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Family Perspectives on the Quality of Pediatric Palliative Care
Abstract
As a prelude to establishing a Pediatric Palliative Care Program, we solicited information from families about their experiences and their suggestions for improving the quality of end-of-life care. Participants were English- and Spanish-speaking family members of deceased pediatric patients who received care at Lucile Salter Packard Children's Hospital, Stanford University Medical Center, Palo Alto, Calif.
Sixty-eight family members of 44 deceased children were interviewed regarding treatment, transition to palliative care, and bereavement follow-up. Four clinical social workers and one clinical psychologist reviewed the participants' responses and identified frequently occurring themes.
Several areas of unsatisfactory interactions with staff were identified: confusing, inadequate, or uncaring communications regarding treatment or prognosis; preventable oversights in procedures or policies; failure to include or meet the needs of siblings and Spanish-speaking family members; and inconsistent bereavement follow-up. A discrepancy emerged between the high degree of pain described by the families and parents' perceptions that pain had been managed well. Community hospice programs are frequently poorly prepared to serve pediatric patients.
There is a need to improve pediatric palliative care. Recurring themes in the family interviews suggest useful issues to consider in the development of a palliative care program.
... In one study, Snaman et al. (2020) have suggested that the provision of psychosocial services, if successfully implemented, may positively influence QoL among pediatric patients receiving cancer and palliative care, and their families. 38 In these individuals, QoL is often compromised by factors such as pain, symptom burden, emotional distress, social isolation, financial hardship, and lack of support 39,40 ; provision of child life services could help improve their QoL. ...
... 41 Play provides a comforting escape for children and helps families connect with their children, thereby fostering positive memories and recreating a sense of normalcy. 40 Developmentally appropriate and culturally relevant patient education is essential in medical settings. CCLSs ensure that both children and their families are informed of the illness, treatment protocols, and even sensitive topics such as end-of-life care. ...
... 1,4 Such support networks offer a range of benefits, including emotional comfort, practical help, and spiritual guidance, all of which contribute to enhancing QoL. 39,40 One foundational role of CCLSs is championing the social and psychosocial needs of pediatric patients and their families, by ensuring that their emotional, psychosocial, and spiritual needs are assessed and supported, and that psychosocial care is provided to minimize disruption to their lives. 42 These measures ensure that children's preferences and choices are respected, and that the children are actively involved in decisions concerning their own care and well-being. ...
Saudi Arabia has made substantial advancements in its pediatric healthcare infrastructure. However, substantial gaps persist in addressing hospitalized children's emotional safety, and psychosocial and developmental needs. Internationally, the child life profession has evolved over decades to specifically address these needs, through interventions such as therapeutic play, age-appropriate patient education, and family support.
This article evaluates the imperative for integrating the child life profession into healthcare services in Saudi Arabia to transform the quality of pediatric healthcare. An analysis of the current landscape revealed gaps in pediatric psychosocial care. These gaps are listed as national priorities in the health transformation program aimed at improving healthcare quality and enhancing well-being. Integrating the child life profession can help achieve these objectives for children and families in Saudi Arabia.
This article highlights the multifaceted benefits of the child life profession in improving patient experiences, healthcare delivery efficiency, pediatric healthcare quality, and the overall well-being of children and families. Strategies for phased implementation, involving healthcare institutions, academic partners, relevant non-profit partners, and policymakers, are proposed.
... Schlechte Nachrichten sollten nach Möglichkeit von einer vertrauten Person überbracht werden, mit möglichst wenig Fachvokabular, viel Empathie und in einer Art und Weise, die auch Platz für Hoffnung lässt [8] [14]. Schlechte Nachrichten schaden Eltern weniger als unvollständige Informationen, die die Unsicherheit in dieser ohnehin schwierigen Situation verstärken [11]. ...
... Zusätzlich zum Verlust des Kindes kommt nach dem Versterben der Abbruch der Beziehungen zu den professionell Betreuenden, zu denen mitunter über lange Zeit gewachsene Beziehungen entstanden und die zu Wegbegleitern in einer schwierigen Zeit geworden sind, hinzu. Auch dieser Verlust kann für Eltern schmerzhaft sein [14]. [21]. ...
... Beschrieben wird der Wunsch, noch ein Stück weit in Kontakt zu bleiben und Hilfestellungen bei den nächsten Schritten wie beispielsweise der Organisation des Begräbnisses und ganz allgemein in der Trauerphase von jenen zu erhalten, die das Kind betreut und gut gekannt hatten [11]. Die Anteilnahme professionell Betreuender, seien es Trauerkarten, Anrufe oder die Teilnahme am Begräbnis, beschreiben Eltern als willkommen und tröstlich [4] [14] [20] [23]. ...
Was brauchen Eltern, die sich der Tatsache gegenübersehen, dass ihr Kind sterben wird? Welche Unterstützungsmöglichkeiten gibt es und welchen Beitrag können Pflegende dabei leisten?
... The first category of challenge that emerged relates to accessibility and the challenges that CGs face when navigating healthcare systems. Many studies reported that CGs had trouble accessing care due to language barriers [30][31][32][33][34][35][36][37][38][39][40]. Specifically, non-English speakers reported difficulties scheduling appointments [37,39] and lack of referrals by oncologists [34,41]. ...
... Respondents reported difficulty obtaining specific information in their language about cancer treatments [31,32,39,44,49,51], and clinical trials [37,44,45,52]. One study that focused on Hispanic cancer CGs noted that the Spanish translation for clinical trials, "estudio clinico", led many Spanish speakers to confuse the concept for a procedure or test that is done in a clinic setting [44]. ...
... Aside from differing values and beliefs related to shared decision-making, there are other ways that difference in cultural beliefs between a newcomer CG and HCPs can impact care [31,33,36,47,63,[73][74][75]. The literature in this review highlighted major discrepancies between CG and HCP beliefs regarding death and dying [33,36,47,48,74], and the disclosure of prognosis information to patients [36,47,[73][74][75]. ...
This scoping review explored what is known about the experiences of informal cancer caregivers (CGs) who are newcomers with limited language proficiency. A literature search was performed in seven databases and the search yielded 11,289 articles. After duplicate removal and title and abstract screening, 216 articles underwent full text review and 57 articles and were synthesized. Most studies (n = 41, 72%) were qualitative and were published in North America (n = 35, 61%). Most CG participants were female (69%) and only 19 studies explicitly identified the CG country of origin. Of those that did, 26% originated from Asia, with most migrating from East Asia. Significant challenges were experienced by newcomer CGs and chief among these were related to communication challenges with HCPs that were exacerbated by a lack of availability of medical interpreters and the complexity of oncology health information. Efforts are needed to better integrate newcomer CGs into cancer care.
... Caregivers and pediatric patients from various ethnic/racial groups indicate they value provider communication that is thorough, respectful, and honest and includes genuine expressions of compassion and kindness (Ghirotto et al., 2019;Lord, 2019;Melin-Johansson et al., 2014;van der Geest et al., 2014). For BIPOC families, language barriers and physician cultural sensitivity have been identified as important aspects of communication (Contro et al., 2002;Rosenberg et al., 2019;Saha et al., 2003). More specifically, families perceived clinicians as more culturally sensitive if they asked about a family's stories and understood the family's values (Rosenberg et al., 2019;Saha et al., 2003). ...
... More specifically, families perceived clinicians as more culturally sensitive if they asked about a family's stories and understood the family's values (Rosenberg et al., 2019;Saha et al., 2003). Other aspects of communication found important for specific groups include provider displays of affection among Hispanic caregivers who reported Spanish as their primary language (Contro et al., 2002), and supportive relationships developed through play among Ugandan patients (Amery et al., 2009). Overall, communication with caregivers and patients that is authentic, supportive, open, and responsive to individual family needs appears central to family experiences with PPC. ...
Objective: Each year, half a million families cope with pediatric life-threatening illness in the United States. While research on pediatric palliative care (PPC) is growing, literature focusing on caregivers and patients who identify as Black, indigenous, or people of color (BIPOC) is limited. Given disproportionate experiences of health care disparities among BIPOC families, further exploration of these families’ perspectives of PPC is imperative to improving health equity. The present topical review summarizes existing literature on BIPOC family experiences of PPC in order to inform current clinical practice and future research. Methods: Searches were conducted on databases including PubMed and PsycInfo, using the keywords pediatric palliative care, race, and ethnicity. Results: Based on available literature, regardless of ethnicity/race, families commonly identify clinician communication and management of patient pain as critical and desired components of PPC; however, research among BIPOC families suggests unmet needs across these domains as well as the need for improved physician cultural sensitivity. Conclusions: Existing PPC research among BIPOC families suggests unmet needs across domains, as well as the importance of attention to family culture and values. We conclude by providing recommendations for a culturally sensitive, family-centered approach to PPC; in addition to future mixed-methods research recommendations focusing on the experiences of BIPOC families.
Implications for Impact Statement
Literature has found that families commonly identify communication and pain management as key aspects of effective PPC, regardless of ethnic–racial background; however, BIPOC families additionally note the importance of cultural sensitivity with regards to their care. This review highlights the importance of culturally sensitive PPC and provides research and clinical recommendations for providing care from this inclusive approach.
... Effective clinician-patient communication is the basis of strong therapeutic relationships and has been shown to improve health outcomes, increase patient adherence to medical recommendations, and enhance patient satisfaction with care [1][2][3][4][5][6][7][8]. Conversely, poor communication may undermine the alliance between patients and families, interfere with delivering effective clinical care, and is often cited as the reason for patient dissatisfaction [4,5,8]. ...
Background
Pediatric cardiology fellows often deliver serious news to families. Effective clinician-patient communication is the basis of strong therapeutic relationships and improves health outcomes, increases patient adherence, and enhances patient satisfaction. Communication training improves physicians’ communication skills, ability to deliver serious news, and meet the informational and emotional needs of patients and family members. However, there is little data surrounding pediatric cardiology fellows competencies or training in communication skills.
Methods
Pediatric cardiology fellows participated in a 3-hour communication training session. The session used VitalTalk methodology and was facilitated by two VitalTalk facilitators. Fellows spent 1 h learning the skills of delivering serious news and responding to emotion and 2 h in role play with standardized actors followed by a brief group wrap-up activity. Participants took an anonymous, electronic pre- and post-survey and an 8-month follow-up survey via REDCap. Participants were asked about their preparedness and comfort performing certain communication skills and leading challenging conversations specific to pediatric cardiology. Response options used a combination of 0 (low comfort/preparedness) to 100 (high comfort/preparedness) point scales and multiple choice.
Results
9 fellows participated in the training and 100% completed all three surveys. Eight were first-year fellows and 1 was a third-year fellow. Finding the right words, balancing honesty with hope, and clinical and prognostic uncertainty were the top three factors that contributed to making conversations difficult. Following the course, there was a significant increase in fellow preparedness to communicate a new diagnosis of congenital heart disease, discuss poor prognoses, check understanding, and respond to emotion and an increase in fellow comfort responding to emotions. Four fellows reported using the skills from this training course in various clinical settings at 8-month follow up.
Conclusions
Communicating serious news effectively is a skill that can be learned in a sustainable way and is essential in the field of pediatric cardiology. Our study demonstrates that an interactive, VitalTalk course can improve preparedness and comfort to deliver serious news in a cohort of pediatric cardiology trainees. Future studies are needed to evaluate translation of skills to clinical practice and durability of these skills in larger cohorts.
... health outcomes, increase patient adherence to medical recommendations, and enhance patient satisfaction with care [1][2][3][4][5][6][7][8]. Conversely, poor communication may undermine the alliance between patients and families, interfere with delivering effective clinical care, and is often cited as the reason for patient dissatisfaction [4,5,8]. ...
Background
Pediatric cardiology fellows often deliver serious news to families. Effective clinician-patient communication is the basis of strong therapeutic relationships and improves health outcomes, increases patient adherence, and enhances patient satisfaction. Communication training improves physicians’ communication skills, ability to deliver serious news, and meet the informational and emotional needs of patients and family members. However, there is little data surrounding pediatric cardiology fellows competencies or training in communication skills.
Methods
Pediatric cardiology fellows participated in a 3-hour communication training session. The session used VitalTalk methodology and was facilitated by two VitalTalk facilitators. Fellows spent 1 hour learning the skills of delivering serious news and responding to emotion and 2 hours in role play with standardized actors followed by a brief group wrap-up activity. Participants took an anonymous, electronic pre- and post-survey as well as an 8-month follow-up survey via REDCap. Participants were asked about their preparedness and comfort performing certain communication skills and leading challenging conversations specific to pediatric cardiology. Response options utilized a combination of 0 (low comfort/preparedness) to 100 (high comfort/preparedness) point scales and multiple choice.
Results
9 fellows participated in the training and 100% completed all three surveys. Eight were first-year fellows and 1 was a third-year fellow. Finding the right words, balancing honesty with hope, and clinical and prognostic uncertainty were the top three factors that contributed to making conversations difficult. Following the course, there was a significant increase in fellow preparedness to communicate a new diagnosis of congenital heart disease, discuss poor prognoses, check understanding, and respond to emotion as well as an increase in fellow comfort responding to emotions. Four fellows reported using the skills from this training course in various clinical settings at 8-month follow up.
Conclusions
Communicating serious news effectively is a skill that can be learned in a sustainable way and is essential in the field of pediatric cardiology. Our study demonstrates that an interactive, VitalTalk course can improve preparedness and comfort to deliver serious news in a cohort of pediatric cardiology trainees. Future studies are needed to evaluate translation of skills to clinical practice and durability of these skills in larger cohorts.
... Communication during ECMO courses is often unclear, with one study reporting that nearly a quarter of parents felt they were not told about the possibility of death until their child failed to improve on ECMO and discontinuation was discussed [8]. Highquality communication is crucial to the support that clinical teams can provide families [8][9][10]. ...
Purpose
To develop physician recommendations for communicating with families during pediatric extracorporeal membrane oxygenation (ECMO) in Canada and the USA.
Methods
We used the Delphi methodology, which consists of 3 iterative rounds. During Round 1, we conducted semi-structured interviews with each panelist, who were pediatricians from the USA and Canada from the following pediatric specialties: intensive care, cardiac intensive care, and neonatology. We then used content analysis to code the interviews and develop potential recommendations. During Round 2, panelists evaluated each item via a Likert scale as a potential recommendation. Before Round 3, panelists were provided personalized feedback reports of the results of Round 2. During Round 3, panelists re-evaluated items that did not reach consensus during Round 2. Items that reached consensus in Rounds 2 and 3 were translated into the final framework.
Results
Consensus was defined as (1) a median rating ≥ 7 and (2) ≥ 70% of the panelists rating the recommendation ≥ 7. The final framework included 105 recommendations. The recommendations emphasized the importance of clarifying the goal of ECMO, its time-limited nature, and the possibility of its discontinuation resulting in patient death. The recommendations also provide guidance on how to share updates with the family and perform compassionate discontinuation.
Conclusion
A panel of experts from Canada and the USA developed recommendations for communicating with families during pediatric ECMO therapy. The recommendations offer guidance for communicating during the introduction of ECMO, providing updates throughout the ECMO course, and during the discontinuation of ECMO. There are also points of disagreement on best communication practices which should be further explored.
... Page 4/17 when prognosis is poor [3]. Parents' perspectives need to be heard and valued by the medical team and clinicians need to know that their words will have a lasting impact on bereaved families [4]. Unfortunately, many parents report inadequate communication at these most distressing times, reporting speci cally having received incomplete medical information and lack of emotional support or ample time to make decisions [5]. ...
Purpose
Effective, empathic communication is crucial for pediatric oncology clinicians when discussing palliative and end-of-life (PC/EOL) care with parents of children with cancer. Unfortunately, many parents report inadequate communication at these distressing times. This study evaluates the communication skills training (CST) clinicians received to deliver a PC/EOL communication intervention as part of a multi-site randomized-controlled trial (RCT).
Methods
Clinicians from eight sites formed dyads (one physician and one nurse [RN] or advanced practice provider [APP]) and were trained over 3 days (in-person or virtually). Training was adapted from VitalTalkTM and included didactic instruction, videos, visual aids, and dedicated time to practice with simulated patients. Study participants completed a confidential, post-training online evaluation survey. A self-reported quality assurance checklist was used to measure fidelity to the communication protocol when delivered to parents during the RCT.
Results
Thirty clinicians completed training; 26 completed post-training surveys including twelve (46.1%) physicians, 8 (30.8%) RNs and 6 (23.1%) APPs. Most were female (65.4%); white (80.8%), not Latinx (88.5%); 40-50 years old (53.9%); and in practice over 10 years (65.4%). Nine (34.6%) trained in-person; the rest trained virtually. Ninety-two percent reported the course was valuable or very valuable for developing their PC/EOL communication skills and 96% reported learning something new. Dyads trained virtually had similar fidelity to those trained in-person (95% and 90% respectively) when delivering the PC/EOL communication intervention to parents.
Conclusion
This PC/EOL CST was valuable for improving pediatric oncology clinicians’ communication skills, successfully implemented in-person and virtually, and translated effectively into practice.
... And the earlier the stage of training/shorter the working period, the lower the needs of physicians in this area. At the same time, studies indicate that only 44% of patients in Poland considered themselves to be sufficiently informed about their own health status [11], and insensitive and inadequate communication on end-of-life issues can cause the patient's family long-term emotional trauma [12]. The survey included physicians representing various specialties and non-specialists. ...
... 42 As an intended enabler to accessing services, outlined in the NICE statements, it would seem understanding of terminology could be viewed as a barrier to accessing good palliative care for children and young people. [43][44][45][46][47][48] Differences in experiences of bereavement support were evident, particularly depending of the age of the child and services which families were supported by. Parents of babies reported receiving extensive memory making bereavement support, which they valued. ...
Background
Worldwide, around 21 million children would benefit from palliative care and over 7 million babies and children die each year. Whilst provision of paediatric palliative care is advancing, there major gaps between what should be done, and what is being done, in clinical practice. In 2017, the National Institute for Health and Care Excellence (NICE) introduced a quality standard, to standardise and improve children’s palliative care in England. However, there is little evidence about what good experiences of palliative care for children are, and how they relate to the quality standard for end-of-life care.
Aim
This study explored how the NICE quality standard featured in parental experiences of palliative care for children to understand what ‘good’ palliative care is.
Design
Qualitative study, employing in-depth, telephone and video-call, semi-structured interviews. Data were analysed using thematic analysis, informed by Appreciative Inquiry.
Setting/participants
Participants were parents of children and young people (aged 0–17 years) in England, who were receiving palliative care, and parents whose child had died.
Results
Fourteen mothers and three fathers were interviewed. Seven were bereaved. Parents were recruited via four children’s hospices, one hospital, and via social media. Good palliative care is co-led and co-planned with trusted professionals; is integrated, responsive and flexible; encompasses the whole family; and enables parents to not only care for, but also to parent their child to end of life.
Conclusions
Findings have implications for informing evidence based practice and clinical guidelines, overall improving experiences of care.
... We have come to understand that the relationships developed with the parents of seriously ill children are often problematic, and professionals who are insensitive, unavailable, or impersonal in their approaches elicit parental dissatisfaction and increased distress. 3,[6][7][8][9][10][11][12][13] Parental satisfaction with care is directly related to the nature of the relationships held with the care providers. These relationships have a positive or negative impact upon how families experience the dying process and death of a child, and seem to affect their long-term adjustment to loss. ...
... The fear of the unknown was the most common source of worry. Pain is one of the common symptoms seen in cancer, [27] and internationally, children with cancer often felt inadequately addressed. [28][29][30] In our study, inadequately controlled pain and physical symptoms led to the experience of fear and worry. ...
Introduction
Adolescents with cancer experience several psychosocial concerns. Cancer among adolescents contributes to one-fifth of cancers in India. Most of the published empirical literature on adolescents’ views about their cancer experience is from high-income countries.
Objectives
The objectives of the study were to explore the experiences of adolescents with cancer in India.
Materials and Methods
Twenty-eight adolescents were purposively recruited and participated in prospectively conducted qualitative interviews conducted at the Tata Memorial Hospital, Mumbai, between 2013 and 2015. Interview data were transcribed and analysed using Braun and Clarke’s reflexive thematic analysis.
Results
Two themes and several subthemes were generated during the analysis. The transition to the new reality of illness was traumatic. It embodied fear about the unknown, disease and symptoms. The experience was isolating and disfigurement further led to peer separation. Inadequate information made the adolescents anxious and worried, and children and parents experienced moments of severe distress. The love and support received from parents, siblings and extended family facilitated positive coping. Peer support was reassuring and enabled them to have a normalising experience. Discovering their inner strength, acceptance of the situation and faith in God made them resilient and hopeful.
Conclusion
Adolescents with cancer experience significant emotional concerns, which are often unexplored and unaddressed. An adolescent-specific communication framework and psychosocial programme contextual to the Indian setting may be developed based on the study findings.
... A few studies of pediatric hospice care in the U.S. have found that care is often provided by adult hospice providers who lack sufficient pediatric training or experience [17,20]. While one study found that parents were generally satisfied with their child's symptom management provided by hospice [110], others noted significant problems with scheduling, staffing, and symptom management, resulting in unplanned hospital readmissions [111,112]. Telehealth hospice models may reduce the gap in pediatric-trained hospice providers and improve the end-of-life care of children at home [25]. ...
Care for U.S. children living with serious illness and their families at home is a complex and patchwork system. Improving home-based care for children and families requires a comprehensive, multilevel approach that accounts for and examines relationships across home environments, communities, and social contexts in which children and families live and receive care. We propose a multilevel conceptual framework, guided by Bronfenbrenner’s ecological model, that conceptualizes the complex system of home-based care into five levels. Levels 1 and 2 contain patient and family characteristics. Level 3 contains factors that influence family health, well-being, and experience with care in the home. Level 4 includes the community, including community groups, schools, and providers. Level 5 includes the broader regional system of care that impacts the care of children and families across communities. Finally, care coordination and care disparities transcend levels, impacting care at each level. A multilevel ecological framework of home-based care for children with serious illness and families can be used in future multilevel research to describe and test hypotheses about aspects of this system of care, as well as to inform interventions across levels to improve patient and family outcomes.
... That severely negative experiences were still haunting and bothering the parents at the time of the interview, three to four years after the loss of their child, left an unforgettable impression. A similar finding has been reported by Contro et al. [17] and confirmed by recent reviews [3,18] and a nationwide qualitative study in the Netherlands [19]. Once again, the importance of the provision of high-quality palliative and EOL care cannot be stressed enough. ...
Background
Paediatric Palliative Care (PPC) focuses on ensuring the best possible quality of life for the child and his/her family by extending beyond the physical domain into psychosocial and spiritual wellbeing. A deep understanding of what is important to parents is crucial in guiding the further evaluation and improvement of PPC and end-of-life (EOL) care services. Much can be learned from specific positive and negative experiences of bereaved parents with the EOL care of their child. This report builds upon a questionnaire survey as part of the national Paediatric End-of-LIfe CAre Needs in Switzerland (PELICAN) study.
Methods
One part of the PELICAN study was set up to assess and explore the parental perspectives on their child’s EOL care. Interview data were used to explain the extremely positive and negative results of a quantitative survey in an explanatory sequential mixed-methods approach. Data integration occurred at different points: during sampling of the interview participants, when designing the interview guide and during analysis. A narrative approach was applied to combine the qualitative results reported here with the already published quantitative survey results.
Results
Eighteen mothers (60%) and twelve fathers (40%) participated in 20 family interviews. All parents reported having both positive and negative experiences during their child’s illness and EOL, which was characterised by many ups and downs. The families transitioned through phases with a prospect of a cure for some children as well as setbacks and changing health status of the child which influenced prognosis, leading to the challenge of making extremely difficult decisions. Severely negative experiences still haunted and bothered the parents at the time when the interview took place.
Conclusions
A deep understanding of the perspectives and needs of parents going through the devastating event of losing a child is important and a prerequisite to providing compassionate care. This complex care needs to recognise and respond to the suffering not only of the child but of the parents and the whole family. Communication and shared decision-making remain pivotal, as do still improvable elements of care that should build on trustful relationships between families and healthcare professionals.
... O role-play, estratégia de simulação para o ensino das habilidades de comunicação, é uma técnica na qual os internos são convidados a atuar, em um contexto, interpretando papéis específicos (Rabelo & Garcia, 2015). Observa-se que a comunicação de uma má notícia, seja referente a um paciente idoso ou pediátrico, se realizada de forma insensível, quase rude, pode trazer perturbações e deixar marcas duradouras na família (Contro, Larson, Scofield, Sourkes, & Cohen, 2002 Mesmo que a atuação profissional traga mais desenvoltura para comunicar más notícias, muitos médicos não se sentem seguros para a tarefa. ...
Este livro inclui uma seleção de 64 artigos aceitos para apresentação e discussão no 9º Congresso Ibero-Americano em Investigação Qualitativa (CIAIQ2020), realizado entre os dias 15, 16 e 17 de julho de 2020. O CIAIQ apresenta três campos principais de aplicação (Educação, Saúde e Ciências Sociais) e sete temas principais: Fundamentação e Paradigmas da Pesquisa Qualitativa; Sistematização de abordagens com Estudos Qualitativos; Pesquisa Qualitativa e Métodos Mistos; Tipos de análise de dados; Processos Inovadores de Análise Qualitativa de Dados; Pesquisa Qualitativa em Contextos da Web; Análise Qualitativa com Suporte de Software Específico. Este livro revela-se uma excelente solução para investigadores, docentes e alunos, que procurem conhecimentos sobre a utilização da investigação qualitativa no contexto em Educação.
... Language barriers further challenge communication, and providers report limited training and guidance related to the use of interpreters (Kai et al., 2011). Parents who have limited or no English language skills often feel more isolated in the medical setting, with fewer opportunities for clinical updates or bedside conversation with nurses or physicians that can inform their understanding of both the child's current clinical status and emotional response (Contro et al., 2002). ...
Background: The treatment courses of youth with complex, chronic, and/or life-threatening illnesses are often punctuated with many consequential decision points, particularly when new information related to diagnosis or prognosis is revealed. These junctures may prompt disagreements between and within families and medical teams related to the appropriate amount and type of information to share with the child. When the beliefs held by clinicians and families about information disclosure diverge, pediatric psychologists may be consulted to facilitate collaborative conversations and promote shared decision-making. Objective: Decision-making regarding disclosure is often complex and nuanced. This article sought to synthesize literature on factors that influence disclosure in order to offer a unified model through which pediatric psychologists could guide these discussions. Method: The current article reviews relevant literature through the lens of Bronfenbrenner’s (1994) Ecological Systems Framework. A detailed case vignette is used to illustrate the application of this framework to disclosure decisions. Conclusion: The framework presented in this article is offered as a guide for liaising with families and treatment teams, promoting enhanced understanding of divergent viewpoints, and facilitating collaborative conversations about the amount and type of information to share (or not to share) with the child.
Implications for Impact Statement
Individuals hold varied beliefs regarding the disclosure of diagnosis and/or prognosis to pediatric patients, and these differences can contribute to increased stress and conflict among family members and providers. This article proposes a framework to guide psychologists in navigating requests for nondisclosure.
... 9,10 Ongoing communication with staff members and connection with other bereaved families are particularly salient mechanisms for reducing feelings of distress and isolation, while also promoting adaptive coping and meaning making. [10][11][12] Bereaved parents expressed that support groups are helpful resources because they provide opportunities to engage with others who understand the life-altering experience of losing a child 9,[13][14][15][16] and are able to share their stories without feeling "uncomfortable." 17 Moreover, parents described the importance of memorial events as touchpoints for contact with staff and other bereaved families and serve as affirmations of an institutional commitment to honor their child's legacy. ...
Although frequently overshadowed by adult mortality rates and bereavement care needs, the death of a child can significantly jeopardize the physical, psychosocial, and emotional health of surviving parents, caregivers, and family members. Unfortunately, researchers have only recently begun to explore the trajectory of pediatric bereavement care needs. As an ongoing public health concern, health care institutions and related organizations must partner with interdisciplinary care providers and bereaved families to design effective and sustainable bereavement supports in their communities. Therefore, the purpose of this article is to describe the development and accomplishments of an interdisciplinary bereavement committee at a children's hospital within an academic medical center. By relying on available empirical evidence and close collaboration with bereaved parent members, this effort has generated sizeable practice improvements and new service offerings within the organization, local community, and the individual patients and families the institution serves.
Waiting for a child transplant is a form of suffering for parents, yet little research has explored how parents experience waiting and how healthcare providers can impact their waiting experiences. The purpose of this article is to investigate how parents experienced the process of waiting for their child’s transplant with a specific focus on the impact of healthcare providers on parents’ experience of waiting. Six parents from four different families participated in interviews and observations. Our narrative analysis suggested that parents had no narrative roadmap to navigate waiting and the importance of healthcare providers’ tailoring the amount and type of medical information to a parents’ needs. We discuss how waiting required parents to be hypervigilant and provide continuity of care for their child, and how this “managerial role” could lead to a loss of trust with their healthcare providers. Parents’ accounts were replete with contradictions, and as an extension of this, waiting was full of contradictions. Findings contribute to conceptual, methodological, and practical work exploring how parents live in deep uncertainty about the future, and how healthcare providers can support parents in their child’s transplantation and other life-threatening illness contexts.
With the goal of improving quality of life through shared decision-making, pain and symptom management, and delineation of goals of care, pediatric palliative care (PPC) is both warranted and beneficial in a variety of clinical settings. However, there are nuances in the operations of the PPC team based on the patient populations with whom they work. As prenatal diagnoses of life-limiting fetal conditions advance, PPC can be utilized in a perinatal setting to prepare a birth plan addressing the goals of care for the neonate and their family. PPC is recognized as necessary among children with congenital heart disease due to risks of early mortality, uncertain disease trajectories, and long-term comorbidities often requiring medical and surgical management. PPC needs in pediatric oncology are unique as medical advancements may allow children to live with—rather than be cured of—cancer. In pediatric neurology, PPC is beneficial in addressing uncertain prognoses, limited life expectancies, and high symptom burden. Children and youth with special health care needs (CYSHCN) are being increasingly recognized as a subpopulation with unique care considerations. Many children in this group benefit greatly from having PPC involved in their care team. Another group recognized as unique in medicine, and in palliative care specifically, is the adolescent and young adult (AYA) population. When these patients face serious illness, their experience is distinct from other pediatric patients and from adult patients. PPC teams take the particular needs of each of these populations and the individuals within them seriously as they work for patient- and family-centered care.
Adolescence is a challenging time at baseline, and a sibling receiving end-of-life care can alter an adolescent's life irrevocably. It is imperative for the medical team to understand the unique needs and perspectives of such an adolescent sibling. This in turn facilitates the anticipation of an adolescent's grief response, and allows for parents to be appropriately guided. However, more can be done to evaluate the needs of adolescent siblings and improve their support. This can be through establishing a validated needs-based questionnaire, empowering families and the multidisciplinary team to engage siblings, and diverting resources toward culturally sensitive support groups for siblings with critical illness. A framework to involve key players in the adolescent's circle is presented.
Latinx children with cancer in the United States (US) are more than 50% more likely to die of their cancer compared to non-Latinx White children. Despite this disproportionate likelihood, little is known about the grief experiences of Latinx populations in the US related to the loss of a child including the sociocultural context of this loss experience. We used a meta-ethnographic approach to analyze and synthesize qualitative data across 9 studies related to bereavement and grief in US-based Latinx families following the death of a child. Four key concepts emerged that shape the environment of loss, influence the experience of grief, and affect the related resiliency capacities of Latinx families in the US: (1) immigration context, (2) Latinx cultural influences, (3) social support/familismo, and (4) healthcare inequities. These findings can inform future research and the development of culturally responsive interventions.
PURPOSE
Online patient portals represent widely available communication tools in pediatric oncology. Previous studies have not evaluated clinicians' perspectives on portal use, including issues related to access to adolescents' portals.
METHODS
We performed semistructured interviews with physicians and advanced practice providers (APPs) who care for children or adolescents with cancer. We performed thematic analysis of benefits, problems, and accommodations related to portal use in oncology.
RESULTS
We interviewed 29 physicians and 24 APPs representing 26 institutions. Participants described five themes of benefits provided by portals: (1) empowering adolescents, (2) improving efficiency and accuracy of communication, (3) promoting open and adaptive communication, (4) supporting parents in managing care, and (5) bolstering clinical relationships. Participants described eight themes of problems caused by portal access: (1) creating emotional distress and confusion, (2) increasing workload and changing workflows, (3) threatening adolescent confidentiality, (4) adolescents lacking interest to engage, (5) diminishing clinical relationship, (6) misusing portal messages, (7) diminishing quality of sensitive documentation, and (8) parents losing access to adolescents' records. Participants described three themes related to accommodations they made as a result of portal access: (1) modifying note writing, (2) providing anticipatory guidance about viewing results, and (3) adapting workflows. Some portal functions created either benefits or problems depending on the clinical context.
CONCLUSION
Oncologists identified benefits and problems created by portal use, which were sometimes in tension, depending on the clinical context. To make portals useful, we must take steps to mitigate risks while preserving functionality for parents and adolescent patients.
Context:
Hospital-based pediatric palliative care (PPC) may help optimize referrals to community-based hospice and home-based palliative care (HBPC) for children with serious illness, yet little is known about their referral practices.
Objectives:
To describe community-based program referrals from a PPC team, identifying factors associated with referral type, and potential misalignment between patient needs and referral received.
Methods:
Chart abstraction of patients seen in 2017 by the PPC team of a large, urban children's hospital, followed for at least 6 months or until death, including clinical and demographic characteristics, and referrals to hospice and HBPC.
Results:
Of the 302 study-eligible patients, 25% died during the hospitalization of the first 2017 visit. Of the remaining 228 patients, 42 (18.4%) were referred to HBPC and 58 (25.4%) to hospice. Excluding patients referred to hospice care, only one-third with demographic eligibility were referred to HBPC; those seen in the ICU were least likely to be referred. Over half of the 58 patients referred to hospice died within the study period (n = 34, 58.6%); descendants were more likely to have cancer (P = 0.002) and less likely to have a neurologic (P = 0.021) diagnosis.
Conclusion:
Despite demographic eligibility, a minority of patients seen by a hospital-based PPC team received referrals for hospice or HBPC. Children discharged from an ICU and those with neurologic conditions may be at higher risk of missing referrals best aligned with their needs. Future research should identify and address causes of referral misalignment. Advocacy for programs adaptable to patients' changing needs may also be needed.
Pediatric palliative care (PPC) programs vary widely in structure, staffing, funding, and patient census, resulting in inconsistency in service provision. Improving the quality of palliative care for children living with serious illness and their families requires measuring care quality, ensuring that quality measurement is embedded into day-to-day clinical practice, and aligning quality measurement with healthcare policy priorities. Yet, numerous challenges exist in measuring PPC quality. This paper provides an overview of PPC quality measurement, including challenges, current initiatives, and future opportunities. While important strides toward addressing quality measurement challenges in PPC have been made, including ongoing quality measurement initiatives like the Cambia Metrics Project, the PPC What Matters Most study, and collaborative learning networks, more work remains. Providing high-quality PPC to all children and families will require a multi-pronged approach. In this paper, we suggest several strategies for advancing high-quality PPC, which includes 1) considering how and by whom success is defined; 2) evaluating, adapting, and developing PPC measures, including those that address care disparities within PPC for historically marginalized and excluded communities; 3) improving the infrastructure with which to routinely and prospectively measure, monitor, and report clinical and administrative quality measures; 4) increasing endorsement of PPC quality measures by prominent quality organizations to facilitate accountability and possible reimbursement; and 5) integrating PPC-specific quality measures into the administrative, funding, and policy landscape of pediatric healthcare.
This chapter explores the emerging field of child life specialists' (CLS) role in hospital and community-based palliative and hospice care services. Relying heavily on their knowledge of child development, play, family systems, and grief to support patients and families through the trajectory of one's illness, child life specialists can adapt their skills to provide support in this environment. A CLS cannot change what is happening medically but can promote positive experiences for children involved to mitigate the potential trauma, ideally resulting in more positive psychosocial outcomes. Goals of care for CLSs in these settings can include developmentally appropriate education about a diagnosis, treatment plan, physical changes, prognosis, or end of life; various forms of play and therapeutic interventions for processing and the expression of feelings or emotions; memory-making; legacy building; anticipatory grief support; promoting opportunities to say goodbye; funeral or memorial preparation and advocacy for involvement; and bereavement support.
This textbook on palliative social work is a companion volume to the Oxford Textbook of Palliative Medicine and the Oxford Textbook of Palliative Nursing. To that end, this chapter will accomplish the following:
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Pediatric palliative social workers can improve the care that children and their families receive by providing information and emotional support throughout the decision-making process.
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Ethical issues are inherent in the care of children facing potentially life-limiting illness. To prevent an ethical issue from becoming an emotionally laden ethical dilemma, social workers engage in rational discernment and effective communication.
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When working with children and their families, sensitivity to cultural and language differences is key to effective communication and decision making.
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Because children are in the developmental process with varying abilities to participate in the decisions about their own care, pediatric palliative social workers need competencies in child development, bioethics, and conflict resolution.
PURPOSE
Adolescents and young adults (AYAs) with cancer have high rates of hospital deaths. It is not clear if this reflects their preferences or barriers to dying at home.
METHODS
Between December 2018 and January 2021, we conducted in-depth interviews with AYAs (age 12-39 years) with stage IV or recurrent cancer, family caregivers including bereaved caregivers, and clinicians of AYAs with cancer. Patients were asked about their priorities for care including location of death, caregivers were asked what was most important in the care of their AYA family member, and clinicians were asked to reflect on priorities identified through caring for AYAs. Directed content analysis was applied to interview data, and themes regarding location of death were developed.
RESULTS
Eighty individuals (23 AYAs, 28 caregivers, and 29 clinicians) participated in interviews. Most AYAs and caregivers preferred a home death. However, some AYAs and caregivers opted for a hospital death to alleviate caregiver burden or protect siblings from the perceived trauma of witnessing a home death. Lack of adequate services to manage intractable symptoms at home and insufficient caregiver support led some AYAs/caregivers to opt for hospital death despite a preference for home death. Participants acknowledged the value of hospice while also pointing out its limitations in attaining a home death.
CONCLUSION
Although most AYAs prefer to die at home, this preference is not always achieved. Robust home-based services for effective symptom management and caregiver support are needed to close the gap between preferred and actual location of death for AYAs.
Background
Paediatric palliative care provides supportive care to children with life-threatening or life-limiting illnesses throughout the disease trajectory. Up to 42% of children receiving palliative care in Canada will die within a freestanding paediatric hospice or designated end-of-life care bed. Few studies have assessed families’ experiences of this care within freestanding paediatric hospices.
Objectives
To find and describe literature relating to family experiences in paediatric hospice palliative care throughout the end-of-life care journey including grief and bereavement.
Criteria
Inclusion criteria: Children antepartum to 18 years or older if on paediatric palliative care service. Research conducted in freestanding paediatric hospices that focused on families’ experiences and perceptions of end-of-life and grief and bereavement care. Full-text articles available in English.
Exclusion criteria: Adult palliative and end-of-life care, respite care, palliative care provided in acute or community settings, professional perspectives, unexpected or sudden child death, pregnancy after loss.
Sources of evidence
Academic Search Complete, CINAHL, Cochrane Database of Systematic Reviews, Embase, PsycINFO, PubMed and Web of Science databases were searched from database inception until the present. Grey literature was also searched for relevant results.
Charting methods
The scoping review was guided by recommendations from Arksey and O’Malley and Levac et al .
Results
A total of 4250 papers were retrieved, of which 10 met the scoping review criteria. The majority of studies were conducted in the UK. Three major themes emerged: more supportive care for families including grief and bereavement support, the hospice experience itself and future research areas.
Conclusions
There is little literature that focuses specifically on the needs of families within freestanding paediatric hospices. Further examination of the themes identified above provides an opportunity for future research.
BACKGROUND AND OBJECTIVES
Physicians and parents of critically ill neonates and children receiving intensive care have to make decisions on the child’s behalf. Throughout the child’s illness and treatment trajectory, adequately discussing uncertainties with parents is pivotal because this enhances the quality of the decision-making process and may positively affect the child’s and parents’ well-being. We investigated how physicians discuss uncertainty with parents and how this discussion evolves over time during the trajectory.
METHODS
We asked physicians working in the NICU and PICU of 3 university medical centers to audio record their conversations with parents of critically ill children from the moment doubts arose whether treatment was in the child’s best interests. We qualitatively coded and analyzed the anonymized transcripts, thereby using the software tool MAXQDA 2020.
RESULTS
Physicians were found to adapt the way they discussed uncertainty with parents to the specific phase of the child’s illness and treatment trajectory. When treatment options were still available, physicians primarily focused on uncertainty related to diagnostic procedures, treatment options, and associated risks and effects. Particularly when the child’s death was imminent, physicians had less “scientific” guidance to offer. They eliminated most uncertainty and primarily addressed practical uncertainties regarding the child’s dying process to offer parents guidance.
CONCLUSIONS
Our insights may increase physicians’ awareness and enhance their skills in discussing uncertainties with parents tailored to the phase of the child’s illness and treatment trajectory and to parental needs in each specific phase.
Background
In pediatric palliative care, irritability of unknown origin (IUO) in children with severe neurological impairment is a peculiarly complex and challenging symptom, yet its etiology remains poorly understood.
Measures
A structured IUO diagnostic and therapeutic approach developed in a specialized inpatient pediatric palliative care facility for identifying IUO's potential contributing factors (PCFs).
Interventions
Prospective observational study with N=22 children showing IUO at admission to the inpatient pediatric palliative care facility. Analysis of patient records and participation in ward routine to identify and treat PCFs. Treatment outcome was assessed using a standardized protocol for tracking IUO at 24-hour intervals.
Outcomes
Altogether, 136 PCFs were identified (average 6.18 per child) with pain and psycho-social problems being the most common. 222 diagnostic measures were initiated of which 159 (71.6%) helped identify a PCF. The majority of PCFs were identified by basic diagnostics (93.7%). Inpatient length of stay and duration of IUO phases correlated significantly. Between baseline (days 3-5; timing at which inpatients experientially show regular behavior) and discharge, patients showed a significant reduction in average 24-hours IUO duration by 1 hour and 26 minutes (Wilcoxon test: Z= -3.29, p< .01).
Conclusions
Results lead to a more thorough understanding of PCFs to IUO. Following a systematic approach such as the one presented, PCFs can be detected even by simple diagnostics. In addition to biological aspects, diagnostics and therapy should address psycho-social aspects of IUO.
The purpose of the current prospective cohort study was to determine if acculturation, measured by primary language spoken, impacts the pain response of children being treated for cancer during an experimental pain task. Sixty-seven Spanish-speaking and English-speaking children ages 6 to 18 years being treated for cancer provided ratings of pain and upset severity during the completion of the cold pressor task (CPT). One week following the CPT, participants provided their recollection of average pain and upset during the CPT. Repeated measures analysis of variance revealed Spanish-speaking children reported significantly higher pain (F1,64=5.58, P=0.02) and upset (F1,64=7.69, P=0.007) ratings during the CPT compared with English-speaking children. Also, Spanish-speaking children were over 4 times as likely to remove their hands from the water before the CPT 4-minute uninformed ceiling compared with English-speaking children (P=0.002). These findings suggest that cultural and contextual factors, including the level of acculturation, are important considerations in the assessment and management of pain in children with cancer. Future research should continue to examine the mechanisms underlying the association between acculturation and the symptom experience for children receiving treatment for cancer.
Purpose of this Review
The purpose of this review is to describe the evolution of palliative care in paediatric oncology, the needs of children and their families in a paediatric oncology setting, palliative care referral practices in paediatric oncology, outcomes of palliative care referral in paediatric oncology and models of palliative care in paediatric oncology.
Recent Findings
Cancer constitutes 5.2% of the palliative care needs in children. Approximately, 90% of children with cancer lives in low and middle-income countries, constituting 84% of the global burden of childhood cancers. Children in low and middle-income countries have low cure rates and high death rates making palliative care relevant in a paediatric oncology setting. Children with cancer experience pain and physical symptoms, low mood, anxiety, and fear. They feel less resilient, experience low self-worth, and have challenges coping with the illness. The families lead very stressful lives, navigating the hospital environment, and dealing with uncertainties of the future. Palliative care referral in children with cancer improves physical symptoms, emotional support, and quality of life. It enables communication between families and health care providers. It improves end-of-life care support to children and their families and facilitates less invasive diagnostic and therapeutic interventions at the end of life. Worldwide children with cancer are infrequently referred to palliative care and referred late in the illness trajectory. Most of the children referred to palliative care receive some form of cancer-directed therapy in their last days. Children in low and low-middle income countries are less likely to access palliative care due to a lack of awareness amongst paediatric oncologists about palliative care and the reduced number of services providing palliative care. A three-tier model is proposed to provide palliative care in paediatric oncology, where most children with palliative care needs are managed by paediatric oncologists and a smaller number with complex physical and psychosocial needs are managed by paediatric palliative care specialists. There are several palliative care models in paediatric oncology practised globally. However, no one model was considered better or superior, and the choice of model depended on the need, preferences identified, and available resources.
Summary
Children with cancer are sparingly referred to palliative care and referred late and oncologists and haematologists gatekeep the referral process. Knowledge on palliative care referral in paediatric oncology settings might enhance collaboration between paediatric oncology and paediatric palliative care.
Objectives We studied the impact of a standardized continuity care intensivists (CCIs) program on patient and family outcomes for long-stay patients in the pediatric intensive care unit (PICU), also assessing the intervention's acceptability and feasibility.
Methods A patient-level, unblinded randomized-controlled trial in a PICU at a large children's hospital. Participants included: (1) patients with ≥ 7 days PICU admission and likely to stay another 7 days; (2) their parents; (3) PICU attendings participating as continuity attendings; and (4) PICU attendings providing usual care (UC). We examined a bundled intervention: (1) standardized continuity attending role, (2) communication training course for CCI, and (3) standardized timing of contact between CCI and patient/family.
Results Primary outcome was patient PICU length of stay. Secondary outcomes included patient, parental, and clinician outcomes. We enrolled 115 parent-patient dyads (231 subjects), 58 patients were randomized into treatment arm and 56 into the UC arm. Thirteen attendings volunteered to serve as CCI, 10 as UC. No association was found between the intervention and patient PICU length of stay (p = 0.5), other clinical factors, or parental outcomes. The intervention met a threshold for feasibility of enrollment, retention, and implementation while the majority of providers agreed the intervention was acceptable with more efficient decision making. Thirty percent CCIs felt the role took too much time, and 20% felt time was not worth the benefits.
Conclusion CCI intervention did not impact patient or family outcomes. PICU attendings believed that the implementation of the CCI program was feasible and acceptable with potential benefits for efficiency of decision making.
Pediatric Palliative Care: A Model for Exemplary Practice lays out a road map for
health-care providers interested in optimizing care for seriously ill children
and their families.
Grounded in clinical practice and the study of positive rather than
problematic encounters between providers and parents, this book presents
an evidence-based model of exemplary interaction. The chapters offer a
clear understanding of the complex, holistic process of interaction between
providers and parents, as well as the personal and professional knowledge
and skills needed to interact in optimal ways.
This is a one-of-a-kind guidebook for health-care providers interested in
(re)discovering how to maximize positive outcomes for both families and
providers. It is also a valuable source of inspiration for educators, supervisors,
and hospital administrators who want to facilitate personal and professional
development and create supportive environments for students, providers,
seriously ill children, and their families.
Objective: To assess parental decision-making preferences when caring for a child with serious illness and to evaluate for an association between preferences and parental trust in physicians, and potential modification of this association by parental anxiety or depression. Methods: We analyzed cross-sectional data from 200 parents of 158 children in the United States who had life-threatening illnesses and whose attending physicians thought that the parents would have to make major medical decision in the next 12 to 24 months. Parents completed measures of decision-making preferences, trust in physicians, anxiety, and depression. Results: Higher reported levels of trust were associated with lower preferences for autonomous decision making (Spearman correlation = -0.24; 95% confidence interval [CI] = -0.36 to -0.01; p < 0.008). Among parents with higher levels of trust, increasing anxiety scores were associated with decreasing preference for autonomy, whereas among parents with lower levels of trust, increasing anxiety scores showed an increasing preference for autonomy (regression coefficient = -0.01; 95% CI = -0.02 to -0.001; p ≤ 0.03). Conclusions: Decreasing trust in physicians is associated with a higher preference for autonomous decision making. Parents who have higher levels of anxiety exhibit this association more strongly. Decision support for parents of children with serious illness should use strategies to respect parental decision-making preferences, address potential distrust, and provide mental health support to parents who are anxious or depressed.
Background: Parents previously identified eight core functions of communication with clinicians in pediatric oncology. Objective: To determine clinicians' views on communication functions in pediatric oncology. Design: In 10 focus groups with 59 clinicians at two academic centers, we asked open-ended questions about communication goals and purposes. Then we presented definitions of eight communication functions previously described by parents and explored clinicians' perspectives. Setting/Subjects: We performed separate focus groups for nurses, nurse practitioners, physicians, and psychosocial professionals. Measurements: Thematic analysis of focus group transcripts. Results: Clinicians identified six functions in response to open-ended questions. After reviewing the eight functions described by parents, all clinicians agreed with the framework: building relationships, exchanging information, making decisions, enabling family self-management, managing uncertainty, responding to emotions, supporting hope, and providing validation. Conclusions: Pediatric oncology clinicians corroborated this functional communication framework. Clinicians and researchers can utilize this framework to guide care and research in the future.
A survey of hospice and specialist palliative care services in the UK in the year 1994-5 was undertaken, enquiring about inpatient, home care and day care services. Over 500 questionnaires were sent out in June 1995 and replies were analysed by the Hospice Information Service. Details of admissions, deaths, discharges and length of patient care are given, as well as an analysis of ethnic grouping, diagnosis, age and sex of patients. The response rates to various parts of the questionnaire are tabulated and national estimates are made of the numbers of patients receiving palliative care from specialist providers. The survey is one in a series of annual surveys and the development of specialist palliative care services over the last five years is discussed.
The postoperative prescription and administration of analgesics following cardiac surgery for 50 children were compared with those of 50 adults. Six children were the only patients in the sample who were prescribed no postoperative analgesics. Overall, children were prescribed significantly fewer potent narcotics. The administration data revealed even more pronounced group differences. During the observation period, children received 30% of all analgesic administrations while adults received 70%. Some possible reasons for these age differences in analgesic usage are presented, and implications regarding the adequacy of postoperative pain control in children are discussed.
In an effort to meet the unique needs of terminally ill patients and their loved ones within underserved minority populations, hospices are attempting to learn more about the diverse cultures represented in their communities. This paper will discuss one hospice's experience and perceptions of barriers to providing hospice care to individuals of diverse cultural backgrounds and the steps taken to more effectively serve them.
Life-threatening illness is fortunately rare in children. Some children, however, will need palliative care for symptom control; psychological support may be needed by the child and the child's family; and families may require help with decisions about life-prolonging treatment. Providing consistent high-quality care for a relatively uncommon problem is difficult. Adult palliative care services, liaison with pediatricians can help provide this care.
This retrospective chart review presents the patient characteristics and utilization of the home-based palliative care program at The Hospital for Sick Children in Toronto. A total of 126 children dying from a broad spectrum of diseases was admitted during the period 1986-1994, referred from neurosurgery, genetic/metabolic, neurology, neonatology, nephrology, cardiology, general pediatrics, general surgery, and pulmonology. At the time of review, 15 patients remained alive and 18 had been discharged from the program. Mean age at the time of referral was 4.8 +/- 0.51 years and mean age at death was 5.3 +/- 0.55 years. The mean number of days in hospital was 26.5 +/- 14.6 while days spent at home averaged 98.4 +/- 15.2; thus 80% of the children's remaining time was spent at home. The average number of parent-team contacts was 3.5 +/- 0.9 by pager and 24.0 +/- 2.9 by telephone. Of the 93 patients who died in the program, 53% died at home, 18% died in community hospitals, and 29% died in a tertiary care facility. Analgesic medications were administered to 54% of the patients; 56% of these then required opioid analgesia for pain and symptom management. Home-based palliative care appeared to be an effective program for many children with a variety of terminal illnesses after adequate supports for the child and family had been established.
Canuck Place, North America's first free-standing pediatric hospice of its kind, opened in 1995 in British Columbia, Canada. The province-wide program encompasses a broad spectrum of services intended to support community-based care and provide periodic, facility-based respite and palliative care to children with life-threatening, progressive illness and to their families. Loss and grief support is another integral component of the program. The concept of pediatric hospice care is founded on the premise that dying children and their families can benefit from care designed to maximize present quality of life; yet, the creation of such programs must be based on demonstrated need. One vital step in the development of the Canuck Place program was assessing the need for such a program within the province. Data from both traditional quantitative and less traditional qualitative sources were used to document and put forth an argument in support of developing a children's hospice program. The final report addressed several components that are summarized in this article for the purposes of assisting others who may wish to undertake similar projects in their own communities.
This study examined whether patients who are not fluent in English receive less than optimal palliative care. The subjects were 130 consecutive patients (24 non-English speakers, NE, and 106 English speakers, E) with advanced malignant disease who were admitted to three metropolitan-area hospitals and followed for 6 months or until death. 92% of patients who were unaware of their diagnosis were NE. Control of non-pain symptoms was worse for NE patients than for E patients during their last two months. There was an increased prevalence of mood disturbance in NE patients during their first two months in the study. Of the 102 (83 E, 19 NE) patients who died during the study period, no NE patients died at home. These results suggest that patients not fluent in English received less optimal palliative care. Communication of the diagnosis and prognosis requires the cooperation of the patients' families as well as the use of professional interpreters. Further research is necessary to identify the differences in cultural attitudes that may have contributed to these findings.
Cancer is the second leading cause of death in children, after accidents. Little is known, however, about the symptoms and suffering at the end of life in children with cancer.
In 1997 and 1998, we interviewed the parents of children who had died of cancer between 1990 and 1997 and who were cared for at Children's Hospital, the Dana-Farber Cancer Institute, or both. Additional data were obtained by reviewing medical records.
Of 165 eligible parents, we interviewed 103 (62 percent), 98 by telephone and 5 in person. The interviews were conducted a mean (+/-SD) of 3.1+/-1.6 years after the death of the child. Almost 80 percent died of progressive disease, and the rest died of treatment-related complications. Forty-nine percent of the children died in the hospital; nearly half of these deaths occurred in the intensive care unit. According to the parents, 89 percent of the children suffered "a lot" or "a great deal" from at least one symptom in their last month of life, most commonly pain, fatigue, or dyspnea. Of the children who were treated for specific symptoms, treatment was successful in 27 percent of those with pain and 16 percent of those with dyspnea. On the basis of a review of the medical records, parents were significantly more likely than physicians to report that their child had fatigue, poor appetite, constipation, and diarrhea. Suffering from pain was more likely in children whose parents reported that the physician was not actively involved in providing end-of-life care (odds ratio, 2.6; 95 percent confidence interval, 1.0 to 6.7).
Children who die of cancer receive aggressive treatment at the end of life. Many have substantial suffering in the last month of life, and attempts to control their symptoms are often unsuccessful. Greater attention must be paid to palliative care for children who are dying of cancer.