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The parents’ ability to attend to the "voice of their child" with incurable cancer during the palliative phase

The parents’ ability to attend to the "voice of their child" with incurable cancer during the palliative

Health Psychology © 2015 American Psychological Association 2015, Vol. 34, No. 4, 446–452 0278-6133/15/$12.00 The Parents’ Ability to Attend to the “Voice of Their Child” With Incurable Cancer During the Palliative Phase Marijke C. Kars University Medical Center Utrecht, Utrecht, The Netherlands Mieke H. F. Grypdonck Ghent University Leonie C. de Bock and Johannes J. M. van Delden University Medical Center Utrecht, Utrecht, The Netherlands This document is copyrighted by the American Psychological Association or one of its allied publishers. This article is intended solely for the personal use of the individual user and is not to be disseminated broadly. Objective: In pediatric oncology, parents want, and are expected, to act and decide in the best interest of their child. A recent qualitative study (PRESENCE study) indicated that parents had difficulty in doing so. The aim of this subanalysis was to describe and offer an explanation for the parents’ actions in expressing and handling ofthe voice of the child.” Method: A multicenter, qualitative research study comprising 37 interviews conducted with 34 parents of 17 children with incurable cancer, cared for at home, during the palliative phase. A thematic analysis was conducted. Results: Thevoice of the child” becomes manifest in the parents’ expressions of the child’s needs and perceptions. Parents who actively searched to understand their child’s inner perspective used direct and indirect strategies. Parents preferred indirect strategies when their child avoided talking or when they considered the conversation as threatening for the child, or for themselves. Even if the parents show an intense involvement in the care and support of their child; they can still have difficulty acknowledging the child’s perspective. An inability to take into account the child’s perspective was largely due to the parents’ own struggle to cope with loss. Conclusions: Whether or not the voice of children approaching the end-of- life is heard, often depends on their parents’ ability to give them a voice. Professional caregivers have a difficult task in supporting parents in giving their child his or her voice, while at the same time preserving their, and their parents’, ability to cope. Keywords: child participation, decision-making, parenting, pediatric oncology, pediatric palliative care In pediatrics, “the best interest of the child,” has become the prevailing standard for decision-making (Kopelman, 2007). The participation of children in care and treatment decisions is considered an important tool to do justice to the child’s interest. Therefore pediatric societies in North America and Europe take the position that health care providers should share relevant information with their child patients to enable their active participation in decisions about care and treatment (AAP Committee on Bioethics, 1995; EAPC Task Force, 2007; Spinetta et al., 2003). Studies on shared decision-making indicate, however, that the role of children in making decisions about their treatment is limited, partly because parents tend to shield their children from potentially upsetting information (Bluebond-Langner et al., 2010; Zwaanswijk et al., 2007; Zwaanswijk et al., 2011). Marijke C. Kars, Department of Medical Ethics, University Medical Center Utrecht, Utrecht, The Netherlands; Mieke H. F. Grypdonck, Department of Nursing Science, Ghent University; Leonie C. de Bock and Johannes J. M. van Delden, Department of Medical Ethics, University Medical Center Utrecht. This study was supported by a grant from the Dutch Cancer Society. We thank Ria de Korte-Verhoef (RKV) for her assistance in coding and analyzing the data. We would like to thank Ria de Korte-Verhoef (MKV) for her assistance in coding the data. Correspondence concerning this article should be addressed to Marijke C. Kars, University Medical Center Utrecht, STR 6.131, P.O. Box 85500, 3508 GA Utrecht, The Netherlands. E-mail: In the special case of end-of-life (EOL) care, children with incurable cancer and their parents are faced with disruptive information and many choices (Hinds et al., 1997). EOL care is primarily focused on the child’s, and the family’s, quality of life. Thus the highly protocol-driven, cure-directed treatment is replaced by a more individualized approach, guided by the child’s and the families preferences (Baker et al., 2008; Kars, Grypdonck, & van Delden, 2011). Consequently, the child’s participation is of major importance. Children are increasingly cared for at home as it is thought that the needs of dying children can best be met there. In the Netherlands for instance, approximately 110 children die each year from cancer, of which 63% are cared for at home during the palliative phase (Pousset et al., 2010). This is a special situation in which children are increasingly dependent on their parents for their care and decision-making (Bluebond-Langner et al., 2007; de Vos et al., 2011). Especially in homecare situations, and when the child deteriorates, professionals rely on the parents’ representation of the child’s needs. The participation of children in care and treatment decisions during the EOL is hardly addressed in research. Neither is the way “the voice to the child” is heard and then communicated by their parents. When questioned, parents themselves define “making unselfish decisions in the best interest of their child” as the most contributing factor to good parenthood and EOL decision-making (Hinds et al., 2009). Several studies however, indicated that par- 446

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