Interventions to support parents of infants at risk or with a diagnosis of neurodevelopmental disability

December 22, 2020

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MANUSCRIPT CITATION: 

Dickinson, C, Whittingham, K, Sheffield J, Wotherspoon J, Boyd, R. Efficacy of interventions to improve psychological adjustment for parents of infants with or at risk of neurodevelopmental disability: A systematic review. Infant Ment Health J 2020; 1-26. https://doi.org/10.1002/imhj.21871. PMID: 32583882

REVIEWED BY

Francyne Finlayson, BPhysio
Doctor of Philosophy candidate
The University of Melbourne

Dr Joy Olsen, PhD
Occupational Therapist
The Royal Women’s Hospital

Associate Professor Louisa Remedios, PhD
Associate Professor of Physiotherapy
The University of Melbourne

Professor Alicia Spittle, PhD
Professor of Physiotherapy
The University of Melbourne

TYPE OF INVESTIGATION

Prevention

QUESTION

For (P) parents of infants diagnosed with or at risk of neurodevelopmental disability, the effect of (I) psychological interventions was compared with (C) usual care, on (O) parent psychological adjustment and well-being at longer-term follow-up (6 months to 8 years) post-interventions.

METHODS

  • Design: systematic review
  • Allocation: N/A
  • Blinding: participants were not blinded for the majority of studies; therapists delivering interventions were not blinded for all studies; unclear if assessors were blinded for outcome assessments.
  • Follow-up period: 6 months to 8 years post-intervention.
  • Setting: all studies were conducted in a hospital setting, with the majority commencing in the Neonatal Intensive Care Unit (NICU) and half continuing to home.
  • Patients: infants at risk of neurodevelopmental disability, including preterm birth, low birth weight, hypoxic ischemic encephalopathy or congenital heart defects.
    • Inclusion criteria: quasi or randomised controlled trial (RCT) involving parents of infants (<2 years old) with or at risk of neurodevelopment disability, where the intervention commenced in infancy and was focused on cognitive or behavioral processes aimed to improve parental psychological adjustment or well-being and standardized measures of adjustment or well-being were used to measure outcomes.
    • Exclusion criteria: interventions that were not targeted towards the parent, or not framed in psychotherapeutic strategies, or focused only on infant strategies and/or outcomes.
  • Intervention: parent focused intervention delivered by a health professional in the NICU or home setting.
  • Outcomes:
    • Primary outcome: parent outcomes of depression (e.g. Edinburgh Postnatal Depression Scale), anxiety (e.g. State-Trait Anxiety Inventory), stress (e.g. Perceived Stress Scale), and trauma (e.g. Perinatal Post-traumatic Stress Disorder Questionnaire)
    • Secondary outcomes: general psychiatric screening and health status of parents, infant developmental outcomes, infant salivary cortisol and infant social adjustment.
  • Analysis: Cohen’s d was used to define intervention effect size, where 0.2 was considered small, 0.5 moderate and 0.8 large, with a random effects model used to acount for study heterogeneity.
    • Meta-analyses were performed, with domains separated into depression, trauma, anxiety and stress.
    • Qualitative analysis was scored using the PEDro scale (Physiotherapy Evidence Database).
  • Patient follow-up: varied across studies; percentages not reported in the study.

MAIN RESULTS

Sixteen articles with twelve separate studies were included, comprising of eight RCTs and four quasi-RCTs aimed at improving psychological adjustment of parents of infants diagnosed with or at risk of neurodevelopmental disability. Sample size varied from 50 to 199 parents.

The methodological quality of included studies was moderate, scoring an average of 7 on the PEDro scale (range 4 to 9). Eight studies were of a high quality, (PEDro scale greater than or equal to 6), and were included in meta-analyses.

Participant characteristics: a total of 1,159 parents (majority mothers, some fathers included), with 599 in the experimental groups and 560 in the control groups included. The mean range of parental age was 26 to 34 years. Three studies included fathers, with fathers representing 12.8% of the combined study population. The majority of studies commenced around 28 to 30 weeks’ GA, with a mean age range of 27 weeks’ GA to 10 week’s post-term. Ten of the twelve studies only included infants born preterm and/or low birth weight, with the other two studies also including infants with congenital heart defects and/or hypoxic ischemic encephalopathy.

Interventions: interventions varied in duration (range 3 days to 12 months), and total dosage (range 0.6 to 22 hours) and theoretical approach (Table 1). No intervention framework appeared superior over another, although CBT was the most used approach. Interventions predominantly were delivered individually face-to-face, with one in a group setting and one self-directed.

Table 1. Type and intensity of interventions of included studies.

Type of intervention Number of studies Range of

intensity

Range of Dosage (minutes)
Cognitive behavioral therapy (CBT) 4 3 to 7 sessions, 45-120 minutes long, over 2 to 7 weeks 135-720
Trauma-focused CBT 1 6 x 45-55 minute sessions, over 3-4 weeks 270-330
Individualized coping support interventions 2 1 x initial session*; 2 x 5-15 minute sessions per week; 1 x 30-90 minute session per fortnight 40-120 (minimum approx.)
Attachment interventions 2 22 x 60 minute sessions over 18 months; 9 x 90-120 minute session over 12 months 810-1,320
Relaxation and cognitive skills intervention 1 5 x 90 minute session; follow-up calls*, for 3 months 450 (approx.)
Expressive writing intervention 1 1 x 15 minute session per day for 3 days 45
Anxiety reduction and infant sensitivity intervention 1 6 x 60-90 minute session 360-540
Emotional ventilation and infant development education therapy intervention 1 6 x 60-120 minute sessions 360-720

* non-specified time

Outcomes:

A small number of high-quality studies demonstrated moderate strength of effectiveness in reducing adverse parent psychological symptoms of trauma and stress. This reduction in trauma symptoms was maintained at longer-term follow-up. Of the high-quality trials, there was no significant immediate effect of intervention on depression or anxiety, however significant improvements of these symptoms were seen at longer-term follow-up (6 months to 8 years). High-quality studies were restricted to studies of preterm or low birth weight infants (Table 2).

Table 2. Key findings of each psychological adjustment domain and meta-analyses.

Psychological adjustment domain Number of studies Number of outcome measures Key findings Key findings of meta-analyses
Depression 9 4 Five studies found significant reduction in depression for the intervention group compared with controls, with moderate to large effect size Pooled effect was significant immediately post-intervention (standard mean difference [SMD] = 0.48, 95% confidence interval [CI] 0.09 to 0.86, p = 0.01)

When removing the low-quality study, results were non-significant (SMD = 0.38, 95% CI = -0.08 to 0.83, p = 0.10)

Of the five studies with longer-term follow-up, pooled effect was significant at the end time point (SMD = 0.39, 95% CI = 0.05 to 0.74, p = 0.03)

Trauma 6 3 Three interventions found significant reduction in trauma symptoms with moderate to large effect size Pooled difference was significant immediately post-intervention (SMD = 0.42, 95% CI = 0.18 to 0.65, p = 0.0005) and was retained when the one low-quality study was removed (SMD = 0.28, 95% CI = 0.07 to 0.50, p = 0.01)

Of the three high-quality studies with longer-term follow-up, the pooled effect was significant at the end time point (SMD = 0.34, 95% CI = 0.09 to 0.60, p = 0.008)

Anxiety 5 4 Two interventions showing a reduction in anxiety symptoms in the intervention group, with a moderate to large effect size Pooled difference was significant immediately post-intervention (SMD = 0.35, 95% CI = 0.02 to 0.68, p = 0.04)

Pooled difference of only high-quality studies found non-significant results (SMD = 0.39, 95% CI = -0.09 to 0.86, p = 0.11)

Of the three high-quality studies with longer-term follow-up, pooled effect was significant at the end time point (SMD = 0.41, 95% CI = 0.17 to 0.65, p = 0.001)

Stress 3 2 Two studies found reduced stress symptoms in the intervention group, with large effect size Pooled difference was significant immediately post-intervention (SMD = 0.83, 95% CI = 0.11 to 1.55, p = 0.02)

Pooled difference of only high-quality studies found non-significant results at longer term follow-up (SMD = 0.16, 95% CI = -0.39 to 0.72, p = 0.57)

CONCLUSION

There are a small number of high-quality trials demonstrating moderate strength of effectiveness of interventions to reduce adverse psychological symptoms of trauma and stress in the shorter-term, and depression and anxiety in the longer-term, for parents of infants with a diagnosis or risk of neurodevelopmental disability. However, the majority of the studies included in this review were of infants born preterm and/or low birth weight, so caution is required in interpreting these results for the broader population of high-risk infants. Further, given the variance in intervention dosage, framework, and method of delivery it is difficult to identify the most effective elements in designing early interventions for parents. Therefore, there is a gap in knowledge of how to best support parents in optimizing their psychological well-being and adjustment to a diagnosis, as well as interaction with their infant.

COMMENTARY

Parents of children with or at risk of neurodevelopmental disabilities experience varied challenges of psychological adjustment. Many studies report psychological distress, including guilt, helplessness, anxiety and depression whilst in the Neonatal Intensive Care Unit (NICU) [1] and often experience this time as traumatic and stressful [2]. Interventions to improve the pyschological adjustment and well-being of parents of these vulnerable infants are varied in framework, dosage and timing [3].

In their recent systematic review, Dickinson and colleagues examine the effect of interventions on psychological adjustment of parents of infants with a diagnosis or risk of neurodevelopmental disability compared with usual care [4]. This study is different to other reviews that have included only preterm infants, rather than broader neurodevelopmental impairments, or focused primarily on infant development [5], mother-infant attachment [6] or NICU-based [3] interventions.

Based on these papers, Dickinson and colleagues reported that a small number of high-quality studies demonstrated moderate strength of effectiveness in reducing parental psychological symptoms of trauma and stress, which was maintained at follow-up post-intervention (6 months to 8 years). Of the high-quality studies measuring depression and anxiety symptoms, there was no significant effects of interventions immediately post-intervention, however significant improvements in these symptoms were seen at longer-term follow-up, suggesting a delayed effect of interventions on parental psychological adjustment. This highlights the importance of having psychological and emotional support for parents of high-risk infants both during an admission to the NICU and on discharge home, along with longer-term follow-up.

High-quality studies were restricted to studies of preterm or low birth weight infants, highlighting a need for further studies in diverse high-risk infant populations. As a parent’s ability to cope and support their infants’ needs is highly influenced by their psychological and emotional state, most interventions commence in the NICU to help parental psychological adjustment from the beginning of their child’s journey [4].Similar to therapeutic interventions for infants with neurodevelopmental disabilities such as cerebral palsy [7], many intervention frameworks were explored in this review and no single approach appeared superior over another. This draws attention to the heterogeneity of therapy approaches in this area and the potential for future research to validate one approach over the others. Few included studies focused on both  infant and parent outcomes, with only 33% also measuring infant or parent-infant relationship outcomes [4]. Future studies may investigate both infant and parent outcomes to more holistically capture the entire family unit.

Major strengths of this study were the systematic search strategy and clinically relevant interventions and outcomes. While some included studies had poor methodological quality, these were removed from meta-analyses to establish pooled effect of high-quality studies only. This review, whilst comprehensive, is limited by the research to date which is primarily focused on infants born preterm or low birth weight. Therefore, further research should explore parental psychological adjustment and well-being in wider neurodevelopmental disabilities. This knowledge is important to health professionals as parental mental health in adjusting to their infant’s medical needs is crucial in the care provided to these infants.

REFERENCES

  1. Meyer EC, Garcia Coll CT, Seifer R, Ramos A, Kilis E, Oh W. Psychological distress in mothers of preterm infants. Journal of Developmental and Behavioral Pediatrics. 1995;16:412-17.
  2. Shaw RJ, Bernard RS, Deblois T, Ikuta LM, Ginzburg K, Koopman C. The relationship between acute stress disorder and posttraumatic stress disorder in the neonatal intensive care unit. Psychosomatics. 2009;50:131-7.
  3. Benzies KM, Magill-Evans JE, Hayden KA, Ballantyne M. Key components of early intervention programs for preterm infants and their parents: a systematic review and meta-analysis. BMC Pregnancy and Childbirth. 2013;13:S10.
  4. Dickinson C, Whittingham K, Sheffield J, Wotherspoon J, Boyd RN. Efficacy of interventions to improve psychological adjustment for parents of infants with or at risk of neurodevelopmental disability: A systematic review. Infant mental health journal. 2020:1-26.
  5. Vanderveen JA, Bassler D, Robertson CM, Kirpalani H. Early interventions involving parents to improve neurodevelopmental outcomes of premature infants: a meta-analysis. J Perinatol. 2009;29:343-51.
  6. Evans T, Whittingham K, Sanders M, Colditz P, Boyd RN. Are parenting interventions effective in improving the relationship between mothers and their preterm infants? Infant Behavior and Development. 2014;37:131-54.
  7. Novak I, Mcintyre S, Morgan C, Campbell L, Dark L, Morton N, et al. A systematic review of interventions for children with cerebral palsy: state of the evidence. Dev Med Child Neurol. 2013;55:885-910.

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