High-grade glioma patient experiences of support via telemedicine v1
Research type
Research Study
Full title
Experiences of receiving support via telemedicine in high-grade glioma patients
IRAS ID
339605
Contact name
Libby Richardson
Contact email
Sponsor organisation
University of Hull
Duration of Study in the UK
1 years, 1 months, 7 days
Research summary
Summary of Research
An interview-based study to interpret High-Grade-Glioma (HGG) (grades 3-4 cancerous tumours located in the brain or spinal cord which are life limiting) patient experiences of receiving supportive appointments from their specialist nurses through telemedicine (emails, phone calls and video calls). This study will be the first to use an interpretative phenomenological approach to understand patient experiences. HGG patients are the brain tumour patient group who receive the most support through telemedicine. Previous research has suggested that telemedicine is an effective modality through which low level psychologically informed palliative support (consisting of information giving, compassionate communication, and the use of psychological techniques e.g., problem solving, assessment and signposting (NICE, 2019)) is delivered by clinical nurse specialists, but little is known about HGG patient experience of this. The aim of this study is to understand experiences of receiving support and building a relationship through telemedicine, and to understand emotional experiences of patients related to accessing support through telemedicine. A minimum of six participants will complete an interview either online or face-to-face and the interview will last for one hour, with additional breaks dependant on need.
Summary of Results
6-10 participants with a High Grade Glioma (a cancerous grade 3-4 brain tumour) were asked to share times where they had been supported by Clinical Specialist Nurse (CNS’) through emails, phone and video calls in online interviews. The interviews were transcribed and analysed using a qualitative research approach: Interpretative Phenomenological Analysis.Every participant felt uncertainty about adjusting to a new life with a high-grade glioma diagnosis and entering an unfamiliar world of treatment. For some people, this meant adjusting to a new normal, getting used to changes in their health. The main reason participants reached out for support from CNS’ was because of feeling uncertain and unsure about a new life with a brain tumour.
All participants said having a supportive relationship with their CNS’ was important to them. For most, having a trusting relationship with, and feeling connected to their CNS’ was reassuring. Some participants talked to their consultants and therapeutic radiographers for support instead of their CNS’. The researcher wondered if this was because these participants had either had negative previous experiences with nurses, making them less likely to reach out for nursing support, or because they felt like their CNS’ were too busy and overwhelmed because of NHS pressures. Having a trusting and supportive working relationship with a professional involved in their medical care was beneficial for all participants.
Participants talked about the benefits and limitations of online appointments. Face to face appointments were viewed as a more in-depth way of exploring how someone is, and helped build a working relationship. Online appointments were seen as more flexible and saved a great deal of time and travel. The researcher wondered if patients who had more negative experiences of healthcare relationships in the past would benefit more from face-to-face appointments with their CNS to help build a working relationship. Participants felt that having the skills to use technology to access appointments online was important, especially for older generations and those who may struggle financially.
Throughout the interviews, participants talked about feeling thankful to the NHS and healthcare professionals. Participants also shared deeply personal stories from times throughout their life which were not just related to their treatment. The researcher wondered if participants may have wanted to leave a legacy by having their life story written into research, and if this motivated people to participate to begin with. The researcher also wondered if participants had been given the opportunity to share their life and brain tumour journey and have this listened to. This suggested to researchers that CNS support alone may not fulfil patients’ needs to talk about their story, and what they have experienced.
Conclusion
All participants felt uncertainty about their high-grade glioma and treatment. This influenced their decision to seek support from professionals such as CNS’. How supportive CNS’ or other professionals were helped participants to feel more supported and less uncertain. In-person appointments were helpful for in-depth support, but online appointments were seen as more flexible, saving time and travel. While CNS support helped reduce uncertainty, this support did not provide a space for participants to think about their HGG journey, and to talk about changes they had experienced in their identity and life path.REC name
West of Scotland REC 3
REC reference
24/WS/0106
Date of REC Opinion
30 Aug 2024
REC opinion
Further Information Favourable Opinion