Psychological Adjustment of Children With Sickle Cell Disease: Family Functioning and Coping.

Abstract

to determine the effects of coping style and family functioning on children's adjustment to sickle cell disease (SCD). Participants: A sample of 73 caregivers and 23 children (ages birth to 18 years) admitted to a hematology acute care unit for pain or fever associated with SCD. Setting: A children's hospital on the East Coast of the United States. Outcome Measures: Disability stress, disease severity, child and parent coping, family functioning, and child adjustment were assessed with standard paper-and-pencil measures. Results: Results provide partial support for J. L. Wallander et al.'s (1989) risk-resistance model. Disability stress did not mediate the relation between disease severity and child adjustment, and severity of medical condition and medical stress did not predict adjustment. Child gender and child age predicted family functioning and child adjustment to SCD. Child or parent coping strategies did not moderate the association of disability stress and child adjustment. Conclusions: Individuals working with patients should be aware of other factors that may affect child outcome above disease severity; specifically, concerns of boys and girls with SCD and their caregivers should be assessed.Sickle cell disease (SCD) affects predominantly the African American population, with 1 in every 400 to 500 African Americans becoming infected (Hurtig, Koepke, & Park, 1989). In SCD abnormal hemoglobin molecules cluster together during deoxygenation, resulting in sickle-shaped red blood cells that obstruct blood flow. SCD produces a number of symptoms and can lead to early mortality (Lemanek, Buckloh, Woods, & Butler, 1995).Individuals with SCD vary in severity with some requiring 3 to 4 months of hospitalization a year, whereas others never use hospital services. Clinical presentation includes vaso-occlusive crises, infection, cerebrovascular accidents, anemic episodes, retarded growth, deterioration in vision, cardiac concerns, abdominal pain, hyperbilirubinemia, and delayed puberty (Charache, Lubin, & Reid, 1984;Lemanek et al., 1995). Pain episodes are one of the most reported symptoms noted in SCD and can result in multiple hospitalizations and repeated absence from school. Traditional treatment for SCD includes hydration, warmth, transfusion therapy, and analgesic medication, although nonpharmacologic meth-ods to reduce pain, including cognitive-behavioral and guided imagery intervention, have been evaluated (Gil, 1989;Gil et al., 2001). Improved medical care has led to an increased life span for individuals with SCD, with females living approximately 48 years and males approximately 42 years (Lemanek et al., 1995). With this increase in the life span of children with SCD, research has begun to focus on how individuals are affected by, and continue to live with, factors associated with chronic illness.Recent reports indicate wide variations in the adjustment of children with SCD (

Symptoms of Depression and Anxiety in Adolescents with Sickle Cell Disease: The Role of Intrapersonal Characteristics and Stress Processing Variables

“…These findings are similar to past studies, in that hypothesized mediator and moderator models with hope [28] and coping [29] were not supported. However, there were a number of important factors highlighted within the models indicating that pathways to resiliency may be more complex.…”

Applying the Transactional Stress and Coping Model to Sickle Cell Disorder and Insulin-Dependent Diabetes Mellitus: Identifying Psychosocial Variables Related to Adjustment and Intervention

“…A number of studies have failed to find a relation between disease variables, such as SCD-related emergency room visits or pain frequency and intensity, and psychosocial adjustment (Burlew et al, 2000;Casey et al, 2000;Hurtig et al, 1989;Lutz et al, 2004;Noll et al, 1996). These findings highlight the potential influence of psychosocial factors on adjustment.…”

“…The authors of the study concluded that the disease affects males more significantly in adolescence, possibly because SCD's impact on physical growth and physical activities is more likely to affect peer interactions. A more recent study found that girls with SCD self-reported a better quality of life than boys with SCD (Lutz et al, 2004). The boys in the sample had more SCD-related visits to the emergency room, more pain episodes and more contacts with health care professionals.…”

“…Gil et al (2003) relied on a daily diary method, which may have the sensitivity to track the relation between SCD pain and complications and mood and adjustment on a daily basis. Other studies usually rely on broad ratings of SCD severity and adjustment (e.g., Burlew et al, 2000;Casey et al, 2000;Hurtig et al, 1989;Lutz et al, 2004;Noll et al, 1996). Future research should examine the relation between SCD pain and complications and adjustment on a smaller scale and focus on the possible relation between severity variables and daily fluctuations in adjustment difficulties.…”

Eficacia de intervenciones psicológicas dirigidas a promover el ajuste de niños con cáncer y de sus padres: una revisión

“…About this issue, our review suggests that the effectiveness of children interventions could be improved if we involve parents in the process, something which there is little consensus about. Some researchers argue that parents care would be sufficient to improve the children's adjustment (Hastings & Beck, 2004), while others seem to be favorable to a joint intervention (Barakat, Lutz, Nicolaou & Lash, 2005;Fuemmeler et al, 2003;Klassen et al, 2011, Landolt, Vollrath, Niggli, Gnehm & Sennhauser., 2006 and a third group claims that there is no relationship between improvement of children and parents (Grootenhuis & Last, 1997;Lutz, Barakat, Smith-Whitley & Ohene-Frempong, 2004;Robinson et al, 2007).…”