Community-Driven Identification and Adaptation of a Cancer Caregiving Intervention for LGBTQIA Populations

Abstract

BackgroundLesbian, gay, bisexual, transgender, and other LGBTQIA cancer patients experience significant disparities in cancer-related outcomes. Their relationships may not be acknowledged in care systems designed to serve primarily heterosexual and cisgender (H/C) patients, and resources for partners and caregivers of H/C patients may not address the needs of LGBTQIA caregivers. Tailored interventions are needed to address disparities in LGBTQIA patients and caregivers.MethodsTo address this gap, researchers from Karmanos Cancer Institute in Detroit, MI and Wilmot Cancer Institute in Rochester, NY worked with a cancer action council (CAC) of LGBTQIA stakeholders with lived experience of cancer in a community-academic partnership. This group used the ADAPT-ITT model to guide their process of assessing needs in this community, identifying evidence-based interventions that could be adapted to meet those needs, and beginning the process of adapting an existing intervention to meet the needs of a new population.ResultsIn the Assessment phase of the model, CAC members shared their own experiences and concerns related to cancer and identified cancer caregiving as a priority area for intervention. In the Decision-Making phase of the model, researchers and CAC members performed a review of the literature on interventions that reported outcomes for cancer caregiver, identifying 13 promising interventions. Each of these interventions was evaluated over a series of meetings using a scoring rubric. Based on this rubric, the FOCUS intervention was established as an appropriate target for adaptation to the LGBTQIA population. In the first stage of the Adaptation phase, CAC members reacted to the intervention content and identified principal components for adaptation.ConclusionWhile the FOCUS intervention adaptation is still in process, this manuscript can serve as a guide for others establishing community-academic partnerships to adapt interventions, as well as those developing interventions and resources for LGBTQIA persons coping with cancer.

Adapting an Intervention to Improve Acute Myocardial Infarction Care in Tanzania: Co-Design of the MIMIC Intervention

“…The ADAPT-ITT model (Assessment, Decisions, Adaptation, Production, Topical experts, Integration, Training staff, and Testing) was used to guide the adaptation process [21]. The ADAPT-ITT model was first developed for adapting evidence-based HIV interventions but has been successfully utilized for adaptation of multiple types of interventions, including violence prevention programs, health education programs, mental health programs, and caregiver support programs [25,26]. The original ADAPT-ITT model recommended eliciting feedback from the target population in a few of the adaptation steps.…”

People affected by cancer and their carers from gender and sexually diverse communities: their experiences and the role of smartphone applications

“…People living with cancer often lack support related to information seeking and emotional wellbeing, while carers are also impacted by burden, family and work commitments [ 1 – 4 ]. Diverse patient–carer relationships may not be acknowledged across health systems designed to serve primarily heterosexual cancer patients, and resources may not address their needs [ 5 ]. Unique differences exist for people who identify as part of lesbian, gay, bisexual, transgender, queer, intersex or asexual (LGBTQIA+) communities.…”

“…Tailored interventions are needed to address disparities among LGBTQIA + patients and their carers [ 5 ]. For example, access to supportive cancer services has been identified by clinicians as a gap in the provision of care, with a particular need to support people from diverse backgrounds [ 10 ].…”

Reinforcing or Disrupting Gender Affirmation: The Impact of Cancer on Transgender Embodiment and Identity

“…Recent systematic literature reviews highlight the need to understand the complexity of LGBTQI experience of cancer, including people who are trans, across a range of cancer streams, ages and sexualities (Clarke et al, 2019;Griggs et al, 2017;Pratt-Chapman et al, 2021;Quinn et al, 2015). There is also a need to examine the perspectives and experiences of informal cancer carers who are trans, a group who are often invisible within LGBTQI cancer research and care (Arthur & Kamen, 2018;Kamen et al, 2022). Cis LBQ partner-carers have reported being excluded from consultations with HCPs (Margolies & Scout, 2013), and not offered supportive services typically offered to heterosexual couples (Kamen, 2018), with disclosure of sexuality to HCPs associated with distress (Boehmer et al, 2005).…”