C'est l'histoire d'un jeune homme de 17 ans, Parker Santé. Depuis le décès de son père il y a 5 ans, il n'a pas prononcé un mot. Pendant que ses camarades de classe postulent à l'université, lui sèche les cours du lycée et traîne dans les hôtels chics de San Francisco pour parfaire sa technique de pickpocket. Un jour, il rencontre Zelda Toth aux cheveux argentés. Il dérobe de l'argent dans son sac à main. Mais il est très surpris, elle ne le dénonce pas et lui dit qu'elle n'en aura bientôt plus l'utilité. Le livre décrit leur cheminement commun pour redonner goût à la vie l'un à l'autre.
Dans ce double album, deux des conteurs les plus reconnus d'Amérique latine, Alberto Laiseca et Alberto Chimal, se saisissent avec délicatesse du thème du sacrifice qu'une mère est prête à faire pour s'opposer à un événement tragique et irréversible : la mort d'un enfant. En illustrant et réunissant les deux histoires par un effet de miroir exceptionnel au coeur de l'ouvrage, l'artiste argentin Nicolás Arispe offre une lecture qui va au-delà des mots.
Ses illustrations en noir et blanc, symboliques et terribles, sont à la croisée d'Edward Gorey et de José Guadalupe Posada, du baroque et du paganisme, de la Première Guerre mondiale et des danses macabres médiévales. Dans La Mère et la Mort, l'Argentin Alberto Laiseca s'inspire d'un conte de Hans Andersen et nous raconte l'abnégation d'une mère prête à traverser les paysages les plus hostiles et à sacrifier sa chair pour retrouver son petit.
Dans Le Départ, le Mexicain Alberto Chimal dépeint le long et douloureux deuil d'une mère qui perd son enfant lors d'un tremblement de terre. Les deux récits, à mi-chemin entre la tragédie classique et la tradition orale, nous confrontent à nos peurs les plus profondes et à la question du deuil le plus douloureux qui soit, qui s'exorcise ici par la littérature et l'art.
Mon petit trésor, ce livre est pour toi. Ne l'oublions pas, tu as eu une soeur, et elle restera à jamais dans nos coeurs. Tu ne pourras pas grandir à ses côtés, mais ce livre nous permettra de nous la rappeler. Ceci est son cadeau : regarde autour de toi, une luciole t'émerveillera.
BACKGROUND: Palliative care principles are known to support the experiences of children and their families throughout the illness trajectory. However, there is little knowledge of the parental perceptions of care delivered and gaps experienced by families receiving end-of-life care. We report the most helpful aspects of care provided during the end of life and identify opportunities to improve care delivery during this critical time.
METHODS: This study consists of 2 one-hour focus group sessions with 6 participants each facilitated by a clinical psychologist to explore the experiences of bereaved parents of pediatric oncology patients at the end of their child's life. The data were transcribed and coded using constant comparative analysis and evaluated for inter-rater reliability using intraclass correlation coefficient.
RESULTS: Four common themes were identified through qualitative analysis: (1) valued communication qualities, (2) valued provider qualities, (3) unmet needs, and (4) parental experiences. The most prevalent of these themes was unmet needs (mentioned 51 times). Subthemes were identified and evaluated. Parents described struggling with communication from providers, loss of control in the hospital environment, and challenges associated with transition of care to hospice services.
CONCLUSION: Interventions that support the complex needs of a family during end-of-life care are needed, especially with regard to coordination of care.
Background: To design high-quality home-based hospice and palliative care (HBHPC) systems, it is imperative to understand the perspectives of parents whose children enroll in HBHPC programs.
Objective: the goal of this project was to identify and define parent/caregiver-prioritized domains of family-centered care in HBHPC by performing semistructured interviews of parents/caregivers ("parents") across Ohio whose children have received HBHPC. We hypothesized that the 10 provider-prioritized domains and their definitions, as identified in our previous research, would be modified and augmented by parents for application in the pediatric HBHPC setting.
Methods: This was a qualitative study utilizing semistructured interviews of bereaved parents of children who were enrolled in a pediatric HBHPC program at the three sites from 2012 to 2016 and parents of children who were currently enrolled in these programs for at least a year.
Results: Parent-prioritized thematic codes mapped to 9 of the 10 provider-prioritized domains of quality HBHPC; none mapped to the domain "Ethical and Legal Aspects of Care." Although most of the provider-prioritized domains are pertinent to parents, parents defined these domains differently, deepening our understanding and perspective of quality within each domain. An 11th domain, Compassionate Care, was created and defined based on emergent themes.
Conclusions: Parent/caregiver-prioritized domains of quality in pediatric HBHPC map closely to provider-prioritized domains, but parents define these domains differently. Parents also prioritize Compassionate Care as a new domain of quality in pediatric HBHPC. Measuring the quality of care provided in HBHPC programs through this broader perspective should enable the selection of measures which are truly patient- and family-centered.
Introduction: Custody concerns are a major source of psychosocial distress among single parents with life-limiting illness. Although children are increasingly living in diverse household structures, the current health care system is not designed to meet the unique needs of single parents or nontraditional families. Patients with unaddressed custody concerns can experience psychological suffering during treatment and at the end of life. Lack of clarity and resolution regarding guardianship may also result in additional hardship for their grieving children.
Case Description: We present the case of a 36-year-old-female with metastatic breast cancer, who was the single mother of four children. Despite significant concerns about her children's well-being, the patient did not complete legal guardianship processes. She experienced immense distress at the end of her life due to an unresolved custody plan.
Discussion: This case demonstrates the need for addressing custody and guardianship concerns with seriously ill patients early in the illness trajectory. While clinicians need not become experts on custody and guardianship themselves, understanding the impact of custody concerns-and the barriers to their resolution-can substantially improve end-of-life care for patients and better equip surviving family for the changes that lie ahead.
BACKGROUND: Despite evidence that referral to pediatric palliative care reduces suffering and improves quality of life for patients and families, many clinicians delay referral until the end of life. The purpose of this article is to provide a conceptual model for why clinical teams delay discussing palliative care with parents.
DISCUSSION: Building on a prior model of parent regoaling and relevant research literature, we argue for a conceptual model of the challenges and facilitators a clinical team might face in shifting from a restorative-focused treatment plan to a plan that includes palliative aspects, resulting in a subspecialty palliative care referral. Like patients and families, clinicians and clinical teams may recognize that a seriously ill patient would benefit from palliative care and shift from a restorative mindset to a palliative approach. We call this transition "clinician regoaling". Clinicians may experience inhibitors and facilitators to this transition at both the individual and team level which influence the clinicians' willingness to consult subspecialty palliative care. The 8 inhibitors to team level regoaling include: 1) team challenges due to hierarchy, 2) avoidance of criticizing colleagues, 3) structural communication challenges, 4) group norms in favor of restorative goals, 5) diffusion of responsibility, 6) inhibited expression of sorrow, 7) lack of social support, 8) reinforcement of labeling and conflict. The 6 facilitators of team regoaling include: 1) processes to build a shared mental model, 2) mutual trust to encourage dissent, 3) anticipating conflict and team problem solving, 4) processes for reevaluation of goals, 5) sharing serious news as a team, 6) team flexibility.
CONCLUSIONS: Recognizing potential team level inhibitors to transitioning to palliative care can help clinicians develop strategies for making the transition more effectively when appropriate.
BACKGROUND: Paediatric palliative care (PPC) is an active, total approach to the holistic care of the child and family. Close, long-lasting relationships between healthcare professionals and parents in paediatric palliative care enhance quality, provide emotional support and can influence how parents manage their role in the face of uncertainty.
AIM: To present a narrative literature review of long-term relationships between children's nurses and parents in PPC settings.
METHODS: Six databases (CINAHL, PsycINFO, ASSIA, Scopus, Medline and BNI) were searched, identifying 35 articles. A grey literature search produced seven additional relevant items.
FINDINGS: Four themes were identified: bonds; attachments and trust; sharing the journey; going the extra mile; and boundaries and integrity. All themes revealed an element of tension between closeness and professionalism.
CONCLUSION: Gaining a greater understanding of how closeness and professionalism are successfully managed by children's palliative care nurses could positively influence pre- and post-registration nurse education.
OBJECTIVE: This is the first known study which examines the evolutionary nature of spousal interaction patterns among Asian parents of children with chronic life-threatening illness, from the time of providing care to their child through bereavement. This study is informed by earlier findings that when a child is diagnosed with a chronic life-threatening illness, parents are faced with multiple stressors, leaving them with little time to invest in their spousal relationship.
PARTICIPANTS AND SETTING: A constructivist-phenomenological research paradigm was adopted and meaning-oriented interviews were conducted with 20 parental units (i.e., 6 couples, 12 lone mothers and 2 lone fathers) of Chinese, Malay and Indian ethnicities who lost their child to chronic life-threatening illness in Singapore.
RESULTS: Qualitative thematic analysis of the data revealed four themes, which describe the evolutionary nature of spousal interaction patterns among Asian parents of children with chronic life-threatening illness, from caregiving through bereavement. Findings reveal participants' tendency to concentrate on pragmatic, solution-focused communication during the period of caregiving (pragmatic interaction), avoid discussion about their emotional pain as a means of protecting their spouse (partner-oriented self-regulation), respect and acknowledge their spouse's personal coping strategies (empathic responding) and show greater appreciation and emotional expression within the spousal relationship after their child's death (affective appreciation).
CONCLUSION: Engaging in pragmatic discussions, deferring emotion-focused and potentially distressing conversations, and acknowledging their spouse's need for personal space are important coping strategies for Asian couples facing their child's chronic life-threatening illness and in the immediate aftermath of his/her death. Bereaved couples who have processed their grief individually feel ready to share their reflections with their spouse, deriving meaning and greater relational closeness through such disclosure. These findings are discussed from a cultural lens, with recommendations for healthcare professionals working with Asian parents of children with chronic life-threatening illness.
Background: Guidelines on pediatric palliative care recommend to provide care for children and adolescents with life-limiting conditions at home. Since 2007, in Germany, palliative home care can be provided by specialized outpatient palliative care teams. However, teams with specific expertise for children are not available all over the country. Families without this support need to use the hospital to get specialists' assistance.
Objective: To explore how parents of children and adolescents with life-limiting conditions think about the hospital as place of care.
Design: We conducted narrative interviews with parents and analyzed these by using a grounded theory approach.
Setting/Subjects: we interviewed 13 parents (4 fathers and 9 mothers) of 9 children with life-limiting conditions receiving or having received pediatric specialized outpatient palliative care (SOPPC) in Germany.
Results: Parents reported feelings of vulnerability, heteronomy, and disablement associated with hospital care and were afraid that their children's needs were not adequately addressed. These perceptions resulted from hospitals' standardized care structures and over- and undertreatment, a lack of continuity of care, hospital pathogens, a lack of a palliative mindset, insensitive hospital staff, the exclusion of parents from the treatment and parental care of their children, the hospital stay as a permanent state of emergency, and a waste of limited life time.
Conclusion: Pediatric hospital staff needs training in identifying and responding to palliative care needs. SOPPC structures should be expanded all over Germany to meet the needs of families of children with life-limiting conditions.
BACKGROUND: Death of one's infant is devastating to parents, negatively impacting couple relationships and their own health. The impact of a prenatally diagnosed life-limiting fetal condition (LLFC) on parents of minority status is unclear.
AIM: This comparative mixed methods case study examined the person characteristics, quality of perinatal palliative care (PPC) received and parent health outcomes.
METHODS: Bereaved couples, 11 mothers and 3 fathers of minority or mixed races (11 African American and Latino, 1 White Latino and 2 White parents) completed the survey; 7 were interviewed.
RESULTS: Parents rated their general health close to good, physical health close to normal but mental health lower than the population norm. Clinical caseness (abnormal levels) of anxiety were reported in 50% of parents whereas depression scores were normal. The experience of fetal diagnosis and infant death had a negative impact on the health of 40% of participants however, parents could not identify what specifically caused their health problems. Most were satisfied with their PPC but some shared that original providers were not supportive of pregnancy continuation. After the baby's death, 71% reported closer/stronger couple relationships. Two contrasting cases are presented. Once parents found PPC, their baby was treated as a person, they spent time with their baby after birth, and found ways to make meaning through continuing bonds.
CONCLUSION: Despite high overall satisfaction with PPC, bereaved parents were deeply impacted by their infant's death. Mixed methods case study design illuminated the complicated journeys of parents continuing their pregnancy with a LLFC.
INTRODUCTION: Many children are born with life-limiting illnesses. Medical decision-making for these children by caregivers is complex and causes significant psychosocial distress, which can be partially alleviated by effective communication with medical providers. In order for providers to support caregivers, this study explores how caregivers make decisions regarding the medical care of their terminally ill children.
METHODS: Semistructured interviews were conducted among caregivers of terminally ill children. Participation was voluntary and confidential. The institutional review board approved the protocol. Transcripts were read and coded by 2 authors using inductive, concurrent analysis to reach thematic saturation and generate common themes.
RESULTS: Nine interviews were completed, discussing the care of 10 children. Caregivers described decision-making as impacted by their relationships with medical providers of 2 distinct types-trusting and nontrusting. Trusting relationships were notable for a longitudinal relationship with medical staff who empowered caregivers and treated the patient primarily as a child. Nontrusting relationships were noted when the medical team objectified their child as a "patient" and appeared to withhold information. Also, nontrusting relationships occurred when caregivers felt frustration with needing to educate health-care providers about their child's illness.
CONCLUSION: Decision-making by caregivers of terminally ill children is complex, and supporting families in this process is a critical role of all medical providers. A trusting relationship with medical team members was identified as an effective tool for well-supported decision-making, which can potentially alleviate the suffering of the child and distress of the caregivers during this emotionally charged time.
There is a distinct lack of literature related to the spiritual care of parents whose children with cancer are at the end of life. This has led to a dearth in evidence about how nurses may intervene with spiritual care interventions to best support these vulnerable parents. The purpose of this scoping review was to examine the evidence regarding the value of spirituality/spiritual care in minimizing the vulnerability of parents whose children were diagnosed with cancer and who faced the end of life. The Arksey and O'Malley methodological framework guided the analysis of the reviewed quantitative and qualitative literature. Spirituality and spiritual care provided bereaved parents and parents of children with cancer with necessary support and enhanced coping to allow them to better deal with this devastating experience. Spirituality and spiritual care instilled hope, assisted in the search for meaning and purpose, and guided parents to develop continuing bonds with their child. Through skillful communication, pediatric oncology nurses may guide parents of children who face the end of life to strengthen relationships that offer support, plan activities that provide opportunities for hope and connection, and identify sources of meaning in their experiences.
Background: Parenting a child with a serious life-threatening illness (SLTI) may impact parents' mental health. The protective association of social support with anxiety over time following an acute medical event has not been empirically tested in a sample of parents of children with oncologic and nononcologic serious illnesses.
Objective: To test the potential association of perceived social support with anxiety in parents of children with SLTIs over time.
Design: Prospective cohort study.
Setting/Subjects: Two hundred parents of 158 children in the Decision Making in Serious Pediatric Illness study, conducted at the Children's Hospital of Philadelphia.
Measurements: Parental anxiety and perceived social support were assessed using the Hospital Anxiety and Depression Scale (HADS) and the Social Provisions Scale (SPS). We performed bivariate linear regressions to test cross-sectional and longitudinal associations between the SPS and anxiety scores at baseline, 12 months, and 24 months.
Results: The average SPS total and subscale scores decreased significantly from baseline to 12 months, and increased from 12 to 24 months. The average HADS-Anxiety scores decreased significantly from baseline to 12 months, and remained stable at 24 months. Cross-sectionally, total SPS scores were negatively associated with anxiety scores at each time point. Longitudinally, SPS scores were associated with anxiety scores, although this association weakened in adjusted modeling.
Conclusions: Over a two-year period, higher levels of perceived social support were associated with lower levels of anxiety in parents of seriously ill children. Clinicians and researchers should work to optimize social support for families to improve parental mental health outcomes.
Une mère témoigne de la décision qui a été prise de faire don des organes de sa fille Alice, diagnostiquée d'une tumeur au cerveau en très bas âge mais qui a pu vivre jusqu'à ce jour où elle a été victime d'un fatal accident d'équitation. C'est en tout six vies qui ont pu être sauvées grâce à ce choix.
Background: In 2018, >75,000 children were newly affected by the diagnosis of advanced cancer in a parent. Unfortunately, few programs exist to help parents and their children manage the impact of advanced disease together as a family. The Enhancing Connections-Palliative Care (EC-PC) parenting program was developed in response to this gap.
Objective: (1) Assess the feasibility of the EC-PC parenting program (recruitment, enrollment, and retention); (2) test the short-term impact of the program on changes in parent and child outcomes; and (3) explore the relationship between parents' physical and psychological symptoms with program outcomes.
Design: quasi-experimental two-group design employing both within- and between-subjects analyses to examine change over time and change relative to historical controls. Parents participated in five telephone-delivered and fully manualized behavioral intervention sessions at two-week intervals, delivered by trained nurses. Behavioral assessments were obtained at baseline and at three months on parents' depressed mood, anxiety, parenting skills, parenting self-efficacy, and symptom distress as well as children's behavioral-emotional adjustment (internalizing, externalizing, and anxiety/depression).
Subjects: Parents diagnosed with advanced or metastatic cancer and receiving noncurative treatment were eligible for the trial provided they had one or more children aged 5-17 living at home, were able to read, write, and speak English, and were not enrolled in a hospice program.
Results: Of those enrolled, 62% completed all intervention sessions and post-intervention assessments. Within-group analyses showed significant improvements in parents' self-efficacy in helping their children manage pressures from the parent's cancer; parents' skills to elicit children's cancer-related concerns; and parents' skills to help their children cope with the cancer. Between-group analyses revealed comparable improvements with historical controls on parents' anxiety, depressed mood, self-efficacy, parenting skills, and children's behavioral-emotional adjustment.
Conclusion: The EC-PC parenting program shows promise in significantly improving parents' skills and confidence in supporting their child about the cancer. Further testing of the program is warranted.
BACKGROUND: Most parents vividly recall the weeks, days, and moments preceding their child's death for years to come. Dissatisfaction with communication about their child's condition and lack of guidance can contribute to stress prior to a child's death. Based on findings from a study assessing the degree of preparation bereaved parents received and our collective clinical experience, the authors provide suggestions on end-of-life communication and guidance for parents.
METHODS: Caregivers of a child who died from cancer were invited to complete a 46-item survey through a closed social media (Facebook) group ("Parents who lost children to cancer"). In four months' time, 131 bereaved caregivers completed the survey. Results were analyzed using descriptive statistics, chi-square analyses, and a thematic content analysis framework. The mean age of the child at the time of death was 12.
RESULTS: Approximately 40% of the parents in this study felt unprepared for both the medical problems their child faced and how to respond to their child's emotional needs; fewer than 10% felt very prepared for either. Parents were more likely to feel unprepared when perceived suffering was high, highlighting the critical importance of communication and support from the healthcare team as an adjunct to optimal symptom control.
CONCLUSIONS: Through quantitative and open-ended responses, this study identified specific medical and emotional issues about which parents wanted greater preparation. Future research to evaluate guidance strategies to reduce parental suffering prior to the child's death is needed.
The aim of this article is to explore the concept of medical futility and the withdrawal of care for children in intensive care units. There have been several recent cases where medical staff have considered that there was no possibility of recovery for a child, yet their clinical judgments were challenged by the parents. The private anguish of these families became public, social media heightened emotions and this was followed by political and religious intrusion. Innovations in medical treatment and technological advances raise issues for all those involved in the care of children and young people especially when decisions need to be made about end of life care. Healthcare professionals have a moral and legal obligation to determine when treatment should cease in cases where it is determined to be futile. The aim should be to work collaboratively with parents but all decisions must be made in the best interests of the child. However, medical staff and parents may have differing opinions about care decisions. In part, this may be as a result of their unique relationships with the child and different understanding of the extent to which the child is in discomfort or can endure pain.
The opt-out system (or presumed consent) for end-of-life organ donation is being widely adopted in the United Kingdom. Since presumed consent for organ donation applies only to adults, commentators have recommended the implementation of routine parental request and integration of organ donation in the end-of-life care of children to increase the donor pool and the supply of transplantable organs. The empirical data for this recommendation originated from a survey of parents of deceased children with severe congenital and acquired brain injuries. The demographics of the surveyed parents were not representative of the diverse ethnic and religious affiliations of British society. Here, it is argued that there are unresolved medical, legal, cultural and religious challenges to the routine integration of end-of-life organ donation that can result in harmful consequences for children and parents. To address these challenges: (1) paediatric practice guidelines should be updated to incorporate new advances in the diagnosis and the treatment of severe brain injuries to eliminate potential clinical errors from premature treatment discontinuation and/or incorrect diagnosis of brain(stem) death and (2) a broad societal debate on the legal, cultural and religious consequences of routine integration of end-of-life organ donation in children.
Spiritual care is recognized as a relevant dimension of health care. In the context of pediatric palliative end-of-life care, spirituality entails more than adhering to a spiritual worldview or religion. Interviews with parents whose critically ill child died in the pediatric intensive care unit revealed features of a spirituality that is fragmentary and full of contradictions. This type of spirituality, which we refer to as fragile, speaks of parents' connectedness with the deceased child and the hope of some kind of reuniting after one's own death. Acknowledging that fragments of spirituality can be part of parents' experiences in their child's end-of-life stage can be a meaningful contribution to compassionate care.