A Investigation into Hope, Self-Efficacy, Distress and Uncertainty in Parents Who Have A Child with A Life-Threatening or Life-Limiting Illness
Children; Families; Hope; Life-limiting illness; Life-threatening illness; Self-efficacy; article; care; behavior; caregiver; child; controlled study; demographics; distress; syndrome; exploratory; research; financial management; human; parental leave; pediatric; nurse; quantitative analysis; self concept; uncertainty
PURPOSE: To examine the experiences of parents who are caring for a child with a life-threatening or life-limiting illness (LTI/LLI) including levels of uncertainty, distress, hope, and self-efficacy to determine if there are significant variations with respect to demographic characteristics. DESIGN AND METHODS: Data for this analysis are derived from a quasi-experimental evaluation of a support intervention with a purposeful sample of parental caregivers from a western Canadian province. Participants completed a demographic survey and four quantitative measures at baseline and following use of the support intervention. RESULT(S): Many parents had high scores of hope and self-efficacy, with highest levels of hope amongst parents who could stay at home with their children, and higher self-efficacy expressed by parents without financial concerns. Increased levels of uncertainty and distress were found amongst parents without other children living in the home, and those with financial concerns, respectively. CONCLUSION(S): This exploratory analysis found that many parents experienced clinically significant distress along with uncertainty. The results determined that caring for children in the home other than the ill child significantly decreased uncertainty. High levels of parental hope and self-efficacy were frequently identified, with variations reflecting differences in social roles and stressors. The results contribute to an increased understanding of the value of support resources including parental leave and financial support. PRACTICE IMPLICATIONS: Pediatric nurses may consider adopting an approach to caring for families with children in treatment for LLIs/LTIs that gives high priority to promoting hope and self-efficacy while ensuring access to support resources. Copyright © 2022 Elsevier Inc. All rights reserved.
Spurr S; Bally J; Burles M; McHaro K
Journal of Pediatric Nursing
2022
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.2022.07.002">10.1016/j.pedn.2022.07.002</a>
Childhood cancer physical symptom burden and parent distress: The role of parent rumination
Pain; Family; Pediatrics; Symptoms; Neoplasms; Distress; Parental Role; Caregiver Burden; Income Level; Rumination (Cognitive Process)
Objective: Symptom burden of children with cancer appears to contribute to parent distress, but the mechanisms of this relationship are relatively unexplored. The current cross-sectional study examined rumination (i.e., repeated focus on negative events and experiences) as a mediator of the associations between parent-report of child (a) pain or (b) nausea, and parent posttraumatic stress symptoms (PTSS); parent-report of child symptoms → parent rumination → parent PTSS. Methods: Caregivers (N = 40, MAge = 38.7 years, female = 87.5%, White = 67.5%) of children with cancer (MAge = 9.4 years) were recruited at a Midwest pediatric cancer center following their child’s diagnosis (MMonths = 2.97 ± 1.98). Parents completed the PedsQL-Cancer Module, the Ruminative Response Scale, and the Impact of Events Scale—Revised. To test the hypothesized indirect effects, 2 separate regression models specifying 5,000 bias-corrected bootstrapping resamples were conducted via Hayes’ PROCESS macro. Family income served as a covariate. Results: Bootstrap regression analysis revealed that parent-report of child pain had an indirect effect on parent PTSS via parent rumination, controlling for family income, R2 = .37, ß = −.24, 95% CI [−.494, −.033]. Child nausea demonstrated an indirect effect on parent PTSS via parent rumination, controlling for family income, R2 = .36, ß = −.22, 95% CI [−.428, −.008]. Conclusions: Findings indicate that worse parent perception of child symptoms may lead to elevated parent distress through increased rumination. These results support the role of pediatric psychologists and the interdisciplinary team in alleviating parent distress through clinical management of both child physical symptoms and parent rumination. (PsycInfo Database Record (c) 2021 APA, all rights reserved)
Fisher RS; Perez MN; Basile NL; Pepper M; Gamwell KL; McNall-Knapp R; Carrick Carter J; Mayes S; Chaney JM; Mullins LL
Clinical Practice in Pediatric Psychology
2021
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/10.1037/cpp0000403" target="_blank" rel="noreferrer noopener">10.1037/cpp0000403</a>
Improving Quality of life in Hospitalized Children
Children; quality of life; Hospital; Distress
There are many ways to add to children's quality of life within the hospital environment. Inpatient settings offer both opportunities and challenges with respect to providing care to children with life-threatening illnesses. The barriers to pediatric palliative care (PPC) on hospital wards, as with those in other settings, frequently stem from misconceptions. However, some barriers are intensified by characteristics of acute inpatient centers. Yet some characteristics of the inpatient setting, including the availability of human resources and unique interventions, offer creative ways to ease distress and improve quality of life for children and their families.
2014-08
Rapoport A; Weingarten K
Pediatric Clinics Of North America
2014
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).
Journal Article
<a href="http://doi.org/10.1016/j.pcl.2014.04.010" target="_blank" rel="noreferrer">10.1016/j.pcl.2014.04.010</a>
National Survey of Sibling Support Services in Children's Hospitals
Child; life; Palliative care; Pediatric; Psychosocial support; Serious illness; Siblings; article; child; comfort; distress; syndrome; education; human; palliative; therapy; psychosocial; care; quality of life; sibling; teaching; United States
Nearly a quarter-million children are siblings to children living with serious illness. Intense physical, emotional, social and psychological concerns are introduced when a brother or sister is diagnosed with a serious illness or disease. Support services for siblings are critical to promote positive outcomes and decrease negative consequences and align with parents' desires to support all of their children. These include services offered to the sibling or family to provide comfort or enhance the quality of life during a child's serious illness. Despite national standards, sibling support services are often difficult for families to access. The aim of this study was to describe sibling support activities provided through teaching children's hospitals across the United States using a cross-sectional, descriptive design. Results indicate most hospitals surveyed offer sibling support services that focus on sibling education about the illness; parent education on how to anticipate the siblings needs; and activities for families to do together, yet face barriers to delivery. Services focused directly on siblings and actively supporting their adaptation were least often provided and less than half reported screening siblings for psychosocial distress. Findings suggest that sibling support services may be an important resource to minimize distress and promote adaptation for siblings. This description of current and available sibling support services is an important starting point for enhancing services, policies, and institutions that fully envelope siblings into patient- and family-centered care. Copyright © 2022 Informa UK Limited, trading as Taylor & Francis Group.
Mooney-Doyle K; Franklin QM; Burley SR; Root MC; Akard TF
Progress in Palliative Care.
2022
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/10.1080/09699260.2022.2094173">10.1080/09699260.2022.2094173</a>
Parenting In The Face Of Childhood Life-threatening Conditions: The Ordinary In The Context Of The Extraordinary
Distress; Framework; Child; Perspectives; Cancer; Health Policy & Services; Serious Illness; Outcomes; Families; Bereaved Siblings
Life-threatening Condition; Palliative Care; Parenting; Pediatrics; Qualitative Description
OBJECTIVE:
Uncovering what it means to be a parent during the extraordinary time of a child's life-threatening condition (LTC) is important for understanding family goals, decision making, and the work of parenting within this context.
METHOD:
Qualitative descriptive methods were employed to describe the everyday experience of parenting both children who have an LTC and their healthy siblings.
RESULTS:
Some 31 parents of 28 children with an LTC who have healthy siblings participated in our study. Four themes emerged from the data that describe a parental desire to maintain emotional connection with all of their children, how parents use cues from their children to know them better and develop parenting strategies, how parents change as a result of caring for a child with an LTC, and how they strive to decrease suffering for all of their children.
SIGNIFICANCE OF RESULTS:
The findings of our study have implications for clinical practice, family-focused research, and health policy pertaining to families of children with life-threatening conditions.
Mooney-Doyle K; Deatrick JA
Palliative & Supportive Care
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: 10.1017/S1478951515000905
Perceived Infant Well-Being and Self-Reported Distress in Neonatal Nurses
distress; infant; infant welfare; longitudinal study; neonatal intensive care units; neonatal nurses; quality of life
BACKGROUND: Infants who are admitted to a neonatal intensive care unit (NICU) may experience significant symptom burden. Parents are often distressed by these symptoms, which can affect their long-term coping and distress. There is limited research examining nurse perceptions of infant well-being (symptoms, suffering, and quality of life [QOL]) and associations with nurse distress. OBJECTIVE(S): The objective of this descriptive study was to explore associations between nurse perceptions of infant well-being and self-reported distress. METHOD(S): Nurses caring for infants with potentially life-threatening/life-limiting conditions were recruited from a Level IV NICU in the Midwestern United States as a part of a study on infant symptom burden. Nurses reported their perceptions of infant well-being and their own distress on a 5-point Likert scale. Surveys were administered at the bedside weekly for up to 12 weeks, depending on length of stay. Infant suffering and QOL were examined in relation to nurse distress. A cross-classified multilevel model was used to account for dependence within nurse and within patient. RESULT(S): A total of 593 surveys were collected from nurses. Using a cross-classified multilevel model with variables entered simultaneously, nurse perceptions of greater infant suffering and lower infant QOL were significantly associated with greater nurse distress. DISCUSSION: Preliminary evidence shows that greater perceived infant suffering and lower perceived infant QOL may be associated with greater levels of self-reported distress in NICU nurses. Further work is needed to better understand factors related to symptom management in the NICU and the potential role of caregiver distress and compassion fatigue in NICU nurses.
Fortney CA; Pratt M; Dunnells ZDO; Rausch JR; Clark OE; Baughcum AE; Gerhardt CA
Nursing Research
2020
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/NNR.0000000000000419" target="_blank" rel="noreferrer noopener">10.1097/NNR.0000000000000419</a>
Perceived potentially inappropriate treatment in the PICU: frequency, contributing factors and the distress it triggers
distress; medical futility; death & dying; end-of-life (EOL); ethical conflict; potentially inappropriate treatment
BACKGROUND: Potentially inappropriate treatment in critically ill adults is associated with healthcare provider distress and burnout. Knowledge regarding perceived potentially inappropriate treatment amongst pediatric healthcare providers is limited. OBJECTIVES: Determine the frequency and factors associated with potentially inappropriate treatment in critically ill children as perceived by providers, and describe the factors that providers report contribute to the distress they experience when providing treatment perceived as potentially inappropriate. METHODS: Prospective observational mixed-methods study in a single tertiary level PICU conducted between March 2 and September 14, 2018. Patients 0-17 years inclusive with: (1) ≥1 organ system dysfunction (2) moderate to severe mental and physical disabilities, or (3) baseline dependence on medical technology were enrolled if they remained admitted to the PICU for ≥48 h, and were not medically fit for transfer/discharge. The frequency of perceived potentially inappropriate treatment was stratified into three groups based on degree of consensus (1, 2 or 3 providers) regarding the appropriateness of ongoing active treatment per enrolled patient. Distress was self-reported using a 100-point scale. RESULTS: Of 374 patients admitted during the study, 133 satisfied the inclusion-exclusion criteria. Eighteen patients (unanimous - 3 patients, 2 providers - 7 patients; single provider - 8 patients) were perceived as receiving potentially inappropriate treatment; unanimous consensus was associated with 100% mortality on 3-month follow up post PICU discharge. Fifty-three percent of providers experienced distress secondary to providing treatment perceived as potentially inappropriate. Qualitative thematic analysis revealed five themes regarding factors associated with provider distress: (1) suffering including a sense of causing harm, (2) conflict, (3) quality of life, (4) resource utilization, and (5) uncertainty. CONCLUSIONS: While treatment perceived as potentially inappropriate was infrequent, provider distress was commonly observed. By identifying specific factor(s) contributing to perceived potentially inappropriate treatment and any associated provider distress, organizations can design, implement and assess targeted interventions.
Sarpal A; Miller MR; Martin CM; Sibbald RW; Speechley KN
Frontiers in Pediatrics
2024
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.2024.1272648" target="_blank" rel="noreferrer noopener">10.3389/fped.2024.1272648</a>
The Role of Palliative Care in Caring for the Families of Patients With COVID-19
Betacoronavirus; Child; Child Care; communication; Communication; Coronavirus Infections/*therapy; Covid-19; decision-making; distress; family; Family/psychology; Humans; Palliative Care/methods; Pandemics; Pastoral Care; Pneumonia; Social Work; support; Viral/*therapy
In palliative care, we strive to provide care to the whole patient. When we think about the whole patient, we include the people who are important in our patients' lives. Our New York City-based palliative care team has found that caring for patients' loved ones has proven to be an even more important aspect of the care we have provided during the COVID epidemic. In this article, we describe the multicomponenet interdisciplinary interventions we have implemented to enhance our ability to create a therapeutic alliance with family members and facilitate the provision of goal concordant care to patients with COVID during this extremely difficult time.
Bakar M; Capano E; Patterson M; McIntyre B; Walsh C J
American Journal of Hospice and Palliative Care
2020
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/10.1177/1049909120931506" target="_blank" rel="noreferrer noopener">10.1177/1049909120931506</a>