Managing the self: living with an indwelling urinary catheter.

AIMS: This paper reports the findings of a study that aimed to understand the perspectives of community dwelling adults' who lived with a permanently indwelling urinary catheter. The objectives of the research were to: reveal the participants' perspective of living in the community with a permanent indwelling urinary catheter, raise awareness of the experiences of catheterized men and women and to inform community nursing practice. BACKGROUND: Catheter care is a common nursing intervention. Clinical Nurse Consultants (CNCs) with a focus on continence drove this inquiry because it was believed that Community Nurses may underestimate the impact that a permanently indwelling catheter may have on peoples' lives. DESIGN: Structured interviews were undertaken with twelve men and nine women (n = 21), aged between 24 and 82 years and who had a permanently indwelling catheter (either urethral or supra pubic) for longer than six months. Analysis of the interview transcripts was a collaboration between the researchers and clinicians. RESULTS: The most significant finding was that participants wanted to learn urinary catheter self-care as this allowed them to take control and gave relevance to their daily life. Data revealed a learning pattern consisting of seven interrelated themes as people have learned to self-manage: (i) resisting the intrusion of a catheter, (ii) reckoning with the need for a catheter, (iii) being vigilant for signs of problems, (iv) reconciling between the needs of self and others, (v) reclaiming life, (vi) managing self-care, and (vii) taking control. CONCLUSIONS: We do not suggest that people undergo a straightforward path toward catheter self-care, rather, that the seven interactive themes we have identified may be useful for observation in nursing practice whilst sensitizing nurses to clients' experiences of living with a catheter. RELEVANCE TO CLINICAL PRACTICE: Promoting self-care of a catheter is not simply about educating clients about their condition or giving them relevant information. It is intrinsically a learning process, observing responses to every day events, such as the identification of the different sounds and sensations that may alert the individual to a full catheter bag, urine that has stopped flowing or signs of impending infection.

The salience of the body: transition in sexual self-identity for women living with multiple sclerosis.

AIM: The purpose of this paper is to outline understandings about the construction of sexuality and the impact of a changing body for women living with multiple sclerosis (MS). We suggest that the process of transition towards incorporating the experience of chronic illness into one's life is influenced by the (re)construction of self-identity. DESIGN AND METHODS: A participatory action process guided the research. The women joined the authors for five group sessions that totalled 15 hours of contact time. In addition, we offered women the opportunity for one-to-one interviews at home. Nine women volunteered to participate. This allowed us to gain additional in-depth data about individual experiences. The interpretive framework was guided by the self-identity literature. When reading the transcripts we questioned: What is going on here? What does this say about the construction of self? What does this say about the construction of identity? What influence does the body have in the construction of self-identity? Analysis was collaborative (with the women) and the resultant emerging construction of sexuality is shared in this paper. Data generated during one-to-one interviews are privileged and we include two accounts from women who live with MS. The women's stories focus on sexuality, however, within this sexual context, we observed shifts in self-identity which we contend may shape the illness transition experience. FINDINGS: The rationale for privileging only two accounts is to expand understanding of Ordinariness and Extraordinariness with particular focus on the salience of the body in the 'sexual' lives of the women. Self-identity was shaped by how they felt about themselves as sexual beings, how they experienced their body, how they felt about sexual activities and by the way others reacted to them. Importantly, we view the women's sense of self, identity and the relationship to the body and find that shifts in self identity shape the woman's transition towards Ordinariness. CONCLUSIONS: This exploration of illness experiences is a reminder that our bodies are vehicles for our sense of self and identity. Cultural, educational, social, religious and family contexts all impact on women's capacity to shape the consequences of illness and the choices available to them. Facilitating women towards an awareness of the choices available in order to sustain or reclaim self may in turn expedite transition towards Ordinariness so that illness may become a part of their life.

Constructions of sexuality for women living with multiple sclerosis.

AIM: In this paper we reveal constructions of sexuality that were articulated by 12 women who participated in an inquiry, which aimed to understand the experiences of women who live with multiple sclerosis (MS). The aim of this paper is to consider constructions of sexuality when chronic illness such as MS intervenes. BACKGROUND: In previous studies women placed their sexuality on the agenda for discussion, claiming that their concerns had not previously been vocalized nor understood. DESIGN: This participatory inquiry was framed by the principles of 'look, think and act'. These principles are operationalized as looking at ourselves, reflecting and questioning aspects of our lives, and then taking action to resolve the issues identified. Twelve women aged between 30 and 60 years who lived with MS joined the three researchers for five group sessions. Each session lasted 3 hours. In addition, several women opted to be interviewed individually. In this paper we describe the way in which women have constructed and articulated their sexuality since acquiring MS. FINDINGS: Sexuality has multiple meanings that are shaped and influenced by life experiences. When MS intrudes in a woman's life, sexuality is reshaped against a foundation of previous sexual experiences and expectations. Constructions of sexuality encompassed physical sexual responses, perceptions of appearance and attractiveness to self and others, communication and relationships, self-image and self-esteem, and the sense of affirmation and acknowledgement that women experienced from others in their everyday lives. CONCLUSIONS: This paper reveals that sexuality was not privileged by women but was regarded as an ordinary part of life. Often sexual activity was placed on hold as other aspects of living with a chronic illness intervene, for instance an exacerbation of MS. Whilst this paper has a focus on constructions of sexuality, there is a close relationship to shifts in self and identity. Health professionals need to reject the myths and stereotypes surrounding disabled women and attempt to understand the possible impact of long-term illness on women's sexuality.

Compromising and containing: self-management strategies used by men and women who live with multiple sclerosis and urinary incontinence.

This study aimed to expose the experiences of men and women living with Multiple Sclerosis (MS) and how they manage the challenge of urinary incontinence in their lives. We explore the commonalities and diversities between men and women living with MS and urinary incontinence and conclude the paper by making recommendations for nursing practice.