Towards advance care planning in pediatrics: a qualitative study on envisioning the future as parents of a seriously ill child

A purposive sample of Dutch-speaking parents of children diagnosed with a life-limiting condition under 18 years of age was included. To capture a wide range of perspectives, variation was sought with respect to the parent’s gender and education, the child’s diagnosis, stage of illness, life expectancy, and age. Both bereaved and non-bereaved parents were eligible. Bereaved parents were included as they are able to reflect on their thoughts about their child’s future in retrospect, while overseeing their child’s whole disease trajectory, including end-of-life. Pediatricians in one university medical center and two peer supporters introduced the study to parents and asked permission for the researchers to contact them.

Parents were offered a choice to participate in a prescheduled focus group interview or an individual face-to-face interview. The interviews took place between June 2018 and March 2019. Individual interviews were scheduled at a location and time as preferred by the parents. The two focus group interviews were moderated by JF (trained qualitative researcher, MD) and MCK (experienced qualitative researcher, RN). JF conducted the individual interviews. The interviews were guided by a topic list, which was based on literature and expert knowledge. The topics included future time frame, future perspectives, sharing of future perspectives, future goal setting and decision making. (Online Resource 1) Interviews were audio recorded and transcribed verbatim. Parent and child demographic variables were collected through an additional questionnaire. The research ethics committee of the University Medical Center Utrecht determined that this study was exempt from the Medical Research Involving Humans Act (September 27, 2017; Reference number: 17–662/C). All participants provided written informed consent.

A thematic analysis was performed [2]. During the entire process, three researchers (JF, TT, MCK) were involved. Researcher triangulation was ensured to improve reliability and validity of the analysis. The thematic analysis consisted of three phases [4, 26]. First, the core researchers (JF, TT, MCK) individually (re)read the transcripts of five individual interviews to get familiar with common aspects and phrases. Two researchers (JF, TT) individually analyzed and coded meaningful fragments in the light of the research question and compared interpretations together. The meaning of the separate text fragments was determined by interpreting them in light of the whole interview [16]. Initial codes were recoded, resulting in an adapted code list with themes and concepts at a more conceptual level [2]. During the second phase, new interviews were read and discussed by two researchers (JF, TT). One researcher (JF) coded all transcripts, supported by the software program Nvivo 11. The code tree was evaluated and adjusted. Lastly, the research team (JF, TT, MCK) identified key themes and related subthemes. The researchers went back and forth between the different steps to guarantee constant comparison. Code saturation was reached on a conceptual level [14].

All parents expressed some thoughts about the future of their child and family. Several triggers stimulated them to contemplate the future. These were often disease-related triggers, like upcoming medical evaluations, procedures, or decision making. Besides that, questions about the child’s development in the context of its disease stimulated parents to think about the future. Triggers could also be related to safeguarding the continuity of care. Parents reported external triggers, like changes in laws and financial support, and internal triggers, such as worries about the long-term task of caregiving and related parental burden of care. Lastly, parents mentioned that existential questions stimulated them to think about the future of their child. These questions could arise from prior experiences with illness, death, and dying or from their spiritual beliefs. These questions made parents think about their underlying values and influence of these values on future decision making.

Four main themes were identified when parents were asked to envision the future of their child. It was seen that (1) there is a focus on the near future; (2) future perspectives are intertwined with experiences in the present and the past; (3) future perspectives range from a disease-related orientation to a value-based orientation; and (4) there is “no sharing without caring.” Representative quotations were chosen to illustrate the identified themes. Perspectives on the future while caring for a seriously ill child as described below were quite similar for both bereaved and non-bereaved parents (Table 2).

Although many parents said to live one day at a time, they could not neglect future perspectives. As parents expressed thoughts about the future of their child and family, they focused on the near future initially. They felt being withheld from looking further ahead by recurrent episodes of clinical deterioration of their child, prognostic uncertainty, upcoming medical procedures, and the actual burden of daily care giving (Table 2, Quote 1A). Although most parents limited their reflections to the near future initially, they showed contemplation of a further future in actions they reported. These actions showed that parents prepare themselves, at least in a practical way, for a further future where deterioration of their child’s condition might occur. For example, these were practical arrangements for the child’s death (Table 2, Quote 1B) and integration of certain facilities in a rebuilding plan for their homes.

When parents shared perspectives about the future in the interviews, it was seen that these perspectives were very intertwined with experiences in the present and the past. First, the content of their future perspectives was influenced by their attitude towards the current situation. Parents who were suffering and struggling in the present, tended to see the future as a black box, while parents with a consistent, balanced view on the actual situation of their child could more easily look forward. This did not seem to be related to an either better or worse prognosis (Table 2, Quote 2A). Besides that, in case of experiencing more prognostic certainty in the present, either better or worse, parents showed more ability to elaborate on the future. If future scenario’s seemed realistic to parents, they were more tempted to reflect on those situations, even though it confronted them with unfavorable outcomes for their child (Table 2, Quote 2B). Some parents mentioned that feeling at peace with intense end-of-life experiences in the past, made them more open-minded to think and discuss about a future where similar scenarios could occur (Table 2, Quote 2C). Few parents envisioned the future in relation to decisions made in the past. This made them think about the life they could have had as a family, if only they had made different choices in the past. These elaborations were followed by thoughts about all the good things being a parent of their seriously ill child had brought them. These positive thoughts supported them to face the future (Table 2, Quote 2D). Some parents experienced a connection between past, present and future based on their life views and spiritual beliefs. They framed their perspectives on the future as part of a continuing life story, influenced by a higher power, like God (Table 2, Quote 2E).

Most parents mentioned practical, disease-related perspectives at first, when asked about their views on the future. Common topics were disease progression, next medical evaluations, the child’s development, financing the care costs, safe-guarding care at home, maintaining family life and organization of multidisciplinary care (Table 2, Quote 3A). When asked about their thoughts on the future, most parents did not talk spontaneously about underlying life views, values, hopes, fears, and worries. However, when specifically asked about, they presented all sorts of reflections on more existential themes. Hopes for the future could be concrete, realistic hopes or wishes and dreams, that were to be cherished (Table 2, Quote 3B). Fears and worries regarding the future concerned the loss of their child to death, facing difficult decisions, possible suffering of the child, the ongoing heavy burden of care, and achieving a life as normal as possible for their child. Some parents expressed that addressing these fears was emotional and burdensome to them. Recognizing or discussing their fears confronted parents with worst-case scenarios as a reality and disrupted their coping strategy of focusing on the here and now. However, parents demonstrated this made them not unwilling to contemplate the future. It enabled them to prevent or prepare themselves for a feared situation and left them with a greater peace of mind in the present. Some parents mentioned in hindsight they would have valued more attention to their fears, because they felt overwhelmed and unprepared when a worst-case scenario occurred.

When parents were asked about future care goals for their child, a distinction between disease-related aims and value-based aims was seen as well. Some parents had clear short-term disease-related aims, such as correction of a tracheostomy. These parents could more easily formulate goals of future care. Parents who reported broader, all-encompassing, value-based aims for their child, such as being happy or trying to live an ordinary life, had more difficulties to demonstrate how these aims could guide them to formulate goals of future care (Table 2, Quote 3C). Some parents mentioned that taking the perspective of their child, like “what would my child value the most,” helped them to define goals of future care and treatment.

Most parents recalled discussions about treatment limitations when thinking about future goals of care. They showed to experience these discussions as touching their underlying values, whereas clinicians framed these discussions more in the context of the child’s disease and any medical futility (Table 2, Quote 3D). Some parents addressed treatment limitations themselves because they considered this an essential part of what they valued as good care for their child. However, parents emphasized they would prefer clinicians to initiate these discussions, because the accompanying emotional distress could be a parental barrier to initiate a conversation about treatment limitations.

Although all parents presented elaborate thoughts about the future of their child during the interviews, few said to have discussed the rich content of these thoughts with their clinicians. Several factors were identified that would support sharing of future perspectives with clinicians. First, parents mentioned they need acknowledgment of their challenging context. Parents expressed they felt clinicians have no idea of the impact of caring for a seriously ill child on their daily life. They showed a need for acknowledgement of the burden of care that is on their shoulders (Table 2, Quote 4A). Second, parents want their growing expertise to be acknowledged and be taken into account when it comes to medical decision making (Table 2, Quote 4B). Most parents felt a struggle to be treated as the expert of their child. Some parents felt being judged for their perspectives on their child’s future and feared unintended consequences for their child’s care, without opportunities for reconsideration. Third, parents reported little room to share perspectives outside the medical domain, although they would appreciate it (Table 2, Quote 4C). Besides that, parents expressed to value clinician’s awareness of the child’s identity apart from his or her disease (Table 2, Quote 4D). When their child was seen as an individual person, with an own life story, they felt sharing perspectives on their child’s future with clinicians made more sense.

Lastly, parents expressed a need for a consistent approach of clinicians regarding future care and treatment over time and among different disciplines. Parents reported to struggle to get all clinicians on the same page. If parents felt a shared goal within the team and felt part of the team, this positively influenced their openness to share their perspectives (Table 2, Quote 4E).