Parental Perceptions of Risk and Protective Factors Associated with ...

Continuing Nursing Education Objectives and posttest can be found on page 292.

Parental Perceptions of Risk and Protective Factors Associated with the Adaptation of Siblings of Children with Cystic Fibrosis Judith O’Haver, Ida M. Moore, Kathleen C. Insel, Pamela G. Reed, Bernadette Mazurek Melnyk, Michael Lavoie

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hen a child is diagnosed with a chronic, life-threatening illness, there is a significant impact on the entire family. Well siblings are at risk for psychological adaptation problems because of their unique relationship with the ill child and the effect of the chronic illness on family functioning (BluebondLangner, 1996; Fanos & Wiener, 1994; Fleitas, 2000; Heiney, Goon-Johnson, Ettinger, & Ettinger, 1990; Mellins & Ehrhardt, 1994; Murray, 1998; Spinetta, 1981; Van Riper, 1999). To date, the majority of studies concerning the consequences of a child’s chronic, life-threatening illness on the family focus on childhood cancer (Clarke-Steffen, 1993; Havermans & Eiser, 1994; Kupst et al., 1995; Van Dongen-Melman et al., 1995). The repercussion of chronic, life-threatening illness with a known genetic basis, such as cystic fibrosis, has seldom been described. The purpose of this study was to investigate the predisposing risk and protective factors

Judith O’Haver PhD, RN, CPNP-PC, is an Assistant Professor, Arizona State University College of Nursing and Health Care Innovation, Phoenix, AZ, and a Pediatric Nurse Practitioner, Phoenix Children’s Hospital, Phoenix, AZ. Ida M. Moore, DNSc, RN, FAAN, is Professor and Director, Nursing Practice Division, College of Nursing, University of Arizona, Tucson, AZ. Kathleen C. Insel, PhD, RN, is an Associate Professor, College of Nursing, University of Arizona, Tucson, AZ. Pamela G. Reed, PhD, RN, FAAN, is a Professor, College of Nursing, University of Arizona, Tucson, AZ.

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When a child is diagnosed with a chronic, life-threatening illness, there is a significant impact on the healthy siblings. Few studies have addressed the adaptation of well siblings in diagnoses other than cancer. The purpose of this descriptive correlational study was to examine the relationships between the risk and protective factors that affect the psychological adaptation of healthy siblings of a child with cystic fibrosis. Findings from this study suggest family environment, especially parental stress and perceived social support, may affect the adaptation of the well sibling. Adolescent well siblings were more at risk for environmental influences than their younger counterparts.

associated with the psychological adaptation of healthy, school-aged and adolescent well siblings of a child diagnosed with cystic fibrosis.

Background and Significance Cystic fibrosis is a terminal, genetic disease. In 2006, the Cystic Fibrosis Foundation reported the mean age of survival for affected persons was 37 years of age. The psychological adaptation of a well sibling of a child diagnosed with a chronic illness, such as cystic fibrosis, is dependent on many factors, both internal and external to the sibling. As a result, the child may be at risk for developing internalizing

behaviors (such as anxiety, depression, somatization) and externalizing behaviors (such as hyperactivity, aggression, conduct problems), or they may adapt by developing protective behaviors (such as adaptability, leadership, social skills). Well siblings of children who have been diagnosed with cancer have been extensively studied; however, there are limited reports on well siblings of children diagnosed with other chronic illnesses. Research has suggested risk factors for well siblings of children with a chronic illnesses that may affect adaptation include lower socioeconomic status (Dunst, 1993; Gore, Aseltine, & Colton, 1992; Hymovich & Roehnert, 1989; VanDongenMelman et.al., 1995), emotional prob-

Bernadette Mazurek Melnyk, PhD, RN, CPNP/NPP, FNAP, FAAN, is Dean and Distinguished Foundation Professor in Nursing, Arizona State University College of Nursing and Health Care Innovation, Phoenix, AZ, and a member of Pediatric Nursing’s Editorial Board. Michael Lavoie, PhD, is a Clinical Psychologist, Phoenix Children’s Hospital, Phoenix, AZ; a Clinical Associate Professor of Pediatrics, University of Arizona Medical School; an Adjunct Faculty Member, Divisions of Clinical, Counseling, and Educational Psychology, Arizona State University; and the Current President, Arizona Neuropsychological Society. Acknowledgment: The authors would like to gratefully acknowledge the funding provided for this project by the University of Arizona and the Beta Upsilon Chapter of Sigma Theta Tau. Statement of Disclosure: The authors reported no actual or potential conflict of interest in relation to this continuing nursing education article.

The Pediatric Nursing journal Editorial Board reported no actual or potential conflict of interest in relation to this continuing nursing education article.

PEDIATRIC NURSING/November-December 2010/Vol. 36/No. 6

lems present in the well sibling before the child with cystic fibrosis was diagnosed, and concurrent stressors (Carter, Urey, & Eid, 1992; Dunst, 1993; Garmezy, 1988; Gore et al, 1992; Hetherington, 1989; Hymovich & Roehnert, 1989; Kupst, 1993). Factors such as social support (Gore et. al., 1992), having a parent care for the well sibling when the child with cystic fibrosis is ill (Knafl & Dixon, 1983), and information from providers directly to well siblings (Fleitas, 2000; Havermans & Eiser, 1994) may be protective and positively affect the psychological adaptation of the well sibling. Additionally, maternal education (Sawyer, 1992), age and gender of the well sibling (Gore et. al., 1992; Kim, Conger, Elder, & Lorenz, 2003; Sahler et al. 1994; Sargent et al., 1995; Van DongenMelman et al., 1995), and severity of the illness of the child with cystic fibrosis (Bluebond-Langer, 1996; Carter et al., 1992) may predict either positive or negative adaptation for well siblings.

Conceptual Framework A risk and protective model was used as the conceptual framework for this study. This model proposed there are identifiable risks and protective factors that relate to the adaptation of healthy siblings of children with cystic fibrosis. An assumption underlying the framework is children exposed to stressors attempt to adapt. This may result in either positive or negative outcomes. Risk was defined as variables that were more likely to be associated with an undesirable outcome. Aday (2001) noted within the concept of risk is the assumption that an adverse, healthrelated outcome could occur. Researchers have suggested the number of risk factors may affect adaptation (Allen, 1998; Kupst, 1993), and adverse effects may potentiate each other, especially if there are chronic stressors (Rutter, 1988). Examples of risk factors found to be significant in families where a child has been diagnosed with cancer include lower socioeconomic status; low level of support; pre-existing, serious psychological problems in a family member; and inadequate resources (Dunst, 1993; Hymovich & Roehnert, 1989; Kupst, 1993; Van Dongen-Melman, 1995). Protective factors may be individual or environmental, may provide resistance to risk, and may lead to outcomes with positive adaptation.

The effectiveness of these factors may differ according to the child’s developmental level, gender, individual characteristics (such as easy temperament and good coping skills), and environmental factors (such as interpersonal relationships and higher socioeconomic status), among others (Allen, 1998).

Research Questions Specific factors were identified based on the review of the literature and the model developed for this study as possibly associated with the adaptation in well siblings of children with cystic fibrosis. The following research questions were formulated to explore relationships among specific variables: • What is the relationship among perception of financial well-being by parents, emotional problems in well siblings prior to the diagnosis of cystic fibrosis in the sick child, parent’s self-perceived stress, parent’s self-perceived social support, and severity of illness for the child with cystic fibrosis on the adaptation of well siblings of children with cystic fibrosis? • What is the relationship among the Emotional Symptoms Index (ESI) reported by the well sibling, the Behavioral Symptoms Index (BSI) reported by the parents, and internalizing and externalizing behaviors in well siblings of children with cystic fibrosis? • What is the relationship between the following variables in well siblings of children with cystic fibrosis and their parents’ report of the well child's internalizing and externalizing behaviors: maternal education, information provided to the well sibling about cystic fibrosis, and parents' presence as caretakers of the well child when the child with cystic fibrosis is ill or hospitalized?

Methods Design This study used a descriptive correlational design to examine the relationships between selected risk and protective factors identified in the literature that may predispose the well sibling of a child with cystic fibrosis to problems with adaptation. A convenience sample of 40 well siblings of children diagnosed with cystic fibrosis was obtained from two cystic fibrosis clinics in three loca-


tions, which encompassed all patients registered in the cystic fibrosis registry in a southwestern state. All siblings of children who attended these clinics were eligible for inclusion in this study if they were a) biologically related, b) between 8 to 18 years of age for two clinics and 8 to 17 years of age in the remaining clinic, c) were able to read and speak English, d) did not have cystic fibrosis , and e) lived with the child with cystic fibrosis at least 50% of the time. Only one sibling was allowed to participate per family. The parent identified which child would participate if more than one met inclusion criteria.

Measures Demographic and health-related information form. The first author developed the demographic instrument for this study. Demographic data consisted of 20 questions (including age and gender of children at home, perception of financial wellbeing). Perception of financial well being was self-reported on a 5-point scale, with “1 = not enough money” and “5 = having enough money to do whatever we want.” Behavioral Assessment System for Children (BASC) instrument. The Behavioral Assessment System for Children (BASC) instrument was used to measure psychological adaptation for children and adolescents in this study. Age-appropriate versions (child, adolescent, parent) of the BASC tool were administered to the well siblings and their parents. This instrument is developmentally sensitive and provides an objective measure to assess risk and adaptive skills. The authors established construct validity based on previous work, historical precedent measuring personality traits and pathological behaviors, and a review of more than 20 behavior and selfreport instruments (Reynolds & Kamphaus, 1998). For the parent version of the BASC instrument, parents report their children’s observed behavior over the past six months. There are two versions of the parent BASC: 1) the child version for children 6 to 11 years of age and consisting of 138 items, and 2) the adolescent version for teens 12 to 18 years of age and consisting of 126 items. Parents are asked to rate the child’s behavior on a 4-point scale, with choices ranging from “1 = never” to “4 = almost always.” Items reflect behaviors in different situations, such as “cries easily” and “forgets things.” Critical items are also identified (such as “Says I want to die or I wish I were 285

Parental Perceptions of Risk and Protective Factors Associated with the Adaptation of Siblings of Children with Cystic Fibrosis

Table 1. Components of BASC Scales Parent Composites

Scales

Child/Adolescent Composites

Scales

Internalizing behaviors

Anxiety Depression Somatization

Clinical maladjustment

Anxiety Atypicality Locus of control Social stress Somatization (adolescent)

Externalizing behaviors

Hyperactivity Aggression Conduct problems

School maladjustment

Attitude to school Attitude to teachers Sensation seeking (adolescents)

School problems

Attention problems

Other problems

Depression Sense of inadequacy

Other problems

Atypicality Withdrawal

Personal adjustment

Relations with parents Interpersonal relations Self-esteem Self-reliance

Adaptive skills

Adaptability Leadership Social skills

Behavior symptom index

Combination of clinical components

Emotional symptoms index

Global personality problems Behavior problems

Source: Reynolds & Kamphaus, 1998.

dead,” “Says I want to kill myself,” or “Threatens to hurt others”). A Behavioral Symptoms Index (BSI), which is an overall measure of problem behavior, is tabulated from a combination of scales from the clinical composites on the parental version of the BASC. The BSI reliability is reported at 0.88 to 0.94 (Reynolds & Kamphaus, 1998). Both the child and adolescent versions of the BASC follow a true/false format. The child version consists of 152 items, and the adolescent version has 186 items. Questions are in statement form, such as “My teacher cares about me” and “No one understands me” in the child version, and “I just don’t care anymore” and “I wish I were someone else” in the adolescent version. Critical items are also identified in these instruments, such as “Nobody likes me” (child) and “No one understands me” (adolescent) “Sometimes I want to hurt myself” (child and adolescent), which are also addressed individually. The Emotional Symptoms Index (ESI) is an overall composite of scores based on self-report scores of the child and adolescent version of the BASC, and it provides an indication of global personality and behavior problems (see Table 1). This score is sensitive to 286

internalizing behaviors and is an indicator of emotional difficulties. Coefficient alpha reliabilities for the ESI have been reported at greater than 0.95 for children and adolescents (Reynolds & Kamphaus, 1998). Coefficient alpha reliabilities for the instruments in this sample were acceptable and are reported in Table 2. Data for the BASC were analyzed with the statistical software purchased for the BASC instrument and then entered into SPSS. Multidimensional Scale of Perceived Social Support. The Multidimensional Scale of Perceived Social Support (MSPSS) consists of 12 items divided into three factor groups (family, friends, significant others) that relate to the source of the social support (Zimet, Dahlem, Zimet, & Farley, 1988). For each category, four questions address the respondent’s feelings regarding the support offered by the person(s) named in the question. Seven choices range from “1 = very strongly disagree” to “7 = very strongly agree.” Scoring is based on means derived from the responses for the three subscales and the total of all 12 items (personal communication, G. Zimet, October 12, 2005). The MSPSS was validated on four samples of adults. Cronbach’s coefficient alpha

values ranged from 0.81 to 0.94. Factor analysis was also conducted and reported. Items were specific for their intended factors, with minimal cross loading indicating that the subjects were able to differentiate the source of their support (Zimet et. al., 1988; Zimet, Powell, Farley, Werkman, & Berkoff, 1990). In this sample, Cronbach’s alpha coefficients were 0.98 for the total scale and 0.98 for the subscales. The Perceived Stress Scale. The 10-item Perceived Stress Scale (PSS10) was used to measure the degree to which the parent perceives that life events are stressful (Cohen & Williamson, 1988). The construct validity of the 10-item scale has been supported through factor analysis. In the PSS10, parents are asked 10 questions about their feelings and thoughts over the past month. Items include statements such as “In the last month, how often have you felt that you were on top of things?” The choices range from “never” to “very often.” PSS scores are calculated by summing across items to achieve a mean score. Possible scores range from 0 to 4, with higher scores indicating more stress. Cronbach’s alpha with this sample for the PSS was 0.91.


Table 2. Reliability Coefficients of Instruments Used in this Sample n

Cronbach’s Alpha

Number of Items

Child

17

0.690

13

Adolescent

23

0.743

11

Child

17

0.765

10

Adolescent

23

0.597

10

Child

17

0.373

11

Adolescent

23

0.758

14

Instrument BASC Externalizing behaviors Aggression

Hyperactivity

Conduct

Internalizing behaviors

Procedure

Anxiety Child

16

0.828

11

Adolescent

23

0.777

10

Child

17

0.814

12

Adolescent

23

0.754

11

Child

17

0.543

13

Adolescent

22

0.793

12

14

0.322

7

Child

17

0.831

11

Adolescent

23

0.890

12

Child

17

0.837

14

Adolescent

22

0.906

12

39

0.912

10

Friend subscale

39

0.982

4

Family subscale

40

0.975

4

Significant other subscale

39

0.979

4

Total scale

38

0.981

12

Depression

Somatization

Adaptability Adaptability (child) Leadership

Social skills

Perceived Stress Scale

Severity of illness. Severity of illness of the child with cystic fibrosis was determined by a chart review of the severity of disease and number of hospitalizations or exacerbations. Severity of disease was coded according to FEV1 (a measurement of lung function that is an estimate of assessing airway obstruction) and was obtained if the child was able to participate during clinic visits. Classification was based on values used in the cystic fibrosis clinic by the medical director, with mild disease as greater than 70% lung function, moderate as 40% to 70%, and severe as less than 40% (personal communication, P. Radford, October 18, 2005). Z scores were calculated for FEV1, exacerbations, and hospitalizations, and the sums of these scores were used to develop a severity of illness composite score.

MSPSS

Source: O’Haver, 2007.


Institutional Review Board approval was obtained from the three institutions that participated in the study. Clinic personnel reviewed the scheduled appointments, identified eligible well siblings, and asked the families at the clinic visit if they would be willing to discuss the study with the researcher. If the parent agreed to participate, they were asked to sign a written consent form and Health Insurance Portability and Accountability Act (HIPAA) release for the researcher to review the chart of the child with cystic fibrosis. They were then asked to complete the study instruments. If the well siblings were present and the parent agreed, the well siblings were asked to participate and sign an assent form according to institution policy. They were then asked to complete the child/adolescent BASC appropriate for age. If the sibling did not accompany the child with cystic fibrosis to the visit, the parent/guardian was asked to complete the parental portion of the survey, and the instruments and assent form were sent home with the parents with a self-addressed stamped envelope for its return. If the institution allowed telephone assent, well siblings were contacted by phone at a mutually agreed upon time to discuss the study and assist with the instrument completion if the well sibling agreed to participate. The well sibling determined if she or he preferred to complete the questionnaire independently or verbally over the phone to the researcher. Each participant received a $5 gift certificate. Results of each completed BASC instrument were discussed with a clinical psy287

Parental Perceptions of Risk and Protective Factors Associated with the Adaptation of Siblings of Children with Cystic Fibrosis

Table 3. Demographic Information of Well Siblings

Severity of Illness n (%)

Variable Children 8 to 11 years old

17 (42.5%)

Adolescents 12 to 17 years old

23 (57.5%)

Males

23 (57.5%)

Female

17 (42.5%)

No medical problems in the past 2 years

18

No behavioral problems prior to diagnosis of cystic fibrosis

35 (89.7%)

(45%)

Table 4. Scores for the Multidimensional Scale of Perceived Social Support (MSPSS) N

Minimum

Maximum

Mean (SD)

Subscale total friends

40

1.00

7.00

5.09 (2.00)

Subscale total family

40

1.00

7.00

5.12 (2.01)

Subscale total significant other

40

1.00

7.00

5.30 (2.03)

Total instrument

40

1.00

9.26

5.32 (1.96)

Source: O’Haver, 2007.

Table 5. Significant Spearman rho Correlation Coefficients between Selected Variables (rho = N-2) Total MSPSS

Total PSS

NS

-0.53(38) **

-0.36(37)*

NS

Composite illness

NS

NS

BSI for all participants

NS

0.36(38)*

-0.56(21)**

0.54(21)**

NS

NS

Making ends meet Emotional problems in well sibling prior to diagnosis of cystic fibrosis

BSI for adolescents only BSI for children only

Findings Sample A total of 44 parents consented to participate in this study during their clinic visit. Forty parents and 31 well siblings returned the surveys and were included in this analysis. One set of 288

Demographic and HealthRelated Information Form The 40 well siblings whose parents participated ranged in age from 8 to17 years, with a mean of 12.16 years (SD = 2.66). Demographic characteristics are reported in Table 3. Parents reported the cystic fibrosis team had never discussed cystic fibrosis with the well sibling for 75% (n = 30) of this sample. Four children were reported to have had this discussion once (10%), and 4 (10%) children had this discussion when there was a change in health status of the child with cystic fibrosis. Two parents (5%) reported this discussion occurred at most visits. Parents were asked to list the behavioral or emotional problems of the well sibling prior to the diagnosis of cystic fibrosis in their brother or sister. Four of the 39 parents who responded indicated that problems existed in the well sibling prior to the cystic fibrosis diagnosis. These problems were identified as anxiety disorder and depression (n = 1), vocal tic (n = 1), bedwetting (n = 1), and anger and frustration (n = 1).

The Perceived Stress Scale

*Correlation is significant at the 0.05 level (2-tailed). **Correlation is significant at the 0.01 level (2-tailed). Notes: NS = not significant; MSPSS = Multidimensional Scale of Perceived Social Support (reported by parents); PSS = Perceived Stress Scale (reported by parents). chologist who specializes in pediatrics. Recommendations based on the results of the individual testing were communicated to parents by phone by the researcher if warranted.

Classification of lung compromise was available for 37 children with cystic fibrosis. Thirty-three of the affected children (82.5%) were classified as mild, 3 (7.5%) with moderate (40% to 70%) lung function, and 1 (2.5%) with less than 40% lung function.

surveys were answered for each well sibling. Parents were allowed to discuss the answers prior to selection between themselves. No demographic data were available for the children of the four parents who consented but did not return the completed surveys, and they were not included. Parents reported years of completed schooling for the mother ranged from 10 to 18 years, with a mean of 14.5 years (SD = 2.01; n = 38). Financial wellbeing was assessed on a 5-point Likert scale. The mean score for this sample (n = 40) was 3.63 (SD = 0.84).

For the total sample, reported perceived stress scores of parents in the past month ranged from 4 to 35, with a mean of 14.7 (SD = 7.26). Parents also reported on social support from their family, friends, and significant other. The mean of the subscales in this sample ranged from 5.09 to 5.30, and the total scale was 5.32 (see Table 4).

Research Questions Research question #1. To determine if selected factors were associated with adaptation in the well siblings of children with cystic fibrosis, the relationships among several variables were explored and are summarized in Table 5. Spearman rho statistics were used. For parents, total stress and financial well-being were significantly negatively associated (rs [38] = -0.53, p < 0.01) as were emotional problems in well siblings prior to the diagnosis of cystic fibrosis and parental perceived social support (rs [37] = -0.36, p < 0.05). Specifically, parents with


Table 6. Correlation of BSI and ESI and Their Relationship with Internalizing and Externalizing Behaviors Variables Spearman rho (rs)

Child

Adolescent

BSI and ESI

(n = 13) 0.18

(n = 14) 0.57*

ESI and internalizing

(n = 13) 0.43

(n = 14) 0.52*

ESI and externalizing

(n = 13) -0.08

(n = 14) 0.30

* Correlation is significant at the 0.05 level (2-tailed).

higher total stress scores perceived less financial well-being, and parents who reported children with emotional or behavioral problems prior to the diagnosis of cystic fibrosis in the sick child had less social support. A significant positive association was also noted between total stress in the parent and the combined BSI score for well siblings (rs [38] = 0.36, p < 0.05). When calculated as individual wellsibling groups (school-aged children and adolescents), this correlation was not significant for the children but remained significant in the adolescent group between BSI and the parental report of perceived stress (rs [21] = 0.54, p < 0.01) and perceived social support (rs [21] = -0.56, p < 0.01). These findings indicate parents who had higher stress scores reported adolescents with greater behavioral symptoms, and parents with adolescents with greater behavioral symptoms perceived they had less social support. No other significant correlations were found. Research question #2. The relationship between parental reports of internalizing and externalizing behaviors in well siblings of children with cystic fibrosis and overall problem behavior as evidenced by the BSI was compared to the child self-report of global personality and behavioral problems as evidenced by the ESI. Additionally, the relationship between the internalizing and externalizing behaviors’ subscales and the ESI was examined. For well siblings who were children in this sample, BSI was not significantly related to the ESI. This indicated the parental report of problem behavior did not demonstrate a relationship with behavior problems reported by the children. Furthermore, no significant correlation was found between the ESI and internalizing behaviors or externalizing behaviors. For adolescents, a significant correlation was found between the BSI and the ESI (rs [12] = 0.57, p < 0.05). There

was also a significant relationship between the ESI and internalizing behaviors, but the relationship was not significant between the ESI and externalizing behaviors (see Table 6). Research question #3. The relationship between the presence of a parent as a caretaker for well siblings when the child with cystic fibrosis is ill or hospitalized and information provided by the medical team to the well sibling about cystic fibrosis with internalizing and externalizing behaviors was also investigated. In this sample, 31 (n = 40) of the well siblings were cared for by a parent when the child with cystic fibrosis was in the hospital at least some of the time. One parent responded that someone other than a parent took care of the well sibling when child with cystic fibrosis was ill. Parent as a caretaker when the child with cystic fibrosis was hospitalized was not significantly correlated with internalizing or externalizing behaviors. There was a significant negative correlation between externalizing behaviors of the well sibling when there had been a discussion about their brother or sister with cystic fibrosis with the medical team (rs [15] = -0.51, p < 0.05) in that when discussion occurred, there were less negative behaviors reported by the parents. This relationship was not found for externalizing behaviors in adolescents (rs [21] = -0.24, p > 0.05). The discussion did not have a significant relationship with either children or adolescents and their reported internalizing behaviors. Additionally, years of maternal education was not significantly correlated to internalizing or externalizing behaviors in the well siblings.

Discussion This study proposed the psychological adaptation of well siblings of children with cystic fibrosis would be affected by certain psychological and


environmental factors. In this sample, adolescent well siblings were more affected by the family environment than younger siblings. Parental stress and lack of social support were risk factors for the adolescent sibling’s adaptation. Parents were negatively affected by financial worries and behavioral problems in their well children prior to the diagnosis of cystic fibrosis in the sick child, which may have had an impact on the adolescent sibling’s adaptation. Parental report of internalizing behaviors and the BSI in the adolescent siblings were related, which suggests the parent may perceive some of the actual feelings of their adolescents. Younger adolescents exhibited more internalizing behaviors than their older counterparts, which suggests that adaptation may be age dependent. A protective factor in children appears to be the discussion with the medical team about the cystic fibrosis diagnosis. Major findings from this study suggest sibling adaptation when a child in the family has cystic fibrosis is influenced by the parental report of perceived stress and perceived social support. In this study, parental report of higher stress was associated with a lower perception of financial wellbeing. Emotional and behavioral problems in well siblings prior to the diagnosis in the child with cystic fibrosis were associated with less reported social support for the parents. In addition, there was a significant positive relationship between adolescent siblings’ BSI and parental stress, and a significant negative relationship between adolescent well siblings’ BSI scores and social support. The adolescents’ reported behavior was highly related to their parents’ reported stress and perceived social support. The relationship between increased parental stress and less social support for parents resulting in a poorer adaptive response in well siblings suggests parental influence may affect the adaptation of the well sibling in the household. Sloper and White (1996) suggested problems exhibited by well siblings may be in part due to the degree of disruption in daily family life, the resources available to cope with the disruption, and the well siblings’ perception of the effects of this illness on their daily lives. The children with cystic fibrosis in this sample were generally well. The relationships among their illness, the presence of the parent as a caretaker for the sibling during hospitalizations for the child with cystic fibrosis, and the adaptation of 289

Parental Perceptions of Risk and Protective Factors Associated with the Adaptation of Siblings of Children with Cystic Fibrosis the well sibling may have been affected by the relative lack of disruption in their daily lives. Additionally, this was a well-educated population of mothers, so it is difficult to generalize the findings to families where the mothers may not have had as much schooling. In this study, only the adolescent report of ESI was correlated to the parental report of the BSI. Internalizing behaviors reported by parents for adolescents were also correlated to the ESI. For well siblings who were children in this sample, there was no significant relationship between the self-report with the report given by their parents for the BSI or for internalizing or externalizing behaviors. Results of this study support the suggestion by other authors that parents are not often aware of the well siblings’ perception of their situation (Craft & Craft, 1989; Houtzager, Grootenhuis, Caron, & Last, 2005). Houtzager and colleagues (2005) suggested parental psychological well-being may affect their perception of the well child’s behavior; what they report in their children may be a reflection of their own worries. Multidisciplinary teams care for the children and their families in the clinics studied; therefore, it was surprising that 75% of the well siblings had never spoken to the medical team about their brother’s or sister’s illness. For the children who had this discussion with providers, the significant negative correlation with their externalizing behaviors suggests those children may have benefitted from the discussion. This is supported by the earlier work of several authors who have suggested well children want information about their sick sibling’s illness and may benefit from discussion (Fleitas, 2000; Havermans & Eiser, 1994; Williams et.al., 1997).

Limitations This cross-sectional study was based on a convenience sample of participants whose children with cystic fibrosis were in generally good health and attended outpatient clinics during the data collection period. This limits generalizability of the results. Families who participated may have differed from those that refused or did not attend clinic. Issues, such as blended families, parents with psychological problems, and support systems for the children other than their parents, were not explored and could have impacted the results. All that can be concluded is that there is an association among 290

certain variables in this sample of parents and siblings of children with cystic fibrosis.

Implications for Research and Nursing Practice Although more research is needed with larger samples, preliminary implications can be identified. Further investigation may assist in the development of specific interventions designed to provide information to the well sibling, address communication and priority setting, and foster decision-making and coping skills to assist these families in promoting the well-being of all family members. Asking families what is needed is crucial to the success of any intervention. Children diagnosed with chronic disease have an impact on their well siblings. The needs of well siblings may be overlooked, which can place them at risk for successful adaptation to their environment. Nurses can be instrumental in providing support to these children and advocating for their needs. Parental stress and social support should be part of the multidisciplinary assessment. In parents with increased stress and lack of support, either emotional or financial, additional resources may be needed which may also indirectly support the siblings. Early identification of problems may assist the family with overcoming obstacles and promote a higher quality of mental as well as physical health. Advances in the treatment of cystic fibrosis have led to increased longevity for these patients. Well siblings may have additional concerns extending into adulthood as their brother or sister with cystic fibrosis becomes more ill, and they may need additional support and care. A longterm goal is to provide theory-based interventions designed to support decision making and provide resources for families who live the reality of caring for their child with cystic fibrosis. References Aday, L.A. (2001). At risk in America (2nd ed.). San Francisco: Jossey-Bass Publishers. Allen, J.R. (1998). Of resilience, vulnerability, and a woman who lived. Child and Adolescent Psychiatric Clinics of North America, 7(1), 53-71. Bluebond-Langner, M. (1996). In the shadow of illness. Princeton, NJ: Princeton University Press. Carter, B.D., Urey, J.R., & Eid, N.S. (1992). The chronically ill child and family stress. Psychosomatics, 33(4), 397402.

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