Who are the children in child health policy? How do they live and see the world, and why should we know them? A journey into the lives of children coping in a world compromised by poverty and ...inequality,The Children in Child Health challenges the invisibility of children's perspectives in health policy and argues that paying attention towhat children do is critical for understanding the practical and policy implications of these experiences. In the unique context of indigenous Māori and migrant Pacific children in postcolonial New Zealand, Julie Spray explores the intertwining issues of epidemic disease, malnutrition, stress, violence, self-harm, and death to address the problem ofhow scholars and policy-makers alike can recognize and respond to children as social actors in their health.The Children in Child Health innovatively combines perspectives from childhood studies, medical anthropology, and public health and policy together with evocative ethnography to show how a deep understanding of children's worlds can change our approach to their care.
Who are the children in child health policy? How do they live and see the world, and why should we know them? A journey into the lives of children coping in a world compromised by poverty and ...inequality, The Children in Child Health challenges the invisibility of children’s perspectives in health policy and argues that paying attention to what children do is critical for understanding the practical and policy implications of these experiences.
In the unique context of indigenous Māori and migrant Pacific children in postcolonial New Zealand, Julie Spray explores the intertwining issues of epidemic disease, malnutrition, stress, violence, self-harm, and death to address the problem of how scholars and policy-makers alike can recognize and respond to children as social actors in their health. The Children in Child Health innovatively combines perspectives from childhood studies, medical anthropology, and public health and policy together with evocative ethnography to show how a deep understanding of children’s worlds can change our approach to their care.
Children are the focus of numerous health interventions throughout the world, yet the extent of children's meaningful participation in research that informs the adaptation, implementation, and ...evaluation of health interventions is not known. We examine the type, extent, and meaningfulness of children's participation in research in qualitative health intervention research.
A scoping study was conducted of qualitative published research with children (ages 6-11 years) carried out as part of health intervention research. Following Arksey and O'Malley's scoping study methodology and aligned with the PRISMA-ScR guidelines on the reporting of scoping reviews, the authors searched, charted, collated, and summarized the data, and used descriptive and content analysis techniques. Ovid MEDLINE was searched from 1 January 2007 to 2 July 2018 using the keywords children, health intervention, participation, and qualitative research. Study selection and data extraction were carried out by two reviewers independently.
Of 14,799 articles screened, 114 met inclusion criteria and were included. The study identified trends in when children were engaged in research (e.g., post-implementation rather than pre-implementation), in topical (e.g., focus on lifestyle interventions to prevent adult disease) and geographical (e.g., high-income countries) focuses, and in qualitative methods used (e.g., focus group). While 78 studies demonstrated meaningful engagement of children according to our criteria, there were substantial reporting gaps and there was an emphasis on older age (rather than experience) as a marker of capability and expertise.
Despite evidence of children's meaningful participation, topical, geographical, and methodological gaps were identified, as was the need to strengthen researchers' skills in interpreting and representing children's perspectives and experiences. Based on these findings, the authors present a summary reflective guide to support researchers toward more meaningful child participation in intervention research.
Rheumatic fever (RF) recurrence prevention requires secondary prophylaxis for at least ten years. However, recurrences of rheumatic fever (RRF) persist disproportionately affecting Māori and Pacific ...youth. Reasons for recurrence rates are not well understood and commonly attributed to patient non‐adherence. This research explored Māori and Pacific family experiences of RRF to better understand barriers to accessing secondary prophylaxis to inform health service improvements.
Participants were Māori and Pacific patients who had RRF or unexpected rheumatic heart disease and their family; and health professionals working in RF contexts. Kaupapa Māori, Talanga and Kakala Pacific qualitative methodologies were employed. Data were thematically analysed using a general inductive approach.
Data collection included 38 interviews with patients and families (n=80), six focus group interviews and nine interviews with health providers (n=33) from seven geographic regions. Three key themes were identified where mismatches occurred between services and community needs: 1. Model of delivery; 2. Interpersonal approaches to care; and 3. Adolescent care.
Successful RRF prevention requires interventions to address structural causes of inequity, appropriate clinical guidelines and quality health services. Service‐delivery models should provide regular prophylaxis in an accessible manner through culturally‐safe, community‐based, age‐appropriate care.
Since 2014, the Rheumatic Fever Prevention Programme has targeted communities in Aotearoa, New Zealand affected by high rates of rheumatic fever (RF): namely, Māori and Pacific families. Initiated ...with the aim of reducing ethnic health disparities, the Health Promotion Agency attempted to use culturally appropriate approaches by engaging in consultative processes with Māori and Pacific communities and health leaders in developing the intervention. However, these consultations largely focused on evaluating strategies for reaching “priority” audiences with the message to get sore throats checked and on changing health-seeking behaviours. There was little regard for what the structural roots of RF in Aotearoa might suggest about equitable interventions, nor for the potentially harmful effects of the messages and their presentation.
The concept of structural violence can be a useful analytical tool to critically evaluate such interventions which attempt to address health disparities but do not meaningfully attend to equity. Drawing on three ethnographic studies with: 1) Northland Māori families (Anderson et al., 2015); 2) North Island Māori and Pacific families (Anderson et al., 2017); and 3) Māori and Pacific children at a South Auckland school (Spray, 2020), we show how recategorising RF disparities as expressions of violence reveals how, despite including cultural consultation, interventions may still inequitably distribute responsibility. In particular, by responsibilising communities affected with the highest rates of RF, the intervention creates collateral damage of stigma, internalised blame, emotional suffering and hypervigilance that reproduces structural violence. We suggest that attending to how families experience public health messaging in the context of their daily lives may guide a more critical and culturally safe health promotion that looks beyond awareness and behaviour and towards equity.
•Responsibility can be inequitably distributed through health promotion.•Even culturally-appropriate interventions can reproduce structural violence.•Consultations cannot hold communities responsible for identifying potential harms.•Consultations should include people trained in critical indigenous perspectives.
Childhood studies’ long concern with elevating children’s perspectives has focused attention on “voice” rather than researcher-participant dialogue, precluding critical attention to the normative ...adult researcher voice. This article investigates how cocreating comics with children about the COVID-19 pandemic engaged a different researcher voice and produced different representations of pandemic childhoods. Making comics with children aged 7–11, I asked: What does it mean for researchers to speak in speech? I suggest that shifting researcher voices can help researchers recognize the conventions that allow adults to colonize spoken conversation with children, denaturalizing adult voice and allowing us to tell more than one story.
Analysing emotions such as love can enable new ways of understanding human relationships and deepen reflexive ethnographic practice. Love in research with children, however, carries a unique set of ...implications due to children’s structural vulnerability, the power imbalances and abuses that manifest in many adult-child relationships, and cultural taboos on love expressed between adults and children. Yet, the ability to elicit love and affective care from adults is an essential component of children’s survival, and children actively coproduce relationships, making researchers into whom they need them to be. How, then, can we approach love in fieldwork with children? Drawing from fieldwork experiences at a New Zealand primary school with participants aged 8-12, I analyse how children recruited me into their survival systems by cultivating love and associated processes of empathy, care, and attachment. I suggest that ethical fieldwork with children means attending to how we feel and respond to love.
Children growing up during the COVID-19 pandemic have seen unprecedented restructuring of their childhoods through lockdowns, virtual schooling and other public health measures. Theories of ...biographical disruption developed from individual experiences of life-altering diagnoses predict that unforeseen events such as the pandemic will restructure individual perceptions of their future life narrative. Such theories have been developed from adult experiences, however, with scholars suggesting that normalcy may be more salient to children's experience of chronic illness. Children's experiences might be expected to vary from those of adults' due to their different structural position and younger life history which shifts children's perceptions of temporality, normalcy and disruption. Empirical evidence from young people with chronic illness, meanwhile, describes diverse experiences of continuity and disruption, while the rhythms and interruptions of childhood chronic illness remain without an adequate explanatory framework. Aotearoa New Zealand's zero-COVID approach presents a unique opportunity to understand children's perceptions of disruption and continuity. I worked with 26 children aged 7-11 living in diverse locations in Auckland, developing a comic-based method to elicit children's perspectives and co-construct narratives over virtual or in-person research visits. Juxtaposed with caregiver experiences and paediatric asthma research, I analyse children's perspectives to suggest how children differently make sense of and accommodate crisis events. I argue that moving beyond biographical disruption to address the bio-psycho-social factors producing diverse ruptures, discontinuities and interferences will more completely represent children's experiences of chronic illness and life crises.
Summary
For several decades childhood scholars have noted children's systematic exclusion from public in many risk‐averse societies, a disappearance exacerbated during the COVID‐19 pandemic. While ...many have noted the impoverishing effects for children from such exclusion, during my stay in a New Zealand Managed Isolation and Quarantine (MIQ) facility, I came to ask, what does society lose when we un‐child the public? Through a feature comic, I draw the story of how children infiltrated MIQ's age‐segregated spatial–temporal boundaries to inadvertently or deliberately deliver unique forms of care to others with whom they otherwise had no contact. If MIQ represents a microcosmic refraction of New Zealand's adult‐centric structure, then children's chalk drawings demand a radical rethinking of who and what constitutes public health care and remind us what we gain when we recognize what children do for us.
Children's perspectives rarely appear at strategic levels in public health. Policy‐makers can hold adult‐centric assumptions about children, and may be uncertain about how to interpret and apply ...children's perspectives in policy. Yet how children experience and perceive health interventions can shape the success of services. What, then, might child‐centred approaches to health policy consider? Through ethnographic work in New Zealand, I document how children engage with a school rheumatic fever prevention service, and provide a framework of three lenses through which policy‐makers can more meaningfully consider children's perspectives on health: (a) The embodied‐child; (b) the social‐child, and (c) the public‐child.
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