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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 PEDIATRIC PALLIATIVE CARE 447 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. ents’ can have difficulty in doing so, when facing their child’s EOL (Bluebond-Langner et al., 2010; Hechler et al., 2008; Kars, Grypdonck, & van Delden, 2011; Mack & Joffe, 2014). Therefore a deeper understanding of the way parents gain insight and communicate their child’s perspective will help professionals to evaluate the child’s and the family’s situation. In the PRESENCE study, we used in-depth interviews to explore the experiences of parents who cared at home for their child with incurable cancer throughout the palliative phase (Kars, Grypdonck, de Korte-Verhoef et al., 2011; Kars et al., 2010; Kars, Grypdonck, & van Delden, 2011). It was observed, during the initial data analysis, that there was great diversity in the extent to which parents showed insight and gave expression tothe voice of the child.” This was considered remarkable, because it seems a prerequisite for a parent to take the child’s perspective into account to provide good care. Therefore, we conducted a further analysis of the PRESENCE data to examine three aspects: (a) how parents gained insight into their child’s perspective; (b) to elucidate the parental diversity in acknowledging thevoice of the child”; and (c) to gain insight into the factors that underlie the diversity in the parents’ ability to take into account their child’s perspective. Methods This study is based on data from the PRESENCE qualitative interview study, which explores the experiences, needs, and coping strategies of parents caring for their children with cancer in the palliative phase. The methodology of the overall study has been extensively described elsewhere (Kars, Grypdonck, de Korte-Verhoef et al., 2011; Kars et al., 2010; Kars, Grypdonck, & van Delden, 2011). The study was approved by the medical ethics committee of the University Medical Center Utrecht. Written informed consent was obtained from all participating parents. For the current qualitative study, an inductive interpretative thematic analysis was used (Boeije, 2010; Kvale, 1996). Sample For the PRESENCE study, 44 parents of 23 children (0–18 years old), with any type of cancer, who had reached the palliative phase, and were cared for at home, were recruited from five university centers for pediatric oncology in the Netherlands. In none of the cases was treatment intended to cure the children, thus the quality of life, and for some of them, the prolongation of life too, was paramount. To gain insight into the parental process over time, second individual interviews, with one or both parents, were held in seven cases (n 12) and in one case a third interview also took place. In total 57 interviews were held, of which 37 were conducted during the palliative phase and 20 soon after the child’s death. The current study selected for analysis the interviews that were conducted prior to the child’s death. This was considered as the phase during which “the voice of the child” was expected to be most present. Ten parents of six children could be interviewed only after their child’s death, although the parents were contacted before. These parents were therefore excluded. Thus the sample of the current study consisted of 34 parents of 17 children ranging from 9 months to 18 years old. For characteristics see Table 1. The Table 1 Characteristics of Respondents (n 34) characteristics of this sample did not significantly differ from the larger PRESENCE sample. Data Collection Variable n % Gender parent Male 17 50.0 Female 17 50.0 Age 30 2 5.9 30–39 17 50.0 40–49 14 41.2 50 1 2.9 Marital status Married/cohabiting 30 88.2 Divorced 4 11.8 Education a Low 11 32.4 Middle 15 44.1 High 8 23.5 Gender child Male 10 59 Female 7 41 Age child 1 2 11.8 1–4 5 29.4 5–11 5 29.4 12–15 3 17.6 16 2 11.8 Type of cancer Leukemia/lymphoma 6 35.3 Medulloblastoma 2 11.8 Neuroblastoma 1 5.9 Renal tumor 1 5.9 Hepatocellular carcinoma 2 11.8 Bone tumor/soft tissue sarcomas 4 23.5 Germ cell tumor 1 5.9 Time of interview (total 37) before death 6–12 months 4 10.8 3–6 months 7 18.9 1–3 months 13 35.1 2–4 weeks 4 10.8 1–2 weeks 5 13.5 1 week 4 10.8 a Low primary school, lower secondary general, lower vocational; middle higher secondary general education, intermediate vocational education; high higher vocational education, university. In-depth interviews were held with all parents individually. This was intended to facilitate a situation in which each parent could speak freely about his or her situation and feelings without running the risk of disclosure of, as yet, unspoken thoughts in the presence of his or her spouse. The second interviews, with two mothers and one father of three children, which were conducted during the palliative phase, were also included. In total 37 interviews conducted from August 2005 to November 2007 were analyzed. Thirty-three interviews were conducted by a senior pediatric nurse (MCK) and four interviews by a senior nurse (RKV). Both were trained and experienced qualitative interviewers. Interviews were held ranging from 48 weeks to 2 days before death. In 1 to 2 hrs, the following topics were covered: parental care and goals; the

448 KARS, GRYPDONCK, DE BOCK, AND VAN DELDEN 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. parent–child relationship and communication; parting and loss; coping; professional care and family life. Questions were aimed at exploring the parents’ experiences and perceptions. These included questions addressing the child’s perspective on relevant issues, such as: participation in normal life, symptom management, living with a fatal illness, facing the EOL, the parent–child relationship, et cetera. All interviews were tape recorded and transcribed verbatim. Data Analysis Data analysis was conducted in accordance with methods that optimized validity and rigour (Morse et al., 2002). Two, complementary, intertwined strategies were used during the analysis, namely coding and thinking theoretically (Strauss & Corbin, 1998). Three members of the PRESENCE study research team (MCK, MHFG, RKV) read the transcripts to obtain a sense of the interview as a whole. Memos were made of each interview to provide an overview of how the parents both handled, and coped with, the child’s perspective. Secondary fragments related to the child’s perspective were identified and coded (open coding). The meaning of the separate fragments was determined by the meaning of the interview as a whole (Kvale, 1996). The code tree was redesigned and condensed after the inclusion of eight cases and a second phase of focused coding began (Charmaz, 2006). The main researcher (MK) and a second researcher (RKV), coded all the material and checked for themes and patterns. The team worked toward a consensus in their interpretation. This researcher triangulation increased both the validity and reliability of the analysis. Coding was supported by the software program NVivo7 which gave us a clear overview of the content and meaning of the codes and categories. It also provided insight into the recurrence of themes in the separate interviews, as well as the contribution of the separate interviews to a particular code or category. The transparency, and therefore auditability, of the analytical process, and the verifiability of the research were enhanced by using memos to explain the researchers’ provisional interpretations and conclusions. The analysis was validated by a student (LCB). She analyzed, independently, 30 interviews and arrived at similar conclusions. Saturation was reached on the main categories of this study. Results Three aspects were identified from the interviews that played a part in the parents’ ability to represent thevoice of the child.” First, the context in which parents had access tothe voice of their child”; second, the strategies they used to get insight into the child’s inner perspective; and finally, the parent’s ability to take into account their child’s perspective. The Context in Which Parents Had Access tothe Voice of the Child” Involvement in the child’s life. The parents’ stories were filled with examples that reflected how intensively they guided, supported, and took care of their child, in many aspects of his or her life. This involved the child’s participation in daily life, the opportunities for their child to enjoy life, symptom management, visiting the hospital, the complex medical decision-making, as well as the smaller decisions relating to daily life, and how their child coped with his or her deterioration and EOL issues. To do so, many parents had reduced their working hours or were on sick leave. This enabled them to be there for their child, to provide care, and to spend time together. Most parents were involved closely in their child’s everyday life and cared for their child themselves. The parents’ presence and their efforts to care for their child intensified in the weeks or days before death. During this time many parents even slept beside their child during the night. Parents related how they were aware, more than anyone else, of their child’s physical condition and psycho-social functioning. They felt that as a parent, and because of their intense involvement in their child’s life, they knew their child well and could understand what he or she needed. The interviews showed that parents often represented their child’s voice. This was, for example, in presenting the child’s suffering from symptoms to the general practitioner, or discussing the child’s quality of life with the oncologist, to decide on further options for treatment. This seemed an almost natural act. None of the parents questioned his or her ability to represent their child’s voice. Feeling responsible for paying attention to the child’s voice. In the interviews, the parents let thevoice of the child” be heard in talking about how the child experienced and perceived the situation he or she was living in, or was confronted by. Most parents considered it a part of parenthood to be aware of the child’s perspective, to pay attention to it, and to provide support and guidance in response to the child’s signs. For example, the mother of Deborah (10 years old, myelogenous leukemia) related: Certain conversations I have had with her ...about passing away. And about how she thinks ...howitmight go. She gives off signals. She doesn’t talk about it. Actually, at the moment, not at all. It is a bit further away at the moment. And ...whenever she shows a signal, I will be there for her to talk to. If this is the case, we talk about how she thinks ...orhowIthink that it will go ...andwhat I try to give her, I just do not want her to be afraid. The analysis of our data revealed that the parent’s expression of thevoice of the child” becomes visible in the insight they showed into the child’s feelings, perceptions, needs and wishes, based on the child’s inner perspective. Strategies to Understand the Child’s Inner Perspective Direct and indirect strategies. We learned from the parents’ stories that they used direct and indirect strategies to gain insight into their child’s inner perspective (see Table 2). Direct strategies would encompass active inducement by asking the child directly. Table 2 Parental Strategies to Gain Insight Into the Child’s Perspective Passively • Spontaneous verbal signals from the child • Nonverbal signals from the child • Statements the child had made in the past • Information provided by others Actively • Initiating conversation • Encouraging continuation of spontaneous expressions

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