The complexity of parent treatment decision-making resulted in three aspects: underpinning factors, influencing factors and values and preferences. Underpinning factors were constant through the decision-making process. These could be interrupted as parent psychological and emotional aspects within decision-making. Influencing factors were those parents may consider when making treatment decisions but appeared to hold different weighting to parents across the data. Parents valued having enough time, being a good parent and being involved in decision-making. Each of these values contained preferences, aspects which were important to parents yet ones they might be willing to compromise on in order to continue with cancer-directed therapy. The literature defines these as ‘trade-offs’, the risks and benefits associated with each treatment option  and what parents were willing to accept in relation to their values.
Parents acknowledged their child may die, yet this did not result in a linear process of moving from cancer-directed therapy to symptom management/palliative care alone. The preferences of continuing cancer-directed therapy could alter at this timepoint with the overriding need to maintain hope, have time with their child and leave “no stone unturned” [30, 31]. This timepoint could be defined as a ‘tipping point’ in identifying a change of goals from continuing cancer-directed therapy in the hope of a cure to the realisation that their child will not survive and wanting to increase time with their child.
Parents experienced emotional adjustment when their child’s cancer relapsed managing the grief, shock, and anguish . Parent emotions may fluctuate throughout the decision-making process depending on their child’s clinical condition, the decisions to be made and their own adjustment to the situation. Emotions have the potential to influence rational decision-making processes . There is a body of decision-making literature on how people make decisions which is typically divided into rational [37, 38], descriptive/psychological [39, 40] and emotional  decision-making. Rationally, parents want to make informed decisions opting for the best treatment that is underpinned by science and statistics. Descriptive/psychological decision-making acknowledges how parents may obtain and process information, and how their previous experiences and intuition can influence decision-making. Emotion in decision-making focuses on parent feelings and emotions of the situation which can be informed by previous experiences, their current situation and anticipated future emotions . The combination of these three decision-making components, (rational, emotional, and descriptive) may produce conflict in the pursuit of a decision that is underpinned by parent values and preferences and in the best interests of their child.
The “coming to terms” between cure and death was not seen in all parents which suggests hope as a central underpinning factor to these parents whose focus was solely on cure . Parents may subconsciously acknowledge what is happening but doing so consciously means confronting or speaking about this fear which some parents may not be able or willing to do. The value of being a good parent and the preferences associated with this differed between parents. Preferences appeared conflicted wanting to prevent suffering, protect their child and act in their child’s best interests whilst continuing with cancer-directed therapies [29, 32] which could induce suffering and not be in their child’s best interests. Parents emphasised quality of life and to reduce suffering and harm . However, only one study explicitly stated symptom management was given in conjunction with cancer-directed therapy . It cannot be assumed that parents did not engage with symptom management, more that studies did not clearly identify this. A good parent continued cancer-directed therapy to cure even when parents realised their child may die. The need to continue cancer-directed therapy could be underpinned by hope. Hope for a cure enabled parents to pursue cancer-directed therapy even at the expense of the child’s suffering.
The involvement of the child’s wishes is likely to be dependent on age and cognitive ability. Protection was a core component of being a good parent  and in some instances parents my protect their child from the full extent of the seriousness of the situation.
In the early 2000s the internet and use of social media platforms became more established. Nowadays many childhood cancer diagnoses have parent-led social media pages on platforms such as Facebook, Instagram and Twitter with a community that share personal knowledge and experience. Furthermore, parents can research treatment options and clinical trials internationally empowering them to explore treatment options beyond what their child’s clinician offers which was seen in some studies [30, 33].
Parents are faced with making complex treatment decisions when their child has a poor-prognosis childhood cancer. Their values can contain conflicting preferences in opting for cancer-directed therapy. Research has shown regret is less evident in parents who trust their child’s oncologist, have concise prognostic information, and are involved in the decision-making process . This reinforces the need to provide adequate support in the decision-making process. Treatment decision-making becomes complex when there is no standard of care treatment protocol resulting in the potential for parents to make multiple repeated treatment decisions as their child’s condition changes. Understanding these parent values and preferences and how they inform treatment decision-making provides the basis for developing support tools such as decision aids to support parent treatment decision-making and enhance discussions between parents and healthcare professionals.
Patient Public Involvement Consultation Discussion
The definition of values and preferences resonated with parents, but the individual meaning was seen as subjective to each parent. For example, what one parent may define as suffering another parent may not. The need for parents to define their meaning of a preference may support decision-making discussions with healthcare professionals in clinical practice. The group saw preferences as the trade-offs parents made to prioritise what they valued most. For example, one parent spoke of prioritising prolonging life but in doing so this may increase suffering resulting in conflicting preferences.
The complexity of decision-making was hard to define. For example, the emotion of decision-making was lacking, and the literature was ‘sanitised’ as a definitive way of how parents made decisions but, it is not linear and difficult to articulate. One study alluded to the emotional component of making treatment decisions . Parent emotion is huge in decision-making and one that the group felt was not fully addressed within the literature.
The values presented were an accurate perception of decision-making in poor-prognosis childhood cancer, but the richness and depth of the complexities of this decision-making was not captured possibly due to the topic sensitivity. The group acknowledged limitations for example journal word restrictions, or the data collection methods used which could inhibit the understanding of these complexities. For example, the use of questionnaires for a sensitive topic felt inappropriate and data produced during interviews is dependent on the trust built between parent and researcher particularly if there is no prior relationship.
The group spoke of a constant shift in parent values and preferences relevant to the situation. How a parent defines these values and preferences is not constant through time but changes as the situation develops depending on their child’s clinical condition and treatment decisions to be made. This was acknowledged in a shared decision-making framework where values and preferences are not seen as stable, but change based on parent capacity and reflection . The group represented this shift as a weighing scale, the options parents have at each decision point with the compromises (preferences) required to make that decision. Parents spoke of this shift being underpinned by a constant feeling of pressure, needing to do the right thing for their child, not wanting to let their child down and the uncertainty and fear that their child may or is dying. This related to the underpinning factors of hope for a cure, fear of their child dying and uncertainty.
The language used within the literature caused concern. Words such as “fighting” were seen in a negative context like a parent going to war. The group had experienced parents using words like fight, battle, winning and losing in clinical practice. This language does not support parents in their “cognitive shift” and adjustment to the situation.
Parents would regret their decisions if their child had died as an outcome, was the consensus of decisional regret. As a result, retrospective study designs could produce biased findings and not be a true representation of parent decision-making at the time of making those decisions. A more accurate representation would involve parents at or just after the time of making a decision whilst the decision outcome is unknown. The group felt parents would value prospective study designs which provide opportunity to talk through their decision-making processes in real time. They did not feel strongly that this approach would add burden to parents.
One study included parents whose child was between 1–24 years old at the time of death . This study did not provide details on how old the child was at the time of receiving treatment nor were the results broken down by age groups. Although all relevant data were extracted it is not known whether this was relevant to those under the age of 18 years.
There was a lack of father involvement across the studies. There is a need to increase the participation of fathers in research such as this to further explore whether there are gender differences in the values and preferences which underpin treatment decision-making. One research study suggested there were differences .
The literature on decision-making acknowledges rational, descriptive, and emotional processes in decision-making. The parent and carer group provided consensus that parent emotion in treatment decision-making had not been addressed fully in the literature. Emotion can be difficult to articulate which might be the reason why there is limited acknowledgement of this in the literature.