Psychosocial impact of caring for children with cerebral palsy on the family in a developing country

Abstract

Having a child with cerebral palsy (CP) in developing countries of the world is particularly burdensome. This study investigated psychosocial impact on the family caring for a child with CP, examined possible association of severity of gross motor function impairment on the psychosocial impact and compared impact scores of families with CP child with that of families with no CP child. Participants consisted of 117 parents/caregivers of children with CP and 117 parents/caregivers of children without CP whose children attended purposively selected secondary and tertiary health institutions in South-West region of Nigeria. Impact on family (IOF) scale was used to assess psychosocial impact while gross motor function classification system for CP was used to rate severity of motor function impairment in children with CP. Participants were mostly of low income 59 (25.2%) and middle income 85 (36.3%) categories. Children were mostly in the 1?3 year age range 116 (49.6%). Birth asphyxia was most reported cause of CP and no social support service was reported. Significantly higher mean subscale and total IOF scores were observed in families with CP child (37.4 ? 8.91) compared with families with no CP child (20.8 ? 4.98) P = 0.000. Significant differences did not exist in mean total IOF scores and severity of motor function impairment in children with CP (P = 0.16). Presence of a child with CP imposes tremendous psychosocial challenges on the family irrespective of severity of motor function impairment. Implementation of an effective and accessible social support system by Nigerian policy makers is imperative.

Working Therapeutically with Parents after the Diagnosis of a Child's Cerebral Palsy: Issues and Practice Guidelines

“…Levels of parental stress were associated with a child's level of gross motor function capacity (Davis et al, 2009; Palisano et al, 2009; Schuengel et al, 2009; Sipal et al, 2009; Fiss et al, 2013), whether or not the child had an intellectual disability (Buran et al, 2008; Palisano et al, 2009; Vargus-Adams, 2011; Pfeifer et al, 2013), the level of communication impairment (Buran et al, 2008; Almassri et al, 2011; Vargus-Adams, 2011), and the level of physical pain associated with the CP diagnosis (Sipal et al, 2009; Vargus-Adams, 2011). Interestingly, research by Davis and colleagues (2009) and later in studies by Ogwumike, Adeniyi and Obidiegwu (2012), Fiss et al (2013) and Pfeifer et al (2013) found that parents of children diagnosed with CP experience a significant increase in levels of psychological distress that was not influenced by the level of gross motor function capacity of the child. However, five of the studies showed that families who have a child with a more severe diagnosis will require more assistance with home modifications (Palisano et al, 2009; Bourke-Taylor, Cotter & Stephan, 2013), transportation (Almassri et al, 2011; Bourke-Taylor et al, 2013)), financial assistance (Buran et al, 2008; Davis et al, 2009; Almassri et al, 2011), and access to services and recreational activities for their child (Buran et al, 2008, Almassri et al, 2011; Bourke-Taylor et al, 2013).…”

Effect of family-centered care interventions on well-being of caregivers of children with cerebral palsy: a systematic review

“…12,13 Parents nurturing a child with CP often experience isolation, anxiety, and depression. 14,15 Therefore, meeting the informational, resources, emotional, social, and monetary needs of the caregiver would be crucial to reduce their burden. 16,17 Moreover, since children with CP require long-term multidisciplinary care, providing a continuum of care through a family-centered approach may be able to reduce the caregiver burden, enhance their capacities and empower them to care for their children.…”