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1.
Am J Hosp Palliat Care ; : 10499091241228835, 2024 Feb 06.
Article in English | MEDLINE | ID: mdl-38321708

ABSTRACT

BACKGROUND: Hospice family caregivers (HFCGs) support the needs of their loved ones but are at risk of developing distress and anxiety. NOVELA is a four-chapter telenovela-style educational video to support topics related to hospice caregiving. Telehealth visits are scheduled in 4 weekly sessions consisting of a chapter and subsequent discussion with an interventionist. This feasibility pilot study tested NOVELA's effect to change HFCGs' outcomes, session and outcome measure completion (defined a priori as >70%). METHODS: This is a single-group pretest-posttest study of HFCGs of care recipients with PPS score >20% from 3 hospices in the U.S. Mid-Atlantic region. At baseline and at final posttest, participants completed a web-based survey assessing 3 outcomes: anxiety, self-efficacy, and satisfaction with intervention. Descriptive, t-test, and chi-square statistics were computed. RESULTS: Participants in our study (N = 59) were mainly collage educated, White, female, adult children of home-bound people with a non-cancer diagnosis. Outcomes changed in the expected direction (P > .05) with higher self-efficacy (Cohen's d = -.08 [95% CI -.4 to .2) and lower anxiety (Cohen's d = .2 [95% CI -.1 to .5]) scores from final to baseline, 86% of HFCGs were satisfied or very satisfied with NOVELA, session (33/59) and outcome measure (43/59) completion averaged 68%. CONCLUSION: Encouraging trends in NOVELA's estimation of effect suggests that NOVELA may buffer stressful aspects of hospice caregiving. However, further refinement of NOVELA is needed. Supporting HFCGs through supportive educational interventions may reduce distress and anxiety with broad implications for quality improvement.

2.
Am J Hosp Palliat Care ; 40(4): 409-415, 2023 Apr.
Article in English | MEDLINE | ID: mdl-35771204

ABSTRACT

BACKGROUND: Recruitment and attrition are inherently challenging issues in hospice research. We sought to describe strategies of recruitment, retention, and delivery of NOVELA (short for telenovela), an intervention for hospice family caregivers (HFCG). METHODS: Statistics were kept of every referral, consenting participant, visit session, and intervention activity. We used the Social Marketing Mix Framework to describe recruiting strategies employed and lessons learned. RESULTS: Two hospices in the U.S. Mid-Atlantic region referred 47 HFCG and N = 20 agreed to participate, out of which 50% (N = 10) completed all 4 sessions with an average of 2.8 sessions per person, each lasting an average duration of 13.5 minutes (range 8.0-25.7). The main reason for missing a session was a patient's death (N = 8). Successful recruitment strategies employed in NOVELA included: (a) intensive start-up hospice engagement, (b) remote recruitment and delivery of NOVELA, and (c) scheduling flexibility to work around caregivers' other demands. CONCLUSION: The recruitment and intervention delivery had successes and challenges resulting in the identification of multiple opportunities to strengthen our strategy and inform future studies with HFCGs.


Subject(s)
Hospice Care , Hospices , Humans , Caregivers
3.
Curr Oncol ; 29(6): 4090-4103, 2022 06 06.
Article in English | MEDLINE | ID: mdl-35735435

ABSTRACT

Obesity following breast cancer diagnosis is associated with poor overall survival. Understanding weight trajectories will help inform breast cancer survivors at greater risk of weight gain, and those who would benefit from earlier anti-obesity interventions. We performed a retrospective chart review of women from the Breast Cancer Program Longitudinal Repository (BCPLR) at Johns Hopkins diagnosed with hormone receptor-positive Stage I-III breast cancer from 2010 to 2020. We investigated obesity (measured by body mass index [BMI]) over time, patient and tumor characteristics, as well as treatment and recurrence. We observed a significant ≥5% increase in BMI from diagnosis to most recent follow-up (p = 0.009), particularly among those who were overweight at diagnosis (p = 0.003). Additionally, among those up to 5 years since diagnosis, there was a significant association between experiencing a ≥0.1 kg/m2 increase per year since diagnosis and baseline BMI status (p = 0.009). A ≥0.6 kg/m2 decrease in BMI was observed for participants with obesity at diagnosis (p = 0.006). Our study highlights (i) the significant burden of obesity in women with a history of breast cancer and (ii) higher risks for increases in BMI and shifts in class of obesity among women who are overweight at diagnosis.


Subject(s)
Breast Neoplasms , Overweight , Breast Neoplasms/pathology , Female , Humans , Obesity , Overweight/complications , Retrospective Studies , Risk Factors , Weight Gain
4.
J Palliat Med ; 25(6): 945-951, 2022 06.
Article in English | MEDLINE | ID: mdl-35446674

ABSTRACT

Background: Telenovelas show significant promise as a mode of education that could potentially enhance hospice family caregivers' (HFCG) ability to manage distress or pain for themselves and the care recipient. Objectives: We sought to understand HFCGs' perceived benefits and challenges of NOVELA using the Levels of Kirkpatrick as a conceptual framework. Setting/Subjects: HFCGs from two hospices in the Mid-Atlantic region of the United States. Measurements: Semistructured interviews were conducted to understand perceptions of HFCGs on the benefits and challenges of the NOVELA intervention. Results: Participants (N = 20) in our study were mainly homebound, well educated, White female, and adult children of people with advanced cancer who reported mild anxiety and moderate self-efficacy at baseline. Three unique themes were identified: acceptability of NOVELA, usability and relevance of NOVELA, and the effect of NOVELA. According to our conceptual model, the intervention positively affects all three adult learning categories: reaction, learning, and behavior. Conclusion: Our findings suggest that HFCGs support the proposed NOVELA intervention and it appears to be an acceptable educational tool during hospice care (NCT04533594).


Subject(s)
Hospice Care , Hospices , Adult , Female , Humans , Caregivers , Pain , Pain Management , United States
5.
Complement Ther Med ; 57: 102661, 2021 Mar.
Article in English | MEDLINE | ID: mdl-33418067

ABSTRACT

Peer navigators (PNs), including trained cancer survivor volunteers, can be an important resource to the cancer care team in reducing barriers to screening, treatment, and psychosocial care among underserved communities through their roles in outreach, education, advocacy, and peer support. As cancer centers face growing patient demand and evidence for integrating complementary therapies into conventional care, opportunities to envision new roles for PN arise. Based on psychosocial assessments conducted at an academic cancer center serving the low-income population of Bronx, NY, we found strong interest in both providing (44 %) and receiving (76 %) peer support, as well as in (76 %) mind-body practices (e.g., meditation). In research, these mind-body modalities and peer support have both been found to improve many aspects of physical and emotional outcomes in cancer patients, but none has looked at PNs as a potential resource for delivering such mind-body interventions. Towards this end, we conducted two pilot studies to train PN from an onsite peer navigation program called the BOLD Buddy Program, to deliver a well-defined, easy to learn, and culturally-aligned mind-body practice, i.e., Loving Kindness (LK) Meditation, to each other and to patients. Incorporating comparison to professional meditation instructors, our pilot work demonstrated that peer-lead LKM was associated with benefits to emotional well-being, relaxation, satisfaction, and perceived usability and that PNs were equally well-received in delivering LK as their professional counterparts. Evaluating 8 domains of feasibility using standardized measures, we were able to demonstrate that peer-lead LK was: in demand, acceptable, implementable, practical, adaptable, adoptable, expandable, and promising in efficacy.


Subject(s)
Meditation , Emotions , Humans , Mental Health , Pilot Projects , Relaxation
6.
Health Psychol ; 39(10): 891-899, 2020 Oct.
Article in English | MEDLINE | ID: mdl-32686952

ABSTRACT

OBJECTIVE: Sexual minority women are at heightened risk for breast and cervical cancer and are less likely than heterosexual women to obtain timely screenings for breast and cervical cancer. This study tested hypotheses about potential factors that contribute to nonadherence to these screenings among sexual minority women. METHOD: Sexual minority women living in the United States aged 18 to 74 who met other eligibility criteria (n = 1,115) were recruited to complete an online questionnaire. Screening utilization, demographic information, sexual orientation, and health care indicators were collected. Variables linked to minority stress were assessed: stigma consciousness, internalized homophobia, rejection sensitivity, fear of negative evaluation, and concealment of sexual orientation from one's health care provider. Logistic regression models tested whether these psychological variables were independently associated with nonadherence for Papanicolaou (Pap) test and breast cancer screening. RESULTS: The variable of concealment had the strongest positive independent association with failure to obtain timely Pap tests. Among women who had a general physical in the last year, concealment, stigma consciousness, rejection sensitivity, and fear of negative evaluation were all positively associated with lower rates of timely Pap tests. Among all women, these psychological variables were positively associated with never obtaining a Pap test and concealment was also negatively associated with clinical breast exam adherence. CONCLUSIONS: Psychological barriers and concealment of sexual identity may hinder adherence to screening guidelines among some sexual minority women. Strategies facilitating positive experiences of disclosure to health care providers and addressing psychological factors related to minority stress could promote adherence. (PsycInfo Database Record (c) 2020 APA, all rights reserved).


Subject(s)
Breast Neoplasms/psychology , Social Stigma , Uterine Cervical Neoplasms/psychology , Adolescent , Adult , Aged , Early Detection of Cancer , Female , Humans , Middle Aged , Sexual and Gender Minorities , Young Adult
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