R01NR019315

Gender Affirmation, Quality of Life, and Access to Care: A Mixed-Method Longitudinal Investigation - Project Summary/Abstract

Gender minorities (GM) have gained greater visibility in U.S. society in recent years. However, the physical and mental health of GM individuals remains a critical public health issue. GM face persistent stigma, discrimination, and barriers to services that affect their health and wellbeing over the life course.

Gender affirmation is a process of recognizing a person's gender identity and expression, which may include emotional support as well as social and medical interventions; it has been associated with mental health and wellbeing. Unmet needs for gender affirmation have been linked to greater risk behavior and poorer self-care among GM, particularly related to HIV risk and treatment.

Clinicians who are specially trained in providing gender-affirming services may be uniquely positioned to support the emotional needs of GM individuals, with the potential to have a long-term impact on a person's trust and comfort in interacting with healthcare providers, engagement and retention in care, and self-care behaviors that influence one's health trajectory over the life course.

There is a dearth of evidence on the healthcare needs of GM individuals after surgery, their psychosocial adjustment during this phase of their identity development, their quality of life, and long-term physical and emotional wellbeing.

The goal of this prospective, mixed method, longitudinal cohort study is to build a rich evidence base on GM identity development after gender-affirming surgery and the long-term healthcare needs of GM individuals, examining changes in multiple domains of quality of life and their relationships with healthcare providers.

Using a combination of quantitative and qualitative methods, our specific aims are to:

1. Document changes over time in GM individuals' (N = 300 recruited from a gender-affirming, post-surgical home healthcare program) psychosocial development after surgery, including such domains as (i) gender and sexual identity development, (ii) intimacy and relationships, (iii) social and community support, (iv) employment and financial wellbeing, and (v) environmental mastery and purpose in life.

2. Examine changes in GM individuals' health-related quality of life after surgery, including such domains as (i) physical health, (ii) mental health and social wellbeing, (iii) sexual function, satisfaction and health, (iv) health behaviors and self-care, and (v) engagement and retention in healthcare and relationships with healthcare providers.

3. Identify barriers and facilitators to GM individuals' engagement with their self-care and engagement and retention in home and subsequent healthcare for both gender-related and other health concerns.

The study will address a significant gap in the current evidence on best practices to support GM individuals during a pivotal life course transition, with the potential to improve their engagement in care and mitigate the pervasive disparities in healthcare access, outcomes, and quality of life affecting this population.

Visiting Nurse Service Of New York

NURSES UNDERSTAND THAT IMPROVING HEALTH AND WELL-BEING MEANS ADDRESSING PEOPLE'S NEEDS IN MULTIPLE SETTINGS, CONTEXTS, AND OVER THE WHOLE LIFE COURSE. SCIENCE SUPPORTED BY THE NATIONAL INSTITUTE OF NURSING RESEARCH (NINR) USES THIS HOLISTIC PERSPECTIVE TO IMPROVE INDIVIDUAL AND POPULATION HEALTH AND ADVANCE HEALTH EQUITY. NINR-SUPPORTED RESEARCH PROMOTES HEALTH AND WELL-BEING BY ADDRESSING NEEDS AT MULTIPLE LEVELS INDIVIDUAL, FAMILY, COMMUNITY, AND SOCIETAL LEVELS AND DEVELOPING TREATMENT AND PREVENTION STRATEGIES THAT ARE RESPONSIVE TO THE REALITY OF PEOPLE'S LIVES. NURSES KNOW PEOPLE, AND PEOPLE TRUST NURSES. PATIENT AND FAMILIES INTERACT WITH NURSES MORE THAN ANY OTHER CLINICIANS. NURSING SCIENCE USES THIS SPECIAL RELATIONSHIP TO BETTER UNDERSTAND PATIENTS, FAMILIES, AND COMMUNITIES AND THE MANY FACTORS THAT INFLUENCE THEIR HEALTH. NURSING SCIENCE SUPPORTED BY NINR USES THIS KNOWLEDGE TO DEVELOP STRATEGIES FOR IMPROVING HEALTH AND WELLNESS ACROSS POPULATIONS, HEALTH CARE SETTINGS, AND THE LIFESPAN, WITH AN EMPHASIS ON ACHIEVING HEALTH EQUITY. NINR-SUPPORTED SCIENTISTS HAVE DEVELOPED INTERVENTIONS FOR: SUPPORTING PARENTS OF PREMATURE INFANTS, PROMOTING HIV PREVENTION IN UNDERSERVED POPULATIONS, IMPROVING TRANSITIONAL CARE LEADING TO BETTER OUTCOMES AND COST-SAVINGS, AND HELPING INNER-CITY CHILDREN MANAGE ASTHMA. NURSING SCIENCE TRANSCENDS THE BOUNDARIES OF DISEASE AND RESEARCH DISCIPLINES TO BETTER UNDERSTAND THE EXPERIENCES OF INDIVIDUALS AND FAMILIES LIVING WITH ILLNESS AND TO DEVELOP PERSONALIZED APPROACHES THAT MAXIMIZE HEALTH AND WELL-BEING FOR INDIVIDUALS AT ALL STAGES OF LIFE, ACROSS DIVERSE POPULATIONS AND SETTINGS. NINR-SUPPORTED SCIENCE USES NURSING SCIENCE'S UNIQUE, PATIENT AND COMMUNITY-FOCUSED PERSPECTIVE AND WIDE REACH ACROSS CLINICAL AND COMMUNITY SETTINGS TO ADVANCE OUR UNDERSTANDING OF THE SOCIAL DETERMINANTS OF HEALTH: THOSE FACTORS THAT ARE AT THE ROOT OF THE INEQUITIES THAT WE SEE, SUCH AS FOOD INSECURITY AND ACCESS TO HEALTHCARE. NINR RESEARCH EFFORTS IN WELLNESS INVESTIGATE THE KEY BIOLOGICAL, BEHAVIORAL, AND SOCIAL FACTORS THAT PROMOTE LONG-TERM HEALTH AND HEALTHY BEHAVIORS AND PREVENT THE DEVELOPMENT OF ILLNESS ACROSS HEALTH CONDITIONS, SETTINGS, AND THE LIFESPAN. RESEARCH IN WELLNESS IS ALSO FOCUSED ON DEVELOPING AND TESTING CULTURALLY APPROPRIATE INTERVENTIONS TO PROMOTE HEALTH AND PREVENT ILLNESS IN MINORITY AND UNDERSERVED GROUPS. NINR ALSO SUPPORTS SCIENCE TO ASSIST INDIVIDUALS, FAMILIES, AND HEALTH CARE PROFESSIONALS IN MANAGING ADVANCED, SERIOUS ILLNESS, AND PLANNING FOR END-OF-LIFE DECISIONS. IN ADDITION, NINR PROMOTES TECHNOLOGICAL ADVANCEMENTS THAT ADDRESS A RANGE OF HEALTH CARE CHALLENGES AND FACILITATE THE DELIVERY OF REAL-TIME PERSONALIZED INFORMATION TO INDIVIDUALS AND FAMILIES, HEALTH CARE PROVIDERS, AND COMMUNITIES. FINALLY, NINR HAS A LONGSTANDING AND CONTINUING COMMITMENT TO DEVELOPING THE NEXT GENERATION OF NURSE SCIENTISTS: THOSE INDIVIDUALS AND TEAM MEMBERS WHO WILL CARRY THE FIELD OF NURSING SCIENCE INTO THE FUTURE. IN ORDER TO PREPARE AN INNOVATIVE, DIVERSE, AND TALENTED NEXT GENERATION OF NURSE SCIENTISTS, NINR SUPPORTS A VARIETY OF TRAINING OPPORTUNITIES FOR SCIENTISTS AND TRAINEES AT ALL CAREER LEVELS, PARTICULARLY THOSE AT AN EARLY CAREER STAGE WHO ARE SO CRITICAL TO SUSTAINING THE FUTURE OF INNOVATIVE RESEARCH AND HIGH QUALITY HEALTH CARE.

93.361 - Nursing Research

National Institute of Nursing Research (NINR) [HHS - NIH]

New York, New York 100214990 United States

Single Zip Code

Research on the Health of Transgender and Gender Nonconforming Populations (R01 Clinical Trial Optional) (PA-18-729)

Amendment Since initial award the total obligations have increased 377% from $726,394 to $3,465,853.