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1.
Patient Educ Couns ; 97(2): 248-55, 2014 Nov.
Article in English | MEDLINE | ID: mdl-25224315

ABSTRACT

OBJECTIVE: Problems with clinician-patient communication negatively impact newborn screening, genetics, and all of healthcare. Training programs teach communication, but educational methods are not feasible for entire populations of clinicians. To address this healthcare quality gap, we developed a Communication Quality Assurance intervention. METHODS: Child health providers volunteered for a randomized controlled trial of assessment and a report card. Participants provided telephone counseling to a standardized parent regarding a newborn screening result showing heterozygous status for cystic fibrosis or sickle cell disease. Our rapid-throughput timeline allows individualized feedback within a week. Two encounters were recorded (baseline and after a random sample received the report card) and abstracted for four groups of communication quality indicators. RESULTS: 92 participants finished both counseling encounters within our rapid-throughput time limits. Participants randomized to receive the report card improved communication behaviors more than controls, including request for teach-back (p<0.01), opening behaviors (p=0.01), anticipate/validate emotion (p<0.001) and the ratio of explained to unexplained jargon words (p<0.03). CONCLUSION: The rapid-throughput report card is effective at improving specific communication behaviors. PRACTICE IMPLICATIONS: Communication can be taught, but this project shows how healthcare organizations can assure communication quality everywhere. Further implementation could improve newborn screening, genetics, and healthcare in general.


Subject(s)
Anemia, Sickle Cell/diagnosis , Communication , Counseling , Cystic Fibrosis/diagnosis , Neonatal Screening/methods , Professional-Family Relations , Quality Improvement , Adult , Anemia, Sickle Cell/genetics , Child , Cystic Fibrosis/genetics , Female , Genetic Testing , Humans , Infant, Newborn , Male , Middle Aged , Parents/psychology , Quality Indicators, Health Care , Time Factors
2.
Patient Educ Couns ; 90(3): 378-85, 2013 Mar.
Article in English | MEDLINE | ID: mdl-22240007

ABSTRACT

OBJECTIVE: Newborn screening (NBS) identifies genetic carriers for sickle cell hemoglobinopathy and cystic fibrosis. We aimed to identify factors during initial NBS carrier results disclosure by primary care providers (PCPs) that influenced parents' experiences and reactions. METHODS: Open-ended responses from telephone interviews with 270 parents of carriers were analyzed using mixed-methods. Conventional content analysis identified influential factors; chi-square tests analyzed relationships between factors and parent-reported reactions. RESULTS: Parents reported positive (35%) or negative (31%) reactions to results disclosure. Parents' experiences were influenced by specific factors: content messages (72%), PCP traits (47%), and aspects of the setting (30%). Including at least one of five specific content messages was associated (p<0.05) with positive parental reactions; omitting at least one of four specific content messages was associated (p<0.05) with negative parental reactions. Parents reported positive reactions when PCPs avoided jargon or were perceived as calm. Parents reported negative reactions to jargon usage and results disclosure by voicemail. CONCLUSION: Parents identified aspects of PCP communication which influenced their reactions and results disclosure experiences. PRACTICE IMPLICATIONS: Our findings suggest ways PCPs may improve communication of carrier results. PCPs should provide specific content messages and consider how their actions, characteristics, and setting can influence parental reactions.


Subject(s)
Carrier State/psychology , Cystic Fibrosis/genetics , Cystic Fibrosis/psychology , Hemoglobin SC Disease/genetics , Hemoglobin SC Disease/psychology , Parents/psychology , Adult , Disclosure , Female , Genetic Counseling , Genetic Testing , Health Knowledge, Attitudes, Practice , Humans , Infant, Newborn , Interviews as Topic , Male , Qualitative Research
3.
Patient Educ Couns ; 88(2): 203-8, 2012 Aug.
Article in English | MEDLINE | ID: mdl-22658247

ABSTRACT

OBJECTIVE: To examine the use of social support behaviors by primary care providers during delivery of positive newborn screening results for Sickle Cell Anemia carrier status. METHODS: Transcripts from 125 primary care providers who conveyed Sickle Cell Anemia carrier status to standardized parents were content analyzed using categories derived from Cutrona and Suhr's social support taxonomy. Frequencies and cross-tabulation matrices were calculated to study providers' social support utilization. RESULTS: Results showed most primary care providers (80%) incorporate social support behaviors into delivery of Sickle Cell Anemia carrier results and most frequently employed social network (61.6%) and informational support (38.4%) behaviors. Providers used tangible aid (8%), esteem (1.6%), and emotional support (9.6%) behaviors less frequently. CONCLUSION: Cutrona and Suhr's taxonomy may be a useful tool for assessing supportive communication during the delivery of Sickle Cell Anemia carrier status and could be incorporated into population scale assessments of communication quality assurance. PRACTICE IMPLICATIONS: Primary care providers may need training in how to adapt supportive behaviors to parents' needs during communication of Sickle Cell Anemia carrier status. They also may benefit from specific training about how to use esteem and emotional support.


Subject(s)
Anemia, Sickle Cell/genetics , Communication , Physician-Patient Relations , Social Support , Adult , Anemia, Sickle Cell/diagnosis , Female , Genetic Testing , Humans , Infant, Newborn , Male , Neonatal Screening/methods , Parents/psychology , Patient Simulation , Primary Health Care , Wisconsin
4.
Genet Med ; 14(2): 207-14, 2012 Feb.
Article in English | MEDLINE | ID: mdl-22261754

ABSTRACT

PURPOSE: The purpose of this qualitative analysis was to assess parental acceptability of large-scale, telephone follow-up regarding their infants' newborn screening (NBS) results, indicating carrier status for sickle cell hemoglobinopathy (SCH) and cystic fibrosis (CF). METHODS: Analysis of 195 interview transcripts focused on parents' responses to two open-ended questions: "What was your reaction to being called by me?" and "What do you think of the state NBS program having follow-up people calling parents like you?" Responses were coded using conventional content analysis procedures, and nonparametric tests were performed to analyze quantitative data. RESULTS: Most parents reported favorable opinions about the follow-up. Favorable opinions were associated with several emotional reactions to receiving follow-up (P <0.001) and three reasons why parents found the interview beneficial (P < 0.05): it provided information, clarified NBS results, and answered questions. Seventeen parents of SCH carriers reportedly had not been told their infant's NBS results and received them for the first time during the follow-up interview. CONCLUSION: Parents of CF and SCH carrier infants had favorable opinions and identified specific benefits to receiving follow-up contact. This analysis demonstrates an information deficit among carrier parents and illustrates the importance of NBS follow-up and need for comprehensive communication and counseling.


Subject(s)
Cystic Fibrosis/diagnosis , Hemoglobin SC Disease/diagnosis , Interviews as Topic , Neonatal Screening , Parents/psychology , Follow-Up Studies , Genetic Counseling , Health Knowledge, Attitudes, Practice , Humans , Infant, Newborn , Surveys and Questionnaires
5.
Commun Med ; 9(2): 101-11, 2012.
Article in English | MEDLINE | ID: mdl-24498695

ABSTRACT

Well-organized conversation can improve people's ability to comprehend and retain information. As part of a long-term effort to adapt Quality Improvement techniques for communication, we developed an explicit-criteria method to assess usage of three organizing behaviors (OBs): 'opening behaviors' to establish goals; 'structuring behaviors' to guide patients through conversation; and 'emphasizing behaviors' that signal a need for attention. Pairs of abstractors independently reviewed transcripts in a demonstration sample of conversations between physicians and standardized parents after newborn screening identifies carrier status for sickle cell disease. Criteria for at least one OB were identified in 50/84 transcripts (60%), including 27 with at least one opening behavior (32%), 5 with at least one structuring behavior (6%), and 38 with at least one emphasizing behavior (45%). The limited number of OBs raises concern about communication after newborn screening. Assessment and improvement of OB usage may improve understanding and allow parents to more actively participate in health care.


Subject(s)
Behavior , Counseling/methods , Genetic Testing , Neonatal Screening/psychology , Parents/psychology , Physicians/psychology , Aged , Anemia, Sickle Cell/genetics , Communication , Female , Humans , Infant, Newborn , Male , Middle Aged , Patient Simulation , Physician-Patient Relations
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