'We didn't tell everybody because everybody didn't need to know': An examination of parental disability-disclosure of spina bifida
qualitative study; No terms assigned; communication privacy management; disability-disclosure; self-disclosure; spina bifida
This qualitative study sheds light on the process that parents go through as they learn of a spina bifida diagnosis and the communication strategies that are used to discuss an expected disability diagnosis with others. Interviews with 30 participants discovered that there were immediate disclosures made with family and close friends. Additionally, circumstantial disclosures took place when returning to routine behaviors. Participants described five distinctive criteria that developed a privacy boundary: self-blame, grief, helping others cope, maintaining privacy of child, and stigma. Implications for parents, medical professionals, and communication scholars are discussed.
Copeland K; Lasater BAL
Disability & Society
2018
<a href="http://doi.org/10.1080/09687599.2018.1498321" target="_blank" rel="noreferrer noopener">10.1080/09687599.2018.1498321</a>
"As if Nothing Happened": Experiences of Bereaved Parents in Romania
bereavement;Grief;Romania;trauma;traumatic stress
Prior research has found high levels of distress in parents who experience the death of a child; however, Romanian parents, whose experiences are influenced by the nation's shared historical trauma, have not been studied. This mixed-methods study found very high levels of distress in a sample of 237 bereaved parents in Romania, primarily women. Specifically, 89% of respondents scored above the clinical cutoff for trauma responses, 66% did so for anxious responses, and 82% did so for depressive responses. Qualitative analyses of respondents' narratives suggest that, through complex interactions between political, social, and medical systems, the lack of care after the death of a child seems to incite additional distress in parents. These findings warrant further exploration of traumatic grief in Romania, especially in the context of historical and political trauma, and of ways in which support can be provided to grieving parents in this unique cultural milieu.
Thieleman K;Cacciatore J
Omega
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1177/0030222818799949" target="_blank" rel="noreferrer noopener">10.1177/0030222818799949</a>
"I don't want this to be in my biography": A qualitative study of the experiences of grandparents losing a grandchild due to a neurological or oncological disease
human; child; male; terminal care; clinical article; diagnosis; comfort; palliative therapy; conference abstract; friend; Switzerland; oncology; semi structured interview; qualitative research; grandchild; grandparent; literature; cause of death; memory; son
Background/aim: Pediatric Palliative Care (PPC) in hospitals mainly focuses on the parents and siblings of children suffering from a life limiting disease. However, most grandparents are also highly involved in the caring of the child and require additional attention. As little is known about the experiences of grandparents losing a grandchild, this study aimed to address this research gap by investigating the experiences of grandparents throughout the end of life care and after the death of a grandchild. Neurological and oncological diseases are the most common causes of death in children older than one year. Methods: A qualitative approach using semi-structured interviews was chosen. Fifteen grandparents of ten deceased children were interviewed. Four grandchildren died due to an oncology disease and six to a neurological one. Participants were recruited among the families attended by the PPC team of a children's hospital in northern Switzerland. Grandparents were interviewed at least one year after the death of the grandchild. The data was analyzed employing reconstructive interview analysis. Results: Regardless of the diagnosis and death circumstances of the child, participants described major impact that the child's death had on them and their entire family. Grandparents felt obliged to support the family and constantly be a supportive pillar for the parents. They beared a double psychological burden as they care and mourn twice; for their dying grandchild and for their daughter or son. Grandparents also struggled with communication difficulties concerning disease and death when in contact with other family members, friends and acquaintances. They tried to make sense and processed their loss by remembering the deceased child and finding comfort in the fact that the child and the family did not have to suffer longer painful symptoms. All participants reported being grateful for the time they were able to spend with their grandchild. Conclusion: These findings emphasize the importance of understanding and identifying the suffering of the grandparents. PPC teams can achieve this by actively making contact with them, taking their concerns seriously and demonstrating appreciation for their role in supporting the family.
Flury M; Orellana-Rios C; Bergstrasser E; Becker G
Palliative Medicine
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1177/0269216318769196" target="_blank" rel="noreferrer noopener">10.1177/0269216318769196</a>
"I'm Not a Spiritual Person." How Hope Might Facilitate Conversations About Spirituality Among Teens and Young Adults With Cancer
adolescent
Context: Supporting patients' spiritual needs is central to palliative care. Adolescents and young adults (AYAs) may be developing their spiritual identities; it is unclear how to navigate conversations concerning their spiritual needs. Objectives: To 1) describe spiritual narratives among AYAs based on their self-identification as religious, spiritual, both, or neither and 2) identify language to support AYAs' spiritual needs in keeping with their self-identities. Methods: In this mixed-methods, prospective, longitudinal cohort study, AYAs (14-25 years old) with newly diagnosed cancer self-reported their "religiousness" and "spirituality." One-on-one, semistructured interviews were conducted at three time points (within 60 days of diagnosis, six to 12 months, and 12-18 months later) and included queries about spirituality, God/prayer, meaning from illness, and evolving self-identity. Post hoc directed content analysis informed a framework for approaching religious/spiritual discussions. Results: Seventeen AYAs (mean age 17.1 years, SD = 2.7, 47% male) participated in 44 interviews. Of n = 16 with concurrent survey responses, five (31%) self-identified as both "religious and spiritual," five (31%) as "spiritual, not religious," one (6%) as "religious, not spiritual," and five (31%) as neither. Those who endorsed religiousness tended to cite faith as a source of strength, whereas many who declined this self-identity explicitly questioned their preexisting beliefs. Regardless of self-identified "religiousness" or "spirituality," most participants endorsed quests for meaning, purpose, and/or legacy, and all included constructs of hope in their narratives. Conclusion: AYA self-identities evolve during the illness experience. When words such as "religion" and "spirituality" do not fit, explicitly exploring hopes, worries, meaning, and changing life perspectives may be a promising alternative.
Barton KS; Tate T; Lau N; Taliesin KB; Waldman ED; Rosenberg AR
Journal of Pain and Symptom Management.
2018
<a href="http://doi.org/%2010.1016/j.jpainsymman.2018.02.001" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2018.02.001</a>
"They Say I Should not Think About It:": A Qualitative Study Exploring the Experience of Infant Loss for Bereaved Mothers in Kumasi, Ghana
death and dying; bereavement; Male; Infant Newborn; Young Adult; Humans; Adult; Female; Infant; Interviews as Topic; Infant Mortality; Adaptation Psychological; Mothers/ psychology; Ghana; perinatal death; qualitative research; infant mortality; Grief; infant loss; low-resource country; Medically Underserved Area
Meyer AC; Opoku C; Gold K J
Omega (Westport)
2018
<a href="http://doi.org/10.1177/0030222816629165" target="_blank" rel="noreferrer noopener">10.1177/0030222816629165</a>
A Comparison of Symptom Management for Children with Cancer in Iran and in the Selected Countries: A Comparative Study
symptom management; children; palliative care; Cancer
Pakseresht M; Baraz S; Rassouli M; Rejeh N; Rostami S; Mojen LK
Indian Journal of Palliative Care
2018
<a href="http://doi.org/10.4103/ijpc.ijpc_33_18" target="_blank" rel="noreferrer noopener">10.4103/ijpc.ijpc_33_18</a>
A cross-sectional pilot study of compassion fatigue (CF), burnout (BO), and compassion satisfaction (CS) in pediatric palliative care (PPC) providers in the United States
Fatigue; Palliative Care; Pilot Projects; United States; burnout; pediatric palliative care; Cesarean Section; Compassion fatigue; compassion satisfaction
OBJECTIVE: Compassion fatigue (CF) is secondary traumatic distress experienced by providers from contact with patients' suffering. Burnout (BO) is job-related distress resulting from uncontrollable workplace factors that manifest in career dissatisfaction. Compassion satisfaction (CS) is emotional fulfillment derived from caring for others. The literature on BO in healthcare providers is extensive, whereas CF and CS have not been comprehensively studied. Because of ongoing exposure to patient and family distress, pediatric palliative care (PPC) providers may be at particular risk for CF. We conducted a cross-sectional pilot study of CF, BO, and CS among PPC providers across the United States. METHOD: The Compassion Fatigue and Satisfaction Self-Test for Helpers and a questionnaire of professional and personal characteristics were distributed electronically and anonymously to PPC physicians and nurses. Logistic and linear regression models for CF, BO, and CS as a function of potential risk factors were constructed. RESULTS: The survey response rate was 39%, primarily consisting of female, Caucasian providers. The prevalence of CF, BO, and CS was 18%, 12%, and 25%, respectively. Distress about a "clinical situation," physical exhaustion, and personal loss were identified as significant determinants of CF. Distress about "coworkers," emotional depletion, social isolation, and "recent involvement in a clinical situation in which life-prolonging activities were not introduced" were significant determinants of BO. Physical exhaustion, personal history of trauma, "recent involvement in a clinical situation in which life-prolonging activities were not introduced," and not discussing distressing issues were significant predictors of lower CS scores. Significance of results CF and BO directly influence the well-being and professional performance of PPC providers. To provide effective compassionate care to patients, PPC providers must be attentive to predictors of these phenomena. Further work is needed to explore additional causes of CF, BO, and CS in PPC providers as well as potential interventions.
Kase SM; Waldman ED; Weintraub AS
Palliative and Supportive Care
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1017/s1478951517001237" target="_blank" rel="noreferrer noopener">10.1017/s1478951517001237</a>
A Metasynthesis: Uncovering What Is Known About the Experiences of Families With Children Who Have Life-limiting and Life-threatening Illnesses
hope; life-limiting illness; Life-threatening illness; Metasynthesis; Parent experiences
PURPOSE: To conduct a metasynthesis of qualitative research exploring parents' psychosocial experiences during complex and traumatic life transitions related to caring for a child with a life-limiting (LLI) or life-threatening illness (LTI). BACKGROUND: Parents' experiences of caring for a child impacted by an LLI or LTI are not clearly understood, and holistic, comprehensive pediatric nursing care for parents who have children with LLI and LTIs continues to be developed as treatment improves and survival is extended. REVIEW METHODS: Predetermined inclusion and exclusion criteria were used to review qualitative studies. Those included were appraised, classified, and synthesized using systematic procedures guided by Sandelowski and Barroso (2006). DATA SOURCES: A systematic search of qualitative research was conducted by an experienced librarian to identify and retrieve studies from 10 databases. RESULTS: Of the 3515 studies screened, 23 were included. A synthesis of the findings demonstrated that parents experience profound and pervasive uncertainty, leading to their own illness experience being described as a dual reality in which fighting for survival and recognizing the threat of their child's death were daily challenges. Three key processes emerged: the devastation of living with uncertainty, the emergence of hope, and moving forward. CONCLUSION: The integration of findings adds to the current body of knowledge by highlighting the very complex experiences that parents undergo. These findings can support a more comprehensive pediatric nursing plan of care that accounts for the intricacies of the parental experience and the importance of hope.
2018-01
Bally JMG; Smith NR; Holtslander L; Duncan V; Hodgson-Viden H; Mpofu C; Zimmer M
Journal Of Pediatric Nursing
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.pedn.2017.11.004" target="_blank" rel="noreferrer">10.1016/j.pedn.2017.11.004</a>
A new kind of language barrier: Examining disparities in medical teams' referrals of palliative care patients to Pediatric psychology
United States; death; education; palliative therapy; retrospective study; cancer patient; language; complication; malignant neoplasm; patient referral; conference abstract; medical record review; human; child; female; male; controlled study; adult; pediatric patient; child psychology; biological product; social care; speech
Background/Objectives: As cancer care has improved, so has the understanding that children with cancer are at risk for psychological distress. The American Academy of Pediatrics has highlighted the importance of addressing these concerns. Our study aims to identify how cultural and language factors may influence whether psychology is involved in a patient and family's care. Preliminary literature in adult-focused research suggests that a vast majority of those referred to psychology are English speaking. Design/Methods: The medical records of Pediatric patients who died from cancer or its complications over a consecutive 18 month-period were examined via retrospective chart review. Patients' demographic information was collected, along with information about whether their medical team requested a psychology consultation. Details about consultations and subsequent intervention were collected. Results: Eighty-nine charts were reviewed. Patients ranged from age 3 months to 25 years. Data indicated that non-English speaking families were referred to psychology at nearly half the rate of English-speaking families (i.e., 16% of patients as compared to 31% of patients). There did not appear to be any statistically significant differences between the referred and non-referred groups aside from the family's primary language. There was a wide range of when patients were referred (4-3168 days before death). Conclusions: Results indicate that, though the comprehensive biological-psychological-social care of children is widely recognized as important, there is a clear disparity in the services offered to families that speak languages other than English. Further research should be conducted to understand referral barriers and missed opportunities to utilize Pediatric psychology, particularly as hospitals in the United States continue to diversify. Finally, offering providers education about how to identify common psychological concerns, particularly in those hailing from different cultural backgrounds, may be particularly valuable in closing the identified referral gap; our poster will make culturally-informed recommendations for such a training.
Schneider N; Steinberg D; Karfunkle B
Pediatric Blood and Cancer
2018
<a href="http://doi.org/10.1002/pbc.27455" target="_blank" rel="noreferrer noopener">10.1002/pbc.27455</a>
A possibility for strengthening family life and health: Family members' lived experience when a sick child recieves home care in sweden
mother; responsibility; personal experience; family life; home care; nonhuman; childhood cancer; sibling; wellbeing; genetic transcription; expectation; conference abstract; human; child; female; male; interview; clinical article; attention; father; Sweden; lion; welfare
Background/Objectives: Families often prefer home care to hospital care, and home-care services for ill children are increasing worldwide with limited knowledge of families' needs during curative and palliative home care. The aim of this study was to elucidate family members' lived experience when a sick child received home care from county-based healthcare services. Design/Methods: A descriptive qualitative design was chosen. Twelve families including sick children receiving home care and their mothers, fathers and siblings in the south of Sweden were interviewed between December 2015 and January 2017. The transcribed interviews were analyzed using a hermeneutic phenomenological approach. Results: The family members' lived experience was described in three essential themes. Strengthening family life relates to how home care induced freedom and luxury in a strained period of life and supported the families' everyday life. Usual social activities and relations were maintained as time and energy was saved when receiving home care. Promoting health relates to how the family members' burden of illness decreased as the child's signs of illness alleviated and the well-being of the whole family increased when the child received care in the home. This provided a peaceful respite for family members' psychosocial recovery. The third theme, Creating alliances, relates to the importance of creating trustful alliances for communicating participation in care. If trustful alliances were not created, parents felt an overwhelming responsibility and family members became anxious. Conclusions: The findings suggest that care in the family's home is a useful complement to hospital care when given with close attention to family members' needs, as positive effects of home care might be jeopardized when expectations are not successfully shared. The study was funded by the Swedish Childhood Cancer Foundation, The Swedish Research Council for Health, Working Life and Welfare, The Lions Research Foundation, and The Jonas Foundation.
Castor C; Hansson H; Landgren K; Kristensson HI
Pediatric Blood and Cancer
2018
<a href="http://doi.org/10.1002/pbc.27455" target="_blank" rel="noreferrer noopener">10.1002/pbc.27455</a>
A post-mortem population survey on foetal-infantile end-of-life decisions: a research protocol
Neonates; End-of-life decisions; Mortality follow-back survey; Population-based; Stillbirths; Termination of pregnancy
BACKGROUND: The death of a child before or shortly after birth is frequently preceded by an end-of-life decision (ELD). Population-based studies of incidence and characteristics of ELDs in neonates and infants are rare, and those in the foetal-infantile period (> 22 weeks of gestation - 1 year) including both neonates and stillborns, are non-existent. However, important information is missed when decisions made before birth are overlooked. Our study protocol addresses this knowledge gap. METHODS: First, a new and encompassing framework was constructed to conceptualise ELDs in the foetal-infantile period. Next, a population mortality follow-back survey in Flanders (Belgium) was set up with physicians who certified all death certificates of stillbirths from 22 weeks of gestation onwards, and infants under the age of a year. Two largely similar questionnaires (stillbirths and neonates) were developed, pilot tested and validated, both including questions on ELDs and their preceding decision-making processes. Each death requires a postal questionnaire to be sent to the certifying physician. Anonymity of the child, parents and physician is ensured by a rigorous mailing procedure involving a lawyer as intermediary between death certificate authorities, physicians and researchers. Approval by medical societies, ethics and privacy commissions has been obtained. DISCUSSION: This research protocol is the first to study ELDs over the entire foetal-infantile period on a population level. Based on representative samples of deaths and stillbirths and applying a trustworthy anonymity procedure, the research protocol can be used in other countries, irrespective of legal frameworks around perinatal end-of-life decision-making.
Dombrecht L; Beernaert K; Roets E; Chambaere K; Cools F; Goossens L; Naulaers G; De Catte L; Cohen J; Deliens L
BMC Pediatrics
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here.
<a href="http://doi.org/10.1186/s12887-018-1218-4" target="_blank" rel="noreferrer noopener">10.1186/s12887-018-1218-4</a>
A qualitative study of health care professionals’ views and experiences of paediatric advance care planning
Adolescence; Advance Care Planning; Attitude of Health Personnel; Child; Community -- England; Conversation; Death; Documentation; England; Family Attitudes; Hospices -- England; Hospital; Hospitals; Human; Infant; Medical Staff; Multidisciplinary Care Team; Newborn; Palliative Care; Pediatric Care -- Psychosocial Factors; Preschool; Qualitative Studies; Semi-Structured Interview; Terminal Care; Thematic Analysis; Time Factors
Background Good end-of-life care planning is vital to ensure optimal care is provided for patients and their families. Two key factors are open and honest advance care planning conversations between the patient (where possible), family, and health care professionals, focusing on exploring what their future wishes are; and the development of an advance care plan document. However, in paediatric and neonatal settings, there has been little research to demonstrate how advance care planning conversations take place. This study explored health care professionals’ views and experiences of paediatric advance care planning in hospitals, community settings and hospices. Methods A qualitative methodology was employed using purposive sampling of health care professionals involved in the end-of-life care for children aged 0–18 years known to the hospital palliative care team, and had died at least three months before, but less than 18 months prior to the study. Ethics committee approval was obtained for the study. Located in the North of England, the study involved three hospitals, a children’s hospice, and community services. Data were collected using semi-structured, digitally recorded, telephone interviews. All interviews were transcribed verbatim and subjected to thematic analysis. Results Twenty-one health care professionals participated, including generalist paediatric staff as well as specialist palliative care staff. Two themes were generated from the study: The timing of planning conversations, including waiting for the relationship with the family to form; the introduction of parallel planning; avoiding a crisis situation. Secondly, supporting effective conversations around advance care planning, including where to have the conversation; introducing the conversation; and how to approach the topic encompassing the value of advance care planning and documentation for families. Conclusion The timing of when to start the advance care planning conversations remains an issue for health care professionals. The value of doing it in stages and considering the environment where the conversations are held was noted. Timely planning was seen as vital to avoid difficult conversations at a crisis point and for co-ordination of care. Good advance care planning is to provide the best person-centred care for the child and experience for the family.
Jack BA; Mitchell TK; O'Brien MR; Silverio SA; Knighting K
BMC Palliative Care
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1186/s12904-018-0347-8" target="_blank" rel="noreferrer noopener">10.1186/s12904-018-0347-8</a>
A randomised trial of early palliative care for maternal stress in infants prenatally diagnosed with single-ventricle heart disease
Chd; Hypoplastic Left Heart Syndrome; Paediatric palliative care; Parental stress
Children with single-ventricle disease experience high mortality and complex care. In other life-limiting childhood illnesses, paediatric palliative care may mitigate maternal stress. We hypothesised that early palliative care in the single-ventricle population may have the same benefit for mothers. In this pilot randomised trial of early palliative care, mothers of infants with prenatal single-ventricle diagnoses completed surveys measuring depression, anxiety, coping, and quality of life at a prenatal visit and neonatal discharge. Infants were randomised to receive early palliative care - structured evaluation, psychosocial/spiritual, and communication support before surgery - or standard care. Among 56 eligible mothers, 40 enrolled and completed baseline surveys; 38 neonates were randomised, 18 early palliative care and 20 standard care; and 34 postnatal surveys were completed. Baseline Beck Depression Inventory-II and State-Trait Anxiety Index scores exceeded normal pregnant sample scores (mean 13.76+/-8.46 versus 7.0+/-5.0 and 46.34+/-12.59 versus 29.8+/-6.35, respectively; p=0.0001); there were no significant differences between study groups. The early palliative care group had a decrease in prenatal to postnatal State-Trait Anxiety Index scores (-7.6 versus 0.3 in standard care, p=0.02), higher postnatal Brief Cope Inventory positive reframing scores (p=0.03), and a positive change in PedsQL Family Impact Module communication and family relationships scores (effect size 0.46 and 0.41, respectively). In conclusion, these data show that mothers of infants with single-ventricle disease experience significant depression and anxiety prenatally. Early palliative care resulted in decreased maternal anxiety, improved maternal positive reframing, and improved communication and family relationships.
2018-01
Hancock HS; Pituch K; Uzark K; Bhat P; Fifer C; Silveira M; Yu S; Welch S; Donohue J; Lowery R; Aiyagari R
Cardiology In The Young
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1017/s1047951117002761" target="_blank" rel="noreferrer">10.1017/s1047951117002761</a>
A Review of Apps for Calming, Relaxation, and Mindfulness Interventions for Pediatric Palliative Care Patients
Children; Meditation; mobile applications; multimedia; Palliative; relaxation; Stress; technology
Patients and families increasingly use mobile apps as a relaxation and distraction intervention for children with complex, chronic medical conditions in the waiting room setting or during inpatient hospitalizations; and yet, there is limited data on app quality assessment or review of these apps for level of engagement, functionality, aesthetics, or applicability for palliative pediatric patients. The pediatric palliative care study team searched smartphone application platforms for apps relevant to calming, relaxation, and mindfulness for pediatric and adolescent patients. Apps were reviewed using a systematic data extraction tool. Validated Mobile Application Rating Scale (MARS) scores were determined by two blinded reviewers. Apps were then characterized by infant, child, adolescent, and adult caregiver group categories. Reviewer discussion resulted in consensus. Sixteen of the 22 apps identified were included in the final analysis. The apps operated on either iOS or Android platforms. All were available in English with four available in Spanish. Apps featured a relaxation approach (12/16), soothing images (8/16), and breathing techniques (8/16). Mood and sleep patterns were the main symptoms targeted by apps. Provision of mobile apps resource summary has the potential to foster pediatric palliative care providers' knowledge of app functionality and applicability as part of ongoing patient care.
2018-01
Weekly T; Walker N; Beck J; Akers S; Weaver M
Children (basel)
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.3390/children5020016" target="_blank" rel="noreferrer">10.3390/children5020016</a>
A Review of the Integrated Model of Care: An Opportunity to Respond to Extensive Palliative Care Needs in Pediatric Intensive Care Units in Under-Resourced Settings
Humanities; pediatric intensive care; Child; Health Resources; Humans; Intensive Care Units; Only Child; Palliative Care; Pediatric; pediatric palliative care; child; consultative model; Humanism; integrated model of care; low-resource settings; pediatric critical care; Pediatric Palliative Screening Scale
It is estimated that 6.3 million children who die annually need pediatric palliative care (PPC) and that only about 10% of them receive the attention they need because about 98% of them live in under-resourced settings where PPC is not accessible. The consultative model and the integrated model of care (IMOC) are the most common strategies used to make PPC available to critically ill children. In the consultative model, the pediatric intensive care unit (PICU) team, the patient, or their family must request a palliative care (PC) consultation with the external PC team for a PICU patient to be evaluated for special care needs. While the consultation model has historically been more popular, issues related to specialist availability, referral timing, staff's personal biases, misconceptions about PC, and other factors may impede excellent candidates from receiving the attention they need in a timely manner. Contrastingly, in the IMOC, family-centered care, PC tasks, and/or PC are a standard part of the treatment automatically available to all patients. In the IMOC, the PICU team is trained to complete critical and PC tasks as a part of normal daily operations. This review investigates the claim that the IMOC is the best model to meet extensive PPC needs in PICUs, especially in low-resource settings; based on an extensive review of the literature, we have identified five reasons why this model may be superior. The IMOC appears to: (1) improve the delivery of PPC and pediatric critical care, (2) allow clinicians to better respond to the care needs of patients and the epidemiological realities of their settings in ways that are consistent with evidence-based recommendations, (3) facilitate the universal delivery of care to all patients with special care needs, (4) maximize available resources, and (5) build local capacity; each of these areas should be further researched to develop a model of care that enables clinicians to provide pediatric patients with the highest attainable standard of health care. The IMOC lays out a pathway to provide the world's sickest, most vulnerable children with access to PPC, a human right to which they are entitled by international legal conventions.
Grunauer M; Mikesell C
Frontiers in Pediatrics
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.3389/fped.2018.00003" target="_blank" rel="noreferrer noopener">10.3389/fped.2018.00003</a>
A simple system for symptom assessment in pediatric palliative care patients with cancer: A preliminary report
anorexia; caregiver; child; conference abstract; controlled study; fatigue; female; health care quality; human; insomnia; irritability; loss of appetite; major clinical study; male; malignant neoplasm; nervousness; pain; palliative therapy; symptom assessment
Background: Systematic symptom assessment is not a standard of care in children with cancer. Many well-known symptom assessment tools are lengthy or difficult to integrate into a daily pediatric palliative care practice. We created a series of brief and simple questions to be systematically given to children and their caregivers. The primary objective was to determine the percentage of eligible children and caregivers exposed to the questions that were able to complete the assessment. Secondary objectives included documenting the symptom burden at time of consultation, evaluating the level of agreement in symptom reporting between children and caregivers, as well as between children/caregivers and the referring medical team. Method(s): A series of systematic questions were presented to all caregivers (if present) and children who were 7 years of age or older at time of initial consultation with pediatric palliative care. Result(s): 122 consecutive children and caregivers were given the survey. 107/108 (99%) of eligible caregivers and 83/97 (86%) of eligible children successfully completed the survey. Lack of appetite (child - 72/83, 87%; caregiver - 89/107, 83%) and pain (child - 71/83, 86%; caregiver - 86/107, 80%) were the most commonly reported symptoms. Caregivers reported irritability (p = 0.005) and nervousness (p < 0.0001) more frequently than children. Referring medical teams significantly under-diagnosed psychological and other less clinically evident symptoms such as anorexia, fatigue, and insomnia (p < 0.0001). Conclusion(s): Our series of questions is easy to complete by children and caregivers. Systematic symptom assessment of children with cancer needs to become a true standard of care.
Madden K; Charone M; Dibaj S; Mills S; Williams J L; Liu D; Bruera E
Journal of Clinical Oncology. Conference
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1200/JCO.2018.36.34_suppl.81" target="_blank" rel="noreferrer noopener">10.1200/JCO.2018.36.34_suppl.81</a>
A survey demonstrates limited palliative care structures in paediatric nephrology from the perspective of a multidisciplinary healthcare team
Children; palliative care; dialysis; chronic kidney disease; end stage renal disease
AIM: Children and adolescents with end stage renal disease face a high morbidity and mortality. Palliative care provides a multidisciplinary approach to reduce disease burden and improve quality of life. This study evaluated concepts and current structures of palliative care from the perspective of a multidisciplinary paediatric nephrology team including physicians, nurses and psychosocial health professionals. METHODS: Evaluation was done by an online survey sent to the members of the German Society of Nephrology and to the nurse managers of German paediatric dialysis centres between April 9th 2018 and May 31th 2018. RESULTS: Out of the 52 respondents, 54% were physicians, 21% nurses and 25% psychosocial health professionals. The quality of actual palliative care service was rated as moderate (3.3 on a scale from one to six). Specialised palliative care teams (54%) and the caring paediatric nephrologist (50%) were considered as primarily responsible for palliative care. Two-thirds wished for training in palliative care. In only 15% of the respondents' centres, palliative care specialisation existed. CONCLUSION: Palliative care structures in paediatric nephrology were not sufficient in the view of the multidisciplinary healthcare team. Therefore, efforts should be taken to integrate palliative care into the routine treatment of children and adolescents with chronic kidney diseases. This article is protected by copyright. All rights reserved.
Thumfart J; Bethe D; Wagner S; Pommer W; Rheinlander C; Muller D
Acta Paediatr
2018
<a href="http://doi.org/10.1111/apa.14688" target="_blank" rel="noreferrer noopener">10.1111/apa.14688</a>
A Systematic Review of Race/Ethnicity and Parental Treatment Decision-Making.
Caregivers; Clinical; Databases; Decision Making; Ethnic Groups; Health Resource Utilization; Human; Parental Attitudes; Patient Compliance; Pediatrics; Physician Attitudes; Race Factors; Systematic Review; Terminally Ill Patients
Patient race/ethnicity affects health care utilization, provider trust, and treatment choice. It is uncertain how these influences affect pediatric care. We performed a systematic review (PubMed, Scopus, Web of Science, PsycINFO, Cochrane, and Embase) for articles examining race/ethnicity and parental treatment decision-making, adhering to PRISMA methodology. A total of 9200 studies were identified, and 17 met inclusion criteria. Studies focused on treatment decisions concerning end-of-life care, human papillomavirus vaccination, urological surgery, medication regimens, and dental care. Findings were not uniform between studies; however, pooled results showed (1) racial/ethnic minorities tended to prefer more aggressive end-of-life care; (2) familial tradition of neonatal circumcision influenced the decision to circumcise; and (3) non-Hispanic Whites were less likely to pursue human papillomavirus vaccination but more likely to complete the vaccine series if initiated. The paucity of studies precluded overarching findings regarding the influence of race/ethnicity on parental treatment decisions. Further investigation may improve family-centered communication, parent engagement, and shared decision-making.
Harris VC; Links AR; Walsh J; Schoo DP; Lee AH; Tunkel DE; Boss EF
Clinical Pediatrics
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here.
<a href="http://doi.org/10.1177/0009922818788307" target="_blank" rel="noreferrer noopener">10.1177/0009922818788307</a>
A three pronged approach to improving advance care planning and end of life decision making for patients with life limiting conditions admitted to picu
advance care planning;decision making;Child;clinical audit;conference abstract;conversation;death;education;England;human;information retrieval;intensivist;landscape;palliative therapy
Aims & Objectives: To develop three linked projects to enumerate, reflect upon and identify ways to improve the experience of children with life limiting conditions (LLC) admitted to PICU without previous contact with palliative care services or existing advance care plans (ACP). Methods Three projects included local education, regional data collection and contribution to national debate. An ACP in PICU simulation programme for clinicians in our large quaternary centre. A clinical audit to identify children with pre-existing LLCs with and without ACPs retrieved to PICU by a regional retrieval service in southeast England and who died during the admission for which they were transferred. A national review article engaging palliative care teams and intensivists in considering the current landscape for children with LLC in PICU and analysing the ACP as part of a means to improved care. Results All three projects identified significant areas for further work. The education project outcome was positive, identifying a particular need for ongoing training in handling complex conversations around death and dying. The clinical audit found that the overwhelming majority of patients with LLCs retrieved had no ACP in place. The review piece was more reflective and generated considerable debate amongst the PICU community. Conclusions ACP and end of life care planning is vital for children with LLCs, their families and those who care for them in PICU. There is significant unmet need and significant will to improve the quality of the conversations and services we offer these children and their families and to increase the numbers offered timely ACPs.
Sidgwick P;Randle E;Petros A
Pediatric Critical Care Medicine
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1097/01.pcc.0000537859.14793.d8" target="_blank" rel="noreferrer noopener">10.1097/01.pcc.0000537859.14793.d8</a>
Advance care planning and outcome in pediatric palliative home care
advance care planning; home care; life sustaining treatment; medical order; palliative therapy; article; child; controlled study; death; female; hospice; human; major clinical study; male; resuscitation; retrospective study
Pediatric advance care planning seeks to ensure end-of-life care conforming to the patients/their families' preferences. To expand our knowledge of advance care planning and "medical orders for life-sustaining treatment" (MOLST) in pediatric palliative home care, we determined the number of patients with MOLST, compared MOLST between the four "Together for Short Lives" (TfSL) groups and analyzed, whether there was a relationship between the content of the MOLST and the patients' places of death. The study was conducted as a single-center retrospective analysis of all patients of a large specialized pediatric palliative home care team (01/2013-09/2016). MOLST were available in 179/198 children (90.4%). Most parents decided fast on MOLST, 99 (55.3%) at initiation of pediatric palliative home care, 150 (83.4%) within the first 100 days. MOLST were only changed in 7.8%. Eighty/179 (44.7%) patients decided on a Do Not Attempt Cardio-Pulmonary Resuscitation (DNACPR) order, 58 (32.4%) on treatment limitations of some kind and 41 (22.9%) wished for the entire spectrum of life-sustaining measures (Full Code). Most TfSL group 1 families wanted DNACPR and most TfSL group 3/4 parents Full Code. The majority (84.9%) of all DNACPR patients died at home/hospice. Conversely, all Full Code patients died in hospital (80% in an intensive care setting). The circumstances of the childrens' deaths can therefore be predicted considering the content of the MOLST. Regular advance care planning discussions are thus a very important aspect of pediatric palliative home care.
Hoell JI; Weber HL; Balzer S; Danneberg M; Gagnon G; Trocan L; Borkhardt A; Janssen G; Kuhlen M
Oncotarget
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.18632/oncotarget.24929" target="_blank" rel="noreferrer noopener">10.18632/oncotarget.24929</a>
Advance Care Planning and Parent-Reported End-of-Life Outcomes in Children, Adolescents, and Young Adults With Complex Chronic Conditions
advance care planning; quality of life; end-of-life care; palliative care; complex chronic conditions; parental perspectives
Objectives: For children, adolescents, and young adults with complex chronic conditions advance care planning may be a vital component of optimal care. Advance care planning outcomes research has previously focused on seriously ill adults and adolescents with cancer where it is correlated with high-quality end-of-life care. The impact of advance care planning on end-of-life outcomes for children, adolescents, and young adults with complex chronic conditions is unknown, thus we sought to evaluate parental preferences for advance care planning and to determine whether advance care planning and assessment of specific family considerations during advance care planning were associated with differences in parent-reported end-of-life outcomes. Design: Cross-sectional survey. Setting: Large, tertiary care children's hospital. Subjects: Bereaved parents of children, adolescents, and young adults with complex chronic conditions who died between 2006 and 2015. Interventions: None. Measurement and Main Results: One-hundred fourteen parents were enrolled (54% response rate) and all parents reported that advance care planning was important, with a majority (70%) endorsing that discussions should occur early in the illness course. Parents who reported advance care planning (65%) were more likely to be prepared for their child's last days of life (adjusted odds ratio, 3.78; 95% CI, 1.33-10.77), to have the ability to plan their child's location of death (adjusted odds ratio, 2.93; 95% CI, 1.06-8.07), and to rate their child's quality of life during end-of-life as good to excellent (adjusted odds ratio, 3.59; 95% CI, 1.23-10.37). Notably, advance care planning which included specific assessment of family goals was associated with a decrease in reported child suffering at end-of-life (adjusted odds ratio, 0.23; 95% CI, 0.06-0.86) and parental decisional regret (adjusted odds ratio, 0.42; 95% CI, 0.02-0.87). Conclusions: Parents of children, adolescents, and young adults with complex chronic conditions highly value advance care planning, early in the illness course. Importantly, advance care planning is associated with improved parent-reported end-of-life outcomes for this population including superior quality of life. Further studies should evaluate strategies to ensure high-quality advance care planning including specific assessment of family goals.
DeCourcey DD; Silverman M; Oladunjoye A; Wolfe J
Critical Care Medicine
2018
<a href="http://doi.org/10.1097/ccm.0000000000003472" target="_blank" rel="noreferrer noopener">10.1097/ccm.0000000000003472</a>
All cause mortality rates and home deaths decreased in children with life-limiting diagnoses in Denmark between 1994 and 2014
Aim Specialised paediatric palliative care has not previously been a priority in Denmark. The aim of this study was to support its development and organisation, by examining why and where children died using official national data for 1994–2014. Methods We obtained data on 9462 children who died before the age of 18 from the Danish Register of Causes of Death. The causes of deaths were listed according to the codes in the International Classification of Diseases. Results The all‐cause mortality rate decreased by 52% over the study period, and infants below one year accounted for 61% of all deaths. The decline in infant mortality (26%) primarily reflected fewer deaths due to congenital malformations and chromosomal abnormalities (68%) and perinatal deaths (30%). In children aged one year to 17 years, the substantial decrease (65%) was due to external causes (75%) and neoplasms (57%). The relative proportion of hospital deaths increased, while home deaths decreased. Conclusion All‐cause mortality rate decreased markedly, and the relative proportion of hospital deaths increased. The results may reflect more aggressive and effective treatment attempts to save lives, but some terminally ill children may be deprived of the option of dying at home.
Lykke C; Ekholm O; Schmiegelow K; Olsen M; Sjagren P
Acta Paediatrica
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here.
<a href="http://doi.org/10.1111/apa.14331" target="_blank" rel="noreferrer noopener">10.1111/apa.14331</a>
All-cause mortality rates and home deaths decreased in children with life-limiting diagnoses in Denmark between 1994 and 2014
all cause mortality;childhood mortality;death;home;accident;adolescent;adult;article;automutilation;Epidemiology;Child;chromosome aberration;Epidemiology;congenital malformation;Epidemiology;Denmark;human;infant;infant mortality;International Classification of Diseases;neoplasm;Epidemiology;perinatal death;priority journal
Aim: Specialised paediatric palliative care has not previously been a priority in Denmark. The aim of this study was to support its development and organisation, by examining why and where children died using official national data for 1994-2014. Methods: We obtained data on 9462 children who died before the age of 18 from the Danish Register of Causes of Death. The causes of deaths were listed according to the codes in the International Classification of Diseases. Results: The all-cause mortality rate decreased by 52% over the study period, and infants below one year accounted for 61% of all deaths. The decline in infant mortality (26%) primarily reflected fewer deaths due to congenital malformations and chromosomal abnormalities (68%) and perinatal deaths (30%). In children aged one year to 17 years, the substantial decrease (65%) was due to external causes (75%) and neoplasms (57%). The relative proportion of hospital deaths increased, while home deaths decreased. Conclusion: All-cause mortality rate decreased markedly, and the relative proportion of hospital deaths increased. The results may reflect more aggressive and effective treatment attempts to save lives, but some terminally ill children may be deprived of the option of dying at home.
Lykke C;Ekholm O;Schmiegelow K;Olsen M;Sjogren P
Acta Paediatrica, International Journal of Paediatrics
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1111/apa.14331" target="_blank" rel="noreferrer noopener">10.1111/apa.14331</a>
Alone in a Crowd? Parents of Children with Rare Diseases’ Experiences of Navigating the Healthcare System
Family caregiving; Healthcare system; Navigation; Patient experience; Qualitative; Rare disease
A disorder is considered a rare disease if it affects 1 in 2000, hence, while independently unique, collectively, these conditions are quite common. Many rare diseases are diagnosed during childhood, and therefore parents become primary caregivers in addition to their parental role. Despite the prevalence of rare diseases among children, there has been little research focused on parents’ experiences of navigating the healthcare system, a gap we begin to address in this study. Guided by an interpretive description methodology, participants were recruited through online listservs and posting flyers at a pediatric hospital in Western Canada. Sixteen parents (15 mothers and 1 father) participated in in-depth, semi-structured interviews between April 2013 and March 2014. Data were analyzed inductively, generating the main study themes. Findings illuminated the challenges parents’ experienced on their child’s diagnostic journey—from seeking, to receiving, to adjusting to the rare disease diagnosis. Following diagnosis, gaps, and barriers to services resulted in parents pursuing services that could support their child’s unique care needs, which often resulted in out-of-pocket payments and changes to employment. Parents found peer support, both online and in person, to be an effective resource. This study illustrates the common challenges experienced by parents of children with rare diseases as they navigate the healthcare system. Parents’ role as “expert caregiver” was rarely acknowledged by healthcare providers, pointing to the need to foster more egalitarian relationships. As well, parents were burdened with the additional role of care coordinator, a role that could be filled formally by a healthcare provider. Lastly, peer support was a key resource in terms of information and emotional support for parents who often begin their journey feeling isolated and alone. Policies and programs are needed that validate the invisible care work of parents and ensure adequate formal supports are in place to mitigate potential sources of inequity for these families. Furthermore, genetic counselors can play a key role in ensuring parents’ informational needs are addressed at the time of diagnosis and in connecting families who share common experiences regardless of the rare disease diagnosis.
Baumbusch J; Mayer S; Sloan-Yip I
Journal of Genetic Counseling
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1007/s10897-018-0294-9" target="_blank" rel="noreferrer noopener">10.1007/s10897-018-0294-9</a>
Always a burden? Healthcare providers' perspectives on moral distress
Humans; Intensive Care Units; Stress; Attitude of Health Personnel; Female; Male; Adult; Qualitative Research; Intensive Care; Terminal Care/es [Ethics]; Terminal Care/px [Psychology]; Morals; Job Satisfaction; Psychological; Neonatal; Burnout; Terminal Care; Health Personnel/px [Psychology]; Professional/px [Psychology]; Neonatal/sn [Statistics & Numerical Data]; Neonatal/es [Ethics]; Burnout; Intensive Care; Stress; Neonatal/px [Psychology]; Professional; Professional/et [Etiology]; Professional/pc [Prevention & Control]; Psychological/et [Etiology]; Psychological/pc [Prevention & Control]
BACKGROUND: Current conceptualisations of moral distress largely portray a negative phenomenon that leads to burnout, reduced job satisfaction and poor patient care. OBJECTIVE: To explore clinical experiences, perspectives and perceptions of moral distress in neonatology. DESIGN: An anonymous questionnaire was distributed to medical and nursing providers within two tertiary level neonatal intensive care units (NICUs)-one surgical and one perinatal-seeking their understanding of the term and their experience of it. Open-ended questions were analysed using qualitative methodology. RESULTS: A total of 345 healthcare providers from two NICUs participated (80% response rate): 286 nurses and 59 medical providers. Moral distress was correctly identified as constrained moral judgement resulting in distress by 93% of participants. However, in practice the term moral distress was also used as an umbrella term to articulate different forms of distress. Moral distress was experienced by 72% of providers at least once a month. Yet despite the negative sequelae of moral distress, few (8% medical, 21% nursing providers) thought that moral distress should be eliminated from the NICU. Open-ended responses revealed that while interventions were desired to decrease the negative impacts of moral distress, moral distress was also viewed as an essential component of the caring profession that prompts robust discussion and acts as an impetus for medical decision-making. CONCLUSIONS: Moral distress remains prevalent within NICUs. While the harmful aspects of moral distress need to be mitigated, moral distress may have a positive role in advocating for and promoting the interests of the neonatal population.
Prentice TM; Gillam L; Davis PG; Janvier A
Archives of Disease in Childhood Fetal & Neonatal Edition
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here.
<a href="http://doi.org/10.1136/archdischild-2017-313539" target="_blank" rel="noreferrer noopener">10.1136/archdischild-2017-313539</a>
An economic examination of private insurance claims among adolescents and young adults who were enrolled in hospice during the last year of life
adolescent; retrospective study; hospital patient; health care utilization; human; article; female; male; adult; young adult; emergency ward; primary medical care; hospice care; length of stay; preliminary data; private health insurance; hospital service
Purpose: The purpose of this study was to generate baseline data on the health characteristics, health care utilization, and health care spending among privately insured adolescents and young adults (AYA), who were enrolled in hospice care during their last year of life. Methods: A retrospective, nonexperimental design was used to collect and analyze longitudinal claims data from the Truven Health MarketScanTM database. The sample included AYA (aged 15-24 years) who utilized hospice during their last year of life. Results: Totally, 17,408 AYA were included in this analysis. Mean hospice length of stay (LOS) was low overall, but there was a statistically significant difference in hospice LOS in ages 15-19 years (mean 3.56, SD 15.17 days) compared with those aged 20-24 years (mean 2.26, SD 8.24; P<0.001 days). More than a third (37%) of the AYAs used the emergency department during the last year of life and 83% sought care from a primary care visit. However, only 6% of the sample who were hospice enrollees used frequent inpatient hospital services. Conclusions: This study provides preliminary data for private insurance expenditures and clinical utilization for AYA who were enrolled in hospice. This analysis also provides initial evidence to suggest extremely short hospice LOS for AYAs prior to the end of life and represents an area of future research need.
Keim-Malpass J; Cohrs AC; Lindley LC; Leslie DL
Adolescent Health, Medicine and Therapeutics
2018
<a href="http://doi.org/%2010.2147/AHMT.S168501" target="_blank" rel="noreferrer noopener">10.2147/AHMT.S168501</a>
An interdisciplinary care model to establishing palliative care for children and adolescents with cancer
Taiwan; hospice; adolescent; pain; terminal care; oncology ward; education; palliative therapy; dyspnea; social worker; cancer patient; satisfaction; childhood cancer; case study; constipation; fatigue; health care quality; conference abstract; human; child; cancer model; counseling
Background/Objectives: Palliative care for Pediatric cancer patients and their families includes the relief of symptom and improvement of quality of life at any and all stages of disease. There care are most effectively provided by an interdisciplinary team. The purpose of this study was to develop an interdisciplinary care model to establishing palliative care into end of life care for children and adolescents with cancer. Design/Methods: The setting of this study was about a 24-bed Pediatric Oncology ward in Taiwan from November 2015 to July 2017. We use "satisfaction with care at the end of life" to measure medical members satisfaction and the instruments was based on literature review. We worked out those methods:(1) Symptom management: scheduled education for symptom control and care of the end of life of patient, such as fatigue, pain, constipation, or dyspnea.(2.) To develop an interdisciplinary care model: we implemented case analysis of the end of life of patient and redesigned a new counseling mechanism. (3) To design implement for age-appropriate: child life specialists are required to set and collected age-appropriate toy from social worker. Results: After our study, It have three aspects for satisfaction score: (1)"recognition of the problem by the medical team" were increased from 5.3 points to 8.1 points; (2)" an interdisciplinary care" were increased from 6.3 points to 9.1 points; (3)" age-appropriate implement " were increased from 5.8 points to 9.7 points. Additional benefits for the rate of hospice-palliative coverage, at the end of life in children and adolescents with cancer, were increased from 68% (2013/1/1~2014/12/31) to 100% (2016/1/1~2017/12/31). Conclusions: We found that children and adolescents who died of cancer experienced substantial suffering in the last month of life. Based on our results, we established an interdisciplinary care model that it is most effectively and healthcare quality of palliative care can be improved.
Lin FR; Hsu PY
Pediatric Blood and Cancer
2018
<a href="http://doi.org/%2010.1002/pbc.27455" target="_blank" rel="noreferrer noopener">10.1002/pbc.27455</a>
Anticipating death in children and adults with childhood onset severe central nervous system impairment: A case series review
adult
Objectives * Discuss problems due to severe central nervous system impairment that can remain intractable to treatment options. * Define tipping points that can prompt anticipatory discussions, including suggested recommendations that best meet goals. * Utilize language strategies that prepare families when prognosis is not possible. Little is written about trajectories and features that precede death in those with childhood onset severe central nervous system (CNS) impairment. This session will cover this topic through a review of deaths at a long-term care facility for children and young adults with severe neurological impairment and associated complex medical care needs. Of the more than 30 deaths, the majority (70%) were anticipated and guided by goals of care. Circumstances that prompted discussions included: problems that can be attributed to the CNS and remained intractable to various interventions, including seizures, recurrent intestinal pseudo-obstruction (hypothalamus and medulla), pain (thalamus), agitation (loss of CNS inhibition), and edema (medulla); increasing symptom burden; and gradual changes in alertness and ability to participate in activities. Details that preceded unexpected deaths will also be reviewed, including several with acute ileus who died following transfer to a hospital. Details will include: the length of time from the redirection of care plans until death, symptom management at the end-of-life, results of tests, prolonged survival following discontinuation of mechanical ventilation, changes in medical nutrition and hydration, and differences in planned vs unexpected deaths. Outcomes in those who survived using the same noninvasive management strategies will be included given the lack of prognostic ability, a time when parents were prepared for their child's potential death, and how parents responded before and after this experience. This is an important session given the lack of prognostic information, placing such individuals at significant risk for invasive testing and interventions, including surgery, at the end of life. Consideration of testable and "fixable" problems versus problems that can be due to the CNS without confirmatory tests will be discussed. This information will be used to outline "tipping points" that can prompt anticipatory discussions with parents and guardians, with suggested language offered.
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Hauer J; Clark C; Jarek H
Journal of Pain and Symptom Management
2018
<a href="http://doi.org/10.1016/j.jpainsymman.2017.12.151" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2017.12.151</a>
Are pediatric patients just short adults? most commonly prescribed drugs for pediatric hospice patients
hospice patient;pediatric patient;acid;adult;cancer patient;central nervous system cancer;chi square test;Child;conference abstract;constipation;controlled study;corticosteroid;death;diagnosis;diazepam;diphenhydramine;drug formulation;drug therapy;dyspnea;Female;genetic disorder;haloperidol;hospice care;human;hyoscyamine;institutional review;laxative;Length of Stay;levetiracetam;lorazepam;macrogol;major clinical study;metoclopramide;morphine;nausea;ondansetron;opiate;pain;paracetamol;patient information;practice guideline;preschool child;prochlorperazine;retrospective study;salbutamol;seizure;unclassified drug;vitamin
Purpose According to the most recently published data from National Hospice and Palliative Care Organization, approximately 78% of hospice providers in the United States serve pediatric patients, and the majority of these serve 1-10 patients per year. As with adult patients, palliative care for children focuses on holistic care, including the alleviation of physical, psychosocial, and spiritual suffering. Medications are used in hospice patients to palliate physical symptoms of terminal illness, including pain, dyspnea, nausea, and fatigue. The purpose of this study was to characterize the most commonly prescribed medications and medication classes in a population of pediatric hospice patients. Methods We conducted a retrospective review of a patient information database compiled by a national hospice organization. The database contained demographic information, as well as information on drug name, dosage, formulation, and strength. Medications were also characterized by pharmacological class. We compared proportions of the most commonly prescribed pharmacological classes among the three most common admitting diagnoses: cancer, central nervous system disorders, and genetic disorders. We used chi-square test or Fisher's exact test to detect any associations between admitting diagnosis and drug class. The institutional review board at the University of Maryland determined that this study was not human subjects research. Results Of 177 patients in the database, 116 patients were included in the study; these patients were admitted to hospice on or after January 1, 2011 and discharged by death on or before December 31, 2016. Sixty-one patients who were discharged prior to death were excluded. The average age of patients at admission was 6 years old (SD = 6.1) and 63% of patients were female. The median length of stay was 14.5 days (range: 0-411 days). A total of 3 017 medication orders were evaluated. Medication classes used for symptom management were most commonly prescribed. Six of the 10 most commonly prescribed drugs (morphine, lorazepam, acetaminophen, hyoscyamine, prochlorperazine, and haloperidol) were all included in the symptom management medication kits provided to most patients at admission. Other drugs prescribed for over 20% of patients included metoclopramide, diphenhydramine, albuterol, altropine, ondansetron, diazepam, polyethylene glycol, levetiracetam. Opioid analgesics, anxiolytics, anticholinergics, and antiemetics were prescribed to over 50% of patients at some point during admission. Other frequently prescribed medication classes non-opioid anageiscs, anticonvulsants, antiinfectives, laxatives, corticosteroids, acid reducers, antipsychotics, and vitamins/supplements. Of the 20 most commonly prescribed drug classes, patients with cancer were significantly more likely than those with CNS disorders or genetic disorders to be prescribed anticholinergics (p = 0.03), antiemetics (p < 0.0001), non-opioid analgesics (p = 0.003), laxatives (p = 0.003), corticosteroids (p = 0.0004), antihistamines (p = 0.01), acid reducers (p = 0.03), and antipsychotics (p < 0.0001). Conclusions Medications commonly prescribed for children receiving hospice care include those intended to treat symptoms including pain, dyspnea, nausea, seizures, and constipation. A general understanding of medications used in hospice care may be helpful in the development of educational materials, medications guidelines and protocols, and questions for future research.
Sera L;Morgan J;McPherson ML
Postgraduate Medicine
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1080/00325481.2018.1512253" target="_blank" rel="noreferrer noopener">10.1080/00325481.2018.1512253</a>
Aspects and intensity of pediatric palliative case management provided by a hospital-based case management team: A comparative study between children with malignant and nonmalignant disease
2018; Case Management; Child; end-of-life care; Hospitals; Only Child; Palliative Care; palliative care team; Pediatrics; retrospective studies; Teams
Objectives: Anticipating case management is considered crucial in pediatric palliative care. In 2012, our children�s university hospital initiated a specialized pediatric palliative care team (PPCT) to deliver inbound and outbound case management for children with life-shortening disease. The aim of this report is to gain insight in the first 9 months of this PPCT. Methods: Aspects of care during the first 9 months of the PPCT are presented, and comparison is made between patients with malignant disease (MD) and nonmalignant disease (NMD) in a retrospective study design. Insight in the aspects of care of all patients with a life-shortening disease was retrieved from web-based files and the hour registrations from the PPCT. Results: Forty-three children were supported by the PPCT during the first 9 months: 22 with MD with a median of 50 (1-267) days and 29 minutes (4-615) of case management per patient per day and 21 patients with NMD with a median of 79.5 (5-211) days and 16 minutes of case management per day (6-64). Our data show significantly more interprofessional contacts for patients with MD and more in-hospital contacts for patients with NMD. The median number of admission days per patient was 11 (0-22) for MD (44% for anticancer therapy) and 44 (0-303) for NMD (36% for infectious diseases). Significance of Results: This overview of aspects of pediatric palliative case management shows shorter but more intensive case management for MD in comparison with NMD. This insight in palliative case management guides the design of a PPCT. (PsycINFO Database Record (c) 2017 APA, all rights reserved)
Jagt-van Kampen CT; Colenbrander Derk A; Bosman DK; Grootenhuis MA; Kars Marijke C; Schouten-van Meeteren; Antoinette YN
American Journal Of Hospice & Palliative Medicine
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1177/1049909117695068" target="_blank" rel="noreferrer">10.1177/1049909117695068</a>
Assessing Ethics Knowledge: Development of a Test of Ethics Knowledge in Neonatology
Decision Making; Male; Surveys and Questionnaires; Humans; Adult; Female; medical education; Internship and Residency; medical ethics; assessment; milestones; professionalism; Ethics Medical/education; Neonatology/education; Psychometrics/education
OBJECTIVE: To develop and validate the Test of Ethics Knowledge in Neonatology (TEK-Neo) with good internal consistency reliability, item performance, and construct validity that reliably assesses interprofessional staff and trainee knowledge of neonatal ethics. STUDY DESIGN: We adapted a published test of ethics knowledge for use in neonatology. The novel instrument had 46 true/false questions distributed among 7 domains of neonatal ethics: ethical principles, professionalism, genetic testing, beginning of life/viability, end of life, informed permission/decision making, and research ethics. Content and correct answers were derived from published statements and guidelines. We administered the voluntary, anonymous test via e-mailed link to 103 participants, including medical students, neonatology fellows, neonatologists, neonatology nurses, and pediatric ethicists. After item reduction, we examined psychometric properties of the resulting 36-item test and assessed overall sample performance. RESULTS: The overall response rate was 27% (103 of 380). The test demonstrated good internal reliability (Cronbach alpha = 0.66), with a mean score of 28.5 +/- 3.4 out of the maximum 36. Participants with formal ethics training performed better than those without (30.3 +/- 2.9 vs 28.1 +/- 3.5; P = .01). Performance improved significantly with higher levels of medical/ethical training among the 5 groups: medical students, 25.9 +/- 3.7; neonatal nurses/practitioners, 27.7 +/- 2.7; neonatologists, 28.8 +/- 3.7; neonatology fellows, 29.8 +/- 2.9; and clinical ethicists, 33.0 +/- 1.9 (P < .0001). CONCLUSIONS: The TEK-Neo reliably assesses knowledge of neonatal ethics among interprofessional staff and trainees in neonatology. This novel tool discriminates between learners with different levels of expertise and can be used interprofessionally to assess individual and group performance, track milestone progression, and address curricular gaps in neonatal ethics.
Cummings CL; Geis GM; Feldman HA; Berson ER; Kesselheim J C
Journal of Pediatrics
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.jpeds.2018.04.004" target="_blank" rel="noreferrer noopener">10.1016/j.jpeds.2018.04.004</a>
Assessing the impact of caring for a child with Dravet syndrome: Results of a caregiver survey
Caregivers; Child; Child Care; Only Child; Dravet syndrome; child; Caregiver burden; EuroQoL 5D-5L; Oberst Caregiving Burden Scale; Supportive services; Epilepsies; Myoclonic
OBJECTIVE: The objective of this study was to describe and quantify the impact of caring for a child with Dravet syndrome (DS) on caregivers. METHODS: We surveyed DS caregivers at a single institution with a large population of patient with DS. Survey domains included time spent/difficulty performing caregiving tasks (Oberst Caregiving Burden Scale, OCBS); caregiver health-related quality of life (EuroQoL 5D-5L, EQ-5D); and work/activity impairment (Work Productivity and Activity Impairment questionnaire, WPAI). Modified National Health Interview Survey (NHIS) questions were included to assess logistical challenges associated with coordinating medical care. RESULTS: Thirty-four primary caregivers responded, and 30/34 respondents completed the survey. From OCBS, providing transportation, personal care, and additional household tasks required the greatest caregiver time commitment; arranging for child care, communication, and managing behavioral problems presented the greatest difficulty. EuroQoL 5D-5L domains with the greatest impact on caregivers (0=none, 5=unable/extreme) were anxiety/depression (70% of respondents>/=slight problems, 34%>/=moderate) and discomfort/pain (57% of respondents>/=slight problems, 23%>/=moderate). The mean EQ-5D general health visual analogue scale (VAS) score (0=death; 100=perfect health) was 67 (range, 11-94). Respondents who scored <65 were two- to fourfold more likely to report >/=moderate time spent and difficulty managing child behavior problems and assisting with walking, suggesting that children with DS with high degrees of motor or neurodevelopmental problems have an especially high impact on caregiver health. On the WPAI, 26% of caregivers missed >1day of work in the previous week, with 43% reporting substantial impact (>/=6, scale=1-10) on work productivity; 65% reported switching jobs, quitting jobs, or losing a job due to caregiving responsibilities. National Health Interview Survey responses indicated logistical burdens beyond the home; 50% of caregivers made >/=10 outpatient visits in the past year with their child with DS. CONCLUSIONS: Caring for patients with DS exerts physical, emotional, and time burdens on caregivers. Supportive services for DS families are identified to highlight an unmet need for DS treatments.
Campbell JD; Whittington MD; Kim CH; VanderVeen GR; Knupp KG; Gammaitoni A
Epilepsy & Behavior
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1016/j.yebeh.2018.01.003" target="_blank" rel="noreferrer noopener">10.1016/j.yebeh.2018.01.003</a>
Associated Factors of Psychological Distress among Japanese NICU Nurses in Supporting Bereaved Families Who Have Lost Children
Adaptation Psychological; Male; Infant Newborn; Bereavement; Surveys and Questionnaires; Humans; Adult; Stress Psychological; Female; psychological distress; Intensive Care Neonatal; nurses; bereavement care; Intensive Care Units Neonatal; Nicu; children's deaths; Hospice Care/psychology; Neonatal Nursing/education; Nurses Neonatal/education/psychology; Pediatricians/psychology
PURPOSE: This study aimed (1) to examine the current status of psychological distress experienced by neonatal intensive care unit (NICU) nurses in supporting bereaved families, (2) to identify the factors associated with psychological distress, and (3) to understand the professional characteristics of nurses experiencing high psychological distress by comparing the study results with those of pediatricians. METHODS: We sent questionnaires to 64 NICUs. The psychological distress of nurses was classified into two groups based on the frequency of psychological distress experienced and analyzed using the chi2 test and Fisher's exact test. A multiple logistic regression analysis was used to investigate the factors related to psychological distress. RESULTS: Of the 384 nurse respondents, 190 (49.5%) reported having supported bereaved families, 169 of who were included in the analysis. A total of 123 nurses (72.8%) reported high levels of psychological distress. Our study revealed that the use of coping methods is associated with high psychological distress. The comparison with pediatricians revealed that nurses were significantly more likely to be female and had fewer years of working experience. Nurses were also significantly more likely to use coping methods and to experience high psychological distress. CONCLUSION: Clarifying the coping methods for psychological distress in supporting bereaved families may be necessary, and nurses need to identify appropriate coping methods. In nursing education, information on psychological distress related to children's deaths and bereavement care should be conveyed from the early stage and nurses must obtain preliminary knowledge. The creation of a bereavement follow-up system is recommended.
Kitao M; Setou N; Yamamoto A; Takada S
Kobe Journal of Medical Sciences
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Associations Between Pediatric Palliative Care Consultation and End-of-Life Preparation at an Academic Medical Center: A Retrospective EHR Analysis
Academic Medical Centers; Palliative Care; Referral and Consultation
OBJECTIVES: Our aim in this study was to understand usage patterns of pediatric palliative care (PPC) consultation and associations with end-of-life preparation among pediatric patients who are deceased. METHODS: We reviewed 233 pediatric mortalities. Data extraction from the electronic health record included determination of PPC consultation by using Current Procedural Terminology codes. Diagnoses were identified by International Classification of Disease codes and were classified into categories of life-threatening complex chronic conditions (LT-CCCs). Data analysis included Student's t test, Wilcoxon rank test, Fisher's exact test, chi(2) test, and multivariable logistic regression. RESULTS: The overall PPC consultation rate for pediatric patients who subsequently died was 24%. A PPC consultation for patients admitted to the pediatric ward and PICU was more likely than for patients cared for in the NICU (31% vs 12%, P < .01) and was more likely for those with an LT-CCC (40% vs 10%, P < .01), particularly malignancy (65% vs 35%, P < .01). Also noted were increased completion of Physician Orders for Life-Sustaining Treatment forms (8 vs 0, P < .01) and increased documentation of mental health disorders (60% vs 40%, P = .02). CONCLUSIONS: Our findings suggest that PPC consultation for patients in the pediatric ward and PICU is more likely among patients with a greater number of LT-CCCs, and is associated with increased Physician Orders for Life-Sustaining Treatment preparation and documentation of mental health disorders. Patients at risk to not receive PPC consultation are those with acute illness and patients in the NICU.
Stutz M; Kao RL; Huard L; Grotts J; Sanz J; Ross MK
Hospital Pediatrics
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1542/hpeds.2017-0016" target="_blank" rel="noreferrer noopener">10.1542/hpeds.2017-0016</a>
Attitudes of the four groups of population toward end-of-life care of their child: A nationwide survey
terminal care;adult;cancer patient;caregiver;Child;conference abstract;controlled study;Female;health care system;hospice;human;life sustaining treatment;lifespan;major clinical study;Male;multicenter study;palliative therapy;pediatric patient;physician;population group;questionnaire
Aims & Objectives: Preference for care in dying children is important for the quality of end-of-life care but little is known about attitudes of the relatives of the children toward the preference according to the expected life span. Methods We conducted a national survey about the preference for care in dying of pediatric patients in four participants groups. Results We analyzed nationwide questionnaires of total 4,154 participants; 928 physicians from the 12 hospitals and the Korean Medical Association, 1,241 general population, 979 adult cancer patients, and 1,006 family caregivers from 12 general hospitals. The preference for aggressive treatment or life-sustaining treatment (LST) decreased and the preference for hospice-palliative care (HPC) increased according to the decrease of expected life span in all the groups. The positive preference for aggressive treatment is significantly higher in the patients and family caregivers groups than in the physicians group. The preference for LST is significantly higher in the three groups compare to the physicians group 6. But the preference for HPC is significantly lower in these groups compare to the physicians group. Conclusions The preferences for aggressive treatment, LST and HPC have changed according to the decrease of expected life span, and were different among the population group. Communication program and health care systems to reduce the gap of the preferences between the general population, patients or family carefivers and physicians are needed.
Kim YS;Choi YH;Lee B;Park JD;Yun YH
Pediatric Critical Care Medicine
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1097/01.pcc.0000537853.70857.ca" target="_blank" rel="noreferrer noopener">10.1097/01.pcc.0000537853.70857.ca</a>
Attitudes, Beliefs, and Practices of Pediatric Palliative Care Physicians Regarding the Use of Methadone in Children with Advanced Cancer
Pediatrics; Pain Management; Methadone; Pediatric Palliative Care; Pediatric Oncology
CONTEXT: Methadone is a long-acting opioid known for its unique pharmacokinetic and pharmacodynamic properties. Most research on methadone in children is limited to its effect on the prolongation of the corrected QT (QTc) interval. OBJECTIVES: To better understand the attitudes, beliefs, and practices of pediatric palliative care physicians regarding the use of methadone in children with advanced cancer. METHODS: A survey was sent to The American Academy of Pediatrics Section of Hospice and Palliative Medicine LISTSERV(R). Information on demographics, dosing of methadone, and the use of electrocardiograms (ECGs) was collected. RESULTS: One-hundred and five respondents (91%) provide palliative care to children >/= 50% of the time, and a majority (81, 77%) prescribe methadone. Most (62, 77%) physicians were board-certified in Hospice and Palliative Medicine and most (39, 63%) certified via the direct pathway ("grandfathering"). Most physicians (57, 70%) do not use loading doses of methadone. Board-certified physicians trended towards decreasing methadone dose more (40% +/- 19%) than non-board-certified physicians (28%, +/-20%) when changing from the oral to intravenous route (p = 0.07). Respondents defined a QTc interval as "prolonged" (mean +/- SD) at 444 milliseconds (+/-68 milliseconds). The percentage of patients receiving a baseline ECG was 65% (+/-33%). The most common reason for not performing a baseline ECG was that the patient was on hospice (13, 36%). CONCLUSIONS: There are consistent practices, attitudes, and beliefs of pediatric palliative care providers with regards to methadone. More education is needed on the accurate value of a prolonged QTc interval.
Madden K; Liu D; Bruera E
Journal of Pain and Symptom Management
2018
<a href="http://doi.org/%2010.1016/j.jpainsymman.2018.11.009" target="_blank" rel="noreferrer noopener">10.1016/j.jpainsymman.2018.11.009</a>
Awareness of pediatric palliative care among health care workers
clinical competence; education; palliative therapy; pediatrics; attitude to health; child; health care personnel; human; psychology; questionnaire; Ukraine
Introduction: In order to develop such a relatively new type of medical care in Ukraine, as pediatric palliative care, first of all, qualified medical workers are needed. The aim: to assess the awareness of pediatric palliative care among healthcare workers providing medical services to children.Materials and methods: It was carried out a survey at health facilities of Ivano-Frankivsk region, which provided medical care for children. It was interviewed 578 healthcare workers, among them were generally practitioners - 131, primary care pediatricians - 52, pediatricians-specialists - 36, health care managers - 78, nurses - 281. The half of the respondents (57.2%) had work experience more than 20 years.Results: It was established that every fourth respondent (25.3%) did not know what is mean of pediatric palliative care. At the same time, the main object of its delivery was considered to be patients with cancer (71.5%), and not with incurable chronic diseases (54.8%). Only 59.7% of respondents knew that palliative care (PC) should begin with the diagnosis of an incurable disease, and not at the end of life, as well as half (52.6%) of them knew that the relatives of seriously ill children are object of PC. The majority of respondents recognized the lack of their knowledge of pediatric palliative care (85.8%). All answers differed depending on the position of respondents (p%#60;0.05). However, regardless of this, almost all respondents (94.5%) expressed their desire to receive proper knowledge of pediatric palliative care.Conclusion: It was established lack of knowledge on pediatric palliative care among medical workers served children. The majority of respondents recognized the lack and need of knowledge on pediatric palliative care. Overall level of knowledge among healthcare workers about palliative care was poor, and it is necessary to improve it.
Detsyk OZ; Zolotarova ZM; Stovban IV; Melnyk RM
Wiadomosci lekarskie
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here.
<a href="http://doi.org/https://europepmc.org/abstract/med/29783228" target="_blank" rel="noreferrer noopener">https://europepmc.org/abstract/med/29783228</a>
Barriers and facilitators to the implementation of a paediatric palliative care team
health care personnel; palliative therapy; Child; Only Child; Palliative Care; Pilot Projects; human experiment; major clinical study; pilot study; expectation; concrete; child; human; female; male; pediatrics; article; awareness; patient satisfaction; tertiary health care
Background: Over the last decade, paediatric palliative care teams (PPCTs) have been introduced to support children with life-limiting diseases and their families and to ensure continuity, coordination and quality of paediatric palliative care (PPC). However, implementing a PPCT into an organisation is a challenge. The objective of this study was to identify barriers and facilitators reported by healthcare professionals (HCPs) in primary, secondary or tertiary care for implementing a newly initiated multidisciplinary PPCT to bridge the gap between hospital and home. Methods: The Measurement Instrument for Determinants of Innovations (MIDI) was used to assess responses of 71 HCPs providing PPC to one or more of the 129 children included in a pilot study of a PPCT based at a university children's hospital. The MIDI (29 items) assessed barriers and facilitators to implementing the PPCT by using a 5-point scale (completely disagree to completely agree) and additional open-ended questions. Items to which >=20% of participants responded with 'totally disagree/disagree' and >=80% responded with 'agree/totally agree' were considered as barriers and facilitators, respectively. A general inductive approach was used for open-ended questions. Results: Reported barriers to implementing a PPCT were related to the HCP's own organisation (e.g., no working arrangements related to use of the intervention [PPCT] registered, other organisational changes such as merger going on). Reported facilitators were mainly related to the intervention (correctness, simplicity, observability and relevancy) and the user scale (positive outcome expectations, patient satisfaction) and only once to the organisation scale (information accessibility). Additionally, HCPs expressed the need for clarity about tasks of the PPCT and reported having made a transition from feeling threatened by the PPCT to satisfaction about the PPCT. Conclusion: Positive experiences with the PPCT are a major facilitator for implementing a PPCT. Tailored organisational strategies such as working arrangements by management, concrete information about the PPCT itself and the type of support provided by the PPCT should be clearly communicated to involved HCPs to increase awareness about benefits of the PPCT and ensure a successful implementation. New PPCTs need protection and resources in their initial year to develop into experienced and qualified PPCTs.
Verberne LM; Kars MC; Schepers SA; Schouten-Van Meeteren AYN; Grootenhuis MA; Van Delden JJM
BMC Palliative Care
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1186/s12904-018-0274-8" target="_blank" rel="noreferrer noopener">10.1186/s12904-018-0274-8</a>
Barriers to accessing palliative care for pediatric patients with cancer
Although many of the 16,000 children in the United States diagnosed who are with cancer each year could benefit from pediatric palliative care, these services remain underused. Evidence regarding the barriers impeding access to comprehensive palliative care is dispersed in the literature, and evidence specific to pediatric oncology remains particularly sparse. The purpose of the current review was to synthesize the existing literature regarding these barriers and the strategies offered to address them. The authors completed a literature search using the PubMed, Cumulative Index to Nursing and Allied Health Literature (CINAHL), and Web of Science databases. In total, 71 articles were reviewed. Barriers to accessing pediatric palliative care were categorized according to the 4 levels of a modified socioecological model (ie, barriers related to policy/payment, health systems, organizations, and individuals). Major themes identified at each level included: 1) the lack of consistent and adequate funding mechanisms at the policy/payment level, 2) the lack of pediatric palliative care programs and workforce at the health systems level, 3) difficulties integrating palliative care into existing pediatric oncology care models at the organizational level, and 4) the lack of knowledge about pediatric palliative care, discomfort with talking about death, and cultural differences between providers and patients and their families at the individual level. Recommendations to address each of the barriers identified in the literature are included. Cancer 2018;124:2278-88.
Haines ER; Frost AC; Kane HL; Rokoske FS
Cancer
2018
<a href="http://doi.org/%2010.1002/cncr.31265" target="_blank" rel="noreferrer noopener">10.1002/cncr.31265</a>
Barriers to research with children and young people with life-limiting conditions and their families: A survey of chief investigators' views, experiences and proposed solutions
human; child; female; male; major clinical study; conference abstract; patient referral; scientist; funding; intervention study; thinking; clinical research; embedding; publication; visibility
Background/aims: Undertaking research with children and young people (CYP) with life-limiting conditions (LLC) and life threatening illnesses (LTI) is challenging. Previous research has highlighted barriers, such as obtaining ethics approval and clinician gatekeeping, that delay research or result in studies not recruiting to target. This study aimed to provide more in-depth insight on the views, experiences and solutions of Chief Investigators (CIs) recruiting CYP with LLC and LTI and their families in the UK. Methods: We developed an online survey based on a scoping review of the literature and previous rapid survey. The new survey contained closed and open-ended questions and was divided into 3 sections: (1) the CI's most recent project; (2) the CI's overall experience of research with this population; (3) demographic information. Participants were 61 CIs conducting studies with CYP with LLC and LTI and families, identified from the UK NIHR Clinical Research Network Portfolio. Results: Chief investigators reported funding (51%) to be the biggest barrier to research with this population, followed by institutional factors (e.g. research and development approval) (11%) and clinician factors (e.g. gatekeeping) (9%). CIs suggested several generic solutions (e.g. having a well thought out question and methodology to improve chances of obtaining funding). Solutions that were particularly relevant included embedding researchers in clinical teams, involving CYP and families early on in the research process, meeting the specific needs of CYP and families and designing clear and age appropriate written information for CYP. Given the usually low number of eligible CYP, inclusion criteria should be broad and investigators should be aware of the complexity of approvals required for multi-centre studies. Researchers should invest in developing good relationships with clinicians to reduce gatekeeping and attempt to interest them in studies other than intervention trials, which are quite common in this population. Conclusions: The involvement of clinicians, CYP and families at the inception of studies should be considered a priority for research with CYP with LLC and LTI and families. Other potential strategies include increasing the visibility of research, embedding researchers in clinical teams, having clinician research champions, and acknowledging in peerreviewed manuscripts those clinicians who do recruit to studies.
Peake J; Beecham E; Oostendorp L; Hudson B; Stone P; Jones L; Lakhanpaul M; Bluebond-Langner M
Palliative Medicine
2018
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1177/0269216318769196" target="_blank" rel="noreferrer noopener">10.1177/0269216318769196</a>