Informal care givers' experiences with support in primary palliative care when a case manager is involved: A descriptive study in the Netherlands

Abstract

Introduction Case managers have been introduced in primary palliative care in the Netherlands; these are nurses with expertise in palliative care who offer support to patients and informal care givers. The case manager provides support in addition to the care provided by the home care nurse and general practitioner, potentially leading to more complexities in care coordination. This study describes what informal care givers think about the number of professionals involved in primary palliative care and what support is and is not provided by the general practitioner, the community nurse and the case manager according to the informal care givers. Methods A questionnaire was filled in by the case manager upon referral, and the informal care giver ( n = 178) completed a questionnaire two months after the patient had died. Frequencies (the number of professionals) and cross tabs (for support) were calculated. Results The number of healthcare professionals involved was appropriate according to the vast majority (91%) of informal care givers. Support was provided by all three professionals, but a small proportion (14%) of informal care givers did not receive sufficient information on possibilities of care and support from any of the care providers. Discussion Reluctance to involve a case manager is unnecessary, as long as the role of each professional is explained to patients and informal care givers. At all times, support should be offered to the informal care givers as well as to the patient. Added value of the case manager is found in offering specific knowledge of palliative care.