Siblings of children with a complex chronic health condition: Maternal posttraumatic growth as a predictor of changes in child behavior problems
Behavior Problems; child behavior problems; Chronic Illness; complex chronic conditions; families; Family; Palliative Care; pediatric palliative care; Pediatrics; posttraumatic growth; Posttraumatic Growth; siblings; Siblings
Objective: The present study examined the role of maternal posttraumatic growth in changes in behavioral problems among the siblings of children with complex chronic health conditions. Methods: Data were collected from a sample of 70 siblings from 58 families with at least one child diagnosed with a life-threatening genetic, metabolic, or neurological condition. Every 6 months for up to 4 years, sibling behavior problems were assessed through both parent-reports and youth self-reports. At each visit, mothers also completed self-reports of posttraumatic growth. Results: Time-lagged multilevel regression analyses revealed that higher levels of maternal posttraumatic growth predicted subsequent declines in parent-reported internalizing, externalizing, and total behavior problems among healthy siblings. These findings were partially replicated using youth self-reports of their own behavior problems. Conclusion: The findings suggest that the benefits of posttraumatic growth may extend beyond the self to other family members, particularly to children in the family. (PsycINFO Database Record (c) 2017 APA, all rights reserved)
Stephenson E; DeLongis A; Steele R; Cadell S; Andrews GS; Siden H
Journal of Pediatric Psychology
2017
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/10.1093/jpepsy/jsw053" target="_blank" rel="noreferrer noopener">10.1093/jpepsy/jsw053</a>
Maintaining Integrity: How Nurses Navigate Boundaries in Pediatric Palliative Care
Humans; Professional-Family Relations; Palliative Care/px [Psychology]; Nursing Staff; Child; Female; Male; Nursing Methodology Research; Qualitative Research; Nursing; Palliative Care/mt [Methods]; Nurse-Patient Relations; Nursing Staff; Hospital/px [Psychology]; Critical Care Nursing/mt [Methods]; Nurse's Role/px [Psychology]; Hospital/og [Organization & Administration]; Philosophy
PURPOSE: To explore how nurses manage personal and professional boundaries in caring for seriously ill children and their families., DESIGN AND METHODS: Using a constructivist grounded theory approach, a convenience sample of 18 registered nurses from four practice sites was interviewed using a semi-structured interview guide., RESULTS: Nurses across the sites engaged in a process of maintaining integrity whereby they integrated two competing, yet essential, aspects of their nursing role - behaving professionally and connecting personally. When skillful in both aspects, nurses were satisfied that they provided high-quality, family-centered care to children and families within a clearly defined therapeutic relationship. At times, tension existed between these two aspects and nurses attempted to mitigate the tension. Unsuccessful mitigation attempts led to compromised integrity characterized by specific behavioral and emotional indicators. Successfully mitigating the tension with strategies that prioritized their own needs and healing, nurses eventually restored integrity. Maintaining integrity involved a continuous effort to preserve completeness of both oneself and one's nursing practice., CONCLUSIONS: Study findings provide a theoretical conceptualization to describe the process nurses use in navigating boundaries and contribute to an understanding for how this specialized area of care impacts health care providers., PRACTICE IMPLICATIONS: Work environments can better address the challenges of navigating boundaries through offering resources and support for nurses' emotional responses to caring for seriously ill children. Future research can further refine and expand the theoretical conceptualization of maintaining integrity presented in this paper and its potential applicability to other nursing specialties.Copyright © 2017 Elsevier Inc. All rights reserved.
Erikson A; Davies B
Journal of Pediatric Nursing
2017
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.2017.02.031" target="_blank" rel="noreferrer noopener">10.1016/j.pedn.2017.02.031</a>
The Validity of Using Health Administrative Data To Identify the Involvement of Specialized Pediatric Palliative Care Teams in Children with Cancer in Ontario, Canada.
BACKGROUND: Population-based research to identify underserviced populations and the impact of palliative care (PC) is limited as the validity of such data to identify PC services is largely unknown. OBJECTIVE: To determine the validity of using such data to identify the involvement of specialized pediatric PC teams among children with cancer. DESIGN: Retrospective cohort. SUBJECTS: Ontario children with cancer who died between 2000 and 2012, received care through a pediatric institution with a specialized PC team and a clinical PC database. MEASUREMENTS: All patients in the clinical databases were linked to population-based health services administrative databases. Six algorithms were created to indicate the use of formal pediatric PC teams based on the record type (physician billings vs. inpatient records vs. both) and number of eligible codes required (>/=1 vs. >/=2). Each was validated against the pediatric PC clinical databases. RESULTS: The cohort comprised 572 children; 243 were in the clinical databases. Algorithms using only inpatient records had high specificity (80%-95%) but poor sensitivity (21%-56%). Including physician billings increased sensitivity but lowered specificity. The algorithm with overall best performance required >/=2 physician billing or inpatient diagnosis codes indicating PC [sensitivity 0.79 (95% CI 0.73-0.84), specificity 0.58 (95% CI 0.53-0.64)]. CONCLUSIONS: Health administrative data identifies involvement of specialized pediatric PC teams with good sensitivity but low specificity. Studies using such data alone to compare patients receiving and not receiving specialized pediatric PC are at significant risk of misclassification and potential bias. Population-based PC databases should be established to conduct rigorous population-based PC research.
Widger K; Vadeboncoeur C; Zelcer S; Liu Y; Kassam A; Sutradhar R; Rapoport A; Nelson K; Wolfe J; Earle C; Pole JD; Gupta S
Journal Of Palliative Medicine
2017
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="https://doi.org/10.1089/jpm.2017.0028" target="_blank" rel="noreferrer">10.1089/jpm.2017.0028</a>
Charting the territory: Describing the functional abilities of children with progressive neurological conditions.
Functional Abilities; Pediatric Evaluation Of Disability Inventory; Progressive Genetic Metabolic Or Neurological Conditions (pncs)
AIMS: Little is known about the functional abilities of children with progressive genetic, metabolic, or neurological conditions (PNCs). In this study, children with PNCs were followed over a 2-year period to assess their functional abilities over time. Specific aims were to: 1) describe the changes in functional skills and the effects of age for children with PNCs, 2) assess changes in these children's need for caregiver assistance over time, and 3) examine relationships between these children's functional skills and need for caregiver assistance. METHODS: This study involved a longitudinal, descriptive design with three assessments occurring at Baseline, Year 1, Year 2. Functional skills and caregiver assistance were assessed by the Pediatric Evaluation of Disability Inventory (PEDI). The PEDI questionnaire was completed at baseline and then yearly by parents, along with the assistance of a trained research assistant (RA). RESULTS: The study was completed with 83 children (mean age at Baseline=7.1yrs, SD=4.6). Mean Functional skills scores were in the low ranges at Baseline and did not change significantly across time points (F(2, 71)=0.437, p=0.58). Time point had no effect on caregiver assistance ratings (p<0.2); however, children required greater amounts of help with self-care at later time points than for other functional domains. Statistically significant correlations were found between PEDI-Functional skills and caregiver assistance ratings (r=0.80-0.90, p<0.01). CONCLUSIONS: Functional skills were low for these children overall, irrespective of age. In children with PNCs: 1) mean functional skills did not change significantly over time; 2) caregiver assistance scores remained stable and 3) functional skills and levels of caregiver assistance were strongly positively correlated. Further research to explore the long-term functional trajectory in children with a PNC is recommended.
Tatla Sandy K; Holsti L; Andrews GS; Feichtinger L; Steele R; Siden H
Research In Developmental Disabilities
2017
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.ridd.2017.10.001" target="_blank" rel="noreferrer">10.1016/j.ridd.2017.10.001</a>
Siblings' Voices: A Prospective Investigation Of Experiences With A Dying Child
Children; End-of-life; Palliative Care; Pediatrics; Sibling
Sibling relationships reflect a unique childhood bond, thus the impact on a sibling when a child is seriously ill or dying is profound. We conducted a prospective, longitudinal qualitative study over two years using interpretive descriptive methodology to understand siblings' perspectives when a brother or sister was dying at home or in hospital. The insights from the 10 siblings revealed complex experiences, both personal and with the ill child, their families, and peers. These experiences were paradoxically sources of strain and of support, revealing the importance of validation and normalization in assisting siblings to successfully navigate the experience.
Russell CE; Widger K; Beaune L; Neville A; Cadell S; Steele R; Rapoport A; Rugg M; Barrera M
Death Studies
2017
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="https://doi.org/10.1080/07481187.2017.1334009" target="_blank" rel="noreferrer">10.1080/07481187.2017.1334009</a>
Understanding How Bereaved Parents Cope With Their Grief To Inform The Services Provided To Them
America, North; adolescents/ youth; bereavement/grief; cancer, coping, psychology/psychosocial issues; children; end-of-life issues; families, caregiving; infants; interpretive description; interviews, semistructured; knowledge transfer; palliative care; program evaluation; psychosocial issues; relationships, parent–child; research, clinical; research, qualitative
Our objective was to develop a rich description of how parents experience their grief in the first year after the death of their child, and how various bereavement follow-up and support services helped them during this time, with the aim of informing follow-up and support services offered to bereaved parents. Our findings situated parents’ individual experiences of coping within the social and institutional contexts in which they grieved. In the first year after the death of their child, parents regulated their intense feelings of grief through loss-oriented, restoration-oriented, and/or meaning reconstruction strategies. Often, parents’ relationships with others and many of the bereavement follow-up and support services helped them in this regard. This article also explores how the results may aid service providers in accompanying parents in a way that optimizes outcomes for these parents.
Stevenson M; Achille M; Liben S; Proulx MC; Humbert N; Petti A; Macdonald ME; Cohen SR
Qualitative Health Research
2017
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="https://doi.org/10.1177/1049732315622189" target="_blank" rel="noreferrer">10.1177/1049732315622189</a>
Children's End-of-life Health Care Use And Cost
Cause Of Death; Child; Health Care Costs; Only Child; Terminal Care
BACKGROUND AND OBJECTIVES: Heath care use and cost for children at the end of life is not well documented across the multiple sectors where children receive care. The study objective was to examine demographics, location, cause of death, and health care use and costs over the last year of life for children aged 1 month to 19 years who died in Ontario, Canada. METHODS: We conducted a population-based retrospective cohort study using administrative databases to determine the characteristics of and health care costs by age group and cause of death over a 3-year period from 2010 to 2013. RESULTS: In our cohort of 1620 children, 41.6% died of a chronic disease with wide variation across age groups. The mean health care cost over the last year of life was $78 332 (Canadian) with a median of $18 450, reflecting the impact of high-cost decedents. The mean costs for children with chronic or perinatal/congenital illnesses nearly tripled over the last 4 months of life. The majority of costs (67.0%) were incurred in acute care settings, with 88.0% of children with a perinatal/congenital illness and 79.7% with a chronic illness dying in acute care. Only 33.4% of children received home care in the last year of life. CONCLUSIONS: Children in Ontario receive the majority of their end-of-life care in acute care settings at a high cost to the health care system. Initiatives to optimize care should focus on early discussion of the goals of care and assessment of whether the care provided fits with these goals.
Widger K; Seow H; Rapoport A; Chalifoux M; Tanuseputro P
Pediatrics
2017
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="https://doi.org/10.1542/peds.2016-2956" target="_blank" rel="noreferrer">10.1542/peds.2016-2956</a>
Pain Reporting And Analgesia Management In 270 Children With A Progressive Neurologic, Metabolic Or Chromosomally Based Condition With Impairment Of The Central Nervous System: Cross-sectional, Baseline Results From An Observational, Longitudinal Study
Hospice; Life-limiting; Neuropathic Pain; Palliative; Pediatric Palliative Care
Little is known about the prevalence, characterization and treatment of pain in children with progressive neurologic, metabolic or chromosomal conditions with impairment of the central nervous system. The primary aims of this study were to explore the differences between parental and clinical pain reporting in children with life-limiting conditions at the time of enrollment into an observational, longitudinal study and to determine if differences in pain experiences were associated with patient- or treatment-related factors. Pain was common, under-recognized and undertreated among the 270 children who enrolled into the "Charting the Territory" study. Children identified by their parents as experiencing pain (n=149, 55%) were older, had more comorbidities such as dyspnea/feeding difficulties, were less mobile with lower functional skills and used analgesic medications more often, compared to pain-free children. Forty-one percent of children with parent-reported pain (21.8% of all patients) experienced pain most of the time. The majority of clinicians (60%) did not document pain assessment or analgesic treatment in the medical records of patients who were experiencing pain. Documentation of pain in the medical record was positively correlated with children receiving palliative care services and being prescribed analgesics, such as acetaminophen, nonsteroidal anti-inflammatory drugs and opioids, as well as the adjuvant analgesics gabapentin and amitriptyline.
Friedrichsdorf SJ; Postier A; Andrews GS; Hamre K E; Steele R; Siden H
Journal Of Pain Research
2017
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="https://doi.org/10.2147/JPR.S138153" target="_blank" rel="noreferrer">10.2147/jpr.s138153</a>