A critical evaluation of the effectiveness of interventions for improving the well-being of caregivers of children with cerebral palsy: a systematic review protocol
Background
Provision of care to a child with a chronic/long-term health condition has been extensively demonstrated to negatively affect the health and health-related quality of life (HRQoL) of informal caregivers [1–3]. This is exacerbated if the child suffers from a complex neurodevelopmental condition such as cerebral palsy (CP) [2, 3]. Children with CP most often present with multiple functional problems and invariably require assistance in day-to-day activities such as feeding, bathing, among others [4]. Furthermore, children with CP require frequent medical care necessitating the caregivers to visit health institutions thus compounding the magnitude of the perceived burden of care [5]. Consequently, caregiving for a child with CP is often associated with anxiety [6–8], stress [9, 10], depression [8, 11–13], low self-efficacy [14], financial burden [15, 16], musculoskeletal pain [13, 17], poor physical health, and lower HRQoL in informal caregivers [3, 18]. It is also known that the functional limitations of the children become more apparent as the child grows older, increasing the magnitude of caregiver burden with the passage of time [1, 3, 5, 18].
Over the past few decades, there has been a paradigm shift in the provision of rehabilitation services with the family-centered approach evolving as the “gold standard” model of service delivery [19, 20]. There is now a stronger emphasis to provide support services for caregivers in addition to meeting the functional needs of children with CP [19, 21]. This is justified because there is evidence that poor caregiver health is associated with poorer functional outcomes in children with CP [3, 22]. For optimal rehabilitation outcomes to be achieved, the caregiver is expected to be compliant with attendance to appointment schedules and with instructions regarding facilitation to improve functioning by expediently implementing the prescribed home exercise program [23]. This is important as the neuroplasticity theory emphasizes the importance of constant practice of functional activities in children with CP (after suffering from brain injury), to improve function [24], hence, the need for continued care at home by the caregivers after the hospital-based therapy sessions for optimal functional outcomes. On the same wavelength, economic evaluations in the USA alone have pegged services of informal caregivers at around $450 billion in 2011 [25]. This undoubtedly demonstrates that informal caregivers are a vital human resource in the management of patients with long-term health conditions [21, 26, 27].
To this end, there have been attempts to develop supportive interventions aimed at increasing caregiver well-being for moral, ethical, and economic reasons [1, 3, 25]. The most commonly cited interventions include educational strategies, e.g., caregivers’ training workshops, and psychosocial strategies such as counselling, support groups, cognitive behavioral techniques, and respite care, among others [28–31]. Felicity et al. [28] performed a randomized controlled trial (RCT) in Australia to determine the impact of a family behavioral interventions such as the acceptance and commitment therapy on the well-being of caregivers of children with traumatic brain injury (N?=?59). The results indicated that family behavioral interventions may lead to improvements in caregivers’ self-efficacy, confidence, family adjustment, and psychosocial well-being. Moreover, support groups have been demonstrated to lead to decreases in parental stress, increased psychosocial well-being in domains such as hope, happiness, and self-esteem in Hong Kong caregivers of children with CP [30].
In another study, 26 Indian caregivers of newly diagnosed children with CP were exposed to an educational program aimed at increasing parental knowledge of CP [29]. The results revealed that even a single session is enough to increase caregivers’ knowledge. Additionally, the authors postulated that knowledgeable caregivers were most likely to adjust to the demands of caregiving [29]. This is further substantiated by findings from a study on 53 Indian caregivers of children with CP. In the aforementioned study, caregivers’ level of knowledge of CP was improved after they were exposed to an educational film [31].
However, there is no collective empirical evidence to determine the efficacy of these interventions in improving caregivers’ well-being. Additionally, given the heterogeneity of methodologies applied, it is thus important to systematically evaluate the impact of these interventions on caregivers’ well-being. Above all, there is an urgent need for evidence-based practice in implementing supportive interventions for caregivers of children with long-term disabilities.