Parental hope in paediatric palliative care: a systematic review of the ethical issues in evidence-based literature

Abstract

Background

This systematic review aims to raise awareness of the concept of parental hope, which is distinct from the idea of agency – acting on behalf of someone else. Parental hope is an important factor in end-of-life care, particularly in light of recent advances in perinatology, neonatology, and paediatric palliative care (PPC). Parenting involves autonomous agency – acting and thinking on one's own behalf – as well as making decisions for one's children. Consequently, parental permission, authority and decision-making are integral aspects of parental attitudes towards their children in PPC. To our knowledge, this is the first systematic review to focus specifically on the ethical implications of parental hope in PPC.

Methods

A qualitative systematic review utilising Charmaz’s initial and focused coding of constructing grounded theory. A systematic search was conducted across two databases: Web of Science and Embase. The research period was from 01/01/2014 to 20/02/2025. Two reviewers independently screened articles against the eligibility criteria and appraised them using CASP critical appraisal tools. Sixty studies met the inclusion criteria and were analysed using initial and focused coding, with the results presented in diagrams. The results were reported in the PRISMA protocol.

Results

Key findings included identifying parental hope in PPC as a valuable area of future ethical research, given the various dilemmas involved and the potential advantages for parents of developing their caregiving skills for their children. The results of the four themes (‘False and realistic versus unrealistic parental hope’, ‘Evolution of parental hope as a child’s illness progresses’ with 17 sub-themes, ‘Parental hope and decision-making in PPC’, and ‘Social and structural determinants of parental hope’) were presented in four conceptual diagrams.

Conclusions

The results reveal the preference of parents for honest encouragement over false hope. Furthermore, parents can use hope as a cognitive heuristic to influence their decision-making process. Parents also expect clinicians to understand their situation and help them manage their hopes while respecting parental authority. Ethical concerns include equitable access to support programmes and online groups that aid parental caregiving. We believe that the moral beliefs expressed by parents in our review could inform values and standards for parents as caregivers in PPC.

Introduction

Hope can be defined as a positive state of mind that motivates individuals to make plans and take action to achieve their goals. According to Snyder, hopeful thinking requires both pathways and agency thought. Conceptually, he understands hope as a model (hope theory), in which personal goals are formed and realised [69].

The aim of this systematic review is to raise awareness of parental hope, which is not synonymous with the idea of agency, which is when an individual acts on behalf of someone else. Parental hope is an important factor in end-of-life (EOL) care, particularly in the context of the development of perinatology, neonatology, and paediatric palliative care (PPC), as well as the standardisation of the process of informing parents about medical procedures in the decision-making process [15, 35, 39]. Parental hope is linked to parental permission, authority and decision-making because being a parent involves autonomous agency – acting and thinking on one's own behalf – as well as making decisions on behalf of one's children. Traditionally, it is also considered the intentional capacity to act in accordance with one's values and beliefs as a parent. Therefore, in the context of parental permission and authority, a key part of the decision-making process is obtaining the child’s consent. This recognises the child’s needs and respects their wishes as they mature and develop cognitively. Children, particularly younger ones, and those who are unable to communicate their needs and emotions clearly due to immaturity or illness, are considered a vulnerable patient group.

Regarding the specific situation of parents in PPC, several models of parental hope already exist. For instance, the interactive model considers the roles of children, parents, and healthcare professionals in EOL decision-making, emphasising the importance of maintaining hope in uncertain situations [35]. Another model is the conceptual model of 'regoaling' in PPC, proposed by Hill et al. [34]. This model focuses on parental goals and managing parental expectations throughout the child's illness, in the context of 'regoaling' which states that parents' priorities regarding their children's interests may change over time and in specific situations. However, these changes are 'circuitous', meaning that the 'regoaling' process involves incorporating primary goals into the development of new ones. In our systematic review, we included the theory-based psychosocial intervention, the Keeping Hope Possible Toolkit by Bally et al. [4], which is based on grounded theory and aims to understand the experience of hope for parents whose children are receiving cancer treatment.

Although the psychological, social and clinical aspects of parental hope have been well documented, its ethical significance and role in caring for children with life-threatening illnesses remain unclear. For this reason, we conducted a systematic review of ethical issues in evidence-based literature to improve understanding of its role in PPC from a moral perspective.

For those who have never experienced it, the thought of losing a child is unfathomable. Caring for a seriously ill child can be an extremely difficult and emotionally overwhelming experience for parents, impacting their sense of hope. However, little is known about the potential ethical dilemmas related to adjusting hope in relation to the progression of the illness, how parental hope evolves during the caregiving process and its impact on decision-making, or the social and structural determinants of parental hope in PPC. The care process involves several factors, such as pain management, meeting psychosocial and spiritual needs, and helping patients cope with their situation. Helping parents maintain and rebuild their hope is a vital part of effective PPC, as it prevents them from becoming isolated or excluded due to fear of death and despair. [26, 27, 34, 56].

To the best of our knowledge, no published reviews exist that focus specifically on the ethical aspects of parental hope in PPC. This prompted us to formulate the following research questions:

1. What do 'false' and 'realistic' parental hopes mean in the context of PPC?

2. How does parental hope evolve as a child’s illness progresses?

3. What role does parental hope play in decision-making?

4. What are the social and structural determinants of parental hope in PPC?

We decided not to divide our research literature into 4 groups related to each research question because issues concerning parental hope are complex and require an interdisciplinary approach. This means that some ethical aspects could be missed by a search strategy that is too specific. Therefore, our search strategy referred to 4 research questions. After completing the literature search, we examined the detailed information through initial and focused coding in order to answer each research question. This approach did not focus on any specific moral theory or press any a priori assumptions, but rather tried to discover the parental point of view.

Methods

First, an exhaustive search of the literature on parental hope in PPC published from 01.01.2014 to 20.02.2025 was conducted by the first and second author independently using the Web of Science Core Collection (WoS), Scopus, MEDLINE – PubMed and Embase databases. The decision to include only articles published in the last 10–11 years (2014–2025) was made after taking into consideration the recent increased interest in the subject and to ensure that the latest and most relevant publications were taken into account. Furthermore, it is assumed that prior knowledge has been incorporated into recent research and literature on the subject.

The data were exported to Excel spreadsheets and screening through relevant titles and abstracts. All the results after each step were compared and discussed between authors. The results of these searches, conducted using the specified search strategies, are reported in the PRISMA 2020 flow diagram (Fig. 1) and Table 1.

Fig. 1.

Flow chart showing the electronic search, identification, and selection process for the reviewed articles. Source: Page MJ, et al. BMJ 2021;372:n71. https://doi.org/10.1136/bmj.n71. This work is licensed under CC BY 4.0. To view a copy of this license, visit

Table 1.

Reporting literature searches

	Web of Science Core Collection	Scopus
DATE	1–5/06122024/	6–8/20012025/ 9/20022025/
SEARCH STRATEGIES	1)ALL = (hope in paediatric palliative care) 2)ALL = (hope in pediatric palliative care) 3)ALL = (hope AND end-of-life care AND parents AND children) 4) ((ALL = (hope)) AND ALL = (EOL)) AND ALL = (parents) 5) (((ALL = (hope)) AND ALL = (parents)) AND ALL = (palliative care)) AND ALL = (child)	6) ALL = (“hope in paediatric palliative care”) 7) ALL = (hope AND end-of-life care AND parents AND children) hope AND "end of life care" AND parents AND children AND (LIMIT-TO (SUBJAREA, "MEDI") OR LIMIT-TO (SUBJAREA, "NURS") OR LIMIT-TO (SUBJAREA, "SOCI") OR LIMIT-TO (SUBJAREA, "PSYC") OR LIMIT-TO (SUBJAREA, "HEAL")) AND (LIMIT-TO (DOCTYPE, "ar")) AND (LIMIT-TO (LANGUAGE, "English")) 8) ALL = hope AND “pediatric palliative care” hope AND "pediatric palliative care" AND (LIMIT-TO (SUBJAREA, "MEDI") OR LIMIT-TO (SUBJAREA, "NURS") OR LIMIT-TO (SUBJAREA, "SOCI") OR LIMIT-TO (SUBJAREA, "PSYC") OR LIMIT-TO (SUBJAREA, "ARTS") OR LIMIT-TO (SUBJAREA, "HEAL") OR LIMIT-TO (SUBJAREA, "MULT")) AND (LIMIT-TO (DOCTYPE, "ar")) AND (LIMIT-TO (LANGUAGE, "English")) 9)All = hope and parent pediatric palliative care (advanced query)*
NEW RECORDS	1) 40 [5 included] 2) 151 [17 included] 3) 30 [5 included] 4) 15 [3 included] 5) 22 [8 included]	6) 5 [1 included] 7) 683 [6 included] 8) 401 [10 included] 9) 801 [5 included]
DUPLICATES	1) 0 2) 28 3) 52 4) 48 5) 138	6) 9 7) 103 8) 336 9) 652
TOTAL	1) N = 40 2) N = 179 3)N = 82 4)N = 63 5)160	6) N = 14 7) N = 786 8) N = 737 9) N = 1453

hope AND parent AND pediatric AND palliative AND care AND PUBYEAR > 2013 AND PUBYEAR < 2026 AND (LIMIT-TO (SUBJAREA, "MEDI") OR LIMIT-TO (SUBJAREA, "NURS") OR LIMIT-TO (SUBJAREA, "PSYC") OR LIMIT-TO (SUBJAREA, "SOCI") OR LIMIT-TO (SUBJAREA, "BIOC") OR LIMIT-TO (SUBJAREA, "ARTS") OR LIMIT-TO (SUBJAREA, "NEUR") OR LIMIT-TO (SUBJAREA, "HEAL") OR LIMIT-TO (SUBJAREA, "ENVI") OR LIMIT-TO (SUBJAREA, "MULT")) AND (LIMIT-TO (LANGUAGE, "English")) AND (LIMIT-TO (EXACTKEYWORD, "Human") OR LIMIT-TO (EXACTKEYWORD, "Child") OR LIMIT-TO (EXACTKEYWORD, "Article") OR LIMIT-TO (EXACTKEYWORD, "Psychology") OR LIMIT-TO (EXACTKEYWORD, "Parents") OR LIMIT-TO (EXACTKEYWORD, "Palliative Therapy") OR LIMIT-TO (EXACTKEYWORD, "Palliative Care") OR LIMIT-TO (EXACTKEYWORD, "Child Parent Relation") OR LIMIT-TO (EXACTKEYWORD, "Quality Of Life") OR LIMIT-TO (EXACTKEYWORD, "Qualitative Research") OR LIMIT-TO (EXACTKEYWORD, "Interpersonal Communication") OR LIMIT-TO (EXACTKEYWORD, "Communication") OR LIMIT-TO (EXACTKEYWORD, "Controlled Study") OR LIMIT-TO (EXACTKEYWORD, "Infant") OR LIMIT-TO (EXACTKEYWORD, "Parent") OR LIMIT-TO (EXACTKEYWORD, "Questionnaire") OR LIMIT-TO (EXACTKEYWORD, "Major Clinical Study") OR LIMIT-TO (EXACTKEYWORD, "Decision Making") OR LIMIT-TO (EXACTKEYWORD, "Family") OR LIMIT-TO (EXACTKEYWORD, "Health Care Personnel") OR LIMIT-TO (EXACTKEYWORD, "Caregiver") OR LIMIT-TO (EXACTKEYWORD, "Childhood Cancer") OR LIMIT-TO (EXACTKEYWORD, "Terminal Care") OR LIMIT-TO (EXACTKEYWORD, "Systematic Review") OR LIMIT-TO (EXACTKEYWORD, "Pediatrics") OR LIMIT-TO (EXACTKEYWORD, "Preschool Child") OR LIMIT-TO (EXACTKEYWORD, "Clinical Article") OR LIMIT-TO (EXACTKEYWORD, "Procedures") OR LIMIT-TO (EXACTKEYWORD, "Social Support") OR LIMIT-TO (EXACTKEYWORD, "Cancer") OR LIMIT-TO (EXACTKEYWORD, "Child, Preschool") OR LIMIT-TO (EXACTKEYWORD, "Caregivers") OR LIMIT-TO (EXACTKEYWORD, "Hope") OR LIMIT-TO (EXACTKEYWORD, "Surveys And Questionnaires") OR LIMIT-TO (EXACTKEYWORD, "Coping Behavior") OR LIMIT-TO (EXACTKEYWORD, "Adaptation, Psychological") OR LIMIT-TO (EXACTKEYWORD, "Prognosis") OR LIMIT-TO (EXACTKEYWORD, "Anxiety") OR LIMIT-TO (EXACTKEYWORD, "Cross-sectional Study") OR LIMIT-TO (EXACTKEYWORD, "Semi Structured Interview") OR LIMIT-TO (EXACTKEYWORD, "Patient Care") OR LIMIT-TO (EXACTKEYWORD, "Children") OR LIMIT-TO (EXACTKEYWORD, "Interview") OR LIMIT-TO (EXACTKEYWORD, "Oncology") OR LIMIT-TO (EXACTKEYWORD, "Follow Up") OR LIMIT-TO (EXACTKEYWORD, "Advance Care Planning") OR LIMIT-TO (EXACTKEYWORD, "Religion") OR LIMIT-TO (EXACTKEYWORD, "Practice Guideline") OR LIMIT-TO (EXACTKEYWORD, "Cross-Sectional Studies") OR LIMIT-TO (EXACTKEYWORD, "Emotion") OR LIMIT-TO (EXACTKEYWORD, "Depression") OR LIMIT-TO (EXACTKEYWORD, "Cancer Patient") OR LIMIT-TO (EXACTKEYWORD, "Human Relation") OR LIMIT-TO (EXACTKEYWORD, "Outcome Assessment") OR LIMIT-TO (EXACTKEYWORD, "Thematic Analysis") OR LIMIT-TO (EXACTKEYWORD, "Mental Health") OR LIMIT-TO (EXACTKEYWORD, "Death") OR LIMIT-TO (EXACTKEYWORD, "Professional-Family Relations") OR LIMIT-TO (EXACTKEYWORD, "Personal Experience") OR LIMIT-TO (EXACTKEYWORD, "Perception") OR LIMIT-TO (EXACTKEYWORD, "Ethics") OR LIMIT-TO (EXACTKEYWORD, "Mother") OR LIMIT-TO (EXACTKEYWORD, "Distress Syndrome") OR LIMIT-TO (EXACTKEYWORD, "Physician") OR LIMIT-TO (EXACTKEYWORD, "Mental Stress") OR LIMIT-TO (EXACTKEYWORD, "Spirituality") OR LIMIT-TO (EXACTKEYWORD, "Chronic Disease") OR LIMIT-TO (EXACTKEYWORD, "Resilience") OR LIMIT-TO (EXACTKEYWORD, "Psychological Resilience") OR LIMIT-TO (EXACTKEYWORD, "Parental Attitude") OR LIMIT-TO (EXACTKEYWORD, "Education") OR LIMIT-TO (EXACTKEYWORD, "Stress, Psychological") OR LIMIT-TO (EXACTKEYWORD, "Psychosocial Care") OR LIMIT-TO (EXACTKEYWORD, "Nursing") OR LIMIT-TO (EXACTKEYWORD, "Doctor Patient Relationship") OR LIMIT-TO (EXACTKEYWORD, "Shared Decision Making") OR LIMIT-TO (EXACTKEYWORD, "Health Care Delivery") OR LIMIT-TO (EXACTKEYWORD, "Conversation") OR LIMIT-TO (EXACTKEYWORD, "Content Analysis") OR LIMIT-TO (EXACTKEYWORD, "Retrospective Study") OR LIMIT-TO (EXACTKEYWORD, "Prospective Study") OR LIMIT-TO (EXACTKEYWORD, "Physician-Patient Relations") OR LIMIT-TO (EXACTKEYWORD, "Cancer Prognosis") OR LIMIT-TO (EXACTKEYWORD, "Therapy") OR LIMIT-TO (EXACTKEYWORD, "Pain") OR LIMIT-TO (EXACTKEYWORD, "Medical Information") OR LIMIT-TO (EXACTKEYWORD, "Risk Factor") OR LIMIT-TO (EXACTKEYWORD, "Cancer Therapy") OR LIMIT-TO (EXACTKEYWORD, "Wellbeing") OR LIMIT-TO (EXACTKEYWORD, "Nurse") OR LIMIT-TO (EXACTKEYWORD, "Mortality") OR LIMIT-TO (EXACTKEYWORD, "Hospitalization") OR LIMIT-TO (EXACTKEYWORD, "Cohort Analysis") OR LIMIT-TO (EXACTKEYWORD, "Uncertainty") OR LIMIT-TO (EXACTKEYWORD, "Pediatric Oncology") OR LIMIT-TO (EXACTKEYWORD, "Pediatric Palliative Care") OR LIMIT-TO (EXACTKEYWORD, "Organization And Management") OR LIMIT-TO (EXACTKEYWORD, "Medline") OR LIMIT-TO (EXACTKEYWORD, "Health Personnel Attitude") OR LIMIT-TO (EXACTKEYWORD, "Treatment Outcome") OR LIMIT-TO (EXACTKEYWORD, "Health Care Quality") OR LIMIT-TO (EXACTKEYWORD, "Mothers") OR LIMIT-TO (EXACTKEYWORD, "Clinical Practice") OR LIMIT-TO (EXACTKEYWORD, "Child Care") OR LIMIT-TO (EXACTKEYWORD, "Disease Severity") OR LIMIT-TO (EXACTKEYWORD, "Clinical Decision Making") OR LIMIT-TO (EXACTKEYWORD, "Qualitative Analysis") OR LIMIT-TO (EXACTKEYWORD, "Cancer Survivor") OR LIMIT-TO (EXACTKEYWORD, "Resilience, Psychological") OR LIMIT-TO (EXACTKEYWORD, "Prevalence") OR LIMIT-TO (EXACTKEYWORD, "Medical Oncology") OR LIMIT-TO (EXACTKEYWORD, "Hospice Care") OR LIMIT-TO (EXACTKEYWORD, "Emotions") OR LIMIT-TO (EXACTKEYWORD, "Cancer Diagnosis") OR LIMIT-TO (EXACTKEYWORD, "Attitude To Health") OR LIMIT-TO (EXACTKEYWORD, "Prospective Studies") OR LIMIT-TO (EXACTKEYWORD, "Consultation") OR LIMIT-TO (EXACTKEYWORD, "Retrospective Studies") OR LIMIT-TO (EXACTKEYWORD, "Pediatric Patient") OR LIMIT-TO (EXACTKEYWORD, "Patient Referral") OR LIMIT-TO (EXACTKEYWORD, "Decision-making") OR LIMIT-TO (EXACTKEYWORD, "Advanced Cancer") OR LIMIT-TO (EXACTKEYWORD, "Meta Analysis") OR LIMIT-TO (EXACTKEYWORD, "Complication") OR LIMIT-TO (EXACTKEYWORD, "School Child") OR LIMIT-TO (EXACTKEYWORD, "Case Report") OR LIMIT-TO (EXACTKEYWORD, "Health Care") OR LIMIT-TO (EXACTKEYWORD, "Epidemiology") OR LIMIT-TO (EXACTKEYWORD, "Clinician") OR LIMIT-TO (EXACTKEYWORD, "Care Behavior") OR LIMIT-TO (EXACTKEYWORD, "Attitude To Death") OR LIMIT-TO (EXACTKEYWORD, "Humans")) AND (LIMIT-TO (DOCTYPE, "ar") OR LIMIT-TO (DOCTYPE, "ch"))

*9)All = hope and parent pediatric palliative care (advanced query)*

The selection process was based on three criteria: (1) publication type (PT); (2) the population and research topic; and (3) topic-related content. In the case of PT, both quantitative and qualitative peer-reviewed English-language research articles were retained (see Table 2). We excluded doctoral and Master's theses or dissertations because we assumed that the most rigorous of these would have been published as articles. Book chapters and books could be included, but none were relevant to our review. Commentaries, editorials and conference abstracts were excluded as most were not based on empirical evidence. The publication type is an important criterion for the legitimacy of the research, such as double-blind review and journals with good editorial practices that are indexed in scientific databases such as Web of Science and Scopus. Our intention was to collect legitimate research, because only under these conditions can the subsequent procedural steps of the systematic review be scientifically grounded.

Table 2.

Number of selected studies with characteristics

Number of the study	Authors and publication year	Country	Methodology	Sample and area
1	Abdulla et al. (2024) [1]	India	Qualitative study	in-depth interviews and thematic analysis, the study population selected were parents of children aged < 13 years with non-malignant life-limiting illnesses admitted to the paediatric department of a government medical college in Kerala, interviews were conducted with 24 primary caregivers (15 mothers, 8 fathers, and 1 paternal grandmother)
2	Atout et al. (2024) [2]	Jordan, Egypt	Qualitative study	a narrative inquiry methodology, 20 semi-structured interviews with the mothers of children with cancer recruited from one pediatric hospital located in Amman, Jordan
3	Bally et al. (2021) [3]	Canada	Qualitative study	focus groups conducted with parental caregivers and health care and support providers (The 18 participants included 16 women and 2 men, of which 7 were parents (6 mothers and a father), 5 registered nurses, 2 physicians, a social worker, a child life specialist, and 2 community support staff)
4	Bally et al. (2021) [4]	Canada	Mixed methods—quantitative and qualitative	a theory-based psychosocial intervention, the Keeping Hope Possible Toolkit. 59 participants were randomly assigned to one of two sequence groups, with measures of hope, feelings of control, distress, and uncertainty completed pre- and post-intervention, and at a three-month follow-up. Qualitative interviews sought to assess participant experiences with the intervention, along with acceptability and feasibility
5	Bekui et al. (2020) [5]	Ghana	Qualitative study	purposive sampling technique was used to recruit participants who met the inclusion criteria, 13 participants were interviewed one-on-one, using a semi-structured interview guide, all interviews were audio taped and transcribed verbatim, data were analyzed using thematic content analysis, the children of these parents were below 12 years of age, who presented with different types of cancers, and were diagnosed at least within the period of three to 36 months ago
6	Bell et al. (2019) [6]	USA	Quantitative study	cross-sectional quantitative study was to pilot a novel measure of state-based hope, and test relationships among uncertainty, hope, spirituality, and coping efficacy in mothers of children with Duchenne/Becker Muscular Dystrophies, 202 mothers participated in this study
7	Bennett et al. (2024) [7]	England	Qualitative study	data collected through semistructured interviews and documents using a constructivist and situational grounded theory approach, 13 parents with experience of end-of-life decisions or advance care planning for a child (age 0–17 years) with a life-limiting condition or lifethreatening condition (11 interviews were undertaken with analysis of 9 advance care plans, parents were interviewed separately (n = 9) or together (n = 2))
8	Bristow et al. (2021) [8]	Australia	Qualitative study	semi-structured interviews were conducted with 17 maternal caregivers in rural New South Wales, Australia, who had at least one child with a chronic health condition aged between 2–18 years, thematic analysis was used to develop a thematic framework
9	Burles et al. (2022) [9]	Canada	Mixed methods—quantitative and qualitative	16 parental caregivers participated in the study in the Saskatchewan Cancer Agency or Pediatric Palliative Care Services of the Saskatoon Health Region
10	Chen et al. (2022) [12]	China	Qualitative study	14 parents of adolescent cancer patients in one-child families (11 mothers and 3 fathers) in China, data were collected using in-depth semi-structured interviews and analysed using van Manen's hermeneutic phenomenological approach, the COREQ checklist was used for this study
11	Coats et al. (2016) [13]	USA	Qualitative study	the thematic analysis was completed using previously transcribed, de-identified parental interview transcripts (7 parents [5 mothers, 2 fathers], grounded theory methodology
12	Conway et al. (2017) [14]	USA, Denmark	Qualitative study	50 parents of children diagnosed with cancer were given the Reaction to Diagnosis Interview, and asked 5 open-ended questions about hope. Answers were analyzed using content analysis. Parents’ adaptation to their child’s diagnosis was compared with answers to the hope questions
13	Donohue et al. (2017) [16]	USA	Quantitative study	telephone survey with 40 questions: Likert, yes/no, and short-answer responses, 74 parents were interviewed, most were 25–50 years old, and 75% felt their child was very sick, hhildren ranged from newborn to adolescence
14	Donovan et al. (2022) [17]	Australia	Qualitative study	descriptive study in which 11 parents (9 mothers, 2 fathers) participated in a semi-structured telephone interview guided by Discovery Interview methodology, inductive thematic analysis identified the major learnings from participants
15	Effendy et al. (2022) [19]	Indonesia	Qualitative study	semi-structured interviews with 11 mothers and with 1 father which were audio-recorded and then transcribed verbatim, the data were analyzed using qualitative content analysis, the reporting of the study was based on the Consolidated Criteria for Reporting Qualitative Research checklist
16	Fahner et al. (2020) [20]	The Netherlands	Qualitative study	interpretive qualitative study using thematic analysis aims to identify how parents envision the future when caring for their seriously ill child, single interviews and 2 focus groups were attended by 20 parents of 17 seriously ill children
17	Fatollah Zadeh et al. (2021) [21]	Australia, Iran	Quantitative study	a cross-sectional and descriptive correlational design was used in this study, a demographic questionnaire and the Herth Hope Index were administered to a sample of 240 mothers who have a child with cancer to assess level of hope, data was analysed using descriptive statistics, Spearman’s rho, independent sample t test and one-way ANOVA
18	Feraco et al. (2017) [22]	Argentyna, Australia, USA	Mixed methods—quantitative and qualitative	104 parents of children with advanced cancer cared for at three children's hospitals were asked to share details of conversations in the preceding three months that contained “good news” or “bad news” related to their child's medical condition, mixed methods has been used to evaluate parent responses to both open-ended and fixed-response items
19	Fonseca et al. (2020) [23]	Portugal	Qualitative study	10 parents of inpatient children with CCCs was recruited from a pediatric palliative care unit in a Portuguese public hospital, a demographic form and audio-recorded semi-structured, face-to-face interviews were conducted with each participant to explore the experiences, processes, and meanings of hope, and to describe how parents of children receiving pediatric palliative care perceived the usefulness of receiving therapeutic letters, the interviews were transcribed verbatim, and using a thematic analysis, a systematic approach to data analysis was completed
20	Ghosal et al. (2022) [25]	India	Qualitative study	30 parents of children with advanced cancer from a tertiary cancer center in India were surveyed to understand parental preferences for prognostic information
21	Hendricks-Ferguson et al. (2019) [28]	USA	Qualitative study	10 parents participated in semistructured interviews after receiving the COMPLETE intervention which included 3 sessions delivered shortly after diagnosis and at the next 2 cancer treatment evaluations (sessions of COMPLETE focused on early PC/EOL care discussions at diagnosis and after tumor response evaluations with their child's providers)
22	Hendricks-Ferguson et al. (2017) [29]	USA	Qualitative study	a single-group pilot study targeting 13 parents’ of 11 children stress and coping outcomes during the first 6 months postdiagnosis, the authors evaluated parent outcomes at 4 time points (baseline and 3 post-sessions)
23	Hill et al. (2019) [30]	USA	Quantitative study	longitudinal sample included 124 parents of 100 children hospitalized with serious illness, the authors used latent transition models to classify parents into groups with similar Good-Parent Beliefs during the baseline and follow-up periods and modeled the change in good-parent beliefs over time as a function of covariates using generalized linear mixed models
24	Hill et al. (2018) [31]	USA	Mixed methods—quantitative and qualitative	a mixed-methods prospective cohort study on decision-making, parents of seriously ill children reported demographic characteristics and hopes at baseline and reported any changes in hopes at 4-, 8-, 12-, 16-, and 20-month follow-up visits. Hopes were coded into 9 domains. Hope changes and domain changes were identified for each parent at each visit
25	Hill et al. (2017) [32]	USA	Mixed methods—quantitative and qualitative	84 parents (42 dyads) of seriously ill children reported the major problems and hopes for their children at baseline. Thirty-two parents (16 dyads) answered the same questions at 24 months. Problems and hopes were classified into nine domains. Observed concordance was calculated between parents on each domain. Data for parents of 11 children who died are reported separately
26	Hill et al. (2015) [33]	USA	Quantitative study	71 parents and 43 physicians were asked to report problems and hopes and perceived agreement for 50 children receiving palliative care, problems and hopes were classified into eight domains, observed concordance was calculated between parents and between each parent and the physicians
27	Janvier et al. (2020) [36]	Canada, USA	Mixed methods—quantitative and qualitative	parents of children with trisomy 13 and 18 who were part of online social support networks were asked to describe their best and worse experiences, as well as supportive clinicians they met, 332 parents completed the questionnaire about 272 children
28	Janvier et al. (2016) [37]	Canada	Mixed methods—quantitative and qualitative	332 parents who answered questions about their 272 children (87% response rate based on site visits; 67% on invitations sent). When parents were asked about their hope after the diagnosis, the main themes invoked by parents were the following: meet their child alive (80% of parents with a prenatal diagnosis), spend some time as a family (72%), bring their child home (52%), and give their child a good life (66%)
29	Kamihara et al. (2015) [38]	USA	Qualitative study	audiotaped conversations between clinicians and parents of 32 children with relapsed or refractory cancer were conducted and then parents were interviewed about their hopes and expectations for their child
30	Koch et al. (2023) [40]	USA	Qualitative study	a total of 193 interviews from 46 individuals (parents, nurses, physicians, and nurse practitioners) responsible for the care of 11 infants with complex congenital heart disease (CCHD) were analyzed to understand how hope features in experiences related to communication, relationships, and emotions that influence decision making
31	Kolmar et al. (2023) [41]	USA	Qualitative study	a qualitative study of Muslim parents of children with life-limiting conditions, semistructured interviews with parents were conducted to assess their experiences with the American health care system
32	Koyu et al.(2024) [42]	Turkey	Mixed methods—quantitative and qualitative	parents of 120 children with cancer were included in the cross-sectional, correlational study
33	Lin et al. (2020) [43]	Taiwan	Qualitative study	a descriptive phenomenological study was conducted through in-depth interviews with three parents of two adolescents in Taiwan, data were analysed using Colaizzi’s seven-step protocol
34	Lotz et al. (2017) [44]	Germany, Switzerland	Qualitative study	a semi-structured interview study with 11 parents of 9 children who had died from a severe illness. The interviews were analyzed by descriptive and evaluation coding according to Saldaña
35	Lou et al. (2015) [45]	China	Qualitative study	data were collected through in-depth face-to-face interviews, Colaizzi’s method for analyzing phenomenological data was used to elicit an invariant description of the interviews’ meaning
36	Manor-Binyamini et al. (2022) [46]	Israel	Qualitative study	15 parents of children (aged 2–18) with cancer participated in semi-structured interviews in an oncology department of an Israeli hospital, data were analyzed using a phenomenological thematic analysis approach
37	Marron et al. (2019) [47]	USA	Quantitative study	353 parents of children with newly diagnosed cancer at 2 tertiary cancer centers, and each child's oncologist were surveyed using multivariable logistic regression, the authors assessed associations between parental report of elements of prognosis discussions with the oncologist (quality of information/communication and prognostic disclosure) and potential consequences of these discussions (trust, hope, peace of mind, prognostic understanding, depression, and anxiety), analyses were stratified by oncologist-reported prognosis
38	Mekelenkamp et al. (2020) [48]	The Netherlands	Qualitative study	a qualitative descriptive study was performed among parents of eight families, data were thematically analyzed
39	Mills et al. (2023) [49]	Australia	Qualitative study	an exploratory qualitative design was used, employing a thematic analysis of data derived through semi-structured interviews which presented hypothetical vignettes of serious illness conversations to elicit parental perspectives
40	Miquel et al. (2024) [50]	Spain	Qualitative study	interviews of 14 parents of children included in a palliative care program in a pediatric hospital in Barcelona
41	Misko et al. (2015) [51]	Brasil	Qualitative study	the Symbolic Interactionism and the Theory Based on Data were used, 15 families with kids and/or teenagers in palliative care were interviewed, and data were collected through semi-structured interviews
42	Nafratilova et al. (2018) [52]	Indonesia	Qualitative study	descriptive qualitative phenomenology design
43	Nair et al. (2017) [53]	India	Quantitative study	structured questionnaire based study of 43 mothers of newly diagnosed pediatric cancer patients undergoing treatment in pediatric oncology division, mothers received initial counseling regarding their child's cancer and treatment from the doctor, questionnaire was administered 2–6 months after initial counseling and mothers self-reported their responses
44	Nicholas et al. (2017) [54]	Canada	Qualitative study	a longitudinal grounded theory design examining parental hope, 35 parents were interviewed regarding their experiences with an emergent description of the role of spirituality in parents’ daily lives
45	Nyborn et al. (2016) [55]	USA	Qualitative study	audiotaped conversations between clinicians and parents of children with newly relapsed or refractory cancer, and then parents were interviewed about experiences with prognosis communication, they were asked to reflect on physician statements about prognosis
46	Ozanne et al. (2018) [57]	Sweden	Qualitative study	semi structured interviews of the parents of 12 children were analyzed using a combination of inductive and deductive qualitative content analysis
47	Popp et al. (2015) [58]	USA	Mixed methods—quantitative and qualitative	50 parents completed an interview about the diagnosis experience and questionnaires about hopefulness, family functioning, and family-centered care
48	Porter et al. (2023) [59]	USA	Mixed methods—quantitative and qualitative	longitudinal, mixed-methods study, we audio-recorded serial disease re-evaluation conversations between children with advancing cancer, parents, and primary oncologists and separately surveyed and interviewed oncologists at disease progression time points
49	Rafferty et al. (2020) [60]	USA	Qualitative study	the authors used the central concepts within Snyder’s hope theory to guide our directed content analysis of parents’ interviews about their hopeful and hopeless experiences, their sample consisted of primarily Christian married mothers
50	Rossato et al. (2022) [62]	Brasil, Spain	Qualitative study	a qualitative study carried out with 23 participants (being 21 women and two men; age average of 35,9 years old), semi-structured interviews were virtually conducted, recorded, fully transcribed, organized and analyzed using a thematic-reflective analysis
51	Sisk et al. (2021) [63]	USA	Qualitative study	qualitative analysis of 35 audio-recorded outpatient consultations between physicians and families of children whose cancer recently progressed
52	Sisk et al. (2021) [64]	USA	Qualitative study	secondary analysis of semi-structured interviews with 80 parents of children with cancer across 3 academic medical centers during treatment, survivorship, or bereavement, the authors employed semantic content analysis, using the functional model of parental communication as an a priori framework
53	Sisk et al. (2020) [65]	USA	Qualitative study	semi structured interviews with 78 parents of children with cancer from 3 academic medical centers at 1 of 3 time points: treatment, survivorship, or bereavement, interviews were analyzed transcripts using inductive and deductive coding
54	Sisk et al. (2018) [66]	USA	Quantitative study	prospective, longitudinal, questionnaire-based cohort study of parents and physicians of children with cancer at two academic pediatric hospitals
55	Slaninka et al. (2021) [67]	Slovakia	Qualitative study	qualitative research comprising 13 interviews with parents who lost their adolescent child to cancer, semi-structured interview and interpretative phenomenological analysis
56	Smith et al. (2018) [68]	Canada	Qualitative study	a Delphi study consisting of 3 rounds of survey questions and controlled feedback to experts was employed, experts suggested strategies for each subprocess and ranked them in order of highest to lowest according to feasibility and effectiveness
57	Spurr et al. (2022) [70]		Quantitative study	data for this analysis are derived from a quasi-experimental evaluation of a support intervention with a purposeful sample of parental caregivers from a western Canadian province, participants completed a demographic survey and four quantitative measures at baseline and following use of the support intervention
58	Superdock et al. (2018) [71]	USA	Qualitative study	the study sample included 16 cases featuring children with complex life-threatening conditions. The length of study for each case varied, ranging in duration from 8 to 531 days (median = 380, mean = 324, SD = 174). Data from each case included medical records and sets of interviews conducted at least monthly with mothers (n = 16), fathers (n = 12), and HCPs (n = 108). Thematic analysis was performed on 363 narrative interviews to identify R&S themes and content related to decision-making
59	Szabat (2020) [72]	Poland	Qualitative study	initial and focused coding using Charmaz's constructed grounded theory and elements of Colaizzi's method
60	Zalud et al. (2024) [73]	USA	Qualitative study	matched semi-structured interviews were conducted with parents and oncologists 0–7 days after medical encounters at timepoints of disease progression or relapse, reflexive thematic analysis was conducted to describe parent and oncologist impressions of communication quality

For the second selection criterion, only articles dealing with study populations including parents of children with PPC were considered. Therefore, studies related to bereaved parents, parents of adolescents and young adults as a group, parents as actors, clinical trials, intensive care units and neonatology and perinatology were excluded, as these areas require separate consideration. Furthermore, studies in which hope was analysed as part of a spiritual or religious experience were excluded, since the relationship between hope, spirituality, and religiousness requires separate examination. However, some aspects related to parental hope that were spiritual or religious in nature needed to be included in the results and discussion because it was impossible to separate them completely from the main topic. Therefore, it is important to remember that the main topic is parental hope. Similarly, studies in which hope was discussed in the context of communication between parents and healthcare providers were rejected, as the role of hope in interpersonal medical communication deserves separate discussion in another study. However, it was unavoidable to include some communication context when it came to the issue of parental hope, so several studies in which hope was elaborated upon as a main topic were included in the review.

The third criterion was that only studies which significantly elaborated on the hope of parents with PPC were to be included. This means that only studies addressing parents who experience hope and endeavour to utilise it to facilitate the care of their child in PPC were included. One study on training in hopelessness was excluded, as this topic requires a more in-depth interdisciplinary analysis. Another study was removed because the main text was written in French, despite the abstract and title being prepared in English.

Although we searched the Embase and PubMed databases using the same search strategies as in WoS and Scopus, we did not obtain any results from these databases that met the criteria set out in the search strategies. For this reason, we did not report any results from the Embase and PubMed databases in Table 1.

In terms of duplicate identification, each search was transported and downloaded from the relevant database in Excel or CSV UTF-8 (comma separated) format to files on the first and second author's computers. The search records were then added to an Excel spreadsheet, one at a time and in the appropriate order, using the 'copy-paste' function. Duplicates in the corresponding spreadsheets were identified using the following mode: conditional formatting – cell highlighting rules – duplicate values, highlighted in red, saved and counted. The values obtained were checked twice by the first author and additionally by the second author. All results were saved in the Table 1. The Prisma-S checklist was used to fully document the search [61].

After screening and selecting titles and abstracts, the second author prepared the database of abstracts and results of selected studies in the Word file. From then on, we worked on this database with titles, abstracts and research results. After screening this database, using Word Office tools, we selected 60 studies for coding (all studies included in the review – Table 2). The first and second authors independently appraised all eligible studies that met the inclusion criteria using the Critical Appraisal Skills Programme (CASP).1 Satisfactory CASP scores for quality assessment were achieved and no study was marked with a fatal flow.

Analysis of the data was conducted using initial and focused coding of Charmaz's constructed grounded theory [11]. The data were collected and analysed simultaneously through line-by-line coding and surveyed via codes and categories. Further analysis identified links among the categories which were presented in 4 conceptual diagrams (Figs. 2, 3, 4, 5). All diagrams were designed using ‘SmartArt’.

Fig. 2.

Theme: false and realistic versus unrealistic parental hope

Fig. 3.

Theme: evolution of parental hope as a child's illness progresses

Fig. 4.

Theme: parental hope and decision-making in pediatric palliative care

Fig. 5.

Theme: social and structural determinants of parental hope

1. Hope for cure/recovery

   • Hope for the child's recovery despite the doctor's diagnosis [2]
   • Hope as the earnest expectation for complete healing of the sick children [5]
   • Mother's hope for her daughter's cure [2]
   • Hope for a cure/hope for recovery or for a miraculous recovery [29]
   • Parental hope that scientists will find a cure [29]
   • Hope that child will be cured of cancer [54]
   • Maintaining hope for a cure [38]
   • Hope for having a healthy child [29]
   • Hopeful attitude of getting cure with treatment [43]
   • Hope that they are getting to get rid of everything [29]
   • Parental hope that they will be able to get rid of everything (cancer), that there will be no symptoms of the disease, and that parents will not expect that there will be no cases of cancer in the future [29]
2. Hope for treatment response

   • Hope for effective treatment [29]/hope for a good outcome of treatment [38]
   • Parental hope for a long life and that the cancer would respond to treatment, hope for a life prolongation, or other aspects of treatment response [29]
   • Stabilization of the disease and a normal life for their child [29]
   • Hope for their child to will overcome the disease and have a normal life [29]
   • Parental hope for a normal life for their child [29]
   • Hope for a normal life [29]
   • Parental hope for a normal life for their child [29]
   • Stabilization of the disease and a normal life for their child [29]
   • Being full of hope and expectations even though one of the parent was in a state approaching physical exhaustion [33]
   • Being hopeful about positive outcome of their child's illness [5]
3. Hope for survival/life extension

   • Mother hopes against hope that her son will live as long as possible [59]
   • Hope for their child's survival [38]
   • Feeling hopeful to move forward in the struggle of maintaining the life of their child [41]
   • Parental hope for the child to live to adulthood [29]
   • Hope for live birth and bring child home [27]
   • Parental hope for their child to live longer [29]
   • Hope for a long life [29]
   • Hope to have time with alive children, even if it was a short time [27]
   • Parents hoped that the child would be with them for a long time and have a good life [27]
   • Parental hope to spend as much time as possible with their child and have their son in the best possible health for as long as possible [29]
   • Grasping at the hope of prolonging life [35]
   • Hope the progression of the condition may be slowed [59]
   • Hope as the basic principles for parents in the treatment phase and a positive attitude regarding their child's survival [38]
   • Holding onto hope for medical breakthroughs [8]
   • Clinging to hope for research and news of phenomenal new clinical trials [49]
   • Parents hope that scientists will find a cure for cancer and will continue research [29]
4. Parent-focused hope

   • Parent-focused hopes included "hope that I will find some meaning in all of this" ("extremely important"), "hope that my child's oncologist will be there for us", and "hope that I will get through this time" [54]
   • Hope for improvement of the home-based pediatric palliative care [15]
   • Parental hope for the child would fight and that would fight with him or her [27]
   • Parental general sense of hopefulness and specific hopes at time of diagnosis [54]
   • Parents reported being extremely hopeful in general at baseline [54]
   • Parental hopefulness combings with many hopes [54]
   • Hopes for the future could be concrete [16]
   • Parental hope as not limited to hope for a cure/response to treatment [29]
   • Hope remained when a good outcome could not be expected anymore and confidence disappeared [38]
   • If parents experienced a loss of hope of a cure, they still grasped at the hope of life extension and were concerned about the quality of life that their child had [35]
5. Hope for quality of life

   • Hope percentages increased over time for quality of life, future well-being, and broader meaning [24]
   • Parental hopes related to cure or treatment response, to quality of life, normalcy, and love and relationships for the child [29]
   • Hope for children well-being included: "hope that my child will be cured of cancer", "hope that my child will always feel loved", "hope that I will always do everything I can for my child", and "hope that my child will have the best quality of life possible" [54]
   • Providing hope for the child's future quality of life [49]
   • Parental hope for having good memories with the child [29]
   • Parental hope for their son will live many years happily and in the best possible health, without too much impact on the quality of life [29]
   • Hope for more quality time with the child [19]
   • Maintaining hope by finding ways to optimize the child quality of life [49]
   • Hopeful ways of sustaining the child's quality of life [49]
   • Parental hope that the child would feel loved, that the child would have the best possible quality of life and that they would always do all they could for the child [54]
   • Parental hope for their child to feel loved and to have good relationships [29]
   • The mother hopes her son will feel loved by his family and friends in order to support his own sense of courage [59]
   • Hope that my child will always feel loved [54]
   • Hope to be able bring the child home an raise and care her in family [27]
   • If parents experienced a loss of hope of a cure, they still grasped at the hope of life extension and were concerned about the quality of life that their child had [35]
   • Parental hope for the child to be happy and satisfied [35]
   • Parental hope focused on the child's well-being [29]
   • Some hopes were preliminary focused on the child's well-being [54]
   • Hope for the child would not suffer in any way [27]
   • Parental hope the child would live with them and not suffer [27]
6. Hope for specific outcomes/moments

   • Mother hopes her son will have a gastric tube [30]
   • Hope focusing on small improvements [38]
   • Hope for improvement through surgery, but no real improvement expected [59]
   • Hope for control [59]
   • Hope for a good rest [59]
   • Hope for a peaceful night [59]
   • Hope for regular feedings [59]
   • Hope for a rest while caring for a terminally ill child [59]
   • Mother's hope that her son's health will not worsen [59]
   • Hope for a child to return home [59]
   • Mother hopes she won't get a call from the hospital telling her baby is dead (neonatal care) [59]
   • Hope for something to not happen (tumour/cancer) [18]
   • Parental hope that the child doesn't spike a fever and has to come back [12]
   • Finding hope in the present moments [29]
   • Atmosphere of hope (they enjoy and share their child's activity) [29]
   • Present and more intense hope when parents perceived a worsening situation during the treatment trajectory[38]
   • Hope for improvement of the child’s situation [29]
   • Hope for their child to get better [29]
   • Maintaining hope for a good/positive outcome [58]
7. Hope as choice

   • Hope as a choice in the context of imminent death [59]
   • The idea of hope existing no matter what and the decision to choose hope over despair [59]
   • New hope [56]
   • Hope for something and then it doesn't happen, but you have to deal with it when it comes and breathe new hope into it [56]
8. Hope fluctuation

   • Fluctuating hope [5]
   • Hopefulness fluctuated based on what was happening during their child's treatment [12]
   • The fluctuations between hope and hopelessness in a world changed by illness are the experience of family of a child and/or adolescent in palliative care [41]
   • The fluctuation is accompanied by a sort of hope without any expectation of positive results [59]
   • Transitioned hope [11]
   • Hopes change over time and that hopeful thinking and affect predict changes in parent decisions over time [23]
   • The specific parental hopes vary over time [24]
   • Hopes may change over time [25]
   • Hopes and concerns of parents of children with serious illness change over time [23]
9. Hope transition and redirection

   • Changing hope from "to cure her completely … … return her health, and let her walk to school" to "if she could not wake up … … at least she could survive" [33]
   • Redirecting hope from cure and survival to comfort and well-being [51]
   • Hope gets through this with the least amount of pain, agony, and discomfort as possible [12]
   • Present and more intense hope when parents perceived a worsening situation during the treatment trajectory [38]
   • Hope for their child to get better [29]
   • Hope for improvement of the child's situation [29]
   • Constant uncertainty between accepting this finality (of life) and hoping for an improvement in their child's life [36]
10. Maintaining hope despite poor prognosis

    • Hope remained when a good outcome could not be expected anymore and confidence disappeared [38]
    • Very great parental hope even when the prognosis was poor [58]
    • Never losing hope [19]/keeping hope possible [56]
    • Maintaining hope despite the child's serious condition [29]
    • Parental hope was still kept despite the poor prognoses [58]
    • Parental hopefulness persists over time, even when the prognosis is poor [58]
    • The majority of parents reported being extremely hopeful regardless of the child's prognosis [54]
    • Hopefulness did not significantly change over time, and most parents reported being extremely hopeful regardless of prognosis [54]
    • The proportion of parents considering themselves "extremely" hopeful did not change significantly over time [54]
    • Parental hope was stable over time [58]
11. Hope against hope

    • Hope against that what will most likely happen [29]
    • Mothers have always this tiny silver of hope, they don't accept the fact that there is a very small possibility for their child to live [31]
    • For most parents, expectations about prognosis were not aligned with their hopes for the child (many parents hoped for a cure and also reported that they did not believe cure was possible) [29]
    • Parental hopes differed from their expectations of what was likely to happen [29]
    • Hope is an uncertain positive expectation, which became manifest as an intense parental feeling focused on the child's survival [38]
12. Hope as a coping mechanism

    • Hope as essential for parental coping and wellbeing [53]
    • Hope is essential during cancer [55]
    • Hope as something important to parents [9]
    • Significance of hope to coping with parenting a seriously ill child [9]
    • Hope as a crucial element in enduring the difficulties treatment facing throughout treatment [2]
    • Significance of hope to coping with parenting a seriously ill child [9]
    • Hope as a life-sustaining and essential process [49]
    • Hope as determining factors for the family to continue fighting for the life of their child in a context of uncertainty, anguish and suffering, due to the medical condition of the child [41]
    • Hope as important in coping with their child's illness [12]
    • Hope as something what facilitates coping with challenges [9]
    • Hope is the primary and final strategy the mother uses to cope with her fear, anxiety, and concerns [59]
    • Hope as beneficial [11]
    • Parental hope as a way of managing their daily lives [19]
    • Hope is something that deviates from the fear of losing their child and keeps the family focus of care for the child [41]
    • Hope as a support given by parents to children that helps them understand the new reality [56]
    • Encouraging their child to remain hopeful [33]
    • Sustaining the hope of the recovery [41]
    • Protecting hope by didn't want their healthcare providers to give them bad news [33]
    • Searching for hopeful messages from the healthcare providers to confirm their hope [33]
    • Mother lets herself get her hopes up [59]
13. Positive factors influencing hope

    • Parental hope increasing with getting information [12]
    • Feeling hopeful thanks to physician who provided high-quality information [37]
    • Hopeful parental attitude developed by knowing important information about children cancer and its treatment [43]
    • Hope based on educating themselves about their child's illness [56]
    • Hopefulness of parents increasing by caring actions toward their child [12]
    • Hope as strongly reflected in emotions that were shared between parents and providers [30]
    • Supporting hope manifested as emphasizing positives, demonstrating curative intent [53]
    • Child's hope, strength, and optimism helped parents not to give up on doing everything they could to assure their child's survival [38]
    • Nourishing hope by parents who cherished past successes, such as when their child recovered from a similar life-threatening situation [38]
    • Sustainability of hope based on the development of celebrating little successes [56]
    • Hope as a positive experience, connected with participants faith [4]
    • The model included hope, uncertainty, and spirituality [6]
    • Parental hope based on self-caregiving [56]
    • Hope like the positive reinforcements [4]
14. Negative factors influencing hope

    • Hope is weakened by uncertainty [20]
    • Impaired hope caused by lack of information and uncertainty [45]
    • Hope threatened by excessive optimism or a lack of information [45]
    • Greater hope as a way of reducing uncertainty [49]
    • Incomplete ability to share hopes and worries reported by parents [18]
    • Parental hope decreased due to negative news [12]
    • All parents hopes were shattered by the recurrence of the disease [35]
    • Parents confidence in the hope of a cure collapsed [35]
    • Hope of a cure shattered [35]
    • Being away of hope because of poor results of child's treatment [20]
    • Parental hope affected by the risk of metastasis as very high, and the fact that this was a type of disease that responds late to treatment [32]
    • Hope was diminished by factors such as uncertainty, confronting challenges, the fear of their child's potential death, and financial strains [32]
    • Declining hope as associated with simultaneous strong negative emotions of fear, helplessness, loneliness, and isolation [30]
    • Parental hope tempered/is lowered by fear of disappointment [58]
    • Diminished hope was reported by parents who had difficulty adapting to the news of their child's diagnosis (cancer) [47]
    • Taking no hope from the good things told by clinicians (because parents are convinced they are lying) [45]
    • Mother's critique of doctors for not giving her hope regarding her daughter's recovery [2]
    • Parents notice the doctor loses hope [30]
15. Shattered Hope

    • Parents confidence in the hope of a cure collapsed [35]
    • Hope of a cure shattered [35]
    • All parents hopes were shattered by the recurrence of the disease [35]
    • Losing hope for a cure [35]
    • No further hope for a cure a child [55]
    • Hopelessness as a one of the parent's experience after child cancer diagnosis [10]
    • The fluctuations between hope and hopelessness in a world changed by illness are the experience of family of a child and/or adolescent in palliative care [41]
    • Loss of a longed-for future, hopes and plans [14]
    • Giving up hope [14]
    • Hope is destroyed by the child's wish to die [32]
    • Parents would constantly experience the torture of intertwined hope and desperation and as a consequence felt pain as death approached [35]
    • Conflict between hope and the parents' realization that their child's life will finally be coming to an end [36]
    • Difficulties and confusion wavering between hope and understanding the finality of the end [36]
    • Constant uncertainty between accepting this finality (of life) and hoping for an improvement in their child's life [36]
16. Hope Domains and Components

    • Hope domains: quality of life, suffering, physical body, medical knowledge, length of life, miracle or cure and medical care [26]
    • Low hope = agency hope (beliefs about initiating and maintaining movement toward goals) and pathway hope (beliefs in one's capabilities to produce workable strategies towards goals) were significantly correlated (2 subscales of the Trait Hope Scale) [47]
    • Pathways hopeful thinking may be more important than agency hopeful thinking [23]
    • Disease-directed and non–disease-directed hopes [29]
    • Parents were endorsed hopes in the miracles or cures domain, respectively, and in the length of life domain [26]
    • Parents reported hopes in the domains of quality of life, physical body, future well-being, and medical care [24]
    • Hope as expressed [18]
    • Hope as knowing that everything will be ok [12]
    • Hope is an uncertain positive expectation, which became manifest as an intense parental feeling focused on the child's survival [38]
    • Hope as an expression of trust, positivity, or desire independent of naturalistic justification [58]
    • Space holding for hope [48]
    • Hope could not be rated [12]
    • Hope is strongly linked to positive values such as courage and fortitude [59]
    • Hope is one element of a sense of positive personal development [58]
    • Hope as tied to the mother's concerns [59]
    • Parental hope for the ill child is affecting their relationship (with medical staff) [30]
    • Mother's hope heroic [59]
    • Hope is "just reality" [12]
    • Well of hope as a situation when outcome are good [45]
17. Parental Actions Based on Hope

    • Mother's hope as an optimistic future in providing care for a child [8]
    • Hope that parents somehow can learn more, run faster, do better things and keep their children alive [59]
    • Parents hope reflects their belief that behaviour would be an expression of their child's strength and vitality [59]
    • Parental hope for their son will live many years happily and in the best possible health, without too much impact on the quality of life [29]
    • Hope of older mothers having children with less ability to ambulate [6]

As the result of coding procedure, 2 additional themes emerged which were not related to our research questions. They were elaborated separably as Figs. 6, 7 (‘SmartArt’).

Fig. 6.

Parental hope in religious and spiritual context

Fig. 7.

Hope and its metaphors

Results

After synthesising the findings, four themes relevant to our topic emerged: ‘False and realistic versus unrealistic hope’ (Fig. 2), ‘Evolution of parental hope as a child’s illness progresses’ with 17 subthemes (Fig. 3), ‘Parental hope and decision-making in PPC’ (Fig. 4) and ‘Social and structural determinants of parental hope’ (Fig. 5).

Theme one: False and realistic versus unrealistic parental hope

Realistic hopes mean that parents hope for achievable things for their children in the future, while unrealistic hopes, wishes or dreams relate to some sort of miracle, such as God healing their child regardless of the disease's stage [2], or being hopeful about future treatment trials and positive outcomes for their children despite there being no proven diagnostic results [1, 17, 49]. According to one study, parental hope for a cure is realistic when based on a positive response to treatment at the initial manifestation of the disease [29]. However, hope for a positive prognosis based on wishful thinking can become unrealistic when parents cling to it despite knowing it is not realistic [37, 51, 59]. Therefore, having hope does not necessarily mean being unrealistic or in denial about the situation (i.e. the child's condition) [22].

Several authors state that it is essential for healthcare providers to give parents realistic information while maintaining their hope, as communication and support from clinicians can give parents realistic hope even when a cure is not possible. Moreover, several authors claim that parents prefer clinicians to be straightforward with them, without sugar-coating the truth, as they need to know what to expect [2, 27, 28, 30, 32, 45, 54]. Additionally, other studies have shown that honest communication is one of the basic components of hope [20, 52], as it helps parents to make the best choices for their child and family [20]. Nevertheless, the studies showed that parents have expressed concern about the level of honesty in communication with clinicians, who, in their opinion, should provide truthful and sensitive information to help parents avoid false hope [31, 52].

Theme two: evolution of parental hope as a child’s illness progresses

Sub-theme one: hope for cure/recovery

When it comes to diagnosis, hope for a cure and recovery seems to be the fundamental form of parental hope. Despite the doctor's diagnosis, parents seem to hope for their child's recovery [2, 29, 38, 43, 54]. According to one study, hope is defined as an earnest expectation of complete healing for sick children [5].

Sub-theme two: hope for treatment response

Another parental hope is that the treatment will be effective [29] and that the outcome will be positive [5, 33, 38]. Parents also hope that their child will live a long life and that the illness will respond to treatment. They also hope for life prolongation [29]. Furthermore, parents are reported to hope for disease stabilisation and for their child to lead a normal life, overcoming the disease in the long term [29].

Sub-theme three: hope for survival/life extension

In PPC, parents often cling to the hope that their child will live for as long as possible [27, 29, 35, 59]. They hope for their child's survival [38] and feel hopeful about moving forward in their struggle to maintain their child's life, holding onto hope for medical breakthroughs [8, 29, 41, 49]. One study states that parents hope for a live birth, to bring their child home, and to have time with their living children, even if it is short [27]. Parents hope to spend as much time as possible with their child [29] and to slow the progression of the condition [59]. Hope appears to be a fundamental principle for parents during treatment and a positive attitude towards their child's survival [38].

Sub-theme four: parent-focused hope

Parent-focused hopes included "hope that I will find some meaning in all of this" ("extremely important"), "hope that my child's oncologist will be there for us", and "hope that I will get through this time" [54]. Several studies have shown that, at baseline, parents are generally hopeful, with many hopes such as improvement in their child's health, hope for the future and a cure [15, 16, 29, 54], and that their child will fight alongside them [27]. However, hope persisted even when a positive outcome was no longer expected and confidence had disappeared [38]. Even when they lost hope of a cure, parents still clung to the hope of extending their child's life and were concerned about their quality of life [35].

Sub-theme five: hope for quality of life

Some studies indicate that hope percentages increased over time with regard to quality of life, quality of time spent with the child, future well-being and broader meaning (e.g. that the child would not suffer in any way) [19, 24, 27, 29, 49].

Hope for the well-being of children included: 'Hope that my child will be cured of cancer', 'Hope that my child will always feel loved', 'Hope that I will always do everything I can for my child', and 'Hope that my child will have the best possible quality of life' [54]. Parents hope that their child will feel loved, have the best possible quality of life, and that they will always do everything they can for their child [27, 29, 54, 59]. Even if parents lost hope of a cure, they still clung to the hope of extending their child's life and were concerned about their child's quality of life [35].

Sub-theme six: hope for specific outcomes/moments

Many studies have shown that parents in PPC have hopes for small improvements, such as having a gastric tube for their child, controlling symptoms, getting a good rest, having a peaceful night, having regular feedings and having their child return home [12, 29, 30, 38, 58, 59]. Studies also report that parents hope that certain things will not happen, such as the child developing cancer [18], or the mother receiving a call from the hospital informing her that her baby has died [59]. Parents find hope in the present moment [29]. However, hope can intensify when parents perceive a worsening situation during treatment [38].

Sub-theme seven: hope as choice

As mentioned in two studies, hope can be a parent's choice in the context of their child's imminent death [59]. This is the idea that hope can exist no matter what, and that parents can choose hope over despair. Even if their hopes are not realised, parents must deal with the situation as it arises and breathe new hope into it [56].

Sub-theme eight: hope fluctuation

Many studies describe the fluctuation between hope and hopelessness experienced by families of children in PPC [5, 11, 12, 41, 59]. Hopes change over time, with hopeful thinking and emotions predicting changes in parental decisions [23–25].

Sub-theme nine: hope transition and redirection

The studies state that changing the hope of a cure for a child to the hope that the child will survive, that they will be comfortable and that they will get better could redirect hope for a cure to hope for comfort care and the child’s well-being [29, 33, 51]. Parents hope that their child will experience the least amount of pain, agony and discomfort possible during treatment [12]. However, they expressed more intense hope when they perceived a worsening situation during treatment [38]. The constant uncertainty of accepting the finality of life while hoping for an improvement in their child's condition encourages parents to transform their hope into things that are good for their child [36].

Sub-theme ten: maintaining hope despite poor prognosis

As mentioned above, parental hope persisted even when a positive outcome was no longer expected and confidence had disappeared [38]. Furthermore, the majority of parents reported feeling extremely hopeful, regardless of their child's prognosis [19, 29, 54, 58]. The proportion of parents who considered themselves hopeful did not change significantly over time [54]. Bally et al. developed a theory-based psychosocial intervention called the 'Keeping Hope Possible Toolkit', which could help parents to manage their hope by accepting reality, establishing control, restructuring hope and engaging in positive thinking [56].

Sub-theme eleven: hope against hope

In our review, this form of 'hope against hope' was reported by parents whose expectations about the child's prognosis were not aligned with their hopes for them. Many parents hoped for a cure, yet also reported that they did not believe a cure was possible [29]. One mother said that she had always held onto this tiny glimmer of hope and refused to accept that there was a very small possibility that her child could survive [31]. Hope was reported as an uncertain positive expectation which manifested as an intense parental feeling focused on the child's survival [38].

Sub-theme twelve: hope as a coping mechanism

The studies included in the review suggest that parents use hope as a coping mechanism in response to their child's illness. Hope was reported as an important factor in parental coping and well-being [9, 12, 53, 55, 59], and as a crucial element in enduring the difficulties of treatment [2]. Furthermore, hope was identified as a factor that facilitates coping with challenges [9] and influences families' decisions to continue fighting for their child's life amid uncertainty, anguish, and suffering caused by their child's medical condition [41]. Parental hope enables parents to manage their daily lives [19] and helps them to overcome the fear of losing their child, maintaining the family's focus on caring for the child [41]. Studies show that parents see hope as a source of support that helps them to understand their child's new reality [33, 56]. Some parents claim that they do not want their healthcare providers to give them bad news [33]. They also seek hopeful messages from healthcare providers to reinforce their hope [33].

Sub-theme thirteen: positive factors influencing hope

Parents reported that their hope increased when they received information, and they thanked the physician who provided high-quality information [12, 30, 37, 43]. They also noticed an increase in hope based on educating themselves about their child's illness, caring for their child, and practising self-care [12, 56].

Parents indicated that a supportive form of hope was manifested by clinicians emphasising the positives and demonstrating curative intent [53]. Furthermore, their child's hope, strength and optimism helped them to persevere in doing everything they could to ensure their child's survival [38].

Parents who cherished past successes, such as when their child recovered from a similar life-threatening situation, nourished hope in other parents [38]. Similarly, hope was sustained by celebrating small successes [56]. Some parents described hope as a positive experience connected with faith, as well as positive reinforcement [4].

One study examined the relationships between uncertainty, hope, spirituality and coping efficacy in mothers of children with Duchenne/Becker muscular dystrophy and found that hope appears to be a key factor in shaping uncertainty appraisals and facilitating coping efficacy [6].

Sub-theme fourteen: negative factors influencing hope

Several studies have reported that parental hope is weakened by uncertainty and a lack of information, as well as by negative news, challenges, the fear of their child potentially dying, the fear of disappointment, financial strain, the recurrence of the disease, feelings of helplessness, loneliness and isolation [12, 20, 30, 32, 35, 45, 58]. Diminished hope was reported by parents who had difficulty adapting to the news of their child's cancer diagnosis [47]. Some parents were unable to take hope from positive things said by clinicians because they were convinced that they were lying [45].

Parents reported noticing that, in certain situations, doctors lose hope [30]. One mother criticised doctors for not giving her hope regarding her daughter's recovery [2]. However, greater hope was found to reduce parental uncertainty [49].

Sub-theme fifteen: shattered hope

In the context of PPC, parents reported that their confidence in the hope of a cure had collapsed when the disease recurred [35, 55]. They noticed that they were experiencing feelings of hopelessness following their child's cancer diagnosis [10, 41]. They also claimed to have lost a longed-for future, as well as their hopes and plans, and to have given up hope [14].

Parents constantly experienced the torture of intertwined hope and desperation, and consequently felt pain as death approached [35]. Additionally, some indicated conflict between hope and the realisation that their child's life would soon end, as well as difficulties and confusion in wavering between hope and acceptance of their child's imminent death [36]. Furthermore, parents reported feeling constantly uncertain about whether to accept this finality or hope for an improvement in their child's condition [36]. In one study, parental hope was destroyed by the child's wish to die [32].

Sub-theme sixteen: hope domains and components

In this review, several hope domains mentioned by parents can be identified, such as improving the child’s quality of life, hoping the child will not suffer, hoping the child will be in good physical health, hoping to gain enough medical knowledge to help the child effectively, hoping the child will live as long as possible, hoping for a miracle cure or hoping for recovery [12, 24, 26, 45]. Hopes can be disease-directed (cure, recovery) or non-disease-directed (quality time, meaningful experiences). Hope can also be an expression of trust, positivity or desire [18, 29, 58].

One study defined hope as an uncertain positive expectation that became manifest as an intense parental feeling focused on the child's survival [38]. Parents expressed hopes in the miracle or cure domain and the length of life domain, respectively [26]. One study indicated that the correlation between beliefs about initiating and maintaining movement towards goals, and beliefs in one's capabilities to produce workable strategies towards these goals, was a useful strategy for managing parental hope [47]. Another study reported that pathways of hopeful thinking may be more important than agency of hopeful thinking [23]. What's more, hope has been found to be strongly linked to positive values such as courage and fortitude, and is tied to parental concerns; it can even be heroic [59]. In one study, hope was described as 'just reality' [12]. The important point to note is that a parents' hopes for their sick child affect their relationship with medical staff [30].

Sub-theme seventeen: parental actions based on hope

The final sub-theme contains information about parents' hopes, which reflect their belief that their children will be strong and full of vitality. Parents hope that their children will learn more, run faster, achieve more, and stay alive [6, 59]. They also optimistically believe that their children will live many happy and healthy years in the future, with minimal impact on their quality of life [6, 8, 29].

Theme three: parental hope and decision-making in PPC

The findings revealed that, when faced with complex decisions, particularly concerning new medical devices, goals of care or EOL scenarios, parents emphasise the critical importance of maintaining hope and faith [58]. Hope, spiritual faith and perseverance influence decision-making regarding the care of a sick child [2, 24, 41, 42]. This sustained hope enables parents to justify their choices, often using heuristics such as prioritising the child's well-being by avoiding suffering or clinging to the belief that 'there's hope' [7]. Prioritising comfort over prolonged life can lead to difficult but necessary decisions, such as choosing Do Not Resuscitate status, a process termed 'transitional knowing' [11], or choosing chemotherapy over waiting in the hope that treatment will halt the progression of the illness [51]. Despite statistical realities, parents may cling to the hope of a miracle or a long, healthy and normal life for their child [29, 59]. According to one study, this cognitive dissonance – whereby parents remain hopeful yet realistic for their own sanity – is a common coping mechanism. [29].

There have been a few studies that have shown that hope influences practical decisions, enabling parents to focus on interventions that might facilitate discharge to a home setting [30]. Furthermore, the decision to continue providing PPC can be directly linked to parents' desire to hold onto hope [36]. However, retrospectively viewing treatment decisions made in the hope of a cure that ultimately resulted in increased suffering can be a profound source of regret and one of the most challenging memories to cope with [38, 54]. The important point is that parents hope clinicians will understand their situation before commencing a discussion with a predetermined agenda [39].

Numerous studies have confirmed that positive and reassuring communication from medical staff consistently enhances parental hope [12, 19, 21, 32, 39]. Furthermore, building trusting relationships with healthcare providers gives parents hope and supports their decision-making processes [30, 34, 39, 46, 53, 54, 60]. Several studies have shown that there is a direct link between the quality of communication between physicians and parents, and the latter's hope and trust in clinicians [31, 37, 45]. Therefore, a supportive and focused approach from staff can give parents a great deal of hope [53]. Conversely, weak parent–provider relationships often lead to judgements about parents, which can cause emotional disconnection, reduce hope and make shared decision-making more difficult [30].

Parents often perceived poor communication from providers as a sign that they had lost hope for their child, which affected the parent – provider relationship [30]. When providers present a grim prognosis without offering any hope, parents may feel isolated in their own hope, which can impact their ability to make treatment decisions [30, 58]. Some parents with a child who has brain stem dysfunction avoided discussing hope in front of their child to prevent despair and protect their child's hope [33].

Theme four: social and structural determinants of parental hope

As the findings show, parental hope is supported by various programmes and services. For instance, the COMPLETE programme kept parental hope alive and helped parents adapt their focus and level of hope2 [21]. Advance Care Plans and the KHP Toolkit also helped parents to maintain hope, even in the event of a sudden deterioration in their child's condition [3, 4, 7, 9]. The PPC service fulfils hopes and dreams, supporting parents in long-term grieving [13, 14], as do therapeutic letters [19]. Maintaining hope for parents is possible by listening to the experiences of other parents and by educating themselves about their child's illness. This can help to instil hope and improve coping mechanisms. [56]. Studies have shown that support received from online communities, such as Facebook groups, also matters [49]. Beyond direct support, sharing personal narratives on social media can be a therapeutic and hope-inspiring mechanism [59].

One study found that parents who remained at home to care for their child exhibited higher hope scores than those in employment outside the home [57]. It has also been confirmed that finding support from others with similar experiences can provide parents with a vicarious sense of hope regarding their child's future quality of life [49].

Discussion

The concept of 'parallel planning' elaborated by Cowfer et al. could help parents acknowledge and accept their hopes (what they wish would happen) and their expectations (what they think will happen) [15]. It can be explained by the idea of hoping for the best while preparing for the worst, and it helps clinicians and parents manage the timeline of their patient's or child's illness [15]. This concept aligns with the findings of our systematic review, which highlight the crucial role of honest communication in the treatment process and ensure that parents are not given false or unrealistic hopes. Additionally, several studies included in our review suggest that parents value honest and realistic information on which their hopes and expectations are based, even if the worst-case scenario is anticipated (Figs. 2, 3).

The results suggest that ‘false hope’ can be created when clinicians withhold information or present overly optimistic scenarios to parents. ‘Realistic hope’ occurs when a cure is hoped for based on a child's positive response to medical treatment, or when parents receive information reflecting the correct medical prognosis from clinicians. 'Unrealistic hope' arises when parents persist in hoping for a cure, despite knowing deep down that this is not a realistic prospect. However, categorising and judging parental hope as either 'realistic' or 'unrealistic' could raise troubling ethical issues. This binary classification carries implicit moral judgements that may not align with the lived experience of parents whose child is facing a life-threatening illness. The results show that hope for a cure can be considered realistic when based on a positive response to treatment, but becomes unrealistic when parents cling to it despite knowing it is not realistic. This raises at least two ethical concerns. Firstly, this categorisation may reflect cultural and spiritual biases, as hopes for miraculous intervention or divine healing are often dismissed as 'unrealistic' from a purely medical perspective. This can marginalise religious and spiritual frameworks that are central to many families' coping mechanisms. Secondly, labelling parental hope as 'unrealistic' may constitute testimonial epistemic injustice [24], dismissing parents' experiential knowledge. We argue that managing these hopes through respect for parental authority is the ethical challenge. This involves transforming these hopes into a coping mechanism if necessary, particularly when a cure is no longer possible, and the only hope is to achieve a good quality of life or spend as much time as possible with a child.

When a child's long-term survival is in doubt, parents' hopes often shift from general aspirations to more specific concerns. At each stage, they could benefit from developing their caregiving skills. During these critical moments, the palliative care team plays a vital role in fostering hope within the family and supporting them in various ways. Parents who recognise their child's life-limiting prognosis are more likely to prioritise quality of life as their primary goal [15, 18]. Moreover, the systematic review by Hirata et al. emphasises the importance of integrating the values of all parties involved in treatment [35]. Our review supports these findings and acknowledges the need for further consideration of the cognitive dissonance involved in accepting the reality of PPC while maintaining hope for the sake of the parents' mental well-being. (Figs. 3, 4) Additionally, the main ethical dilemmas related to 17 sub-theme from the theme ‘Evolution of parental hope as a child’s illness progresses’ are listed in Table 3. Of the many possible ethical dilemmas, we have decided to list only one for each sub-theme, to provide a starting point for further research.

Table 3.

The ethical implications for continuity of care include the evolution of parental hope as a child's illness progresses

The ethical implications for continuity of care include the evolution of parental hope as a child's illness progresses
Hope for Cure/Recovery
Parents who cling to the hope of recovery may request continued curative treatment, even when medical professionals deem it to be futile. This creates a conflict between respecting parental authority in treatment decisions and the medical principle of non-maleficence, since continuing aggressive treatment may cause the child unnecessary suffering. Healthcare providers must balance parents' right to pursue all possibilities with their professional obligation to prevent harm and avoid treatments that offer no meaningful benefit
Hope for Treatment Response
Healthcare providers may feel pressured to present treatment options in overly optimistic terms in order to foster parental hope for positive outcomes. This creates a tension between therapeutic privilege, which involves withholding information to prevent psychological harm, and the ethical duty to provide accurate prognostic information. Inflating expectations can result in unrealistic hope, a delayed transition to palliative care and greater distress when treatments ultimately fail
Hope for Survival/Life Extension
Parents who cling to the hope that their child will live for as long as possible may prioritise life extension over quality of life. This creates an ethical dilemma: how to balance maximising survival time through aggressive interventions with ensuring the child's remaining time is comfortable and meaningful. The dilemma intensifies when life-prolonging treatments cause significant suffering, forcing parents to choose between their hope for more time and what is best for their child in terms of comfort
Parent-Focused Hope
Parents who hope that their child's oncologist will always be available may develop unrealistic or unsustainable expectations. This creates tension between meeting parents' emotional need for continuous support and maintaining appropriate professional boundaries. Healthcare providers must balance compassionate care with self-care and acknowledging their limitations, while parents' hope for unwavering support may lead to disappointment and a sense of abandonment
Hope for Quality of Life
Even when parents lose hope of finding a cure and shift their focus to improving quality of life, they may still harbour hopes of extending life. This can lead to tension when life-extending treatments also increase suffering or diminish quality of life. The ethical dilemma lies in balancing the hope that 'the child will not suffer in any way' with the hope of extending the child's life, when these goals may be incompatible
Hope for Specific Outcomes/Moments
Parents who are anxious about certain things happening (such as receiving a call to say that their baby has died) may experience anticipatory anxiety that could influence their decisions about care. This raises ethical questions about how to address these fears and negative expectations, such as whether to provide reassurance that may be false, implement monitoring that increases medicalisation, or help parents accept uncertainty. The challenge lies in supporting parents emotionally while avoiding interventions driven primarily by anxiety rather than medical benefit
Hope as Choice
Parents who choose to remain hopeful and try to find a way forward as situations arise may be reluctant to engage in advance care planning or discussions about end-of-life preferences. This creates a tension between respecting parents' choice to remain hopeful and the ethical obligation to plan appropriately for their child's death. Healthcare providers need to strike a balance between supporting hope as a coping mechanism and facilitating the necessary practical and emotional preparations
Hope Fluctuation
As hopes change over time and hopeful thinking influences changes in parental decisions, ethical questions arise regarding the optimal timing for critical treatment decisions. Making irreversible choices during periods of high hope may lead to regret, whereas decisions made during periods of hopelessness may not reflect a parent's enduring values. This creates uncertainty about when informed consent is most valid, and about how to ensure that decisions align with parents' enduring values rather than their temporary emotional states
Hope Transition and Redirection
Parents tend to express more intense hope when they perceive a deterioration in their child's condition during treatment. This creates an ethical dilemma regarding how to respond, namely whether to support intensified hope by continuing aggressive treatment, or to use the deterioration as an opportunity to discuss transitioning to comfort care. Healthcare providers are faced with the challenge of balancing respect for hope-driven requests with advocating for approaches that minimise suffering as death approaches
Maintaining Hope Despite Poor Prognosis
The development of interventions such as the 'Keeping Hope Possible Toolkit' raises ethical questions about whether healthcare systems should actively manage parental hope. While these interventions may help parents to cope, they also represent a form of psychological engineering which may not respect the authenticity of their emotional experiences as parents. The dilemma is determining whether hope management is a beneficial support service or an inappropriate attempt to manipulate parental psychology to achieve medical goals
Hope Against Hope
Parents who express hope for a cure while also saying they do not believe one is possible are demonstrating cognitive dissonance. Healthcare providers face the ethical dilemma of whether to address this inconsistency or allow it to persist. While challenging the contradiction could destroy a vital coping mechanism, allowing it to continue could lead to decisions being made based on hope rather than belief. This raises questions about the validity of informed consent when hope and belief diverge
Hope as a coping mechanism
In one study, parents admitted that their hope stems from a fear of losing their child, which helps to maintain the family's focus on caring for them [41]. This raises questions about whether hope that functions primarily as a means of avoiding fear represents healthy coping mechanisms or maladaptive denial. The ethical dilemma is whether healthcare providers should support hope as a means of avoiding difficult realities, or help parents confront their fears to enable more authentic end-of-life experiences
Positive factors influencing hope
Parents indicate that clinicians emphasising the positives and demonstrating curative intent supports their hopes. However, this raises ethical questions about whether such emphasis constitutes appropriate encouragement or misleading communication. The dilemma is determining whether emphasising positive aspects while downplaying negative realities serves parental well-being, or if it constitutes a form of deception that could lead to unrealistic expectations and poor care decisions
Negative factors influencing hope
Uncertainty and a lack of information can weaken parental hope, creating a dilemma about disclosing information. While providing complete information can reduce uncertainty, it can also diminish hope. Conversely, withholding information can preserve hope, but it increases uncertainty and anxiety. Healthcare providers thus face the challenge of navigating between transparency, which may undermine hope, and information management, which reduces uncertainty but could potentially deceive parents
Shattered Hope
When disease recurrence shatters parents' hopes of a cure, healthcare providers are faced with the dilemma of how to address this devastation. They must decide whether to rebuild hope around different goals, such as comfort and quality time, or allow parents to experience hopelessness as an authentic response to tragic circumstances. The ethical question is whether hope should always be preserved, or if accepting hopelessness can sometimes be a healthy way of acknowledging reality
Hope Domains and Components
Hope is linked to courage, fortitude and even heroism, suggesting that it becomes part of a parent's identity. However, this raises ethical concerns about whether parents may feel pressured to maintain hope in order to fulfil societal expectations of parental heroism, when acceptance might actually be a more appropriate response. The dilemma lies in balancing the support of authentic parental responses with the reinforcement of cultural narratives that may pressure parents to appear hopeful regardless of their genuine feelings or their child's situation
Parental Actions Based on Hope
The question of whether to gently challenge or support parents' optimistic belief that their children will live "many happy and healthy years in the future", despite a poor prognosis, is an ethical dilemma. The ethical dilemma lies in balancing respect for parental optimism as a coping mechanism with the need for realistic planning, bearing in mind that unfounded optimism could lead to decisions that do not serve the child's best interests during their remaining time

Regarding decision-making in PPC, values such as honesty and truthfulness can present problems for medical staff when it comes to delivering bad news to parents. Parents are a vulnerable group with rights and obligations to make EOL decisions on behalf of their child. Therefore, they are obliged to be provided with realistic prognoses, as their time with their child could be shortened. Cowfer et al. emphasise the importance of enabling families to decide how and when they receive information [15]. Campbell et al. also state that the clinical environment often makes it challenging for hope and death to coexist, perpetuating this problematic dichotomy [10]. Our review confirms these statements to some extent and highlights several ethical dilemmas, such as the tension between parental authority and caregiving when recognising the needs of seriously ill children, parental cognitive dissonance, and parents’ capacity to participate in shared decision-making or act in the best interests of children when there is no hope of finding a cure. Our review shows that weak parent–provider relationships lead to judgements about parents, causing emotional disconnection and reducing hope. This suggests that the quality of the therapeutic relationship has direct ethical implications for parental authority, hope maintenance, and decision-making capacity, and is not merely a matter of communication skills. The fact that parents want clinicians to understand their situation before starting the discussion, even when they have already decided what it will be about, suggests that they are concerned about whether current communication methods show respect for parental authority. The findings reveal significant power imbalances in the parent-provider relationship that have profound ethical implications. Parents interpret poor communication as a sign that providers have 'lost hope' for their child, which impacts the relationship and decision-making processes. When providers present grim prognoses without offering hope, parents may feel isolated in their hope. This creates a dynamic in which parents and providers are operating from fundamentally different emotional and epistemic positions (Fig. 4).

Understanding the significant role of parents' ability to recognise and meet their child's needs requires an appreciation of the dialectic of caring and not caring [26]. When there is no hope of a cure, parents who want their child to live as long as possible will expect effective medical and social care. The correlation between higher hope scores and parents who remained at home to care for their child, compared to those in employment outside the home, raises concerns about socioeconomic inequalities. Families with greater financial resources may be better placed to have a parent stay at home, which could result in hope and its associated benefits for coping and decision-making being more accessible to privileged families. Our review reveals issues related to equal access to supportive programmes that help parents deal with PPC, as well as equal access to the internet, where supportive groups for parents in similar situations could play an important role in sustaining hope. Furthermore, our review indicates that hope is not just a personal feeling, but is also influenced by social factors. These factors include support from other parents, online communities, educational resources, and specific programmes such as the COMPLETE programme and Advance Care Plans. The existence of these factors raises ethical questions about the importance of hope for coping and decision-making. If access to supportive programmes, peer networks and educational materials is unequal, this could result in disparities in terms of parental well-being and decision-making ability (Fig. 5). All the aforementioned ethical issues have the potential to serve as a starting point for future enquiries.

Strengths and limitations, risk of bias

This systematic review of the ethical issues in evidence-based literature is a methodological strength due to the use of validated standards (PRISMA protocols, grounded theory and using Critical Appraisal Skills Programme tool to evaluate the methodological limitations of the selected studies). To the best of our knowledge, this is the first systematic review to address the ethical issues surrounding parental hope in PPC. However, the use of exclusively English search terms may introduce a bias into the results obtained. Nevertheless, the findings of the present study are derived from a series of studies conducted in a variety of countries across multiple continents, thereby indicating a substantial geographic representation (see Table 2). The preponderance of recent publications indicates an emerging interest in the subject.

Conclusion

This review revealed that parental hope in PPC is a promising area for ethical research. Each of the four themes has the potential for further moral, theoretical and empirical exploration. Further exploration could benefit from the valuable viewpoints provided by moral principles based on parents' decision-making capacity and their struggle to save their child's life, as well as the positive attributes exemplified by the categories in Figs. 2, 3, 4, 5. The review's findings indicate that parents value honest encouragement over ‘false hope’. Additionally, hope can be used by parents as a cognitive heuristic that influences the decision-making process. Parents also expect clinicians to understand their situation and, at the same time, help them manage their hope with respect to parental authority. As a child’s illness progresses, parental hope evolves, provoking many ethical issues, such as whether to support all types of parental hope and, if so, how. Clinicians must also manage unrealistic parental expectations or beliefs concerning their child’s prognosis, avoiding testimonial epistemic injustice. Finally, support programmes and online groups that aid parental caregiving should be made available to all parents equitably. We believe that the moral beliefs expressed by parents in our review could help create values and standards for parents as caregivers in PPC.

Authors’ contributions

Marta Szabat formulated the research questions, conducted a literature search and screened and selected titles and abstracts in reporting to the PRISMA protocol. Additionally, she provided initial and focused coding according to Charmaz's constructed grounded theory. Finally, she wrote the main manuscript text and prepared all the figures and tables. Patrycja Zurzycka conducted a literature search, screened and selected titles and abstracts in reporting to the PRISMA protocol. She also prepared a database of abstracts and results of selected studies and provided initial and focused coding according to Charmaz's constructed grounded theory. All authors reviewed the literature search process at each stage, as well as the final manuscript.

Funding

The article processing charge was funded by internal funds of the Jagiellonian University Medical College.

Data availability

The datasets generated and analysed during the current study are available in the Mendeley Data repository: Szabat, Marta; Zurzycka, Patrycja (2025), “Parental hope in paediatric palliative care. A systematic review of the ethical issues in evidence-based literature”, Mendeley Data, V2, doi: 10.17632/3nvvbcvwmp.2 Link: https://data.mendeley.com/datasets/3nvvbcvwmp/2.

Declarations

Ethics approval and consent to participate

Not applicable.

Consent for publication

The authors give their consent for the publication of all materials included in the systematic review. We understand that this information will be publicly available online and may be used for commercial purposes.

Competing interests

The authors declare no competing interests.