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What do personal narratives tell us about individuals’ experience of severe and enduring eating difficulties in the context of receiving specialist service input?

Secondary Questions:

• What do personal narratives tell us about people’s sense of support, and hope, in the context of living with a severe and enduring eating difficulties?

• What do peoples’ narratives tell us about their understanding of personal agency, and their constructions of power and control?

• What do personal narratives tell us about how individuals with long-term experience of eating difficulties perceive service provision?

Participants

Participants will have a reported history of long-term, severe and enduring eating difficulties. They will be known to services and may be inpatient or community based. In line with Robinson’s (2009) description of SEED, participants will have long-standing, stable experience of eating difficulties, which have been present for a minimum of 10 years. This threshold is in keeping with research that has found rates of recovery to be significantly slower for individuals who have

experienced eating difficulties for 10 years or more, compared to those who self-report experience of between 4-10 years (Steinhausen, 2000). Inclusion criteria will involve individuals who are 1) over 18 years of age, 2) currently accessing specialist eating disorder services or, if not recruited through these services, participants must have been previously known to healthcare services for reasons relating to their eating difficulties and 3) consider their experience of eating difficulties to have lasted for 10 years or more with a severe impact on their quality of life. Participants will be excluded if there is any

question regarding capacity to consent raised by the individual, the primary researcher or any of the professionals involved in their care.

Design

As the purpose of the research is to facilitate a greater understanding of the lived experience of people with SEED this research will utilise a qualitative methodology, specifically a narrative

approach. The interviews will be conducted in line with a narrative analytic approach (Bauer, 1996). Individual interviews will be conducted following an initial open-ended question, an example of which may be: "I am interested in hearing about your experience of living with an eating disorder. I would like to know about your experiences from childhood to where you are now. In your story please include any events or relationships that you think are important. Please start wherever you like, take as much time as you need and share only what you feel comfortable sharing. " Prompts will be only used to encourage of participants to tell the story of their experiences in a way that feels comfortable to them. Following transcription the narrative will be summarised and will be offered to the participant for review to enhance reliability. All stories will be collated and themes across and within the data will be developed.

their experiences in the way they do, while remaining mindful of the role of the interviewer in this process. We hope to identify a minimum of six and a maximum of ten participants that satisfy the inclusion and exclusion criteria, with the aim of ascertaining a feasible balance between providing in depth analysis across a range of different perspectives and experiences. This is in keeping with numbers of participants typically recruited within narrative approaches (Dawson et al., 2014; Wilson, Weatherhead, & Davies, 2015).

Procedure

We intend to recruit participants through specialist eating disorder services across Lancashire Care NHS Foundation Trust and Cheshire and Wirral Partnership NHS Trust, and circulate

information about the study to interested stakeholders in the Division of Clinical Psychology special interest group that has been formed to create a briefing paper about understanding Eating Disorders. Participants who meet the inclusion criteria will be informed of the opportunity to be involved in the study by the services they are accessing (see Appendix A for an example of a recruitment email to services). Participant’s will be invited to read through a recruitment leaflet provided for them by the service (see Appendix B) and access an information sheet (Appendix C), sign a consent form

(Appendix D) online or in hard copy, by post or in person, depending on their preference. Participants will be invited to attend an interview at a location of their choosing.

Lancaster University lone-working policies will be adhered to, where for each interview a check in time will be confirmed and a supervisor will be given access to sealed envelope containing the location of every interview. If I do not get in contact by the appointed time to confirm the interview has been concluded and that all is well, the supervisor will be able to access the location of the

interview to be able to make direct enquiries about my whereabouts and wellbeing. If required they will be able to pass this information on to the authorities. Interviews will be audio recorded and transcribed by a third party, while preserving confidentiality. I will develop summaries of research interviews and participants will have the option of this being fed back to them in a written or verbal format. Narrative analysis (NA) will be applied to the data.

information safely in line with data protection protocols. This process will not require interested parties to disclose any personal information in the public domain. Upon following the link to the online information sheet they will be invited to email me (at my university email account) and ask any questions about the study or request a phone call from them. If they don’t have any questions about the study, and would still like to participate, they can continue on to privately complete the consent form, and some demographic information including age, identified gender, ethnicity, religious or spiritual beliefs, length of experience with eating difficulties, any diagnosis they are aware of and comfortable to share, and current weight if known. They will also be asked to include their email or telephone number for further correspondence to arrange interview time and location, at which time I will also invite them to bring with them any significant images or objects that they feel represent their story or their relationship with their diagnosis. With their consent I will take pictures of these objects as a way of capturing and presenting data.

Information sheets will detail the flexible time commitment involved and outline how potentially emotive participating in narrative interviews can be. Participants will be encouraged to share only what they feel comfortable with and will be provided with the opportunity to debrief with the researcher involved or the services they are involved with. Participants will also be encouraged to inform their therapists or case-workers of their involvement in the research if they feel that doing so would help them feel further supported around the process. They will also be given a debriefing sheet (see Appendix E) with access to information about third party agencies that can provide support such as the Samaritans and the Beat charity (https://www.b-eat.co.uk/).

Face to face interviews will take place at a location that can ensure privacy and feels safe for both the researcher and participant. Lone worker policies will be adhered to. Where possible,

interviews will take place at a neutral place that the participant does not directly associate with their service provision. This may not always be feasible or preferable for the participant so interviews may also take place at NHS service sites. Interviews will be audio recorded and transcribed by a third party, while preserving confidentiality. There will also be the opportunity to feed back interview summaries to participants if they are interested.

The participant will be given confidentiality assurances in line with ethical guidelines and NHS Trust protocol. Demographic information including, age, gender, religion, accommodation status and occupational/educational experience will be collected and stored electronically where possible on a secure password protected platform (Box, housed by Lancaster University). These documents will be kept separately to audio recordings, transcripts and photographs. Any paper copies of consent forms or demographic information will be kept in a locked filing cupboard and destroyed after being transferred to the secure electronic storage system. I will be the only person to have general access to these

documents as they will be secured stored in the University system. However in the case of an emergency where I am not available, the password to this secure system will be made available to a designated member of the supervisory/research team in case they need to follow up on contacting participants for any unforeseen reason (i.e to inform them of a cancellation, or to enquire about my whereabouts if unknown).