Family members' perceived needs for bereavement follow-up

Abstract

Palliative care does not end with the death of the patient, and many palliative care services offer specific follow-up services for the bereaved. The aims of this study were to quantitate perceived bereavement needs and to qualitatively describe these needs. The study design was cross-sectional and targeted family members three to nine months after the patient's death. Two hundred and forty-eight family members responded (response rate 66%) to a postal questionnaire with Likert-type and open-ended questions. The responses to the open-ended items were analyzed with manifest content analysis, and the quantitative part was analyzed with descriptive statistics. The analysis showed that about half of the family members expressed a need for bereavement follow-up. A majority favored a personal meeting, preferably in their own home, with the staff member who had had the most contact with the patient and the family. The family members wanted to talk about what had happened during the palliative phase (e.g., if the patient had suffered or not), and also about their present situation, their feelings of loneliness, and the future. The follow-up procedure made the family member experience a feeling of being recognized as a person with their own needs and was also valuable with regard to the family members' feelings of guilt. The findings are discussed in relation to narrative theory, meaning-based coping, and the dual process model of coping with bereavement, and designing follow-up procedures.