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Predictors of Parenting Stress in Families of Children With Spina Bifida

Michelle M. Macias; Sara C. Clifford; Conway F. Saylor; Susan M. Kreh Online publication date: 07 June 2010

To cite this Article Macias, Michelle M. , Clifford, Sara C. , Saylor, Conway F. and Kreh, Susan M.(2001) 'Predictors of

Parenting Stress in Families of Children With Spina Bifida', Children's Health Care, 30: 1, 57 65 To link to this Article: DOI: 10.1207/S15326888CHC3001_5 URL: http://dx.doi.org/10.1207/S15326888CHC3001_5

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CHILDRENS HEALTH CARE, 30(1), 5765 Copyright 2001, Lawrence Erlbaum Associates, Inc.

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Predictors of Parenting Stress in Families of Children With Spina Bifida

Michelle M. Macias
Division of Genetics and Child Development Medical University of South Carolina

Sarah C. Clifford, Conway F. Saylor, and Susan M. Kreh

The Citadel

Examining predictors of stress in a diverse population of caregivers of children with spina bifida, we examined whether any of the same factors characterized caregivers who choose to access available support services. Participants were caretakers of 56 children with spina bifida, ages 117 years, who completed paper-and-pencil measures of parenting stress and social support. Multiple regression analyses revealed that maternal age emerged as the sole predictor of parenting stress, with older mothers reporting higher stress. Caregivers with higher stress related to child interaction were less likely to participate in support services. Findings were interpreted to suggest that traditional models of family support and outreach might not be sufficient to reach caregivers who report higher stress. In addition to family-centered early intervention, families might need sustained support throughout their childrens school years.

Spina bifida is a congenital condition caused by a defect in the formation of the neural tube during embryonic development, and it is one of the primary causes of paralysis in children (Loebig, 1990). Spina bifida occurs in about 3.2 children for every 10,000 live births in the United States (Lary & Edmonds, 1996). This disorder typically involves a variety of losses or impairments of physical abilities, including ambulation, sensation in the lower body, and bowel and bladder control (Kronenberger & Thompson, 1992a). Families of children with spina bifida often are confronted with a series of stressors related to the disorder (Kronenberger & Thompson, 1992a). These stressors may include fecal and urinary incontinence,
Requests for reprints should be sent to Michelle M. Macias, Division of Genetics and Child Development, 135 Rutledge Avenue, P.O. Box 250561, Charleston, SC 29425. E-mail: maciasm@musc.edu

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growth deformities, ambulation difficulty, shunt malfunctions, hydrocephalus, and special school programming (Kronenburger & Thompson, 1992b). Research conducted on families of children with spina bifida indicates that these families experience a high degree of stress (Kronenberger & Thompson, 1992a; Loebig, 1990; Samuelson, Foltz, & Foxall, 1992) and might be at risk for psychosocial maladjustment (Kronenberger & Thompson, 1992a, 1992b). Studies of this population have focused on (a) levels of stress on the family (Kazak & Clark, 1986; Loebig, 1990; McCormick, Charney, & Stemmler, 1986), (b) levels of social support (Kronenberger & Thompson, 1992b), (c) parental marital quality (Cappelli, McGrath, Daniels, Manion, & Schillinger, 1994), and (d) coping strategies (Samuelson et al., 1992). The research findings with this population are consistent with those of other populations of families of children with special health care needs. One of the primary issues concerning the impact a child with special health care needs has on the family involves the degree to which the childs condition brings about added stress for the family. Families of children with chronic conditions often experience high levels of stress related to raising a child with special needs (Ammerman, Van Hasselt, & Hersen, 1991; Hadadian, 1994; Hartman, Radin, & McConnell, 1992; Kronenberger & Thompson, 1992a; McCormick, Charney, & Stemmler, 1986; Weiss, 1991). The caregivers of these children find it necessary to learn large amounts of technical medical information; adjust to new demands on everyday routines; and make significant decisions about the medical, social, and emotional care of their children. Caregivers also must maintain the familys sense of equilibrium in dealing with the issues involved in raising a special needs child (Hartman et al., 1992). McCormick et al. (1986) reported that the best predictor of the degree of impact that the child with special health care needs has on the family is the number of daily limitations the child experiences due to disability. Increased demands of the child may increase the limitations imposed on the family, particularly the mother. Samuelson et al. (1992) found that more mothers than fathers of children with chronic conditions experience feelings of social isolation. This might be due to the difficulty mothers experience in trying to find adequate alternative care for their childrens special needs (Loebig, 1990). Without proper care for their child, it might be difficult for some mothers to find personal time away from their child. One means of helping the caregivers of children with special health care needs meet the complex and varied needs of these children is through support services (Hartman et al., 1992). It had been noted that support groups are an effective means of assisting mothers of children with disabilities cope more effectively with the stress in their lives (Barakat & Linney, 1992; Smith, Gabard, Dale, & Drucker, 1994; Urey & Viar, 1990). Telleen, Herzog, and Kilbane (1989) observed that caregivers participating in support groups experience reduced stress related to their child and fewer feelings of social isolation. Furthermore, Barakat and Linney

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found that maternal psychological adjustment improved and child behavior problems decreased as mothers social networks increased. Although supportive interventions intuitively are appealing, actual participation levels in support services are historically low (Smith et al., 1994). The reasons for low parental participation in available support services have not been well researched. Previous studies of intervention participation have examined the characteristics of the programs (e.g., Saylor, Elksnin, Farah, & Pope, 1990; Smith et al., 1994) but have ignored the characteristics of the potential participants. This study brought together two important research lines: that pertaining to stress in families whose children have disabilities and that pertaining to whether these families access available support services. The documented elevations in parenting stress in this population might be alleviated or diminished with access to better social supports (e.g., Barakat & Linney, 1992; Hartman et al., 1992). All of the caretakers in this clinical population were offered supportive services, and all reported on their levels of current parental stress and social support. Thus, their self-report and accessive behavior provided an opportunity to more closely examine relations among parenting stress, social supports, and utilization of social support services. The two purposes of this study were to (a) determine predictors of parenting stress in families of children with spina bifida and (b) compare levels of parenting stress and social support in parents who accept versus decline available social support programs.

METHOD Participants Participants were the caretakers (54 mothers, 1 father, 1 grandparent) of children with spina bifida who attended the Spina Bifida Clinic at the Medical University of South Carolina. The population of participants children ranged in age from 1 to 17 years (M = 6.27); 50% were female and 50% were male. Participants were diverse in terms of ethnicity (5% Hispanic or American Indian, 30% African American, 65% White), geographic location (40% rural, 25% urban), family composition (52% single parents), and childrens intellectual functioning (X = 83.7, SD = 15.6). Compared to previously reported samples, this population had a high number of families in low socioeconomic status groups (65% Medicaid, 6% Aid to Families with Dependent Children, 20% Food Stamps). Participants children were variable in terms of medical severity, as measured by ambulation ability (20.4% no bracing, 20.5% ankle-foot orthosis only, 12.2% braces and crutches, 24.5% part-time wheelchair and bracing, 22.4% full-time wheelchair and bracing), bladder control (17.4% continent, 43.5% dry with catheterization, 34.8% wet with catheterization, 4.3% ureterostomy), bowel control (47.8% socially continent, 28.3% infrequent accidents, 23.9% fre-

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quent accidents), and level of lesion (42.0% thoracicL3, 40% L4L5, 18.0% sacral or lipomeningocele). Measures Caregiver stress was measured by the Parenting Stress IndexShort Form (PSISF; Abidin, 1990). The PSISF, of well-established reliability and validity, is a questionnaire consisting of 36 questions measuring life satisfaction and parental attitude toward the child. Parental stress is divided into three factors: (a) parental distress, (b) difficulty of child, and (c) parentchild dysfunctional interaction. Abidin (1990) reported that testretest reliability for the total score was .84, whereas the alpha reliability for the total score was .91. Concurrent validity for the PSISF was determined through correlation with the full-length PSI. This analysis resulted in a correlation of .94 between the total score of the full-length PSI and the total score of the PSISF. Validity of the subscales was supported by significant correlation between appropriate domains of each scale. Perceived support was measured by the Family Support Scale (FSS; Dunst, Jenkins, & Trivette, 1984). This measure is an empirically based, normed, and validated questionnaire for measuring 19 different sources of social support. Caretakers were asked to indicate on a Likert-type scale the degree that each source of social support had helped the family during the past 36 months. Taylor (1995) summarized reliability and validity of the FSS. Testretest reliability was conducted over 1 month and was .47 for the total score. Split half reliability was .75, and internal consistency reliability was .77. Concurrent validity for the FSS was conducted through a correlation with the Questionnaire on Resources and Stress (Holroyd, 1982), and correlations ranged from .14 and .18 and were statistically significant (p < .05). Key demographic indicators of socioeconomic status were obtained from caretaker interview, including income, parental age, and education level, using the Revised Socioeconomic StatusComposite Index (SESComp (R); Aylward, 1997). A Medical Severity Index was calculated by giving a participant 1 point for each of the following medical risk factors: bowel incontinence, bladder incontinence, degree of ambulation, presence of shunt, and level of lesion. This index presumes that a greater number of medical problems is more problematic and places the child at higher risk. Procedure The Caring Connection is a family support program offering group and individual support to children and families with special needs. Two Caring Connection volunteers attended weekly clinics for children and adolescents with spina bifida. A volunteer entered each patients room, introduced herself, explained the goals of the Caring Connection and the purpose of the study, and asked for the caretakers per-

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mission for participation. The study was exempted by the institutions Institutional Review Board from a formal consent, so a signed cover letter was substituted. Initially, in situations where the caretakers could not complete the forms within the allotted time, the volunteer offered an addressed, postage-paid envelope with a request that the completed forms be returned as soon as possible. This option was later discouraged, however, due to the low rate of returned forms. Fifty-six completed forms were received. Another 8 were distributed but not returned. None of the 8 families who failed to return forms provided information for further contact. Thus, none participated in intervention. Regardless of whether caretakers elected to complete the PSI, FSS, and SESComp (R) questionnaires, they were all invited to participate in Caring Connection activities and mailings by providing their names and addresses to the volunteers. Those who provided this information were contacted within 24 hr by the Caring Connection coordinator and were added to the mailing list for announcements, networking, and information. For the purpose of this study, provision of a name and address so families could begin utilizing services was operationalized as participation (vs. nonparticipation or declining of services).

RESULTS Predictors of Parenting Stress Stepwise multiple regression analyses were employed to examine potential predictors of parenting stress. Maternal education, maternal age, SES, childs medical severity, and family social support were entered as potential predictors of the total score on the PSI. Maternal age was the sole significant predictor in this model, b = .50, t(1, 41) = 3.7, p < .001, accounting for 25% of the variance. Older mothers reported more stress. Support Service Participation Analyses of variance were used to examine the differences in parenting stress and social support between those electing to receive support services (n = 42) and those who were not interested (n = 14). For these analyses, participation was operationalized in terms of whether or not support services were actually requested (i.e., whether a name, address, and phone number were provided by the family for further contact from the Caring Connection). Parenting stress factors were measured using the score derived on the factor scale of the PSISF. No difference was found between groups who did participate and those who did not on both parental distress and difficulty of the child (much like temperament). However, a significant difference was found between participants and nonparticipants in the dysfunctional

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parentchild interaction factor score, F(1, 54) = 6.33, p < .02. The mean dysfunctional interaction level of the group of parents who declined support services was 65.4, whereas the mean stress level of the group of parents who participated in support services was 42.3. Finally, total PSI stress score was higher for parents declining support services (M = 63.1), compared to those accepting services (M = 45.3), although the difference was not statistically significant, F(1, 54) = 3.18, p < .08. No differences were obtained between participants and nonparticipants on social support satisfaction (FSS total), mothers age, or mothers education. These comparisons are summarized in Table 1.

DISCUSSION Examination of parenting stress correlates provided confirmation that within this ethnically diverse, primarily low SES population, caregivers with fewer social supports and those whose children evidenced greater impairment reported greater stressors. In addition, it is interesting that caregivers who were older (and caregivers of older children) reported higher levels of stress. Many social support intervention programs target families whose children are newly diagnosed or participating in early intervention programs. These data suggest that the need for such intervention programs might be even greater in caregivers who are older and have experienced the stressors associated with spina bifida for greater periods of time than their younger counterparts.

TABLE 1 Summary of Comparisons Between Parents Electing to Participate in Available Services and Those Declining Participation Participantsa Variable Parenting Stress Index Difficult child Dysfunctional interaction Parental distress Total Family Support Scale Mother age Mother educationc M SD Nonparticipantsb M SD F p

44.5 42.3 43.8 45.3 28.8 32.0 1.8

30.2 29.2 33.6 33.0 11.9 7.5 .7

46.7 65.4 57.1 63.1 25.1 33.8 1.6

27.0 31.0 31.4 30.9 12.5 7.3 .7

.06 6.33 1.69 3.18 1.17 .69 .74

ns .02 ns .08 ns ns ns

an = 42. bn =14. cMother education was coded in categories in .5 increments (.5 = < Grade 9; 1.0 = Grades 910; 1.5 = high school graduate; 2.0 = at least 1 year of college; 2.5 = 2-year degree; 3.0 = bachelors degree; 3.5 = masters degree; 4.0 = professional degree).

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In this study, parental distress and difficulties of child and social support did not coincide with support service participation. The small sample size in this study might account in part for the failure to find significant associations. The relations of stress and social support with intervention might be more complex or different for low SES groups, as has been demonstrated in other studies (e.g., McDowell, Saylor, Taylor, Boyce, & Stokes, 1995). Finally, there might be other mediating factors that have not been identified that could affect these relations. Difference was found between caregivers who requested services and those who did not in the parentchild dysfunctional interaction factor score. Caregivers with the highest levels of dysfunctional interactions with their children were less likely to utilize available support services. Thus, some of the individuals who most need supportthose who have more dysfunctional interactions with their childrenare least likely to take advantage of available support services. Clinicians and practitioners therefore should consider other means of providing support to these families. When parentchild dysfunctional interaction is high, the potential for child abuse might be higher, especially in caregivers with few emotional supports who report a high frequency of stressors. Clearly, ongoing intervention and support are needed to sustain families through the long, stressful journey of raising their children with special needs. More creative and intensive intervention might be needed to reach families who are too overwhelmed to access traditional community supports. A factor to consider in interpreting the results of this study is the nature and size of the sample. Although 88% of the families approached to participate in the study consented to do so by completing the measures, little is known about the 12% (n = 8) who declined participation. Besides the group studied here (i.e., caretakers completing measures vs. those who choose not to participate in services), there might be another portion of the population too overwhelmed or disorganized to even address issues of stress and support. Although this is a representative clinical sample of families of children with spina bifida, the sample might not be reflective of families of children with other developmental disabilities or chronic conditions. Larger samples, in addition to families of other physical and developmental disabilities, would enhance power and generalizability. Finally, future research should address a host of other variables that might relate to a familys distress and service utilization, such as marital discord, substance use, and family composition.

IMPLICATIONS FOR PRACTICE This study indicates that caregivers who experience the most difficulty interacting with their children were the least likely to utilize available services and that parents with fewer social supports experience higher levels of personal distress and overall stress. For the clinician, these findings serve as notice that reaching the families of

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children with special health care needs in greatest need might present substantial challenges. Even when funded programs are available and offered in a person-to-person meeting at the medical center, parents who are most overwhelmed might decline to participate. Furthermore, the parentchild dyads not accessing supportive services, by the parents own report, might be the most dysfunctional in their interaction. It might be that more persistent, encouraging outreach with tangible benefits to engage the uncertain, overwhelmed caretaker will be needed before there is an impact on parental distress. Investigations of caregiving stress suggest that older mothers (and mothers of older children) might be experiencing greater stress than caregivers at earlier stages. There are many interdisciplinary program resources that target younger children with disabling conditions. However, caregivers might need more attentive care later when school systems pick up their children, and the focus is less directed to parent and family needs. Clinical programs that primarily market their services by mailings and flyers might miss connecting with both caregivers who are privately in distress about their childs developmental progress and caregivers who are experiencing a shortage of reinforcing interactions with their child. Parent-to-parent outreach and matching caregivers of children at similar stages might assist in providing a sense that someone else understands and might expose distressed parents to the potential of social support programs to enhance their quality of life. REFERENCES
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