Abstract
BackgroundTheory-based intervention materials must be carefully adapted to meet the needs of users with specific physical conditions. Acceptance and Commitment Therapy (ACT) has been adapted successfully for cancer, chronic pain, diabetes, irritable bowel syndrome, multiple sclerosis, and a range of other conditions, but not so far for people receiving renal haemodialysis. This paper presents findings from a study to adapt ACT-based intervention materials specifically for renal dialysis.MethodsDraft written materials consisting of four stories depicting fictitious individuals who used ACT-related techniques to help overcome different challenges and difficulties related to dialysis were adapted using a systematic patient consultation process. The participants were 18 people aged 19–80 years, with chronic kidney disease and receiving renal dialysis. Individual, semi-structured interviews were conducted to elicit participants’ views about how the content of the draft materials should be adapted to make them more realistic and relevant for people receiving renal dialysis and about how the materials should be presented and delivered to people receiving renal dialysis. The interview transcripts were analysed using a qualitative adaptation of the Delphi method in which themes are used as a framework for translating feedback into proposals for modifications.ResultsThe analysis of patient feedback supported the use of patient stories but suggested they should be presented by video and narrated by real dialysis patients. They also indicated specific adaptations to make the stories more credible and realistic. Participant feedback was translated into proposals for change that were considered along with clinical, ethical and theoretical factors. The outcome was a design for a video-based intervention that separated the stories about individuals from the explanations of the specific ACT techniques and provided greater structure, with material organised into smaller chunks. This intervention is adapted specifically for people receiving renal dialysis while retaining the distinctive theoretical principles of ACT.ConclusionsThe study shows the value of consulting patients in the development of intervention materials and illustrates a process for integrating patient feedback with theoretical, clinical and practical considerations in intervention design.
Highlights
Over 28,000 people with end-stage renal disease receive dialysis in the UK and over 25,000 receive hospital-based haemodialysis [1], which involves direct blood filtration by a dialysis machine for 4 h per treatment — delivered 3 times per week
One study used a review of evidence about factors associated with psychological distress among people with end-stage kidney disease to guide the formulation of a cognitive behaviour therapy protocol that was adapted for people undergoing dialysis [8]
ACT‐based draft materials The draft materials consisted of a printed booklet of four case descriptions of fictious dialysis patients that illustrated different difficulties and challenges associated with renal disease and in-centre dialysis treatment, and ways in which the fictitious patients were helped to overcome those challenges by using techniques based on ACT
Summary
Over 28,000 people with end-stage renal disease receive dialysis in the UK and over 25,000 receive hospital-based haemodialysis [1], which involves direct blood filtration by a dialysis machine for 4 h per treatment — delivered 3 times per week. Commencing and living with haemodialysis involves multiple losses and stressors [4, 5], and people receiving haemodialysis face significant challenges to adjust to the demands of treatment and cope with side effects and complications, which makes many dialysis patients vulnerable to impaired wellbeing and quality of life [6, 7]. One study used a review of evidence about factors associated with psychological distress among people with end-stage kidney disease to guide the formulation of a cognitive behaviour therapy protocol that was adapted for people undergoing dialysis [8]. This paper presents findings from a study to adapt ACT-based intervention materials for renal dialysis
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