Families caring for a child born preterm face long-term and multilayered challenges. The limited research on this topic suggests that this impact is largely negative (Beckman and Pokorni, 1988; Cronin et al., 1995; Davis et al., 2003; Eisengart et al., 2003; Lee et al., 1991; Macey et al., 1987; McCain, 1990; McCormick et al., 1986; Singer et al., 1999; Stjernqvist and Svenningsen, 1995; Taylor et al., 2001; Veddovi et al., 2001), although some studies found positive outcomes (Macey et al., 1987; Saigal et al., 2000a; Singer et al., 1999). Furthermore, the impact varies according to sociodemographic risk factors as well as the severity of the child's health condition (Beckman and Pokorni, 1988; Cronin et al., 1995; Davis et al., 2003; Eisengart et al., 2003; Lee et al., 1991; McCormick et al., 1986; Rivers et al., 1987; Saigal et al., 2000a; Singer et al., 1999; Taylor et al., 2001; Veddovi et al., 2001).
Most studies on the impact of caring for a preterm infant have focused on those born at less than 32 weeks gestation (Davis et al., 2003) and less than 35 weeks of gestation (Veddovi et al., 2001), although others studied low-birth-weight infants (birth weights less than 1,500 grams or less than 1,750 grams) (Eisengart et al., 2003; Macey et al., 1987; Singer et al., 1999). Others have used prematurity and low birth weight as a continuous variable (Beckman and Pokorni, 1988). The assessment of outcomes has centered on the mother's psychological well-being in the postpartum period and suggests that the mothers of infants born preterm are at risk of experiencing depressive symptoms (Davis et al., 2003; Singer et al., 1999; Veddovi et al., 2001). Longitudinal studies of children born preterm and with low birth weights in the first 2 to 3 years of life suggest that the levels of maternal depression and psychological distress (Singer et al., 1999), as well as problems related to the child, decreased over time (Beckman and Pokorni, 1988) except among high-risk (defined as having bronchopulmonary dysplasia) infants (Singer et al., 1999). Furthermore, specific factors that may contribute to depressive symptoms include a higher medical risk for the infants, the less frequent use of informal networks to obtain information about their infants, increased use of escape-avoidance coping strategies, and less knowledge of infant development (Eisengart et al., 2003; Veddovi et al., 2001). On the other hand, factors that might buffer these mothers from depressive symptoms include a higher level of educational attainment and support from nurses (Davis et al., 2003).
Families caring for a child who was born preterm continue to manage the effects of prematurity when the children are toddlers (Lee et al., 1991; McCormick et al., 1986; Singer et al., 1999), school age (Cronin et al, 1995; Lee et al., 1991; McCain, 1990; Rivers et al., 1987; Taylor et al., 2001), and adolescents (Saigal et al., 2000a). Studies focusing on these children have mainly included children who were born weighing less than 2,500 grams (Cronin et al., 1995; Lee et al., 1991;McCormick et al., 1986; Rivers et al., 1987; Singer et al., 1999; Taylor et al., 2001); and only one focused on children born weighing less than 1,000 grams (Saigal et al., 2000a). Their findings suggest that the impact on families is long term and that the parents, siblings, finances, and family functioning are all affected (Cronin et al., 1995; Saigal et al., 2000a; Singer et al., 1999; Taylor et al., 2001). Furthermore, the families of children with more severe levels of impairment are the most affected (Cronin et al., 1995; Rivers et al., 1987; Saigal et al., 2000a; Singer et al., 1999; Taylor, 2001).
At the individual level of the impact of a preterm birth on the family, the parents of children born preterm report higher levels of emotional distress (Saigal et al., 2000a; Singer et al., 1999; Taylor et al., 2001) and strain and a compromised sense of mastery (Cronin et al., 1995). One study suggests that some of the factors that parents associate with higher stress levels might include supervision of the child, the child's peer relationships and self-esteem, the impact of the child's difficulties on family routines, and worrying about the child's future (Taylor et al., 2001). The length of time that the newborn preterm infant must stay in the hospital also affects the ability of the mother to fulfill her role in the family (McCain, 1990).
Other studies suggest that there might be gender differences in parents' perception of problems. Mothers perceived that the preterm birth of a child had a greater impact on their sense of mastery, finances, and employment (Cronin et al., 1995). They also perceived greater satisfaction in caring for their child (Cronin et al., 1995). The mothers also perceived a greater impact when the child was born at a younger gestational age (Lee et al., 1991), experienced more physical symptoms during the pregnancy, and were more likely than the fathers to experience crisis reactions (Stjernqvist, 1992). On the other hand, fathers perceived greater uncertainty, less individual strain (Cronin et al., 1995), and greater effects at lower levels of progression of the infant's development (Lee et al., 1991).
Beyond the impact on each of the parents individually, caring for children born preterm affects other units within the family, including the couple, the siblings, and the family as a whole (Beckman and Pokorni, 1988; Cronin et al., 1995; Macey et al., 1987; McCormick et al., 1986;
Saigal et al., 2000a; Singer et al., 1999; Stjernqvist, 1992; Taylor et al., 2001). Specifically, the parent's marital relationship is stressed (Macey et al., 1987; Stjernqvist, 1992), at times leading to divorce (Saigal et al., 2000a), and parenting difficulties emerge (Taylor et al., 2001). Siblings are affected because of the decreased attention that they receive from their parents (Saigal et al., 2000a). The family as a unit is affected by the greater likelihood of not having additional children (Cronin et al., 1995; Saigal et al., 2000a), the financial burden (Cronin et al., 1995; Macey et al., 1987; McCormick et al., 1986; Rivers et al., 1987), limits on family social life (Cronin et al., 1995; McCormick et al., 1986), high levels of adverse family outcomes (family stress and dysfunction) (Beckman and Pokorni, 1988; Singer et al., 1999; Taylor et al., 2001), and parents' difficulty maintaining employment (Macey et al., 1987; Saigal et al., 2000a). Lower income and education place an additional burden on families caring for children born preterm (Cronin et al., 1995; McCormick et al., 1986; Taylor et al., 2001), although one study found that the higher medical risks faced by neonates had more significant impacts on socioeconomically advantaged families (Taylor et al., 2001).
Furthermore, different factors predict family stress at different ages (Beckman and Pokorni, 1988). When the neonate born prematurely was 3 months of age, it was found that informal support, the number of siblings, and the family's socioeconomic condition were the most important factors; at 6 months of age, gestational age at birth, home environment, caregiving demands, and the number of parents in the home were the most important; at 12 months of age, race, home environment, and scores on the Bayley scales of infant development were the most important; and at 24 months of age, birth weight at birth, informal social support, temperament, caregiving demands, and race were the most important (Beckman and Pokorni, 1988).
Families and parents also have positive experiences and demonstrate resilience in caring for a child with impairments related to prematurity. A study by Saigal and colleagues (2000a) found that parents perceived positive interactions with friends and within the family stemming from their efforts to care for their child born with low birth weight less than 1,000 grams. The parents also reported enhanced personal feelings and improved marital closeness (Saigal et al., 2000a). Macey and colleagues (1987) found that at 12 months of age (corrected for prematurity), 50 percent of the infants' mothers perceived their marriage to be more cohesive. Other studies suggest that these parents perceive their children to be acceptable, attached, and reinforcing (Singer et al., 1999) and to have a greater appreciation for their child than was the case when the child was an infant (Rivers et al., 1987). Thus, the impact of caring for a child born preterm may also contribute to the growth of the family as well as its members.
In summary, the limited evidence presented here suggests that caring for a child born pre-term has negative and positive impacts on the family that change over time, that these impacts extend to adolescence and are influenced by different environmental factors across time, and that many areas of family well-being are affected. However, because of the limitations of these studies, further research is needed. First, these findings are limited in their generalizability because of a lack of ethnic and socioeconomic diversity in the samples and because a higher proportion of mothers than fathers were surveyed. Research should strive to balance these sociodemographic factors in the samples used. Second,,the measures used to determine the effects of a child born prematurely on the family and the child's functional health were not uniform across studies. For example, the effects on the family were measured as the economic burden, parental symptomatology, and parenting stress, among others. Similarly, the child's health and functional health status were assessed on the basis of the presence of serious health conditions in one study, whereas other studies formally assessed functional health status by the use of validated measures.
Future studies could advance knowledge in this area by developing a measure that would capture the particular health and functional health challenges that these families and the children born preterm face. In a recent review of functional health outcomes of preterm children, Donohue (2002) suggested that measures that are sensitive to the child's developmental stage should be developed for children and that the measures for parents should focus on the peculiarities of their role as caregivers for these children.
Third, the few longitudinal studies reviewed in this section suggest that future research is needed to study changes in the impact of a child born preterm on the family over time. The fourth limitation noted in the studies reviewed were the variations in the gestational ages and the birth weights of the infants. Researchers should be encouraged to focus on prematurity by gesta-tional age in addition to birth weight, so that the variations in the impacts on families can be ascertained by gestational age. Finally, studies of the impacts of an infant born preterm on families during the child's infancy should assess outcomes beyond maternal depressive symptoms in the postpartum period.
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