Psychological therapies for parents of children and adolescents with a longstanding or life-threatening physical illness

Bottom line

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.

Background

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.

Key results

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.

Authors' conclusions: 

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.

Read the full abstract...
Background: 

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.

Objectives: 

To evaluate the efficacy and adverse events of psychological therapies for parents of children and adolescents with a chronic illness.

Search strategy: 

We searched CENTRAL, MEDLINE, Embase, PsycINFO, and trials registries for studies published up to July 2018.

Selection criteria: 

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.

Main results: 

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.

Adverse events

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.