Stories of a long life with HIV: A qualitative study of a narrative intervention.

BACKGROUND: The dominant story of HIV in Denmark portrays HIV as compatible with a nearly normal life. International research on the experiences of elderly people diagnosed with human immunodeficiency virus (HIV) in the 1980s to mid-1990s challenges this narrative. AIMS: To gain knowledge on the experiences of elderly long-term survivors of HIV in Denmark and to evaluate if a narrative intervention 'giving voice' to this specific group was experienced as improving their quality of life. METHODS: In collaboration with relevant stakeholders, we developed a narrative intervention at REHPA, the Danish Knowledge Centre for Rehabilitation and Palliative Care focusing on the experiences and stories of people having lived a long life with HIV. Nineteen women and men living with HIV were included in the study. The intervention's evaluation design was based on ethnographic fieldwork that included participant observation and focus group interviews. The qualitative data were analysed using thematic content analysis. RESULTS: The findings show that the dominant story on HIV does not adequately cover the experiences of elderly Danes who have lived a long life with HIV. The participants continue to suffer from late complications and physical, existential, emotional and social challenges. The narrative intervention helped improve how participants experienced their quality of life. CONCLUSION: Long-term elderly Danish survivors diagnosed with HIV in the 1980s to mid-1990s suffer from complex symptoms and problems related to living their lives with HIV and treatment. They found that telling and sharing their life stories with other people with HIV gave them a sense of coherence, meaning and direction in life. RELEVANCE: The study documents the experiences of a group of long-term survivors of HIV in Denmark, making it relevant for organisations supporting people with HIV and for health care professionals working with this group. Furthermore, the study adds to the knowledge base on the use of narrative methods in rehabilitation.

Telemedicine in specialised palliative care: Healthcare professionals' and their perspectives on video consultations-A qualitative study.

AIMS AND OBJECTIVES: To explore the advantages and disadvantages of using video consultations, as experienced by specialised palliative care healthcare professionals, who are involved in palliative care at home. BACKGROUND: One challenge in the work of specialised palliative care teams is the substantial resources used in terms of time and transport to and from the patient's home. Video consultations may be a solution for real-time specialised palliative home care. DESIGNS: Hermeneutic, postphenomenology. METHODS: An explorative qualitative study utilising data from field notes of an autobiographical diary, participant observations and semi-structured interviews with healthcare professionals. The COREQ guideline was used for reporting the study. See Appendix S1. The data collection took place in patients' homes and at the Department of Oncology, Odense University Hospital, Denmark. RESULTS: Eight participants (n = 8); five community nurses; and three specialised palliative care team members-a head physician, a physiotherapist and a nurse-participated in the study. The healthcare professionals' knowledge was based on n = 82 video consultations with 11 patients. The range of video consultations was 3-18 per patient. The use of tablets in video consultations facilitated direct palliative care and led the community nurses and the specialised palliative care team nurse to co-operate. Potential barriers against using video consultations are the discussions about personal, and private issues regarding the illness, while family members are present. CONCLUSIONS: Video consultations in specialised palliative home care are feasible, and the technology can facilitate multidisciplinary participation and co-operation among healthcare professionals. The continuous use of video consultations over time may increase the quality of specialised palliative home care. RELEVANCE TO CLINICAL PRACTICE: The use of video consultations can provide direct specialised palliative care over distance involving healthcare professionals, patients and their relatives.

Video consultations in palliative care: A systematic integrative review.

BACKGROUND: There is extensive need for palliative care worldwide, but access to care remains inadequate, especially for non-cancer patients. Video consultations are a promising tool in the provision of home-based palliative care, but an overview of evidence solely on video consultations in palliative care is lacking. AIM: To review and synthesize current evidence regarding the use of video consultations in general and specialized palliative care to various patient groups. DESIGN: A systematic integrative review with a narrative synthesis was undertaken in accordance with PRISMA (2009) guidelines. PROSPERO #: CRD42018095383. DATA SOURCES: PubMed, Embase, CINAHL, and PsychINFO were searched for primary research articles published between 2005 and 2018. In addition, reference lists of included articles were hand searched. RESULTS: The search resulted in 813 articles; 39 articles were included in the review, consisting of mixed methods (n = 14), qualitative (n = 10), quantitative (n = 10), and case studies (n = 5). The studies mainly focused on specialized palliative care to adult patients with cancer in high income countries. Through data analysis, six themes addressing advantages/disadvantages and facilitators/barriers were identified: (1) Redesign of care, (2) Communication, (3) User perceptions, (4) Technology, (5) Privacy issues, and (6) Economic implications. CONCLUSION: Using video technology in palliative care has both advantages and disadvantages. However, evidence beyond the focus on specialized palliative care and patients with cancer is limited. Future research should focus on how and when video consultations might replace in-person specialized palliative care and video consultations in general palliative care, in low and middle income countries; and involve patients with a non-cancer diagnosis.

Experiences With Video Consultations in Specialized Palliative Home-Care: Qualitative Study of Patient and Relative Perspectives.

BACKGROUND: The work of specialized palliative care (SPC) teams is often challenged by substantial amounts of time spent driving to and from patients' homes and long distances between the patients and the hospitals. OBJECTIVE: Video consultations may be a solution for real-time SPC at home. The aim of this study was to explore the use of video consultations, experienced by patients and their relatives, as part of SPC at home. METHODS: This explorative and qualitative study included palliative care patients in different stages and relatives to use video consultations as a part of their SPC between October 2016 and March 2017. Data collection took place in the patients' homes and consisted of participant observations followed by semistructured interviews. Inclusion criteria consisted of patients with the need for SPC, aged more than 18 years, who agreed to participate, and relatives wanting to participate in the video consultations. Data were analyzed with Giorgi's descriptive phenomenological methodology. RESULTS: A number of patients (n=11) and relatives (n=3) were included and, in total, 86 video consultations were conducted. Patients participating varied in time from 1 month to 6 months, and the number of video consultations per patient varied from 3 to 18. The use of video consultations led to a situation where patients, despite life-threatening illnesses and technical difficulties, took an active role. In addition, relatives were able to join on equal terms, which increased active involvement. The patients had different opinions on when to initiate the use of video consultations in SPC; it was experienced as optional at the initiating stage as well as the final stage of illness. If the video consultations included multiple participants from the SPC team, the use of video consultations could be difficult to complete without interruptions. CONCLUSIONS: Video consultations in SPC for home-based patients are feasible and facilitate a strengthened involvement and communication between patients, relatives, and SPC team members.