Public preferences and priorities for end-of-life care in Kenya:a population-based street survey

BACKGROUND: End-of-life care needs are great in Africa due to the burden of disease. This study aimed to explore public preferences and priorities for end-of-life care in Nairobi, Kenya. METHODS: Population-based street survey of Kenyans aged ≥18; researchers approached every 10th person, alternating men and women. Structured interviews investigated quality vs. quantity of life, care priorities, preferences for information, decision-making, place of death (most and least favourite) and focus of care in a hypothetical scenario of serious illness with <1 year to live. Descriptive analysis examined variations. RESULTS: 201 individuals were interviewed (100 women) representing 17 tribes (n = 90 44.8%, Kikuyu). 56.7% (n = 114) said they would always like to be told if they had limited time left. The majority (n = 121, 61.4%) preferred quality of life over quantity i.e. extending life (n = 47, 23.9%). Keeping a positive attitude and ensuring relatives/friends were not worried were prioritised above having pain/discomfort relieved. The three most concerning problems were pain (45.8%), family burden (34.8%) and personal psychological distress (29.8%). Home was both the most (51.1% n = 98) and least (23.7% n = 44) preferred place of death. CONCLUSION: This first population-based survey on preferences and priorities for end-of-life care in Africa revealed that psycho-social domains were of greatest importance to the public, but also identified variations that require further exploration. If citizens’ preferences and priorities are to be met, the development of end-of-life care services to deliver preferences in Kenya should ensure an holistic model of palliative care responsive to individual preferences across care settings including at home

Relatives in end-of-life care – part 1: a systematic review of the literature the five last years, January 1999–February 2004

Aim. To review systematically research conducted during the past five years focusing on the relatives’ situation and needs in end‐of‐life care. Background and aim. That relatives make a large contribution in the care of the dying is well‐known. In this situation, relatives often have to solve many new practical problems in the care as well as dealing with the sorrow of both themselves and the dying person. In recent years, palliative care has been developed in many countries and many new studies have been carried out. Methods. A systematic search of the literature was performed in the CINAHL and Medline databases. Of the 94 papers analysed, there were 59 qualitative and 35 quantitative studies with differing designs. The studies were carried out in 11 countries and were published in 34 different journals. Results. The results were categorized in two main themes with several subthemes: (1) being a close relative – the situation: (i) exposed position – new responsibility, (ii) balance between burden and capacity and (iii) positive values; (2) being a close relative – needs: (i) good patient care, (ii) being present, (iii) knowing and communicating and (iv) support from and trusting relationship with the professional. The relative's feelings of security and trust in the professional were found to be of great importance. Conclusion. More than twice as many studies had a descriptive/explorative design, which is of importance in the assessment of evidence. However, different studies complement one another and in summary, it can be said that analytic evidence is unequivocal: good patient care, communication, information and the attitude of the professional are of decisive importance regarding relatives' situation. These results are also in accord with earlier review studies. Relevance to clinical practice. Staff members have a great deal of responsibility for assuring that the patient feels as good as possible, facilitating relatives’ involvement based on the family's wishes and limiting the stress and difficulties experienced by the family. The results showed that the relative's satisfaction could depend on the attitude of the professional as well as on good communication, good listening and good information. This can also be viewed as a prerequisite for the professional to get to know the family and to provide ‘care in the light’

Economic and social changes among distressed family caregivers of lung cancer patients

PURPOSE: Although costs of lung cancer care have been documented, economic and social changes among lung cancer patients’ family caregivers have yet to be fully examined. In addition, research has not focused on caregivers with greater need for support services. This study examined various economic and social changes among distressed family caregivers of lung cancer patients during the initial months of cancer care in the United States. METHODS: Lung cancer patients’ primary family caregivers with significant anxiety or depressive symptoms were recruited from three medical centers within 12 weeks of the patient’s new oncology visit. Caregivers (N=83) reported demographic and medical information and caregiving burden at baseline. Seventy-four caregivers reported anxiety and depressive symptoms and economic and social changes three months later. RESULTS: Seventy-four percent of distressed caregivers experienced one or more adverse economic or social changes since the patient’s illness. Common changes included caregivers’ disengagement from most social and leisure activities (56%) and, among employed caregivers (n=49), reduced hours of work (45%). In 18% of cases, a family member quit work or made another major lifestyle change due to caregiving. Additionally, 28% of caregivers reported losing the main source of family income, and 18% reported losing most or all of the family savings. Loss of the main source of family income and disengagement from most social and leisure activities predicted greater caregiver distress. CONCLUSIONS: Findings suggest that distressed caregivers of lung cancer patients experience high rates of adverse economic and social changes that warrant clinical and research attention