Evaluating the effectiveness of self-help guides for improving the psychosocial wellbeing of people with facial palsy
Dr Matthew Hotton – Clinical Psychologist
Background
In 2017 Camilla Holden, a Trainee Clinical Psychologist, carried out an evaluation of the psychosocial wellbeing of patients under the care of the Oxford Facial Palsy Unit, which highlighted the significant negative psychosocial impact of facial palsy, particularly regarding social function, psychological wellbeing and satisfaction with appearance. This evaluation prompted the Oxford Facial Palsy Unit to apply for funding to the Vocational Training Charitable Trust (VTCT) Foundation to fund a project to provide psychological support for patients with facial palsy, primarily through the developmental of psychology self-help information and therapy guides.
There is huge inequity in the United Kingdom regarding access to specialist facial palsy treatment, especially regarding psychological support. This highlights the potential value of psychological treatment that is universally available, regardless of whether an individual is under the care of a specialist facial palsy service. The development of self-help psychological interventions for people with facial palsy is one solution to allow for the provision psychological support in primary care settings, as well as specialist services.
Psychological self-help, including online or booklet-based self-guided Cognitive Behavioural Therapy has been found to be effective in improving the psychosocial wellbeing of people with a visible difference, although this has yet to be tested with a population with facial palsy. This highlights the potential value of designing a self-help intervention specific for people with facial palsy, drawing on principles of Cognitive Behavioural Therapy, and other evidence-based psychological therapies, to reduce distress related to the condition.
Objectives
With the help of generous funding of the VTCT foundation, the Oxford Facial Palsy Unit was able to employ me as a Clinical Psychologist, and I worked with people with facial palsy and experts in the field to develop and carry out an evaluation of the effectiveness of six different ‘Self-Help Psychology Guides for People with Facial Palsy’:
- Coping with the Early Stages (for those within six months of the onset of FP)
- Managing Comments, Questions and Staring
- Communicating with Confidence
- Managing Anxiety
- Managing your Mood
- Building your Self-Esteem
These guides were designed to improve the psychological wellbeing and social function of people with facial palsy with each guide covering different well-documented difficulties experienced by this population. There was an additional guide which was designed to offer information and advice to family members and carers. Participants tested a guide over a 4-6 week period. Pre-post outcome measures were selected accordingly, and included measures of anxiety, depression, social function, appearance-related distress and facial function. Participants were also invited to provide feedback on a guide, upon its completion.
Main findings
We collected pre-post data from a total of 93 people with facial palsy and eight partners or carers. Some people with facial palsy chose to trial multiple guides, resulting in a total of 140 guides being tested. A further 36 participants were not included in the final data analysis due to dropping out of the study.
Effectiveness of the guides
Participants reported the following changes because of completing a guide:
- Participants reported significant improvement in social function, both as measured by the Facial Disability Index and the FACE-Q Social Function measure
- articipants reported significant reductions in appearance-related distress following the completion of a self-help guide, as measured by the FACE-Q Appearance-Related Psychosocial Distress Scale
- Participants reported significant improvements on the FACE-Q Psychological Function Scale, indicating reductions in the impact of appearance on psychological function
- Levels of anxiety and depression did not change as a result of completing a guide
Participant feedback on the guides
Participants provided lots of helpful feedback about the guides, with ninety percent of participants reporting that they found the guide they completed helpful. A similar percentage of participants agreed (‘strongly’ or ‘slightly’) that the practical exercises (90.0%), case studies and examples (89.8%) and prompts to reflect on their own situation (92.4%) were helpful. 79.9% of participants said that the guides had a positive impact on ability to cope with facial palsy, while 73.5% participants reported the guides had a positive impact on how they were feeling. Positively, 73.4% of participants ‘strongly’ or ‘slightly’ agreed they were confident that any changes that they had made after using the guide would last.
People with facial palsy generally reported the guides to be the right length, with 88.3% ‘slightly’ or ‘strongly’ disagreeing with the statement that the guide they had tested was too long, and 87.5% ‘slightly’ or ‘strongly’ disagreeing with the statement that the guide was too short. The guides were reported by most as being easy to understand and use (95.3%), the majority (88.3%) agreed that their guide felt relevant to them and 92.2% agreed that they would recommend the guide to someone else
Conclusions
Funding from the VTCT foundation allowed for the evaluation of self-help psychology guides for improving the psychological wellbeing and social function of people with facial palsy. Given the inequity of access to specialist facial services across the United Kingdom, especially specialist psychological support for those with facial palsy, self-help psychology guides offer a low intensity and universally available treatment for people experiencing psychosocial distress related to their condition (available from Oxford Facial Palsy Clinic – Oxford University Hospitals (ouh.nhs.uk)).
Personal reflections on being a recipient of VTCT funding
Funding from the VTCT foundation provided me with a great opportunity to further develop my research skills and to form strong collaborative links with experts in the field of facial palsy psychology from all around the world. As part of the process of identifying the content for the self-help guides described earlier, funding from the VTCT foundation afforded me the time to collaborate with international colleagues to conduct systematic reviews of the research literature related to the psychosocial impact of facial palsy on children and adults. Links made with other psychologists in the field while working on this project also laid the foundation for the development of a taskforce which, in collaboration with Facial Palsy UK, ultimately produced a set of recommendations for supporting the psychological well-being of children and adults with facial palsy (available from Recommendations for supporting the psychological well-being of children and adults with facial palsy – Facial Palsy UK).
Funding from the VTCT foundation is made all the more valuable by the foundation’s sponsorship of the Appearance Collective. Networking with other members of the Appearance Collective and at the VTCT foundation’s annual showcase opened the door for me to collaborate with colleagues at the Centre for Appearance Research at the University of West of England, as well as to hear about the innovative research and practice supported by the VTCT foundation within the UK.
Above all, funding from the VTCT provided me with the opportunity to meet countless inspirational people with facial palsy. Their stories, resilience and resolve were a constant source of motivation for me throughout this project and has sparked what I hope will be a life-long passion for working with people with facial palsy. In addition, being surrounded by like-minded people at VTCT foundation showcases has strengthened my resolve to challenge and reduce the stigma surrounding visible difference at any opportunity.
Further generous funding agreed by the VTCT foundation has allowed the Oxford Facial Palsy Unit to be in the early stages of developing a future research project evaluating app-based versions of the guides evaluated in the current study, potentially providing an even more-widely available intervention to people with facial palsy.