RESUMO
Due to social, political, and demographic developments in Dutch healthcare, the pressure on informal carers of vulnerable, senior citizens living at home continues to increase. To relieve this pressure, people in the senior citizens' social network are looking for ways to share care tasks with others. However, many informal caregivers seem to experience a threshold in this respect. This pilot study focuses on understanding the considerations involved in sharing caregiving tasks with others. Therefore, semi-structured interviews were conducted with six informal caregivers of single, senior citizens living at home. This study shows that these considerations are characterised by a relationship between informal caregivers' workload, their shyness to ask others for help, and the perception of care recipients' demand, combined with informal caregivers' natural inclination to do it themselves. Feelings of being responsible for the care and behaviour of care recipients, and the choices that must be made for them seem to play an additional role. To develop adequate solutions that lead to sharing informal care with others, and relieving the pressure on informal caregivers, more insight into the (personal) mechanisms behind this sense of responsibility seems necessary.
Assuntos
Cuidadores , Assistência ao Paciente , Humanos , Projetos Piloto , Atenção à Saúde , EmoçõesRESUMO
Quality of life (QoL) is an important outcome measure in mental health care. Currently, QoL is mainly measured with paper and pencil questionnaires. To contribute to the evaluation of treatment, and to enhance substantiated policy decisions in the allocation of resources, a web-based, personalized, patient-friendly and easy to administer QoL instrument has been developed: the QoL-ME. While human values play a significant role in shaping future use practices of technologies, it is important to anticipate on them during the design of the QoL-instrument. The value sensitive design (VSD) approach offers a theory and method for addressing these values in a systematic and principled manner in the design of technologies. While the VSD approach has been applied in the field of somatic care, we extended the VSD approach to the field of mental healthcare with the aim to enable developers of the QoL-instrument to reflect on important human values and anticipate potential value conflicts in its design. We therefore explored how VSD can be used by investigating the human values that are relevant for the design of the QoL-ME. Our exploration reveals that the values autonomy, efficiency, empowerment, universal usability, privacy, redifinition of roles, (redistribution) of responsibilites, reliability, solidarity, surveillance and trust are at stake for the future users of the technology. However, we argue that theoretical reflections on the potential ethical impact of a technology in the design phase can only go so far. To be able to comprehensively evaluate the usability the VSD approach, a supplementary study of the use practices of the technology is needed.
