Contrasting lives,contrasting views? Understandings of health inequalities from children in differing social circumstances

Children's differing socio-economic, cultural and familial circumstances and experiences are part of the pathways implicated in health and illness in adulthood. However, in the existing, mainly survey based, work children's own voices tend to be absent and adult-defined data about health and illness accumulated. Little is known about the social and cultural processes, in children's very different childhoods, which underpin and ultimately constitute these epidemiological findings. This paper reports findings from a qualitative study examining the socio-economic and cultural contexts of children's lifestyles and the production of inequalities in health, carried out in a large Scottish city. Two rounds of semi-structured interviews, using a range of child-friendly techniques (photographs, drawings, vignettes), were carried out with 35 girls and boys aged 9-12 years living in two contrasting but contiguous areas, one relatively advantaged and one relatively disadvantaged. Thirty of their parents were also interviewed and community profiling and observational work undertaken. Children and parents described often starkly contrasting lives and opportunities, regularly involving material differences. However, children appeared to locate inequalities as much in relationships and social life as in material concerns; in this their direct experiences of relationships and unfairness were central to their making sense of inequality and its impact on health. Although children from both areas highlighted several different inequalities, including those related to material resources, they also spoke of the importance of control over their life world; of care and love particularly from parents; of friendship and acceptance by their peer group. Many children challenged straightforward causal explanations for future ill-health, privileging some explanations, such as psychological or lifestyle factors. The accounts of children from both areas displayed considerable resilience to and downplaying of the effects of both relationship and material inequalities; also showing how familial and personal challenges, such as bullying, divorce, learning difficulties, cut across structurally based differences.     

Normalization strategies of children with asthma

Despite understanding the physiologic effects of childhood asthma, less is known about how children perceive living with asthma. We undertook semistructured, in-depth interviews with 11 boys and 11 girls (all aged 11) drawn from a larger ongoing asthma study of Manitoba children born in 1995. All had asthma, as diagnosed by a pediatric allergist. We sought to further understand how children perceive asthma. Children spoke of feeling different and commonly used words such as "pain" and "hurt." We have categorized children's strategies to normalize their lives as (a) minimizing the health impact, (b) stressing normality, (c) emphasizing abilities, (d) making adaptations in daily living, and, (e) managing symptoms with medications. These findings suggest that aspects of other researchers' work regarding normalization efforts of children with various chronic diseases also apply in a chronic condition that is less obvious.     

Parents' experiences of caring for a child with a cleft lip and/or palate: a review of the literature

This review brings together for the first time the existing quantitative and qualitative research evidence about the experiences of parents caring for a child with a cleft. It summarizes salient themes on the emotional, social and service-related experiences of parents and critiques the literature to date, comparing it with wider, selected literature from the field of children's long-term conditions, including disability. The review suggests that there are similarities and differences between the literatures, in terms of research focus and approach. Similarities are found across children's conditions in the perspectives of parents on emotional, social and service-related aspects, although much of the cleft literature is focused on the early stages of children's lives. However, the quality of cleft research to date about parents' experiences has also been variable, with a narrow emphasis on cross-sectional, deficit-orientated psychological approaches focused mainly on mothers. Despite a substantial literature, little qualitative research has examined parents' perspectives in-depth, particularly about their child's treatment journey. This contrasts with the wider children's literature, which has traditionally drawn not only on psychological approaches but also on the broader perspectives of sociology, social policy, nursing and health services research, using both qualitative and quantitative methods, often in integrated ways. Such approaches have been able to highlight a greater range of experiences from both mothers and fathers, about caring for a child with a long-term condition and views about treatment. The review identifies a lack of comparable research in the cleft field to examine parents' experiences and needs at different stages of their children's lives. Above all, research is needed to investigate how both mothers and fathers might experience the long-term and complex treatment journey as children become older and to elicit their views about decision making for cleft treatments, particularly elective surgeries.     

Engaging conceptions of identity in a context of medical pluralism: explaining treatment choices for everyday illness in Niger

This article uses ethnographic research to reflect upon how the treatment of ‘everyday’ illnesses in Niger engages concepts of social identity. Inspired by Bourdieu's concept of social distinction, as well as Appadurai's edited volume on the ‘social lives’ of ‘things’, I present an analysis of how medications are understood by their users in terms of social and ideological meaning in one rural Hausa village. Decisions about medication choice were framed by three main themes: belonging to the ‘modern’ world, ‘traditional’ Hausa culture, and religious identity. This article does not argue that these notions of identity fully explain medication use, nor necessarily predict treatment choices. The purpose of this paper is to reflect on the dynamic meanings given to treatment decisions after they have been made, attributed to the medications themselves and negotiated through their circulation in a context where multiple medical systems are drawn from to manage illness. Producers and sellers of medication also engage these meaning‐centred concepts, which have theoretical and practical interest for the social sciences and public health. A virtual abstract for this paper can be viewed at: https://www.youtube.com/channel/UC_979cmCmR9rLrKuD7z0ycA     

Social Support and the Management of Uncertainty for People Living With HIV or AIDS

People with chronic and acute illnesses experience uncertainty about their prognoses, potential treatments, social relationships, and identity concerns. In a focus group study of people living with HIV or AIDS, we examined how social support may facilitate or interfere with the management of uncertainty about health, identity, and relationships. We found that support from others helps people with HIV or AIDS to manage uncertainty by (a) assisting with information seeking and avoiding, (b) providing instrumental support, (c) facilitating skill development, (d) giving acceptance or validation, (e) allowing ventilation, and (f) encouraging perspective shifts. Respondents also reported a variety of ways in which supportive others interfered with uncertainty management or in which seeking support imposed costs. Problems associated with social support and uncertainty management included a lack of coordination in uncertainty management assistance, the addition of relational uncertainty to illness uncertainty, and the burden of others' uncertainty management. Our study reveals strategies respondents used to manage costs and complications of receiving support, including developing an active or self-advocating orientation, reframing supportive interactions, withdrawing from nonproductive social situations, selectively allowing others to be support persons, and maintaining boundaries.     

Social support and the management of uncertainty for people living with HIV or AIDS

People with chronic and acute illnesses experience uncertainty about their prognoses, potential treatments, social relationships, and identity concerns. In a focus group study of people living with HIV or AIDS, we examined how social support may facilitate or interfere with the management of uncertainty about health, identity, and relationships. We found that support from others helps people with HIV or AIDS to manage uncertainty by (a) assisting with information seeking and avoiding, (b) providing instrumental support, (c) facilitating skill development, (d) giving acceptance or validation, (e) allowing ventilation, and (f) encouraging perspective shifts. Respondents also reported a variety of ways in which supportive others interfered with uncertainty management or in which seeking support imposed costs. Problems associated with social support and uncertainty management included a lack of coordination in uncertainty management assistance, the addition of relational uncertainty to illness uncertainty, and the burden of others' uncertainty management. Our study reveals strategies respondents used to manage costs and complications of receiving support, including developing an active or self-advocating orientation, reframing supportive interactions, withdrawing from nonproductive social situations, selectively allowing others to be support persons, and maintaining boundaries.     

A disorder of anger and aggression: children's perspectives on attention deficit/hyperactivity disorder in the UK

This article investigates the social and moral dimensions of Attention Deficit/Hyperactivity Disorder (ADHD) diagnosis, asking what ADHD means in UK children's everyday lives, and what children do with this diagnosis. Drawing on interviews with over 150 children, the analysis examines the influence of a UK state school-based culture of aggression on the form and intensity of diagnosed children's difficulties with behavioral self-control. Diagnosed children's mobilization of ADHD behaviors and their exploitation of the diagnosis shows how children's active moral agency can support and compromise cognitive, behavioral and social resilience. The findings support a proposal for a complex sociological model of ADHD diagnosis and demonstrate the relevance of this model for national policy initiatives related to mental health and wellbeing in children.     

Regulating sex work: subjectivity and stigma in Senegal

Abstract

Senegal provides a unique example of a sub-Saharan African country with a legal framework for the regulation of commercial sex work. While registering as a legal sex worker affords women access to valuable social and medical resources, sex work is condemned by Senegalese society. Women who engage in sex work occupy a socially marginal status and confront a variety of stigmatising discourses and practices that legitimate their marginality. This paper examines two institutions that provide social and medical services to registered sex workers in Dakar: a medical clinic and a non-governmental organisation. It highlights the discourses about sex work that women encounter within these institutions and in their everyday lives. Women’s accounts reveal a variety of strategies for managing stigma, from discretion and deception to asserting self-worth. As registered sex workers negotiate their precarious social position, their strategies both reproduce and challenge stigmatising representations of sex work. Their experiences demonstrate the contradictory outcomes of the Senegalese approach to regulating sex work.     

Visceral politics: obesity and children’s embodied experiences of food and hunger

Children have been made a priority in Australian government obesity interventions, with programmes tending to focus on promoting behaviour change in food and exercise practices. This paper reports findings from ethnographic research with a group of Australian children aged 10–14 years living in a low socio-economic suburban setting. We propose that central to these children’s experiences of food and eating is the negotiation and management of hunger. Historically, disadvantage has been embodied and inscribed on children’s bodies in very visible ways, and the coexistence of hunger and obesity is part of this continuum. Despite considerable evidence of food insecurity in our research site, issues of hunger were absent in an obesity intervention underway at the time. We examine how hunger was felt in children’s lives, how it was managed and the ways in which messages about eating less, while eating more ‘healthy foods’, were at odds with the children’s experiences of hunger. Moreover, we argue that hunger and obesity in this context were doubly stigmatised, as children were very aware of how their hunger and their bodies marked them as different and disadvantaged. Attention to both the embodied and social impacts of hunger on children and their everyday relationships is key in formulating more sensitive, contextualised public health interventions.     

Progressivity and participation: children's management of parental assistance in paediatric chronic pain encounters

This article examines how older paediatric patients (10–18 years) initiate different actions, including the solicitation of parental assistance, to accomplish the task of answering clinicians' symptom questions in three paediatric tertiary care clinics. Using the qualitative method of conversation analysis to examine children's symptom accounts in 69 video-recorded outpatient intake visits, I describe four child-initiated strategies that preclude, solicit and limit parental assistance in the interactional environment of having difficulties in providing an answer. These strategies are: children's own answer searches, children's solicitations of corroboration, children's solicitations of an answer, and children's answer completions. Supported by the clinicians' strong commitment to child-centredness, children manage to solicit parental assistance without losing the opportunity to present their own symptom accounts.     

Strategies for improving disability awareness and social inclusion of children and young people with cerebral palsy

Background Children and youth with disabilities are at a higher risk of being socially excluded or bullied while at school compared with their typically developing peers. This study explored disabled children's suggestions for improving social inclusion. Methods Fifteen children with cerebral palsy were interviewed or took part in a group discussion about social inclusion and bullying. All interviews and focus groups were audio-recorded and transcribed verbatim. Results The children and youth described several strategies to help improve social inclusion at school including: (1) disclosure of condition and creating awareness of disability; (2) awareness of bullying; (3) developing a peer support network and building self-confidence; and (4) suggestions on what teachers can do. Conclusions It is recommended that children's suggestions be considered within the classroom context to enhance the social inclusion and participation of children with disabilities.     

Growing up in disadvantage: a systematic review of the qualitative evidence

BACKGROUND AND OBJECTIVES: Childhood disadvantage has lasting negative effects on children's health and well-being. However, the impact of poverty and associated disadvantage on children's lives as children is under-researched. This paper reviews a small, but important, group of qualitative studies that prioritize children's perspectives on growing up in disadvantage, exploring the social resources that they typically draw upon. METHODS: Systematic review methods were used to locate and appraise qualitative studies that take as their focus children's subjective accounts of living in disadvantage. Data from the studies were then synthesized using meta-ethnographic methods. RESULTS: Children and young people describe aspects of family relationships, friendships and neighbourhoods that help to mitigate the impact of disadvantage on their well-being. However, their accounts demonstrate that such resources are not always and unambignously experienced as supportive and protective. DISCUSSION: This systematic review highlights the value of social resources available to children living in poor circumstances, but also points up their limitations. Poverty, by its very nature, compromises the worth of these resources.     

Children of mixed parentage in care; why such a high number?

Reasons for the relatively high number of mixed parentage children in the care system have not really been fully explored or given much consideration (Barn, R., 1999b).

Most discussions about mixed parentage children in care tend to focus primarily on the idea of the children's low self-esteem and their state of confusion and uncertainty about their racial and cultural identity (Small, J. 1986 and 1992, Banks, N. 1992, and Maxime, J. 1993). This is the second of two articles that have attempted to explore the identification of mixed parentage children and the possible underlying factors that influence the approach of social workers and social welfare professionals in their assessment and work with the children. In the first article (Okitikpi, T. 1999), it was the ways in which the identities of the children are assumed and the ideas that inform how social workers and social commentators identify the children that was of concern. In this article I shall attempt to explore the reasons for the high number of mixed parentage children in the care system. This article is somewhat speculative, as it does not claim to be the actual explanation for the phenomenon under discussion, the emphasis nevertheless, is to attempt to provide possible explanations as to why children of mixed parentage are more readily accommodated by local authorities than children from monoracial backgrounds.     

HIV and identity: the experience of AIDS support group members who unexpectedly tested HIV negative in Uganda

Living with HIV, for many of those infected, has meant adjusting to life with a stigmatised condition and, until recently, the threat of looming death. We explore the adjustment of a group of long-term former clients of The AIDS Support Organisation (TASO) in Uganda who, when tested for HIV during the rollout of antiretroviral therapy in 2004, were found to be HIV negative. In-depth semi-structured interviews with 34 former TASO clients were conducted between 2005 and 2007. Their narratives reveal a great deal about the biographical disruption they have faced, and the biographical work that they have undertaken in both the personal and the social dimensions of their lives in order to manage their new-found HIV-uninfected status. After the negative test result, as they were no longer HIV-infected, they had to leave TASO and that support was sorely missed, as was the friendship of TASO members to whom they often felt reluctant to disclose their new status. The identity 'reversal' or change was often handled privately. Compared with their transition to an HIV-positive identity, they now lacked a social dimension to their identity transformation as they managed their new identity in the face of self- and public doubt.     

Strategies for Racial Identity Development: Narratives of Black and White Women in Interracial Partner Relationships*

This exploratory qualitative study used individual interviews and a focus group to investigate how women in Black‐White interracial heterosexual partner relationships retrospectively described their racial identity development over the course of the relationships. Racial identity development, social constructionist, and feminist theories guided the grounded theory methodology. Participants described a process of restorying constraining narratives of racial identity into empowering racial identities through three types of strategies: blocking strategies, transforming strategies, and generating strategies.     

“The Things that are Inside of You are Horrible”: Children and Young Men with Duchenne Muscular Dystrophy Talk about the Impact of Living with a Long-term Condition

Duchenne muscular dystrophy (DMD) is an inherited, progressive and life-limiting neuromuscular disease that affects boys. During their lives, they experience a series of medical and surgical interventions. Research reported in this paper took place in England with 37 young men living with DMD and their families and explored their experiences of growing up, school, work, friends and family. In accordance with the social model of disability, this research was initially reluctant to dwell on the physiological aspects of living with a long-term, degenerative condition. We focused on social model concerns about the disabling barriers to the participants' participation in society, the disabling responses of professionals and barriers to achieving their aspirations. However, young people with DMD also wanted to talk about how living with the condition caused them considerable pain and discomfort. They also explained the emotional impact of medical and surgical interventions. They reported very few opportunities to discuss these matters with family members or professionals. We explore possible reasons for the absence of discussion about these issues and reflect on the consequences for both the young person and their family. We suggest that a reluctance to tackle the thorny issue of “body” and “impairment” in social science research with disabled children and young people means that important aspects of childhood disability are under-explored.     

Identity and stammering: negotiating hesitation,side‐stepping repetition,and sometimes avoiding deviation

Individuals who experience speech dysfluency are often stigmatised because their speech acts differ from the communicative norm. This article is located in and seeks to further the identity debates in exploring how individuals who are subject to the intermittent emergence of a stigmatised characteristic manage this randomised personal discrediting in their identity work. Through a series of focus groups and semi‐structured interviews participants grudgingly report their management approaches which include concealing, drafting in unwitting others, role‐playing and segregating self from their stammer. In describing how they manage their stammer they detail their use of the social space in a number of ways, including as a hiding place; a site for ‘it’ (the stammer); a gap in which to switch words; and a different area in which to perform. This study offers important insights, increasing our understanding of the often hidden negotiations of identity work and the sometime ingenious use of space in the management of a social stigma.     

Pleasing Yourself and Working for the Teacher: Children's Perceptions of School

Three hundred and eleven multi-cultural children were interviewed to explore how 4-9 year olds perceived and experienced their activities, roles, responsibilities and relationships with peers and teachers in school. The study explored children's conception of social and moral issues such as racism, sexism, violence, punishment, social justice and safety issues. The study was to assist educators and care-givers in their understanding of children's thinking in a rapidly changing world. More than 310,000 items of information were collected. This paper concentrates on children's views of schools, teachers, the curriculum, punishment and social justice.     

'I take a small amount of the real product': Elevated cholesterol and everyday medical reasoning in liminal space

The medical consequences of elevated cholesterol are widely known, as are the medical regimens to control and manage it. At the same time, elevated cholesterol is bereft of bodily signs. Being symptomless places the condition in a no man's land: people with elevated cholesterol are assessed as medically sick but their bodies signal wellness. In this article I refer to this ambiguous grey area, betwixt and between being healthy and being sick, as liminal space . The aim of this article is to show how people manage the symptomless condition of elevated cholesterol in liminal space. Particular attention is paid to everyday medical reasoning in that space. Based on interviews with people with elevated cholesterol, I show that medical regimens are 'up against' - challenged by - a variety of competing conditions in everyday life, illustrating ambiguity. Facing this dilemma between medicine and everyday life, they ongoingly need to navigate - edit, modify, adjust - medical regimens against everyday conditions. This navigating work can be seen as ritualized strategies to sort ambiguity. People with elevated cholesterol do not so much act 'against medical regimens' as they simultaneously need to take account of other matters they are up against in trying to stay healthy. Medical regimens are sometimes central, sometimes peripheral. Adapting medical regimens to the situation at hand, people continuously comply with medical regimens, producing and reproducing medical regimens in moral contexts of everyday life.     

Communicatively Exploring Uncertainty Management of Parents of Children with Type 1 Diabetes

Parents of children with type 1 diabetes (T1D) face uncertainty about the illness. This uncertainty can have negative health consequences for parents and their children. However, little is known about the types of uncertainty associated with T1D diagnosis and subsequent treatment and how this uncertainty is managed. Using uncertainty management theory (UMT) as a framework and 29 in-depth interviews with parents of children with T1D, this study found that parents experienced medical, social, and financial forms of uncertainty. Most parents viewed uncertainty negatively and sought to reduce it by seeking information, joining support groups, and turning to technology. However, some parents preferred uncertainty to the certainty of knowing their child had T1D and, at least initially, chose to maintain uncertainty about the disease by avoiding information. This study also provides practical outcomes that health-care providers can use to help parents of children with T1D reduce and manage uncertainty.