Changes in Parental Hopes for Seriously Ill Children

Abstract

The specific hopes and overall areas of hope of parents of seriously ill children vary over time, although most hopes fall within 4 major areas. Accordingly, clinicians should regularly check with parents about their current hopes.

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

“…This attitude can be understood as a hope for ‘normal' daily life, with the caveat that Aaron has his own unique ‘formula' of normality—he will likely never attain the same level of bodily expression or motor skills as other healthy children. This attitude also includes hope for minimal pain as well as for professional care, both of which transform the meaning of the loss of hope for a cure (Granek et al, ; Hill et al, , ). Aaron's mother always has a hope for her son's recovery, treating his ‘formula' as a unique, personal measurement of his health.…”

“…She does not mention the experience of chaos, describing instead her attempts to regain control after each ‘down' event. It should be mentioned that the adaptation processes for parents of seriously ill children are still being studied within the context of hope (Cullen, ; Hill et al, ; Van der Geest et al, ).…”

Palliative Care for Children with Central Nervous System Malignancies

“…Establishing goals first requires some determination of the patient’s and family’s values (herein, simply “the family”) and priorities; this is achieved across a series of conversations. Examples of common values and priorities include: Staying out of the hospital, controlling pain, spending time with loved ones, and achieving milestones, such as graduation [11,12]. These values are discussed in the context of the patient’s illness, treatment options, and prognosis to establish priorities and goals of care and to facilitate medical decision-making.…”

Bereaved Parents, Hope, and Realism

“…1,2 Parents describe hope as a life-sustaining factor, 2,3 one that impacts decision-making processes across their child's illness journey. 1,4 Recent data reveal parental hopes to be fluid, evolving across the illness trajectory 5,6 and persisting in the face of critical illness and at the end of life. 1,6,7 In the setting of serious pediatric illness, tension exists between sustaining hope and expressing prognostic understanding.…”

“…1,4 Recent data reveal parental hopes to be fluid, evolving across the illness trajectory 5,6 and persisting in the face of critical illness and at the end of life. 1,6,7 In the setting of serious pediatric illness, tension exists between sustaining hope and expressing prognostic understanding. 1 To capture this strain, the analogy of a swinging pendulum has been proposed to reflect the fluctuation between parents' persistent hope for a cure and awareness of a child's impending death.…”