ABSTRACT
Objective: The objective of this scoping review is to identify and characterize interventions, programs or models used to deliver respite care services to children and youth with complex care needs and their families.
Introduction: Many children with complex chronic conditions require multifaceted home management plans to address their medical, social and emotional needs. The provision of this care often falls on the parents or primary guardians. Respite care is one strategy to provide families with a break from the demands of caring for a child with complex care needs; however, families commonly face barriers to obtaining respite care services.
Inclusion criteria: This scoping review will consider papers that include children and youth (0-25 years of age, in any location, with complex care needs, medical complexity or complex chronic conditions) and their families. Any interventions, programs or models aimed at delivering respite care services to this population will be included. Studies focusing on support provided at the end of life will be excluded. Only studies published in English will be included. No date limits will be set.
Methods: A search will be conducted in five databases, as well as multiple sources of unpublished literature. The text words contained in the titles and abstracts of relevant articles and index terms will be used to develop a full search strategy. All potentially relevant papers will be retrieved in full. A pre-defined data extraction tool developed by the reviewers will be used, and extracted data will be presented in tabular form accompanied by a narrative summary.
Article Content
Introduction
Challenges associated with the provision of care and the management of children with complex care needs have been gaining attention in both research and clinical initiatives over the past decades.1-4 Children with complex and special healthcare needs are often defined as those "who have or are at increased risk of chronic physical, developmental, behavioral, or emotional conditions and require health care and related services of a type or amount beyond that required by children generally".5(p.138) Since the 1960s, there has been an estimated 400% increase in the number of children reported to have a chronic condition interfering with their activities of daily living.6 In recent years, evidence suggests that approximately 15% of children have a chronic condition impacting their health and daily life.7 Although a small percentage of the pediatric population, children with complex care needs account for a substantial portion of health system utilization and require comprehensive care coordination.8-14 Unfortunately, there appears to be a disjuncture between the current healthcare system and the needs of this vulnerable population.1
Nearly 90% of children with complex chronic conditions are discharged home from hospital and require multifaceted home management plans to address their medical, social and emotional care needs.15,16 Further, children with medical fragility are commonly being discharged home with complex medical interventions (e.g. ventilators, feeding tubes, intravenous infusions) requiring the oversight of highly-skilled medical and nursing care.17 Most often, the provision of these expert medical skills and care coordination activities falls on the parents or primary guardians, placing additional demands on the family.17-19 Many of these parents have reported increased rates of disrupted home life,20 financial burdens,21 stress,22 depression23,24 and poorer general health.24 Furthermore, mothers of children with long-term care needs have reported difficulty in leaving the house without meticulous pre-planning, leading to feelings of isolation.18
Respite care, also referred to as a "short break," is one strategy to provide families with a break from the demands of caring for a child with complex care needs, while also providing the opportunity for the child to have social interactions outside of the family unit.25-27 Respite care can take various forms, from a few hours to a few weeks, inside or outside the home. Families may use this time as an opportunity to attend to numerous unique and personal needs.25 In addition to scheduled care, respite care may also be required on an emergency basis during unforeseen situations, such as during times of caregiver illness. Identifying and securing respite care providers has been identified as one of the key components to transitioning children and youth with complex care needs from hospital to home.17 However, parents of children with complex care needs have reported difficulty in finding and accessing respite care services that fit their dynamic needs.25
Families of children and youth with complex healthcare needs have reported a number of barriers to obtaining respite care services, including accessing program information, meeting strict eligibility criteria, covering potential costs and attaining diverse and flexible options to meet their changing needs.25 Attaining respite care services as children become older may also pose difficulty due to program and funding age restrictions.28 Families that do find a respite care service may still endure a delay in access due to lengthy waiting lists.25 Furthermore, trust must also be developed between families and their respite providers to appropriately care for their child,25 mitigating an additional potential source of stress and anxiety for the family.
With the increasing number of children and youth with complex care needs, it is essential that we begin to address the respite care needs of this vulnerable population. To our knowledge, studies evaluating programs or interventions aimed at delivering respite care services for children with complex care needs and their families have not been systematically searched. A preliminary search of PROSPERO, MEDLINE, the Cochrane Database of Systematic Reviews and the JBI Database of Systematic Reviews and Implementation Reports was conducted, and no current or underway evidence syntheses on this topic were identified. However, the preliminary search revealed a number of primary articles relevant to this topic, highlighting the need for evidence synthesis in this area.26,29-31
One literature review exploring models of respite care services for families of children with disabilities was identified through a targeted Google search.32 However, this review did not follow a systematic approach, was not published in a peer-reviewed journal and lacked a detailed description of the population of interest.32 Given the limitations of the existing literature review and the urgent need to organize and map the evidence concerning respite care for the increasing population of children and youth with complex chronic conditions,1 a scoping review is warranted.
The results from this scoping review will be used to inform future research, program and policy initiatives aimed at providing meaningful respite care services to this vulnerable pediatric population and their families. Findings stemming from this review can provide critical information regarding potential individual and system-level barriers and enablers that researchers, practitioners and policy-makers may encounter when implementing a respite care intervention, model or program in their context. The objective of this scoping review is to identify and characterize interventions, programs or models used to deliver respite care services to children and youth with complex care needs and their families.
Review questions
This scoping review will address the following question: What interventions, programs or models have been used to deliver respite care services for children with complex care needs and their families? Subquestions addressed by this review will include: i) What are the characteristics of identified interventions, programs or models used to deliver respite care services for children with complex care needs and their families (e.g. eligibility criteria, location, duration)? ii) How is respite care defined in these included articles? iii) What are the outcome measures reported in the included articles? and iv) What are the reported barriers and enablers of implementing a respite care intervention, program or model for children with complex care needs and their families?
Inclusion criteria
Participants
The review will consider studies that include children and youth with complex care needs, medical complexity or complex chronic conditions and their families. Programs targeting pediatric populations with chronic illness receiving respite care will be included. Studies targeting children and youth 0-25 years of age will be included. However, given the cited difficulty in transitioning children with complex care needs from pediatric to adult care, as well as the challenge in providing respite care during this transition period,28,33-35 the upper age limit will remain flexible if the program's primary target remains children and youth. Excluded from this review will be respite care programs aimed at providing support to children and youth that are strictly at the end of life.
Concept
Any interventions, programs or models aimed at delivering respite care services to children and youth with complex care needs and their families will be included. These programs must be aimed at providing primary caregivers and families a break from caring and/or children a break from their primary caregivers. Respite care may take place inside or outside the family home and may vary in duration of time. Articles may comment on identified barriers and enablers at a system or individual level (e.g. policy, family perspectives, provider perspectives); however, articles will be included regardless of whether they comment on specific barriers and enablers to implementing their respite care intervention, program or model.
Context
This review will consider studies located in any care setting from any region across the globe. Programs exclusively focusing on hospice, palliative care and rehabilitation will be excluded unless they have a separate and specific respite component.
Types of studies
This scoping review will consider both experimental and quasi-experimental study designs, including randomized controlled trials, non-randomized controlled trials, before and after studies and interrupted time-series studies. In addition, analytical observational studies including prospective and retrospective cohort studies, case-control studies and analytical cross-sectional studies will be included. This review will also include descriptive observational study designs including case series, individual case reports and descriptive cross-sectional studies.
Qualitative studies will also be included that collect data such as, but not limited to, phenomenology, grounded theory, ethnography, qualitative description, action research and feminist research.
In addition, systematic reviews that report on aspects of respite care for the population of interest will be reviewed for primary studies that may meet eligibility criteria. Literature reviews will be excluded; however, any relevant primary articles will be included in our review.
Textual and descriptive papers will also be considered for inclusion in this scoping review.
Studies published in English will be included. No date restriction will be implemented. This will allow for the observation of any trends or changes in respite care services over time.
Methods
The proposed scoping review will be conducted in accordance with the Joanna Briggs Institute methodology for scoping reviews and follow five main steps: i) identifying the research question; ii) searching for relevant studies; iii) selecting studies; (iv) charting data and (v) amalgamating, synthesizing and reporting results.36
Search strategy
The search strategy will aim to locate both published and unpublished articles. An initial limited search of CINAHL and MEDLINE was undertaken to identify articles regarding pediatric respite care. The text words contained in the titles and abstracts of relevant articles, and the index terms used to describe the articles, were used to develop a full search strategy for CINAHL (see Appendix I). The search strategy, including all identified keywords and index terms, will be adapted for each identified database in the search. The reference list of all included articles in the review will be screened for any additional articles of potential relevance.
Information sources
The databases to be searched include CINAHL, PsycINFO, MEDLINE, Embase and ERIC. Sources of unpublished literature to be searched will include OpenGrey, Grey Literature Report, Canadian Electronic Library and Health Services Research Projects in Progress, as well as relevant organizational and governmental websites, including, but not limited to, Canadian Association of Paediatric Health Centres, Royal Australasian College of Physicians-Paediatrics and Child Health Division, Australian Paediatric Society, British Association of General Peadiatrics, Government of Australia, ARCH National Respite Network and Resource Center, Government of Canada, American Academy of Pediatrics, and United Kingdom Government.
Study selection
Following the search, all identified citations will be collated and uploaded into Covidence software (Covidence, Melbourne, Australia), and duplicates will be removed. Titles and abstracts will then be screened by two independent reviewers for assessment against the outlined inclusion criteria for this scoping review. All potentially relevant studies will be retrieved in full and their citation details will be imported into the Covidence software. The full text of the potentially relevant citations will be assessed in detail against the inclusion criteria by two independent reviewers. Reasons for exclusion of full-text studies that do not meet the inclusion criteria will be recorded and reported. Any disagreements that arise between the reviewers at each stage of the study selection and screening process will be resolved through discussion. If consensus cannot be achieved, a third reviewer will be consulted. The results of the search will be reported in full in the final report and presented in a Preferred Reporting Items for Systematic Reviews and Meta-analyses (PRISMA) flow diagram.37
Data extraction
Data will be extracted from articles included in the scoping review by two independent reviewers using a pre-defined data extraction tool developed by the reviewers and research team. Extracted data will include specific details about the population, concept, context, study methods and key outcome findings relevant to the review objective. A draft charting table (see Appendix II) has been created outlining the study information to be extracted, which includes author(s), year of publication, country of origin, study aim/purpose, study population, study setting, study design, respite care definition, underlying theory, intervention characteristics, eligibility criteria for intervention, payment model, outcome(s), barriers and enablers to implementation and author conclusions. Barriers and enablers will be extracted as reported by the study authors and then grouped accordingly to level of impact (individual and system). The draft data extraction tool will be pilot tested with three of the included studies, and results will be examined by members of the review team. The data extraction form will be modified and revised as necessary, and all modifications will be detailed in the full scoping review report. Any disagreements that arise between the reviewers will be resolved through discussion to achieve consensus. If consensus cannot be reached between reviews, a third reviewer will be consulted to achieve a decision. The reviewers will contact authors of included studies for additional information if warranted.
Data presentation
We will follow the PRISMA reporting guidelines for scoping reviews.37 The extracted data will be presented in tabular form in a manner that aligns with the objective of this scoping review to highlight key findings. A narrative summary will accompany the tabulated results and will describe how the results relate to the overall aim and subquestions outlined in this review. Common themes and components across included studies in relation to characteristics, delivery, and eligibility criteria will be highlighted in narrative format.
Acknowledgments
We would like to acknowledge Ms. Jocelyn Vine and Ms. Stacy Burgess at the IWK Health Centre for their support with this initiative. Furthermore, we would like to thank the families who shared their challenges accessing respite care services and led us to pursue this initiative to address this gap in care provision.
Funding
We would like to acknowledge the support from the IWK Nursing Strategy Fund. This award supported our preliminary work that led us to pursue this scoping review.
SB is supported by funding from the Predoctoral Level 2 Killam Scholarship, Nova Scotia Health Research Foundation Scotia Scholars Doctoral Award, Dalhousie University School of Nursing, Helen Watson Memorial Scholarship, and BRIC NS Student Research Award.
Appendix I: Search strategy for CINAHL
Search conducted on August 29, 2018
Appendix II: Data extraction instrument
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