Co‐construction of chronic illness narratives by older stroke survivors and their spouses

Illness narratives have mainly focused on individual patients’ accounts, and particularly those of people experiencing the onset of chronic illness in mid‐life. However, a growing number of older people are spending their later life with their partner, with both experiencing complex morbidities. We examine the shared creation of meanings among older stroke survivors and their spouses and the implications for individual and couple identity. Joint biographical narrative interviews were held with 13 stroke survivors aged 75–85 and their spouses. The analysis examined both narrative content and narrative style. Three main types of co‐presentation of identity were identified. The ‘united couple’ described couples who pulled together and emphasised their accommodation of the stroke and normality as a couple, despite often considerable disability, and was strongly underpinned by collaborative interaction in interviews. Caring relationships were distinguished as ‘positive’, involving self‐reliant couples who took pride in how they managed and ‘frustrated’ in couples who emphasised the difficulties of caring and hardships experienced and were characterised by a conflictual style of narrative. We argue that joint interviews provide new forms of data that extend notions of how illness is lived and demonstrates how the marital relationship can mediate the experience of chronic illness and disability and its impact on identity.     

Becoming incapacitated? Long‐term sickness benefit recipients and the construction of stigma and identity narratives

The transition to becoming ‘incapacitated’ and receiving sickness benefits represents a significant shift in an individual's narrative. Drawing on in‐depth interviews with 25 long‐term sickness benefits recipients in North‐East England, this article focuses upon how individuals perceived and managed becoming ‘incapacitated’, particularly in relation to stigma and identity. The findings show that participants negotiated changes to their identity in varying ways – constructing new dimensions of self, validating their illness and pursuing aspirations. Importantly, the transition onto sickness benefits does not inevitably result in a shift to a negative identity. The term incapacity can include many realities, challenging the notion of sickness benefit recipients as being passively dependent. Instead, an active, sometimes very functional sense of self can be accompanied by a positive identity for recipients, which is especially important, in a context of the rhetoric surrounding ongoing welfare reform and sickness benefits recipients in the UK.     

‘If I can walk that far’: space and embodiment in stories of illness and recovery

Illness and recovery transform embodied experience, and transform the experience of space. Space, in turn, is a valuable resource in the telling of an illness narrative. Starting from a phenomenological perspective that takes the body to be the centre of experience, and hence of selfhood and storytelling, this article offers an argument for and an approach to analysing space as a narrative resource in stories about illness and recovery. Using a case study of one woman's stories about her amputation, it demonstrates how both narrated space and narrating space can be used as devices to structure the narrative and position its characters and interlocutors to construct the narrator's embodied experiences and identities. The article reveals intersections between embodied experience, space, and narrative identity construction, offering a new way of attending to illness narratives and a new way of engaging with narrative space.     

‘Just because a doctor says something,doesn't mean that [it] will happen’: self‐perception as having a Fertility Problem among Infertility Patients

Only some individuals who have the medically defined condition ‘infertility’ adopt a self‐definition as having a fertility problem, which has implications for social and behavioural responses, yet there is no clear consensus on why some people and not others adopt a medical label. We use interview data from 28 women and men who sought medical infertility treatment to understand variations in self‐identification. Results highlight the importance of identity disruption for understanding the dialectical relationship between medical contact and self‐identification, as well as how diagnosis acts both as a category and a process. Simultaneously integrating new medical knowledge from testing and treatment with previous fertility self‐perceptions created difficulty for settling on an infertility self‐perception. Four response categories emerged for adopting a self‐perception of having a fertility problem: (i) the non‐adopters – never adopting the self‐perception pre‐ or post‐medical contact; (ii) uncertain – not being fully committed to the self‐perception pre‐ or post‐medical contact; (iii) assuming the label – not having prior fertility concerns but adopting the self‐perception post‐medical contact; and (iv) solidifying a tentative identity – not being fully committed to a self‐perception pre‐medical contact, but fully committed post‐medical contact. (A virtual abstract of this paper can be viewed at: https://www.youtube.com/channel/UC_979cmCmR9rLrKuD7z0ycA ).     

Reshaping of self: a pendular reconstruction of self and identity among adults with traumatic spinal cord injury

This paper describes the impact of chronic illness on self and identity among 35 adults with traumatic spinal cord injury (paraplegic), living in the community. The reconstruction of self and identity post spinal cord injury is conceptualised as a pendulum. The pendulum of self represents a dynamic model of identity reconstruction. The pendulum suggests that identity reconstruction is a process that swings back and forth like a pendulum between the nondisabled and disabled aspects of self. The pendulum depicts five predominant identity views (outcomes). These are: 1) the former self; 2) the supernormal identity; 3) the disabled identity as total self; 4) the disabled identity as an aspect of the total self; and 5) the middle self. These identity views are influenced by five experiences (processes). These are: 1) loss; 2) sustainment; 3) integration; 4) continuity and 5) development of the self. It is suggested that frameworks of identity reconstruction or reconstitution which include both process and outcome components may elucidate more clearly the impact of chronic illness on self and identity. In addition, this pendulum model of identity reconstruction is an alternative approach to traditional sociological conceptions of identity reconstruction.     

Multiple Realities: A Relational Narrative Approach in Therapy With Black–White Mixed‐Race Clients

Notions of a racial identity for persons with one Black and one White parent have assumed the existence of only a singular identity (first Black and later biracial). Emerging empirical research on racial identity formation among members of this group reveals that multiple identity options are possible. In terms of overall health, the level of social invalidation one encounters with respect to racial self‐identification is more important than the specific racial identity selected. Here a relational narrative approach to therapy with Black–White mixed‐race clients who experience systematic invalidation of their chosen racial identity is presented through a detailed case illustration.     

Post-traumatic stress symptoms in childhood brain tumour survivors and their parents

Objectives This study aimed to investigate post‐traumatic stress symptoms (PTSS) in childhood brain tumour survivors and their parents. A further aim was to explore the relationship between objective illness parameters, parent–child interactions, coping styles and PTSS. Methods A cross‐sectional correlational design was employed. Fifty‐two childhood brain tumour survivors, aged 8–16, and 52 parents completed a battery of questionnaires designed to assess quality of parent–child interactions, monitoring and blunting attentional coping styles and PTSS. Results Over one‐third (35%) of survivors and 29% of their parents reported severe levels of PTSS (suggestive of post‐traumatic stress disorder ‘caseness’). Increased parent–child conflict resolution for survivors and number of tumour recurrences for parents independently predicted the variance in PTSS. Conclusions For a substantial proportion of brain tumour survivors and their parents the process of survivorship is a considerably distressing experience.     

Burnout as an identity rupture in the life course: a longitudinal narrative method

The methodological article explores the process by which identity rupture generated by work-related burnout is encountered and managed over time. The article presents an in-depth case study based on follow-up interviews with a woman in her sixties. The study attempts to discover what kinds of continuities and changes in meaning making patterns are included in the burnout process and how these meaning making patterns are used to perform and negotiate identity stabilities and changes in the life course. The study is part of a larger longitudinal qualitative investigation following a group of Finnish middle-aged employees in the context of burnout rehabilitation. As a result of analysis, four thematically and temporally overlapping meaning making patterns were identified: defining and legitimating illness, encountering and resisting the ‘vulnerable’ Other in self, developing and testing a new identity, and recapturing the past self. The burnout trajectory seems to consist of temporally stable meaning making patterns, such as legitimation of illness, preservation of the past self and resistance of the patient role. However, it also includes changes in meaning making that imply positively interpreted self-change. The study contributes to the methodological development of qualitative health and life course research.     

The adaptation process after traumatic brain injury An individual and ongoing occupational struggle to gain a new identity

Abstract

The aim of this study is to understand better how individuals with traumatic brain injury make sense of their adaptation process and their performance of occupations within this process. For this study, four participants were interviewed twice. Thereafter analyses following a narrative approach led to the construction of four individual narratives. The results indicate that the adaptation process following traumatic brain injury is (1) a necessary struggle to gain a new identity; (2) facilitated by engagement in familiar occupations in familiar environments; (3) a protracted learning process that continues long after rehabilitation ends; (4) individual and situated. The results suggest that healthcare professionals including occupational therapists should: allow individuals with traumatic brain injury to test and practise their abilities within their own home environments; provide them with the necessary space to practise on their own; guide them in using their own and new strategies in a way that is both efficient and personally satisfying. Finally, this study discusses whether rehabilitation services should be offered over a protracted period of time. Professional support following the rehabilitation period—precisely the period in which they are trying to establish a meaningful existence with their disabilities—could be a more useful path to follow.     

Changing bodies, changing narratives and the consequences of tellability: a case study of becoming disabled through sport

This article explores the life story of a young man who experienced a spinal cord injury (SCI) and became disabled though playing the sport of rugby union football. His experiences post SCI illuminate the ways in which movement from one form of embodiment to another connects him to a dominant cultural narrative regarding recovery from SCI that is both tellable and acceptable in terms of plot and structure to those around him. Over time, the obdurate facts of his impaired and disabled body lead him to reject this dominant narrative and move into a story line that is located on Norrick's (2005) upper-bounding side of tellability. This makes it transgressive, frightening, difficult to hear, and invokes the twin processes of deprivation of opportunity and infiltrated consciousness as described by Nelson (2001). These, and the effects of impairment, are seen to have direct consequences for the tellability of embodied experiences along with identity construction and narrative repair over time. Finally, some reflections are offered on how the conditions that negate the telling of his story might be challenged.     

Narratives and healing: exploring one family's stories of cancer survivorship

This study investigates the narratives of one couple who lived through life-changing events following a cancer diagnosis. The narratives of the cancer survivor and her husband are explored as they struggle to cope with their situation, provide support for one another, and consider their changing personal identities. This research addresses the communication dilemmas that often occur when family members, friends, and providers do not know how to respond to an individual diagnosed with cancer. The rationale for this study is threefold. First, this study advocates the need for learning about the composition of survivor identities over the course of a life-threatening illness. Second, this study seeks to understand how illness survivors and their family members use narratives as a method of communicating their changing identities. Finally, communicating about illness is often perceived as 'taboo', and this study may encourage others to be a part of the participants' stories and learn more about why those stories are often concealed. We learn from these three narratives that supportive relationships are central to healing and that it is through communication among family members that identities are composed and recomposed throughout the illness journey. This research affects communication, social support, identity, and emotion literature and is aligned with human appraisal theories as well. Finally, it offers insights into the ways in which we talk about, hear about, and learn about illness.     

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.     

Beyond Adjustment: Authoring a (Re)learned Reality

A survivor of a traumatic brain injury makes sense of his injury and reflects on the unique individuality of injury.     

Benefit finding in survivors of childhood cancer and their parents: further empirical support for the Benefit Finding Scale for Children

Background Diagnosis of a life‐threatening condition has been linked to post‐traumatic stress. However, only recently has it been acknowledged that positive outcomes including post‐traumatic growth or benefit finding may also occur. The aim of our study was to extend previous work describing benefit finding among survivors of childhood cancer, by determining the contribution of demographic and medical variables and associations between child benefit finding and parent post‐traumatic growth. Methods Survivors of any child cancer (leukaemia, central nervous system or solid tumour; age 12–15 years; completed treatment >2 years) were recruited from routine follow‐up clinics and asked to complete questionnaires [Benefit Finding Scale for Children (BFSC), quality of life (QOL), post‐traumatic stress (PTS), illness perception and optimism]. Parents completed parallel measures to describe their own post‐traumatic growth (PTG), QOL, PTS and illness perception. Results Forty‐eight survivors and parents completed questionnaires (response rate: 81%). The BFSC showed good internal reliability (alpha = 0.91). Diagnosis of leukaemia, greater optimism and reports that the illness still affects their life today were associated with higher scores on the BFSC among survivors themselves. For parents, perceptions of how much the illness still affects them emotionally was associated with PTG. There was no association between children's benefit finding and parents' PTG. Conclusions The BFSC is a useful and reliable instrument to assess positive outcomes after cancer in children. The extent to which survivors are optimistic and perceive on‐going effects of the illness on their daily lives is significantly associated with the ability to find benefit after end of treatment.     

Prevalence and predictors of disability for Māori 24 months after injury

Objective: To investigate post‐injury disability prevalence and identify pre‐injury and injury‐related predictors 24 months post‐injury among Māori Prospective Outcomes of Injury Study participants. Methods: Participants were recruited from New Zealand's no‐fault injury insurer. Pre‐injury and injury‐related characteristic information was obtained from participants at three and 24 months post‐injury. The World Health Organization Disability Assessment Schedule was used to measure disability. Multivariable models were developed to estimate relative risks of post‐injury disability. Results: Of 2,856 participants, 566 were Māori. Analyses were restricted to 374 Māori with pre‐injury and 24‐month post‐injury disability data available. Pre‐injury, 9% reported disability compared to 19% 24 months post‐injury. Strong predictors of increased risk of disability 24 months post‐injury were having ≥2 chronic conditions pre‐injury and having trouble accessing healthcare services after injury. Hospitalisation for injury and having inadequate pre‐injury household income were other predictors. Conclusions: Māori experience considerable disability 24 months post‐injury. Pre‐injury socio‐demographic, health and psychosocial, and injury‐related characteristics independently predict post‐injury disability and provide focus for future research and interventions to improve Māori post‐injury outcomes. Implications for public health: Despite having had access to services, injured Māori experienced considerable long‐term disability. Pre‐injury and injury‐related factors predict long‐term disability and should be the focus to reduce the post‐injury disability burden for Māori.     

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.     

Twelve‐month post‐injury outcomes for Māori and non‐Māori: findings from a New Zealand cohort study

Objective : To examine the prevalence of key outcomes among Māori and non‐Māori 12 months post‐injury, and to estimate the risk of these outcomes for Māori compared to non‐Māori. Methods : The Prospective Outcomes of Injury Study recruited 2,856 New Zealand residents from five regions of New Zealand. This paper examines outcomes at 12 months post‐injury for the Māori (n=405) and non‐Māori (n=1,875) groups. Results : High levels of adverse outcomes at 12 months post‐injury were observed in both groups. A greater proportion of Māori than non‐Māori were experiencing disability, problems with mobility and psychological distress 12 months post‐injury. After controlling for pre‐injury and injury‐related characteristics, Māori were found to be at greater risk of disability, problems with mobility, having trouble performing usual activities, psychological distress and reporting ‘barely/not enough’ household income at 12 months compared to non‐Māori. Conclusion : Explanations for higher risk of these poor outcomes are unclear. Future research to identify potential explanations will include experiences with health services and rehabilitation support following injury, subsequent injury and illness, and major life events post‐injury. Implications : Adequate post‐injury care focused on physical and psychological health and financial security is required to reduce the burden experienced by Māori due to injury.     

Regenerative medicine: Stroke survivor and carer views and motivations towards a proposed stem cell clinical trial using placebo neurosurgery

Background

Few studies explore stroke survivor views and motivations towards stem cell therapy (SCT). This qualitative study explores the views and motivations of both stroke survivors and their partners/carers towards a proposed 2‐arm Phase III Randomised Controlled Trial (RCT) comparing intracerebral insertion of stem cells with placebo neurosurgery in stroke survivors with disability.

Objective

To explore views and motivations towards a proposed 2‐arm stem cell trial and identify factors that may impede and enhance participation.

Design

This study adopts a naturalistic design to explore the complexity of this field, employing a participatory action‐research approach comprising a specialized Conversation (World) Café form of focus group. Data were collected via 5 Conversation Cafés with stroke survivors (age 40‐75) and partners/carers between June and October 2016. Of 66 participants, 53 (31 male, 22 female) were stroke survivors and 13 (6 female, 7 male) were partners/carers. Qualitative data were analysed using a thematic approach.

Discussion and Conclusion

Stroke survivor views and motivations reflect anticipation of the personal and future benefits of regenerative medicine. Partners/carers sought to balance the value of stroke survivor hope with carrying the weight of hope as carer, a conflict burden adding to known caregiver burden. All participants expressed the need for during and post‐trial psychological support. This study provides a rare opportunity to explore the prospective views and motivations of stroke survivors and their partners/carers towards a proposed Phase III 2‐arm RCT. This adds weight to qualitative evidence exploring capacity, consent, decision making, perceptions of treatment risk and supports required for clinical trial participation.