Article

What Constitutes the Best Interest of a Child? Views of Parents, Children, and Physicians in a Pediatric Oncology Setting

Authors:
  • Princess Maxima Center for pediatric oncology
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Abstract

Background: In pediatrics, the “best interest” standard has become the prevailing standard in decision making even though it proves difficult to apply in practice. Differences in values can lead to different views by families and physicians of what is in the interest of a child. Our aim was to gain insight into the views of parents, children, and physicians in a pediatric oncology setting. Methods: We conducted a qualitative multicenter study, using in-depth semistructured interviews, with 21 children aged 8–18 years undergoing cancer treatment, 26 parents, and 15 pediatric oncologists. Results: At the onset of treatment, parents, children, and physicians had the same views on what is in the interest of the child: survival by following the treatment protocol. In the course of treatment, however, a transition takes place. For families, what constitutes the best interests expands beyond medical considerations, to include the wish to lead a normal life, having control over certain aspects of treatment, and maintaining one's identity (e.g., through religion). These aspects sometimes collide with medical aspects, leading to different professional and familial views about what course of action is appropriate. Conclusions: In order to recognize personal views and avoid conflicts, physicians should explicitly discuss parent and family concerns and opinions in the course of treatment. We present a model of “communicative ethics” to make these issues a subject of discussion. The role of the family in determining what is in the best interest of the child should only be limited when it implies a substantial medical risk of (irreversible) harm to the child.

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... Darby et al., 2014;Klepping, 2012). Authors from institutions in Singapore (Pravin et al., 2019), Indonesia (Lina Mahayati et al., 2018), Malaysia (Dhanoa et al., 2010), Finland (Juvakka & Kylm, 2009), the Netherlands (De Vries et al., 2013), Greece (Pourtsidis et al., 2015), and Lebanon (Al-Gharib et al., 2015) had only one production each. ...
... In the present corpus, one article was published in 2009 (Juvakka & Kylm, 2009), three in 2010(i.e. Dhanoa et al., 2010Kamper et al., 2010), two in 2011 (Paisley et al., 2011;Wilson et al., 2011), one in 2012 (Klepping, 2012), one in 2013 (De Vries et al., 2013), four in 2014 (i.e. Lyon et al., 2014;Revuelta-Iniesta et al., 2014), six in 2015 (i.e. ...
... Kohi et al., 2019;Paisley et al., 2011); two had children, adolescents, family members, and health professionals (i.e. Darby et al., 2014;De Vries et al., 2013); nine focused on adolescents (i.e. Dhanoa et al., 2010;Lina Mahayati et al., 2018); one focused on teenagers and family (Lyon et al., 2014); five had adolescents and young adults (i.e. ...
Article
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This study aims to present the profile of scientific production on the use of religiosity/spirituality in coping with childhood cancer. It is an integrative review in the bases/libraries Cumulative Index to Nursing and Allied Health Literature (CINAHL), Psychology Information (PsycINFO), Pubmed, Scientific Electronic Library Online (SciELO), and Latin America and the Caribbean Literature on Health Sciences (LILACS) (2009–2019). The guiding question was “How is religiosity/spirituality present in the treatment experiences of children and adolescents with cancer?” By the inclusion/exclusion criteria, 31 studies were retrieved. Most studies are from the United States; 2015 was the greatest publication year, and the participants in these surveys were children, adolescents, family members, and health professionals. Most studies did not specify what the participants’ belief was. Interviews were the most used collection instruments, and the hospital environment was the main place for recruiting the subjects. The data found provide significant information for understanding the profile of scientific production related to the investigation of religiosity/spirituality in the experiences of cancer by children and adolescents and point out possible paths for future investigations in the area.
... In addition, many children were confused by the situation in which they were diagnosed with cancer, or had to start treatment immediately. They were shocked and perceived their disease had ruined their daily life and future (Brand et al., 2017;Clarke et al., 2005;De Clercq et al., 2017;de Vries et al., 2013;Jalmsell et al., 2016;Miller et al., 2013;Zwaanswijk et al., 2007). Children also experienced anxiety about their present life and future, including uncertainty about aspects such as a recurrence of their illness or death (Brand et al., 2017;Hokkanen et al., 2004;Ruhe et al., 2016). ...
... Setting Goals. Children set goals such as getting better from cancer, returning to a normal life before receiving a diagnosis of cancer (Brand et al., 2017), and leading a normal life as much as possible (de Vries et al., 2013). Although many studies did not discuss children's goals, children tended to set goals and perceived benefit in certain behaviors. ...
... For example, they felt that HCPs should talk about medical explanations facing them in discussions, provide ample time for talking with children, tell children about medical explanations at the same time as their parents, and (along with parents) should offer opportunities for children to express their opinions (Brand et al., 2017;Coyne et al., 2016;Gibson et al., 2010;Hokkanen et al., 2004;Jalmsell et al., 2016;Weaver et al., 2015). In addition, children trusted HCPs as medical specialist and believed that the choice suggested by their HCPs was the best opinion for them (Coyne et al., 2014;de Vries et al., 2013;Ingersgaard et al., 2017;Stegenga & Ward-Smith, 2008). Even if a decision was actually made by HCPs, children had confidence that the choice was the best opinion because they trusted their HCPs as a medical specialist (Coyne et al., 2014;Kelly et al., 2017). ...
Article
Background: Recently, awareness of children’s decision making has increased in an effort to enhance palliative care. However, the conceptual framework for decision making among children with cancer remains unclear. Aims: We clarified the decision-making process of children with cancer regarding their care, treatment, and support from family and health care professionals, and identified their needs and preferences. Design: We used metaethnography to conduct a metasynthesis of relevant studies. Data sources: We searched PubMed, EMBASE, PsycINFO, MEDLINE, and CINAHL. This report was prepared in accordance with the PRISMA statement. Results: Of the 7,237 retrieved studies, 27 met our inclusion criteria. Four themes emerged that reflected the decision-making process of children with cancer: (a) facing changes brought about by a health threat, (b) preparing for action, (c) asserting one’s choice, and (d) internal and external influences. Conclusion: Children with cancer initially undergo a decision-making process. Respecting children’s preferences, values, and emotions may help build trusting relationships and promote their decision-making capability. Future research should focus on children’s emotions, cognition, development, and interactions with parents and health care professionals.
... The overwhelming obstacle to their participation and agency is a lack of choices offered by HCP as a result of a While the roles of parent and HCP are well defined, the role of teenagers in the process is not. Maturity and disease experience, not age, is an important factor affecting participation roles for teenagers (De Vries 2012, Crawshaw 2009, De Vries 2009, Olechnowicz 2002, Talati 2010, Zwaanswijk 2007. The role of parent is defined as advocate and protector of the teenager, not as surrogate or proxy decision-maker (Holm 2003, Inglin 2011, Matsuoka 2012. ...
... Following the lead of the HCP was thus understood to be the most sensible choice a teenager could make. This is supported by previous research where both parents and teenagers recognise the restrictions the disease and the rigid protocols have on their ability to make any choices (Zwaanswijk et al, 2007, Stevens et al 2002 particularly at initial diagnosis (De Vries, 2012). This finding is echoed here at relapse as well as diagnosis. ...
... There is limited research that documents teenagers' involvement over a period of time or across a disease trajectory. However, research has highlighted that maturity and disease experience, not age, is an important factor affecting teenagers' role in decision-making (De Vries 2012, Crawshaw 2009, De Vries 2009, Olechnowicz 2002, Talati 2010, Zwaanswijk 2007, Bluebond-Langner et al 2005. Despite this, law and policy retain focus on the capacity and capabilities of teenagers as accorded with age. ...
Thesis
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Background: Much research undertaken on teenagers with life-limiting-conditions has focused on the retrospective views and experience of health care professionals (HCP) and parents (Miller 2012, Woodgate 2010, Stevens 2002, Stenmarker 2010, Matsuoka 2012). This has left a gap in the academic and clinical knowledge base regarding teenagers’ real-time perspectives of involvement and how, when or if they are involved in practice. Aims: To understand the complex process of decision-making that takes place among HCP, families and teenagers, for decisions regarding the teenager’s care and treatment. Methods: Ethnographic methods, participant-observation, informal conversation and open-ended semi-structured interviews are employed. The interactionist perspective provides the overarching theoretical framework. Data: Seven teenagers, 15 family members and 60 HCP were recruited. Data were collected from observations of consultations (147), HCP meetings (104) and informal discussions/interviews (253) with teenagers (86), parents (67), family members (6) and HCP (94). Observations were audio-recorded and transcribed verbatim. Findings: Grounded theory analysis of interviews/informal discussions identified several principles (acting on the care and treatment preferences of the teenager, doing the right thing as determined by clinical consensus, following the HCP lead, information exchange) regarding the involvement of teenagers. Observations highlighted how these principles were enacted in practice, the immutable factors (disease course, decision, treatment window, legal responsibilities) and communication practices (presentation of options, bargaining, information seeking, delegation) that determined when, how and why principles took precedence. Conclusions: Findings suggest teenagers with life-threatening-diagnoses want a different kind of involvement in decision-making than much policy advocates. Teenagers and parents express no desire for independent decision-making, nor do they encourage following the teenagers care and treatment preferences for decisions of consequence. Involvement is not static and consistent across the trajectory, nor is it dependent on chronological age. HCP and policymakers must reconsider the value of advocating one type of involvement focusing on providing ‘honest’ information, seeking teenagers’ preferences for care and treatment and following their lead.
... A shared aspect of the experience of participation in decision-making is the impact of protocol-driven clinical treatment, following the diagnosis of a life-threatening cancer when initiating a treatment plan is thought to be in the best interests of all concerned. 20 Parents and adolescents experience a lack of choice because decisions are guided by a medical protocol. 19,35,39,42 In describing their experiences at diagnosis, parents and adolescents report that the pace in consultations was too fast and that they lacked time to grasp what they were being told about protocols and treatment options, so that they could participate by asking questions. ...
... Eight studies 18,19,23,25,28,29,35,39,41 report variously that parents (eight studies) and adolescent (one study) initially experience a lack of control, a feeling of loss of power or a sense of being overwhelmed, under time pressure and unable to participate in decisions. 15,20,35,38 Kars et al. 25 identify parents striving for control as an issue continuing throughout the illness of their child. They found that 'Parents who lost their control surrendered their actorship' (p. ...
... Different dimensions of the parental role are presented including parent as advocate, expert, protector of the adolescent and protector of family values. 16,20,23,27,39,41 Holm et al. 23 found that advocacy was the overarching theme in parents' perception of their role in their child's healthcare. In the treatment phase, advocacy includes gathering and managing information, deciding about medical treatment, including limiting procedures and actively fostering good relations with medical staff. ...
Article
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Background Policy guidance and bioethical literature urge the involvement of adolescents in decisions about their healthcare. It is uncertain how roles and expectations of adolescents, parents and healthcare professionals influence decision-making and to what extent this is considered in guidance. Aims To identify recent empirical research on decision-making regarding care and treatment in adolescent cancer: (1) to synthesise evidence to define the role of adolescents, parents and healthcare professionals in the decision-making process and (2) to identify gaps in research. Design A narrative systematic review of qualitative, quantitative and mixed-methods research. We adopted a textual approach to synthesis, using a theoretical framework of interactionism to interpret findings. Data Sources The databases MEDLINE, PsycINFO, SCOPUS, EMBASE and CINHAL were searched from 2001 through May 2015 for publications on decision-making for adolescents (13–19 years) with cancer. Results Twenty-eight articles were identified. Adolescents and parents initially find it difficult to participate in decision-making due to a lack of options in the face of protocol-driven care. Parent and adolescent preferences for information and response to loss of control vary between individuals and over time. No studies indicate parental or adolescent preference for a high degree of independence in decision-making. Conclusion Striving to make parents and adolescents fully informed or urge them towards more independence than they prefer may add to distress and confusion. This may interfere with their ability to participate in their preferred way in decisions about care and treatment. Future research should include analysis of on-ground interactions among parents, adolescents and clinicians across the trajectory.
... The way choice is communicated and understood also influences decision making. For many decisions in paediatric oncology (Hinds et al., 2000, Coyne et al., 2014, Day et al., 2016, de Vries et al., 2013, Pentz et al., 2012, Overbay, 1996, NICU (Orfali and Gordon, 2004) and neurology (Smith et al., 2013, Heath et al., 2016, parents perceive there to be only one choice. In some situations there may only be one viable option, but in other cases families' perception of choice may be influenced by the way in which it is communicated. ...
... Such findings, however, may not be transferable to the life-limited population, where equipoise may be more common and choice more readily available. The provision of choice to the child regarding timing of treatments and non-critical decisions has been described as a way for parents to engage children in decision making and assist them to develop autonomy (de Vries et al., 2013, Coyne et al., 2014, Miller, 2009. However parents may use information framing in their communication with the child (Miller, 2009). ...
Article
Background The number of children with life-limiting conditions in England is increasing. Families and professionals caring for such children face difficult care and treatment decisions. However, little is known about the factors which influence such decision making and the processes through which decisions are made. Aim To explore the process of decision making and future planning for children with life-limiting conditions. Methods This study employed a longitudinal, qualitative case study approach, involving eleven cases. Cases were centred around a child and their family, and additional interview participants, including healthcare professionals and extended family members, were nominated by the family to participate in interviews. Data sources included 46 interviews, 72 observations and review of medical notes. Data were analysed using narrative analysis. Findings Key findings pertained to the importance of relationships and communication, the nature of decision making and strategies used within the process, and the role of best interests’ discussions during disagreements. Good relationships and communication were essential in decision making, as the process often involved multiple stakeholders. Poor inter-professional communication however was common and presented challenges for decision making. Analysis demonstrated that individuals recognise little practical or emotional difference between decision making and future planning, suggesting that they conceptualise both, simply as decision making. Within the process of decision making, numerous strategies were identified which aimed to achieve agreement between stakeholders. These were information framing, persuasion, appeals to evidence and justification. During protracted disagreements, occasionally reference to the child’s ‘best interests’ was made and occurred when professionals were concerned about harm to the child. Consequently the possible limits to parental decisional involvement through application to the courts, was highlighted, yet never actually implemented. Predominantly collaboration, which was indicative of shared decision making, was observed and reported. Conclusion This study revealed the complex and nuanced nature of decision making. This research has highlighted the necessity of good quality relationships between families and professionals, and also communication in the inter-professional relationship. For those involved in decision making for children with life-limiting conditions, an understanding of each individual’s holistic wishes and values, alongside their perception of decisional risks to the child are important considerations, particularly during sustained disagreements. This study suggests that despite the policy drive towards shared decision making and the widespread perception that parents are the ultimate decision makers for their children, these assumptions are bounded. It calls for a professional awareness of the moral work undertaken by families in decision making, in order to further promote collaboration and prevent sustained disagreement.
... Religious and spiritual care for children and adolescents with cancer and their families and caregivers has stood out as an important component of health care (Kamper et al., 2010;Mahayati et al., 2018;Nash et al., 2015). The scientific literature has described the different ways in which R/S permeates the experiences of childhood cancer and the care provided by health professionals (Darby et al., 2014;De Vries, 2013;Revuelta-Iniesta, 2014;Sposito et al., 2015). In this way, R/S can be observed as a phenomenon present in the contexts of pediatric oncology care, including nurses, physician, psychologists, chaplains, spiritual counselors, among other professionals who offer physical, mental and spiritual health care of this population (Cadge & Ecklund, 2009;Guedes et al., 2019;Proserpio, 2014;Proserpio, 2016). ...
Article
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This study consists of an integrative review of the scientific literature that aimed to know the religious and spiritual practices used by children and adolescents to cope with cancer. From searches in the databases/libraries CINAHL, PsycINFO, PubMed, SciELO and Lilacs (2009–2019), the final sample consisted of 20 articles. Prayers were the most widely used practices, followed by sacred books and objects, going to sacred places and the use of music. Improvements in well-being, physical and emotional health have been reported. It is concluded that such practices should be recognized as important resources in coping with cancer illness in this population.
... However, after the initial shock of the cancer diagnoses subsided, parents and children felt that what is in one's best interests are values outside of medical context like leading a good life, having a sense of control, and maintaining their identities -either through religion or other ways. 5 The paternalist view on decision-making in healthcare might argue that we trust parents to make decisions that are in their child's best interests in general -for example, which schools they attend, and what food they eat. 4 Therefore, Samantha's parents are probably the best equipped to know what is in her health interests as well. ...
Article
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It is crucial to obtain a competent individual’s informed consent in any medical process, including cancer treatments. However, when it comes to incompetent children, it seems to be favourable, but not necessary, to obtain their assent in medical practice.1 This paper considers Christine Harrison’s example of Samantha, an eleven-year-old girl that was treated for osteosarcoma in her left arm. Samantha had previously been treated by amputation and a course of chemotherapy. This cancer later metastasized to her lungs, decreasing her chances of remission with aggressive treatment to 20%. Although she wanted to refuse treatment, she was deemed incompetent to make decisions about her cancer care, and her parents adamantly wanted her to continue treatment.7 This paper considers physicians’ moral obligations in pediatric cancer cases such as Samantha’s. I will define assent, the principles of autonomy, beneficence, and competence as it pertains to children. I consider arguments of two opposing views–a child’s rights view that argues in favour of Samantha’s decision, and a paternalistic view that opposes her. After reviewing the bioethical literature on the risks and benefits of children’s decision making in health care, I argue that Samantha’s wishes to stop treatment ought to be respected.Throughout the paper, I will use the bioethical principles of respect for autonomy and beneficence to defend my position. Finally, I address potential objections my position may face and conclude.
... This gap is an indicator of the many problems researchers encounter when working with a vulnerable population and underscores the fact that children's voices remain rather marginal compared to those of parents and healthcare professionals ( Coyne, Hayes, Gallagher, Regan, 2006;Ruhe, Badarau, Elger, & Wangmo, 2014). Studies that have included the minor's point of view have focused mainly on attitudes towards communication and decision-making ( Coyne, Amory, Kiernan, & Gibson, 2014;Ruhe et al., 2016a), adequacy of cancer services ( Gibson, Aldiss, Horstman, Kumpunen, & Richardson, 2010) and the best interest standard ( de Vries et al., 2013). As far as we know, there are only a few studies that focus on children's lived experiences by analysing their cancer stories. ...
Article
Illness narratives have become very popular. The stories of children, however, are rarely ever studied. This paper aims to provide insight into how children, parents and physicians make sense of progressive childhood cancer. It also explores how this meaning-giving process interacts with cultural dominant stories on cancer and dying. The presented data come from 16 open-ended face-to-face interviews with palliative paediatric patients, their parents and physicians. The interviews were carried out in eight paediatric oncology centres in Switzerland. Data analysis followed Arthur Frank's dialogical narrative analysis. Quest narratives were relatively rare compared to both chaos and restitution stories. All participants welcomed chaos stories as a liminal haven between quest and restitution. The possibility that the child could die was either ignored or briefly contemplated, but then immediately pushed away. Except for one patient, children never directly addressed the topic of death. The way in which death was presented raises important questions about how the social discourse on dying is framed in terms of choice, autonomy and individuality. This discourse not only determines the way in which children and adults relate to the minor's death, it also constitutes an obstacle to children's participation in decision-making.
... The complex patterns of participation and mechanisms used to influence the extent or timing of information flow reflect the challenges of realizing patient participation in the pediatric oncology setting [15] and healthcare in general [1,17,31]. Study findings highlight that children's participation in decisions that could affect treatment outcome was restricted. ...
Article
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Conclusion: Adequate training of professionals to successfully translate the principle of patient participation into practice is required. What is known: •Adequate participation of pediatric patients in communication and decision-making is recommended by professional guidelines but little guidance exists as to how to translate it into practice. What is New: •The strategies used by physicians, parents, and patients to achieve participation are complex and serve to both enable and restrict children's and adolescents' involvement.
... In contrast, other commentators have called the BIC overly individualistic, arguing that 'a child's interests cannot be completely distinguished from those of his or her parents, but are always intertwined with those of the parents and siblings' [58]. Interests other than those solely of the child can, and should, come into play where decisions affecting the child may potentially impact the family unit. ...
Article
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Background Paediatric genomic research raises particularly challenging questions on whether and under what circumstances to return research results. In the paediatric context, decision-making is guided by the best interests of the child framework, as enshrined in the 1989 international Convention on the Rights of the Child. According to this Convention, rights and responsibilities are shared between children, parents, researchers, and the state. These "relational" obligations are further complicated in the context of genetic research. Discussion A comparative review of international, regional and national documents on the return of research results reveals that there is a dearth of normative documents in the paediatric context. The best interests of the child framework is increasingly complicated by a growing appreciation of pediatric autonomy and the development thereof; parental rights (particularly when parents are affected by the genomic information of their children); and the right not to know. Summary This comparative analysis reveals that policy-makers and legislators have responded to the above challenges in different ways. Nevertheless, in Europe as well as in Canada, there is an emerging trend towards making the return of certain results mandatory in the paediatric context, should this course of action prove to be in the best interests of the child.
Article
Determining the child’s best interests in a hospital setting will ideally involve the combined views of children, parents, and healthcare professionals. However, few studies have explored parents’ experiences of their child’s best interests when they engage with the healthcare system. Therefore, this study aimed to explore parents’ experiences of their child’s best interests during hospitalisation. A descriptive qualitative inductive design using face-to-face parent–child combined interviews, analysed by latent content analysis, was used. Sixteen parents recruited from a tertiary hospital in Western Australia were interviewed. Collaboration, development of trustworthy relationships, and effective communication were essential in shaping parents’ experiences of their child’s best interests during hospitalisation.
Chapter
Decision-making involvement is the relational process of supporting pediatric patient involvement in healthcare decision-making. This chapter aims to address the role of the pediatric patient in decision-making throughout the illness trajectory, and factors influencing individual patient and family preferences for decision-making involvement. The role of clinicians in facilitating pediatric patient involvement in decision-making is explored. Common barriers to decision-making involvement are addressed with recommendations for managing these barriers, including those such as caregiver interference and discordant beliefs. Methods of facilitating involvement across the continuum of development are discussed, and particular attention is given to determining the appropriate level of involvement based on individual patient and caregiver characteristics. This chapter includes suggestions for assessing competency to participate in individual care decisions and references helpful clinical tools for application in practice.
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Differences concerning the care of an extremely premature infant may stem from alternative points of view on how to determine the infant's best interest. These alternatives are illustrated by differences between recently published statements by the American Academy of Pediatrics (AAP) Committee on Fetus and Newborn (COFN) and the Committee on Bioethics (COB). The statements agree that a goal of neonatal medicine is to minimize both under- and overtreatment of the extremely premature infant, and advocate that the decision-making process ought to be based on the concept of the premature infant's best interest. However, the two AAP Committees appear to diverge in how they operationalize the concept of an infant's best interest. The COFN adopts a process consistent with an "expertise" model of best interest, while the COB process is consistent with a "negotiated" model. In the "expertise" model, medical re-evaluation of the infant's status, the best outcome data available, and the treating physician's best medical judgment determine best interest. This model limits parental and societal input, and can lead a physician to act paternalistically. In the "negotiated" model, best interest is determined by outcome data and physician assessment, as well as the moral value of an outcome. This model maximizes parental input, accepts physicians as moral agents, and respects social influence in a decision. It is important to clarify one's model of best interest to help understand the differences of opinion regarding decisions based on best interest. The negotiated model of best interest is a more ethically appropriate model to approach decision making.
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The questions patients are asked about their preferences with regard to life-sustaining treatment usually focus on specific interventions, but the outcomes of treatment and their likelihood affect patients' preferences. We administered a questionnaire about treatment preferences to 226 persons who were 60 years of age or older and who had a limited life expectancy due to cancer, congestive heart failure, or chronic obstructive pulmonary disease. The study participants were asked whether they would want to receive a given treatment, first when the outcome was known with certainty and then with different likelihoods of an adverse outcome. The outcome without treatment was specified as death from the underlying disease. The burden of treatment (i.e., the length of the hospital stay, extent of testing, and invasiveness of interventions), the outcome, and the likelihood of the outcome all influenced treatment preferences. For a low-burden treatment with the restoration of current health, 98.7 percent of participants said they would choose to receive the treatment (rather than not receive it and die), but 11.2 percent of these participants would not choose the treatment if it had a high burden. If the outcome was survival but with severe functional impairment or cognitive impairment, 74.4 percent and 88.8 percent of these participants, respectively, would not choose treatment. The number of participants who said they would choose treatment declined as the likelihood of an adverse outcome increased, with fewer participants choosing treatment when the possible outcome was functional or cognitive impairment than when it was death. Preferences did not differ according to the primary diagnosis. Advance care planning should take into account patients' attitudes toward the burden of treatment, the possible outcomes, and their likelihood. The likelihood of adverse functional and cognitive outcomes of treatment requires explicit consideration.
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Adolescents with cancer (AWC) have poorer treatment outcomes as well as higher incidence and mortality rates than do younger children, and they face additional challenges related to normal developmental issues of adolescence. Although research has shown that information on the cancer experience improves outcomes by decreasing uncertainty and increasing perceived support, little is known about the types of information AWC need and want. This study describes how AWC rate the importance of specific cancer-related information, analyzes gender and age group differences, and compares 2 different time-since-diagnosis groups of AWC. The sample consisted of adolescents with newly diagnosed cancer (n = 74) and those 1 to 3 years from diagnosis (n = 39). The Information Preferences of Adolescents (IPA) Scale was used to measure the adolescents' information needs. Both samples of AWC rated the need for information as high. There were no significant differences by age, but females had significantly higher total scores for both groups and for many item means in the newly diagnosed group. Qualitative analysis of the additional write-in items generated 4 themes: treatment/side effects, uncertainty, social issues, and personal/emotional issues.
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Minors are generally considered incompetent to provide legally binding decisions regarding their health care, and parents or guardians are empowered to make those decisions on their behalf. Parental authority is not absolute, however, and when a parent acts contrary to the best interests of a child, the state may intervene. The best interests standard is the threshold most frequently employed in challenging a parent's refusal to provide consent for a child's medical care. In this paper, I will argue that the best interest standard provides insufficient guidance for decision-making regarding children and does not reflect the actual standard used by medical providers and courts. Rather, I will suggest that the Harm Principle provides a more appropriate threshold for state intervention than the Best Interest standard. Finally, I will suggest a series of criteria that can be used in deciding whether the state should intervene in a parent's decision to refuse medical care on behalf of a child.
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The viewpoint of the terminally ill child at the time of an end-of-life decision has not been formally investigated. We identified the preferences of children and adolescents with advanced cancer about their end-of-life care and the factors that influenced their decisions. Pediatric patients 10 or more years of age were interviewed within 7 days of participating in one of the following three end-of-life decisions: enrollment onto a phase I trial (n = 7), adoption of a do not resuscitate order (n = 5), or initiation of terminal care (n = 8). The patient, a parent, and the primary pediatric oncologist were interviewed separately by using open-ended interview questions. Twenty patients, aged 10 to 20 years (mean, 17 years and 4 months), with a refractory solid tumor (n = 12), brain tumor (n = 4), or leukemia (n = 4) participated. Eighteen patients (90%) accurately recalled all of their treatment options and identified their own death as a consequence of their decision. The factors that were most frequently identified included the following: for patients, caring about others (n = 19 patients); for parents, the child's preferences (n = 18 parents); and for physicians, the patient's prognosis and comorbid conditions (n = 14 physicians). These children and adolescents with advanced cancer realized that they were involved in an end-of-life decision, understood the consequences of their decision, and were capable of participating in a complex decision process involving risks to themselves and others. The decision factors most frequently reported by patients were relationship based; this finding is contrary to existing developmental theories.
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Decision making in pediatric oncology can look different to the ethicist and the clinician. Popular ethical theories argue that clinicians should not make decisions for patients, but rather provide information so that patients can make their own decisions. However, this theory does not always reflect clinical reality. We present a new model of decision making that reconciles this apparent discrepancy. We first distinguish decisional priority from decisional authority. The person (parent, child, or clinician) who first identifies a preferred choice exercises decisional priority. In contrast, decisional authority is a nondelegable parental right and duty, in which a mature child may join. This distinction enables us to analyze decisional priority without diminishing parental authority. This model analyzes decisions according to two continuous underlying characteristics. One dominant characteristic is the likelihood of cure. Because cure, when possible, is the ultimate goal, the clinician is in a better position to assume decisional priority when a child probably can be cured. The second characteristic is whether there is more than one reasonable treatment option. The interaction of these two complex continual results in distinctive types of decisional situations. This model explains why clinicians sometimes justifiably assume decisional priority when there is one best medical choice. It also suggests that clinicians should particularly encourage parents (and children, when appropriate) to assume decisional priority when there are two or more clinically reasonable choices. In this circumstance, the family, with its deeper understanding of the child's nature and preferences, is better positioned to take the lead.
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INTRODUCTION. It might at first appear that pediatric ethics is sui generis, but it is a mistake to think so. Consider the well-known clinical ethical concept of pediatric assent. This ethical concept was pioneered in the 1980s by Sanford Leikin and endorsed in 1995 by the American Academy of Pediatrics. Pediatric assent recognizes that minor children cannot be accorded the legal right of informed consent but that older minor children, especially adolescents with chronic diseases, are capable of adult-like decision making about the clinical management of their diagnoses. The ethical content of the concept of pediatric assent is that, to the extent that their capacity for decision making and its exercise is adult-like, children should, with very few exceptions, be treated as having authority over themselves. Assent might appear to be unique to pediatrics, but it is not. It also bears on the authority that should be given to decision making and its exercise by older patients with the diminished decision-making capacity that results from progressive dementing disorders. In other words, the ethical concept of geriatric assent should guide decision making with geriatric patients who lack intact decision-making capacity. Rather than being understood to be sui generis, pediatric assent should be understood to be professional medical ethics applied to the specialty of pediatrics and its subspecialties. The core ethical concept of professional medical ethics is the ethical concept of the physician as fiduciary of the patient. In this chapter, I will show that pediatricians have the fiduciary ethical obligation to protect and promote the health-related interests of children.
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Controversies sometimes exist about how to make good treatment decisions for infants and young children. For example, consider the following: Case 1: Baby T was born at 32 weeks gestation and, as predicted in prenatal screening, had (non-mosaic) trisomy 13 and a semi-lobar holoprosencephaly as well as microencephaly. The only indication that she is conscious is that she reacts to painful stimuli by crying and withdrawing, and with an increased heart rate. Her teenage parents, however, are angry and distrustful. They do not believe the doctors, nurses, and members of the ethics committee who agree that when Baby T is conscious she is in considerable pain and that her life-prolonging treatments have no prospect of improving her condition but merely of prolonging her dying. Although carefully and compassionately counseled before and after Baby T's birth about her condition, her parents insist that they want “everything done” because they believe their daughter will be “perfectly normal.” Holoprosencephaly is a disorder that arises from the failure of the embryonic forebrain to divide correctly. Consequently, the lobes of the cerebral hemisphere do not form properly. A spectrum of severity exists depending on the extent to which the lobes form, ranging from most severe to nearly normal. Those with the most severe form die at birth, and all are mentally retarded. Baby T has a severe case, but not as severe as that of children in whom a single-lobe brain structure exists. Studies show that most adults would not want to prolong children's lives with maximal life-saving interventions if, like Baby T, they faced an existence of severe and intractable pain.
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Topical and compelling, this volume provides an excellent re-evaluation of the 'best interests' test in the healthcare arena; the ways in which it has developed, the inherent difficulties in its use and its interpretation in legal cases concerning the medical care of children. Comprehensively covering both the English and Scottish position within the context of the European Convention of human Rights and the UN Convention on the Rights of the Child, the author examines a wide range of healthcare situations, from the commonly occurring to the unusual, offering a detailed analysis of legislation, case law, cases and their implications. It includes discussions on: • the extent to which a child's body can be examined, operated on and affected by medicines, devices or procedures intended to bring about medical change • the appropriate scope of parental choice and authority and at what stage of their development children should be allowed to make their own decisions • the response to situations where the interests of children may be in conflict - the cases of conjoined twins or the donation of organs to siblings. This work is a key resource for postgraduates and researchers working and studying in the fields of law, healthcare and medicine.
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On the motion that “medical paternalism serves the patient best”, this essay reviews current arguments on medical paternalism vs. patient autonomy. Citing medico-ethical texts and journals and selected real-life applications like electroconvulsive therapy (ECT) and the advanced medical directive (AMD), the essay argues that medical paternalism cannot serve the patient best insofar as current debates limit themselves to “who” wields the decision-making power. Such debates side-step “what” the patient’s best interests are. The essay further argues through the case of Traditional Chinese Medicine (TCM), and acupuncture in particular, that the current dominant Western school of thought excludes other forms of “alternative” treatment through medical paternalism.
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Parental decision making is a critical component in the provision of palliative and end-of-life care, yet factors that parents perceive as influencing this process, when they are making decisions for their children, have not been well characterized. As part of a mixed-methods cohort study, we interviewed 73 parents of 50 pediatric patients who were referred to the hospital's pediatric palliative care service. The semistructured interviews focused on "decision making for your child"; the interviews were recorded and transcribed. A random sample (n = 13) was first coded and analyzed for core themes, and these themes were then cross-validated with a second random sample (n = 3) of interviews. Four dominant interrelated themes permeated parents' discussions about the decisions they were making for their children and the process of decision making. First, Orientation and Direction (including the subthemes of Goals and Hopes, Spirituality and Meaning, and Purposeful Effort) connotes the parents' effort to establish and clarify the broad context of decision making. Second, Defining What Is Good for the Child (including the subthemes of Quality of Life and Suffering, and Normalcy and Normalization) conveys how the parents posed questions and pondered what decisions would be in the child's best interests. Third, the entwined theme of Relationships, Communication, and Support reflects how parents reported the social and interactive nature of decision making. Fourth, the theme of Feelings and Personal Accountability focuses inward as parents report efforts to deal with their emotional responses and self-judgments. Parents report grappling with several influences upon their decision-making processes that extend well beyond the standard discussions of medical information exchanges and the evaluation of risks and benefits. Decision support for these parents should account for these diverse influences.
Chapter
To take decisive part in a child’s medical care, parents must know what questions to ask physicians — and themselves. I wish to examine three questions often asked and answered in pediatric decisions, namely, (1) “What would I do if it were my child?” asked by physicians of themselves; (2) “What would you do if it were your child?” asked of physicians by parents of ill children; (3) “What is in the child’s best interests?” asked by both physicians and parents.
Article
In de kindergeneeskunde is ‘informed consent’ een belangrijk begrip geworden. Informed consent gaat uit van twee visies op ziekte en behandeling: een professionele visie en een persoonlijke visie. Een arts stelt een indicatie en doet een behandelingsvoorstel (de professionele visie), maar het is altijd de patiënt zelf (of diens vertegenwoordiger) die de beslissing neemt of hij de behandeling wil (de persoonlijke visie). De praktijk leert echter dat arts en patiënt (of vertegenwoordiger) bijna nooit als gelijkwaardige partners overleggen over een behandeling noch dat de professionele en de persoonlijke visie strikt zijn te onderscheiden. Aan de hand van een casus uit de kinderoncologie wordt een nuancering gegeven van het begrip informed consent in de kindergeneeskunde. Daarbij wordt gewezen op een omslagproces dat bij chronisch zieke en langdurig ernstig zieke kinderen kan optreden en waarbij het persoonlijk perspectief voor ouders en kind toenemend belangrijk wordt. Het niet onderkennen van deze omslag kan leiden tot een conflict in de arts-ouderrelatie.
Article
Medical decision making is sometimes considered as a relatively simple process in which a decision may be made by the physician, by the patient, or by both patient and physician working together. There are three main models of decision making--paternalism, patient informed choice, and shared decision-making (SDM), having each one of these drawbacks and limitations. Historically, the most adopted one was the paternalism (strongly 'Doctor knows best'), where the professional made the decision based on what he/she considered to be as the patient's best interest, not necessarily contemplating patient's will and wishes. Currently, at the antipodes, the patient informed choice, where the patient makes his/her decision based on information received from the physician with no possible interference of professional's own preferences, seems to be the preferred relationship standard. SDM represents an intermediate approach between the two above-mentioned opposite models, being a medical process that involves actively the doctor and the patient who both bring their own facts and preferences to reach an agreement on the decision on if, when and how to treat a disease. This model, being characterized by elements pertaining to both the others, is gaining popularity in several medical and surgical scenarios whenever a competent patient is able to actively participate into the decisional process. On this basis can this model be implemented also in a Neonatology Intensive Care Unit where little patients are--by nature--incompetent, being the diagnostic/therapeutic choices taken by parents? We focused on this complex item considering four possible different scenarios and it seems to us that it could be possible to introduce such an approach, providing that parents' empowerment, a good physician's communication skill and consideration of all cultural, religious, economic, and ethic values of every single actor have been fairly taken into account.
Article
In ethics, the use of empirical data has become more and more popular, leading to a distinct form of applied ethics, namely empirical ethics. This ‘empirical turn’ is especially visible in bioethics. There are various ways of combining empirical research and ethical reflection. In this paper we discuss the use of empirical data in a special form of Reflective Equilibrium (RE), namely the Network Model with Third Person Moral Experiences. In this model, the empirical data consist of the moral experiences of people in a practice. Although inclusion of these moral experiences in this specific model of RE can be well defended, their use in the application of the model still raises important questions. What precisely are moral experiences? How to determine relevance of experiences, in other words: should there be a selection of the moral experiences that are eventually used in the RE? How much weight should the empirical data have in the RE? And the key question: can the use of RE by empirical ethicists really produce answers to practical moral questions? In this paper we start to answer the above questions by giving examples taken from our research project on understanding the norm of informed consent in the field of pediatric oncology. We especially emphasize that incorporation of empirical data in a network model can reduce the risk of self‐justification and bias and can increase the credibility of the RE reached.
Article
Since its foundation in 1991, the SIOP Working Committee on Psychosocial Issues in Paediatric Oncology1 has developed and published 12 sets of Guidelines for health-care professionals treating children with cancer and their families. Those elements considered essential in the process of cure and care of children with cancer are summarized in this document as a formal statement, developed at the 2007 SIOP annual meeting in Mumbai. Elaboration of the concepts with detailed strategies for practice can be found in the referenced guidelines [1-12] and in a companion publication [13]. This article is a summary of what practitioners considered critical elements in the optimal care of the child with cancer, with the goal of stimulating a broader application of these elements throughout the SIOP membership.
Article
To examine with families their views on the service they receive in a Paediatric Haematology/Oncology Day Care Unit. National policy emphasises the importance of involving children, young people and families in the planning of services they are receiving. To be responsive to real, as opposed to perceived needs, health care professionals are actively seeking ways to capture the voice of the families they care for through a process of consultation and action. Focus groups. A series of focus groups were undertaken with 16 families who were either on treatment or within six months of completion of treatment for acute lymphoblastic leukaemia. Tape- and note-based analysis was initially undertaken and the data sorted by means of an overview grid. Data were then analysed by the research team through comparison and agreement of final themes. The majority of families were satisfied with the care they received. Six themes are described that capture their combined thoughts on their overall experience; navigating the maze, communication, continuity of care, environment, waiting and organisation of care. Focus groups are an effective means of obtaining data from service users. Group discussion allowed for the sharing and development of ideas to be incorporated into developments within the service. Increasingly, children, young people and their families are being cared for within Paediatric Haematology/Oncology Day Care units, it is, therefore, vital that this aspect of care is designed, co-ordinated and delivered around the needs of the family. This can only be achieved by listening to the stories of those families who use our service to confirm what it is that works well and what areas of care may need to be enhanced.
Article
This investigation answered the question, What meaning do parents give to the decision to authorize or to withdraw or forgo authorization of life-sustaining treatment for a child? Using an exploratory design, the author interviewed 20 families who had faced this decision in the prior 6 to 12 months. From content analysis, parents' essential meaning was experienced through their sense of self, their being, and an ethic of responsibility. Parents' decisions reflected values regarding the eight key themes of life, pain and suffering, quality of life, not self, respect for person or best interest, family, faith and nature, and technology.
Article
To better define the treatment-related decisions considered most difficult by parents of pediatric patients with cancer and the factors that influenced their final decisions. Retrospective-descriptive design. Pediatric oncology institution in the mid-southern region on the United States. 39 parents representing 37 of 83 eligible families, 16 attending physicians, three nurses, and two chaplains. Parent participants responded by telephone to six open-ended interview questions and a 15-item questionnaire about factors that were important when making the decision to continue care. Healthcare professionals were interviewed face-to-face. Most difficult treatment-related decisions; factors influencing decision making. Parents reported 15 types of difficult decisions, the majority of which were made late in the course of treatment. Deciding between a phase I drug study or no further treatment (n = 14), maintaining or withdrawing life support (n = 11), and giving more chemotherapy or giving no further treatment (n = 8) were the most frequently reported difficult decisions. Parents rated "recommendations received from healthcare professionals" as the questionnaire factor most important in their decision making, and healthcare professionals rated "discussion with the family of the patient" as the most important factor. Parents of children or adolescents with cancer and their healthcare providers face difficult treatment-related decisions, many of which occur late in the course of treatment. Parents and healthcare professionals cite similar factors in their decision making but differ in their ratings of the factors' importance. For parents, the information and recommendations they receive from healthcare professionals figure most frequently and most importantly in their decision making. For healthcare professionals, the certainty that the patient will not get better and discussions with the patient's family figure most importantly in their decision making. Once parents conclude that their child can not get better, they are more likely to choose noncurative options such as choosing no further treatment or withdrawing life support. Nurses can help determine what information parents need in their decision making. Particular attention must be given to ways to communicate the likelihood of the their child's survival.
Article
This, the fifth official document of the SIOP Working Committee on Psychosocial Issues in Pediatric Oncology, develops another important topic: the Therapeutic Alliance between families and staff. This is addressed to the Pediatric Oncology Community as Guidelines that could be followed. Every parent, medical staff member, and psychosocial professional involved in the care of the child should be responsible for cooperating in the child's best interest. Everyone must work together toward the common goal of curing the cancer and minimizing its medical and psychosocial side-effects.
Article
The aim of this study was to learn about and to describe retrospective perceptions of parents of the circumstances of their child's cancer diagnosis and of the informed consent process. Professional moderators conducted three focus groups with 22 parents of children with cancer who were eligible for enrollment in a Children's Cancer Group clinical trial research protocol. Each focus group consisted of seven to nine parents and was audiotaped and transcribed. Parents' descriptions of the early phase of their child's illness yielded the following themes: dialogues regarding the diagnosis and treatment options occurred amidst tremendous stress; a sense of constraint and lack of control were common; parents experienced variable degrees of choice regarding their child's participation in a clinical trial; and parents provided suggestions about how to improve the informed consent process. Overall, parents did not verbalize distinctions between their understanding of their child's medical treatment, research participation, and other aspects of their child's cancer experience. Based on these results, the authors conclude with practical recommendations for health care professionals caring for children with cancer and call for future research about parents' understanding of treatment options, the nature of clinical trials, and experience with the diagnostic and early treatment phase of childhood cancer with larger samples of parents from multiple sites.
Article
To describe parental decision making about treatment options for children with cancer and determine the feasibility of a similar but larger international study. Exploratory. A pediatric catastrophic illness research hospital in the United States and children's hospitals in Australia and Hong Kong. A convenience sample of 43 parents (5 fathers and 38 mothers ages 23-59 years). Six open-ended interview questions posed to parents during private individual interviews. Content analysis techniques were used. Parental perceptions of (a) factors considered in the decision-making process, (b) behaviors of healthcare professionals that affected the process, and (c) satisfaction with the process. Feasibility of a larger study was estimated by considering ease of access to parents, number of refusals to participate, understanding of the interview questions, and level of interest at each setting. Access to parents was possible at all sites. Refusal to participate was reported only at the U.S. site. Certain factors (e.g., getting information from the healthcare team, trusting staff) were important to all parents considering end-of-life decisions. Site-specific factors included considering alternative therapies (at the Australian site) and strengthening faith (at the U.S. site). A larger international study of parental decision making is feasible. Sufficient similarities in parental decision making exist across these sites to justify future efforts to identify universal decision-making factors that, in conjunction with site-specific differences, could be helpful in developing guidelines for healthcare professionals who assist parents in making treatment-related decisions for a sick child.
Article
Modern medical care is influenced by two paradigms: 'evidence-based medicine' and 'patient-centered medicine'. In the last decade, both paradigms rapidly gained in popularity and are now both supposed to affect the process of clinical decision making during the daily practice of physicians. However, careful analysis shows that they focus on different aspects of medical care and have, in fact, little in common. Evidence-based medicine is a rather young concept that entered the scientific literature in the early 1990s. It has basically a positivistic, biomedical perspective. Its focus is on offering clinicians the best available evidence about the most adequate treatment for their patients, considering medicine merely as a cognitive-rational enterprise. In this approach the uniqueness of patients, their individual needs and preferences, and their emotional status are easily neglected as relevant factors in decision-making. Patient-centered medicine, although not a new phenomenon, has recently attracted renewed attention. It has basically a humanistic, biopsychosocial perspective, combining ethical values on 'the ideal physician', with psychotherapeutic theories on facilitating patients' disclosure of real worries, and negotiation theories on decision making. It puts a strong focus on patient participation in clinical decision making by taking into account the patients' perspective, and tuning medical care to the patients' needs and preferences. However, in this approach the ideological base is better developed than its evidence base. In modern medicine both paradigms are highly relevant, but yet seem to belong to different worlds. The challenge for the near future is to bring these separate worlds together. The aim of this paper is to give an impulse to this integration. Developments within both paradigms can benefit from interchanging ideas and principles from which eventually medical care will benefit. In this process a key role is foreseen for communication and communication research.
Article
Qualitative research methods could help us to improve our understanding of medicine. Rather than thinking of qualitative and quantitative strategies as incompatible, they should be seen as complementary. Although procedures for textual interpretation differ from those of statistical analysis, because of the different type of data used and questions to be answered, the underlying principles are much the same. In this article I propose relevance, validity, and reflexivity as overall standards for qualitative inquiry. I will discuss the specific challenges in relation to reflexivity, transferability, and shared assumptions of interpretation, which are met by medical researchers who do this type of research, and I will propose guidelines for qualitative inquiry.
Article
On the motion that "medical paternalism serves the patient best", this essay reviews current arguments on medical paternalism vs. patient autonomy. Citing medico-ethical texts and journals and selected real-life applications like electroconvulsive therapy (ECT) and the advanced medical directive (AMD), the essay argues that medical paternalism cannot serve the patient best insofar as current debates limit themselves to "who" wields the decision-making power. Such debates side-step "what" the patient's best interests are. The essay further argues through the case of Traditional Chinese Medicine (TCM), and acupuncture in particular, that the current dominant Western school of thought excludes other forms of "alternative" treatment through medical paternalism.
Article
Much research on the experiences of parents of children with cancer has been conducted within a discourse of psycho-pathology, or has tended to see parents mostly as a proxy source of information on the well-being of their children. Using empirical data from semi-structured interviews with 20 mothers of a child with cancer, in one area of the UK, we draw on sociological literatures on motherhood, childhood, caring, and chronic illness to suggest a more helpful and informative way of understanding their experiences. We suggest that mothers, although not ill themselves, experience many of the consequences of chronic illness. Biographical disruption begins for them when they first notice something wrong with their child, and intensifies with diagnosis, altering their sense of self and their social identity. The diagnosis brings with it a set of new responsibilities and role expectations, including an obligation of 'proximity'-being physically close to their child at all times to provide 'comfort' and 'keep-watch'. For mothers, caring evokes an intense emotional interdependence with their sick child, and involves a range of technical tasks and emotional work, including acting as 'brokers' of information for their child and managing their cooperation with treatment. Managing these obligations was achieved at high cost to the mothers themselves, and resulted in severe role strain by compromising their ability to function in other roles, including their role as the mother of their other children. Against the backdrop of a severe and life-threatening illness, everyday concerns about their child's diet or appropriate discipline take on a new significance and carry a heightened potential for generating conflict and distress for mothers. In presenting their accounts, mothers draw on prevailing cultural discourses about motherhood, childhood and cancer, and these clearly influence the context in which they care for their child, and shape their reflexive constructions of their experiences. Caring for a child with cancer had many adverse implications for the quality of life of the women we studied. Mothers of a child with cancer warrant study in their own right, and such study benefits from interpretive perspectives.
Article
Acute Stress Disorder (ASD) and subclinical symptoms of acute stress (SAS) may be a useful framework for understanding the psychological reactions of mothers and fathers of children newly diagnosed with a pediatric malignancy. Mothers (N = 129) and fathers (N = 72) of 138 children newly diagnosed with cancer completed questionnaires assessing acute distress, anxiety, and family functioning. Demographic data were also gathered. Inclusion criteria were: a confirmed diagnosis of a pediatric malignancy in a child under the age of 18 years without prior chronic or life threatening illness and fluency in English or Spanish. Descriptive statistics and multiple linear regressions were used to examine predictors of SAS. Fifty-one percent (N = 66) of mothers and 40% (N = 29) of fathers met DSM-IV diagnostic criteria for ASD. The majority of the sample reported experiencing at least one SAS. General anxiety, but not family functioning, was a strong predictor of SAS in both mothers and fathers even after controlling for demographic characteristics. Immediately following their child's diagnosis of cancer, most mothers and fathers experience SAS, with a subsample meeting criteria for ASD. More anxious parents are at heightened risk of more intense reactions. The findings support the need for evidence-based psychosocial support at diagnosis and throughout treatment for families who are at risk for acute distress reactions.
Article
To investigate parent participation in the hospitalized child's care from the perspectives of children, parents and nurses. Parent participation in the hospitalized child's care has been increasingly promoted in paediatric nursing for many years because it ameliorates the adverse aspects of hospitalization, avoids parental separation and contributes to quality care for sick children. Parent participation is assumed to be unproblematic but evidence exists that nurses often have difficulty caring for parents. Using grounded method, data were collected through in-depth interviews, questionnaires and observation with 12 nurses from four paediatric wards in two hospitals in England. The dominant process appeared to be the socialization of parents to their role on the ward through inclusionary and exclusionary tactics. Nurses controlled the nature of parents' participation and parents had to 'toe the line'. Although participation was presented as optional, parents were presented with no course other than acceptance. Parents were expected to stay with their child, behave properly and be involved in care. When parents did not adhere to these norms, they caused disruption to the order and routine of the ward. Compliance or non-compliance to the set of norms and rules was followed by reward or punishment. The nurses' dependence on parents' active participation in the organization and delivery of the work suggests that parent participation as it is practised is clearly about administrative efficiency, not consumer empowerment. Organizational and managerial issues must be examined to ensure that nurses are adequately prepared and resourced to support parents on the ward. Continuing assessment of parents' expectations though a structured assessment tool would help reduce misunderstandings and conflict. Nurses should assess the situational context before relying on subjective impressions and assumptions about parents' participation in care.
Article
I will argue that there are difficulties with the application of the four principles approach to incompetent children. The most important principle - respect for autonomy - is not directly applicable to incompetent children and the most appropriate modification of the principle for them is not clear. The principle of beneficence - that one should act in the child's interests - is complicated by difficulties in assessing what a child's interests are and to which standard of interests those choosing for children should be held. A further problem with the four principles approach is that parental authority does not follow clearly from the four principles.