From Partner to Caregiver: Identity Change and its Consequences in Autoimmune Disease

by | May 21, 2026 | Research Opportunities

From Partner to Caregiver: Identity Change and its Consequences in Autoimmune Disease
This research explores how romantic partners of people with flare‑remitting autoimmune diseases, such as lupus, experience the shift from being a partner to becoming a caregiver. This involves understanding “how a romantic partner’s identity changes when they become a caregiver… and the emotional, psychological and relational consequences of that change.”
The study aims to examine how partners make sense of this transition, how repeated flare‑related role changes affect their identity, and how these shifts influence their emotional well-being and relationship dynamics.
This work matters for people affected by lupus because flare‑remitting conditions create unpredictable, often invisible care demands that can place significant strain on partners. By highlighting the specific challenges partner‑caregivers face, the study can help inform better support, improve caregiver wellbeing, and ultimately strengthen the support available to people living with lupus.
Deadline: End of July
What’s involved:
  • Complete an eligibility criteria form and read the participant information sheet. If you would like to take part, you will need to provide your contact email
  • You will then receive a digital consent form to complete and a booking link to book in your interview at a suitable time
  • You will take part in a one‑to‑one semi‑structured interview (around 60–90 minutes) conducted online via Microsoft Teams. During the interview, you will be invited to talk about your experiences of supporting a partner with a flare‑remitting autoimmune disease, including lupus. The conversation will explore how your role has changed during flare periods and how this has affected your identity, emotions and relationship
  • The interview will be audio‑recorded, transcribed, and anonymised. You can pause, skip questions or withdraw at any time. After the interview, you will receive a debrief with signposting to support services
For more information, read the patient information sheet: https://tinyurl.com/InformationSheetPIS 
Who:
Participants must:
  • Be a romantic partner, spouse or cohabitee of someone diagnosed with a flare‑remitting autoimmune disease, including:
    • Systemic Lupus Erythematosus (SLE)
    • Cutaneous Lupus Erythematosus (CLE)
    • Discoid Lupus Erythematosus (DLE)
    • Subacute Cutaneous Lupus (SCLE)
    • Mixed Connective Tissue Disease (MCTD) with lupus‑like flares
    • Undifferentiated Connective Tissue Disease (UCTD) where lupus‑type flare patterns are present
  • Be the primary caregiver during flare periods
  • Be 18+ years old
  • Have been caregiving for at least 24 months, ensuring experience across multiple flare cycles
  • Speak English well enough for an in‑depth interview
Participants will be excluded if they:
  • Have severe or unmanaged mental health difficulties that could make participation unsafe
  • Are considered vulnerable or unable to give informed consent
  • Are in acute emotional crisis
  • Are not the primary caregiver during flares
  • Do not have a partner with a confirmed flare‑remitting autoimmune diagnosis (including lupus)
  • Are not in a romantic/partner relationship with the person they support
  • Have been caregiving for less than 24 months
  • Cannot speak English sufficiently for interview participation
Payment and expenses: Not provided
  
Feedback: You may contact the student researcher (Rachel) if you would like to receive a summary of the study’s findings. A results summary will also be shared with participating charities, and the researcher intends to publish the work after completing the MSc
Interested in taking part? Please complete the eligibility criteria form: https://forms.cloud.microsoft/e/z91XRBNUeE 
Contacts:
 
Funded by: This study is not externally funded and is being conducted as part of the researcher’s MSc dissertation