Engaging children in research on sensitive issues: a literature review

It is now widely accepted that children should be actively involved in any research project that seeks to understand and respond appropriately to children's unique perspectives and experiences. The challenge that lies ahead for those researchers committed to hearing children's voices, is how to do this in a way that is both effective and ethical..

Me, myself and I: identity and meaning in the lives of vulnerable young people

Questions relating to identity and meaning are fundamental questions of life. As such, they have been the subject of study by scholars across a diverse range of disciplines, including psychology, theology, sociology and philosophy, throughout history. Despite this diversity, scholars agree that identity and meaning are inter-related issues which are central to the lives of human beings.It is widely accepted within the literature that adolescence is a critical period for the development of identity and meaning, and that these concepts may become even more pertinent to young people when they are confronted with persistent challenges or periods of uncertainty. However, our knowledge of how vulnerable young people perceive and experience ‘identity and meaning’ in their lives remains less clear.This research study, funded by the Institute for Catholic Identity and Mission, Australian Catholic University (ACU ), and conducted by the Institute of Child Protection Studies (ICPS) aimed to further our understanding of this area by exploring the following questions: What is the role and potency of identity and meaning in the lives of vulnerable young people? What are the implications of this for the way that we support vulnerable young people? The study adopted a participatory and qualitative approach and was conducted throughout 2012. Twenty four young people participated in in-depth one-on-one interviews about their lives

"Nowhere to go" : Investigating homelessness experiences of 12-15 year-olds in the Australian Capital Territory

[Executive Summary] Youth homelessness has been recognised as being a significant issue in Australia. Despite this, there has been little attention given to understanding how young people, especially those under 16 years of age, experience and navigate unaccompanied homelessness. A recent report on unaccompanied homeless people aged 10-17 in Tasmania highlights that, in addition to experiencing complex adversity, young people in this age group may be particularly vulnerable to policy and service provision gaps (Robinson, 2017). With an aim to better understand the issue of youth homelessness for 12-15 year olds in the Australian Capital Territory (ACT), the ACT Government’s Community Services Directorate (CSD) commissioned the Institute of Child Protection Studies (the Institute) to conduct a qualitative study. The study interviewed ten 16-19 year olds who were asked to reflect on their experience of homelessness when aged 12-15 years. The study aimed to answer the following research questions: 1. What were the factors that contributed to young people aged 12-15 years becoming homeless in Canberra, ACT? 2. What were the lived experiences of these homeless young people? 3. What were the informal and formal support and service experiences of these young people? 4. What were the needs of these young people? 5. What would help prevent young people (aged 12-15yrs) from becoming homeless? 6. How might we best provide support to young people who experience homelessness when aged between 12-15 years in Canberra? 7. Who or what helped these young people transition out of homelessness? The findings of this study highlight some common precursors and pathways into homelessness. Almost all participants in this study experienced significant adversity throughout their childhoods, often living in family homes characterised by violence, abuse and/or neglect. Half had been removed by child protection authorities into the out-of-home care system – but the young people felt this had not led to safe, stable or secure housing. As such, the majority of young people we interviewed felt like they had never had a home – a place of safety, security and happiness. Family conflict, with parents or carers, was a significant issue for the young people in this study. Alongside conflict at home, the young people we spoke to were facing a range of other challenges including: declining mental health, problems at school and feeling that no-one really understood the significance of the problems they were experiencing, or could do anything to help. With these challenges compounding, and with limited resources and minimal supports to turn to, young people felt they were left with little choice but to leave their unsafe or uncaring homes and enter into unaccompanied homelessness. Once homeless, young people felt scared and alone and had nowhere to go that could offer safe or secure housing. Young people largely relied on family or friends for short term offers of housing and other basic needs such as money and food. For over half of the participants, spending nights on the street became inevitable. Young people were connected to many formal services. However, none of these were able to meet the full range of their practical and emotional needs. Beyond access to housing or income support, which was particularly difficult for young people aged under 16yrs, young people required support with their physical and mental health and support to engage in meaningful activities (such as education or employment). Young people felt that more effective practical and emotional support could be provided if formal supporters listen carefully, take young people’s concerns seriously and use their power to advocate for young people’s needs. Effective advocacy to help young people navigate complex service systems and successfully access income and housing was particularly critical. The desire and determination for a better life had led most of the young people to leave their family homes and enter into homelessness. This determination had sustained and motivated young people whilst they experienced the many challenges associated with being homeless. At the time of their interview, some young people had achieved stable housing and were making significant caring contributions to others and/or were meaningfully engaged in work or study. Half of the young people who participated in this study, however, remained homeless. As the young people noted, there is much work to be done to help prevent and better respond to youth homelessness in the ACT. The young people who participated in this study hope their views and experiences can assist in this important work

Reading, writing and responsibility :young carers and education

The aims of this research were to: Identify the major issues and concerns of young carers in the education system, including the barriers to them achieving satisfactory outcomes in education and receiving appropriate supports and services (including external referrals); Identify the information needs of teachers and other school staff in appropriately supporting young carers within the school environment; Identify strategies to meet the information needs of teachers and the support needs of young carers within educational settings

More a marathon than a hurdle: towards children’s informed consent in a study on safety

Informed consent is critical in research with children. Although much has been written about the need to see consent as an ongoing process, less has considered how to do it in practice. This article reflects on the authors’ experiences of conducting a piece of research focusing on children’s experiences of safety from abuse within institutional contexts. It draws on feedback provided by participants and the guidance of three Children’s Reference Groups. The importance of presenting information in accessible and appropriate ways, of providing opportunities for participants to negotiate their participation and for in-the-moment challenges be dealt with collaboratively and reflexively are stressed. To illustrate our approach, we provide a number of consent tools and describe how they were utilised

The "Lactation After Infant Death (AID) Framework": A Guide for Online Health Information Provision About Lactation After Stillbirth and Infant Death

Most parents who give birth to a stillborn infant, or who give birth then endure the death of their young infant, will encounter the onset of lactation (McGuinness et al., 2014). For breastfeeding parents who experience the death of their older infant, many will have established lactation or frozen stores of expressed human milk ([EHM] McGuinness et al., 2014). Despite this, lactation and EHM are rarely discussed with bereaved parents in healthcare settings (Britz & Henry, 2013; Carroll, Lenne, McEgan et al., 2014; Redshaw et al., 2014). As a result, many bereaved parents who have recently given birth are unprepared when they begin to lactate, and few are aware of the range of suppression, expression, or donation options that may be available to them (Carroll & Lenne, 2019; McGuinness et al., 2014; Welborn, 2012b). The lack of anticipatory guidance regarding lactation after infant death can be a significant source of distress for parents, exacerbating the emotional pain of their child’s death (Carroll & Lenne, 2019; McGuinness et al., 2014; Welborn, 2012b). This lack may also inadvertently compound the invisibility and ambiguity of parenthood experienced by many bereaved parents (Cacciatore et al., 2008; Layne, 2003; Oreg, 2019). Furthermore, parents bereaved as a result of giving birth to a stillborn infant or enduring their infant’s death are likely to experience breast engorgement, pain, and milk leakage (McGuinness et al., 2014) and, in the absence of reliable information, they may follow lactation management methods that prove ineffective or lead to mastitis or abscess. To prevent adverse outcomes, bereaved parents require anticipatory guidance or lactation support from qualified health professionals.This research is funded by an Australian Research Council Discovery Project (DP180100517)

Adding 6 months of androgen deprivation therapy to postoperative radiotherapy for prostate cancer: a comparison of short-course versus no androgen deprivation therapy in the RADICALS-HD randomised controlled trial

Background Previous evidence indicates that adjuvant, short-course androgen deprivation therapy (ADT) improves metastasis-free survival when given with primary radiotherapy for intermediate-risk and high-risk localised prostate cancer. However, the value of ADT with postoperative radiotherapy after radical prostatectomy is unclear. Methods RADICALS-HD was an international randomised controlled trial to test the efficacy of ADT used in combination with postoperative radiotherapy for prostate cancer. Key eligibility criteria were indication for radiotherapy after radical prostatectomy for prostate cancer, prostate-specific antigen less than 5 ng/mL, absence of metastatic disease, and written consent. Participants were randomly assigned (1:1) to radiotherapy alone (no ADT) or radiotherapy with 6 months of ADT (short-course ADT), using monthly subcutaneous gonadotropin-releasing hormone analogue injections, daily oral bicalutamide monotherapy 150 mg, or monthly subcutaneous degarelix. Randomisation was done centrally through minimisation with a random element, stratified by Gleason score, positive margins, radiotherapy timing, planned radiotherapy schedule, and planned type of ADT, in a computerised system. The allocated treatment was not masked. The primary outcome measure was metastasis-free survival, defined as distant metastasis arising from prostate cancer or death from any cause. Standard survival analysis methods were used, accounting for randomisation stratification factors. The trial had 80% power with two-sided α of 5% to detect an absolute increase in 10-year metastasis-free survival from 80% to 86% (hazard ratio [HR] 0·67). Analyses followed the intention-to-treat principle. The trial is registered with the ISRCTN registry, ISRCTN40814031, and ClinicalTrials.gov, NCT00541047. Findings Between Nov 22, 2007, and June 29, 2015, 1480 patients (median age 66 years [IQR 61–69]) were randomly assigned to receive no ADT (n=737) or short-course ADT (n=743) in addition to postoperative radiotherapy at 121 centres in Canada, Denmark, Ireland, and the UK. With a median follow-up of 9·0 years (IQR 7·1–10·1), metastasis-free survival events were reported for 268 participants (142 in the no ADT group and 126 in the short-course ADT group; HR 0·886 [95% CI 0·688–1·140], p=0·35). 10-year metastasis-free survival was 79·2% (95% CI 75·4–82·5) in the no ADT group and 80·4% (76·6–83·6) in the short-course ADT group. Toxicity of grade 3 or higher was reported for 121 (17%) of 737 participants in the no ADT group and 100 (14%) of 743 in the short-course ADT group (p=0·15), with no treatment-related deaths. Interpretation Metastatic disease is uncommon following postoperative bed radiotherapy after radical prostatectomy. Adding 6 months of ADT to this radiotherapy did not improve metastasis-free survival compared with no ADT. These findings do not support the use of short-course ADT with postoperative radiotherapy in this patient population

Duration of androgen deprivation therapy with postoperative radiotherapy for prostate cancer: a comparison of long-course versus short-course androgen deprivation therapy in the RADICALS-HD randomised trial

Background Previous evidence supports androgen deprivation therapy (ADT) with primary radiotherapy as initial treatment for intermediate-risk and high-risk localised prostate cancer. However, the use and optimal duration of ADT with postoperative radiotherapy after radical prostatectomy remains uncertain. Methods RADICALS-HD was a randomised controlled trial of ADT duration within the RADICALS protocol. Here, we report on the comparison of short-course versus long-course ADT. Key eligibility criteria were indication for radiotherapy after previous radical prostatectomy for prostate cancer, prostate-specific antigen less than 5 ng/mL, absence of metastatic disease, and written consent. Participants were randomly assigned (1:1) to add 6 months of ADT (short-course ADT) or 24 months of ADT (long-course ADT) to radiotherapy, using subcutaneous gonadotrophin-releasing hormone analogue (monthly in the short-course ADT group and 3-monthly in the long-course ADT group), daily oral bicalutamide monotherapy 150 mg, or monthly subcutaneous degarelix. Randomisation was done centrally through minimisation with a random element, stratified by Gleason score, positive margins, radiotherapy timing, planned radiotherapy schedule, and planned type of ADT, in a computerised system. The allocated treatment was not masked. The primary outcome measure was metastasis-free survival, defined as metastasis arising from prostate cancer or death from any cause. The comparison had more than 80% power with two-sided α of 5% to detect an absolute increase in 10-year metastasis-free survival from 75% to 81% (hazard ratio [HR] 0·72). Standard time-to-event analyses were used. Analyses followed intention-to-treat principle. The trial is registered with the ISRCTN registry, ISRCTN40814031, and ClinicalTrials.gov , NCT00541047 . Findings Between Jan 30, 2008, and July 7, 2015, 1523 patients (median age 65 years, IQR 60–69) were randomly assigned to receive short-course ADT (n=761) or long-course ADT (n=762) in addition to postoperative radiotherapy at 138 centres in Canada, Denmark, Ireland, and the UK. With a median follow-up of 8·9 years (7·0–10·0), 313 metastasis-free survival events were reported overall (174 in the short-course ADT group and 139 in the long-course ADT group; HR 0·773 [95% CI 0·612–0·975]; p=0·029). 10-year metastasis-free survival was 71·9% (95% CI 67·6–75·7) in the short-course ADT group and 78·1% (74·2–81·5) in the long-course ADT group. Toxicity of grade 3 or higher was reported for 105 (14%) of 753 participants in the short-course ADT group and 142 (19%) of 757 participants in the long-course ADT group (p=0·025), with no treatment-related deaths. Interpretation Compared with adding 6 months of ADT, adding 24 months of ADT improved metastasis-free survival in people receiving postoperative radiotherapy. For individuals who can accept the additional duration of adverse effects, long-course ADT should be offered with postoperative radiotherapy. Funding Cancer Research UK, UK Research and Innovation (formerly Medical Research Council), and Canadian Cancer Society

Effect of angiotensin-converting enzyme inhibitor and angiotensin receptor blocker initiation on organ support-free days in patients hospitalized with COVID-19

IMPORTANCE Overactivation of the renin-angiotensin system (RAS) may contribute to poor clinical outcomes in patients with COVID-19. Objective To determine whether angiotensin-converting enzyme (ACE) inhibitor or angiotensin receptor blocker (ARB) initiation improves outcomes in patients hospitalized for COVID-19. DESIGN, SETTING, AND PARTICIPANTS In an ongoing, adaptive platform randomized clinical trial, 721 critically ill and 58 non–critically ill hospitalized adults were randomized to receive an RAS inhibitor or control between March 16, 2021, and February 25, 2022, at 69 sites in 7 countries (final follow-up on June 1, 2022). INTERVENTIONS Patients were randomized to receive open-label initiation of an ACE inhibitor (n = 257), ARB (n = 248), ARB in combination with DMX-200 (a chemokine receptor-2 inhibitor; n = 10), or no RAS inhibitor (control; n = 264) for up to 10 days. MAIN OUTCOMES AND MEASURES The primary outcome was organ support–free days, a composite of hospital survival and days alive without cardiovascular or respiratory organ support through 21 days. The primary analysis was a bayesian cumulative logistic model. Odds ratios (ORs) greater than 1 represent improved outcomes. RESULTS On February 25, 2022, enrollment was discontinued due to safety concerns. Among 679 critically ill patients with available primary outcome data, the median age was 56 years and 239 participants (35.2%) were women. Median (IQR) organ support–free days among critically ill patients was 10 (–1 to 16) in the ACE inhibitor group (n = 231), 8 (–1 to 17) in the ARB group (n = 217), and 12 (0 to 17) in the control group (n = 231) (median adjusted odds ratios of 0.77 [95% bayesian credible interval, 0.58-1.06] for improvement for ACE inhibitor and 0.76 [95% credible interval, 0.56-1.05] for ARB compared with control). The posterior probabilities that ACE inhibitors and ARBs worsened organ support–free days compared with control were 94.9% and 95.4%, respectively. Hospital survival occurred in 166 of 231 critically ill participants (71.9%) in the ACE inhibitor group, 152 of 217 (70.0%) in the ARB group, and 182 of 231 (78.8%) in the control group (posterior probabilities that ACE inhibitor and ARB worsened hospital survival compared with control were 95.3% and 98.1%, respectively). CONCLUSIONS AND RELEVANCE In this trial, among critically ill adults with COVID-19, initiation of an ACE inhibitor or ARB did not improve, and likely worsened, clinical outcomes. TRIAL REGISTRATION ClinicalTrials.gov Identifier: NCT0273570

“I just keep my tears all inside”: Experiences of loss from children whose families face complex challenges and change

Loss – the experience of having lost something, as well as the subjective experience of missing out on something desired or expected – is a common experience in children’s lives. Many Australian children will experience the loss of a parent through divorce, separation, or death. The consequences of such losses can be severe and long lasting, affecting children’s health and wellbeing throughout their lives. Children from families facing complex challenges and change – such as family violence, abuse, neglect, mental illness, disability, substance abuse, homelessness, poverty, and social isolation – appear to be particularly at risk. These children commonly experience multiple losses of significant relationships and possessions and are at an increased risk of negative outcomes as a result of these losses. Despite the significant impact of loss in these children’s lives, understandings of childhood loss remain limited and contested. In addition, loss is afforded little attention in the Australian child and family service system. Current understandings primarily draw on adult perspectives of children’s responses to parental death, and we are yet to fully understand how children perceive and experience loss. This thesis aims to fill this gap by drawing on theory and techniques from childhood studies to explore how children, from families facing complex challenges and change, perceive and experience loss. A participatory qualitative approach was adopted to better understand children’s experiences. A children’s reference group provided advice and guidance throughout the study and 22 children, aged 6-12, participated in in-depth interviews. All children were recruited from the child and family service system in Canberra, Australia. Data was analysed using Interpretative Phenomenological Analysis (IPA). This method ensured the findings remained grounded in, and reflective of, children’s perspectives and experiences. Many common themes emerged across the diverse range of losses discussed by children. The children understood loss to be an inevitable part of life, often characterised by negative feelings associated with missing, or missing out on, valued family (including pets), friends and fun. The absence of these important people or things invoked a great depth and breadth of emotions, which were ever present and sometimes overwhelming for children. Sadness was evident in all the children’s experiences of loss, and many spoke of feeling left out and lonely. Children’s interactions with others were also inextricably linked to their experiences of loss. Silence, isolation, powerlessness, and an overriding complexity often governed children’s interactions with others and caused, complicated and compounded their loss experiences. Children used many strategies to cope with their losses, including: fun, play and laughter; focusing on the positives; and, remembering and maintaining connections with lost people. Children also identified the need for adults to: just listen; include them and give them a say; provide information; and offer comfort, care, and support for them and their families. In exploring children’s own understandings and experiences of loss, this study extends and challenges dominant understandings of childhood grief and builds knowledge of the supports required for children to cope and thrive in the wake of loss. This thesis makes an essential contribution to the development of explicit, appropriate, and sensitive practice within child and family welfare that can better respond to the diverse losses experienced by children. Further, this thesis provides a platform to strengthen the links between the currently distinct fields of childhood studies, grief and loss, and trauma