Trauma-Informed Care Practices to Support Caregivers of Children with Severe Illness: Protocol for A Systematic Review

doi:10.21203/rs.3.rs-2507214/v1

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Trauma-Informed Care Practices to Support Caregivers of Children with Severe Illness: Protocol for A Systematic Review

https://doi.org/10.21203/rs.3.rs-2507214/v1

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Background

Family caregivers of children with life-limiting illness or chronic complex medical conditions experience significant psychological challenges related to the diagnosis, treatment, and care of their child. Trauma-informed (or trauma- and resiliency-informed) care interventions targeted at directly preventing or managing trauma-related symptoms using psychological approaches have potential to improve distress and distress-related symptoms among caregivers. The overall objective of this parent-led systematic review is to synthesize the literature on the effect of trauma-informed care services for the prevention and management of traumatic stress and related symptoms in the family caregivers of children with life-limiting or complex medical conditions.

Methods

Our systematic review will identify studies reviewing the effectiveness of trauma-informed care services for the prevention and management of traumatic stress and related symptoms in family caregivers. We will search Medline, PsycInfo, Embase, CINAHL, Cochrane CENTRAL, the Applied Social Sciences Index and Abstracts, and Social Services Abstracts databases for articles describing trauma-informed care interventions for these family caregivers. All titles and abstracts will be screened independently and in duplicate with discrepancies resolved by caregivers with lived experience. The same process will be used for full-text articles. Data abstraction will also be conducted independently and in duplicate with team members who are caregivers resolving discrepancies. Data analysis will involve syntheses of study results to better understand intervention effect and related complexities.

Discussion

This family caregiver initiated- and co-lead systematic review will identify, appraise, and report on the effectiveness of trauma-informed care interventions aiming to prevent or manage traumatic stress and related symptoms in the family caregivers of children with life limiting illnesses. This review will provide needed data to inform the co-design and implementation of high-quality care services aimed at health improvements for families of children with life-limiting or chronic complex medical conditions.

Systematic review registration: PROSPERO 2022 CRD42022331536 Available from: https://www.crd.york.ac.uk/prospero/display_record.php?ID=CRD42022331536

systematic review

post-traumatic stress symptoms

trauma-informed care

parents

family caregivers

child

pediatrics

intervention

effectiveness

A child’s diagnosis of a life-limiting, life-threatening disease or complex medical condition is a known traumatizing event for family caregivers [1–4]. The child’s prognosis and care or treatment regime, the provision of direct medical and psychosocial care to the child, associated financial burden, regular complex decision-making work, and care coordination tasks all contribute to caregiver distress [5–9].

Family caregivers experience significant psychological challenges, including anxiety and depression at levels equal to or greater than patients and exceeding levels experienced by parents of healthy children [1,10–13] Approximately 20-30% of family caregivers experience post-traumatic stress symptoms (PTSS) which include negative alterations in mood and cognition, avoidance of trauma reminders, and intrusive thoughts, sleep disturbances, confusion, dissociation, and agitation [14]. Such symptoms are associated with decreased caregiver quality of life, poorer physical health, and diminished social functioning [15–17]. Moreover, within the context of life-limiting and complex pediatric illness and care, family caregivers (e.g., immediate family members, such as parents, siblings, grandparents, and legal guardians) are essential supports to their child’s health and wellbeing. Child health outcomes may then be negatively impacted by psychosocial strain-related impairments to caregiving ability [18].

Recognizing that distressing events, including the diagnosis and treatment of severe illness in one’s child, increases the risk for trauma symptoms [19]. Therefore, it is critical to establish effective and well-implemented support interventions and services to mitigate distress and maximize caregiver and child health. Trauma-informed care interventions also known as trauma- and resiliency-informed care to highlight the strengths-based nature of the approach [20], are defined as interventions that directly target the prevention or mitigation of trauma-related symptoms using specialized psychological approaches, and further emphasize the importance of recognizing the signs and impact of trauma when providing specialized psychological practices [9]. These interventions have the potential to improve post-traumatic stress symptom-related outcomes in the family caregivers of seriously ill children, enabling them to feel empowered despite their traumatic experiences [9].

However, little is known of the trauma experience of caring for and/or losing a child who has a life-limiting or chronic illness—particularly in relation to the existence and effectiveness of trauma-informed care interventions for caregivers. To begin to inform the design and development of effective trauma-informed interventions that might be implemented into routine pediatric healthcare practice, an examination of the related state of the science is needed. Moreover, to challenge current paradigms related to stakeholder engagement in intervention design [21,22], an identification, critique, and synthesis of both qualitative and quantitative research is required to gain a deeper understanding of how caregivers experience trauma-informed care interventions.

The overall objective of this parent-led systematic review is to synthesize the literature on the effect of trauma-informed care services for the prevention and management of traumatic stress and related symptoms in the family caregivers of children with life-limiting illness and complex medical conditions. Our primary objective is to describe the effectiveness of trauma-informed interventions on post-traumatic stress symptoms in caregivers. Our secondary objectives are to: a) describe the effectiveness of trauma-informed interventions on other trauma-related symptoms including general psychological wellness, and somatic manifestations associated with trauma in caregivers; b) examine which interventional and study methodological characteristics might explain any heterogeneity in intervention results; and c) synthesize themes describing caregivers’ experiences of receiving trauma-informed care interventions, the impact of such care on family caregivers, and their suggestions for service improvement.

Research Approach and Framework

To answer our research questions, we will use a systematic review of the literature with meta-analysis if appropriate. We have followed the guideline detailed in the Preferred Reporting Items for Systematic Reviews and Meta-Analyses Protocols (PRISMA-P) checklist to develop this protocol [23] (Additional File 1). The protocol has been registered on PROSPERO (CRD42022331536). The PRISMA checklist [24] will inform reporting of the final review and the PRISMA-Search (PRISMA-S) checklist has informed reporting of the database and supplementary search methods [25]. A plain language summary of the protocol is presented as Additional

File 2.

Eligibility criteria

We will include all studies that report the effect of trauma-informed care interventions in family caregivers of children with life-limiting conditions on one or more of our selected outcome measures as per Table 1 and Additional File 3. We will include research using all study designs but will evaluate the level of evidence of each study and will stratify our reporting of results by prioritizing the most robust evidence. Quantitative studies without a comparator will be included in a narrative synthesis of results. Qualitative studies, including those without a comparison group, will be included in a thematic synthesis to understand caregivers’ lived experience with trauma-informed care services.

We will include all primary literature meeting our specified inclusion criteria. We will exclude commentaries, study protocols, discussion papers, and book chapters. The authors of related conference abstracts will be contacted to request further information. If no further information is available, the abstract will be excluded. We will not limit to those studies published in English and, should studies in other languages be identified, we will seek the support from collaborators fluent in those languages to translate study findings. Eligibility criteria will be tested through piloting by two team members (PP and IZ) and agreement will be established among all team members prior to commencing the study selection process.

Information sources

A search strategy has been developed by our team of pediatric care researchers and persons with lived experience (e.g., family caregivers of children with life-limiting illness) in conjunction with a health sciences librarian (MM). Comprehensive database searches were conducted in the following databases on May 16, 2022 by MM: Ovid MEDLINE (Epub Ahead of Print, In-Process & Other Non-Indexed Citations, Ovid MEDLINE® Daily and Ovid MEDLINE® 1946-Present), Ovid Embase + Embase Classic (1947 to 2022 May 13), EBSCO CINAHL Plus with Full Text (1981 to present), Ovid APA PsycInfo (1806 to May Week 2 2022), Wiley Cochrane CENTRAL, ProQuest Social Services Abstracts, and ProQuest Applied Social Sciences Index and Abstracts [link to appendix]. A combination of subject headings and text words specific to each database were used to search for the concepts of traumatic stress and family caregivers as well as relevant synonyms. No limits or filters were used. The Ovid Medline search strategy was peer reviewed by a qualified health sciences librarian prior to search translation using the Peer Review of Electronic Search Strategies (PRESS) guidelines [26]. We will also search the reference lists of included studies and identified systematic literature reviews and topical reviews.

Search strategy and study record management

Our search strategy is presented in Additional File 4. The strategy was piloted by: (a) ensuring it captured relevant studies known to our team; (b) initially screening in duplicate the first 200 articles in each database for general article relevance; and (c) screening 500 articles retrieved from a search of a term not included in our strategy to ensure no relevant articles were found in this discrepant search case. We will conduct new searches to capture studies that may have been missed by our original strategy should we uncover other relevant databases or search terms not included in our strategy during extraction and reference list searching.

Data management

Search results were deduplicated in EndNote using an optimized method [27] and were then uploaded to Covidence where additional duplicates were removed. All screening (title/abstract and full-text) will occur in Covidence.

Selection process

Titles and abstracts were independently screened in duplicate by three team members (IZ, PP, and KW). Disagreements regarding study inclusion were resolved through discussion with a third team member with lived experience (BP or CC). Full-text reports appearing to meet eligibility criteria will be located. If a full-text report cannot be located online (including through our access to affiliated libraries), we will attempt to identify the email addresses of abstract authors and contact them for access to the full report. If there is no reply from the authors after two weeks, we will send a follow-up email. If there is still no reply after a subsequent two-week period, we will consider the abstract unavailable. Full-text reports will also be screened in duplicate with discrepancies resolved by a third team member with lived experience. We will record the rationale for excluding each full-text study. Only those studies with a comparator group will be included in a meta-analysis.

Data collection process

We will develop a standardized REDCap-based electronic form with associated coding manual for the abstraction of data from each included study. This form will be developed by our team, piloted in duplicate with 4-5 randomly selected studies, and revised where needed. The form will also include key elements recommended for reporting in qualitative studies [28]—specifically, methodological orientation and theory, analytical process, as well as the presented themes and quotations that relate to our objectives. Two team members will conduct data abstraction and coding of information independently. Disagreements will be resolved through discussion with a third team member with lived experience. Corresponding study authors will be contacted should any uncertainties arise.

Data extraction items

In addition to items listed above, the following data items will be coded for each included study: (a) data source, (b) study country, (c) language, (e) study design, (f) method, (g) source of funding, and (h) sample size. The following characteristics of family caregivers will also be coded: (a) age, (b) sex, (c) gender, (d) race, (e) ethnicity, (f) income, (g) type of caregiver, (h) relationship status, and (i) family makeup (i.e., details of other children). The following characteristics of the caregiver’s associated child will be coded: (a) age, (b) sex, (c) gender, (d) race, (e) ethnicity, (f) diagnosis, (g) treatment regime, and (h) alive or passed.

As per the Template for Intervention Description and Replication (TIDieR) checklist [29], the following characteristics of the trauma- and resiliency-informed care intervention will be collected: (a) type, (b) goal, (c) associated materials, (d) procedure, (e) intervention provider profession, expertise and specific training, (f) location, (g) session frequency, schedule, and duration, (h) any described tailoring of the intervention to individuals, (i) modifications to the intervention during the study, (j) assessments of intervention adherence by caregivers, and (k) assessments of intervention fidelity.

For all quantitative studies we will code the outcome measure used and reported mean and standard deviation values for each outcome (primary and secondary) measured pre- and post-intervention. In the event means and standard deviations are not reported we will collect effect estimates, confidence intervals, test statistics, P-values and individual participant data where reported.

Risk of bias in individual studies

The checklist developed by Hawker et al [30] will be used to appraise the quality of studies in this review. This 9-item checklist was designed to accommodate the appraisal of studies using disparate research methodologies. The tool has been recommended for use in systematic reviews that include studies from varying epistemological and methodologic perspectives [31] and has been successfully applied in systematic reviews such as this one [32]. Two reviewers will independently use the tool to appraise the quality of eligible studies. Any disagreements will be resolved by discussion involving a third reviewer.

Data synthesis

Descriptive statistics (i.e., frequencies and percentages) will be used to summarize and present quantitative data across all included studies. For further analyses, we will plan to make a judgement on the most appropriate data synthesis process depending on the amount and type of available data after data abstraction. Our decision-making process will be transparent and clearly documented in our result dissemination materials.

In the instance that sufficient data are available for quantitative syntheses, we will use random-effects models to combine data across studies using open-source R software. Outcomes will be analyzed using weighted mean differences (with 95% CI) or standardized mean differences (95% CI) if different measurement scales are used. The I² statistic will be used to quantify heterogeneity. We will use the criteria set out by Higgins et al [33] to interpret the statistic; namely, 0–40% may be considered unimportant, 30%– 60% as moderate, 50%–90% substantial and 75%–100% considerable. If heterogeneity is substantial, we will not perform a meta-analysis and instead use only narrative synthesis.

We will examine potentially important effect size modifiers using meta-regression analysis. Modifiers are based on previous meta-analytical work into the effect of trauma- and resiliency-informed care practices [34] and are (a) treatment modality (individual v. group); (b) intervention focus (prevention v. treatment); (c) length of treatment (in hours); (d) control group type (no treatment v. waitlist v. attention control); (e) outcome measure type (primary v. secondary); (f) quality assessment level of study; and (g) gender (male v. female). We will conduct subgroup analyses if a meta-regression analysis is statistically significant.

In the instance that sufficient data are available for a qualitative synthesis, thematic synthesis methods that have been previously described [35] used successfully in syntheses of qualitative pediatric health research [36] will be used. Copies of identified studies will be uploaded to NVivo 12 software and two reviewers will independently conduct line-by-line coding of the results section of each study, specifically coding direct quotations and descriptions of participants’ comments and behaviors using an inductive approach. As data are coded, a bank of codes will be developed and applied across all studies. Coding choices will be frequently discussed between will all team members, and discrepancies will be resolved using group discussion. Codes will be collapsed, if appropriate, and grouped into themes. Themes produced from the data and relationships among themes will be discussed as a group.

Given our plan to include a broad group of study designs, we will plan to use a narrative synthesis method to bring together all results [37]. Following the methods of previous systematic reviews of pediatric family caregiver health [32], we will use review of tabled text-based data to identify perceived areas of correspondence and relationships between studies and health outcomes.

Meta-bias (publication bias, selective reporting)

We will assess the impact of risk of bias using current and appropriate methods per the Cochrane Collaboration.

Confidence in cumulative evidence

We will use the Grading of Recommendations Assessment, Development, and Evaluation (GRADE) approach to determine the degree of certainty to place in our quantitative findings [38]. We will use the Grading of Recommendations Assessment, Development, and Evaluation Confidence in the Evidence from Reviews of Qualitative research (GRADE-CERQual) approach to determine the degree of certainty to place in our quantitative findings [39].

Person with lived experience-research leadership collaboration plan

Study leads (BP and LJ) have and will continue to be intricately involved in every aspect of this review. We have collaborated on all decisions related to the review objectives, design, and methods, will co-lead the data collection and analyses phases, and collaborate on all aspects of dissemination. We will continue this collaboration through the following mechanisms: (a) standing bi-weekly meetings (30-90 minutes in length depending on stage of review) to review progress and results, identify and troubleshoot issues, and plan for dissemination and next working steps; (b) ad hoc meetings at any time between scheduled meetings; (c) short conversations via email or text to address emergent issues expediently.

Results dissemination

Our dissemination activities will target three stakeholder audiences: (a) family caregivers, (b) pediatric clinicians, and (c) health care decision and policy makers. We have designed our strategy to accomplish the following dissemination objectives: (a) increase awareness of the impact of medical and associated traumas on the psychosocial and behavioural health of family caregivers, including associated risk and protective factors; and (b) mobilize immediate clinical practice, research, and health care policy solutions to improve trauma-related outcomes for family caregivers. Achieving these objectives will directly and rapidly inform care. The exact nature of hospital practice and policy changes will be informed by our study data and our routine consultations with our family caregiver partners. As a team, we already envision several low-cost solutions that could be readily implemented in Canadian pediatric hospitals and other care settings. Specifically, in alignment with the Marsac et al [9] position paper on implementing a trauma-informed approach in pediatric heath care networks, the following could be implemented: routine risk screening family caregivers to identify those for targeted delivery of evidence-based interventions and training for clinicians in trauma-informed practices.

Through an integrated knowledge translation strategy, the family caregivers and interdisciplinary clinicians embedded in our team will ensure effective and expedient uptake of this research into practice. These stakeholders have expertise in research co-design and have been engaged in designing all aspects of this review. They will be intricately involved in supporting data collection, results interpretation, and dissemination, and will take lead roles in advocacy efforts to support care institution policy change related to the trauma-informed care of family caregivers. To further mobilize our findings we will use the following end-of-study knowledge translation mechanisms - with all co-designed product available in English and French: (a) care institution policy papers for the care sites and government (papers will cover study findings and policy options identified through family caregiver consultation); (b) media releases; (c) 1-page plain language summaries for newsletters and our affiliated organization websites; (d) a social media campaign using bespoke content disseminated through our social networks; (e) presentations at major pediatric conferences and clinician- and family caregiver-focused educational meetings (to review identified results); and (f) open access publications in leading journals to target researchers and practicing clinicians. Further, specific implications pertaining to family caregiver subgroups (i.e., across age, sex, gender, race, ethnicity, etc.) will be highlighted in dissemination efforts to enhance impact.

Family caregivers of children with life-limiting or life-threatening disease or medical complexity face unique challenges over the course of their child’s care continuum which have potential to significantly and negatively impact their overall wellbeing. Despite literature measuring and describing the prevalence of traumatic stress in caregivers [3,40–43], no systematic review has been conducted to identify, appraise, and report on the effectiveness of trauma-informed care interventions aiming to prevent or manage traumatic stress and related symptoms in this group. Such a review has great potential to inform the development of interventions, and subsequent clinical care guidelines, to the benefit of both caregiver and child health.

This systematic review is unique in being family caregiver-initiated and co-lead. Meaningful and active leadership and collaboration with caregivers in review decision-making, conduct, and interpretation ensures that the perspectives of those most impacted by life-limiting and chronic disease in childhood shape the future research evidence and scare they receive. This integration will further support us in expediently translating knowledge derived through this review into health policy and clinical practice [44]. When complete, this review will provide crucially needed data to inform the development and implementation of high-quality, caregiver co-designed services aimed at lasting health enhancements for families of children with life-limiting and/or medical complexity.

CINAHL Cumulative Index of Nursing and Allied Health Literature Plus

PRISMA Preferred Reporting Items for Systematic Reviews and Meta-Analyses

PRISMA-P Preferred Reporting Items for Systematic Reviews and Meta-Analyses

Protocols

PTSD Post-Traumatic Stress Disorder

PTSS Post-Traumatic Stress Symptoms

GRADE Grading of Recommendations Assessment, Development, and Evaluation

GRADE-CERQual Grading of Recommendations Assessment, Development, and Evaluation

Confidence in the Evidence from Reviews of Qualitative research

TIDieR Template for Intervention Description and Replication

Ethics approval and consent to participate: Not applicable.

Consent for publication: Not applicable.

Availability of data and materials: Not applicable.

Competing interests: The authors declare that they have no competing interests.

Funding: We acknowledge the financial support of the SPOR-Evidence Alliance [AWARD #100-21] provided as part of a Canadian Institute of Health Research (CIHR) grant to Dr. Andrea Tricco (GSR-154442). The Funder reviewed the protocol, providing academic critique, before study commencement.

Authors' contributions: BP conceptualized this review. BP and LJ led the development of the protocol in consultation with all other authors. MM designed the search strategy in collaboration with CC, BP, LJ, EL, and MC. PP and IZ piloted the eligibility criteria. PP, IZ, and EH piloted the search strategy. Screening to date has been by IZ, PP, KW, BP and CC. LJ, EH, PP and IZ drafted the manuscript. All authors read, revised, and approved the final manuscript.

Acknowledgements: Not applicable.

Authors' information (optional): Not applicable.

Additional Files:

Name: Additional File 1 – PRISMA-P

Format: Microsoft Word Document (.docx)

Title of Data: PRISMA-P 2015 Checklist

Description of Data: Checklist describing recommended items to address within a systematic review protocol and where it is located within the manuscript.

Name: Additional File 2 – Lay Protocol Summary

Format: Microsoft Word Document (.docx)

Title of Data: Trauma-Informed Care Practices to Support Caregivers of Children with Severe Illness: A Systematic Review - Plain Language Summary of the Protocol

Description of Data: Brief summary of the research protocol in lay terms to explain scientific research to those that may not have prior knowledge about the subject.

Name: Additional File 3 – PICO Study Eligibility Flowchart

Format: Microsoft Excel Document (.xlsx)

Title of Data: PICO Flowchart

Description of Data: A highly detailed flowchart which depicts the inclusion and exclusion criteria for this study based on the population, intervention, comparison, and outcomes.

Name: Additional File 4 – Search Strategy

Format: Microsoft Word Document (.docx)

Title of Data: Systematic review search strategies

Description of Data: Overview of the search strategies run by Mikaela Mitchell on May 16, 2022.

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Trauma-Informed Care Practices to Support Caregivers of Children with Severe Illness: Protocol for A Systematic Review

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