Parents' experiences of living with a child with a long‐term condition: a rapid structured review of the literature

Abstract

Background Living with a child with a long-term condition can result in challenges above usual parenting because of illnessspecific demands. A critical evaluation of research exploring parents' experiences of living with a child with a long-term condition is timely because international health policy advocates that patients with long-term conditions become active collaborators in care decisions.

Involving Parents in Managing Their Child's Long-Term Condition—A Concept Synthesis of Family-Centered Care and Partnership-in-Care

“…Actively involving parents in care decisions, and children and young people as appropriate, is particularly salient in the context of long-term conditions where the day-to-day management of care becomes primarily the responsibility of the family. Evidence suggests that care-giving such as providing medical and nursing interventions above usual parenting tasks is a significant feature of living with a child with a long-term condition for both fathers and mothers (Cashin, Small & Solberg, 2008;Smith, Cheater & Bekker, 2013a;Wennick & Hallström, 2007). In order to manage their child's condition, parents need to; gain knowledge of the condition and treatments (Bailing & McCubin 2001;Knafl, Deatrick, Knafl, Gallo, et al, 2013, Nuutila & Salanterä, 2006; learn how to identify and respond to illness symptoms in their child (Smith, Cheater, Bekker & Chatwin, 2013b;Wennick & Hallström, 2007); and develop effective relationships with health professionals (Dickinson, Smythe, & Spence, 2006;Swallow & Jacoby, 2001;Swallow, Lambert, Santacroce, Macfadyen, 2011;Swallow, Macfadyen, Santacroce & Lambert, 2012).…”

An Exploration of the Concepts of Loss and Grief as Stress Responses in Middle Eastern Parents of Children with Cancer

“…Kubler-Ross believed that these steps may not necessarily come in the above order and that there is a possibility that affected individuals may not experience all five stages. A review of 34 studies conducted by Smith et al (2013) focused on parental experiences when having a child diagnosed with a long-term medical condition found that parents experienced several emotions such as shock, disbelief and anxiety of having a child diagnosed with a chronic illness. These grief reactions often disappeared if parents accepted the reality otherwise parents may refuse to believe their child's situation.…”

“…These grief reactions often disappeared if parents accepted the reality otherwise parents may refuse to believe their child's situation. Therefore, parents expressed various emotional reactions such as anger, blame and/or guilt (Smith et al, 2013). The grief and loss paradigm assumed that parents undergo (i.e.…”

Modelos de cuidado às famílias de crianças dependentes de tecnologia em contexto hospitalar [Models of care for families of technology-dependent children in a hospital context]

“…Os pais experimentam uma gama de emoções, precisando incorporar saberes e práticas desconhecidas em seu cotidiano, e enfrentam cuidados desafiadores para o atendimento das atividades diárias de seu filho. O ambiente domiciliar passa por adaptações com presença de novos equipamentos para a sobrevida dessa criança, que se somam aos brinquedos e pertences, cujo valor é inestimável para o seu desenvolvimento 8,23 .…”