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Understanding Self-care practices to live well with HIV: A phenomenological study to inform supportive technology

Lookup NU author(s): Dr Caroline ClaisseORCiD



This is the authors' accepted manuscript of a conference proceedings (inc. abstract) published in its final definitive form in 2022. For re-use rights please refer to the publishers terms and conditions.


Background: This empirical study utilised a paper-based Self-care diary as a design prompt to facilitate discussions with four UK adults (from a sample of seven) living with the Human Immunodeficiency Virus (HIV). The aim was to understand Self-care practices through the diary deployment in each participant’s daily life for up to six months. Supported by three semi-structured interviews with each participant, we investigated individual routines, experiences, needs and concerns for self-managing HIV, plus experiences of consultations with Healthcare Professionals (HCPs to inform Self-care Information Communication Technology (ICT) design for living well with HIV, from a user-centred perspective. Methods: Participants were recruited via HIV charitable organisations in England. A purposive sample of four participants were selected. Two identified as cis male, one as Trans man, and one as female. All identified as Caucasian and were aged between 20 and 68. Two male participants identified as Gay, one as Queer, and the female participant as heterosexual. Audio data were collected on three occasions: at study commencement; at interim stage; and at study deployment end. Data was transcribed verbatim producing 12 transcripts which were analysed using Interpretative Phenomenological Analysis. Results: The analysis generated three superordinate themes. The first, Value in Diary Engagement, provided participants with opportunities to self- reflect, self-record and to generate personal data which could be utilised in routine medical appointments. The second, Trusted Communications, highlighted patient-centred, collaborative engagement with HIV physicians in which participants felt acknowledged and listened to whilst receiving optimum care. The final theme, Lack of Understanding, highlighted experiences with other HCPs in participants’ network of care, including General Practitioners (GPs), in which stigma was prevalent along with feelings of being rushed and not being listened to. Conclusions: Participant experiences highlight the personal value of using patient-generated data in the context of consultations with different HCPs in a multidisciplinary network of care. Also illuminated is the need for effective communication in these consultations, providing the patient the time to convey their experiences in a non-judgmental environment whilst feeling listened to. This study evidences unmet communication needs in consultations with HCPs other than HIV physicians for supporting patient-centred health care consultations.

Publication metadata

Author(s): Sidat S, Claisse C, Laycock D, Kasadha B, Coventry L, Durrant A

Publication type: Conference Proceedings (inc. Abstract)

Publication status: Published

Conference Name: AIDS 2022 The 24th International AIDS Conference

Year of Conference: 2022

Online publication date: 29/07/2022

Acceptance date: 04/07/2022

Date deposited: 27/07/2022


ePrints DOI: 10.57711/sjmy-9n67