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.     

The quest for ordinariness: transition experienced by midlife women living with chronic illness

AIMS: This paper reports the findings of research that aimed to elucidate the meaning of midlife women's experiences of living with chronic illness. BACKGROUND: A lack of awareness by health professionals of the context in which women must live with chronic illness often results in women feeling overwhelmed, alienated and without voice within the delivery of health care. This inquiry privileged women's voices. DESIGN: The construct of 'transition' in chronic illness experience evolved from this collaborative and participatory research with midlife women living with adult onset chronic illness. Over a 1-year timeframe, 81 women were asked to tell their stories of living with a chronic illness. These correspondence data were thematically analysed to provide storied accounts. Guided by feminist principles, women were empowered through research processes and have actively participated in the development of the transition construct. FINDINGS: The research revealed that when women are first confronted with a chronic illness they appear to move through a complex trajectory that involves an 'extraordinary' phase of turmoil and distress; however, they may then make the transition toward an 'ordinary' phase that involves incorporating chronic illness into their lives. Transitions in chronic illness experience involve movement from extraordinariness to ordinariness and sometimes back again and were found to be processes that are nonlinear, sometimes cyclical and potentially recurring throughout a woman's life. Four major constructs emerged from women's narratives: How quickly life changes; extraordinariness: confronting life with illness; The illness experience as transforming and ordinariness: reconstructing life with illness. CONCLUSION: Nurses are in a position where they may make a difference to women who live with chronic illness. Understanding illness transitions offers a framework that will enable nurses to move beyond the bio-medically orientated concepts of nursing practice, towards a holistic approach to the provision of nursing care.     

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.     

Wellness Profile of Midlife Women with a Chronic Illness

Among issues important to women's health are their wellness profiles including indicators such as activity level, weight status, breakfast and snacking patterns, health status perceptions, and alcohol and tobacco use. This is particularly true for midlife women with a long-term illness. The purpose of this study is to identify the wellness profile of a group of midlife women with multiple sclerosis (MS), and to compare their life-style indicators with national health statistics. Overall, the women in the study group indicated a lower perception of their health status and were less active. However, the women in this study group demonstrated healthier body weights, used less tobacco and alcohol, had better breakfast patterns, and comparable snacking patterns, indicating that may be more attuned to their bodies than women without chronic illnesses. Identifying women's wellness profiles can assist practitioners in addressing the issues of health for women managing a long-term illness.     

A conceptual framework for studying child adaptation to Type 1 diabetes

Understanding the challenges of managing a chronic illness, nurses provide a key component of care to patients and families who struggle daily with the demands of self-management and the balance of daily life challenges. Even though nurses empathize with the issues of chronic illness management, the complexity of managing such clients has not been articulated in a theoretical or research base. Hence, the nursing process related to facilitating adaptation to childhood chronic illness remains in a formative stage. My article presents a conceptual framework that can guide the study of children and families coping with children with Type 1 diabetes. The framework also may prove useful for other chronic illnesses.     

Sexuality of people living with a mental illness: A collaborative challenge for mental health nurses

This article is a review of the literature examining the sexuality of mental health consumers and the role of mental health nurses. A search identified 72 English articles on the topic. The evidence clearly indicates that sexuality is a critical aspect of who we are as individuals, and of how we view ourselves, but discussion of this topic is neglected by mental health nurses. Discussion focuses upon the wide acceptance of sexuality as a legitimate area for nurses to address in their care, and addresses mental health nurses' lack of knowledge about sexuality, conservative attitudes, and anxiety when discussing sexual issues. Consumer sexuality is poorly assessed in mental health, and is infrequently explored by mental health nurses. The result is that issues of sexuality for the consumer continue to affect many areas of their lives, including their relationships and ongoing commitment to treatment. The nurse–consumer relationship provides an opportunity to take sexual history into consideration, promote safe sexual practices, discuss sexual problems, and educate clients about sexual issues. This literature review identifies the need for further discussion of this topic and for research to point the way ahead for this important but neglected area of mental health nursing.     

Sexual health. 2: An overt approach to sexual health education

An individual's sexuality is not always understood and recognized by healthcare workers. Some nurses have conservative and rigid attitudes regarding sexuality and undertake nursing interventions that may have a detrimental effect on a client's sexual health. If nurses are to take a responsible approach to their nursing interventions they need to reflect upon their knowledge, skills and understanding in relation to their own sexuality and the sexuality of others, and identify ways of rectifying shortfalls. The first of this two-part article discussed issues relating to sexuality in health care (Vol 8(9): 601-6). This part will use a sexual health model to highlight nurses' learning needs. Nurse educators need to include sexual health more overtly within the curriculum. It is important that nurses do not try to be sexual counsellors. Nurses need to acknowledge their limitations and the harm that inappropriate interventions can produce. If sexual health is to be included in nursing curricula, it should not be trivialized. A planned progressive model is required which acknowledges that the human condition is diverse and individual.     

'Veiling sexualities': a grounded theory of mental health nurses responses to issues of sexuality

Title. ‘Veiling sexualities’: a grounded theory of mental health nurses responses to issues of sexuality. Aim. This paper is a report of a study to develop a grounded theory explaining how mental health nurses respond to issues of sexuality in clinical practice. Background. The history of sexuality and people with mental health problems has largely been a history shrouded in misunderstanding, stigma, myth and negativity. However, individuals with mental health problems may experience sexuality and relationship difficulties related to their life experiences, mental illness, or its treatment. Methods. Grounded theory was the methodology used for the study. Interviews were conducted in 2005–2006 with 27 mental health nurses working an urban area in the Republic of Ireland. Data were analysed using the concurrent processes of constant comparative analysis, data collection, theoretical sampling and memo writing. Findings. The core category to emerge from the data was ‘veiling sexualities’. This refers to participants’ accounts of how they responded to the sexuality dimension of clients’ lives. Participants’ main concerns about sexuality were related to feelings of personal and professional vulnerability, due to a lack of competence, comfort and confidence in this area. The theory highlights the manner in which nurses perpetuate practices that marginalize, discriminate and socially exclude clients as ‘sexual citizens’. Conclusion. The theory of Veiled Sexualities may facilitate acknowledgement of the presence of sexuality in all nurse–client encounters, and promote a discourse on the sexual rights of people experiencing mental distress among mental health nurses and all involved in the delivery of mental health services.     

Pen pals: correspondence as a method for data generation in qualitative research

The study aimed to understand the impact of chronic illness on the lives of midlife women and explore and share the ways in which women adapt to and/or tolerate chronic illness in their lives. In 1998, 80 women participated in a study in which data were generated by corresponding with the researcher. Guided by feminist principles of collaboration, reciprocity and disclosure, we created rich stories about what it is like to live with a chronic illness. In this paper we will discuss the first phase of this inquiry which utilized correspondence between the researcher and the women. The issues posed by the use of correspondence as an innovative data generation process will be analysed. Correspondence, at first glance, may appear to be a rather impersonal communication medium. However, we are committed to this method of data generation and believe we have unlocked the doors to a viable qualitative research process. The literature to guide this process is scarce so we are keen to share work in progress. We will describe the preparation phase in setting up the study; discuss some practical issues, share some of the researcher's experiences in generating narratives from dialogues and hear from the women themselves what they consider to be significant about this research process.     

Kicking Eeyore into touch:'living-strong','nursing-strong' and being appreciative and solution-focused

The potential benefits of moving away from a problem/needs oriented approach to a solution-focused, appreciative way of working with children and their families are explored in this paper. It aims to acknowledge and celebrate the expertise of children and their families and the nurses who care for and with them. I draw on both Appreciative Inquiry - a dynamic, dialogic framework for appreciative thinking with people about situations and settings - and Solution-Focused Nursing as means of underpinning my proposal to further shift the way that children's nurses think and work with children and their families and genuinely consider the families' expertise and knowledge. This requires us to be attuned to the diverse ways of experiencing things and multiple ways in which nurses can care with families. It requires us to carefully consider not only what we say but how we say it and the impact that our dialogue with children has on them. Equally it requires children's nurses to acknowledge and celebrate what they do well and embrace and engage with the energy and creativity that underpins strong, resourceful, innovative and expert practice. I propose a manifesto for children's nurses that acknowledges these attributes and encourages us to 'think solutions', to be nurses that children will remember who help children and families to live well and live-strong with their illness.     

An exploratory study of psychiatric patients' needs and nurses' current practices related to sexual counseling

The purpose of this study was to explore psychiatric patient needs and current nursing practice with regard to sexual counseling and to understand differences in individual patient characteristics. A total of 182 psychiatric patients and 44 psychiatric nurses were purposively selected from a mental hospital in northern Taiwan. Results revealed that 63.2% of subjects had not been given sexuality information and 81.9% had not been approached by nurses to discuss such issues. While 35.2% of study patients treated sexual issues as psychological or private issues that should only be discussed with psychologists, 33.5% expressed a desire to discuss issues related to sexuality with nurses. Even so, most subjects preferred to discuss sexual issues in a private way, and asked for assistance from same-gender professionals. Also, patients with higher education levels placed greater attention on the counseling topics of how to express sexual needs and the impacts of mental illness on sexuality. With regard to nurses participating in the study, female nurses had a generally more conservative attitude toward sexual values than males. Those who were married, older, or had received continuing sexuality education were more comfortable with conducting sexual counseling. Those with clinical experience and continuing sexuality education were able to take more responsibility and a more professional role in sexual counseling. Data collected on the specific subject groups in order to provide effective comparisons can be employed to refine current sexual counseling training programs for nurses in order to improve patient care.     

Gender-related concerns of rural women with severe and persistent mental illnesses

This study used focus groups to investigate the perceptions of rural women with severe and persistent mental illness (SPMI) about their gender-related health concerns. In a series of five focus groups conducted with 16 women at rural psychosocial clubhouses, women with SPMI discussed many gender-related issues, including unresolved grief over loss of children, isolation from family members, lack of sexual partners, diminished sexuality, and bodily changes secondary to medication side-effects. Women with mental illness felt like their roles as women was superseded by their role as mentally ill individuals. Rural women with SPMI have unmet needs for women's health. Psychiatric nurses have the optimal background for addressing gender-related concerns of rural women with SPMI.     

The domination of chronic illness research by biomedical interests

The interest of biomedicine is the physical body viewed in isolation from the contextual understandings which shape the chronic illness experience. This neglect of the illness experience was evident in an inquiry conducted by the first author with 81 women who live with chronic illness. Herein we discuss a secondary analysis of the correspondence data in which we found many common elements across different medical diagnoses.     

Bordering on insanity: misnomer, reviewing the case of condemned women

In the UK, there have been calls to develop gendered specific mental health services for women in an attempt to ensure privacy and dignity are achieved as and when women come into contact with services. This is a largely rhetorical policy objective. There are more fundamental factors affecting women's experience of mental health services that need addressing. This paper explores these issues in the context of mental health care for women who have been 'given' the diagnosis of borderline personality disorder (BPD). Borderline personality disorder effects 2% of the adult population, 75-90% of those diagnosed being women. This diagnosis continues to present considerable conceptual and therapeutic challenges for all of those involved in mental health services and it remains a categorical label that evokes a wide range of conscious and unconscious responses in mental health nurses. The paper argues that mental health nurses need to recognize the defence mechanisms involved in working with individuals who are often difficult to work with. It is only when mental health nurses can embrace and acknowledge the person in the context of their life, that the pejorative and disabling consequences of the BPD label can be eliminated, ensuring the individual's story is heard and not that which is often a pre-constituted account accompanying this diagnosis.     

Talking or avoiding? Mental health nurses' views about discussing sexual health with consumers

Mental health consumers are sexual beings; however, their sexual desire, capacity, and ability to maintain previous sexual patterns can be altered by their illness or by the effects and side-effects of medications. The sexuality of consumers has been poorly addressed, and the limited evidence suggests that mental health nurses remain ambivalent to including sexuality in their care. This paper presents the findings of a research project investigating the practices of mental health nurses in assessing and supporting the sexuality of consumers. A qualitative, exploratory approach underpinned individual interviews with 14 mental health nurses from inpatient and community settings. The participants acknowledged the importance of sexuality; however, most were reluctant to enquire about consumer concerns and tended to either ignore the issue or refer it to another clinician. Four themes were identified: talking about or avoiding sexuality concerns with consumers; sexuality is not an important priority; refer to others, as talking about sexuality is not 'my' job; and sexuality is poorly addressed by others. It is important that barriers to the assessment and discussion of sexuality are identified, and measures are taken to overcome them.     

Who cares for older people with mental illness? A survey of residential aged care facilities in the Australian Capital Territory: Implications for mental health nursing

Residential aged care facilities are increasingly becoming locations wherein the most frail and older people with mental illness live out the remainder of their lives, yet it has become apparent in recent years that these institutions are fraught with a variety of social and clinical problems. One issue of concern has been the exodus of registered nurses (both general and psychiatric), who have been increasingly replaced by carers with little or no expertise in psychiatric illness or disorders of cognitive decline. This 'de-professionalizing' of aged care has important implications for the well-being of clients, particularity those with complex mental health problems. In this survey we sought to discover demographic information concerning those who provide front-line care to this population of aged Australians, and we sought also to ascertain how much education in caring for residents who suffer specifically from neurodegenerative disorders (the dementias) and mental illness was provided by the facilities to those who care for such older people. The lack of training in the areas of mental health and cognitive impairment raises a variety of issues that mental health nurses need to address. These issues cover clinical, professional, and social justice dimensions. We believe that mental health nurses are strategically and professionally placed to take a leadership role in raising the profile of aged care in this country and they need to act proactively to secure the well-being of this particularly vulnerable client group.