Caring for carers

Abstract

Background: The needs of family caregivers are not recognized or are recognized too late in the disease trajectory of patients with Chronic Heart Failure Aim : The aim of this study is to explore which factors facilitate and impede a timely recognition of palliative care needs based on the experiences of family caregivers of patients with advanced heart failure and to identify the gap between these factors and the experiences of healthcare professionals. Methods: Analysis of ten semi-structured interviews with family caregivers and two focus groups of healthcare professionals working in a hospital, are used to identify the gaps between family caregiver’s experiences with regards to facilitating and impeding factors for timely recognition and the hospital perspective. Results: Multiple factors have been identified by the family caregivers as either facilitating of impeding for a timely recognition of their needs. The lack of time, attention and education of healthcare professionals impede the timely recognition of family caregiver’s needs. The fact that patients and family caregivers vary in the amount of information they wish to receive and the fact that family caregivers have to actively search for information are also identified as impeding factors. Having the same care provider and using the right timing and setting are identified as facilitating factors for a timely recognition of palliative care needs. From the hospital perspective it became clear that the greatest gaps seem to lie in the lack of time, attention and expertise of healthcare professionals. Conclusions/recommendations: Based on the results of the current study, some directions for timely recognition of palliative care needs in family caregivers can be provided. Firstly, healthcare professionals should get more time to pay attention to the family caregivers, since both groups mentioned that the lack of time impedes them in expressing and recognizing possible needs. This attention should focus on informing the family caregivers better in family conversations, since the results show a striking need for information among family caregivers. Besides that, healthcare professionals should get more education on communication techniques regarding palliative care since they mention they find it hard to determine when and how to start conversations with family caregivers. Lastly, family caregivers should indicate with what healthcare professional they have the best care-relation, since they both mentioned the value of having a trust-relation for expressing and recognizing needs.