Unexpected challenges faced by caregivers of children with neurogenic bladder: A qualitative study.

BACKGROUND: Management of the neurogenic bladder is variable, complex, and often requires a demanding bladder care regimen which may present caregiver burdens that are unique among chronic disease. While research into patient quality of life is increasing, parallel study of the caregiver experience is scant. Existing research primarily comprises survey data using validated instruments originally developed for non-urologic conditions, such as dementia. These surveys may detect high caregiver burden and decreased quality of life amongst caregivers but are limited in their ability to understand the underlying causes. OBJECTIVE: To characterize the experience of those caring for children with neurogenic bladders, with a focus on unexpected burdens and challenges. METHODS: In light of limited existing research, a qualitative research methodology was selected to explore the caregiver experience. Semi-structured phone interviews were conducted with primary caregivers of children with neurogenic bladder, all of whom were patients in the pediatric urology department of a single tertiary pediatric referral center. Purposive sampling was used to ensure diverse representation. Interviews were recorded, transcribed, and professionally translated if needed. Transcripts were analyzed using a team-based inductive grounded-theory approach, facilitated by ATLAS. ti software. Member-checking focus groups were held to validate the results. RESULTS: Twenty-five caregivers were interviewed (20 in English, 5 in Spanish), at which point thematic saturation was reached. Three primary themes emerged surrounding the topic of unexpected challenges: 1. High caregiver burden, 2. Challenges with catheterization and supplies, 3. Urinary tract infections. Member-checking focus groups validated the thematic analysis and provided additional insights into mitigating factors for these challenges. A child's independence with his or her health care regimen was cited as particularly important for decreasing caregiver burden. DISCUSSION: Caregivers of children with neurogenic bladder report their role is more difficult than they anticipated it would be. Catheterization represents a particularly burdensome task, and recurrent infections are an unexpected and persistent medical challenge. Understanding unexpected challenges that caregivers face will help pediatric urologists target modifiable factors to decrease caregiver burden, address current gaps in counseling and expectation-setting, and set the stage for more complete shared decision-making. CONCLUSIONS: This study represents an initial qualitative characterization of the experience caring for a child with neurogenic bladder. This is a key first step in understanding how caregivers make decisions for their children and their families. This initial study is foundational to a larger project to create a decision aid for caregivers of children with neurogenic bladder.

Surgical experiences in adolescents and young adults with differences of sex development: A qualitative examination.

BACKGROUND: Surgical intervention in youth with differences of sex development (DSD) is a controversial topic. Historically, evidence suggests that genital surgery in DSD is associated with mixed patient satisfaction. However, less is known about surgical outcomes under therapeutic advancements in the past several decades. OBJECTIVE: The purpose of the current study is to provide an updated and empirical qualitative examination of the surgical experiences and responses to care of adolescents and young adults (AYA) with DSD in order to fill this gap in the literature and inform patient care. METHODS: Qualitative interviews were conducted with 37 AYA (ages 12-26) with DSD. Interviews were transcribed, coded, and analyzed thematically. RESULTS: Three major themes were identified: 1) knowledge related to surgery; 2) surgical and medical experience; and 3) psychosocial factors related to surgery. Results demonstrated that most AYA were not involved in the decision to pursue surgery and were observed to have varying levels of knowledge regarding their surgeries. Most participants in the current study had received a DSD-related surgery and the majority described having positive surgical experiences and few regrets. Nonetheless, AYA described both medical and psychosocial challenges related to their surgeries and recoveries and offered feedback on ways to improve the surgical process. DISCUSSION: The current study provides a qualitative examination of the surgical experiences of 37 AYA with DSD. Findings highlight the importance of regular and ongoing communication with providers to improve knowledge related to surgery during the decision-making process as well as after surgical intervention. Results underscore the benefits of multidisciplinary teams and the value of patient handouts and decision aids in assisting AYA in the decision to pursue surgical intervention. Other specific recommendations for providers include increased patient privacy during genital exams, greater emphasis on psychoeducation and pain management strategies, and the use of behavioral health services to assist with challenges and social support. CONCLUSIONS: The decision to pursue surgical intervention in youth with DSD remains a complex and controversial issue, and more information regarding patients' perspectives on surgery is needed. The current study provides novel insights into patient experiences of surgical intervention and highlights the need for psychosocial support throughout the shared decision-making process.

Correlates of health-related quality of life in youth with psychogenic non-epileptic seizures.

BACKGROUND: Few studies have examined factors associated with health-related quality of life (HRQoL) in youth with psychogenic non-epileptic seizures (PNES). In adults, internalizing symptoms such as depression have been shown to be more closely associated with HRQoL than seizure frequency, however, this has not been studied in samples of youth. Investigations into these areas are needed in order to enhance our understanding of the impact of this condition on children and adolescents and inform future clinical intervention. METHODS: The current study includes 37 youth and one of their parents who attended a clinic visit for treatment of PNES. Children and parents completed measures of psychological functioning, and medical data were extracted from patient charts. RESULTS: Parent-reported anxiety (B=-0.45, p = 0.05) and depression (B=-0.60, p = 0.01) were related to parent-report of HRQoL; self-report of depression was related to self-reported HRQoL (B=-0.90, p < 0.001). Seizure frequency, somatic complaints, and social problems were not related to HRQoL in this sample. CONCLUSIONS: Internalizing symptoms, not seizure frequency, are associated with poorer overall functioning in youth with PNES. Interventions focused on improving anxiety and depression in addition to seizure cessation may contribute to improved HRQoL in youth with PNES more so than those focused on seizure cessation alone.

Medical and psychosocial outcomes of youth with psychogenic nonepileptic seizures: An observational study.

BACKGROUND: Few studies have examined both medical and psychosocial outcomes of youth with psychogenic nonepileptic seizures (PNES). The current observational study aimed to fill this gap by examining changes in seizure frequency, school absences, emergency department (ED) visits, psychological functioning, and health-related quality of life (HRQoL) in youth attending a clinic for brief treatment of PNES. METHODS: Nineteen youth with PNES and their families presented to an integrated clinic and received psychoeducation and recommendations by medical and mental health professionals. Patients returned to the clinic, on average six months later, for follow-up. Parent proxy-report and self-report measures of psychological functioning and HRQoL were collected at each visit, and medical data were extracted from patient charts. RESULTS: Forty-six percent of youth in the study experienced a reduction in seizure frequency, and 58% reported improvements in school attendance. Emergency department visits decreased by over 50%, and significant improvements in parent proxy-report of depression and HRQoL were observed. CONCLUSIONS: Results provide valuable information regarding the clinical profiles of youth with PNES and demonstrate the possibility for improved medical and psychosocial prognoses in response to psychoeducation and treatment guidance. Information obtained in this study may aid in the design of future clinical trials and research, assisting in the development of appropriate interventions.

Impact of atopic dermatitis treatment on child and parent sleep, daytime functioning, and quality of life.

BACKGROUND: Atopic dermatitis (AD) is a common childhood disorder that is associated with a variety of negative health outcomes in children and parents, including poor sleep and daytime functioning. Despite this, few studies have examined the impact of treatment for AD on sleep, and even fewer have included validated sleep questionnaires, child report of sleep disturbance, or objective measures of sleep. OBJECTIVE: To address limitations in the literature by examining objective and subjective reports of sleep, as well as measures of daytime functioning before and after admission to an intensive treatment program for AD. METHODS: Twenty-nine parent-child dyads who presented to an intensive day treatment program participated in this study. Sleep was objectively measured with 1 week of actigraphy both 1 week before admission and 1 month after discharge. Subjective questionnaires of sleep, daytime functioning, and quality of life were completed by children and parents at admission, discharge, 1 month after discharge, and 3 months after discharge. RESULTS: Study results highlight the benefit of the treatment program on reducing AD severity, as well as improvements in objectively measured sleep duration and efficiency, self-reported measures of sleep, daytime functioning, and quality of life in children and parents up to 3 months after discharge. CONCLUSION: This study highlights the importance of treatment for child AD on both child and parent health outcomes.

Male gender and unemployment are associated with lower levels of perceived social support in adults with cystic fibrosis.

OBJECTIVE: Adults with cystic fibrosis (CF) face unique challenges with regard to the attainment and maintenance of social support. Although social support has been shown to improve treatment outcomes in other patient-populations, research on social support in adults with CF is limited. In fact, no studies have examined factors associated with less perceived social support in this population. The current study aimed to fill this gap, thus providing CF care teams with empirical evidence about who may be most likely to lack support and inform future intervention. METHODS: Participants in this cross-sectional study included 233 adults with CF who were part of a larger, longitudinal study. Participants completed the Interpersonal Support Evaluation List, a measure of social support, and attended routine clinical visits where measures of disease severity were obtained. RESULTS: Being female and employed were associated with greater perceptions of social support in this sample. Age, income, education, marital status, and disease-severity were not related to perceptions of social support. CONCLUSION: The present study revealed that individuals with CF who are unemployed and those who are male perceived having lower social support, perhaps identifying subgroups for whom targeted interventions may be appropriate.

Social support is associated with fewer reported symptoms and decreased treatment burden in adults with cystic fibrosis.

BACKGROUND: Although social support has been linked to a variety of health outcomes in those with and without chronic illness, this construct has rarely been studied in adults with cystic fibrosis (CF), who may face a unique set of clinical and psychosocial barriers. The current study explored the relationships between social support, mental health, physical health, treatment activity, and disease-specific quality of life in a sample of adults with CF. METHODS: Participants in the study included 250 adults with CF who took part in a larger longitudinal study. Participants were administered a battery of measures including a social support evaluation (Interpersonal Support Evaluation List, ISEL), a health assessment (Memorial Symptom Assessment Scale, MSAS), a health-related quality of life measure (Cystic Fibrosis Questionnaire - Revised, CFQ-R), and treatment activity questionnaires (Tool for Adherence Behaviour Screening, TABS and other surveys). RESULTS: Linear regression analyses indicated that greater social support was associated with fewer self-reported mental and physical health symptoms, digestive symptoms, and eating disturbances over time. Social support also was associated with elevated emotional, social, and role functioning as well as vitality and improved body image. Those who reported more support perceived less treatment burden and better overall perceptions of their health. CONCLUSIONS: Social support has been shown to be associated with health outcomes in other chronic illnesses, and the same is true for adults with CF. This study fills gaps in the literature by examining outcomes of social support in this emerging adult population and providing a potential area for intervention.