I actually felt like I was a researcher myself.' On involving children in the analysis of qualitative paediatric research in the Netherlands
OBJECTIVES: To evaluate the feasibility of a new approach to paediatric research whereby we involved children in analysing qualitative data, and to reflect on the involvement process. SETTING: This was a single-centre, qualitative study in the Netherlands. It consisted of research meetings with individual children at home (Phase I) or group meetings at school (Phase II). In Phase I, we identified themes from a video interview during five one-on-one meetings between a child co-researcher and the adult researcher. In Phase II, during two group meetings, we explored the themes in detail using fragments from 16 interviews. PARTICIPANTS: We involved 14 school children (aged 10 to 14 years) as co-researchers to analyse children's interviews about their experience while participating in medical research. Notes were taken, and children provided feedback. A thematic analysis was performed using a framework approach. RESULTS: All co-researchers identified themes. The time needed to complete the task varied, as did the extent to which the meetings needed to be structured to improve concentration. The children rated time investment as adequate and they considered acting as co-researcher interesting and fun, adding that they had learnt new skills and gained new knowledge. The experience also led them to reflect on health matters in their own lives. The adult researchers considered the process relatively time intensive, but the project did result in a more critical assessment of their own work. CONCLUSION: The new, two-phase approach of involving children to help analyse qualitative data is a feasible research method. The novelty lies in involving children to help identify themes from original interview data, thereby limiting preselection of data by adults, before exploring these themes in detail. Videos make it easier for children to understand the data and to empathise with the interviewees, and limits time investment.
Luchtenberg ML; Maeckelberghe ELM; Verhagen AE
BMJ Open
2020
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1136/bmjopen-2019-034433" target="_blank" rel="noreferrer noopener">10.1136/bmjopen-2019-034433</a>
What constitutes meaningful engagement for patients and families as partners on research teams?
Objective There is growing emphasis on health care organizations to ensure that lay people are meaningfully engaged as partners on research teams. Our aim was to explore the perspectives of patients, family members and informal caregivers who have been involved on health care research teams in Canada and elicit their recommendations for meaningful engagement. Methods We conducted a qualitative study guided by thematic analysis of transcripts of focus groups and interviews of 19 experienced patient research partners in Canada. Results We identified four main themes: research environment, expectations, support and value, which highlight participants' combined perspectives on important factors to ensure their engagement in research is meaningful. Conclusions Our findings add to the evolving evidence base on the perspectives of lay people involved in health care research and their recommendations for research leaders on meaningful engagement. Our study suggests that research leaders should provide a welcoming research environment, outline appropriate expectations for patient research partners on research teams, support patient research partners' engagement in projects and recognize the value patient research partners bring to health research.
Black A; Strain K; Wallsworth C; Charlton SG; Chang W; McNamee K; Hamilton C
Journal of Health Services Research & Policy
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1177/1355819618762960" target="_blank" rel="noreferrer noopener">10.1177/1355819618762960</a>
Children's perspectives on the benefits and burdens of research participation
BACKGROUND: Participation in research is associated with benefits and burdens for individual research participants. Children living with a chronic illness are considered particularly vulnerable as they are already burdened with symptoms of their illness. In particular contexts, such as learning health care systems (LHS), where research and clinical care are integrated, children with chronic illnesses may be asked to participate in research related to their illness. A growing body of literature has focused on children's perspectives as research subjects; however, a relatively understudied aspect concerns children's experiences of research in clinics where they are also patients. METHODS: We interviewed 25 Canadian children and adolescents living with inflammatory bowel disease (IBD) about their experiences of research participation. RESULTS: Our participants described aspects of the research process and particular experiences as benefits and others as burdens. Benefits included helping others, receiving incentives, receiving the results of previous studies, and participating in fun activities. Burdens included the time required for particular types of research, physical and psychological discomfort, and feelings of obligation. CONCLUSIONS: Our study describes the experiences of children participating in research at a site that integrates research and clinical care. Our participants described experiences that often go unreported (such as feelings of obligation); we mention these as important considerations to be mindful of when interacting with children as (potential) research participants in an LHS and when thinking about research ethics protocols or the assent/consent process.
Barned C; Dobson J; Stintzi A; Mack D; O'Doherty KC
AJOB Empirical Bioethics
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1080/23294515.2018.1430709" target="_blank" rel="noreferrer noopener">10.1080/23294515.2018.1430709</a>
Use of Facebook in the maternal grief process: An exploratory qualitative study
Exploratory Research; Grief; Human; Qualitative Studies; Research Subjects; Social Media; Support; Women; grief; Semi-Structured Interview; human; Thematic Analysis; Maternal Attitudes; Social Networks; Utilization; Psychosocial
This study seeks to explore the potential implications of Facebook use in the process of maternal grief. The participants were 11 women who had lost their children due to accidents or prolonged illness. Semistructured interviews were conducted and subjected to thematic analysis. The participants stated that they used Facebook to receive support, to identify with other mothers, to remember the child who died, to access the child's information, to honor him/her, and to express their feelings. The use of Facebook can play a very important role in the initial phase of grieving due to the functions of this social network.
Perluxo D; Francisco R
Death Studies
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1080/07481187.2017.1334011" target="_blank" rel="noreferrer noopener">10.1080/07481187.2017.1334011</a>
Ethical considerations in end-of-life care and research
Humans; Mental Competency; Reproducibility of Results; Research; Ethics; quality of life; Palliative Care/ethics; Psychological; Stress; Multi-site Ethics; Decision Making/ethics; Empirical Research; Human Experimentation/ethics; Research Subjects; Terminal Care/ethics; Beneficence
The goal of good palliative care is to relieve suffering and to improve quality of life. However, it is clear that access to palliative care is inconsistent. At least in part, these deficiencies exist because of a lack of solid evidence on which to base clinical decisions. Therefore, there is an urgent need for research that can define the standard of care and can increase access to quality care. This paper discusses six ethical aspects of end-of-life research that investigators and clinicians should consider in designing and conducting palliative care research. These include: (1) whether a study is research or quality improvement; (2) the study's potential benefits to future patients; (3) the study's potential benefits to subjects; (4) the study's risks to subjects; (5) subjects' decision-making capacity; and (6) the voluntariness of subjects' choices to participate in research.
2005
Casarett D
Journal Of Palliative Medicine
2005
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1089/jpm.2005.8.s-148" target="_blank" rel="noreferrer">10.1089/jpm.2005.8.s-148</a>
When are research risks reasonable in relation to anticipated benefits?
Humans; Risk Factors; Research; Emergency Medical Services; Ethics; Internationality; Non-U.S. Gov't; Research Support; Clinical Trials; Placebos; Research Subjects; Therapeutic Human Experimentation/ethics
2004
Weijer C; Miller PB
Nature Medicine
2004
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1038/nm0604-570" target="_blank" rel="noreferrer">10.1038/nm0604-570</a>