1 40 7 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 March 2025 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 March List 2025 URL Address <a href="http://doi.org/10.1111/hex.70120" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1111/hex.70120</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 and Public Involvement Work With Parents of Children With Life-Limiting Conditions and Bereaved Parents: A Rapid Systematic Review 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 2024 Subject The topic of the resource bereavement; child parent relation; child; community participation; human; patient participation; procedures; psychology Creator An entity primarily responsible for making the resource Holder P; Page B; Hackett J; Mitchell S; Fraser LK Description An account of the resource Abstract Background: Guidance and principles for involving the public in research or service planning exist but are not specific to the needs of parents of children with life-limiting conditions or bereaved parents. Aim: Review the evidence on involving parents of children with life-limiting conditions and bereaved parents in research, service planning and advocacy, and use this to develop best practice guidance. Methods: Rapid review following the Cochrane Rapid Reviews Methods Group Guidance. MEDLINE and EMBASE were searched for primary studies of any design and literature/systematic reviews, and grey literature searching was conducted. Sources reporting on involving parents of children with life-limiting conditions or bereaved parents in healthcare, research, or charity work in any setting, were included. Data were charted using the UK standards for public involvement in research (PPI). Two PPI consultation workshops were conducted with parents (n = 13) and healthcare professionals/charity representatives (n = 7). Results: Six sources were included. Four reported benefits of parental involvement and two reported burdens. In relation to best practice, two reported on the importance of inclusive opportunities, three on working together, four on support and learning, three on communications, one on impact, and one on governance. PPI consultation workshops highlighted new factors which were not present in the literature around communication and understanding the impact of involvement. Conclusion: Organisations working with this group should consider offering inclusive approaches to improve diversity, levelling power imbalances, ensuring flexibility of approach, and appropriate communication and impact. Patient or public contribution: The study was conducted in collaboration with 13 parents of children with life-limiting conditions and bereaved parents, and seven palliative care professionals. The group were involved at key stages of the review and contributed to the development of the findings and conduct of the review. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1111/hex.70120" target="_blank" rel="noreferrer noopener">10.1111/hex.70120</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). 2024 Bereavement Child Child Parent Relation Community Participation Fraser LK Hackett J Health Expectations Holder P Human March List 2025 Mitchell S Page B Patient Participation Procedures Psychology 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 February 2024 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 February List 2024 URL Address <a href="http://doi.org/10.1111/hex.13925" target="_blank" rel="noreferrer noopener"> http://doi.org/10.1111/hex.13925</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 do parents think about the quality and safety of care provided by hospitals to children and young people with an intellectual disability? A qualitative study using thematic analysis 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 2023 Subject The topic of the resource child; disability; article; controlled study; female; human; male; palliative therapy; preschool child; child parent relation; aged; interview; parent; interpersonal communication; school child; intellectual impairment; qualitative research; side effect; hospital care; adolescent; health care system; drug therapy; semi structured interview; adverse drug reaction; patient safety; pediatric hospital; thematic analysis; special situation for pharmacovigilance; kindness Creator An entity primarily responsible for making the resource Ong N; Lucien A; Long J; Weise J; Burgess A; Walton M Description An account of the resource Objectives: Children with intellectual disability experience patient safety issues resulting in poor care experiences and health outcomes. This study sought to identify patient safety issues that pertain to children aged 0-16 years with intellectual disability admitted to two tertiary state-wide children's hospitals and a children's palliative care centre; to describe and understand these factors to modify the Australian Patient Safety Education Framework to meet the particular needs for children and young people with intellectual disability. Design, setting and participants: Parents of children with intellectual disability from two paediatric hospitals and a palliative care unit participated in semi-structured interviews to elicit their experiences of their child's care in the context of patient safety. Thirteen interviews were conducted with parents from various backgrounds with children with intellectual, developmental and medical diagnoses. Results: Eight themes about safety in hospital care for children and young people with intellectual disability emerged from thematic analyses: Safety is not only being safe but feeling safe; Negative dismissive attitudes compromise safety, quality and care experience; Parental roles as safety advocates involve being heard, included and empowered; Need for purposeful and planned communication and care coordination to build trust and improve care; Systems, processes and environments require adjustments to prevent patient safety events; Inequity in care due to lack of resources and skills, Need for training in disability-specific safety and quality issues and Core staff attributes: Kindness, Patience, Flexibility and Responsiveness. Parents highlighted the dilemma of being dismissed when raising concerns with staff and being required to provide care with little support. Parents also reported a lack of comprehensive care coordination services. They noted limitations within the healthcare system in accommodating reasonable adjustments for a family and child-centred context. Conclusions: The development of an adapted Patient Safety Education Framework for children with intellectual disability should consider ways for staff to transform attitudes and reduce bias which leads to adaptations for safer and better care. In addition, issues that apply to quality and safety for these children can be generalised to all children in the hospital. Patient and public contribution: Parent advocates in the project advisory team were shown the questions to determine their appropriateness for the interviews. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/10.1111/hex.13925" target="_blank" rel="noreferrer noopener">10.1111/hex.13925</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). 2023 Adolescent Adverse Drug Reaction Aged Article Burgess A Child Child Parent Relation Controlled Study Disability Drug Therapy February List 2024 Female Health Care System Health Expectations Hospital care Human Intellectual Impairment Interpersonal Communication Interview kindness Long J Lucien A Male Ong N Palliative Therapy Parent Patient Safety Pediatric Hospital Preschool Child Qualitative Research School Child Semi Structured Interview Side Effect special situation for pharmacovigilance Thematic Analysis Walton M Weise J 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 February 2023 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 February List 2023 URL Address <a href="http://doi.org/https://doi.org/10.1111/hex.13645" target="_blank" rel="noreferrer noopener"> http://doi.org/https://doi.org/10.1111/hex.13645</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 Bereaved parents involvement in maternity hospital perinatal death review processes: ‘Nobody even thought to ask us anything’ 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 2022 Subject The topic of the resource bereaved parent; maternity; hospital death; reviews; parents involvement; perinatal death; stillbirth Creator An entity primarily responsible for making the resource Helps Ä; O'Donoghue K; O'Connell O; Leitao S Description An account of the resource Abstract Introduction The death of a baby is devastating for parents, families and staff involved. Involving bereaved parents in their baby's care and in the maternity hospital perinatal death review can help parents manage their bereavement and plan for the future. In Ireland, bereaved parents generally have not been involved in this review process. The aim of our study was to assess parents' perception of how they may be appropriately involved in the maternity hospital perinatal death review in ways that benefit them and the review process itself. Methods Bereaved parents (n?=?20) in Ireland were invited to take part in semistructured interviews. Thematic analysis was carried out on the interview transcripts. Results Four main themes were identified based on the participants' views and opinions on how they experienced the review process and how they feel this process may be improved. The themes reflect the journey of the parents through the different stages of the review process: Throughout process; On leaving the hospital; Interaction with the hospital ?waiting in limbo?; Review itself. Identified subthemes highlighted essential aspects of this process and care provided to parents. For the parents, open, honest communication with staff, as well as having a key hospital contact was essential. Parents wished to provide feedback on their experience and wanted to be included in the review of their baby's death, in a way that was sensitive to their needs and the hospital's schedule. Conclusion A respectful, flexible system that allows bereaved parents' involvement in their baby's perinatal death review and is tailored to their needs is essential. A collaborative process between staff and parents can highlight clinical areas in need of change, enhance lessons learned, improve bereavement services and may prevent future perinatal deaths. Public Contribution Bereaved parents were interviewed for this study. Identifier An unambiguous reference to the resource within a given context <a href="http://doi.org/https://doi.org/10.1111/hex.13645" target="_blank" rel="noreferrer noopener">https://doi.org/10.1111/hex.13645</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 Bereaved Parent February List 2023 Health Expectations Helps Ä hospital death Leitao S Maternity O'Connell O O'Donoghue K parents involvement Perinatal Death Reviews Stillbirth 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/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 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 September 2017 List Notes <p>Using Smart Source Parsing ( (pp 2015. Date of Publication: 01 Oct 2015</p> 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 Problems And Hopes Perceived By Mothers, Fathers And Physicians Of Children Receiving Palliative Care 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 2015 Subject The topic of the resource Hope; Palliative Therapy; Physician; Problem Solving; Psychology; Adolescent; Child; Decision Making; Father; Female; Human; Human Relation; Infant; Male; Mother; Newborn; Preschool Child; Quality Of Life; Young Adult Creator An entity primarily responsible for making the resource Hill D L; Miller V A; Hexem K R; Carroll K W; Faerber J A; Kang T; Feudtner C Description An account of the resource BACKGROUND: The quality of shared decision making for children with serious illness may depend on whether parents and physicians share similar perceptions of problems and hopes for the child. OBJECTIVE: (i) Describe the problems and hopes reported by mothers, fathers and physicians of children receiving palliative care; (ii) examine the observed concordance between participants; (iii) examine parental perceived agreement; and (iv) examine whether parents who identified specific problems also specified corresponding hopes, or whether the problems were left 'hopeless'. METHOD: Seventy-one parents and 43 physicians were asked to report problems and hopes and perceived agreement for 50 children receiving palliative care. Problems and hopes were classified into eight domains. Observed concordance was calculated between parents and between each parent and the physicians. RESULTS: The most common problem domains were physical body (88%), quality of life (74%) and medical knowledge (48%). The most common hope domains were quality of life (88%), suffering (76%) and physical body (39%). Overall parental dyads demonstrated a high percentage of concordance (82%) regarding reported problem domains and a lower percentage of concordance on hopes (65%). Concordance between parents and physicians regarding specific children was lower on problem (65-66%) and hope domains (59-63%). Respondents who identified problems regarding a child's quality of life or suffering were likely to also report corresponding hopes in these domains (93 and 82%, respectively). CONCLUSION: Asking parents and physicians to talk about problems and hopes may provide a straightforward means to improve the quality of shared decision making for critically ill children. Identifier An unambiguous reference to the resource within a given context 10.1111/hex.12078 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). 2015 Adolescent Carroll K W Child Decision Making Faerber J A Father Female Feudtner C Health Expectations Hexem K R Hill D L Hope Human Human Relation Infant Kang T Male Miller V A Mother Newborn Palliative Therapy Physician Preschool Child Problem Solving Psychology Quality Of Life September 2017 List Young Adult 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 September 2016 List 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 Keeping All Options Open: Parents' Approaches To Advance Care Planning 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 2016 Subject The topic of the resource Advance Care Planning; Children and Young People; Interviews; Life-limiting Conditions; Life-threatening Illnesses; Parents Creator An entity primarily responsible for making the resource Beecham E; Oostendorp L; Crocker J; Kelly P; Dinsdale A; Hemsley J; Russell J; Jones L; Bluebond-Langner M Description An account of the resource BACKGROUND: Early engagement in advance care planning (ACP) is seen as fundamental for ensuring the highest standard of care for children and young people with a life-limiting condition (LLC). However, most families have little knowledge or experience of ACP. OBJECTIVE: To investigate how parents of children and young people with LLCs approach and experience ACP. METHODS: Open-ended, semi-structured interviews were conducted with parents of 18 children; nine children who were currently receiving palliative care services, and nine children who had received palliative care and died. Verbatim transcripts of audiotaped interviews were analysed following principles of grounded theory while acknowledging the use of deductive strategies, taking account of both the child's condition, and the timing and nature of decisions made. RESULTS: Parents reported having discussions and making decisions about the place of care, place of death and the limitation of treatment. Most decisions were made relatively late in the illness and by parents who wished to keep their options open. Parents reported different levels of involvement in a range of decisions; many wished to be involved in decision making but did not always feel able to do so. DISCUSSION: This study highlights that parents' approaches to decision making vary by the type of decision required. Their views may change over time, and it is important to allow them to keep their options open. We recommend that clinicians have regular discussions over the course of the illness in an effort to understand parents' approaches to particular decisions rather than to drive to closure prematurely. Identifier An unambiguous reference to the resource within a given context 10.1111/hex.12500 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). 2016 Advance Care Planning Beecham E Bluebond-Langner M children and young people Crocker J Dinsdale A Health Expectations Hemsley J Interviews Jones L Kelly P Life-limiting Conditions Life-threatening Illnesses Oostendorp L Parents Russell J September 2016 List