A family perspective on parental psychosis: An interpretative phenomenological analysis study.

OBJECTIVES: While one third of people with a psychotic disorder are a parent, there has been little research to date examining the consequences of this from a whole family perspective. This study investigates families where a parent has experienced an episode of psychosis and compares and contrasts the family members' perspectives. DESIGN: This study was rooted in phenomenology and data were derived from in-depth semi-structured interviews. METHODS: Parents with a psychotic disorder who had a child aged between 3 and 11 in a UK NHS Trust were invited to take part in the study. Semi-structured interviews were conducted with these parents, with their child (if they were between the ages of 8 and 11), and with their partner or another close family member. Data were analysed using multiperspectival interpretive phenomenological analysis (m-IPA). RESULTS: Thirteen participants took part comprising of five parents, four children, three partners and one grandmother. Four themes were developed using m-IPA: (1) Parental psychosis impacts the whole family, (2) Psychosis and my role as a parent, (3) Secrecy and concealment surrounding parental psychosis, and (4) Pressures and vulnerabilities within the family system. CONCLUSION: Psychosis had a negative impact on all family members and secrecy existed between family members. The children in particular only had partial information about their parent's mental illness, which left them worried and confused. More work is needed to support these families to explain psychosis to the children.

A solidão conectada: a experiência da depressão em um grupo fechado do Facebook / Connected loneliness: experiences of depression in a closed Facebook group / La soledad conectada: la experiencia de la depresión en un grupo cerrado de Facebook

Resumo A depressão, considerada uma doença grave e de alta prevalência, configura-se como problema de Saúde Pública em todas as regiões do mundo por ser a maior causa de incapacidade e por ter relações causais com as condições sociais estabelecidas em alguns países. O objetivo deste estudo foi analisar a experiência da depressão em um grupo virtual fechado do Facebook. Esta pesquisa, de natureza netnográfica, revelou os sentidos e particularidades de um grupo fechado do Facebook traduzidos por quem sofre de depressão. Como campo de investigação, possibilitou compreender a particularidade da experiência da depressão mediante debates coletivos entre os membros desse grupo por se sentirem com mais liberdade para falar de si e do outro.(AU)

Abstract Considered a serious and highly prevalent disease, depression is a worldwide public health problem, being related to social conditions in some countries and the leading cause of disability. The aim of this study was to investigate experiences of depression in a closed Facebook group. This netnographic study revealed the meanings and particularities of a closed Facebook group from the perspective of people suffering depression. The study allowed us to understand the particularities of the experience of depression from the collective discussions held between the group members, as they felt more free to talk about themselves and others.(AU)

Resumen La depresión, considerada una enfermedad grave y de alta prevalencia, se configura como un problema de Salud Pública en todas las regiones del mundo, por ser la mayor causa de incapacidad y por tener relaciones causales con las condiciones sociales establecidas en algunos países. El objetivo de este estudio fue analizar la experiencia de la depresión en un grupo virtual cerrado de Facebook. Esa investigación, de naturaleza netnográfica, reveló los sentidos y particularidades de un grupo cerrado de Facebook traducidos por quien sufre de depresión. Como campo de investigación, hizo posible comprender la particularidad de la experiencia de la depresión a partir de las discusiones colectivas entre los miembros de ese grupo, por sentirse con más libertad para hablar sobre sí mismos y sobre el otro.(AU)

Understanding low mobilization for non-communicable diseases among people living with NCDs: A qualitative study on hypertension in urban South India.

There is low civil society mobilization for NCD policies in low- and middle-income countries (LMICs) despite a growing NCD burden. While existing research explains low mobilization largely through constraints such as inadequate funding and capacity at the organizational level, we explore the issue from the perspective of people living with NCDs and ask how lay understandings of hypertension may inform potential mobilization for multisectoral policy actions by people living with hypertension. To explore this question, we develop a theoretical framework that casts mobilization as a function of people's recognition of disease importance, attribution of NCD risk factors to government policies, beliefs about who bears responsibility for NCD prevention and management, and beliefs around efficacy of multisectoral policies. We present findings from 45 semi-structured interviews with people living with hypertension in a qualitative study in Chennai, India. Our thematic analysis reveals that respondents can dedicate limited time and resources to actions around hypertension. People living with hypertension also strongly internalize responsibility for developing and managing their condition and focus primarily on achieving lifestyle changes. Instead of demanding multisectoral policy action around hypertension, respondents recommend that government actions focus on measures that enable their lifestyle changes, such as increasing awareness and health care capacities, and express doubts about the efficacy of government policies. Our findings expand existing theories around mobilization by revealing how people's own understanding of their illness, its risk factors and their underlying drivers, as well as their perception of challenges in NCD policy making can present barriers to mobilization around multisectoral policies. Theory on health social movements would benefit from a deeper integration of individual perspectives and a closer consideration of the specific challenges of living with NCDs given the local context.

Understanding the Impact of Initial COVID-19 Restrictions on Physical Activity, Wellbeing and Quality of Life in Shielding Adults with End-Stage Renal Disease in the United Kingdom Dialysing at Home versus In-Centre and Their Experiences with Telemedicine.

Early in the coronavirus-2019 (COVID-19) containment strategy, people with end-stage renal disease (ESRD) were identified as extremely clinically vulnerable and subsequently asked to 'shield' at home where possible. The aim of this study was to investigate how these restrictions and the transition to an increased reliance on telemedicine within clinical care of people living with kidney disease impacted the physical activity (PA), wellbeing and quality of life (QoL) of adults dialysing at home (HHD) or receiving in-centre haemodialysis (ICHD) in the UK. Individual semistructured telephone interviews were conducted with adults receiving HHD (n = 10) or ICHD (n = 10), were transcribed verbatim and, subsequently, thematically analysed. As result of the COVID-19 restrictions, PA, wellbeing and QoL of people with ESRD were found to have been hindered. However, widespread support for the continued use of telemedicine was strongly advocated and promoted independence and satisfaction in patient care. These findings highlight the need for more proactive care of people with ESRD if asked to shield again, as well as increased awareness of safe and appropriate PA resources to help with home-based PA and emotional wellbeing.

'My relationships have changed because I've changed': biographical disruption, personal relationships and the formation of an early menopausal subjectivity.

Early menopause (EM) or premature ovarian insufficiency (POI) can disrupt gendered and age-related expectations associated with perceived 'normative' biographies for young adult women, with implications for subjectivity and relationships. While previous qualitative research has concentrated on the impacts of EM/POI on biography and sense of self, in this article, we examine the enmeshment of personal relationships with the formation of early menopausal subjectivities. Drawing on research exploring concepts of 'biographical disruption' and personal relationships, and theoretical work on social norms and subject formation, we present findings from a narrative thematic analysis of 25 interviews with women diagnosed with spontaneous or medically induced EM/POI. We identify three main narrative 'types' of subjective and relational experience in response to the 'disruption' of EM/POI: interlude and continuity; disruption and adaptation; and disruption and ambivalence. Women's accounts of their experience of EM/POI indicate that the formation of early menopausal selves is mediated by the extent to which women and those around them identify with gendered norms related to reproduction and age. Consistent with theoretical perspectives that consider the self as relationally produced, we argue that the subjective and relational dimensions of EM/POI are intertwined and must be understood in tandem.

Stumbling Into Adulthood: Learning From Depression While Growing Up.

Depression manifests in distinct ways across the life course. Recent research emphasizes how depression impedes development during emerging adulthood. However, our study-based on 40 interviews with emerging adults from multiple regions in the United States, analyzed following grounded theory-suggests a more complex narrative. Increasing experience with cycles of depression can also catalyze (a) mature perspectives and coping mechanisms that protect against depression's lowest lows; (b) deeper self-knowledge and direction, which in turn promoted a coherent personal identity; and (c) emergence of a life purpose, which fostered attainment of adult roles, skill development, greater life satisfaction, and enriched identity. Our synthesis reveals how depression during emerging adulthood can function at once as toxin, potential antidote, and nutritional supplement fostering healthy development. Our central finding that young adults adapt to rather than recover from depression can also enrich resilience theory, and inform both social discourse and clinical practice.

Using autoimmune strategically: Diagnostic lumping, splitting, and the experience of illness.

Experience of illness and sociology of diagnosis literatures offer valuable insights into how people live with chronic illness. In this article, we argue that investigating autoimmune illnesses contributes to the sociological understanding of illness experiences and diagnosis practices. Autoimmune is a broad category of illnesses in which a person's immune system identifies healthy cells as pathological. Drawing on 45 in-depth interviews with people who live with autoimmune illnesses, this article shows how both broad diagnostic classifications (lumping) and narrow diagnostic classifications (splitting) are integral to diagnostic work and illness experiences. Combining the illness experience and sociology of diagnosis literatures, we theorize diagnosis as an iterative process in which people strategically use broad illness categories such as autoimmune in combination with specific illness categories such as multiple sclerosis a way to negotiate heterogeneity and uncertainty and to make sense of what is happening in their bodies. In this article, we argue that in an era of specialization, broad diagnostic categories can help both patients and clinicians navigate the experience of illness.

Embracing a 'new normal': the construction of biographical renewal in young adults' narratives of living with a stoma.

Stoma surgery can be a life-changing procedure due to bodily changes and related psychological responses. Despite previous literature identifying unique challenges for young adults living with a long-term condition, no studies have explored the biographical implications of stoma formation. Drawing on interviews with 13 young adults, aged 18-29 years, with a stoma resulting from inflammatory bowel disease, this article aims to generate new theoretical insights in understanding the process of biographical (re)construction and the wider implications of stoma formation among this group. Data analysis combined constructivist grounded theory and narrative analysis. Whilst two narratives display 'biographical suspension' characterised by a distancing of self from their stoma, the majority of narratives highlight positive transformations in the young adults' conceptions of self; which we explain through the concept of 'biographical renewal'. The liberating effects of stoma surgery allowed young adults to reclaim aspects of their pre-illness selves, yet also reconfigure a new, altered sense of self, culminating in a 'new normal'. However, psychological distress also co-existed alongside these positive representations, revealing a tension that young adults attempt to reconcile through narrativising their experiences. Our findings have implications for the identification and management of the psychological needs of young people with a stoma.

Doenças genéticas raras com abordagem qualitativa: revisão integrativa da literatura nacional e internacional / A qualitative approach to rare genetic diseases: an integrative review of the national and international literature

Resumo Atualmente, há entre seis e oito mil adoecimentos catalogados por doenças raras, sendo que 80% são de origem genética e entre os estudos sobressaem os de natureza quantitativa e biomédica. Objetivou-se identificar e descrever as características dos estudos científicos, no Brasil e internacionalmente, com abordagem qualitativa, acerca das doenças genéticas raras publicados em bases indexadas na área da saúde e das ciências sociais. Utilizaram-se as bases de dados Scielo, Lilacs, Medline, PubMed, BDENF, Web of Science, Scopus e CINAHL, com os descritores: "Qualitative Research" e "Rare Disease", entre 2013-2018. Foram selecionados 171 artigos, classificados por ano, país, idioma, tipo de doença rara, estratégia de coleta de dados, área de conhecimento e tema. As produções revelam a pertinência dos estudos qualitativos sobre doença genética rara no seu potencial para subsidiar a organização, a tomada de decisões e a formação em saúde, de maneira que respondam às necessidades sociais e individuais da comunidade. É importante, todavia, desenvolver mais estudos, principalmente brasileiros, que abordem as condições genéticas raras, relevando as vivências e os afetamentos nas interações pessoais, familiares, profissionais e organizacionais perante os modos próprios e efetivos de cuidar.

Abstract There are currently between six and eight thousand illnesses classified as rare diseases, 80% of which are of genetic origin and among the studies those of a quantitative and biomedical nature stand out. The objective of this study was to identify and describe the characteristics of scientific studies in Brazil and worldwide using a qualitative approach on rare genetic diseases published in indexed databases in the area of health and social sciences. The Scielo, Lilacs, Medline, PubMed, BDENF, Web of Science, Scopus and CINAHL databases were researched between 2013-2018 using the key words "Qualitative Research" and "Rare Disease." A total of 171 articles, classified by year, country, language, rare disease type, data collection strategy, knowledge area and theme were selected. The texts reveal the relevance of qualitative studies on rare genetic diseases in their ability to support organization, decision-making and health training in a way that responds to the social and individual needs of the community. It is important, however, to conduct further studies, especially within Brazil, that address rare genetic conditions, revealing the experiences and how they affect the personal, family, professional and organizational interactions in terms of the proper and effective modes of care.

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.

Participant experiences with a new online modified-Delphi approach for engaging patients and caregivers in developing clinical guidelines.

BACKGROUND: Patient engagement in clinical practice guideline (CPG) development has increased significantly in recent years. However, only a few patients and caregivers join CPG development groups. OBJECTIVE: To describe participant experiences with a novel online, scalable approach for patient and caregiver engagement in CPG development. DESIGN: We developed and tested the RAND/PPMD Patient-Centeredness Method (RPM), a novel online modified-Delphi approach to patient engagement in CPG development that consists of an optional idea generation round and two rating rounds interspersed with an online discussion round. SETTING AND PARTICIPANTS: Using the online ExpertLens™ system, we ran 2 concurrent panels of patients and caregivers of individuals with Duchenne Muscular Dystrophy (DMD). MAIN OUTCOME MEASURES: We surveyed all 95 panel participants about their participation and satisfaction with the process. We also conducted telephone interviews with 25 participants. RESULTS: Participants expressed satisfaction with various ExpertLens™ features, noting that the system fostered lively interaction among them. Panelists also appreciated participating in an educational, interactive and convenient discussion forum that allowed them to share their opinions on the importance and acceptability of different recommendations. The RPM was viewed as empowering by patients and their caregivers who felt it would be useful for CPG developers. DISCUSSION AND CONCLUSION: The results of our study show the overall participant satisfaction with a novel, scalable, online approach to engaging patients and caregivers in CPG development, which allows them to share their perspectives and lived experiences using a rigorous, systematic and iterative way that is similar to how clinicians provide their input.

When patients' invisible work becomes visible: non-adherence and the routine task of pill-taking.

While the biographical dimensions of chronic illness have been well researched, the concrete dimensions of patients' work have not been as thoroughly investigated as yet. With the growing concern for self-management, such research would be timely. This study aims to better understand patients' invisible work by highlighting the causes of unintentional non-adherence as well as strategies for adherence. For this purpose, it defines medical treatment adherence as the repetition of the pattern of tasks through which a patient succeeds, in a technical sense, in taking the right medication at the right time, in the right amount, for the right duration. Applying a failure modes and effects analysis approach to 48 semi-structured interviews with Dutch patients, it shows the negative impact of schedule changes, pressure, positioning changes, lack of backup pills and lack of verification tools. Symmetrically, it highlights the role of anchoring, sequencing, positioning, cueing, correcting and verifying. This result points to the need for an analytical approach of patients' work and treatment adherence that would build on the role of routines in organisations and in the workplace.

The cycle of uncertainty: parents' experiences of childhood epilepsy.

Uncertainty has been highlighted as an important aspect of experiences of chronic conditions generally and epilepsy in particular. However, there is little research exploring the extent to which uncertainty features in the experiences of family members or the form that this uncertainty may take. Drawing on in-depth semi-structured interviews with 27 parents who had a child with epilepsy, this article explores parents' experiences of uncertainty and the way in which their views on childhood and epilepsy interacted and contributed to the uncertainties they experienced. It is argued that the occurrence of epilepsy during childhood shaped parents' experiences as they used their 'social clocks' in order to interpret symptoms. Furthermore, parents described what has been termed a 'cycle of uncertainty'. Indeed, the combination of epilepsy (a condition with various inherent forms of uncertainty) and childhood (a period in the life course that is seen as a time of development) meant that parents could not be sure which changes in their child were a result of the condition and which were a normal part of the ageing process. Overall, this article demonstrates that it is important to contextualise experiences of chronic conditions in relation to different stages in the life course.

A licence to drive? Neurological illness, loss and disruption.

The sense of freedom and independence that being able to drive generates may be taken for granted by many until it is threatened by illness. Drawing on the 'mobility turn' in social sciences that emphasises the social and emotional significance of the car (Sheller and Urry , ), this article presents secondary analysis of narratives of driving and its significance across four neurological conditions (epilepsy, Parkinson's disease, transient ischaemic attack and motor neurone disease). Taking an interactionist approach we explore how the withdrawal of a driving licence can represent not just a practical and emotional loss of independence, but also loss of enjoyment; of a sense and feeling of 'normal' adulthood and social participation; and of an identity (in some cases gendered) of strength and power. Conversely the ability to keep driving can maintain an unbroken thread of narrative, for example enabling people with speech difficulties to feel and look normal behind the wheel. Moments of pleasure and normality illuminate the importance of examining the micro-strands of disruption illness can cause.

Impactos de adoecimento de longa duração: experiência de adultos jovens com Leucemia Mieloide Aguda / Impacts of long-term illness: experience of young adults with Acute Myeloid Leukemia

Resumo O presente artigo analisa os impactos materiais e imateriais imersos na experiência de adultos jovens com um adoecimento de longa duração - Leucemia Mieloide Aguda. Decorre de pesquisa mais ampla, inspirada na Fenomenologia de Alfred Schutz. Os dados foram obtidos por entrevistas em profundidade com quatro jovens, de 20 a 28 anos, em fase de manutenção no tratamento oncológico, entre novembro de 2013 a janeiro de 2014, em Mato Grosso. Os resultados enfocam aspectos marcantes dos impactos na experiência como o processo de descoberta da enfermidade em que o diagnóstico provocou sentimentos mobilizados por ideias sobre uma doença grave. Seguem-se os impactos na aparência devidos ao tratamento, sobressaindo a queda de cabelo e as estratégias cotidianas de enfrentamento, bem como o aumento ou a perda de peso. Por fim, é marcante o impacto da iminência da morte diante da letalidade da doença e o testemunho da ocorrência em pessoas conhecidas, colocando-a como possibilidade concreta para si, mas também como sobreviventes. Os impactos são os efeitos e as transformações na vida das pessoas e seu entorno e evocam (re) ações, contudo, diluem-se na experiência compondo-a, e não sendo homogênea, sua abordagem privilegia a singularidade inscrita em biografias contextualizadas.

Abstract This article analyzes the tangible and intangible impacts involved in the experience of young adults diagnosed with a long-term illness, namely Acute Myeloid Leukemia. It follows on from broader research, inspired by the Phenomenology of Alfred Schutz. The data were obtained through in-depth interviews with four young adults, aged between 20 and 28, who were in the maintenance phase of cancer treatment between November 2013 and January 2014 in the State of Mato Grosso. The results focus on striking aspects of the impacts of the experience during the process of becoming aware of the illness in which the diagnosis provoked feelings mobilized by ideas regarding a serious illness. This is followed by the impacts on appearance due to the treatment, especially hair loss and day-to-day coping strategies, as well as weight gain or loss. Finally, there is the marked impact of the imminence of death due to the lethality of the disease and the testimony of the occurrence in friends and family, but also for the survivors. The impacts are the effects and transformations in the lives of people and their relations and evoke (re)actions, however, they are diluted in the experience composing it, and not being homogeneous, its approach addresses the singularity encountered in contextualized biographies.

"I'm a normal autistic person, not an abnormal neurotypical": Autism Spectrum Disorder diagnosis as biographical illumination.

Building on Michael Bury's "biographical disruption" and Kathy Charmaz's "loss of self," which describe the deteriorative impacts of chronic illness on perceptions of selfhood, I propose "biographical illumination"-a transformed conceptualization of self and identity that is facilitated by but extends beyond medical meaning, enriching personal biography and social relationships. The concept is perhaps most applicable to experiences with neurological and neurodevelopmental conditions in which brain difference and personhood are perceived to be closely intertwined. In this study, biographical illumination is used to describe the experiences of autistic adults who learned of their Autism Spectrum Disorder (ASD) diagnosis during teen years or adulthood. Through an ASD lens, participants found explanation for their atypicality and developed a more valued self-concept. Learning of the condition did not disrupt their biography; rather, it became integral to and constitutive of it. With a new self-concept, participants re-gauged personal expectations for normalization and accessed communities of alike others, forging relationships that affirmed identity.

Understanding lay perspectives on socioeconomic health inequalities in Britain: a meta-ethnography.

The links between socioeconomic circumstances and health have been extensively studied in Britain but surprisingly few studies consider lay perspectives. This is problematic given popular efforts to reduce health inequalities appear to be based on assumption that public understanding is limited (this is evident in efforts to raise awareness of both 'upstream' causes of health inequalities and health-damaging behaviours). The results of this meta-ethnography, involving 17 qualitative studies, fundamentally challenge this assumption. We show, first, that people who are living with socioeconomic disadvantage already have a good understanding of the links between socioeconomic hardship and ill-health. Indeed, participants' accounts closely mirror the research consensus that material-structural factors represent 'upstream' determinants of health, while 'psychosocial' factors provide important explanatory pathways connecting material circumstances to health outcomes. Despite this, people living in disadvantaged circumstances are often reluctant to explicitly acknowledge health inequalities, a finding that we suggest can be understood as an attempt to resist the stigma and shame of poverty and poor health and to (re)assert individual agency and control. This suggests that work to increase public awareness of health inequalities may unintentionally exacerbate experiences of stigma and shame, meaning alternative approaches to engaging communities in health inequalities discussions are required.

"A reação é o mais difícil, é pior que hanseníase": contradições e ambiguidades na experiência de mulheres com reações hansênicas / "The reaction is the most difficult, it is worse than leprosy": contradictions and ambiguities in the experience of women with leprosy reactions

Resumo Estudo de abordagem socioantropológica, analisa a experiência de mulheres com reações hansênicas, quadro agudo de evolução crônica que acomete cerca da metade das pessoas que têm hanseníase. Foram entrevistadas sete mulheres com reações, acompanhadas por um serviço de referência em Cuiabá-MT, região com maior número de casos no Brasil. A análise foi realizada na modalidade temática e os resultados abrangem o contexto em que vivem, o aparecimento e interpretação das reações, as repercussões e dilemas de um "tratamento que adoece". As reações imbricam-se na trajetória da hanseníase e são marcadores do adoecimento por intensificarem a dor ou por causarem marcas e eritemas pelo corpo. Ao explicarem sua origem, as reações são inseridas em contextos abrangentes e situações de estresse ou tristeza. O tratamento torna-se um problema na medida em que afeta como elas se veem, processo que é acrescido e incorporado à situação estigmatizante causada pela hanseníase. Ter reações pode ser considerado "pior" do que ter hanseníase, pois nem sempre é possível prevê-las ou controlá-las; por isso, assume-se que a noção de cura requer outros sentidos, baseados na reconstrução cotidiana. Reitera-se a importância de abordar o problema em perspectiva que favoreça uma atenção integral aos adoecidos.

Abstract Study of socio-anthropological approach on the experience of women with leprosy reactions, an acute chronic evolution that affects half of those who have leprosy. Seven women with reactions were interviewed, accompanied by a reference service in Cuiabá-MT, the region with the highest number of cases in Brazil. The analysis was carried out in the thematic modality and the results cover the context in which they live, the appearance and interpretation of the reactions, the repercussions and dilemmas of a "treatment that gets sick". Reactions are embedded in the trajectory of leprosy and are markers of illness by intensifying pain or causing bruising and erythema throughout the body. In explaining their origin, reactions are inserted into broad contexts and situations of stress or sadness. Treatment becomes a problem as it affects how they look, a process that is added and incorporated into the stigmatizing situation caused by leprosy. Having reactions can be considered "worse" than having leprosy, since it is not always possible to predict or control them and therefore, it is assumed that the notion of cure requires other senses, based on daily reconstruction. It reiterates the importance of approaching the problem in a perspective that favors a comprehensive care for the patients.

'It seems like you're going around in circles': recurrent biographical disruption constructed through the past, present and anticipated future in the narratives of young adults with inflammatory bowel disease.

Biographical disruption and related concepts continue to be widely drawn upon in explaining how individuals experience chronic illness. Through in-depth examination of the narrative experiences of two young adults with inflammatory bowel disease (IBD), this article aims to contribute to the continuing theoretical elaboration of biographical disruption, and in turn offer new insights into how young adults experience this condition. The cases are analysed from an interaction-based, constructionist perspective, through which it is argued that the relapse-remission nature of IBD can give rise to a particular form of recurrent biographical disruption, constructed in narrative through a complex configuration of past, present and anticipated future experiences. The two young adults are found to give different meaning to this recurrent disruption in terms of its significance and consequences - whilst Samuel represents an ongoing cycle of profound disruption and biographical reinstatement, Edith normalises the cycle of disruption and its role in her ongoing biography. Therefore, moving beyond the notion of 'normal illness' observed in previous research literature, the concept of 'normal recurrent disruption' is proposed. Finally, it is argued that this recurrent biographical disruption may be experienced particularly severely in young adulthood owing to the unique pressures and expectations of this lifestage.

Neither 'foolish' nor 'finished': identity control among older adults with HIV in rural Malawi.

Prevalence of HIV after age 50 is considerable, especially in southern Africa. Negative social constructions of HIV in older age, and the health consequences of ageing with the virus, mean that having HIV presents a challenge for many people's roles and social memberships, threatening to disrupt their sense of self. Using constructivist grounded theory and qualitative data from rural Malawi, this paper describes how older men and women deal with these identity challenges. Drawing on a symbolic interactionist framework, it uses identity control theory to explore how the study's participants presented their post-diagnosis behaviours in ways that maintained their most significant pre-diagnosis identities as 'adults', a label they gave to the core identity of being a person who belongs in the social world. Considering the processes through which older people with HIV navigated challenges to their identities in light of the intersectional influences of HIV and age-related stigma and illness, provides insight into how older people might experience HIV, as well as informing theoretical understandings of identity formation and maintenance in light of chronic and/or stigmatising illness more broadly.