Significance-Current Interventions - University of Alabama
Are remote interventions effective in improving caregiver burden outcomes for caregivers of traumatic brain injury survivors? Zainab Suntai1 1University of Alabama, School of Social WorkAuthor Note Zainab Suntai correspondence regarding this article should be directed to Zainab Suntai at zsuntai@crimson.ua.eduAbstractPurpose/Objective: Caregiver burden is the term used to define the adverse effects of caregiving and its prevalence amongst caregivers of Traumatic Brain Injury (TBI) survivors is amplified by the suddenness of brain injury. This systematic review aimed to identify whether remote interventions can be helpful in minimizing those financial, emotional, and physical stressors associated with caring for a TBI survivor. Methods: Studies were located by searching the following databases: PsychINFO, PubMed, Science Direct, Web of Science, Academic Search Premier, CINAHL, Medline and Cochrane Central Register of Controlled Trials. Studies were included if they met the following criteria: 1) The study must be published in English 2) The study must be published in a peer-reviewed journal 3) The study must implement a remote intervention specific to caregivers of people with TBI 3) One or more symptoms of caregiver burden must be measured as an outcome Results: After the review process, 12 articles met the inclusion criteria for the study. Most of the studies were randomized controlled trials, used an online problem-solving module, and targeted parents of children/adolescents with a TBI. 10 out of the 12 studies (83.3%) found that remote/online interventions improved caregiver burden outcomes and only two studies did not find improvement in caregiver burden outcomes. Conclusion: Results from this systematic review indicate that online interventions can be as effective as in-person interventions in reducing the symptoms of caregiver burden for caregivers of TBI survivors. Implications for practice, research and policy are discussed. Keywords: remote; caregiver; burden; intervention; TBIAre remote interventions effective in improving caregiver burden outcomes for caregivers of traumatic brain injury survivors? Introduction Traumatic Brain Injury (TBI) is a chronic condition that affects 2.5 million people in the United States each year and many people with TBI sustain long-lasting physical, cognitive, and psychological disabilities as a result (Kreitzer et al., 2018). The abruptness of brain injury often leaves family members unprepared for the complex challenges that ensue, demanding efficient decision-making about issues that are not often opaque. The etiology of TBI is often an accident that causes blunt force injury to the head, thereby affecting a miscellany of demographics (The Mayo Clinic, 2019). Disabilities can last for several years, sometimes requiring special medical equipment, frequent hospitalizations, assistance with activities of daily living and medication management (Stocchetti & Zanier, 2016). The impact of a TBI can result in a domino effect of changes not just for the patient, but their family members as well (Mantell et al., 2018). The associated deficits in day to day functioning can also lead to a breakdown of the family system as roles begin to shift to accommodate to the patient’s condition (Carlozzi, 2015). These shifts in roles and the emergence of new responsibilities affect psychological health as caregivers of brain injury survivors have been found to have worse mental health compared to caregivers of people with Dementia and caregivers of people with Cancer (Harding et al., 2015). The uniqueness of caregiver burden for the caregivers of people with TBI is associated with the variance in the condition, the level of impairment and the associated symptoms (Brickell et al., 2018). Severe TBIs for example, are more likely to have a high impact on caregiver burden, because it is most associated with long-term deficits in memory, attention, language, processing and overall executive functioning (D’Ippolito et al., 2019). Significance-Current InterventionsThe prominence of caregiver burden as an issue for both caregivers and care recipients has proliferated intervention research over the past few decades (Kreutzer et al., 2018). Intervention research for TBI survivors is starting to include family caregivers and independent research on caregiver well-being has also emerged (Damianakis et al., 2016). Malec et al. conducted a systematic review to determine interventions for caregivers of veterans with a TBI and found that group interventions in particular benefit both the veteran and their caregivers financially and psychologically (2017). Shepherd-Banigan and colleagues also conducted a systematic review of interventions that either support or involve caregivers of TBI survivors. Some of the interventions that were found included illness education, skills training, social support, psychological therapy and help with resource navigation (Shepherd-Banigan et al., 2018). Another systematic review conducted by Baker and colleagues found that most of the interventions for caregivers of TBI survivors focused on education, empowerment, peer support and peer mentoring. Within most studies, the caregivers showed improved outcome measures, and half of those studies conducted follow-ups where caregivers maintained those improved outcome measures (Baker et al., 2017). Interventions that include remote, online, or internet-based modalities have also burgeoned particularly in the last two decades as barriers to accessing services for caregivers have become more prominent. Online counselor-assisted problem-solving interventions and online parent training programs have been found to be effective in reducing psychological distress specifically for lower-income families (Petranovich et al., 2015; Raj et al., 2015). Remote interventions are especially important for family members who may have limited time or resources to be able to attend in-person interventions such as support groups (Brown et al., 2019). This is particularly important because the highest occurrences of TBI’s are among young adults living in rural communities with few financial and geographic resources (Yue et al., 2020). These individuals and their families often report issues around lack of transportation, long distances, lack of motivation and fear of leaving their care recipient unattended as barriers to attending support groups (Harrison et al., 2017). With this noted prevalence of caregiver burden among caregivers of TBI survivors and the unique challenges to accessibility, the purpose of this systematic review is to examine if remote interventions can be effective in addressing caregiver burden among caregivers of TBI survivors. MethodsSearch Strategy?To inform the systematic review process, the Preferred Reporting Items for Systematic Reviews and Meta Analyses (PRISMA) was used (Moher et al., 2009). Studies employing remote interventions were identified through the following databases: PsychINFO, PubMed, Science Direct, Web of Science, Academic Search Premier, CINAHL, Medline and Cochrane Central Register of Controlled Trials. The following search terms were used, using Boolean operators when possible: TBI OR Traumatic Brain Injury AND Online OR Distance OR Web-Based OR E-Learning OR Virtual OR Remote OR Internet OR Tele OR Phone OR Text OR Social Media OR Email OR Digital OR Cyber OR Technology OR Video AND Caregiver Burden OR Caregiver Stress or Caregiver Burnout OR Caregiver Fatigue OR Caregiver Strain. Search terms were tested initially by the first author with the final terms created with input from all authors. The step-by-step search process was documented using a systematic review worksheet created by the University of Canberra, which was modeled according to PRISMA guidelines (Turner, 2020). Search terms were modified when necessary, to meet the specifications or term limits of some databases. Manual references of relevant studies were also conducted by the first author to identify any related articles that may have not been identified in the search process. Inclusion and Exclusion CriteriaStudies were included if they met the following pre-set criteria, developed by the first author and approved by all other authors: (1) The study must be published in English 2) The study must be published in a peer-reviewed journal 3) The study must implement a remote intervention specific to caregivers of TBI survivors 3) One or more symptoms of caregiver burden must be measured as an outcome. The exclusion criteria were determined to ensure that only scientific evaluations of remote interventions were included. As such, studies were excluded if they were not written in English, if they were not published in a peer-reviewed journal, if a remote intervention was not implemented, if the study population did not specifically include caregivers of TBI survivors and if caregiver burden outcomes were not measured. No limitations were placed on publication years, in order to provide a comprehensive account of available remote interventions for caregivers of TBI survivors. ScreeningAfter the initial searches of each database, the articles from all databases were combined into a RefWorks’ folder. The first author then conducted an initial screening for duplicates using a RefWorks’ tool, and then a manual search for duplicates to ensure thoroughness. This was followed by a screening of titles and abstracts, conducted by the first author. All articles that did not appear to be relevant to the study were relocated to another folder and later screened again to ensure they did not meet the inclusion criteria. The articles that were determined to be relevant based on titles and abstracts then received a full-text screening by the first author, applying the pre-determined inclusion criteria as a framework for final assessment. Data ExtractionA data extraction table was created to identify information relevant to the systematic review. Relevant data were determined by the inclusion criteria and a drafted study results table with specific headings. Information about the methodology used in the study, the number, and characteristics of the participants in the study, the type of remote intervention implemented, the results of the study and the conclusion of effectiveness were extracted. Quality AssessmentTo examine the quality of each studies identified, specific quality assessment tools were used for the mixed methods and quantitative studies. Quantitative studies were screened for quality with the Quality Assessment Tool for Quantitative Studies (Effective Public Health Practice Project, 1998) and the mixed methods studies included an assessment with the Mixed Methods Appraisal Tool (MMAT) version 2018 (Hong et al., 2018). Quality assessments were conducted independently by the first and second authors and then later compared for similarities. Studies were only included when there was a 100% agreement on quality by the first and second authors. No studies were excluded on the basis of the quality assessment. Records Identified338 records were identified using the pre-determined search terms across all the databases. After duplicates were eliminated using a RefWorks’ tool and a manual search, 325 records were left. The titles and abstracts of the remaining records were assessed, resulting in 37 articles left for full-text screening and 288 articles that were excluded. The inclusion and exclusion criteria were applied to the 37 articles with a final result of 12 articles to be included in the systematic review. One article was not available to the first author online and was obtained directly from the author of the article after an email request. The PRISMA flow diagram is depicted in Figure 1 below. <Insert Figure 1 Here>ResultsStudy CharacteristicsThe 12 articles included in the systematic review were: Albert et al., (2002), Brown et al., (1999), Carey et al., (2008), Damianakis et al., (2016), McDonald et al., (2019), McLaughlin et al., (2013), Petranovich et al., (2015), Raj et al., (2015), Rotundi et al., (2005), Wade et al., (2006), Wade et al., (2012) and Wade et al., (2014). Five of the studies were randomized-controlled trials, four other studies used an unspecified quantitative method, two studies used mixed methods and one study used a quasi-experimental design. Study publication years ranged over a 20-year period from 1999 to 2019. Sample sizes ranged from a minimum of 5 to a maximum of 201, and all participants were informal caregivers, spouses, or family members to a TBI survivor. Five studies assessed caregivers of adult brain injury survivors and the remaining seven assessed caregivers of pediatric and/or adult survivors. Overall, 10 (83.3%) of the 12 studies indicated that remote interventions are effective in reducing caregiving burden. Only two (16.6%) of the studies did not find any improvements in caregiver burden domains after the intervention. The specific interventions implemented, and their results are discussed below: Telephone Interventions Two studies (16%) implemented a remote intervention that included telephone interactions. Albert et al. found that caregivers experienced less burden, greater caregiving satisfaction and greater overall quality of life at the end of the intervention (2002). Brown et al. found that participants receiving the telephone intervention and the ones receiving in-person support both had improved outcomes, concluding that remote interventions as just as effective as in-person interventions (1999). Online Problem-Solving Interventions Three studies (25%) implemented an online problem-solving intervention and both groups had an internet resource only comparison group. The participants in the internet-resource only groups only received a list of websites with resources about caregiving but no direct interaction or access to the problem-solving module. Participants in the problem-solving intervention group received access to a website with 45-60-minute modules about problem-solving skills. Carey et al. found that participants in the online problem-solving group had overall improved caregiving functioning. Participants who had prior experience using technology particularly had greater improved outcomes compared to those without prior technology use (2008). Wade et al. found that parents who were in the problem-solving group reported less depression, anxiety, and overall psychiatric symptoms at follow-up while the internet resources group did not have any improvements (2006). Wade and colleagues had different results in a study six years later, with participants in both groups reporting high satisfaction, suggesting that remote interventions in general can be effective (2012). Online Counselor-Assisted Problem-Solving InterventionsTwo studies (16%) implemented an online counselor-assisted problem-solving intervention with an internet resource comparison group. The counselor-assisted problem-solving intervention included access to the same training modules as the regular problem-solving intervention followed by an additional skype session with a clinical psychologist. Petranovich and colleagues found that lower-income caregivers particularly experienced reduced psychological distress (2015) while Wade and colleagues found that participants who had prior computer use had better outcomes than those who did not have prior computer use (2014). Other Remote Interventions Five (41.6%) of the studies discussed other types of remote interventions. Damianakis and colleagues implemented a web-based video support group with participants reporting high levels of satisfaction at the end of the intervention (2016). Raj et al. implemented an online parent training program and found that lower-income caregivers particularly had reduced psychological burden at the end of the intervention (2015). Rotundi et al., implemented a website support intervention with a support group, discussion boards and other online resources, with findings indicating that the online support groups were most helpful (2005). The final two studies were the only ones included in this systematic review that did not find an improvement in any domains of caregiver burden. Mclaughlin et al. implemented an interactive multimedia intervention to teach advocacy skills to caregivers and found that knowledge and advocacy skills improved, but not life satisfaction (2013). McDonald et al. used an online psychoeducation treatment program with five caregivers of TBI survivors and found that participants did not have any improved outcomes at the end of the intervention (2019). The results of all studies included in the systematic review are provided in Table 2 below: <Insert Table 1 here >DiscussionThe purpose of this systematic review was to determine if remote interventions are effective in improving caregiver burden outcomes for caregivers of TBI survivors. Our results indicate that remote interventions are indeed effective, with 10 out of 12 (83.3%) of the articles reporting improved measures of caregiver burden after a remote intervention was implemented. This finding is consistent with past studies that have found remote interventions to be effective for caregivers of people with other conditions including dementia, cancer, Alzheimer’s, stroke, chronic disease, heart disease, spinal cord injury and severe mental illness (Chi & Demiris, 2015). We particularly found that all studies using telephone interventions, online problem-solving interventions and counselor-assisted problem-solving interventions had improved outcomes for caregivers. Telephone interventions have been previously tested on caregivers of people with dementia, which is another cognitively impairing condition similar to a TBI. Tremont and colleagues for example, discovered an improvement in depressive symptoms and reactions to behavior problems in care recipients, after implementing a 6-month telephone intervention for family caregivers (2015). The problem-solving intervention and counselor-assisted problem solving interventions prominently included one consistent author (Wade), who developed the intervention and has tested it across multiple samples with consistently positive outcomes (Wade et al., 2004; Wade et al., 2005; Wade et al., 2010; Wade et al., 2012; Wade et al., 2014 ). Other studies used a range of online/internet-based interventions, including online support groups which were found to be effective (Damianakis et al., 2016; Rotundi et al., 2005). Support groups have been proven to be effective in addressing distress in people with chronic conditions (Cutler, 2018) and for caregivers of people with dementia (Dam et al., 2016). They have also been used to provide social support to mothers with post-partum depression (Anderson, 2013) and shown to improve social outcomes in stroke patients (White, 2016). Support groups have also been linked to long-term effectiveness for the caregivers of people with mental illnesses (Worral et al., 2018) and have been found to be a great source of social support, a safe space to address shared experiences and a way to improve social isolation (Kirst-Ashman & Hull, 2015). While these noted benefits to support groups exist, support groups and other in-person interventions for TBI survivors require time and travel commitments that may inhibit particularly rural-dwelling caregivers from attending (Yue et al., 2020). Caregivers have previously listed lack of transportation, long distances, and lack of respite services as barriers to receiving services to address their caregiver burden (Brown et al., 2019; Harrison et al., 2020). Caregivers who have limited family support for example, may not have someone to leave their care recipient with and depending on the functionality of the care recipient, leaving them unattended might be dangerous. Remote interventions offer the opportunity for caregivers to gain the same benefits as they would from in-person services without having to deal with transportation, time, or distance issues and without having to leave their loved one unattended (Harrison et al., 2020). The results of this systematic review indicate that remote interventions are effective in improving caregiver burden outcomes and in some cases, are just as effective as in-person interventions. This warrants the need to consider how telehealth services can be used to create a wider accessibility for caregivers, especially those in rural-dwelling areas. The current COVID-19 pandemic has allowed for a test of feasibility, with many services moving online and functioning just as well as they did in-person (Suntai et al., 2020). The pandemic has also revealed unique challenges that result from the multiple inequities that exist within the United States. In designing remote interventions to address caregiver burden among caregivers of TBI survivors, it is important to include the provision of well-maintained technological devices, high internet connectivity and training in the use of technology. As indicated in the finding by Carey et al., TBI caregivers who have prior use of technology are more likely to experience great improvements in caregiver burden outcomes after remote interventions while those without prior use of technology experience increased anxiety (2008). As such, remote interventions should also be designed to be easy-to-use, accompanied by high-efficiency devices and appropriate training. Limitations Several limitations exist within this study. The majority of articles employed one similar type of intervention, which resulted in limited variation of remote interventions. Some of the studies used extremely small sample sizes, which limits the overall generalizability of the results. Furthermore, not all the studies found that remote interventions were effective, therefore limiting the ability to make a more confident conclusion. And finally, while most of the studies did find improvements in caregiver burden outcomes, some articles only noticed those improvements across specific demographics and there were inconsistences in the effect of prior technology use. Conclusion This systematic review sought to determine the effectiveness of remote interventions in improving caregiver burden outcomes for caregivers of TBI survivors. The majority (83.3%) of the articles included reported improved caregiver burden outcomes after the implementation of remote interventions. These findings can be used to inform the development of telehealth programs to provide services for TBI caregivers experiencing barriers to in-person support, especially those in rural-dwelling areas. Further research is needed in order to identify a more varied range of remote interventions for this population. Conflicts of Interest: None Funding: This work was not supported by any grantReferencesAlbert, S. 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Concussion and Mild-Traumatic Brain Injury in Rural Settings: Epidemiology and Specific Health Care Considerations.?Journal of Neurosciences in Rural Practice,?11(1), 23–33. 1 PRISMA Flow Chart-571500-22860000PRISMA 2009 Flow Diagram3600450424053000357822532689800042291002983230Records excluded(n = 288)00Records excluded(n = 288)19081752983230Records screened(n = 325)00Records screened(n = 325)2743200252603000388620014973300013569951954530Records after duplicates removed(n= 325)00Records after duplicates removed(n= 325)42291003622040Full-text articles excluded, with reasons(n = 25)Did not include remote interventions Did not include caregivers of TBI survivors Did not measure caregiver burden outcomes00Full-text articles excluded, with reasons(n = 25)Did not include remote interventions Did not include caregivers of TBI survivors Did not measure caregiver burden outcomes274320045078652743200326961518859503764915Full-text articles assessed for eligibility(n = 37)00Full-text articles assessed for eligibility(n = 37)19081754973955Studies included in qualitative synthesis(n = 12)00Studies included in qualitative synthesis(n = 12)203835012788902914650526414Additional records identified through other sources(n = 0)00Additional records identified through other sources(n = 0)342900526415Records identified through database searching(n = 338)00Records identified through database searching(n = 338)-952817793432Identification00Identification-9537702394585Screening00Screening-9537703994785Eligibility00Eligibility-9572635598477Included00IncludedTable 1Study Results Table Study Methodology Sample Size and Composition Type of Remote Intervention Results Conclusion Albert et al., 2002Quantitative72 caregivers of adult brain injury survivors Social work liaison with telephone interactionsCaregivers experienced less burden, greater caregiving satisfaction and greater overall quality of lifeRemote interventions are effective Brown et al., 1999Quasi-Experimental 91 caregivers of an adult brain injury survivor Telephone support group Participants in both the telephone group and the in-person comparison group had improved outcomesRemote interventions are as effective as in-personCarey et al., 2008Quantitative 150 family members of brain injury survivors aged 5 to 16Online family problem-solving intervention and an internet resource group Participants in the online problem-solving intervention had improved overall caregiving functioning. Participants with prior technology use had improved outcomes compared to those without. Some remote interventions are effective and having prior experience with technology results in greater improvements Damianakis et al., 2016Mixed Methods10 caregivers of a brain injury survivor aged 17-25Web-based video support groupParticipants reported satisfaction with having a virtual support group Remote interventions are effectiveMcDonald et al., 2019Quantitative 5 caregivers of adult brain injury survivors Online psychoeducation treatment program Participants did not have any improved outcomesRemote interventions are not effective McLaughlin et al., 2013Randomized-Controlled Trial 201 family members of brain injury survivors Interactive multimedia intervention to teach advocacy skillsCaregiver knowledge and skill were improved, but not life satisfaction Remote interventions are effective for knowledge and skill but not reducing burden Petranovich et al., 2015Randomized-Controlled Trial 132 family members of adolescent brain injury survivors Online counselor-assisted problem-solving intervention and internet resource comparisonLower-income caregivers experienced reduced psychological distress Remote interventions are effective, particularly for lower income families Raj et al., 2015Randomized-Controlled Trial 37 caregivers of pediatric brain injury survivors aged 3 to 9Online parent training programLower-income caregivers experienced reduced psychological distress Remote interventions are effective, particularly for lower income familiesRotundi et al., 2005Mixed Methods19 female significant others of male brain injury survivors Website support intervention with support groups, discussion board and information modulesFemale caregivers found the online support group part of the website particularly helpfulRemote interventions are effective, particularly online support groups Wade & Wolf, 2006Quantitative 40 families of pediatric brain injury survivors Online problem-solving intervention and internet resourcesParents in the problem-solving group reported less depression, anxiety and overall psychiatric symptoms at follow-upRemote interventions are effective, particularly online problem solving Wade et al., 2012Randomized-Controlled Trial 41 family members of adolescents aged 11-18Online problem-solving intervention and internet resourcesParticipants in both groups of interventions reported high satisfaction Remote interventions are effective Wade et al., 2014Randomized-Controlled Trial 132 family members of brain injury survivors aged 12 to 17Online counselor-assisted problem-solving intervention and internet resource comparisonParticipants with limited prior computer use had better outcomes than those with prior computer useRemote interventions are effective, especially for those with no prior computer use experience ................
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