Interventions For Caregivers Of Children Research Articles

Fetal alcohol spectrum disorder: an exploratory telehealth pilot group intervention for caregivers

ABSTRACT The Family Foundations: Behavioral, Emotional, Social, and Team-Based [B.E.S.T.] program is a novel trauma-informed intervention for caregivers of children with Fetal Alcohol Spectrum Disorders (FASD) to address emotional, behavioral, and cognitive problems. Twenty-five caregivers participated in this exploratory pilot study and completed pre- and post-intervention questionnaires. There was a significant decrease in child externalizing behavioral problems and total problems (p < .01). There was a significant decrease in caregiver stress (p < .01) and an increase in self-reported parenting confidence (p < .01). Mixed results were obtained for change in child social functioning. Further evaluation with a control group and larger sample size is needed to further assess the effectiveness of the program.

Enhancing caregivers self-management for their children who require medical technology: A feasibility study for the COPE-STAR intervention

PurposeTo test feasibility of the Creating Opportunities for Personal Empowerment: Symptom and Technology Management Resources intervention for caregivers of children who require medical technologies of tracheostomies and feeding tubes. Design and methodsQuasi-experimental one group design with measures at baseline and at 4 weeks. Intervention feasibility was tested from August 2019–June 2021, including recruitment, retention, and adherence, and caregiver satisfaction. Caregiver and child characteristics and outcomes were assessed. ResultsCaregivers were enrolled (n = 22) and completed (n = 16) the study. Caregivers were primarily female (n = 21), were predominately Caucasian (n = 14, 64%) followed by African-American (n = 8, 36%), and Non-Hispanic/Latino (n = 18, 82%). Feasibility indicators of recruitment (92%), retention (73%), and adherence (100%) were satisfactory. Outcome measures of management of child's chronic condition, caregiver beliefs about managing their child's symptoms and medical technology, anxiety, and depressive symptoms remained stable. Caregivers agreed that the intervention was useful, easy to use, and acceptable, and had positive feedback. ConclusionsThis is a feasible and acceptable intervention. With further development and efficacy testing, the intervention has potential for use and expansion to a larger population of caregivers of children who require medical technology. Practice implicationsChildren who require medical technology have multiple complex chronic conditions and complex care needs at home. This intensive and focused care is provided by informal caregivers who need education and resources for their child's care. This intervention addressed caregiver management of common symptoms and medical technologies of children in the home setting.

Telehealth as a Psychological Intervention for Caregivers of Children with Neurodevelopmental Disorders: A Systematic Review with Effect Sizes

Telehealth as a Psychological Intervention for Caregivers of Children with Neurodevelopmental Disorders: A Systematic Review with Effect Sizes

Teachers' needs for an FASD‐informed resource: A qualitative interview needs assessment based on the ADAPT‐ITT framework

AbstractFetal alcohol spectrum disorders (FASD) represent a wide range of neurodevelopmental differences associated with prenatal alcohol exposure and are highly prevalent. The current study represents the initial stages in adapting the Families Moving Forward (FMF) Program, an evidence‐based behavioral consultation intervention for caregivers of children with FASD, to a website for teachers. Aims were to understand teachers' needs and preferences for an FASD‐informed intervention website and to assess the goodness of fit of the FMF Program to teachers and the school setting. Twenty‐three teachers with experience teaching students with FASD were interviewed. Interviews were conducted via Zoom and lasted about 53 min on average. Data were transcribed verbatim and analyzed using qualitative content analysis in Dedoose. Three overarching themes represented teachers' needs for an FASD‐informed resource: teachers need evidence‐based FASD information and strategies, teachers have very little extra time, and the needs of special and general education teachers vary. Teachers were positive about the concepts of the FMF Program and felt they would have good fit. Teachers need an evidence‐based FASD‐informed intervention that is easy to use, concise, and responsive to varying needs and levels of experience. Results will inform the adaptation process of the FMF Program.

Anxiety, Depressive Symptoms, Health-Related Quality of Life, and Their Associated Factors Among Caregivers of Children With Cancer

Background A child’s cancer diagnosis and treatment are stressful for family caregivers, who may experience anxiety, depressive symptoms, and poor health-related quality of life (HRQoL) related to the care they provide. Objective This study assessed the prevalence of anxiety, depressive symptoms, HRQoL, and associated factors among caregivers of children with cancer. Methods A cross-sectional study was conducted on 167 caregivers of children with cancer in Malawi. A multivariate analysis was conducted to identify the determinants of anxiety, depressive symptoms, and HRQoL. Results All 167 caregivers who consented to participate in this study completed all the questionnaires. Severe anxiety and severe depressive symptoms accounted for 17.5% and 10.2%, respectively. Being Muslim (B = 7.800, P &lt; .001) and Pentecostal (B = 3.067, P = .023) by religious denominations was more likely to be anxious, whereas Catholic caregivers (B = 3.702, P = .033) were more likely to be depressed. Being unemployed was more likely to result in lower anxiety (B = −4.080, P = .016). Furthermore, caregivers demonstrated a lower mental health component (mean, 39.33 [SD, 6.35]), whereas being a female and aged between 31 and 40 years was more likely to result in better physical health (B = 3.962 [P = .031] and B = 3.415 [P = .020], respectively). Conclusion This study supports evidence that caregivers of children experience moderate and severe anxiety and depressive symptoms and poor HRQoL in Malawi. Implication for Practice Nurses need to include psychological interventions for caregivers of children with cancer during childcare.

Creating Opportunities for Personal Empowerment: Symptom and Technology Management Resources (COPE-STAR) Intervention for Caregivers of Children with Medical Technology

Creating Opportunities for Personal Empowerment: Symptom and Technology Management Resources (COPE-STAR) Intervention for Caregivers of Children with Medical Technology

Well-being focused interventions for caregivers of children with developmental disabilities: a scoping review protocol

IntroductionChildren with developmental disability (DD) may depend on their family caregivers to fulfil their complex health needs. Family caregivers are generally described as persons providing unpaid for services for the...

Feasibility and Acceptability of the Promoting Resilience in Stress Management-Parent (PRISM-P) Intervention for Caregivers of Children with Craniofacial Conditions.

Few evidence-based psychosocial programs exist within craniofacial care. This study (a) assessed feasibility and acceptability of the Promoting Resilience in Stress Management-Parent (PRISM-P) intervention among caregivers of children with craniofacial conditions and (b) described barriers and facilitators of caregiver resilience to inform program adaptation. In this single-arm cohort study, participants completed a baseline demographic questionnaire, the PRISM-P program, and an exit interview. Eligible individuals were English-speaking legal guardians of a child <12-years-old with a craniofacial condition. PRISM-P included 4 modules (stress-management, goal-setting, cognitive-restructuring, meaning-making) delivered in 2 one-on-one phone or videoconference sessions 1-2 weeks apart. Feasibility was defined as >70% program completion among enrolled participants; acceptability was defined as >70% willingness to recommend PRISM-P. Intervention feedback and caregiver-perceived barriers and facilitators of resilience were summarized qualitatively. Twenty caregivers were approached and 12 (60%) enrolled. The majority were mothers (67%) of a child <1-year-old diagnosed with a cleft lip and/or palate (83%) or craniofacial microsomia (17%). Of these, 8 (67%) completed PRISM-P and 7 (58%) completed interviews; 4 (33%) were lost-to-follow-up before PRISM-P and 1 (8%) before the interview. Feedback was highly positive, with 100% willing to recommend PRISM-P. Perceived barriers to resilience included uncertainty about their child's health; facilitators included social support, parental identity, knowledge, and control. PRISM-P was acceptable among caregivers of children with craniofacial conditions but not feasible based on program completion rates. Barriers and facilitators of resilience support the appropriateness of PRISM-P for this population and inform adaptation.

Linking Paradigms and Methodologies in a Qualitative Case Study Focused On Exploring the Operation of Power in Human Actions During the Design of a New Occupational Therapy Intervention

A research paradigm represents how a researcher views the nature of reality and guides how they engage in research to generate knowledge from that reality. Power is a construct that impacts on the individual actions of the researcher and the participants, and their interactions with each other, across a range of perspectives of reality. Qualitative researchers select different paradigmatic stances to represent how they consider and work with the influences of power on these human relations. This influences their decisions about which research design and methodology they select. Drawing on my doctoral study, which explored the process by which a group of occupational therapists designed an intervention for caregivers of children on anti-retroviral treatment living in low-income conditions in South Africa, I describe my process of selecting a poststructuralist paradigm, an instrumental case study design, and a co-operative inquiry methodology to illuminate the operation of power in the research process. An overview of the potential offerings and limitations of different paradigms, research designs and methods, as applied to this research example, are presented to support my assertions. In conclusion, I argue for the more consistent consideration and description of the interplay between paradigms, research design and methodology, to ensure the selection of the best suited combination to explore and describe the influences of power in the research process.

Core functions and forms of Bright IDEAS: A multi-methods evaluation of the adoption of an evidence-based psychosocial training program through iterative adaptation.

Despite efforts to widely disseminate interventions designed to increase access to quality supportive care to pediatric cancer patients and their families, many of these interventions fail to meet expectations once deployed in real-life clinical settings. This study identifies the functions and forms of Bright IDEAS: Problem-Solving Skills Training, an evidence based psychosocial intervention for caregivers of children recently diagnosed with cancer, to identify pragmatic program adaptations in its real-world clinical implementation. We compare intervention adoption before and after adaptations to the Bright IDEAS training program as part of a national training program designed to disseminate the intervention. 209 pediatric psychosocial oncology practitioners representing 134 unique institutions were trained during 10 in-person 8-hour workshops (2015-2019). Functions and forms of Bright IDEAS were identified, and adaptations made to the training agenda and curriculum based on practitioner feedback following implementation in local institutions. Mixed method evaluation included longitudinal surveys at 6- and 12-months post training; and qualitative interviews among a subgroup of practitioners (N = 47) to understand and compare perspectives on intervention adoption and barriers to implementation before and after adaptations to the Bright IDEAS training program. The RE-AIM framework was used to guide dissemination evaluation. A total of four adaptations were tailored to the identified forms of the intervention: case studies; pre-training reading materials; training videos; and letters of institutional support from primary supervisor. Pre- and post-training adaptations to the Bright IDEAS training program were mapped to RE-AIM constructs. Quantitative findings demonstrate that adaptations appeared to improve adoption and usage overall. This study provides insight into how contextual factors influence psychosocial practitioners' capacity to adopt, implement, and maintain Bright IDEAS in the clinical setting. This study demonstrates the use of real-time stakeholder feedback to guide intervention translation from research to practice settings.

Initial Feasibility of the "Families Moving Forward Connect" Mobile Health Intervention for Caregivers of Children With Fetal Alcohol Spectrum Disorders: Mixed Method Evaluation Within a Systematic User-Centered Design Approach.

BackgroundFetal alcohol spectrum disorders (FASD) are prevalent neurodevelopmental conditions. Significant barriers prevent family access to FASD-informed care. To improve accessibility, a scalable mobile health intervention for caregivers of children with FASD is under development. The app, called Families Moving Forward (FMF) Connect, is derived from the FMF Program, a parenting intervention tailored for FASD. FMF Connect has 5 components: Learning Modules, Family Forum, Library, Notebook, and Dashboard.ObjectiveThis study assesses the feasibility of FMF Connect intervention prototypes. This includes examining app usage data and evaluating user experience to guide further refinements.MethodsTwo rounds of beta-testing were conducted as part of a systematic approach to the development and evaluation of FMF Connect: (1) an iOS prototype was tested with 20 caregivers of children (aged 3-17 years) with FASD and 17 providers for the first round (April-May 2019) and (2) iOS and Android prototypes were tested with 25 caregivers and 1 provider for the second round (November-December 2019). After each 6-week trial, focus groups or individual interviews were completed. Usage analytics and thematic analysis were used to address feasibility objectives.ResultsAcross beta-test trials, 84% (38/45) of caregivers and 94% (17/18) of providers installed the FMF Connect app. Technological issues were tracked in real time with updates to address problems and expand app functionalities. On use days, caregivers averaged 20 minutes using the app; most of the time was spent watching videos in Learning Modules. Caregiver engagement with the Learning Modules varied across 5 usage pattern tiers. Overall, 67% (30/45) of caregivers posted at least once in the Family Forum. Interviews were completed by 26 caregivers and 16 providers. App evaluations generally did not differ according to usage pattern tier or demographic characteristics. Globally, app users were very positive, with 2.5 times more positive- than negative-coded segments across participants. Positive evaluations emphasized the benefits of accessible information and practical utility of the app. Informational and video content were described as especially valuable to caregivers. A number of affective and social benefits of the app were identified, aligning well with the caregivers’ stated motivators for app use. Negative evaluations of user experience generally emphasized technical and navigational aspects. Refinements were made on the basis of feedback during the first beta test, which were positively received during the second round. Participants offered many valuable recommendations for continuing app refinement, which is useful in improving user experience.ConclusionsThe results demonstrate that the FMF Connect intervention is acceptable and feasible for caregivers raising children with FASD. They will guide subsequent app refinement before large-scale randomized testing. This study used a systematic, user-centered design approach for app development and evaluation. The approach used here may illustrate a model that can broadly inform the development of mobile health and digital parenting interventions.

Improving knowledge and decreasing depressive symptoms in caregivers of children with asthma through the asthma academy: A randomized controlled trial.

Background: Caregivers of children with asthma demonstrate higher levels of anxious and depressive symptoms when compared to caregivers of healthy children. Objectives: The objectives of this study were to: 1) Evaluate feasibility and acceptability of two nurse-led, remotely offered interventions for caregivers of children with asthma; 2) Compare effectiveness of two interventions (a virtual education session and a virtual education session supplemented with a telehealth visit) in relation to caregiver outcomes, and 3) Assess the preliminary effect of the interventions on caregivers' knowledge of asthma, sleep, anxiety and depressive symptoms. Methods: A mixed methods approach was used inclusive of a qualitative, descriptive design and randomized controlled trial design. Caregivers were provided virtual education and telehealth visits and evaluated from pre-posttest. Results: The intervention was found to be feasible and acceptable. Both the virtual education session and telehealth visit were effective. The intervention had a significant effect on caregiver's asthma knowledge and depressive symptoms (p<.05), but did not affect caregiver's sleep or anxiety. Qualitative analysis of the virtual educational session revealed themes of 1) valuable learning experience, 2) more medication education needed, and 3) appreciated remote format. Qualitative analysis of the telehealth visits revealed themes of 1) educational, helpful, and worthwhile and 2) virtual offering was easy and convenient. Conclusions: Remotely conducted, nurse-led interventions such as virtual education sessions and telehealth visits are a feasible, acceptable, and effective way to improve caregiver outcomes.

Protocol for the Implementation and Evaluation of a Mindfulness-Based Intervention for Caregivers of Children with Mental Disorders in a Clinical Setting.

Being a parent is complicated in typical circumstances, with a great psychological impact as well as feelings and experiences of great intensity. This impact is greater in families in vulnerable situations, such as those with children with mental health problems, receiving treatment in a clinical setting. Due to these challenges, parenting in these circumstances is often accompanied by experiences of stress. An approach that has shown evidence of effectiveness in mitigating the negative impact of stress is mindfulness-based interventions, including the Mindfulness-Based Stress Reduction intervention program. The Mindfulness-Based Stress Reduction intervention program is designed as a psychoeducational, instructional, multimodal, and structured program whose main objective is to provide strategies for the management, coping, and awareness of stress in order to reduce it. In this paper, a protocol for the implementation and evaluation of the original Mindfulness-Based Stress Reduction intervention program with the added positive parenting component is presented, in order to systematize the incorporation of a parenting component in the Mindfulness-Based Stress Reduction intervention program, analyze its effectiveness for parents whose children have mental health problems (in terms of stress, mindfulness, emotional intelligence, general health, and parental role), explore the mechanisms of change operating in this intervention as perceived by the participants, and examine the application of acquired strategies to daily life.

Connection During COVID-19: Pilot Study of a Telehealth Group Parenting Intervention.

The COVID-19 pandemic has resulted in considerable stress for families, placing parents at risk for heightened psychological distress, while prompting widespread changes in mental health service delivery. This study evaluated treatment engagement, acceptability, and psychiatric distress among participants in the telehealth adaptation of the Connecting and Reflecting Experience (CARE) program after the onset of COVID-19. CARE is a transdiagnostic, bigenerational, mentalizing-focused group parenting intervention based out of an outpatient child mental health clinic in an underserved urban community. Individuals participating in CARE during the clinic's transition to telehealth services were recruited for participation in this pre-post design pilot study. Participants (N=12) completed self-report surveys before and after their first telehealth group session and at their 20-week follow-up. Quantitative and qualitative measures were used to evaluate psychiatric symptoms, treatment engagement, and preliminary acceptability of the adaptation. Self-reported mood and anxiety symptoms decreased significantly after 20 weeks of telehealth therapy. Participants reported high levels of therapeutic alliance and group cohesion in the telehealth format. Results also showed minimal participant-reported privacy concerns and a trend toward increased treatment engagement. These findings have implications regarding the acceptability of teletherapy interventions for caregivers of children during this period of heightened vulnerability and limited access to social support and health services. They also are relevant to establishing the preliminary acceptability of mentalizing-focused parenting inventions delivered via telehealth.

Tele-mental health intervention for caregivers of children on home ventilation: A randomized control trial.

This study aims to evaluate a Tele-P cognitive behavioural intervention (CBT) to promote the emotional functioning (i.e. reduce anxiety, depression and social isolation) and improve the quality of life (QoL) of caregivers of children who are ventilator dependent at home. There is an urgent need for support of parents with technology-dependent children. Research shows that the parents of children whose chronic illness require assisted-technology experience significant emotional stress, potential gaps in social isolation, and social isolation leading to lower quaility of life, unhealthy family functioning, and negative psychological consequences. Participation in a Tele-P intervention significantly reduced caregivers' anxiety, depression and fatigue, and reduction was sustained in a 4 week follow-up period. There was no significant change in social isolation. Findings demonstrate preliminary efficacy of an innovative Tele-P intervention on outcomes of anxiety, depression and fatigue in an at-risk group of caregivers. Although the intervention did not improve self-reported social isolation, using technology in combination with established psychological support is an efficient way to better equip our mental health intervention systems to serve vulnerable populations.

Pilot Evaluation of a Facebook Group Self-Care Intervention for Primary Caregivers of Children with Developmental Disabilities

Pilot Evaluation of a Facebook Group Self-Care Intervention for Primary Caregivers of Children with Developmental Disabilities

Use of the creating opportunities for parent empowerment programme to decrease mental health problems in Ugandan children surviving severe malaria: a randomized controlled trial

BackgroundSevere malaria is associated with long-term mental health problems in Ugandan children. This study investigated the effect of a behavioural intervention for caregivers of children admitted with severe malaria, on the children’s mental health outcomes 6 months after discharge.MethodsThis randomized controlled trial was conducted at Naguru Hospital in Kampala, Uganda from January 2018 to July 2019. Caregiver and child dyads were randomly assigned to either a psycho-educational arm providing information about hospital procedures during admission (control group), or to a behavioural arm providing information about the child’s possible emotions and behaviour during and after admission, and providing age appropriate games for the caregiver and child (intervention group). Pre- and post-intervention assessments for caregiver anxiety and depression (Hopkins Symptom Checklist) and child mental health problems (Strength and Difficulties Questionnaire and the Child Behaviour Checklist) were done during admission and 6 months after discharge, respectively. T-tests, analysis of covariance, Chi-Square, and generalized estimating equations were used to compare outcomes between the two treatment arms.ResultsThere were 120 caregiver-child dyads recruited at baseline with children aged 1.45 to 4.89 years (mean age 2.85 years, SD = 1.01). The intervention and control groups had similar sociodemographic, clinical and behavioural characteristics at baseline. Caregiver depression at baseline, mother’s education and female child were associated with behavioural problems in the child at baseline (p < 0.05). At 6 months follow-up, there was no difference in the frequency of behavioural problems between the groups (6.8% vs. 10% in intervention vs control groups, respectively, p = 0.72). Caregiver depression and anxiety scores between the treatment arms did not differ at 6 months follow-up.ConclusionThis behavioural intervention for caregivers and their children admitted with severe malaria had no effect on the child’s mental health outcomes at 6 months. Further studies need to develop interventions for mental health problems after severe malaria in children with longer follow-up time.Trail registration ClinicalTrials.gov Identifier: NCT03432039

Development and pilot implementation of an activity-based emotional support intervention for caregivers of children with cancer

Objective This study aimed to pilot PAX (“Play, Act & Interact”), an activity-based emotional support intervention for caregivers of child with cancer, which focuses on addressing their psychological distress and post-traumatic stress symptoms (PTSSs). Method Sixteen mothers whose children were child with cancer participated in this 4-week intervention. Their children (n = 16; 14 males; median age at diagnosis = 10.3 years; the median amount of time from diagnosis = 9 months) were at different treatment stages for a range of different diagnoses. Caregivers completed self-report instruments assessing their psychological distress including PTSSs and family functioning before and after the intervention and a brief open-response exit survey. Paired sample t-tests were computed to compare the pre-and post-intervention scores. Results The Post-traumatic Stress Disorder Checklist scores significantly decreased from pre- (M = 37.00, SD = 14.75) to post-intervention (M = 32.56, SD = 15.52), t(15) = 4.25, p < .001. There was also a significant difference between pre- (M = 33.5, SD = 3.18) and post-intervention (M = 35.7, SD = 3.14) scores on the Family Adherence subscale of the Family Adaptability and Cohesion Evaluation Scales III, t(15) = −2.58, p = .02. Conclusions PAX was a promising intervention for supporting caregivers’ PTSSs and family adaptability. Future studies investigating the long-term effects and replicating the current study with more participants and a control group are needed.

A mixed-methods analysis examining child and family needs following early brain injury

Purpose:To understand child and family needs following TBI in early childhood, 22 caregivers of children who were hospitalized for a moderate to severe TBI between the ages of 0 and 4 within the past 10 years (M = 3.27 years; Range = 3 months to 8 years) participated in a needs assessment. Methods: Through a convergent study design, including focus groups (FG), key informant interviews (KII), and standardized questionnaires, caregivers discussed challenges and changes in their child’s behaviors and functioning in addition to resources that would be helpful post-injury. Standardized questionnaires assessing current psychological distress and parenting stress in addition to open-ended questions about their general experience were completed. Results: Results indicated some families continue to experience unresolved concerns relating to the child’s injury, caregiver wellbeing, and the family system after early TBI, including notable variation in caregiver reported psychological distress and parenting stress. Caregivers noted unmet needs post-injury, such as child behavior management and caregiver stress and coping. Conclusion: Early TBI can have a long-term impact on the child, caregivers, and family system. Addressing the needs of the whole family system in intervention and rehabilitation efforts may optimize outcomes following early TBI. Study results will inform intervention development to facilitate post-injury coping and positive parenting. IMPLICATIONS FOR REHABILITATION Early TBI can result in unmet needs that have a lingering impact on the child, caregiver, and family. Caregivers need information and resources that address their own distress and stressors related to changes in the child post-injury. Our study suggests that stress management and self-care skills are possible targets of intervention for caregivers of children who experienced an early TBI.

Interventions for caregivers of children with food allergy: A systematic review

Studies have identified that food allergy (FA) in children is related to poorer caregiver quality of life (QoL). However, it is unclear which interventions are most effective at improving outcomes for caregivers of children with FA. This review aimed to identify and determine the efficacy, acceptability and quality of interventions for caregivers of children with FA. A systematic search of four databases was conducted to identify studies evaluating any intervention that targeted well-being and support of caregivers of children with FA. Studies were not excluded based on design and were rated for quality using the Mixed Methods Appraisal Tool (MMAT) and the Cochrane risk of bias tool for randomized controlled trials (RCTs). Fifteen studies met the inclusion criteria: eight studies used a pre-test/post-test design, four studies used a post-test design, two studies used an RCT design, and one study used a case-control design. Seven studies were educational interventions, five were psychological interventions, and three involved peer/professional support. All interventions had high participant acceptability; some evidence for cognitive behavioural interventions in supporting mothers was observed. Educational interventions tended to be associated with improvements in FA knowledge. With the exception of three studies, most studies were assessed as poor or moderate in terms of quality. There is a paucity of high-quality research evaluating interventions to improve outcomes in parents of children with FA. Limited evidence suggests that cognitive behavioural interventions could benefit some mothers, but this has not been tested in other populations. Future research should use methodologically sound designs with validated outcome measures.