scholarly journals Programmes to support transitions in care for children and youth with complex care needs and their families: a scoping review protocol

BMJ Open ◽  
2020 ◽  
Vol 10 (6) ◽  
pp. e033978
Author(s):  
Shelley Doucet ◽  
Janet A Curran ◽  
Sydney Breneol ◽  
Alison Luke ◽  
Emilie Dionne ◽  
...  
Keyword(s):  
Scoping Review ◽  
Transitional Care ◽  
Research Policy ◽  
Children And Youth ◽  
Advisory Council ◽  
Complex Care ◽  
Care Needs ◽  
Transitions In Care ◽  
Scoping Reviews ◽  
Complex Care Needs

IntroductionChildren and youth with complex care needs (CCNs) and their families experience many care transitions over their lifespan and are consequently vulnerable to the discontinuity or gaps in care that can occur during these transitions. Transitional care programmes, broadly defined as one or more intervention(s) or service(s) that aim to improve continuity of care, are increasingly being developed to address transitions in care for children and youth with CCNs. However, this literature has not yet been systematically examined at a comprehensive level. The purpose of this scoping review is to map the range of programmes that support transitions in care for children and youth with CCNs and their families during two phases of their lifespan: (1) up to the age of 19 years (not including their transition to adult healthcare) and (2) when transitioning from paediatric to adult healthcare.Methods and analysisThe Joanna Briggs Institute methodology for scoping reviews (ScR) will be used for the proposed scoping review. ScR are a type of knowledge synthesis that are useful for addressing exploratory research questions that aim to map key concepts and types of evidence on a topic and can be used to organise what is known about the phenomena. A preliminary search of PubMed was conducted in December 2018.Ethics and disseminationEthical approval is not required where this study is a review of the published and publicly reported literature. The research team’s advisory council will develop a research dissemination strategy with goals, target audiences, expertise/leadership, resources and deadlines to maximise project outputs. The end-of-grant activities will be used to raise awareness, promote action and inform future research, policy and practice on this topic.

Exploring the use of a Facebook-based support group for caregivers of children and youth with complex care needs (Preprint)

2021 ◽  
Author(s):  
Katherine Kelly ◽  
Shelley Doucet ◽  
Alison Luke ◽  
Rima Azar ◽  
William Montelpare
Keyword(s):  
Support Groups ◽  
Support Group ◽  
Online Survey ◽  
Children And Youth ◽  
Advisory Council ◽  
Support Needs ◽  
Complex Care ◽  
Care Needs ◽  
Group Members ◽  
Complex Care Needs

BACKGROUND Caregivers of children and youth with complex care needs (CCN) require substantial support to ensure the well-being of their families. Online peer-to-peer (P2P) support groups present an opportunity for caregivers to seek and provide timely informational and emotional support. Despite the widespread use of social media for health-related support across diverse patient and caregiver populations, it is unclear how caregivers of CCN use and potentially benefit from these groups. OBJECTIVE The aim of this study was to explore the use of an online P2P support group for caregivers of children and youth with CCN and investigate factors related to its sustained use by members. METHODS The study sample consisted of individuals who joined a closed Facebook group and analysis of content published to the group. In Phase 1, a Facebook group was developed in consultation with a patient and family advisory council and members were recruited to the group. Phase 2 of this research consisted of an observation period during which posts and related interactions (i.e., likes, loves, and comments) by members were collected. In Phase 3, an online survey was distributed, and semi-structured interviews were conducted with a sub-sample of group members; survey and interview data were analyzed using thematic analysis. RESULTS A total of 108 caregivers joined the Facebook group between October 2020 and March 2021. There were 93 posts with 405 comments and 542 associated interactions (448 likes and 94 loves); 37 of these posts were made by group members and 56 by moderators. An online survey was completed by a sub-sample of 39 members and 14 members participated in interviews. Content analyses of posts by members revealed inquiry (46%), informational (40%), and emotional posts (11%) to be most common. Emotional posts received the greatest number of interactions (x̅ =24.5). Five themes emerged from interviews related to the use of the group and mediating factors of interactions between group members: 1) resource for information; 2) altruistic contribution; 3) varying level of engagement; 4) growing activity in the group; and 5) moderators as contributing members. CONCLUSIONS These findings demonstrate that caregivers of children and youth with CCN seek geographic-specific P2P support groups to meet informational and social support needs. This study contributes to the knowledge of how caregivers use Facebook groups to meet their support needs through moderate and passive engagement.

scholarly journals Understanding burnout among parents of children with complex care needs: A scoping review informed by a stakeholder consultation

2021 ◽  
Author(s):  
Nathalie Patty ◽  
Karen van Meeteren ◽  
Agnes Willemen ◽  
Carlo Schuengel
Keyword(s):  
Scoping Review ◽  
Grey Literature ◽  
Complex Care ◽  
Risk And Resilience ◽  
Care Needs ◽  
Stakeholder Consultation ◽  
Scoping Reviews ◽  
Comprehensive Search ◽  
Complex Care Needs ◽  
The Impact

Background: The concept of parental burnout has been proposed to be helpful for describing and understanding the impact of parenting children with complex care needs (CCN). The objective of this scoping review was to investigate the aims, methods, and results of research on burnout among parents of children with CCN, and to inform the interpretation as well as implications for research and practice through a stakeholder consultation.Methods: The scoping review was guided by the JBI Reviewers’ Manual for scoping reviews. Primary studies on burnout among parents of children with CCN were identified through a comprehensive search of peer reviewed and grey literature. Metadata and findings were extracted and compiled for further synthesis and interpretation, guided by a stakeholder consultation, involving parents of children with CCN (n = 6), healthcare professionals (n = 3), and researchers (n = 3). The stakeholder consultation was structured according to a Delphi consultation method. Results: A total of 57 articles were eligible for inclusion. Prevalence of burnout among parents of children with CCN varied between 20 and 77%. Parents of children with CCN reported on average higher burnout scores than parents of children without CCN. While all studies focused on parents with children with CCN, very few studies specifically focused on burnout within the context of parenting a child with CCN. Stakeholders endorsed the importance of studies into the multifactorial determination of burnout in the context of having children with CCN. Conclusion:The concept of parental burnout highlights the extremes of stress and burden experienced by parents of children with CCN. By focusing more on contextualized definitions of parental burnout, research may unravel the complex interplay between personal and contextual factors pertaining to risk and resilience.

scholarly journals A Transitional Care Model for Veterans With Complex Needs During COVID: The Behavioral Recovery Outreach (BRO) Team

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 46-46
Author(s):  
Kathleen Matthews ◽  
Latrice Vinson
Keyword(s):  
Transitional Care ◽  
Lessons Learned ◽  
Future Research ◽  
Complex Care ◽  
Veterans Health ◽  
Behavioral Recovery ◽  
Care Needs ◽  
Program Outcomes ◽  
Complex Care Needs ◽  
Team Model

Abstract The Veterans Health Administration’s Care for Patients with Complex Problems (CP)2 Program developed a national infrastructure to disseminate promising practice models to improve care for Veterans with complex medical, mental health, and/or neurocognitive conditions, who may also have behaviors disruptive to care. A strategic priority is improving safe and effective transitions to community care for Veterans with complex care needs, many of whom have historically been limited to VA settings as a result of behavioral concerns. The Behavioral Recovery Outreach (BRO) Team was the first model identified for national dissemination and evaluation at partner sites. Developed at VA Central Iowa, BRO is an interdisciplinary team model that identifies Veterans in long-term VA care settings with complex care needs to engage in individualized behavioral programing to manage/stabilize behaviors and safely transition them to more appropriate and less costly community settings. This symposium will describe the BRO team model, highlight the facilitators and barriers to nationally disseminating the BRO model with VA partner facilities, discuss adaptations in continuing community transitions following the COVID-19 pandemic, and describe program outcomes. The first speaker will discuss development of the BRO model and outcomes of a regional dissemination. The second speaker will present results from the program evaluation of the national dissemination. The final speaker will describe BRO Team expansion and lessons learned from the perspective of a VA partner facility. The (CP)2 Program Director will integrate findings and highlight implications for scaling and evaluating promising models for national dissemination for policy, practice, and future research.

scholarly journals IMPROVING TRANSITIONS IN CARE FOR CHILDREN WITH COMPLEX CARE NEEDS IN NOVA SCOTIA

2018 ◽  
Vol 23 (suppl_1) ◽  
pp. e30-e30
Author(s):  
Janet Curran ◽  
Jocelyn Vine ◽  
Sydney Breneol
Keyword(s):  
Nova Scotia ◽  
Health Care Providers ◽  
Policy Recommendations ◽  
Complex Care ◽  
Care Providers ◽  
Care Needs ◽  
Children With Medical Complexity ◽  
Transitions In Care ◽  
Nurse Coordinator ◽  
Complex Care Needs

Abstract BACKGROUND Children with complex care needs are a small yet resource intensive population in Canada. At present, there is wide variation in the way in which this population is characterized in the clinical and research literature. Transitions from hospital to home for these children can be complicated by variation in available services and resources in their home community; complex technological logistics; and a sharp disjuncture between discharge instructions provided to families and implementation in their home communities. OBJECTIVES Develop policy recommendations for inclusion in a Nova Scotia strategy to support transitions in care for these children with medical complexity. DESIGN/METHODS We used a mixed method design. During phase 1 we developed six cases representing children with different levels of complexity. Cases were informed by parent and provider interviews at 4 time points, chart audits and validated measures of caregiver distress. In phase 2, we conducted key stakeholder interviews across Nova Scotia to identify barriers and facilitators to successful transitions in care. A multi-sector consensus meeting was held during phase 3 to discuss study findings and refine key recommendations for inclusion in a Nova Scotia strategy. RESULTS Six cases included children aged 15 days to 9 years old who were followed by as many as seven services and lived 50–300 km from IWK Health Centre. Key stakeholder interviews were conducted with 4 nurses, 4 physicians, and 1 administrator from 5 communities across Nova Scotia. A range of inter-institutional communication challenges and limited educational resources were identified as a key barrier. Participants identified the need for a nurse-coordinator role to act as a resource for both families and health providers in the community. A half-day consensus meeting 20 stakeholders from different health and government sectors was held. Proposed policy recommendations included: (1) consistent, timely, and discharge planning, (2) a comprehensive repository of resources for health care providers and families, (3) educational outreach strategy to build capacity for providers and families, (4) a nurse-coordinator role in each health zone to act a liaison and resource for health care providers and families, (5) work with existing provincial programs and services to develop policies and tools that are unique to a paediatric population, (6) adopt an established definitional framework for Children with Medical Complexity. CONCLUSION Our collaborative patient-centred approach to understanding how children with complex care needs currently navigate transitions in care in Nova Scotia provided a foundation for developing recommendations for a provincial strategy.

Experiences, motivations, and perceived impact of participation in a Facebook-based support group for caregivers of children and youth with complex care needs (Preprint)

2021 ◽  
Author(s):  
Katherine Kelly ◽  
Shelley Doucet ◽  
Alison Luke ◽  
Rima Azar ◽  
William Montelpare
Keyword(s):  
Support Groups ◽  
Support Group ◽  
Sense Of Community ◽  
Online Survey ◽  
Children And Youth ◽  
Complex Care ◽  
Care Needs ◽  
Community Belonging ◽  
Perceived Impact ◽  
Complex Care Needs

BACKGROUND Caregivers of children and youth with complex care needs (CCN) often require considerable support to ensure the well-being of their families. Social media presents an opportunity to better support caregivers through computer-mediated communication for social support. Peer-to-peer (P2P) support groups are one way that caregivers are accessing needed support; however, the impact that participation in these groups has on caregivers of children and youth with CCN is not known. OBJECTIVE This study aimed to: (1) explore the experiences of caregivers of children and youth with CCN who use a Facebook-based P2P support group to communicate; (2) understand their motivations to use the group; and (3) investigate its perceived impact on knowledge of programs and services and sense of community belonging in caregivers. METHODS A qualitative descriptive design was used to explore the experiences and perceived impact of a Facebook-based P2P support group for caregivers of children and youth with CCN in NB. The group was launched in October 2020 and resulted in 108 caregivers joining the group. An online survey was distributed, and semi-structured interviews were conducted with a sub-sample of members. Thematic analysis was used to identify, and report patterns related to caregiver experiences and perceived impacts of participation. RESULTS A sub-sample of members in the Facebook group completed the online survey (n=39) and interviews (n=14). Five themes emerged from interviews: (1) Safe Space; (2) Informational Support and Direction; (3) Virtually Connect with Peers; (4) Impact on Knowledge of Programs and Services; and (5) Degree of Community Belonging. Participants reported joining the group to obtain geographic-specific information support and to connect with peers. Many participants reported an improvement in knowledge of programs and services and felt connected to the community; however, group infancy and diversity among the caregiver population were cited as barriers to community belonging. CONCLUSIONS Online P2P support groups hold significant promise for supporting caregivers in ways that traditional methods have not been able to achieve. Findings from this study suggest that involvement in online, geographic-specific P2P support groups can influence perceived knowledge of services and resources and sense of community belonging among caregivers of children and youth with CCN. This work further provides insight into the experiences and motivations of caregivers of children and youth with CCN who participate in a private social media environment.

Respite care for children and youth with complex care needs and their families

2019 ◽  
Vol 17 (7) ◽  
pp. 1297-1304
Author(s):  
Sydney Breneol ◽  
Sarah T. King ◽  
Shauna Best ◽  
Shelley McKibbon ◽  
Janet A. Curran
Keyword(s):  
Respite Care ◽  
Children And Youth ◽  
Complex Care ◽  
Care Needs ◽  
Complex Care Needs
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