1
40
15
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
2023 Special Edition 1 - Parent Perspectives List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
2023 SE1 - Parent Perspectives
URL Address
<a href="http://doi.org/10.7759/cureus.24256" target="_blank" rel="noreferrer noopener"> http://doi.org/10.7759/cureus.24256</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Depression and Quality of Life Among Caregivers of Pediatric Cancer Patients
Publisher
An entity responsible for making the resource available
Cureus
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Creator
An entity primarily responsible for making the resource
Alaqeel M; Alkhathaami F; Alshangiti A; Alanazi A; Alothri MA; Alqarni AT; Almahmoud FI; Masuadi E
Description
An account of the resource
Background This study aimed to assess the prevalence of depression, depressive symptoms, and quality of life among caregivers of pediatric cancer patients and the associated risk factors. Methodology In total, 73 participants were recruited for this cross-sectional study in King Abdullah Specialist Children Hospital. Two self-administered questionnaires were used, the Patient Health Questionnaire 9 (PHQ9) and World Health Organization Quality of Life (WHOQOL), to assess the depressive symptoms as well as the prevalence of clinical depression and quality of life, respectively. Data were analyzed using SPSS (IBM Corp., Armonk, NY, USA) to assess the level of depression and quality of life and the associated factors using Fisher's exact and Mann-Whitney tests. Results It was found that 90.4% were females and 9.6% were males, with 49.3% being between the ages of 31 and 40. Regarding the level of depression, 47.80% had mild depression. There were no significant associations between the baseline characteristics and the level of depression. Gender was significantly associated with all four domains of quality of life, age was significant in physical health and environmental domains, duration of illness was significant only in the physical health domain, while education level was found to be not significantly associated with any of the domains. Conclusions This study found that nearly half of the participants had mild levels of depression, and the four domains of the WHOQOL were significantly affected by several risk factors. We recommend further research into this topic with larger sample sizes, as well as a follow-up assessment of caregivers for a more accurate representation of caregivers' depression and quality of life. We recommend that in addition to the assessment of pediatric cancer patients, caregivers must also be assessed due to the burden associated with the task of being a caregiver.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.7759/cureus.24256" target="_blank" rel="noreferrer noopener">10.7759/cureus.24256</a>
Rights
Information about rights held in and over the resource
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).
2022
2023 SE1 - Parent Perspectives
Alanazi A
Alaqeel M
Alkhathaami F
Almahmoud FI
Alothri MA
Alqarni AT
Alshangiti A
Caregivers
Cureus
Depression
Masuadi E
Pediatric Cancer
Quality Of Life
supportive and palliative care
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
2023 Special Edition 1 - Parent Perspectives List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
2023 SE1 - Parent Perspectives
URL Address
<a href="http://doi.org/10.1177/00099228221142102" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1177/00099228221142102</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
The Experience of Parental Caregiving for Children With Medical Complexity
Publisher
An entity responsible for making the resource available
Clinical Pediatrics
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Creator
An entity primarily responsible for making the resource
Teicher J; Moore C; Esser K; Weiser N; Arje D; Cohen E; Orkin J
Description
An account of the resource
Children with medical complexity (CMC) have complex chronic conditions with significant functional impairment, contributing to high caregiving demand. This study seeks to explore impacts of parental caregiving for CMC. Fifteen caregivers of CMC followed at a tertiary care hospital participated in semi-structured interviews. Interviews were concurrently analyzed using a qualitative description framework until thematic saturation was reached. Codes were grouped by shared concepts to clarify emergent findings. Four affected domains of parental caregiver experience with associated subthemes (in parentheses) were identified: personal (identity, physical health, mental health), family (marriage, siblings, family quality of life), social (time limitations, isolating lived experience), and financial (employment, medical costs, accessibility costs). Despite substantial challenges, caregivers identified two core determinants of personal resilience: others' support (hands-on, interpersonal, informational, material) and a positive outlook (self-efficacy, self-compassion, reframing expectations). Further research is needed to understand the unique needs and strengths of caregivers for this vulnerable population.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/00099228221142102" target="_blank" rel="noreferrer noopener">10.1177/00099228221142102</a>
Rights
Information about rights held in and over the resource
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).
2022
2023 SE1 - Parent Perspectives
Arje D
Caregivers
Children With Medical Complexity
Clinical Pediatrics
Cohen E
Esser K
Moore C
Orkin J
Parenting
Qualitative Research
Quality Of Life
Teicher J
Weiser N
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
2023 Special Edition 1 - Parent Perspectives List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
2023 SE1 - Parent Perspectives
URL Address
<a href="http://doi.org/10.1353/cpr.2021.0002" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1353/cpr.2021.0002</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Lessons Learned in Implementing Youth and Parent Participatory Action Research in a School-Based Intervention
Publisher
An entity responsible for making the resource available
Progress in Community Health Partnerships
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Creator
An entity primarily responsible for making the resource
Wilhelm AK; Pergament S; Cavin A; Bates N; Hang M; Ortega LE; Bigelow M; Allen ML
Description
An account of the resource
BACKGROUND: Participatory action research (PAR) empowers youth and parent stakeholders to address school connectedness and school environment inequities to improve educational social determinants of health. OBJECTIVES: To identify lessons learned when implementing school-based youth and parent PAR (YPAR and PPAR) targeting health and academic outcomes for Indigenous students and students of color. METHODS: We collected data from five community-academic research team members who coordinated YPAR and PPAR implementation across five middle and high schools and used thematic analysis with deductive and inductive coding to identify contributors to successful PAR implementation. RESULTS: Experiential learning strengthened youth and parent researcher skills and maintained their engagement, community-building supported the PAR process, PAR required support from facilitators with diverse skill sets, and individuals in bridging roles positioned researchers for success within institutions. CONCLUSIONS: PAR holds promise for application in other settings to address institutional change and social determinants of health.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1353/cpr.2021.0002" target="_blank" rel="noreferrer noopener">10.1353/cpr.2021.0002</a>
Rights
Information about rights held in and over the resource
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).
2021
2023 SE1 - Parent Perspectives
Adolescent
Allen ML
Bates N
Bigelow M
Cavin A
Community-Based Participatory Research Health Services Research Humans Parents
Hang M
Ortega LE
Pergament S
Progress in Community Health Partnerships
Schools Students
Wilhelm AK
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
2023 Special Edition 1 - Parent Perspectives List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
2023 SE1 - Parent Perspectives
URL Address
<a href="http://doi.org/10.9778/cmajo.20210336" target="_blank" rel="noreferrer noopener"> http://doi.org/10.9778/cmajo.20210336</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Codevelopment and usability testing of Patient Engagement 101: a Patient-Oriented Research Curriculum in Child Health e-learning module for health care professionals, researchers and trainees
Publisher
An entity responsible for making the resource available
CMAJ Open
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Creator
An entity primarily responsible for making the resource
Walsh CM; Jones NL; McCreath GA; Connan V; Pires L; Abuloghod L; Buchanan F; Macarthur C
Description
An account of the resource
BACKGROUND: Patient and family engagement is thought to improve the quality and relevance of child health research. We developed and evaluated the usability of Patient Engagement 101, an e-learning module designed to strengthen the patient-oriented research readiness of health care professionals, researchers, trainees and other stakeholders. METHODS: The development of Patient Engagement 101 was co-led by a parent and a researcher and overseen by a diverse multistake-holder steering committee. The module was refined and evaluated using a mixed-methods usability testing approach with 2 iterative cycles of semistructured interviews, observations and questionnaires. We collected module feedback by way of semistructured interviews, the validated System Usability Scale, and satisfaction, knowledge and confidence questionnaires. Thematic coding of transcripts and field notes, informed by team discussions, guided the module revisions. RESULTS: Thirty end-users completed usability testing (15 per cycle). In each cycle, we modified the module with respect to its content, learner experience, learner-centred design and aesthetic design. Participants were highly satisfied, and System Usability Scale scores indicated the module had the best imaginable usability. Substantial increases in the participants' knowledge test scores and the confidence to engage in patient-oriented research, but not self-rated knowledge, were observed after module completion. INTERPRETATION: Codevelopment with patients and caregivers, and refinement through comprehensive end-user testing, resulted in a training resource with exceptional usability that improved knowledge and confidence to engage in patient-oriented research in child health. Patient Engagement 101 is openly available online, and the methods used to develop and evaluate it may facilitate the creation and evaluation of similar capacity-building resources.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.9778/cmajo.20210336" target="_blank" rel="noreferrer noopener">10.9778/cmajo.20210336</a>
Rights
Information about rights held in and over the resource
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).
2022
2023 SE1 - Parent Perspectives
Abuloghod L
Buchanan F
Child
Child Health
Cmaj Open
Computer-Assisted Instruction
Connan V
Curriculum
Health Personnel
Humans
Jones NL
Macarthur C
McCreath GA
Participation
Patient
Pires L
User-Centered Design User-Computer Interface
Walsh CM
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
2023 Special Edition 1 - Parent Perspectives List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
2023 SE1 - Parent Perspectives
URL Address
<a href="http://doi.org/10.1097/mlr.0000000000001588" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1097/mlr.0000000000001588</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Short-term Focused Feedback: A Model to Enhance Patient Engagement in Research and Intervention Delivery
Publisher
An entity responsible for making the resource available
Medical Care
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Creator
An entity primarily responsible for making the resource
Sauers-Ford H; Statile AM; Auger KA; Wade-Murphy S; Gold JM; Simmons JM; Shah SS
Description
An account of the resource
BACKGROUND: Our grant from the Patient-Centered Outcomes Research Institute (PCORI) focused on the use of nurse home visits postdischarge for primarily pediatric hospital medicine patients. While our team recognized the importance of engaging parents and other stakeholders in our study, our project was one of the first funded to address transitions of care issues in patients without chronic illness; little evidence existed about how to engage acute stakeholders longitudinally. OBJECTIVE: This manuscript describes how we used both a short-term focused feedback model and longitudinal engagement methods to solicit input from parents, home care nurses, and other stakeholders throughout our 3-year study. RESULTS: Short-term focused feedback allowed the study team to collect feedback from hundreds of stakeholders. Initially, we conducted focus groups with parents with children recently discharged from the hospital. We used this feedback to modify our nurse home visit intervention, then used quality improvement methods with continued short-term focus feedback from families and nurses delivering the visits to adjust the visit processes and content. We also used their feedback to modify the outcome collection. Finally, during the randomized controlled trial, we added a parent to the study team to provide longitudinal input, as well as continued to solicit short-term focused feedback to increase recruitment and retention rates. CONCLUSION: Research studies can benefit from soliciting short-term focused feedback from many stakeholders; having this variety of perspectives allows for many voices to be heard, without placing an undue burden on a few stakeholders.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1097/mlr.0000000000001588" target="_blank" rel="noreferrer noopener">10.1097/mlr.0000000000001588</a>
Rights
Information about rights held in and over the resource
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).
2021
2023 SE1 - Parent Perspectives
Academies and Institutes
Aftercare/psychology
Auger KA
Gold JM
House Calls
Medical Care
Patient Outcome Assessment
Patient Participation
Pediatric
Psychology
Sauers-Ford H
Shah SS
Simmons JM
Stakeholder Participation
Statile AM
statistics & numerical data
statistics & numerical data Child Focus Groups Hospitals
statistics & numerical data Humans Parents/psychology Patient Discharge
Time Factors
Transitional Care
Wade-Murphy S
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
2023 Special Edition 1 - Parent Perspectives List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
2023 SE1 - Parent Perspectives
URL Address
<a href="http://doi.org/10.1136/bmjopen-2019-034433" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1136/bmjopen-2019-034433</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
I actually felt like I was a researcher myself.' On involving children in the analysis of qualitative paediatric research in the Netherlands
Publisher
An entity responsible for making the resource available
BMJ Open
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Creator
An entity primarily responsible for making the resource
Luchtenberg ML; Maeckelberghe ELM; Verhagen AE
Description
An account of the resource
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.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1136/bmjopen-2019-034433" target="_blank" rel="noreferrer noopener">10.1136/bmjopen-2019-034433</a>
Rights
Information about rights held in and over the resource
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).
2020
2023 SE1 - Parent Perspectives
Adolescent
Biomedical Research
Bmj Open
Child
children involvement
Female
Humans
Interviews As Topic
Luchtenberg ML
Maeckelberghe ELM
Male
Netherlands
Paediatrics
Patient Participation
Pediatrics/methods
Qualitative Research
Research Subjects
Verhagen AE
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
2023 Special Edition 1 - Parent Perspectives List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
2023 SE1 - Parent Perspectives
URL Address
<a href="http://doi.org/10.1136/bmjopen-2021-059006" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1136/bmjopen-2021-059006</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Establishing a multistakeholder research agenda: lessons learned from a James Lind Alliance Partnership
Publisher
An entity responsible for making the resource available
BMJ Open
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Creator
An entity primarily responsible for making the resource
Jongsma KR; Milota MM
Description
An account of the resource
OBJECTIVE: The James Lind Alliance (JLA) offers a method for better aligning health and care agenda's with the needs of patients, carers and clinicians by bringing them together in a Priority Setting Partnership (PSP). In this paper, we draw attention to crucial lessons learnt when establishing such a shared research agenda. KEY ARGUMENTS: Having specific strategies and plans in place for maximising dialogic processes in a PSP can help facilitate and maintain trust, innovation and equal inclusion. CONCLUSION: Eight lessons learnt have been formulated, based on our observations and reflections on the JLA PSP and our expertise on patient participation and participatory research.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1136/bmjopen-2021-059006" target="_blank" rel="noreferrer noopener">10.1136/bmjopen-2021-059006</a>
Rights
Information about rights held in and over the resource
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).
2022
2023 SE1 - Parent Perspectives
Biomedical Research
Bmj Open
Caregivers
ETHICS (see Medical Ethics)
Health Policy
Health Priorities
Humans
Jongsma KR
Medical Ethics
Milota MM
Paediatric rheumatology
Patient Participation
Quality In Health Care
Research Design
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
2023 Special Edition 1 - Parent Perspectives List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
2023 SE1 - Parent Perspectives
URL Address
<a href="http://doi.org/10.1111/hex.13227" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1111/hex.13227</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Shortening and validation of the Patient Engagement In Research Scale (PEIRS) for measuring meaningful patient and family caregiver engagement
Publisher
An entity responsible for making the resource available
Health Expectations
Date
A point or period of time associated with an event in the lifecycle of the resource
2021
Creator
An entity primarily responsible for making the resource
Hamilton CB; Hoens AM; McKinnon AM; McQuitty S; English K; Hawke LD; Li LC
Description
An account of the resource
OBJECTIVE: To shorten the Patient Engagement In Research Scale (PEIRS) to its most essential items and evaluate its measurement properties for assessing the degree of patients' and family caregivers' meaningful engagement as partners in research projects. METHODS: A prospective cross-sectional web-based survey in Canada and the USA, and also paper-based in Canada. Participants were patients or family caregivers who had engaged in research projects within the last 3 years, were ≥17 years old, and communicated in English. Extensive psychometric analyses were conducted. RESULTS: 119 participants: 99 from Canada, 74 female, 51 aged 17-35 years and 50 aged 36-65 years, 60 had post-secondary education, and 74 were Caucasian/white. The original 37-item PEIRS was shortened to 22 items (PEIRS-22), mainly because of low inter-item correlations. PEIRS-22 had a single dominant construct that accounted for 55% of explained variance. Analysis of PEIRS-22 scores revealed the following: (1) acceptable floor and ceiling effects (<15%), (2) internal consistency (ordinal alpha = 0.96), (3) structural validity by fit to a Rasch measurement model, (4) construct validity by moderate correlations with the Public and Patient Engagement Evaluation Tool, (5) good test-retest reliability (ICC(2,1) = 0.86) and (6) interpretability demonstrated by significant differences among PEIRS-22 scores across three levels of global meaningful engagement in research. CONCLUSIONS: The shortened PEIRS is valid and reliable for assessing the degree of meaningful patient and family caregiver engagement in research. It enables standardized assessment of engagement in research across various contexts. PATIENT OR PUBLIC CONTRIBUTION: A researcher-initiated collaboration, patient partners contributed from study conception to manuscript write-up.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1111/hex.13227" target="_blank" rel="noreferrer noopener">10.1111/hex.13227</a>
Rights
Information about rights held in and over the resource
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).
2021
2023 SE1 - Parent Perspectives
Adolescent
Caregivers
Cross-sectional Studies
English K
family caregiver
Female
Hamilton CB
Hawke LD
Health Expectations
Hoens AM
Humans
Li LC
McKinnon AM
McQuitty S
patient and public involvement
Patient Participation
patient-oriented research
Prospective Studies
Psychometrics
reliability and validity
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
2023 Special Edition 1 - Parent Perspectives List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
2023 SE1 - Parent Perspectives
URL Address
<a href="http://doi.org/10.1111/tmi.13702" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1111/tmi.13702</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Adolescent Health Series: Engagement with young people as partners in health research: Four case studies from Sub-Saharan Africa
Publisher
An entity responsible for making the resource available
Tropical Medicine & International Health
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Creator
An entity primarily responsible for making the resource
Doyle AM; Dziva Chikwari C; Majozi N; Simwinga M; Mayingire GR; Simbeye K; Dringus S; Bernays S
Description
An account of the resource
OBJECTIVES: Existing health services for young people (YP)(10-24 years), which are predominantly designed for but not with young people, often do not meet YP's needs. The 2018 Global Consensus Statement on meaningful adolescent and youth engagement affirms that YP have a fundamental right to actively and meaningfully engage in all matters that affect their lives. We present four case studies from three countries in sub-Saharan Africa as practical examples of the engagement of young people as partners in health research. We critically reflect on best practices to inform and guide the increasing adoption of collaborative approaches. METHODS: We developed a narrative summary of each case study through review of study documentation and discussions with research staff and young people. A youth engagement framework was used to describe partnership activities according to the following dimensions: purpose, process, positioning, perspective, power relations, place and protection. We reflected on innovative practices used, overall level of participation achieved and strategies to address ethical, logistical and/or financial barriers. RESULTS: In all case studies, we found evidence of engagement activities that aligned with the Global Consensus Statement on Meaningful Youth Engagement. However, access to participation was often uneven and despite efforts, marginalised young people continue to have insufficient opportunities to engage. Furthermore, although young people had some opportunity to influence the research methods, many of the key design decisions had been determined prior to their involvement. In our case studies, researchers had built in insufficient opportunities to evaluate the level and impact of youth engagement. CONCLUSIONS: We therefore recommend early involvement of young people in the research process so that they can contribute to setting the research agenda, the design of planned studies and thus increase the scope of their engagement from the beginning. Youth engagement activities need to be evaluated from the perspective of all stakeholders including young people themselves with a focus on opportunities to engage, the level of engagement achieved and impact of engagement. From the beginning, researchers should provide space for learning, and involve young people in encouraging critical reflection of what does not yet work, as well as what does, to enable improvements.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1111/tmi.13702" target="_blank" rel="noreferrer noopener">10.1111/tmi.13702</a>
Rights
Information about rights held in and over the resource
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).
2022
2023 SE1 - Parent Perspectives
Adolescent
Africa
Bernays S
Child
community-based
Doyle AM
Dringus S
Dziva Chikwari C
Female
Health Services
Humans
Majozi N
Male
Mayingire GR
Participatory
Patient Participation Young Adult Africa adolescence health participatory research research participation young people youth engagement
Research
Simbeye K
Simwinga M
South of the Sahara
Tropical Medicine & International Health
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
2023 Special Edition 1 - Parent Perspectives List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
2023 SE1 - Parent Perspectives
URL Address
<a href="http://doi.org/10.1093/infdis/jiac110" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1093/infdis/jiac110</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Patient Involvement in RSV Research: Towards Patients Setting the Research Agenda
Publisher
An entity responsible for making the resource available
Journal of Infectious Diseases
Date
A point or period of time associated with an event in the lifecycle of the resource
2022
Creator
An entity primarily responsible for making the resource
Derksen-Lazet ND; Parmentier CEJ; Wildenbeest JG; Bont LJ
Description
An account of the resource
Respiratory syncytial virus (RSV) causes a substantial disease burden among children, elderly and immunocompromised adults. Recognition of patient involvement in research is gradually increasing. Most research is being carried out without active patient involvement other than patients participating as study subjects, and most knowledge gained through research only partially reaches the general public. Since 2016, the RSV Patient Advisory Board has officially been involved as an advisory group in the Respiratory Syncytial Virus Consortium in Europe (RESCEU). What started as a small single-center initiative, is now growing towards an international organization providing patient perspectives as inputs to scientists, and improving awareness of RSV. This article summarizes the history, current role, and future aims of the RSV Patient Advisory Board as an advocate to improve patient involvement in research. RSV patients and their representatives are important stakeholders in setting the global research agenda, and educating patients, professionals, and the general public.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1093/infdis/jiac110" target="_blank" rel="noreferrer noopener">10.1093/infdis/jiac110</a>
Rights
Information about rights held in and over the resource
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).
2022
2023 SE1 - Parent Perspectives
Adult Aged Child Europe Humans Immunocompromised Host Patient Participation
Awareness
Bont LJ
Derksen-Lazet ND
Human
Journal of Infectious Diseases
Parmentier CEJ
patient involvement
patient network
Patient Participation
Patient Perspective
Respiratory Syncytial Virus
Respiratory Syncytial Virus Infections/prevention & control
Wildenbeest JG
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
2023 Special Edition 1 - Parent Perspectives List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
2023 SE1 - Parent Perspectives
URL Address
<a href="http://doi.org/10.1177/2374373520938909" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1177/2374373520938909</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Patient Experience Research in Children and Young People's Mental Health Services in England: A Route to Genuine Service Transformation or Just Pretty Pictures and Tasteful Color Schemes?
Publisher
An entity responsible for making the resource available
Journal of Patient Experience
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Creator
An entity primarily responsible for making the resource
Crosier A; Knightsmith P
Description
An account of the resource
The personalization of service provision and responding to patients' expressed needs are key components of government plans to improve children and young people's mental health services in England. This qualitative study explored the use of patient experience research in these services. Despite national level commitments to listening to and acting on the "patient's voice," both service users (young people) and parents of this group reported never having been invited to participate in patient experience research. Most professional respondents reported that such research was frequently tokenistic and conducted solely to meet an administrative requirement. Senior policy makers justified the limited investment in, and use made of patient experience research, by pointing to what they felt were more urgent priorities facing children and young people's mental health services. These included unprecedented levels of demand and critical underfunding of mental health services and related youth- and community-based services. The conceptualization of patient experience research within the National Health Service (NHS) as a service improvement issue was found to have led to its status being diminished to one concerned with relatively cosmetic matters, such as the color scheme or choice of pictures on the walls of clinics. Senior policy makers argued that it was important to rethink the role and value of patient experience research, and to recognize its unique contribution to addressing the existential questions facing services.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/2374373520938909" target="_blank" rel="noreferrer noopener">10.1177/2374373520938909</a>
Rights
Information about rights held in and over the resource
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).
2020
2023 SE1 - Parent Perspectives
children and young people
Crosier A
Journal of Patient Experience
Knightsmith P
Mental Health
patient feedback
patient perspectives/narratives
Patient Safety
Patient Satisfaction
Qualitative Methods
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
2023 Special Edition 1 - Parent Perspectives List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
2023 SE1 - Parent Perspectives
URL Address
<a href="http://doi.org/10.1111/hex.12972" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1111/hex.12972</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Laying the groundwork: Building relationships for public and patient involvement in pre-clinical paediatric research
Publisher
An entity responsible for making the resource available
Health Expectations
Date
A point or period of time associated with an event in the lifecycle of the resource
2020
Creator
An entity primarily responsible for making the resource
Costello W; Dorris E
Description
An account of the resource
CONTEXT: Public and patient involvement is increasingly becoming an expectation of research funders and policy makers. Not all areas of health research are public-facing. Here, we outline an approach for building the skills and developing the relationships required for downstream public and patient involvement in pre-clinical adolescent rheumatology research. OBJECTIVE: To design a methodology for improving researcher-adolescent communications specifically aimed at mutual relationship building for PPI. Deliberate and effective preparation in advance of research involvement to improve the downstream success of that involvement. DESIGN: A research seminar and research skills workshop conducted entirely in 'plain English' for adolescents and their siblings aged 10-20. Upskilling of pre-clinical researchers for effective public involvement. SETTING AND PARTICIPANTS: Study co-design between the voluntary charity Irish Children's Arthritis Network and the academic research centre UCD Centre for Arthritis Research. Fifteen adolescents aged 10-20 years old living with arthritis, four pre-clinical researchers and one qualitative researcher investigating adolescent or paediatric arthritis. MAIN VARIABLES STUDIED: Relationship building and communications for effective downstream public involvement in pre-clinical and laboratory research. RESULTS: The methodology outlined here was received extremely positively. Both researchers and adolescents living with arthritis felt more comfortable communicating, more knowledgeable about juvenile arthritis and research, and more able to engage in co-operative dialogue. DISCUSSION: Engaging early, considering the needs of the community and developing appropriate involvement methodology can enable involvement in pre-clinical research. CONCLUSIONS: Dedicating resources to building relationships and skills necessary for co-operative research involvement can overcome some of the barriers to public involvement in pre-clinical and laboratory-based research.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1111/hex.12972" target="_blank" rel="noreferrer noopener">10.1111/hex.12972</a>
Rights
Information about rights held in and over the resource
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).
2020
2023 SE1 - Parent Perspectives
administrative personnel
Adolescent Arthritis
Child
Communication Barriers
Community Participation
Cooperative Behavior
Costello W
Dorris E
Health Expectations
Interpersonal Relations
juvenile
Methods
Paediatrics
patient engagement
patient involvement
Patient Participation
Pediatrics
Personnel
Research
Siblings
Stakeholder Participation
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
2023 Special Edition 1 - Parent Perspectives List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
2023 SE1 - Parent Perspectives
URL Address
<a href="http://doi.org/10.1352/1934-9556-52.2.112" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1352/1934-9556-52.2.112</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Family experience in a regional participant contact registry for research on intellectual disability
Publisher
An entity responsible for making the resource available
Intellectual and Developmental Disabilities
Date
A point or period of time associated with an event in the lifecycle of the resource
2014
Creator
An entity primarily responsible for making the resource
Conners FA; Phillips BA; Rhodes JD; Hamilton JC
Description
An account of the resource
Participant recruitment is one of the most significant challenges in research on intellectual disability (ID). One potential solution is to develop a participant contact registry, which allows the researcher to contact participants directly rather than recruiting through multiple schools or service agencies. The authors describe the development of one such registry and results of a survey of registry families. Results suggest that families joined the registry to help others, they hope research in the ID field improves the daily lives of individuals with ID and their families, and they find research participation to be a positive experience. However, logistic concerns can be an important barrier to their research participation, and they would like more information about the research study both before and after participating.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1352/1934-9556-52.2.112" target="_blank" rel="noreferrer noopener">10.1352/1934-9556-52.2.112</a>
Rights
Information about rights held in and over the resource
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).
2014
2023 SE1 - Parent Perspectives
Adolescent
Adult Child
Child
Conners FA
Family
Female
Hamilton JC
Humans
Infant
Intellectual and Developmental Disabilities
Intellectual Disability
Male
Middle Aged
Patient Selection
Phillips BA
Preschool
Registries
Research
Rhodes JD
Surveys And Questionnaires
Young Adult
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
2023 Special Edition 1 - Parent Perspectives List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
2023 SE1 - Parent Perspectives
URL Address
<a href="http://doi.org/10.1177/1355819618762960" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1177/1355819618762960</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
What constitutes meaningful engagement for patients and families as partners on research teams?
Publisher
An entity responsible for making the resource available
Journal of Health Services Research & Policy
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Creator
An entity primarily responsible for making the resource
Black A; Strain K; Wallsworth C; Charlton SG; Chang W; McNamee K; Hamilton C
Description
An account of the resource
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.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1177/1355819618762960" target="_blank" rel="noreferrer noopener">10.1177/1355819618762960</a>
Rights
Information about rights held in and over the resource
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).
2018
2023 SE1 - Parent Perspectives
Adult Aged
Aged
Attitude To Health
Black A
Canada
Caregivers
Chang W
Charlton SG
Family and Patient Participation
family engagement
Hamilton C
Journal of Health Services Research & Policy
McNamee K
patient engagement in research
Patient experience
patient-oriented research
Psychology
Qualitative
Research Subjects
Researcher-Subject Relations
Strain K
Wallsworth C
Young Adult
-
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
2023 Special Edition 1 - Parent Perspectives List
Text
A resource consisting primarily of words for reading. Examples include books, letters, dissertations, poems, newspapers, articles, archives of mailing lists. Note that facsimiles or images of texts are still of the genre Text.
Citation List Month
2023 SE1 - Parent Perspectives
URL Address
<a href="http://doi.org/10.1080/23294515.2018.1430709" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1080/23294515.2018.1430709</a>
Dublin Core
The Dublin Core metadata element set is common to all Omeka records, including items, files, and collections. For more information see, http://dublincore.org/documents/dces/.
Title
A name given to the resource
Children's perspectives on the benefits and burdens of research participation
Publisher
An entity responsible for making the resource available
AJOB Empirical Bioethics
Date
A point or period of time associated with an event in the lifecycle of the resource
2018
Creator
An entity primarily responsible for making the resource
Barned C; Dobson J; Stintzi A; Mack D; O'Doherty KC
Description
An account of the resource
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.
Identifier
An unambiguous reference to the resource within a given context
<a href="http://doi.org/10.1080/23294515.2018.1430709" target="_blank" rel="noreferrer noopener">10.1080/23294515.2018.1430709</a>
Rights
Information about rights held in and over the resource
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).
2018
2023 SE1 - Parent Perspectives
Adolescent
AJOB empirical bioethics
Attitude
Barned C
benefits burdens
Canada
Child
Child Health
Children
Chronic Disease
Delivery of Health Care
Dobson J
Emotions
Ethics
Female
health care systems
Humans
Inflammatory Bowel Diseases
Informed Consent By Minors/psychology
Learning
Mack D
Male
Motivation
O'Doherty KC
Patient Participation
psychology Qualitative Research
Research
Research Subjects
Stintzi A