Search

Background: Spiritual distress is prevalent in advanced disease, but often neglected, resulting in unnecessary suffering. Evidence to inform spiritual care practices in palliative care is limited., Aim: To explore spiritual care needs, experiences, preferences and research priorities in an international sample of patients with life-limiting disease and family caregivers., Design: Focus group study., Setting/participants: Separate patient and caregiver focus groups were conducted at 11 sites in South Africa, Kenya, South Korea, the United States, Canada, the United Kingdom, Belgium, Finland and Poland. Discussions were transcribed, translated into English and analysed thematically., Results: A total of 74 patients participated: median age 62 years; 53 had cancer; 48 were women. In total, 71 caregivers participated: median age 61 years; 56 were women. Two-thirds of participants were Christian. Five themes are described: patients' and caregivers' spiritual concerns, understanding of spirituality and its role in illness, views and experiences of spiritual care, preferences regarding spiritual care, and research priorities. Participants reported wide-ranging spiritual concerns spanning existential, psychological, religious and social domains. Spirituality supported coping, but could also result in framing illness as punishment. Participants emphasised the need for staff competence in spiritual care. Spiritual care was reportedly lacking, primarily due to staff members' de-prioritisation and lack of time. Patients' research priorities included understanding the qualities of human connectedness and fostering these skills in staff. Caregivers' priorities included staff training, assessment, studying impact, and caregiver's spiritual care needs., Conclusion: To meet patient and caregiver preferences, healthcare providers should be able to address their spiritual concerns. Findings should inform patient- and caregiver-centred spiritual care provision, education and research.

Background: Despite a high incidence of life-limiting disease, there is a deficit of palliative care outcome evidence in sub-Saharan Africa. Providers of end of life care call for appropriate measurement tools. The objective is to compare four approaches to self-report pain and symptom measurement among African palliative care patients completing the African Palliative Care Association African Palliative Outcome Scale (APCA African POS)., Methods: Patients were recruited from five services (4 in South Africa and 1 in Uganda). Research nurses cross-sectionally administered POS pain and symptom items in local languages. Both questions were scored from 0 to 5 using 4 methods: verbal rating, demonstrating the score using the hand (H), selecting a face on a visual scale (F), and indicating a point on the Jerrycan visual scale (J). H, F and J scores were correlated with verbal scores as reference using Spearman's rank and weighted Kappa. A Receiver Operating Characteristic (ROC) analysis was performed., Results: 315 patients participated (mean age 43.5 years, 69.8% female), 71.1% were HIV positive and 35.6% had cancer, 49.2% lived in rural areas. Spearman's rank correlations for pain scores were: H: 0.879, F: 0.823, J: 0.728 (all p < 0.001); for symptoms H: 0.876, F: 0.808, J: 0.721 (all p < 0.001). Weighted Kappa for pain was H: 0.798, F: 0.719 J: 0.548 and for symptoms: H: 0.818, F: 0.718, J: 0.571. There was lower agreement between verbal and both hand and face scoring methods in the Ugandan sample. Compared to the verbal scale the accuracy of predicting high pain/symptoms was H > F > J (0.96-0.89) in ROC analysis., Conclusions: Hands and faces scoring methods correlate highly with verbal scoring. The Jerrycan method had only moderate weighted Kappa. POS scores can be reliably measured using hand or face score.

Background: Quality of life (QOL) is a core outcome of palliative care, yet in African settings there is a lack of evidence on patients' levels of QOL. We aimed to describe QOL among patients with incurable, progressive disease receiving palliative care in South Africa and Uganda, to compare QOL in cancer and HIV, to determine how domains of QOL correlate with overall QOL, and compare levels of QOL in this population with those in other studies using the same tool., Methods: A cross-sectional survey was conducted using the Missoula Vitas Quality of Life Index (MVQOLI), a 26-item QOL questionnaire with five subscales (Function, Symptom, Interpersonal, Well being, Transcendent) covering physical, social, psychological and spiritual domains and one global QOL item. One item in each subscale assesses the subjective importance of the domain on a score from 1 (least important) to 5 (most important), used to weight the contribution of the subscale towards the Total QOL score. The tool was translated into 6 languages and administered to consecutively recruited patients at four facilities in South Africa and one in Uganda., Results: 285 patients were recruited, with a mean age of 40.1; 197 (69.1%) were female. Patients' primary diagnoses were HIV (80.7%), cancer (17.9%) and other conditions (1.4%). The mean global QOL score was 2.81 (possible range 0 (worst) to 5 (best)); mean Total score 17.32 (possible range 0 to 30). Patients scored most poorly on Function (mean 0.21), followed by Well being (2.59), Symptoms (5.38), Transcendent (5.50), Interpersonal (9.53) (possible range for subscale scores -30 to 30). Most important to patients were: close relationships (mean 4.13), feeling at peace (4.12), sense of meaning in life (4.10), being active (3.84), physical comfort (2.58). Cancer patients were predominantly recruited at three of the sites; hence comparison with HIV-infected patients was restricted to these sites. HIV+ patients (n = 115) scored significantly worse than cancer patients (n = 50) on Well being (Z = -2.778, p = 0.005), Transcendence (Z = -2.693, p = 0.007) and Total QOL (Z = -2.564, p = 0.01). Global QOL score was most weakly correlated with Total QOL (r = 0.37) and the Transcendent subscale was most highly correlated (r = 0.77) (both p < 0.001). Patients receiving palliative care in South Africa and Uganda exhibited significantly poorer QOL compared to similar populations in the USA., Conclusions: Feeling at peace and having a sense of meaning in life were more important to patients than being active or physical comfort, and spiritual wellbeing correlated most highly with overall QOL. It is therefore vital to identify and meet the psychological and spiritual care needs of patients, as well as to assess and treat pain and other symptoms. Our finding that patients scored most poorly on the Function domain warrants further research.