Children With Minimal Chance For Cure: Parent Proxy Of The Child's Health-related Quality Of Life And The Effect On Parental Physical And Mental Health During Treatment.
Pediatric Cancer; Oncology; Validity; Pedsql(tm); Impact; Module; Palliative Care; Diffuse Intrinsic Pontine Glioma; Clinical Neurology; Reliability; Pediatric Brain Tumor; Quality Of Life
Diffuse Intrinsic Pontine Glioma; Palliative Care; Pediatric Brain Tumor; Quality Of Life
Abstract
To assess health-related quality of life (HRQOL) from the time of diagnosis until disease progression in a cohort of children with diffuse intrinsic pontine glioma (DIPG). The assessment was collected from the perspectives of the child and their parents and evaluated the effect of the child's HRQOL on their parents' physical and mental well-being, thus providing insight into the optimal timing of palliative consultation, including anticipatory grief and bereavement services. This longitudinal study assessed 25 parents and their children, ages 2-17 years of age with DIPG across five time-points, baseline and weeks 2, 4, 6, 16, 24. Assessments included the PedsQL 4.0 Core Scales, PedsQL 3.0 Brain Tumor Scale, and Short-Form 36. HRQOL instruments were completed by the child (age ≥5 years) and parent-proxy (ages 2-17 years), with the parent completing the SF-36. Children's reports and parents' proxy of their child's HRQOL indicated poor physical functioning and increased anxiety at the initiation of therapy. A trending improvement in the children's HRQOL was reported by children and parents from baseline to week 6, with a decline at week 16. The childs' parent proxy reported cognitive problems, procedural anxiety and lower overall brain tumor HRQOL were assoicated with poorer self-reported parental mental status. Palliative care consultation should be initiated at the time of diagnosis and is supported in the high physical and emotional symptom burden reported by our patients, with heightened involvement initiated at 16 weeks. Prompt palliative care involvement, mitigating anxiety associated with clinic visits and procedures, management of brain tumor specific symptoms, advanced care planning, anticipatory grief and bereavement services, and care coordination may maximize HRQOL for patients and ensure positive long-term outcomes for parents of children with DIPG.
Mandrell B; Baker J; Levine D; Gattuso J; West N; Sykes A; Gajjar A; Broniscer A
Journal Of Neuro-oncology
2016
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).
DOI: 10.1007/s11060-016-2187-9
Spiritual Needs Of Families With Bereavement And Loss Of An Infant In The Neonatal Intensive Care Unit: A Qualitative Study
End Of Life Care; Clinical Neurology; Palliative Care; Medicine General & Internal; Health Care Sciences & Services; Providers
Iran; Neonatal Intensive Care Unit; Spiritual Needs; End Of Life; Family; Infants
CONTEXT:
The hospital is a place full of distress and questions about the meaning of life. The death of a child can cause a spiritual struggle and crisis. Therefore, it is necessary for health care providers in the neonatal intensive care unit (NICU) to assess the spiritual needs of families that have lost a child.
OBJECTIVES:
The purpose of this study was to explore the spiritual needs of families in Iran at the end of their baby's life and through bereavement in the NICU.
METHODS:
This study was an exploratory qualitative study performed using purposeful sampling and semi-structured interviews with 24 participants. Inclusion criteria for families, nurses, and physicians included having experienced at least one newborn death in the last six months in the NICU. The research environment was the NICU in Isfahan, one of the largest cities in Iran.
RESULTS:
Data analysis revealed three main themes: spiritual belief in a supernatural power, the need for comfort of the soul, and human dignity for the newborn.
CONCLUSION:
The results of this study created a new vision in addressing spiritual needs of Iranian families who experience the death of a newborn.
N Sadeghi; Hasanpour M; Heidarzadeh M; Alamolhoda A; Waldman E
Journal Of Pain And Symptom Management
2016
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).
Clusters Of Multiple Complex Chronic Conditions: A Latent Class Analysis Of Children At End Of Life.
Hospice Care; Pediatrics; Complex Chronic Conditions; Medicare Managed Care; Child; Clinical Neurology; Cancer; Palliative Care; Dependence; Latent Class Analysis; Couples; End Of Life Care; Health Care Sciences & Services Medicine General & Internal
Complex Chronic Conditions; Children; End Of Life; Latent Class Analysis; Pediatrics
CONTEXT:
Children at end of life often experience multiple complex chronic conditions with more than 50% of children reportedly having two or more conditions. These complex chronic conditions are unlikely to occur in an entirely uniform manner in children at end of life. Previous work has not fully accounted for patterns of multiple conditions when evaluating care among these children.
OBJECTIVES:
The objective of the study was to understand the clusters of complex chronic conditions present among children in the last year of life.
METHODS:
Participants were 1423 pediatric decedents from the 2007 to 2008 California Medicaid data. A latent class analysis was used to identify clusters of children with multiple complex chronic conditions (neurological, cardiovascular, respiratory, renal, gastrointestinal, hematologic, metabolic, congenital, cancer). Multinomial logistic regression analysis was used to examine the relationship between demographic characteristics and class membership.
RESULTS:
Four latent classes were yielded: medically fragile (31%); neurological (32%); cancer (25%); and cardiovascular (12%). Three classes were characterized by a 100% likelihood of having a complex chronic condition coupled with a low or moderate likelihood of having the other eight conditions. The four classes exhibited unique demographic profiles.
CONCLUSION:
This analysis presented a novel way of understanding patterns of multiple complex chronic conditions among children that may inform tailored and targeted end-of-life care for different clusters.
Lindley LC; Mack JW; Bruce DJ
Journal Of Pain And Symptom Management
2016
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).
Young Children's Ability To Report On Past, Future, And Hypothetical Pain States: A Cognitive-developmental Perspective
Declarative Memory; Randomized-trial; Mental Time-travel; Recall; Needle Pain; Child; Clinical Neurology; Age-children; Cognitive-development; Medical Procedures; Attention; Self-report; Memory; Pain Assessment; Intensity; Neurosciences; Anesthesiology; Self
Children are at times asked by clinicians or researchers to rate their pain associated with their past, future, or hypothetical experiences. However, little consideration is typically given to the cognitive-developmental requirements of such pain reports. Consequently, these pain assessment tasks may exceed the abilities of some children, potentially resulting in biased or random responses. This could lead to the over- or under-treatment of children's pain. This review provides an overview of factors, and specifically the cognitive-developmental prerequisites, that may affect a child's ability to report on nonpresent pain states, such as past, future, or hypothetical pain experiences. Children's ability to report on past pains may be influenced by developmental (age, cognitive ability), contextual (mood state, language used by significant others), affective and pain-related factors. The ability to mentally construct and report on future painful experiences may be shaped by memory of past experiences, information provision and learning, contextual factors, knowledge about oneself, cognitive coping style, and cognitive development. Hypothetical pain reports are sometimes used in the development and validation of pain assessment scales, as a tool in assessing cognitive-developmental and social-developmental aspects of children's reports of pain, and for the purposes of training children to use self-report scales. Rating pain associated with hypothetical pain scenarios requires the ability to recognize pain in another person and depends on the child's experience with pain. Enhanced understanding of cognitive-developmental requirements of young children's pain reports could lead to improved understanding, assessment, and treatment of pediatric pain.
Jaaniste T
Pain
2016
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).
DOI: 10.1097/j.pain.0000000000000666