In 2022, PHA UK members were invited to take part in a research study to see whether ‘self-compassion’ can aid better understanding of the impact of PH. Patients and carers volunteered their time and experiences, and the results will now guide the development of support mechanisms to help people cope with the disease.
Clinical Psychologist Dr Gregg Rawlings, who led the research, explains more…
“We know that living with PH can negatively impact on people’s mental wellbeing. For example, people can be at a higher risk of experiencing anxiety and low mood (also known as depression), which can affect their health-related quality of life. Health-related quality of life is a term used to describe how someone perceives their physical and psychological health, and social wellbeing. We also know that people who support individuals with PH, sometimes referred to as carers or caregivers, can also experience anxiety, depression and strain associated with supporting their loved one with PH. This is sometimes called caregiver burden.
There is a lot of research which has shown that self-compassion can be related with depression, anxiety, health-related quality of life, isolation and stress in people impacted by long-term medical conditions. There is even a type of psychological treatment called Compassion Focused Therapy (CFT), which focuses on helping a person develop compassion to themselves and others as a way of coping.
Self-compassion can mean different things to different people. We use it for the purpose of our study to mean being kind to yourself and not judging yourself negatively. It can mean talking about your thoughts and emotions, rather than bottling them up or pretending they do not exist. Self-compassion can also mean acknowledging that experiencing difficulties is a normal experience and a part of being human, and it is not a reason to be unkind to yourself or isolate yourself from others.
In our study, we wanted to see whether self-compassion can help us to better understand the impact of PH on people with the condition and those who support this group of individuals.”
“This is the first time that self-compassion has been investigated in PH. This research adds to the growing number of studies that have looked at how psychological factors, such as our thoughts, emotions and behaviours, can interact with PH. It is of course important for treatments to target the condition itself, but this body of research is showing how it is also important for treatments to consider the emotional wellbeing of people affected by PH.”
“The study was open to people over the age of 18, either living with PH or supporting someone with PH. In total, 65 people with PH and 29 caregivers were involved in the study.
People were first asked to read a short summary of the study before providing consent to take part. They were then given some questionnaires to complete, which included questions about their demographics (such as age and gender), experiences of anxiety and depression, and whether they have been acting self-compassionately.
People with PH were also asked to complete a questionnaire about their health-related quality of life, and carers were given a questionnaire on caregiver burden.”
“We found that both groups, people with PH and carers too, scored high on symptoms of anxiety and depression. We were especially surprised at the high rate of anxiety and depression in carers, which is something we want to look at in more detail in a future study.
We found self-compassion was related to anxiety, depression and health-related quality of life in individuals with PH and caregiver burden in carers. In other words, people who were more self-compassionate reported fewer difficulties with their emotional health and wellbeing.
When we looked at the results in more detail, we found in people with PH, those who were more judgmental of themselves, experienced greater isolation, and were more likely to focus on or become preoccupied by their difficulties, experienced more symptoms of anxiety and depression and lower health-related quality of life. We found something similar amongst carers.
However, the data also showed that people who were kind to themselves, who were more open to their difficulties, and who recognised that having problems is a common human experience – not a reason to be unkind to themselves – reported fewer symptoms of anxiety.”
“The findings help us to understand what can support people with PH and carers to cope with the impact of PH. This can help when trying to identify people who may be more at risk of experiencing difficulties.
For instance, people who are not being compassionate to themselves may be more likely to be experiencing problems with their emotional wellbeing. The findings can also help to guide treatments. For example, if we know what is helpful (and what is unhelpful), we can share this information with others and use it to inform what type of support people can receive.
Based on our findings we can suggest how not being compassionate towards yourself may cause or make worse some of the difficulties caused by PH. For instance, people who negatively judge themselves may be more likely to experience low mood and isolate themselves from others. We know that feeling isolated can cause loneliness and make people feel unsupported. This can then cause anxiety and greater symptoms of low mood, meaning that people may be more likely to think negatively about themselves. This can then create what is known as a negative cycle, where people’s difficulties get worse over time.”
“The support we received from members of PHA UK in response to this study has been fantastic. By taking part in research studies, you are helping us to understand the condition better and improve the support people impacted by PH receive. We want to thank everyone who taken part for their time and for sharing their experience and knowledge with us.”