ORCID Profile
0000-0002-3539-3727
Current Organisations
Trinity College Dublin
,
Queensland University of Technology
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Publisher: Wiley
Date: 20-04-2023
DOI: 10.1002/PON.6136
Abstract: From diagnosis and beyond, a paediatric brain tumour and its treatment impact the child and their family in a myriad of ways. While it is considered best practice to offer ongoing psychosocial support for all family members, there is little scholarly investigation of both families' experiences and the practical implications of offering such care. We aimed to explore families' experiences of paediatric brain tumour and their associated psychosocial health service needs. Families receiving care at the Queensland Children's Hospital in Brisbane, Australia, for a child (0–18 years) who had been diagnosed with a brain tumour between 2019 and 2022 were invited to be interviewed about their experiences. Using qualitative description, we analysed these interviews to identify families' unmet psychosocial health service needs and their suggestions for improvement. Twenty‐three clinically and socially erse families were represented. While parents/carers expressed gratitude for the care their child had received, most also described unmet needs for the broader family. We identified three primary needs to be addressed: (1) parents want accessible psychological/emotional support for themselves (2) parents/carers want additional guidance to navigate the hospital setting to reduce uncertainty and loss of control and (3) parents want support to minimise treatment‐associated trauma for their child. Our findings evidence the need for improved family‐centred psychosocial care within paediatric brain tumour care in Queensland, Australia. We propose a counselling and care coordination intervention to support parents/carers to care for themselves, their child, and their family through an extremely challenging experience.
Publisher: Wiley
Date: 25-08-2023
DOI: 10.1111/BIRT.12762
Abstract: Woman‐centered maternity service delivery is endorsed by Australian federal health policy. Despite this, little evaluation of maternity care is conducted through the lens of women. We examined the responses of women birthing in Australia to the international Babies Born Better 2018 (Version 2) open‐response survey. An online international survey was distributed primarily by means of social media for women who had given birth in the last 5 years. In addition to closed‐ended questions to describe the s le, a series of open‐ended questions recorded women's experiences and satisfaction with their maternity care and place of birth. Of 1249 women who reported birthing their most recent baby in Australia and speaking English, 84% responded to at least one open‐ended evaluation question. We thematically analyzed the data to identify three related themes of safety, choice, and respect for women. Women's experiences of these were closely tied to their model of care those birthing at home with a private midwife more so reported positive experiences than those discussing obstetric care or, to a lesser extent, midwifery‐led care in a hospital. There was a strong preference and need for (1) access to affordable care with a known practitioner from early pregnancy to postpartum, and (2) in idualized care with the removal of restrictive hospital policies not aligned with woman‐centered practice. This is the first Australian national study of women's maternity experiences and evaluations. Consistent with previous state‐based research, women birthing in Australia continue to report maternity “care” that is physically and emotionally harmful. They also stated a need to address the psychosocial aspects of becoming a mother, in addition to the biological ones. Women and other birthing people must be at the center of defining quality maternity health service delivery, and services must be accountable for preventing and addressing harm, as defined by all birthing people.
Publisher: Wiley
Date: 02-2017
DOI: 10.1111/AJO.12571
Abstract: Endometriosis is a complex, chronic condition with known psychological and social implications for women. Little is known about clinicians' perceptions of the psychosocial aspects of endometriosis and associated care. To describe clinicians' perceptions of women's experiences of living with endometriosis and of the provision of psychosocial care for endometriosis. A qualitative approach was taken using semi-structured interviews with eight gynaecologists and four general practitioners who provide care to women with endometriosis in Victoria, conducted by telephone and in person from June to December 2014. Clinicians' perceptions of women's experiences of endometriosis were consistent with those reported by women, particularly when discussing potential infertility. However, less comprehensive descriptions of the effects of endometriosis on women's work and social life and intimate relationships were observed. Some clinicians asserted that endometriosis is caused by poor mental health. General practitioners positioned themselves as best placed to provide psychosocial care to women with endometriosis gynaecologists suggested various potential providers but rarely themselves. Most clinicians assessed themselves as not being adequately trained to understand and provide care for the psychosocial aspects of endometriosis half of the gynaecologists did not believe it was necessary for them to do so. The findings of this research demonstrate clinicians' need for further support in the provision of psychosocial care for women with endometriosis, potentially through expanded clinical guidelines and professional development opportunities.
Publisher: Informa UK Limited
Date: 20-03-2015
DOI: 10.1080/03630242.2015.1022690
Abstract: Information in the popular media tends to be biased toward promoting the benefits of medicalized birth for low-risk pregnancies. We aimed to assess the effect of communicating the benefits of non-medicalized birth in magazine articles on women's birth intentions and to identify the mechanisms by which social communication messages affected women's intentions for birth. A convenience s le of 180 nulliparous Australian women aged 18-35 years were randomly exposed to a magazine article endorsing non-medicalized birth (using either celebrity or non-celebrity endorsement) or organic eating (control) throughout June-July 2011. Magazine articles that endorsed non-medicalized birth targeted perceived risk of birth, expectations for labor and birth, and attitudes toward birth. These variables and intention for birth were assessed by self-report before and after exposure. Exposure to a magazine article that endorsed non-medicalized birth significantly reduced women's intentions for a medicalized birth, regardless of whether the endorsement was by celebrities or non-celebrities. Changes in perceived risk of birth mediated the effect of magazine article exposure on women's intentions for a medicalized birth. Persuasive communication that endorses non-medicalized birth could be delivered at the population level and may reduce women's intentions for a medicalized birth.
Publisher: SAGE Publications
Date: 6
Abstract: For most children and adolescents diagnosed with a brain tumor, whether malignant or not, there will be an irrevocably negative impact on their life and that of their family. In Australia, 5 year disease-free survival is 76% meaning that many young people will go on to live with the negative consequences—including neurological and cognitive deficits, reduced school performance, psychological problems, and problems with peer social relationships—of the tumor and associated treatment. Little is known about the experiences and psychosocial healthcare needs of families living with brain tumor, particularly from the perspectives of children and adolescents. We will fill this knowledge gap with a multimethods approach for flexible data collection that addresses the erse needs of children and families living with a life-threatening illness. Recruited through the largest state pediatric health service in Queensland, Australia, we will follow families from diagnosis to capture their experiences and healthcare needs as they navigate their child’s treatment and survivorship or death. Data collection methods include semi-structured interviews, virtual tours and Photovoice all family members will be invited to participate. Reflexive thematic analysis will be used to explore the lived experiences of families, and their community and health services needs and associated facilitators and barriers to receiving such care. Our analysis will consider multiple perspectives: the in idual, dynamics within each family, and patterns observed across families. This research will inform the co-design of interventions with families to address the service gaps and healthcare needs identified by participants.
Publisher: Springer Science and Business Media LLC
Date: 27-10-2017
Publisher: Wiley
Date: 21-11-2022
DOI: 10.1111/BJEP.12474
Abstract: Brain tumours are the most common and fatal of all solid tumours for children and adolescents. The effects of the tumour and treatment (chemotherapy, radiation, and/or surgery) results in significant disruptions to childhood development and large amounts of missed schooling. Among other challenges for families, this produces obstacles for children and adolescents to achieve and maintain academic performance and experience positive schooling encounters. We thus aimed to systematically identify and synthesize qualitative evidence on how families experience paediatric brain tumour from diagnosis and beyond with regards to their schooling and education to identify gaps in service delivery, research, and policy. A protocol for this review was registered with PROSPERO (ID: CRD42020177165). Searches were conducted in Medline, CINAHL, PsycInfo, Embase, and Web of Science, and yielded 22 eligible papers (representing 17 studies). Data were extracted into NVivo12 and analysed by qualitative description. We formed the following domain summaries: academic (perceived failure to keep up with peers and finding success where one could, the importance of encouragement for diagnosed children), social (the importance of friendships and the harm of bullying), and support (the defining factor in overall return‐to‐school experience, often not enough received from educational professionals and clinicians). Our review highlights the need for more comprehensive, in idualized, and integrated support for diagnosed children to return to educational institutions, and for the need to address their social experiences, particularly with regards to bullying, potentially through a school‐wide social and emotional learning approach. Funding support, evidence‐based guidelines, staff skill development, and clear communication structures across families, health care facilities, schools, and educational departments are essential to achieving this.
Publisher: Oxford University Press (OUP)
Date: 10-03-2017
Abstract: The increasingly common practice in high-income countries to delay childbearing to the fourth and fifth decades of life increases the risk of involuntary childlessness or having fewer children than desired. Older age also increases the risk of age-related infertility, the need for ART to conceive, and obstetric and neonatal complications. Existing research relating to childbearing focusses almost exclusively on women, and in public discourse declining fertility rates are often assumed to be the result of women delaying childbearing to pursue other life goals such as a career and travel. However, evidence suggests that the lack of a partner or a partner willing to commit to parenthood is the main reason for later childbearing. To better understand men's contributions to childbearing decisions and outcomes, the literature pertaining to men's fertility-related knowledge, attitudes and behaviours was reviewed. The electronic databases of Medline, Embase and PsycINFO were searched to identify investigations of men's knowledge, attitudes and behaviours relating to fertility, infertility, reproductive health or childbearing using relevant fertility keyword search terms. Studies were included if they had investigated factors associated with men's fertility-related knowledge, attitudes and behaviours, had been conducted in a high-income country and were published in an English language peer-reviewed journal between January 2005 and August 2016. The search yielded 1349 citations. Of these, 47 papers representing 43 unique studies were included in the review. Where response rate was reported, it ranged between 13 and 94%. Studies varied in terms of research design inclusion and exclusion criteria recruitment strategies adequacy of s le size recruitment and retention rates and data collection tools. However, findings were consistent and indicate that men almost universally value parenthood, want and expect to become fathers, and aspire to have at least two children. Yet most men have inadequate knowledge about the limitations of female and male fertility and overestimate the chance of spontaneous and assisted conception. Perceptions of ideal circumstances in which to have children included being in a stable and loving relationship, having completed studies, secured a permanent job and a dependable income, having achieved personal maturity, and having a partner who desires children and is 'suitable' as a potential co-parent. Although all studies were conducted in high-income countries, between-country social and cultural differences may have influenced the findings relating to attitudes. Men aspire to parenthood as much as women do but have limited knowledge about the factors that influence fertility. The gap between ideal biological and ideal social age for having children appears to be widening, narrowing the time frame in which parenthood can be achieved. This may lead to unfulfilled parenthood aspirations. The findings can inform government policies and public education strategies aimed to support childbearing during the most fertile years, reduce the personal and societal cost of infertility and ART use, and allow people to fulfil their parenthood goals.
Publisher: MDPI AG
Date: 14-10-2020
Abstract: Resistance to chemotherapy often results from dysfunctional apoptosis, however multiple proteins with overlapping functions regulate this pathway. We sought to determine whether an extensively validated, deterministic apoptosis systems model, ‘DR_MOMP’, could be used as a stratification tool for the apoptosis sensitiser and BCL-2 antagonist, ABT-199 in patient-derived xenograft (PDX) models of colorectal cancer (CRC). Through quantitative profiling of BCL-2 family proteins, we identified two PDX models which were predicted by DR_MOMP to be sufficiently sensitive to 5-fluorouracil (5-FU)-based chemotherapy (CRC0344), or less responsive to chemotherapy but sensitised by ABT-199 (CRC0076). Treatment with ABT-199 significantly improved responses of CRC0076 PDXs to 5-FU-based chemotherapy, but showed no sensitisation in CRC0344 PDXs, as predicted from systems modelling. 18F-Fluorodeoxyglucose positron emission tomography/computed tomography (18F-FDG-PET/CT) scans were performed to investigate possible early biomarkers of response. In CRC0076, a significant post-treatment decrease in mean standard uptake value was indeed evident only in the combination treatment group. Radiomic CT feature analysis of pre-treatment images in CRC0076 and CRC0344 PDXs identified features which could phenotypically discriminate between models, but were not predictive of treatment responses. Collectively our data indicate that systems modelling may identify metastatic (m)CRC patients benefitting from ABT-199, and that 18F-FDG-PET could independently support such predictions.
Publisher: Informa UK Limited
Date: 24-07-2020
Publisher: SAGE Publications
Date: 30-01-2020
Abstract: Endometriosis is currently poorly understood by the medical sciences contemporary healthcare has been evidenced as failing to meet the erse needs of the women who live with the condition. This study examined women’s experiences of navigating knowledge and power within medical encounters for endometriosis. In-depth interviews were conducted with 26 women who have been diagnosed with endometriosis about their experiences of the condition and associated healthcare. Women valued both their own knowledge and their doctor’s clinical expertise as to which they privileged was situational, but it was essential the woman dictated which it would be. Women were wary of the social status and power of doctors to reduce their wellbeing through medical labels they did not identify with or by inhibiting their access to care. They identified the need for doctors to listen to and believe them as being essential to the provision of healthcare that meets women’s needs and addresses the complexities of endometriosis. Our findings suggest that medical education needs to equip doctors with the skills to acknowledge and incorporate women’s knowledge of their bodies within the medical encounter, and to understand how their practice affects women’s social and economic participation.
Publisher: BMJ
Date: 02-09-2014
DOI: 10.1136/JFPRHC-2013-100853
Abstract: Endometriosis is experienced by approximately 10% of women worldwide it is associated with significant burden on the woman, her family, and society. The aim of this systematic review was to synthesise the available qualitative literature to increase our understanding of the effects of endometriosis on women's lives. Seven social science and medical databases (PubMed, Medline, CINAHL, Web of Science, ScienceDirect, PsycInfo and Embase) and Google Scholar were searched for peer-reviewed papers published in English of research using qualitative methods. Eighteen papers reporting 11 studies met the inclusion criteria. Participant numbers ranged from 15 to 61 women, all recruited from support groups and specialised clinics. Studies were conducted in high-income, Anglophone countries. The review identified four prominent themes: Life, Symptoms, Medical Experience, and Self. Women's reported experiences demonstrated opportunities for enhancing current clinical practice, including improved education about endometriosis for health professionals, the need to take a comprehensive approach to pain treatment, and initiating appropriate discussion of the impact on sex life. Significant evidence gaps were identified: there was inadequate investigation of women's experiences of endometriosis-associated infertility and of the impact of reduced social participation on perceived support and emotional well-being, and limited or no inclusion of the experiences of adolescent and post-menopausal women, women from low socioeconomic backgrounds, women who do not identify as Caucasian, and non-heterosexual women.
Publisher: Wiley
Date: 14-06-2021
DOI: 10.1002/PON.5745
Abstract: Brain tumors are the most common and fatal of all solid tumors for children and adolescents those who survive live with long‐term physical and emotional consequences, as do their families. We aimed to synthesize relevant qualitative evidence on families’ experiences and psychosocial service needs across the lifespan to identify gaps in care delivery and research. Searches were conducted in Medline, CINAHL, PsycInfo, Embase, and Web of Science. Identified papers were assessed with the Joanna Briggs Institute Critical Appraisal Tool. Data were extracted into NVivo12 and analyzed by qualitative description and, where appropriate, thematic analysis. The search yielded 628 papers, of which 40 (33 studies) were eligible (6%). Although the methodological quality of the papers was low, we identified concerns that were consistently reported over time and from different perspectives. In idual family members had varying psychosocial needs to be addressed within healthcare, schooling, and public policy. These include for survivor’s mental health (particularly for body image), and to the disproportionate biopsychosocial burden faced by mother‐caregivers. Addressing the biological aspects of brain tumor cannot be our only focus. We have an obligation to provide services that meet the needs of families across diagnosis, treatment, survivorship, palliative care, and bereavement.
Publisher: SAGE Publications
Date: 12-12-2019
Abstract: Endometriosis, a common disease characterised as a “gynaecological disorder” in the medical literature, has attracted the attention of feminist scholars as a metaphorical meeting point for gender, knowledge and power. Based on interviews conducted with general practitioners and gynaecologists, we examined the language clinicians use to construct Medicine and women with endometriosis. We sought to identify whether these constructions endorsed or challenged historical discourses, and any implications for women with endometriosis. Clinicians endorsed Medicine as the authoritative knowledge on women and their bodies, and constructed Medicine as being about providing answers on, and doing things to, the body. Women with endometriosis were constructed as reproductive bodies with hysterical tendencies. The historical hysteria discourse was most often endorsed when discussing “difficult” women, referring to those for whom treatment was not helpful or who held a perception of their disease alternative to their clinician. The findings of our study are consistent with previous social analyses of medical literature on endometriosis and with women’s reported experiences, suggesting these discourses to be prevalent in contemporary healthcare for endometriosis. Medical education needs to address the historical androcentric bias of medical knowledge and equip clinicians with the skills to address women’s erse needs.
No related grants have been discovered for Kate Young.