Relationship between parent-adolescent communication and parent involvement in adolescent Type 1 diabetes management, parent/family wellbeing and glycaemic control.

OBJECTIVES: This study investigated the relationship between parent-reported degree of openness and extent of problems in parent-adolescent communication and parent involvement in adolescent Type 1 diabetes management, parent and family wellbeing and adolescent glycaemic control. METHODS: A cross-sectional quantitative survey was conducted. Parents completed measures of parent-adolescent communication, parent monitoring of diabetes care, diabetes family responsibility, parent knowledge of diabetes care, parent activation, parent diabetes distress, and diabetes family conflict. RESULTS: In total, 146 parents/guardians (121 mothers, mean age 46.56 years, SD 5.18) of adolescents aged 11-17 years (mean age 13.9 years, SD 1.81) with Type 1 diabetes completed the survey. Open parent-adolescent communication was significantly correlated to adolescents' voluntarily disclosing diabetes-specific information to their parents more frequently, increased parental knowledge of their adolescent's diabetes care completion, parents feeling more capable and willing to take action in relation to their adolescent's diabetes health, lower levels of diabetes-related parental distress, less diabetes-specific family conflict, and optimal glycaemic control. DISCUSSION: Parent-adolescent communication has an important role to play in Type 1 diabetes healthcare management and psychosocial wellbeing during adolescence. Optimising open parent-adolescent communication represents a potentially useful target for interventional research and should be considered by healthcare professionals during healthcare encounters.

Social support and childhood cancer survivors: A systematic review (2006-2022).

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.

Adolescent perspectives on negotiating self-management responsibilities for type 1 diabetes with their parents.

OBJECTIVE: The overall purpose of this study was to explore adolescent perspectives on communicating about self-management of type 1 diabetes (T1D) and negotiating responsibilities for self-management with parents. METHODS: Semi-structured interviews were conducted with 28 adolescents aged 11-17 years living with T1D. Interviews were audio-recorded, transcribed verbatim and thematically analysed. RESULTS: Two themes and five subthemes were identified. The first theme, 'changing levels of involvement in self-management' describes the division of responsibility for self-management within the family and adolescents collaborating and sharing responsibilities with parents for self-management. The second theme, 'talking about self-management with parents' describes changes in patterns of parent-adolescent communication about T1D over time, adolescents' seeking parental feedback and advice and the factors that contribute to the promotion of self-management communication between adolescents and parents. CONCLUSION: This study identified that how adolescents perceive communication with their parents contributes to negotiation of responsibilities for self-management during adolescence. The findings provide a nuanced understanding of adolescent perspectives on communication with parents about T1D self-management and how parent-adolescent communication can be framed in ways that promote positive adolescent engagement with T1D self-management. PRACTICE IMPLICATIONS: Targeting parent-adolescent communication strategies may result in more optimal sharing of responsibilities and improved self-management.

Nurses' attitudes towards family importance in nursing care across Europe.

AIMS AND OBJECTIVE: To explore differences in nurses' attitudes regarding the importance of family in nursing care and factors associated with nurses' attitudes across 11 European countries. BACKGROUND: Family involvement in healthcare has received attention in many European healthcare systems. Nurses have a unique opportunity to promote family involvement in healthcare; however, their attitudes and beliefs may facilitate or impede this practice. DESIGN: A cross-sectional survey across European countries. METHOD: A broad convenience sample of 8112 nurses across 11 European countries was recruited from October 2017 to December 2019. Data were collected using the Families' Importance in Nursing Care-Nurses' Attitudes (FINC-NA) questionnaire. We used the STROBE checklist to report the results. RESULTS: There were significant differences in nurses' attitudes about families' importance in nursing care across Europe. Country was the factor with the strongest association with the total scores of the FINC-NA. Older age, higher level of education, increased years since graduation, having a strategy for the care of families in the workplace, and having experience of illness within one's own family were associated with a higher total FINC-NA score. Being male and working in a hospital or other clinical settings were associated with a lower total FINC-NA score. CONCLUSION: Nurses' attitudes regarding the importance of family in nursing care vary across 11 European countries. This study highlights multiple factors associated with nurses' attitudes. Further research is necessary to gain a deeper understanding of the reasons for nurses' different attitudes and to develop a strong theoretical framework across Europe to support family involvement in patient care. The inclusion of family healthcare programs in the baccalaureate curriculum may improve nurses' attitudes. RELEVANCE FOR CLINICAL PRACTICE: In clinical practice, the focus should be on identifying influencing factors on nurses' attitudes to enhance families' importance in nursing care across Europe.

Parents' perspectives of factors affecting parent-adolescent communication about type 1 diabetes and negotiation of self-management responsibilities.

Adolescence is an important time in which young people take on type 1 diabetes (T1D) self-management responsibility. Parents are key facilitators of this process. Little is known about parents' experiences of communicating with their children about T1D during adolescence. Semi-structured interviews were conducted with 32 parents (24 mothers and 8 fathers) of adolescents (11-17 years) living with T1D to explore how parents communicate about T1D and self-management with their adolescent children. Parents were recruited through two national child and adolescent diabetes and endocrine clinics and online advertisement through a national diabetes advocacy organisation. Interviews were transcribed verbatim and thematically analysed. Six themes were identified: parent factors, quality of the parent-adolescent relationship, communication strategies, adolescent factors, communication triggers and family/system factors. Understanding factors that impact communication about self-management between parents and adolescents will enable healthcare professionals to provide support and targeted interventions as parent and adolescent roles change over time.

A Rapid Realist Review of Quality Care Process Metrics Implementation in Nursing and Midwifery Practice.

Quality measurement initiatives promote quality improvement in healthcare but can be challenging to implement effectively. This paper presents a Rapid Realist Review (RRR) of published literature on Quality Care-Process Metrics (QCP-M) implementation in nursing and midwifery practice. An RRR informed by RAMESES II standards was conducted as an efficient means to synthesize evidence using an expert panel. The review involved research question development, quality appraisal, data extraction, and evidence synthesis. Six program theories summarised below identify the key characteristics that promote positive outcomes in QCP-M implementation. Program Theory 1: Focuses on the evidence base and accessibility of the QCP-M and their ease of use by nurses and midwives working in busy and complex care environments. Program Theory 2: Examines the influence of external factors on QCP-M implementation. Program Theory 3: Relates to existing cultures and systems within clinical sites. Program Theory 4: Relates to nurses' and midwives' knowledge and beliefs. Program Theory 5: Builds on the staff theme of Programme Theory four, extending the culture of organizational learning, and highlights the meaningful engagement of nurses and midwives in the implementation process as a key characteristic of success. Program Theory 6: Relates to patient needs. The results provide nursing and midwifery policymakers and professionals with evidence-based program theory that can be translated into action-orientated strategies to help guide successful QCP-M implementation.

Democratizing epilepsy care: Utility and usability of an electronic patient portal.

OBJECTIVES: Electronic patient portals (ePortals) can facilitate greater healthcare democratization by providing patients and/or their authorized care partners with secure access to their medical records when and where needed. Such democratization can promote effective healthcare provider-patient partnerships, shared decision-making, and greater patient engagement in managing their health condition. This study examined the usefulness of providing individualized services and care in epilepsy (PiSCES), an epilepsy ePortal, as an enabler of more democratized epilepsy care. METHODS: Seventy-two individuals with epilepsy and 18 care partners were invited to report on their experience of interacting via PiSCES with clinical documents (epilepsy care summary record; epilepsy clinic letters) authored about them by healthcare providers. The OpenNotes reporting tool was adapted to capture participant experience. RESULTS: Twenty-five percent of invited patients and 44% of invited care partners reported on interacting with their epilepsy care summary; 14% of patients and 67% of care partners invited reported on their epilepsy clinic letters. Participant testimonials illustrate the value of PiSCES in: promoting autonomy, aiding memory, developing the knowledgeable patient, and enhancing healthcare partnerships. Ninety-six percent and 100% of respondents, respectively, reported understanding their epilepsy care summary and epilepsy clinic letter; 77% said the summary described their epilepsy history to date; 96% indicated that the letter provided an accurate description of their clinical encounter; 92% and 96%, respectively, valued access to their summary record and clinic letters; 77% of summary record and 73% clinic letter respondents reported learning something about their epilepsy or the healthcare service via PiSCES. Illustrating their potential patient and care partner safety role, 42% respondents identified inaccuracies in their clinical documents which were subsequently resolved by a clinician. SIGNIFICANCE: In the post-digital world highly customized on-demand products and services have come to be expected. Similarly, in epilepsy care, technologies such as PiSCES can enable more personalized, transparent, and engaging services.

Exploring the relationship between parent-child communication about epilepsy and psychosocial well-being.

This study examined the relationship between parent-child communication and psychosocial well-being of 47 children living with epilepsy and 72 parents of children living with epilepsy. Open communication was associated with positive illness attitude, positive self-perception and greater health-related quality of life for children living with epilepsy; positive response to illness for parents; and more perceived social support and less need for epilepsy-related support for children living with epilepsy and parents. By contrast, closed communication was associated with poorer psychosocial well-being in children living with epilepsy and parents. Healthcare professionals should provide guidance for families living with childhood epilepsy on the importance of open communication in promoting greater psychosocial well-being.

Coproducing health and well-being in partnership with patients, families, and healthcare providers: A qualitative study exploring the role of an epilepsy patient portal.

BACKGROUND: Coproduced epilepsy care sees people with epilepsy (PwE), their care-proxies, and healthcare providers (HCPs), working together as partners to build strong relationships, improve communication, trust, and share decision-making. Coproduction underpins good quality patient- and family-centered care (PFCC) that is responsive to individual patient needs, preferences, and values. By facilitating information sharing and exchange between partners, electronic patient portals (ePortal) can enable coproduction. This paper explores what HCPs, PwE, and their care-proxies value from their user experience of PiSCES, the Irish epilepsy ePortal. METHODS: A purposeful sample of actors involved in the receipt and delivery of epilepsy care and services were recruited via adult epilepsy centers at St James's and Beaumont Hospitals in Dublin. Interactive codesign sessions, surveys, and focus groups were used to elicit perspectives from PwE, care-proxies, and HCPs to understand their perception of how PiSCES could enhance or inhibit the epilepsy care process. RESULTS: Results illustrate that participants welcome the role PiSCES can play in: empowering PwE/care-proxies, strengthening confidence in the healthcare system; aiding memory; advancing health literacy, motivating PwE to understand their condition better; acting as a passport of care between different clinical settings; and creating a foundation for stronger coproduction partnerships. PiSCES was generally embraced; however, some HCPs expressed plausible concerns about how clinical implementation might impact their work practices. CONCLUSION: "Nothing about me without me" is a core value of the PiSCES initiative, recognizing that people need to be included in the planning of their own treatment and care. Our data show that PwE, their care-proxies, and HCPs value PiSCES potential, particularly in bolstering healthcare partnerships that foster inclusion, confidence, and trust.

Self-management in children and young people with epilepsy: A systematic review and qualitative meta-synthesis.

The aim of this review was to conduct a meta-synthesis of qualitative studies exploring the self-management experiences, attitudes and perspectives of children and young people (CYP) living with epilepsy. Five databases were systematically searched up to September 2019. Fourteen papers were included. One analytical theme: self-management strategies was generated informed by four descriptive themes; concealment; medicine adherence; self-monitoring of activities; and seeking social support. The synthesis identified that while CYP with epilepsy engage in specific self-management strategies, there is limited evidence in understanding self-management and the processes underlying the use of it. Future research examining self-management in childhood is required.

Virtual reality distraction for acute pain in children.

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.

Minding the gap: identifying values to enable public and patient involvement at the pre-commencement stage of research projects.

BACKGROUND: 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. METHODS: 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. RESULTS: 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. CONCLUSIONS: 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.

The development of an epilepsy electronic patient portal: Facilitating both patient empowerment and remote clinician-patient interaction in a post-COVID-19 world.

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.

Quality care process metrics (QCP-Ms) in nursing and midwifery care processes: a rapid realist review (RRR) protocol.

Background: In 2018, the Office of the Nursing and Midwifery Services Director (ONMSD) completed phase one of work which culminated in the development and launch of seven research reports with defined suites of quality care process metrics (QC-Ms) and respective indicators for the practice areas - acute care, midwifery, children's, public health nursing, older persons, mental health and intellectual disability nursing in Ireland. This paper presents a rapid realist review protocol that will systematically review the literature that examines QC-M in practice; what worked, or did not work for whom, in what contexts, to what extent, how and why? Methods : The review will explore if there are benefits of using the QC-Ms and what are the contexts in which these mechanisms are triggered. The essence of this rapid realist review is to ascertain how a change in context generates a particular mechanism that produces specific outcomes. A number of steps will occur including locating existing theories on implementation of quality care metrics, searching the evidence, selecting relevant documents, data extraction, validation of findings, synthesising and refining programme theory. This strategy may help to describe potential consequences resulting from changes in context and their interactions with mechanisms. Initial theories will be refined throughout the process by the local reference panel, comprised of eight key intervention stakeholders, knowledge users such as healthcare professionals and an expert panel. Ethical approval is not required for this rapid realist review. Conclusion: It is anticipated that the final programme theory will help to explain how QC-Ms work in practice; for whom, why and in what circumstances. Findings of this review could help to give insights into realism as a framework and how nursing and midwifery QC-Ms have been implemented previously.

Igniting intersectoral collaboration in chronic disease management: a participatory action research study on epilepsy care in Ireland.

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.

Are patients ready for integrated person-centered care? A qualitative study of people with epilepsy in Ireland.

The National Clinical Programme for Epilepsy (NCPE) in Ireland aims to deliver a holistic model of integrated person-centered care (PCC) that addresses the full spectrum of biomedical and psychosocial needs of people with epilepsy (PwE). However, like all strategic plans, the model encompasses an inherent set of assumptions about the readiness of the environment to implement and sustain the actions required to realize its goals. In this study, through the lens of PwE, the Irish epilepsy care setting was explored to understand its capacity to adopt a new paradigm of integrated PCC. Focus groups and semi-structured one-to-one interviews were employed to capture the qualitative experiences of a sample of Irish PwE (n = 27) in the context of the care that they receive. Participants were from different regions of the country and were aged between 18 and 55 years with 1 to 42 years since diagnosis (YSD). Highlighting a gap between policy intent and action on the ground, findings suggest that patient readiness to adopt a new model of care cannot be assumed. Expectations, preferences, behaviors, and values of PwE may sustain the more traditional constructions of healthcare delivery rather than the integrated PCC goals of reform. These culturally constituted perceptions illustrate that PwE do not instinctively appreciate the goals of healthcare reform nor the different behavior expected from them within a reformed healthcare system. Recalibrating deep-rooted patient views is necessary to accomplish the aspirations of integrated PCC. Patient engagement emphasizing the meaningful role that they can play in shaping their healthcare services is vital.

Children and young people's experiences and perceptions of self-management of type 1 diabetes: A qualitative meta-synthesis.

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.

The rhetoric and reality of integrated patient-centered care for healthcare providers: An ethnographic exploration of epilepsy care in Ireland.

In line with healthcare reform across the world, the National Clinical Programme for Epilepsy (NCPE) in Ireland describes a model that aims to achieve holistic integrated person (patient)-centered care (PCC). While generally welcomed by stakeholders, the steps required to realize the NCPE ambition and the preparedness of those involved to make the journey are not clear. This study explored the perceptions of healthcare providers in the Irish epilepsy care ecosystem to understand their level of readiness to realize the benefits of an integrated PCC model. Ethnographic fieldwork including observations of different clinical settings across three regions in Ireland and one-to-one interviews with consultant epileptologists (n = 3), epilepsy specialist nurses (n = 5), general practitioners (n = 4), and senior healthcare managers (n = 3) were conducted. While there is a person-centered ambiance and a disposition toward advancing integrated PCC, there are limits to the readiness of the epilepsy care environment to fully meet the aspirations of healthcare reform. These are the following: underdeveloped healthcare partnerships;, poor care coordination;, unintended consequences of innovation;, and tension between pace and productivity. In the journey from policy to practice, the following multiple tensions collide: policy aims to improve services for all patients while simultaneously individualizing care; demands for productivity limit the time and space required to engage in incremental and iterative improvement initiatives. Understanding these tensions is an essential first step on the pathway to integrated PCC implementation.

Clarifying the mechanisms and resources that enable the reciprocal involvement of seldom heard groups in health and social care research: A collaborative rapid realist review process.

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.