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Home > Library > Family Functioning and Hope in Children With Juvenile Rheumatoid Arthritis |
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ABSTRACT
Purpose: To examine the relationships among family functioning, hope, and quality of life in children with juvenile rheumatoid arthritis (JRA). Study Design and Method: Sixty-eight children (8 to 12 years of age) with a diagnosis of JRA and one of their parents/guardians participated in this descriptive correlational study. Parents completed the Feetham Family Functioning Survey (FFFS), the Parent Report for Children Pediatric Quality of Life Inventory (PedsQL), and the Parent Report for Children PedsQL Rheumatology Module. The children completed the Children’s Hope Scale (CHS), the Child Report for PedsQL, and the Child Report PedsQL Rheumatology Module. Data were analyzed using chi-square, t-tests, and correlation analyses. Results: Family functioning and children’s hope showed a negative correlation, indicating that a child’s hope was lower when the parent reported greater dissatisfaction with family functioning. Hope was not related to parent or child ratings of the child’s quality of life. Clinical Implications: In caring for children with JRA, nurses can assess the family’s satisfaction with relationships to the broader community, subsystems, and individual members and seek ways to promote healthy family functioning. Nurses also can assess the level of hope in children with JRA and facilitate the development of hopefulness by helping children establish goals and develop strategies to meet them.
Children with chronic illnesses are at risk for developing psychosocial difficulties such as behavior problems, hopelessness, poor self-concept, and social withdrawal (Holden, Chmielewski, Nelson, & Kager, 1997). Their illness can negatively affect their ability to successfully complete important psychosocial developmental tasks (Eiser & Berrenberg, 1995). Juvenile rheumatoid arthritis (JRA) is the most common chronic pediatric rheumatic disease and the leading cause of childhood disability (McCarty & Koopman, 1993). Although the actual frequency of JRA is unknown, it is estimated that approximately 285,000 children in the United States have some form of arthritis (Arthritis Foundation, 1999). Children with JRA commonly experience acute and chronic pain, decreased mobility, excessive stiffness, growth retardation, frequent visits to the doctor, restrictions on age-appropriate activities, and school absenteeism. The trajectory of JRA is often unpredictable but most often follows a fluctuating course with periods of flare and quiescence. These events place children with JRA at an increased risk for psychological problems (Wallander & Varni, 1998), depression, and the disruption of healthy family functioning. Although spontaneous remission or recovery from JRA may occur as the child reaches adolescence and adulthood, psychological scars may still be present. The chronic nature of JRA, the unpredictability of painful episodes, and the lack of control over the course of the disease create stressors for the child and the family and may have a negative effect on children’s hope and quality of life (QOL). QOL is a construct reflecting individuals’ subjective evaluation of their physical health, mental health, and social functioning. Assessment of children’s QOL is typically based on reports from children or parents, but parents and children do not always agree on the child’s QOL. Lack of agreement between child and parent reports of QOL has been documented in children with asthma (Guyatt, Juniper, Griffith, Feeny, & Ferrie, 1997), cystic fibrosis (Czyewski, Mariotto, Bartholomew, LeCompte, & Sockrider, 1994), and cancer (Varni, Katz, Colegrobe, & Dolgin, 1995). Furthermore, reported QOL does not always correspond to indices of disease severity (Juniper, 1995;Schipper, Clinch, & Olweny, 1996), suggesting that other factors such as the family environment may influence QOL. Family functioning is significantly related to children’s mental health (Guyatt et al., 1997). To date, however, there is little information about the influence of family functioning on the other domains of children’s QOL, such as physical, emotional, social, and school functioning, or on a chronically ill child’s level of hope. This study had two aims: to assess the relationships among family functioning, hope, and QOL in school-age children with JRA, and to examine the relationship between parents’ and children’s reports of the child’s QOL. Methods
Sample
Sixty-eight children and a parent/guardian of each child participated in the study. Power analysis, using methods described by Cohen (1992), had determined that a sample size of 67 subjects would be adequate to detect a medium effect size between parent and child reports of QOL for the PedsQL and the PedsQL Rheumatology Module, using a paired t-test at p = .05. Instruments
The FFFS measures the family’s response to a child with a chronic health condition and also to normal children. The 25-item scale was designed to assess three major family functions: (1) relationship between the family and broader social units, such as schools and work outside the home; (2) relationships between the family and its subsystems, including the division of labor, such as housework; and (3) relationships between the family and the individual, focusing on the reciprocal relationships between husband and wife and between parents and children (Roberts & Feetham, 1982). Each question includes a stem item, followed by three questions: (a) How much is there now? (b) How much should there be? (c) How important is this to you? Each question is rated on a 7-point Likert scale which ranges from 1 = little to 7 = much. The scoring system enables one to evaluate an individual’s dissonance or dissatisfaction among or within the three major areas of family relationships (Roberts & Feetham, 1982). A higher score indicates greater discrepancy between desired and present functioning. Recent internal consistency reliability estimates have been .78 to .80 (Youngblut & Shiao, 1993). The developer of the instrument reported reliability of .85 in the 25-item instrument (S.L. Feetham, personal communication, April 17, 2003). Internal consistency reliability for this study was .83. The Children’s Hope Scale (CHS) is a six-item self-report measure based on the premise that children are goal-oriented and that their goal-directed thoughts can be understood according to agency and pathways. Three of the six items reflect agency thinking (e.g., “I think I am doing pretty well”) and three reflect pathways thinking (e.g., “When I have a problem, I can come up with lots of ways to solve it”). The agency subscale taps an active orientation about goals and the future; the pathways subscale measures a discovery perspective about finding ways to reach one’s goals under ordinary and extraordinary circumstances. The total CHS score is achieved by adding the responses to the six items, with “None of the time” equalling 1 and “All of the time” equalling 6. Higher scores represent a higher level of hope as reflected in frequency of agency and pathways thoughts. The CHS has been validated for use with children ages 7 to 16. Internal reliabilities for the CHS total score ranged from 0.72 to 0.86 (Snyder at al., 1997). Internal reliability for this study was .76. Parents’ ratings of the degree to which the six items described their child’s thinking and their children’s ratings were moderately correlated at the beginning of the study (r = 0.38) and 1 month later (r = 0.37), supporting test-retest stability and convergent validity. QOL was demonstrated with four measures to assess both child self-report and parent proxy report, two measures to assess the core dimensions of health, and two measures to assess disease-specific QOL. The Pediatric Quality of Life Inventory Version 4.0 (PedsQL 4.0) measures health-related quality of life (HRQOL) as determined by the World Health Organization as well as school functioning. The 23-item PedsQL Generic Core Scales include: Physical Functioning, Emotional Functioning, Social Functioning, and School Functioning. Response choices range from “Never,” which equals 0 to “Almost always” which equals 4. Items are reverse-scored and linearly transformed to a 0 to 100 scale, so that higher scores indicate better HRQOL. Content validity was established through known group comparisons and correlations with other measures of disease burdens. The PedsQL self- and proxy report distinguished between children with and without a chronic illness and within the group of children with a chronic illness (Varni, Seid, & Rode, 1999). Internal consistency reliability of the PedsQL 4.0 has been excellent ([alpha] = .90) in previous studies and was even higher in this study (self-report [alpha] = .96, parent proxy report [alpha] = .96). The PedsQL Rheumatology Module Version 3.0 is a 22-item questionnaire that measures problems associated with rheumatic illness: Pain and hurt, Daily activities, Treatment, Worry, and Communication. Response choices and scoring is the same as for the PedsQL 4.0, and higher scores indicate better HRQOL with a rheumatic illness. Adequate content validity and reliability ([alpha] = .83) have been reported (Varni, Seid, & Kurtin, 1999), and internal consistency was very high in this study (self-report [alpha] = .95, parent proxy report [alpha] = .96). Study Procedures
Children 8 to 12 years of age with a diagnosis of JRA and one of their parents/guardians were recruited from two ambulatory care rheumatology clinics at a primary care center in a large city and a tertiary care center in another large city. The institutional review board from each site approved the study protocol. A registered nurse in the rheumatology clinic was educated in informed consent procedures and data collection protocols and worked with the researcher in recruitment and data collection. Families meeting the inclusion criteria were approached during their rheumatology clinic appointments. All who were approached agreed to participate. After parental consent and child assent were obtained, data collection took place at the same clinic visit. Parents completed a written demographic information form, the FFFS, the Parent Report for PedsQL, and the Parent Report for Children Ped-sQL Rheumatology Module. Children were verbally administered the CHS, the Child Report PedsQL, and the Child Report PedsQL Rheumatology Module. Data Analysis
Data were analyzed using SPSS, Chicago, IL, Graduate Pack for Windows (Version 11.0). Descriptive statistics (means, standard deviations, and ranges) were used to summarize demographic characteristics and illness-related variables. Pearson product-moment correlations were used to determine the relationships among family functioning, hope, and QOL of children with JRA. Student’s t-test was used to test for parent-child differences in ratings of the child’s QOL. Results
The sample was representative of the overall population of clients in both rheumatology clinics. The majority of the parents were female (81%, n = 55) and married (75%, n = 51) and worked full time (53%, n = 36). They were predominantly Caucasian (94%, n = 64), with 6% (n = 4) identified as Hispanic. They averaged 39.2 years of age (SD = 5.73) and had a median income of $35,000 to $49,999 (18%, n = 12). The children were on average 9.8 years of age (SD = 1.72) and were predominantly Caucasian (91%, n = 62) and female (69%, n = 47). Time since they had been diagnosed with JRA ranged from 0 (studied at initial diagnosis) to greater than 10 years. Twenty-eight percent (n = 19) reported being diagnosed from 1 to 3 years and 27% (n = 18) reported being diagnosed from 6 to 10 years of age. Table 1 shows the means and range of scores on the instruments. The families’ responses were normally distributed and showed good variation across the range of possible scores. Parents who were married reported higher satisfaction with family functioning. There were no other significant relationships between demographic variables and instrument scores.
Higher scores on the FFFS, indicating a larger discrepancy between desired and actual family functioning, were correlated with lower scores on the CHS, as shown in Table 2. This modest negative correlation (r = –.35, p <.05) indicated that children’s hope was lower in the presence of greater family dysfunction. There were no relationships between family functioning and the general or illness-specific measures of child QOL for either parent or child. In addition, there were no relationships among the subscales of QOL, subscales of family functioning, and hope. The Parent Report for Children and Child Report on the PedsQL and Rheumatology Module were correlated and were not significantly different (PedsQL t = –.235, p >.01; PedsQL Rheumatology Module t = .237, p >.01).
Assessment of pediatric QOL ought to encompass physical functioning, emotional functioning, social functioning, and school functioning. Discussion
In this study, family functioning did not appear to affect either general or illness-specific QOL for children with JRA, but family functioning was related to the degree of hope these children expressed. This is the first time these relationships have been studied. Family functioning is an important factor that is related to the nursing care of children with a chronic illness. Hamlett, Pellegrini, and Katz (1992) reported that family functioning and maternal social supports were significantly related to children’s adjustment to asthma and diabetes. Johnson (1994) also highlighted family functioning as an important factor influencing regimen adherence and adjustment outcomes in children with insulin-dependent diabetes. In one study of children with JRA, children experienced a more depressed mood, greater anxiety, and a poorer self-concept in the domains of goal setting and achievement of developmental tasks than healthy children (Timko, Stovel, Moos, & Miller, 1992). The findings of this study highlight the importance of assessing family functioning and the relationship to the child’s perceived sense of hopefulness and QOL. It is likely that a child who possesses a higher sense of hopefulness may be better able to adjust to the demands of the illness, including the achievement of developmental tasks and disease self-management. The agreement in this study between parents and children on the child’s QOL was unexpected, as previous studies have found parents and children had somewhat different perceptions of children’s QOL and functional abilities (Eiser & Morse, 2001;Sawyer et al., 2000;Varni, Seid, & Kurtin, 1999). The level of parent-child agreement may have been increased by recruiting families from a disease-specific specialty clinic. Children and families attending a rheumatology clinic are encouraged to ask questions about the disease process and trajectory. This encouragement may improve communication between the child and parent about how the child is doing, resulting in parents’ more accurate knowledge of a child’s QOL. Several limitations of this research must be noted. Although a few researchers have used observational measures to study family functioning (Goldberg, Washington, Morris, Fischer-Fay, & Simmons, 1990;Stark, Powers, Jelalian, Rape, & Miller, 1994), other research findings like those in this study have been based on parents’ and children’s perceptions of their own, their child’s (for parents), and their family’s functioning. Although self-report measures are convenient and brief, social desirability and parents’ emotional state may have affected their reports of their family’s functioning. Use of a single family member is another limitation when measuring certain aspects of family functioning, such as, “the amount of discussion of your concerns and problems with your spouse” or “the amount of help from your spouse with family tasks such as care of children, house repairs, household chores, etc.” Responses will depend on each partner’s unique perception. Family functioning may be affected by life-changing events such as a job change, divorce, or move, which were not measured in this study. These life-changing events may foster a decreased sense of hope in the child with a chronic illness. Another factor not measured here is the family’s cultural values and belief system, which may be a source of strength for the family. A strong family belief system may facilitate family coping through increased social support, shared values, and positive family and social expectations (Walsh, 1998), which in turn may increase hopefulness in children. This study should be replicated with families of children with other chronic illnesses and should compare families who have access to a specialty clinic to those who do not, as specialty clinics may offer more psychosocial support. The impact of life events, family belief systems, and cultural differences on children’s hope and family functioning merits study. In addition, longitudinal research is needed to further understand the interactions between normal developmental variations and those produced by the presence of a chronic illness in children and families. Clinical Implications
Nursing assessment of families often focuses on the assessment of family structure but not family functioning. However, the assessment of family functioning, including the family’s relationships to the greater community, subsystems, and individuals, is an essential first step in using an Individualized Family-Centered Developmental Care approach. This care model takes into account individual and family needs within the context of the micro and macro environment and seeks to minimize the impact of illness and other stressors on child development. In this approach to nursing assessment and care, the nurse conducts a thorough assessment of environmental stressors and child responses and plans individualized interventions that minimize family stressors and maximize resources to promote positive family functioning, potentially enhancing the child’s sense of hope and QOL. These interventions may also empower the family and enhance the QOL of the family (Hartley & Fuller, 1997). Nurses may also influence parents’ perception of the child’s illness-related QOL by providing them with relevant information, reinforcing disease-specific knowledge, and encouraging them to express their feelings and concerns regarding their child’s illness with each other and with the nursing and medical staff. Open communication between nurses and families helps nurses to understand what works best to promote healthy family functioning. In communicating their thoughts and feelings about a child’s illness and care, families may find it difficult to separate the impact of certain JRA-related events on a child’s QOL from the impact of the overall chronic illness experience. Specific JRA-related problems are often manifested in the child’s decreased physical functioning, social and affective challenges, and school absenteeism. These aspects of a child’s life may be easily assessed in the clinical setting utilizing the PedsQL. Assessment of the QOL of a child with JRA using a standard measure with both parent and child may facilitate the dialogue among the parent, child, and interdisciplinary healthcare team (Wallander & Thompson, 1995). In addition to assessment of family function and QOL, assessing a child’s hope within the clinical setting is a first step toward developing family-based and individual interventions. “Nursing is accountable for managing the response to actual or potential health problems and hope is one potential response that can fortify psychological and physiological defenses against illness” (McGee, 1984, p. 43). Nurses are charged with fostering and preserving hope (McGee, 1984) and are in a strategic position to do this in holistic interactions with children and their family members. Although nurse researchers have examined hope in a variety of adult clinical populations (Farran & Popovich, 1990;Herth, 1990), formal clinical assessment of children’s hope is in its infancy. The measure of hope used in this study was a reflection of the child’s confidence in his or her ability to reach goals and solve problems. If nurses and families can find ways to help children with JRA work on goal-setting and problem-solving activities to help the child attain personal goals and developmental milestones, the child’s sense of hopefulness and QOL may be enhanced. To date, much of what is believed to be true about family functioning of children with JRA has been generalized from research on mothers of children with other types of chronic illness. However, assessing the functioning and specific needs of families of children with JRA is the first step toward developing appropriate interventions to encourage the child’s sense of hopefulness and QOL. Suggested Clinical Implications
[white square] Nurses may increase congruence between children’s and parents’ perceptions of the child’s ill-ness by providing relevant information, reinforcing knowledge, and encouraging them to express their feelings and concerns.
[white square] Assessment of areas of family functioning should include the relationships between the family and broader community, the relationships between the family and its subsystems, and the relationships between the family and each individual.
[white square] Assessment of pediatric quality of life ought to encompass physical functioning, emotional functioning, social functioning, and school functioning.
[white square] Children are able to set and achieve goals and thus increase their sense of hopefulness. Nurses may facilitate this process by working with children to establish goals and develop strategies to meet the goals.
[white square] For more information about juvenile rheumatoid arthritis, go to www.arthritis.org .
Acknowledgments
Funding for this research was from Sigma Theta Tau International, Beta Zeta At-Large Chapter, University of Massachusetts Amherst (Amherst, MA). References
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The January/February, March/April, and May/June 2004 issues of MCN: The American Journal of Maternal/Child Nursing were awarded the Silver Award and Bronze Awards by The American Society of Healthcare Publication Editors. Margaret Comerford Freda, EdD, RN, CHES, FAAN, MCN Editor, and Jenny L. Burroughs, MCN Designer, were recognized for their selection and use of cover art that depicted the issue’s feature article: “Living on the Edge: The Current Phenomenon of Self-mutilation in Adolescents” by Anne Derouin, MSN, RN, CNP, and Terrill Bravender, MD, MPH. This is the second ASHPE Silver Award for Dr. Freda and Ms. Burroughs. Kathleen Rice Simpson, PhD, RN, FAAN, was recognized for her ongoing Perinatal Patient Safety Column, specifically, the “Management of Oxytocin for Labor Induction and Augmentation” and “Terbutaline and Methergine in Look-Alike Packaging” articles that published in the March/April and May/June issues, respectively. ASHPE holds these awards yearly to enhance the knowledge and skills of healthcare publication editors and to reward excellence in publication development and editorial performance. Lippincott Williams & Wilkins is proud of these talented individuals and congratulates them on their achievement. Key Words: Family nursing; Hope; Child; Arthritis, juvenile rheumatoid |
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