Quality of Care in Pediatric Palliative Care: A Scoping Review
Abstract
:1. Introduction
- Structure and process of care;
- Physical aspects of care;
- Psychological aspects of care;
- Social aspects of care;
- Spiritual, religious, and existential aspects of care;
- Cultural aspects of care;
- Care of the patient approaching the end of life;
- Ethical and legal aspects of care.
2. Materials and Methods
2.1. Identification of the Research Question
2.2. Identification of Relevant Studies
- In English: pediatric palliative care OR ((palliative OR palliative care OR palliative needs OR terminal care OR terminal illness OR end of life) AND (child* OR infan* OR adolesc*)) AND (quality of care OR care quality OR quality care OR quality) AND (Spain OR Spanish);
- In Spanish: Cuidados paliativos pediátricos OR ((paliativo OR atención paliativa OR necesidades paliativas OR cuidados terminales OR enfermedad terminal OR final de la vida) AND (niñ* OR infan* OR adolescen*)) AND (calidad asistencial OR calidad de la asistencia OR calidad de los cuidados OR calidad) AND (españ*).
2.3. Selection of Studies
2.4. Data Extraction
3. Results
3.1. Structure and Process of Care
3.2. Psychological Aspects of Care
3.3. Caring for the Patient Approaching the End of Life
4. Discussion
Limitations of the Study
5. Conclusions
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Conflicts of Interest
References
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Inclusion Criteria | Exclusion Criteria |
---|---|
Studies published between 2000 and 2023 In English and Spanish Full text available Patients between 0 and 18 years old Carried out in Spain Qualitative, quantitative, and mixed methods studies published in scientific journals Studies that collect variables on the structure and process of care, on psychological aspects of care, and on the care of the patient approaching the end of life | Reviews and case studies Books, book chapters, doctoral theses, congress abstracts, letters, editorials, commentaries Studies that are not focused on PC Studies where care is not linked to the hospital setting |
Author/s | Year | Language | Region | Aim | Main Technique | Cohort | Area/s Addressed |
---|---|---|---|---|---|---|---|
Calleja Gero et al. [20] | 2011 | SPA | Madrid | Assess the knowledge of, and interest and involvement in, PPC among Spanish pediatric neurologists | Questionnaires | Prof. | Area 1 Area 3 |
Rodríguez-Rey et al. [21] | 2019 | ENG | SPAIN (Madrid, Basque Country, Murcia, Asturias, Castile-Leon) | Explore the prevalence of burnout syndrome (BOS) and post-traumatic stress disorder (PTSD) in a sample of Spanish staff working in nine pediatric intensive care units (PICUs) and compare these rates with a sample of general pediatric staff and explore how resilience, coping strategies, and professional and demographic variables influence BOS and PTSD | Questionnaires | Prof. | Area 1 Area 2 |
Montoya-Juárez et al. [22] | 2013 | ENG | Andalusia | Determine the elements parents identify their hospitalized children as suffering, and establish observational indicators for the detection and the interpretation of suffering in children necessary for evaluation and personalized intervention by professionals | Interviews | Fam. | Area 1 Area 2 |
Tagarro García et al. [23] | 2008 | SPA | Madrid | Evaluate end-of-life care in a PICU | Questionnaires | Prof. + Fam. | Area 1 Area 2 Area 3 |
García-Salido et al. [24] | 2018 | SPA | Madrid | Understand the characteristics of the patients referred from the PICU to the PPCU during the study period | Clinical records review | Pat. | Area 1 Area 2 Area 3 |
Plaza Fornieles et al. [25] | 2020 | SPA | Murcia | Evaluate whether PPC team interventions improve end-of-life care, according to parents’ experiences and degrees of satisfaction with the care received | Questionnaires | Fam. | Area 1 Area 2 Area 3 |
Montoya-Juárez et al. [26] | 2012 | SPA | Andalusia | Determine, through the discourse of parents and professionals, the signs of suffering evidenced by ill pediatric inpatients and establish observational indicators | Interviews | Prof. + Fam. | Area 1 Area 2 |
Caballero Pérez et al. [27] | 2018 | SPA | SPAIN (all regions except Castile-Leon) | Assess the impact of the availability of specialized PPCUs in the management of children eligible for palliative care by their Primary Care pediatricians | Questionnaires | Prof. | Area 1 Area 3 |
Morán Roldán and García-Mauriño [28] | 2021 | SPA | Madrid | Analyze the current and global situation of PPC in the area of Primary Care in the Community of Madrid from the point of view of the PC pediatricians themselves | Questionnaires | Prof. | Area 1 |
Gutiérrez Rada and Ciprés Roig [29] | 2020 | SPA | Catalonia | Explore the experiences of referring professionals of patients who died while being treated by a PPCU | Interviews | Prof. | Area 1 Area 3 |
Martino Alba et al. [30] | 2007 | SPA | SPAIN (regions not indicated) | Determine how often pediatric intensivists have to manage dying patients, their approach to these patients, their knowledge of this field, and their needs | Questionnaires | Prof. | Area 1 Area 2 Area 3 |
Moya-Dionisio [31] | 2020 | SPA | Asturias | Understand and assess the experiences of and knowledge among Primary Care pediatricians about PPC in the Principality of Asturias (Spain) | Questionnaires | Prof. | Area 1 Area 3 |
Pérez-Ardanaz et al. [32] | 2019 | ENG | Andalusia | Analyze the use of health services for children with severe chronic diseases, seeking to identify patterns of use according to sociodemographic and clinical conditions, and identify unmet needs of care coordination that could benefit from nursing case management services | Clinical records review and questionnaires | Pat. + Fam. | Area 1 |
Astray San Martín [33] | 2010 | SPA | Madrid | Assess the knowledge among Primary Care pediatricians in Area 5 of Madrid of PPC and their possible involvement in it | Questionnaires | Prof. | Area 1 Area 3 |
García-Salido et al. [34] | 2015 | ENG | Madrid | Describe the clinical evolution and needs of children with spinal muscular atrophy type I treated in a domiciliary palliative care program | Clinical records review | Pat. | Area 1 Area 3 |
De Noriega et al. [35] | 2022a | ENG | Madrid | Describe the characteristics of cancer patients and healthcare delivered by a PPCU with a home hospitalization program | Clinical records review | Pat. | Area 1 Area 3 |
De Noriega et al. [36] | 2022b | ENG | Madrid | Describe the attention provided by a PPC team to patients with CNS cancer and the differences in care compared to patients who did not receive PPC | Clinical records review | Pat. | Area 1 Area 2 Area 3 |
Bobillo-Pérez et al. [37] | 2020 | ENG | Catalonia | Describe how end-of-life care is managed when life-support limitation is decided in a PICU and analyze the influence of the further development of the Palliative Care Unit | Clinical records review | Pat. | Area 1 Area 3 |
Bosquet-del Moral et al. [38] | 2012 | SPA | Andalusia | Determine the experiences of grieving in mothers who suffered the loss of their child after a cancer disease process | Interviews | Fam. | Area 1 Area 2 Area 3 |
Fernández Navarro et al. [39] | 2000 | SPA | Valencia | Presentation of the care activity carried out in the first 17 months of operation of the home hospitalization program of the La Fe Children’s University Hospital in Valencia | Clinical records review | Pat. | Area 1 Area 2 Area 3 |
Tagarro García and Ruza Tarrió [40] | 2008 | SPA | Madrid | Understand in depth parental perceptions of potential improvements relating to end-of-life care in the PICU | Interviews | Fam. | Area 1 Area 3 |
García Caballero et al. [41] | 2020 | SPA | SPAIN (regions not indicated) | Ascertain whether internists know what limitation of therapeutic effort (LTE) means and whether training in palliative care affects this understanding | Questionnaires | Prof. | Area 1 |
Lledó-Morera and Bosch-Alcaraz [42] | 2021 | ENG | Catalonia | Evaluate how nurses cope with the death of a pediatric patient, relate it to the different sociodemographic variables, and describe personal coping strategies used by nurses in managing the process and accepting the death of the patient | Questionnaires | Prof. | Area 1 Area 2 |
González-Gil et al. [43] | 2021 | ENG | Madrid | Explore nurses’ experiences related to promoting the visits of siblings to the PICU | Interviews | Prof. | Area 1 Area 2 Area 3 |
Mota Vargas et al. [44] | 2016 | ENG | Extremadura | Analyze the professional trajectory of palliative care workers over time and the factors which influence this trajectory | Interviews | Prof. | Area 1 Area 2 |
González-Gil [45] | 2008 | SPA | Madrid | Analyze the conceptualization nurses have of child death in a PICU and identify sociocultural strategies for coping with it | Interviews and participant observation | Prof. | Area 1 Area 2 |
García-Salido et al. [46] | 2016 | SPA | SPAIN (regions not indicated) | Primary objective: describe the management and monitorization of critically ill pediatric hemato-oncology patients (CIPHOs) in the Spanish PICU. Secondary objective: through a literature review, identify possible areas of improvement | Questionnaires | Prof. | Area 1 Area 3 |
Casanueva-Mateos et al. [47] | 2007 | SPA | Madrid | Gain greater insight into the experiences of the parents of children admitted to the PICU and of the health workers in these units | Focus groups | Fam. + Prof. | Area 1 Area 2 Area 3 |
Rico-Mena et al. [48] | 2023 | ENG | Madrid | Describe the feelings and emotions of professionals working in an interdisciplinary pediatric palliative home care team | Interviews and field notes | Prof. | Area 1 Area 2 Area 3 |
Peláez-Cantero et al. [49] | 2023 | ENG | SPAIN (Catalonia, Madrid, Andalusia, Balearic Islands, Basque Country, Aragon, Murcia, Castile-La Mancha, Valencia, and Canary Islands | Analyze the characteristics of patients who die in the care of specific PPC teams | Clinical records review and questionnaires | Pat. | Area 1 Area 2 Area 3 |
Pascual-Fernández [50] | 2014 | SPA | Madrid | Describe the aspects of information offered to relatives of patients in the end-of-life process in Intensive Care Units (ICUs), determine nursing evaluation in this process, and evaluate professionals’ attitude on this subject | Questionnaires | Prof. | Area 2 Area 3 |
Hernández Núñez-Polo et al. [51] | 2008 | SPA | Madrid | Analyze the information that children with terminal cancer have, as well as the degree of communication between parents and children about death, and describe the variables that can influence the patient’s information | Clinical records review | Pat. | Area 2 |
Pérez-Ardanaz et al. [52] | 2022 | ENG | SPAIN (regions not indicated) | Determine the quality of working life among different pediatric nursing professionals, taking into account sociodemographic and work context factors, and the relationships of burnout, compassion satisfaction, and compassion fatigue between different job positions | Questionnaires | Prof. | Area 2 |
Rico-Mena et al. [53] | 2019 | ENG | Madrid | Explore parents’ experiences regarding the implementation of a physical rehabilitation program in PPC | Interviews | Fam. | Area 2 |
Agra Tuñas et al. [54] | 2019 | SPA | SPAIN (regions not indicated) | Describe the different types of child deaths in the PICU in Spain, and analyze the characteristics of those dying from an LTE | Clinical records review | Pat. | Area 3 |
Aspect | Key Findings | |
---|---|---|
Structure and Process of Care | Professional Training | Lack of training identified in areas like opioid use, pain management, emotional management, and communication |
Interdisciplinary Teams | Emphasis on the need for diverse teams and team meetings for better quality care | |
Care Environment | Concerns about restricted visits, lack of privacy, and a call for dedicated spaces for PPC | |
Resource Availability | Studies indicate a potential lack of sufficient resources for this segment of the population | |
Psychological Aspects of Care | Bereavement Support | Families, professionals, and patients express the need for attention and support, both during and after bereavement |
Emotional Care for Care Team | Professionals emphasize the importance of emotional support, coping strategies, and stress relief in preventing burnout | |
Psychological Care for Families | Demand for greater referral to psychological care throughout the entire care process, addressing family conflicts and more | |
Preferences Regarding Death Discussions | Varied opinions on discussing death with children or adolescents | |
Recognition of Psychological Problems | Anxiety, stress, helplessness, and other psychological problems were commonly mentioned by families and professionals | |
Caring for the Patient Approaching the End of Life | Patient Preferences | Patients value being informed about signs, discussing impending death, maintaining contact with the care team, and post-death care |
Family Preferences | Families emphasize post-death care, communication of signs and symptoms, preserving memories, and the importance of saying goodbye | |
Professional Perspective | Professionals agree on the importance of communicating signs and symptoms, discussing imminent death, being present at the time of death, and providing post-death care | |
Place of Death | Varied opinions on the best place to pass away | |
Ethical Considerations Targeting the Children | Adapt information to the child’s comprehension, respecting rights and wishes (always considering the child’s ability to express preferences) | |
Saying Goodbye and Accompaniment | Universally recognized as crucial by families, patients, and professionals |
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© 2023 by the authors. Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license (https://creativecommons.org/licenses/by/4.0/).
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Ruiz-Gil, T.; Ródenas-Rigla, F. Quality of Care in Pediatric Palliative Care: A Scoping Review. Children 2023, 10, 1922. https://doi.org/10.3390/children10121922
Ruiz-Gil T, Ródenas-Rigla F. Quality of Care in Pediatric Palliative Care: A Scoping Review. Children. 2023; 10(12):1922. https://doi.org/10.3390/children10121922
Chicago/Turabian StyleRuiz-Gil, Tania, and Francisco Ródenas-Rigla. 2023. "Quality of Care in Pediatric Palliative Care: A Scoping Review" Children 10, no. 12: 1922. https://doi.org/10.3390/children10121922