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In pediatric oncology there are few examples of successful recruitment and retention strategies in psychosocial care research. This study aims to summarize experiences, challenges, and strategies for conducting randomized controlled trials (RCTs) of psychosocial intervention studies among children with cancer and their parent(s). We conducted a collective case study. To identify the cases, Pubmed and two trial registries were searched for ongoing and finished RCTs of psychosocial intervention studies for children with cancer and their parents. Online semi-structured expert interviews discussing recruitment and retention challenges and strategies were performed with principal investigators and research staff members of the identified cases. Nine studies were identified. Investigators and staff from seven studies participated, highlighting challenges and strategies within three major themes: eligibility, enrollment and retention. Regarding eligibility, collaborating constructively with healthcare professionals and involving them before the start of the study were essential. Being flexible, training the research staff, enabling alignment with the participants' situation, and providing consistency in contact between the research staff member and the families were important strategies for optimizing enrollment and retention. All studies followed a stepped process in recruitment.  Conclusion: Although recruitment and retention in some selected studies were successful, there is a paucity of evidence on experienced recruitment and retention challenges in pediatric psychosocial research and best practices on optimizing them. The strategies outlined in this study can help researchers optimize their protocol and trial-implementation, and contribute to better psychosocial care for children with cancer and their parents.  Trial Registration: This study is not a clinical trial. What is Known: • Performing RCTs is challenging, particularly in pediatric psychosocial research when both the child and parent are targeted. Recruitment and retention are common concerns. In pediatric oncology, there are few examples of successful recruitment and retention strategies in psychosocial care research. What is New: • Key strategies to collaborate constructively with healthcare professionals were outlined. Being flexible, training the research staff, alignment with the participant's situations and providing consistency in contact between the research staff member and the families were considered as essential strategies., (© 2023. The Author(s), under exclusive licence to Springer-Verlag GmbH Germany, part of Springer Nature.)

Background: Advance care planning supports patients to reflect on and discuss preferences for future treatment and care. Studies of the impact of advance care planning on healthcare use and healthcare costs are scarce., Aim: To determine the impact on healthcare use and costs of an advance care planning intervention across six European countries., Design: Cluster-randomised trial, registered as ISRCTN63110516, of advance care planning conversations supported by certified facilitators., Setting/participants: Patients with advanced lung or colorectal cancer from 23 hospitals in Belgium, Denmark, Italy, the Netherlands, Slovenia and the UK. Data on healthcare use were collected from hospital medical files during 12 months after inclusion., Results: Patients with a good performance status were underrepresented in the intervention group ( p < 0.001). Intervention and control patients spent on average 9 versus 8 days in hospital ( p  = 0.07) and the average number of X-rays was 1.9 in both groups. Fewer intervention than control patients received systemic cancer treatment; 79% versus 89%, respectively ( p < 0.001). Total average costs of hospital care during 12 months follow-up were €32,700 for intervention versus €40,700 for control patients ( p  = 0.04 with bootstrap analyses). Multivariable multilevel models showed that lower average costs of care in the intervention group related to differences between study groups in country, religion and WHO-status. No effect of the intervention on differences in costs between study groups was observed ( p  = 0.3)., Conclusions: Lower care costs as observed in the intervention group were mainly related to patients' characteristics. A definite impact of the intervention itself could not be established.

Objective: Clinicians' fears of taking away patients' hope is one of the barriers to advance care planning (ACP). Research on how ACP supports hope is scarce. We have taken up the challenge to specify ways in which ACP conversations may potentially support hope., Methods: In an international qualitative study, we explored ACP experiences of patients with advanced cancer and their personal representatives (PRs) within the cluster-randomised control ACTION trial. Using deductive analysis of data obtained in interviews following the ACP conversations, this substudy reports on a theme of hope. A latent thematic analysis was performed on segments of text relevant to answer the research question., Results: Twenty patients with advanced cancer and 17 PRs from Italy, the Netherlands, Slovenia, and the United Kingdom were participating in post-ACP interviews. Three themes reflecting elements that provide grounds for hope were constructed. ACP potentially supports hope by being (I) a meaningful activity that embraces uncertainties and difficulties; (II) an action towards an aware and empowered position; (III) an act of mutual care anchored in commitments., Conclusion: Our findings on various potentially hope supporting elements of ACP conversations provide a constructive way of thinking about hope in relation to ACP that could inform practice., (© 2022 The Authors. European Journal of Cancer Care published by John Wiley & Sons Ltd.)

Background: The ACTION trial evaluated the effect of a modified version of the Respecting Choices´ advance care planning programme in patients with advanced cancer in six European countries. For this purpose, an advance directive acceptable for all six ACTION countries to be used for documenting the wishes and preferences of patients and as a communication tool between patients, their caregivers and healthcare staff, was needed., Aim: To describe the development of a multinational cancer specific advance directive, the ´My Preferences form´, which was first based on the 2005 Wisconsin 'Physician Orders of Life Sustaining Treatment´ Form, to be used within the ACTION trial., Methods: Framework analysis of all textual data produced by members of the international project team during the development of the ACTION advance directives (e.g. drafts, emails, meeting minutes…)., Setting/participants: ACTION consortium members (N = 28) with input from clinicians from participating hospitals (N = 13) and ´facilitators´ (N = 8) who were going to deliver the intervention., Results: Ten versions of the ACTION advance directive, the ´My Preferences form´, were developed and circulated within the ACTION consortium. Extensive modifications took place; removal, addition, modification of themes and modification of clinical to lay terminology. The result was a thematically comprehensive advance directive to be used as a communication tool across the six European countries within the ACTION trial., Conclusion: This article shows the complex task of developing an advance directive suitable for cancer patients from six European countries; a process which required the resolution of several cross cultural differences in law, ethics, philosophy and practice. Our hope is that this paper can contribute to a deeper conceptual understanding of advance directives, their role in supporting decision making among patients approaching the end of life and be an inspiration to others wishing to develop a disease-specific advance directive or a standardised multinational advance directive., Competing Interests: The authors have declared that no competing interests exist.

Background: Many adolescent and young adult (AYA) survivors of childhood cancer are dealing with late effects of the cancer and its treatment., Objective: The aim of this study was to explore how AYA survivors cope with their childhood cancer experience and its long-term consequences., Methods: This is a descriptive qualitative study in which 21 semistructured interviews with AYA survivors of childhood cancer were conducted. A thematic analysis was conducted by a multidisciplinary research team and supported by NVivo 10., Results: Five coping strategies, which facilitated in living a normal life, of which some were developed during their cancer experience, were identified: (1) focusing on the "here and now," (2) refraining from discussing the cancer experience, (3) recalling and preserving positive memories, (4) redefining the impact positively, and (5) consolidating and preserving a sense of togetherness., Conclusions: Even long after completing treatment, the cancer experience remained deeply ingrained in AYA survivors' lives. Although they did not perceive their survivorship as a large problem in their current lives, coping with being a childhood cancer survivor did take effort. The deployment of specific coping strategies helped them to remain focused on the positive outlook in life and to deal with the long-term physical and psychosocial consequences of the cancer experience aimed at ultimately leading a normal life., Implications for Practice: This study emphasizes the current individual frame of reference of the AYA survivor as the point of departure for psychosocial support. Healthcare professionals are advised to acknowledge and respect the value and function of the AYA survivors' coping strategies used., Competing Interests: The authors have no conflicts of interest to disclose., (Copyright © 2020 Wolters Kluwer Health, Inc. All rights reserved.)

Background: Research has highlighted the need for evidence-based interventions to improve paediatric advance care planning (pACP) in adolescents with cancer. Although adolescents express the desire and ability to share their values, beliefs and preferences for treatment, there is a lack of structured multicomponent interventions to improve parent-adolescent communication on different ACP themes including those not limited to end-of-life care. The aim of this study is to evaluate the effectiveness and implementation, context and mechanisms of impact of a novel ACP program in paediatric oncology., Methods: We will conduct a multi-centre parallel-group randomised controlled superiority trial with embedded mixed-methods process evaluation in Flanders, Belgium. Adolescents aged 10-18 who have cancer, and their parent(s) will be recruited via all four university hospitals in Flanders, Belgium, and support groups. Families will be randomised to receive care as usual or the multicomponent BOOST pACP program, consisting of three conversation sessions between an external facilitator and the adolescent and parent(s). The primary endpoint is improved parent-adolescent communication from the perspective of the adolescent. Secondary endpoints are adolescents' and parents' attitudes, self-efficacy, intention and behaviour regarding talking about ACP themes with each other, parents' perspective of shared decision making in the last clinical encounter, and the paediatric oncologist's intention and behaviour regarding talking about ACP themes with the family. Measurements will be performed at baseline, at 3 months and at 7 months using structured self-reported questionnaires. We will perform a process evaluation in the intervention group, with measurement throughout and post-intervention, using structured diaries filled out by the facilitators, interviews with facilitators, interviews with involved paediatric oncology teams, and audio-recordings of the BOOST pACP conversations., Discussion: The BOOST pACP program has been developed to stimulate conversations on ACP themes between parent(s) and the adolescents, simultaneously lowering the threshold to discuss similar themes with healthcare professionals, initiating a process of normalization and integration of ACP in standard care. This combined outcome and process evaluation aims to contribute to building the necessary evidence to improve ACP in paediatric oncology., Trial Registration: The study is registered at ISRCTN, ISRCTN33228289 . Registration date: January 22, 2021., (© 2021. The Author(s).)

Anxiety is a common symptom in patients with advanced cancer. Early recognition of anxiety is difficult, especially when the physical condition of patients declines and patients are not able to verbally express about their concerns. Under these circumstances, informal caregivers may be a valuable source of information. The aim of this study was to explore anxiety in hospice inpatients with advanced cancer from the perspective of their informal caregivers. Fourteen informal caregivers were interviewed; 64% were women and the median age was 55 years. Informal caregivers assessed patients' anxiety as moderate to severe and identified a negative impact of anxiety on physical, psychological, social, and spiritual dimensions of the patients' lives. They indicated a variety of expressions of anxiety and mentioned physical and mental deterioration as an important source of anxiety. Informal caregivers recognized patients' needs as having a safe environment, presence of people around, and a sense of control over the situation. Although the patients' perspective is the gold standard, informal caregivers can be a valuable source of information in identifying anxiety and providing personalized support. Therefore, informal caregivers should be more involved in the care for anxious patients to improve early recognition of anxiety and to ameliorate anxiety management for this vulnerable patient population., Competing Interests: The authors have no conflicts of interest to disclose., (Copyright © 2021 by The Authors. Published by Wolters Kluwer Health, Inc.)

Background: Advance care planning (ACP) supports individuals to define, discuss, and record goals and preferences for future medical treatment and care. Despite being internationally recommended, randomised clinical trials of ACP in patients with advanced cancer are scarce., Methods and Findings: To test the implementation of ACP in patients with advanced cancer, we conducted a cluster-randomised trial in 23 hospitals across Belgium, Denmark, Italy, Netherlands, Slovenia, and United Kingdom in 2015-2018. Patients with advanced lung (stage III/IV) or colorectal (stage IV) cancer, WHO performance status 0-3, and at least 3 months life expectancy were eligible. The ACTION Respecting Choices ACP intervention as offered to patients in the intervention arm included scripted ACP conversations between patients, family members, and certified facilitators; standardised leaflets; and standardised advance directives. Control patients received care as usual. Main outcome measures were quality of life (operationalised as European Organisation for Research and Treatment of Cancer [EORTC] emotional functioning) and symptoms. Secondary outcomes were coping, patient satisfaction, shared decision-making, patient involvement in decision-making, inclusion of advance directives (ADs) in hospital files, and use of hospital care. In all, 1,117 patients were included (442 intervention; 675 control), and 809 (72%) completed the 12-week questionnaire. Patients' age ranged from 18 to 91 years, with a mean of 66; 39% were female. The mean number of ACP conversations per patient was 1.3. Fidelity was 86%. Sixteen percent of patients found ACP conversations distressing. Mean change in patients' quality of life did not differ between intervention and control groups (T-score -1.8 versus -0.8, p = 0.59), nor did changes in symptoms, coping, patient satisfaction, and shared decision-making. Specialist palliative care (37% versus 27%, p = 0.002) and AD inclusion in hospital files (10% versus 3%, p < 0.001) were more likely in the intervention group. A key limitation of the study is that recruitment rates were lower in intervention than in control hospitals., Conclusions: Our results show that quality of life effects were not different between patients who had ACP conversations and those who received usual care. The increased use of specialist palliative care and AD inclusion in hospital files of intervention patients is meaningful and requires further study. Our findings suggest that alternative approaches to support patient-centred end-of-life care in this population are needed., Trial Registration: ISRCTN registry ISRCTN63110516., Competing Interests: I have read the journal’s policy and the authors of this manuscript have the following competing interests: BH and LB are developers of Respecting Choices and report personal fees from Gundersen Health, outside the submitted work.

Objectives: There is a need to improve the assessment of emotional functioning (EF). In the international Advance Care Planning: an Innovative Palliative Care Intervention to Improve Quality of Life in Cancer Patients - a Multi-Centre Cluster Randomized Clinical Trial (ACTION) trial involving patients with advanced cancer, EF was assessed by a customized 10-item short form (EF10). The EF10 is based on the European Organisation for Research and Treatment of Cancer (EORTC) EF item bank and has the potential for greater precision than the common EORTC Quality of Life Questionnaire Core 30 four-item scale (EF4). We assessed the relative validity (RV) of EF10 compared with EF4., Methods: Patients from Belgium, Denmark, Italy, the Netherlands, Slovenia, and the United Kingdom completed EF10 and EF4, and provided data on generic quality of life, coping, self-efficacy, and personal characteristics. Based on clinical and sociodemographic variables and questionnaire responses, 53 "known groups" that were expected to differ were formed, for example, females versus males. The EF10 and EF4 were first independently compared within this known group, for example, the EF10 score of females vs the EF10 score of males. When these differences were significant, the RV was calculated for the comparison of the EF10 with the EF4., Results: A total of 1028 patients (57% lung, 43% colorectal cancer) participated. Forty-five of the 53 known-groups comparisons were significantly different and were used for calculating the RV. In 41 of 45 (91%) comparisons, the RV was more than 1, meaning that EF10 had a higher RV than EF4. The mean RV of EF10 compared with that of EF4 was 1.41, indicating superior statistical power of EF10 to detect differences in EF., Conclusions: Compared with EF4, EF10 shows superior power, allowing a 20% to 34% smaller sample size without reducing power, when used as a primary outcome measure., (Copyright © 2019 ISPOR–The Professional Society for Health Economics and Outcomes Research. Published by Elsevier Inc. All rights reserved.)

Background: Advance care planning is seen as an important strategy to improve end-of-life communication and the quality of life of patients and their relatives. However, the frequency of advance care planning conversations in practice remains low. In-depth understanding of patients' experiences with advance care planning might provide clues to optimise its value to patients and improve implementation., Aim: To synthesise and describe the research findings on the experiences with advance care planning of patients with a life-threatening or life-limiting illness., Design: A systematic literature review, using an iterative search strategy. A thematic synthesis was conducted and was supported by NVivo 11., Data Sources: The search was performed in MEDLINE, Embase, PsycINFO and CINAHL on 7 November 2016., Results: Of the 3555 articles found, 20 were included. We identified three themes in patients' experiences with advance care planning. 'Ambivalence' refers to patients simultaneously experiencing benefits from advance care planning as well as unpleasant feelings. 'Readiness' for advance care planning is a necessary prerequisite for taking up its benefits but can also be promoted by the process of advance care planning itself. 'Openness' refers to patients' need to feel comfortable in being open about their preferences for future care towards relevant others., Conclusion: Although participation in advance care planning can be accompanied by unpleasant feelings, many patients reported benefits of advance care planning as well. This suggests a need for advance care planning to be personalised in a form which is both feasible and relevant at moments suitable for the individual patient.

Background: When confronted with cancer, adolescents and young adults (AYAs) enter a psychosocial trajectory. Previous research has acknowledged the importance of care adjusted to the specific needs of AYAs. To develop AYA-focused care, in-depth knowledge about the experiences of AYAs with cancer is necessary., Objective: The purposes of this study were to discover the psychosocial experiences of and their meanings for AYAs enduring cancer, as well as its treatment and follow-up, and to capture the basic social psychological process that shaped these experiences., Methods: This was a qualitative study in which individual semistructured interviews were conducted with 23 participants aged 15 to 25 years., Results: A 3-phase process was identified, which demonstrated alterations in the AYAs' experiences and their underlying meanings: (1) maintaining normal life was essential, (2) normal life was slipping away, and (3) evolving toward a new normal life after treatment. Certain core dynamics were present in these 3 phases. Throughout the cancer trajectory, the AYAs attempted to maintain control, redefine the self, and incorporate their cancer experience to the long-term course of life and had varying expectations of their social networks., Conclusions: Understanding the process that AYAs with cancer go through and taking into account their experiences can facilitate better psychosocial care for this emotionally vulnerable population., Implications for Practice: Healthcare professionals need to take a patient-centered approach, with a focus on communication, to meet the needs of AYAs throughout the cancer trajectory.

Background: Adolescents and young adults with cancer face distinct psychosocial challenges because of the multiple developmental tasks associated with their age. Research on psychosocial care, directed to the unique needs and demands of this population, is limited., Objective: The aim of this study was to describe the psychosocial experiences of adolescents and young adults with cancer to further the understanding of the meanings they attribute to their experiences., Intervention/methods: This study used a qualitative design in which individual semistructured interviews were conducted with 23 participants aged 15 to 25 years., Results: Physical consequences of the disease and its treatment, loss of independence, and being alone were significant challenges. Major coping strategies of the participants were to avoid the possible threats to life and maintain a positive attitude and normal life. Participants were "directors" who took control in order to manage their illness, maintain a sense of control, and master their lives to the fullest extent possible., Conclusions: The concept of the "AYA (adolescent and young adult) director" provides insight for healthcare professionals to understand how adolescents and young adults experience cancer., Implications for Practice: Throughout the cancer experience, participants wanted to be treated as individuals with specific needs and preferences. They preferred circumstances they are accustomed to; some found it difficult to accept restrictions imposed by the hospital. Adolescents and young adults with cancer want to be involved in the way healthcare professionals communicate with them and the information they are provided.

Background: In pediatric oncology, many oncologists invite their own patients to participate in research. Inclusion within a dependent relationship is considered to potentially compromise voluntariness of consent. Currently, it is unknown to what extent those involved in pediatric oncology experience the dependent relationship as a threat to voluntary informed consent, and what they see as safeguards to protect voluntary informed consent within a dependent relationship., Aim: We performed a qualitative study among key actors in pediatric oncology to explore their experiences with the dependent relationship and voluntary informed consent., Methods: We conducted three focus groups and 25 semi-structured, in-depth interviews with pediatric oncologists, research coordinators, Research Ethics Committee members, parents of children with cancer, and adolescents with cancer., Results: Professionals regarded the dependent relationship both as a potential threat to and as a positive influence on voluntary decision making. Parents and adolescents did not feel as though dependency upon the oncologist influenced their decisions. They valued the involvement of their own physician in the informed consent process. The professionals suggested three strategies to protect voluntariness: emphasizing voluntariness; empowering families; involvement of an independent person., Conclusions: Although the dependent relationship between pediatric oncologists, patients and parents may be problematic for voluntary informed consent, this is not necessarily the case. Moreover, the involvement of treating physicians may even have a positive impact on the informed consent process. Although we studied pediatric oncology, our results may also apply to many other fields of pediatric medicine where research and care are combined, for example, pediatric rheumatology, neurology and nephrology. Clinical trials in these fields are inevitably often designed, initiated and conducted by medical specialists closely involved in patient care.

Background: Traditionally, in ethical guidelines and in research ethics literature, care and research are clearly separated based on their different objectives. In contrast, in paediatric oncology, research and care are closely combined. Currently, it is unknown how relevant actors in paediatric oncology perceive this combination of research and care. We conducted a qualitative study into the experiences of those involved in Dutch paediatric oncology with the intertwinement of research and care and the dual role of paediatric oncologists as researchers and treating physicians., Procedure: A qualitative study approach, using two focus groups and 19 semi-structured, in-depth interviews with paediatric oncologists, research coordinators, parents of children with cancer, and adolescents with cancer., Results: Four themes characterize how actors experience the intertwinement of research and care in paediatric oncology. First, research is considered of major importance, and paediatric oncology professionals convey this message to patients and their parents. Second, there is ambiguity about categorization of studies into cancer therapy as either research or treatment. Third, role conflicts appear within the work of the paediatric oncologists. Finally, the various benefits of combining treatment with research are emphasized., Conclusions: Research is regarded as a fundamental and indispensable characteristic of paediatric oncology practice. Paediatric oncology professionals, parents, and patients have a very positive outlook on combining research and care, but they may not be sufficiently critical with respect to potential conflicts. Increased reflection on how to optimally combine research and care could serve as an important protection of the interests of children with cancer and their parents., (© 2015 Wiley Periodicals, Inc.)

Objective: In pediatric oncology, parents want, and are expected, to act and decide in the best interest of their child. A recent qualitative study (PRESENCE study) indicated that parents had difficulty in doing so. The aim of this subanalysis was to describe and offer an explanation for the parents' actions in expressing and handling of "the voice of the child.", Method: A multicenter, qualitative research study comprising 37 interviews conducted with 34 parents of 17 children with incurable cancer, cared for at home, during the palliative phase. A thematic analysis was conducted., Results: The "voice of the child" becomes manifest in the parents' expressions of the child's needs and perceptions. Parents who actively searched to understand their child's inner perspective used direct and indirect strategies. Parents preferred indirect strategies when their child avoided talking or when they considered the conversation as threatening for the child, or for themselves. Even if the parents show an intense involvement in the care and support of their child; they can still have difficulty acknowledging the child's perspective. An inability to take into account the child's perspective was largely due to the parents' own struggle to cope with loss., Conclusions: Whether or not the voice of children approaching the end-of- life is heard, often depends on their parents' ability to give them a voice. Professional caregivers have a difficult task in supporting parents in giving their child his or her voice, while at the same time preserving their, and their parents', ability to cope., ((c) 2015 APA, all rights reserved).)

Purpose/objectives: To elucidate parents' experiences when caring at home for their child with incurable cancer and to show how parents give meaning to their experiences throughout the end-of-life (EOL) phase., Research Approach: Interpretative qualitative study., Setting: Five academic pediatric oncology centers., Participants: 42 parents of 22 children with incurable cancer, cared for at home., Methodologic Approach: An inductive thematic analysis of single and repeated open interviews using phenomenological techniques., Findings: Four EOL stages were identified: becoming aware of the inevitable death, making the child's life enjoyable, managing the change for the worse, and being with the dying child. The essence of parenting during those stages was captured by the notion of being meaningful to the child and preserving the parent-child relationship. Parents were able to cope better with the EOL phase and to sustain their parenting role because of their ability to postpone grief, enjoy their child's expressions of happiness, see the child's identity despite physical impairment, and enjoy the rewards they experienced from being there for their child., Conclusions: Parenting while losing a child brings parents to the point of an existential crisis. The child's deterioration forces parents to redefine their traditional parenting role. Although the way parents give meaning to their caregiving experience helps them cope, it can decrease their ability to acknowledge the child's needs., Interpretation: Nurses can help parents to face the reality of their child's situation and redefine their role accordingly, such as by providing information and alternative perceptions that fit the child's changed needs while preserving the parent-child relationship. Attention to signals indicating stress disorders is needed.

Purpose: For children with incurable cancer death usually is anticipated and preceded by a phase of palliative care. Despite recognition that parents have difficulty adapting to a palliative perspective there is little insight into this process. This study explored, from a parental perspective, the process parents go through when cure is no longer a possibility., Participants and Methods: A multicenter study using qualitative research was undertaken during the EoL phase. One-time and repeated open interviews were conducted with 44 parents of 23 children with incurable cancer., Results: Feelings of loss play a prominent role during the EoL phase. Dealing with loss is a process of stepwise relinquishing that becomes manifest in an internal struggle between preservation and letting go. Preservation means that parents try to maintain the child's status quo. Letting go means parents give up their resistance to loss in service of their child's well-being. Although the relative measure of each changes over time, parents have great difficulty making the transition because it implies a change in source of control. A timely completion of this transition positively influences the child's well-being as well as the evaluation of enacted parenthood., Conclusion: For parents the essence of the palliative process is not to accept death but to deal with the loss of their child. Although the need to avoid loss and gain control by means of preservation is fully understandable, the study indicated that parents who made the transition to letting go had an increased receptiveness of their child's real situation and needs.

Background: One in four cases of childhood cancer is incurable. In these cases death can usually be anticipated and therefore preceded by a phase of palliative care. For parents, preparing to let their child die is an extraordinarily painful process. Most struggle to preserve their child. This study identified, from a parental perspective, the main factors that influence the transition from preserving life to letting go., Procedure: A multi-centre, qualitative research, study was undertaken during the end-of-life (EoL) phase, comprising single or repeated interviews with 44 parents of 23 children with incurable cancer., Results: We discovered that uncertainty, fragmentation and anxiety underpin the preserving life perspective. A perspective of letting go could be supported by a variety of factors. These included: Certainty that the child cannot be cured, postponed grief, the perception of suffering, the ability to disentangle needs and the ability to parent meaningfully. Hope, creating a peaceful parent-child relationship, and the attitude of professionals, could support movements in either direction. Of these, certainty, and in most cases postponed grief, were pre-conditions for the transition towards letting go. Strategies such as not challenging the parents' suppression of grief, creating certainty about the child's condition and supporting parents in efforts to redefine their parental role, supported progress towards accepting a letting go perspective., Conclusions: Parents' internal struggle between a preserving frame of mind and one of letting go is influenced by a combination of factors. However, professionals can influence some of these factors in order to facilitate this transition., (Copyright 2010 Wiley-Liss, Inc.)