Struggling for dignity: the meaning of women's experiences of living with fibromyalgia

Fibromyalgia (FM) is a common chronic pain syndrome with an obscure etiology, which mostly afflicts middle-aged women. In this study, 14 women with FM were interviewed about the meaning of living with the illness. A phenomenological-hermeneutic method was used to analyze and interpret the interview texts. The findings show that being a woman with FM means living a life greatly influenced by the illness in various ways. The women's experiences of living with FM were presented in three major interlaced themes: loss of freedom, threat to integrity, and a struggle to achieve relief and understanding. This study highlights the importance of meeting people suffering in illness with respect for their human dignity. The care of women with FM must empower the women to bring to bear their own resources so that they can manage to live with the illness.     

Hovering between suffering and enduring: the meaning of living with serious chronic illness

Illness is part of life and hence always has a place in a life history. All that went on before the time of the illness, how life was in the past and what hopes and dreams were interrupted and changed, all influence the experiences of illness. The authors interviewed 5 women and 5 men with different kinds of serious chronic illnesses and used phenomenological hermeneutic method to interpret the transcribed interviews. They present the findings in three major themes: experiencing the body as a hindrance, being alone in illness, and struggling for normalcy. Participants seemed to hover between an escape from the emotional suffering pain of illness and the emotionless state of enduring. The comprehensive understanding illuminated that living with a serious chronic illness means living a life that is hovering between enduring and suffering but also including the process of reformulation of the self.     

Quest, chaos and restitution: living with chronic fatigue syndrome/myalgic encephalomyelitis

Chronic illness is disruptive, threatening people's sense of identity and taken for granted assumptions. Transformations in values, expectations and life priorities are likely to be experienced and in order to regain a coherent sense of self, people must interpret their experiences. People with difficult to diagnose illnesses can find themselves living with greater uncertainty and stigma. This paper explores how people with chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) describe and interpret their illness experience by applying Arthur Frank's narrative typologies to analyse interviews with 17 British people with CFS/ME. The analysis proposes that a trajectory of narrative typologies is experienced, starting with a restitution narrative, moving to a chaos narrative and, for most, back to a restitution narrative and on to a quest narrative. The presentation of narrative types put forward by people living with CFS/ME differ to those presented by people who are HIV positive and have been treated for breast cancer.     

Struggling for a tolerable existence: the meaning of men's lived experiences of living with pain of fibromyalgia type

Chronic pain is a major health problem in Sweden because of its consequences in daily life. Fourteen men with fibromyalgia-type pain were interviewed regarding their experiences. A phenomenological hermeneutic method was used to interpret the transcribed interviews. Three major themes emerged: experiencing the body as an obstruction, being a different man, and striving to endure. Overall, the meaning of men's lived experience of chronic pain was experienced as change in the body, self, and relationships. Striving to live life required achieving balance during both calm and difficult phases of the illness--struggling for a tolerable existence. Information from this study could provide guidelines for health care staff members to give empathic and supportive care to men living with a long-term illness.     

Creating empowering meaning: an interactive process of promoting health with chronically ill older Canadians

Many health promotion approaches afford education about disease prevention and enhancement of one's health status. But strategies for enabling older people with chronic illness to better mobilize their resources for everyday living still require development. This practical action research study explored the experiences of 13 purposefully selected older persons who participated in a health promotion intervention premised on the adult education theory of perspective transformation. Findings illuminate health promotion through a holistic interactive process in which professional and chronically ill older person together evolved a caring relationship and enhanced conscious awareness of life and health experiences. Five health-promoting strategies were identified: building trust and meaning; connecting; caring; mutual knowing; and mutual creating. Researchers suggest several important directions to refine professional practice approaches and health care delivery systems in order to promote the health of older persons with chronic conditions.     

Living with diabetes as a transformational experience

The construct of transformation has been presented in many research studies as the epitome of living with a chronic illness. Because it has been inadequately defined, however, many other concepts (e.g., hope, meaning, control) are used in ways that suggest considerable overlap and correspondence with transformation. This article represents an attempt to explicate the structures and processes of transformation as they were revealed in a qualitative inquiry into the experience of individuals with Type I diabetes. In the accounts constructed with participants in this study, the process of personal transformation was significant in the attainment of healthy outcomes. The authors describe this transformation and examine its relationship to control and to the valued outcomes of intensified sense of self, meaning, and mastery.     

Personal resiliency: serious diagnosis and prognosis with unexpected quality outcomes

In this grounded theory study we set out to identify what was common in stories of people with serious disease who had less than a 10% chance of survival, and who had a good quality of life at the time of first interview. A core category of personal resiliency was the organizing theme. This was a way of being and acting in the world that had the person strongly connected to life through relationships and a quality-of-life experience that made their illness secondary to their living. Whereas individual participants might not have had this sense of resiliency at the beginning of their illness, they developed it during the time they were ill, both prior to and during their recovery. Resiliency has five dimensions: Connectedness to their social environment, to family, to their physical environment, to their sense of inner wisdom (experiential spirituality), and a personal psychology with a supportive mindset and way of living which supported their values.     

Living with moderate-severe chronic heart failure as a middle-aged person

In this article the authors describe a study focusing on middle-aged persons living with chronic heart failure (CHF), a group with which few studies have been conducted. They used the lifeworld perspective to focus on persons' lived experiences of the phenomenon, that is, living with moderate-severe CHF as a middle-aged person. They interviewed 7 middle-aged persons (4 men, 3 women; aged 38 to 65 years) and analyzed the data obtained using a phenomenological approach. The phenomenon's essence is described as a life situation characterized by a failing body, a life constantly under threat, a rapidly changing health condition, and an altered self-image, which implies that the persons live in a changed life situation. The essence was further illuminated by three meaning constituents: an ambiguity of the body, losing track of life, and balancing life. Knowledge from this study will help caregivers understand and support patients with this debilitating condition.     

Experiencing chronic widespread pain in a family context: giving and receiving practical and emotional support

The impact of pain and chronic illness on the family has been documented, but there is little information about living with chronic widespread pain in the context of the family. This article uses data from a qualitative study of the experience of living with chronic widespread pain to examine the experience and meaning of support for people with this condition in the context of their families. It focuses on the varying, dynamic and reciprocal nature of practical and emotional support in the family. Family members may provide support but are also receivers of support from the person with chronic widespread pain. The factors mediating the provision of this support are also explored, including the nature of the pain and the needs of the person with pain, and the roles, responsibilities and characteristics of other family members.     

Pumping iron: compliance with chelation therapy among young people who have thalassaemia major

Compliance with medical regimens is not simply a technical or practical task but part of the everyday experience of living with a chronic illness. Any discussion of compliance must, therefore, begin from the individual's personal and social context. This paper explores how young people who have thalassaemia major respond to their daily chelation therapy. It suggests that compliance dominates the young person's narratives and represents the most disruptive aspect of their illness. More specifically, compliance evokes both practical and emotional difficulties as the young person tries to make sense of the relationship between body, self and illness. Within this dynamic process the young person has to reconcile the consequences of non-compliance within the broader experience and responsibilities of 'growing-up' and maintaining a positive self-identity.     

The meaning of women's experiences of living with multiple sclerosis

We conducted a qualitative inquiry in order to describe the meaning of women's experiences of living with multiple sclerosis (MS). Multiple sclerosis is a chronic autoimmune disease of the central nervous system. The majority of persons living with MS are women. Living with MS has been described as difficult because of the uncertainty of the illness. Ten women with MS were interviewed and the interviews were analyzed with a phenomenological hermeneutic interpretation. In this study, we suggest that the meaning of living with MS for women can be understood as trying to maintain power and living with an unrecognizable body. The bodies of women with MS serve as hindrances in everyday life. Bodily changes evident to others impose feelings of being met in a different way, which can be understood as an expression of a violated dignity. At the same time, the women with MS struggle to protect their dignity.     

The unfortunate generation: stroke survivors in Riga,Latvia

The poor health status of citizens in post-Soviet states has been reported but few studies have investigated the illness experiences of people in those countries. This paper reports findings from an interview study conducted with stroke patients in Riga, Latvia, who were part of a cohort recruited over 1 year for a European study comparing the provision of care, outcomes and resource use. The interview study aimed to elicit stroke patients' own perceptions of the impact of stroke 1 year after the event. Adopting a phenomenological perspective we illustrate how the particular social setting shapes stroke as an illness, its influences on access to health care and on consideration of the impact of stroke. We argue that for stroke survivors and their relatives in post-Soviet Latvia this disorder acquires a meaning that transcends the individual biography and signifies an upheaval of social life in general. The meanings attributed to stroke by interviewees are developed in the context of the momentous recent historical events which participants lived through. In this sense, stroke has become an idiom of a disruption in social biography rather than individual biography alone. Most participants were pensioners and their main concern was their own poverty. Some complained of their inability to meet their basic needs, much less pay for on-going medication and therapy. Only one person was 'severely disabled', using a standard neurological definition, but about half of those interviewed regarded the stroke as a sign foretelling their own death. Although this generation had expected to be cared for in their older age under the Soviet regime, the much longed for Latvian independence was seen to have brought unexpected hardships for those who were old and sick.     

Living with a person with Alzheimer's disease: experiences related to everyday occupations

The aim of this study was to illuminate experiences of daily occupations among spouses living with a person with Alzheimer's disease (AD). The study contains phenomenological-hermeneutic interpretation of interviews with eight spouses. The analysis revealed the participants as being in the process of a changing occupational situation. They come to live an occupational life intertwined with their partners' needs. An ongoing process of occupational adjustment is taking place as a response to the changing situation. The spouses were occupied with consequences of their partner's disease. They were striving for occupational meaning and at the same time living with threats to meaningful occupations. It can be concluded that living with a partner with AD is a complex dealing with occupational meaning. This complexity should be considered in interventions.     

The Meaning of Women's Experiences of Living With Multiple Sclerosis

We conducted a qualitative inquiry in order to describe the meaning of women's experiences of living with multiple sclerosis (MS). Multiple sclerosis is a chronic autoimmune disease of the central nervous system. The majority of persons living with MS are women. Living with MS has been described as difficult because of the uncertainty of the illness. Ten women with MS were interviewed and the interviews were analyzed with a phenomenological hermeneutic interpretation. In this study, we suggest that the meaning of living with MS for women can be understood as trying to maintain power and living with an unrecognizable body. The bodies of women with MS serve as hindrances in everyday life. Bodily changes evident to others impose feelings of being met in a different way, which can be understood as an expression of a violated dignity. At the same time, the women with MS struggle to protect their dignity.     

Living with a person with Alzheimer's disease: Experiences related to everyday occupations

The aim of this study was to illuminate experiences of daily occupations among spouses living with a person with Alzheimer's disease (AD). The study contains phenomenological-hermeneutic interpretation of interviews with eight spouses. The analysis revealed the participants as being in the process of a changing occupational situation. They come to live an occupational life intertwined with their partners’ needs. An ongoing process of occupational adjustment is taking place as a response to the changing situation. The spouses were occupied with consequences of their partner's disease. They were striving for occupational meaning and at the same time living with threats to meaningful occupations. It can be concluded that living with a partner with AD is a complex dealing with occupational meaning. This complexity should be considered in interventions.     

Lay understanding of familial risk of common chronic diseases: a systematic review and synthesis of qualitative research

PURPOSE: Although the family history is increasingly used for genetic risk assessment of common chronic diseases in primary care, evidence suggests that lay understanding about inheritance may conflict with medical models. This study systematically reviewed and synthesized the qualitative literature exploring understanding about familial risk held by persons with a family history of cancer, coronary artery disease, and diabetes mellitus. METHODS: Twenty-two qualitative articles were found after a comprehensive literature search and were critically appraised; 11 were included. A meta-ethnographic approach was used to translate the studies across each other, synthesize the translation, and express the synthesis. RESULTS: A dynamic process emerged by which a personal sense of vulnerability included some features that mirror the medical factors used to assess risk, such as the number of affected relatives. Other features are more personal, such as experience of a relative's disease, sudden or premature death, perceived patterns of illness relating to gender or age at death, and comparisons between a person and an affected relative. The developing vulnerability is interpreted using personal mental models, including models of disease causation, inheritance, and fatalism. A person's sense of vulnerability affects how that person copes with, and attempts to control, any perceived familial risk. CONCLUSIONS: Persons with a family history of a common chronic disease develop a personal sense of vulnerability that is informed by the salience of their family history and interpreted within their personal models of disease causation and inheritance. Features that give meaning to familial risk may be perceived differently by patients and professionals. This review identifies key areas for health professionals to explore with patients that may improve the effectiveness of communication about disease risk and management.     

A pilot study of how information and communication technology may contribute to health promotion among elderly spousal carers in Norway

The objective of this pilot Norwegian intervention study was to explore whether use of information and communication technology (ICT) by informal carers of frail elderly people living at home would enable them to gain more knowledge about chronic illness, caring and coping, establish an informal support network and reduce stress and related mental health problems. Potential participants were close relatives of an elderly person with a diagnosis of a chronic illness dwelling in the same household who wished to continue caring for their relative at home, were 60 years of age or older, had been caring for less than 2 years, were a computer novice and had Norwegian as their first language. Nineteen elderly spousal carers participated in the study from two municipalities in eastern Norway. The project commenced in January 2004 and consisted of a multimethod evaluation model. Outcomes measured included carers' social contacts (measured by the Family and Friendship Contacts scale); burden of care (measured by the Relative Stress scale); and knowledge about chronic disease and caring, stress and mental health and use of ICT (examined via a composite carer questionnaire). These quantitative data were collected immediately prior to the study and at 12 months. Qualitative data were also collected via focus group interviews with participant carers at 7 months. At follow-up, quantitative measures did not reveal any reduction in carer stress or mental health problems. However, carers reported extensive use of the ICT service, more social contacts and increased support and less need for information about chronic illness and caring. Contact with and support from other carers with similar experiences was particularly valued by participants. The intervention also enhanced contacts with family and friends outside the carer network. Thus, it can be seen that ICT has the potential to contribute to health promotion among elderly spousal carers.     

Parenting a young person with mental health problems: temporal disruption and reconstruction

The article explores the experiences of parents living with a young person with mental health problems. Qualitative interviews were conducted with 25 parents (18 mothers and 7 fathers) whose child had a diagnosed psychiatric condition. It is argued that the parents engaged in a form of narrative reconstruction of their dual roles as parents and carers as they tried to make sense of the illness in their lives by reconstructing their past, present and future experiences. The concept 'responsibility' was threaded through the parents' narratives and is discussed in relation to three key dimensions - moral responsibility; causal responsibility; and responsibility for self. It is argued that the moral imperative to care for their child was the dominant theme in the parents' narratives but that this was challenged by their lack of knowledge of psychiatric conditions; their interactions with healthcare professionals; their relationships with their child; and their difficulties in coping with the extended parental responsibility that arose from their caring role.     

‘Doing’ chronic illness? Complementary medicine use among people living with HIV/AIDS in Australia

This article takes the use of complementary medicine by a group of people living with HIV/AIDS as the starting point for exploring the options for living with chronic illness in contemporary western societies. Some authors have suggested that the situation of living with chronic illness may not be a significant departure from the process of negotiating choice that is theorised to be a defining feature of late-modern society and that there are now many ways of living with or 'doing' chronic illness. This article uses these theoretical concepts to explore the experiences of people who have lived with HIV/AIDS for a number of years. It is argued that while different options for managing chronic illness may exist, it is not always possible or desirable for individuals to put these choices into practice. The article is based on 18 qualitative interviews with people living with HIV/AIDS who were using complementary medicine.