Being a parent of an adult son or daughter with severe mental illness receiving professional care: parents' narratives

The aim of this study was to illuminate the meaning of parental care-giving with reference to having an adult son or daughter with severe mental illness living in a care setting. The parents were asked to narrate their relationship to offspring in the past, in the present, and their thoughts and feelings concerning the future. The study was guided by a phenomenological hermeneutic perspective. The meaning of parental care was illuminated in the themes 'living with sorrow, anguish and constant worry', 'living with guilt and shame', 'relating with carer/care; comfort and hardships' 'coming to terms with difficulties' and 'hoping for a better life for the adult child'. Parental care-giving emerged as a life-long effort. The narratives revealed ongoing grief, sorrow and losses interpreted as chronic sorrow. The narratives disclosed a cultural conflict between the family system and the care system, which was interpreted as a threat to the parental role, but also experiences of receiving comfort and having confidence in the care given. Experiences of stigma were interpreted from the way of labelling illness, narrated experiences of shame and relations with the public and mental health professionals. Parents' persisting in the care-giving role, striving to look after themselves and expressing hopes for the future were interpreted as a process of coming to terms with difficulties. Results suggest that mental health professionals need to be aware of their own attitudes and treatment of families, improve their cooperation with, and support to families, and provide opportunities for family members to meet one another.     

Biographical value: towards a conceptualisation of the commodification of illness narratives in contemporary healthcare

Illness narratives play a central role in social studies of health and illness, serving as both a key theoretical focus and a popular research method. Despite this, relatively little work has gone into conceptualising how and why illness narratives – be they in books, websites, television or other media – are commodified in contemporary healthcare and its social environment; namely, how distinctive forms of value are generated in the production, circulation, use and exchange of illness narratives. In this article we propose the notion of biographical value as a first step towards conceptualising the values attributed to illness narratives in this context. Based on a secondary analysis of 37 interviews with people affected by 15 different health conditions in the UK (all of whom have shared their illness experiences across various media) and drawing on understandings of value in research on the bioeconomy and the concept of biovalue in particular, we sketch out how epistemic, ethical and economic forms of value converge and co‐constitute each other in the notion of biographical value and in broader economies of illness experiences.     

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.     

Developing a worker role: Stories of four people with mental illness

Background and Aims:  Work plays an important role in adults' well-being, irrespective of health status. Vocational rehabilitation can enable people with mental illness to return to open employment. A narrative approach was used to explore how individuals with a mental illness made sense of their work-related experiences.
Methods and Results:  Four Clubhouse members in open employment for at least 6 months completed in-depth, semistructured interviews, from which narratives were created to reveal events, significant persons and actions that assisted these individuals to resume work. Woven into the participants' stories were four 'impelling forces' contributing to a sense-of-self as a worker. These impelling forces were: support from significant others, the personal meaning of work, experiences within the Clubhouse programme, and the ongoing struggle with illness. Implications for occupational therapy practice are discussed.
Conclusion:  The findings of this study urge occupational therapists and others to provide opportunities to provide on-going support to people with a mental illness who seek paid employment.     

Using photographs to capture women's experiences of chemotherapy: reflecting on the method

This article examines the value of using the photo-elicitation method for generating health-related narratives. Drawing on research in which women kept a photographic record of their experiences of chemotherapy treatment for breast cancer, this research explored how this method (a) produced elaborate accounts of illness experiences through an exploration of the process of representing experiences and through an interrogation of the images themselves; (b) allowed an opportunity to capture experiences over time and a way of capturing the past, which can then be reexplored from the present; (c) enabled patients to retain control over their images of themselves and how they choose to represent their experiences; and (d) provided a window into the private, everyday experiences of patients away from a health care setting.     

The role of narrative in discussing end-of-life care: eliciting values and goals from text, context, and subtext

This article reports a qualitative study of elderly veterans' perceptions of and preferences for end-of-life care. At a large urban Veterans Affairs (VA) hospital, we asked 30 veterans and 30 health care providers to define 4 terms in the VA form of the advance directive: life-sustaining treatment, terminal condition, state of permanent unconsciousness, and decision-making capacity. The veterans commonly used narratives to construct meaning, and analysis showed that the resulting texts had both a subtext (the values and goals driving the narrative) and a context (life experiences that filter and shape the current interpretation). We found that all 3 components--text, subtext, and context--are crucial to understanding the central theme of an individual's narrative and the decision-making processes associated with it. In this article we examine 1 lengthy narrative using Chafe's (1994) notion of intonation units. We then present a series of short narratives to demonstrate 3 subthemes that emerged from the data: quality of life versus quantity of life, benefit of treatment versus cost of treatment, and, most common, control versus lack of control. Our goal was to demonstrate the centrality and usefulness of storytelling in the patient-provider interaction when listeners are willing to consider the subtext and context of the story and its role in the decision-making process. As demonstrated in this study, deciphering people's stories gives us insight into their values, the mental constructs that drive their decision making, and the goals that they have for their own health care.     

Shifting landscapes: immigrant women and postpartum depression

Utilizing an ethnographic narrative approach, we explored in the Canadian context the experiences of three groups of first-generation Punjabi-speaking, Cantonese-speaking, and Mandarin-speaking immigrant women with depression after childbirth. The information emerging from women's narratives of their experiences reveals the critical importance of the sociocultural context of childbirth in understanding postpartum depression. We suggest that an examination of women's narratives about their experiences of postpartum depression can broaden the understanding of the kinds of perinatal supports women need beyond health care provision and yet can also usefully inform the practice of health care professionals.     

The significance and consequences of having painful and disabled joints in older age: co-existing accounts of normal and disrupted biographies

Abstract This paper examines the meanings of symptoms for people with osteoarthritis. The study comprised 27 in‐depth interviews with men and women aged between 51 and 91 years (median age = 76) and draws on previous sociological work about experiences of chronic illness, disability and ageing. In particular, the distinction proposed by Bury between ‘meaning as significance’ (the significance and connotations associated with illness) and ‘meaning as consequence’ (problems created for the individual by activity restriction and social disadvantage), provides a useful framework to examine the biographical aspects of symptoms. We found that older respondents portrayed their symptoms as a normal and integral part of their biography, but they also talked about the highly disruptive impact of symptoms on their daily lives. We consider how these co‐existing accounts of meaning make sense in the context of cultural connotations of ageing and the implications for meeting health care needs of older people with osteoarthritis.     

Shifting Landscapes: Immigrant Women and Postpartum Depression

Utilizing an ethnographic narrative approach, we explored in the Canadian context the experiences of three groups of first-generation Punjabi-speaking, Cantonese-speaking, and Mandarin-speaking immigrant women with depression after childbirth. The information emerging from women's narratives of their experiences reveals the critical importance of the sociocultural context of childbirth in understanding postpartum depression. We suggest that an examination of women's narratives about their experiences of postpartum depression can broaden the understanding of the kinds of perinatal supports women need beyond health care provision and yet can also usefully inform the practice of health care professionals.     

The emotional journey of women experiencing a breast abnormality

Using grounded theory, a multidisciplinary study team compared the narratives of 30 women who had recently experienced a breast cancer scare. Even though 10 women received a benign diagnosis, all women reported a difficult time prediagnosis, characterized by an array of emotions and contemplation of the meaning of life. Diagnosis separated the two groups with emotional relief dominant for the benign group and intensification of emotions for the cancer group. For those diagnosed with cancer, three factors contributed to arriving at a point of acceptance about the diagnosis and treatment: (a) sustained coping mechanisms; (b) a belief system that shifted the meaning of the cancer experience; and (c) the ability to manage non-cancer-related stressful events. Implications include the need for tailored biopsychosocial treatments that focus on reducing stress, enhancing support systems, reframing beliefs about the illness, and providing the opportunity for the women to talk about their experiences.     

The experiences of close relatives living with a person with serious chronic illness

Living with serious chronic illness has a directly threatening effect on the life course of healthy relatives. The aim of this study was to elucidate the meaning of close relatives' experiences of living with a person with serious, chronic illness. Using a narrative approach, the authors interviewed 13 spouses and 1 daughter about the meaning of their experiences. They used a phenomenological hermeneutic method to interpret the interview text. The structural analysis revealed three major themes: A Shrinking Life, Forced to Take Responsibility, and Struggling to Keep Going. Close relatives in this study seemed to be living lives characterized by a reduced sense of individual freedom and an increased sense of responsibility for the care of the ill person. It means struggling to obtain the strength to manage their duty and an inner sense of community and of solidarity. The authors interpret the findings in the light of the works of philosophers who have described ethical demands and natural love between people.     

Meaning construction in palliative care: the use of narrative, ritual, and the expressive arts

Individuals and families make sense of the world and their experiences through a process of meaning construction. Narrative is an important means of constructing meaning. The diagnosis of life-threatening or life-altering illness often forces revision in the life narrative and the reconstruction of meaning. This article discusses the process of meaning construction and highlights the use of narrative, the expressive arts, and ritual to create meaning and connection. All members of the palliative care team play an important role in helping patients and families tell the stories of their illness and their lives and find meaning and purpose at the end of life. The use of rituals is discussed along with verbal and art-based methods for eliciting patient and family narratives. The relationships among patient, family, and practitioner are seen as powerfully therapeutic and potentially transformative for all involved.     

Restorying the self: an exploration of young burn survivors' narratives of resilience

The results of this exploratory study reflect a shift from public health studies that aim to examine the risk and prevalence of burn injury, toward eliciting survivors' subjective meaning-making processes beyond the injury event. We drew on a narrative framework to explore how young survivors' experiences of burn injury led to reconstructions of self and shifts in thinking about others and the world. Although participants' narratives revealed elements of heightened self-awareness, need for acceptance, and desire for recognition, these stood alongside counter narratives denoting positive, transformative, and resilient aspects of healing that reflected a rebirth of the self, life having purpose, and psychospiritual growth. A multidimensional and relational framework for resilience acknowledges the "deficient," but also recognizes the pathways to growth, healing, meaning, and purpose. This shift toward person-centered meanings has value in informing interventions beyond the immediate "wound care," toward the survivors' lifelong (re)negotiation of identity, appearance, psychological adjustment, and social reintegration.     

"Jesus will fix it after awhile": meanings and health

There are many myths and stereotypes related to the health of people of color in the United States. Many research studies are done and statistics proliferate on the health status of non-dominant groups. Few studies attempt to understand the meaning systems of poor and working class African American women in relationship to health and health care. This study uses an ethnographic approach including narrative analysis of life history interviews in order to examine how the life experiences and belief systems of a small group of poor and working class African American women from a storefront church in Seattle, Washington, inform and influence the women's opinions and interactions with the dominant white health care system. This paper will examine specific dimensions of the women's belief systems and discuss how these beliefs are applied as the women interpret, confront and examine the meaning of health and the meaning of their own experiences in specific health care encounters. The women's belief systems, learned and reinforced within the context of their daily lives, enable the women to offer a unique critique of the health care system, as well as to maintain a powerful subjectivity in the face of an objectifying system, the dominant white western health care system.     

The communication of palliative care for the elderly cancer patient

Palliative care (PC) is often recommended by physicians for their elderly patients who are terminally ill. In contrast to hospice care, which precludes the use of any curative treatment at life's end stages, PC seeks primarily to comfort patients and to keep them pain free, yet it does not necessarily preclude medical treatment. It does seek to attend to patients' physical as well as psychological, emotional, spiritual, and existential needs in an attempt to enhance overall quality of life. A review of current literature in PC for oncology patients, elderly and otherwise, reveals a curious irony: Although PC plausibly entails a holistic, patient-centered approach to health care, much of the research on PC and, apparently, many of the practices in PC focus almost exclusively on the biomedical approach to patient care, particularly in regard to pain and symptom management. Furthermore, few methods in PC research incorporate patients' narratives and lived experiences in the final stages of their lives. We argue that a holistic, patient-centered approach must guide research in PC, including the treatment of elderly patients as "active interpreters, managers, and creators of the meaning of their health and illness" (Vanderford, Jenks, & Sharf, 1997, p.14) and of the meaning of their lives.     

Understanding maternal breastfeeding confidence: a Gadamerian hermeneutic analysis of women's stories

Our aim in this Gadamerian hermeneutic study was to understand maternal breastfeeding confidence and its meaning through listening to women's voices describing their experiences within the context of the United States. We asked 13 women, aged 23 to 42 years, who had breastfed a child within the last 2 years to tell us their breastfeeding stories. Women experienced maternal breastfeeding confidence as a dynamic interaction between their expectations, their infant(')s breastfeeding behavior, and sources of support. They described experiences that enhanced or diminished their confidence. Health professionals can use these findings to plan approaches that promote and support maternal breastfeeding confidence.     

Typologies of rural lay-health advocacy among rural women in Australia

BACKGROUND: Public health advocacy effects changes in health behaviors and outcomes through applying health promotion expertise to specific groups. Advocacy occurs through the provision of tools to empower those who are either experiencing, or at risk of, a particular health status. RESEARCH OBJECTIVES: Health-care experiences of women living in rural Victoria, Australia, were explored in the context of generally poor access to reproductive health services. Women's experiences are investigated within the theoretical framework of lay-health advocacy, i.e. relying on individual health care experience and knowledge to promote and improve the health care of others. METHODOLOGY: The study applied a qualitative design, and a self-identified sample of women was recruited through network sampling techniques. Fifty-seven women participated in in-depth interviews. RESULTS: Three types of lay-health advocacy emerged. Advocacy-seekers expected the researchers to use their experiences of poor health-care to educate health professionals to provide better quality care. Advocacy providers used their knowledge and experiences to take an active part in promoting the health-care of other women. Story-tellers expected their narratives to empower other women or unidentified social groups to feel less isolated in their health care experiences. DISCUSSION: In providing narratives of their health-care, women were critical of social inequalities facing people living in rural Australia. Lay-health advocates offer a cost-effective and appropriate option for reducing adverse health outcomes within resource-poor settings. Informed by women's narratives, we suggest strategies to enhance rural women's health-care.     

Creating New Normals in Cancer Care: A Review of The Art of the Possible

Palliative care (PC) is often recommended by physicians for their elderly patients who are terminally ill. In contrast to hospice care, which precludes the use of any curative treatment at life's end stages, PC seeks primarily to comfort patients and to keep them pain free, yet it does not necessarily preclude medical treatment. It does seek to attend to patients' physical as well as psychological, emotional, spiritual, and existential needs in an attempt to enhance overall quality of life.

A review of current literature in PC for oncology patients, elderly and otherwise, reveals a curious irony: Although PC plausibly entails a holistic, patient-centered approach to health care, much of the research on PC and, apparently, many of the practices in PC focus almost exclusively on the biomedical approach to patient care, particularly in regard to pain and symptom management. Furthermore, few methods in PC research incorporate patients' narratives and lived experiences in the final stages of their lives. We argue that a holistic, patient-centered approach must guide research in PC, including the treatment of elderly patients as "active interpreters, managers, and creators of the meaning of their health and illness" (Vanderford, Jenks, &; Sharf, 1997, p.14) and of the meaning of their lives.     

Disruption foreclosed: older women's cancer narratives

A challenge has emerged to Bury's (1982) conceptualization of chronic illness as biographical disruption. The idea that certain life circumstances--notably older age or the presence of significant health and social problems--render the experience of chronic illness biographically 'continuous' or 'reinforcing' has gained currency in the social study of chronic illness. This article draws from a qualitative study with women diagnosed with cancer in their 70s or 80s. Respondents' narratives suggest that a long life, especially a life characterized by struggle, does provide a context for the assessment of cancer as non-disruptive. However, the study offers evidence that a long life characterized by sufficiency may also be associated with an assessment of cancer as non-disruptive, and that older age and hardship sometimes render chronic illness especially problematic.Centrally, the article examines respondents' oft-cited commitment to avoid ;dwelling' on illness, highlighting how broad cultural and moral discourses, patterns of social interaction and structures of power combine to foreclose older women's accounts of disruption.