This paper highlights key opportunities for technology design for informal caregivers who provide long-term in-home care. For this purpose, a study with informal caregivers was conducted, including interviews (N=4) and online questionnaires (N=34) based on holistic analysis of supportive technologies. These investigations provide a deeper understanding of the key opportunities in the design of technologies to support the caregiver, namely (1) making caregivers better informed and more aware of existing solutions (2) increasing awareness of the caregivers' own wellness; (3) cherishing the valuable, positive moments of caregiving (e.g. by capturing precious moments) and (4) encouraging meaningful social interactions among caregivers for strengthening social ties.
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.
ObjectiveIn this Lesson from the Field, we examine changes in the burden experienced by caregivers of persons who experience homelessness associated with lack employment, employability or education, and mental health challenges when the care recipient receives support from an outreach professional known as a social street worker (herein identified as worker). In addition, we focus on caregivers' perception of change in the quality of their relationship with the person for whom they care and whether the caregivers receive support from the worker.BackgroundIn the Netherlands, due to the transformation toward a participation society, persons living in compromised circumstances must increasingly rely on caregivers for support and shelter instead of relying on services, such as support from social community teams.MethodsWorkers provided by a Dutch organization covering the northwest of the Netherlands gained the consent of their clients to contact the clients' caregivers. Caregivers were invited to participate in the research and completed consent. A total of 111 caregivers of persons receiving support from workers completed surveys.ResultsCaregivers who had more contact with the worker worried less about the person for whom they provided care. No changes were found regarding tension between caregivers and the person for whom they cared. Most caregivers (73%) perceived positive changes in the quality of the relationship with the person for whom they provided care, and 52% received support from the worker.ConclusionMost carers did not perceive changes in their burden, but did perceived positive changes in the quality of the relationship with the person for whom they cared and received support themselves.ImplicationsOur study underpins the need to recognize the caregiver's burden of caregivers who support marginalized people, to connect with these caregivers, and to support them.
