Abstract

Objective To critically review, analyze, and synthesize the literature on parenting stress among caregivers of children with asthma, cancer, cystic fibrosis, diabetes, epilepsy, juvenile rheumatoid arthritis, and/or sickle cell disease. Method PsychInfo, MEDLINE, and Cumulative Index to Nursing and Allied Health Literature were searched according to inclusion criteria. Meta-analysis of 13 studies and qualitative analysis of 96 studies was conducted. Results Caregivers of children with chronic illness reported significantly greater general parenting stress than caregivers of healthy children (d = .40; p = ≤.0001). Qualitative analysis revealed that greater general parenting stress was associated with greater parental responsibility for treatment management and was unrelated to illness duration and severity across illness populations. Greater parenting stress was associated with poorer psychological adjustment in caregivers and children with chronic illness. Conclusion Parenting stress is an important target for future intervention. General and illness-specific measures of parenting stress should be used in future studies.

Chronic health conditions among children are on the rise. Recent estimates approximate that 7–18% of U.S. children have a chronic health condition (National Health CareStatistics, 2006; Perrin, Bloom, & Gortmaker, 2007; Van Cleave, Gortmaker, & Perrin, 2010). In addition to its impact on the child, childhood chronic illness often impacts the entire family system (Kazak, 1989). Parents must face the devastating news of their child’s diagnosis, the associated medical risks, and in some instances, their child’s potential for a shortened life expectancy. Although some families may demonstrate resiliency in the face of such stressors, the demanding treatment regimens and shifts in roles, responsibilities, and resources may negatively impact family functioning.

Parenting stress, or stress directly related to the role of parent, is important to understanding family dysfunction and psychopathology (Abidin, 1995). Parenting stress can have a variety of effects on parents and their children. A number of studies have documented associations between parenting stress and adverse caregiver and child psychological sequelae. For instance, parenting stress was shown to moderate the relationship between perceived vulnerability and depressive symptoms in youth with diabetes (Mullins et al., 2004). Parenting stress may also affect child health-related outcomes as it could potentially interfere with the management of a child’s chronic condition (Streisand, Braniecki, Tercyak, & Kazak, 2001). For example, Barakat et al. (2007a) found that greater disease-related parenting stress at baseline in caregivers of children with sickle cell disease was associated with greater disease severity and more frequent health care utilization 1 year later. Given its significance, a number of investigators have examined parenting stress; however, this important literature is not well integrated. A comprehensive, cross-illness systematic review has yet to be conducted. An analysis of this nature increases understanding of parenting stress, highlights gaps in the literature and future directions for research, and may inform the development of evidence-based interventions for reducing parenting stress that can be used across pediatric chronic illness populations.

Guided in part by Lazurus and Folkman’s (1984) stress and coping model, the Transactional, Stress and Coping Model suggests that illness parameters and parent/child adaptational processes, such as illness-related stress appraisals and methods of coping, influence parent/child adjustment to chronic illness (Thompson, Gil, Burbach, Keith, & Kinney, 1993a; Thompson, Gustafson, Hamlett, & Spock, 1992; Thompson & Gustafson, 1996). This model has been used in previous studies of parenting stress in caregivers of children with pediatric conditions (e.g., Colletti et al., 2008; Mullins et al., 2007; Streisand et al., 2001). The Cochrane Collaboration (Higgins & Green, 2011) recommends that predetermined review questions should be developed and used when conducting a systematic review. Thus, guided in part by this theoretical framework, a review of the literature regarding parenting stress among caregivers of children with chronic illness was conducted. Specifically, questions 3–6 were guided by this theory. The review sought to answer the following questions: (i) What measures are used to assess parenting stress in parents of children with chronic illness? (ii) Do reports of parenting stress differ among groups of parents (e.g., parents of children with various chronic conditions, parents of healthy children)? (iii) Do characteristics of the causal agent (i.e., illness parameters) significantly contribute to parenting stress? (iv) Do parental illness-related cognitive appraisals relate to parenting stress outcomes? (v) Do parent coping mechanisms and resources relate to parenting stress outcomes? (vi) Does parenting stress relate to parent and child psychological adjustment and health-related outcomes?

Methods

Search Strategy

The following databases were searched: PsychInfo, MEDLINE, and Cumulative Index to Nursing and Allied Health Literature (excluding MEDLINE results). The search was limited to articles published in a peer-reviewed journal from January 1980 to June 2012 to allow for the inclusion of as many studies as possible, while also limiting the review to studies relevant to current medical practice. Predetermined search terms were used to identify articles meeting the inclusion criteria. The first stem group included “parent$$ stress,” “maternal stress,” “paternal stress,” “family stress,” and “caregiv$$ stress.” The second stem group included “child$$,” “youth,” “adolescen$$,” “teen$$,” “pediatric,” and “paediatric.” Terms used in the final stem group included “asthma,” “cancer,” “cystic fibrosis,” “diabetes,” “epilepsy,” “juvenile rheumatoid arthritis,” and “sickle cell disease.” The reference sections of articles meeting inclusion criteria were also searched.

Inclusion Criteria

Systematic Review. In accordance with recommendations provided by the Cochrane Collaboration for conducting a systematic review, a protocol was developed and explicitly stated objectives and inclusion criteria were defined (Higgins & Green, 2011). Inclusion criteria for the systematic review was as follows: (i) publication date between January 1980 and June 2012, (ii) publication in a peer-reviewed journal, (iii) written in the English language, (iv) study population included pediatric (0–21 years) asthma, cancer, cystic fibrosis, diabetes, epilepsy, juvenile rheumatoid arthritis, and/or sickle cell disease population, and (v) study included a quantitative measure of general and/or disease-related parenting/caregiving stress. Measures of stress not specific to parenting/caregiving stress were not included. Measures of parental psychological symptoms (e.g., anxiety, depression) were not included.

Quantitative Review (Meta-Analysis). Meta-analysis was considered for questions 2–6. It was determined that there were a sufficient number of studies comparing parenting stress for caregivers of children with chronic illness to caregivers of healthy controls to allow for meta-analysis for question 2. Of those meeting the general review inclusion criteria, studies that (i) compared reports of general parenting stress between caregivers of children with chronic illness with the reports of caregivers of healthy controls, and (ii) reported statistical information that would allow for comparison were included in the meta-analysis for question 2. A total of 15 studies were indentified. Of these, all but one used a version of the Parenting Stress Index (PSI; Abidin, 1995) to measure general parenting stress, and therefore was excluded. Another study was excluded due to a lack of data reported needed to calculate an effect size. A total of 13 studies were included in the meta-analysis. Owing to the small number of studies examining similar constructs (e.g., adherence, depression) for questions 3–6 (i.e., less than eight studies for each construct), meta-analysis could not be used for these questions.

Statistical Approach

Both qualitative and quantitative analyses were used to more fully draw conclusions from the literature. For the predetermined questions that could not be answered using meta-analytic procedures due to a small number of conceptually comparable studies (i.e., questions 3–6), qualitative analyses were conducted using guidelines outlined by the Cochrane Collaboration (Higgins & Green, 2011).

To determine whether or not reports of general parenting stress differ among caregivers of children with chronic illness vs., caregivers of healthy children (i.e., controls), meta-analytic procedures were used. A coding protocol was developed, and from the studies that compared reports of general parenting stress between both groups of caregivers the following data were extracted by the first author: Chronic illness group type, sample size, age, group matching approaches, exclusion criteria, study type, and data needed to compute effect sizes (e.g., mean scores and standard deviations on parenting stress measures, F statistics). The second author conducted a reliability check to ensure accuracy of data extracted. Attempts were made to contact study authors for additional data as needed.

Cohen’s d was computed for all effect sizes (Cohen, 1988). One standardized mean difference effect size was calculated from each of the remaining 13 studies according to guidelines provided by Lipsey and Wilson (2001) for conducting group contrasts research. When more than one measure of parenting stress was reported by a single study (e.g., mother and father report), means were averaged. Owing to small sample sizes, effect sizes were weighted by study sample to reduce bias (Hedges & Olkin, 1985). Meta-analyses were performed using the Statistical Software Package for the Social Sciences (SPSS, v. 20.0) via use of the mean effect size macro developed by Wilson (2006).

Cochran’s Q test was used to assess for homogeneity of effect sizes across the studies. The random effects model was used as this method takes into account subject- and study-level sampling error (Lipsey & Wilson, 2001). Cohen’s d was interpreted based on the following recommended values: .20 = small, .50 = medium, and .80 = large (Cohen, 1988). Confidence intervals (CIs) were used for interpretation.

Results

Study Characteristics

The Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA; Moher, Liberati, Tetzlaff, & Altman, 2009) guidelines were followed for the review. Search results yielded 475 articles, excluding duplicates (n = 82). All articles were reviewed, and 96 articles were indentified that met the inclusion criteria. The majority of articles excluded did not include a measure of general and/or disease-related parenting/caregiving stress (n = 238) or did not include a pediatric sample of children with asthma, cancer, cystic fibrosis, diabetes, epilepsy, juvenile rheumatoid arthritis, or sickle cell disease (n = 141). The 96 studies meeting inclusion criteria were reviewed, and data related to the predetermined questions were extracted (see Table I). Of the studies included, participants from a number of countries were represented: The United States (n = 74), Canada (n = 7), Taiwan (n = 6), the Netherlands (n = 2), Brazil (n = 1), Egypt (n = 1), England (n = 1), Iceland (n = 1), Ireland (n = 1), Germany (n = 1), Nigeria (n = 1), and Scotland (n = 1). Parenting stress was most frequently examined in caregivers of children with diabetes (n = 31), asthma (n = 21), cancer (n = 20), and cystic fibrosis (n = 18). Studies assessing parenting stress in caregivers of children with epilepsy (n = 12), sickle cell disease (n = 10), and juvenile rheumatoid arthritis (n = 3) were also identified. Fifteen studies included healthy controls as a comparison group (e.g., Baroni, Anderson, & Mischler, 1997; Modi, 2009).

Table I.

Summary of Included Studies

Study Comparison Group(s) Agea (NPS Measure Results (Effect Size)b 
Arthritis 
    Anthony et al., 2011  8–16 (51) Hassles and Uplifts Scale Greater PS predicted child depressive symptoms and pain intensity. PS was unrelated to child anxiety symptoms. 
    Iwamoto et al., 2008  NR (40) Caregiver Burden Scale PS was unrelated to parent education level, duration of juvenile arthritis, and parental employment. Mothers reported greater PS than fathers. 
    Manuel, 2001  5–16 (92) 4-item rating scale Greater disease-related PS correlated with greater daily hassles, greater family conflict, and greater parental psychological distress. Child illness severity and functional status were unrelated to disease-related PS. More positive appraisal of the child’s illness situation was associated with decreased parental psychological distress, even when PS was high. 
Asthma 
    cCaffrey-Craig, 2005 Healthy controls 10–12 (110) PSI No differences in PS were observed. PS was unrelated to peak flow variability (ES = .42). 
    Carson & Schauer, 1992  8–13 (41) PSI PS was greater for mothers of children with asthma when compared to norms. 
    Celano et al., 2011  8–13 (43) PSI/SF Less PS was associated with better illness management/adherence. 
    Celano, Holsey, & Kobrynski, 2012  8–13 (43) PSI/SF PS declined for caregivers in both the home-based family intervention group and for caregivers in the enhanced treatment as usual group. 
    DeMore et al., 2005 6–12 (45) PSI/SF Greater PS correlated with greater medication adherence. 
    Fagnano et al., 2009  4–10 (194) PSI (5 items) Parents of children with asthma and sleep-disordered breathing reported greater PS than parents of children with asthma only. 
    cGupta, 2007 ADHD; DD; HIV; Healthy controls NR (146) PSI Parents of children with ADHD or DD reported greater total PS than parents of children with asthma or HIV (ES = .52). 
    Joseph et al., 2003  2–18 (26) PSI/SF Greater PS correlated with poorer mite control adherence. 
    Lee et al., 2006  6–12 (37) Care of My Child with Asthma Scale European American caregivers reported that providing emotional support to child was the most time-consuming demand. African American caregivers reported that balancing demands outside the home and managing asthma treatments were most time-consuming. 
    cMarkson & Fiese, 2000 Healthy Controls 6–12 (86) PSI No group differences in PS were observed (ES = .12). 
    Svavarsdottir et al., 2000  0–6 (75) Care of My Child with Asthma Scale Providing emotional support to child was the most time-consuming caregiving task reported by mothers and fathers. Mothers reported that managing own fatigue while caring for their child, handling asthma episodes, and managing problematic child behaviors were the most difficult tasks. Fathers reported that handling asthma episodes, managing problematic child behaviors, and providing emotional support for spouse/partner were the most difficult tasks. 
    Svavarsdottir & Rayens, 2003  0–6 (179) Care of My Child with Asthma Scale No differences in PS were found between American and Icelandic parents. Disease-related PS was greatest for American and Icelandic mothers when compared to fathers. Greater disease-related PS was associated with negative parental perceptions about child’s health. 
    cWalker et al., 2007 Eczema; Healthy Controls 7–12 (232) PSI No group differences in PS were observed. Child psychosocial morbidity was unrelated to PS (ES = −.30). 
Cancer 
    Colletti et al, 2008  2–12 (62) PSI/SF Greater PS predicted poorer child behavioral, emotional, and social adjustment. 
    Fedele et al., 2011  2–10 (22) PSI/SF Greater PS at baseline predicted at baseline more child externalizing and internalizing problems 12–24 months later. 
    Fernandes, Muller, & Rodin, 2012  0–18 (65) PSS Greater PS correlated with more avoidant and anxious adult attachment and more parental depressive symptoms. Attachment styles predicted PS. 
    Hung, Wu & Yeh, 2004 CP; Spina Bifida 0–18 (181) PSI/SFc Parents of children with cancer reported the greatest PS. 
    Kazak & Barakat, 1997  NR (29) PSI/SF Greater PS correlated with greater parental state anxiety and greater paternal symptoms of PTSD. 
    Kazak et al., 1996  NR (236) PSI/SF Greater PS was correlated with procedural distress for fathers, but not for mothers. 
    Kronenberger et al., 1998  3–20 (24) CIPSQ Disease-related PS did not relate to parent psychological distress. 
    Litzelman et al., 2011  NR (75) Caregiver Reaction Assessment PS mediated the relationship between child cancer-related factors (e.g., activity limitations, active treatment status) and parental QOL. 
    Roddenberry & Renk, 2008  NR (63) PSI/SF Greater maternal PS correlated with poorer child QOL and more externalizing child behavior problems, but not to child depressive or anxiety symptoms. Greater paternal PS correlated with more externalizing child behavior problems and child depressive symptoms. 
    Shapiro, Perez, & Warden, 1998  2–16 (29) 4- item rating scale Greater PS correlated with less positive communication with spouse. PS was unrelated to the quality of the family’s relationship with the doctor. 
    Streisand et al., 2001  0–21 (126) PIP; PSI/SF Greater disease-related PS correlated with parental state anxiety and general PS. 
    Streisand et al., 2003  0–21 (116) PIP Greater disease-related PS was related to poorer family functioning. 
    Vrijmoet-Wiersma et al., 2010  0–18 (174) PIPc; PSI/SFc Mothers reported greater disease-related PS than fathers. Caregivers of young children, children on treatment, and children recently diagnosed reported greater disease-related PS. Disease-related PS correlated with greater caregiver anxiety symptoms and psychological distress. Disease-related PS correlated with general PS. 
    Wolfe-Christensen et al., 2010  2–12 (36) Care of My Child with Cancer Scale; PSI/SF Only general PS correlated with greater child externalizing and internalizing symptoms and fewer child prosocial behaviors. General PS moderated relationship between disease-related PS and child internalizing symptoms. Combination of low general PS and high disease-related PS was associated with fewer child internalizing symptoms. 
    Yeh, 2002  0–18 (328) PSI/SFc Mother and father reports of PS were similar. Mothers and fathers of children who were off-treatment reported the greatest PS. 
    Yeh, 2003  0–18 (441) PSI/SFc Coping style mediated the relationship between PS and parental psychological distress (e.g., somatization, anxiety, depression). Greater social support correlated with less PS. 
    Yeh, Chen, Li, & Chuang, 2001  0–18 (149) PSI/SFc; S-PSI/SF Results supported the validation of the simplified Chinese version of the PSI/SF. 
Cystic fibrosis 
    cBaroni et al., 1997 Healthy Controls 1–10 (98) PSI No group differences in total PS scores observed (ES = −.12). 
    cCrist et al., 1994 Healthy Controls 1–7 (44) PSI PS was greater for caregivers of children with CF (ES = .63). 
    Czyzewski et al., 1994  0–18 (199) PSI PS was unrelated to parent and youth report of quality of well-being. 
    cDarke & Goldberg,1994 CHD; Healthy Controls 0–2 (78) PSI Greater PS experienced by fathers correlated with less positive father–infant interactions. No group differences in father-reported PS. Mothers of children with illness reported greater PS (ES = .85). 
    Eddy et al., 1998  3–11 (41) PSI/SF Greater PS correlated with poorer compliance to physiotherapy and dietary regimen. 
    Goldberg et al., 1997 CHD; Healthy Controls 4 (137) PSI PS predicted child behavior problems (internalizing and externalizing) across all groups. 
    cGoldberg et al., 1990 CHD; Healthy Controls 0–1 (71) PSI Parents of children with illness reported the greatest PS. Parents of children with CF reported greater stress related to child demandingness than parents of children with CHD (ES = .68). 
    Quittner, DiGirolamo, Michel, & Eigen, 1992  NR (64) PSI; Parenting Routines Inventory – Stress Scale Compared with norms, PS was greater for parents of children with CF. Mothers reported greater stress related to caregiving than fathers. 
    Quittner et al., 1998 Healthy Controls 2–6 (66) FSS Mothers of children with CF reported greater PS than mothers of healthy children. Fathers of children with CF reported less PS than fathers of healthy children. 
    cSolomon & Breton, 1999 Healthy Controls 1–2 (49) PSI A greater percentage of parents of children with CF endorsed PS levels above the clinical cutoff. Parents of children with CF reported that their children were more demanding, contributing to increased PS (ES = .61). 
    Thompson et al., 1992  7–17 (68) 4-item rating scale Greater disease-related PS correlated with greater maternal psychological distress. 
    Tluczek et al., 2011 CF carriers; Congenital Hypothyroidism <6 mos. (136) PSI Greater PS was associated with greater perceived child vulnerability. 
Diabetes 
    Chisholm et al., 2007  2–8 (65) PSI/SF PS was unrelated to diabetes knowledge, injection frequency, injection time variability, number of blood glucose tests, and nonmilk extrinsic sugars intake. 
    Cunningham, Vesco, Dolan, & Hood, 2011  13–18 (147) PAID-P Perceived illness-specific PS mediated the relationship between caregiver depressive symptoms and youths’ glycemic control. Partial mediation was found for the relationship between caregiver anxiety symptoms and youths’ glycemic control. 
    Hansen et al., 2012  7–14 (125) PIP Mothers reported greater frequency of disease-related PS than fathers. Working mothers and fathers who were more involved in their child’s care reported greater disease-related PS. Greater disease-related PS correlated with greater sleep disturbances, greater symptoms of depression and anxiety, and poorer marital satisfaction in mothers and fathers. Greater paternal disease-related PS correlated with younger child age and higher A1c. 
    cHauenstein, Marvin, Snyder, & Clarke, 1989 Healthy Controls 0–11 (70) PSI Child age, sex, and A1c were unrelated to total PS. No group differences in total PS were observed between the parents of children with diabetes and parents of healthy children (ES = .51). 
    Helgeson et al., 2012  10–14 (132) Parental Stress Subscale PS predicted greater caregiver depressive symptoms and poorer life satisfaction. Greater PS was associated with greater child depressive symptoms, higher A1c, and less child self-care behaviors. Greater child self-care behaviors were associated with declines in PS. 
    Hilliard et al., 2010  2–6 (73) PIP Greater disease-related PS was associated with more child behavior problems. 
    Jeha et al., 2005  1–6 (10) PSI/SF No changes in PS levels were observed amongst caregivers of young children at three time points: pre-pump therapy, 3 months of pump therapy, 6 months of pump therapy. 
    Kaugars, Kichler, & Alemzadeh, 2011  12–17 (69) SIPA Parents of adolescents in the action/maintenance stage with regards to readiness to change the balance of treatment responsibility reported lower levels of PS. 
    Kirk et al., 2011 DSD NR (98) PSI/SF No group differences in PS were observed. 
    Lewin et al., 2005  8–19 (28) PIP Greater disease-related PS correlated with greater maternal state anxiety and more child internalizing/externalizing behaviors. 
    Mitchell et al., 2009  2–6 (43) PIP Greater disease-related paternal PS correlated with lower self-efficacy about diabetes management, greater fear of child hypoglycemia episodes, less hope, and greater child behavior problems. Duration of child’s diabetes was unrelated to disease-related paternal PS. 
    Monaghan et al., 2009  2–6 (71) PIP Parents who sometimes performed nocturnal blood glucose monitoring reported greater disease-related PS than parents who rarely/never did this nighttime task. 
    Monaghan et al., 2011  2–5 (24) PIP A telephone-based supportive intervention for parents of young children with diabetes decreased disease-related PS. 
    Muller-Godeffroy et al., 2009  4–16 (117) PIPc Parents reported a decline in disease-related PS after transitioning to pump therapy. 
    Mullins et al., 2004  8–12 (43) PSI/SF Greater PS correlated with greater perceived child vulnerability and more child depressive symptoms. PS was unrelated to physician rating of disease severity, duration of diabetes, family income, and maternal education level. Greater perceived child vulnerability as moderated by PS predicted child depressive symptoms. 
    Nabhan et al., 2009  0–5 (42) PSI No differences in PS were found between parents of children using insulin pump therapy and parents of children using insulin injection therapy. 
    Patton et al., 2011  2–7 (39) PIP Greater PS correlated with greater parental fears of hypoglycemia and more parental depressive symptoms. 
    cPowers et al., 2002 Healthy Controls 1–6 (80) PSI Parents of children with diabetes reported greater PS. Greater PS correlated with more mealtime child behavior problems (ES = .60). 
    Stallwood, 2005  0–9 (73) PAID; ADS Greater disease-related PS was associated with younger child age. Parental perception of disease-related PS was associated with better youth metabolic control. 
    Streisand et al., 2008  1–17 (102) PIP Disease-related PS was greater among younger parents, mothers, and families with lower incomes. Greater disease-related PS correlated with more symptoms of parental depression and anxiety. PS mediated relationship between parental gender and anxiety and depression. 
    Streisand, Mackey, & Herge, 2010  0–17 (278) 4-item rating scale Greater PS correlated with decreased parental psychological well-being. 
    Streisand et al., 2005  9–17 (134) PIP Greater disease-related PS correlated with younger child age, parent minority status, lower socioeconomic status, single-parent family structure, insulin injection treatment, and poorer youth metabolic control. Lower self-efficacy, greater responsibility for treatment regimen, and greater fears of hypoglycemia were associated with more frequent disease-related PS. Greater difficulty with disease-related PS was associated with greater responsibility for treatment regimen and greater fears of hypoglycemia. PS was unrelated to disease duration. 
    Wu et al., 2010  12–17 (62) SIPA PS did not differ amongst caregivers of teens on pump therapy and caregivers of teens using insulin injection therapy. Greater PS was correlated with older child age, but unrelated to child age at diagnosis, child gender, duration of diabetes, and family socioeconomic status. Greater PS was related to lower child QOL and poorer metabolic control. 
    Wysocki et al., 1989  2–6 (20) PSI PS was greater for parents of children with diabetes when compared to norms. Greater PS was correlated with more diabetes-related child behavior problems. 
Epilepsy 
    Camfield et al., 2001  2–16 (97) PSI PS was greatest for caregivers reporting high impact of epilepsy on the child/family. 
    Cushner-Weinstein et al., 2008  7–16 (65) PSI/SF Greater PS correlated with greater child depressive symptoms. Parents of children with epilepsy and learning disabilities reported higher PS than parents of children with epilepsy only. PS was unrelated to polytherapy, seizure frequency, seizure type, duration of the disorder, and age at onset. 
    Levin & Banks, 1991  1–19 (25) PSI Fathers of children with epilepsy reported greater PS than normative group. No differences for mothers. Greater PS correlated with parental unemployment, seizure type (not well-controlled), and greater number of child medications. PS was unrelated to parent sex, parent age, parent education, family income, frequency of seizures, and child’s age at diagnosis. 
    cMattie-Luksic, Javornisky, & DiMario, 2000 Breath Holders; Healthy Controls 1–8 (66) PSI Parents of children with epilepsy or severe breath-holding reported greater PS than parents of healthy children (ES = .88). 
    cModi, 2009 Healthy Controls 2–12 (59) PSI; Family Stress Scale – Seizure No group differences in PS were observed (ES = .51). 
    Pulsifer, Gordon, Brandt, Vining, & Freeman, 2001  1–16 (65) PSI/SF PS remain unchanged 1-year after initiating a ketogenic diet for difficult-to-control seizures. 
    Rodenburg et al., 2007  4–18 (91) PSIc; Parental Burden of Caregiving Scale Greater PS correlated with more behavioral problems due to child’s illness, more difficult child temperament, more symptoms of parental depression, less social support, lack of family cohesion, less marital satisfaction, lower levels of parent-child relationship quality, less supportive parenting, and lower levels of behavioral and psychological control. The use of more emotion-focused coping behaviors was related to greater PS. Child illness-related behavioral problems, child temperament, and parental depression contributed most significantly to predicting PS. PS mediated the relationships between familial risk/resilience factors and parenting dimensions. 
    Shatla et al., 2011  9–12 (23) PSIc Greater PS correlated with greater seizure severity and more child internalizing problems. Parents of children with intractable seizures reported greater PS than parents of children with controlled seizures. 
    Sheeran, Marvin, & Pianta, 1997b CP 1–4 (97) PSI/SF Greater PS correlated with maternal nonresolution of child’s diagnosis. 
    Wirrell et al., 2008  2–18 (52) PSI Compared to norms, PS was higher for parents of children with epilepsy. PS was unrelated to child internalizing symptoms, child adaptive behaviors, autism diagnosis, child age, disease-related characteristics (e.g., seizure frequency), family income, family structure, and parental education. Greater PS correlated with greater child externalizing symptoms and poorer overall child emotional/behavioral functioning. 
Sickle cell disease 
    Barakat et al., 2007b  3–5 or 12–18 (68) PIP Parents of adolescents reported greater PS related to disease-related communication than parents of preschoolers. Lower income and more pain episodes were associated with greater PS. Higher income and better family functioning predicted less PS. 
    Barakat et al., 2008  12–18 (42) PIP Greater disease-related PS was associated with more frequent youth pain episodes, greater symptoms of youth depression and anxiety, and poorer youth HRQOL. Disease-related PS mediated relationship between pain frequency and QOL. 
    Barakat et al., 2007  12–18 (41) PIP Greater disease-related PS at baseline was associated with greater disease severity/health care utilization one year later. 
    Hall et al., 2012 ASD; CP; Down Syndrome NR (25) PSI/SF No group differences in PS were observed. 
    Logan et al., 2002  12–18 (70) PIP Greater disease-related PS correlated with less family income, more stressful life events, greater disease severity, and more routine and urgent service uses. 
    Olley, Brieger, & Olley, 1997  0–21 (200) 30- item rating scale Monogamously married mothers reported less PS than non-married mothers or those in polygamous marriages. Younger and Christian mothers reported less PS. Mothers of older children and mothers of more than one children with SCD reported greater PS. 
    Tarazi, Grant, Ely, & Barakat, 2007  3–5 (26) PIP Greater difficulty of disease-related PS correlated with lower child motor/visuomotor scores. 
    Thompson et al., 1993  7–17 (78) 4-item rating scale Disease-related PS was unrelated to maternal psychological-distress. 
Multiple illnesses 
    Bordeau et al., 2007 (Asthma; CF; Diabetes)  8–18 (200) PSI/SF Greater PS correlated with lower income, less maternal education, less child self-care behaviors, greater parental overprotection, and greater perceived child vulnerability. Greater PS predicted less child self-care behaviors. 
    Carpentier et al., 2008 (Asthma; Diabetes; CF)  8–18 (231) PSI/SF Greater PS correlated with greater parental protective behaviors, and greater perceived child vulnerability. 
    Chiou & Hsieh, 2008a (Asthma; Epilepsy)  8–13 (102) PSIc Parents of children with epilepsy had greater overall PS. Less PS predicted better self-concept in children with epilepsy. 
    Chiou & Hsieh, 2008b (Asthma; Epilepsy)  8–13 (103) PSIc Parent gender, child age, age of onset, illness severity, and family SES did not predict PS. Parents of children with epilepsy had greater overall PS. 
    Driscoll et al., 2010 (CF; Diabetes)  0–12 (195) FSS Greater disease-specific stress predicted more depressive symptoms in caregivers of children with diabetes and caregivers of children with CF. 
    Fedele, Grant, Wolfe-Christensen, Mullins, & Ryan, 2010 (Asthma; Cancer; CF; Diabetes; SCD)  0–18 (457) PSI/SF Results support the use of the PSI/SF with childhood chronic illness populations. 
    Hullman et al., 2010 (Asthma; Cancer; CF; Diabetes)  0–18 (425) PSI/SF PS correlated with lower family income. Parents of children with asthma or diabetes reported greater PS than parents of children with cancer or CF. 
    Mullins et al., 2011 (Asthma; Cancer; CF; Diabetes; SCD) Hemophilia 1–18 (368) PSI/SF Single mothers reported greater disease-related PS than married mothers; income was found to mediate this relationship. 
    Mullins et al., 2007 (Asthma; Diabetes)  8–12 (164) PSI/SF Greater PS correlated with lower family income, greater protective parenting behaviors, and greater perceived child vulnerability. PS predicted youth illness uncertainty. 
Study Comparison Group(s) Agea (NPS Measure Results (Effect Size)b 
Arthritis 
    Anthony et al., 2011  8–16 (51) Hassles and Uplifts Scale Greater PS predicted child depressive symptoms and pain intensity. PS was unrelated to child anxiety symptoms. 
    Iwamoto et al., 2008  NR (40) Caregiver Burden Scale PS was unrelated to parent education level, duration of juvenile arthritis, and parental employment. Mothers reported greater PS than fathers. 
    Manuel, 2001  5–16 (92) 4-item rating scale Greater disease-related PS correlated with greater daily hassles, greater family conflict, and greater parental psychological distress. Child illness severity and functional status were unrelated to disease-related PS. More positive appraisal of the child’s illness situation was associated with decreased parental psychological distress, even when PS was high. 
Asthma 
    cCaffrey-Craig, 2005 Healthy controls 10–12 (110) PSI No differences in PS were observed. PS was unrelated to peak flow variability (ES = .42). 
    Carson & Schauer, 1992  8–13 (41) PSI PS was greater for mothers of children with asthma when compared to norms. 
    Celano et al., 2011  8–13 (43) PSI/SF Less PS was associated with better illness management/adherence. 
    Celano, Holsey, & Kobrynski, 2012  8–13 (43) PSI/SF PS declined for caregivers in both the home-based family intervention group and for caregivers in the enhanced treatment as usual group. 
    DeMore et al., 2005 6–12 (45) PSI/SF Greater PS correlated with greater medication adherence. 
    Fagnano et al., 2009  4–10 (194) PSI (5 items) Parents of children with asthma and sleep-disordered breathing reported greater PS than parents of children with asthma only. 
    cGupta, 2007 ADHD; DD; HIV; Healthy controls NR (146) PSI Parents of children with ADHD or DD reported greater total PS than parents of children with asthma or HIV (ES = .52). 
    Joseph et al., 2003  2–18 (26) PSI/SF Greater PS correlated with poorer mite control adherence. 
    Lee et al., 2006  6–12 (37) Care of My Child with Asthma Scale European American caregivers reported that providing emotional support to child was the most time-consuming demand. African American caregivers reported that balancing demands outside the home and managing asthma treatments were most time-consuming. 
    cMarkson & Fiese, 2000 Healthy Controls 6–12 (86) PSI No group differences in PS were observed (ES = .12). 
    Svavarsdottir et al., 2000  0–6 (75) Care of My Child with Asthma Scale Providing emotional support to child was the most time-consuming caregiving task reported by mothers and fathers. Mothers reported that managing own fatigue while caring for their child, handling asthma episodes, and managing problematic child behaviors were the most difficult tasks. Fathers reported that handling asthma episodes, managing problematic child behaviors, and providing emotional support for spouse/partner were the most difficult tasks. 
    Svavarsdottir & Rayens, 2003  0–6 (179) Care of My Child with Asthma Scale No differences in PS were found between American and Icelandic parents. Disease-related PS was greatest for American and Icelandic mothers when compared to fathers. Greater disease-related PS was associated with negative parental perceptions about child’s health. 
    cWalker et al., 2007 Eczema; Healthy Controls 7–12 (232) PSI No group differences in PS were observed. Child psychosocial morbidity was unrelated to PS (ES = −.30). 
Cancer 
    Colletti et al, 2008  2–12 (62) PSI/SF Greater PS predicted poorer child behavioral, emotional, and social adjustment. 
    Fedele et al., 2011  2–10 (22) PSI/SF Greater PS at baseline predicted at baseline more child externalizing and internalizing problems 12–24 months later. 
    Fernandes, Muller, & Rodin, 2012  0–18 (65) PSS Greater PS correlated with more avoidant and anxious adult attachment and more parental depressive symptoms. Attachment styles predicted PS. 
    Hung, Wu & Yeh, 2004 CP; Spina Bifida 0–18 (181) PSI/SFc Parents of children with cancer reported the greatest PS. 
    Kazak & Barakat, 1997  NR (29) PSI/SF Greater PS correlated with greater parental state anxiety and greater paternal symptoms of PTSD. 
    Kazak et al., 1996  NR (236) PSI/SF Greater PS was correlated with procedural distress for fathers, but not for mothers. 
    Kronenberger et al., 1998  3–20 (24) CIPSQ Disease-related PS did not relate to parent psychological distress. 
    Litzelman et al., 2011  NR (75) Caregiver Reaction Assessment PS mediated the relationship between child cancer-related factors (e.g., activity limitations, active treatment status) and parental QOL. 
    Roddenberry & Renk, 2008  NR (63) PSI/SF Greater maternal PS correlated with poorer child QOL and more externalizing child behavior problems, but not to child depressive or anxiety symptoms. Greater paternal PS correlated with more externalizing child behavior problems and child depressive symptoms. 
    Shapiro, Perez, & Warden, 1998  2–16 (29) 4- item rating scale Greater PS correlated with less positive communication with spouse. PS was unrelated to the quality of the family’s relationship with the doctor. 
    Streisand et al., 2001  0–21 (126) PIP; PSI/SF Greater disease-related PS correlated with parental state anxiety and general PS. 
    Streisand et al., 2003  0–21 (116) PIP Greater disease-related PS was related to poorer family functioning. 
    Vrijmoet-Wiersma et al., 2010  0–18 (174) PIPc; PSI/SFc Mothers reported greater disease-related PS than fathers. Caregivers of young children, children on treatment, and children recently diagnosed reported greater disease-related PS. Disease-related PS correlated with greater caregiver anxiety symptoms and psychological distress. Disease-related PS correlated with general PS. 
    Wolfe-Christensen et al., 2010  2–12 (36) Care of My Child with Cancer Scale; PSI/SF Only general PS correlated with greater child externalizing and internalizing symptoms and fewer child prosocial behaviors. General PS moderated relationship between disease-related PS and child internalizing symptoms. Combination of low general PS and high disease-related PS was associated with fewer child internalizing symptoms. 
    Yeh, 2002  0–18 (328) PSI/SFc Mother and father reports of PS were similar. Mothers and fathers of children who were off-treatment reported the greatest PS. 
    Yeh, 2003  0–18 (441) PSI/SFc Coping style mediated the relationship between PS and parental psychological distress (e.g., somatization, anxiety, depression). Greater social support correlated with less PS. 
    Yeh, Chen, Li, & Chuang, 2001  0–18 (149) PSI/SFc; S-PSI/SF Results supported the validation of the simplified Chinese version of the PSI/SF. 
Cystic fibrosis 
    cBaroni et al., 1997 Healthy Controls 1–10 (98) PSI No group differences in total PS scores observed (ES = −.12). 
    cCrist et al., 1994 Healthy Controls 1–7 (44) PSI PS was greater for caregivers of children with CF (ES = .63). 
    Czyzewski et al., 1994  0–18 (199) PSI PS was unrelated to parent and youth report of quality of well-being. 
    cDarke & Goldberg,1994 CHD; Healthy Controls 0–2 (78) PSI Greater PS experienced by fathers correlated with less positive father–infant interactions. No group differences in father-reported PS. Mothers of children with illness reported greater PS (ES = .85). 
    Eddy et al., 1998  3–11 (41) PSI/SF Greater PS correlated with poorer compliance to physiotherapy and dietary regimen. 
    Goldberg et al., 1997 CHD; Healthy Controls 4 (137) PSI PS predicted child behavior problems (internalizing and externalizing) across all groups. 
    cGoldberg et al., 1990 CHD; Healthy Controls 0–1 (71) PSI Parents of children with illness reported the greatest PS. Parents of children with CF reported greater stress related to child demandingness than parents of children with CHD (ES = .68). 
    Quittner, DiGirolamo, Michel, & Eigen, 1992  NR (64) PSI; Parenting Routines Inventory – Stress Scale Compared with norms, PS was greater for parents of children with CF. Mothers reported greater stress related to caregiving than fathers. 
    Quittner et al., 1998 Healthy Controls 2–6 (66) FSS Mothers of children with CF reported greater PS than mothers of healthy children. Fathers of children with CF reported less PS than fathers of healthy children. 
    cSolomon & Breton, 1999 Healthy Controls 1–2 (49) PSI A greater percentage of parents of children with CF endorsed PS levels above the clinical cutoff. Parents of children with CF reported that their children were more demanding, contributing to increased PS (ES = .61). 
    Thompson et al., 1992  7–17 (68) 4-item rating scale Greater disease-related PS correlated with greater maternal psychological distress. 
    Tluczek et al., 2011 CF carriers; Congenital Hypothyroidism <6 mos. (136) PSI Greater PS was associated with greater perceived child vulnerability. 
Diabetes 
    Chisholm et al., 2007  2–8 (65) PSI/SF PS was unrelated to diabetes knowledge, injection frequency, injection time variability, number of blood glucose tests, and nonmilk extrinsic sugars intake. 
    Cunningham, Vesco, Dolan, & Hood, 2011  13–18 (147) PAID-P Perceived illness-specific PS mediated the relationship between caregiver depressive symptoms and youths’ glycemic control. Partial mediation was found for the relationship between caregiver anxiety symptoms and youths’ glycemic control. 
    Hansen et al., 2012  7–14 (125) PIP Mothers reported greater frequency of disease-related PS than fathers. Working mothers and fathers who were more involved in their child’s care reported greater disease-related PS. Greater disease-related PS correlated with greater sleep disturbances, greater symptoms of depression and anxiety, and poorer marital satisfaction in mothers and fathers. Greater paternal disease-related PS correlated with younger child age and higher A1c. 
    cHauenstein, Marvin, Snyder, & Clarke, 1989 Healthy Controls 0–11 (70) PSI Child age, sex, and A1c were unrelated to total PS. No group differences in total PS were observed between the parents of children with diabetes and parents of healthy children (ES = .51). 
    Helgeson et al., 2012  10–14 (132) Parental Stress Subscale PS predicted greater caregiver depressive symptoms and poorer life satisfaction. Greater PS was associated with greater child depressive symptoms, higher A1c, and less child self-care behaviors. Greater child self-care behaviors were associated with declines in PS. 
    Hilliard et al., 2010  2–6 (73) PIP Greater disease-related PS was associated with more child behavior problems. 
    Jeha et al., 2005  1–6 (10) PSI/SF No changes in PS levels were observed amongst caregivers of young children at three time points: pre-pump therapy, 3 months of pump therapy, 6 months of pump therapy. 
    Kaugars, Kichler, & Alemzadeh, 2011  12–17 (69) SIPA Parents of adolescents in the action/maintenance stage with regards to readiness to change the balance of treatment responsibility reported lower levels of PS. 
    Kirk et al., 2011 DSD NR (98) PSI/SF No group differences in PS were observed. 
    Lewin et al., 2005  8–19 (28) PIP Greater disease-related PS correlated with greater maternal state anxiety and more child internalizing/externalizing behaviors. 
    Mitchell et al., 2009  2–6 (43) PIP Greater disease-related paternal PS correlated with lower self-efficacy about diabetes management, greater fear of child hypoglycemia episodes, less hope, and greater child behavior problems. Duration of child’s diabetes was unrelated to disease-related paternal PS. 
    Monaghan et al., 2009  2–6 (71) PIP Parents who sometimes performed nocturnal blood glucose monitoring reported greater disease-related PS than parents who rarely/never did this nighttime task. 
    Monaghan et al., 2011  2–5 (24) PIP A telephone-based supportive intervention for parents of young children with diabetes decreased disease-related PS. 
    Muller-Godeffroy et al., 2009  4–16 (117) PIPc Parents reported a decline in disease-related PS after transitioning to pump therapy. 
    Mullins et al., 2004  8–12 (43) PSI/SF Greater PS correlated with greater perceived child vulnerability and more child depressive symptoms. PS was unrelated to physician rating of disease severity, duration of diabetes, family income, and maternal education level. Greater perceived child vulnerability as moderated by PS predicted child depressive symptoms. 
    Nabhan et al., 2009  0–5 (42) PSI No differences in PS were found between parents of children using insulin pump therapy and parents of children using insulin injection therapy. 
    Patton et al., 2011  2–7 (39) PIP Greater PS correlated with greater parental fears of hypoglycemia and more parental depressive symptoms. 
    cPowers et al., 2002 Healthy Controls 1–6 (80) PSI Parents of children with diabetes reported greater PS. Greater PS correlated with more mealtime child behavior problems (ES = .60). 
    Stallwood, 2005  0–9 (73) PAID; ADS Greater disease-related PS was associated with younger child age. Parental perception of disease-related PS was associated with better youth metabolic control. 
    Streisand et al., 2008  1–17 (102) PIP Disease-related PS was greater among younger parents, mothers, and families with lower incomes. Greater disease-related PS correlated with more symptoms of parental depression and anxiety. PS mediated relationship between parental gender and anxiety and depression. 
    Streisand, Mackey, & Herge, 2010  0–17 (278) 4-item rating scale Greater PS correlated with decreased parental psychological well-being. 
    Streisand et al., 2005  9–17 (134) PIP Greater disease-related PS correlated with younger child age, parent minority status, lower socioeconomic status, single-parent family structure, insulin injection treatment, and poorer youth metabolic control. Lower self-efficacy, greater responsibility for treatment regimen, and greater fears of hypoglycemia were associated with more frequent disease-related PS. Greater difficulty with disease-related PS was associated with greater responsibility for treatment regimen and greater fears of hypoglycemia. PS was unrelated to disease duration. 
    Wu et al., 2010  12–17 (62) SIPA PS did not differ amongst caregivers of teens on pump therapy and caregivers of teens using insulin injection therapy. Greater PS was correlated with older child age, but unrelated to child age at diagnosis, child gender, duration of diabetes, and family socioeconomic status. Greater PS was related to lower child QOL and poorer metabolic control. 
    Wysocki et al., 1989  2–6 (20) PSI PS was greater for parents of children with diabetes when compared to norms. Greater PS was correlated with more diabetes-related child behavior problems. 
Epilepsy 
    Camfield et al., 2001  2–16 (97) PSI PS was greatest for caregivers reporting high impact of epilepsy on the child/family. 
    Cushner-Weinstein et al., 2008  7–16 (65) PSI/SF Greater PS correlated with greater child depressive symptoms. Parents of children with epilepsy and learning disabilities reported higher PS than parents of children with epilepsy only. PS was unrelated to polytherapy, seizure frequency, seizure type, duration of the disorder, and age at onset. 
    Levin & Banks, 1991  1–19 (25) PSI Fathers of children with epilepsy reported greater PS than normative group. No differences for mothers. Greater PS correlated with parental unemployment, seizure type (not well-controlled), and greater number of child medications. PS was unrelated to parent sex, parent age, parent education, family income, frequency of seizures, and child’s age at diagnosis. 
    cMattie-Luksic, Javornisky, & DiMario, 2000 Breath Holders; Healthy Controls 1–8 (66) PSI Parents of children with epilepsy or severe breath-holding reported greater PS than parents of healthy children (ES = .88). 
    cModi, 2009 Healthy Controls 2–12 (59) PSI; Family Stress Scale – Seizure No group differences in PS were observed (ES = .51). 
    Pulsifer, Gordon, Brandt, Vining, & Freeman, 2001  1–16 (65) PSI/SF PS remain unchanged 1-year after initiating a ketogenic diet for difficult-to-control seizures. 
    Rodenburg et al., 2007  4–18 (91) PSIc; Parental Burden of Caregiving Scale Greater PS correlated with more behavioral problems due to child’s illness, more difficult child temperament, more symptoms of parental depression, less social support, lack of family cohesion, less marital satisfaction, lower levels of parent-child relationship quality, less supportive parenting, and lower levels of behavioral and psychological control. The use of more emotion-focused coping behaviors was related to greater PS. Child illness-related behavioral problems, child temperament, and parental depression contributed most significantly to predicting PS. PS mediated the relationships between familial risk/resilience factors and parenting dimensions. 
    Shatla et al., 2011  9–12 (23) PSIc Greater PS correlated with greater seizure severity and more child internalizing problems. Parents of children with intractable seizures reported greater PS than parents of children with controlled seizures. 
    Sheeran, Marvin, & Pianta, 1997b CP 1–4 (97) PSI/SF Greater PS correlated with maternal nonresolution of child’s diagnosis. 
    Wirrell et al., 2008  2–18 (52) PSI Compared to norms, PS was higher for parents of children with epilepsy. PS was unrelated to child internalizing symptoms, child adaptive behaviors, autism diagnosis, child age, disease-related characteristics (e.g., seizure frequency), family income, family structure, and parental education. Greater PS correlated with greater child externalizing symptoms and poorer overall child emotional/behavioral functioning. 
Sickle cell disease 
    Barakat et al., 2007b  3–5 or 12–18 (68) PIP Parents of adolescents reported greater PS related to disease-related communication than parents of preschoolers. Lower income and more pain episodes were associated with greater PS. Higher income and better family functioning predicted less PS. 
    Barakat et al., 2008  12–18 (42) PIP Greater disease-related PS was associated with more frequent youth pain episodes, greater symptoms of youth depression and anxiety, and poorer youth HRQOL. Disease-related PS mediated relationship between pain frequency and QOL. 
    Barakat et al., 2007  12–18 (41) PIP Greater disease-related PS at baseline was associated with greater disease severity/health care utilization one year later. 
    Hall et al., 2012 ASD; CP; Down Syndrome NR (25) PSI/SF No group differences in PS were observed. 
    Logan et al., 2002  12–18 (70) PIP Greater disease-related PS correlated with less family income, more stressful life events, greater disease severity, and more routine and urgent service uses. 
    Olley, Brieger, & Olley, 1997  0–21 (200) 30- item rating scale Monogamously married mothers reported less PS than non-married mothers or those in polygamous marriages. Younger and Christian mothers reported less PS. Mothers of older children and mothers of more than one children with SCD reported greater PS. 
    Tarazi, Grant, Ely, & Barakat, 2007  3–5 (26) PIP Greater difficulty of disease-related PS correlated with lower child motor/visuomotor scores. 
    Thompson et al., 1993  7–17 (78) 4-item rating scale Disease-related PS was unrelated to maternal psychological-distress. 
Multiple illnesses 
    Bordeau et al., 2007 (Asthma; CF; Diabetes)  8–18 (200) PSI/SF Greater PS correlated with lower income, less maternal education, less child self-care behaviors, greater parental overprotection, and greater perceived child vulnerability. Greater PS predicted less child self-care behaviors. 
    Carpentier et al., 2008 (Asthma; Diabetes; CF)  8–18 (231) PSI/SF Greater PS correlated with greater parental protective behaviors, and greater perceived child vulnerability. 
    Chiou & Hsieh, 2008a (Asthma; Epilepsy)  8–13 (102) PSIc Parents of children with epilepsy had greater overall PS. Less PS predicted better self-concept in children with epilepsy. 
    Chiou & Hsieh, 2008b (Asthma; Epilepsy)  8–13 (103) PSIc Parent gender, child age, age of onset, illness severity, and family SES did not predict PS. Parents of children with epilepsy had greater overall PS. 
    Driscoll et al., 2010 (CF; Diabetes)  0–12 (195) FSS Greater disease-specific stress predicted more depressive symptoms in caregivers of children with diabetes and caregivers of children with CF. 
    Fedele, Grant, Wolfe-Christensen, Mullins, & Ryan, 2010 (Asthma; Cancer; CF; Diabetes; SCD)  0–18 (457) PSI/SF Results support the use of the PSI/SF with childhood chronic illness populations. 
    Hullman et al., 2010 (Asthma; Cancer; CF; Diabetes)  0–18 (425) PSI/SF PS correlated with lower family income. Parents of children with asthma or diabetes reported greater PS than parents of children with cancer or CF. 
    Mullins et al., 2011 (Asthma; Cancer; CF; Diabetes; SCD) Hemophilia 1–18 (368) PSI/SF Single mothers reported greater disease-related PS than married mothers; income was found to mediate this relationship. 
    Mullins et al., 2007 (Asthma; Diabetes)  8–12 (164) PSI/SF Greater PS correlated with lower family income, greater protective parenting behaviors, and greater perceived child vulnerability. PS predicted youth illness uncertainty. 

Note. PS = parenting stress; NR = not reported; PSI = Parenting Stress Index; PSI/SF = Parenting Stress Index/Short Form; DD = developmental disabilities; PSS = Parental Stress Scale; CIPSQ = Chronic Illness Parental Stress Questionnaire; QOL = quality of life; PIP = pediatric inventory for parents; S-PSI/SF = simplified PSI/SF; CF = cystic fibrosis; CHD = congenital heart disease; FSS = Family Stress Scale; PAID-P = pediatric assessment in diabetes-parent version; SIPA = Stress Index for Parents of Adolescents; ADS = appraisal of diabetes scale; CP = cerebral palsy; ASD = autism spectrum disorder; HRQOL = health-related quality of life; SCD = sickle cell disease; SES = socioeconomic status.

aChild age range in years.

bEffect size of study included in meta-analysis. A positive effect size indicates a relationship between caregiver status (caregiver of child with chronic illness) and parenting stress.

cTranslated instrument.

What measures are used to assess parenting stress in parents of children with chronic illness?

A complete list of measures used to assess both general and disease-related parent/caregiver stress can be found in Table I. The majority of the included studies assessed general parenting stress using the generic 120-item PSI (Abidin, 1995) (n = 27) or the 36-item shortened version (PSI/SF; Abidin, 1990) (n = 31). The PSI and PSI/SF measure stress within the parent–child system. Parents indicate the degree to which they agree with a statement (e.g., “You feel trapped by your responsibilities as a parent.”) (Abidin, 1995). Both measures were translated into other languages, such as Dutch (Rodenburg, Meijer, Dekovic, & Aldenkamp, 2007) and Chinese (e.g., Chiou & Hsieh, 2008a; Yeh, 2002, 2003).

Results of the review revealed that the 42-item Pediatric Inventory for Parents (PIP; Streisand et al., 2001) was the most commonly used measure of disease-related parenting stress (n = 18). The PIP asks parents to indicate the frequency at which disease-related parenting stressor occurs, and the difficulty-level of each stressor (Streisand et al., 2001). The PIP has been used to assess disease-related parenting stress among parents of children with cancer (e.g., Vrijmoet-Wiersma et al., 2010), diabetes (e.g., Hansen, Schwartz, Weissbrod, & Taylor, 2012; Lewin et al., 2005), and sickle cell disease (e.g., Barakat et al., 2007a, 2007b,).

Do reports of parenting stress differ among groups of parents (e.g., parents of children with various chronic conditions, parents of healthy children)?

Meta-analysis was conducted to compare parenting stress for parents of children with chronic illness to parenting stress for parents of healthy children. Effect sizes ranged from −.30 to .88 across the 13 studies (see Table I). Homogeneity of effect sizes was rejected (Q = 24.21, p ≤ .05), suggesting that a fixed effects model would not be appropriate (Lipsey & Wilson, 2001). In addition, examination of the coded methodological differences across studies did not suggest the presence of systematic differences that could account for differences in effect sizes. Results of the random effects meta-analysis indicated that parents of children with chronic illness reported greater general parenting stress than parents of healthy children. The weighted mean effect size fell in the small to medium range [d = .40, 95% CI = .19–.61, p ≤ .0001]. The 13 studies included in the meta-analysis are described in Table I and highlighted with an asterisk.

Using qualitative analysis, studies comparing parenting stress across illness populations were examined. Hullmann et al. (2010) found that parents of children with asthma or diabetes reported greater general parenting stress than parents of children with cancer or cystic fibrosis. Chiou and Hsieh (2008a, b) found that parents of children with epilepsy endorsed greater general parenting stress than parents of children with asthma. Disease-related parenting stress, as measured by the PIP (Streisand et al., 2001), was similar among parents of children with sickle cell disease (Barakat, Patterson et al., 2007a) and parents of children with diabetes (Streisand, Swift, Wickmark, Chen, & Holmes., 2005). Parents of children with sickle cell disease reported a greater frequency of disease-related parenting stress than parents of children with cancer, but parents of children with cancer indicated that the stressors related to caring for a child with cancer were more difficult, despite occurring less frequently (Barakat, Patterson et al., 2007a, 2007b; Streisand et al., 2001; Streisand, Kazak, & Tercyak, 2003).

Do characteristics of the causal agent (i.e., illness parameters) contribute to parenting stress?

Consistent with the Transactional Stress and Coping Model (Thompson et al., 1992, 1993; Thompson & Gustafson, 1996), a qualitative analysis of associations between illness parameters and parenting stress across pediatric illness populations was conducted. The measures of parenting stress used and the results of each study are detailed in Table I.

Asthma. A number of studies examined whether disease-related factors were related to parenting stress in caregivers of children with asthma (e.g., Celano, Klinnert, Holsey, & McQuaid, 2011; DeMore, Adams, Wilson, & Hogan, 2005). European American parents reported that providing emotional support to their child with asthma was the most time-demanding caregiving task, whereas African American parents reported that managing demands outside of the home and the child’s treatment regimen were the most time-demanding tasks (Lee, Parker, DuBose, Gwinn, & Logan, 2006). Celano et al. (2011) reported that better family management of asthma across a number of domains (e.g., medication adherence, asthma knowledge) was associated with less general parenting stress, while Joseph, Adams, Cottrell, Hogan, & Wilson (2003) demonstrated a similar association between better adherence to dust mite control and less parenting stress. However, DeMore et al. (2005) found that greater medication (inhaler) adherence was associated with increased general parenting stress. Variations in how adherence was assessed may account for these differences. Age of asthma onset, peak flow variability, and illness severity were unrelated to general parenting stress (Chiou & Hsieh, 2008b; Caffrey-Craig, 2005), whereas the existence of sleep-disordered breathing in addition to asthma was associated with greater general parenting stress (Fagnano et al., 2009).

Cancer. A number of cancer-related factors were found to be associated with general parenting stress. For example, activity limitations due to cancer and on-treatment status, were found to be associated with poor parental quality of life, which was mediated by parenting stress (Litzelman, Catrine, Gangnon, & Witt, 2011). Greater paternal distress related to the invasive procedures that a child must undergo (e.g., lumbar punctures, bone marrow aspirations) was also found to be associated with greater general parenting stress for fathers but not mothers (Kazak, Penati, Waibel, & Blackall, 1996). Disease-related parenting stress was greater for parents of children recently diagnosed with cancer and/or currently on-treatment among a Netherlander sample of caregivers (Vrijmoet-Wiersma et al., 2010). However, in a sample of Taiwanese caregivers, parents of children off-treatment endorsed the greatest parenting stress (Yeh, 2002). Cultural differences may account for these differences, as Leavitt et al. (1999) found that Chinese caregivers of children with cancer reported more isolation and less attention to emotional distress when compared with Caucasian parents. These differences in coping may result in sustained and increased distress overtime.

Cystic Fibrosis. Fewer child self-care behaviors (Bourdeau, Mullins, Carpentier, Colletti, & Wolfe-Christensen, 2007) were associated with greater general parenting stress in caregivers of children with cystic fibrosis. Similarly, in a sample of caregivers of children ages 3–11 years, greater general parenting stress was associated with poorer adherence to the treatment regimen (i.e., chest physiotherapy, dietary regimen; Eddy et al., 1998). Furthermore, parents of children with cystic fibrosis reported that their children were more demanding than healthy controls as measured by the PSI (Goldberg, Morris, Simmons, Fowler, & Levison, 1990; Solomon & Breton, 1999). Although based on a general measure of parenting stress, the treatment regimen for cystic fibrosis is demanding and time consuming, which may be reflected by these findings.

Diabetes. Results of the review were inconsistent with regards to associations between parenting stress and youth metabolic control in children with diabetes. Greater general parenting was associated with poorer metabolic control in children ranging in age from 10 to 17 years (Helgeson, Becker, Escobar, & Siminerio, 2012; Wu, Graves, Roberts, & Mitchell, 2010). Using illness-specific parenting stress measures, a similar relationship was found in caregivers of children ranging in age from 7 to 17 years (Hansen et al., 2012; Streisand et al., 2005). However, in a younger sample (0–9 years), Stallwood (2005) found the reverse, with greater disease-related parenting stress relating to better metabolic control. It may be that higher disease-related parenting stress in caregivers of younger children is an indicator of greater adherence behaviors, as these parents often take on more responsibility for disease management. Consistent with this notion, parents with greater responsibility for their child’s treatment regimen (Streisand et al., 2005) and those who performed nocturnal blood glucose checks endorsed more parenting stress (Monaghan, Hilliard, Cogen, & Streisand, 2009). Other diabetes-related factors related to greater parenting stress included less child self-care behaviors (Bourdeau et al., 2007; Helgeson et al., 2012) and more frequent diabetes-related child behavior problems (e.g., refusing blood glucose checks; Wysocki, Huxtable, Linscheid, & Wayne, 1989). Diabetes duration (Mitchell et al., 2009; Mullins et al., 2004; Wu et al., 2010), child age at diagnosis (Wu et al., 2010), illness severity (Mullins et al., 2004; Streisand et al., 2005), and parental diabetes knowledge (Chisholm et al., 2007) were unrelated to parenting stress.

Epilepsy. Greater negative impact of epilepsy on the family and child, and the presence of intractable seizures were associated with greater general parenting stress (e.g., Camfield, Breau, & Camfield, 2001; Shatla, El said Sayyah, Azzam, & Elsayed, 2011). Illness-related child behavior problems significantly contributed to greater parenting stress (Rodenburg et al., 2007). Age of onset, illness severity, and seizure frequency were unrelated to parenting stress (e.g., Cushner-Weinstein et al., 2008; Wirrell, Wood, Hamiwka, & Sherman., 2008).

Juvenile Rheumatoid Arthritis.Anthony, Bromberg, Gil, & Schanberg (2011) reported a positive association between parenting stress and child’s pain intensity. Manuel (2001) noted that child illness severity as measured by prescribed medications and functional status were unrelated to parenting stress. Similar to findings across other conditions (e.g., diabetes), parenting stress was unrelated to illness duration (Iwamoto, Santos, Skare, & Spelling, 2008).

Sickle Cell Disease. More frequent pain episodes were associated with greater disease-related parenting stress in caregivers of both young children (3–5 years) and adolescents (12–18 years) with sickle cell disease (Barakat, Patterson, Daniel, & Dampier, 2008; Barakat, Patterson et al., 2007b). Logan, Radcliffe, & Smith-Whitley (2002) found that greater disease-related parenting stress was associated with more frequent use of both routine and urgent health care services. Communication with adolescents about sickle cell–related issues was found to be a considerable source of stress for parents (Barakat, Patterson et al., 2007b).

Do parental illness-related cognitive appraisals relate to parenting stress outcomes?

The Transactional Stress and Coping Model (Thompson et al., 1992, 1993; Thompson & Gustafson, 1996) posits that illness-related cognitive appraisals are an important process for understanding maternal adaptation to pediatric illness. A number of studies have examined illness-related cognitive appraisals in caregivers of children with chronic illness. Across illness populations (i.e., asthma, cystic fibrosis, diabetes), greater perceived child vulnerability and overprotectiveness of the child, as reported by the parent, was associated with increased general parenting stress (e.g., Bourdeau et al., 2007; Carpentier, Mullins, Wolfe-Christensen, & Chaney, 2008; Mullins et al., 2007; Tluczek, McKechnie, & Brown, 2011). Caregivers of children with asthma who reported more negative perceptions about their child’s health endorsed greater disease-specific parenting stress (Svavarsdottir & Rayens, 2003), whereas positive appraisals of the child’s illness situation attenuated the relationship between disease-related parenting stress and general psychological distress (e.g., depression, anxiety) in caregivers of children with arthritis (Manuel, 2001). In both fathers and mothers of children with diabetes, lower parental self-efficacy about diabetes management and greater fears of hypoglycemia were associated with greater disease-related parenting stress (e.g., Mitchell et al., 2009; Patton, Dolan, Smith, Thomas, & Powers, 2011).

Do parent coping mechanisms relate to parenting stress outcomes?

Although methods of coping are a key component of the guiding theoretical framework, only two studies examined relationships between parental coping styles and parenting stress. Rodenburg et al. (2007) found that the use of more emotion-focused coping behaviors (e.g., avoidance) in caregivers was associated with greater general parenting stress in caregivers of children with epilespy. The use of problem-focused coping behaviors was unrelated to parenting stress (Rodenburg et al., 2007). Yeh (2003) found that parenting stress activated the use of both emotion-focused (e.g., maintaining optimism) and problem-focused coping behaviors (e.g., learning about illness, interacting with spouse, religious involvement) in caregivers of children with cancer. Consistent with the Transactional Stress and Coping Model (Thompson et al., 1992, 1993; Thompson & Gustafson, 1996), better family functioning (e.g., positive communication, cohesiveness) was found to be associated with less parenting stress among caregivers of children with cancer, epilepsy, and sickle cell disease (e.g., Barakat, Patterson, et al., 2007b; Rodenburg et al., 2007; Streisand et al., 2003).

Does parenting stress relate to parent and child psychological adjustment and health-related outcomes?

Owing to a limited number of longitudinal studies, it is difficult to ascertain the directionality of associations between parenting stress and parent and child psychological and health-related outcomes. For parents, greater general and disease-related parenting stress was associated with psychological distress (e.g., depressive and anxiety symptomology) in caregivers of children with arthritis (Manuel, 2001), cystic fibrosis (Driscoll et al., 2010; Thompson et al., 1992), and diabetes (Driscoll et al., 2010; Hansen et al., 2012; Helgeson et al., 2012; Patton et al., 2011; Streisand et al., 2008). Kazak and Barakat (1997) reported positive associations between general parenting stress and parental state anxiety and posttraumatic stress disorder symptoms in caregivers of children with cancer.

With regards to child psychological outcomes, disease-related parenting stress was associated with more child depressive symptoms in children with juvenile rheumatoid arthritis (Anthony et al., 2011), sickle cell disease (Barakat et al., 2008), and diabetes (Helgeson et al., 2012; Hilliard, Monaghan, Cogen, & Streisand, 2010). Greater general parenting stress was also associated with more depressive symptoms for children with juvenile rheumatoid arthritis (Anthony et al., 2011) and poorer emotional, behavioral, and social adjustment in children with cancer (Colletti et al., 2008; Roddenberry & Renk, 2008). Similarly, greater general parenting stress in caregivers of children with cancer at baseline predicted greater child internalizing and externalizing problems 1–2 years later (Fedele, Mullins, Wolfe-Christensen, & Carpentier, 2011). With regards to health-related outcomes, in a sickle cell disease sample, greater disease-related parenting stress at baseline was associated with greater disease severity and more frequent health care utilization 1 year later (Barakat et al., 2007a).

Discussion

The current review sought to provide a more comprehensive understanding of parenting stress across the childhood chronic illness literature. To our knowledge, this is the first systematic and quantitative review of parenting stress across childhood chronic illness populations. A number of cross-cutting issues, such as familial impact, adherence, pain, and school reintegration, are experienced by children with chronic illness and their families (Power, 2006), underscoring the value of investigations that include various illness populations. Overall, results of the meta-analytic review indicated that caregivers of children with chronic illness endorse greater general parenting stress than caregivers of healthy children. This interesting finding suggests that generic aspects of the caregiving experience, not specific to the child’s chronic illness, bring about greater stress for parents of children with pediatric chronic illnesses. In addition to experiencing greater general parenting stress, caregivers of children with chronic illness are also likely to experience illness-related parenting stress (e.g., frequent clinic appointments, demanding treatment regimens).

Although the use of both generic and illness-specific measures can be valuable and recommended (La Greca & Lemanek, 1996), only four studies were identified that used both types of measures (Modi, 2009; Streisand et al., 2001; Vrijmoet-Wiersma et al., 2010; Wolfe-Christensen et al., 2010). A number of studies that used generic measures of parenting stress did not find associations between parenting stress and various illness parameters (e.g., Chisholm et al., 2007; Nabhan et al., 2009). However, studies using illness-specific measures of parenting stress, such as the PIP (Streisand et al., 2001), often found significant associations between disease-related parenting stress and illness parameters (e.g., Hansen et al., 2012; Muller-Godeffroy, Treichel, & Wagner, 2009). Differences in the type of parenting stress measured (general vs. illness-specific) may explain some of the inconsistencies.

With regards to illness parameters, qualitative analysis across illness populations suggested that general and disease-related parenting stress was associated with greater parental responsibility for treatment management and/or less child self-care behaviors (e.g., Bordeau et al., 2007; Helgeson et al., 2012). This highlights the importance of a teamwork approach to disease management. It may be that parents who assume much of the responsibility for care are overburdened by the demands. However, if a child takes on all responsibility, parents may find themselves worried about whether or not their child is correctly adhering to the treatment regimen. Encouraging parents and children to collaboratively manage treatment demands may decrease parenting stress and increase adherence.

General and disease-related parenting stress was unrelated to illness duration (e.g., Mitchell et al., 2009; Wu et al., 2010) and illness severity (e.g., Streisand et al., 2005) across various illness populations. However, more frequent and/or intense child pain episodes were related to parenting stress in both caregivers of children with arthritis and sickle cell disease (e.g., Anthony et al., 2011; Barakat et al., 2008). It may be that parents feel particularly helpless when their child is in pain. Efforts that specifically facilitate parental coping with child pain may be an effective and directive intervention target that can be applied across illness populations. As more investigations are conducted regarding the relationships between various illness parameters and parenting stress, future meta-analytic investigations would advance our understanding of these relationships.

Consistent with the theoretical framework that guided some of the predetermined questions, the current review supported the role of cognitive processes. For example, while negative perceptions about a child’s illness situation related to greater disease-related parenting stress (Svavarsdottir & Rayens, 2003), positive appraisals served as a protective factor (Manuel, 2001). Consistent with associations found between “vulnerable child syndrome” (i.e., parents perceive child to be vulnerable; Green & Solnit, 1964) and family distress (Green, 1986), parental perceptions of child vulnerability and feelings of insufficiency with regards to one’s ability to manage their child’s illness related to increased general and disease-related parenting stress (e.g., Mitchell et al., 2009; Mullins et al., 2004; Tluczek et al., 2011).

The review revealed a paucity of research on coping mechanisms and both general and disease-related parenting stress, despite the importance of the role of coping mechanisms in stress and coping theories (Lazarus & Folkman, 1984; Thompson et al., 1992; Thompson & Gustafson, 1996). Notably, in concordance with the guiding theoretical framework, one study demonstrated that childhood chronic illness appears to activate the use of coping mechanisms (Yeh, 2003). Although definitive conclusions cannot be made based on the results of a single study, emotion-focused coping mechanisms (e.g., avoidance) related to greater general parenting stress (Rodenburg et al., 2007). It may be that although the avoidance of negative feelings associated with a child’s illness provides some relief, the consequences of avoidance behaviors induce greater stressors (e.g., adherence problems).

Although based largely on correlational studies, results of the review provided strong evidence that increased general and disease-related parenting stress is associated with adverse psychological adjustment in caregivers and children (e.g., Hilliard et al., 2010; Kazak & Barakat, 1997). Parenting stress may also contribute to poorer child health-related outcomes (Barakat et al., 2007a). In an effort to promote positive health and psychological outcomes in children with chronic illness, parenting stress can serve as a modifiable intervention target. This review highlights the importance of future intervention efforts aimed at preventing or reducing parenting stress among caregivers of children with chronic illness. However, few interventions have been designed to address this need. Notably, Monaghan, Hilliard, Cogen, & Streisand. (2011) developed a brief, five-session, phone-based intervention to support parents of young children with diabetes, which decreased disease-related parenting stress. As the field moves forward and considers the use of targeted interventions to decrease parenting stress in caregivers of children with chronic illness, it will be advantageous to build on the work of more generalized interventions for promoting parental coping with childhood chronic illness (e.g., Hoff et al., 2005; Kazak et al., 2005).

Results of this review should be interpreted in light of its limitations. Some studies may not have been identified through the search methods used. Attempts were made to identify all relevant research; however, variations in the terminology used to describe parenting stress across a broad and expansive literature posed challenges for identifying all studies meeting the inclusion criteria. Additionally, inclusion criteria were strict, limiting the review to studies that included a quantitative measure of general and/or disease-related parenting/caregiving stress. Studies that qualitatively assessed parenting stress (e.g., interviews), family stress (e.g., family burden, impact on family), life stress, or other important parental constructs (e.g., parental negative affectivity) were not included. Findings from studies assessing these domains are important to understanding parenting stress among caregivers of children with chronic illness. For example, results of qualitative studies revealed that others’ misunderstandings about a child’s illness (Sallfors & Hallberg, 2003) and uncertainty about illness course (Filigno et al., 2012) contributed to parenting stress. Lastly, publication bias may have limited the results of the meta-analysis; thus, in accordance with the Cochrane Collaboration (Higgins & Green, 2011), effect sizes and CIs were emphasized when interpreting results.

Overall, this literature is largely limited in its ability to determine causality. The many cross-sectional investigations have provided a sound foundation on which future longitudinal work can be designed. Continued examination of the role of cognitive appraisals and coping mechanisms will help to better inform future interventions. Lastly, while a significant strength of this literature is the diversity of populations examined as evidenced by the inclusion of studies across illness populations and from 12 different countries, additional investigations of parenting stress in caregivers of children with juvenile rheumatoid arthritis, and other chronic conditions, such as kidney disease and irritable bowel syndrome, are warranted.

Acknowledgments

We are grateful to the members of the Pediatric Psychology Writer’s Workshop at Case Western Reserve University for their helpful comments.

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