Can a single question about family members\u2019 sense of security during palliative care predict their well-being during bereavement? A longitudinal study during ongoing care and one year after the patient\u2019s death

Anna Milberg,Barbro Krevers,Maria Liljeroos

doi:10.1186/s12904-019-0446-1

Abstract

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 patient’s 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 patient’s 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.

Highlights

It has been recognised that more evidence about important aspects of family members’ sense of security during palliative care is needed
Family members’ sense of security during palliative care has been recognised as valuable and research suggesting that such a sense may be facilitated by professionals in palliative care, we have only identified one published study applying a quantitative design and with focus on variables associated with family members being secure/less secure
We hypothesised that the family members’ sense of security in palliative care would be related to the family members’ well-being during bereavement in terms of their health-related quality of life, stress and coping, psychological well-being and complicated grief symptoms. The reason for these hypotheses was that previous longitudinal studies of bereaved family members have indicated that well-being post-loss can be assessed in terms of health-related quality of life [16], psychological well-being [15, 16], stress [17, 18], and complicated grief symptoms [19]. Design This questionnaire study had two different types of data collection: i) data collected during ongoing palliative care; ii) data collected during bereavement

Summary

Introduction

It has been recognised that more evidence about important aspects of family members’ sense of security during palliative care is needed. For family caregivers’, it provides security to know that healthcare will be provided when needed by competent professionals and it is of crucial importance, for those, such as palliative family caregivers, that are already in situations that create a fundamental sense of insecurity. Research has indicated that family members’ sense of security can be facilitated in palliative care, e.g. by the acquisition of adequate knowledge about palliative care and possible symptom management, by ensuring the availability of competent professionals with an attitude of open-mindedness, open-heartedness, and a team sensitivity and flexibility in meeting both patients’ and families’ needs [3, 5,6,7,8,9,10,11]. The importance of family caregivers feeling secure in their own identity and self-worth as caregivers and individuals have been stressed [12]

Methods

Results

Conclusion