Living with a Rare Chronic Illness: A Phenomenological, Systemic Examination of Hemophilia Complicated by an Inhibitor

Robinson, W. David; Jones, Adam; McPhee, Douglas P.

doi:10.1080/01926187.2019.1708831

Cited by 2 publications

(3 citation statements)

References 34 publications

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“…The chronic illness literature is abundant, with studies revealing how one's life is disrupted by a chronic illness, especially if a chronic illness forces a person to drastically alter one's way of life. [33][34][35][36] Biographical disruption, or the feeling that there was a break in one's planned life continuity related to roles and identity, 37 and feeling trapped by systemic sclerosis were strong feelings conveyed by many of the participants. This and other studies have revealed the connection between a person's adaptation to the many changes necessary and their struggles with self-identity.…”

Section: Discussionmentioning

confidence: 99%

“…Much of the recent literature exploring identity appears to be related to gender, sexual identity, and marginalized individuals. [39][40][41][42] There continues to be an abundant amount of recent research exploring the connection between the psychological impact related to a chronic illness 34,36,[43][44][45] ; however, there continues to be a paucity of research specifically addressing the connection between identity and chronic illness, including systemic sclerosis.…”

Section: Discussionmentioning

confidence: 99%

“…The chronic illness literature is abundant, with studies revealing how one’s life is disrupted by a chronic illness, especially if a chronic illness forces a person to drastically alter one’s way of life. 33-36…”

Section: Discussionmentioning

confidence: 99%

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Process of Maintaining Self in Individuals Living With Systemic Sclerosis: A Grounded Theory Study of American Women

Miller,

Doering

2023

West J Nurs Res

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Background: People with chronic illnesses may struggle to adapt psychologically to the illness experience and have feelings of identity loss, self-diminishment, and biographical disruption. This may limit people’s ability to engage in optimal self-management. Systemic sclerosis is a debilitating, stigmatizing, and life-limiting progressive chronic illness with significant disfiguring effects. Little is known about the identity management process in people with disfiguring and debilitating conditions such as systemic sclerosis. Purpose: The purpose of this study was to generate a grounded theory explicating the process of maintaining a sense of self in people living with systemic sclerosis. Methods: Fifteen women with systemic sclerosis were recruited to ensure representation of a range of illness duration and progression. Semi-structured interviews were conducted, transcribed, and analyzed using open, selective, and theoretical coding. Results: A basic social process of “maintaining self” was generated from the data that explained the women’s experience of living with systemic sclerosis and how they tried to hold on to their identity. Three core categories were identified. Adapting to changes are the behaviors that participants struggled through to carry on with their everyday lives. Dismantling of self was a distressing internal process where participants lost their sense of self and purpose. Restoring self was a transformative process that allowed participants to rewrite and rebuild their biographies. Conclusions: Findings suggest that the management of identity was important for understanding how people adapt to life with systemic sclerosis. This study can help nurses better understand how to support patients holistically with the management of systemic sclerosis.

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Section: Discussionmentioning

confidence: 99%

Section: Discussionmentioning

confidence: 99%

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Process of Maintaining Self in Individuals Living With Systemic Sclerosis: A Grounded Theory Study of American Women

Miller,

Doering

2023

West J Nurs Res

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Challenges and worries in life stories of women with bleeding disorders

Brondi¹,

Emiliani²,

Piscitelli³

et al. 2023

Psicologia Della Salute

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Women with bleeding disorders have rarely been studied. Recently, thanks to the advancement in treatment options and the recognition that women can also suffer from haemo-philia, new research lines have been developed. This study investigated the experiences of women affected by bleeding disorders (patients, healthy or symptomatic carriers), specifically focussing on disease diagnosis and management in daily life, relational issues, and reproductive options. Age, family history, educational qualification and religiosity were also considered. Thirty-two women were interviewed, and their narratives were analysed with lexical-metric and qualitative content analysis. The results showed some key themes, which refer to cognitive, affective and behavioural responses to the disease. They included both sex-neutral and female-specific contents, offering a new reading of the phenomenon. Although the aware-ness of female bleeding disorders has increased in recent years, sick women stressed late di-agnosis paths and symptom underestimations, while female carriers discussed psychosexual issues and motherhood choices, with related implications on physical and psychological well-being, and relational life. Alongside commonalities, some differences emerged depending on women's socio-cultural situations. Overall, they suggested the importance of developing early patient-centred psycho-educational paths in order to tailor interventions to specific women's needs, promote disease and self-acceptance, and enhance effective management.

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Living with a Rare Chronic Illness: A Phenomenological, Systemic Examination of Hemophilia Complicated by an Inhibitor

Cited by 2 publications

References 34 publications

Process of Maintaining Self in Individuals Living With Systemic Sclerosis: A Grounded Theory Study of American Women

Process of Maintaining Self in Individuals Living With Systemic Sclerosis: A Grounded Theory Study of American Women

Challenges and worries in life stories of women with bleeding disorders

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