Deafness, social network and social protection

Deafness brings consequences to deaf people's life as well as to their families, who usually has its dynamic changed in the struggle to adapt to the new needs and demands. In this sense, the families not only use their internal resources, but also, they look for help and support out of their group, in their social network. The goal of this paper is to describe the social network used by families with a deaf member in their everyday life. Also, it discusses the meaning of these networks in the framework of social protection. A qualitative research was developed, using a semi-structured interview to collect data. Eighteen parents of deaf children or teenager assisted at a center of rehabilitation were interviewed. Mapping the networks of relationships and social resources that the families of a deaf person use to deal with deafness showed the interconnection between family members, other relatives, friends, neighbors, professionals, private and public services. The networks play an important role of support and social protection to the deaf person's family in the everyday life.     

Communication about parental illness with children who have learning disabilities and behavioural problems: three case studies

Parental illness can have a profound impact on family relationships and children's behaviour. The amount and nature of communication between parents and children about the illness can play an important role, both positively and negatively, in mediating the outcomes. When children have a disability, families can be reluctant to communicate with them about family difficulties. They are often concerned about the impact that parental unavailability may have on their child's life. This paper reports on three families in which the mother was diagnosed with breast cancer and one child in the family had a disability. The extent and specific characteristics of their communication about the maternal illness with their children, behavioural changes in the children, explanations of communication strategies and attributions of behavioural changes are described. Family coping strategies are examined with reference to Lazarus's process model of stress and coping and the use of either problem-focused or emotion-focused strategies. Implications for possible clinical interventions are proposed. In particular it is suggested that families be offered consultation about: what children might understand ways in which to communicate effectively and strategies for coping with the long-term implications of serious parental illness.     

Choreographing the end of life in a neonate

As caregivers, we often have the privilege of accompanying patients and their families at the end of life. When the patients are newborn infants, the parents are totally unprepared cognitively, emotionally, and spiritually. Their experience represents uncharted territory. The concept of uncharted territory probably applies to everyone facing the death of a loved one for the first time for both the patients and their families. Providing some guidance to patient/family dyads, while simultaneously respecting their autonomy, may be helpful to facilitate healing and meaning construction during the process of bereavement. In applying an integrative universal paradigm of care when curative measures elude us, healing measures become of paramount importance. An exemplar involving a neonate is presented in this commentary; however, healing measures are relevant to patients of all ages as well as to their loved ones.     

How psychiatric patients perceive their families: a two-sided mirror

This study identifies how psychiatric patients perceive their families. We performed qualitative research, using open interview and life story narrative techniques. The data was analyzed using Thematic Analysis methodology, from which we identified two basic categories: Affection and Disaffection. Feelings related to disaffection were more frequent, allowing us to infer that the subjects suffer from difficulties in family relationships. On the other hand, the meaning of the family and the expectations held are variable and specific to each person. The study suggests the need for forms of assistance that take into account the subjective domain, by considering the perception and expectations of the patient regarding his/her family, and then planning an adequate therapeutic strategy.     

The Photo-Instrument as a Health Care Intervention

The aim of this study is to describe how hermeneutic photography and one application of hermeneutic photography in particular, namely the photo-instrument, can be used as a health care intervention that fosters meaning (re-)construction of mental illness experiences. Studies into the ways how patients construct meaning in illness narratives indicate that aesthetic expressions of experiences may play an important role in meaning making and sharing. The study is part of a larger research project devoted to understanding the photostories that result from groups of psychiatric patients using the photo-instrument. Within a focused ethnography approach we employed a qualitative design of a single case study. Text analysis of photostories was combined with observational data. Data were analyzed using hermeneutic theory. Participant observations were used for triangulation and complementarity. The interaction and collaboration between health care professionals and patients in the context of a photo group emerged as core concept that underlies the photo-instrument. The interaction triggered a reframing of meaning in the patient’s illness narrative that offered new perspectives on positive identity growth. The role of visualizing meaning in images was found to lend a dynamic power to the process and triggered a dialectic between real life circumstances and imagination played out in the context of situated action. The findings suggest that a positive reframing of meaning in illness narratives is facilitated by the photo-instrument.     

Beyond the drive to satisfy needs: in the context of health care

In the context of health care the aim of the article is to bring another meaning to the concept “need” that goes beyond the human activity; the drive to satisfy needs. Another meaning incorporates an ethical and existential nature of life phenomena. An example from empirical research on living with a chronic disease as seen from the patient’s point of view provides the basis for arguing another meaning of the concept “need”. The meanings and nuances in the life phenomena of hope, doubt and life courage are exemplified in qualitative interviews with chronic sufferers. A combination of empirical research and Danish life philosophy. Research has shown that the interaction between the professional health care provider and the patient and family may lead to a more or less unconscious and inappropriate administration of power. Research also indicates that by overlooking or ignoring the existential qualities in human life and suffering, the professional health care provider may deprive the patient and family of their room for action. To add a deeper understanding of the existential meaning of being a person with an illness, the article shows the different human dimensions concerning life phenomena and needs. Developing sensitive, situation-specific attention offers a response to the challenge faced by health care providers in collaboration with the patient: How can we open our eyes to the most significant features of the situation which arise on the onset of illness.     

Family health narratives: midlife women's concepts of vulnerability to illness

Perceptions of vulnerability to illness are strongly influenced by the salience given to personal experience of illness in the family. This article proposes that this salience is created through autobiographical narrative, both as individual life story and collectively shaped family history. The article focuses on responses related to health in the family drawn from semi-structured interviews with women in a qualitative study exploring midlife women's health. Uncertainty about the future was a major emergent theme. Most respondents were worried about a specified condition such as heart disease or breast cancer. Many women were uncertain about whether illness in the family was inherited. Some felt certain that illness in the family meant that they were more vulnerable to illness or that their relatives' ageing would be mirrored in their own inevitable decline, while a few expressed cautious optimism about the future. In order to elucidate these responses, we focused on narratives in which family members' appearance was discussed and compared to that of others in the family. The visualization of both kinship and the effects of illness led to strong similarities being seen as grounds for worry. This led to some women distancing themselves from the legacies of illness in their families. Women tended to look at the whole family as the context for their perceptions of vulnerability, developing complex patterns of resemblance or difference within their families.     

Narrative medicine in a hectic schedule

The move to patient-centered medical practice is important for providing relevant and sustainable health care. Narrative medicine, for example, suggests that patients should be involved significantly in diagnosis and treatment. In order to understand the meaning of symptoms and interventions, therefore, physicians must enter the life worlds of patients. But physicians face high patient loads and limited time for extended consultations. In current medical practice, then, is narrative medicine possible? We argue that engaging patient perspectives in the medical visit does not necessarily require a lengthy interview. Instead, a new orientation to this process that emphasizes dialogue between practitioners and patients should be considered. In this new model, the purpose of the visit is to communicate successfully and develop a mutual understanding of illness and care.     

The negotiation of death: clinical decision making at the end of life.

The ability of medical science to prolong biological life through the use of technology raises the question of how far physicians should go in treating the terminally ill patient. In clinical decision making involving the dying patient, physicians, patients and families bring various perceptions and interpretations to the situation. These different realities must be negotiated in order to define the meaning of the situation and the meaning of various medical technologies. The patient's demise becomes a negotiated death, a bargaining over how far medical technology should go in prolonging life or in prolonging death. A case study of the process of ethical decision making in the foregoing of life-supporting therapy in an intensive care setting is presented and analyzed. The decision making process in this case follows a 'cascade' pattern rather than a controlled, reflective model. While ethicists view the withholding and withdrawing of life-supporting treatment as morally equivalent, physicians tend to make a distinction based on the perceived locus of moral responsibility for the patient's death. In the author's interpretation the moral responsibility for the patient's death by withdrawing treatment is shared with family members, while the moral responsibility for the patient's death by withholding treatment is displaced to the patient. The author suggests that an illusion of choice in medical decision making, as offered by the physician, begins a negotiation of meanings that allows a sharing of moral responsibility for medical failure and its eventual acceptance by patient, family and physician alike.     

The role of narrative and metaphor in the cancer life story: a theoretical analysis

Being diagnosed with cancer can be one of those critical incidents that negatively affect the self. Identity is threatened when physical, psychological, and social consequences of chronic illness begin to erode one’s sense of self and challenge an individual’s ability to continue to present the self he or she prefers to present to others. Based on the notion of illness trajectory and adopting a Ricoeurian narrative perspective, this theoretical paper shall explore the impact of cancer disease on identity and establish the crucial importance of metaphor in the narratives of life with cancer. Findings indicate that in cancer narratives the illness experience supplies the narrative structure with temporal and spatial meeting points that make the narrative comprehensible and meaningful. Cancer forces identity changes not only from having to endure the long-term physical and psychosocial effects of the disease, but also from inevitable existential questions about life’s meaning. Improved medical knowledge today means improved ethnomedical practices. Metaphor can bridge the gap between the cancer experience and the world of technology and treatment, helping patients to symbolically control their illness.     

Applications of narrative theory and therapy to the practice of family medicine

This article presents narrative theory and therapy as an approach with significant potential for providing family physicians with additional tools to assist them in dealing with difficult clinician-patient encounters. We first define narrative therapy, then briefly describe its theoretical assumptions in relation to psychosocial concepts already familiar to family physicians. Important aspects of narrative therapy are examined, including the unique role of questioning in the narrative process; understanding and helping patients change their problem-saturated stories; renaming and externalizing the patient problem; and the use of rituals, documents, and audience in recognizing and reinforcing patient change. The article concludes with thoughts about how narrative approaches can contribute to more-healing doctor-patient relationships.     

“Kindhearted People,Please Save My Family”: Narrative Strategies for New Media Medical Crowdfunding

ABSTRACT

With the development of new financing methods in the networked society, and due to the underdeveloped social security system in China, more and more patients and their families have to choose crowdfunding as an important way to raise treatment funds. Using thematic narrative analysis, this paper studied 100 texts of medical crowdfunding on Easy Fundraising from February 27, 2018 to May 1. It is found that the requests used a series of strategies including: constructing the identity of the patient in order to build a disadvantaged image worthy of help; using tragic narration based on the traditional Chinese cultural elements such as “family concept” and “filial piety” and contrast of the patients’ experience before and after the illness to mobilize the sympathy of potential donors; and downplaying the needs itself in order to maintain patients’ self-esteem.     

Health information work and the enactment of care in couples and families affected by Multiple Sclerosis

Given the considerable emphasis placed on informed choice, the management of health information has become an increasingly important part of living with chronic illness. This paper explores the intra‐familial dynamics of managing health information in the context of chronic illness. Drawing on 77 interviews with people affected by Multiple Sclerosis in the UK (patients, partners, family members and close friends), we show how families develop their own idiosyncratic information practices, including the careful, at times strategic, seeking, sharing and withholding of information. We describe how one individual, most commonly either the patient or their partner, often takes primary responsibility for managing growing quantities of health information. Doing this is a complex task, yet its dynamics within the family unit remain invisible and unacknowledged. In this paper we: (a) stress the importance of understanding information management in chronic illness as a collective process across all those affected, patients as well as carers; (b) conceptualise the process of managing health information in this context as ‘health information work’; and (c) analyse it as part of the wider care practices families engage in and as a form of care in its own right.     

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.     

Social work practice and chronic pediatric illness.

The role of social workers in a pediatric chronic illness setting is presented. The difference between acute and chronic illness is explored, with emphasis on the ramifications of these differences for social work practice. Early assessment of patients and families provides the social worker with a data base from which to select an appropriate intervention with families. Of primary importance is the amelioration of feelings of helplessness, dependency, and isolation. This may be accomplished by helping families anticipate problems, mobilizing resources to help, and encouraging families to share their experiences with other families. Because the medical system, particularly in a teaching hospital, may not provide continuity of care for patients, the relationship of the social worker to patient and family, and resulting knowledge of the family, becomes an important resource in the provision of high-quality care.     

Health Care Professionals' Perceptions of Child Life Specialists

The hospital environment presents many stressors for ill children and their families. For this reason, the child life profession focuses on the psychosocial care of hospitalized children and their families. However, little is known about perceptions of the child life profession in the medical setting. Thus, the purpose of this study was to examine the perceptions of child life specialists by members of the health care profession. Results indicated several discrepancies between child life professionals' perceptions of their responsibilities and other health care professionals' perceptions of child life responsibilities. Child life specialists were viewed as important for patient psychosocial well-being, although perceived as having little power in the health care team. Child life specialists can use this information to educate other professionals in the medical field about their responsibilities, including patient and family support, advocacy, and patient psychological preparation.     

Illness narratives: fact or fiction?

There is currently considerable renewed interest in narrative analysis in the humanities, social sciences and medicine. Illness narratives, particularly those of patients or lay people, are a particular focus in health related settings. This paper discusses the background to this interest, especially its roots in critiques of medical dominance and distinctions between disease and illness, drawn by sociologists and anthropologists in the 1970s. The current emphasis on patient or personal narratives can also be seen to stem from changes in morbidity patterns, the expansion of information about disease and illness, and in public debates about the effectiveness of medicine. The paper then goes on to outline a framework for analysing illness narratives. This involves exploring three types of narrative form: 'contingent narratives' which address beliefs about the origins of disease, the proximate causes of an illness episode, and the immediate effects of illness on everyday life; 'moral narratives' that provide accounts of (and help to constitute) changes between the person, the illness and social identity, and which help to (re) establish the moral status of the individual or help maintain social distance; and 'core narratives' that reveal connections between the lay person's experiences and deeper cultural levels of meaning attached to suffering and illness. Here, distinctions are drawn between such sub forms as heroic, tragic, ironic and comic, and regressive/progressive narratives. Finally, the paper discusses some of the methodological issues raised by narrative analysis. Given the complex character of illness narratives, their social and psychological functions, together with the motivational issues to which they relate, it is suggested that they constitute a major challenge for sociological analysis. From this viewpoint current claims about narrative analysis in medicine need to be treated with caution.     

Accommodation, resistance and transcendence: three narratives of autism

This paper presents a narrative analysis of autism. It follows much of the literature on illness and narrative by emphasising the moral quality of illness narratives and the role it plays in creating coherence out of the disordering effects of autism on family life. In particular, the significance of narratives as "moralizing antidotes" to the experience of marginality and their linkages to the cultural "master narratives" of science, politics and faith are stressed. The three narratives presented display both conformity and non-conformity with the official narrative of autism offered by the autistic treatment centre where the research was based. Accordingly, they are described as narratives of accommodation, resistance and transcendence.     

Redefining hope for the terminally ill

This paper discusses how hospice social workers assist patients and families in finding new hope and meaning in their lives as care goals turn from cure to comfort. Assessment factors important to the redefinition process and intervention strategies are explored. Hope is defined as the positive expectation for meaning attached to life events with the emphasis on meaning instead of life events. The author seeks to demonstrate the importance of meaning to the feeling of hope and the possibility of socially constructing meaning to alleviate the traditional medical perspective that hope revolves around the outcome of disease.