Specialist palliative care service for children with life-threatening conditions in Japan: A nationwide survey of resources and utilization
cancer center; palliative therapy; solid malignant neoplasm; conference abstract; human; child; female; male; controlled study; adult; clinical article; questionnaire; Japan
Background/Objectives: To clarify the availability and utilization of specialist palliative care services among children with life-threatening conditions in Japan. Design/Methods: A questionnaire was administered to assess the availability of specialist palliative care services among children with life-threatening conditions. All 427 certified regional cancer centers having hospital-based adult palliative care teams, 15 certified children's cancer centers having Pediatric palliative care teams, and 368 medical institutions having a certified palliative care unit, were surveyed. Results: Fifteen percent of adult palliative care teams had experience providing palliative care to children with hematological cancer and 21% had experience with other cancers. More than 90% of Pediatric palliative care teams had experience providing palliative care to children with cancer. In contrast, only 2%-3% of adult palliative care teams and 15% of Pediatric palliative care teams had experience providing care for the non-cancer population. An estimated 12% of children with cancer in Japan used hospital-based palliative care teams in 2015. Eight children used a palliative care unit in 2015 and of those, 7 (88%) had a solid tumor. An estimated 1.3% of children with cancer who died in Japan used a palliative care unit in 2015. Conclusions: An estimated 12% of children with cancer in Japan used hospital-based palliative care teams and an estimated 1.3% of children with cancer who died in Japan used a palliative care unit in 2015.
Yotani N; Kizawa Y
Pediatric Blood and Cancer
2018
<a href="http://doi.org/10.1002/pbc.27455" target="_blank" rel="noreferrer noopener">10.1002/pbc.27455</a>
Development and Implementation of an End-of-Life Curriculum for Pediatric Residents
dying; palliative therapy; comfort; satisfaction; resident; human; article; child; terminal care; curriculum development
BACKGROUND: Caring for a child near the end of life (EOL) can be a stressful experience. Resident physicians are often the frontline providers responsible for managing symptoms, communicating difficult information, and pronouncing death, yet they often receive minimal education on EOL care. OBJECTIVE: To develop and implement an EOL curriculum and to study its impact on resident comfort and attitudes surrounding EOL care. DESIGN: Kern's 6-step approach to curriculum development was used as a framework for curriculum design and implementation. SETTING/PARTICIPANTS: Categorical and combined pediatric residents at a large quaternary care children's hospital were exposed to the curriculum. MEASUREMENTS: A cross-sectional survey was distributed pre- and postimplementation of the curriculum to evaluate its impact on resident comfort and attitudes surrounding EOL care. RESULTS: One-hundred twenty-six (49%) of 258 residents completed the preimplementation survey, and 65 (32%) of 201 residents completed the postimplementation survey. Over 80% of residents reported caring for a dying patient, yet less than half the residents reported receiving prior education on EOL care. Following curriculum implementation, the percentage of residents dissatisfied with their EOL education fell from 36% to 14%, while the percentage of residents satisfied with their education increased from 14% to 29%. The postimplementation survey identified that resident comfort with communication-based topics improved, and they sought additional training in symptom management. CONCLUSIONS: The implementation of a longitudinal targeted multimodal EOL curriculum improved resident satisfaction with EOL education and highlighted the need for additional EOL education.
Wilson PM; Herbst L A; Gonzalez-Del-Rey J
The American journal of hospice & palliative care
2018
<a href="http://doi.org/10.1177/1049909118786870" target="_blank" rel="noreferrer noopener">10.1177/1049909118786870</a>
Using the Young Children's Participation and Environment Measure (YC-PEM) to Describe Young Children's Participation and Relationship to Disability and Complexity
Minimal research exists on the participation of young children who are five years and younger. The purpose of this study is to describe the participation of young children who use a large children's treatment centre in Ontario, Canada in relation to primary diagnosis and complexity (cumulative number of functional concerns). One hundred and seventy parent responses described environmental supports and barriers, participation frequency and level of involvement in home, daycare/preschool, and community settings as well as parent's desired change in activities using the Young Children's Participation and Environment Measure (YC-PEM). Spearman's correlations explored the relationship between participation and complexity (using the About My Child measure), and the Mann-Whitney test explored relationships between participation and child's primary diagnosis. Participation frequency and involvement scores were highest in the home setting followed by the daycare/preschool setting then the community setting. Participation involvement and complexity correlations showed stronger negative associations than participation frequency and complexity. Young children's participation scores were significantly higher among children with communication disorders in comparison to children with motor/cognitive disabilities in the frequency home setting and involvement in all settings. This study supports that a stronger relationship exists between complexity and involvement in comparison to frequency, and young children with motor/cognitive disorders have lower participation scores than young children with communication disorders.
Williams U; Law M; Hanna S; Gorter JW
Journal of Developmental and Physical Disabilities
2018
<a href="http://doi.org/10.1007/s10882-018-9637-6" target="_blank" rel="noreferrer noopener">10.1007/s10882-018-9637-6</a>
Modes of Death Within a Children's Hospital
Human; Length of Stay; Child; Hospitalization; Intensive Care Units Pediatric; Treatment Failure; Referral and Consultation; Palliative Care; Hospitals Pediatric; Intensive Care Units Neonatal; Resuscitation; Confidence Intervals; Odds Ratio; Qualitative Studies; Descriptive Statistics; Race Factors; Retrospective Design; Whites; Blacks; Hospital Mortality -- In Infancy and Childhood; Multiple Logistic Regression
BACKGROUND: Knowledge about how children die in pediatric hospitals is limited, and this hinders improvement in hospital-based end-of-life care. METHODS: We conducted a retrospective chart review of all the patients who died in a children's hospital between July 2011 and June 2014, collecting demographic and diagnostic information, hospital length of stay, location of death, and palliative care consultation. A qualitative review of provider notes and resuscitation records was used to create 5 mutually exclusive modes of death, which were then assigned to each patient. Analysis included the calculation of descriptive statistics and multinomial logistic regression modeling. RESULTS: We identified 579 patients who were deceased; 61% were <1 year of age. The ICU was the most common location of death (NICU 29.7%; PICU 27.8%; cardiac ICU 16.6%). Among the 5 modes of death, the most common was the withdrawal of life-sustaining technology (40.2%), followed by nonescalation (25.6%), failed resuscitation (22.8%), code then withdrawal (6.0%), and death by neurologic criteria (5.3%). After adjustment, patients who received a palliative care consultation were less likely to experience a code death (odds ratio 0.31; 95% confidence interval 0.13--0.75), although African American patients were more likely than white patients to experience a code death (odds ratio 2.46; 95% confidence interval 1.05--5.73), mostly because of code events occurring in the first 24 hours of hospitalization. CONCLUSIONS: Most deaths in a children's hospital occur in ICUs after the withdrawal of life-sustaining technology. Race and palliative care involvement may influence the manner of a child's death.
Trowbridge A; Walter JK; McConathey E; Morrison W; Feudtner C
Pediatrics
2018
<a href="http://doi.org/10.1542/peds.2017-4182" target="_blank" rel="noreferrer noopener">10.1542/peds.2017-4182</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>
Care of the Bereaved Mother
Quality of Health Care; Human; Interviews; Nurse-Patient Relations; Parental Attitudes; Support Psychosocial; Mothers -- Psychosocial Factors; Bereavement -- Evaluation; Grief -- Evaluation; Neonatal Intensive Care Nursing -- Education; Nursing Role; Patient Centered Care; Perinatal Death -- Psychosocial Factors; Support Groups
Purpose: Caring for the bereaved mother can be a challenging undertaking for healthcare professionals who unless have suffered a similar loss, can find it difficult to relate with bereaved parents. The purpose of this DNP project is to research grief and bereavement to better understand the parental bereavement experience and to develop an education lesson for MBU nurses caring for bereaved patients. It is essential to provide nurses with insight into the bereavement experience of parents who have suffered the loss of a child, so they can provide support that validates the parents' grief and helps facilitate spiritual, emotional, or cultural rituals. Appropriate interventions can improve quality of care and promote healing. Method: The project was implemented in collaboration with the NICU nursery, the NICU nursing staff, and the parents' bereavement support group coordinator. The goal was to research the bereavement experience of the parents, but more specifically the mother, through evidencebased research, interviews with NICU nurses of their interaction with bereaved parents, review of the existing bereavement protocol in the hospital, and observing a parents' bereavement support group to hear firsthand accounts of parents' experiences and perceptions of their nursing care by healthcare professionals. This gathered data was then structured into an education lesson for the nurses of the MBU. Findings: The education lesson was positively reviewed by the stakeholders. Their feedback stated the information was relevant and brought awareness and insight for nurses caring for these vulnerable patients during a difficult time. The coordinator of the parents' bereavement support group suggested the lesson would be beneficial for newly hired nurses during orientation. Clinical Relevance: Through education, nurses gain knowledge and an understanding of what their role is in the bereavement process of the mother who has suffered an unexpected perinatal loss. Learning to foster a caring and trusting relationship with patients creates a safe environment and forms a partnership with patients, which thus results in appropriate interventions that meet the specific needs of the mother. This also facilitates the development of an individualized plan of care that provides support, comfort and guidance through the bereavement process. Guiding parents through the bereavement process is an essential component of care that contributes to normal progression through the stages of grief and promotes wellbeing.
Rocio GI
Care Of The Bereaved Mother
2018
Early integrated palliative approach for idiopathic pulmonary fibrosis: A narrative study of bereaved caregivers' experiences
Hospital Mortality; Bereavement; Human; Communication; Anxiety; Stress Psychological; Palliative Care; Canada; Attitude to Death; Emotions; Adult Children; Life Change Events; Interviews; Interpersonal Relations; Memory; Collaboration; Narratives; Home Health Care; Purposive Sample; Support Psychosocial; Life Experiences; Patient Care Plans; Quality of Life; Content Analysis; Thematic Analysis; Advance Care Planning; Patient Attitudes; Accountability; Caregiver Attitudes; Health Facilities -- Canada; Idiopathic Pulmonary Fibrosis -- Prognosis; Idiopathic Pulmonary Fibrosis -- Therapy -- Canada; Pulmonologists; Spouses
Background: Idiopathic pulmonary fibrosis has an uncertain and rapid trajectory after diagnosis. Palliative care is rarely utilized, although both patients and caregivers experience a distressingly high symptom burden. Most patients die in hospital. Aim: The purpose of this study was to explore bereaved caregivers' experiences and perceptions of an early integrated palliative approach implemented at a Multidisciplinary Interstitial Lung Disease Clinic. Design: A narrative approach was used, with thematic and content analysis of open-ended interviews. Setting/participants: The clinic is located in a large western Canadian city. Caregivers of deceased patients were recruited through purposive sampling. The eight participants were either spouses or adult children. Results: Five major themes were identified: Having a Terminal Disease; Planning Goals and Wishes for Care; Living Life and Creating Memories; Feeling Strain and Responsibility; and Nearing the End. Caregivers had little understanding of prognosis prior to advance care planning conversations at the clinic. Advance care planning conversations enabled caregivers to know and support patients' goals and wishes. Caregivers described feeling informed, prepared, and supported when death was near. They expressed neither distress nor anxiety related to patients' symptoms or strain of relationships. Conclusion: Collaboration and close communication among caregivers, respirologists, and home care enabled effective symptom management and out of hospital deaths. Patients and caregivers had opportunities to enjoy events, create memories, determine preferences, and make plans. Further research on an early integrated palliative approach in Idiopathic Pulmonary Fibrosis is warranted related to quality of life, experience with death and dying, and caregiver bereavement.
Pooler C; Richman-Eisenstat J; Kalluri M
Palliative Medicine
2018
<a href="http://doi.org/10.1177/0269216318789025" target="_blank" rel="noreferrer noopener">10.1177/0269216318789025</a>
Palliative care professional's perceptions of barriers and challenges to accessing children's hospice and palliative care services in South East London: A preliminary study
hospice; Pediatrics; Palliative Care; palliative care; Health Personnel; Health Personnel Attitudes; Hospice; Treatment Barriers
Objectives: Several barriers have been identified as preventing or delaying access to children's palliative care services. The aim of this study is to further explore such barriers from palliative care professionals' perspective from two London boroughs. Methods: Qualitative-five children's palliative care professionals' perceptions were obtained from semi-structured interviews. Results: Three themes emerged: availability and adequacy of child palliative care (e.g., unreliability of services), obstacles to accessing palliative care (e.g., logistical challenges), and cultural values and family priorities. Conclusion: These findings contribute to the equal opportunities dialogue in this sector and the need for future research to address the challenges identified. (PsycINFO Database Record (c) 2018 APA, all rights reserved)
Pentaris P; Papadatou D; Jones A; Hosang GM
Death Studies
2018
<a href="http://doi.org/10.1080/07481187.2018.1430081" target="_blank" rel="noreferrer noopener">10.1080/07481187.2018.1430081</a>
Managing Ambiguity: Nurses Caring for the Mother of a Stillborn Baby
Human; Grief; Interviews; Grounded Theory; Perinatal Death; Audiorecording; Constant Comparative Method; Life Experiences -- Evaluation; Obstetric Nursing
Purpose: The aim of this study was to describe and conceptualize the experiences and processes involved when labor and delivery nurses provide care to women experiencing a stillbirth. Background: The care of a woman experiencing a stillbirth is an important topic that requires attention, however, there is a paucity of literature on the specifics of a nurse's experience as she or he cares for a grieving mother. These experiences may shed light on gaps in care that may exist as well as gaps in the resources, education and support needed to appropriately prepare nurses for providing care to a mother at such a difficult and vulnerable time. Stillbirth is increasingly referred to in the literature as a traumatic death, unexpected and unplanned, resulting in post-traumatic stress responses. Understanding what the bedside nurse does, thinks, and feels during these moments of traumatic bereavement will contribute to a greater understanding of the nurse's experience of providing care to a patient. Method: This study used a grounded theory approach. Data were collected via in-depth interviews with 20 labor and delivery nurses. Each interview session was recorded, transcribed verbatim, and analyzed using the constant comparative method of analysis. Results: Based on the inductive method of grounded theory and a thorough comparative analysis of the data, the theory Managing Ambiguity emerged as the basic social process of how nurses struggle to care for a mother whose baby was stillborn. This theoretical underpinning summed up the substance of what was occurring when nurses cared from a mother experiencing a stillbirth and was characterized in three different categories by labor and delivery nurses as Experiencing a spectrum of emotions, Managing the ambiguous patient, and Managing institutional ambiguity. These factors contributed to the overall ambiguity the nurse had to manage when providing care for the patient whose baby was stillborn and became the three main categories of the overall theory. Conclusions: This theory of Managing Ambiguity provided a perspective on the experiences, behaviors, and social processes involved in caring for a woman delivering a stillborn baby. This theory also provided insights into how the interactions between the nurse and herself, the nurse and the patient, and the nurse and her environment impacted the process and the meaning of the event. The importance of this study is the resulting understanding of factors that impede and enhance the process of providing care to a mother whose baby was stillborn. Feelings of uncertainty, ambiguity, and discomfort must be addressed at the nursing education and nursing leadership levels.
Nurse NJ
Managing Ambiguity: Nurses Caring For The Mother Of A Stillborn Baby
2018
Children With Intellectual Disability and Hospice Utilization: The Moderating Effect of Residential Care
United States; hospice care; California; terminal care; hospital admission; organization and management; long term care; human; child; female; male; statistics and numerical data; utilization; intellectual impairment/th [Therapy]; medicaid; patient preference
BACKGROUND: Children with intellectual disability commonly lack access to pediatric hospice care services. Residential care may be a critical component in providing access to hospice care for children with intellectual disability. OBJECTIVE/HYPOTHESIS: This research tested whether residential care intensifies the relationship between intellectual disability and hospice utilization (ie, hospice enrollment, hospice length of stay), while controlling for demographic characteristics. METHODS: Multivariate regression analyses were conducted using 2008 to 2010 California Medicaid claims data. RESULTS: The odds of children with intellectual disability in residential care enrolling in hospice care were 3 times higher than their counterparts in their last year of life, when controlling for demographics. Residential care promoted hospice enrollment among children with intellectual disability. The interaction between intellectual disability and residential care was not related to hospice length of stay. Residential care did not attenuate or intensify the relationship between intellectual disability and hospice length of stay. CONCLUSIONS: The findings highlight the important role of residential care in facilitating hospice enrollment for children with intellectual disability. More research is needed to understand the capability of residential care staff to identify children with intellectual disability earlier in their end-of-life trajectory and initiate longer hospice length of stays.
Lindley LC
The American journal of hospice & palliative care
2018
<a href="http://doi.org/10.1177/1049909117743181" target="_blank" rel="noreferrer noopener">10.1177/1049909117743181</a>
Facilitating transition from children's to adult services for young adults with life-limiting conditions (TASYL): Programme theory developed from a mixed methods realist evaluation
decision making; staff training; palliative therapy; human experiment; skill; childhood; human; article; child; female; male; adult; interview; clinical article; young adult; theoretical study; transition to adult care; drawing
DESIGN: A realist evaluation using mixed methods with four phases of data collection in the island of Ireland. Phase one: a questionnaire survey of statutory and non-statutory organisations providing health, social and educational services to young adults making the transition from children's to adult services in Northern Ireland and one Health Services Executive area in the Republic of Ireland. Phase two: interviews with eight young adults. Phase three: two focus groups with a total of ten parents/carers. Phase four: interviews with 17 service providers. Data were analysed seeking to explain the impact of services and interventions, and to identify organisational and human factors thought to influence the quality, safety and continuity of care. RESULTS: Eight interventions were identified as facilitating transition from children's to adult services. The inter-relationships between these interventions supported two complementary models for successful transition. One focused on fostering a sense of confidence among adult service providers to manage the complex care of the young adult, and empowering providers to make the necessary preparations in terms of facilities and staff training. The other focused on the young adults, with service providers collaborating to develop an autonomous young adult, whilst actively involving parents/carers. These models interact in that a knowledgeable, confident young adult who is growing in decision-making abilities is best placed to take advantage of services - but only if those services are properly resourced and run by staff with appropriate skills. No single intervention or stakeholder group can guarantee a successful transition. Rather, service providers could work with young adults and their parents/carers to consider desired outcomes, and the range of interventions, in light of the organisational and human resources available in their context. This would allow them to supplement the organisational context where necessary and select interventions that are more likely to deliver outcomes in that context. BACKGROUND: Improvements in care and treatment have led to more young adults with life-limiting conditions living beyond childhood, necessitating a transition from children's to adult services. Given the lack of evidence on interventions to promote transition, it is important that those creating and evaluating interventions develop a theoretical understanding of how such complex interventions may work. OBJECTIVES: To develop theory about the interventions, and organisational and human factors that help or hinder a successful transition from children's to adult services, drawing on the experience, knowledge, and insights of young adults with life-limiting conditions, their parents/carers, and service providers.
Kerr H; Price J; Nicholl H; O'Halloran P
International journal of nursing studies
2018
<a href="http://doi.org/10.1016/j.ijnurstu.2018.06.015" target="_blank" rel="noreferrer noopener">10.1016/j.ijnurstu.2018.06.015</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>
Provision of Palliative and Hospice Care to Children in the Community: A Population Study of Hospice Nurses
pediatric; hospice; palliative care; training; community
Context Approximately 500,000 children in the United States suffer from life-limiting illnesses each year, many of whom are hospice eligible each year. Few hospice agencies, however, offer formal pediatric programs. Objective To determine the levels of experience and comfort of hospice nurses who provide care to children and families in the community. Methods A cross-sectional survey was developed to assess hospice nurse experience/comfort across the domains of symptom management, end-of-life care, goals of care, family-centered care, and bereavement. The survey was pilot-tested and distributed to hospice nurses across a tristate region. Results A total of 551 respondents across 71 hospices completed surveys. The majority of nurses reported no training in pediatric palliative or hospice care (89.8%), with approximately half reporting < 5 years of hospice experience (53.7%) and no pediatric hospice experience (49.4%). Those with pediatric hospice experience reported limited opportunities to maintain or build their skills, with the majority providing care to children several times a year or less (85.7%). Nurses reported feeling somewhat or very uncomfortable providing services to children during the illness trajectory and at the end of life across all domains. Conclusion Children with serious illness who receive care from local hospices often interface with nurses who lack training, experience, and comfort in the provision of palliative and hospice care to pediatric patients. These findings should inform future development and investigation of educational resources, training programs, and child- and family-centered policies to improve the delivery of palliative and hospice care to children in the community.
Kaye EC; Gattas M; Kiefer A; Reynolds J; Zalud K; Li Chen; Lu Z; Baker Justin N
Journal of Pain and Symptom Management
2018
<a href="http://doi.org/10.1111/dmcn.14070" target="_blank" rel="noreferrer noopener">10.1111/dmcn.14070</a>
Outpatient appointment non-attendance and unplanned health care for children and young people with neurological conditions: a retrospective cohort study
Aim To test the hypothesis that children and young people with neurological conditions who missed outpatient appointments have more emergency inpatient admissions and Accident and Emergency centre (A&E) visits than those who missed none. Method Retrospective cohort of individuals aged up to 19 years with neurological conditions, identified from routine hospital data in England, UK from April 1st, 2003 to March 31st, 2015 using an International Statistical Classification of Diseases and Related Health Problems, coding framework. Counts of emergency inpatient admissions and A&E visits per person per year were modelled (random intercept negative binomial regression) with outpatient attendance the independent variable of interest. Results The cohort numbered 524 613 individuals. Those who missed outpatient appointments had 19 per cent (95% confidence interval [CI] 18-19) more emergency inpatient admissions and 16 per cent (95% CI 15-17) more A&E visits per year than those who missed none. 'Did not attends' had a larger increase in unplanned health care than patient or provider cancellations. If no appointments were missed, the models predict there would have been 107 000 fewer A&E visits from 2007/2008 to 2014/2015 and 104 000 fewer emergency inpatient admissions from 2003/2004 to 2014/2015.
Jarvis S; Livingston J; Childs AM; Fraser L
Developmental Medicine & Child Neurology
2018
<a href="http://doi.org/10.1136/bmjspcare-2017-001413" target="_blank" rel="noreferrer noopener">10.1136/bmjspcare-2017-001413</a>
Barriers to the use of buccal and intranasal fentanyl for breakthrough pain in paediatric palliative care: an exploratory survey
palliative therapy; letter; pediatrics; human; child; breakthrough pain; fentanyl
We recently administered a survey to investigate the prescribing of buccal and intranasal fentanyl for breakthrough pain in paediatric palliative care in the UK.
Harrop E; Jamieson L; Choy T H; Ho WHP; Wong ICK
BMJ supportive & palliative care
2018
<a href="http://doi.org/10.1136/bmjspcare-2017-001413" target="_blank" rel="noreferrer noopener">10.1136/bmjspcare-2017-001413</a>
Youth With Chronic Conditions and Risky Behaviors: An Indirect Path
adolescent; health status; structural equation modeling; education; major clinical study; student; wellbeing; vision; statistical analysis; human; article; female; male; controlled study; daily life activity; chronic disease; high risk behavior; juvenile; psychological adjustment; eating; gambling; internet addiction; substance use
Purpose: To compare risk behaviors between youths living with a chronic condition (CC) and their healthy peers, controlling for condition severity. Methods: Data were drawn from the baseline wave of the GenerationFRee study (students aged 15-24 years in postmandatory education) during the 2014-2015 school year. The sample (N = 5,179) was divided into youths with CC without limitations (N = 536; 10.4%), youths with limitations (N = 114; 2.2%), and a control group (CG; N = 4,529; 87.4%). Groups were compared on internalizing (perceived health status, vision of their future, emotional wellbeing) and externalizing behaviors (substance use, gambling, excessive internet use, disordered eating, violent and antisocial acts) controlling for potential confounders. Statistical analyses were carried out through structural equation modeling. Results are given as unstandardized coefficients. Results: Overall, CC youths showed an association with internalizing behaviors (coefficient: .78) but not with externalizing behaviors. In fact, the connection with externalizing behaviors was indirect via the internalizing behaviors (.32). CC Youths reporting psychological issues were more likely to adopt every externalizing behavior. Analyzing separately youths with CC limiting daily life activities and those without limitations, the results did not change substantially. However, the association with internalizing behaviors was much higher for those reporting limitations (2.18 vs. .42). Conclusions: Our results show that the link between suffering from a CC and adopting risk behaviors is indirect through internalizing behaviors. Health professionals should address emotional wellbeing and perception of the future rather than focus exclusively on the effects of risk behaviors on specific diseases.
Gubelmann A; Berchtold A; Barrense-Dias Y; Akre C; Newman CJ; Suris J C
Journal of Adolescent Health.
2018
<a href="http://doi.org/10.1016/j.jadohealth.2018.06.021" target="_blank" rel="noreferrer noopener">10.1016/j.jadohealth.2018.06.021</a>
Parental Personal Sense of Duty as a Foundation of Pediatric Medical Decision-making
We describe a model of parental (or more broadly, surrogate) decision-making that includes 5 aspects of decision-making that other models simplify or omit. First, we describe problem structuring recognizing that parents often face multiple potential problems or decisions with multiple potential solutions, rather than a single problem, and the initial challenge is deciding which of the problems to focus on. Second, we discuss sense-making recognizing that difficult decisions are not made in isolation but are often part of a confusing, labyrinthian situation in which disoriented parents must make a series of decisions over time in hopes of getting closer to 1 or more goals. Third, we describe path dependency recognizing that decisions influence what and how decisions are made later. Fourth, we discuss personal sense of duty recognizing that parents and other surrogate decision-makers have central personal roles, self-identities, and relationships with the patient, culminating in a personal sense of duty, such as what they perceive they should do to be in their own judgment a "good parent," which substantially affects their decision-making. Fifth, we describe self-judgments recognizing that parents experience distress when they judge themselves as falling short of their duties or if they think others are judging them for falling short. Clinical practice, medical ethics, and research regarding decision support can all benefit by acknowledging and addressing these key aspects of medical decision-making.
Feudtner C; Schall T; Hill D
Pediatrics
2018
<a href="http://doi.org/10.1542/peds.2018-0516C" target="_blank" rel="noreferrer noopener">10.1542/peds.2018-0516C</a>
Healthcare Users' Experiences of Communicating with Healthcare Professionals About Children Who Have Life-Limiting Conditions: A Qualitative Systematic Review
Human; Child; Adult; Emotions; Professional-Patient Relations; Collaboration; Siblings; PubMed; Qualitative Studies; Embase; CINAHL Database; Thematic Analysis; Medline; Palliative Care -- In Infancy and Childhood; Systematic Review; Honesty; Life Expectancy -- In Infancy and Childhood; Patient Attitudes; Psycinfo
Background: Globally, an estimated eight million children could benefit from palliative care each year. Effective communication about children with life-limiting conditions is well recognized as a critical component of high-quality pediatric palliative care. Objective: To synthesize existing qualitative research exploring healthcare users' experiences of communicating with healthcare professionals about children with life-limiting conditions. Design: The results of a systematic literature search were screened independently by two reviewers. Raw data and analytic claims were extracted from included studies and were synthesized using thematic analysis methods for systematic reviews. Data Sources: MEDLINE, PubMed, CINAHL, Embase, PsycINFO, Scopus, Web of Science, ProQuest, and ScienceDirect were searched for articles published in English between 1990 and May 2017. Results: This review included 29 studies conducted across 11 countries and involving at least 979 healthcare users (adults [n?=?914], patients [n?=?25], and siblings [n?=?40]). The four domains of communication experience identified through thematic synthesis are: Information, Emotion, Collaboration, and Relationship. Although included studies were from a range of settings and diverse populations, further research is needed to explore whether and how domains of communication experience differ across settings and populations. In particular, further research about children's palliative care experiences is needed. Conclusions: Healthcare users typically value communication with healthcare professionals: that (1) is open and honest, (2) acknowledges emotion, (3) actively involves healthcare users, and (4) occurs within established and trusting relationships.
Ekberg S; Yates P; Bradford Natalie K; Herbert A; Danby S
Journal of Palliative Medicine
2018
<a href="http://doi.org/10.1089/jpm.2017.0422" target="_blank" rel="noreferrer noopener">10.1089/jpm.2017.0422</a>
Primary palliative care skills in CF: Perspectives of adults with CF, caregivers, and CF care team members
advance care planning; hospice; clinical assessment; pain assessment; education; palliative therapy; major clinical study; lung; prognosis; caregiver; skill; conference abstract; human; child; female; male; controlled study; adult; perception; awareness; depression assessment; Kruskal Wallis test
Background: "Primary" palliative care (PC) skills for CF care teams are not clearly defined, but in general for serious illness include managing basic physical and emotional symptoms, and having basic discussions about prognosis, goals, suffering, and code status. Complex symptom management and addressing conflicts around goals and decisions are considered "specialty" PC skills for which PC consultation may be appropriate. We aimed to understand primary PC skills of CF care teams from the perspectives of team members, individuals with CF, and family caregivers. Methods: CF care team members ("providers"), adults with CF ("patients"), and family caregivers ("caregivers") rated the ability of CF care teams to provide various aspects of PC using a 5-point scale from "poor" to "excellent." Median ratings were compared between and among groups using Mann-Whitney and Kruskal-Wallis tests. Results: A total of 520 participants, including 70 patients, 100 caregivers, and 350 providers, completed surveys. CF care teams consistently rated their PC skills higher than patients or caregivers rated providers' skills. Providers rated their teams "very good" at pain and depression assessments, discussing lung transplant, and discussing prognosis, and "good" at discussing advance care planning (ACP), code status, end of life, and hospice. Patients and caregivers agreed that teams provide "very good" pain assessment, but rated teams "good" at assessing depression (P<0.001) and discussing prognosis (P=0.006), and "poor" at discussing lung transplant (P<0.001), ACP (P<0.001), code status (P<0.001), end of life (P<0.001), and hospice (P<0.001). Providers, patients, and caregivers affiliated with adult CF care teams rated teams more highly then providers, patients, and caregivers affiliated with pediatric teams at discussing lung transplant (P<0.001), end of life (P=0.006), ACP (P<0.001), code status (P=0.012), and hospice (P=0.016). A majority of patients (69%) and caregivers (60%) felt CF care teams should definitely receive more PC training. Conclusions: Discrepancies exist among patient/caregiver and provider perceptions of PC skills in CF, and skills of adult and pediatric teams may differ. While patients, caregivers, and providers agree that CF care teams are skilled in some "primary" PC skills like pain and depression assessment and discussing prognosis, patients and caregivers feel providers' skills are lacking in discussing lung transplant, ACP, code status, end of life, and hospice. Education for all groups could promote awareness of PC, and CF care teams may benefit from specific PC training to enhance "primary" PC skills as well as understanding when and how to utilize specialty PC services.
Dellon EP; Basile M; Hobler M R; Georgiopoulos A; Goggin JL; Chen E; Goss CH; Hempstead SE; Faro A; Kavalieratos D
Pediatric Pulmonology
2018
<a href="http://doi.org/10.1002/ppul.24152" target="_blank" rel="noreferrer noopener">10.1002/ppul.24152</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>
'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>
Speaking a different language: Communication patterns of palliative care and pediatric intensive care unit providers during family conferences
quality of life; palliative therapy; retrospective study; thematic analysis; language; human experiment; health care personnel; genetic transcription; pediatric intensive care unit; speech; conference abstract; human; controlled study; medical information; uncertainty; audio recording; hopelessness
Introduction: Family conferences between parents of critically ill children and health care providers in the pediatric intensive care unit (PICU) serve an important role in family centered care. Many family conferences include palliative care providers to help navigate the conversation. We do not know how communication differs between conferences with and without the palliative care team. The objective of this study was to compare the language used by the palliative care (PC) team and the critical care team during decisionmaking family conferences. Methods: We conducted a qualitative retrospective review of 18 family conferences that were audio-recorded and transcribed. Nine conferences included both the PC team and PICU physicians, while 9 included only PICU physicians. Statements made by the PC team were collected and compared to statements made by the PICU team. Thematic analysis was performed to categorize the statements. Results: In 9 audio-recordings of PICU only conferences, we identified 526 PICU statements generating 15 thematic categories. The most common theme was medical information giving with 215/526 (41%) statements followed by discussing medical options (65/526, 12%). Other PICU themes included, "healthcare provider challenges (14/526, 3%)," hopelessness (30/526, 6%), and insensitivity (18/526, 3%). Among the 9 audio-recordings with the PC team present, there were 282 PC statements, which generated 11 thematic categories. The most common theme was support, compromising 78/282 (28%) statements. Other common PC themes included quality of life (35/282, 12%) and medical information giving (47/282, 17%). Overlapping themes used by both PICU and PC teams were encouraging consulting services, giving medical information, presenting medical options, normalizing emotions, praising the family, providing support, and discussing uncertainty. Both PICU and PC teams promoted family engagement by soliciting parent questions; however the PC team was more likely to use open-ended questions. Conclusions: Palliative care team language appears different from that of PICU physicians in that PICU physicians spend more time giving medical information while the palliative care team more commonly offers supportive statements and encourages parental involvement. Each provider serves a different role during family conferences. The addition of the palliative care team to PICU family conferences may offer a balanced approach to communication where the medical team provides important medical information while simultaneously offering support for the family.
Ciriello A G; October TW
Pediatric Critical Care Medicine
2017
<a href="http://doi.org/10.1097/PCC.0000000000001213" target="_blank" rel="noreferrer noopener">10.1097/PCC.0000000000001213</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>