Objectives
The current coronavirus disease 2019 (COVID‐19) pandemic stresses an urgency to accelerate much‐needed health service reform. Rapid and courageous changes being made to address the ...immediate impact of the pandemic are demonstrating that the means and technology to enable new models of health care exist. For example, innovations such as electronic patient portals (ePortal) can facilitate (a) radical reform of outpatient care; (b) cost containment in the economically constrained aftermath of the pandemic; (c) environmental sustainability by reduction of unnecessary journeys/transport. Herein, the development of Providing Individualised Services and Care in Epilepsy (PiSCES), an ePortal to the Irish National Epilepsy Electronic Patient Record, is demonstrated. This project, which pre‐dates the COVID‐19 crisis, aims to facilitate better patient‐ and family‐centered epilepsy care.
Methods
A combination of ethnographic research, document analysis, and joint application design sessions was used to elicit PiSCES requirements. From these, a specification of desired modules of functionality was established and guided the software development.
Results
PiSCES functional features include “My Epilepsy Care Summary,” “My Epilepsy Care Goals,” “My Epilepsy Clinic Letters,” “Help Us Measure Your Progress,” “Prepare For Your Clinic Visit,” “Information for Your Healthcare Provider.” The system provides people with epilepsy access to, and engages them as co‐authors of, their own medical record. It can promote improved patient‐clinician partnerships and facilitate patient self‐management.
Significance
In the aftermath of COVID‐19, it is highly unlikely that the healthcare sector will return to a “business as usual” way of delivering services. The pandemic is expected to accelerate adoption of innovations like PiSCES. It is therefore a catalyst for change that will deliver care that is more responsive to individual patient needs and preferences.
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BFBNIB, FZAB, GIS, IJS, KILJ, NLZOH, NUK, OILJ, SAZU, SBCE, SBMB, UL, UM, UPUK
Objective
Public and patient involvement is increasingly embedded as a core activity in research funding calls and best practice guidelines. However, there is recognition of the challenges that ...prevail to achieve genuine and equitable forms of engagement. Our objective was to identify the mechanisms and resources that enable the reciprocal involvement of seldom heard groups in health and social care research.
Methods
A rapid realist review of the literature that included: (a) a systematic search of CINAHL, PsycINFO, PubMed and Open Grey (2007‐2017); (b) documents provided by expert panel members of relevant journals and grey literature. Six reference panels were undertaken with homeless, women's, transgender, disability and Traveller and Roma organizations to capture local insights. Data were extracted into a theory‐based grid linking context to behaviour change policy categories.
Main results
From the review, 20 documents were identified and combined with the reference panel summaries. The expert panel reached consensus about 33 programme theories. These relate to environmental and social planning (7); service provision (6); guidelines (4); fiscal measures (6); communication and marketing (4); and regulation and legislation (6).
Conclusions
While there is growing evidence of the merits of undertaking PPI, this rarely extends to the meaningful involvement of seldom heard groups. The 33 programme theories agreed by the expert panel point to a variety of mechanisms and resources that need to be considered. Many of the programme theories identified point to the need for a radical shift in current practice to enable the reciprocal involvement of seldom heard groups.
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BFBNIB, DOBA, FZAB, GIS, IJS, IZUM, KILJ, NLZOH, NUK, OILJ, PILJ, PNG, SAZU, SBCE, SBMB, SIK, UILJ, UKNU, UL, UM, UPUK, VSZLJ
Background In paediatric palliative and bereavement care, providing comprehensive support that extends beyond medical treatment to address the emotional and psychosocial needs of children and their ...families is essential. Memory-making interventions play a critical role in capturing cherished moments and fostering emotional resilience. However, widespread consensus on the foundation and scope of memory-making interventions in paediatric contexts remains sparse. This review aims to identify, appraise, and synthesise the evidence on memory-making interventions for children with life-limiting or life-threatening conditions and their family members receiving palliative or bereavement care. Methods This systematic review will follow the Preferred Reporting Items for Systematic Reviews and Meta-Analysis (PRISMA). A systematic search will be undertaken from January 1, 1985, to February 27, 2024, across the following databases: PubMed, EMBASE, CINAHL (EBSCO), PsycINFO (EBSCO), Web of Science, the Cochrane Library, and Scopus. Studies across diverse research designs that examine children (0-19 years) with life-limiting or life-threatening conditions undergoing memory-making interventions with psychosocial or other outcomes will be included. Screening, data extraction, and quality appraisal will be performed by two independent reviewers, with a third reviewer resolving discrepancies. Joanna Briggs Institute guidelines for conducting mixed methods systematic reviews will be used to inform the data analysis and synthesis process. Conclusions This review will provide critical insights into the existing evidence base on memory-making interventions in paediatric palliative and bereavement care, highlighting psychosocial and other impacts, implementation factors, and evidence quality. By identifying best practices and gaps in knowledge, this evidence review may inform future research and intervention design, or adaptation, and contribute to the enhancement of healthcare for children with life-limiting and life-threatening conditions and their families. Registration This review was registered in PROSPERO, the International Prospective Register of Systematic Reviews (CRD42024521388; 18/03/2024).
Models of care developed to improve the lives of people with chronic diseases highlight integrated care as essential to meeting their needs and achieving person (patient)-centered care (PCC). ...Nevertheless, barriers to collaborative practice and siloed work environments persist. To set in motion some groundwork for intersectoral collaboration this study brought two expert groups of epilepsy care practitioners together to engage in participatory action research (PAR). The expert practitioner groups were hospital-based epilepsy specialist nurses (ESNs) and community-based resource officers (CROs). The PAR highlighted, that while the participants share a mutual interest in caring for people with epilepsy, underdeveloped CRO-ESN relationships, arising from unconscious bias and ambiguity can result in missed opportunities for optimal care coordination with consequent potential for unnecessary replication and waste of finite resources. However, through dialogue and critical self-reflection, a growing emotional connection between the disciplines evolved over the course of the PAR. This allowed for buds of collaboration to develop with CROs and ESNs working together to tackle some of the key barriers to their collaboration.
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DOBA, IJS, IZUM, KILJ, NUK, OILJ, PILJ, PNG, SAZU, SIK, UILJ, UKNU, UL, UM, UPUK, VSZLJ
The aim of this review was to conduct a meta-synthesis of the experiences and perceptions of self-management of type 1 diabetes of children and young people living with type 1 diabetes (CYPDs). Six ...databases were systematically searched for studies with qualitative findings relevant to CYPDs’ (aged 8–18 years) experiences of self-management. A thematic synthesis approach was used to combine articles and identify analytical themes. Forty articles met the inclusion criteria. Two analytical themes important to CYPDs’ experiences and perceptions of self-management were identified: (1) negotiating independence and (2) feeling in control. The synthesis contributes to knowledge on contextual factors underpinning self-management and what facilitates or impedes transition towards autonomous self-management for CYPDs.
This paper presents a review of findings from qualitative studies on children’s experience of feeling different when living with the long term conditions; diabetes, epilepsy and asthma. Following ...electronic database and hand searches of reference lists of identified papers, eighteen studies were selected for inclusion in the review. These studies revealed three common themes; participation in everyday life-restrictions and adjustments; treatment regimens—constraining and enabling; and communication—disclosure, stigma and support. Across these themes it was evident that children felt different physically and socially and they grappled constantly with balancing the dilemma of feeling and acting normal or feeling, being and revealing difference.
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GEOZS, IJS, IMTLJ, KILJ, KISLJ, NUK, OILJ, PNG, SAZU, SBCE, SBJE, UL, UM, UPCLJ, UPUK
The University College Dublin (UCD) Public and Patient Invovlement (PPI) ignite program is focused on embedding PPI in health and social care related research, education and training, professional ...practice and administration. During a PPI knowledge sharing event challenges were noted during the pre-commencement stage of research projects. This stage includes the time before a research projects/partnership starts or when funding is being applied for. As a response, we agreed there was a need to spend time developing a values-based approach to be used from the pre-commencement of PPI projects and partnerships. Values are deeply held ideals that people consider to be important. They are vital in shaping our attitudes and motivating our choices and behaviours.
Using independent facilitators, we invited a diverse group of participants to a full-day workshop in February. During the workshop, the concept of a values statement and values-based approaches was introduced. The group via a majority consensus, agreed on a core set of values and a shared understanding of them. After the workshop, a draft was shared with participants for further comment and final agreement.
The workshop had 22 people representing experts by experience, PPI charity partners, funders, academics and national PPI Ignite partners. The group via consensus identified four values of respect, openness, reciprocity and flexibility for the pre-commencement stage. A frequently reported experience of PPI partners was that some felt that the pre-commencement activities appeared at times like a performance; an act that had to be completed in order to move to the next stage rather than a genuine interest in a mutually beneficial partnership. Being open and transparent with all invovled that the funding application may not be successful was stressed. Another important feature related to 'openness' was the 'spaces' and 'places' in which meetings between partners could occur in an accessible and equitable way. The issue of 'space' is particularly critical for the involvement of seldom heard groups. The benefits of the research are often clear for academics, but for PPI partners, these are often less certain. To achieve reciprocity, academic and PPI partners need to engage in a timely, repeated and transparent dialogue to achieve beneficial outcomes for all stakeholders. Being open to new inputs and differing modes of knowledge and ideas was also stressed. For some, this will require a change in attitudes and behaviours and should result in more collective decision making. Several areas were identified using the four values.
This work via majority consensus identified four values of respect, openness, reciprocity, and flexibility for the pre-commencement stage. These values should be used to support inclusive, effective and collective PPI across all stages of involvement. We hope this work will stimulate further action in this area. In particular, we would welcome the evaluation of these values involving diverse PPI groups.
ObjectiveTo systematically review the available evidence on paediatric early warning systems (PEWS) for use in acute paediatric healthcare settings for the detection of, and timely response to, ...clinical deterioration in children.MethodThe electronic databases PubMed, MEDLINE, CINAHL, EMBASE and Cochrane were searched systematically from inception up to August 2016. Eligible studies had to refer to PEWS, inclusive of rapid response systems and teams. Outcomes had to be specific to the identification of and/or response to clinical deterioration in children (including neonates) in paediatric hospital settings (including emergency departments). 2 review authors independently completed the screening and selection process, the quality appraisal of the retrieved evidence and data extraction; with a third reviewer resolving any discrepancies, as required. Results were narratively synthesised.ResultsFrom a total screening of 2742 papers, 90 papers, of varied designs, were identified as eligible for inclusion in the review. Findings revealed that PEWS are extensively used internationally in paediatric inpatient hospital settings. However, robust empirical evidence on which PEWS is most effective was limited. The studies examined did however highlight some evidence of positive directional trends in improving clinical and process-based outcomes for clinically deteriorating children. Favourable outcomes were also identified for enhanced multidisciplinary team work, communication and confidence in recognising, reporting and making decisions about child clinical deterioration.ConclusionsDespite many studies reporting on the complexity and multifaceted nature of PEWS, no evidence was sourced which examined PEWS as a complex healthcare intervention. Future research needs to investigate PEWS as a complex multifaceted sociotechnical system that is embedded in a wider safety culture influenced by many organisational and human factors. PEWS should be embraced as a part of a larger multifaceted safety framework that will develop and grow over time with strong governance and leadership, targeted training, ongoing support and continuous improvement.
Background
Virtual reality (VR) computer technology creates a simulated environment, perceived as comparable to the real world, with which users can actively interact. The effectiveness of VR ...distraction on acute pain intensity in children is uncertain.
Objectives
To assess the effectiveness and adverse effects of virtual reality (VR) distraction interventions for children (0 to 18 years) with acute pain in any healthcare setting.
Search methods
We searched CENTRAL, MEDLINE, Embase, CINAHL, PsycINFO and four trial registries to October 2019. We also searched reference lists of eligible studies, handsearched relevant journals and contacted study authors.
Selection criteria
Randomised controlled trials (RCTs), including cross‐over and cluster‐RCTs, comparing VR distraction to no distraction, non‐VR distraction or other VR distraction.
Data collection and analysis
We used standard Cochrane methodological processes. Two reviewers assessed risk of bias and extracted data independently. The primary outcome was acute pain intensity (during procedure, and up to one hour post‐procedure). Secondary outcomes were adverse effects, child satisfaction with VR, pain‐related distress, parent anxiety, rescue analgesia and cost. We used GRADE and created 'Summary of findings' tables.
Main results
We included 17 RCTs (1008 participants aged four to 18 years) undergoing various procedures in healthcare settings. We did not pool data because the heterogeneity in population (i.e. diverse ages and developmental stages of children and their different perceptions and reactions to pain) and variations in procedural conditions (e.g. phlebotomy, burn wound dressings, physical therapy sessions), and consequent level of pain experienced, made statistical pooling of data impossible. We narratively describe results.
We judged most studies to be at unclear risk of selection bias, high risk of performance and detection bias, and high risk of bias for small sample sizes. Across all comparisons and outcomes, we downgraded the certainty of evidence to low or very low due to serious study limitations and serious or very serious indirectness. We also downgraded some of the evidence for very serious imprecision.
1: VR distraction versus no distraction
Acute pain intensity: during procedure
Self‐report: one study (42 participants) found no beneficial effect of non‐immersive VR (very low‐certainty evidence).
Observer‐report: no data.
Behavioural measurements (observer‐report): two studies, 62 participants; low‐certainty evidence. One study (n = 42) found no beneficial effect of non‐immersive VR. One study (n = 20) found a beneficial effect favouring immersive VR.
Acute pain intensity: post‐procedure
Self‐report: 10 studies, 461 participants; very low‐certainty evidence. Four studies (n = 95) found no beneficial effect of immersive and semi‐immersive or non‐immersive VR. Five studies (n = 357) found a beneficial effect favouring immersive VR. Another study (n = 9) reported less pain in the VR group.
Observer‐report: two studies (216 participants; low‐certainty evidence) found a beneficial effect of immersive VR, as reported by primary caregiver/parents or nurses. One study (n = 80) found a beneficial effect of immersive VR, as reported by researchers.
Behavioural measurements (observer‐report): one study (42 participants) found no beneficial effect of non‐immersive VR (very low‐certainty evidence).
Adverse effects: five studies, 154 participants; very low‐certainty evidence. Three studies (n = 53) reported no adverse effects. Two studies (n = 101) reported mild adverse effects (e.g. nausea) in the VR group.
2: VR distraction versus other non‐VR distraction
Acute pain intensity: during procedure
Self‐report, observer‐report and behavioural measurements (observer‐report): two studies, 106 participants:
Self‐report: one study (n = 65) found a beneficial effect favouring immersive VR and one (n = 41) found no evidence of a difference in mean pain change scores (very low‐certainty evidence).
Observer‐report: one study (n = 65) found a beneficial effect favouring immersive VR and one (n = 41) found no evidence of a difference in mean pain change scores (low‐certainty evidence).
Behavioural measurements (observer‐report): one study (n = 65) found a beneficial effect favouring immersive VR and one (n = 41) reported a difference in mean pain change scores with fewer pain behaviours in VR group (low‐certainty evidence).
Acute pain intensity: post‐procedure
Self‐report: eight studies, 575 participants; very low‐certainty evidence. Two studies (n = 146) found a beneficial effect favouring immersive VR. Two studies (n = 252) reported a between‐group difference favouring immersive VR. One study (n = 59) found no beneficial effect of immersive VR versus television and Child Life non‐VR distraction. One study (n = 18) found no beneficial effect of semi‐immersive VR. Two studies (n = 100) reported no between‐group difference.
Observer‐report: three studies, 187 participants; low‐certainty evidence. One study (n = 81) found a beneficial effect favouring immersive VR for parent, nurse and researcher reports. One study (n = 65) found a beneficial effect favouring immersive VR for caregiver reports. Another study (n = 41) reported no evidence of a difference in mean pain change scores.
Behavioural measurements (observer‐report): two studies, 106 participants; low‐certainty evidence. One study (n = 65) found a beneficial effect favouring immersive VR. Another study (n = 41) reported no evidence of a difference in mean pain change scores.
Adverse effects: six studies, 429 participants; very low‐certainty evidence. Three studies (n = 229) found no evidence of a difference between groups. Two studies (n = 141) reported no adverse effects in VR group. One study (n = 59) reported no beneficial effect in reducing estimated cyber‐sickness before and after VR immersion.
3: VR distraction versus other VR distraction
We did not identify any studies for this comparison.
Authors' conclusions
We found low‐certainty and very low‐certainty evidence of the effectiveness of VR distraction compared to no distraction or other non‐VR distraction in reducing acute pain intensity in children in any healthcare setting. This level of uncertainty makes it difficult to interpret the benefits or lack of benefits of VR distraction for acute pain in children. Most of the review primary outcomes were assessed by only two or three small studies. We found limited data for adverse effects and other secondary outcomes. Future well‐designed, large, high‐quality trials may have an important impact on our confidence in the results.
Objective
Research has indicated that social support may play a protective role in the face of stress and help children and adolescents cope with the demands and challenges they face on a daily basis ...during their cancer journey. However, social support tends to reduce over time as survivors overcome their illness despite its ongoing importance even years after treatment has finished. The current review aimed to systematically examine existing evidence on social support in child and adolescent cancer survivors.
Methods
Five databases (PsychINFO, CINAHL, EMBASE, PubMed and Web of Science) were searched systematically to identify quantitative studies which explored social support from the perspective of child and adolescent cancer survivors aged 18 years or younger.
Results
A total of 10 studies met the eligibility criteria for inclusion. Findings from the review indicate that family and friends, particularly parents, are important sources of social support for survivors. Social support was positively related to posttraumatic growth, school re‐entry and physical activity, and negatively related to psychological stress, depression, anxiety and stress. Furthermore, findings relating to gender, age and group differences were mixed. A number of methodological concerns were identified in the reviewed studies including small sample sizes, as well as a lack of consistency in the measurement of social support.
Conclusions
Future studies of social support for child and adolescent cancer survivors need to address these shortcomings to help inform care and support interventions promoting social support in survivors.
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BFBNIB, DOBA, FZAB, GIS, IJS, IZUM, KILJ, NLZOH, NUK, OILJ, PILJ, PNG, SAZU, SBCE, SBMB, UILJ, UKNU, UL, UM, UPUK
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