A Family Perspective: How this Product can Inform and Empower Families of Youth with Spina Bifida

Family dynamics and psychosocial functioning in children with SCI/D from Colombia, South America

“…This theory posits that some aspects of family and parent functioning are disrupted in many families with SCI/D, but that these families also tend to demonstrate resilience across other adjustment domains. 22 The current findings indicate that families with SCI/D demonstrate resilience with regard to their cohesion, communication, satisfaction, flexibility, and empathy. When these factors are present, they tend to be associated with positive, resilient, responses from children (like decreased worry, increased emotional functioning, and decreased social anxiety).…”

“…20 Research findings support a 'disruption-resilience' view 21 of the impact of SCI/D on family functioning, such that some aspects of family and parent functioning are disrupted in many families, but such families also tend to demonstrate resilience across other adjustment domains. 22 More specifically, families with SCI/D may be less responsive to their child's developmental and maturational changes, 23 tend to score within the clinically problematic range on measures of family functioning, 14 exhibit lower family cohesion, lower mother-child agreement on measures of activity preference, and higher noise levels in the home environment than families of able-bodied children. 24 Further, these issues appear to be exacerbated by lower socioeconomic status of SCI/D families.…”

Parent Empowerment in Pediatric Healthcare Settings: A Systematic Review of Observational Studies

“…Care-Across studies, concepts related to increased involvement or engagement in daily care among empowered parents included enhanced parent belief in their own ability to gain needed skills [25] and achieving mastery of these skills [26]. Other studies suggested that empowerment increased parents engaging in daily care [16,19,27,28], tending to the child's safety needs [26], desiring increased involvement in treatment [20], and helping the child towards self-management [29].…”

“…Processes-Closely related to the parent-provider relationship, specific processes of care were often discussed as antecedents of empowerment. These included shared decision-making [26,40,23,43], developing shared goals [20,26,44], and familycentered care [29]. In contrast, processes leading to disempowerment included parent exclusion from decision-making [41,43,45,25] and discordant expectations and/or goals between parents and providers [26].…”

Depressive symptoms in parents of adolescents with myelomeningocele: The association of clinical, adolescent neuropsychological functioning, and family protective factors

“…Analysis of data from our larger study suggests that adolescents with MMC might not be participating in activities such as decision-making and peer interactions to such an extent as to facilitate a healthy transition into adulthood [67]. Moreover, the challenges faced by younger adolescents with MMC and their families may be different than those faced by older adolescents [68]. In addition, it would be important to determine if PDS differs in younger age groups.…”