The qualitative DIGNITAL study: Amending and Developing Dignity Therapy forYoung Adults with Life Limiting Conditions

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.