Support groups for caregivers of patients living with lupus nephritis vital to quality of life
Reduced quality of life is common among parents and caregivers of children with rare diseases. In a study,1 researchers determined that psychosocial factors influenced quality of life substantially and that “healthcare professionals should consider and address the impairment of parental [quality of life] due to the child’s rare disease.”
Although there are existing research gaps, many carers report challenges when it comes to a lack of psychological and social support, as well as a lack of awareness of existing support services.2
In a recent exploratory study,2 researchers highlighted the importance of raising awareness for carers of patients with rare diseases about what support options are available, including charities and support groups.
For members of the lupus nephritis community, the ALL IN program3 is a way for individuals caring for someone with lupus nephritis to gain access to resources and information geared specifically to the needs of this specific population.
On the “Community Support” section of the website, care partners can learn tips to help support their loved ones, as well as advice for seeking out ways to support themselves. “As you care for your loved one, don’t forget to pay attention to your own needs,” the website states. “Care partner burnout is a fairly common occurrence among those caring for someone with a chronic illness.”
According to ALL IN, care partner support should include communicating about how the carer is feeling; setting reasonable lifestyle expectations; prioritizing the carers physical, mental, and emotional wellbeing; and identifying additional support groups, specifically geared toward caregivers, such as the Lupus Foundation of America Caregiver Support page.
In addition to resources, ALL IN also gives carers the chance to share their stories through the Care Partner Perspectives page. Care partners have the opportunity to share their perspectives on a number of relevant topics, such as challenges faced, care and support, and advice for new carers.
1. Boettcher J, Boettcher M, Wiegand-Grefe S, et al. Being the Pillar for Children with Rare Diseases-A Systematic Review on Parental Quality of Life. Int J Environ Res Public Health. 2021;18(9):4993. DOI: 10.3390/ijerph18094993. PMID: 34066738; PMCID: PMC8125857.
2. McMullan J, Crowe AL, Downes K, et al. Carer reported experiences: Supporting someone with a rare disease. Health Soc Care Community. 2021. DOI: 10.1111/hsc.13336. Epub ahead of print. PMID: 33955634.
3. Community Support. ALL IN; Aurinia Pharmaceuticals Inc.
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