Journal of Pediatric Psychology 29(3) pp. 231-240, 2004
Journal of Pediatric Psychology vol. 29 no. 3 © Society of Pediatric Psychology 2004; all rights reserved
Psychometric Properties of a New Measure of Fathers' Involvement in the Management of Pediatric Chronic Diseases
1 Division of Psychology and Psychiatry, Nemours Children's Clinic, Jacksonville, and 2 Division of Behavioral Pediatrics, Nemours Children's Clinic, Orlando, Florida
All correspondence should be sent to Tim Wysocki, Ph.D., Division of Psychology and Psychiatry, Nemours Children's Clinic, 807 Children's Way, Jacksonville, Florida 32207. E-mail: twysocki{at}nemours.org.
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Objective Despite theoretical and empirical reasons suggesting its potential importance, paternal involvement in the management of pediatric chronic diseases has rarely been a primary focus of research on family adaptation to pediatric disease. This may be due to a lack of appropriate tools to measure relevant behaviors. This study assessed the reliability and validity of the Dads' Active Disease Support scale (DADS), which was designed to measure male and female caregivers' estimates of the amount and helpfulness of paternal involvement in managing six pediatric chronic diseases. Method A sample of 224 heterosexual couples completed the DADS and measures of mother, child, and family functioning, yielding 190 who completed data sets. Of these, 91 mothers and 88 fathers completed the DADS again after a 1-month interval. Results Results confirmed DADS internal consistency, test-retest reliability, and interparent agreement. Confirmatory factor analysis supported its construct validity: A two-factor model (amount and helpfulness of fathers' involvement) best accounted for participants' responses. Significant correlations with scores on the Family Assessment Device supported DADS convergent validity. DADS scores of mothers and fathers suggest substantial room for improvement in both the amount and the helpfulness of paternal involvement in disease management. Mothers provided significantly higher ratings of the helpfulness of fathers' involvement than did fathers. Conclusions The DADS appears to be a reliable and valid measure for studies of the associations between paternal involvement in disease management and child, maternal, and family adaptation to pediatric chronic medical conditions.
Key words: fathers; involvement; pediatric chronic disease; coping.
Historically, studies of the impact of childhood chronic illness on the family have tended to focus on mothers. Mothers have been found to bear the brunt of illness management, both practically (e.g., Anderson, Auslander, Jung, Miller, & Santiago, 1990
; Etzwiler, 1962; Quittner, Opipari, Regoli, Jacobsen, & Eigen, 1992) and emotionally (e.g., Goldbeck, 2001; Kovacs et al., 1990; Timko, Stovel, & Moos, 1992). In the past decade, however, investigators have begun to emphasize the need to explore the father's role and include his perspective when studying families with a chronically ill child (Drotar, 1997; Quittner et al., 1992; Seiffge-Krenke, 2002). Several studies show that youths with chronic diseases from father-absent families may demonstrate poorer treatment adherence, psychological adjustment, and health status compared with those from father-present families (Hanson, Henggeler, Rodrigue, Burghen, & Murphy, 1988; Harris, Greco, Wysocki, Elder-Danda, & White, 1999). Other studies demonstrate that measures obtained separately from mothers and fathers may have different associations with medical and psychosocial outcomes of children with chronic medical conditions (e.g., Goldbeck, 2001; Schobinger, Florin, Zimmer, Lindemann, & Winter, 1992; Timko, Stovel, Moos, & Miller, 1992; Wysocki, 1993), underscoring the importance of obtaining multiple perspectives.
Although there has been an increase in research on the role of fathers in child development (Booth & Crouter, 2001; Lamb, 1997), the contributions of fathers to pediatric chronic disease management have received little attention. While studies have demonstrated that mothers assume the majority of disease management responsibility (e.g., Quittner, Di Girolamo, Michel, & Eigen, 1992), there is likely considerable variability among families in terms of the extent to which fathers offer instrumental and emotional forms of support. To the extent that paternal involvement influences family coping with children's chronic medical conditions (Wallander, Varnia, Babani, Banis, & Wilcox, 1989), it may prove to be an important target for clinical interventions designed to promote family adaptation to these challenges.
The absence of such research may be due to several factors, such as the lack of pertinent, well-validated measures of paternal involvement in disease management and the perception that it is difficult to engage fathers in family research (Costigan & Cox, 2001). The present paper describes a new measure of the amount and helpfulness of fathers' contributions to family adaptation to such conditions, called the Dads' Active Disease Support scale (DADS). Based broadly on social support literature focusing on supportive actions and social cognitions about that support (Cohen, Underwood, & Gottlieb, 2000), the measure assesses the amount of support offered by the father, as well as perceptions of the quality of that support.
In this report, we describe the DADS and present data on its reliability and validity obtained from a sample of 224 couples raising children with one of six chronic diseases. The diseases were selected for study because they are relatively common, they are each managed with a complex medical regimen, and their effective management has been shown in research to be dependent on important contributions of family functioning. In addition, we present descriptive data on the degree of paternal involvement and analyze its associations with various demographic factors.
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Method |
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Research Design and Participants
We utilized a cross-sectional design to address the research objectives outlined above. Data collection occurred at a single point in time for each family, except that some participants repeated the DADS after 1 month so that test-retest reliability could be assessed.
Participants were adult heterosexual couples who were the caregivers of, and living with, a child between the ages of 2 and 18 years diagnosed with one of six chronic medical conditions: asthma (at least mild persistent in severity), cystic fibrosis, type 1 diabetes mellitus, phenylketonuria (PKU), inflammatory bowel disease, or spina bifida. This included stepparents and adoptive parents as well as couples who had lived together for at least 6 months but were not married. Only those adult caregivers living with the identified patient were enrolled. Inclusion criteria required that each child be in treatment with a regimen requiring daily administration of prescribed medication(s) or dietary products, regular clinic appointments, and symptom monitoring. The patient's physician must have expected the patient to be on this regimen for at least 6 months. Beginning with a sample of 374 potentially eligible families, 224 couples (mothers or other female caregivers and fathers or other male caregivers) participated in the study, with complete data sets obtained from 190 of the couples. Within this sample, 168 fathers (88%) and 180 mothers (95%) were biological parents of the index child. Nonbiological caregivers, who are also referred to as mothers and fathers in this paper, must have resided with the chronically ill child for at least 6 months in order to participate. Intact families had significantly higher socioeconomic status (SES) than families with one biological and one nonbiological adult caregiver, but there were no other significant demographic differences. Each participant signed an institutionally approved informed consent form before beginning the research procedures. Table I summarizes the demographic characteristics of the sample. Compared with 241 two-parent families who participated in prior similar studies completed by the first author at this center, the enrolled sample did not differ significantly in terms of SES or any of the other demographic characteristics listed in Table I.
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Measures
Dads' Active Disease Support Scale
The DADS is a 24-item Likert-type scale with separate forms for mothers and fathers. The measure was constructed by cataloging emotional and instrumental support tasks relevant to illness management. We next reviewed a preliminary item pool with physicians and nurses who managed the selected medical conditions. Items were then refined and reduced based on these experts' feedback.
Items were constructed to elicit both mothers' and fathers' assessments of the amount of the father's involvement in a given disease management task. This was followed by an evaluation of whether performance of the support task made illness management easier or harder, which we define as helpfulness.
The form for mothers on the DADS seeks their ratings of their male partner's involvement in specific illness management tasks, while the fathers' form seeks the man's rating of his own involvement in the same tasks. Instructions were worded as follows: "This scale measures how much the child's father (you) is (are) involved in tasks related to your child's medical condition and how his (your) involvement affects your family's coping with the illness and its treatment. After reading each item, think about how many times that task was needed in the past 6 months. Then, rate how much he has (you have) done that behavior when it was needed and how his (your) level of involvement has affected your family. Put a check mark next to the answer that best matches your view of each statement. Please answer every question. If there was absolutely no need for the task described in an item within the past 6 months, check the space that indicates this and go on to the next question."
Amount ratings pertaining to a particular task were preceded by the question "When it was needed, how much has he (have you) done this in the past 6 months?" Point values for the various response options were 1 = 0%; 2 = 25%; 3 = 50%; 4 = 75%, and 5 = 100%. Helpfulness ratings were preceded by the question "Has this made family coping with the disease harder or easier?" Point values for the various response options were 1 = harder, 2 = neither harder nor easier, 3 = slightly easier, 4 = easier, and 5 = much easier. Caregivers' responses yielded separate scores for amount and for helpfulness of father involvement. For 17.4% of DADS ratings, caregivers reported that the task of interest had not been needed in the prior 6 months. In such instances, participants were given a prorated amount score consisting of the mean score for all completed amount ratings multiplied by 24. A score of 2 (neither harder nor easier) was entered for all helpfulness ratings when the caregiver reported that the task in question had not been needed in the prior 6 months. One month after their initial participation, all participants were mailed a second copy of the DADS to complete and return by mail.
Each caregiver completed a questionnaire that captured the following demographic information: caregiver's age, education, occupation, race/ethnicity, and marital status; family composition; child's age, sex, race/ethnicity, type and date of diagnosis of chronic disease, and health care utilization (hospitalizations, emergency room visits) in the prior 6 months. The Hollingshead (1975) four-factor index of SES was calculated based on caregivers' reports of their education and occupation. Additional information was obtained regarding characteristics of each caregiver's occupational situation, including degree of control over work schedule, average number of hours worked per week, and average number of nights per month spent away from home for work-related purposes.
To permit evaluation of the convergent validity of the DADS, mothers and fathers completed the Family Assessment Device (FAD) (Kabacoff, Miller, Bishop, Epstein & Keitner, 1990). Correlations between mothers' and fathers' scores on the DADS and the FAD general functioning scale were calculated for these analyses. Based on data from the present sample, this FAD scale had internal consistency of.83 for mothers and.82 for fathers.
Additional measures obtained but not analyzed for this paper included disease-specific indices of medical treatment adherence and children's health status, as well as the following scales: Pediatric Quality of Life Inventory (Varni, Seid, & Rode, 1999), Impact on Family Scale (Stein & Reissman, 1980), Parenting Stress Index brief form (Abidin, 1983), Brief Symptom Inventory (Derogatis, 1983), and the Dyadic Adjustment Scale (Spanier, 1976). Associations between these measures and DADS scores are the subjects of separate reports.
Procedures
Potential participants were identified via clinic schedules at Nemours Children's Clinics in Jacksonville and Orlando, Florida. Parents of children scheduled for clinic visits for one of the targeted diagnoses within the coming 6 months were mailed a study description that delineated the eligibility requirements and instructions for contacting the project coordinator. In the case of PKU, the small available sample of families at the two sites led the investigators to advertise the study on a PKU-related Internet website. With either recruitment method, after verifying the family's eligibility, the project coordinator scheduled the family for study participation. Couples completed study participation in person, by mail, or by telephone interview (adherence interview only). The percentage of participants using each of these mechanisms was 15.2% for both parents in clinic (n = 29), 27.0% for one parent in clinic and the other by mail (n = 51), and 57.9% for both parents by mail (n = 111). Participation through these various means was utilized to increase convenience and thus increase the probability of father involvement. After family members read and signed the informed consent form, the instructions asked them to independently and confidentially complete the measures required of each. Each couple was paid $50 after the required measures were completed and returned. The project coordinator reviewed the returned questionnaires carefully to ensure that every item was completed and any administration errors were corrected before the data were entered.
All data entry and statistical analyses were completed using SPSS 10.5 for Windows. All questionnaires were formatted to enable machine scoring using an Opscan 4 optical scanner (NCS-Pearson, Inc.), enabling direct export of data to an SPSS data file. Distributions of all study variables were checked for normality, and no data transformations were necessary to achieve normal distributions.
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Results |
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Sample Characteristics
Table I summarizes the demographic characteristics of the enrolled sample. Overall, the participants appeared to be broadly representative in terms of the child's medical diagnosis, age, and gender and of the parents' age, education, and employment. Among the 190 participating couples, the distribution of Hollingshead (1975)
SES categories was: low, 3 (1.6%); lower middle, 13 (6.9%); middle, 49 (25.8%); upper middle, 79 (41.6%), and upper, 46 (24.1%). The mean Hollingshead index raw score of 45.3 indicates that the average couple was from the middle socioeconomic class, which does not differ significantly from that of 241 two-parent families that participated recently in similar research at this institution (mean = 44.7). The 91 mothers and 88 fathers who completed retest administrations of the DADS after 1 month did not differ significantly from the rest of the sample on any demographic dimension or in terms of DADS scores obtained in the first administration. The mechanism of questionnaire completion and data collection (mail or in clinic) did not significantly affect either mothers' or fathers' scores on the DADS.
Reliability of the Dads' Active Disease Support Scale
Table II shows that the DADS scores for amount, helpfulness, and total each possess sound internal consistency based on data obtained from the mothers and fathers in the present study. Coefficients of Cronbach's 
exceeded.92 for all of these scores for both mothers and fathers. Test-retest reliability over 1 month was.78 for amount,.84 for helpfulness, and.86 for the total score for the 91 mothers; and.80 for amount,.75 for helpfulness, and.82 for the total score for the 88 fathers. Pearson r correlation coefficients between mothers' and fathers' DADS scores were.35 for amount,.27 for helpfulness, and.33 total, p <.0001 for all associations.
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Validity of the Scale
Construct validity of the DADS was evaluated using confirmatory factor analysis, while convergent validity was evaluated using correlations between the DADS and the FAD (Kabacoff et al., 1990
).
Confirmatory factor analysis was completed to test the hypothesis that the DADS measures two factors: amount of paternal involvement, comprising the 24 amount ratings; and helpfulness of paternal involvement, comprising the 24 helpfulness ratings. Using the SAS PROC CALIS procedure (SAS Institute, 2002), the null hypothesis of no difference between the standardized residuals and zero could not be rejected (
2 = 1.38 for mothers and 1.13 for fathers; p = ns). Thus, the two-factor model accurately represented the measurement structure of the data.
The incremental fit of this two-factor measurement model was then contrasted with a null model which specified no common factors (i.e., that item covariances could be explained solely by measurement error). The obtained comparative fit index of.92 for both mothers and fathers (Bentler, 1990) indicated that the two-factor model was superior to the null model in specifying the instrument's factor structure.
An initial principal components analysis of mothers' DADS responses yielded a three-factor model, with factors that could be labeled amount of emotional support (eigenvalue, 20.3), amount of instrumental support (eigenvalue, 4.5), and helpfulness of support (eigenvalue, 3.1). Fathers' DADS responses also yielded a three-factor solution, with helpfulness (eigenvalue, 16.7), instrumental support (eigenvalue, 4.9), and amount of support (eigenvalue, 3.8). Repetition of the above confirmatory factor analysis contrasting the two-factor model with these three-factor models yielded a comparative fit index (Bentler, 1990) of.94 for mothers and.91 for fathers, indicating that the two-factor model was superior to the three-factor models derived from principal components analysis in describing the factor structure of the DADS responses of both mothers and fathers.
Convergent validity of the DADS was evaluated by calculation of Pearson correlation coefficients between mothers' and fathers' scores on the DADS and their scores on the FAD general functioning subscale (Kabacoff et al., 1990). These analyses revealed statistically significant correlations between mothers' DADS scores for amount (r = –.31; p <.0001), helpfulness (r = –.38; p <.0001), and total (r = –.37; p <.0001) and their FAD general functioning scores. For fathers, the corresponding correlation coefficients between DADS and FAD general functioning scores were somewhat weaker but still statistically significant: amount, r = –.24, p <.002; helpfulness, r = –.19, p <.02; and total, r = –.22, p <.004. Overall, these analyses confirm the convergent validity of the DADS.
Descriptive Data on Scores
Means, standard deviations, and ranges for the DADS scores for amount, helpfulness, and total appear in Table II. DADS amount scores did not differ significantly between mothers and fathers (64.9 and 66.6, respectively). The mean item score of 2.7 for mothers and fathers indicates that on average, fathers performed disease management tasks in 25% to 50% of the opportunities during the prior 6 months. DADS helpfulness scores, in contrast, were significantly higher (paired-sample t = 3.60, p <.0001) as reported by mothers (M = 75.6) than fathers (M = 70.6). Mothers rated fathers' contributions to disease management as more helpful than did the fathers. The mean helpfulness rating of 3.0 indicates that on average, fathers' involvement in disease management made family coping with the disease slightly easier. Neither mothers' nor fathers' DADS scores differed significantly between intact and nonintact families.
Table III summarizes the mean scores for mothers and fathers for the individual DADS ratings for amount and helpfulness. These data indicate that no rating for amount attained a mean score higher than 3.7 and that most mean ratings were in ranges indicating that paternal involvement in disease management was occurring at no more than half the possible frequency. Similarly, the highest mean score for any helpfulness rating was 3.9, and most mean ratings (20 for mothers, 24 for fathers) were in a range (2.5–3.5) suggesting that paternal involvement made family coping with the disease slightly easier.
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Demographic Correlates of Scores
Finally, the analysis plan included evaluation of the associations of several continuous and categorical demographic variables with DADS amount, helpfulness, and total scores obtained by mothers and fathers. The continuous demographic variables that were examined were the child's age; the caregivers' ages, educational level, and employment characteristics; and the family's SES. For DADS total scores, no demographic factors were related to mothers' scores. Fathers who obtained higher DADS total scores tended to be of lower SES (r = –.20, p <.007). Mothers' data indicated that higher DADS amount scores were significantly associated only with younger ages of the child, mother, and father (r = –.16 for all, p <.037). Fathers who reported higher DADS amount scores also tended to have younger children (r = –.18, p <.02), to be younger themselves (r = –.21, p <.004), to be of lower SES (r = –.23, p <.002), and to work fewer hours per week (r = –.15, p <.05). Neither mothers' nor fathers' scores on the DADS helpfulness items were correlated significantly with any of these demographic factors.
Categorical demographic variables evaluated as predictors of DADS scores included children's gender, race (white vs. nonwhite), and medical diagnosis. No DADS scores of mothers or fathers differed as a function of the child's gender. Lower DADS scores were obtained for white children than nonwhite children for mothers on DADS amount (F = 7.43, p <.007) and total (F = 7.08, p <.008) and fathers on DADS amount (F = 9.76, p <.002) and total (F = 4.74, p <.031).
One-way analysis of variance showed that DADS scores also differed according to the child's medical diagnosis, although these differences varied somewhat between mothers and fathers. Families of children with PKU and spina bifida tended to obtain higher DADS amount and total scores compared with other diagnostic groups. There were no statistically significant differences among diagnostic groups in terms of DADS helpfulness scores. Since the diagnostic groups also differed somewhat in SES, this analysis was repeated with SES included as a covariate. The statistically significant differences shown in Table IV all became nonsignificant when this was done.
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Most studies of family processes have long relied on maternal report, limiting the depth of our understanding in this field. Drotar (1997)
emphasized the need for family-level data and the measurement of specific behaviors that relate to illness management within the family context. He argued that researchers should use multiple family informants rather than relying on the mother as the sole reporter, and that we must move away from simply measuring general family functioning toward measuring how families manage illness-specific tasks. In the current study, we attempted to address these issues by developing a measure of the role of fathers in pediatric disease management. To our knowledge, until now there has been no measure available to quantify either the amount or the helpfulness of paternal involvement in the management of pediatric chronic diseases. We suggest that the current data provide support for this new tool. The current results suggest that the DADS scale possesses acceptable internal consistency, test-retest reliability, interparent agreement, construct validity, and convergent validity to support its further use in research on family adaptation to chronic medical conditions occurring in children and adolescents.
Cronbach's coefficient exceeded.92 for the DADS scores for amount, helpfulness, and total for both mothers and fathers. Test-retest reliability over a 1-month interval ranged from.75 (fathers' DADS amount) to.91 (mothers DADS total) for the 91 mothers and 88 fathers who completed the DADS on both occasions. Agreement between the parents was.35 for amount,.27 for helpfulness, and.33 for the total score. These latter correlations, although statistically significant, are somewhat modest, suggesting that many couples may not communicate effectively about their individual perspectives of paternal involvement in disease management. In particular, the significantly higher DADS helpfulness scores for mothers suggest that fathers underestimate or underappreciate the degree to which their contributions to disease management may be perceived as helpful and important by their spouses. Alternatively, this finding may be a reflection of a social desirability response set inducing mothers to overreport and fathers to underreport the perceived levels of paternal helpfulness.
Descriptive analyses showed that on average, fathers were rated as performing disease management tasks on fewer than half of the available opportunities. DADS amount scores did not differ significantly between mothers and fathers, suggesting that both categories of participants perceived fathers to be somewhat underinvolved in disease management. Thus, in this sample, there was considerable room for increased paternal involvement. Despite this, overall ratings of fathers' helpfulness were slightly more positive, especially with respect to DADS helpfulness scores of mothers. This suggests that increased active involvement of fathers in chronic disease management could be matched by corresponding increases in mothers' perceived helpfulness of that support. Further study of the relation between DADS scores and family and maternal functioning will be pursued to understand the effect of paternal involvement on the family system.
If subsequent research shows that either the amount or helpfulness of paternal involvement in disease management is an appropriate target for psychological interventions, the DADS could function as an acceptable measure of treatment effects in intervention studies. Further, clinicians could use the measure to elucidate ways in which a father provides helpful contributions and in which his helpfulness could be improved.
In addition to the above descriptive analyses, various analyses were performed to clarify the associations between demographic variables and DADS scores. Among continuous demographic variables, only the ages of the child, mother, and father emerged as significant correlates of mothers' DADS amount scores. DADS total scores tended to be higher among fathers who were younger and of lower SES. Fathers who reported higher DADS amount scores also tended to have younger children, to be younger themselves, to be less educated, to be of lower SES, and to work fewer hours per week. Neither mothers' nor fathers' scores on the DADS helpfulness items were correlated significantly with any of these demographic factors.
Among categorical demographic variables, families of white children had significantly lower DADS scores than did families of nonwhite children. There were some statistically significant differences among medical diagnostic groups in both mothers' and fathers' DADS scores. Families of children with spina bifida and PKU tended to score somewhat higher on DADS amount and total scores compared with families coping with other medical conditions. These differences disappeared when SES was entered as a covariate in this analysis. Also, these results differed for mothers and fathers, and the relatively small samples within each disease group suggest that conservative interpretation of these findings is warranted.
The primary limitation of this study was that the data were obtained from a convenience sample, and it is unknown to what extent the participants are representative of all two-parent families of children with the targeted chronic diseases. Costigan and Cox (2001) have previously reported that recruitment procedures such as those used in this study may underrepresent fathers with less education, less optimal parenting styles, and more traditional child-rearing beliefs who are members of ethnic minorities and of the working class. Although the present sample represented a broad spectrum of SESs and racial/ethnic groups, the extent to which the sample is representative of the target population is unknown.
The data presented in this paper confirm the adequacy of several psychometric properties of the DADS as a measure of caregivers' perceptions of the amount and helpfulness of fathers' direct and indirect involvement in, and support of, their child's medical care. The availability of such a measure opens a range of research opportunities into the correlates, predictors, and consequences of paternal involvement in the management of pediatric chronic diseases.
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Acknowledgements |
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This study was supported by research grant #8877 from the Nemours Foundation to both authors. The authors would like to acknowledge the contributions of Tracy Rohm, MA, and Doreen McHugh, MSW, for their efforts in the recruitment of participants and data collection.
Received July 25, 2002; revision received April 8, 2003; revision received June 19, 2003; accepted June 23, 2003
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D. A. Ellis, J. Yopp, T. Templin, S. Naar-King, M. A. Frey, P. B. Cunningham, A. Idalski, and L. N. Niec Family Mediators and Moderators of Treatment Outcomes Among Youths with Poorly Controlled Type 1 Diabetes: Results From a Randomized Controlled Trial J. Pediatr. Psychol., March 1, 2007; 32(2): 194 - 205. [Abstract] [Full Text] [PDF]
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T. Wysocki and L. Gavin Paternal Involvement in the Management of Pediatric Chronic Diseases: Associations with Adherence, Quality of Life, and Health Status J. Pediatr. Psychol., June 1, 2006; 31(5): 501 - 511. [Abstract] [Full Text] [PDF]
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L. Gavin and T. Wysocki Associations of Paternal Involvement in Disease Management with Maternal and Family Outcomes in Families with Children with Chronic Illness J. Pediatr. Psychol., June 1, 2006; 31(5): 481 - 489. [Abstract] [Full Text] [PDF]
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D. Drotar Commentary: Involving Families in Psychological Interventions in Pediatric Psychology: Critical Needs and Dilemmas J. Pediatr. Psychol., December 1, 2005; 30(8): 689 - 693. [Full Text] [PDF]
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