A Metasynthesis: Uncovering What Is Known About the Experiences of Families With Children Who Have Life-limiting and Life-threatening Illnesses

Parental experience of hope in pediatric palliative care: Critical reflections on an exemplar of parents of a child with trisomy 18

“…Aaron's mother always has a hope for her son's recovery, treating his ‘formula' as a unique, personal measurement of his health. She has evidently rearranged her role as a parent to accommodate her son's possible death (Bally et al, ; Lou, Mou, Wong, & Mao, ; Rallison & Raffin‐Bouchal, ), albeit while maintaining a state of hopefulness toward her child (Ångström‐Brännström, Norberg, Standberg, Söderberg, & Dahlqvist, ; Bally et al, ; Sisk, Kang, & Mack, ).…”

“…Hope incites people to action and prevents them from passivity' (p. 573). In another metasynthesis study of qualitative research exploring parents' psychological and social experiences during the complex and traumatic life transitions associated with caring for a child with a life‐limiting or life‐threatening illness, the specific benefits of proper communication focused on maintaining parental hope are described by Bally et al () as such: ‘With such knowledge, healthcare providers can better assess parents' experiences and support them by creating supportive environments and considering those factors that make hope easier, such as social support, spirituality, positivity, and focusing on positive aspects on their child's health' (p. 97).…”

Uncertainty, hope, and coping efficacy among mothers of children with Duchenne/Becker muscular dystrophy

“…The persistent uncertainty described by parents of children with chronic and life‐limiting medical conditions has been linked to several significant negative and positive outcomes for parents and families. Research has found that uncertainty can negatively affect parental coping and adaptation; and increase feelings of psychological distress, anxiety, depression, and hopelessness . Alternatively, parents have reported benefits to uncertainty, including recognizing that uncertainty allows for the possibility for positive outcomes for their child .…”

“…Research has found that uncertainty can negatively affect parental coping and adaptation [6][7][8] ; and increase feelings of psychological distress, anxiety, depression, and hopelessness. [9][10][11] Alternatively, parents have reported benefits to uncertainty, including recognizing that uncertainty allows for the possibility for positive outcomes for their child. 6,9,11,12 This dichotomization of uncertainty appraisals is further elucidated by Mishel's Uncertainty in Illness Theory.…”

How Japanese nurses participate in decision making: Infants with congenital life‐threatening conditions

“…Studies have shown that parents develop trust when health care providers seemed to have the best interests of the infant in mind (Rosenthal & Nolan, ). Other have found that the emotional state of families starts with the “devastation of living with uncertainty” and may change to the “emergence of hope.” This latter state includes shifting from hoping for a cure to hope for good quality of life (Bally et al, ). Health care providers in NICUs can have a positive influence on the emotional state of parents by creating bonds of trust, and a supportive environment.…”