Testing the Feasibility of an Online Guided-writing Intervention Designed for Informal Caregivers of People With Parkinson's Disease

Overview

When informal caregivers of people with Parkinson's disease treat themselves harshly, they can experience psychological distress. To help them show themselves the same kindness and understanding that they would show another person in the same situation, we developed an online guided-writing intervention. This involved submitting four writing exercises where they first described a difficult situation, then wrote about how a compassionate other would respond to them during that challenge. The goal of this feasibility study was to learn if caregivers could complete the full intervention alongside providing care. We also interviewed some of those caregivers who completed the full intervention about their experiences of writing and submitting exercises.

All quantitative data collection, alongside writing-exercise completion, was hosted by REDCap, a secure online platform. After providing online consent and setting their login details, caregivers completed a demographic questionnaire and pre-intervention outcome measures. This facilitated access to the first writing exercise. If the caregiver had not started this or any of the later exercises within three days of receiving the link, they received an automated reminder. If they did not access the exercise for another three and six days, they received further reminders. For each exercise, they saw a brief description of self-compassion, followed by writing guidance that was individual to that exercise. Caregivers were encouraged to write for at least 15 minutes but had limitless use of a 'save and return' function, which also had no maximum time-limit for returning. Submitting an exercise triggered next-day receipt of the link to the proceeding exercise, whilst submitting the fourth exercise led straight to the post-intervention outcome measures. These concluded with a question about whether they would take part in a semi-structured interview to discuss their experiences. All interviews were hosted, recorded and transcribed using MS Teams. Caregivers answered pre-determined questions, with flexibility for follow-up questions dependent on their answers. Post-interview, transcripts were downloaded and corrected for errors prior to analysis. All caregivers also received a link to follow-up measures two weeks after completing the intervention. At the end of the study, quantitative data was downloaded from REDCap in excel format and prepared for analysis.