A situational analysis of problematic situations was conducted for 37 caregivers of children with sickle cell disease (SCD) who ranged in age from 5 to 13 years. Participants responded to a semistructured interview related to caring for a child with SCD. The interview included the domains of medication adherence, nutrition, minimizing and coping with pain episodes, social problems, academic difficulties, and children's expression of negative feelings related to having SCD. Caregivers described a total of 356 problems. Almost all caregivers reported experiencing problems with their children's nutrition (n = 35), minimizing pain episodes (n = 34), and their children expressing feelings about having SCD (n = 33). Moderately challenging and emotionally upsetting problems were reported for coping with pain episodes. The total number of problems was significantly higher for boys than for girls. Nutrition issues were more frequently reported for younger children. Findings have salient clinical implications for the care of children with SCD.
The finding that parents of children with chronic illnesses demonstrate marked psychological distress has been well documented in the literature.1-4 Their distress relates in part to the significant child-rearing burdens these parents encounter when managing illness-related tasks in addition to the general responsibilities of raising a child. In order to design effective interventions to reduce these burdens, acquiring a better understanding of salient child-rearing issues for parents of children with a chronic illness is an undertaking of vital importance.
Thus far, research on the parenting practices of caregivers of children with chronic conditions has focused primarily on measuring of general child-rearing behaviors (i.e., non-illness-specific behaviors) and comparing these with the behaviors of parents of physically healthy children. In the studies comparing the child-rearing practices of parents of children with chronic illnesses such as cancer, cystic fibrosis (CF), insulin-dependent diabetes mellitus, and sickle cell disease (SCD) with the practices of parents of physically healthy children, few differences between the groups of parents have been identified.5-7 The reliance on global, non-illness-specific measures has limited detailed scientific understanding of the specific stressors, such as illness-specific child-rearing dilemmas and parenting behaviors, that lead to increased risk for poor adjustment for children with a chronic illness, as well as for their parents.
The development of more detailed assessment techniques regarding how parents manage child-rearing tasks unique to childhood chronic illness has been strongly recommended.6,8,9 Thus far, an assessment of stressors associated with the specific demands for successful functioning among parents of children with a particular illness has been the focus of research efforts in only a few chronic illness groups, such as CF.8,10 These illness-specific assessments have guided the development of interventions to improve parent-adolescent problem-solving and communication regarding treatment adherence for families of adolescents with CF.11,12
SCD is a model condition with which to examine the illness-specific burdens associated with caring for a child with a chronic illness. SCD is a chronic, hereditary blood disorder, affecting 1 of every 400 to 500 African-American infants born in the United States.13 Education and medical interventions have markedly improved the life expectancy for children, and recent data indicate that among patients with the most common form of SCD (HbSS), 85% to 90% survive to the age 20 years.14 Presently, we know only generally about the illness- and treatment-related demands presented to parents of children with SCD. To manage pain episodes, caregivers may provide analgesia or emotional comfort, or they may coach their children in coping techniques such as distraction or relaxation. Other tasks include administering medication and attempting to minimize pain episodes by encouraging these children to get adequate rest and nutrition, drink plenty of fluids, and avoid extreme temperatures.15 Caregivers may need to help manage social problems that accompany the disease because of some of these children's short stature and physical immaturity.16 Many caregivers also must assist in obtaining the necessary services at school because of their children's associated neurocognitive impairments.16,17
The existing research on the general, non-illness-specific child-rearing practices of caregivers of children with SCD contains some conflicting reports. Although excessive worry, overprotection, and lax discipline have been reported for caregivers of children with SCD,18,19 other investigators have identified few differences from the child-rearing practices of parents of physically healthy children.7,20,21 As an example, a recent investigation conducted by Noll and colleagues7 compared the parenting practices from a widely used parenting inventory of caregivers of children with SCD to parents of physically healthy children on items selected by experts as being distinctive of caregivers of children with SCD (i.e., protectiveness, discipline, and concern or worry). Differences were found for only 2 of 15 items, including "I worry about the health of my child," which is the only item that deals directly with the child's health, and "I don't want my child to be looked upon as different from others." This investigation did not identify or describe the nature of illness-specific parenting tasks encountered by caregivers of children with SCD because the items in this inventory are based primarily on child-rearing dilemmas that are encountered by parents of physically healthy children. Thus, we still do not have systematic information concerning the specific demands that parents of children with SCD find most problematic.
The primary purpose of this investigation was to perform an in-depth analysis of parental descriptions of problems to be managed because of the medical condition for caregivers of children with SCD. To serve this purpose, a situational analysis of concrete problematic situations was conducted that was based on Goldfried and D'Zurilla's22 behavioral-analytic model for assessing behavioral competence. A situational analysis is a comprehensive survey of the relevant situations in the environment with which the individual must cope. Such an analysis was refined by Goldfried and D'Zurilla for assessing positive mental health and involves the "specific, but meaningful situations with which most individuals in the particular environment must cope effectively in order to be considered 'competent'" (p 164). One means of conducting a situational analysis is to interview participants about the different domains in which problematic situations are likely to occur in order to generate a large sample of situations. Within the realm of adaptation of children with chronic illnesses and their caregivers, Quittner and colleagues8 and DiGirolamo and colleagues10 have used this method for children and adolescents with CF.
In accord with the above analytic model, the goals of this investigation of child-rearing stressors encountered by caregivers of children with a chronic illness are to describe the illness-specific problematic situations faced by caregivers of elementary school-aged children with SCD; to determine the number, frequency, difficulty, and emotional effect (i.e., level of negative affective response to problems such as worry or anger) of these problems on caregivers; and to assess the relationship of caregivers' ratings of problematic situations to the children's age, gender, and illness severity (i.e., hemoglobin levels).
Hypotheses were that caregivers of children with SCD would report a wide range of problematic situations in all of the seven domains. Frequently occurring problems were expected in activities of daily living, including aiding children to avoid dehydration and exhaustion (to minimize pain episodes) and to eat a balanced diet. Assisting children in coping with their pain and discussing their feelings about having SCD were expected to be very difficult and emotionally upsetting domains for caregivers. Caregivers of boys were predicted to report greater illness-related parenting stresses than caregivers of girls on the basis of previous research suggesting greater difficulties with adjustment and disease adaptation among boys diagnosed with SCD.23 In addition, caregiver stressors were predicted to be associated with age; greater stressors were predicted to be associated with having a younger child who has SCD. Finally, caregivers whose children had greater disease severity were expected to report more challenging illness-specific child-rearing difficulties.