Article
Environmental Sciences
Barbara Groot, Tineke Abma
Summary: This study aims to explore the value and ethical issues of boundary objects addressing health inequalities. A qualitative evaluation of three different boundary objects created with marginalized populations reveals that successful boundary objects can evoke emotions and create an impulse for change. However, boundary objects may also cross personal boundaries, provoking feelings of discomfort and ignorance.
INTERNATIONAL JOURNAL OF ENVIRONMENTAL RESEARCH AND PUBLIC HEALTH
(2021)
Article
Family Studies
Melanie Doucet, Harrison Pratt, Martha Dzhenganin, Jordan Read
Summary: Child welfare practices and policies often neglect the perspectives and realities of youth in care. It is important to empower youth aging out of care to define their own needs, goals, and success based on their unique context. Participatory Action Research and Photovoice approaches can engage youth as co-researchers and allow them to represent their own lived experiences, empowering them and fostering connections to the community.
CHILD ABUSE & NEGLECT
(2022)
Review
Multidisciplinary Sciences
Janet Njelesani, Vongai Mlambo, Tsedenia Denekew, Jean Hunleth
Summary: The participation of children with disabilities in qualitative health research is limited, with studies often being conducted on them rather than with or by them. This exclusion of children with disabilities from the design and implementation of health research highlights the need for health researchers to prioritize their inclusion and collaborate with experts in disability and childhood studies. A range of inclusive and non-ableist methods should be employed to enable meaningful participation and diverse expression.
Article
Public, Environmental & Occupational Health
Roisin Mooney, Clair Dempsey, Brian J. Brown, Frank Keating, Doreen Joseph, Kamaldeep Bhui
Summary: This paper presents a model of research practice that focuses on addressing epistemic injustice and promotes the importance of lived experience and structural disadvantages. The authors share their processes and the experiences of participants in a study called Co-pact, aiming to transform research practice. Rather than discussing specific research findings, the paper aims to provide expertise on addressing epistemic injustice and offers practical examples of participatory research processes, core values, and procedures implemented.
FRONTIERS IN PUBLIC HEALTH
(2023)
Review
Public, Environmental & Occupational Health
Qian-Wen Xie, Yiran Zhang, Xiaolu Dai, Wenya Yang, Cecilia L. W. Chan
Summary: This study systematically reviewed qualitative research using drawing-based approaches on the experiences of children living with physical health problems and summarised how the approaches were used. Qualitative data generated from the included studies were synthesised using the thematic synthesis approach. The study highlighted the importance of drawing-based approaches in health research with children for fostering inclusive participation and engagement of young generations.
HEALTH & SOCIAL CARE IN THE COMMUNITY
(2022)
Article
Hospitality, Leisure, Sport & Tourism
Jessica Nachman, Lyndsay Hayhurst, Mitchell Mcsweeney, Rachel Wang
Summary: The colonising tendencies of Western research have led to deliberate misrepresentation of Indigenous and racialised bodies, resulting in exploitation and violence towards these communities. This paper demonstrates the utility of a decolonial feminist PAR approach to arts-based methods for sport research. The results show the importance of co-creating knowledge within sport scholarship to illuminate diverse knowledges vulnerable to systemic oppression and erasure, challenging power relations within sport research.
QUALITATIVE RESEARCH IN SPORT EXERCISE AND HEALTH
(2023)
Article
Family Studies
Tasha L. Golden
Summary: Accumulating US studies reveal gender inequities in youth violence research. Understanding how girls and young women perceive and experience violence is crucial for improving youth health. This mixed-methods study incorporates violence surveys and arts-based methods to examine their experiences. The arts-based methods provide additional knowledge and are trauma-informed and assets-based.
FAMILY & COMMUNITY HEALTH
(2022)
Article
Social Sciences, Interdisciplinary
Christina Tatham-Fashanu
Summary: This paper describes an innovative research method that records observations of young children through visual means, specifically cartoons. The researchers used the participants' self-portraits to create cartoons that visually represented the researcher's written observations. This method was engaging, held personal significance, and opened up spaces for dialogue, enabling the researcher to uncover deeper insights.
QUALITATIVE RESEARCH
(2022)
Article
Public, Environmental & Occupational Health
Philippe Martin, Corinne Alberti, Serge Gottot, Aurelie Bourmaud, Elise de La Rochebrochard
Summary: This study aims to assess young people's proposals for a web-based intervention for sexual health promotion. The majority of participants found the idea of a web-based intervention for sexual health promotion attractive. They made 31 concrete proposals, emphasizing the need for participatory and interactive features, as well as a secure and confidential space with valid and personalized content.
Article
Food Science & Technology
Marleen C. Onwezen, Emily P. Bouwman, Hans C. M. van Trijp
Summary: There is a growing trend of incorporating participant engagement in food literature, such as citizen science and community-based participatory research. This trend will impact the scientific field of food behavior research, bringing both advantages and disadvantages. The article contributes to the literature by providing a structured overview of participatory methods and developing a framework indicating the pros and cons of participatory methods in food behavior research.
Article
Management
Seda Karakaya, Fatma Yasemin Kutlu
Summary: This study aimed to determine the health problems of LGBT individuals and their utilization of health care services from their own perspectives. The findings highlighted the need for healthcare professionals to have persistent awareness and specific knowledge of LGBT health issues to provide quality care. The results can serve as a warning for managers and policymakers to seriously plan for reforming healthcare services and integrate content about the health needs of LGBT individuals into the curriculum of medical and nursing schools.
JOURNAL OF NURSING MANAGEMENT
(2021)
Article
Social Sciences, Interdisciplinary
Louisa Smith, Lyn Phillipson
Summary: This research note highlights the exclusion of late-stage dementia patients' perspectives in research, despite efforts like Participatory Action Research. It outlines the shortcomings in engaging this group in a PAR project at a residential aged care facility, but also demonstrates how methods from design thinking, creative, and arts-based research successfully facilitated meaningful interactions with late-stage dementia patients.
INTERNATIONAL JOURNAL OF SOCIAL RESEARCH METHODOLOGY
(2021)
Review
Psychology, Educational
Deborah Chinn, Bogdan Balota
Summary: This study systematically reviewed the current state of photovoice research with people with intellectual disabilities and identified areas for further methodological consideration. The findings explored the extent to which photovoice supported the 'voice' and agency of participants, and whether it lived up to its promise as 'action' research. The study concluded that photovoice creates opportunities for self-representation and suggested further support for participants to engage in critical reflection and collaborate on tangible outcomes with researchers.
JOURNAL OF APPLIED RESEARCH IN INTELLECTUAL DISABILITIES
(2023)
Article
Health Care Sciences & Services
Sophie Beland, Mireille Lambert, Alannah Delahunty-Pike, Dana Howse, Charlotte Schwarz, Maud-Christine Chouinard, Kris Aubrey-Bassler, Fred Burge, Shelley Doucet, Alya Danish, Olivier Dumont-Samson, Mathieu Bisson, Alison Luke, Marilyn Macdonald, Andre Gaudreau, Judy Porter, Donna Rubenstein, Veronique Sabourin, Cathy Scott, Mike Warren, Linda Wilhelm, Catherine Hudon
Summary: This study aimed to describe and compare the experiences of patient partners and academic researchers in patient engagement research. The findings highlight the importance of evolving relationships, creating an environment that fosters patient engagement, striking a balance, and recognizing the impact and value of patient engagement. The experiences of patient partners and academic researchers differed based on their backgrounds, motives, and expectations, but both groups emphasized the need for structure and flexibility in patient engagement.
HEALTH EXPECTATIONS
(2022)
Article
Social Sciences, Interdisciplinary
Caitlin Nunn
Summary: This study presents five dimensions that mediate and shape a sense of belonging in participatory arts-based research with refugee-background young people. It acknowledges the transformative potential of participation, arts, and research, and contributes to a better understanding of this potential.
QUALITATIVE RESEARCH
(2022)
Article
Nursing
Lucy Bray, Ed Horowitz, Kimberley Preston, Bernie Carter
Summary: Children attending hospital for a procedure value the opportunity to have an active role and be involved in decision-making about their care. However, current evidence is lacking regarding how children would like to be supported before, during, and after a procedure. This qualitative study used improvised drama workshops to explore children's perceptions and opinions of attending hospital for a procedure. The findings highlight the importance of allowing children to express their emotions, participate in interactions, and be included in decision-making processes.
JOURNAL OF CHILD HEALTH CARE
(2023)
Article
Nursing
Marla A. Garcia de Avila, Bernie Carter, Lucy Blake, Holly Saron, Jennifer Kirton, Joanne Protheroe, Dayane C. Novaes, Rubia A. Alencar, Tatiane R. Fernandes Teixeira, Lucy Bray
Summary: This study analyzed the role of parents in sharing or limiting their child's access to information about COVID-19 in Brazil. The findings showed that some parents chose to share information with their children in an honest and open manner, while others limited their child's access to information due to concerns about the mortality rate of COVID-19.
JOURNAL OF CHILD HEALTH CARE
(2023)
Article
Pharmacology & Pharmacy
Bernie Carter
Summary: This study examines the experiences and perceptions of paediatric pharmacists during the COVID-19 pandemic, as well as the support provided by clinical psychologists. The findings suggest that the pharmacists' work was affected, but the adoption of a compassion-focused therapy model helped improve their work and relationships with colleagues.
INTERNATIONAL JOURNAL OF PHARMACY PRACTICE
(2023)
Editorial Material
Medicine, Research & Experimental
Bernie Carter, Lucy Bray, Nadia al-Najjar, Agnes Tort Piella, Catrin Tudur-Smith, Catherine Spowart, Amber Collingwood, Holly Crudgington, Janet Currier, Dyfrig A. Hughes, Eifiona Wood, Rachael Martin, Christopher Morris, Deborah Roberts, Alison Rouncefield-Swales, Heather Sutherland, Victoria Watson, Georgia Cook, Luci Wiggs, Paul Gringras, Deb Pal
Summary: This study reflects on the recruitment challenges faced in a trial examining the effectiveness of antiseizure medications and a sleep behavior intervention in children with Rolandic epilepsy. The study highlights the importance of considering parental preference, involving children in decision-making, and using alternative trial designs. Future studies should prioritize consultation and explore novel methods such as preference trials and discrete choice experiments.
Editorial Material
Nursing
Bernie Carter
JOURNAL OF CHILD HEALTH CARE
(2023)
Article
Neurosciences
Rachel Rapson, Jos M. Latour, Bernie Carter, Vasiliki Pitsouni, Jonathan F. Marsden
Summary: Children with CP have altered APAs during gait initiation, especially when stepping to medially placed targets. They have difficulty modulating APAs according to target position. APAs are related to symptom severity, movement quality, and impairment profile.
Article
Nursing
Alison Flynn, Karen Whittaker, Adam J. Donne, Lucy Bray, Bernie Carter
Summary: This study aimed to examine how parents develop personal resilience when facing the challenges of caring for a child with tracheostomy. Findings reveal the journey parents experienced, how their feelings changed and the processes involved in developing resilience over the first 12 months of their child having a tracheostomy. Different aspects of resilience such as self-awareness, grit, gratitude, internal locus of control and reframing came to the fore at different time points.
JOURNAL OF CHILD HEALTH CARE
(2023)
Article
Medicine, General & Internal
Nadia Al-Najjar, Lucy Bray, Bernie Carter, Advisory Panel Castle, Amber Collingwood, Georgia Cook, Holly Crudgington, Janet Currier, Kristina Charlotte Dietz, Will A. S. Hardy, Harriet Hiscock, Dyfrig Hughes, Christopher Morris, Deborah Roberts, Alison Rouncefield-Swales, Holly Saron, Catherine Spowart, Lucy Stibbs-Eaton, Catrin Tudur Smith, Victoria Watson, Liam Whittle, Luci Wiggs, Eifiona Wood, Paul Gringras, Deb K. Pal
Summary: This article introduces a clinical trial for sleep interventions in children with epilepsy. The trial compares the effectiveness and cost-effectiveness of standard care with a parent-led online sleep intervention that incorporates evidence-based behavioral components. The aim of the trial is to address the issue of costly and non-scalable face-to-face educational sessions.
Article
Pediatrics
Holly Saron, James Munro, Rob Young, Enitan D. D. Carrol, David Porter, Ruth Cantwell, Claire Crouch, Julia Roberts, Bernie Carter
Summary: This paper discusses the shift in work practices due to COVID-19, where remote and creative methods were utilized for consultation activities. The authors highlight their use of the 'ZOOM' teleconferencing platform to consult with children and parents, producing an animation and information sheet on outpatient parenteral antimicrobial therapy (OPAT) through collaborative efforts. The opportunities and challenges encountered during the process are identified.
Review
Radiology, Nuclear Medicine & Medical Imaging
Holly Saron, Lucy Bray, Bernie Carter, Catherine Wilkinson
Summary: This scoping review examined communication and experiences of children undergoing X-ray procedures. The study found that radiographers dominate communication during X-ray procedures, with their communication being instructional and limiting children's involvement. The review also highlighted the importance of informing children about their X-ray and the positive experiences reported by children.
Article
Education & Educational Research
Blake Peck, Lucy Bray, Annette Dickinson, Julie Blamires, Daniel Terry, Bernie Carter
Summary: This study used an arts-based qualitative approach to gain insight into the health literacy of children with long-term conditions. The findings showed that children have a pragmatic understanding of their condition and tend to share information with well-informed peers who can provide support if needed.
HEALTH EDUCATION JOURNAL
(2023)
Article
Health Care Sciences & Services
Eduardo Costa, Ceu Mateus, Bernie Carter, Holly Saron, Chin-Kien Eyton-Chong, Fulya Mehta, Steven Lane, Sarah Siner, Jason Dean, Michael Barnes, Chris McNally, Caroline Lambert, Bruce Hollingsworth, Enitan D. D. Carrol, Gerri Sefton
Summary: This study investigated the potential cost savings of implementing the DETECT surveillance system for monitoring children. The results showed a reduction in total critical care days, but the decrease in critical deterioration events (CDEs) was not statistically significant. Based on hospital reported costs, the estimated savings were £1.7 million (11%) and based on HRG average costs, the estimated savings were £1.1 million (13%). However, the results did not support the hypothesis that reducing CDEs using technology significantly reduces hospital costs.
BMC HEALTH SERVICES RESEARCH
(2023)
Article
Pediatrics
Eduardo Costa, Ceu Mateus, Bernie Carter, Sarah Siner, Dawn Jones, Leah Evans, Jenny Preston, Fulya Mehta, Caroline Lambert, Bruce Hollingsworth, Enitan D. Carrol, Gerri Sefton
Summary: This study aims to investigate and assess the economic burden faced by caregivers of hospitalized children experiencing critical deterioration in unplanned circumstances. The findings reveal that caregivers incur expenses during the hospital stay, and working caregivers also experience productivity losses as a result.
Article
Neurosciences
Rachel Rapson, Jos M. Latour, Bernie Carter, Vasiliki Pitsouni, Jonathan F. Marsden
Summary: This study assessed the reliability of stepping accuracy and anticipatory postural adjustments (APAs) in children with cerebral palsy. The study found good reliability in measuring the amplitude and velocity of medio-lateral APAs in these children, while the reliability of antero-posterior APAs was more variable. This study provides important research tools for evaluating dynamic balance.
Article
Pediatrics
Lucy Bray, Bernie Carter, Joann Kiernan, Ed Horowicz, Katie Dixon, James Ridley, Carol Robinson, Anna Simmons, Jennie Craske, Stephanie Sinha, Liza Morton, Begonya Nafria, Maria Forsner, Anna-Clara Rullander, Stefan Nilsson, Laura Darcy, Katarina Karlsson, Cath Hubbuck, Maria Brenner, Sian Spencer-Little, Kath Evans, Andrew Rowland, Carol Hilliard, Jennifer Preston, Piet L. Leroy, Damian Roland, Lisa Booth, Jean Davies, Holly Saron, Marie Edwinson Mansson, Ann Cox, Karen Ford, Steven Campbell, Julie Blamires, Annette Dickinson, Michael Neufeld, Blake Peck, Marla de Avila, Veronica Feeg, Henny Suzana Mediani, Maha Atout, Maureen D. Majamanda, Natasha North, Christine Chambers, Fanny Robichaud
Summary: This study is the first of its kind to outline international rights-based procedural care standards from multi-stakeholder perspectives. The standards provide health professionals and educators with clear evidence-based tools to support discussions and practice changes, challenging prevailing assumptions about holding or restraining children and instead focusing on the interests and rights of the child.
EUROPEAN JOURNAL OF PEDIATRICS
(2023)
