is a delegitimising social process derived from both popular and medical views of chronic illness. Based on research into the coping strategies of a range of people with long-term, serious chronic illnesses, the paper argues that government health policies and services in Australia can best help people with chronic illness by supporting their self-help groups and community-based activities.

The psychological impact of a cancer diagnosis on families: the influence of family functioning and patients' illness characteristics on depression and anxiety

A diagnosis of cancer is a very stressful event for the patients and their families. Patients, partners and other family members can suffer from clinical levels of depression and severe levels of anxiety and stress reactions. The similarity in levels of distress between patients and partners and patients and offspring suggests that there are common factors that impact on families' distress levels. The current study examined levels of depression and anxiety in newly diagnosed adult patients (n = 48) and their adult relatives (n = 99). Family functioning and patients' illness characteristics were identified as factors that might impact on families' depression and anxiety. Results from multilevel models indicated that family functioning was important. Families that were able to act openly, express feelings directly, and solve problems effectively had lower levels of depression. Direct communication of information within the family was associated with lower levels of anxiety. Aside from differences anxiety due to cancer type, patients' illness characteristics appear to be risk factors in patients' but not relatives' depression and anxiety. The results from the current study suggest that researchers and clinicians need to be family-focused as cancer affects the whole family, not just the patient.

Multiple sclerosis and economic well being: role of health, age, and duration of illness

This study used quantitative and qualitative techniques to examine the role of health, age, and duration of illness among people with multiple sclerosis (MS) in their economic well-being. Participants were 113 adults (31 males and 82 females) with MS who lived in urban and rural regions of Australia. The results demonstrated that health and age had a significant impact on both the economic well-being and psychological adjustment of people who contract this disorder. Different health variables predicted different aspects of economic well-being. Fatigue was the major health variable that predicted costs of MS and economic pressure, with age also predicting economic pressure, whereas income levels were predicted by cognitive confusion and mobility problems. Duration of illness, gender, and urban/rural location were not significant predictors of the economic variables. These results demonstrate the importance of obtaining multiple measures of economic well-being, as well as a broad range of health-related measures, in determining the impact of MS on the economic well-being of people with this disorder.

Is the risk of illness through consuming vegetables irrigated with reclaimed wastewater different for different population groups?

The use of reclaimed wastewater for irrigation of horticultural crops is commonplace in many parts of the world and is likely to increase. Concerns about risks to human health arising from such practice, especially with respect to infection with microbial pathogens, are common. Several factors need to be considered when attempting to quantify the risk posed to a population, such as the concentration of pathogens in the source water, water treatment efficiency, the volume of water coming into contact with the crop, and the die-off rate of pathogens in the environment. Another factor, which has received relatively less attention, is the amount of food consumed. Plainly, higher consumption rates place one at greater risk of becoming infected. The amount of vegetables consumed is known to vary among ethic groups. We use Quantitative Microbial Risk Assessment Modelling (QMRA) to see if certain ethnic groups are exposed to higher risks by virtue of their consumption behaviour. The results suggest that despite the disparities in consumption rates by different ethnic groups they generally all faced comparable levels of risks. We conclude by suggesting that QMRA should be used to assess the relative levels of risk faced by groups based on divisions other than ethnicity, such as those with compromised immune systems.

The impact of chronic illness on relationships in early adulthood: a comparison study between healthy and arthritic young adults

While engaging in romantic relationships is regarded as a normative task during young adulthood, non-normative life events such as the emergence of chronic illness can mitigate against the successful negotiation of such tasks. Chronic illness brings with it a series of additional challenges and stressors to the realm of personal relationships that are thought to interrupt the development of normative interpersonal and intra-individual processes. However, few studies have examined how young adults faced with a chronic illness such as arthritis navigate romantic relationships and the consequences of illness and relationships on psychological adjustment. The aim of the study was to compare the relationship experiences of healthy young adults with those faced with arthritis. One hundred and nine young adults (M 23.01 years, SD 2.43) took part in the study. Of these participants 41 had been diagnosed with arthritis. A univariate MANOVA revealed arthritic young adults reported significantly more insecure attachment, lower levels of readiness for intimacy, and poorer relationship satisfaction compared to healthy young adults. Further correlational and regression analyses on the arthritic sample revealed psychological adjustment was related to arthritis severity, attachment and components of coping. Findings will be discussed in relation to attachment theory and coping processes.

Working mothers of children with chronic illness: narratives of working and caring

This paper reports the initial findings of an exploratory, qualitative study of the life and work of people who are working full-time and also caring for a child with chronic illness. The demands of such a lifestyle are significant. Respondents - all women - often reported 'doing-it-all' while constantly being frustrated and challenged in their mothering role.

Investigating socio-economic status and chronic illness: directions and dilemmas

In Australia, chronic illness is increasing being recognised as more important. Yet there is relatively little discussion of the nature of the role played by socio-economic status (SES) plays in its prevalence. This paper argues there are two effects of SES. The first is that lower SES can lead to an increase in chronic illness, as evidenced by a number of epidemiological studies. The second is that chronic illness can contribute to lower SES. Examples are provided of the different types of relationships. Difficulties associated with SES analyses and its relationship to chronic illness are discussed, and specific conditions such as HIV/AIDS are referred to as examples. In addition the work of Marmot on SES and chronic illness is drawn on. The authors identify a number of areas that require further research, and recommend that in studies of chronic illness, SES may be a contributing variable, and outcome, or both.

Towards ending the silence: working women as carers of children with chronic illness/disability

This research presents stories from Australian women who work and care for a child with a significant chronic illness or disability. The paper considers the theory of Silencing the Self (Jack, 1991) in relation to the reported experiences and behaviours of these women. We report three themes of Caring and Working: "Otherness", "Doing it All" - but "Wanting to Live a Normal Life". As in Jack's study, these women engaged in silencing of the self. However, we also observed other people contributing to their silence and, unlike the respondents in Jack's study, many of these women fought the silence and did not accept that their unhappy situations should continue. They sought a life where silencing may not have been necessary.

Work and recreational changes among people with neurological illness and their caregivers

Background. Progressive neurological illnesses alter the health and well-being of people who experience them, and frequently lead to changes in the activities of both patients and their carers.

Purpose. The current study investigated changes in work and recreational activities among people with four of these illnesses.

Method. In total, the following numbers of people with neurological illnesses and their carers participated in the study: 28 with multiple sclerosis; 27 with motor neurone disease; 31 with Parkinson's; and 24 with Huntingtons disease. In addition, 28 professionals who worked with these populations participated in the study. Individual interviews were conducted with each of the above respondents to determine the impact of the neurological illness.

Results. The results demonstrated a high level of agreement from each of the participants. Most of the people with the illnesses and many of the carers had reduced their level of paid work. Generally, all groups of respondents perceived these changes as being negative. Changes in recreational activities were also seen to be primarily negative.

Conclusions. These results are discussed in terms of proposed prevention and intervention programmes to prepare patients and their carers for the changes that result from the neurological illness, strategies to stay at work longer and to help them develop alternative strategies to assist them in filling the gap left in their lives that was previously occupied by paid work.

Attachment bonding and the receipt of care in the face of chronic illness

The relationship between social support and the mental health outcomes of chronic illness sufferers is regarded as complex with inconsistent findings across studies. More recently, researchers have argued that that these inconsistencies may be explained by attachment theory. In this preliminary study, we explored how attachment bonds with three distinct attachment figures – parents, best friends and romantic partners influenced arthritic young adults’ seeking of care. Forty-one arthritis sufferers aged between 18 and 33 years were administered an online questionnaire which included measures of attachment and the receipt of emotional and instrumental care. Significant differences were found in young adults’ attachment avoidance and anxiety ratings, and seeking of instrumental care across parents, best friends and romantic partners. These differences were associated with differences in the frequency and type of care received by young arthritis sufferers across the three attachment figures. Furthermore, arthritis severity was associated with the receipt of care from attachment figures however this relationship was partially mediated by attachment anxiety.