Factorial structure of quality of life, satisfaction with caregiving and caregiver burden in palliative care: A systematic review.

AIM: The aim of this research is to identify the main approaches and domains of palliative care quality assessment through three questionnaires used for this purpose. DESIGN: Systematic review. METHODS: The proposed analysis process consists of three stages from 2000 to 2020: (i) massive literature search, (ii) text mining and (iii) systematic reviews carried out on the QLQ C30, Zarit Burden Interview and FAMCARE questionnaires. The Preferred Reporting Items for Systematic Reviews (PRISMA-P) have guided our research. RESULTS: Sixteen papers were included in our study. The main findings have been summarised using a descriptive narrative synthesis approach. Systematic reviews evidenced that such tools present variable factor structures or latent domains. The results obtained are generally representative of the evidence supporting the factor structure of the QLQ-C30 in the general cancer population. The factor structure of the Zarit Burden Interview remains ambiguous, although the idea of a unifactorial structure predominates. In the case of FAMCARE, most of the factor structures differ from the initial proposal of Kristjanson. The categorisation of the main subjective assessment approaches could be useful for the construction of a coherent system of indicators to be used in nursing practice. For its part, the variability in the latent dimensionality of the questionnaires analysed could be due to: (i) the characteristics of the sample, (ii) the population studied, (iii) cross-cultural variability, (iv) the design of the questionnaire and (v) the analysis techniques employed.

Enhancing the Adult and Paediatric Palliative Care System: Spanish Professionals' and Family Caregivers' Suggestions for Comprehensive Improvement.

This research critically explores deficiencies in the palliative care system, focusing on evaluation and treatment aspects for both adult and paediatric patients. Using a qualitative methodology, the study engages healthcare professionals and family caregivers to uncover perspectives on the existing state of palliative care. Conducted through three focus groups and a semi-structured in-depth interview with participants recruited from Virgen de la Arrixaca University Clinical Hospital, this research illustrates critical issues, highlighting the insufficient healthcare workforce and resources to meet the comprehensive needs of patients and their families. Recommendations include holistic care addressing social, emotional, psychological, socio-familiar, and economic dimensions, supported by embedded support groups and the enforcement of relationships with palliative associations. This study also advocates for improved health institutional coordination, social worker support, and ongoing health professional satisfaction monitoring. In paediatric care, specific demands involve specialised units, medical team continuity, 24 h paediatrician care, and a more professional paediatric approach. Beyond problem identification, this study offers valuable insights for shaping health policies and tools, incorporating new indicators and introducing grief bereavement support in clinical reports, contributing to the advancement of patient evaluation in palliative care.

The Experiences and Views on Palliative Care of Older People with Multimorbidities, Their Family Caregivers and Professionals in a Spanish Hospital.

The increasing prevalence of complex chronic diseases in the population over 65 years of age is causing a major impact on health systems. This study aims to explore the needs and preferences of the multimorbid patient and carers to improve the palliative care received. The perspective of professionals who work with this profile of patients was also taken into account. A qualitative study was conducted using semi-structured interviews with open-ended questions. Separate topic guides were developed for patients, careers and health professionals. We included 12 patients, 11 caregivers and 16 health professionals in Spain. The results showed multiple unmet needs of patients and families/caregivers, including feelings of uncertainty, a sense of fear, low awareness and knowledge about palliative care in non-malignant settings, and a desire to improve physical, psychosocial and financial status. A consistent lack of specialized psychosocial care for both patients and caregivers was expressed and professionals highlighted the need for holistic needs assessment and effective and early referral pathways to palliative care. There is a lack of institutional support for multimorbid older patients in need of palliative care and important barriers need to be addressed by health systems to face the significant increase in these patients.

Palliative Care in Older People with Multimorbidities: A Scoping Review on the Palliative Care Needs of Patients, Carers, and Health Professionals.

Although numerous studies have been conducted previously on the needs of cancer patients at the end of their life, there is a lack of studies focused on older patients with non-oncological complex chronic multipathologies. Examining these needs would help to gain a greater understanding of the profile of this specific population within the palliative care (PC) pathway and how the health and care systems can address them. The aim of this review was to identify the needs influencing PC among older patients with multimorbidities, their relatives or informal caregivers, and the health professionals who provide care for these patients. A scoping literature review guided by the Systematic Reviews and Meta-Analyses extension for Scoping Reviews (PRISMA-ScR) checklist was carried out with literature searched in the Medline, Embase, CINAHL, WoS, Cochrane Library, PsycINFO, and Scopus databases from 2009 to 2022. Eighty-one studies were included, demonstrating a great variety of unaddressed needs for PC among chronic older patients and the complexity in detecting those needs and how to refer them to PC pathways. This review also suggested a scarcity of tools and limited pathways for professionals to satisfy their needs for these patients and their families, who often felt ignored by the system. Substantial changes will be needed in health and care systems at the institutional level, providing more specialized PC environments and systematizing PC processes.