Understanding what is important for women who live with multiple sclerosis

In this pilot-project eight women with multiple sclerosis (MS), four Continence Nurse Advisers (CNAs) and one researcher formed a participatory action research (PAR) group. Ten group sessions were held in 1997. The CNAs found that 80 of their referrals for continence management were women with MS and they wanted to explore the way in which women manage their incontinence. Although the group was brought together to discuss incontinence, other emergent themes were raised by the women. These themes were: women's ad hoc experience with community services, their problems concerning access to toilets for the disabled, concern with health professionals' lack of knowledge about MS, their formidable experiences of hospitalisation and respite care admissions, their individual efforts in maintaining wellness in the context of chronic illness and the effect of MS on sexual relationships.     

We just don't talk about it: Men living with urinary incontinence and multiple sclerosis

For people with multiple sclerosis (MS), urinary incontinence can become central to their experiences of managing the consequences of the disease. The Research Unit at the Royal District Nursing Service in South Australia conducted a study between October and December 1998 that aimed to understand how people living with multiple sclerosis manage urinary incontinence. This paper reports the findings from a participatory action research group consisting of four men who lived with MS and urinary incontinence, two continence nurse advisors (CNA) and the researcher. Incontinence was found to be a subject that men had found difficult to talk about previously. Themes that emerged from the conversations with the men were: planning your life around toilets; today will not be the same as tomorrow; managing myself; and motivated to make changes. The men and the CNA experienced a valuable exchange of knowledge about living with incontinence. We consider it essential that the voices of these men are clearly heard so that health-care providers may be responsive and sensitive to their clients' needs.     

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.     

The experience of community-living women managing fecal incontinence

Although many women suffer from fecal incontinence (FI), little is known about their day-to-day experiences. The aims of this phenomenological study were to understand the experience of women living with FI from their perspective and to elicit women's self-care and management strategies for FI. Ten women participated in audiotaped, unstructured interviews that were transcribed into a written text. The text was analyzed using Van Manen's approach for deriving themes. The findings display the women's experience of lived time, lived space, lived relationships, and lived body and the essential theme of "controlling the body out of control." The findings demonstrate that FI is a problem that affects women in all dimensions of their lifeworld experience and describes the continual attention and self-management FI requires.     

女性尿失禁患者生活质量的评价及干预

目的 探讨尿失禁对女性生活质量的影响及改善其生活质量积极有效的措施。方法 分析患有尿失禁女性的生活质量评价及干预的研究现状。结果 尿失禁在生理、心理、日常生活、性生活等方面不同程度地影响了患者的生活质量,通过规律的盆底肌肉锻炼能够预防及控制尿失禁症状,改善患者的生活质量。结论 应当在社区开展一些宣传活动,积极宣传尿失禁是可以治疗的,采取积极有效的措施来预防和管理尿失禁,改善患者的生活质量。     

Men's management of urinary incontinence in daily living: implications for practice

Many men develop urinary incontinence following prostate disease or surgery. Men with urinary incontinence use strategies to manage urinary incontinence in their daily lives, often with minimal assistance from health professionals. Much of the available information and advice offered to men about daily‐living management of urinary incontinence have been adapted from information relating to management difficulties experienced by women. This study explored strategies used by community‐dwelling men to manage urinary incontinence in their daily lives. Men with self‐reported urinary incontinence were recruited from clinical and non‐clinical settings. A researcher‐developed survey was used to identify type, severity and duration of urinary incontinence, and the strategies men used to manage urinary incontinence in daily living. Sixty‐one items, grouped according to functional strategies, asked how often each strategy was used to manage urinary incontinence. A response rate of 66% was achieved with 103 men completing a survey. The findings of this study can be used by urology nurses to ensure continence education for men with urinary incontinence addresses areas that are of most importance, as well addressing their specific needs.     

Fear of humiliation inhibits women's care-seeking behaviour for long-term urinary incontinence

Most women with urinary incontinence (UI) do not seek professional help. Women's experiences of their behaviour when seeking care for incontinence are important to improve understanding by nurses and encourage as well as enable women to seek help. The aim of this study was to illuminate the meaning of women's lived experiences of their behaviour when seeking care for long-term UI. Thirteen women were interviewed (range 37-52 years) who had not sought professional help for incontinence. A phenomenological hermeneutic method was used to analyse and interpret the interview texts. Three themes evolved from data: being in an affected situation, having personal beliefs about seeking care and having desired expectations about care. Being in an affected situation, means that the women were negatively affected by their long-term incontinence. Living with shame, altered sexual relationships and a need for distancing have negatively influenced their care-seeking behaviour (CSB). Having personal beliefs about seeking care means that the women had their own beliefs regarding morally acceptable behaviour for seeking care because of incontinence. This led to a toning down of their problem and a minimization of the problem associated with incontinence as it was considered to be a normal consequence of pregnancy and childbirth. Having desired expectations about care means that the women had opinions relevant to the care and felt being asked about incontinence and an understanding atmosphere should be included. The conclusion is that fear of humiliation inhibited women from seeking care for long-term UI. The findings suggest that nurses should be precise when asking about women's experiences of UI because otherwise they do not bring it up. Additionally, CSB can help nurses to explain the experience and enable women to seek help for this manageable condition.     

Identifying strategies for managing urinary incontinence with women who have multiple sclerosis

The aim of this pilot project was to identify strategies for managing incontinence with women who have multiple sclerosis (MS). The project used the formation of a group in which eight women with MS and four Continence Nurse Advisers (CNAs) and the first author were brought together. In the course of the research process, the women found a voice on a topic previously thought of as taboo. When they realized that they had suffered alone and in silence they felt empowered to act. In this way, the methodology evolved from group work into a participatory action research process (PAR), as the group initiated action. Participants formed a self-help group, and continued to meet with each other after the research had run its course.     

Chronic illness: reflections on a community-based action research programme

AIM: The purpose of this paper is to describe the birth of a research culture in a community nursing service, and the development and implementation of an action research programme that focuses on understanding the experiences of living with chronic illness. BACKGROUND: Approximately 70% of the clients of our community nursing practice in South Australia live with chronic illness. Our research interest has focused on how community nurses can assist people living with chronic conditions to live 'well'. In this paper we describe the way in which we have applied the principles of participatory action research (PAR) when working with women who live with multiple sclerosis (MS) and urinary incontinence. We then draw on elements of PAR research with men who live with MS and men and women who live with type 2 diabetes. In total, we have convened eight PAR groups researching with people who live in the community with chronic illness and this work constitutes our chronic illness research programme. DESIGN: The PAR philosophy is based on the principles of democratic, equitable, liberating and life enhancing relations within a research process, and is operationalized in cycles of: look, think and act. In these collaborative inquiries the researchers have facilitated participants to reflect on how illness affects their lives, to tell their own story, make connections, plan action and help them negotiate the rites of passage. We select two areas for discussion: methodological issues in the application of PAR principles and our tentative findings from the chronic illness research programme. FINDINGS: We assert that the facilitator's skill in managing group dynamics is crucial to the life and outcome of the project. Change can occur as a result of action at an individual level, with improved self-management of chronic illness, or at a collective level where the PAR group instigates larger reform strategies. In terms of tentative findings, men and women living with a chronic illness appear to be involved in an ongoing process of transition toward incorporating the illness into their lives. Although we have not yet identified specific events, we have noted that there are critical turning points in the illness transition experience. Participants feel validated in telling their story of living with a chronic illness. Story telling may be the turning point that enhances the lives of all those who participate. CONCLUSION: If health care professionals can understand the process that facilitates people to move toward incorporating chronic illness into their lives, we can make a substantial contribution to enhance their chronic disease self care management.     

A journey towards continence through emancipatory action research

Emancipatory action research was used to assist four women in developing an understanding of the feelings and reactions associated with urinary incontinence. The four participants initially expressed feelings of anger, embarrassment and frustration towards their urinary incontinence, perceiving it as a threat to their self-esteem. Through reflection they discovered that they held several misconceptions about urinary incontinence. They believed that it was a result of childbirth and ageing, and that little to nothing could be done to treat it. During the study, which took place over a period of 5 months, the women's level of knowledge, confidence and trust increased leading to the formulation of new insights. This enabled them to actively deal with their concerns and to initiate change. The resulting action plans incorporated conservative treatment plans and the development of a support group. Six weeks after commencement of the study, three of the four women regained continence. The fourth participant reported a significant improvement in both frequency of incontinence episodes and quality of life.     

Women's experiences with vaginal pessary use

Title.  Women's experiences with vaginal pessary use.
Aim.  This paper is a report of a study of the lived experiences of women using vaginal pessaries for the treatment of urinary incontinence (UI) and/or pelvic organ prolapse.
Background.  The use of a vaginal pessary offers a non-surgical treatment option to provide physical support to the bladder and internal organs. As the literature asserts, a woman's choice to use a pessary is very individual and involves not only physical, but also psychological and emotional considerations.
Method.  Narrative inquiry was used to conduct face-to-face semi-structured interviews in 2007 with 11 postmenopausal women who accessed services from a Urogynecology Clinic in Eastern Canada.
Findings.  The women's stories revealed that living with a pessary is a life-changing experience and an ongoing learning process. The women's comfort level and confidence in caring for the device figured prominently in their experiences. Psychosocial support provided by the clinic nurses also played a primary role in the women's experiences.
Conclusion.  Women and healthcare professionals need to be aware of the personal isolation and embarrassment, and social and cultural implications that urinary incontinence may cause as well as the subjective experiences of using a pessary. With appropriate support, vaginal pessaries can provide women with the freedom to lead active, engaged and social lives.     

Exploring women's beliefs regarding urinary incontinence

The purpose of this study was to explore and describe women's beliefs, knowledge, and need for education regarding female urinary incontinence (UI). Findings suggest that almost half of the women surveyed believed UI was normal. A majority believed it is a problem for women, but felt they could not talk about it freely. Most knew professional help was available and indicated they would seek help if incontinent, but expressed a need for more information. They varied in their beliefs regarding the efficacy of various treatment modalities. Implications for nursing practice are discussed.     

The meaning of women's experience of living with long-term urinary incontinence is powerlessness

Aim. The aim was to illuminate the meaning of women's experiences of living with urinary incontinence (UI). Background. Living with long‐term UI means a variety of consequences for everyday life. Women's narratives about their lived experiences are important in enabling nurses to better understand and to help women achieve symptom control. No previous study could be found that has focused on the meaning of women's experience of living with UI from a symptom management perspective. Method. Fourteen women with UI (range: 34–52 years) who had sought professional help were interviewed. A phenomenological hermeneutic method was used to analyse and interpret the interview texts. Findings. The women's experiences of living with UI are presented in terms of two interlaced themes of being in a vulnerable situation and striving for adjustment. Being in a vulnerable situation means that the women had no control over UI and experienced powerlessness. The sub‐themes in this case were living with an uncontrolled body, living with incontinence as taboo and experiencing a less satisfying encounter. Striving for adjustment means that the women tried to handle their incontinence in different ways to regain power and continue to live as normal. The sub‐themes here were living in readiness, making urine leakage comprehensible, accepting living with UI and being familiar with the situation. Conclusion. The meaning of women's experience of living with UI is powerlessness. Relevance to clinical practice. Nurses should supervise women in pelvic floor muscle training to achieve control over incontinence, thereby helping them regain power. Additionally, Integrated Approach to Symptom Management can help nurses enhance women's self‐care abilities.     

Living through gynaecological cancer: three typologies

Aims and objectives. The aim of this qualitative study is to highlight how women experienced living through gynaecological cancer. Background. The increasing number of long-term survivors after cancer has created a greater need for knowledge about how patients live through the illness. Design. A qualitative design, with a phenomenological-hermeneutical perspective, provided the framework for the study. Method. Thirty-two unstructured in-depth interviews with 16 women were conducted. Each woman was interviewed twice: one?year apart, and five and six?years after treatment, respectively. Stepwise meaning condensation was used to analyse the data. Results. Based on the women's first-hand stories about their experiences with cancer, we identified three typologies, describing different ways in which the women negotiated encountering and living through cancer. These typologies are the emotion- and relationship-oriented women, the activity-oriented women and the self-controlled women. Conclusions. There are substantial differences regarding how women process the experience of cancer. The findings add valuable knowledge about the impact cancer can have on women's lives and can be of help for nurses who support patients during treatment and follow-up. Relevance to clinical practice. Understanding different ways women can experience living through cancer is fundamental for the development and improvement of cancer care. Allowing time for the women to talk with nurses about their cancer experiences could be essential during treatment and follow-up. Nurses can support the women by listening to their stories, accepting their emotions and informing them in detail. The findings in this study imply that strengthening nurses' listening and conversational competence can be of importance for supporting patients after cancer. By building on the women's own stories, it might be possible to create a follow-up process that is individually tailored for each cancer patient.     

Chinese women's experiences of stress incontinence: a descriptive qualitative study

This study explored the perceptions of 35 Chinese women on the impact of stress urinary incontinence on their life and their adherence to pelvic floor muscle exercise program. Audiotaped interviews were conducted at a time and place convenient to them. Content analysis was used to extract significant categories that described their experience. The five major categories that emerged were: (i) perceptions of stress urinary incontinence; (ii) living with urinary incontinence; (iii) emotions and feelings; (iv) factors facilitating pelvic floor muscle exercise and (v) factors inhibiting pelvic floor muscle exercise program. The women who adhered and those who did not adhere to pelvic floor muscle exercised were similar in the two categories of living with urinary incontinence, and emotions and feelings. However, there were great differences between the perceptions of the two groups in three categories on perceptions of urinary incontinence, factors facilitating and inhibiting the performance of pelvic floor muscle exercise.     

Gender politics and secure services for women: reflections on a study of staff understandings of challenging behaviour

This paper discusses the findings of a Q methodological study that investigated the complexity of professional understandings of (attitudes towards) residents in a secure unit for women with learning disabilities and challenging behaviours. Particular attention is afforded to the critical debate regarding women in psychiatric and secure care, including the significant contribution made to this literature by feminist perspectives. A multiprofessional group of staff (n = 38) participated in the study and nine distinct accounts of women's challenging behaviour are described. Despite a considerable amount of recent policy concern with the position of women in psychiatric services, the findings of this research suggest that many front line staff are reluctant to highlight gender in their explanations of women's behaviour. This supports the assertion by Williams et al. (2001), who were involved in the National Gender Training Initiative (NGTI), that most critical theorizing about women's mental health has had minimal impact at the level of individuals' understandings of these important issues. This state of affairs suggests a powerful case for the expansion of staff training as provided in the NGTI, which makes gender central to understanding and emphasizes feminist perspectives.     

健康教育对尿失禁妇女的护理效果评价

目的 探讨健康教育对尿失禁妇女护理效果的影响作用.方法 于2010年1月～12月对在我院参加妇科普查的1 943名成年妇女进行尿失禁知识健康教育及定期随访,分别于健康教育前、6个月回访时进行问卷调查,以评价健康教育前后尿失禁妇女的护理效果.结果 在1 943名妇女中,健康教育后参加盆底肌训练及坚持训练的人数明显高于健康教育前,健康教育后到医院咨询及治疗人数明显高于健康教育前,健康教育后SUI患病人数及中重度比例亦明显低于健康教育前(P＜0.001).结论 对妇女进行尿失禁知识健康教育,推广盆底肌训练和膀胱功能训练,能显著提高妇女对尿失禁的认知,降低尿失禁的发病率,减低中重度比例,是保障妇女生殖健康的重要措施.

Abstract：

Objective To discuss nursing effect of health education on women with urinary incontinence. Methods From January to december in 2010, 1 943 adult women who received gynecology general survey in our hospital were treated with health education for urinary incontinence and were followed up regularly. They were investigated by questionnaire survey before health education and 6 months later after health education respectively. The effect of nursing for women with urinary incontinence were assessed. Results In these women patients,after health education, there were more women who participated in pelvic floor muscle training and adhered to training than before health education, the number of patients who received consultation and treatment increased significantly more than before. Afterf health education, the incidence of SUI, the proportion of moderate and severe symptoms were also significantly lower than before (P ＜0. 001 ). The differences was statistically significant. Conclusions Making health education on women with urinary incontinence and promoting pelvic floor muscle training (PFMT) and bladder functional training can significantly improve women's awareness of urinary incontinence, reduce the incidence of urinary incontinence, reduce the proportion of moderate and severe symptoms. These measures are important to protect women's reproductive health.