Thesis advisor: Penny Hauser-Cram / This study is a secondary data analysis of data from the Early Intervention Collaborative Study (EICS) (Hauser-Cram, Warfield, Shonkoff, & Krauss, 2001), a longitudinal investigation of families who have children with developmental disabilities (DD) (i.e. Down syndrome, motor impairment, and developmental delay). The study investigated a transactional relation between child problem behavior and parenting stress during the early (ages 3 to 5 years) and middle childhood (ages 5 to 10 years) years. Parental planful problem solving coping and positive reappraisal coping and the helpfulness of social support were examined as moderators of the relation between child problem behavior and parenting stress from the ages 3 to 5 years. Child problem behavior and parents' levels of stress, coping strategies, and ratings of social support were collected during home visits with the families when children were 3, 5, and 10 years. Using hierarchical regression techniques a transactional relation was found between child problem behavior and parenting stress from ages 3 to 5 years for both mother-child and father-child dyads. A transactional relation was again found between these constructs from ages 5 to 10 years for only mother-child dyads. Maternal positive reappraisal coping significantly moderated the relation between child problem behavior and maternal parenting stress. Maternal report of the helpfulness of social support significantly moderated the relation between child behavior and parenting stress at both the early and middle childhood levels. The findings support the design of familial interventions. Interventions that promote adaptive coping strategies may be particularly helpful for families of children with DD who exhibit high levels of problem behavior. Finally, improving the helpfulness of current support systems may positively impact parents' stress who have children with developmental disabilities. / Thesis (PhD) — Boston College, 2010. / Submitted to: Boston College. Lynch School of Education. / Discipline: Counseling, Developmental, and Educational Psychology.

BACKGROUND: Inflammatory Bowel Disease (IBD), including Crohn’s disease (CD) and ulcerative colitis (UC), are chronic inflammatory conditions of the bowel that display a rising prevalence in childhood and adolescence. The diagnosis of a chronic condition, such as IBD, in childhood can be overwhelming and stressful for both the patient and caregiver. Parents and family members can play a critical role in providing emotional support for children with newly diagnosed IBD. We hypothesized that dysfunctional patient and parental coping strategies would correlate with increased anxiety and depression in children, worsening clinical disease activity, and increased healthcare utilization. OBJECTIVE: The primary objective of the IBD Coping Study is to assess the stability of coping strategies and psychological stress over the first year following a new diagnosis of IBD. Secondarily, we aim to assess the impact of child and parental coping strategies on disease activity and emotional well-being over the year. METHODS: This is a prospective, longitudinal cohort study of children with newly diagnosed IBD and their parents at Boston Children's Hospital (BCH). Patients between the ages of 9 and 17 years old that have been diagnosed with CD, UC or Indeterminate colitis (IC) within the last 6 months, are English-speaking, and receive routine care at BCH are approached for participation in our study. Participation includes the completion of previously validated psychological metrics for both child and parent at baseline and then again 12 months later. Our instruments include the Children's Depression Inventory (CDI), the Screen for Child Anxiety Related Disorders (SCARED), the IMPACT-III Questionnaire, the Patient Health Questionnaire (PHQ-9), Healthcare Utilization Survey, Pediatric Inventory for Parents (PIP), and the Hospital Anxiety and Depression Scale (HADS). RESULTS: We screened 187 patients with IBD for participation in our study, and roughly 30% of them were eligible for recruitment. To date, we have enrolled a total of 30 patients. Of these patients, there was an equal distribution of male and female participants. The majority of patients were around 14 years of age at the time of IBD diagnosis with a greater number of patients with CD (17) currently represented. We are approaching patients on average about 1.5 months after their initial diagnosis. The baseline average Pediatric Ulcerative Colitis Activity Index (PUCAI) score was 21.15 ± 20.53, whereas the average Pediatric Crohn's Disease Activity Index (PCDAI) score was 3.75 ± 2.50. On CDI items, teenage girls and boys reported increased raw and standardized scores (Raw: 5.83 and 4.83, respectively; Standardized: 43.67 and 44.67, respectively) than their younger counterparts for depressive behaviors, including negative mood and interpersonal problems. Pediatric patients encountered as inpatients reported an overall lower quality of life on IMPACT-III items (103.29 ± 15.11) than those approached in the ambulatory setting (140.36 ± 7.50). On SCARED items, patients met criteria for the potential presence of one or more anxiety disorders. Inpatients also reported being bothered more frequently with respect to hindrances in their sleep, appetite, and daily routines on the PHQ-9 metric. Parents of children with newly diagnosed IBD rely on increased communication with their child's primary GI provider, and their scores reflected lower emotional functioning during an admission period when compared to scores reported during regular scheduled ambulatory visits. Scores collected from the HADS screen demonstrate that 6% and 33% of parents reported a score great enough to be considered a "borderline case" for depression and anxiety measures, respectively. Primary comparisons between child health assessments and parent healthcare utilization depicted concurrent elevations in the same child-parent pair at baseline. CONCLUSION: Our initial findings suggest a clear disparity between emotional stability in children and their parents in outpatient and inpatient settings following a new IBD diagnosis. Healthcare utilization by parents may be linked to adaptive or maladaptive coping, and continuation of our study will substantiate this prediction. In looking ahead, potential interventions may require approaches stratified by age, gender, and hospital setting. Our study supports the need for further investigations into the impact of targeted interventions that promote an improvement in overall quality of life in children with IBD and their family during the first year of post-diagnosis.

Rationale and Aims: Research into the lived experience of parenting children with muscular dystrophy has typically addressed key transitions along the disease trajectory, such as diagnosis or end-of-life care. Families reportedly face continuous challenges as their child's health deteriorates. No research has considered accounts of parenting across the lifespan that look at adaptation following their child's death. This research was conducted in the context of a wish-fulfilment charity that offer experiences for children to be supported in activities that are usually deemed inaccessible. In this context, the study asked how do parents who have lost a child to muscular dystrophy story their experiences of parenting. Methods: This research used a qualitative approach that explored the accounts of eight parents interviewed in couples, all of who had experienced the death of their child to muscular dystrophy. The study used a semi-structured interview, lasting from 100-150 minutes each. Interviews were video-recorded, transcribed, and analysed using narrative analysis to explore what and how the parents narrated their experiences. Consideration was given to the social and cultural contexts that shaped these. Analysis: Multiple readings of the transcripts allowed me to develop individual summaries and then construct an analysis across all of the accounts. Three main stories of change, survival and creating change emerged through my analysis. These three stories represented six sub-stories in total: waking up to different futures; being so close, you don't see the deterioration; humour through the struggle; storytelling together; creating a legacy; and living the dream. Findings: Couples narrated the loss of parental dreams, leading to the need for identity (re)formation. Humour and storytelling together were often used to regulate emotions during the storying telling, and a means of surviving their loss. Parents shared narratives of building legacies and the memories created through 'living the dream', which alluded to an impact that surpassed death itself. Implications: These findings suggest the need for greater consideration of sense-making, changing identities, and benefit-finding in clinical consultations, at key transitions during the parenting journey and particularly following the death of a child to muscular dystrophy. Accounts suggest that wish-fulfilment events can sustain hope for parents, a proposition that will need further investigation in the future.

Abundant research describes the prevalence of parenting stress among parents of children with disabilities. Children with disabilities requiring specialized instruction receive special education programming, but this factor can exacerbate stress in parents and interfere with positive mental health and family relationships. In school settings, intervention is directed at the student but fails to address the contextual day-to-day needs of parents experiencing greater stressors. There is scant evidence of the use or presence of structured, manualized intervention programs in schools to address the intense needs of parents of children with disabilities or of occupational therapy-led interventions on behalf of the parent as they emotionally process new special education programming territory. A strong sense of coherence (SOC) is important in positive parenting, health, and wellness. Low SOC has been associated with depression and stress and low parental coping capability. The SOC theory is valuable in explaining differences in individuals’ capacities to positively adapt to life challenges. A school-based, educational parent-intervention program, framed by a salutogenic SOC theory approach, which occurs during the school year, may prove useful to address parents’ diminished meaningful life occupations resulting from increased stress or lowered SOC. This inquiry aims to examine the relevance, need, and benefit of a school-based parental-intervention program for parents of children with disabilities, the Sense of Coherence Uplifting Parent Participation in Everyday Resilience (SUPPER) program. Its intended purpose is to provide a special-education-based, parent-support and -empowerment group for parents of children receiving special education programming and supports.

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