Background
Parents of children with serious or life-limiting illnesses are tasked with being caregivers, advocates, and decision-makers, all while confronting their own grief. Hope can be central to this experience. Despite literature demonstrating that hope and prognostic awareness are not mutually exclusive (Mack et al. Reference Mack, Wolfe and Cook2007; Kaye et al. Reference Kaye, Kiefer and Blazin2020; Katz et al. Reference Katz, Heywood, Meyer, Scioli and Van den Heuvel2025), our experience suggests that clinicians can struggle to engage with parental hope. Clinicians may mistakenly interpret hope as a misunderstanding or denial of prognosis, and worry that parents will be unprepared when their child dies. Furthermore, clinicians might be concerned that maintaining hope enables parents to delay important decisions, continue aggressive treatments, and potentially extend a child’s suffering (Hasan et al. Reference Hasan, Widger and Sung2021; Katz et al. Reference Katz, Heywood, Meyer, Scioli and Van den Heuvel2025).
The literature describes hope in the face of serious childhood illness as dynamic and multidimensional, extending well beyond hope for cure or survival (Feudtner Reference Feudtner2009; Reder and Serwint Reference Reder and Serwint2009; Rosenberg and Feudtner Reference Rosenberg and Feudtner2016; Hill et al. Reference Hill, Nathanson and Carroll2018, Reference Hill, Boyden and Feudtner2023; Sisk et al. Reference Sisk, Kang and Mack2018; Kaye et al. Reference Kaye, Kiefer and Blazin2020). Barrera et al. (Reference Barrera, Granek and Shaheed2013) described oscillations between “tenacious and robust” and “tenuous and elusive” hopes as parents became aware of their child’s inevitable death. Some, but not all, parents may shift their priorities as previously held goals become less achievable (Hill et al. Reference Hill, Miller and Walter2014, Reference Hill, Faerber and Li2019). Importantly, parents can remain aware of their child’s mortality while continuing to hold hope, challenging dichotomous assumptions that equate hope with denial (Mack et al. Reference Mack, Wolfe and Cook2007; Kaye et al. Reference Kaye, Kiefer and Blazin2020). Parents themselves might even express a tension between hoping for survival and hoping to avoid suffering for their child (Reder and Serwint Reference Reder and Serwint2009).
The dynamic nature of parental hope can be understood through theories of grief. The Dual Process Model explains healthy grieving as oscillating between engaging with loss and engaging in everyday life (Stroebe and Schut Reference Stroebe and Schut1999), while the Dual Framework approach proposes that the aim is for individuals to hold the possibility of dying alongside a focus on living well (Jacobsen et al. Reference Jacobsen, Brenner and Greer2018). These frameworks help us understand how hope may fluctuate or coexist with awareness of loss.
Studies have shown that hope can enhance parental coping (Reder and Serwint Reference Reder and Serwint2009; Sisk et al. Reference Sisk, Kang and Mack2018; Liu et al. Reference Liu, Zhang and Wang2024), and, in fact, that some parents fear losing hope (Bally et al. Reference Bally, Duggleby and Holtslander2014). More recent studies have therefore focused on the clinician’s role in recognizing and supporting hope, offering broad communication strategies (Mack et al. Reference Mack, Wolfe and Cook2007; Rosenberg and Feudtner Reference Rosenberg and Feudtner2016; Hill Dl and Feudtner Reference Hill and Feudtner2018; Christianson and Kaye Reference Christianson and Kaye2025) and tools to foster hope (Bally et al. Reference Bally, Duggleby and Holtslander2014, Reference Bally, Burles and Spurr2021; Fonseca et al. Reference Fonseca, Carvalho and Querido2021; Hammer et al. Reference Hammer, Højgaard and Ás2023).
Clinician discomfort with interpreting and engaging with parents’ expressions of hope can create a gap between parents and clinicians, which, in turn, can negatively affect children, parents, and clinicians (Katz et al. Reference Katz, Hynson and Gillam2021). This study aimed to address this gap by examining parental hope through lived experiences, focusing on the various objects and patterns of hope, and how hope is demonstrated and engaged with during interactions between parents and clinicians.
Methods
Study setting and team
The study team included 2 palliative care physicians and a bioethicist.
Recruitment
Eligibility criteria included parents of a child known to a statewide pediatric palliative care service, who were aged 16 years or younger at death, and died at least 6 months prior to, but within 10 years of, recruitment. Parents of the same child were invited to participate in separate or joint interviews. Twenty parents participated, with 10 participants comprising 5 parental couples. Of these, 2 couples participated in separate individual interviews, while 3 couples participated together in a single interview (Table 1). Funding limitations precluded the use of interpreting services; therefore, participating parents were required to speak conversational English.
Parent and child details (M denotes mother, F denotes father)
Table 1 Long description
Columns list Parent, Time since bereavement in months, Child age, and Cancer marked Yes or No. Parents include M1 to M20 and F4, F9, F11, F16, F18, and F19. Time since bereavement is given for M1 29, M2 19, M3 47, M5 15, M6 22, M7 23, M8 22, M10 39, F11 40, M12 11, M13 23, M14 77, M15 56, M17 16, F19 65, and M20 49 months; no time since bereavement is shown for F4, F9, F16, or F18. Child age is listed as 8 years, 5 years, 8 months, 9 years, 5 years, 1 day with antenatal diagnosis, 13 months, 4 years, 1 years, 2 years, 16 years, 4 years, 12 years, 9 years, and 9 years; no child age is shown for F4, F9, F11, F16, or F18. Cancer is Yes for M1, M5, M12, M14, M15, M17, and F19, and No for M2, M3, M6, M7, M8, M10, M13, and M20; no cancer entry is shown for F4, F9, F11, F16, or F18.
Data collection
A semi-structured interview schedule was developed and refined iteratively. Interviews were conversational, with the interviewer following participants’ lead to elaborate on their lived experiences. All interviews were conducted via Zoom, and audio files were saved, transcribed verbatim, and anonymized.
Data analysis
Transcripts were managed and coded using NVivo and Word software. A selection of transcripts was co-coded by all authors, with discussions at regular intervals to compare and consider interpretations of the data. Data were analyzed using Braun and Clarke’s 6-step reflexive thematic analysis, offering a flexible yet rigorous approach to theme generation (Braun and Clarke Reference Braun and Clarke2021). A phenomenological framework underpinned the study, with the analysis grounded in parents’ lived experience (Ayton et al. Reference Ayton, Tsindos, Berkovic, Ayton, Tsindos and Berkovic2023). Analysis was iterative and inductive. Broad expressions of hope, such as “want” and “wish,” were included as they mirror what clinicians may observe in clinical practice.
Results
Study population
Twenty parents of 15 children participated in the study; 6 (30%) were fathers. Seven (47%) children had a cancer diagnosis (Table 1).
Parents gave rich and complex accounts of the nature of their hopes, how these played out over time, and how interactions with clinicians influenced their hopes. Four main themes, with subthemes, emerged. A summary table including illustrative quotes is presented (Table 2). Not all parents shared the same hopes, and some appeared to hold multiple, seemingly contradictory hopes simultaneously. Differences in the child’s diagnosis or likelihood of death did not appear to produce different themes.
Themes, subthemes, and illustrative quotes
Table 2 Long description
Three columns list Theme, Subtheme, and Illustrative quote. Theme 1, Objects of hope, includes survival, childs experience in life, day to day normality, memory making, and childs experience at end of life, each with a parent quote labeled by participant code and cancer or non cancer. Theme 2, Patterns of hope, includes dynamic nature of hope, alignment between parents, and hope and prognostic awareness, with multiple quotes in some rows including paired speakers for alignment between parents. Theme 3, Factors that influence hope, includes intrinsic nature of hope, clinical information, and clinician communication, each with one quote. Theme 4, Value of hope, includes positive value of hope with two quotes and negative value of hope with one quote. Quotes reference settings and terms including hospital, PICU, NICU, palliative care team, and pregnancy, and describe hopes ranging from survival and normal experiences to planning for end of life and concerns about hope being manipulated.
Objects of hope
Survival
Several parents described their hopes as being focused on survival.
…we hear all that… but we’re also gonna focus on this and the possibility, and the chance, and the hope. (M12, cancer)
Conversely, several other parents described an early understanding of their child’s prognosis, and therefore not having hope for a miracle or cure.
I wasn’t full of hope of a miracle or a cure or… I know medical science, well for me, it’s not perfect… I saw it… [child]’s not going to make it through this. (F19, cancer)
Child’s experience in life
Several parents shared their hopes of maximizing their child’s experiences throughout their lives.
…we wanted to let him experience whatever he could in whatever time he had because we had no idea if he was going to live for a month, ten years, we just didn’t know. (F9, non-cancer)
Some parents shared hopes for their child’s quality of life.
…it was always about quality of life for us, not more time. If he was hanging on in a vegetative state just for our benefit, that was no good… (F16, cancer)
The desire to tailor interventions to quality of life and comfort was expressed.
…we spent so much of our time fighting for less interventions, less appointments, but then trying to get hip surgery done, we had to fight really hard… everyone kept saying oh no, but she’s never going to walk… her legs were so stuck together, you couldn’t open them to clean her nappy… (ID13, non-cancer)
Day-to-day normality
Some parents expressed hope for normality in the face of illness.
I wanted to have a, for lack of a better word, normal pregnancy, not one filled with fear and worry… (M7, non-cancer)
One parent expanded on this by describing how such hope for normality was disrupted by frequent clinical visits.
And for instance, we knew [child] was dying, but we wanted to have a normal life as much as possible, right till the very end. Having medical staff coming regularly every day and different people coming stopped us from living that normal life. (M14, cancer)
Memory-making
Making memories in the face of diminishing time was a conscious focus for some parents.
I just could see where we were going… and we’d started to talk about making memories and making them fast and doing the things that we wanted to do ‘cause we didn’t have time up our sleeve. (M6, non-cancer)
Child’s experience at end-of-life
In addition to hopes for their child’s experience during life, some parents shared hopes for their child’s experience at the end of life.
I guess our hope was that it would be quick and that it would be relatively painless. (M13, non-cancer)
Patterns of hope
Dynamic nature of hope
Parents described how their hopes evolved over time across various clinical stages.
I didn’t have much hope at the start when he didn’t open his eyes for a month and then when he did… a little bit of hope just increased as time goes on.” (M8, non-cancer)
Vitally, parents explained that finding new objects of hope in the face of changing clinical information takes time, “…people need time to process and find hope maybe in a different way…” (M3, non-cancer)
Alignment between parents
Some parents described sharing similar priorities and hopes as they navigated treatment decisions.
We also were not going to be parents who would say, he must come home at any cost, because it’s not like that… (F4, non-cancer)
Conversely, differing hopes for parents of the same child were also observed.
So one of us became very invested in hope, and one of us didn’t. I didn’t have, and that’s partly how I am, but I didn’t, I wasn’t full of hope of a miracle or a cure. (F19, cancer)
Hope and prognostic awareness
Some parents described simultaneously experiencing hope and being aware of the potential for a bad outcome. One parent described a connection between hope and denial, but pointed out that they are not the same.
I think there’s a distinct difference between hope and denial, I think hope is what keeps you going and they are maybe, brothers and sisters, siblings, but they’re not the same. (F4, non-cancer)
Another parent illustrated this further by drawing a distinction between uncertainty and denial, “I think we’ve never been in denial. We might occasionally have been not completely certain about where we were.” (F4, non-cancer)
Parents who demonstrated an awareness of their child’s impending death, for example, by having conversations about death or having palliative and end-of-life care supports in place, still had moments of hoping for survival or more time.
I remember sitting there thinking before he died, I wonder if he’ll make it to his 10th birthday, that would be really cool… (M5, cancer)
While some parents described hope and reality-based thinking as existing simultaneously, others described them as alternating states, highlighting that holding hope did not mean denying reality.
I think we did… swing from one to the other… but I think a lot of the time throughout the journey we did have an underlying approach of being hopeful… but in saying that it wasn’t being naïve..” (M12, cancer)
Another father described having hope for a cure throughout his daughter’s illness, only relinquishing this when death was imminent.
I still thought there was hope… and that’s when I gave in… knowing that it was going to take our daughter. (F18, cancer)
Factors that influence hope
Intrinsic nature of hope
Some parents described hope as arising from within, independent of interactions with clinicians.
I don’t think you have to give it [hope] to them because I think it’s an intrinsic, almost a survival thing. (M3, non-cancer)
A few parents said that, on some level, all parents hope their child will survive, but not necessarily at all costs.
…as a parent, you always have that little hope somewhere hidden, saying I hope for a miracle… it’s difficult because you hope for a chance, but not the way she was.” (M1, cancer)
Clinical information
Parents’ expressions of hope were influenced by their child’s clinical picture. Some parents sought or found hope for survival by observing the positive elements of their child’s clinical condition.
It was just his lungs, right?.. They can grow out of it… everything worked, other than the lungs. (M3, non-cancer)
Other parents found hope in statistics, even if the odds were against them.
We used to say that someone had to be in that 30%, that 30% survival. (M5, cancer)
Uncertainty about the clinical trajectory left room for parents to hold hope that their child would respond to disease-targeted treatment.
But because it was untested and no one, no child had been, undertaken this treatment… we went… we have to give him the best chance of success. (F9, non-cancer)
Clinician communication
Interactions with clinicians influenced and tapped into parental hope. For example, one parent’s desire to be a parent to her unborn and unwell child was highlighted by the hope she found when clinicians used her unborn baby’s name and validated her love and role as a mother.
…she [palliative care nurse] said, ‘it’s so beautiful, I can see the love you have for your child…’ and that just hit me… it just made him real to me. (M7, non-cancer)
Another mother described how clinician language about individual differences and uncertainty can provide hope, “…and I guess the doctors give you hope as well because they say that every person’s cancer is different.” (M17, cancer)
Value of hope
Positive value of hope
Parents shared how hope allowed day-to-day survival in the face of their child’s condition. A parent (who described that for her hope did not equate to denial) emphasized the importance of hope by suggesting that forcing a family to face reality, even if they are in denial, can make getting through each day even more challenging.
And even if that family is in denial, what is wrong with supporting that, because at the end, that child is still going to die. So then why knock them down even further if that’s what they want or need to be able to get through every day without falling to shit and rocking in the corner, which is what you want to do. (M14, cancer)
Parents conveyed the value of hope by sharing the negative impact of its absence.
…I almost wish he had cancer because at least then we would have had some hope, because there is a chance for a cure where his diagnosis, there really at this stage with the current technology, there was only one end point, and that was him passing before his time.” (M6, non-cancer)
Negative value of hope
Some parents shared concerns about potential negative outcomes from both hope itself and from clinicians’ attempts to maintain hope.
One parent described how hope can distract from important conversations or difficult treatment decisions in the face of death. This parent expressed how hope can be potentially harmful by allowing burdensome procedures that are unlikely to provide clinical benefit and preventing honest conversations about death.
…hope… I’m a bit suspicious of it to be honest… it’s like there’s a bear about to eat you in the room, and you’re saying, I’m pretty hopeful this will go okay.” (F19, cancer)
Additionally, clinicians’ expressions of hope were not always viewed positively. Parents shared how clinicians sharing low-probability anecdotes to offer hope could make it harder to understand their child’s prognosis.
… he (oncologist) kind of spoke in terms of, ‘we’re going to do things to minimise the long-term impact’, like the prognosis was different… (M15, cancer)
…I can definitely see how it could be confusing to, I guess more hopeful, or parents that allow themselves to look for miracles… (F16, cancer)
Discussion
The results of this study build on existing literature and provide new insights into how parents experience hope when their child is facing a life-limiting condition and how clinicians can influence and work with parents’ expressions of hope. Particularly striking were the findings that: (1) clinicians can affect parents’ hopes in ways that may be beneficial or detrimental, and (2) although most parents consider hope to be positive and helpful, some perceive it as negative or potentially even harmful.
As described in previous studies, our findings support the idea that hope and prognostic awareness can coexist (Kamihara et al. Reference Kamihara, Nyborn and Olcese2015; Kaye et al. Reference Kaye, Kiefer and Blazin2020). Some parents described holding both hope and prognostic awareness simultaneously, while others reported oscillating between the 2. Importantly, for many parents, hope did not equate to denial. One parent highlighted a distinction between clinical uncertainty and denial. This is important because, in the face of clinical uncertainty, clinicians may focus on potential threats and losses and seek to ensure that parents understand the risk that things may not go well. In contrast, parents may focus on the hope and possibility that things will go in the desired direction, even if the probability of this occurring is low (Ruddick Reference Ruddick1999; Reder and Serwint Reference Reder and Serwint2009). Clinicians may therefore witness parents’ hopes fluctuating with changes in their child’s condition, including improvement, deterioration, and uncertainty.
This study, in keeping with the existing literature, showed the “breadths of hopes” experienced by parents of children with serious illness (Feudtner Reference Feudtner2009; Kamihara et al. Reference Kamihara, Nyborn and Olcese2015; Hill et al. Reference Hill, Nathanson and Carroll2018). It is notable that some of the hopes identified in our study, such as hope for survival or for a response to treatment, may not be within a parent’s control, whereas others may be, such as hope for their child’s experiences in life and at the end of life, day-to-day normality, and memory-making. Parents described packing lunchboxes even when their child had limited oral intake, wanting to experience pregnancy rituals even when the likely outcome was limited survival after birth, and making memories in the face of a limited life expectancy. Importantly, parents explained that these were not features of denial, but rather expressions of hope.
The various types of hope observed in this study offer insights into how clinicians can interact with parental hopes. A parent in our study reflected that it would have been helpful for clinicians to have guided them towards achievable hopes. This reflects Snyder’s conceptualization of hope as “the perceived capability to derive pathways to desired goals and motivate oneself via agency thinking to use those pathways” (Snyder Reference Snyder2002; Snyder et al. Reference Snyder, Rand and Sigmon2018). This supports the value of clinicians guiding parents to actively engage in hopes for goals they can influence.
The hope for normality, free from constant reminders of their child’s illness and inevitable death, suggests that for some families, grouping or minimizing clinical encounters where possible may be helpful. This needs to be carefully balanced against the risk of families feeling abandoned. Importantly, in this study, seeking a break from clinical encounters and conversations did not necessarily mean parents were unaware of or unable to engage with the seriousness of their child’s condition. Rather, the extent to which they could engage in any given moment might have varied. For example, a parent hoping for day-to-day normality might decline a palliative care visit, which may lead clinicians to mistakenly assume that they are not engaging with the idea of death. Clinicians may then impose more conversations about prognosis and death when these are not needed or helpful, risking fractured therapeutic relationships and negative outcomes for the child and parents. Knowing this, clinicians should ask themselves whether focusing any given conversation on a child’s prognosis is for their own benefit or truly for the parent’s or child’s benefit (Katz et al. Reference Katz, Hynson and Gillam2021).
To our knowledge, while studies have described clinicians’ concerns about parental hope (Reder and Serwint Reference Reder and Serwint2009), ours is the first to describe parents’ own concerns. Some parents worried about the potential for well-meaning clinicians to inadvertently manipulate or bolster hope, for example, by sharing accounts of rare positive outcomes. Concern was also expressed that hope, even if intrinsically generated, may enable treatments that were unlikely to be effective and distract from important tasks, such as conversations about death and dying. This is important because it highlights that not all parents want clinicians to focus conversations only on hope for survival, as they may risk missing opportunities to prepare for death. Additionally, parents highlighted how inconsistent messaging from different clinicians about prognosis, including information about low likelihood but positive outcomes, can be confusing for parents.
The distinction in our findings between intrinsic hope and clinician-influenced hope highlights the importance of clinicians recognizing their role in shaping and supporting parents’ hopes, while not overestimating their influence on fundamental parental hopes. At the same time, clinicians should consider the many other factors that influence hope, such as a child’s response to treatment, spirituality, social support, and emotional coping (Barrera et al. Reference Barrera, Granek and Shaheed2013). Exploring these domains may offer additional avenues for support and improve parents’ experiences as they navigate some of the most difficult moments in their lives. In doing so, clinicians might work with parents’ hopes to support treatment decision-making, potentially influencing outcomes for the child during their life, and the parents in bereavement.
Finally, while most parents of the same child shared similar hopes, priorities, and concerns, this was not always the case. The potential for parents of the same child to have different hopes over the course of their child’s illness has been previously described (Hill et al. Reference Hill, Nathanson and Fenderson2017; Milville et al. Reference Milville, Lelorain and Antoine2024). While this discordance adds complexity for clinicians, making time and space to explore each parent’s hopes and fears is important to ensure both parents’ voices are heard. This can also facilitate parents’ understanding of each other’s perspectives, even if they do not share the same decision-making approaches.
Strengths and limitations
A strength of the study was the inclusion of parents of children with both cancer and non-cancer conditions. While bereaved parents may have different perceptions from when their child was alive, their voices offer long-term insights, including whether hope was protective, helpful, or potentially misleading and harmful. Limitations include recruiting from a single statewide pediatric palliative care service, requiring parents to speak conversational English, and the potential for additional reflections from parents who declined to participate.
Conclusion
This study explored the complexity of hope through bereaved parents’ experiences. Some of the results reported in this paper confirm features of hope recognized in previous research: that hope is multidimensional, changes over time and can coexist with prognostic awareness. Beyond this, however, other results of this study offer new insights into how hope can be both generated intrinsically and shaped by clinical events and interactions with clinicians. Importantly, in the face of serious and life-limiting illness, not all parents find it helpful when clinicians focus on hope for survival, and some may even perceive hope for survival as misleading or harmful. Our findings highlight the individual and distinctive nature of hope, including among parents of the same child. This underscores the need for clinicians to avoid assumptions and approach each clinical encounter anew to best consider how to work with parental hope in every interaction.
Acknowledgments
The authors wish to thank the parents who participated in this study for sharing your and your children’s stories with us. We acknowledge all the parents and young people we look after. You motivate us to continually improve our care through research and education.
Author contributions
All authors (N.T.K., J.L.H., and L.G.) meet all ICMJE authorship criteria: (1) substantial contributions to conception and design of, or acquisition of data or analysis and interpretation of data, (2) drafting the article or revising it critically for important intellectual content, and (3) final approval of the version to be published.
Funding
N.T.K. is a PhD Candidate, in receipt of the Australian Government Research Training Program (RTP) Scholarship through The University of Melbourne and Murdoch Children’s Research Institute PhD Top Up scholarships.
Competing interests
The authors have no conflicts to declare.
Ethical approval
The manuscript presents data from the primary author’s doctoral research, conducted within a statewide pediatric palliative care program with institutional ethics approval.
Open access
