Research barriers in children and young people with life-limiting conditions: a survey

Peake, Jordana Natalie; Beecham, Emma; Oostendorp, Linda; Hudson, Briony; Stone, Patrick; Jones, Louise; Lakhanpaul, Monica; Bluebond-Langner, Myra

doi:10.1136/bmjspcare-2018-001521

Cited by 10 publications

(9 citation statements)

References 33 publications

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“…The perception that research ethics committees act as an obstacle to research with children at the end of life has been evident in the literature for over 15 years. [6][7][8] Despite this commonly held belief, this is the first study to empirically explore whether committees actually are a barrier to research with seriously ill children. Our findings suggest that while the metaphorical bar to gaining ethical approval is indeed high, with many obstacles to meet both before and after submission, it is not insurmountable, particularly when researchers are aware of and can address the committee's expectations and key concerns.…”

Section: Main Findingsmentioning

confidence: 99%

“…[2][3][4][5] However, there are a number of challenges to conducting research with this population: timing difficulties associated with end-oflife research; limited funding and resources for palliative care research; and clinician hesitancy towards involving these children and their families in research studies. 6,7 In addition, despite a shared goal for high-quality, ethically sound research, researchers report that research ethics committees and the associated regulatory approval processes pose an obstacle to the conduct of such research involving seriously ill children. [6][7][8] Research ethics committees, alternatively known as human research ethics committees, institutional review boards or European ethics committees (hereafter referred to as 'committees'), are a group of individuals who are responsible for reviewing research applications to ensure that internationally and locally recognised ethical standards are being met.…”

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

“…6,7 In addition, despite a shared goal for high-quality, ethically sound research, researchers report that research ethics committees and the associated regulatory approval processes pose an obstacle to the conduct of such research involving seriously ill children. [6][7][8] Research ethics committees, alternatively known as human research ethics committees, institutional review boards or European ethics committees (hereafter referred to as 'committees'), are a group of individuals who are responsible for reviewing research applications to ensure that internationally and locally recognised ethical standards are being met. 9 Similarly, it is the researchers' responsibility to ensure that they are familiar with and that they comply with these recognised ethical standards when developing a research protocol.…”

Section: Introductionmentioning

confidence: 99%

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Insights into the perception that research ethics committees are a barrier to research with seriously ill children: A study of committee minutes and correspondence with researchers studying seriously ill children

2019

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Background: Research ethics committees are commonly perceived as a ‘barrier’ to research involving seriously ill children. Researchers studying seriously ill children often feel that committees view their applications more harshly compared to applications for research with other populations. Whether or not this is the case in practice is unknown. Aim: The aim of this study was to explore committees’ concerns, expectations and decisions for research applications involving seriously ill children submitted for review in the United Kingdom. Design: Content analysis of committee meeting minutes, decision letters and researcher response letters. Setting/participants: Chief investigators for National Institute of Health Research portfolio studies involving seriously ill children were contacted for permission to review their study documents. Results: Of the 77 applications included in this study, 57 received requests for revisions at first review. Committee expectations and concerns commonly related to participant information sheets, methodology, consent, recruitment or formatting. Changes were made to 53 of these studies, all of which were subsequently approved. Conclusion: Our findings suggest that committees review applications for research involving seriously ill children with the same scrutiny as applications for research with other populations. Yet, the perception that committees act as a barrier to this type of research persists. We suggest that this perception remains due to other factors including, but not limited to, the high levels of formatting or administrative revisions requested by committees or additional study requirements needed for research involving children, such as multiple versions of consent forms or participant information sheets.

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Section: Main Findingsmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

Section: Introductionmentioning

confidence: 99%

See 2 more Smart Citations

Insights into the perception that research ethics committees are a barrier to research with seriously ill children: A study of committee minutes and correspondence with researchers studying seriously ill children

2019

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“…Accordingly, the findings from this study demonstrate the importance given by parents to the availability and support provided by nurses at the time of delivery of the therapeutic letter. Its applicability was emphasized in family‐centered nursing care, with an impact on resetting objectives and strategies related to the care provided for the child with chronic disease in hospital contexts (Almasri & Palisano, 2018; Lotz et al, 2017; Noyes et al, 2013; Peake et al, 2018). Similarly, Barrera et al, 2013, Granek et al (2013), and Charepe (2014) found that nurses working in pediatrics are key health care providers, optimally positioned to assess and promote parental hope by using realistic, positive messages, and acknowledging families' strengths and abilities.…”

Section: Discussionmentioning

confidence: 99%

Therapeutic letters: A qualitative study exploring their influence on the hope of parents of children receiving pediatric palliative care in Portugal

Fonseca

Carvalho

Querido

et al. 2021

Specialist Pediatric Nursing

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Purpose: The purpose of this qualitative descriptive study was to explore the hope experiences of parents of children diagnosed with complex chronic conditions (CCCs) who received therapeutic letters.Design and Methods: A purposive sample of 10 parents of inpatient children with CCCs was recruited from a pediatric palliative care unit in a Portuguese public hospital. A demographic form and audio-recorded semi-structured, face-to-face interviews were conducted with each participant to explore the experiences, processes, and meanings of hope, and to describe how parents of children receiving pediatric palliative care perceived the usefulness of receiving therapeutic letters.The interviews were transcribed verbatim, and using a thematic analysis, a systematic approach to data analysis was completed. Findings: Data analysis resulted in three main themes including Trust in the Future; Strengthening Hope; and Moments of Hope. Findings highlight the positive influence of therapeutic letters including supporting parental hope, facilitating personal inner-strengthening, recognition of parental skills, and promotion of self-efficacy during hospitalization. The themes and related subthemes add value to the existing literature and highlight the need for supportive palliative nursing care aimed at promoting parental hope. Practice Implications: To optimize the value of supporting parental hope, therapeutic letters can be delivered at the time of diagnosis, during times of celebration, and when learning the difficult tasks of daily childcare. Additional research can inform the development of a formal hope-based intervention to provide an evidence base from which to enhance the well-being of parental caregivers of children who have CCCs.

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Design and Administration of Patient-Centred Outcome Measures: The Perspectives of Children and Young People with Life-Limiting or Life-Threatening Conditions and Their Family Members

Coombes

Harðardóttir

Braybrook

et al. 2023

Patient

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Background Self-reported health data from children with life-limiting conditions is rarely collected. To improve acceptability and feasibility of child and family-centred outcome measures for children, they need to be designed in a way that reflects preferences, priorities and abilities. Objectives The aim was to identify preferences for patient-reported outcome measure design (recall period, response format, length, administration mode) to improve the feasibility, acceptability, comprehensibility and relevance of a child and family-centred outcome measure, among children with life-limiting conditions and their family members. Method A semi-structured qualitative interview study seeking the perspectives of children with life-limiting conditions, their siblings and parents on measure design was conducted. Participants were purposively sampled and recruited from nine UK sites. Verbatim transcripts were analysed using framework analysis. Results A total of 79 participants were recruited: 39 children aged 5–17 years (26 living with a life-limiting condition; 13 healthy siblings) and 40 parents (of children aged 0–17 years). Children found a short recall period and a visually appealing measure with ten questions or fewer most acceptable. Children with life-limiting conditions were more familiar with using rating scales such as numeric and Likert than their healthy siblings. Children emphasised the importance of completing the measure alongside interactions with a healthcare professional to enable them to talk about their responses. While parents assumed that electronic completion methods would be most feasible and acceptable, a small number of children preferred paper. Conclusions This study demonstrates that children with life-limiting conditions can engage in communicating preferences regarding the design of a patient-centred outcome measure. Where possible, children should be given the opportunity to participate in the measure development process to enhance acceptability and uptake in clinical practice. Results of this study should be considered in future research on outcome measure development in children.

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Research barriers in children and young people with life-limiting conditions: a survey

Cited by 10 publications

References 33 publications

Insights into the perception that research ethics committees are a barrier to research with seriously ill children: A study of committee minutes and correspondence with researchers studying seriously ill children

Insights into the perception that research ethics committees are a barrier to research with seriously ill children: A study of committee minutes and correspondence with researchers studying seriously ill children

Therapeutic letters: A qualitative study exploring their influence on the hope of parents of children receiving pediatric palliative care in Portugal

Design and Administration of Patient-Centred Outcome Measures: The Perspectives of Children and Young People with Life-Limiting or Life-Threatening Conditions and Their Family Members

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