Abstract
As parents process the devastating news that their child has been diagnosed with cancer, they enter a world where they are faced with making many complex decisions. Whilst previous research has focused on how healthcare professionals may support parental decision-making, limited attention has been given to how parents may turn to their social support networks for help. This hermeneutic phenomenological study explored what it means for parents to be supported by ‘significant others’ with decision-making, and how this enhances our understanding of parents’ experiences at an incredibly difficult time. During interviews, six parents of children with cancer created ecomaps of their social support networks and identified decisions that they had made. This prompted in-depth conversations about their experiences of being supported in decision-making by these networks. The findings of this study illuminate a loss of confidence that parents may experience when their child is diagnosed with cancer, and the critical role that ‘significant others’ may play in shaping parents’ confidence. Interpreting parents’ stories through the philosophical lenses of Heidegger and Ricoeur promotes understanding that parents may need support to maintain and renew their identity as decision-makers, assert and release control of decision-making, and trust and challenge themselves and others in decision-making. Rather than depending on others to take over and make decisions on their behalf, parents feel supported when others offer ‘solicitude’ by empowering them to confidently advocate and make decisions for their own child.
Background
The clock is ticking. It deafens me. They are saying that our child has cancer, Oh my God, my child has cancer … The clock ticks, but time has stopped, everything has stopped. We are lost at sea … … Dropped in the deep end.
These words form the opening verse of the crafted poem devised from the findings of this study, evoking the devastation that parents experience when they are told that their child has cancer. Whilst unimaginable to many of us, the lives of parents of approximately 3,755 children and young people every year in the United Kingdom (NHS England, 2021) are shattered as they enter this childhood cancer world. Childhood cancer includes blood cancers and solid tumours, and treatment varies according to the type and stage of cancer. Although childhood cancer is rare, and survival rates have improved over the past 50 years, it remains the leading cause of death in children aged 1–14 years (Cancer Research UK, 2023). Understandably, a cancer diagnosis is life-changing for a family.
As parents find their feet in this world surrounded by new people using unfamiliar language, they face making many decisions. These relate to medical care and also to decisions that relate to life beyond the hospital (such as whether their child should continue to attend nursery/school). Previous research has comprehensively explored how healthcare professionals may support parents with medically focused decision-making (Coyne et al., 2014; Pyke-Grimm et al., 2006), but less is known about how parents may turn to their ‘significant others’ when they are faced with a wide range of decisions. Definitions of ‘significant others’ have been explored by Thoits (2011) and Jestico, Schutz, et al. (2023). Here, we define this concept as a self-defined fluid group of people who constitute a person’s social support network including family members, friends, neighbours, and other important relationships.
Whilst previous research has not explicitly set out to explore how ‘significant others’ support parental decision-making within the context of childhood cancer, a number of studies exploring parents’ support needs in relation to childhood cancer decision-making have acknowledged the role that ‘significant others’ may play. Several studies have explored factors that impact parents’ decisions to abandon treatment (Israëls et al., 2008; Mostert et al., 2014; Sitaresmi et al., 2010; Yeh et al., 1999) and have found that people within the parents’ communities (extended family, religious communities, friends, other families of children with cancer) influence these decisions. Other studies, focused on more specific decisions about treatment or supportive care, suggest that parents may seek support from similar members of their community. For example, H-Yazdi and Meadows (2021) found that when deciding whether their child should receive proton beam therapy, parents often turned to other parents of children with cancer for advice. Blakeley et al. (2000) focused on parents’ decisions about what type of central venous access device their child should have inserted for treatment and found that they often discussed this with family members. However, Stewart et al.’s (2012) research, focused on major treatment decision-making, concluded that parents tend not to involve their social network in these decisions.
Other research has focused on how decisions are made within specific family compositions. Kelly and Ganong (2011) explored how parents who no longer live together make treatment decisions for their child with cancer and found that step-parents may play a role in this process. Huang et al. (2008) focused on the experiences of single parents and found that relatives and friends may offer support although the parents felt that decisions were ultimately theirs to make alone.
Our literature review synthesised research to interpret how this support from ‘significant others’ may be manifested (Jestico, Schutz, et al., 2023). This identified two overarching themes in relation to how ‘significant others’ may support parents: Dimensions of Decision-Making Support and Expectations of Decision-Making Support.
Dimensions of Decision-Making Support included three sub-themes. The first of these was information support which demonstrated that parents may rely on ‘significant others’ to gather and assimilate information on their behalf which then assists them in making informed decisions. Parents may also learn from witnessing other people’s stories and experiences. The second sub-theme was emotional support which suggested that having an emotionally supportive network could give parents emotional space to make decisions. Finally, instrumental support may be offered in the form of practical help and financial support.
The second theme of our review identified that parents’ experiences of support are influenced by their expectations of their own role, and others’ roles in decision-making. Often parents feel their role is to advocate for their child, and therefore it is only for them to make these decisions. However, this responsibility may feel burdensome resulting in parents losing confidence in their decision-making. Some literature demonstrated that parents subsequently expected their ‘significant others’ to help them. Parents have conflicting experiences of this support, and there is a delicate balance between feeling that others were helping rather than interfering. Kelly and Ganong (2011, p. 357), for example, expressed that ‘significant others’ need to ‘tread lightly’ and learn when to ‘step in’ and when to ‘step back’.
The literature demonstrates a fine line between supportive and unsupportive behaviours from ‘significant others’ and suggested that unique personal, social, and cultural contexts of parents may influence what they perceive as supportive. However, the limited understanding around this topic informed our study’s aim to gain understanding of what it means for parents to be supported by ‘significant others’ when they are faced with making decisions about their child’s cancer care.
Methodological Approach
We adopted hermeneutic phenomenology as the study methodology in order to facilitate an illumination of the meaning of parents’ experiences, thus meeting the study aim. Hermeneutic phenomenology is well suited to studies that have an ontological focus (Laverty, 2003), seeking new understanding about what it means to be, rather than an epistemological intent to gain new knowledge (Bradbury-Jones et al., 2009). This ontological focus was appropriate for this topic which reflects an existentially threatening moment in a family’s life.
This ontological focus required commitment to the philosophical underpinnings of hermeneutic phenomenology throughout the study (Laverty, 2003). We aligned all research decisions during the study to hermeneutic principles (e.g., our decision about data analysis approach was grounded in Heideggerian philosophy). We maintained the philosophical thread by engaging with Heidegger and Ricoeur’s works to interpret the data.
In addition, reflexivity is an essential component of hermeneutic phenomenology to demonstrate transparency about how interpretations are formed (Crowther et al., 2017). Reflexivity was fundamental to this study; EJ engaged in a constant process of reflexive activities throughout including journaling, creating her own ecomap, and conversing with supervisors and others interested in the topic. EJ explored her positionality as a children’s cancer nurse and as a friend to parents facing decisions about their child’s health. Both positions influenced the choice of research topic at the start of the study. EJ also explored her positionality as a bereaved mother, her son having been stillborn shortly before the study commenced. This played a profound role in the interpretive stages of the study as did the unexpected death of EJ’s mother during data collection. For EJ, the process of reflexivity was intensely iterative. As much as her own lived experiences informed the interpretations, the interviews with parents and philosophical readings also shaped understanding of her own life. This iterative reflexivity led to the identification of ‘confidence’ as the study’s central phenomenon as EJ found resonance between the parents’ experiences and her own experiences of decision-making during life-defining moments.
Ethical Considerations
Ethics approval for this study was obtained from Oxford Brookes University’s Faculty of Health and Life Sciences research ethics committee (approval reference: F.03.2019.22) and from a National Health Service Health Research Authority research ethics committee (London-Stanmore REC; approval reference: 21/LO/0121). Concern for participants’ well-being was paramount, particularly as participants would be talking about challenging life events. Sensitivity to their vulnerability was extremely important, along with commitment to the principles of informed consent and confidentiality. Pseudonyms are used to preserve confidentiality.
Gathering Parents’ Stories
We recruited parents from across the United Kingdom by advertising the study through specific children’s cancer centres and on social media platforms supported by UK children’s cancer charities. Six parents of children who were receiving care for cancer volunteered to participate. In line with the principles of hermeneutic phenomenology, our aim was to generate rich interpretations and illuminate each parent’s unique story rather than recruit large numbers of participants and arrive at generalisable conclusions. Smythe and Spence (2020, p. 2) suggest that the number of participants should be guided by the researcher’s ‘sense of enough’, and after six interviews we were confident that we had gathered data of sufficient depth and richness.
The parents were from a range of geographical locations within the United Kingdom. Their children had a variety of cancers including acute lymphoblastic leukaemia, Langerhans cell histiocytosis, and neuroblastoma. At the point of undertaking interviews, their children were aged between 3 and 11 years, and the time since diagnosis ranged from 2 months to 40 months. All six parents were part of a married couple and most families had other children living at home as well as the child with cancer.
Description of Decisions Articulated by Parents
The next stage involved gaining insight into who the parents felt were ‘significant others’. An ecomap was created by EJ using the whiteboard function to draw as the participant described the relationships that they felt were important. Ecomaps are used to understand a family’s social support system (Hemphill & Dearmun, 2010) and provide a visual representation of how a family may interact with its self-identified community (McCormick et al., 2008). An example can be seen in Figure 1 which was based on a traditional ecomap but adapted for use on the online platform. Each participant’s ecomap varied significantly and demonstrated their unique and complex social network (Jestico, Taylor, et al., 2023). Example of ecomap created during interview and then used to inform philosophical interpretations
Constructing these ecomaps generated rich conversation and led to in-depth discussion about how people had supported/not supported parents to make particular decisions. We focused on two or three key decisions that the parents chose to talk about in more depth, and it is these in-depth conversations that we focus on in this paper.
Interpreting the Stories
Heidegger emphasised the importance of understanding our whole being within the dynamic context in which we exist, and therefore attempting to reduce data into codes or parts would be incongruous with this approach. Rather than breaking down data during the analytic process, we focused on interpreting and understanding the whole, and the heart, of parents’ experiences, and, guided by Crowther and Thomson’s (2020, p. 6) approach, we crafted stories, considered what was beneath the surface, and made the ‘interpretive leap’.
The interpretive process was iterative and started during the interviews. As participants relayed their experiences, EJ’s interpretations began and follow-up questions developed these ideas. EJ wrote reflections immediately following each interview including documenting resonating and surprising moments. EJ listened to recordings and re-read transcriptions multiple times continuing reflective note-writing whilst thinking: ‘What is going on here?’. SS and TF also read transcriptions and recorded reflections independently. EJ’s initial interpretations indicated that parents’ confidence in decision-making was impacted by their child’s cancer diagnosis; following extensive discussions with SS and TF, this was distilled to the phenomenon of ‘shaping confidence’. Conversations with others and ongoing reflection resulted in a pathway that encompassed confidence within the constructs of maintaining and renewing identity, asserting and releasing control, and trusting and challenging others.
During this time, EJ crafted stories from each interview. In some cases, EJ wrote several stories from an interview, helping to refine the phenomenon. Once we had arrived at the phenomenon of ‘shaping confidence’, EJ decided which parent’s account resonated most strongly with each aspect of the pathway and focused stories around this. Following Crowther et al.’s (2017) guidance, EJ identified relevant parts of the interview transcripts and arranged them into chronological order to tell the stories. These were then read aloud to peers to check for engagement and sense-making. The full crafted stories can be found in the supplemental material.
Whilst each story illuminated how parents’ confidence had been shaped by ‘significant others’, the story of their lost confidence around the time of their child’s diagnosis was absent. EJ returned to the transcripts and made a note of poignant phrases that resonated with this. She then crafted a ‘choral’ poem (as per Green et al., 2021). This poem synthesised the parents’ voices before the diversity of experiences was unfolded by the crafted stories and interpretations. During this period, Heideggerian and Ricoeurian philosophies informed the interpretive leap. Engagement with these philosophies started with understanding their fundamental premises.
Heidegger was particularly concerned with the unique nature of human existence which he referred to as ‘Dasein’ – ‘being-in-the world’ (Heidegger, 1927/2010, p. 7). ‘Dasein’ exists in the world and interacts with this world (Mulhall, 2005). We are who we are because of the world that we live in, and Heidegger meant ‘world’ in geographical, cultural, and temporal senses. He also considered this to be a social world because ‘Dasein’ inhabits a world that is inhabited by other beings like itself (Mulhall, 2005). We exist with others; we are ‘Mitsein’ (‘being-with’) (Heidegger, 1927/1962). Other people therefore have a fundamental influence on who we are.
Ricoeur drew on Heidegger’s concepts of ‘Dasein’ to explore the concept of identity (Simms, 2003; van Manen, 2014). Critical to his discussion is the question of the extent to which our identity is permanent or changeable over time, and he concluded that we have a kind of sameness-in-difference (Ricoeur, 1990/1992). As Simms (2003, p. 102) explained: ‘I am the “same” person I was twenty years ago, even though I am so much different’. This sameness-in-difference is important. Our stable, unchanging sense of identity allows us to feel grounded in who we are, so we need to maintain this. However, changes within our identity are inevitable so we also need to be open to renewal. This sense of sameness-in-difference allows us to accept that stability and change are not mutually exclusive, and that we can allow our identity to evolve without the threat of losing our core character (Flaming, 2005). Building on Heidegger’s concept of ‘Mitsein’, Ricoeur proposed that our individual lives are always entangled with others’ lives (Simms, 2003) and that our identity is therefore informed by our relationships and interactions with others.
These foundational ideas provided the basis for understanding the study’s findings; accordingly, we saw each participant as a unique ‘Dasein’, with identity shaped over time by their social world (represented in their ecomap). Engaging with connected philosophical notions (e.g., ‘solicitude’) developed our understanding of how ‘significant others’ may support parents’ decision-making.
Interpretive Findings
The findings will now be explored using participant quotes, and our interpretations framed around philosophical notions. Starting with an exploration of ‘losing confidence’, our findings then navigate a pathway where we illuminate that ‘significant others’ can shape parents’ confidence to maintain and renew their identity as decision-makers, assert and release control of decision-making, and finally learn to trust and challenge themselves and others. Rather than describe these as discrete themes, we conceptualise these as interdependent aspects of the phenomenon, twisting along one continuous pathway (Figure 2). To support the concept of one overarching pathway, we continue to integrate verses of the crafted poem throughout our findings . Interpretive pathway
Losing Confidence
I am a terrible parent. How did I notice that something was so terribly wrong? I am a terrible parent. I should have spotted this sooner. I am lost at sea … … Dropped in the deep end.
This second verse of the crafted poem illuminates a profound sense of lost confidence that parents experienced in themselves at the time of their child’s cancer diagnosis. For each parent, this moment represented a significant shift in their experience and perspective of the world and therefore who they were as ‘Dasein’. This loss of confidence surrounded three aspects of becoming a parent of a child with cancer: the lead up to and shock of diagnosis, taking on new parenting roles such as managing medication, and absorbing complex medical information.
Rob’s story around the diagnostic process exemplified this shift in confidence. He and his wife, Ella, deliberated over the lump that they had noticed in Charlie’s side, trying to balance the acknowledgement that something was not right, with not wanting to worry over something that might be nothing. As the situation unfolded, he articulated: We wondered if we were being overly sensitive … But then when we were told the diagnosis, one of the first feelings was ‘I know my child, how can I not spot when something so bad is happening’.
This moment of diagnosis, of facing the reality that their child has cancer was discussed by all parents. At such an existentially terrifying moment, Darbyshire and Oerther (2020) have proposed that whilst parenthood is often framed as a set of effective/ineffective strategies, times like this demonstrate that parenthood cannot be reduced to a rulebook. What may have worked in the relationship between parent and child when the child was well may no longer be effective. Parents are presented with new skills that they must adopt within their role, such as administering medicines. The responsibility of undertaking this, combined with the understandable terror they are experiencing, may redefine their sense of parenthood and their identity – highlighting a moment of Ricoeurian ‘difference’. It is unsurprising that this is experienced as a lack of confidence.
Kerry spoke about her experience of administering medicines to Harry: It was horrible … it was traumatic … We wrapped our little baby Harry up in a towel so that he couldn’t punch out … one of us would do the medicine, the other one would hold him …
These moments may undermine parents’ confidence in their parenting ability. Something seemingly simple becomes complicated when the child does not want to take medicines. However, the risk of their child not taking these medicines is significant. These may be an integral part of their child’s lifesaving treatment or may be protecting them from severe chemotherapy side effects. Parents may feel enormous pressure as they must find ways to persevere.
In addition to facing their child’s life-threatening diagnosis and needing to learn new skills and parenting strategies, parents also discussed the need to absorb complex medical information to be able to make decisions. The early days were an absolute whirlwind of information, we had to upskill very quickly in an area of biology that I didn’t actually know very much about. (Martin)
The ‘whirlwind’ that Martin articulated was experienced by all participants. All acknowledged the speed with which they found themselves thrown into the situation, and that they were in a world where they had to rapidly learn the science and language of cancer, alongside processing the emotional trauma of the diagnosis. Their confidence in their knowledge, parental instinct, and parental strategies was low. Combined with the enormous emotional trauma and fear that their child may die, they experienced a loss of confidence in their being-as-a-parent.
Shaping Confidence to Maintain and to Renew Identity
We don’t know what we are facing, We fear what we don’t know. We can only imagine what is coming. We are scared to death. We are lost at sea … … Dropped in the deep end.
The existential fear that is explicit in this verse and parents’ profound loss of confidence had a clear impact on their identity as a parent. Their sense of ‘sameness-in-difference’ became critical as they navigated between the need to maintain their parenthood identity yet also accept that life was now different.
Being a parent was seen to be fundamental to each participant’s life and identity (‘Dasein’). However, this was not sufficient in terms of who they were or who they wanted to be. They were fundamentally concerned with being a good parent; maintaining and preserving this ‘sameness’ of their identity was important. Being a good parent revolved around advocacy and a motivation to make the right decision, as Tom articulated: We are his parents, and we will make the decision that is best for him.
Martin similarly emphasised that decision-making was a core part of parenting: It’s very much between Helen and I to make the decisions.
However, what parenting meant and felt like abruptly changed when their child was diagnosed with cancer. They were now parents of children with cancer. Everything had changed and their identity as a ‘normal’ parent was shaken. Their world had crashed down, and with that came a loss of confidence in being a good parent. However, they had a strong desire to reclaim that identity of being a good parent so now needed to be a ‘good parent of a child with cancer’, which still meant being an advocate for their child.
Understanding how parents identified themselves was significant, in terms of advocacy that fuelled the identity of being a good parent. Being able to make decisions was fundamental to their confidence. It became apparent that ‘significant others’ could have a key influence in further shaping parents’ identities.
A fundamental part of Tom’s identity was his faith, and the church community featured on his ecomap. His faith has been fundamental to him throughout his life and was his ‘sameness’. So, whilst his identity had changed to being a parent of a child with cancer, his faith remained. His church community enabled him to maintain that aspect of his identity but more than this, connections built within that community also helped him to renew his identity as a parent of a child with cancer. Tom spoke about a father from New Zealand whose son also had leukaemia. Tom explained that this relationship had given him reassurance as they would discuss the various decisions that they were faced with, and Tom found that he was gaining confidence that he and his wife were making the right decisions. This father was affirming to Tom that he was indeed a ‘good parent’, which was significant in shaping Tom’s confidence as a parent of a child with cancer. In this community, he was surrounded by people who were ‘aligned with our way of thinking’. Church leaders said that Tom and his wife should follow medical professionals’ advice rather than ‘paddle their own canoe’ and they did so.
This provides an example of what Ricoeur refers to as ‘acquired identifications’, where we identify ourselves with a community that we feel we belong to (1990/1992). By connecting with people within the church community, Tom recognised that they were aligned to his way of thinking. His stable identity and evolving identity – sameness and difference – were collectively being reinforced, and therefore he could see how he should respond to the decisions that he was being faced with.
Tom’s story was perhaps unique in terms of having a specific community network that influenced his identity and decision-making. However, ‘significant others’ played a similar role in other participant’s identities. Kerry talked about the influence of her parents and how this shaped her understanding of her own decision-making: I’ve learnt to be like this from my parents. My Dad always taught me ‘accept nothing, challenge everything’ … And my Mum … She would always speak up, she was never scared of anything. So I’ve learnt from both of them, but I’ve evolved and become me … Every time I challenge things at the hospital, I know that I am right to speak up.
The role that social groups played had its boundaries, and crossing these was the difference between parents feeling supported and unsupported. This was particularly evident in Tom’s story, where he identified that some people (outside of his church community) tried to give unsolicited advice: Sometimes other people in our life like friends and family think that they know more, they make suggestions to us… it’s not helpful. But it’s not a decision for them to make, it’s our decision. It is for us to stand on our own two feet and make it.
Heidegger proposed that the basic structure of human existence, of ‘Dasein’, is ‘care’ (‘Sorge’) (1927/1962), meaning that as humans we are interested in, and question, our being (Spier, 2019). From this overarching concept of ‘Sorge’, Heidegger focused on how we care for other people – ‘Fürsorge’, which is often translated as ‘solicitude’. He proposed two extreme possibilities of this: ‘leaping-in’ and ‘leaping-ahead’: Solicitude can take away ‘care’ from the Other and put itself in his position in concern: it can leap in for him … The Other is thus thrown out of his own position; he steps back … In such solicitude the Other can become one who is dominated and dependent.
(Heidegger, 1927/1962, p. 122)
By ‘leaping in’, people try to help by taking over and act on behalf of the person in need. The person is disempowered to act for themself. The alternative, Heidegger suggested, is ‘leaping-ahead’: In contrast to this, there is also the possibility of a kind of solicitude which does not so much leap in for the Other as leap ahead of him … not in order to take away his ‘care’ but rather to give it back to him authentically. (Heidegger, 1927/1962, p. 122)
Here, the person is empowered to freely act in an authentic way. Rather than ‘leap in’ to help a person in the current moment, ‘leaping-ahead’ recognises that the person needs to be empowered to take responsibility for themself.
For Tom, when others had tried to give unsolicited advice, they were trying to ‘leap in’ and take over. This undermined Tom being able to authentically decide for himself and his confidence as an advocate and decision-maker. From a Ricoeurian perspective (1990/1992), the people who were trying to ‘leap in’ were not those from the community he felt he belonged to; they were not aligned to his way of thinking.
It is therefore evident that ‘significant others’ may be able to shape (either by enhancing or undermining) parents’ confidence to maintain and renew their identity as being a good advocate and decision-maker for their child.
Shaping Confidence to Assert and Release Control
I stand in a whirlwind of information, Yet still I do not know enough. How can I know what is right? Is this my decision to make, or is it theirs? I am lost at sea … … Dropped in the deep end.
Despite decision-making being a fundamental part of their identity as parents, parents did not feel that they always had control to do this. They needed confidence to negotiate the delicate balancing act between knowing when to advocate for their child and assert control, and when to release control to let the medical team to act in their child’s best interests (‘Is this my decision to make, or is it theirs?’). This need to release control impacted on their identity as advocate for their child.
During the pre-diagnosis period, all parents discussed the need to assert control as they recognised that something was wrong with their child and made the decision to access medical help. Several talked about having to repeatedly return to their GP or hospital to have their concerns acted upon: She’d had a virus, so they thought maybe it was a post-viral aching, but I just felt like there was something more. I made them refer me to the hospital. I think the GPs thought that I was a massive pain. (Maggie)
But then, at diagnosis, there was a sense that everything changed. Parents talked about this period as there being ‘no decision to be made’ in relation to treatment decision-making. Tom said: We just agreed with everything that they offered.
Rob similarly expressed lack of control: To us, there was never a decision, and he might not, if he remembers any of it, he might not forgive us for it, because they might have to remove his kidney which will affect him for the rest of his life. But we’d rather that over the alternative.
Rob knew that consenting to treatment could lead to life-changing consequences, but the alternative of refusing treatment would undoubtedly result in his son’s death. Consent was the only viable option.
Ricoeur considered that on one hand we are able to make choices about our actions (the ‘voluntary’), but on the other hand we exist within a particular context and world where many things are beyond our control (the ‘involuntary’) (Simms, 2003). So, in simple terms, each parent had ‘voluntary’ moments (like voicing their concerns pre-diagnosis) but when their child was diagnosed with cancer, they were placed in a world where decisions were beyond their control – they had a stark encounter with the ‘involuntary’.
This lack of control relates to their identity. The shift from being a ‘parent’ to a ‘parent of a child with cancer’ was associated with a loss in their confidence in their parental expertise. They lacked knowledge in how to care for their child who now had cancer and so handed decision-making control to healthcare professionals. This allowed the professionals to ‘leap in’ and make decisions on their behalf. At that moment, they did not know how to ‘fix’ things themselves and therefore saw that it would be in their child’s interests to release control to healthcare professionals: We have to completely put all of our trust in the specialist because this isn’t something that we know how to deal with … it’s completely out of our control. (Maggie)
When parents talked about this loss of control, they rarely spoke about ‘significant others’. Parents did not see others as being directly involved at this time and did not seem to see this as problematic although silent acknowledgement from others that parents had handed over control and now lacked agency was appreciated. However, a narrative emerged in which ‘significant others’ could support parents following diagnosis when parents needed to re-assert control.
Both Maggie and Saira experienced moments when they felt they had more control around treatment decision-making that was not heard in other parents’ stories. Maggie’s daughter, Rosie, had not responded to the first-line treatment for her cancer and so was no longer on the standard treatment protocol. Similarly for Saira, there was a lack of evidence around the next steps for Aria’s treatment. In the absence of a clear treatment pathway, Maggie and Saira found themselves becoming more involved in the decision-making process.
At this stage, Saira actively sought information (from networking with others) so that her decisions would be as rooted in the evidence as possible. Maggie similarly talked to others about the complex decisions that she was faced with. ‘Significant others’ can therefore support parents in these situations by providing information or being a sounding board.
The advice of one of Saira’s friends in the early days following Aria’s diagnosis gave her confidence that she could assert control and challenge plans when necessary: A friend said to me: ‘You’re not stupid, so you will understand everything and if you don’t understand something it’s because either they haven’t explained it properly, or because it doesn’t make sense, so don’t be afraid to challenge stuff’. (Saira)
This friend empowered Saira to have confidence to take control, which is a good example of the ‘leaping-ahead’ that ‘significant others’ can offer, in contrast to the ‘leaping-in’ shown by healthcare professionals. Networking with others and seeking information, combined with empowerment from her friend, meant Saira could confidently re-assert control of decision-making when necessary.
Whilst Maggie and Saira were the only parents who discussed asserting control with decisions relating to cancer treatment, all parents experienced points when they were able to assert control in relation to other decisions. Several, for example, made the decision to carefully control the family’s environment to protect their child. Martin explained how they had worked out a system of managing infection risk: The hospital gave us the black and white facts and then we had to find our path about where we drew the line. We’d had some excellent support from our close friends – David and Jane. We decided quite quickly that we should include them in our bubble. So we had an open discussion with them: ‘we want to include you, but please be mindful that if you have any kind of illness, we won’t be offended, stay away’.
For Martin, and indeed for most participants, ‘significant others’ needed to respect the control that the parents had now asserted. By respecting the rules around infection risk, others were ‘leaping ahead’ in their solicitude towards the parents and therefore empowering them to have the confidence to re-assert control and reclaim their role as advocate for their child.
Shaping Confidence to Trust and to Challenge
The decisions loom large, We are overwhelmed. We doubt ourselves … We stand alone. We are lost at sea … … Dropped in the deep end.
Heidegger’s notion of solicitude has so far been applied to the discussion around how ‘significant others’ can support parents with making decisions by proposing that people may ‘leap in’ or ‘leap ahead’ in their care towards parents. Ricoeur also discussed solicitude but for him, this was based on the concept of friendship (1990/1992). He proposed that friendship should be considered a mutual relationship and then considered the relationship between solicitude and suffering. He suggested that suffering happens when our capacity to act, or being able to act, is reduced or even destroyed; for example, the suffering associated with having a child diagnosed with cancer reduces parents’ confidence in decision-making. At times like this, Ricoeur suggested, a friend may offer sympathy and compassion. Through this benevolence the power balance between the friends initially becomes unequal – what is usually a mutual relationship, pivoting on a balance point, tips over into an unequal reciprocity. The person suffering receives sympathy but cannot give back in the same way. Rather, Ricoeur suggested, they learn to give back by sharing their vulnerability with their friend – this tips the balance back and reestablishes an equal and mutual relationship. For Ricoeur, solicitude is truly demonstrated in these situations: This is perhaps the supreme test of solicitude, when unequal power finds compensation in an authentic reciprocity in exchange, which, in the hour of agony, finds refuge in the shared whisper of voices or the feeble embrace of clasped hands. (Ricoeur, 1990/1992, p. 191)
By considering both Heidegger’s and Ricoeur’s understandings of solicitude, further interpretations can be developed around the parents’ stories in the context of shaping confidence to trust and to challenge.
Trusting and Challenging Healthcare Professionals
Parents released control of decision-making to healthcare professionals when their child was diagnosed, allowing them to ‘leap in’, and placing almost blind trust in the healthcare professionals. They had to trust that the healthcare professionals would do what was best for their child. This is seen in Rob’s story: We agree with the medical decisions because we’re not doctors, and obviously they’re not going to advise us, we’d hope, on anything that’s not in Charlie’s best interests. (Rob)
But trust was not unconditional. Before Kerry’s son was diagnosed with cancer, he was misdiagnosed. Her trust in the medical team was already compromised. Whilst she did trust the team in terms of cancer treatment, this trust did not extend to all medical decision-making. She spoke about times when she had challenged the medical team’s decisions, such as the prioritisation of the lumbar puncture list and the allocation of her son to a bed in a bay rather than a cubicle.
Kerry explained that she felt she was challenging these decisions in opposition to her family: I see their disapproving faces. And I know they don’t agree with me, they wouldn’t have backed me up, which is kind of all the more reason why I speak up in the moment because I know if I went home, that people would fly off and say ‘oh well, you should be grateful for the NHS’ and they would try to talk me out of speaking up.
Kerry did not want to give her family the opportunity to ‘leap in’ and take control, yet neither were they ‘leaping-ahead’. She needed to make the decision for herself. Kerry felt judged for her decision to challenge hospital staff, yet for her this was secondary to the importance of protecting her son. Similarly, no solicitude was evident in a Ricoeurian sense; relationships in those moments were not equal – no sympathy was offered from Kerry’s network in this context, and she therefore felt she could not share how she was authentically feeling. Without solicitude, Kerry felt alone.
Trusting and Challenging ‘Significant Others’
There were several examples of how parents trusted and challenged their ‘significant others’. Maggie discussed complex decisions that she had faced when it became clear that her daughter Rosie would need a bone marrow transplant (BMT) in a city far from home. She became friends with a father of another child at the BMT unit and, trusting his advice, she made the decision to leave her elder daughter, Flora, at home with her Mum whilst Rosie had her transplant. Maggie’s trust in her Mum to care for Flora allowed her to release control of Flora’s care for a while, and facilitated this decision. In that moment, she was allowing her Mum to ‘leap in’ and take over care of Flora on her behalf. At this immensely vulnerable moment in Maggie’s life, having somebody to ‘leap in’ was helpful. As Maggie shared her vulnerability, her Mum was able to support her, enabling Ricoeurian and Heideggerian solicitude to unfold.
Tom placed great trust in his church community. The church’s advice was to follow the advice of the medical teams, so Tom’s trust in this community reinforced his trust in healthcare professionals. However, Tom spoke about his second cousin who had advised him to seek homeopathic medication for his son which he rejected. Here, a line had been crossed with what Tom perceived as interference and an assault on his role as advocate. In that context, the second cousin had ‘leapt in’, which was unhelpful and demonstrated a lack of Ricoeurian solicitude. As Smythe (2003, p. 201) wrote, ‘It takes skilled judgement to know when to leap in and when to leap ahead’ (Smythe, 2003, p. 201). Where Maggie’s Mum had got that judgement call right, Tom’s second cousin was not attuned to whether Tom wanted or needed this ‘leaping-in’. Although Tom placed significant trust in healthcare professionals, his trust in other people was not universal and he challenged them when he needed to.
Trusting Oneself as a Parent
Learning to trust oneself lay at the heart of all the parents’ stories. However, Rob’s experience illustrated this most clearly. Rob’s story started with he and his wife Ella noticing the lump on Charlie’s side. Rob explained that they were panicking but also doubting themselves. On one hand, they were terrified that the lump might be something terrible, but on the other, they were worried they were being over-sensitive and that there was nothing there. They turned to Ella’s parents, with whom they had a close relationship. Ella’s parents responded by simultaneously de-escalating Rob and Ella’s worst fears: ‘They tell us not to panic, perhaps it’s nothing, maybe it’s a hernia’, but also reassured Rob and Ella that they were right to seek medical help, therefore assuaging their worries of being over-sensitive. Rob and Ella were almost inviting her parents to ‘leap in’ and tell them what to do, but they ‘leapt ahead’ by assuring Rob and Ella that their instincts were right, which enhanced their confidence in their parenting skills. Ricoeur’s concept of solicitude also shines through – Ella’s parents recognised the anxiety and fear that Rob and Ella were experiencing and were there for them in that moment. This allowed Rob and Ella to authentically share their feelings of fear, whilst also being reassured that they could trust their instincts.
Later, Rob had more confidence to trust himself with decisions. He and Ella were faced with deciding whether Charlie should have a gastrostomy tube inserted. Rob sent a message out to a network of other dads of children with cancer and the responses he got reassured him they were making the decision that was best for Charlie. Those messages reassured him to trust himself. Responding to the question about whether he had discussed this decision with anybody else, Rob said that they had mentioned it to Ella’s parents: We tell them and they say ‘that makes sense, this should be better for him’, so it’s less of an asking, more of a telling. (Rob)
This demonstrated the shift between those early days where they actively sought advice from Ella’s parents, to later where they were keeping them informed but did not need more advice. ‘Leaping ahead’ in the early days had empowered Rob and Ella to trust themselves, and they were now confidently making decisions that they believed were best for Charlie.
Discussion: From Solitude to Solicitude
The findings of this study have centred around the phenomenon of ‘shaping confidence’. Previous research demonstrated that parents may lose confidence in themselves to make decisions when their child has cancer (Kelly & Ganong, 2011; Stewart et al., 2012; Woodgate & Yanofsky, 2010). The crafted poem threaded through this paper has illuminated parents’ sense of being ‘lost at sea’ and feeling that they are ‘standing alone’, which aids understanding about the depth and impact of this confidence loss.
Our findings demonstrated that ‘significant others’ can shape and rebuild parents’ confidence in decision-making, and in maintaining and renewing their identity. ‘Significant others’ can shape a parent’s confidence to assert and release control of decision-making and fundamentally they can shape parents’ confidence to trust and challenge themselves and others in decision-making. At the heart of this is the need for parents to truly trust that they can identify as a ‘good parent’ and advocate for their child.
This concept of advocacy is present in previous research which identified that parents feel their role as an advocate for their child means that it is only for them to make these decisions (Huang et al., 2008; Kelly & Ganong, 2011; O’Neil, 1996; Papadatou et al., 1996). Whilst parents may turn to others during decision-making, there is a risk that support may be interpreted as interference (Liang, 2002) and an assault on their advocacy (O’Neil, 1996).
‘Significant others’ being attuned to whether parents require support as ‘leaping in’ or ‘leaping ahead’ resonates with Kelly and Ganong’s research (2011, p. 357) which expressed that ‘significant others’ need to ‘tread lightly’ and learn when to ‘step in’ and when to ‘step back’. ‘Stepping in’ may be equate to Heideggerian ‘leaping in’, which may disempower parents and undermine their role as advocate. Yet, ‘stepping back’ too far may be interpreted by parents as indifference, which leaves them feeling that they stand in solitude.
The additional lens of Ricoeur’s concept of solicitude (1990/1992) rests on the bedrock of mutual, reciprocal friendship. When ‘significant others’ offer solicitude in this way, they are able to do more than ‘leap in’ or leap ahead’. They are able to ‘be-with’ the parent, quietly acknowledge their suffering and offer compassion. By doing this they allow the parent to give back to them by sharing their vulnerability which repositions the relationships as mutual and reciprocal. We propose that by offering solicitude in this way, ‘significant others’ are able to become attuned to whether parents need or want them to ‘leap in’ or ‘leap ahead’, or perhaps stand back and simply acknowledge their situation. By ‘being-with’, allowing reciprocity of support, and becoming attuned to parent’s needs in their darkest moments, the other can offer solicitude. Through this, they shape the parent’s confidence to trust in themself as a good parent who can advocate for their child.
Implications
This study has clear implications for people who find themselves within a social network of a parent whose child has cancer. ‘Significant others’ have a challenging role to play in learning to be attuned to what parents need from them, and navigating how to offer solicitude. Further research could extend this understanding by considering the experiences of ‘significant others’ providing such support.
This study is also of significance to healthcare professionals. Understanding that parents may lose confidence in themselves to make decisions should inform care. Whilst there are inevitably times when healthcare professionals may need to ‘leap in’, it should be recognised that this may compromise parents’ sense of advocacy and efforts should be made to promote this throughout the child and family’s care pathway.
Strengths and Limitations
The quality of our study was guided by de Witt and Ploeg’s (2006) five criteria for interpretive phenomenological research in nursing.
Balanced integration was achieved by aligning all methodological decisions to the philosophy underpinning hermeneutic phenomenology (e.g., the use of ecomaps was aligned to philosophy (Jestico, Taylor, et al., 2023). Philosophy was extended throughout the interpretation of findings, balancing use of participant quotes and philosophical discussion. Detailed justification of research decisions facilitated the criteria of openness.
The critieria of concreteness is evident when findings are written in way that the reader can contextualise the phenomenon and link to their own experiences. The critieria of resonance refers to moments where the reader’s understanding of the study collide with their self-understanding, allowing them to make sense of the whole picture (de Witt & Ploeg, 2006). Conference presentations and doctoral examination have confirmed that these criteria and the phenomenological nod (van Manen, 1990) have been achieved.
de Witt and Ploeg (2006) recognise that there is no currently accepted mechanism for actualisation – the acknowledgement that the interpretation is never complete but that both writers and audiences must be open to further interpretations. We confirm that our interpretations have evolved and that they will continue to evolve and acknowledge that the journey of understanding will always be ongoing. Caputo (1987) wrote, ‘We do not aim at a conclusion but an opening. We do not seek a closure but an opening up’ (p. 294). We hope that these parents’ stories intertwined with the philosophies might facilitate an opening of conversations around this topic.
Hermeneutic phenomenology seeks to share people’s unique stories and provoke thought and conversation (Darbyshire et al., 1999) rather than generalise findings (Crist & Tanner, 2003). We have shared the stories of six parents and our interpretations, but we do not claim to represent every parent’s experience. We acknowledge that there were voices of parents that we did not hear, for example, from parents who were single as opposed to being part of a couple and parents of children with different types of cancer – the scope of this study cannot extend to represent all voices. However, we were pleased to recruit fathers as well as mothers, as their voices are often under-represented in psycho-oncology research (Robertson et al., 2019).
Conclusion
Parents may feel lost at sea and lose confidence in decision-making when their child is diagnosed with cancer. This study forged an interpretive pathway that demonstrated that ‘significant others’ can support parents by shaping their confidence to maintain and renew their identity, to assert and release control, and to be able to trust and challenge. By offering Heideggerian and Ricoeurian solicitude, ‘significant others’ are able to empower parents to trust themselves and have confidence to advocate for their child.
Supplemental Material
Supplemental Material - ‘We Are Lost at Sea’: How ‘Significant Others’ May Shape Parents’ Confidence to Make Decisions When Their Child Has Cancer
Supplemental Material for ‘We Are Lost at Sea’: How ‘Significant Others’ May Shape Parents’ Confidence to Make Decisions When Their Child Has Cancer by Elizabeth C. L. Jestico, Teresa M. D. Finlay, and Susan E. Schutz in Qualitative Health Research
Supplemental Material
Supplemental Material - ‘We Are Lost at Sea’: How ‘Significant Others’ May Shape Parents’ Confidence to Make Decisions When Their Child Has Cancer
Supplemental Material for ‘We Are Lost at Sea’: How ‘Significant Others’ May Shape Parents’ Confidence to Make Decisions When Their Child Has Cancer by Elizabeth C. L. Jestico, Teresa M. D. Finlay, and Susan E. Schutz in Qualitative Health Research
Footnotes
Acknowledgements
We would like to thank the parents who took part in this study and who so generously shared their stories. We would also like to thank Dr. Bridget Taylor who provided extensive support during the planning and undertaking of this study.
Ethical Considerations
This study was approved by the Oxford Brookes University Faculty of Health and Life Sciences Research Ethics Committee (approval reference: F.03.2019.22) and by NHS REC (approval reference 21/LO/0121).
Consent to Participate
All participants provided verbal informed consent (this was audio recorded and documented by the lead researcher) prior to enrolment in the study.
Author Contributions
EJ: Conceptualisation, methodology, formal analysis, investigation, writing – original draft, and project administration. TF: Conceptualisation support, formal analysis support, writing – review and editing, and supervision. SS: Conceptualisation support, formal analysis support, writing – review and editing, and supervision.
Funding
The authors disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: This PhD research study was partly financially supported by Oxford Brookes University.
Declaration of Conflicting Interests
The authors declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.
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Supplemental material for this article isavailable online.
References
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