Development and validation of a measure of adolescent and young adult goal-based quality of life (MAYA-GQOL).

PURPOSE: We developed and validated a measure assessing quality of life (QOL) through importance, attainability, and discrepancy of life goals among adolescents and young adults (AYA) with and without cancer. A specific goal-based QOL measure for AYA fills a critical gap in knowledge for AYA who are at a unique life stage, which may include shifts in priorities and goals. METHODS: Through review of our existing AYA databases on goals, the literature, and cognitive interviews we developed the MAYA-GQOL. Items were administered to AYA with cancer (on/off treatment) (n = 124) and healthy AYA controls (n = 103) aged 15-29 years old. Psychometric analyses for comparison with existing QOL measures and discrepancies in perceived importance/attainability of goals were examined. RESULTS: An item pool of 700 goals, based on prior research, was refined to 173 goals across nine categories: academic, administrative, body, health, job, leisure, interpersonal, intrapersonal, and religion. Validation between the MAYA-GQOL and existing QOL measures was supported. AYA survivors reported fewer overall current goals and fewer administrative, interpersonal, leisure, and religious goals. AYA survivors rated body goal importance significantly higher than healthy controls and intrapersonal goal importance significantly lower. Little discrepancy in importance and attainability across AYA was found. CONCLUSIONS: The MAYA-GQOL represents an innovative way of measuring QOL among AYA by focusing on the relative importance, attainability, and discrepancy of developmentally appropriate goals. The MAYA-GQOL can identify areas of resilience and competence via assessment of important and attainable goals and can further assess how AYA with chronic illness are functioning relative to peers on goal domains relevant to the AYA developmental period.

Feasibility and acceptability of a pilot tailored text messaging intervention for adolescents and young adults completing cancer treatment.

PURPOSE: Despite cure, adolescents and young adults (AYA) who complete cancer treatment remain at risk for numerous physical and psychological late effects. However, engagement in recommended follow-up care, knowledge of cancer treatment history and risks, and adoption of health promoting behaviors are often suboptimal. The pilot randomized controlled trial assessed the feasibility and acceptability of a text messaging intervention (THRIVE; Texting Health Resources to Inform, motiVate, and Engage) designed to promote well-being, and health knowledge and behaviors. METHODS: Sixty-one AYA who recently completed cancer therapy enrolled and were randomized to receive THRIVE (n = 31) or an AYA survivor handbook (n = 30). Participants from both groups completed baseline measures and follow-up surveys 16 weeks later. AYA randomized to THRIVE received one to two health-related text messages per day over 16 weeks. RESULTS: THRIVE demonstrated a high level of acceptability and feasibility. Exploratory analyses highlighted promising improvements in knowledge, fruit/vegetable intake, and perceptions of health vulnerability. CONCLUSIONS: Text messaging is an acceptable and feasible intervention approach for improving well-being and health of AYA survivors. Future research is needed to test the impact of text messaging in a larger trial, including whether or not such an intervention can improve clinical outcomes, such as survivors' engagement in follow-up care.

An Exploration of Lactation Facilities and Planning in U.S. Higher Education Campuses.

BACKGROUND: Women in academia face challenges in continuing breastfeeding. Higher education campuses are investing in lactation support, but little is known about their approaches. This study explores the planning and design of lactation spaces on college and university campuses from the perspectives of campus planners and facility professionals, administrators, and other decision-makers. MATERIALS AND METHODS: We conducted an online survey with a convenience sample of members of the Society for College and University Planning (SCUP). Representatives from each U.S. member campus were invited to participate in an online survey. RESULTS: One hundred five individuals responded, representing their institutions; 94% reported at least one dedicated lactation space (range 0-50). Sixty-eight percent reported having a policy for creating/identifying lactation spaces; 28% reported that the lactation space was included in campus construction standards. Over 80% of spaces were structurally enclosed, lockable, Americans with Disabilities Act (ADA) compliant, and had open electrical outlets and in-room light control. Campus/facility planning was involved in lactation space planning at 77% of institutions and in funding for creation and maintenance at 59%. CONCLUSIONS: Many campuses are building lactation infrastructure, but there is considerable variability in approaches and accommodations for lactation at higher education institutions. While local conditions, constraints, and demands will inform program development, decision-makers can leverage campus resources, recommendations, and design best practices to improve lactation experiences of women.

Preventative Health and Risk Behaviors Among Adolescent Girls With and Without Family Histories of Breast Cancer.

PURPOSE: To compare health behaviors (smoking, alcohol use, fruit and vegetable intake, and exercise frequency) and breast self-exam (BSE) between girls with breast cancer family history (BCFH+) and without (BCFH-) and assess associates of behaviors across all girls. METHODS: A total of 208 BCFH+ girls (11-19 years old), with first- or second-degree relatives with breast cancer or a mother with a BRCA1/2 mutation, and 112 BCFH- peers reported their health behaviors, beliefs, and psychosocial function. RESULTS: Despite higher BCFH+ girls' greater perceived breast cancer risk, there were no differences between BCFH+ and BCFH- girls on diet, exercise, alcohol initiation, or BSE. BCFH+ girls were slightly more likely to report trying cigarettes (11% vs. 5%, p = .04). In multivariable models with all girls, categorical associations with behaviors included the following: developmental and demographic factors with smoking, alcohol, diet, and exercise; family breast cancer history and experience with smoking, alcohol, and diet; psychosocial factors with smoking; girls perceptions of cancer controllability and mother support for health behaviors with alcohol, diet, exercise, and BSE; and mother behaviors with diet. CONCLUSIONS: Adolescent girls from BCFH+ families reported similar health behaviors to BCFH- peers, signaling that they are not translating their higher perceived risk into cancer control behaviors. Both uncontrollable (i.e., breast cancer experiences) and modifiable factors relate to health behaviors and warrant further investigation. Results indicate that interventions with teens and parents that target modifiable variables such as controllability perceptions, maternal modeling, and communication may relate to better health behaviors and reduced future breast cancer risk.

Iterative Development of a Tailored mHealth Intervention for Adolescent and Young Adult Survivors of Childhood Cancer.

Objectives: Methods for developing mobile health (mHealth) interventions are not well described. To guide the development of future mHealth interventions, we describe the application of the agile science framework to iteratively develop a mHealth intervention for adolescent and young adult (AYA) survivors of childhood cancer. Methods: We created the AYA STEPS mobile app (AYA Self-management via Texting, Education, and Plans for Survivorship) by modifying and integrating two existing programs: an online survivorship care plan (SCP) generator and a text messaging self-management intervention for AYA off treatment. The iterative development process involved three stages of agile science: 1) Formative work, 2) Obtaining feedback about the first AYA STEPS prototype, and 3) Pilot testing and finalization of a prototype. We determined preferences of AYA stakeholders as well as discovered and addressed technology problems prior to beginning a subsequent randomized controlled trial. Results: AYA survivors reported that the app and the embedded tailored messages related to their health and SCP, were easy to use and generally satisfying and beneficial. Usage data supported that AYA were engaged in the app. Technology glitches were discovered in the pilot and addressed. Conclusions: The iterative development of AYA STEPS was essential for creating a consistent and acceptable end user experience. This study serves as one example of how behavioral scientists may apply agile science to their own mHealth research.

Lactation Space Experiences and Preferences Among Health Care Workers in an Academic Medical Center.

BACKGROUND: Comprehensive workplace lactation support programs can reduce the risk for early breastfeeding discontinuation; however, scant evidence is available to inform user-centered design of employee lactation spaces. This study describes health care workers' preferences for lactation space. MATERIALS AND METHODS: In 2016-2017, a convenience sample of 151 women who pumped at work at an academic medical center reported on demographics, lactation experiences, and room and equipment preferences through an online survey. RESULTS: Respondents worked in research and administration (32%), were nurses (30%), physicians and medical students (19%), or allied health or clinical support staff (19%). Seventy percent had ever used one of the hospital's dedicated lactation spaces. Forty-nine percent ranked hospital-grade pumps the most important piece of lactation room equipment; 83% preferred multiple occupancy lactation suites; and the average maximum acceptable distance to lactation space was 5.6 minutes. CONCLUSIONS: Optimal lactation infrastructure supports the immediate and long-term health of female workers and their children. User needs and preferences can guide design of lactation space to ensure a minimum standard for design, equipment, and distance. Workers may have different preferences depending on roles and experiences; thus, a variety of solutions may be most effective.

Psychosocial Adjustment and Perceived Risk Among Adolescent Girls From Families With BRCA1/2 or Breast Cancer History.

PURPOSE: To evaluate the impact of breast cancer family history and maternal BRCA1/2 mutation on the psychosocial adjustment and perceived risk in girls age 11 to 19 years old. MATERIALS AND METHODS: Girls age 11 to 19 years old with one or more relatives with breast cancer or a familial BRCA1/2 mutation (breast cancer family history [BCFH] positive, n = 208; n = 69 with BRCA1/2-positive mother), peers (BCFH negative, n = 112), and their mothers completed assessments of psychosocial adjustment, breast cancer-specific distress, and perceived risk of breast cancer. RESULTS: General psychosocial adjustment did not differ significantly between BCFH-positive and BCFH-negative girls, either by self-report or mother report, except for higher self-esteem among BCFH-positive girls (P = .01). BCFH-positive girls had higher breast cancer-specific distress than BCFH-negative girls (P < .001), but girls from BRCA1/2-positive families did not differ from other BCFH-positive peers. BCFH-positive girls were more likely to report themselves at increased self-risk for breast cancer in adulthood than BCFH-negative peers (74% v 33%, respectively; P ≤ .001). Girls from BRCA1/2-positive families were more likely than other BCFH-positive and BCFH-negative peers to report themselves at increased risk (P < .001). In all groups, perceived risk of breast cancer was associated with older age. Higher breast cancer-specific distress among adolescent girls was associated with higher self-perceived risk of breast cancer and higher maternal breast cancer-specific distress. CONCLUSION: Adolescent girls from BRCA1/2-positive and breast cancer families have higher self-esteem and do not have poorer psychosocial adjustment than peers. However, they do experience greater breast cancer-specific distress and perceived risk of breast cancer, particularly among older girls. Understanding the impact is important to optimize responses to growing up in families at familial and genetic risk for breast cancer, particularly given the debate over the genetic testing of children for cancer susceptibility in adulthood.

Condom use with serious and casual heterosexual partners: findings from a community venue-based survey of young adults.

Given the racial/ethnic disparities that characterize STI trends and recent increases in heterosexually transmitted HIV infection in the US, an understanding of factors underlying condom use among young adults in minority communities is vitally important. To this end, this paper presents findings from a community venue-based survey examining the influence of motivations, heuristics, and relationship factors on condom behaviors with serious and casual heterosexual partners in a sample of urban African American and Puerto Rican males and females ages 18-25 (n = 380). Condom use rates at time of last sex were considerably higher with casual partners (n = 87) than with serious (n = 313) partners, 77.9% vs. 38.7%. While dual pregnancy/STI prevention was the most frequently cited reason for use at last sex with casual partners, pregnancy prevention was the most frequently cited reason for use with serious partners. Bivariate conditional logistic regression analyses found two factors to be associated with condom use at last sex with casual partners: use at first sex with the partner and belief that neighborhood peers worried some/a lot about HIV. In contrast, such factors as condom heuristics (e.g., nonuse symbolizes trust), contraceptive status, and markers of emotional intimacy were associated with condom use with serious partners in both bivariate and multivariable analyses.

A qualitative study of contraceptive understanding among young adults.

BACKGROUND: This study describes contraceptive understanding, sources of information and consequences of contraceptive misunderstandings among urban, young adults. STUDY DESIGN: We used qualitative data from 16 focus groups and 53 interviews with Puerto Rican and African American men and women aged 18-25 years from Philadelphia and Hartford. We categorized and compared assertions made about all contraceptive methods' side effects, effectiveness and use using an iterative process. RESULTS: Participants considered contraceptive use worthwhile but felt that it carried risks of problematic side effects and contraceptive failure, with variation among methods. Men knew most about condoms and withdrawal and trusted both more than women. Personal or second-hand experience was the dominant source of information on contraceptive understanding. Misunderstandings about contraception affected their relationships and risk of unintended pregnancy. CONCLUSION: Contraceptive understanding is a powerful determinant of contraceptive use and limits the options perceived by young adults to prevent pregnancy. Research is needed to strengthen contraceptive counseling and outreach in ways that better leverage peer influence.

Strategies for managing the dual risk of sexually transmitted infections and unintended pregnancy among Puerto Rican and African American young adults.

Although young adults in the United States are at increased risk for sexually transmitted infections (STIs) and unintended pregnancy, they do not report high rates of dual-method use (condoms plus other contraception) for prevention. We used prospective qualitative data from 69 urban Puerto Rican and African American individuals aged 18 to 25 years to determine how they managed these risks in their heterosexual relationships during a 4- to 8-week period. Hormonal or long-acting contraceptive use, condoms, and withdrawal were the most common unintended pregnancy prevention strategies; condoms, STI testing, and perceived fidelity were dominant among STI prevention strategies. We need to shift the focus from dual-method use toward a broader concept of dual protection to be more responsive to young adults' concerns, perceptions, and priorities.

Heterosexual anal sex experiences among Puerto Rican and black young adults.

CONTEXT: Heterosexual anal sex is not uncommon in the United States, and it poses risk for STDs. However, who engages in it and why are not well understood, particularly among young adults. METHODS: In 2006-2008, data on sexual health-related topics were collected in surveys (483 respondents) and qualitative interviews (70 participants) with black and Puerto Rican 18-25-year-olds in Hartford and Philadelphia. Bivariate and multivariate analyses of survey data assessed predictors of anal sex with the most recent serious heterosexual partner. Interview transcripts were analyzed for anal sex experiences and reasons for and against engaging in this behavior. RESULTS: Some 34% of survey respondents had had anal sex; this behavior was more common with serious partners than with casual partners (22% vs. 8%). Black respondents were less likely than Puerto Ricans to report anal sex (odds ratio, 0.3); women were more likely to do so than were men (2.9). In the qualitative cohort, perceptions of anal sex as painful and unappealing were the predominant reasons for not having anal sex, whereas sexual pleasure and, in serious relationships, intimacy were the main reasons for engaging in it. Condom use during anal sex was rare and was motivated by STD or hygiene concerns. CONCLUSIONS: Heterosexual anal sex is not an infrequent behavior and should be considered in a broad sexual health context, not simply as an indicator of STD risk. Health providers should address it openly and, when appropriate, as a positive sexual and emotional experience.

Withdrawal attitudes and experiences: a qualitative perspective among young urban adults.

CONTEXT: Withdrawal is a widely used pregnancy prevention practice, but is popularly regarded as ineffective. An in-depth study of withdrawal behaviors would improve understanding of its role in reproductive health care. METHODS: Ninety-five ethnically diverse males and females aged 18-25, recruited through family planning clinics and community outreach in a large U.S. city, participated in semistructured, open-ended interviews in 2006 and 2007. Interviews examined up to six heterosexual relationships and focused on contraceptive attitudes, norms and experiences. Transcripts were reviewed and coded, and key themes related to withdrawal were identified. RESULTS: Withdrawal was a popular contraceptive technique, but opinions on its effectiveness were mixed. Some participants (especially women) expressed anxiety concerning pregnancy risk due to perceived ineffectiveness of withdrawal, and women were concerned about their partner's capacity to consistently withdraw prior to ejaculation. Others described confidence and skill in using withdrawal, and considered it effective. Reasons for use of withdrawal included convenience and dissatisfaction with hormonal contraceptives and condoms. Withdrawal was described as an expected alternative to condoms in both casual and long-term relationships, and as a secondary, or backup, method with use of hormonal contraceptives or condoms. Participants had rarely discussed withdrawal with health care providers; knowledge about the method had generally come from less reliable sources, including peers. CONCLUSIONS: Health care provider discussions with patients about withdrawal could give greater insight into risk behaviors. More informed prevention counseling messages would be helped by better effectiveness estimates and understanding of factors most likely to result in withdrawal failure.