Publications by authors named "Jo Taylor"
Objective: The objective of this study was to explore the experiences of distressed people calling helplines regarding offer and uptake of financial services after cancer diagnosis.
Methods: Cancer patients and caregivers reported whether they had discussed then used financial services and perceptions surrounding service uptake. Associations between being offered services and demographic, clinical and financial characteristics were explored.
Article Synopsis
- Patient and Public Involvement (PPI) is essential in healthcare research, especially in paediatric palliative care, but requires careful ethical and practical planning.
- A two-stage evaluation of a paediatric palliative care research center's PPI activities revealed key themes regarding clarity, balanced relationships, and mutual respect, along with highlighting the importance of funding.
- The findings emphasize that successful PPI needs well-defined roles and resources, fostering trust between researchers and parents, and led to a 'route map' for enhancing PPI effectiveness in future research.
Background: Incarcerated mothers are a marginalised group who experience substantial health and social disadvantage and routinely face disruption of family relationships, including loss of custody of their children. To support the parenting role, mothers and children's units (M&Cs) operate in 97 jurisdictions internationally with approximately 19 000 children reported to be residing with their mothers in custody-based settings.
Aim: This rapid review aims to describe the existing evidence regarding the models of service delivery for, and key components of, custodial M&Cs.
Article Synopsis
- The study aimed to create and validate a Patient Reported Experience Measure (PREM) for patients and carers involved in experimental cancer medicine trials (ECM), referred to as PREM-ECM.
- Using a mixed methods approach, researchers gathered input through interviews and focus groups, ultimately developing questionnaires that assess experiences both before and during trial participation.
- The final results led to three distinct PREMs: a 14-item 'prior' questionnaire for initial trial experiences, a 15-item 'on-trial' questionnaire for ongoing participation, and a 13-item measure for carers, all demonstrating good validity and reliability for practical use.
Article Synopsis
- - The study reviews the outcomes of social transitioning for children and adolescents experiencing gender dysphoria, highlighting that it's increasingly common for these youths to transition before professional assessment.
- - Eleven studies were analyzed, mostly of low quality, focusing on mental health and gender identity outcomes, showing generally no significant differences in mental health for children who socially transitioned, while adolescent results were mixed.
- - The authors emphasize a lack of robust research, particularly longitudinal studies, making it challenging to determine the effects of social transition on mental health and gender-related outcomes for children and adolescents.
Article Synopsis
- Clinical guidelines for hormone use in adolescents with gender dysphoria are based on limited evidence, highlighting a need for more comprehensive research on risks and benefits.
- A systematic review identified 53 studies (including cohort, cross-sectional, and pre-post designs) focusing on hormonal treatment outcomes, with only one cohort study rated as high-quality.
- Moderate-quality evidence suggests potential improvements in psychological well-being during treatment, but overall, the lack of robust studies limits definitive conclusions about various health outcomes.
Article Synopsis
- - This systematic review explores the care pathways of children and adolescents under 18 who are referred to specialist gender services, highlighting the need for more knowledge in this area.
- - A total of 23 studies from nine countries were analyzed, revealing that significant percentages of those assessed received treatments like puberty suppression (36%), hormonal therapy (51%), and surgery (16%), but the full treatment pathway and psychological care information were often lacking.
- - The authors call for more prospective studies with long-term follow-ups to better understand these care pathways and the accompanying psychological support needed for this population experiencing gender dysphoria.
Article Synopsis
- Over the past 10-15 years, there has been a notable rise in children and adolescents seeking gender services, particularly among birth-registered females, often accompanied by mental health and neurodevelopmental issues, prompting some countries to limit medical treatment options due to uncertain evidence.* -
- An e-survey conducted from September 2022 to April 2023 examined the structures and practices of gender services in eight high-income EU-15+ countries to guide service development in the UK.* -
- Findings showed that while all services had multidisciplinary teams and followed international guidelines, there were significant variations in referral criteria, care pathways, eligibility for medical interventions, and the availability of psychosocial support, highlighting a need for improved service practices
Article Synopsis
- A growing number of children and adolescents dealing with gender dysphoria are being referred to specialized services, prompting the need for clear clinical guidelines.
- The study aimed to assess the quality and development of existing guidelines for managing gender dysphoria in youth aged 0-18 by systematically reviewing various publications from 1998 to 2022.
- Findings revealed that many guidelines are inconsistent in quality and evidence-based support, often lacking clear connections between research and recommendations, with limited involvement from children, adolescents, and parents in the consultation process.
Article Synopsis
- Increasing referrals of children and adolescents with gender dysphoria to specialist services highlight the need for clear clinical guidelines.
- A systematic review of 23 guidelines (from 1998 to 2022) reveals a general agreement on a care pathway that includes psychosocial support, hormone treatment for adolescents, and surgical options for adults, but lacks clarity on assessment processes.
- There is significant variation in recommendations for psychological and medical interventions, particularly concerning prepubertal children, non-binary identities, and connections between specialist and general healthcare services.
Article Synopsis
- The text discusses a systematic review that investigates the outcomes of puberty suppression for adolescents with gender dysphoria/incongruence, highlighting a lack of robust evidence related to risks and benefits.
- The review included various study types, with mixed quality results, showing that while puberty suppression appeared effective, concerns arose regarding height growth and bone density during treatment.
- Overall, the findings suggest further high-quality research is needed to understand the impact of puberty suppression on mental health, body satisfaction, and cognitive development in these adolescents.
Article Synopsis
- The systematic review analyzes the increasing number of children and adolescents under 18 being referred to specialist gender services, highlighting a significant uptick in referrals, especially among birth-registered females.
- The study included data from 143 studies across 17 countries, revealing that many referred individuals have begun to present as their preferred gender, but there is a lack of consistent reporting on mental health and neurodevelopmental conditions.
- The authors emphasize the need for standardized data collection at referral to better understand and address the complex needs of these young individuals in gender services.
Article Synopsis
- National and international guidelines emphasize that psychosocial support is vital for children and adolescents with gender dysphoria, but specific interventions aren't defined.
- A systematic review identified ten studies on the outcomes of psychosocial support for youth experiencing gender dysphoria, revealing that many studies were of low quality and mostly showed either benefits or no impact on mental health.
- The study highlights a need for better-defined interventions and core outcomes to improve the quality of research and evidence on the effectiveness of psychosocial support in this area.
Objective: To explore the cost-effectiveness of a web-based support tool for parents of children with Juvenile idiopathic arthritis.
Methods: A multi-centred randomized controlled trial was conducted in paediatric rheumatology centres in England. The WebParC intervention consisted of online information about JIA and its treatment and a toolkit using cognitive-behavioural therapy principles to support parents manage their child's JIA.
Background: Special considerations are warranted for incarcerated mothers and their children, as both experience substantial health and social disadvantage. Children residing in custodial settings are at risk of not having access to the equivalence of education, healthcare and socialisation commensurate to that of children living in the community. This systematic review describes the existing evidence regarding underpinning theories, accessibility, and the effectiveness of custody-based Mothers and children's units (M&Cs) globally.
View Article and Find Full Text PDFBackground: People with severe mental illness (SMI), such as schizophrenia, have higher rates of type 2 diabetes and worse outcomes, compared to those without SMI and it is not known whether diabetes self-management interventions are effective for people who have both conditions. Research in this area has been impeded by a lack of consensus on which outcomes to prioritise in people with co-existing SMI and diabetes.
Aims: To develop a core outcome set (COS) for use in effectiveness trials of diabetes self-management interventions in adults with both type 2 diabetes and SMI.
Article Synopsis
- The study evaluated the risks and benefits of home-blended foods versus formula feeds in children with gastrostomy tubes, focusing on their effects on gastrointestinal symptoms and nutritional intake.
- Conducted across 32 sites in England, the cohort study involved data collection from parents and clinicians at 0, 12, and 18 months, tracking 180 children aged 6 months to 18 years.
- Results indicated that children on home-blended diets experienced fewer GI symptoms and achieved better calorie and fiber intake, while costs varied between the groups, suggesting similar safety and nutrition profiles for both feeding methods.
Article Synopsis
- This study aimed to identify work-related resources and demands affecting children's hospice staff to find ways to prevent burnout and improve employee well-being.
- They used two surveys to gather data from 583 staff members and tested these through structural equation modeling based on the Job Demands-Resource (JD-R) theory.
- Results showed that high demands lead to burnout, while having adequate resources contributes positively to work engagement, confirming elements of the JD-R model.
Background: There is a workforce shortage in the children's hospice sector, but there has been little research on the specific challenges of working in this setting and on how these challenges might be alleviated. To identify appropriate interventions to improve staff wellbeing, the drivers of wellbeing in children's hospices need to be known and measured. This paper reports on the development of two measures, one for work-related rewards and one for work-related stressors, for use in children's hospice care teams.
View Article and Find Full Text PDFLittle is known about the decision-making processes around seeking more supportive care for dementia. Persons with dementia are often left out of decision-making regarding seeking more supportive care as their dementia progresses. This paper provides a description of findings from the Decision-making in Alzheimer's Research project (DMAR) investigating the process of decision-making about transitions to more supportive care.
View Article and Find Full Text PDFBackground And Aims: Despite intravenous (IV) vedolizumab being established for treatment of inflammatory bowel disease (IBD), the novel subcutaneous (SC) route of administration may provide numerous incentives to switch. However, large-scale real-world data regarding the long-term safety and effectiveness of this strategy are lacking.
Methods: IBD patients on IV vedolizumab across 11 UK sites agreed to transition to SC injections or otherwise continued IV treatment.
Introduction: There is a lack of standard nomenclature and a limited understanding of programmes and services delivered to people in prisons as they transition into the community to support their integration and reduce reoffending related risk factors. The aim of this paper is to outline the protocol for a modified Delphi study designed to develop expert consensus on the nomenclature and best-practice principles of programmes and services for people transitioning from prison into the community.
Methods And Analysis: An online, two-phase modified Delphi process will be conducted to develop an expert consensus on nomenclature and the best-practice principles for these programmes.
Background: Trials of hospital deprescribing interventions have demonstrated limited changes in practitioner behaviour. Our previous research characterised four barriers and one enabler to geriatricians and pharmacists deprescribing in hospital that require addressing by a behaviour change intervention. Six behaviour change techniques (BCTs) have also been selected by the target audience using the hospital Deprescribing Implementation Framework (hDIF).
View Article and Find Full Text PDFBackground: Worldwide, around 21 million children would benefit from palliative care and over 7 million babies and children die each year. Whilst provision of paediatric palliative care is advancing, there major gaps between what should be done, and what is being done, in clinical practice. In 2017, the National Institute for Health and Care Excellence (NICE) introduced a quality standard, to standardise and improve children's palliative care in England.
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