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 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.

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.

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.

Working parents of children with chronic illness/disability: narratives of concern

This paper reports some initial findings of an exploratory, qualitative study of the life and work of people who are, concurrently, parents of a child with chronic illness/disability and working full time. The respondents of this study happen to be all women. Two emerging themes of interest are explored here. The first is a revisit of traditional notions of the abusive workplace, which seems to be of special interest when considering the plight of these women. Secondly, the numerous work and home demands on the working mother, especially the working mother of a child with chronic illness or disability. [twas unsurprising that these women reported extensive and multiple physical and emotional demands while trying to manage full time work with significant home and caring responsibilities. What is surprising is that these narratives of concern have not previously been explored, and should be.