This study describes an intervention where relatives were invited to take part in a support group programme during the late palliative phase of their family member. The purpose was to describe their experiences of the support group programme and the subsequent impact on their lives as relatives of a terminally ill person. Qualitative interviews were chosen as the data collection method. The analysis was inspired by the phenomenological method as described by Giorgi (1989). The relatives' experiences were categorised into six key constituents: confirmation; insight into the gravity of the illness; sense of belonging created by similar experiences; participation in the care system; being able to rest; and strength to provide support for the patient. These six constituents resulted in a sense of safety in relation to the patient, the illness, the nursing staff and the care unit. The study's findings show that interventions of this kind may be integral to the relatives' ability to handle their situation when caring for a terminally ill family member.

BACKGROUND: Health care systems in many countries are moving towards outpatient care in which family members are central in providing care for patients with life-threatening illness. Several studies show that family members report a lack of preparation, knowledge and the ability to handle the caregiver role, and a need for information and psychosocial support. 

AIM: The aim was to investigate the effects of a support group programme for family members of patients with life-threatening illness during ongoing palliative care.

DESIGN: A prospective quasi-experimental design, including an intervention group and a comparison group, was used.

SETTINGS/PARTICIPANTS: A support group programme was offered to family members during ongoing palliative care at three intervention settings: two specialist palliative care units and one haematology unit. A fourth setting, a specialist palliative care unit, was used for comparisons.

RESULTS: Family members taking part in the support group programme significantly increased their perceptions of preparedness for caregiving, competence for caregiving, and rewards of caregiving. Hope, anxiety, depression symptoms and health showed no significant changes.

CONCLUSIONS: The intervention, including a support group programme delivered to family members of patients with life-threatening illness during ongoing palliative care, proved to be effective in certain domains of caregiving. No negative outcomes were detected. The results indicate that this intervention could be implemented and delivered to family members during ongoing palliative care.

BACKGROUND: Family members often take on many caring responsibilities, with complex issues and challenges to consider. Feelings of preparedness, competence and reward are identified as concepts that may protect caregiver wellbeing and decrease negative outcomes related to caregiving.

AIM: This study aimed to translate, adapt and psychometrically evaluate the Preparedness for Caregiving Scale, Caregiver Competence Scale and Rewards of Caregiving Scale in Swedish family members of patients with life threatening illness.

DESIGN: Correlational.

SETTING/PARTICIPANTS: The study took place in four settings including advanced palliative care. The scales were tested in a sample of 125 family members of persons with life-threatening illness. All three scales were tested in relation to distribution of item and scale scores, missing data patterns, dimensionality, convergent validity and reliability.

RESULTS: The results in this study indicate that the Swedish versions of The Preparedness for Caregiving Scale, Caregiver Competence Scale and Rewards of Caregiving Scale are valid, reliable and user-friendly scales. Confirmatory factor analysis showed that the scales were unidimensional and all demonstrated Cronbach's alpha values of ≥0.9.

CONCLUSIONS: As a result of this study it is anticipated that the Preparedness for Caregiving Scale, Caregiver Competence Scale and Rewards of Caregiving Scale could provide a basis for collaborative research between different countries and make international studies more comparable and generalizable despite differences in language and culture.