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

CHILD PERSPECTIVE IN

CHILD PERSPECTIVE IN PEDIATRIC PALLIATIVE CARE 451 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. child’s inner perspective required a deliberate and active application of these strategies, irrespective of whether it concerned a direct or an indirect approach. We encountered a tendency to rely predominantly on indirect strategies. In line with the literature, the parents used indirect strategies, in both young and very ill children, in order to compensate for their limited or lost ability to communicate, or in older children, whose openness about their feelings was hampered (Mårtenson & Fägerskiöld, 2008; Tates et al., 2002; Zwaanswijk et al., 2011). However, the parents’ main reasons to avoid direct conversations were to protect their children against an extra burden and to protect themselves. In pediatrics, the parents’ tendency to shield their child from informational burden is common (Tates et al., 2002; Young et al., 2003; Zwaanswijk et al., 2011). The parental need to protect themselves by avoiding direct conversations is less frequently reported. When illuminating the child’s voice from the parent’s perspective fulfill, it becomes clear how they struggle to be good parents, while at the same time managing their own needs. All parents were intensely involved in their child’s life and intended to act beneficently to their child. Many efforts were made to identify and to fulfill their child’s wishes and needs. As indicated in other studies, the parents wanted to be there for their child and emphasized being responsible and advocating good childcare in the child’s best interest (Bluebond-Langner et al., 2007; Hinds et al., 2009; Woodgate, 2006). However, in the context of EOL the parental burden, with regard to sharing perspectives, can become unbearable. They could face and attend to the child’s perspective as long as it did not conflict with their other parental tasks or with their ability to cope with the threat of losing their child (Hilden et al., 2001). Therefore many parents did not actively search for the child’s inner perspective when they feared the outcomes. Because of this, parents might hear the voice of their child less clearly than they intend to do. The extent to which parents spontaneously represented their child’s perspective in the interviews was rather low. In a study on making decisions about treatment in pediatric oncology, Stewart et al. (2012) also noticed that parents discussed their child’s involvement only when specifically prompted by the investigator. This is in line with the notion that, despite children’s rights to have their views heard in matters that affect their lives (United Nations, 1989), doctors and parents easily omit the child’s perspective in health care communication (Stewart et al., 2012; Tates et al., 2002; Tates & Meeuwesen, 2000). This seems especially true in the EOL phase. We found that parents had reasons to incorporate their own goals and needs into their interpretation of the child’s signals. This was particularly true for those parents who felt unprepared to subordinate their feelings of loss to the child’s well-being (Bluebond-Langner et al., 2007; Kars, Grypdonck, de Korte-Verhoef et al., 2011). Parents exerted some control over the situation by the way in which they represented the voice of their child. With Young et al. (2003), we conclude that the voice of the child is easily drowned out by the parents’ voice in pediatric care settings. Practical Implications Increasingly, the conclusions are drawn that an open communication is helpful for both child and parents, even in EOL situations (Hinds et al., 2001; Hinds et al., 2005; Mack et al., 2007; Mack & Joffe, 2014). However, the parents’ fears about starting such a conversation can be perfectly well understood if they do not feel capable of comforting their child or fear that their child will give up prematurely. Despite the parents best intentions to act in the interest of their child, their difficulty in coping with loss might hamper their ability to give full weight to the child’s perspective as they search for what they believe to be the child’s best interest. Given the existential character of the fear of losing their child, parents might withdraw from medical care or break down when they feel forced by health care professionals to acknowledge the child’s perspective. In our sample, we encountered several examples of such withdrawal or of parents who broke down. Both consequences make the child’s situation worse and are therefore, undesirable. A careful and compassionate approach is required in order to support parents in giving their child a voice while at the same time preserving their and their parent’s ability to cope. During such a daunting time, being open to the child’s signals and discussing them is a difficult task for parents. To be able to do so, parents need to develop their ability to subordinate their need to avoid feelings of loss to the goal of being a parent that supports a good death. This starts with listening to their child’s signals and interpreting them realistically. We suggest a dual approach. First, professional caregivers could actively discuss the child’s signals with the parents and share possible interpretations. These types of discussions offer the opportunity of introducing interpretations and possible responses based on clinical expertise which can enlarge the parental frame of reference. Parents in our study sometimes mentioned that they lacked such a frame of reference. Second, professionals could encourage parents to distinguish the difference between their own fears, needs, and goals from those of their child. Unraveling the parent’s perspective from the child’s perspective can be helpful in finding appropriate caring and comforting strategies. However, it is clear that this can only be accomplished within a trusted parent–professional relationship. Our insight into the child’s perspective at the EOL remains limited. We suggest for future research exploring strategies further that can improve child participation during such daunting situations. Conclusion At the EOL, the parent’s understanding and representation of their child’s perspective is primarily based on their monitoring of the child’s signals, rather than by inviting the child to share his perspective or to be actively involved in decision-making or setting goals. 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