Caregiver Talk Research Articles

Achieving Inter-Rater Agreement and Inter-Rater Reliability to Assess Fidelity of an Occupation-Based Coaching (OBC) Clinical Trial Intervention

Introduction: Establishing inter-rater agreement and reliability ascertains that multiple raters consistently evaluate observed interventions to ensure that clinical research protocols are delivered as intended by the trial protocol. Purpose: Using the Guidelines for Reporting Reliability and Agreement Studies, we (a) exemplified the steps to establish inter-rater reliability and inter-rater agreement on the occupation-based coaching Video Evaluation Tool and (b) evaluated best practices that promoted high inter-rater reliability and inter-rater agreement between blinded raters prior to starting a pilot randomized controlled trial. The randomized controlled trial examined the preliminary effectiveness of occupation-based coaching via telehealth for rural families with children living with type 1 diabetes to improve family quality of life, participation, self-efficacy, and child health outcomes. Method: We created a library of 13 occupation-based coaching videos portraying a range of evaluations, scores, and ratings. The inter-rater agreement and reliability on the occupation-based coaching Video Evaluation Tool were established through the iterations of (a) blinded rater training, (b) data collection using the tool, and (c) statistical analysis using Cohen’s kappa and Cronbach’s alpha. Findings: Occurrence and Non-Occurrence Checklist (κ = 0.881, p < 0.001); “Caregiver Talk” and “Interventionist Talk Analysis” (ICC = 0.991–0.999, p < 0.001); Evidence of Independent Capacity Rating (ICC = 0.867 p = 0.006). Conclusion: Strong inter-rater reliability and inter-rater agreement was established by engaging two blinded raters through multifaceted training, integrating real-life clients and contexts into the instrumentation and training, and precisely defined rubric criteria. By employing such practices, high inter-rater reliability and agreement can be achieved in clinical research involving interventions and instruments that are highly subjective and individualized. To ascertain greater scientific confidence in the intervention effect, developing a multidomain fidelity framework and establishing high inter-rater agreement and reliability in the instruments a priori to implementation of clinical trials are necessary.

The complexity of opportunities to respond used by mothers and fathers of children with Down syndrome: A preliminary investigation.

Caregiver-child interactions are commonly used to examine children's language learning environment. However, few studies consider interaction configurations beyond dyadic interactions or explore the conceptual complexity of caregiver talk. Thus, we examined if the complexity of a caregiver's opportunities to respond (OTR) varied when sampled across three interaction configurations. Our study included twelve preschool-aged children with Down syndrome and both of their biological parents. Our preliminary findings suggest no differences in mothers' and fathers' frequency of OTRs across complexity levels during dyadic interactions. However, caregivers produced fewer OTRs across complexity levels during family choice than dyadic interactions.

Conceptual Hierarchy in Child-Directed Speech: Implicit Cues are More Reliable

ABSTRACT In order for children to understand and reason about the world in an adult-like fashion, they need to learn that conceptual categories are organized in a hierarchical fashion (e.g., a dog is also an animal). While children learn from their first-hand observation of the world, social knowledge transmission via language can also play an important role in this learning. Previous studies have documented several cues in parental talk that can help children learn about conceptual hierarchy. However, these studies have used different datasets and methods that have made it difficult to compare the relative usefulness of various linguistic cues to conceptual knowledge and to test whether they scale up to naturalistic speech. Here, we study a large-scale corpus of English child-directed speech – collected in North America and the UK – and used a unified classification-based evaluation method which allowed us to investigate and compare cues that vary in terms of how explicit the information they offer is. We found the more explicit cues to be too sparse or too noisy in child-directed speech, making them unlikely to support robust learning. In contrast, the implicit cues offered a more reliable source of information. Further, we investigated developmental changes from 3 to 6 years of age, and we found no differences in the availability of these cues in the input. Our work confirms the utility of caregiver talk for conveying conceptual information and supporting the development of early taxonomic knowledge. It provides a first step toward a cognitive model that would combine perceptual- and language-based mechanisms, leading to a more comprehensive account of children’s conceptual development.

Gender differences in caregiver's use of spoken language with young children who are hard-of-hearing

PurposeShared parenting among caregivers of different gender is common in the Swedish society. It is unclear if this includes shared contribution for children’s language development. The objective of this cross-sectional study was to explore the natural language environment of children who were hard-of-hearing compared to typically hearing controls. MethodsSeventy-two families with children aged 7-35 months participated; 22 children who were hard-of-hearing (Cochlear implants, n=11; Hearing aids, n=11) and 50 controls with typical hearing. The majority of caregivers had higher education background level, especially in the control group. Families conducted a daylong recording with the Language Environment Analysis technology, when both parents were present at home. An Interpreted Time Segmental analysis was performed to extract information about female versus male caregivers quantitative word use. ResultsThe results showed significant gender differences related to number of adult words, with less male words than female words (p <0.001). Male caregivers of children who were hard-of-hearing contributed with around 27 % of adult words during the recordings while males in the control group contributed with 37 %. There was a larger variation in number of female words in the study group than for controls, especially in mothers of children with cochlear implants. Conclusions: Female caregivers talk significantly more close to young children than male caregivers, and especially in the subgroup of children with cochlear implants. Children who are hard-of-hearing are dependent on a rich language environment, and might be especially vulnerable if male caregivers are less involved as language facilitators. More studies are needed to explore caregiver gender differences, both related to quantitative and qualitative language stimulation.

Motivating deprescribing conversations for patients with Alzheimer's disease and related dementias: a descriptive study.

Introduction:Older adults with Alzheimer’s disease and related dementias (ADRD) are at increased risk of harm due to prescribing of potentially inappropriate medications. Encouraging patients and caregivers to talk with their providers about potentially inappropriate medications could stimulate deprescribing. Our objective was to explore whether mailing educational materials to patients with ADRD might activate patients or caregivers to initiate a conversation with their provider about potentially inappropriate medications.Methods:We conducted semi-structured interviews with patients with ADRD, caregivers of patients with ADRD, and healthcare providers. All participants were shown educational materials referencing potentially inappropriate medications and suggestions to promote deprescribing. Interviews explored reactions to the materials, the idea of patients and caregivers initiating a conversation about deprescribing, and the deprescribing process. Interview transcripts were analyzed using inductive thematic analysis.Results:We conducted a total of 27 interviews: 9 with caregivers only, 2 with patients only, 3 with patient–caregiver dyads, and 13 with providers. Patients and caregivers reported that if a medication might cause harm, it would motivate them to talk to their provider about the medication. Trust in the provider could facilitate or inhibit such conversations; conversations would be more likely if there were prior positive experiences asking questions of the provider. Providers were receptive to patients and caregivers initiating conversations about their medications, as they valued deprescribing as part of their clinical practice and welcome informed patients and caregivers as participants in decision-making about medication.Conclusion:Mailing educational materials about potentially inappropriate medications to community-dwelling patients with ADRD may promote deprescribing conversations. Ongoing pragmatic trials will determine whether such interventions stimulate deprescribing conversations and achieve reductions in prescribing of inappropriate medications.Plain Language Summary Encouraging patients with Alzheimer’s disease to talk with their providers about medications that may cause harm Introduction: Older adults with Alzheimer’s disease and related dementias (ADRD) are sometimes prescribed medications that may cause harm, especially when taken for extended periods of time. Patients and their caregivers may not know about the risks. Doctors know of the risks but may not address them due to competing priorities or other challenges in providing care to these patients with complex needs. Encouraging the patient or their caregiver to talk to their doctor about their medications might help to reduce the use of medications that are not beneficial. This study’s goal was to explore whether sending educational materials to patients with ADRD might encourage patients or caregivers to ask their doctor about their medications.Methods: We interviewed patients with ADRD, caregivers, and doctors. We showed them educational materials that suggested patients and their caregivers talk to their doctor about reducing or stopping medications that may be harmful. We asked for reactions to the materials and to the idea of talking to the doctor about stopping the medication.Results: We conducted 27 interviews: 9 with caregivers only, 2 with patients only, 3 with patient–caregiver dyads, and 12 with doctors. Patients and caregivers said learning that a medication might cause harm would motivate them to talk to their doctor about the medication. Trust in their doctor was important. Some patients and caregivers were comfortable asking questions about medications, while others were reluctant to challenge the doctor. Doctors were open to patients and caregivers asking about medications and felt it was important that patients not take medications that are not needed.Conclusion: Sending educational materials to patients with ADRD and caregivers may encourage them to talk with their doctors about stopping or reducing medications. Studies are needed to learn whether such materials lead to reductions in prescribing of potential harmful medications.

Sequence organization of autistic children's play with caregivers: Rethinking follow-in directives.

In this article we use a qualitative method, conversation analysis, to examine videos of caregivers interacting with their young autistic children who are in the early phases of language learning. Conversation analysis involves preparation of detailed transcripts of video data, which are then analyzed together to understand how interactional moves (e.g. talk, gestures, and physical conduct) are linked with prior and subsequent interactional moves. We analyzed data from 15 participants, and focused on instances when caregivers made a proposal about something the child was playing with. In previous research, similar instances have been referred to as "follow-in directives." We found that these proposals were embedded in sequences that had a similar structure, and were prefaced with a 'pre-proposal'; where the caregiver established the child's interest in a joint activity and signaled the upcoming proposal. The caregiver's talk was also provided in such a way that there was a clear "slot" for the child's turn, which made it easy for the child's actions to become part of an interactional sequence. In addition, proposal sequences were very negotiable-the caregivers do not usually insist that the child follow through on the proposal, only that they produce an action that could be taken as a response. Finally, there were some instances where the child's turn was very precisely timed to occur right at the end of a caregiver's proposal; this precise timing could signal the child's understanding of how interactional turn-taking works. We suggest that this method of examining caregiver-child interactions provides new insights into how interactions proceed, which could be useful for future intervention research.

Family involvement and patient-experienced improvement and satisfaction with care: a nationwide cross-sectional study in Danish psychiatric hospitals

BackgroundRandomised controlled trials suggest that family therapy has a positive effect on the course of depression, schizophrenia and anorexia nervosa. However, it is largely unknown whether a positive link also exists between caregiver involvement and patient outcome in everyday psychiatric hospital care, using information reported directly from patients, i.e. patient-reported experience measures (PREM), and their caregivers. The objective of this study is to examine whether caregiver-reported involvement is associated with PREM regarding patient improvement and overall satisfaction with care.MethodsUsing data from the National Survey of Psychiatric Patient Experiences 2018, we conducted a nationwide cross-sectional study in Danish psychiatric hospitals including patients and their caregivers who had been in contact with the hospital (n = 940 patients, n = 1008 caregivers). A unique patient identifier on the two distinct questionnaires for the patient and their caregiver enabled unambiguous linkage of data. In relation to PREM, five aspects of caregiver involvement were analysed using logistic regression with adjustment for patient age, sex and diagnosis.ResultsWe consistently find that high caregiver-reported involvement is statistically significantly associated with high patient-reported improvement and overall satisfaction with care with odds ratios (OR) ranging from 1.69 (95% confidence interval (CI) 0.95–2.99) to 4.09 (95% CI 2.48–6.76). This applies to the following aspects of caregiver-reported involvement: support for the patient-caregiver relationship, caregiver information, consideration for caregiver experiences and the involvement of caregivers in decision making. No statistically significant association is observed regarding whether caregivers talk to the staff about their expectations for the hospital contact.ConclusionThis nationwide study implies that caregiver involvement focusing on the patient-caregiver relationship is positively associated with patient improvement and overall satisfaction with care in everyday psychiatric hospital care.

A Systematic Literature Review of Autism Research on Caregiver Talk

Describing how caregivers' talk to their autistic children, and how their talk may influence social and language outcomes, has important implications for developmental theory and intervention research. In this systematic literature review, we examine 294 caregiver talk variables extracted from 65 studies, provide a narrative overview of research findings, and link measurement approaches to various theories of language development. The majority of variables included only talk directed to children (90%), and specified the speech act being performed (57%). More than one-third of variables measured talk that was responsive to children's attention, activities, or communication (38%), and slightly less than a third measured variables that elicited children's communication or engagement. Semantic aspects of talk were specified in 41% of variables, structural features were measured in 20% of variables, and suprasegmental features were measured in only 1% of variables. Talk quantity (without reference to other aspects of talk) was measured in 8% of variables. We found strong support that talk related to children's attention is implicated in autistic children's language development, but this construct has been measured inconsistently in terms of semantic, structural, and functional features. There is also evidence for bi-directional relationships between caregiver's talk and autistic children's development on a variety of semantic and structural variables. LAY SUMMARY: In our review, we found many differences in how researchers measured caregiver's talk, but also some promising leads. Researchers should continue examining caregiver talk related to children's focus of attention to clarify how this type of language contributes to autistic children's development. We also found interesting research on how children influence caregiver's talk, and encourage researchers to continue to study how this occurs.

Home Use of Remote Microphone Systems by Children with Hearing Loss

Home Use of Remote Microphone Systems by Children with Hearing Loss

Female caregivers talk more to 18-56-months-old children with and without hearing impairment than male caregivers measured with LENA™ – A cross-sectional pilot study

The objective of the current study was to investigate possible differences in word count use per day (number of adult words) by caregivers of different gender, in a sample of Norwegian children (N = 17) with hearing impairment (HI) (n = 8) and normal hearing (NH) (n = 9), aged 18–56 months. The current study had a cross-sectional, descriptive study design. One all-day recording with the LENA technology was conducted to measure adult word use in the home environment (Md length: 12.46 h, 9.13–16 h). Female caregivers used a significantly higher amount of words than male caregivers close to the children, regardless of their hearing status, HI: p = .01, NH: p = .01. All children were exposed to a higher number of adult words from female caregivers. There is a need to conduct more and further research about possible caregiver differences, and investigate not only the quantity of word use, but also the qualitative interaction patterns between caregivers of different gender and young children with HI, and in relation to early intervention actions.

Talk Around Town: A Mobile Phone Application to Support Parent–Child Talk in the Community

Supports are largely absent and tools are scarce to assist parents receiving home-based early intervention services (e.g., Early Head Start) with enriching the language learning environments of young children beyond home to the community. Talk Around Town is a wayfinding mobile application designed to provide real-time, location-specific, evidence-based communication strategies to parents in community settings (e.g., park, community center, store, library). The application uses Global Positioning System (GPS) functionality within smartphones and Google Maps to support caregiver talk in community locations. The purpose of this pilot study is to examine early childhood service providers’ and parents’ perceptions of Talk Around Town. Overall, parents and early childhood service providers’ perspectives were largely positive. Implications for future research are discussed (e.g., tailoring the application for Department of Human Services caseworkers).

Exploring the usefulness of indicators for referring people with dementia and their informal caregivers to activating interventions: a qualitative analysis of needs assessments

BackgroundPeople with dementia (PWDs) and their informal caregivers frequently report difficulties in maintaining their usual activities. We had previously developed a set of indicators to estimate whether dyadic, activating interventions can meet these needs for activity. This study investigates how PWDs and informal caregivers talk about the indicators in interviews for needs assessments, and how professionals identify activity needs and preferences. Our research goal was to explore the usefulness of the indicators for assessing the activity needs of community-dwelling dyads. Such assessments are needed for appropriate referral to activating interventions.MethodsA dementia case manager assessed the needs of community-dwelling PWDs and their informal caregivers; we carried out secondary analyses on the dataset resulting from the audio-tapes and transcripts. We applied qualitative, deductive content analysis because we wanted to identify both explicit and implicit needs and preferences. We used the indicators that we had developed in previous research as codes.ResultsBoth PWDs and informal caregivers do explicitly mention needs, preferences, and characteristics related to the indicators in the needs assessments. Possible implicit needs and preferences were frequently identified in their stories.ConclusionsNeeds-driven care requires high-quality needs assessments. Both PWDs and their informal caregivers need encouragement to express their latent needs and preferences. In addition, latent needs and preferences have to be further explored in needs assessments to find out the real meaning. The outcomes of this study highlight the significance of structured needs assessments for mapping the activity needs of PWDs and their informal caregivers. Many PWDs and informal caregivers reported activity needs, which suggests that activating interventions may be appropriate. The indicators can help professionals identify activity needs so that they can discuss matching activating interventions with the dyad.

Measuring Communication Similarity Between Hospice Nurses and Cancer Caregivers Using Latent Semantic Analysis.

Optimal end-of-life care requires effective communication between hospice nurses, caregivers, and patients, yet defining and evaluating effective communication are challenging. Latent semantic analysis (LSA) measures the degree of communication similarity (talking about the same topic) without relying on specific word choices or matching of communication behaviors (question-answer), thus more comprehensively evaluating communication interactions. Guided by the Communication Accommodation Theory, we evaluated communication similarity, indicating theoretical convergence, between hospice nurses and caregivers of cancer patients, identifying nurse attributes and communication skills that were associated with greater communication similarity. A descriptive secondary analysis of self-reported nurse data and 31 audio-recorded cancer patient home hospice nursing visits across 2 states and 7 hospices. The average LSA score was 0.83 (possible range, 0-1). A nurse preference for greater patient-oriented visits, use of more Nurse Partnering statements, and less Conversation Dominance (ratio of total nurse to total caregiver talk) were associated with higher LSA scores. Effective communication is essential to optimal end-of-life care. Latent semantic analysis is a feasible and promising approach for assessing communication similarity during home hospice care. Hospice nurses are at the forefront of family caregiver communication, playing a vital role in empowering caregivers to assume required patient care tasks. Communication strategies such as the use of partnering statements that increase LSA scores can be taught to hospice nurses and other members of the hospice interdisciplinary team as a way to enrich communication skills and improve communication confidence and can be translated into other oncology nursing contexts.

Reliability of the Language Environment Analysis Recording System in Analyzing French-English Bilingual Speech.

Purpose This study examined the utility of the Language ENvironment Analysis (LENA) recording system for investigating the language input to bilingual infants. Method Twenty-one French-English bilingual families with a 10-month-old infant participated in this study. Using the LENA recording system, each family contributed 3 full days of recordings within a 1-month period. A portion of these recordings (945 minutes) were manually transcribed, and the word counts from these transcriptions were compared against the LENA-generated adult word counts. Results Data analyses reveal that the LENA algorithms were reliable in counting words in both Canadian English and Canadian French, even when both languages are present in the same recording. While the LENA system tended to underestimate the amount of speech in the recordings, there was a strong correlation between the LENA-generated and human-transcribed adult word counts for each language. Importantly, this relationship holds when accounting for different-gendered and different-accented speech. Conclusions The LENA recording system is a reliable tool for estimating word counts, even for bilingual input. Special considerations and limitations for using the LENA recording system in a bilingual population are discussed. These results open up possibilities for investigating caregiver talk to bilingual infants in more detail.

Narratives About Autism: An Analysis of YouTube Videos by Individuals Who Self-Identify as Autistic.

Purpose The goal of this study was to expand the field's understanding of autism through the analysis of 1st-person perspectives from autistic video webloggers (vloggers). Method This study analyzed the representation of autism in 39 YouTube videos authored by self-identified autistic individuals and published between 2007 and 2015. Consistent with the cross-disciplinary tradition of narrative inquiry, thematic analyses of the video transcripts were conducted. Findings Vloggers were predominantly, but not exclusively, White male adults who spoke mainstream American English and self-identified as experiencing Asperger's syndrome. Key findings included (a) the predominance of a narrative about autism that incorporated features of both the medical model of disability and the neurodiversity paradigm to varying degrees, (b) a trend toward more medical model features across most content areas, and (c) a relatively high prevalence of neurodiversity paradigm features related specifically to language use and the description of autistic traits. Conclusions Implications include the need for clinicians to (a) familiarize themselves with the varying views of autism held within the autistic community, (b) reflect on the language used to talk about autism and listen to how clients and/or their caregivers talk about it, and (c) consider the exploration of potential positive dimensions of autistic traits.

Parent-provider paediatric literacy communication: Acurriculum for future primary care providers.

BackgroundReach Out and Read promotes early literacy and school readiness by incorporating book delivery and anticipatory guidance into well-child visits. There is a need to train future healthcare providers in the knowledge and skills to communicate with parents/caregivers about early childhood literacy. We developed and evaluated a curriculum to improve learners’ knowledge, attitudes, and skills towards the incorporation of parent-provider literacy communication into well-child visits.MethodsFamily medicine residents (n = 30), physician assistant students (n = 36), and medical students (n = 28) participated in a curriculum consisting of service learning, online didactic training, objective structured clinical exams (OSCEs) and a debriefing session. Standardized patients (SPs; 6 months to 5 years) and standardized patient caregivers were recruited and trained. Learners were evaluated on their abilities to offer books to patients, provide anticipatory guidance, and demonstrate parent-provider communication skills. Knowledge, attitudes, and satisfaction were collected pre- and post-curriculum.ResultsSignificant increases in total knowledge were observed after completing curriculum activities (p < 0.001). All attitudes improved after training (p < 0.05). All learners (100%) recommended that caregivers talk back and forth with their 6‑ to 12-month-old babies and make eye contact. Few (18.2%) learners recommended playing games like ‘peek-a-boo’ while reading. When caregivers evaluated learners’ basic parent-provider communication skills, all reported that the learners treated them with respect and used plain language.DiscussionOur curriculum extends beyond previous studies by measuring recommended books, anticipatory guidance, and communication skills using paediatric SPs and standardized patient caregivers. Curriculum activities can be tailored to best promote parent-provider literacy communication training in other programs.Electronic supplementary materialThe online version of this article (10.1007/s40037-019-0503-8) contains supplementary material, which is available to authorized users.

How Does Pubertal Development Impact Caregiver-Adolescent Communication About Sex in Rural, African American Families? An Examination of Mediation Effects

This study examined the relationship between pubertal development and type of caregiver-adolescent communication about sex (CACS) among 441 African American caregivers participating in an intervention trial in rural North Carolina. We assessed CACS about general sexual health topics and positive aspects of sexuality. Caregivers’ attitudes and self-efficacy for CACS, and open communication style were examined as potential mediators. Caregivers engaged in low levels of communication about sex regardless of type. Among caregivers of males, pubertal development was associated with greater communication about general sexual health, which was mediated by self-efficacy for CACS. Among caregivers of females, pubertal development was associated with less communication about general and positive sexual health topics; however, there were no mediating factors. These findings highlight the predictors of CACS among young men and women after pubertal onset. Age appropriate, practical guidance for initiating CACS may be critical for ensuring caregiver talk about sex.

Talk, Read, Sing: Early Language Exposure As an Overlooked Social Determinant of Health.

* Abbreviations: AAP — : American Academy of Pediatrics SES — : socioeconomic status I took note of my senior resident’s polished words and facial expressions as we stood in the newborn nursery. Anxious parents consumed every word of her discharge education. They laughed as she reassured them that spit-up is normal and solemnly absorbed all the ways they could minimize the risk of sudden infant death syndrome. “Everything make sense?” she asked me later in the work room. “As the third-year medical student, it will be your responsibility to do the discharge education on this rotation.” She carefully ran through the 10-point discharge list and neatly paired each education point with supporting evidence and significance. However, the final piece of advice, “Talk, read, and sing to your infant,” was not mentioned. I wondered if her omission came with an implicit prioritization. Not talking, reading, or singing to a newborn is, admittedly, less life-threatening than most recommendations on the newborn discharge list. But as I have since learned, the quantity and quality of parent–child interactions (how much and how often caregivers talk, read, and sing to their children) are key in shaping healthy brain development during the first few years of life.1–3 The first 1000 days of life are a critical time for brain development. Early experiences, transmitted via rich language … Address correspondence to Dana Suskind, MD, Department of Surgery, University of Chicago, 5841 S. Maryland Ave, MC1035, Chicago, IL 60637. E-mail: dsuskind{at}surgery.bsd.uchicago.edu

Remote microphone system use in the homes of children with hearing loss

Remote microphone systems (RMS) are known to improve speech recognition skills of children with hearing loss in settings where noise and distance are present (e.g., the classroom, the home; Bertachini, 2016). However, although RMSs are widely recommended in the classroom setting, very few and inconclusive studies have examined the possible language benefits related to the use of RMS use in the home environment. In this presentation, we will discuss a series of projects in which we investigated the effects of home-use of an RMS on the communication of 10 families with young children with hearing loss. Language Environmental Analysis (LENA™) recorders were used during two consecutive weekends (one weekend with the remote microphone and one without). Caregiver talk, child-directed speech, and other caregiver communication strategies were compared across both weekends. Caregiver perceptions related to RMS use will also be discussed.

Bidirectional influences of caregiver utterances and supported joint engagement in children with and without autism spectrum disorder.

Our findings suggest that caregivers of children with autism spectrum disorder (ASD) may be particularly adept at timing their talk to follow moments of high-level joint engagement, and that follow-in directives are particularly facilitative of high-level joint engagement. Future intervention work can capitalize on these findings to support high level caregiver-child engagement around toys, which may promote development in children with ASD.