The voices of Young New Zealanders Involved in Pediatric Palliative Care

Abstract

The perspectives of young New Zealanders receiving pediatric palliative care (PPC) are not well understood. A qualitative study of the perceptions of 16 PPC patients and their siblings, aged 9 to 18, was conducted through audio and written diary accounts. Inductive thematic analysis revealed several concerns of participants, including special treatment that patients had received, spending time with their families, their feelings of being judged or discriminated against, their sense of being understood themselves and of understanding others, and mortality. A nonjudgemental, open approach is recommended when consulting with patients and their siblings in order to determine their needs.

Researching children's perspectives in pediatric palliative care: A systematic review and meta-summary of qualitative research

“…The relationship between pediatric patients and their families was mentioned in six qualitative studies (Borghi et al, 2014; Flavelle, 2011; Gaab et al, 2013; Hinds et al, 2005; Kortesluoma et al, 2008; Kortesluoma & Nikkonen, 2006). The relationship with the family is interlinked with the relationship with healthcare professionals and peers (Kortesluoma et al, 2008).…”

“…The relationship with the family is interlinked with the relationship with healthcare professionals and peers (Kortesluoma et al, 2008). Children describe their family as the primary source of support (Borghi et al, 2014; Gaab et al, 2013; Hinds et al, 2005). Studies (Flavelle, 2011; Gaab et al, 2013; Kortesluoma & Nikkonen, 2006) have found that the diagnosis affects the relationships among family members.…”

“…Children describe their family as the primary source of support (Borghi et al, 2014; Gaab et al, 2013; Hinds et al, 2005). Studies (Flavelle, 2011; Gaab et al, 2013; Kortesluoma & Nikkonen, 2006) have found that the diagnosis affects the relationships among family members. Children often note that their feelings have changed from before the diagnosis (Gaab et al, 2013; Hinds et al, 2005).…”

“…Studies (Flavelle, 2011; Gaab et al, 2013; Kortesluoma & Nikkonen, 2006) have found that the diagnosis affects the relationships among family members. Children often note that their feelings have changed from before the diagnosis (Gaab et al, 2013; Hinds et al, 2005). On the one hand, the clinical situation makes them feel closer to their parents, whereas, on the other hand, it augments children's dependency on family members (Flavelle, 2011; Gaab et al, 2013).…”

The under reporting of recruitment strategies in research with children with life-threatening illnesses: A systematic review

“…Barriers to obtaining consent included overcoming participants’ attitudes or preconceptions towards research (‘Some parents felt that their son/daughter would be unable to participate as they were either non-verbal or had severe learning disabilities’ 30 ), logistical factors and CYP characteristics (‘Symptoms such as fatigue can keep children in critical condition from participating in research’ 31 )…”