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Purpose: Many patients prefer an active role in making decisions about their care and treatment, but participating in such decision-making is challenging. The aim of this study was to explore whether patient-reported outcomes (quality of life and patient satisfaction), patients’ coping strategies, and sociodemographic and clinical characteristics were associated with self-efficacy for participation in decision-making among patients with advanced cancer. Methods: We used baseline data from the ACTION trial of patients with advanced colorectal or lung cancer from six European countries, including scores on the decision-making participation self-efficacy (DEPS) scale, EORTC QLQ-C15-PAL questionnaire, and the EORTC IN-PATSAT32 questionnaire. Multivariable linear regression analyses were used to examine associations with self-efficacy scores. Results: The sample included 660 patients with a mean age of 66 years (SD 10). Patients had a mean score of 73 (SD 24) for self-efficacy. Problem-focused coping (B 1.41 (95% CI 0.77 to 2.06)), better quality of life (B 2.34 (95% CI 0.89 to 3.80)), and more patient satisfaction (B 7.59 (95% CI 5.61 to 9.56)) were associated with a higher level of self-efficacy. Patients in the Netherlands had a higher level of self-efficacy than patients in Belgium ((B 7.85 (95% CI 2.28 to 13.42)), whereas Italian patients had a lower level ((B −7.50 (95% CI −13.04 to −1.96)) than those in Belgium. Conclusion: Coping style, quality of life, and patient satisfaction with care were associated with self-efficacy for participation in decision-making among patients with advanced cancer. These factors are important to consider for healthcare professionals when supporting patients in decision-making processes. [ABSTRACT FROM AUTHOR]

Background: People with advanced cancer often suffer from various symptoms, which can arise from the cancer itself and its treatment, the illness experience, and/or co-morbid conditions. Important patient-reported outcomes such as functional status, symptom severity, and quality of life (QoL) might differ between countries, as countries vary with regard to contextual factors such as their healthcare system. Purpose: To assess self-reported emotional functioning, physical functioning, symptoms, and overall QoL in patients with advanced lung or colorectal cancer from six European countries, particularly in relation to their country of residence. Methods: We used baseline patient data from the ACTION trial, including socio-demographic and clinical data as well as patient-reported data regarding functioning, symptoms, and overall QoL (EORTC QLQ-C15-PAL). Results: Data from 1117 patients (55% lung cancer stage III/IV, 45% colorectal cancer stage IV) were used. The highest (worst) average symptom score was found for fatigue. We found similarities but also important differences in the outcomes across countries. The best scores (the highest for emotional functioning and QoL, the lowest for symptoms) were reported by Dutch and Danish patients. Belgian patients reported relatively low emotional functioning. Conclusion: The optimization of functioning, symptom relief, and overall QoL should be important objectives of healthcare professionals who take care of patients with advanced cancer. There are similarities, but also substantial differences across countries in functional status, symptoms, and overall QoL. Policymakers should take these differences into account and invest in offering health care catered to the needs of their population. [ABSTRACT FROM AUTHOR]

Preparing for future scenarios in pediatric palliative care is perceived as complex and challenging by both families and healthcare professionals. This interpretative qualitative study using thematic analysis aims to explore how parents and healthcare professionals anticipate the future of the child and family in pediatric palliative care. Single and repeated interviews were undertaken with 42 parents and 35 healthcare professionals of 24 children, receiving palliative care. Anticipating the future was seen in three forms: goal-directed conversations, anticipated care, and guidance on the job. Goal-directed conversations were initiated by either parents or healthcare professionals to ensure others could align with their perspective regarding the future. Anticipated care meant healthcare professionals or parents organized practical care arrangements for future scenarios with or without informing each other. Guidance on the job was a form of short-term anticipation, whereby healthcare professionals guide parents ad hoc through difficult situations. Conclusion: Anticipating the future of the child and family is mainly focused on achievement of individual care goals of both families and healthcare professionals, practical arrangements in advance, and short-term anticipation when a child deteriorates. A more open approach early in disease trajectories exploring perspectives on the future could allow parents to anticipate more gradually and to integrate their preferences into the care of their child. What is Known: • Anticipating the future in pediatric palliative care occurs infrequently and too late. What is New: • Healthcare professionals and parents use different strategies to anticipate the future of children receiving palliative care, both intentionally and unwittingly. Strategies to anticipate the future are goal-directed conversations, anticipated care, and guidance on the job. • Parents and healthcare professionals are engaged to a limited extent in ongoing explorative conversations that support shared decision-making regarding future care and treatment. [ABSTRACT FROM AUTHOR]

Advance care planning enables parents to discuss goals and preferences for future care and treatment of their seriously ill child. Although clinicians report parental factors as common barriers for advance care planning, parental views on reflecting on their child's future have had limited exploration. A clear understanding of their perspectives might help clinicians to implement advance care planning tailored to parental needs. This interpretive qualitative study using thematic analysis aims to identify how parents envision the future when caring for their seriously ill child. Single interviews and two focus groups were attended by 20 parents of 17 seriously ill children. Parents reported to focus on the near future of their child. However, their actions and deeper thoughts showed perspectives towards a further future. Future perspectives initial focused on practical, disease-related themes, but more existential elaborations, reflecting underlying life values, were also identified. Parents needed acknowledgement of their challenging situation, care tasks, and expertise as a precondition for sharing their deepest thoughts regarding the future of their child. Conclusion: When envisioning the future of their seriously ill child, parents tend to stay in the near future, whereas they value the opportunity to share further thoughts within a compassionate relationship with clinicians. What is Known: • Parents prefer open and honest information about their child's illness and prognosis and they value the concept of advance care planning, while they emphasize the need for an individualized approach. • Health care professionals see parental factors like unease and emotional burden as key barriers for advance care planning. What is New: • When envisioning the future of their seriously ill child, parents tended to stay close to the near future initially, with a focus on disease-related, practical themes. Ongoing conversations uncovered deeper, value-based elaborations towards the future. To engage parents in advance care planning, the future needs to be discussed in relation to the present and the past. • There is "no sharing without caring". Parents who felt cared for and acknowledged in their challenging context by clinicians, were open to share their perspectives on the future of their seriously ill child. To share deeper motives and values underlying goals and preferences for future care and treatment, parents need a stimulating attitude of listening and encouragement from clinicians to express their feelings. [ABSTRACT FROM AUTHOR]

Family involvement in healthcare decision-making for competent patients occurs to varying degrees in many communities around the world. There are different attitudes about who should make treatment decisions, how and why. Legal and professional ethics codes in most jurisdictions reflect and support the idea that competent patients should be enabled to make their own treatment decisions, even if others, including their healthcare professionals, disagree with them. This way of thinking contrasts with some cultural norms that put more emphasis on the family as a decision-making entity, in some circumstances to the exclusion of a competent patient. Possible tensions may arise between various combinations of patient, family members and healthcare professionals, and healthcare professionals must tread a careful path in navigating family involvement in the decision-making process. These tensions may be about differences of opinion about which treatment option is best and/or on who should have a say or influence in the decision-making process. While some relevant cultural, legal and policy considerations vary from community to community, there are ethical issues that healthcare professionals need to grapple with in balancing the laws and professional codes on decision-making and the ethical principle of respecting patients and their autonomy. This paper will highlight and propose that a partial resolution to these issues may lie in relational understandings of autonomy, which in principle justify interventions by healthcare professionals and family that support patients in decision-making. [ABSTRACT FROM AUTHOR]

Parenting and providing extensive care to a child with a life-limiting or life-threatening disease while being aware of the future loss of the child are among the most stressful parental experiences. Due to technical and medical improvements, children are living longer and are increasingly cared for at home. To align healthcare professionals' support with the needs of parents, a clear understanding of prominent experiences and main coping strategies of parents caring for a child in need of palliative care is needed. An interpretative qualitative study using thematic analysis was performed. Single or repeated interviews were undertaken with 42 parents of 24 children with malignant or non-malignant diseases receiving palliative care. Prominent reported parental experiences were daily anxiety of child loss, confrontation with loss and related grief, ambiguity towards uncertainty, preservation of a meaningful relationship with their child, tension regarding end-of-life decisions and engagement with professionals. Four closely related coping strategies were identified: suppressing emotions by keeping the loss of their child at bay, seeking support, taking control to arrange optimal childcare and adapting to and accepting the ongoing change(s).Conclusion: Parents need healthcare professionals who understand and carefully handle their worries, losses, parent-child relationship and coping strategies. What is Known: • In paediatric palliative care, parents have a daunting task in fulfilling all caregiving tasks while striving for control of their child's symptoms, a life worth living and a family balance. What is New: • Prominent experiences were: continuous management of anxiety of child loss, feelings of uncertainty, tension with end-of-life decision making and engagement with professionals. Parents experienced unique significance to their child, reinforcing a meaningful parent-child relationship. • Relevant coping strategies were: suppressing emotions, seeking support, taking control to arrange optimal care and adapting to the ongoing changes. • To provide tailored support, professionals need to understand parents' perceptions, relationship with their child and coping strategies. [ABSTRACT FROM AUTHOR]

Purpose: Survivors of critical illness often suffer from reduced health-related quality of life (HRQoL) due to long-term physical, cognitive, and mental health problems, also known as post-intensive care syndrome (PICS). Some intensive care unit (ICU) survivors even consider their state of health unacceptable. The aim of this study was to investigate the determinants of self-reported unacceptable outcome of ICU treatment.Methods: Patients who were admitted to the ICU for at least 48 h and survived the first year after discharge completed validated questionnaires on overall HRQoL and the components of PICS and stated whether they considered their current state of health an acceptable outcome of ICU treatment. The effects of overall HRQoL and components of PICS on unacceptable outcome were studied using multiple logistic regression analysis.Results: Of 1453 patients, 67 (5%) reported their health state an unacceptable outcome of ICU treatment. These patients had a lower score on overall HRQoL (EQ-5D-index value of 0.57 vs. 0.81; p < 0.001), but we could not determine a cutoff value of the EQ-5D-index value that reliably identified unacceptable outcome. In the multivariate analysis, only the hospital anxiety and depression scale was significantly associated with an unacceptable outcome (OR 2.06, 99% CI 1.18-3.61).Conclusions: Although there is a strong association between low overall HRQoL and self-reported unacceptable outcome of ICU treatment, patients with low overall HRQoL may still consider their outcome acceptable. The mental component of PICS, but not the physical and cognitive component, is strongly associated with self-reported unacceptable outcome. [ABSTRACT FROM AUTHOR]

Copyright of Huisarts En Wetenschap is the property of Springer Nature and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

In paediatric palliative care (PPC), parents are confronted with increasing caregiving demands. More children are cared for at home, and the need for PPC of children is lengthened due to technical and medical improvements. Therefore, a clear understanding of the content of parental caregiving in PPC becomes increasingly important. The objective is to gain insight into parental caregiving based on the lived experience of parents with a child with a life-limiting disease. An interpretative qualitative study using thematic analysis was performed. Single or repeated interviews were undertaken with 42 parents of 24 children with a malignant or non-malignant disease, receiving PPC. Based on their ambition to be a 'good parent', parents caring for a child with a life-limiting disease strived for three aims: controlled symptoms and controlled disease, a life worth living for their ill child and family balance. These aims resulted in four tasks that parents performed: providing basic and complex care, organising good quality care and treatment, making sound decisions while managing risks and organising a good family life.Conclusion: Parents need early explanation from professionals about balancing between their aims and the related tasks to get a grip on their situation and to prevent becoming overburdened. What is Known: • In paediatric palliative care, parents are confronted with increasing caregiving demands. • Parenting is often approached from the perspective of stress. What is New: • Parents strive for three aims: controlled symptoms and controlled disease, a life worth living for their child and family balance. • Parents perform four tasks: providing basic and complex care, organising good quality care, making decisions while managing risks and organising a good family life. • Professionals need insight into the parents' aims and tasks from the parental perspective to strengthen parents' resilience. [ABSTRACT FROM AUTHOR]

Copyright of Huisarts En Wetenschap is the property of Springer Nature and its content may not be copied or emailed to multiple sites or posted to a listserv without the copyright holder's express written permission. However, users may print, download, or email articles for individual use. This abstract may be abridged. No warranty is given about the accuracy of the copy. Users should refer to the original published version of the material for the full abstract. (Copyright applies to all Abstracts.)

The inclusion of children's samples in biobanks brings forward specific ethical issues. Guidelines indicate that children should be involved in the consent procedure. It is, however, unclear how to allocate an appropriate role for children. Knowledge of current practice will be helpful in addressing this issue. Therefore, we conducted an international multiple-case study on the child's role in consent procedures in pediatric biobanks. Four biobanks were included: (1) LifeLines, (2) Prevention and Incidence of Asthma and Mite Allergy (PIAMA), (3) Young-HUNT3 and (4) the Oxford Radcliffe Biobank contribution to the Children's Cancer and Leukaemia Group tissue bank (ORB/CCLG). Four themes linked to the child's role in the consent procedure emerged from the multiple-case study: (1) motives to involve the child, (2) informing the child, (3) the role of dissent, assent and consent and (4) voluntariness of children to participate. We conclude that biobank characteristics influence the biobank's motives to include children in the consent procedure. Moreover, the motives to include children influence how the children are involved in the consent procedure, and the extent to which children are able to make voluntary decisions as part of the consent procedure. This insight is valuable when designing pediatric biobank governance. [ABSTRACT FROM AUTHOR]

An introduction is presented in which the editor discusses various reports which further analyze vulnerabilityin certain healthcare and research interventions involving children and young persons.

Assent is a relatively young term in research ethics, but became an often mentioned ethical requirement in current pediatric research guidelines. Also, the European Society of Human Genetics considers assent an important condition for the inclusion of children in biobanks. However, although many emphasize the importance of assent, few explain how they understand the concept and few have elaborated on the underlying grounds. In this paper, we will discuss the different underlying ethical principles of assent. In the first category, assent appears to be derived from informed consent. This understanding is grounded in respect for autonomy and protection against harm. We conclude that this interpretation of assent is not of added value as a majority of children cannot be considered competent to make autonomous decisions. In addition, other safeguards are more appropriate to protect children against harm. The grounds from the second category can be classified as engagement grounds. These grounds do justice to the specifics of childhood and are of added value. Furthermore, we argue that it follows that both the content and the process of assent should be adjusted to the individual child. This can be referred to as personalized assent. Personalized assent is an appeal to the moral responsibility and integrity of the researcher. [ABSTRACT FROM AUTHOR]

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. [ABSTRACT FROM AUTHOR]

This study considers the range of thinking about end-of-life decisions (ELD) in France from a Dutch point of view, taking a small number of interviews with important French opinion-leaders as a basis. Until today, end-of-life care in France has been clouded with uncertainty pending the enactment of more specific definitions and regulations. French physicians could face a dilemma in treating a dying patient, caught between an official ban on ELD and a professional obligation to treat cases individually. The practical consequence of this climate is a lack of accountability of the French physician towards colleagues and patients. Rationalistic, paternalistic, and religious traditions have been obstructive to the adoption of regulatory reforms. In November 2004, Parliament accepted a law proposal by which the practice of the withholding and withdrawal of life-saving therapies would become more transparent, which would diminish the physician's fear of legal persecution. This proposal was then converted into law by the Senate. In the Netherlands, euthanasia - the active termination of life - is legal and regulated according to specific criteria. The Dutch approach has been shaped by an Anglo-Saxon emphasis on individual autonomy, and conforms to a broad preference in Dutch society to disclose and regulate controversial activities rather than to tolerate them sub rosa. As the Dutch regulations have been enacted, reporting rates - but not euthanasia cases - have risen. Compliance with the criteria and doctor-patient communication have been high. The French vigilance of professional autonomy provides a valuable example to the Dutch. The Dutch, in return, offer the French concrete examples for ELD policy. [ABSTRACT FROM AUTHOR]

A response from the author of the article "Clarifying assent in pediatric research," in the previous issue is presented.

The article offers the authors insights on the ethical aspects of the next-generation sequencing (NGS) which is anticipated to lead a new era in paediatric diagnosis and research. They say that NGS is a diagnostic tool that brings genetic information, but the ethical challenges is whether to disclose genetic risk information to parents of children or families undergoing NCS. They mention that the significance and scope of genetic risk information from NGS has changed.