Title: The qualitative DIGNITAL study: Amending and Developing Dignity Therapy forYoung Adults with Life Limiting Conditions
Funder: Department of Health and Social Care

Abstract: Background Dignity Therapy (DT) is a validated psycho-therapeutic approach designed to bring about a sense of meaning and purpose for individuals at the end of life, and their families. DT involves facilitating individuals to discuss their valued memories, accomplishments, life lessons, and hopes for significant others. DT has been well received by adult patients and their family members, with research identifying improvements in measures of well-being and the overall quality of life of patients at the end of life. However, DT research has primarily focused on adult patients with cancer. Few studies have included young adults (YA)18-24 years (mean age range 49-65 years) and those with life-limiting conditions (LLC), highlighting a need to begin developing and evaluating a DT based intervention for young adults with LLC (YA/LLC). Aims To amend (with permission already obtained from the DT originator) and develop a DT for YA/LLC (DIGNITAL - Dignity Therapy for Young Adults with Life Limiting Conditions). Objectives 1) Adapt the current Dignity Therapy Question Protocol (DTQP) for YA/LLC and explore user perspectives on the potential effectiveness of DIGNITAL. 2) Develop paper and digital versions of DIGNITAL to promote and support wider accessibility; 3) Evaluate the revised DTQP and DIGNITAL for YA/LLC. Methods A three-phased qualitative design; 1) Conduct 18 individual interviews with YA/LLC and two focus groups (five per group) with health care professionals (HCP) to inform adaption of the DTQP and the content of DIGNITAL; 2) Develop DIGNITAL using emergent themes from phase 1; 3) Evaluate the revised DTQP and DIGNITAL - three focus groups with YA/LLC (6 per group), two focus groups with HCP (5 per group). In addition, interviews will be undertaken with nine YA/LLC new to the study. Timelines for delivery Study set-up (month 0-1); Phase 1 interviews and focus groups (months 1-9); Phase 3 evaluation (months 10-18); Phase 2 will be undertaken concurrently with phase 1 and 3. Anticipated impact and dissemination The proposed study will amend DT and develop DIGNITAL and is the first stage of developing a complex intervention. In subsequent work, we will conduct a larger feasibility study to determine if and how DIGNITAL makes a quantitative and qualitative difference to the psycho-social and spiritual well-being of YA/LLC. We will also explore ease and cost of delivery of DIGNITAL and how it can be best integrated into current models and practices of supportive and palliative care. YA/LLC who participate in the study are likely to benefit from being offered the opportunity to share their views and experiences in confidence, and HCP are likely to develop a greater understanding of the potential role of DIGNITAL when supporting YA/LLC to understand aspects of their lives. Study outputs will include; DIGNITAL; research reports; journal articles including (i) the methods taken to adapt the DTQP for YA with LLC, (ii) the development of DIGNITAL, and (iii) reporting the small-scale evaluation of DIGNITAL); a feasibility study protocol based on the findings of this proposed study.

Lay abstract: Thirteen thousand young adults (18 to 24 years old) have life limiting conditions in England. Most receive palliative care. Palliative care supports the well-being of those with shortened lives. There is a need to guide young adults with life limiting conditions to reflect on the meaning and purpose of their lives. Research suggests that Dignity Therapy is well received by older adults, who report less anxiety and depression. Dignity Therapy is an activity whereby an individual has a guided and supportive, recorded conversation with a trained therapist. The therapist encourages talk about happy memories, life lessons and hopes for loved ones. The activity involves a written life reflection. Many share their reflections with family. We asked young adults with life limiting conditions and healthcare professionals to share their thoughts about Dignity Therapy. Young adults said it would help them share their feelings and create something meaningful for them and their families. Healthcare professionals said it would make young adults feel valued and could support end-of-life talks. Both groups said Dignity Therapy needed development. Most thought a digital activity would be of more interest to young adults. We will co-develop Dignity Therapy with and for young adults with life limiting conditions. Firstly, we will interview eighteen young adults with life limiting conditions and carry out two group discussions with ten health care professionals. They will be asked to share their views of Dignity Therapy for young adults with life limiting conditions and the content of a digital version. A Dignity Therapy for young adults with life limiting conditions will be developed and we will call it DIGNITAL. It will be paper based, a website and smart phone application. All those involved in developing DIGNITAL will be asked to attend one of five group discussions to share their views. A further nine young adults with life limiting conditions will be shown DIGNITAL and interviewed. They will share their views as they look through its content. All these views will help us to finish the content of DIGNITAL. Our study plan is designed with users. A co-applicant has a life limiting condition. They serve as the voice for young adults with palliative care needs for many health and social care bodies. The steering group includes six young adults with life limiting conditions. This group will influence the study conduct. We have a detailed plan to share news of our study. The charity Together for Short Lives will share news of DIGNITAL through newsletters and social media platforms. A hospice workshop will show users DIGNITAL. We will ask twenty family members if they think DIGNITAL will be of any benefit. We will share our study findings through reports, journals, and conferences

Research activity codes: 7.2 END OF LIFE CARE
Health categories: GENERIC HEALTH RELEVANCE