Deborah Friedman

Parent Functioning in Families of Preadolescents With Spina Bifida: Longitudinal Implications for Child Adjustment

The purpose of this study was to test a strength-of-association model regarding possible longitudinal and bidirectional associations between parent functioning and child adjustment in families of children with spina bifida (n = 68) and families of able-bodied children (n = 68). Parent functioning was assessed across 3 domains: parenting stress, individual psychosocial adjustment, and marital satisfaction. Child adjustment was indexed by teacher-reported internalizing and externalizing symptoms, self-reported depressive symptoms, and observed adaptive behavior. Findings revealed that all 3 parent functioning variables predicted child adjustment outcomes, and that such results were particularly strong for externalizing symptoms. Associations between parent functioning and child adjustment tended to be in the direction of parent to child and were similar across both groups. These findings have implications for potential interventions targeted at helping families manage the transition into early adolescence in families of children with spina bifida as well as families of healthy children.

Latino Caregivers' Beliefs about Asthma: Causes, Symptoms, and Practices

Background and objective. This study examined belief systems of Latino caregivers who have children with asthma from Puerto Rican and Dominican backgrounds who resided on the Island of PR and the Mainland. The goal of this study was to document similarities and differences in beliefs about the causes, symptoms, and treatments of asthma across two sites and two Latino ethnic sub-groups of children who remain the most at risk for asthma morbidity. Methods. Participants included 100 primary caregivers of a child with asthma; 50 caregivers from Island PR and 50 caregivers from mainland RI were interviewed (at each site; 25 caregivers were from Puerto Rican backgrounds and 25 caregivers were from Dominican backgrounds). The interview included an assessment of demographic information and beliefs about the causes and symptoms of asthma and asthma practices. Results Results indicated more similarities in beliefs about the causes and symptoms of asthma across site and ethnic group. The majority of differences were among beliefs about asthma practices by site and ethnic group. For example, a higher proportion of caregivers from Island PR, particularly those of Dominican descent, endorsed that a range of home and botanical remedies are effective for treating asthma. Conclusions. Results from this study point to several interesting directions for future research including larger samples of Latino caregivers with children who have asthma. A discussion of the importance of understanding cultural beliefs about asthma and asthma practices is also reviewed.

Trajectories of Psychosocial Adjustment in Adolescents with Spina Bifida: A 6-Year, Four-Wave Longitudinal Follow-up.

OBJECTIVE As a follow-up to an earlier cross-sectional study (Holmbeck et al., 2003), the current multimethod, multi-informant investigation examined individual growth in psychosocial adjustment across the adolescent transition in 2 samples: young adolescents with spina bifida (SB) and typically developing adolescents (N = 68 in both groups at Time 1). METHOD Growth curve modeling procedures were used to describe the developmental course of psychosocial adjustment across 4 waves of data collection from ages 8 to 15. Child gender was included in the models as a moderator of associations between illness status and adjustment trajectories. RESULTS AND CONCLUSIONS Findings revealed that preadolescent differences between groups were maintained for several adjustment variables, indicating that adolescents with SB have enduring academic and attention problems and difficulties with social development (e.g., fewer friends and less influence during family interactions). For other outcomes, trajectories of adjustment levels for adolescents with SB converged on levels observed in comparison adolescents, indicating some areas of resilience. Girls with SB were at risk for increasing levels of social difficulties and negative perceptions of their physical appearance. Clinical implications are discussed.

Trajectories of family processes across the adolescent transition in youth with spina bifida.

The current study investigated change in family processes, including conflict, cohesion, and stress, across the adolescent transition, comparing the developmental trajectories of youth with and without spina bifida. Individual growth curve modeling procedures were utilized to describe the developmental course of family processes across 4 waves of data collection, from ages 9 to 15 years, and to test whether illness status (spina bifida vs. matched comparison group [N = 68 for both groups at Time 1]) would significantly predict individual variability in family processes. Potential moderators (child gender, socioeconomic status [SES], and child verbal ability) of the association between illness status and family functioning were also examined. Differences were found between the trajectories of family processes for families of youth with and without spina bifida. For families of youth with spina bifida, changes in family conflict and cohesion may be less dramatic than or inconsistent with what is expected during typical adolescence. Families of youth with spina bifida from low SES homes appear to demonstrate resilience in terms of family stress.

Development and evaluation of a palliative care curriculum for cystic fibrosis healthcare providers

BACKGROUND Primary palliative care refers to basic skills that all healthcare providers can employ to improve quality of life for patients at any stage of disease. Training in these core skills is not commonly provided to clinicians caring for cystic fibrosis (CF) patients. The objective of this study was to assess change in comfort with core skills among care team members after participation in CF-specific palliative care training focused on management of burdensome symptoms and difficult conversations. METHODS A qualitative needs assessment was performed to inform the development of an 18-hour curriculum tailored to the chronicity and complexity of CF care. A 32-question pre- and post-course survey assessed CF provider comfort with the targeted palliative care skills in 5 domains using a 5-point Likert scale (1=very uncomfortable, 3=neutral, 5=very comfortable). RESULTS Among course participants (n=16), mean overall comfort score increased by 0.9, from 3 (neutral) to 3.9 (comfortable) (p<0.001). Mean comfort level increased significantly (range 0.8 to 1.4) in each skill domain: use of supportive care resources, pain management, non-pain symptom management, communication, and psychosocial skills. CONCLUSIONS CF-specific palliative care training was well received by participants and significantly improved self-assessed comfort with core skills.

Screening for ADHD in adults with cystic fibrosis: Prevalence, health-related quality of life, and adherence

BACKGROUND International guidelines recommend depression and anxiety screening in individuals with cystic fibrosis (CF), but Attention-Deficit Hyperactivity Disorder (ADHD) remains understudied. METHODS Adults with CF (n=53) were screened using the Adult ADHD Self-Report Scale-v1.1 Symptom Checklist (ASRS-v1.1), Cystic Fibrosis Questionnaire-Revised (CFQ-R), and a self-report measure of treatment adherence. RESULTS Elevated ADHD symptoms on the ASRS-v1.1 screener were reported by 15% of participants. Self-reported adherence, Body Mass Index in kg/m2 (BMI), and Forced Expiratory Volume in 1 Second, Percent Predicted (FEV1%pred) did not differ between participants with vs. without elevated ADHD scores. Three CFQ-R scales, Physical Functioning, Role Functioning, and Respiratory Symptoms, were significantly lower in participants with elevated ADHD screens (unadjusted p<0.05). This difference remained statistically significant for the Role Functioning and Respiratory Symptoms scales following correction for multiple comparisons. CONCLUSIONS The highly specific screening tool ASRS-v1.1 can ascertain previously undetected ADHD symptoms in adults with CF. ADHD was substantially more prevalent than expected in this population. Elevated ASRS-v1.1 screens correlated with poorer Health-Related Quality of Life (HRQoL) in some domains, but not with BMI, FEV1%pred, or self-reported CF treatment adherence. Additional research will elucidate the impact of ADHD and its treatment on HRQoL, CF self-care and health outcomes.

The CF-CARES primary palliative care model: A CF-specific structured assessment of symptoms, distress, and coping

BACKGROUND Current palliative care tools do not address distressing chronic symptoms that are most relevant to cystic fibrosis. METHODS A CF-specific structured assessment based on a primary palliative care framework was administered to 41 adolescents and adults with CF. Descriptive and correlational analyses were conducted. RESULTS Patients reported numerous physical and psychological symptoms (mean of 10 per patient), with psychological symptoms rated as more distressing. Anxiety (34%) and depression (44%) were prevalent and correlated with distress attributable to physical symptoms and difficulty with CF self-management, but did not correlate with disease severity. CONCLUSIONS Individuals with CF, regardless of disease severity, face challenges managing symptom burden. Frequently reported symptoms are not consistently associated with distress, suggesting the importance of individualized evaluation. The CF-CARES (Coping, goal Assessment, and Relief from Evolving CF Symptoms) primary palliative care assessment model provides a framework for patients experiencing chronic symptoms to explore interventional options with their clinicians.

Asthma and the Family

Regardless of whether patients are young children, adolescents, or adults, the management and course of asthma most often takes place within the context of a family. Parents of young children with asthma monitor and treat asthma symptoms, parents and older children negotiate management of asthma with one another, and spouses and/or caretakers of older adults with asthma can support or hinder efforts toward appropriate symptom management and trigger control. Family systems theory emphasizes how, for chronic illnesses, family members’ attitudes and behaviors regarding the illness do not exist in a static system, but mutually influence one another within and across contexts (Kazak 1989). For example, family dysfunction, including family conflict and parental mental health problems, is a risk factor for mental and physical health problems in children (Fiese et al. 2000). On the other side of the continuum, family strengths, such as family cohesion and competent parenting, may serve a protective function, enabling a child with asthma to demonstrate resilience (Koinis Mitchell et al. 2004).

Advance Care Planning Experiences and Preferences among People with Cystic Fibrosis

BACKGROUND Advance care planning (ACP) is recommended for people with cystic fibrosis (CF), yet guidance for optimal implementation is lacking. OBJECTIVE To assess ACP-related thoughts, comfort level, and preferences among people with CF to guide evidence-based routine implementation of ACP in the CF clinic. DESIGN A cross-sectional survey assessed ACP-related experiences and preferences. SUBJECTS Thirty-eight adolescents and adults with CF from an urban CF center. RESULTS Few subjects reported talking to their CF team about ACP care preferences (5%) or completing advance directives detailing desired medical treatments (11%). However, most participants worried about living with advanced disease (84%) and felt comfortable discussing ACP preferences with CF providers (92%). Subjects largely preferred that ACP conversations occur when they are generally healthy, in the outpatient setting, and with any familiar CF team member. Disease severity was not associated with frequency of worry about living with advanced disease, comfort level with ACP discussions, or ACP setting preferences. CONCLUSIONS People with CF worry about advanced disease and feel comfortable discussing ACP, but need more guidance to understand and document ACP choices. CF patient experiences and preferences support implementation of an early, active approach to ACP for people with CF.