Purpose: As recovery time after oncological surgery can be long, family caregivers often play an important role in the delivery of care after patients’ discharge. To prepare carers for this role, we developed a family involvement program (FIP) to enhance their active involvement in post-surgical oncology care during hospitalization. The purpose of this qualitative study was to explore family caregivers experience of participating in a FIP. Methods: We conducted semi-structured interviews with 12 family caregivers who participated in the family involvement program. The program is comprised of two main components (1) training and coaching of physicians and nurses; (2) active involvement of family caregivers in fundamental care activities. This active involvement included six activities. Data were analyzed using interpretative phenomenological analysis. Results: Family caregivers positively valued the program. Active participation in post-surgical care was experienced as an acceptable burden. The program gave participants the ability to simply be present (‘being there’) which was considered as essential and improved their understanding of care, although family caregivers sometimes experienced emotional moments. Active involvement strengthened existent relationship between the family caregiver and the patient. Participants thought clinical supervision. by nurses is important. Conclusions: Physical proximity appeared as an essential part of the family involvement program. It helped carers to feel they made a meaningful contribution to their loved ones’ wellbeing. Asking families to participate in fundamental care activities in post-surgical oncology care was acceptable, and not over-demanding for caregivers.
OBJECTIVE: To describe the long-term functioning of patients who survived a COVID-19-related admission to the intensive care unit and their family members, in the physical, social, mental and spiritual domain.DESIGN: A single-centre, prospective cohort study with a mixed-methods design.SETTING: The intensive care unit of the University Medical Center Groningen in the Netherlands.MAIN OUTCOME MEASURES: To study functioning 12 months after intensive care discharge several measurements were used, including a standardised list of physical problems, the Clinical Frailty Scale, the Medical Outcomes Study Short-Form General Health Survey, the McMaster Family Assessment Device, the Hospital Anxiety and Depression Scale, and the Spiritual Needs Questionnaire, as well as open questions and interviews with survivors and their family members.RESULTS: A total of 56 survivors (77%) returned the 12-month questionnaire, whose median age was 62 (inter-quartile range [IQR]: 55.0-68.0). Moreover, 67 family members (66%) returned the 12-month questionnaire, whose median age was 58 (IQR: 43-66). At least one physical problem was reported by 93% of the survivors, with 22% reporting changes in their work-status. Both survivors (84%) and their family members (85%) reported at least one spiritual need. The need to feel connected with family was the strongest. The main theme was 'returning to normal' in the interviews with survivors and 'if the patient is well, I am well' in the interviews with family members.CONCLUSIONS: One year after discharge, both COVID-19 intensive care survivors and their family members positively evaluate their health-status. Survivors experience physical impairments, and their family members' well-being is strongly impacted by the health of the survivor.
AIM: To assess the effects of family nursing conversations on family caregiver burden, patients' quality of life, family functioning and the amount of professional home health care.DESIGN: A controlled before-and-after design.METHODS: Intervention group families participated in two family nursing conversations incorporated in home health care; control group families received usual home health care. Patients and family members completed a set of questionnaires on entering the study and 6 months later to assess family caregiver burden, family functioning and patients' quality of life. The amount of home health care was extracted from patient files. Data were collected between January 2018-June 2019.RESULTS: Data of 51 patients (mean age 80; 47% male) and 61 family members (mean age 67; 38% male) were included in the results. Family caregiver burden remained stable in the intervention group whereas it increased in the control group. Family functioning improved significantly compared with the control group for patients and family members in the intervention group. No significant effects on patients' quality of life emerged. The amount of professional home health care decreased significantly in the intervention group whereas it remained equal in the control group.CONCLUSION: Family nursing conversations prevented family caregiver burden, improved family functioning, but did not affect patients' quality of life. In addition, the amount of home health care decreased following the family nursing conversations.IMPACT: Countries with ageing populations seek to reduce professional and residential care and therefore encourage family caregiving. Intensive family caregiving, however, places families at risk for caregiver burden which may lead to increased professional care and admission into residential care. This study demonstrates that family nursing conversations help nurses to prevent family caregiver burden and improve family functioning while decreasing the amount of home health care.
