Parent-mediated interventions

Parent-mediated interventions, as outlined by Conrad et al,1 are therapeutic approaches wherein healthcare practitioners use coaching and education to enable parents to support their child’s development through the acquisition of necessary skills, knowledge and strategies aiming to improve parent and child outcomes. The delivery of these interventions involves healthcare practitioners or organisations educating and coaching parents to enhance the development of their child who has a disability by implementing interventions in the home environment.2 3 Parent-mediated interventions are delivered through either telehealth and/or online forums, or directly through face-to-face consults with healthcare practitioners.4

Parent-mediated interventions are effective for a range of children and families with contextual variations. These interventions are unique and advantageous as they bring the child’s treatment into a familiar setting which in turn eases the transference of skills from the clinical setting into the home environment.1 A study conducted by Manohar et al 5 in South India found that parent-mediated interventions were well received, feasible and had a positive impact on reducing parental stress while enhancing the sociocommunicative skills of children with autism spectrum disorder (ASD). Systematic reviews completed by Althoff et al 6 and Conrad et al 1 found that parent-mediated interventions were effective in improving parental and child skills such as adaptive functioning, disruptive behaviour and occupational performance for children with various neurodevelopmental disorders such as ASD and attention deficit hyperactivity disorder (ADHD). Swanson7 noted that parent-mediated interventions were effective in improving object exploration in infants with Down’s syndrome. Koly et al’s8 systematic review found that parent-mediated interventions were effective in improving parent–child interactions, child social and communication skills, learning ability and academic performance and parental knowledge when implemented with children with neurodevelopmental disorders in South Asia. Furthermore, Rooks-Ellis et al’s9 feasibility study found that parent-mediated interventions were easily implementable for parents and had a positive impact on children’s ASD symptomology when delivered through telehealth to rural families in North America. Parent-mediated interventions are a feasible and effective intervention when properly designed, implemented and evaluated6 10 11 and have been noted to have promising potential as an intervention in low-resource settings.12 These interventions have the potential to support parents of children with neurodevelopmental disorders living in rural areas by providing access to necessary early intervention. However, there is little exploration and no current consensus on the characteristics of effective parent-mediated interventions for parents of children with neurodevelopmental disorders living in rural areas. The outcomes of this systematic review can contribute to the effective implementation of parent-mediated interventions that account for specific cultural, geographical, social and demographic factors associated with rural areas.

As these interventions are a relatively new form of treatment the development and trial of these interventions with varying populations is required to identify their acceptability and effectiveness. This is evidenced by the systematic review conducted by Law et al 13 that found parent-mediated interventions did not reduce the risk of ASD diagnosis when provided as an early intervention for children under 24 months of age at risk of neurodevelopmental disorder.13

Children with neurodevelopmental disorders

Neurodevelopmental disorders are defined in the Diagnostic and Statistical Manual of Mental Disorders, fifth Edition14 as a spectrum of conditions characterised by developmental delays, which manifest as impairments in personal, social, physical, occupational and academic function with onset during the primary developmental period.14 Neurodevelopmental disorders are often identified by family and healthcare professionals when children are not meeting their developmental milestones across five domains: gross motor, fine motor, language, cognition and socialemotional and behavioural skills.15

Neurodevelopmental disorders, such as ASD, ADHD, epilepsy, intellectual disability, developmental disability and cerebral palsy, are among the most prevalent paediatric disabilities.16 17 ASD and ADHD are the most common18 19 with 1 in 100 children globally estimated to be diagnosed with ASD20 and ADHD having a global prevalence of 7.6% in children aged 3–12 and 5.6% in those aged 12–18.21 Cerebral palsy is the most common cause of paediatric motor disability.22 The global prevalence of paediatric neurodevelopmental disorders as a group is unknown with prevalence fluctuating globally depending on sociocontextual factors, diagnostic criteria and estimation procedures.18 Risk factors of neurodevelopmental disorders include genetics,23 preterm infants24 and environmental factors such as economic vulnerability and access to healthcare services.25 There is no significant difference in the prevalence of neurodevelopmental disorders among urban and rural populations despite the population sizes being vastly different.26 The high prevalence of neurodevelopmental disorders in rural locations can be directly linked to psychosocial factors associated with these regions that impact health equity such as low socioeconomic status, lack of infrastructure and social deprivation.27

Families living in rural areas

The terms rural, remote and regional refer to geography, encompassing all areas outside of major cities.28 For ease of understanding in this review, the term rural will be used to refer to regional, rural and remote areas. These areas are characterised by features such as low population density; however, recently, there has been increased emphasis on social characteristics such as a strong sense of community and connection to natural features defining these regions.29 Rural regions have been traditionally perceived as homogeneous communities with low cultural diversity. However, this has altered dramatically in recent decades with these communities now being recognised as culturally diverse.30 31

Rural people experience unique barriers associated with isolated geographical location, poor policy development and implementations that neglect their unique populations, for instance, the high proportions of First Nations communities in these areas, resulting in impacted health outcomes, reduced education level and employment opportunities and lower average income.28 The cultural landscape of rural communities includes distinct social groups such as farmers and First Nations Peoples that require a distinctive approach to healthcare provision to ensure effectiveness. Due to the diverse characteristics of rural communities, parent-mediated interventions need to be tailored to the target population to increase the likelihood of success. Rural communities, experience significant barriers to effective, comprehensive healthcare resulting in disparities in health and well-being between rural and urban populations in most developed countries.32 A key factor influencing these ongoing inequalities is the lack of primary healthcare research focusing on rural populations, a concept discussed extensively in existing literature.33–35 The necessity of expanding the evidence base of primary healthcare for rural populations further demonstrates the need for this systematic review.

Families living rurally raising a child with a neurodevelopmental disorder demonstrate intersectional disadvantage.36 Intersectional disadvantage refers to individuals or communities experiencing two or more different demographic categories of disadvantage, such as rurality and disability, and the way in which the intersection of these disadvantages contributes to the overall negative impact on the population. These communities experience significant barriers to access, coordination and navigation of healthcare services, along with limited infrastructure and increased distance.37 38 These barriers reduce the accessibility of direct healthcare provision and ongoing specialist interventions provided by allied and other health professionals,39 interventions that are recommended as part of best practice for children with neurodevelopmental disorders.40 Due to the reduced access to health services rural populations may benefit from well-designed effective parent-mediated interventions to enhance healthcare networks and services.

From general to specific parent-mediated intervention characteristics: a research gap

Parent-mediated interventions have been more frequently implemented over the last 10 years, particularly since the COVID-19 pandemic.41 The increased implementation of parent-mediated interventions has led to extensive analysis regarding their effectiveness.2 11 42 43 Despite the extensive research published on parent-mediated interventions there does not appear to be a consensus on what characterises an effective parent-mediated intervention for parents of children with neurodevelopmental disorders in rural areas, exploring the interplay of the intervention characteristics such as mode of delivery, duration, intensity and primary aim and population demographics, cultural and social factors.44–47

The analysis of the characteristics of an effective parent-mediated intervention for children with neurodevelopmental disorders over the past 10 years is the focus of this systematic review. A pilot study analysing the effectiveness of parent-mediated interventions for children with neurodevelopmental disorders recommended the generalisation of parent-mediated/carer-mediated interventions as they were proven to be effective for both children and caregivers in the homogeneous urban sample in which they were analysed.48 This recommendation for the generalisation of a mode of healthcare intervention for all populations following analysis with a homogeneous urban sample is problematic as there are population demographics, social and cultural factors associated with specific populations that require consideration for effective intervention implementation. These include factors such as education level, language, socioeconomic status, and cultural and religious beliefs that may vary depending on geographical location. The impact of population characteristics on the effectiveness of a parent-mediated intervention is explored by Trembath et al 47 who noted factors such as parental education levels, language and cultural norms impact the broad generalisability of parent-mediated interventions, highlighting the necessity of parent-mediated interventions being specific to the community in which they are being implemented. This is further supported in a randomised clinical trial conducted by Roberts et al 49 who identified the necessity of the individualisation of parent-mediated interventions so that the characteristics of the intervention match population contextual factors, to ensure effectiveness, as treatment effect is susceptible to the factors mentioned above.

Parsons et al 46 noted that there was a need for exploration of the characteristics of effective parent-mediated interventions for specific populations and Kuravackel et al 45 discussed the need for evidence-based interventions for rural populations that are effective and culturally responsive. Furthermore, Trembath et al 47 noted that further research is needed to identify for whom parent-mediated interventions work best and why, considering the interplay of parent-mediated intervention characteristics and participant contextual factors.