Sarah Drew

Adolescents with a chronic condition: challenges living, challenges treating

In this review, we aim to focus attention on the interaction between adolescents with chronic conditions and the health systems that support them. At least 12% of adolescents live with a chronic condition. Some conditions are characterised by increasing incidence (eg, diabetes) or improving survival rates (eg, cystic fibrosis), while others are concerning because of differentially poorer outcomes in adolescents in comparison to both children and adults (eg cancer). Growing evidence suggests that young people with chronic conditions are doubly disadvantaged--engaging in risky behaviours to at least similar if not higher rates as healthy peers, while having the potential for greater adverse health outcomes from these behaviours. In addition to efforts at improving survival, in order to improve their life chances, we need to better understand how the social and emotional outcomes of young people with a chronic disease can be improved, and better support young peoples emerging capacity for self-management.

Questions of process in participant-generated visual methodologies

There is an increasing literature on visual methodologies in which images are generated by participants as part of the research, as distinct from the analysis of existing images or images taken by the researcher. Although there are growing numbers of publications that present frameworks for analysing images and their meaning, this is an area requiring further deliberation and consolidation. Our contribution is to give serious attention to the processes of image production in participant-generated visual methodologies. We examine methodological and ethical considerations that arise before, during and after image production. Our work is in health research and we focus specifically on two methods: first, a combination of photovoice and photo-elicitation, in particular with young people; and second, drawings as research method. Based on examples using these two methods, we pose questions of process for image production and submit this for interrogation for reasons of methodological, analytical and ethical rigour.

Visual Storytelling: A Beneficial But Challenging Method for Health Research With Young People:

Visual storytelling is a new research approach drawing on established methods of photovoice and photo elicitation. It appears well suited to research with young people. We explored the feasibility of this approach, reflecting on benefits and challenges encountered while using it during a study of chronic disease self-management in adolescents. During in-depth interviews, 68 participants were questioned about the value of visual storytelling. Thematic analysis was applied. Visual storytelling was valued for (a) being a draw card during recruitment and increasing positive feelings about the research; (b) being fun; (c) promoting self-understanding; and (d) promoting expression, communication, and focus during interviews. Deciding what to photograph was difficult. More time and effort was required by researchers than for a standard qualitative interview study. The technique facilitated rich interviews, drawing into focus details of young peoples’ lives that otherwise might not have been discussed.

From photographs to findings: visual meaning-making and interpretive engagement in the analysis of participant-generated images

Although the use of visual research is gaining increased acceptance, there remains a lack of attention directed to how to rigorously analyse visual images. A framework of ‘interpretive engagement’ is proposed to describe analytic processes for meaning-making of participant-generated visual images. The ‘interpretive engagement’ framework comprises three stages of meaning-making; these are meaning-making through participant engagement (Stage 1), through researcher-driven engagement (Stage 2), and through re-contextualising (Stage 3). These three stages on their own are limited, but in combination provide rich and comprehensive visual analysis. The ‘interpretive engagement’ framework involves five key elements, namely, the researcher, the participant, the image and the context of its production and the audience/s. Each plays a significant role, contributing to the overall analysis. To illustrate the framework, a research example using participant-generated photographs from young people with chronic illness is used. This enables the visual analytic work we advocate to be evident and tangible for the reader, illustrating how interpretive engagement can support the development of substantive findings. Although multifaceted, we argue this analytic framework is predominantly researcher-driven with an emphasis on close inspection and engaging with the details of each image to determine overarching elements of the images as a collection. It involves systematically and deliberately interpreting the material followed by articulation of an analytic story which accommodates participant intentions, researcher interpretations, theoretical underpinnings and emerging knowledge claims. Implementation of this interpretive framework offers the potential for rich and thorough visual analysis and interpretations.

Collecting Data or Creating Meaning

Plagued by doubt and methodological unease, two researchers from a large Australian study resolve their quandary by revisiting methodological literature related to narrative inquiry, visual approaches and contemporary interviewing to find that the application of poststructuralist theory to methodology provides a useful way of addressing their concerns. Before embarking on extensive writing about the project, they trouble issues of data authenticity, analytic integrity and the problem of voice. The main value of this deliberation is its applicability to the wider discourse about contemporary qualitative inquiry that other researchers facing analytical dilemmas may also find helpful.

`Having cancer changed my life, and changed my life forever': survival, illness legacy and service provision following cancer in childhood

Objectives: To explore how having cancer in childhood influences social and personal wellbeing in young adulthood. Methods: Questionnaires (55) eliciting lengthy written responses and in-depth interviews (32) were used with male and female survivors of cancer in childhood (aged between 18 and 28 years). Analysis drew on a combination of grounded-theory techniques and narrative analysis. Results: Three key areas are outlined relating to the characterization of survivorship by participants. These include highlighting survival as not necessarily a simple end to a cancer story, issues relating to post-cancer bodily self-concept and its gendering, and, efforts at managing uncertainties through medical interactions and information gathering. Discussion: Participant stories in this study illustrate that even in long-term survival, cancer is present as a web of ongoing influences from the original disease and treatment, as well as the social and personal aftershocks that can occur well after malignant cells have been controlled. Findings highlight the necessity for complex redevelopment of healthcare services and social support provisions for this growing population.

Ethnography Versus Case Study ‐ Positioning Research and Researchers

In this paper we narrate a story of working on a large project funded by an Australian Research Council Linkage grant the ‘Keeping Connected: Young People, Identity and Schooling’ project. The purpose of the study is to consider the social connection and schooling of young people who have experienced long‐term chronic illness. While the research involves both quantitative and qualitative elements, the qualitative component is the largest and involves the most researcher time and diversity. At an early stage of the project, three of the researchers working on the qualitative team consider why the study was framed as a series of case studies rather than as ethnography. The second issue considered in this paper is the different approaches to data collection, data analysis and truth claims we might take.

Self-Reconstruction and Biographical Revisioning: Survival Following Cancer in Childhood or Adolescence

Narratives of long-term survival reveal a social process involving complex negotiation of identity issues, future planning and future health concerns which enables survivors to combine both fear and hope in order to develop ideas about an imagined future. Young men and women provided personal accounts, and central to their stories are efforts at biographical revisioning and self-reconstruction, which illustrate that long-term survival throws into question conventional temporal securities and predictable trajectories of self-development. Here, I present my notion of the ‘consciousness of survival’ and outline features of a further concept of ‘successful survival’. These terms relate to an ontological process in which the survivor can use illness, survival, living in a remission society and late effects of treatment as a medium for the creation of new relationships to self and others, and to learn about the world we create and inhabit. Gender and cultural background affect enactment of this process.

Harnessing Complexity: Taking Advantage of Context and Relationships in Dissemination of School-Based Interventions:

Schools and school systems are increasingly asked to use evidence-based strategies to promote the health and well-being of students. The dissemination of school-based health promotion research, however, offers particular challenges to conventional approaches to dissemination. Schools and education systems are multifaceted organizations that sit within constantly shifting broader contexts. This article argues that health promotion dissemination needs to be rethought for school communities as complex systems and that this requires understanding and harnessing the dynamic ecology of the sociopolitical context. In developing this argument, the authors draw on their experience of the dissemination process of a multilevel school-based intervention in a complex educational context. Building on this experience, they argue for the need to move beyond conventional dissemination strategies to a focus on active partnerships between developers and users of school-based intervention research and offer a conceptual tool for planning dissemination.

Parenting a child with cancer: Perceptions of adolescents and parents of adolescents and younger children following completion of childhood cancer treatment

Abstract Objective: Research examining the impact of childhood cancer on parenting is limited. This qualitative study explored perceptions from adolescents and parents of the impact of childhood cancer on parenting 2–5 years post-end of treatment. Methods: Fifty-seven semi-structured interviews were conducted with: (a) 14 parents of preadolescent children (the ‘parents of children’ group); and (b) 21 adolescents and 22 parents of adolescents (the ‘adolescents and their parents’ group; N = 43). Inductive thematic analysis was used to identify and interpret themes. Results: Six main themes emerged: (1) Parenting strategies: relaxing discipline, bribing and spoiling children; (2) Regressive parenting; (3) Structured parenting: keeping up a ‘normal’ routine; (4) Intimacy, closeness and emotional support; (5) Differential parenting; and (6) Parental protectiveness. Some themes were group specific, whilst other themes emerged for both the ‘parents of children’ and ‘adolescents and their parents’ groups. Some reports of parenting were associated with initial stages of cancer whereas other aspects of parenting attitudes and behaviours appeared to exist after the demands of diagnosis and treatment. This suggests that there is some overlap in the parenting strategies used during ‘active’ stages of the disease and survivorship. Conclusion: Our results highlight the importance of understanding parenting processes that can operate throughout the disease trajectory for families experiencing paediatric cancer. Parenting is an ongoing process and as such, parenting intervention efforts should not be limited to the active treatment phase of a child’s diagnosis.