"The Key Is to Value Every Little Achievement": A Qualitative Study of the Psychological Experience of Parent Caregivers in Paediatric Palliative Care
Palliative Care; family; qualitative methods; chronic illness; experience; health psychology
In Europe, Portugal has been identified as the country with the most rapid evolution of paediatric palliative care provision, which is a highly complex experience for families. The present descriptive-exploratory study seeks to contribute to the understanding of the psychological experience of life-limiting conditions in parent caregivers. A total of 14 families completed a sociodemographic and clinical data sheet and answered a structured online interview based on an incomplete narrative resulting from the Unwanted Guest Metaphor. A thematic analysis of the various narratives was performed through an inductive-deductive process. The results provide a holistic view of 10 essential dimensions in the parental psychological experience and contribute to the design of intervention methodologies in an eco-systemic approach. The importance of clear communication with health professionals, an awareness of the unpredictability of the disease, the desire for more self-care, the difficulty in understanding their children's needs and the threat implicit in everyday life are some of the main findings. This research emphasizes the importance of having opportunities of emotional expression and psychoeducation about anxiety' management, enhancing the perception of positive characteristics in children with palliative needs and creating time for the couple. The study has some limitations, such as the small sample size, and suggests that further research should explore the father's experience.
Nogueira AJ; Ribeiro MT
Clinics and Practice
2023
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.3390/clinpract13030062" target="_blank" rel="noreferrer noopener">10.3390/clinpract13030062</a>
Listening to Parents of Children With Cancer-Between Life and its end
This study aimed to explore and provide an in-depth insight into the experience and perceptions of parents to children with cancer at the end of life (EOL). A sample of 15 parents of children (aged 2-18) with cancer participated in semi-structured interviews in an oncology department of an Israeli hospital. Data were analyzed using a phenomenological thematic analysis approach. The findings that emerged revealed: (a) the cultural aspect of the Israeli society of the importance of family and of the children within the family, (b) the parents' unique way of coping, of holding a dual awareness, and (c) emphasizing that hope and support are necessary components for parents' ability to cope with their child having terminal cancer, at the EOL. A number of important practical recommendations can be made for professionals treating child facing the EOL with cancer and their families. First, understanding the "double awareness" developed by parents of children facing with EOL cancer. Second, there is significance to bring the medical staff closer to the patient's bed, which is to say, training medical staff in open communication on this subject. Third, it is recommended to construct intervention programs that would accompany the whole family and not just the parents. Fourth, there is some necessity to train healthcare teams working in pediatric oncology wards and providing palliative care, to teach them how to help people hold on hope and to evaluate hope in parents of children at the EOL.
Manor-Binyamini I; Schreiber-Divon M
Journal of Patient Experience
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/10.1177/23743735221106589" target="_blank" rel="noreferrer noopener">10.1177/23743735221106589</a>
The Experiences of Parents of Children in Pediatric Palliative Care: A Qualitative Study
Experience; Mothers; Pediatric palliative care; Qualitative study
PURPOSE: This study aims to better understand the experiences of mothers of children receiving pediatric palliative care. DESIGN AND METHODS: The qualitative phenomenological method was used to determine the mothers' experiences. The study sample included 15 mothers. Individual interviews, an introductory information form and a semi-structured interview form were used for data collection. The data were analyzed with Colaizzi's seven-step method. MAXQDA was used for coding and creating themes. RESULTS: Three main themes of the interviews emerged; family experiences, social life and care in the palliative care unit. The mothers said that family relationships were affected, that they experience fear of loss, that they experience depression, that all responsibility for treatment and care lies with the mothers, and that there is no social support. Mothers said that they are in the same place as mothers of children in similar situations and that they are happy and comfortable because they have single rooms. In addition, the mothers stated that they are very afraid of the COVID-19 virus infecting their children and therefore losing their children. CONCLUSIONS: The mothers experienced some problems such as fear of loss, depression, care burden, social support, exclusion, daily life, social relationships, feeling safe, and emotional effect. PRACTICE IMPLICATIONS: Pediatric nurses need to understand mothers' anxiety, grief, relationships with their children, and coping strategies to provide support.
Karakul A; Kıratlı D; Akgül AE; Çelik T
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.2022.08.015" target="_blank" rel="noreferrer noopener">10.1016/j.pedn.2022.08.015</a>
Grieving Experiences of Parents with Children in End-of-Life Care-A Qualitative Review Protocol
Bereavement; end-of-life; care; experience; grief; grieving; palliative care; parents
Parents that accompany their children in end-of-life care until death go through a devastating, complex and vulnerable situation, which is experienced in a unique way and with individual needs, given the specificity of the palliative care setting in which it occurs. This qualitative review aims to identify and synthesize the best evidence available on the grieving experiences of parents with children in end-of-life care in a palliative care setting. This qualitative review protocol is according to the review method proposed by the Joanna Briggs Institute. The results will enable us to identify how parents of children in end-of-life care in a palliative care setting experience their grieving process. This review will broaden the horizon of understanding of the specificities of the grieving experience of parents who have accompanied their children in end-of-life care until their death in a palliative care setting and promote research in this context. The results of the review will also allow the construction of an "end-of-life grieving script", with the aim of identifying one's individuality in the grieving process. This protocol is registered at Open Science Framework.
Correia ME; Melo T; Nobre J
Nursing Reports
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/10.3390/nursrep12030041">10.3390/nursrep12030041</a>
Factors that Contribute to Bereaved Parents' Perceptions of Neonatal Palliative Care: A Systematic Literature Review
infant; review; guideline; neonatal; newborn; parent; experience; family; quality; satisfaction; palliative; Reviews; human; article; female; male; perception; psychological; therapy; practice; care; Reporting; intensive; unit; and; for; Items; Meta-Analyses; Preferred; systematic; Systematic; analysis; meta; units
OBJECTIVES: Neonatal palliative care (NPC) is an emerging subset of care in United States (US) neonatal intensive care units (NICUs) that provides relief for both infants and families at the end of life for infants with terminal diagnoses. Families play a integral role in the decision-making process for their infant, but their experiences with and perceptions of the support and care provided to them via NPC is unclear to health professionals. This literature review summarizes the state of knowledge on parents' perspectives of NPC while focusing on the specific factors that influence their experiences and satisfaction with NPC. METHOD(S): A systematic literature review was conducted following the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines. Articles published in peer-reviewed journals between January 2010 and January 2021 that investigated parents' perceptions of neonatal palliative care either as their central topic or as a sub-topic as part of a larger focus. RESULT(S): A total of 16 articles (N = 16) were included in this review. Three overarching themes encompass the findings of the literature review: parent-clinician interactions, parent-infant interactions, and parent-self interactions. Within these themes, topics such as consistent and clear communication, involvement in care decisions, and social and psychological support were explored. CONCLUSION(S): Clinicians must focus on these important quality indicators to ensure they provide the best care possible to the patients and families that they serve. Further research must be done to investigate parent satisfaction and needs in relation to NPC more deeply and to develop more supportive interventions and protocols.
Hamel M N; Beltran SJ
American Journal of Hospice and 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/10.1177/10499091221113277">10.1177/10499091221113277</a>
Starting out in haziness': Parental experiences surrounding the diagnosis of their child's non-malignant life-limiting condition in Ireland
Diagnosis; Children; Parents; Experience; Life-limiting
PURPOSE: To explore parental experiences surrounding the diagnosis of their child's non-malignant life-limiting condition. DESIGN AND METHODS: A qualitative descriptive study design using single-occasion one-to-one semi-structured interviews collected data from twenty-three parents of children diagnosed with non-malignant life-limiting conditions. FINDINGS: 'Starting out in haziness' was the central concept when parents' recounted the time they learnt of their child's diagnosis. Analysis revealed three main distinct but interconnected themes within this concept helping us better understand the experiences of parents at this particular time, those being: 'Entering a whole new world', 'Acquiring a learner permit' and 'Navigating the unknown territory'. CONCLUSION: Learning of their child's diagnosis was highly distressing for parents and was marked with emotional chaos. Parents' process of realization regarding the diagnosis was related to the diagnostic process. Information and communication needs should be individualized accordingly. The findings have implications for service provision, particularly with regard to how supportive care is delivered at this time.
Hurley F; Kiernan G; Price J
Journal of Pediatric Nursing
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/10.1016/j.pedn.2020.12.015" target="_blank" rel="noreferrer noopener">10.1016/j.pedn.2020.12.015</a>
"It's more difficult...": Clinicians' experience providing palliative care to adolescents and young adults diagnosed with advanced cancer
family; human; adult; female; male; perception; article; aged; Canada; adolescent; young adult; health personnel attitude; cancer palliative therapy; physician; psychiatrist; tertiary care center; experience; qualitative research; semi structured interview; thematic analysis; advanced cancer; radiation oncologist; care behavior; clinician parent communication difficulty; advanced practice nurse; theoretical study; medical oncologist; counter transference
PURPOSE Adolescents and young adults (AYAs; age 15-39 years) with advanced cancer are a population in whom quality of life is uniquely affected because of their stage of life. However, training focused on palliative care for AYAs is not routinely provided for health care providers (HCPs) in oncology. This study aims to explore the experiences of HCPs involved in introducing and providing palliative care caring for AYAs with advanced cancer and their families to understand the unique challenges HCPs experience. METHODS Using a qualitative descriptive design, semistructured interviews were conducted with medical and radiation oncologists, palliative care physicians, psychiatrists, and advanced practice nurses involved in caring for AYAs diagnosed with advanced cancer (N = 19). Interviews were transcribed verbatim and analyzed using thematic analysis in combination with constant comparative analysis and theoretical sampling. RESULTS There were 19 participants, 9 men and 10 women, with a median age of 45 years (range, 24-67 years). Six were palliative care physicians, 5 medical oncologists, 4 nurse practitioners, and 2 each radiation oncologists and psychiatrists. Overall, participants perceived the provision of palliative care for AYAs to be more difficult compared with older adults. Four themes emerged: (1) challenges helping AYAs/families to engage in and accept palliative care, (2) uncertainty regarding how to involve the family, (3) HCP sense of tragedy, and (4) HCP sense of emotional proximity. CONCLUSION Findings from this study support the development of dedicated training for HCPs involved in palliative care for AYA.
Avery J; Geist A; D'Agostino N M; Kawaguchi S K; Mahtani R; Mazzotta P; Mosher P J; al-Awamer A; Kassam A; Zimmermann C; Samadi M; Tam S; Srikanthan A; Gupta A
Journal of Oncology Practice
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/10.1200/JOP.19.00313" target="_blank" rel="noreferrer noopener">10.1200/JOP.19.00313</a>
Experience of nurses who work with children with palliative care needs: A mixed-method systematic review
Education; Experience; Nurses; Palliative care; Pediatric
OBJECTIVE: The importance of palliative care education for nurses has been recognized worldwide. The study aims to explore the experiences of nurses working with children with palliative care needs and to identify any related educational needs. METHODS: The electronic databases of CINAHL, Cochrane, PubMed, OVID, Social Care Online, Web of Science, Scopus, and ProQuest were searched for the period 2000-2015. RESULTS: Finding revealed that working with children with palliative care needs is an emotionally struggling job for nurses, especially when they try to manage the transition of pediatric patients from curative to palliative care. Staffing level and time constraints comprise a major obstacle in pediatric palliative care. Focusing on invasive treatment and technology in spite of the feelings that it will not improve patients' health status intensifies the feeling of guilt and helplessness for nurses. Finally, nurses asserted the importance of receiving pediatric palliative care education, especially how to communicate with children with palliative care needs and their families. SIGNIFICANCE OF RESULTS: Further research is recommended with regard to nurses' experience in communication with children with palliative care needs. Nursing education in pediatric palliative care is significantly important, especially how to communicate with children with palliative care needs and their families.
Atout M
Palliative and Supportive Care
2019
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
<a href="http://doi.org/10.1017/s1478951519000956" target="_blank" rel="noreferrer noopener">10.1017/s1478951519000956</a>
Fluoroscopically Guided Dilation of Esophageal Strictures in Patients With Dystrophic Epidermolysis Bullosa: Long-Term Results
children; experience; management; balloon dilatation; benign esophageal stricture; dystrophic epidermolysis bullosa; eb; fluoroscopically guided balloon dilation; Radiology Nuclear Medicine & Medical Imaging; stenosis; feeding difficulties; epidermolysis bullosa; surgical intervention; fluoroscopically guided dilation of esophageal strictures; dysphagia; nutritional failure; gastronomy tube placement
OBJECTIVE. The purpose of this study was to investigate the immediate and long-term outcomes after fluoroscopically guided balloon dilation of esophageal strictures in a series of patients with dystrophic epidermolysis bullosa (DEB). MATERIALS AND METHODS. Between 2005 and 2011, the medical records of all patients with DEB treated with fluoroscopically guided balloon dilation of esophageal strictures were included in the study and retrospectively analyzed. The indication for treatment was dysphagia attributed to at least one radiologically verified esophageal stricture. The primary endpoints of the study included procedural technical success, clinical improvement assessed with a 0-4 dysphagia score, and major complication rate. Secondary endpoints were patient survival and reintervention rates. RESULTS. Nineteen consecutively registered patients with DEB (age range, 10-51 years; mean, 30 +/- 12.2 years) and dysphagia due to esophageal strictures were treated with fluoroscopically guided balloon dilation. In total, 90 procedures and 121 dilations were performed to manage 28 lesions. Balloon diameter ranged from 8 to 18 mm. The mean follow-up time was 47.51 +/- 16.64 months (range, 17-73 months). The technical success rate was 96.7% (87/90). There were no major complications. The mean reintervention rate was 1.19 dilations per patient per year, and the postprocedural dysphagia score (0.72 [95% CI, 0.56-0.87]) was significantly lower than baseline (2.50 [95% CI 2.35-2.65]) (p < 0.001). CONCLUSION. Repeated fluoroscopically guided balloon dilation is safe and effective for the management of dysphagia caused by esophageal strictures in DEB. Use of this technique was associated with marked clinical improvement in dysphagia and satisfactory long-term reintervention rates with no major complications.
Spiliopoulos S; Sabharwal T; Krokidis M; Gkoutzios P; Mellerio J; Dourado R; Adam A
American Journal of Roentgenology
2012
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/10.2214/ajr.11.8159" target="_blank" rel="noreferrer noopener">10.2214/ajr.11.8159</a>
Endoscopic balloon dilatation of esophageal strictures in children
Children; Pediatrics; experience; management; Dysphagia; Otorhinolaryngology; atresia; Balloon dilatation; conservative treatment; dilation; epidermolysis bullosa; Esophageal strictures; ingestion; repair; feeding difficulties; surgical intervention; endoscopic balloon dilatation
Aim of the study: To assess the efficacy and safety of endoscopic balloon dilatation of esophageal strictures in children. Material and methods: Design: retrospective case series; population: 49 patients under 18 years of age referred to our center for esophageal strictures; treatment: endoscopic balloon dilatation: outcome parameters: residual dysphagia, weight gain, iatrogenic esophageal perforation, assessment of the esophageal lumen by endoscopy or esophagogram. Results: The three main etiologies were esophageal atresia (49%; n = 24), corrosive injury (25%; n = 12), and epidermolysis bullosa (14%; n = 7), followed by a heterogeneous group of rarer causes (12%; n = 6). The number of dilatations ranged from 1 to 8 sessions per patient (median +/- SEM: 2 +/- 0.3). The length of the follow-up period ranged from 20 to 109 months (median +/- SEM: 40 +/- 4 months). Treatment was successful in 86% of cases (n = 42). Twelve percent of patients (n = 6) had a residual stenosis requiring surgery, and a further one still experienced swallowing difficulties requiring enteral nutrition via gastrostomy in spite of the absence of significant residual stricture. Results were less satisfactory in cases of corrosive injury than with other etiologies. Three esophageal perforations were observed (6% of patients; 2% of procedures). All were medically treated. Conclusions: Endoscopic balloon dilatation is a simple, safe and efficacious treatment of esophageal strictures in children. (C) 2011 Elsevier Ireland Ltd. All rights reserved.
Alshammari J; Quesnel S; Pierrot S; Couloigner V
International Journal of Pediatric Otorhinolaryngology
2011
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.ijporl.2011.07.031" target="_blank" rel="noreferrer noopener">10.1016/j.ijporl.2011.07.031</a>
Nurses' Experiences in End-of-Life Care in the PICU: A Qualitative Systematic Review
end-of-life care; experience; Picu; qualitative systematic review
The experiences of end-of-life care by nurses in the pediatric intensive care unit are the subject of this systematic review. Six qualitative articles from three different countries were chosen for the review using methods from Joanna Briggs Institute. The themes discovered included the following: insufficient communication, emotional burden, moral distress from medical futility, strengthening resilience, and taking steps toward hospice. These themes are discussed in detail followed by recommendations for practice to assist nurses in their quest for a good death for their pediatric patients.
Mu PF; Tseng YM; Wang CC; Chen YJ;Huang SH; Hsu TF; Florczak KL
Nursing science quarterly
2019
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/10.1177/0894318418807936" target="_blank" rel="noreferrer noopener">10.1177/0894318418807936</a>
Redefined Boundaries: When Palliative Care Hits Home.
Experience; Families; Palliative Treatment; Social Workers -- Attitudes
A personal narrative is presented which explores the author's experience as Master of Social Work (MSW) at the Division of Comfort and Palliative Care at Children's Hospital in Los Angeles, California.
Jonas DF
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="http://doi.org/10.1089/jpm.2017.0177" target="_blank" rel="noreferrer">10.1089/jpm.2017.0177</a>
The Unexpected Death Of A Child And The Experience Of Emergency Service Personnel
Death; Emergency Service Personnel (esp); Experience; Pediatric
INTRODUCTION: In 2013, 55,000 infants and children, aged 0 to 14, died in the United States. Nearly 7,000 of those deaths were attributed to traumatic causes. A child's death significantly affects emergency service personnel (ESP) caring for children and families. This study explores the lived experience of ESP involved in unsuccessful pediatric resuscitation efforts and how this experience affects them professionally and personally. METHODS: A phenomenologic approach guided this study. Using an open-ended format, an interview was conducted with a purposive sample of ESP who experienced unexpected pediatric death. Eight ESP participated in semistructured, face-to-face interviews, ranging in length from 35 to 75 minutes. The research question asked: "What is it like for you when a child dies after an unsuccessful resuscitation attempt?" Data were analyzed using thematic analysis. RESULTS: Van Manen's 4 existentials guided this study, and 10 subthemes emerged that included: "what if," "dying before my eyes," "team," "what if it was were my child?/being a parent," "the environment," "being trapped," "wounded healer," "education," "anger," and "coping." DISCUSSION: This study explores the experience of ESP involved in unsuccessful pediatric resuscitation that resulted in unexpected pediatric death and ESP's perceptions of this experience: thoughts of loss, a sense of anger, and a lack of preparation to cope with unexpected pediatric death and the unknowns of life.
Lindsay J; Heliker D
Journal Of Emergency 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).
DOI: 10.1016/j.jen.2017.06.002