Can a single question about family members sense of security during palliative care predict their well-being during bereavement? A longitudinal study during ongoing care and one year after the patients death

BackgroundIt has been recognised that more evidence about important aspects of family members sense of security during palliative care is needed. The objectives of the study was: i) to discover what variables are associated with family members feeling secure during palliative care; ii) to develop a model of family members sense of security during palliative care, and iii) to evaluate if family members sense of security during ongoing palliative care predicts well-being during bereavement.MethodsBetween September 2009 and October 2010, 227 family members (of patients admitted to six Swedish palliative home care units) participated in the study (participation rate 75%) during ongoing care and 158 participated also 1 year after the patients death (70%). They answered a single question regarding the family members sense of security during the palliative care period. The question was constructed and validated by the researchers. Data were also collected using other questions and validated instruments and analysed stepwise with Generalized Linear Models (ordinal multinomial distribution and logit link).ResultsSixteen variables were positively related to family members sense of security during ongoing palliative care. The five variables with the highest importance were selected into the model (listed in decreasing importance): Family members mastery; nervousness and stress; self-efficacy; patient having gynaecological cancer; family members perceived quality of life. Moreover, the family members sense of security during ongoing palliative care predicted ten variables indicating their well-being 1 year after the patients death, e.g. psychological well-being, complicated grief symptoms, health related quality of life.ConclusionsThe findings reveal possibilities to identify family members at risk of negative adjustment to bereavement in clinical practice and may help to develop interventions to support family members during ongoing palliative care.Funding Agencies|Medical Research Council of Southeast Sweden [LIO-126821]; Swedish Society of Medicine [2008-21732]; FAS (Swedish Council for Working Life and Social Research) [2006-1621]; County Council in Ostergotland, Sweden [FORSS-147851]; Konung Gustaf V: s och Drottning Victorias Frimurarestiftelse [104821]