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

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. With parents who completely rely on indirect strategies,
the risk of differences emerging between the child’s perspective
and that which its parents present as such may be great.
References
AAP Committee on Bioethics. (1995). Informed consent, parental permission,
and assent in pediatric practice. Pediatrics, 95, 314–317.
Baker, J. N., Hinds, P. S., Spunt, S. L., Barfield, R. C., Allen, C., Powell,
B.C.,...Kane, J. R. (2008). Integration of palliative care practices into
the ongoing care of children with cancer: Individualized care planning
and coordination. Pediatric Clinics of North America, 55, 223–250, xii.
http://dx.doi.org/10.1016/j.pcl.2007.10.011
Bluebond-Langner, M., Belasco, J. B., & DeMesquita Wander, M. (2010).
“I want to live, until I don’t want to live anymore”: Involving children
with life-threatening and life-shortening illnesses in decision making
about care and treatment. The Nursing Clinics of North America, 45,
329–343. http://dx.doi.org/10.1016/j.cnur.2010.03.004