Parental Coping Research Articles

Pilot Test of the Maximizing Adolescent Post-Secondary Success (MAPSS) Intervention: Supporting Parents of Autistic Youth.

Parents play an essential role in the transition to adulthood for autistic youth, yet often feel they do not have adequate training and resources. To evaluate data on the preliminary efficacy of and collect participant feedback about the Maximizing Adolescent Post-Secondary Success (MAPSS) intervention. Single-group, pretest-posttest pilot study. Clinic. Twenty-two families of autistic youth (ages 13-19 yr, 72.7% male). MAPSS is a group intervention for parent-youth dyads that is designed to guide parents in facilitating the development of independent skills for adulthood. Outcomes and Measures: Measures included the Transition Preparation Activities Measure (T-PAM), Family Empowerment Scale (FES), 10-item Perceived Stress Scale (PSS-10), Adulthood Expectations Questionnaire (AEQ), Adaptive Behavior Assessment System-Third Edition (ABAS-3), and a study-specific participant feedback survey. Frequency of transition preparation activities (T-PAM) significantly increased from before to after the intervention, and although the frequency of preparation activities decreased by 1-mo follow-up, it remained significantly higher than at baseline. Parent self-efficacy (FES), parent expectations (AEQ), and parent sense of control over outcomes (AEQ) also significantly increased from preintervention to follow-up; however, parent coping (PSS-10) was unchanged. Youth self-care skills (ABAS-3) demonstrated improvements 6 mo after the completion of the intervention, although other areas of adaptive behavior did not significantly change. Feedback from parents suggested they had positive experiences and felt the intervention was beneficial. Our data suggest that the MAPSS intervention is an appropriate candidate for larger, controlled clinical trials. What This Article Adds: With additional evidence, this intervention can offer guidelines for occupational therapists to work with autistic youth and their parents to prepare for adulthood.

Association of psychological distress and religious coping tendencies in parents of children recently diagnosed with cancer: A cross-sectional study.

Parents of children with cancer exhibit high levels of psychological distress. Parents of children with serious illness report religion and spirituality are important coping resources. We sought to describe characteristics of religion, religious coping, social support, and resiliency in parents of children newly diagnosed with cancer and examine associations between psychological distress and self-reported religious coping, religiosity, resiliency, and social support. Cross-sectional observational study of 100 parents of 81 unique children recently diagnosed with cancer. Parents provided demographic information and completed measures of psychological distress, importance of religion, religious coping, resiliency, and social support. Patients' type of tumor and intensity of treatment were collected by medical record abstraction. Compared to nationally reported data for adults, parents of children with cancer reported high scores for psychological distress but similar levels of religiosity, religious coping, and resiliency. Negative religious coping (feelings of negativity related to the divine) was associated with higher levels of psychological distress. This effect was most prominent in parents who reported the highest levels of religiosity. Positive religious coping, religiosity, and social support were not associated with levels of psychological distress. Findings confirm high levels of distress for parents of children with cancer. Negative religious coping was associated with higher levels of psychological distress but positive religious coping, religiosity, and other coping factors were not found to be significantly associated with distress. Further assessment of negative religious coping to inform interventions to promote resiliency is warranted as they may impact parental decision-making and care.

Association of Child and Family Attributes With Outcomes in Children With Autism

The prevalence and attributes of positive outcomes (or doing well) among children with autism spectrum disorder (ASD) in midchildhood are not well known. To estimate the prevalence of doing well according to metrics of proficiency and growth and to investigate the extent to which significant associations exist between child- and family-level variables and doing well. This longitudinal cohort study included children with ASD from regional clinics across Canada. Participants were sampled 3 times between ages 2 and 4.9 years (T1) and twice in follow-up into middle childhood (T2). Data were analyzed March 2018 through January 2020. Language and IQ assessments at first sample; household income, parent coping, and family functioning. Key outcome domains of developmental health included measures of socialization, communication, independent living skills, and measures of internalizing and externalizing behaviors. Thresholds for doing well in these domains by either proficiency or growth were established. The extent to which language, IQ, household income, parent coping, and family functioning were associated with assessed outcomes was determined by logistic regression. The association between outcomes and concurrent Autism Diagnostic Observation Schedule (ADOS) classification scores was also estimated. In a total cohort of 272 children (234 [86.0%] boys; mean [SD] age, 10.76 [0.26] years), approximately 78.8% (95% CI, 73.2%-84.4%) of the sample were estimated to be doing well by either metric on at least 1 domain, and 23.6% (95% CI, 17.7%-29.4%) were doing well in 4 or 5 domains. It was possible to be doing well by either proficiency or growth and still meet ADOS criteria for ASD. For the growth metric, between 61.5% (95% CI, 40.7%-79.1%) and 79.6% (95% CI, 66.0%-88.9%) of participants had ADOS scores of 4 or greater; for the proficiency metric, between 63.8% (95% CI, 48.4%-76.9%) and 75.8% (95% CI, 63.0%-85.4%) had scores of 4 or greater. Doing well by either metric for all domains was associated with T1 scores on that outcome domain (eg, T1 daily living skills associated with doing well at T2 daily living by the proficiency metric as measured by the Vineland Adaptive Behavior Scales-Second Edition daily living skills scale [202 participants]: β = 0.07; OR, 1.07; 95% CI, 1.03-1.11; P < .001). Doing well in socialization by the growth metric was also associated with better T1 language skills scores (202 participants) (β = 0.04; OR, 1.04; 95% CI, 1.00-1.07, P = .04). Doing well in externalizing by the growth metric was also associated with higher household income at T1 (178 participants) (β = 0.10; OR, 1.10; 95% CI, 1.06-1.15; P < .001). Better family functioning at T1 was associated with doing well on both socialization and externalizing by proficiency metric and on internalizing by growth metric (socialization by proficiency [202 participants]: β = -1.01; OR, 0.36; 95% CI, 0.14-0.93; P = .04; externalizing by proficiency [178 participants]: β = 1.00; OR, 0.37; 95% CI, 0.16-0.82; P = .02; internalizing by growth [178 participants]: β = -1.03; OR, 0.36; 95% CI, 0.16-0.79; P = .01). This cohort study found that a substantial proportion of children with ASD were doing well by middle childhood in at least 1 key domain of developmental health, and that doing well was possible even in the context of continuing to meet criteria for ASD. These results support a strengths-based approach to treatment planning that should include robust support for families to increase the potential likelihood of doing well later in life.

Pediatric Education Discharge Support Strategies for Newly Diagnosed Children With Cancer.

BackgroundDischarge education practices vary among institutions and lack a standardized approach for newly diagnosed pediatric oncology patients and their parents.ObjectiveThe purpose of this American Nurses Credentialing Center–supported pediatric multisite trial was to determine the feasibility and effectiveness of 2 nurse-led Parent Education Discharge Support Strategies (PEDSS) for families with a child who is newly diagnosed with cancer.Interventions/MethodsA cluster randomized clinical trial design assigned 16 Magnet-designated sites to a symptom management PEDSS intervention or parent support and coping PEDSS intervention. Outcome measures evaluated at baseline, 1, and 2 months after diagnosis include symptom experiences, parent perceptions of care, unplanned service utilization, and parent evaluation of the PEDSS interventions.ResultsThere were 283 newly diagnosed children and their parent participating in this study. Linear mixed models revealed pain differed over time by the intervention; children in the symptom management group had a greater decrease in pain. Greater nausea and appetite disturbances were experienced by older children in both groups. Fatigue and sleep disturbance showed a significant decrease over time in both groups. The symptom management group reported significantly greater satisfaction with the PEDSS intervention.ConclusionsThis study is among the first to examine the effects of 2 different early-discharge planning strategies for families of a newly diagnosed child with cancer. The evidence supports a standardized discharge education strategy that can be successfully implemented across institutions.Implications for PracticeNurses play a major role in the educational preparation and discharge of newly diagnosed pediatric cancer patients and their families.

The experiences of mothers of children and young people with intellectual disabilities during the first COVID-19 lockdown period.

BackgroundRecent COVID‐19 lockdown restrictions resulted in reduced access to educational, professional and social support systems for children with intellectual disabilities and their carers.AimThe aim of this study was to gain insight into the ways mothers of children with intellectual disabilities coped during the first 2020 lockdown period.MethodsEight mothers of children with intellectual disabilities were interviewed. The recordings of these interviews were subjected to a thematic analysis.ResultsThree main themes were identified: carrying the burden; a time of stress; and embracing change and looking to the future.ConclusionsAll mothers experienced increased burden and stress. However, some also described some positive impact of lockdown conditions on them as well as on their child's well‐being and behaviour. These findings are discussed in the light of the (Journal of Applied Research in Intellectual Disabilities, 33, 2020, 1523) survey results on parental coping and suggestions for future service provision during pandemic conditions are proposed.

Left-behind children's social adjustment and relationship with parental coping with children's negative emotions during the COVID-19 pandemic in China.

Using data collected from two provinces in China through an online survey, the current study aimed to investigate left‐behind children's emotional and academic adjustment during the COVID‐19 pandemic in China. The participants included 1780 left‐behind (960 boys) and 1500 non‐left‐behind (811 boys) children in elementary and junior high school with a mean age of 11.23. Self‐reported questionnaires concerning children's depression, loneliness, anxiety, and academic adjustment, and parents' coping with children's negative emotions were completed. The results suggested that compared with non‐left‐behind children, left‐behind children's depression and anxiety symptoms were more severe and their academic adjustment was poorer. However, left‐behind children had lower levels of loneliness than non‐left‐behind children. Additionally, supportive coping types, especially emotion‐focused and problem‐focused reactions, were significantly negatively correlated with children's depression and anxiety. Unsupportive coping types, especially distress and punitive reactions, were significantly positively correlated with children's depression and anxiety symptoms. Moreover, the relationships between punitive reactions and depression, ignoring and loneliness and problem‐focused reactions and academic adjustment were significantly stronger in left‐behind children. Hence, during the pandemic, left‐behind children were still at a disadvantage even with their parents' company. However, parents' coping style towards left‐behind children's negative emotions played a significant role in their adjustment.

Application of a non-pharmacological technique in addition to the pharmacological protocol for the management of children's preoperative anxiety: A 10 years' experience.

The aim of the study was to investigate how Non- Pharmacological Techniques (NPT), in addition to standard pharmacological techniques, can help to manage and reduce the preoperative anxiety of children waiting for Day Surgery procedures (DS). Isola Serena activity started in 2008 to manage the preoperative time of children waiting for surgery in the playing room. The latter is run by a pedagogist. NPT includes use of games and toys, readings and drawings. A descriptive and comparative study was conducted on 50 children, aged 4 to 12 years, randomly assigned to Isola Serena group ISG and control group CG. All children received standard pharmacological techniques, while those of the ISG also received the NPT. The evaluation of the preoperative anxiety level (modified Yale Preoperative Anxiety Scale) and parent's coping style (Coping Inventory for Stressful Situation) compared the two groups. The ISG showed a significantly lower level of preoperative anxiety than the CG. Parents' coping style was not related to the preoperative anxiety. The activity performed in the Isola Serena Project resulted to be effective for the reduction of preoperative anxiety in children undergoing DS procedures.

The association between parent stress, coping and mental health, and neurodevelopmental outcomes of infants with congenital heart disease

Caring for the complex needs of a child with congenital heart disease (CHD) can place significant burden on the family. Parent mental health and coping have important influences on resilience and neurodevelopmental outcomes in children with CHD. Objectives: To describe the uptake of a cardiac neurodevelopmental program (CNP), examine parent mental health and coping specific to parenting a child with CHD, and explore the relationship between parent mental health and child neurodevelopmental outcomes. Method: Implementation and uptake of the CNP was examined, and forty-four parents of children with CHD completed the DASS and RSQ-CHD. Results: The CNP showed significant uptake in follow-up and interventions offered including 100% completed brain MRIs of eligible patients, 35% increase in neonatal neurology consults, and 100% of families counselled on neurodevelopmental outcomes. A significant proportion of parents endorsed moderate/severe levels of anxiety (25%), depression (20%), and CHD-specific stress. Parents predominantly engaged in secondary control engagement coping (F(2,64)=75.04, p<.001, ηp 2=.70). Secondary control engagement coping was associated with lower parent total stress (r=–.48, p=.006) and anxiety (r=–.47, p=.009). Higher parent stress was associated with higher anxiety (r=.45, p=.016), depression (r=.37, p=.05), more severe types of CHD (r=.35, p=.048), older child age (t(30)= –2.33, p=.03), and lower child cognitive scores (r=–.37, p=.045). More severe types of CHD were associated with lower language scores (F(3,35)=3.50, p=.03). Conclusions: This study highlights the relationship between parent mental health and early child cognitive outcomes in CHD and helps inform models of psychological care to reduce family burden and improve child outcomes.

Observed Maternal Coping Socialization and Child Internalizing Symptoms: The Roles of Maternal Depressive Symptoms and Peer Stress.

Empirical evidence relying primarily on questionnaire reports indicates parent coping socialization messages play an important role in children's psychological functioning. The present study utilized a multi-informant, multi-method design to build on previous coping socialization research in childhood and adolescence. A novel coding system was developed to measure observed parental socialization of coping messages from observations of a discussion-based peer stress task. Questionnaires and direct observations were obtained from mothers with and without a history of depression (N = 116; 50% with a history of depression) and their children (9 to 15years). Observed maternal coping socialization messages were not significantly correlated with mother or child reports of child internalizing symptoms in bivariate analyses. However, in multiple linear regression analyses, current maternal depressive symptoms and children's level of peer stress emerged as significant moderators of the association between observed maternal coping socialization messages and children's internalizing symptoms. The conceptual and methodological contributions of the current study are discussed, limitations and strengths are noted, and implications for future research are outlined.

Parenting as a full time job: The experience of secular middle-class Jewish parents of transgender emerging adults in Israel

Background Emerging adulthood is a developmental period that encompasses individuals from their late teens through at least their mid-twenties, causing parents to be engaged in “parenting” activities longer than in the past. The present study aims to explore the parenting experience and its ascribed meaning among parents of trans emerging adults in Israel. Method Perceptions and perspectives of 18 Israeli parents of trans emerging adults regarding their parenting experiences were explored using in-depth, semi-structured interviews. All interviews were audiotaped, fully transcribed verbatim, and thematically analyzed. Results Analysis of the interviews yielded three main themes. The first pertains to parental worries; the second pertains to parental support practices, including accompanying and supporting their child in different arenas and serving as their companions and advocates; and the third pertains to parental coping skills. Conclusion Participants portrayed the parenting of trans emerging adults as a demanding, challenging, and complex experience which they described as a “full time job.” Their parenting experiences revolved around the tension between responding to the special needs of their trans children by helping them navigate this period of experimentation and exploration, and the need to give them autonomy and help them develop the independence they want and need. This tension should be understood in light of the specific situation and the stage of the child’s transition, the parent-child relationship, and the family situation, in addition to the wider societal context, which is often hostile and transphobic.

Dyadic Coping, Parental Warmth, and Adolescent Externalizing Behavior in Four Countries.

This study examined parental warmth as a mediator of relations between mothers' and fathers' perceptions of dyadic coping and adolescent externalizing outcomes. Data from 472 adolescents, mothers, and fathers were collected over a three-year period from families in China, Kenya, Sweden, and Thailand. For mothers in all four sites and fathers in three sites, better parental dyadic coping at youth age 13 predicted higher levels of parental warmth at youth age 14. For mothers in all four sites, higher levels of maternal warmth were in turn related to less youth externalizing behavior at age 15, and higher levels of dyadic coping at youth age 13 were related to less youth externalizing behavior at age 15 indirectly through maternal warmth. Emotional Security Theory helps explain the process by which dyadic coping is related to adolescent externalizing behavior. The results have important implications for parent and family-based interventions.

Emotion‐oriented coping and parental competency: An evidence‐based parenting intervention for parents of children with special educational needs

AbstractThis study examines a promising new coping and parental competency (CPC) intervention for parents of children with special educational needs that targets parents' mental health outcomes. Coping and parental competency impact parents' mental health, but no studies have rigorously assessed whether CPC is an effective strategy for cultivating emotional wellness in these parents. A seven‐week skills‐based CPC parenting programme was developed and administered in groups. One hundred twenty‐four parents in Hong Kong were randomly assigned to the intervention group or the wait‐list control group. Parents in the intervention group (a) showed reductions in depression, anxiety, and stress, (b) used fewer emotion‐oriented coping strategies and (c) exhibited an increased sense of parenting competency compared to the wait‐list control group. The serial multiple mediation of emotion‐oriented coping and parental competence in the relationship between treatment condition and mental health outcomes was found to be statistically significant. The discussion highlights the potential usefulness of a CPC intervention for populations at risk for parenting and coping challenges.

“It Takes a Village”: Factors Related to Coping in Families Raising Children with Disabilities

In this paper, the author argues that caregiver coping in raising children with disabilities extends to include not only the parents but the rest of the family system as well. Adjustment, social and emotional support, resiliency and adaptability, and flexibility are examined by the author as specific factors contributing to successful coping of parents, siblings, and grandparents in raising children with disabilities. A critical literature review by the author discusses the current state of knowledge in this area and explores themes of research in each of the categories described. The author discusses conflicting interpretations of prominent caregiver coping research by Mattingly and Ingstad, and concludes with a discussion of global perspectives on this issue and recommendations of further research to contribute to understandings of coping in family systems raising children with disabilities. Implications of this research relate to improving clinical practice, service provision, and public policy development on this topic.

A pilot study of the effect of a home-based multimodal symptom-management program in children and adolescents undergoing chemotherapy.

BackgroundPrevalent symptoms that affect children and adolescents throughout the process of cancer diagnosis and treatment include nausea and vomiting, fatigue, pain, mucositis, and anxiety.AimTo examine the effect of a home‐based multimodal symptom‐management program for alleviation of nausea and vomiting, fatigue, pain, mucositis, and anxiety in children and adolescents undergoing chemotherapy for hematological malignancies or solid tumors.MethodsIn an exploratory pilot randomized study with qualitative interview, patients between 10 and 18 years of age were randomly assigned to either the symptom‐management program plus usual care (intervention group) or usual care (control group). The program consisted of multiple nonpharmacological interventional components. The targeted symptoms were measured at baseline (after diagnosis), at the first 2 weeks of each cycle of chemotherapy, and at 6 months after baseline, using the Memorial Symptom Assessment Scale 10‐18 and the State Anxiety Scale for Children.ResultsFifty children (31 boys; mean age, 13.7 years) were randomized either to the intervention group or the control group (25 each) and underwent baseline assessment. A comparison between the groups showed that the intervention group had a significant less fatigue over time (P < .05). However, no differences were found with respect to nausea and vomiting, pain, mucositis, and anxiety between groups. Both children and parents reported a positive experience with the symptom‐management program.ConclusionThe home‐based symptom‐management program may have helped to reduce fatigue in children and adolescents undergoing chemotherapy. In addition, qualitative data support the importance of improving children and parents' knowledge, coping skills, and psychological preparation for symptoms associated with chemotherapy.

Goal Setting and Fear of Failure among Indigent Adolescents

Goal setting is the action plan designed by an individual to achieve his/her goals while fear of failure is a motive to avoid failure in most of evaluative situations based on anticipatory shame upon failure of the person in concern. This study aims at finding correlation between goal setting and fear of failure among indigent adolescents of Kalina, Mumbai. For this, the sample size of 87 indigent students was taken among which 53 were females and 34 were males. Goal Setting Formative Questionnaire by Gaumer Erickson, A.S. &amp; Noonan, P.M (2018) and Performance Failure Appraisal Inventory (PFAI) by David E. Conray, Ph.D. were used, which has high reliability. Exploratory research design was used for the study and this study gives further scope for parents, counselors, educational sectors and social workers to give needful opportunities to indigent population and to acknowledge their levels of Goal setting and reduce fear of failure.

‘More than a box of puzzles’: Understanding the parental experience of having a child with a rare genetic condition"

BackgroundChromosomal microarray (CMA) testing has been adopted as the first-tier diagnostic test for developmental disabilities. However, determining the clinical significance of the results is often complex. This qualitative study seeks to explore parental interpretation, adaption and coping in the context of ambiguous rare genetic findings in order to support parental adjustment and wellbeing. MethodsIn-depth interviews were conducted with parents (n = 30) of children identified with a rare genetic chromosomal abnormality. ResultsThree major themes were identified following a thematic analysis: ‘Learning of the Genetic Diagnosis', “The Reality of the Rarity’ and ‘Beyond Genetics: The Child Takes Centre Stage’. Findings demonstrated that parental adjustment to their child's genetic results are mediated by several factors including child difficulties and stage of development, clinician communication, perception of genetics, intrinsic coping strategies, access to practical and emotional support as well as broader contextual experiences. ConclusionThis study highlights the importance of considering the parental perspective in the context of genetic testing in clinical practice.

Learning in the shadows: parents’ investments, family burden, and students’ workload in Dhaka, Bangladesh

Privatization, marketization, investment, and competition of education have become a global phenomenon with significant implications. While research on demand and patterns of shadow education are increasingly available across the world, very little is known about the scope of parents’ investments, family burden, and students’ workload. This paper focuses on shadow education in Dhaka, Bangladesh. Shadow education is defined as fee-based private supplementary tutoring that replicates the official school system. The study conducted on shadow education uses an explanatory sequential mixed methods design with quantitative data from questionnaires of 354 participants, involving students and parents, and qualitative data from interviews of 24 participants, including students, parents, and teachers. The aim of this paper is to examine how parents’ investments in their children’s private tutoring create high expectations and competition that bring financial burden to families in a disadvantaged society. It addresses the experiences of students’ workloads due to extra lessons of several subjects in a day, exam preparation pressure, and parents’ and peer pressures in the desire not to lag behind. It shows how students deal with time shortages for workloads from extra lessons and deprive themselves of sports and social activities, which are part and parcel of being a mentally, emotionally, and physically healthy human being. The study draws on the theories of educational privatization, competition, investment, and capability approach, which are then associated with the research contexts of this paper.

The Experiences of Parent Dyads in the Neonatal Intensive Care Unit: A Qualitative Description

BackgroundThe hospitalization of an infant in the neonatal intensive care unit (NICU) is a distressing and often unexpected event for parents. Parents have risk for depression, anxiety, and posttraumatic stress, which can adversely impact them and their relationship. The hospitalization and subsequent stress may affect parents' capability to connect with and parent their child.PurposeDescribe parents' experiences and ability to cope with the NICU; identify experiential and coping differences between mothers and fathers; examine the effect of the NICU hospitalization on the parent dyad relationship.MethodsA qualitative descriptive design with dyadic interviews examined parents' experiences and coping skills, and subsequent effects on the parental relationship. Data collection continued until saturation was achieved and no new themes emerged. Through content analysis, an accurate description of parents' experiences in the NICU was rendered.FindingsNine themes from eight dyad interviews emerged and were categorized within the six domains of the transactional theory of stress and coping. The major themes were: Deeply Distressing, Unexpected and Unprepared, Expecting to Hear and Be Heard, Becoming Parents, Stronger Together, Support is Key, Parents Want Better Communication, and Adjusting to the NICU.Implications for practiceSupport from professionals and family, and clear and consistent communication from the treatment team helped alleviate parents' anxiety about their infant.Implications for researchResearch regarding the impact of a NICU hospitalization on the relationship between parent dyad members, specifically longitudinal studies, may lead to a better understanding of the long-term effects of this specific stressor on parents.

Multisite longitudinal efficacy trial of a disclosure intervention (TRACK) for HIV+ mothers.

The Teaching, Raising, And Communicating with Kids (TRACK) study was a full-scale longitudinal efficacy trial of a previously successful pilot intervention, which aims to assist mothers living with HIV (MLH) with serostatus disclosure to their children. The study looked to test the key components of the theoretical model with a more diverse sample than that of the pilot. MLH (mean age = 39.27, SD 7.89) and their children (6-14 years) were recruited in Southern California and Atlanta and randomized to an intervention or wait-list control group (N = 176 dyads). TRACK used behavioral exercises within three individual sessions, with assessments at baseline, 3-, 9-, and 15-month follow-ups regarding HIV disclosure, targeted intermediate variables (communication, parental coping, family routines, and disclosure self-efficacy), and outcome variables for MLH's health and mental health, children's mental health, and family relationships/functioning. TRACK MLH were four times more likely to disclose their HIV serostatus than controls, with the rate increasing to six times more likely applying generalized estimating equation (GEE) logistic regression. Intervention MLH showed improvements in communication, social support, family routines, and most significantly, disclosure self-efficacy. Intervention MLH demonstrated decreased anxiety and better mental health scores; their children reported significantly more decline in worry than controls. This full-scale trial, over and above the pilot, showed the intervention improved outcomes across multiple sites, and found all targeted intermediate variables improved in the intervention group relative to the control group. TRACK helped mothers to disclose their status to their children and improved mental health outcomes, especially anxiety. (PsycInfo Database Record (c) 2021 APA, all rights reserved).

Development and Initial Validation of a Food Allergy Associated Parental Anxiety Screening Tool: IMPAACT

When faced with the uncertainty of potential allergen exposure and anaphylaxis, anxiety about the management of a child’s food allergy (FA) is adaptive. Parental FA-associated anxiety (PFAA) is prevalent and impacts parent, child and family functioning. Understanding normative PFAA has important implications for identifying families who may benefit from psychosocial support for FA management. We developed and validated a screening tool (Impairment Measure for Parental food Allergy-related Anxiety and Coping Tool, IMPAACT) to assess impairment caused by PFAA. The preliminary IMPAACT questionnaire was developed using inductive and deductive approaches to item generation with clinician and parent feedback. The screening tool and measures of parental burden (FAQL-PB) and generalized anxiety (STAI, GAD-7) were distributed online through Canadian food allergy advocacy groups. Factor and correlation analyses were used to examine the factor structure of IMPAACT and its relationship with related constructs. 296 parents completed the questionnaires. The 28-item measure demonstrated high internal consistency (α=.96). Factor analysis revealed a four-factor structure, addressing 1) FA-associated worries (cognitions), 2) behavioural avoidance and reassurance-seeking, 3) anxiety impact, and 4) child coping/anxiety, which together explained 67% of the total variance. IMPAACT scores were strongly correlated with FAQL-PB(r=0.79, p<.001) and weaker associations with STAI(r=.42, p<.001) and GAD-7(r=.37, p<.001). IMPAACT assesses the impact of FA-associated parental worries, behavioural avoidance and reassurance-seeking, and consequences for the family. Our psychometric evidence suggests that IMPAACT provides a reliable and valid measure of PFAA. Further studies are needed to evaluate its use as a longitudinal outcome measure and its validity in other FA-populations.