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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 449 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. Indirect ways included what was spontaneously said by the child about his or her feelings, needs, wishes, or perceptions or, indeed, what could be derived from the child’s behavior. Parents of very young children relied mainly on the nonverbal signs of the child. Once toddlers could articulate some response, even only yes or no, parents started to use both direct and indirect strategies. A parent could use different strategies when dealing with different topics. Deciding on which strategy to use. Parents felt that indirect strategies were the least onerous for the child. Understanding their child through indirect strategies, however, required efforts from them as a parent. For example, they had to listen to the expressions the child made spontaneously or observe the child’s behavior. Indirect strategies also required interpretational efforts to fully understand what the child was saying or to “read” the child’s behavior. This ran the risk that their translations could differ from the child’s true needs and perceptions. We encountered many situations in which parents felt satisfied that they had successfully read their child’s “voice” and were acting in line with it. The mother of Erik (2 years old, brain tumor) told us she and her husband had decided not to hospitalize their son anymore: Even at the hospital care park, he had already said: “Erik will wait in the car.” He already knew we visited the place for him. And then he clung to the buggy. Those kind of things. He obviously thought: “as long as I’m in my seat, I’m safe.” (. . .) So being at home was far more comfortable for him. Parents often indicated feeling uncertain about their interpretations of the signs and wondered whether they had grasped the “child’s voice” accurately. Most parents realized that asking their child to share his or her feelings and thoughts was the most direct and probably most reliable way to hear “the voice of the child.” The parents’ stories showed that parents could feel some reticence about starting such a conversation, which made them fall back on indirect strategies (see Table 3). The most important reasons mentioned by the parents for using indirect instead of direct strategies were the parent’s feeling that their child preferred not to talk about the topic; or that they themselves considered a topic as too sensitive and thus as a potential burden for the child. They feared the child would lose control. Parents, for instance, would ask the child directly to express a wish, while the feelings of the child about the approaching death seemed far more difficult for the parents to approach directly. Parents also avoided harming the child’s ability to live Table 3 Parental Motivations (Not) Initiating Conversations With the Child Motivations initiating conversations • To adapt their care and support to the child’s needs • Wanting to be able to fulfill their child’s wishes • Thinking conversation will help their child to cope with the situation • Improve understanding of their child • Wanting to make arrangements in line with their child’s needs/perception • To stay close to their child’s inner world and to enjoy his life. Many parents also used passive strategies because they felt unable to comfort the child or to alleviate the child’s situation when a direct strategy would upset him or her. Luke (14 years old, osteosarcoma) got into his mother’s bed this morning after having a bad dream about his own funeral. The mother of Luke: This morning, I doubted whether I should talk to him about whether he would like to be buried or cremated in due time, as he already dreamed about his own funeral. However, as he was very upset, had a headache and was not feeling well, I thought it would be better to leave it, and, I hope, talk to him about it another time. Taking the Child’s Perspective Into Account Diversity in putting forward thevoice of the child.” All parents spontaneously gave vivid descriptions of how their child acted and coped with situations with which he or she was confronted. The parents’ stories were interspersed with comments reflecting their view of their child, such as their pride about the child’s coping with a new setback or how their child managed the suffering of symptoms. Most stories primarily reflected the parents’ perspective. In addition to this, parents also put the child’s perspective into words. However, our data showed large differences in the extent to which parents presented their child’s perspective. Some parents hardly addressed their child’s perspective at all, even when asked for it, whereas others spontaneously put forward the child’s perspective again and again. The latter type of parents seemed more sensitive to the child’s signals. Their interpretation of the child’s behavior made sense. In addition, they presented examples of how they carefully considered their own, and their child’s perspectives, in setting goals and making decisions. The parents, who hardly incorporated the child’s perspective into the interviews, also appeared to have difficulty in drawing conclusions that fitted their description of their child’s behavior. Threatened by the child’s perspective. It appeared that parents differed in their ability to acknowledge the child’s perspective. From our interviews, we learned that parents could acknowledge the child’s perspective as long as it was not too threatening for the parents themselves. When parents feared facing the child’s perspective they tended simply to ignore it. They did not search, neither directly nor indirectly, for the child’s inner perspective. Thus they limited their ability to represent thevoice of the child.” It was also found that Motivations not initiating conversations • Their child signals that he doesn’t want to talk about it • Considering the topic too sensitive • Not wanting to burden their child • Thinking it will annoy their child • Thinking that their child is coping well without talking • Being afraid it is too soon: waiting for their child to initiate conversation • Being afraid to disturb their child’s zest for life • Feeling inhibited by other family members • Feeling unable to deal with their child’s response/suffering • Judging the topic of minor importance

450 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. when the child’s perspective was considered threatening, parents interpreted the child’s behavior differently. Mostly, they introduced doubts and questioned their interpretation or made interpretations that fitted primarily into their own goals. Rianne (10 years old, bone tumor), for instance, underwent a mutilating surgery in a final effort to have her fully cured. The intervention failed and as a result she is now wheelchair and bed bound, has a prosthesis and needs rehabilitation therapy. She now shows signs of being afraid and giving up. Her father told us she does not eat her food any more, shows limited interest in daily life, refuses to cooperate with exercising, is easily irritated, and has outbursts of anger. Her father had found hope through the option of further treatment: Well I’m not finished yet. If you want something for your child, but she herself does not share this same thought ...Iwant her to do this, and to do that; this is good for you, that is good for you ...have that sip, and not a bit of water, but take something ...with more vitamins . . . you just want the best for your child. And she is a child of course. She can play a trick on us, and that is difficult, because what is real and what is not. And, well, also ...when she is at school she is okay and the moment she is at home she complains: “it hurts, my stomach hurts”. When you only bring her some water she gets into a panic. Aspects related to difficulty in attending to the child’s perspective. The parents in our study had the best intentions for their child. They wanted to be there for their child and made a great effort to do so, as was described extensively elsewhere (Kars, Grypdonck, & van Delden, 2011) Therefore, the difficulty in attending to their child’s perspective seemed more a matter of not being able to act otherwise, than a matter of unwillingness or selfishness. Not being able to acknowledge the child’s perspective, or to take it into account, was largely due to the parents’ own struggle to try to cope with the loss of their child, their need to enjoy the time left together with their child, and their feelings of impotence in comforting their child in approaching the end of his or her life. In an earlier publication based on the PRESENCE study it was shown that, from a parental perspective, the essence of the EOL phase is better characterized as coping with loss, than as the acceptance of death (Kars, Grypdonck, de Korte-Verhoefet, et al., 2011). This explains, “For parents knowing that the death of their child is inevitable does not preclude their need to avoid feelings of loss. This took the form of an internal struggle between “preservation” and “letting go.” Preservation meant parents avoided the reality of loss by sustaining life. Letting go meant parents recognized the inevitability of death and they felt prepared to subordinate their need to avoid feelings of loss to the child’s well-being and comfort. For most parents the balance shifted over the course of the EOL phase from “preservation” toward “letting go.” Compared to the parents who predominantly adopted a preservation attitude, parents who adopted predominantly a letting go perspective were also the ones who were more receptive toward thevoice of the child.” They showed that their child’s perspective was taken into account in how they set goals and made decisions. Parents felt a strong need to keep their child going by facilitating a worthwhile and enjoyable existence for him or her. They felt their child could cope with his or her situation better when he or she enjoyed life. Many parents felt safer if they fed their child’s zest for life to prevent him or her giving up prematurely and thus initiating a downward spiral that might hasten death. With this in mind, parents feared exploring the child’s perception, as was the case with the father of Luke (14 years old, osteosarcoma). Luke currently attends secondary school. He usually comes home early: Of course, it could be that he is not feeling well at that moment. I cannot read his mind. However, I do find it important that he goes to school. This gives him something else to think about. If he were to stay at home every day, I am scared that he will start thinking about what is going to happen. Moreover, this could possibly make him downhearted to the extent that he might reach the point at which he says: “I give up.” That is what I am afraid of the most. Another difference between parents who represented the child’s perspective in their stories and those who did not had to do with their competence in comforting their child facing the EOL. Some parents provided clear pictures of how they soothed and comforted their child. These parents found meaningful ways to be there for their child, irrespective of the child’s response to difficult situations and breaking information, or to his or her suffering from pain, anxiety, or to the burden of treatment or the process of dying. Other parents, in particular those who had difficulty in shifting toward a “letting go” attitude, expressed their difficulty in comforting the child in his or her struggle to live on toward the end of his or her life. Discussion The current study revealed that parents can still have difficulty in gaining an insight into their child’s perspective even though they may be intensely involved in his or her care and support during the EOL phase. Parents who actively searched to understand their child’s inner perspective used direct and indirect strategies. They preferred indirect strategies when their child avoided talking or when they considered the topic as a burden for the child or for themselves. Differences were seen in the extent to which parents could acknowledge the child’s perspective. An inability to attend to the child’s perspective was largely due to the parents’ struggle to cope with loss. The analysis was conducted post hoc, which can be considered a weakness of the study. The data collection was aimed primarily at exploring the “lived” experience of parents. Parents were not asked directly to reflect on their ability to take the child’s perspective into account. Neither could we validate our insights through new interviews and this might have weakened the validity of the findings. However, the parents provided extensive descriptions of how their child acted in daily life and their own and their child’s perspective was a topic in the interviews that was fully addressed. To improve the validity of this interpretative study, a team of three people carried out the analysis. This enabled us to draw conclusions, based on careful interpretation and discussion, aimed at achieving a deeper understanding and agreement. The secondary analysis by a student reinforced the trustworthiness of our findings. But this does not completely resolve the limitations of the data collection. The study is strengthened by the inclusion of the perspectives of both fathers and mothers. In addition, data collection during the palliative phase has probably brought the findings closer to reality than exploring the parents’ perspective in hindsight. Therefore, the results can be considered a step toward a greater understanding of the parents’ representation of the voice of their child. Parents could use direct and indirect strategies in order to gain insight into their child’s inner perspective. Trying to get access to the

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