Information and communication technology as a tool for support in home care : Experiences of middle-aged people with serious chronic illness and district nurses

Abstract: The overall aim of this doctoral thesis was to elucidate experienced needs of people with serious chronic illness living at home and the use of information and communication technology (ICT) as a tool for support from district nurses (DNs).The doctoral thesis included five Papers; a systematic literature review, which comprised both qualitative and quantitative studies, and four Papers with qualitative approach. The literature review (I) provides an overview of studies describing the use of ICT in home care, and included 130 studies. These studies were examined for a quality appraisal, and were then extracted and placed in a matrix of different areas. Paper II elucidates meanings of needs of middle-aged people living with serious chronic illness living at home. Twelve people with serious chronic illness living at home were interviewed. The interviews were analysed with a phenomenological hermeneutic interpretation. Paper IV describes DNs attitudes regarding the implementation of ICT in home care. Data were collected by using focus group discussions with 19 DNs, analysed with content analyses. An intervention study with a qualitative case study design was performed (III, V). Semi-structured interviews were performed, with two people with serious chronic illness living at home and their respective DN, for describing their experiences of using an ICT application for communicating with each other. Data were then analysed with thematic content analysis.Findings in the literature review (Paper I) show that the last ten years published studies of using ICT in care at home have rapidly increased. About a half of the studies included in the literature review were published between 2007 and 2009. The most of the studies were performed in North America and about one third in Europe. Many different terms for the technology were used; telehealth was the most common. Studies of supporting people with chronic illness were common. Heart and lung diseases were the most common diagnoses. Videophones or video conferencing was the most commonly used technology, with focus of communication between nurses and patients.Findings in Paper II show that needs of people with serious chronic illness living at home can be understood as maintaining control in everyday life provides meaningfulness in life. This means striving for independence through care and support in their surroundings. It seemed also important for participants to choose how their lives would be and be together with others who listened and understood them for who they are.Findings in Paper IV show the importance that DNs could influence the design and be a part of the introduction of ICT applications implementation in home care. DNs viewed that the use of ICT in home care could improve accessibility both for themselves and for the ill people at home. DNs thought they could gain better access to information about ill people living at home, and that it could save time, but also take time. They also discussed that the ICT application encroached the autonomy of the ill people and their relatives’ living at home. Furthermore, they discussed using ICT in home care was not suitable for everyone, and that people cannot be replaced by ICT.Findings in the intervention study (Paper III, V) describe that using the ICT application improved accessibility to care at home. It also saved time and eased DNs’ work. The messaging program provided a more direct communication between the ill people and the DNs, which facilitated the communication, and led to less limitations of everyday life for the ill people living at home, which seemed mediating a more trusting relationship.Keywords: information and communication technology, chronic illness, home, experiences, qualitative research.