Review of parental activation interventions for parents of children with special health care needs

Abstract

There is a need to boost active ingredients of interventions that specifically target enhancing parent skill sets relevant to areas of self-efficacy, confidence, and empowerment. Future studies must also adapt intervention and study design to recruit socioeconomically vulnerable families.

How can educational support for parents in the care of children with life-limiting illnesses be successful? An empirically-founded and theory-based concept development / Wie kann edukative Begleitung von Eltern in der Versorgung lebenslimitierend erkrankter Kinder gelingen? Eine empirischfundierte und theoriegeleitete Konzeptentwicklung

“…In den meisten Studien, die Auswirkungen edukativer Interventionen auf elterliche Selbstwirksamkeit bei verschiedenen Zielgruppen untersuchten, konnten Gruppeninterventionen über längere Zeit die elterliche Selbstwirksamkeit im Umgang mit ihrem gesunden oder kranken Kind erhöhen (Barlow et al, 2014;Dellve et al, 2006;Wittkowski et al, 2016;Enebrink et al, 2015;Kieckhefer et al, 2014;Mirza et al, 2018;Willis et al, 2014…”

“…Beispielsweise erhöhen Gruppeninterventionen mit kurzfristigen Folgetreffen über mehrere Wochen signifikant die Selbstwirksamkeit im Umgang mit dem Neugeborenen (Barlow, Smailagic, Huband, Roloff & Bennett, 2014;Ingram et al, 2016;Wittkowski et al, 2016). Eltern von Kindern mit chronischen oder seltenen Erkrankungen zeigten eine höhere Selbstwirksamkeit im Umgang mit der kindlichen Erkrankung, wenn sie an Gruppeninterventionen teilnahmen (Dellve, Samuelsson, Tallborn, Fasth & Hallberg, 2006;Kieckhefer et al, 2014;Mirza, Krischer, Stolley, Magana & Martin, 2018). Neben gruppenbasierten Bildungsprogrammen erhöhen auch Einzelangebote die Selbstwirksamkeit bspw.…”

Characteristics of Future Models of Integrated Outpatient Care

“…Engaging the patient and her family can also be enhanced with assistance navigating service systems [24]. Programs that do this, appear to improve coping and increase the use of community-based services and resources.…”

“…What is needed to engage patients and their families appears to be influenced, in part, by the needs posed by the medical condition. For example, the difficulties some parents experience in “navigating service systems, finding information about their child’s condition, and accessing health care and community resources” can be minimized by having “interventions that “activate” parents of children with special health care needs to increase their knowledge, skills, and confidence in managing, coordinating, and advocating for their child’s needs” [24].…”

Pilot Randomized Trial of a Family Management Efficacy Intervention for Caregivers of African American Adolescents with Disruptive Behaviors

“…The FAME intervention, which aims to increase caregivers' knowledge, confidence, and ability to manage their child's health or chronic illness, is consistent with the concept of caregiver activation (Hibbard, Stockard, Mahoney, & Tusler, 2004;Ruble, Murray, McGrew, Brevoort, & Wong, 2018), an emerging area of research related to caregiving in children's mental health (Mirza, 2018). We did not address or measure caregiver activation in the current trial but will do so as we further develop the intervention.…”