Love in Times of Cholera: systemic reflections on supporting families through the journey(s?) of illness (original) (raw)
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Journal of Family Therapy, 1999
This paper outlines the development of clinical understanding and a clinical model for working with families with parental physical illness. The lens of gender to explore clinical process reveals blind spots and can uncover alternative perspectives on parental illness. The authors look at the very different needs of children and parents for coherent explanations. The impact of this way of working on therapists and the importance of reflecting teams, as part of the process of working collaboratively with families, are addressed.
Whose illness is it anyway? On facing illness as a couple
Journal of Family Therapy, 2014
Whose illness is it anyway? On facing illness as a couple Jenny Altschuler a This article explores current trends in research and clinical practice regarding life-limiting illness and couple relationships; focusing on intimacy, gender, coping strategies and congruence in perceptions. A case example is used to illustrate how systemic ideas and techniques can help couples address the challenges they face and rethink what they want and need from each other. Practitioner points • In all clinical work it is important to bear witness to partners' shared and different experiences. • It is also important to reflect on resonances with one's own experiences of loss and illness. • Where couples are struggling, systemic techniques offer a way of increasing relational awareness, authenticity and mutuality.
Gender and illness: implications for family therapy
Journal of Family Therapy, 1993
This paper outlines the importance of considering gender when working with professionals and families dealing with a life-threatening or chronic illness. Clinical vignettes are used to demonstrate the importance of addressing gender to avoid attributing pathology to behaviour that could otherwise be viewed as normal. The particular contribution of the family therapist is highlighted, including suggestions about how systemic interventions can be introduced to enhance the capacity of those involved to deal with the transitions demanded by such illnesses.
Understanding the suffering of a patient with an illness: signs, context and strategies
Revista Latino-Americana de Enfermagem, 2012
The aim of this study is to understand the suffering of a patient with an illness, by using a secondary research method, that is, a qualitative meta-study. The primary data source of the meta-study includes "biographical reports". This project is based on a case study, in which the first-hand experiences of a patient with an illness were collected. The findings of the reports were compiled using the Archivos de la Memoria collection of the Index Foundation (Granada, Spain) and journals specialized in editing these materials. A selection of 20 biographical reports was targeted. The results of the meta-study show that suffering is a multidimensional process within a framework of ambiguous feelings. The suffering involves family and social network participation. Patients develop a range of strategies to overcome the illness. One of the effects is the fear of illness relapse or worsening.
Experiences in Times of Illness: Report from the Qualitative Interview Study
Springer eBooks, 2022
How did the families we interviewed after a bone marrow transplant experience the illness for which the donation from a sibling child was a cure? Some families first responded by denial of the fatal diagnosis, hoping that it was a mistake. Many families suffered from the severe loss of control in several areas of their lives. The illness changed family roles and also raised the question of how long a child should be seen as "ill". We found four different patterns of coping: toughening up, resignation, ignoring, and acceptance. Families also found different things helpful in dealing with the situation and in making sense of the events around the illness: keeping or regaining control, maintaining routines, hoping that it will be all right, or making the best of bad things. In hindsight, many families felt that the experience of the disease also had a positive impact on the family as a whole, and that individual family members could learn from it. Keywords Meanings of illness • Dealing with illness This chapter focuses on how families experience the illness of a child and how they make sense of it. How are different family members affected by the severe disease of a child? How do they describe and narrate it? How do they interpret what it means to be ill? If the transplant is successful, when does illness end? Parents, children (donors and recipients and third siblings) and healthcare professionals understand illness differently. The interviews that we conducted with 17 families about their long-term experiences with a bone marrow transplant provide ample material. First of all, it was evident that for all families in our study, the onset of the disease and the diagnosis represented a comprehensive and overwhelming crisis that hit the family without warning. The approaches then chosen by families to handle this situation were quite different and influenced by many factors. They sometimes already
Family Process, 1999
The findings of a study investigating carers' accounts about serious mental illness occurring in their family are presented. The narrative form is a primary means of ordering, structuring, and communicating illness experiences, reflecting some of the processes that carers intend to master and understand. Psychotic episodes entail a frightening disruption that forces carers to face fundamental existential, moral, and psychological issues because they call into question the continuity of lives and life-projects. This study has explored how carers articulate the consequences of a devastating experience and turn it into a meaningful event that can in some way be incorporated into the course of their life. Two types of narrative structure were identified. In stories of restitution or reparation, the experience of the event is transformed into phenomena having meaning, occupying a place in carers' lives. In chaotic and frozen narratives, the illness remains a series of random events. The effects on coping of these two narrative types were explored, as well as gender-related themes and beliefs about mastery and control. Therapeutic implications are discussed and also possible connections to other research constructs (for example, Expressed Emotion). It is argued that the concept of illness must be approached from a systemic, multidetermined perspective that includes our narrative constructions. Suffering becomes the possibility of a half opening to the other. This opening does notgive meaning to the nameless suffering, but neither does that suffering remain useless.
year: 2003, 2003
Background: Mental health care in Sweden encounters a multicultural population. Meaning given to illness may differ between patient, family and caregiver and this affects the clinical encounter and outcome of treatment. The general aim of this thesis is to explore, understand, and describe how a group of Swedish and a group of Turkish-born women, assessed as somatizing by their caregivers, and in contact with local health care in Western Stockholm, gave meaning to their illness. Additional aims are to explore participants' restructuring of illness meaning, caregivers' experiences and meanings of encountering patients using a bodily idiom for emotional distress, in a multicultural milieu, and how caregivers imparted their professional agenda of illness meaning. Methods and results: The thesis consists of five explorative qualitative studies and one paper discussing methodology. Data were collected 1997-2001. Study I explores structures of illness meaning among 8 Swedishborn women. Data were collected via 25 interviews. Some data were collected to reflect the caregivers' professional opinions. Study II explores structures of illness meaning among 10 Turkish-born women. Data were collected via 29 interviews. Some data were collected to reflect the caregivers' professional opinions. Results of Studies I and II describe illness expressions, healing strategies, meanings, and initial differences in illness meaning between participants and caregivers, caregivers' introduction of a "psychological language" of distress, and participants' efforts to grasp their caregivers' meaning. Study III explores restructuring of illness meaning among the 10 Turkish-born women from Study II. Data were collected by a secondary analysis of data from Study II and 8 new interviews. Results describe restructuring to include loss of meanings, shifts in expressions and healing strategies, and a push towards restructuring illness into a psychological or psychiatric framework. Restructuring was in many ways a disruptive experience and participants tried to bridge gaps between perspectives. In this, they perceived poor support from their social context. Study IV explores restructuring of illness meaning among the 8 Swedish-born women from Study I. Data were collected by a secondary analysis of data from Study I and 7 new interviews. Results describe restructuring to include two trends, firstly an acceptance of a psychological language of distress and secondly paying attention to stress and demanding work conditions. Restructuring was not uncomplicated and participants tried to bridge gaps between perspectives. In this, the social context was important. Study V explores caregivers' experiences and meanings of encountering patients using a bodily idiom for emotional distress in a multicultural milieu and how caregivers imparted their professional agenda of illness meaning. Data were collected via 7 focus group interviews. Results describe caregivers' experiences and meanings and that, in imparting their professional agenda, caregivers lacked support from organisational structures and clinical models for adapting work to the multicultural population and for treating mental ill health in primary care. Paper VI highlights the experiences, and reviews the literature, of using focus groups as a qualitative method in transcultural psychiatric research. Discussion and conclusion: From the results of Studies III & IV, I suggest that Antonovsky's Sense of Coherence Concept may be relevant when considering the restructuring of illness meaning, and that constructing coherence between experience, expression, and past and new illness meanings, may be significant for patients' recovery. From the results of Studies I-V, from a patients perspective, I wish to formulate the following hypotheses for the clinical encounter of emotional distress and mental illness in multicultural milieus: 1) Constructing a sense of coherence between experience, expression, past and new meanings given to illness, may be significant for patients' recovery. 2) Regarding clinical transaction of meanings, for the disruptive experience of illness, restructuring patients' illness meaning needs to be carried out in such a way as to facilitate for the patient to construct a sense of coherence between her/his illness meaning and the caregivers' medical framework. 3) The individual illness reality of the patient needs to be given an integral and important role as a collaborative resource alongside the medical framework. Implications: For the clinical encounter, results stress the significance of becoming acquainted with patients' meanings associated with illness experiences. For caregivers, in multicultural milieus, results argue for the importance of support from organisational structures and shared formulated models for adapting their work to the diversity of the population and for treating mental ill health in primary health care. For research, results point to the significance of further studies on interaction between health care and individuals and different social/cultural groups as well as on how people make sense of, use, and cope with the clinical encounter for recovery. This is of special importance for patients in an immigration situation as immigration involves being uprooted, dislocated and relocated.
Knowing ‘ME’ Knowing You: The Discursive Negotiation of Contested Illness within a Family
Journal of Depression & Anxiety, 2012
Although CFS/ME (Chronic Fatigue Syndrome/Myalgic Encephalomyelitis) has been heavily researched and contested, there is a distinct absence of studies which consider the relationship between the illness and family process. This is a striking omission given the centrality of the family to the proximal management of the illness. This study used a discourse analytic methodology to consider how talk about illness is locally negotiated by a family in the context of a single family interview. The individual in the family who had been diagnosed with CFS/ME was a sixteen yearold adolescent girl who had experienced symptoms for 18 months. Our findings suggested that family discourses about CFS/ME were polarized around the issue of intentionality. Two family members deemed the illness to represent 'genuine illness' and two regarded the illness to be intentionally used for advantage. These illness accounts were considered as both constitutive-off and constituted-by family conflict. We consider the implications of these findings in developing clinical formulations of the illness and in determining how best to support recovery. Journal of Depression and Anxiety Jo urna l o f D e pr essio n a n d A nxiety