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1.
PLoS One ; 19(5): e0299428, 2024.
Article in English | MEDLINE | ID: mdl-38723042

ABSTRACT

BACKGROUND: Due to their dual sensory impairment, people with congenital deafblindness (CDB) are rarely naturally involved in other people's conversations. Their communication partners find it challenging to include them in group conversations. However, overhearing others communicate is important for developing social and communication skills. Hence, we developed an intervention program to guide communication partners in offering multiparty communication to people with CDB. This article describes how the program was developed through an intervention mapping approach. METHOD: Intervention mapping is a six-step process: logic model, model of change, program design, program production, program implementation plan, and evaluation plan. These six steps were applied to systematically develop a program to foster multiparty communication in people with CDB. Representatives of the involved groups participated in the project group and the working group to ensure feasibility and acceptability. RESULTS: Following the intervention mapping steps resulted in creation of a program for communication partners that consists of an education session, practicals, and four video-feedback sessions. Information sessions for practitioners and managers were also developed. The program was implemented incrementally with program implementers in each organization. A subjective evaluation and an impact evaluation were done after each implementation phase. DISCUSSION: Intervention mapping was used to develop a program that connects theory to practice. The program appeared to meet the communication partners' needs and be feasible in terms of time investment. This article offers suggestions for broadening the scope of the program to other settings and for further investigating the effects of the program on the social and communication skills of people with CDB.


Subject(s)
Communication , Deaf-Blind Disorders , Humans , Deaf-Blind Disorders/psychology , Female , Male
3.
Am J Obstet Gynecol ; 223(1): 119.e1-119.e10, 2020 07.
Article in English | MEDLINE | ID: mdl-31978433

ABSTRACT

BACKGROUND: Infants with severe hemolytic disease of the fetus and newborn often require 1 or multiple intrauterine transfusions to treat fetal anemia. Intrauterine transfusions may have an inhibiting effect on fetal and neonatal erythropoiesis. OBJECTIVE: To quantify the effect of 1 or multiple intrauterine transfusions on the fetal erythropoiesis by assessing the fetal reticulocyte counts in a population with severe hemolytic disease of the fetus and newborn. STUDY DESIGN: This was an observational cohort study in infants admitted to the Leiden University Medical Center who received 1 or multiple intrauterine transfusions for hemolytic disease of the fetus and newborn caused by (Rh)D or Kell antibodies and were born between January 2005 and December 2018. RESULTS: A total of 235 patients were included, of whom 189 were patients with D-mediated hemolytic disease of the fetus and newborn and 46 with Kell-mediated hemolytic disease of the fetus and newborn. Absolute fetal reticulocyte count in D-mediated hemolytic disease of the fetus and newborn declined exponentially over the course of consecutive intrauterine transfusions, with a 62% decline after 1 intrauterine transfusion (95% confidence interval, 56-67). A similar exponential decline was observed in Kell-mediated hemolytic disease of the fetus and newborn, with 32% (95% confidence interval, 19-45) decline after 1 intrauterine transfusion. This decline was not associated with the varying gestational age at the time of the first intrauterine transfusion or the total number of intrauterine transfusions. The number of red blood cell transfusions for postnatal anemia was greater for infants with D and Kell-mediated hemolytic disease of the fetus and newborn with >2 intrauterine transfusions (median of 3 [interquartile range, 2-3] vs 2 [interquartile range, 1-3], P=.035, in D-mediated disease and median of 2 [interquartile range, 1-2] vs 1 [interquartile range, 1-1], P<.001, in Kell-mediated disease). Infants born after >2 intrauterine transfusions less often required exchange transfusion in D-mediated hemolytic disease of the fetus and newborn (19/89 [21%] vs 31/100 [31%], P=.039), compared with infants with 1-2 intrauterine transfusions. CONCLUSION: Treatment with intrauterine transfusions causes an exponential decrease in fetal reticulocyte counts in both D- and Kell-mediated hemolytic disease of the fetus and newborn. Suppression of the compensatory erythropoiesis leads to prolonged postnatal anemia and an increased requirement of red blood cell transfusions after birth.


Subject(s)
Anemia/therapy , Blood Transfusion, Intrauterine/adverse effects , Erythroblastosis, Fetal/therapy , Erythropoiesis/physiology , Fetal Diseases/therapy , Anemia/complications , Blood Transfusion, Intrauterine/statistics & numerical data , Cohort Studies , Erythroblastosis, Fetal/blood , Erythrocyte Transfusion/statistics & numerical data , Female , Fetal Diseases/blood , Humans , Infant, Newborn , Male , Reticulocyte Count
4.
J Commun Disord ; 80: 35-51, 2019.
Article in English | MEDLINE | ID: mdl-31075557

ABSTRACT

This exploratory study conducts a quantitative investigation on the communication development of students with congenital deafblindness (CDB). First, a layered communication model (LCM) is introduced, describing communicative behaviors based on three layers of intersubjective development for typically developing children (Bråten & Trevarthen, 2007). Subsequently, an analysis is made of how applicable the LCM is for children with CDB. Video recordings of four dyads of students with CDB with varying developmental ages and their teachers are coded using ten-second partial interval coding. The presence of LCM behaviors, the student and teacher contributions to communication, and the development over a half-year period are described and compared between dyads. The results reflected the developmental differences between dyads. At the primary layer, all behaviors occurred a comparable number of times between dyads, which confirms that this is a basic communication layer. Quantitative differences between dyads were encountered between and within the secondary and tertiary layers. Teacher contribution was higher for students with lower developmental ages compared to students with higher developmental ages. Also, teacher contribution was higher for the secondary and tertiary layer behaviors of the LCM compared to the primary layer behaviors. No increase was found in the behaviors over the half-year period. Results suggest that the LCM can be used to gain insight into the communication level of a dyad, hereby paving the way for intervention studies to improve communication development.


Subject(s)
Communication , Congenital Abnormalities , Deaf-Blind Disorders , School Teachers/statistics & numerical data , Students/statistics & numerical data , Adolescent , Child , Child Development , Child, Preschool , Female , Humans , Male
5.
Am Ann Deaf ; 162(1): 24-33, 2017.
Article in English | MEDLINE | ID: mdl-28502913

ABSTRACT

The High Quality Communication intervention aims to stimulate interpersonal communication between individuals with congenital deaf-blindness (CDB) and their social partners. Found effective in multiple-case experiments, the intervention is based on Trevarthen's theory of inter-subjective development (Bråten & Trevarthen, 2007), which describes children's innate and developing ability to share subjective states in interpersonal communication and social partners' mediating role in this development. One implication of this theory is that social partners can support the emergence of higher-complexity communication behaviors in individuals who are still developing these behaviors. To test this proposition, communication patterns between individuals with CDB and their parents, teachers, and professional caregivers were analyzed. Analysis of two-event sequences of communicative behaviors showed a highly significant correspondence between the behavior of the social partner and the subsequent behavior of the individual with CDB, confirming that social partners can scaffold higher-complexity communication within interpersonal communication.


Subject(s)
Cognitive Dysfunction , Communication , Deaf-Blind Disorders , Social Behavior , Adult , Behavior Observation Techniques , CHARGE Syndrome , Caregivers , Child , Female , Humans , Interpersonal Relations , Male , Parents , Premature Birth , Rubella Syndrome, Congenital , School Teachers , Severity of Illness Index , Sign Language
6.
J Appl Res Intellect Disabil ; 30(5): 872-884, 2017 Sep.
Article in English | MEDLINE | ID: mdl-27554599

ABSTRACT

BACKGROUND: Recent studies have shown that it is possible to foster affective involvement between people with congenital deafblindness and their communication partners. Affective involvement is crucial for well-being, and it is important to know whether it can also be fostered with people who have congenital deafblindness and intellectual disabilities. METHODS: This study used a multiple-baseline design to examine whether an intervention based on the Intervention Model for Affective Involvement would (i) increase affective involvement between four participants with congenital deafblindness and intellectual disabilities and their 13 communication partners and (ii) increase the participants' positive emotions and decrease their negative emotions. RESULTS: In all cases, dyadic affective involvement increased, the participants' very positive emotions also increased and the participants' negative emotions decreased. CONCLUSION: The results indicate that communication partners of persons with congenital deafblindness and intellectual disabilities can be successfully trained to foster affective involvement.


Subject(s)
Affect , Communication , Deaf-Blind Disorders/rehabilitation , Intellectual Disability/rehabilitation , Interpersonal Relations , Psychotherapy/methods , Adult , Female , Humans , Male , Middle Aged
7.
Am Ann Deaf ; 161(3): 314-26, 2016.
Article in English | MEDLINE | ID: mdl-27477039

ABSTRACT

Because little is known about teacher-student relationships that involve students with acquired deafblindness, the authors performed a multiple case study with a multiple-method design to investigate the relationship between need-supportive teaching behaviors and student engagement. Using self-determination theory (Deci & Ryan, 2000), they analyzed video observations of interactions. It was found that teachers' provision of structure, autonomy support, and involvement often cooccurs with higher levels of student engagement. Moreover, varying degrees of need support over time seem to result in varying levels of student engagement. Examples are provided of need-supportive teaching behaviors that can be used to foster the motivation of students with acquired deafblindness.


Subject(s)
Duane Retraction Syndrome/psychology , Education of Hearing Disabled/methods , Education of Visually Disabled/methods , Interpersonal Relations , Motivation , Persons With Hearing Impairments/psychology , Refsum Disease/psychology , School Teachers/psychology , Usher Syndromes/psychology , Visually Impaired Persons/psychology , Adolescent , Adolescent Behavior , Duane Retraction Syndrome/diagnosis , Female , Humans , Personal Autonomy , Refsum Disease/diagnosis , Teaching , Usher Syndromes/diagnosis , Video Recording
9.
Expert Rev Hematol ; 8(1): 123-9, 2015 Feb.
Article in English | MEDLINE | ID: mdl-25547250

ABSTRACT

BACKGROUND: Polycythemia occurs in 1 to 5% of neonates and is associated with complications, including an increased risk of thrombocytopenia. OBJECTIVE: To evaluate incidence, risk factors, management and outcome of thrombocytopenia in neonates with polycythemia. STUDY DESIGN: All neonates with polycythemia admitted to our neonatal intensive care unit between 2006 and 2013 were included in this retrospective study. We evaluated the incidence of thrombocytopenia (platelet count <150 × 10(9)/l) and severe thrombocytopenia (platelet count <50 × 10(9)/l) and the correlation between platelet counts and hematocrit values. RESULTS: The incidence of thrombocytopenia and severe thrombocytopenia was 51 (71/140) and 9% (13/140), respectively. Platelet count was negatively correlated with hematocrit (spearman correlation coefficient -0.233, p = 0.007). After multiple regression analysis, we found an independent association between thrombocytopenia and being small for gestational age (OR: 10.0; 95%; CI: 1.2-81.7; p = 0.031). CONCLUSION: Thrombocytopenia occurs in 51% of neonates with polycythemia and is independently associated with growth restriction. Increased hematocrit is associated with decreased platelet count.


Subject(s)
Polycythemia/epidemiology , Thrombocytopenia/epidemiology , Female , Humans , Incidence , Infant, Newborn , Male , Netherlands/epidemiology , Polycythemia/blood , Retrospective Studies , Risk Factors , Thrombocytopenia/blood , Thrombocytopenia/drug therapy , Treatment Outcome
10.
J Deaf Stud Deaf Educ ; 19(3): 366-84, 2014 Jul.
Article in English | MEDLINE | ID: mdl-24688067

ABSTRACT

Sensory disabilities may limit a person's development of intersubjectivity, that is, the awareness of self and other, which develops in conjunction with interpersonal communication. This study used intersubjectivity theory to test a new intervention called the High-Quality Communication (HQC) intervention for its effects on a young adult with congenital deafblindness and a developmental age of between 1.5 and 4 years. Three of his social partners were trained to support attunement and meaning making with him through education and video feedback. This study measured seven observation categories at three layers of intersubjective development during a baseline and two intervention phases: dyadic interaction, shared emotion, referential communication, meaning negotiation, shared meaning, declarative communication, and shared past experience. The participant's use of conventional communication was included as an additional category. Effects were observed in all observation categories from the baseline to the intervention phases. Further study of the effectiveness of the HQC intervention is recommended to test whether effects generalize across people and settings.


Subject(s)
Caregivers/education , Communication , Deaf-Blind Disorders/rehabilitation , Interpersonal Relations , Deaf-Blind Disorders/complications , Feasibility Studies , Goldenhar Syndrome/complications , Humans , Male , Treatment Outcome , Young Adult
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