Resilience of Children with Chronic Health Conditions: The Impact of Neuropsychiatric Comorbidities

BACKGROUND: Resilience, the ability to overcome adversity and effectively recover from stressful experiences, is a complex theory with many contributing factors. Previous studies have shown that condition-specific summer camps for children with chronic health conditions increase resilience and adaptive coping skills, change attitudes toward the illness, and improve quality of life. The aim of this study was to determine how neuropsychiatric comorbid diagnoses such as attention deficit hyperactivity disorder (ADHD), learning disability, and anxiety disorder influence the resilience of children with chronic health conditions. METHODS: Children with chronic health conditions including autism, epilepsy, cerebral palsy, Tourette’s syndrome, sickle cell anemia, neurofibromatosis, congenital heart disease, and type 1 diabetes attended Brainy Camps of Children’s National Health System and participated in this study between 2010-2016. Sixty-seven participants ages 7-17 completed the Connor-Davidson Resilience Scale (CD-RISC) questionnaire pre- and post-camp. Parents of participants reported presence of comorbidities including ADHD, learning disability, and anxiety disorder. Averages for pre- and post-camp CD-RISC scores were taken for participants with ADHD, learning disability, or anxiety disorder, and were compared to scores for control participants without each comorbidity. RESULTS: Averages for all groups indicated an increase in resilience scores. The increase was 10.27 points on the CD-RISC for the 35 participants without ADHD, and 7.95 points for the 32 with ADHD. The increase was 7.61 points for the 30 participants without learning disability, and 5.98 points for the 37 with learning disability. The increase was 8.36 points for the 47 participants without anxiety disorder, and 6.38 points for the 20 with anxiety disorder. CONCLUSIONS: These findings demonstrated a positive shift in resilience for all participants with chronic health conditions who attended Brainy Camps. However, the results indicated larger improvements in resilience for participants without comorbid diagnoses of ADHD, learning disability, or anxiety disorder. Therefore, children with chronic health conditions who also have these neuropsychiatric comorbidities have more challenges developing resilience. One limitation of this study is possible false reporting of comorbid diagnoses from parents. Further research is needed to explore how interventions such as residential summer camps can also impact self-management and health outcomes of children with chronic health conditions

Impact of Condition Specific Camps on Resiliency and Adaptive Behavior in Children with Heart Conditions

Objectives: Resilience is the ability to adapt in stressful situations and overcome adversity through the use of effective coping strategies. Previous studies have demonstrated that condition-specific camps designed for children with epilepsy can increase adaptive coping skills including social interactions, cooperation, initiative, and communication in participants over a three-year period [1,2]. Additionally, research indicates that as a group, individuals who live with chronic health disorders exhibit less hope and have worse health outcomes when compared to their normative peers. The aim of this study was to determine the impact of condition-specific camps on children with heart conditions. Methods: 39 of 75 youths, diagnosed with heart conditions, attended Brainy Camps and participated in this study between 2012-2014. Participants included 5 females and 11 males in the 8-11 year old range and 10 females and 13 males in the 12-17 year old range. The Price-Emory Resiliency Scales, Herth Hope Index, and the Loneliness Scales were completed pre and post camp. A T-score range was used to determine if children with heart conditions differed from normative data in terms of resilience. Resiliency was evaluated among the campers using the subscales of mastery, relatedness, and emotional reactivity. Averages for the pre- and post- camp scores were taken for both single year and consecutive year participants and compared to average scores in the normative data. Results: The 39 children who attended camp demonstrated positive changes in resiliency including emotional reactivity, and hope, by the end of their first year. However, decreased scores in mastery and relatedness and increases in loneliness were also noted. For the 13 children who participated for 2 consecutive years and 3 children who participated for 3 consecutive years, increases in hope and decreases in loneliness were improved with each additional year of attendance. Conclusions: These findings demonstrate a positive shift in hope, loneliness and resiliency in children with heart conditions who attended camp consistently over several years. These findings highlight the potential impact that hope and perceived social support can be influential factors on resilience. Some limitations of this study included small numbers of participants, having data collection pre camp in the child’s home versus post camp at the campsite, and loss to follow up across years. Further research is needed to understand additional factors may influence resiliency in children with heart conditions. For children with chronic illnesses to successfully manage their healthcare, interventions tailored to encourage a sense of hope and social support may prove beneficial. References 1. Cushner-Weinstein, S., Berl, M., Salpekar, J.A., Johnson, J.L., Pearl, P.L., Conry, J.A., Kolodgie, M., Scully, A., Gaillard, W.D., Weinstein, S.L. (2006, October). The benefits of a camp designed for children with epilepsy: Evaluating adaptive behaviors over 3 years. Epilepsy & Behavior. Retrived July 27, 2012 from ScienceDirect. 2. Cushner-Weinstein, S., Walsh, K., Acosta, M., Packer, R.. Hope and perceived social support as predictors of resilience in children with Neurofibromatosis Type 1 [Abstract] 3. Prince-Embury, S. (2007). Resiliency Scales and Profiles: T Score Ranges. Resiliency Scales For Children & Adolescents: A Profile of Personal Strengths. Pages 25-26

Quality-of-life aspects in idiopathic epilepsy in dogs

Quality of life (QoL) plays a significant role in the treatment of dogs with idiopathic epilepsy (IE), yet is so far understudied. This study describes the outcome evaluation of an online questionnaire based on the carer's perception focusing on 62 QoL questions in 159 dogs with IE. Results showed that seizure frequency, but not seizure severity or presence of cluster seizures, was significantly associated with carer-perceived dog's QoL. Dogs receiving third-line antiepileptic drugs had a significantly lower perceived QoL than those that did not. Generalised linear mixed model analysis demonstrated that severity of the side effects sleeping more and ataxia were significantly associated with carer-perceived dog's QoL, with higher severities predicting lower QoL scores. The degree of carer acceptability of seizure frequency and severity was significantly associated with the dog's reported seizure frequency and severity. Moreover, there was a significant association between IE-related QoL changes of the dog and the carer, with reductions in perceived canine QoL scores associated with reductions in carer QoL, and vice versa. In conclusion, aspects of canine IE can affect both the carer and their dog's QoL. This has implications for the management and requires consideration when treatment options and outcomes are discussed

Effective peer-to-peer support for young people with end-stage renal disease: a mixed methods evaluation of Camp COOL

__Abstract__ __Background__ The Camp COOL programme aims to help young Dutch people with end-stage renal disease (ESRD) develop self-management skills. Fellow patients already treated in adult care (hereafter referred to as ‘buddies’) organise the day-to-day program, run the camp, counsel the attendees, and also participate in the activities. The attendees are young people who still have to transfer to adult care. This study aimed to explore the effects of this specific form of peer-to-peer support on the self-management of young people (16–25 years) with ESRD who participated in Camp COOL (CC) (hereafter referred to as ‘participants’). __Methods__ A mixed methods research design was employed. Semi-structured interviews (n = 19) with initiators/staff, participants, and healthcare professionals were conducted. These were combined with retrospective and pre-post surveys among participants (n = 62), and observations during two camp weeks. __Results__ Self-reported effects of participants were: increased self-confidence, more disease-related knowledge, feeling capable of being more responsible and open towards others, and daring to stand up for yourself. According to participants, being a buddy or having one positively affected them. Self-efficacy of attendees and independence of buddies increased, while attendees’ sense of social inclusion decreased (measured as domains of health-related quality of life). The buddy role was a pro-active combination of being supervisor, advisor, and leader. __Conclusions__ Camp COOL allowed young people to support each other in adjusting to everyday life with ESRD. Participating in the camp positively influenced self-management in this group. Peerto- peer support through buddies was much appreciated. Support from young adults was not only beneficial for adolescent attendees, but also for young adult buddies. Paediatric nephrologists are encouraged to refer patients to CC and to facilitate such initiatives. Together with nephrologists in adult care, they could take on a role in selecting buddies