Kari Nyheim Solbrække

(Un)doing gender in a rehabilitation context: a narrative analysis of gender and self in stories of chronic muscle pain

Abstract Purpose: To explore how gender appears in the stories of self-told by men and women undergoing rehabilitation for chronic muscle pain. Method: The material, which consists of qualitative interviews with 10 men and 6 women with chronic neck pain, was analyzed from a gender sensitive perspective using narrative method. The analysis was inspired by Arthur Frank’s typologies of illness narratives (restitution, chaos and quest). Findings: The women’s stories displayed selves that were actively trying to transcend their former identity and life conditions, in which their pain was embedded. Their stories tended to develop from “chaos”, towards a quest narrative with a more autonomous self. The selves in the men’s stories appeared to be actively seeking a solution to the pain within a medical context. Framed as a restitution narrative, rooted in a biomedical model of disease, the voice often heard in the men’s stories was of a self-dependent on future health care. Our findings contribute greater nuance to a dominant cultural conception that men are more independent than women in relation to health care. Conclusion: Understanding the significance of gender in the construction of selves in stories of chronic pain may help to improve the health care offered to patients suffering from chronic pain. Implications for Rehabilitation Patients tell stories that powerfully communicate their particular illness experiences. Cultural expectations of femininity and masculinity play a significant role with regard to how the patients construct their stories, which may be important to health professionals’ perceptions of the patients’ problem. Health care professionals should listen carefully to the patient’s own story and be sensitive to the significance of gender when trying to understand these people’s health problem.

Troubled bodies--troubled men: a narrative analysis of men's stories of chronic muscle pain.

Purpose: To examine how men present themselves as patients with chronic pain and how the men’s subjective experience of pain interplay with dominant norms of masculinity. Method: The material consists of qualitative interviews with 10 Norwegian men on rehabilitation from chronic neck pain. The data is subjected to narrative analysis combined with a gender-sensitive perspective. Findings: The men’s accounts of chronic pain were narrated as a series of events, displaying physical impairments and demanding work and troubled private affairs. Through rich descriptions of presumably objective facts, like heredity, physical injury and the character of the men’s work, and comparatively little information about the men’s personal experiences of pain and distress, a rational and self-controlled masculinity is displayed. However, extrapolation of the analysis also brought out how human suffering, such as chronic headaches, the losing of control and of oneself, is narrated in the men’s stories. Conclusion: Men’s stories of chronic muscle pain display a subtle balance between following dominant norms of masculinity, such as being rational and in self-control, and a need to express vulnerability as human beings. We argue that health care professionals should be sensitive to the dynamics of subjectivities and cultural norms of gender within patients’ illness stories. Implications for Rehabilitation Stories of chronic muscle pain are individually constructed and culturally formed at the same time. Men’s stories of chronic pain display a subtle balance between rational reasoning and the exercise of self-control, adhering to dominant norms of masculinity and a human need to express subjective experiences of suffering and vulnerability. Health care professionals should be sensitive to how the role of gender in men’s presentation of chronic pain may contribute to keeping subjective experiences concealed.

Family caregivers’ accounts of caring for a family member with motor neurone disease in Norway: a qualitative study

BackgroundMotor neurone disease (MND) is a progressive neurological disease causing muscle wasting, gradual paralysis, respiratory failure. MND care is demanding, complex and involves a variety of care tasks. Family members may experience significant and enduring strain. We conducted a qualitative study to understand more about family caregivers’ work and sense of responsibility, exploring family caregivers’ accounts of caring for a family member with MND.MethodsWe recruited and interviewed a total of 25 participants from Norway, including 17 current and eight bereaved family caregivers. Drawing on theories of care by Corbin and Strauss, we analysed the data by a theoretical reading of the material to identify different types of care work.ResultsWe found that caregivers were engaged in five lines of care work that could be parallel or closely interconnected: i) immediate care work; ii) seeking information and clarity about the disease; iii) managing competing obligations; iv) maintaining normality; and v) managing external resources and assistance. Caregivers’ priorities were shaped by their interactions with the person with MND, available assistive devices, the development of the illness, and utilisation of paid care. Care work had a symbolic and moral meaning for caregivers, and was associated with self-worth and respect from others. Caregivers tried to balance their own expectations and others’ expectations without being overwhelmed by care work.ConclusionsA changing and potentially chaotic situation for family caregivers may compromise their capacity to utilise supportive services. Using the lines of work as a framework to assess caregivers’ preferences and priorities, health professionals may tailor assistance and support to family members caring for persons with MND.

Unstable terminality: negotiating the meaning of chronicity and terminality in motor neurone disease

This paper explores the meaning of chronicity and terminality in motor neurone disease (MND), also known as amyotrophic lateral sclerosis (ALS). There is no known cause or cure for MND, and expected survival is 2-5 years, but several interventions may improve or prolong life. This study draws on qualitative interview data with health professionals in hospitals and primary care, and family carers, in Norway. The actors emphasised chronic and terminal aspects in subtly different ways along the entire illness trajectory, also when recounting the trajectory in retrospect. As a consequence of improved health services and medical technology the distinction between chronicity and terminality has become more vague and sometimes ambiguous. We suggest the concept unstable terminality to describe this ambiguity. While MND is a fatal diagnosis; it may be contested, as contingencies and interventions create an indefinite time scope. The instability creates challenges for primary care which is dependent on prognostic information to organise their effort; hospitals tackle the instability by pre-scheduled consultations allowing for avoidance of an explicit prognosis. Some carers experienced what we understand as a disruption within the disruption, living with chronic and terminal illness simultaneously, which made the limbo phase more challenging to overcome.

Staying Healthy From Fibromyalgia Is Ongoing Hard Work

Fibromyalgia syndrome (FMS) is a chronic musculoskeletal pain condition. Although studies have reported that some patients can become healthy again, little is known about what they tell about their lives after having FMS. In this study, we interviewed eight Norwegian women who had all recovered from FMS about their experiences when ill and subsequently being healthy. Inspired by narrative methods, we then conducted a thematic narrative analysis. The findings indicate that although women reported that life was better than before, they also reported investing considerable effort in remaining healthy. When ill, they struggled to maintain the routines of everyday life. Being healthy again, they put great effort into avoiding illness through diet, exercise, and relaxation. In conclusion, remaining healthy requires ongoing hard work to maintain the body, as well as profound changes in everyday life. At the same time, the narratives show continuity in the informants’ self-presentation as hard-working women.

Treatment of hemophilia: A qualitative study of mothers’ perspectives

In Norway, boys with hemophilia usually begin treatment after their first bleeding episode. Boys with severe hemophilia usually start prophylactic treatment around 18–24 months. Health professionals administer factor concentrate initially, but when boys are around 4 years old most parents start treating their children at home. There is a lack of research on how parents, and especially how carrier mothers, experience the medical treatment for their sons’ hemophilia. Our aim was to investigate how carrier mothers experience this treatment in the hospital setting and at home.

Breast-cancer-isation explored: Social experiences of gynaecological cancer in a Norwegian context

This articles point of departure is recent claims that breast cancer survivorship displaying positivity and self-growth represents the gold standard for all forms of cancer survivorship in English-speaking Western cultures. An interview study of Norwegian women regarding gynaecological cancer followed by hysterectomy is used to explore whether this process is taking place beyond this setting. Results show that the womens experiences of having to display survivorship in this manner are not as notable as found in English-speaking Western countries, neither is their experience of social othering. Reasons for this may be strong norms of social egalitarianism marking Norwegian culture and breast cancer informational campaigns that have not yet totally defined Norwegian norms for how to survive cancer. At the clinic and in the public sphere, however, the women experience gynaecological cancer as clearly having lower status than breast cancer, leading to a strong sense that the bodily site of their disease is taboo. Hence, as found in English-speaking cultures, the complex embodied nature of having gynaecological cancer and life beyond treatment seems to be silenced by the media and medical institutions. Finally, implications for future research and health care related to cancer survivorship are also discussed.

Tiredness and fatigue during processes of illness and recovery: A qualitative study of women recovered from fibromyalgia syndrome

ABSTRACT Fibromyalgia syndrome (FMS), a chronic musculoskeletal pain condition, is often accompanied by fatigue. In this study, inspired by narrative approaches to health and illness, we explore how women who have regained their health after FMS describe tiredness along a storyline from before they fell ill, through their illness, recovery process, and present-day health. The data derive from qualitative interviews with eight Norwegian women who previously suffered from FMS but who no longer had the condition at the time of interview. We undertook a narrative analysis to understand the complexity of the stories about tiredness and fatigue and on this basis identified a storyline based on four sub-narratives: 1) Alarming but ignored tiredness (before illness); 2) paralyzing fatigue (during illness); 3) making sense of fatigue (recovery process); and 4) integrating tiredness into life (today). The findings highlight participants’ different understandings and meanings of tiredness and fatigue and the ways in which these link past, present, and future. Significantly, a clear distinction between tiredness and fatigue was not always found. Overall, the storyline that emerges from the narratives is about balancing tiredness/fatigue with everyday life, and how this unfolds in different ways across the span of FMS, from falling ill to recovering and regaining health.

Experiences of Being Heterozygous for Fabry Disease: a Qualitative Study.

Little is known about the experiences of women with Fabry disease. The aim of this study was to explore women’s experiences of being heterozygous for Fabry disease. We used an explorative qualitative study design and selected ten Norwegian women who were known heterozygous for Fabry disease to participate. We conducted in-depth semi-structured interviews and analyzed the interviews using inductive thematic analysis. We found that learning about one’s heterozygous status may be devastating for some. However, for most of the participants, heterozygous status, as well as doctors’ acceptance of symptoms in women heterozygous for Fabry disease, provided an explanation and relief. Although many women did not consider themselves ill, they wished to be acknowledged as more than “just carriers.” The participants were grateful for enzyme replacement therapy, although it had its burdens regarding time, planning, and absences from school or work. Women with Fabry disease felt that the lack of knowledge among healthcare professionals about Fabry disease was frustrating and worrisome. These findings suggest that healthcare professionals should acknowledge the different ways women react to their diagnosis, and be aware of the personal costs of receiving treatment.

Absent organs—Present selves: Exploring embodiment and gender identity in young Norwegian women's accounts of hysterectomy

In this paper, we explore how younger women in Norway construct their embodiment and sense of self after hysterectomy. To do this, we conducted in-depth interviews with eight ethnic Norwegian women aged between 25 and 43 who had undergone hysterectomy. In line with a broad phenomenological approach to illness, the study was designed to explore the trajectories of the womens illness with a specific focus on concrete human experience and identity claims from a subjective point of view. In analysing the stories, we encountered feelings of suffering due to the loss of the uterus as well as profound side-effects, such as menopause. However, we also found evidence of relief from being treated for heavy bleeding and serious illness. In order to accentuate the individual voices in these illness stories, we chose a case-oriented analysis in line with Radley and Chamberlain (2001) and Riessman (2008). From this, two main seemingly contradictory storylines stood out: They have removed what made me a woman versus Without a uterus, I feel more like a woman. We also identified heteronormativity as an unstated issue in both these storylines and in the research data as a whole. Acknowledging diversity in the way women experience hysterectomy is important for a better understanding of the ways in which hysterectomy may affect women as humans as well as for developing more cultural competent healthcare services for this group.In this paper, we explore how younger women in Norway construct their embodiment and sense of self after hysterectomy. To do this, we conducted in-depth interviews with eight ethnic Norwegian women aged between 25 and 43 who had undergone hysterectomy. In line with a broad phenomenological approach to illness, the study was designed to explore the trajectories of the womens illness with a specific focus on concrete human experience and identity claims from a subjective point of view. In analysing the stories, we encountered feelings of suffering due to the loss of the uterus as well as profound side-effects, such as menopause. However, we also found evidence of relief from being treated for heavy bleeding and serious illness. In order to accentuate the individual voices in these illness stories, we chose a case-oriented analysis in line with Radley and Chamberlain (2001) and Riessman (2008). From this, two main seemingly contradictory storylines stood out: They have removed what made me a woman versus Without a uterus, I feel more like a woman. We also identified heteronormativity as an unstated issue in both these storylines and in the research data as a whole. Acknowledging diversity in the way women experience hysterectomy is important for a better understanding of the ways in which hysterectomy may affect women as humans as well as for developing more cultural competent healthcare services for this group.