The power of their voices: assessing the child and family

Abstract

In this chapter we shall examine the assessment of the child and family using a two-tiered approach. First, we shall examine the necessary fundamentals of assessment and identify how various concepts apply through case discussion. We shall then review and integrate data from a large-scale study of needs assessment of bereaved families that identified critical components of assessment and quality care.

The needs of siblings of children with a life-threatening illness, part 1: Conceptualization and development of a measure

“…Usually, the primary environments considered in needs assessment initiatives for adolescents are family and clinical settings (hospitals). The original contribution from this study now allows for a systemic analysis, considering siblings' needs over a broader perspective (Wood, 2006; Contro & Scofield, 2006; 2012). These results are consistent with certain needs that have already been identified by researchers or clinicians in serious pediatric illness environments (Ballard, 2004; Contro & Scofield, 2006; Gaab et al, 2013; Nolbris & Ahlstrom, 2014).…”

“…The original contribution from this study now allows for a systemic analysis, considering siblings' needs over a broader perspective (Wood, 2006; Contro & Scofield, 2006; 2012). These results are consistent with certain needs that have already been identified by researchers or clinicians in serious pediatric illness environments (Ballard, 2004; Contro & Scofield, 2006; Gaab et al, 2013; Nolbris & Ahlstrom, 2014). However, the typology is person-centered in that it also includes broader needs associated with the developmental stage of adolescence, not just those related to the specific experience of illness (Adams & Deveau, 1987; Lapwood & Goldman, 2012).…”

The needs of siblings of children with a life-threatening illness, part 2: Psychometric validation of the IBesFEMS

“…The goal of this care is not only to accompany the child whose life is threatened, but also to ease the multidimensional suffering of the entire family, be it physical, social, spiritual, or psychological in nature (van Horne & Kautz, 2007; McNamara-Goodger & Feudtner, 2012). The family-centered approach is an important characteristic of this care philosophy (Jones et al, 2011; Contro & Scofield, 2012). The care team's interventions respect the primordial role of the parents and siblings in accompanying the seriously ill child, and the team tends to play a supportive role (Lenton et al, 2006; Price et al, 2013).…”

“…Numerous private and public organizations have called for more scientific research to document the specific needs of siblings (Whittam, 1993; Robinson & Mahon, 1997; IOM, 2003; Wilson et al, 2003; Contro & Scofield, 2006; Graham et al, 2006; Jones, 2006; MSSS, 2006) so as to better orient medical and psychosocial practices (IOM, 2003). The lack of measurement instruments specifically aimed at siblings and tailored to the various stages of their development has been deplored (IOM, 2003; Graham et al, 2006; MSSS, 2006).…”

“…Despite the emergence of a care philosophy for pediatric palliative care, there has been very little research documenting the experience of siblings, and knowledge about their specific needs is fragmented (Jones, 2006; MSSS, 2006; Contro & Scofield, 2006; 2012; Long et al, 2015). Professionals involved in this practice context therefore have very few theoretical referents and limited means with which to assess the needs of these children in the family or care environment.…”