Constructions of sexuality for midlife women living with chronic illness

AIM: In this paper, we reveal constructions of sexuality that were articulated by women who participated in an inquiry which aimed to understand the experiences of midlife women who live with chronic illness. The aim of this paper is to illuminate sexuality as an important health issue for women living with chronic illness and to offer ways that nurses may acknowledge and facilitate sexuality issues for women. BACKGROUND: The first author, as part of her doctoral study, corresponded with 81 women living with chronic illness. The participatory inquiry was framed by feminist principles and enabled women to anonymously share their experiences and collaborate in the direction of the research. During the analysis phase of the research, it became evident that illness had altered the way in which women conceptualized sexuality. DESIGN: The three authors performed secondary analysis of the original data set in order to re-examine the impact that chronic illness had on the sexuality of midlife women who live with chronic illness. Whilst we acknowledge that sexuality has multiple meanings, in this paper we describe the way in which women themselves have constructed and articulated their sexuality. FINDINGS: We found that sexuality incorporated women's desires, appearance, sexual feelings and expression and imposed on aspects of their lives that they had not needed to acknowledge before illness intruded. Three concerns are discussed; the changing body, meeting the needs of others and communicating sexuality. CONCLUSIONS: This paper reveals that issues of sexuality are an important health concern for women who live with long-term illness and should be acknowledged in sensitive and responsive health practices. The paper concludes that it is important for nurses to provide women opportunity for open and genuine communications about sexuality. In this way, a foundation of acceptance for the whole person is established which provides women permission to ask questions and seek assistance with sexuality issues.     

Older people living with chronic illness

This study aimed to gain a better understanding of what it is like for older people to live with chronic illness. A Phenomenological method was used. A purposive sampling strategy was used to recruit older people with chronic illness from one community in Nakhonratchasima province, Thailand. Semi-structured interview guides were used to explore the participants' experiences and perceptions. Data saturation was reached after 30 interviews were completed. The data was analyzed using thematic analysis. Four themes emerged from the data: 1) living a restricted life, 2) feeling overwhelmed, 3) understanding and accepting loss, and 4) being kind to oneself and learning to live with the disease. The findings may increase understanding about what older people with chronic illness experience. Health care providers can use this understanding to relate health care and guidance to their patients by incorporating cultural influences and religious/spiritual beliefs into the standardized care for this population.     

Chronic illness -- a disruption in life: identity-transformation among women with chronic fatigue syndrome and fibromyalgia

BACKGROUND: People with chronic illnesses often suffer from identity-loss. Empirical research concerning patients with chronic fatigue syndrome (CFS) or fibromyalgia has not, however, adequately addressed the consequences of these illnesses for identity. AIM: The aim of this article is to describe how women with CFS and fibromyalgia create new concepts of identity after the onset of illness, and how they come to terms with their newly arisen identities. I aim to illuminate the biographical work done by these individuals, which includes a re-evaluation of their former identity and life. This process is illustrated by the following themes: An earlier identity partly lost and Coming to terms with a new identity. METHOD: The study is based on interviews with 25 women in Sweden, 12 with the diagnosis of CFS and 13 diagnosed with fibromyalgia. A grounded theory orientated approach was used when collecting and analysing the data. FINDINGS: The main findings are that: (1) the illnesses can involve a radical disruption in the women's biography that has profound consequences for their identity, particularly in relation to work and social life, (2) biographical disruptions are partial rather than total, calling for different degrees of identity transformation, (3) many of the women also experience illness gains in relation to the new identity. CONCLUSIONS: Thus, the biographical disruption and illness experience comprised both losses and illness gains that had consequences for identity.     

Myth of empowerment in chronic illness

AIMS: This article presents several findings of a study, conducted between 1996 and 1998, to investigate self-care decision making in diabetes. RATIONALE: The underlying assumption of many practitioners is that an invitation to people with chronic illness to participate as equal partners is sufficient to guarantee their empowerment. DESIGN: Using grounded theory, the research examined self-care decision making using a convenience sample of 22 Canadian adults with longstanding type 1 diabetes nominated as expert self-care managers. Participants audiotaped their decision making as it occurred for 3 weeks over the course of one calendar year. These audio-recordings were followed by an interview to clarify participants' decision making and factors that affected their decisions. FINDINGS: Participants identified several covert and subtle ways that practitioners contradict their stated goal of empowerment in their interactions with diabetics. Participants revealed that despite their intention to foster participatory decision making, practitioners frequently discount the experiential knowledge of diabetes over time and do not provide the resources necessary to make informed decisions. CONCLUSION: The article concludes with a discussion of the implications of the findings for practice.     

The symptom experience of women with chronic illness

AIM OF THE STUDY: This integrative review examined how women interpret, cope with, and manage chronic illness symptoms. BACKGROUND: Women with chronic illness report more symptoms and poorer physical health than men. They also enter the health care system later and sicker than their male counterparts. One possible reason for their increased morbidity and mortality is gender differences in interpreting and managing symptoms. METHOD: The inclusion criteria that guided this review were that: (a) the study was published between January 1, 1990 and December 31, 1999; (b) participants were women with at least one chronic health problem; and (c) the study addressed symptom perception, symptom evaluation, and/or symptom management. Databases were searched using women, symptoms, chronic illness, coping, and research as key words. FINDINGS: One hundred and ten published studies were reviewed, yielding 35 journal articles reporting on 32 separate studies that met the inclusion criteria. The analysis identified important gender differences in symptom experience. While studies of coping with symptoms are well represented in the literature, symptom strategies and the cultural meaning of symptoms are understudied. CONCLUSION: Five categories of practice implications emerged from the data. These included physical functioning, coping, self-care, roles and relationships, and socio-cultural issues. Within each category specific directions for nursing practice were developed.     

Management of chronic illness: voices of rural women

BACKGROUND: The prevalence and cost of chronic illness globally and in the United States of America continue to escalate and the day-to-day management of these conditions presents a major challenge. The burden of chronic illness disproportionately affects vulnerable populations such as women and those living in rural areas. AIM: To add to the knowledge base of illness management by chronically ill rural women through examining their individual perceptions of the illness experience. METHOD: The Women to Women project provided a nursing research-based computer intervention model for conducting support groups, providing health education, and fostering self-care, via personal computers and evaluated its effect on the women's psychosocial health. FINDINGS: Fatigue and pain were the major physical symptoms that impacted the women's quality of life, with depression and stress being the primary emotions they experienced. The characteristics of humour, hope, and courage were key in their successful adaptation to living with chronic illness. CONCLUSIONS: The women's voices relate how they manage their illness responses and adaptation mechanisms. The data provide nurses with information to heighten their sensitivity to clients' day-to-day needs and experiences. It will assist them in their designing and planning of interventions that will enable clients to adapt and to have the best quality of life possible within the limitations of their chronic illnesses. The data are also important to nurses involved in rural research and theory development concerning self-management and adaptation to chronic illnesses.     

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.     

Experienced dilemmas of everyday life in chronic neuropathic pain patients--results from a critical incident study

Neuropathic pain is a disabling chronic condition with limited therapeutic options. Few studies have addressed patient's experience and strategies. The aim of this study was to explore dilemmas experienced in order to improve care and rehabilitation. An interview study with 39 patients suffering from neuropathic pain of different origin was performed. We used the critical incident technique to collect data. Questions on occasions when patients had been hindered by or reminded of their neuropathic pain were included, and the self-perceived consequences and management of such occasions. The interviews were transcribed verbatim and analysed qualitatively. A broad range of experiences categorised into dilemmas, disturbances, consequences and managements from most parts of everyday life was identified. The dilemmas were 'housework', 'sitting', 'physical activity', 'personal hygiene', 'sleeping difficulties', 'hypersensitivity to external stimuli', 'social relationships', 'transportation' and 'leisure time'. Disturbances were 'failures', 'inabilities' and 'restrictions'. Consequences were 'increased pain', 'psychological reactions' and 'physical symptoms'. The majority of the patients used activity-oriented strategies to manage their pain such as alternative ways of performing the task, a cognitive approach or simply ignoring the pain. This is one of the first studies presenting detailed data on everyday dilemmas, disturbances and consequences of patients with chronic neuropathic pain. Such information is important in clinical settings to improve care and rehabilitation.     

Characteristics of social participation as defined by older adults with a chronic physical illness

Purpose. To conceptualize social participation in line with the experiences of older adults with a chronic physical illness.

Method. Qualitative study consisting of ten individual interviews and two focus group interviews with older adults with Chronic Obstructive Pulmonary Disease or Diabetes Mellitus Type 2.

Results. Four domains of social participation were identified on the basis of the individual interviews: (i) social contacts and social activities, (ii) work and informal support, (iii) cultural activities and public events, and (iv) politics and media. Three characteristics of social participation could be distilled from discussions in the focus groups: social contact, contributing resources to society and receiving resources from society. In addition, only positive experiences were considered to be social participation.

Conclusions. In our study, older adults with a chronic physical illness perceived social participation as a positive experience having one or more of the following three characteristics: social contact, contributing resources to society or receiving resources from society. This is fairly consistent with the literature about social participation, although previous researchers did not mention a positive experience condition and disagreed whether receiving resources could be considered as ‘genuine’ social participation.