Need for additional professional psychosocial and spiritual support in patients with advanced diseases in the course of specialist palliative care – a longitudinal observational study

Abstract

Background We investigated the need for additional professional support and associated factors in patients (pts) at initiation and in the course of in- and outpatient specialist palliative care (I-SPC/O-SPC). Methods Pts entering an urban SPC network consecutively completed questionnaires on psychosocial/spiritual problems and support needs within 72 h (T0) as well as within the first 6 weeks (T1) of SPC. Hierarchical linear regression analysis was used to investigate the impact of sociodemographic / disease-related variables, psychological / physical burden, social support, and SPC setting on the extent of support needs. Results Four hundred twenty-five pts (70 years, 48% female, 91% cancer, 67% O-SPC) answered at T0, and 167 at T1. At T0, main problems related to transportation, usual activities, and dependency (83–89%). At T1, most prevalent problems also related to transportation and usual activities and additionally to light housework (82–86%). At T0, support needs were highest for transportation, light housework, and usual activities (35–41%). Cross-sectional comparisons of SPC settings revealed higher problem scores in O-SPC compared to I-SPC at T0 (p = .039), but not at T1. Support need scores were higher in O-SPC at T0 (p < .001), but lower at T1 (p = .039). Longitudinal analyses showed a decrease of support need scores over time, independent from the SPC setting. At T0, higher distress (p = .047), anxiety/depression (p < .001), physical symptom burden (p < .001) and I-SPC (p < .001) were associated with higher support need scores (at T1: only higher distress, p = .037). Conclusion Need for additional professional psychosocial/spiritual support was identified in up to 40% of pts. with higher need at the beginning of O-SPC than of I-SPC. During SPC, this need decreased in both settings, but got lower in O-SPC than in I-SPC over time. Support need scores were not only associated with psychological, but also physical burden.

Specialist palliative care until the very end of life - reports of family caregivers and the multiprofessional team

“…The present study is part of a large prospective, longitudinal, multicenter observational protocol evaluating support needs, psychological problems and personal last wishes of patients during their inpatient and outpatient SPC in the metropolitan area of Hamburg, Germany [ 22 , 23 ]. This research mainly focused on the patient perspective.…”

“…Exclusion criteria included cognitive or language limitations, acute critical physical or psychological problems, and imminent death of patients. Additional details on the study design have been described elsewhere [ 22 , 23 ].…”

Cross-cultural adaptation of the Caring Ability Inventory and the caring ability of Polish nurses

“…A care recipient requires from the healthcare system not only an accurate diagnosis or modern treatment, they also Corresponding author: Michał Machul, Department of Holistic Care and Nursing Management, Medical University of Lublin,ul. Staszica 4/6,Poland;email: michal.machul@umlub.pl require comfort and spiritual and psychological support (Connolly & Timmins, 2021;Ullrich et al, 2021). Patients' autonomy and ability to make choices should be prioritized and guide the interaction and content of a caring relationship (Albinsson et al, 2021;Dahlberg, 2003).…”

Barriers and facilitators to multidimensional symptom management in palliative care: A focus group study among patient representatives and clinicians

“…However, during clinical consultations, patients and clinicians mostly focus on one or few symptoms only (Homsi et al 2006;Sikorskii et al 2012). In addition to physical symptoms, patients often experience psychological, social, and spiritual problems, such as anxiety, financial concerns, and fear of the unknown (Bandeali et al 2020;Ullrich et al 2021). In the conceptual framework for symptom management that is still widely accepted in the palliative care field (Chapman et al 2022), a symptom is defined as a "subjective experience reflecting changes in a person's biopsychosocial function, sensation, or cognition" (The University of California, San Francisco School of Nursing Symptom Management Faculty Group 1994; Dodd et al 2001).…”