It is widely understood that the effects of scleroderma can be extremely debilitating, in severe cases limiting a person's ability to work, socialise and partake in their favourite hobbies. In these circumstances, it is important that an individual has a strong support network to help them with day-to-day tasks, with managing the condition and with coping with the lifestyle changes they may be experiencing. The support network can also be viewed as informal caregivers, as these tend to be the parents, children or partners of the affected person.
Often in these cases, it is easy for informal caregivers to feel that the responsibility is solely upon them to maintain their loved one's quality of life. This in turn can make it more challenging for them to manage other priorities, such as full-time work and looking after the whole family, and often people can end up sacrificing their own welfare and mental health to help a family member or partner live with a complex condition. Although understandable, this is not a sustainable method of providing informal care and the feat of doing so should not be underestimated.
To build an understanding of what the day-to-day challenges are of providing a form of care to someone living with systemic sclerosis (SSc), a study was conducted whereby caregivers of people living with SSc from 3 different continents completed an online questionnaire, rating the importance of possible caregiver challenges and the likelihood of them using different forms of support services. This was based at the Lady Davis Institute of Jewish General Hospital in Montreal, Canada, and the results were published in the Disability and Rehabilitation Journal.
202 informal caregivers completed the survey, of which 79 were women and 123 were men. It was emphasised that the most important challenges surrounded being able to support the care recipient with emotional difficulties and physical discomfort. It was indicated that the support services that caregivers would be most likely to use were those involved online or hard-copy information resources, including those provided soon after diagnosis, compared to support that involved interacting with others, such as through support groups or a helpline. This implies that the caregiver's medical journey would be made easier if there were better clinical information provisions in place.
There are several actions that medical charities, such as SRUK, GP surgeries and hospitals can take to develop support services. It is essential that these focus on aspects of caring that caregivers tend to find most challenging and be delivered in a way that is aligned with caregiver preferences. This can be through providing carer workshops or producing information leaflets.
SRUK has made steps in this direction through the release of the 'Understanding Raynaud's' and 'Understanding Scleroderma' booklets. These will gradually be distributed to GP surgeries and hospitals, starting with the 6 specialist centres. 'Understanding Raynaud's' can be viewed in pdf form on our website
If caregivers feel equipped with information when helping a loved one cope with a condition such as SSc, they are more likely to provide a form of care that is healthy, maintainable and effective for the recipient. This can be of immense benefit to the person living with SSc in the form of a good quality of life.