Philip Darbyshire

Multiple methods in qualitative research with children: more insight or just more?

This article explores the research implications of using multi-methods within a broad qualitative approach by drawing on the experience of conducting two childhood obesity-focused qualitative studies of Australian children’s perceptions and experiences of place, space and physical activity. Children described and depicted their physical activities and experiences: in focus group interviews, by mapping their local, social and recreational spaces and by photographing their meaningful places, spaces and activities using a Photovoice approach. The authors describe, reflect on and critique their chosen research approach, discussing the value, utility and pitfalls associated with using multiple methods with children. The article concludes that using multiple methods in researching children’s experiences is a valuable approach that does not merely duplicate data but also offers complementary insights and understandings that may be difficult to access through reliance on a single method of data collection.

A randomized comparison of liposomal versus conventional amphotericin B for the treatment of pyrexia of unknown origin in neutropenic patients

One hundred and thirty‐four adults and 204 children were randomized in two prospective, parallel comparative multicentre trials to receive either conventional amphotericin B 1 mg/kg/d (c‐AMB), liposomal amphotericin B 1 mg/kg/d (L‐AMB1) or liposomal amphotericin B 3 mg/kg/d (L‐AMB3). Patients were entered if they had a pyrexia of unknown origin (PUO) defined as temperature of 38°C or more, not responding to 96 h of systemic broad‐spectrum antibiotic treatment, and neutropenia (< 0.5 × 109/l). The safety and toxicity of liposomal amphotericin B was compared with that of conventional amphotericin B. Efficacy of treatment was assessed, with success defined as resolution of fever for 3 consecutive days (< 38°C) without the development of any new fungal infection. Clinical and laboratory parameters were collected for safety analysis. In both the paediatric and adult populations, L‐AMB treated patients had a 2–6‐fold decrease in the incidence (P  0.01) of test‐drug‐related side‐effects, compared to c‐AMB. Severe trial‐drug‐related side‐effects were seen in 1% of L‐AMB treated patients, in contrast to 12% of patients on c‐AMB (P < 0.01). Nephrotoxicity, in the patient subset not receiving concomitant nephrotoxic agents, defined as a doubling from the patients baseline serum creatinine level, was not observed in the L‐AMB1 arm whereas the incidence was 3% in patients on L‐AMB3 and 23% in those on c‐AMB (P < 0.01). Moreover, time to develop nephrotoxicity was longer in both L‐AMB arms than c‐AMB (P < 0.01). Severe hypokalaemia was observed less frequently in both L‐AMB arms (P < 0.01).

Effect of mitoxantrone on outcome of children with first relapse of acute lymphoblastic leukaemia (ALL R3): an open-label randomised trial

Summary Background Although survival of children with acute lymphoblastic leukaemia has improved greatly in the past two decades, the outcome of those who relapse has remained static. We investigated the outcome of children with acute lymphoblastic leukaemia who relapsed on present therapeutic regimens. Methods This open-label randomised trial was undertaken in 22 centres in the UK and Ireland and nine in Australia and New Zealand. Patients aged 1–18 years with first relapse of acute lymphoblastic leukaemia were stratified into high-risk, intermediate-risk, and standard-risk groups on the basis of duration of first complete remission, site of relapse, and immunophenotype. All patients were allocated to receive either idarubicin or mitoxantrone in induction by stratified concealed randomisation. Neither patients nor those giving interventions were masked. After three blocks of therapy, all high-risk group patients and those from the intermediate group with postinduction high minimal residual disease (≥10−4 cells) received an allogenic stem-cell transplant. Standard-risk and intermediate-risk patients with postinduction low minimal residual disease (<10−4 cells) continued chemotherapy. The primary outcome was progression-free survival and the method of analysis was intention-to-treat. Randomisation was stopped in December, 2007 because of differences in progression-free and overall survival between the two groups. This trial is registered, reference number ISCRTN45724312. Findings Of 239 registered patients, 216 were randomly assigned to either idarubicin (109 analysed) or mitoxantrone (103 analysed). Estimated 3-year progression-free survival was 35·9% (95% CI 25·9–45·9) in the idarubicin group versus 64·6% (54·2–73·2) in the mitoxantrone group (p=0·0004), and 3-year overall survival was 45·2% (34·5–55·3) versus 69·0% (58·5–77·3; p=0·004). Differences in progression-free survival between groups were mainly related to a decrease in disease events (progression, second relapse, disease-related deaths; HR 0·56, 0·34–0·92, p=0·007) rather than an increase in adverse treatment effects (treatment death, second malignancy; HR 0·52, 0·24–1·11, p=0·11). Interpretation As compared with idarubicin, mitoxantrone conferred a significant benefit in progression-free and overall survival in children with relapsed acute lymphobastic leukaemia, a potentially useful clinical finding that warrants further investigation. Funding Cancer Research UK, Leukaemia and Lymphoma Research, Cancer Council NSW, and Sporting Chance Cancer Foundation.

Guidelines for the diagnosis and management of acquired aplastic anaemia.

The purpose of this guideline is to provide a rational approach to the investigation and management of patients with acquired aplastic anaemia. These guidelines have been produced by both specialists in the field of aplastic anaemia and experienced district general hospital haematologists, and reviewed by members of the British Committee for Standards in Haematology (BCSH) General Haematology Task Force. Because aplastic anaemia is a rare disease, many of the statements and comments in the first part of this manuscript are based on review of the literature and expert or consensus opinion rather than on clinical studies or trials. Medline, Cinahl and Embase databases were searched for this purpose. Levels of evidence for treatment of aplastic anaemia also reflect the rarity of this condition. To ensure wide dissemination of these guidelines, they are also available on the BCSH website and will be reviewed on a three yearly basis.

The UK experience in treating relapsed childhood acute lymphoblastic leukaemia: a report on the medical research council UKALLR1 study.

We have examined the toxicity and overall outcome of the Medical Research Council UKALL R1 protocol for 256 patients with relapsed childhood acute lymphoblastic leukaemia (ALL). Second remission was achieved in over 95% of patients. Two patients died during induction and seven patients died of resistant disease. The overall actuarial event‐free survival (EFS) at 5 years for all patients experiencing a first relapse was 46% (95% CI 40–52). Duration of first remission, site of relapse, age at diagnosis and sex emerged as factors of prognostic significance. Five‐year EFS was only 7% for children relapsing in the bone marrow within 2 years of diagnosis, but was 77% for those relapsing without bone marrow involvement > 2.5 years from diagnosis. All analyses in this report are by treatment received. For those receiving chemotherapy alone, the 5‐year EFS was 48%; for autologous bone marrow transplantation (BMT), the 5‐year EFS was 47%; for unrelated donor BMT, it was 52%; and for related donor BMT, the 5‐year EFS was 45%. The groups, however, were not comparable with respect to risk factor profile, and therefore direct comparison of EFS is misleading. Adjustment for time to transplant and prognostic factors was used to reduce the effects of biases between treatment groups, but did not suggest benefit for any particular treatment. There was failure of our planned randomization scheme in this trial with only 9% of those eligible being randomized, which highlights the difficulties in running randomized trials especially in patients who have relapsed from a previous trial. The optimal treatment for relapsed ALL therefore remains uncertain. Alternative approaches are clearly needed for those with early bone marrow relapse if outcome is to improve.

The Experience of Pervasive Loss: Children and Young People Living in a Family Where Parental Gambling Is a Problem

Gambling research has contributed much to our understanding of the effects of gambling on families, yet we have only the most cursory understanding of the childs perspective on what it is like to grow up in such a family. The aim of this qualitative study was to gain a deeper understanding of the experiences of Australian children who live in families where a parent or caregiver has a serious gambling problem by exploring the perspectives and understandings of the children and young people themselves. This paper reports a central finding, the experience of ‘Pervasive Loss,’ from our interviews with 15 young people, 11 males and 4 females, aged between 7 and 18 years. Their sense of loss encompassed both physical and existential aspects of the childs life, including their parent(s), relationships, trust, security, sense of home, and material goods. The dimensions of this experience of pervasive loss are explored from the childs perspective. Children living in families where gambling is a problem experience threats to their overall well-being to the extent that parental problem gambling must now considered to be a significant child health as well as social problem.

Bone marrow transplantation for beta-thalassaemia major: the UK experience in two paediatric centres.

Summary. Stem cell transplantation (SCT) remains the only cure for thalassaemia major. Recent advances in medical treatment make it even more important that accurate information is available regarding outcome of SCT in relevant patient populations in order to guide informed decisions regarding the most appropriate treatment for individual thalassaemia patients. We report the results of 55 consecutive first related allogeneic bone marrow transplants (BMT) for children with β‐thalassaemia major performed in two UK paediatric centres over 10 years. Between February 1991 and February 2001, 55 children underwent 57 allogeneic BMT. The median age at BMT was 6·4 years and the majority of patients (73%) originated from the Indian subcontinent. Using the Pesaro risk classification, 17 patients were class 1, 27 were class 2 and 11 were class 3. Actuarial overall survival and thalassaemia‐free survival at 8 years were 94·5% (95% CI 85·1–98·1) and 81·8% (95% CI 69·7–89·8) respectively. Despite the majority of patients being in class 2 or 3, transplant‐related mortality was low (5·4%). The principal complication was graft rejection accompanied by autologous reconstitution that occurred in 13·2% of transplants. Following modification of the conditioning regimen in 1993, the rejection rate fell to 4·6% and remained low. Acute graft‐versus‐host disease (GVHD) of grade II–IV occurred in 31% and chronic GVHD in 14·5%. These data compare favourably with survival with medical treatment for thalassaemia major and suggest that allogeneic BMT remains an important treatment option for children with β‐thalassaemia major, particularly when compliance with iron chelation is poor.

We have to live in the future

Governments and health authorities are expressing concern about increasing levels of obesity, diabetes and physical inactivity in children. In response to such concerns, it is common to adapt strategies for adults to children, and to conduct adult‐focused research. This paper describes a research study commissioned by the South Australian government that sought to involve children aged younger than 12 years in defining their meanings and views about physical activity. The research is being used to plan strategies to increase children’s participation in physical activity. The qualitative study combined focus groups, drawing and mapping techniques and photographic methods with 204 children aged 4–12 years in metropolitan and rural South Australia. This paper reports results from two of the research questions: What are children’s theories of physical activity, play and sport? What do children want to tell adults? Results indicate that children were enthusiastic participants in the research and appreciated the opportunity to communicate their views. The terms ‘physical activity’ and ‘exercise’ had little meaning for children, who described them as terms adults use. ‘Play’ and ‘sport’ had powerful, contrasting meanings for children: with ‘play’ child‐centred and ‘sport’ controlled by adults. Children had mixed views on the power of sporting heroes as role models, on computers and television as the enemy of physical activity and on links between physical activity and health status. The research demonstrates that children bring to the discourse about physical activity some ideas that challenge the views adults hold about children. It is recommended that strategies to increase children’s participation in physical activity are designed using research with children.

What are our boundaries and where can we play? Perspectives from eight‐ to ten‐year‐old Australian metropolitan and rural children

This study took place in an inner metropolitan Adelaide school and a rural school on Kangaroo Island off the South Australian coast. We compare 33 eight‐ to 10‐year‐old children’s accounts of what the area is like for them. What are the rules and boundaries and who sets them? Metropolitan children were found to have tighter boundaries and required adult supervision to use facilities that rural children could use unsupervised. Rural children negotiated freedom of movement by considering broad principles about safety. Findings increase our understanding of how children perceive movement within their communities, and suggest policies and environmental changes to increase freedom of movement. Study findings raise concerns about the way the environment is designed for social planning, and the importance of children’s engagement and interaction with the natural environment.

Extending new paradigm childhood research: meeting the challenges of including younger children

This special issue of Early Child Development and Care could not be more timely. In focusing on the issues involved in researching the views and experiences of young children, we are engaging with ...