Search

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 of "the 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: The "voice 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., ((c) 2015 APA, all rights reserved).)

Purpose/objectives: To elucidate parents' experiences when caring at home for their child with incurable cancer and to show how parents give meaning to their experiences throughout the end-of-life (EOL) phase., Research Approach: Interpretative qualitative study., Setting: Five academic pediatric oncology centers., Participants: 42 parents of 22 children with incurable cancer, cared for at home., Methodologic Approach: An inductive thematic analysis of single and repeated open interviews using phenomenological techniques., Findings: Four EOL stages were identified: becoming aware of the inevitable death, making the child's life enjoyable, managing the change for the worse, and being with the dying child. The essence of parenting during those stages was captured by the notion of being meaningful to the child and preserving the parent-child relationship. Parents were able to cope better with the EOL phase and to sustain their parenting role because of their ability to postpone grief, enjoy their child's expressions of happiness, see the child's identity despite physical impairment, and enjoy the rewards they experienced from being there for their child., Conclusions: Parenting while losing a child brings parents to the point of an existential crisis. The child's deterioration forces parents to redefine their traditional parenting role. Although the way parents give meaning to their caregiving experience helps them cope, it can decrease their ability to acknowledge the child's needs., Interpretation: Nurses can help parents to face the reality of their child's situation and redefine their role accordingly, such as by providing information and alternative perceptions that fit the child's changed needs while preserving the parent-child relationship. Attention to signals indicating stress disorders is needed.

Purpose: For children with incurable cancer death usually is anticipated and preceded by a phase of palliative care. Despite recognition that parents have difficulty adapting to a palliative perspective there is little insight into this process. This study explored, from a parental perspective, the process parents go through when cure is no longer a possibility., Participants and Methods: A multicenter study using qualitative research was undertaken during the EoL phase. One-time and repeated open interviews were conducted with 44 parents of 23 children with incurable cancer., Results: Feelings of loss play a prominent role during the EoL phase. Dealing with loss is a process of stepwise relinquishing that becomes manifest in an internal struggle between preservation and letting go. Preservation means that parents try to maintain the child's status quo. Letting go means parents give up their resistance to loss in service of their child's well-being. Although the relative measure of each changes over time, parents have great difficulty making the transition because it implies a change in source of control. A timely completion of this transition positively influences the child's well-being as well as the evaluation of enacted parenthood., Conclusion: For parents the essence of the palliative process is not to accept death but to deal with the loss of their child. Although the need to avoid loss and gain control by means of preservation is fully understandable, the study indicated that parents who made the transition to letting go had an increased receptiveness of their child's real situation and needs.

Background: One in four cases of childhood cancer is incurable. In these cases death can usually be anticipated and therefore preceded by a phase of palliative care. For parents, preparing to let their child die is an extraordinarily painful process. Most struggle to preserve their child. This study identified, from a parental perspective, the main factors that influence the transition from preserving life to letting go., Procedure: A multi-centre, qualitative research, study was undertaken during the end-of-life (EoL) phase, comprising single or repeated interviews with 44 parents of 23 children with incurable cancer., Results: We discovered that uncertainty, fragmentation and anxiety underpin the preserving life perspective. A perspective of letting go could be supported by a variety of factors. These included: Certainty that the child cannot be cured, postponed grief, the perception of suffering, the ability to disentangle needs and the ability to parent meaningfully. Hope, creating a peaceful parent-child relationship, and the attitude of professionals, could support movements in either direction. Of these, certainty, and in most cases postponed grief, were pre-conditions for the transition towards letting go. Strategies such as not challenging the parents' suppression of grief, creating certainty about the child's condition and supporting parents in efforts to redefine their parental role, supported progress towards accepting a letting go perspective., Conclusions: Parents' internal struggle between a preserving frame of mind and one of letting go is influenced by a combination of factors. However, professionals can influence some of these factors in order to facilitate this transition., (Copyright 2010 Wiley-Liss, Inc.)