Family First: Asian Americans' Attitudes and Behaviors Toward Deceased Organ Donation.

Asian Americans have substantial transplantation needs but have the lowest rates of organ donation in the USA. As the shortage of transplantable organs persists, the rate of deceased donation by Asian Americans has not kept pace with that of the general population. This report is a qualitative study of organ donation-related attitudes and beliefs of three Asian ethnic groups located in the greater Philadelphia metropolitan area: Chinese, Filipino, and Vietnamese Americans. Guided by a Community Advisory Board representing these groups, we conducted 9 focus groups with a total of 64 participants and subsequent thematic analyses. Six major themes emerged: (1) positive views about organ donation, (2) previous exposure to organ donation, (3) primacy of the family in decision making, (4) mistrust of the healthcare and donation systems, (5) religious and cultural beliefs concerning the body, and (6) isolation from mainstream American society. Although participants expressed commonalities and beliefs in line with other American racial and ethnic groups, we also identified unique beliefs, such as familial influence, religious and cultural concerns regarding body wholeness and the dead, and underlying reasons for medical mistrust, such as a belief in a black market. The study's findings challenge the dominant educational and awareness campaigns about organ donation decision making that focus on individual autonomy and overlook the need for incorporating the specific content and message delivery needs of Asian Americans. This study is the first to explore attitudes and knowledge about posthumous organ donation among US Asian American populations in at least a decade.

"I would have told you about being forgetful, but I forgot": the experience of cognitive changes and communicative participation after head and neck cancer.

Purpose: Survivors of head and neck cancer have reported difficulties with memory, attention, verbal fluency, and processing speed sometimes persisting years after treatment. Self-perceived cognitive function is an important predictor of communication outcomes in this population. This study explores the lived experience of cognitive changes in survivors of non-nasopharyngeal head and neck cancer and how these changes affect communication in their daily lives.Materials and methods: In the phenomenological tradition, five adult survivors of non-nasopharyngeal head and neck cancer participated in individual semi-structured interviews. The interviews were audio-recorded, transcribed, coded, and summarized into themes.Results: Two major themes emerged: (1) I would have told you about being forgetful, but I forgot; and (2) It's such a journey that much of it is uncharted. Participants described problems with memory, focus/attention, and task initiation along with slowed processing and language difficulties. These difficulties affected communication at work, socially, and at home. Participants expressed feeling unprepared for the possibility of cognitive changes, not knowing why they were happening or what to do about them.Conclusions: Results of this study have implications for counseling and treatment of individuals with head and neck cancer, as well as advocating for these patients to receive appropriate information and intervention.Implications for rehabilitationSurvivors of non-nasopharyngeal head and neck cancer described experiencing problems with memory and focus/attention along with slowed processing and language difficulties.Study participants generally felt both unprepared for the cognitive changes they experienced and, in many ways, unsupported by healthcare providers and others.Rehabilitation professionals should be aware that cognitive changes following medical treatment for head and neck cancer may affect a patient's ability to learn and follow complex treatment regimens.Rehabilitation professionals can advise and advocate for these patients to receive the appropriate referrals for assessment and treatment of their cognitive symptoms.

Relationship between perceived social support and patient-reported communication outcomes across communication disorders: a systematic review.

BACKGROUND: Beyond the severity of voice, speech and language impairments, one potential predictor of communication success across adult populations with communication disorders may be perceived social support: the expectation that others will provide support if needed. Despite the preponderance of intervention approaches that assume a positive relationship between perceived social support and patient-reported communication success, the evidence base for these relationships is limited. AIMS: The aim of this systematic review is to explore relationships between measures of perceived social support and patient-reported communication outcomes in adult populations with communication disorders. METHODS & PROCEDURES: The PRISMA guidelines were followed in the conduct and reporting of this review. Electronic databases including PubMed, PsychINFO and CINAHL were systematically searched up to 19 May 2017. Additional data were obtained for two studies. All the included studies were appraised using the Critical Appraisal Skills Program (CASP) tools. Given the heterogeneous nature of the studies, data synthesis was narrative for the quantitative studies. A meta-ethnographic approach was used to synthesize qualitative data. OUTCOMES & RESULTS: Eight quantitative and four qualitative studies met eligibility criteria. All quantitative studies met eight of eight quality criteria. For the qualitative studies, one study met nine of nine quality criteria; the remaining three studies met three, seven and eight quality criteria. Of the eight included quantitative studies, six independent data sets were used. Results revealed no significant relationships between perceived social support and communication outcomes in three studies (two aphasia with one data set, one Parkinson's disease), while perceived social support was a weak, but significant predictor in two studies (one multiple sclerosis, one head and neck cancer). Three additional studies (two aphasia with one data set; one Parkinson's disease) found that relationships were initially weak, but strengthened over time to become moderate. Results from qualitative studies (one head and neck cancer, two aphasia, one multiple sclerosis) revealed that perceived social support acted as a facilitator, and absent or misguided support acted as a barrier to communication outcomes. Skilful, responsive family members were able to facilitate better quality of communicative interactions, whereas lack of social support, or negative attitudes and behaviours of other people, were barriers. CONCLUSIONS & IMPLICATIONS: While perceived social support may affect communication outcomes in adults with communication disorders, current measures may not adequately capture these constructs. Results have implications for future research and interventions for speech and language therapists.

Role of Psychosocial Factors on Communicative Participation among Survivors of Head and Neck Cancer.

Objective The purpose of this study was to examine the unique contribution of psychosocial factors, including perceived social support, depression, and resilience to communicative participation, among adult survivors of head and neck cancer (HNC). Study Design Cross-sectional. Setting University-based laboratory and speech clinic. Subjects and Methods Adult survivors of HNC who were at least 2 years posttreatment for HNC completed patient-reported outcome measures, including those related to communicative participation and psychosocial function. Multiple linear regression analysis was conducted to predict communicative participation. Self-rated speech severity, cognitive function, laryngectomy status, and time since diagnosis were entered first as a block of variables (block 1), and psychosocial factors were entered second (block 2). Results Eighty-eight adults who were on average 12.2 years post-HNC diagnosis participated. The final regression model predicted 58.2% of the variance in communicative participation (full model R2 = 0.58, P < .001). Self-rated speech severity, cognitive function, laryngectomy status, and time since diagnosis together significantly predicted 46.1% of the variance in block 1. Perceived social support, depression, resilience, and interactions significantly and uniquely predicted 12.1% of the additional variance in block 2. Conclusion For clinicians, psychosocial factors such as perceived depression warrant consideration when counseling patients with HNC about communication outcomes and when designing future studies related to rehabilitation.

Variables Associated With Communicative Participation After Head and Neck Cancer.

Importance: For patients with head and neck cancer (HNC), communication difficulties often create substantial barriers in daily life, affecting a person's ability to return to work, establish or maintain relationships, or participate in everyday activities. Objective: To examine variables significantly associated with communication in everyday activities, or communicative participation, in adult survivors of HNC. Design, Setting, and Participants: In a cross-sectional study, from November 1, 2008, through March 18, 2011, participants completed questionnaires about specific experiences and symptoms associated with their health and communication. Seventeen variables were considered in association with communicative participation. Data were collected from adult survivors of HNC residing in a community. Participants completed questionnaires, in English, either online or using paper forms according to their preference. Participants were recruited through support groups, professional email lists, and professional contacts. Main Outcomes and Measures: Communicative participation and predictor variables were measured using a variety of validated patient-report scales and demographic information. Multiple linear regression analysis was conducted with variables entered using a backward stepwise regression procedure. Variables with significant regression coefficients were retained in the model and reported as change in R2. Results: One hundred ninety-seven adults (121 males and 76 females; mean age, 61.5 years) participated, all at least 6 months posttreatment of HNC with no additional medical conditions affecting speech. The final model contained 4 significant variables (R2 = 0.462): self-rated speech severity, cognitive function, laryngectomy status, and time since diagnosis. Better communicative participation was associated with less severe speech and cognitive problems; together, these 2 variables explained 42% of the variance in the model (self-rated speech severity, R2 = 0.227, and cognitive function, R2 = 0.193 [0.227 + 0.193 = 0.420 = 42%]). To a lesser extent, better communicative participation also was associated with not having undergone a total laryngectomy surgical procedure (R2 = 0.035) and longer time since diagnosis (R2 = 0.007); full model: R2 = 0.462, P < .001; regression coefficients [SE]: self-rated speech severity 0.551 [0.065], P < .001, R2 = 0.227; cognitive function 0.063 [0.011], P < .001, R2 = 0.193; laryngectomy status 0.285 [0.117], P = .02; and time since diagnosis 0.015 [0.006], P = .02. Conclusions and Relevance: These results suggest that communicative participation in adults with HNC is associated with self-rated speech severity, cognitive function, whether or not a person has undergone total laryngectomy, and time since diagnosis. Clinicians can use these results to inform their practice in pretreatment counseling, patient education, and rehabilitation for survivors of HNC.

The Effect of Noise on Relationships Between Speech Intelligibility and Self-Reported Communication Measures in Tracheoesophageal Speakers.

PURPOSE: The purpose of this study was to examine how sentence intelligibility relates to self-reported communication in tracheoesophageal speakers when speech intelligibility is measured in quiet and noise. METHOD: Twenty-four tracheoesophageal speakers who were at least 1 year postlaryngectomy provided audio recordings of 5 sentences from the Sentence Intelligibility Test. Speakers also completed self-reported measures of communication-the Voice Handicap Index-10 and the Communicative Participation Item Bank short form. Speech recordings were presented to 2 groups of inexperienced listeners who heard sentences in quiet or noise. Listeners transcribed the sentences to yield speech intelligibility scores. RESULTS: Very weak relationships were found between intelligibility in quiet and measures of voice handicap and communicative participation. Slightly stronger, but still weak and nonsignificant, relationships were observed between measures of intelligibility in noise and both self-reported measures. However, 12 speakers who were more than 65% intelligible in noise showed strong and statistically significant relationships with both self-reported measures (R2 = .76-.79). CONCLUSIONS: Speech intelligibility in quiet is a weak predictor of self-reported communication measures in tracheoesophageal speakers. Speech intelligibility in noise may be a better metric of self-reported communicative function for speakers who demonstrate higher speech intelligibility in noise.