Psychological interventions for parents of children and adolescents with chronic illness
Psychological therapies for parents of children and adolescents with chronic illness aim to improve parenting behavior and mental health, child functioning (behavior/disability, mental health, and medical symptoms), and family functioning.
This is an updated version of the original Cochrane Review (2012) which was first updated in 2015.
To evaluate the efficacy and adverse events of psychological therapies for parents of children and adolescents with a chronic illness.
We searched CENTRAL, MEDLINE, Embase, PsycINFO, and trials registries for studies published up to July 2018.
Included studies were randomized controlled trials (RCTs) of psychological interventions for parents of children and adolescents with a chronic illness. In this update we included studies with more than 20 participants per arm. In this update, we included interventions that combined psychological and pharmacological treatments. We included comparison groups that received either non‐psychological treatment (e.g. psychoeducation), treatment as usual (e.g. standard medical care without added psychological therapy), or wait‐list.
Data collection and analysis
We extracted study characteristics and outcomes post‐treatment and at first available follow‐up. Primary outcomes were parenting behavior and parent mental health. Secondary outcomes were child behavior/disability, child mental health, child medical symptoms, and family functioning. We pooled data using the standardized mean difference (SMD) and a random‐effects model, and evaluated outcomes by medical condition and by therapy type. We assessed risk of bias per Cochrane guidance and quality of evidence using GRADE.
We added 21 new studies. We removed 23 studies from the previous update that no longer met our inclusion criteria. There are now 44 RCTs, including 4697 participants post‐treatment. Studies included children with asthma (4), cancer (7), chronic pain (13), diabetes (15), inflammatory bowel disease (2), skin diseases (1), and traumatic brain injury (3). Therapy types included cognitive‐behavioural therapy (CBT; 21), family therapy (4), motivational interviewing (3), multisystemic therapy (4), and problem‐solving therapy (PST; 12). We rated risk of bias as low or unclear for most domains, except selective reporting bias, which we rated high for 19 studies due to incomplete outcome reporting. Evidence quality ranged from very low to moderate. We downgraded evidence due to high heterogeneity, imprecision, and publication bias.
Evaluation of parent outcomes by medical condition
Psychological therapies may improve parenting behavior (e.g. maladaptive or solicitous behaviors; lower scores are better) in children with cancer post‐treatment and follow‐up (SMD −0.28, 95% confidence interval (CI) −0.43 to −0.13; participants = 664; studies = 3; SMD −0.21, 95% CI −0.37 to −0.05; participants = 625; studies = 3; I2 = 0%, respectively, low‐quality evidence), chronic pain post‐treatment and follow‐up (SMD −0.29, 95% CI −0.47 to −0.10; participants = 755; studies = 6; SMD −0.35, 95% CI −0.50 to −0.20; participants = 678; studies = 5, respectively, moderate‐quality evidence), diabetes post‐treatment (SMD −1.39, 95% CI −2.41 to −0.38; participants = 338; studies = 5, very low‐quality evidence), and traumatic brain injury post‐treatment (SMD −0.74, 95% CI −1.25 to −0.22; participants = 254; studies = 3, very low‐quality evidence). For the remaining analyses data were insufficient to evaluate the effect of treatment.
Psychological therapies may improve parent mental health (e.g. depression, anxiety, lower scores are better) in children with cancer post‐treatment and follow‐up (SMD −0.21, 95% CI −0.35 to −0.08; participants = 836, studies = 6, high‐quality evidence; SMD −0.23, 95% CI −0.39 to −0.08; participants = 667; studies = 4, moderate‐quality evidence, respectively), and chronic pain post‐treatment and follow‐up (SMD −0.24, 95% CI −0.42 to −0.06; participants = 490; studies = 3; SMD −0.20, 95% CI −0.38 to −0.02; participants = 482; studies = 3, respectively, low‐quality evidence). Parent mental health did not improve in studies of children with diabetes post‐treatment (SMD −0.24, 95% CI −0.90 to 0.42; participants = 211; studies = 3, very low‐quality evidence). For the remaining analyses, data were insufficient to evaluate the effect of treatment on parent mental health.
Evaluation of parent outcomes by psychological therapy type
CBT may improve parenting behavior post‐treatment (SMD −0.45, 95% CI −0.68 to −0.21; participants = 1040; studies = 9, low‐quality evidence), and follow‐up (SMD −0.26, 95% CI −0.42 to −0.11; participants = 743; studies = 6, moderate‐quality evidence). We did not find evidence for a beneficial effect for CBT on parent mental health at post‐treatment or follow‐up (SMD −0.19, 95% CI −0.41 to 0.03; participants = 811; studies = 8; SMD −0.07, 95% CI −0.34 to 0.20; participants = 592; studies = 5; respectively, very low‐quality evidence). PST may improve parenting behavior post‐treatment and follow‐up (SMD −0.39, 95% CI −0.64 to −0.13; participants = 947; studies = 7, low‐quality evidence; SMD −0.54, 95% CI −0.94 to −0.14; participants = 852; studies = 6, very low‐quality evidence, respectively), and parent mental health post‐treatment and follow‐up (SMD −0.30, 95% CI −0.45 to −0.15; participants = 891; studies = 6; SMD −0.21, 95% CI −0.35 to −0.07; participants = 800; studies = 5, respectively, moderate‐quality evidence). For the remaining analyses, data were insufficient to evaluate the effect of treatment on parent outcomes.
We could not evaluate treatment safety because most studies (32) did not report on whether adverse events occurred during the study period. In six studies, the authors reported that no adverse events occurred. The remaining six studies reported adverse events and none were attributed to psychological therapy. We rated the quality of evidence for adverse events as moderate.
Psychological therapy may improve parenting behavior among parents of children with cancer, chronic pain, diabetes, and traumatic brain injury. We also found beneficial effects of psychological therapy may also improve parent mental health among parents of children with cancer and chronic pain. CBT and PST may improve parenting behavior. PST may also improve parent mental health. However, the quality of evidence is generally low and there are insufficient data to evaluate most outcomes. Our findings could change as new studies are conducted.
Emily Law, Emma Fisher, Christopher Eccleston, Tonya M Palermo
Plain language summary
Psychological therapies for parents of children and adolescents with a longstanding or life‐threatening physical illness
We found that psychological therapies may improve parenting behavior for parents of children with cancer, chronic pain, diabetes or traumatic brain injury, and may improve mental health of parents of children with cancer or chronic pain. Cognitive‐behavioral therapy (CBT) and problem‐solving therapy (PST) are promising types of therapy. We were not able to answer questions about whether psychological therapies are helpful for parents of children with other medical conditions, or whether other types of therapy are helpful, because there were not enough data. Our findings may have been impacted by differences in measures used across studies. New studies may change the results of this review, and so our findings should be interpreted cautiously.
We have updated our previously published review of psychological therapies for parents of children with a longstanding or life‐threatening physical illness to include studies published through July 2018.
Parenting a child with a longstanding illness is challenging. Parents may have difficulty balancing caring for their child with other demands and can experience increased stress, sadness, or family conflict. Their children may have emotional or behavioral concerns. Parents can influence their child's adaptation to living with their medical condition. Psychological therapies for parents provide training in skills to modify emotions or behaviors that aim to improve parent, child, and family well‐being.
We wanted to understand whether psychological therapies are helpful for parents of children and adolescents (up to age 19) with longstanding illness. We included studies of interventions that were predominantly psychological and delivered to parents compared with non‐psychological treatment, treatment as usual, or wait‐list. Outcomes were parenting behavior (e.g. protective behaviors), parent mental health, child behavior/disability, child mental health, child medical symptoms, family functioning, and side effects.
We added 21 new studies in this update and we removed 23 studies that no longer met our inclusion criteria, resulting in 44 randomized controlled trials (randomized controlled trials, where participants are assigned randomly to either one treatment or a different treatment or no treatment, provide the most reliable evidence) with a total of 4697 participants (average child age = 11 years). The length of the studies ranged from one day to 24 months. Studies included children with asthma (4), cancer (7), chronic pain (recurrent or persistent pain for more than three months, including two studies of children with inflammatory bowel disease (15)), diabetes (15), skin diseases (1), and traumatic brain injury (3); one study included children with eczema and children with asthma. Therapy types included CBT (21), family therapy (4), motivational interviewing (3), multisystemic therapy (4), and PST (12). Funding sources included federal and local governments, hospitals, universities, and foundations.
We found that parenting behavior improved in studies of children with cancer, chronic pain, diabetes, and traumatic brain injury immediately after treatment, which continued long‐term for parents of children with cancer and chronic pain. Parent mental health improved in studies of children with cancer and chronic pain immediately after treatment, which continued long‐term. Parent mental health did not improve in studies of children with diabetes. We found that CBT and PST improved parenting behavior immediately after treatment, which continued long‐term. PST also improved parent mental health immediately after treatment and long‐term, but CBT did not. We could not evaluate whether the other types of psychological therapy were beneficial for parents due to insufficient data. We found that these treatment effects were generally small. We found that most studies (32 studies) did not report on whether side effects occurred. In the few studies that did, none of the participants experienced side effects from psychological therapy.
Quality of evidence
We rated the quality of the evidence from studies using four levels: very low, low, moderate, or high. Very low‐quality evidence means that we are very uncertain about the results. High‐quality evidence means that we are very confident in the results. There were not enough data to answer some parts of our review questions. There was sufficient evidence (low to moderate quality) to reach some conclusions about the effects of psychological therapy for parents of children with cancer and chronic pain and the effects of CBT and PST.
Emily Law, Emma Fisher, Christopher Eccleston, Tonya M Palermo
Implications for practice
Implications for parents of children with a chronic illness
There is little evidence available to guide parents as to the most effective psychological intervention expected to improve their own mental health or behavioral functioning. We found that cognitive‐behavioral therapy (CBT) and problem‐solving therapy (PST) improved parenting behavior, and PST improved parental mental health. In addition, our findings suggest that CBT is beneficial for improving children's behavior/disability and their medical symptoms (e.g. pain). However, these findings should be interpreted cautiously because they may change as new studies are conducted.
Implications for clinicians
Overall, we judged the evidence as very low to moderate quality. Therefore, results from this update should be interpreted with caution as these findings are likely to change as future studies are conducted.
Findings regarding problem‐solving therapy
- PST is the only therapy included in this review that was routinely delivered only to parents and that was expressly developed to reduce parent distress. We found that PST improved parenting behavior and parent mental health, although these results should be interpreted cautiously because they may change as new studies are conducted.
- We did not find evidence for a beneficial effect of PST on child mental health and too few studies were available to understand the effect of PST on other child outcomes or family functioning.
- Studies of PST were predominantly delivered to parents of children with cancer, but PST has also been evaluated in parents of children with chronic pain, IBD, and TBI.
Findings regarding cognitive‐behavioral therapy
- CBT was typically delivered to both children and parents, and led to improvements in parenting behavior but not parent mental health.
- In contrast to PST, CBT led to improvements in some child outcomes (behavior/disability, medical symptoms).
- These results should also be interpreted cautiously because they may change as new studies are conducted.
- We did not find evidence for a beneficial effect of CBT on children's mental health or family functioning.
Findings regarding family therapy, motivational interviewing, and multisystemic therapy
- This update includes a very small number of studies of family therapy (FT), (motivational interviewing) MI, and multisystemic therapy (MST) which limits our ability to make conclusions about these therapy types.
Implications for policy makers and funders of the interventions
It is surprising how few studies have targeted parenting behavior or mental health, given the ample evidence demonstrating the bidirectional effects of child and parent functioning in the context of chronic illness. When combining all therapies for parenting outcomes, we concluded that the quality of evidence was mostly low to very low, meaning further research is likely to change the estimates of effects. This is primarily due to the small number of studies that reported parent outcomes, particularly for therapy types other than CBT and PST. Thus, additional clinical studies are needed to understand the most effective interventions to implement with parents of youth with chronic health conditions.
Implications for research
Research is needed to determine the best way to deliver parent interventions, including the optimal dose, whether interventions should be delivered by trained professionals or paraprofessionals, and whether alternative modes of intervention delivery such as through eHealth or mHealth technologies impacts treatment feasibility and efficacy in clinical settings. At present, it is unknown whether parent interventions delivered alone or in combination with child and/or family/systems treatments are more efficacious. For example, there are some psychotherapy types that are typically delivered only to parents (e.g. PST) whereas other therapy types are delivered to parents and children (e.g. CBT). Research designs that allow for testing of child only, parent only, and parent/child/family interventions will advance this field. Further research to understand how to maximize the effects of parent interventions singly or in combination with specific child interventions is needed.
Given the small sample sizes of many studies in this field, we encourage multi‐site investigations to obtain larger samples. Moreover, considerations in research designs are needed for maximizing retention of parents and families in studies through to follow‐up assessment points.
At present, there is limited understanding of moderators or mediators of parent interventions. Studies should incorporate consideration of baseline patient, parent or family characteristics that may moderate the effects of treatment and be adequately powered to test these hypotheses. Further, the plausible treatment mechanisms for parent interventions need to be further conceptualized and studied in studies. Measurement of possible mechanisms should occur prior to outcome assessment (such as mid‐treatment) in order to test mediation pathways.
We found that multiple measurement tools were often used to evaluate one outcome domain in a single study. This practice was particularly problematic for studies that did not identify a‐priori the primary outcome. A posteriori selection of outcome measures is a problem and can increase bias. To address this concern, we recommend that editorial boards implement standards for trial registration and reporting that includes a‐priori decisions regarding outcome measurement.
In addition, there was heterogeneity in the measures used to evaluate most of the outcome domains across studies. Work is needed to establish consensus within the field for recommended or appropriate measurement tools to evaluate a given outcome within and across illness groups. Given the inherent challenges in establishing consensus across illness groups, researchers may consider using a combination of disease‐specific measures to enhance sensitivity as well as general measures to enhance generalizability.
Finally, we were surprised by the number of studies that did not assess parent or family outcomes even though all of the interventions included in this review were developed to be delivered to parents or families. We recommend that future studies routinely assess parent and family outcomes when parents are directly targeted in treatment.
Since the first version of this review (which included only 13 studies), there has been a large increase in studies and interest in improving parental mental health and parenting behavior among families of children and adolescents with chronic illness. Studies identified in the updated search for this review had several strengths, including more routine use of CONSORT guidelines (Schulz 2010), and relatively larger sample sizes. The next generation of studies should take into account additional limitations identified in this review, including the following.
- Very few studies of FT, MI, and MST met the inclusion criteria for this review. Additional, larger studies of these therapies for children and adolescents with a broad range of illness conditions are needed.
- Replication studies for interventions that have been evaluated by only one research team, such as MST for families of children with diabetes and PST for families of children with TBI.
- There are several subpopulations that have been under‐represented in most studies, particularly those of low socioeconomic or minority status, as well as fathers. Research is needed to understand the efficacy of psychological therapies for these groups.
- Research is needed to understand the evidence‐base for studies that aim to intervene with mixed samples of youth with chronic illness. We may consider including these studies in a future version of this review.
- Research is needed to understand the feasibility and efficacy of these interventions in developing countries, particularly given predictions that the prevalence of childhood chronic illness will continue to increase worldwide (Liu 2015).
- In this updated search, we found more routine use of CONSORT reporting guidelines and trials registries compared to prior versions of this review. That being said, these practices were not universal across studies and this is an area that deserves attention from study authors and journal editors. Study authors are encouraged to report complete details about their intervention and how it was delivered, including making treatment manuals publicly available. Many journals now have policies requiring trial registry and use of CONSORT guidelines, and we encourage editors to enforce these policies.
- We had some trouble with incomplete reporting of data in published manuscripts. Complete data were available to extract from 25 of 44 studies included in this review. Additionally, authors of 16 studies provided data to us on request, which were missing from the published manuscripts. We rated these studies as having high risk of reporting bias, and our sensitivity analyses indicate that excluding these studies may have changed the findings of our meta‐analyses. We support the general move toward central registries for all study data and treatment manuals.
- Finally, piecemeal and repeat publication is an ongoing concern. There were several included studies identified from our updated search where multiple manuscripts were published from the same study. Such practices are unhelpful, create confusion and increase unnecessary labour (American Psychological Association 2011). Many journals now have policies regarding publication of multiple manuscripts from the same study, including a detailed description of previous publications from that study and a statement regarding the unique contribution of the present manuscript (e.g. Drotar 2010). Editors play a crucial role in enforcing these policies, and need to take a proactive approach to identifying such papers during the review process (Committee on Publication Ethics 2011; World Association of Medical Editors 2012).