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Society & Culture (Article heading)

PSYCHOSOCIAL ASPECTS

Rob -

The pain caused by SCD is a primary reason for frequent hospitalizations.  This can affect the development and psychosocial behaviors in children. Children with SCD have higher rates of depression, anxiety, aggression and can feel withdrawn from society due to the unpredictability of the disease and constant fear of another exacerbation.  It is highly important to not only control the pain symptoms in children with SCD but to also provide them with support and counseling to prevent or improve behavior issues and developmental delays.

Bakri, M. H., Ismail, E. A., Elsedfy, G. O., Amr, M. A., & Ibrahim, A. (2014, October). Behavioral impact of sickle cell disease in young children with repeated hospitalization. Retrieved from https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4236938/.

Psychosocial Challenges in Affected Pediatric Patients

Silvana

SCD is a chronic and possibly life-threatening disorder that affects children and adolescents' thoughts and subsequently their behavior as interrelated with society. A most common symptom of SCD is recurring pain, acute or chronic. Acute pain is caused by sickled erythrocytes causing obstruction of blood flow which leads to tissue injury. If pain lasts for more than 3 months, it is considered chronic pain. According to PiSCES (The Pain in Sickle Cell Epidemiology Study), there were 1,515 days surveyed in which children reported having pain at home 9% of those days.This pain can interfere with attendance at school, social impact health status, possibly exacerbating the condition, and, ultimately, pediatric adaptation to SCD.

Compared to their demographically matched peers, SCD children and adolescents are at high risk

for developing low self-esteem, internalizing and externalizing disorders, psychological distress, and

decreased school achievement, However, strength can be developed in the difficult circumstances in

the lives of these children and families. This is proven by a 2003 Cooperative Study of Sickle Cell

Disease enrollment which showed the resound resilience of SCD children. The majority of them

function adaptively to their stressors.

1. ^{Comprehensive handbook of childhood cancer and sickle cell disease : a biopsychosocial approach. Brown, Ronald T. Oxford: Oxford University Press. 2006. P. 471. ISBN 142942026X. OCLC 76909342.}
2. ^{Thomas, JT. Sickle Cell Disease. ISBN 9781511984850.}
3. ^{U.S. Department of Health and Human Services (2014).  Evidence-based Management of Sickle Cell Disease.  Middleton, DE. P. 56. ISBN 978-1-387-95290-2}

^Amber

^{Recent studies suggest therapies such as Cognitive Behavioral Therapy (CBT) may be helpful in alleviating pain while decreasing Opioids usage.  CBT has been shown to help treat some of the psychosocial effects of SCD such as anxiety and depression. Other non-pharmacological methods, such as peer support groups were shown to be effective in pain reduction and decrease the interference of pain in patient’s lives. Massage has been linked decreased reports of pain as well as less hospital visits. Recent studies suggest aquatic rehabilitation programs were linked to less reported pain and improved respiratory function.}

^{Hants, W. & Tanabe, P. (2015) Sickle cell disease: A review of nonpharmacological approaches for pain. Journal of Pain and Symptom Management, 51(2),163–177}  

Andrew

The general public is often not educated about sickle cell disease and form their own, typically negative, opinions about people with the disease.  As a result of these stereotypes, people with SCD often feel devalued and experience status loss. They also have their pain experiences discredited by others and are accused of being weak, lazy, or pretending to be ill. Reported reasons for disclosure concerns include fear of being treated differently or discriminated against. People with SCD also reported discrimination experiences with employment and receiving healthcare as a result of revealing their disease status.

Bulgin, D., Tanabe, P., & Jenerette, C. (2018). Stigma of sickle cell disease: A systematic review. Issues in Mental Health Nursing, 39(8), 675–686. doi: 10.1080/01612840.2018.1443530

Genevieve

Sickle cell disease (SCD) is a genetic disorder that causes acute or chronic health conditions, especially pain. Poorly managed acute pain may have a potential to transform into psychological concerns and disrupt quality of life, especially to children who are of highest risk for such crisis. Opioids is the drug of choice for moderate to severe pain management with SCD. Cognitive behavioral therapy (CBT) is increasingly utilized as well as an addition to pharmacological pain interventions. It is uncertain however if CBT can reduce the use of opioids to manage pain in pediatric SCD.

Reference:

Anderson, A. T., Tran, N., Smith, K., & Kelley-Quon, L. I. (2019). The Role of Cognitive Behavioral Therapy in Opioid Use Reduction in Pediatric Sickle Cell Disease: Protocol for a Systematic Review. JMIR Research Protocols, 8(7). doi: 10.2196/13211

Cognitive factors modify the effect of SCD severity on Health-Related Quality of Life (HRQL, particularly among young with milder forms of SCD. Future studies are warranted to clarify the role of cognitive abilities in determining HRQL. Clinicians should monitor youth with milder forms of SCD and limited cognitive abilities for worsening HRQL and opportunities to provide support around disease self-management.

Reference:

Steven J Hardy, Sarah E Bills, Shane M Wise, Kristina K Hardy, Cognitive Abilities Moderate the Effect of Disease Severity on Health-Related Quality of Life in Pediatric Sickle Cell Disease, Journal of Pediatric Psychology, Volume 43, Issue 8, September 2018, Pages 882–894, https://doi.org/10.1093/jpepsy/jsy019

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