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1.
Health Commun ; : 1-12, 2024 Jun 07.
Article in English | MEDLINE | ID: mdl-38847325

ABSTRACT

Clinician racial bias has been associated with less patient-centered communication, but little is known about how it affects trainees' communication. We investigated genetic counseling students' communication during sessions with Black or White standardized patients (SPs) and the extent to which communication was associated with SP race or student scores on the Race Implicit Association Test (IAT). Sixty students conducted a baseline SP session and up to two follow-up sessions. Students were randomly assigned to a different White or Black SP and one of three clinical scenarios for each session. Fifty-six students completed the IAT. Session recordings were coded using the Roter Interaction Analysis System. Linear regression models assessed the effects of IAT score and SP race on a variety of patient-centered communication indicators. Random intercept models assessed the within-student effects of SP race on communication outcomes during the baseline session and in follow-up sessions (n = 138). Students were predominantly White (71%). Forty students (71%) had IAT scores indicating some degree of pro-White implicit preference. Baseline sessions with White relative to Black SPs had higher patient-centeredness scores. Within-participant analyses indicate that students used a higher proportion of back-channels (a facilitative behavior that cues interest and encouragement) and conducted longer sessions with White relative to Black SPs. Students' stronger pro-White IAT scores were associated with using fewer other facilitative statements during sessions with White relative to Black SPs. Different patterns of communication associated with SP race and student IAT scores were found for students than those found in prior studies with experienced clinicians.

2.
J Genet Couns ; 2024 Feb 02.
Article in English | MEDLINE | ID: mdl-38308411

ABSTRACT

The therapeutic relationship is a key component of successful genetic counseling. In psychotherapy, a strong therapeutic relationship can improve patient health outcomes and a poor relationship can worsen psychological functioning. Investigation of the therapeutic relationship in genetic counseling has shown evidence for a similar pattern. Reliable measurement of the therapeutic relationship is necessary for consistency across studies in the genetic counseling context. One measure that has been adapted for use in genetic counseling is the Working Alliance Inventory (WAI). However, there have been no studies of the factor structure or item-level method bias analyses for the genetic counseling-adapted version of the WAI. The goal of this study was to test the factor structure of the WAI observer version (WAI-O) bond subscale and assess method bias in a genetic counseling context. We hypothesized that differences in factor structures would exist for items that were positively (n = 9) versus negatively (n = 3) worded (reverse coded). Secondary data analysis was performed on two data sets that utilized the WAI-O in genetic counseling contexts. Data set 1 used simulated genetic counseling sessions that were judged by analog clients recruited through crowdsourcing platforms (N = 861). Data set 2 was conducted with genetic counseling clients, and sessions were evaluated by a research team (N = 120). Principal axis factor analysis with oblique oblimin rotation supported a two-factor solution for the WAI-O bond subscale across data sets. Items factored based on wording, with the positively worded items loading together and the negatively worded items loading on the second factor. Confirmatory factor analyses supported the removal of all negatively worded items from the instrument across data sets. Results suggest that the negatively worded items on the WAI-O may be capturing a construct inconsistent with the positively worded items and support rewording and/or excluding them from use for a more reliable measure of the therapeutic bond.

3.
J Genet Couns ; 33(1): 118-123, 2024 02.
Article in English | MEDLINE | ID: mdl-38351603

ABSTRACT

Educational use of clinical simulation is a way for students to immerse themselves within a realistic yet safe and structured environment as they practice clinical skills. It is widely used in healthcare training and evaluation, and there are best practices for design, implementation, debriefing, and assessment. An increasing number of genetic counseling graduate programs use simulation in various ways, ranging from role-plays to working with professional simulated/standardized patient (SP) actors. At this time, there is very little consistency across programs, research on the approaches, and standards by which simulation is incorporated into training. Simulation is an understudied but promising approach for genetic counselor (GC) education and assessment. After graduation, GCs demonstrate their competence as entry-level providers through American Board of Genetic Counseling (ABGC) multiple-choice examination (MCE), along with their participatory clinical encounters from graduate training. Data from genetic counseling and other professions highlight the limitations and biases of MCEs, suggesting they not only fail to accurately capture competency, but also that they disadvantage underrepresented individuals from entering the field. In addition, MCEs are limited as a tool for assessing nuanced counseling and communication skills, as compared to more quantitative scientific knowledge. We propose that innovative, evidence-based approaches such as simulation have the potential to not only enhance learning, but also to allow GCs to better demonstrate competency during training and in relation to the board examination. Collaborative approaches, research, and funding are needed to further explore the viability of routinely incorporating simulation into GC training and assessment.


Subject(s)
Genetic Counseling , Genetic Testing , Humans , Educational Status , Learning , Students
4.
J Community Genet ; 15(1): 59-73, 2024 Feb.
Article in English | MEDLINE | ID: mdl-38032519

ABSTRACT

Latinos in the US suffer health disparities including stage of disease at time of breast or colon cancer diagnosis. Understanding Latinas' causal attributions of breast and colon cancer may provide insight into some of the individual level determinants of cancer disparities in this population. Cultural consensus analysis (CCA) is one way to study causal beliefs. The objective of this study was to describe Latina immigrants' causal attributions of breast and colon cancer. We conducted Spanish-language interviews with 22 Latina immigrants using a qualitative exploratory design comprised of freelisting, ranking, and open-ended questions. Participants freelisted causes and risk factors for breast and colon cancer then ranked risk factors according to their perceived role in the development of each cancer. CCA was conducted on rank orders to identify whether a cultural consensus model was present. Participants answered semi-structured, open-ended questions regarding the risk factors and rankings. Interviews were transcribed and subjected to thematic analysis. CCA showed no consensus around rank of causes for either cancer, and residual agreement analysis suggested the presence of two subcultural groups. "Genetics" and "hereditary factors" ranked first and second on average across participants for both cancers. Based on interview data, participants were less aware of colon cancer than breast cancer. Participants' endorsement of heredity as a cause of breast and colon cancer was similar to beliefs reported in studies of primarily non-Latina populations.

5.
J Genet Couns ; 2023 Sep 25.
Article in English | MEDLINE | ID: mdl-37746670

ABSTRACT

Contracting is a skill used by genetic counselors (GCs) to establish a shared vision for the session. Ensuring that patients and GCs are aligned on expectations for the encounter allows GCs to meet patient needs and support patient autonomy. Although contracting is described in the practice-based competencies (PBCs), the process has not been systematically observed in practice. We sought to further elucidate the skills used for contracting within genetic counseling sessions through directed content analysis of transcripts from 148 simulated prenatal and cancer genetic counseling sessions. An a priori codebook and rating scale were developed based on four contracting sample skills described in the PBCs: (a) describing the genetic counseling process, (b) eliciting client concerns, (c) applying client concerns to a session agenda, (d) modifying the agenda in response to emerging concerns. The rating scale described the quality of each skill on a 4-point scale of "absent," "minimal," "adequate," and "excellent." The codebook and rating scale were pilot tested with 40% of transcripts (n = 60). Three authors independently coded and rated the final 60% of transcripts (n = 88), resolving discrepancies via a consensus process. We found that the four PBC skills were present in most sessions (88%-98%), and on average, GCs received "adequate" scores on all four skills. We also identified three additional components of contracting not described in the PBCs: assessing whether client concerns were met, inviting to interrupt, and providing opportunity for partner concerns. This study represents the first attempt to evaluate GC performance of a PBC during a genetic counseling session. Our findings demonstrate that the PBC sample contracting skills reflect practice and suggest that they can be used in assessment of the genetic counseling contracting process. This type of analysis could be adapted in the future to provide support for other standards of practice in the genetic counseling field.

6.
J Genet Couns ; 32(3): 685-697, 2023 06.
Article in English | MEDLINE | ID: mdl-36806333

ABSTRACT

We defined orienting language in genetic counseling sessions as 'language intended to direct focus to a particular aspect of the counseling process; a physical, emotional, or cognitive space; or an outcome'. This is a concept expanding on the idea of 'orientation' statements in the genetic counseling literature. We propose that orienting language is an important component of effective communication in the genetic counseling process. Our goals were to document the presence of orienting language in genetic counseling sessions with practicing genetic counselors and simulated clients, categorize types of orienting language, and evaluate the purpose of this language. A sample of Genetic Counseling Video Project videotape transcripts was evaluated through consensus coding for orienting language. Orienting language was found to be abundant in the dataset evaluated. Each excerpt was coded for orienting language Strategies and Purpose. The six categories of Strategy codes identified were Logical Consistency, Providing Context, Guidance, Structuring the Session, Anchoring, and Procedural. The six categories of Purpose codes were Counselee Understanding, Guidance, Engagement, Promoting Effective Counselor/Counselee Interactions, Counselee Adaptation, and Relationship Building. Results support our expanded definition of orienting language, which was similar in both cancer and prenatal specialties and across years of counselor experience. Orienting language acts as a series of signposts to help clients navigate the sometimes complex and unfamiliar territory of a genetic counseling session. The introduction of this term into the genetic counseling literature allows its use by genetic counselors to be further evaluated and potentially incorporated into genetic counselor training.


Subject(s)
Counselors , Neoplasms , Female , Pregnancy , Humans , Genetic Counseling/psychology , Counseling , Language , Emotions , Neoplasms/genetics
7.
J Cancer Educ ; 37(3): 683-693, 2022 06.
Article in English | MEDLINE | ID: mdl-32975747

ABSTRACT

The use of biobanks may accelerate scientists' chances of developing cures and treatments that are tailored to individuals' biological makeup-a function of the precision medicine movement. However, given the underrepresentation of certain populations in biobanks, the benefits of these resources may not be equitable for all groups, including older, multi-ethnic populations. The objective of this study was to better understand older, multi-ethnic populations' (1) perceptions of the value of cancer biobanking research, (2) study design preferences, and (3) guidance on ways to promote and increase participation. This study was designed using a community-based participatory research (CBPR) approach and involved eight FGDs with 67 older (65-74 years old) black and white residents from Baltimore City and Prince George's County, MD. FGDs lasted between 90 and 120 min, and participants received a $25 Target gift card for their participation. Analysis involved an inductive approach in which we went through a series of open and axial coding techniques to generate themes and subthemes. Multiple themes emerged from the FGDs for the development of future cancer-related biobanking research including (1) expectations/anticipated benefits, (2) biobanking design preferences, and (3) ways to optimize participation. Overall, most participants were willing to provide biospecimens and favored cancer-related biobank. To increase participation of older, diverse participants in biobanking protocols, researchers need to engage older, diverse persons as consultants in order to better understand the value of biobanking research to individuals from the various populations. Scientists should also incorporate suggestions from the community on garnering trust and increasing comfort with study design.


Subject(s)
Biomedical Research , Neoplasms , Aged , Biological Specimen Banks , Community-Based Participatory Research , Humans , Neoplasms/prevention & control , Research Personnel
8.
J Genet Couns ; 30(6): 1582-1590, 2021 12.
Article in English | MEDLINE | ID: mdl-33876469

ABSTRACT

Although genetic counseling is traditionally done through in-person, one-on-one visits, workforce shortages call for efficient result return mechanisms. Studies have shown that telephone and in-person return of cancer genetic results are equivalent for patient outcomes. Few studies have been conducted with other modes, result types or racially diverse participants. This study explored participants' perspectives on receiving pharmacogenomic results by mail. Two experienced moderators facilitated six focus groups with 49 individuals who self-identified primarily as African-American and consented to participate in a genome sequencing cohort study. Participants were given a hypothetical pharmacogenomic result report (positive for c.521T>C in SLCO1B1). An accompanying letter explained that the result was associated with statin intolerance along with a recommendation to share it with one's doctor and immediate relatives. Participants reacted to the idea of receiving this type of result by mail, discussing whether the letter's information was sufficient and what they predicted they would do with the result. Two researchers coded the focus group transcripts and identified themes. Many participants thought that it was appropriate to receive the result through the mail, but some suggested a phone call alerting the recipient to the letter. Others emphasized that although a letter was acceptable for disclosing pharmacogenomic results, it would be insufficient for what they perceived as life-threatening results. Most participants found the content sufficient. Some participants suggested resources about statin intolerance and warning signs be added. Most claimed they would share the result with their doctor, yet few participants offered they would share the result with their relatives. This exploratory study advances the evidence that African-American research participants are receptive to return of certain genetic results by approaches that do not involve direct contact with a genetic counselor and intend to share results with providers. ClinSeq: A Large-Scale Medical Sequencing Clinical Research Pilot Study (NCT00410241).


Subject(s)
Black or African American , Pharmacogenetics , Black or African American/genetics , Black or African American/psychology , Cohort Studies , Focus Groups , Humans , Liver-Specific Organic Anion Transporter 1 , Pilot Projects , Postal Service
9.
J Genet Couns ; 30(1): 11-21, 2021 02.
Article in English | MEDLINE | ID: mdl-33554391

ABSTRACT

The concept of therapeutic alliance is central to genetic counseling as the mechanism through which the outcomes of empowerment and effective coping are likely to be achieved. To date, there have been no published systematic assessments of the therapeutic relationship in genetic counseling. We adapted a previously validated measure of the therapeutic alliance to genetic counseling and assessed its reliability and validity. Participants were enrolled in a clinical genomic study where they were randomized to receive education about carrier results via a Web platform or via a genetic counselor and then further randomized to receive genetic counseling (without additional education) or not. We rated the therapeutic alliance from audio recordings of 120 genetic counseling sessions. We modified the observer version of the Working Alliance Inventory (WAI-O), initially designed to assess therapeutic relationships in psychotherapy. We examined internal consistency reliability by calculating Cronbach's alpha and inter-rater reliability through both percent agreement and Gwet's alternative agreement coefficient (AC). Regression analyses were used to evaluate the relationship of WAI-O scores with session length and with the designation of the session as one in which prior education was delivered by the genetic counselor or not. The adapted scale had high-reliability characteristics with agreement of 88%-93%, Gwet's AC of 0.84-0.90, and Cronbach's alpha of 0.89-0.93 for the three WAI-O subscales (bonds, goals, and tasks). Although there was no difference in alliance based on whether prior education was provided by the genetic counselor, the total WAI-O score significantly increased with increasing session length (beta =0.667, p<.001), providing preliminary evidence of construct validity. The WAI-O that we have adapted can be used reliably with two independent raters to assess the therapeutic alliance in studies of genetic counseling. The initial evidence for construct validity is promising and should be reassessed in future genetic counseling studies using the WAI-O.


Subject(s)
Therapeutic Alliance , Genetic Counseling , Humans , Professional-Patient Relations , Psychotherapy , Reproducibility of Results
10.
J Community Genet ; 10(4): 471-480, 2019 Oct.
Article in English | MEDLINE | ID: mdl-30877487

ABSTRACT

This study evaluated factors associated with willingness to provide biospecimens for cancer genetic research among African American cancer survivors. A total of 200 African American adults diagnosed with breast, colon, and/or prostate cancers completed a self-administered survey. Family history information, beliefs about cancer research, cancer genetics and disparities knowledge, willingness to provide a biospecimen, and demographics were obtained. Chi-square, independent samples t tests, and logistic regression analyses were performed. Overall, 79% of this sample was willing to provide a biospecimen for cancer genetics research. Independent associations of willingness to provide a biospecimen existed among demographics (males (p = 0.041)), those who believed in the importance of genetic causes of cancer (p < 0.001), individuals who believe it is important to participate in genetics research (p < 0.001), and those who indicated they would participate in genetics research to help future generations (p = 0.026). Overall, 12.5-56% of participants demonstrated some level of genetics and cancer disparities. This study identified factors that may be incorporated into future research interventions to engage the African American cancer population in cancer genetics biobanking research.

11.
J Health Commun ; 23(8): 807-814, 2018.
Article in English | MEDLINE | ID: mdl-30325721

ABSTRACT

The objective of this study was to identify how features of Alzheimer's disease (AD) genetic risk disclosure communication relate to patient and visit companion satisfaction. We conducted secondary analyses of 79 session recordings from the fourth REVEAL Study, a randomized-controlled trial of AD genetic risk disclosure among patients with mild cognitive impairment. Patient and companion satisfaction were ascertained from postdisclosure surveys. The Roter Interaction Analysis System (RIAS) was used to code triadic communication between the counselor, patient, and companion. High satisfaction was evident for 24% of patients (N = 19) and 48% of companions (N = 38). Multivariate logistic regressions showed that high patient satisfaction was associated with patients' expression of emotions (OR = 1.1, 95% CI: 1.0-1.1) and companions' questions about psychosocial and lifestyle topics (OR = 1.8, 95% CI: 1.1-2.8). High companion satisfaction was positively related to the RIAS overall patient-centeredness score for the session (OR = 4.0, 95% CI: 1.0-15.6) (all p-values <0.05). Communication predictors of patient and companion satisfaction reflect specific or summary indicators of patient-centeredness. Findings also suggest that visit companions positively influence patient satisfaction. The study results support the growing literature and policy attention directed toward delivering family-centered care.


Subject(s)
Alzheimer Disease/genetics , Communication , Disclosure , Genetic Predisposition to Disease , Patient Satisfaction/statistics & numerical data , Physician-Patient Relations , Adult , Aged , Aged, 80 and over , Family/psychology , Female , Friends/psychology , Health Care Surveys , Humans , Male , Middle Aged , Young Adult
12.
J Psychosoc Oncol ; 36(3): 350-363, 2018.
Article in English | MEDLINE | ID: mdl-29424665

ABSTRACT

PURPOSE: The objective was to explore the relationships among cognitive appraisals of prostate cancer (challenge, threat, and harm/loss), social comparisons, and quality of life in men previously diagnosed. Design, Sample, & Methods: Men who had participated in prostate cancer support groups completed a cross-sectional questionnaire (N = 189). Multivariable linear regression was used to evaluate social comparisons as mediators of quality of life while controlling for uncertainty and optimism. FINDINGS: Positive and negative social comparisons were parallel mediators of the relationships between challenge or threat appraisals and quality of life, while only negative social comparisons mediated the relationship between harm/loss appraisals and quality of life. CONCLUSIONS: These findings demonstrate the importance of social comparisons in accounting for the effect of cognitive appraisals of prostate cancer on quality of life among men in support groups. Implications for Psychosocial Providers: Interventions to improve quality of life could address reduction of maladaptive comparisons, a strategy that could be tailored based on the patient's appraisal of prostate cancer.


Subject(s)
Prostatic Neoplasms/psychology , Quality of Life/psychology , Self-Help Groups , Social Perception , Aged , Cross-Sectional Studies , Humans , Male , Prostatic Neoplasms/diagnosis , Surveys and Questionnaires
13.
Fam Cancer ; 17(4): 485-493, 2018 10.
Article in English | MEDLINE | ID: mdl-29209897

ABSTRACT

Women who carry BRCA1/2 mutations have a significantly elevated risk for breast and ovarian cancer. The positive test result and subsequent decisions about risk reducing behaviors can evoke distress, anxiety and worry. Psychological adaptation, or the process of coming to terms with the implications of a health threat, is an understudied construct in BRCA1/2 carriers. Little is known about adaptation and how it relates to other aspects of living at high risk for cancer. Even less is understood about adaptation among partners of BRCA1/2 carriers, and its relationship to adaptation in high risk individuals. Women at increased risk of breast/ovarian cancer (N = 103) and a subset of partners (N = 39) completed questionnaires that assessed risk management decisions (e.g. screening, risk-reducing surgery), dyadic coping, and the outcome of psychological adaptation. Women who had undergone risk-reducing mastectomy (RRM) had significantly higher levels of adaptation than those who had not (t = 5.5, p < 0.001, d = 1.10). Partners of women who had undergone RRM also had higher levels of adaptation than partners of women who had not undergone RRM (t = 3.7, p = 0.01, d = 0.96), though this association was not statistically significant when controlling for carriers' adaptation. Undergoing risk-reducing oophorectomy was not associated with adaptation for BRCA1/2 carriers or their partners. Risk-reducing mastectomy is a significant event in the process of adapting to life at risk for hereditary cancer. Further, adaptation among partners is highly related to adaptation in carriers. These results aid in the understanding of the experience of couples living with cancer risk and the medical decisions related to adaptation.


Subject(s)
Adaptation, Psychological , Breast Neoplasms/psychology , Mastectomy/psychology , Ovarian Neoplasms/psychology , Adult , BRCA1 Protein/genetics , BRCA2 Protein/genetics , Breast Neoplasms/genetics , Breast Neoplasms/prevention & control , Female , Genetic Predisposition to Disease , Genetic Testing , Heterozygote , Humans , Male , Middle Aged , Mutation , Ovarian Neoplasms/genetics , Ovarian Neoplasms/prevention & control , Ovariectomy/psychology
14.
Patient Educ Couns ; 101(5): 817-823, 2018 05.
Article in English | MEDLINE | ID: mdl-29203084

ABSTRACT

OBJECTIVES: To determine the impact of genetic counselor (GC) communication on cognitive and emotional processing of Alzheimer's disease (AD) risk information during discussions with patients with clinical diagnoses of mild cognitive impairment and their companion. METHODS: 79 recordings and transcripts of AD risk disclosure sessions collected as part of the fourth REVEAL Trial were coded using the Roter Interaction Analysis System (RIAS) and the Linguistic Inquiry Word Count (LIWC). Multilevel analyses were used to determine the association between GCs' use of communication facilitation strategies and patient and companion use of words indicative of cognitive and emotional processing. RESULTS: GC used somewhat more cognitive (14%) than emotional (10%) facilitation strategies. Both patients and companions used more words indicative of cognitive (18% and 17%) than emotional (6% and 5%) processing. GC use of facilitative strategies and patient and companion use of cognitive and emotional processing words were significantly associated in both unadjusted and adjusted models (all p-values<0.01). CONCLUSIONS: GCs' use of facilitative strategies assist in cognitive and emotional processing in a way that may be linked to therapeutic benefit. PRACTICE IMPLICATIONS: These findings highlight mechanisms through which GCs may assist patients and companions to better understand and cope with risk information.


Subject(s)
Alzheimer Disease/genetics , Cognition , Cognitive Dysfunction/diagnosis , Communication , Counselors/psychology , Disclosure , Emotions , Family/psychology , Genetic Counseling/methods , Professional-Patient Relations , Adult , Aged , Aged, 80 and over , Alzheimer Disease/diagnosis , Female , Genetic Counseling/psychology , Genetic Predisposition to Disease , Humans , Male , Middle Aged , Office Visits
15.
Patient Educ Couns ; 100(5): 927-935, 2017 05.
Article in English | MEDLINE | ID: mdl-28012682

ABSTRACT

OBJECTIVE: To describe the impact of genetic information on Alzheimer's disease (AD) risk communication to patients with mild cognitive impairment (MCI) and their visit companions. METHODS: Participants of the fourth REVEAL Study trial were randomized to receive AD risk assessments with or without genotype results. We coded 79 audio recorded risk disclosure sessions with the Roter Interaction Analysis System. Multilevel analyses explored differences in communication when disclosed risks were based on age and MCI diagnosis alone or in addition to APOE genotype status. RESULTS: The addition of genotype results diminished the patient-centered nature of the sessions (p<0.001). When ε4 positive relative to ε4 negative results were disclosed, visit companions were more verbally active (p<0.05), disclosed more medical information (p<0.05), were more positive verbally and non-verbally (p<0.05) and were more proactive in setting the visit agenda (p<0.05). CONCLUSIONS: Delivery of complex genetic risk information reduces the patient-centeredness of disclosure sessions. Visit companions are more actively engaged in session communication when patients are at increased genetic risk for AD. PRACTICE IMPLICATIONS: AD risk discussions can be improved by supporting the positive role of visit companions and addressing the challenges inherent in the delivery of complex genetic information in a patient-centered manner.


Subject(s)
Alzheimer Disease/genetics , Cognitive Dysfunction , Communication , Genetic Counseling , Physician-Patient Relations , Proxy , Truth Disclosure , Adult , Aged , Aged, 80 and over , Female , Genetic Predisposition to Disease , Humans , Male , Middle Aged , Office Visits , Patient-Centered Care , Professional-Patient Relations
16.
Patient Educ Couns ; 99(11): 1873-1879, 2016 11.
Article in English | MEDLINE | ID: mdl-27373960

ABSTRACT

OBJECTIVE: The objective of this study was to investigate factors related to family functioning and adaptation in caregivers of individuals with Rett syndrome (RS). METHODS: A cross-sectional quantitative survey explored the relationships between demographics, parental self-efficacy, coping methods, family functioning and adaptation. A forward-backward, step-wise model selection procedure was used to evaluate variables associated with both family functioning and adaptation. Analyses also explored family functioning as a mediator of the relationship between other variables and adaptation. RESULTS: Bivariate analyses (N=400) revealed that greater parental self-efficacy, a greater proportion of problem-focused coping, and a lesser proportion of emotion-focused coping were associated with more effective family functioning. In addition, these key variables were significantly associated with greater adaptation, as was family functioning, while controlling for confounders. Finally, regression analyses suggest family functioning as a mediator of the relationships between three variables (parental self-efficacy, problem-focused coping, and emotion-focused coping) with adaptation. CONCLUSION: This study demonstrates the potentially predictive roles of expectations and coping methods and the mediator role of family functioning in adaptation among caregivers of individuals with RS, a chronic developmental disorder. PRACTICE IMPLICATIONS: A potential target for intervention is strengthening of caregiver competence in the parenting role to enhance caregiver adaptation.


Subject(s)
Adaptation, Psychological , Caregivers/psychology , Family Relations , Family/psychology , Parents/psychology , Rett Syndrome/psychology , Activities of Daily Living/psychology , Adult , Child , Cross-Sectional Studies , Emotions , Female , Humans , Male , Middle Aged , Quality of Life , Self Efficacy , Social Support , Stress, Psychological , Surveys and Questionnaires
17.
J Clin Immunol ; 36(2): 123-33, 2016 Feb.
Article in English | MEDLINE | ID: mdl-26873708

ABSTRACT

PURPOSE: The clinical immunology literature is punctuated with research on psychosocial dimensions of illness. Studies investigating the lived experiences and stated needs of patients with primary immune deficiencies and their families are essential to improving clinical management and determining the research questions that matter to patients and other stakeholders. Yet, to move the field forward, a systematic review of literature and proposed agenda is needed. METHODS: A systematic review was conducted via PubMed and Scopus to include original research on psychological, social, or behavioral aspects of primary immune deficiencies published between 1999 and 2015. A Title/Abstract keyword search was conducted, 317 candidate article abstracts were manually reviewed, and forward/backward reference searches were completed. RESULTS: Twenty-nine studies met inclusion criteria. These illuminate the complex psychological, social, and emotional experiences of primary immune deficiency. Themes included the potential for negative psychosocial impact from disease; adaptation over time; the multi-dimensional assessments of quality of life; familial impact; the important roles of hope, developing a sense of control, social support; and addressing anxiety/depression in our patients and their families. Methodological considerations and areas for improvement are discussed. CONCLUSION: We propose the research agenda focus on study creativity and rigor, with improved engagement with existing literature and critical study design (e.g., methodology with adequate statistical power, careful variable selection, etc.). This review highlights opportunities to advance psychosocial research and bring a brighter future to clinicians, researchers, and families affected by primary immune deficiency.


Subject(s)
Immunologic Deficiency Syndromes/epidemiology , Immunologic Deficiency Syndromes/psychology , Quality of Life , Humans
18.
J Health Commun ; 20 Suppl 2: 60-8, 2015.
Article in English | MEDLINE | ID: mdl-26513032

ABSTRACT

This study was designed to evaluate the impact of an interactive computer program developed to empower prenatal communication among women with restricted literacy skills. A total of 83 women seeing 17 clinicians were randomized to a computer-based communication activation intervention (Healthy Babies Healthy Moms [HBHM]) or prenatal education (Baby Basics [BB]) prior to their prenatal visit. Visit communication was coded with the Roter Interaction Analysis System, and postvisit satisfaction was reported. Participants were on average 24 years of age and 25 weeks pregnant; 80% were African American. Two thirds scored ≤8th grade on a literacy screener. Women with literacy deficits were more verbally active, disclosed more medical and psychosocial/lifestyle information, and were rated as more dominant by coders in the HBHM group relative to their counterparts in the BB group (all ps < .05). Clinicians were less verbally dominant and more patient centered with literate HBHM relative to BB group women (p < .05); there was a similar, nonsignificant trend (p < .1) for lower literate women. Clinicians communicated less medical information and made fewer reassurance statements to lower literate women in the HBHM relative to the BB group (p < .05). There was a trend toward lower visit satisfaction for women with restricted literacy in the HBHM relative to the BB group (p < .1); no difference in satisfaction was evident for more literate women. The HBHM intervention empowered communication of all women and facilitated verbal engagement and relevant disclosure of medical and psychosocial information of women with literacy deficits. Satisfaction, however, tended to be lower for these women.


Subject(s)
Communication , Literacy/statistics & numerical data , Patient Education as Topic/methods , Physician-Patient Relations , Power, Psychological , Prenatal Care , Adolescent , Adult , Female , Follow-Up Studies , Humans , Patient Satisfaction/statistics & numerical data , Pregnancy , Program Evaluation , User-Computer Interface , Young Adult
19.
Health Psychol ; 34(2): 111-9, 2015 Feb.
Article in English | MEDLINE | ID: mdl-25622081

ABSTRACT

OBJECTIVE: Implicit racial attitudes are thought to shape interpersonal interactions and may contribute to health-care disparities. This study explored the relationship between genetic counselors' implicit racial attitudes and their communication during simulated genetic counseling sessions. METHOD: A nationally representative sample of genetic counselors completed a web-based survey that included the Race Implicit Association Test (IAT; Greenwald, McGhee, & Schwartz, 1998; Cooper et al., 2012). A subset of these counselors (n = 67) had participated in an earlier study in which they were video recorded counseling Black, Hispanic, and non-Hispanic White SCs about their prenatal or cancer risks. The counselors' IAT scores were related to their session communications through robust regression modeling. RESULTS: Genetic counselors showed a moderate to strong pro-White bias on the Race IAT (M = 0.41, SD = 0.35). Counselors with stronger pro-White bias were rated as displaying lower levels of positive affect (p < .05) and tended to use less emotionally responsive communication (p < .10) when counseling minority SCs. When counseling White SCs, pro-White bias was associated with lower levels of verbal dominance during sessions (p < .10). Stronger pro-White bias was also associated with more positive ratings of counselors' nonverbal effectiveness by White SCs. CONCLUSION: Implicit racial bias is associated with negative markers of communication in minority client sessions and may contribute to racial disparities in processes of care related to genetic services.


Subject(s)
Attitude of Health Personnel , Communication , Genetic Counseling/psychology , Racism/psychology , Adult , Black or African American , Female , Healthcare Disparities , Hispanic or Latino , Humans , Interpersonal Relations , Male , Middle Aged , Patient Satisfaction , White People
20.
Health Psychol ; 34(2): 120-9, 2015 Feb.
Article in English | MEDLINE | ID: mdl-25622082

ABSTRACT

OBJECTIVE: Literacy deficits and underutilization of medical services have been linked to health disparities among minorities, and this appears especially relevant for the Latino population. Given the increasing importance of genetics, assessment of genetic health literacy may direct future efforts to better serve this vulnerable population. The current study was designed to contribute to this area by translating and validating a Spanish-language genetic health literacy measure. METHOD: This was a cross-sectional study involving an interviewer-administered questionnaire. Eligible individuals were Latinos between the ages of 18 and 75 residing in Maryland, who self-reported Spanish as their primary language, recruited through convenience sampling. The genetic health literacy measure components were adapted from existing English-language measures [Erby, Roter, Larson, & Cho's (2008) Rapid Estimate of Adult Literacy in Genetics (REAL-G) and Hooker et al.'s (2014) Genetic Literacy and Comprehension]. An existing Spanish-language general health literacy measure was used to establish preliminary concurrent validity [Lee, Bender, Ruiz, & Cho's (2006) SAHLSA]. RESULTS: 116 individuals completed the assessment. The Spanish-language REAL-G (REAL-G-Sp) was found to correlate well with the SAHLSA (Pearson's r = .77, p < .01). A cut-off score of 59 (out of 62) distinguished low versus high genetic health literacy with a sensitivity of 86% and specificity of 71%, identifying 28% of participants as having inadequate genetic health literacy. CONCLUSIONS: The REAL-G-Sp was found to have preliminary concurrent validity with an existing health literacy measure in the Latino population residing in Maryland. Significant proportions of this population are predicted to have limitations in genetic health literacy, even when information is provided in Spanish.


Subject(s)
Genetics , Health Literacy , Hispanic or Latino/psychology , Language , Surveys and Questionnaires , Adolescent , Adult , Aged , Comprehension , Cross-Sectional Studies , Female , Humans , Male , Maryland , Middle Aged , Young Adult
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