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1.
Clin Linguist Phon ; : 1-18, 2024 Jul 04.
Artigo em Inglês | MEDLINE | ID: mdl-38965827

RESUMO

This study compared language samples from typically developing 4-year-olds who spoke African American English (AAE), Jamaican English (JE), or Mainstream American English (MAE) to assess the value of using language sample analysis (LSA) measures for characterising language use across dialects of English. Specific LSA metrics included mean length of utterance (MLU) in morphemes and in words, the Index of Productive Syntax (IPSyn), Developmental Sentence Scoring (DSS) and measures of lexical diversity. Children demonstrated diverse linguistic patterns across dialects, but a Kruskal-Wallis H test did not reveal significant differences in scores obtained through LSA measures. Notably, the IPSyn captured morphosyntactic structures in each category across dialects where prior research has highlighted limitations. This preliminary study uses a case-based approach to illustrate the applicability of LSAs in describing linguistic variations across children who speak different dialects of English. Moreover, the findings from this study underscore the potential use of LSAs in describing linguistic patterns to support the characterisation of communication profiles for culturally and linguistically diverse children.

2.
Am J Hosp Palliat Care ; : 10499091241263016, 2024 Jun 16.
Artigo em Inglês | MEDLINE | ID: mdl-38881044

RESUMO

BACKGROUND: Caregivers of cancer patients are at increased risk of depression and other health challenges. There is limited understanding of the role of the caregiver's own family members in promoting or discouraging mental wellbeing. Family functioning conceptualizes how family members interact to promote a positive family environment and has the potential to impact caregiver mental health. The purpose of this study is to assess the association between family interactions and depressive symptoms among family caregivers of cancer patients. METHODS: Secondary analysis of baseline data from an NIH-funded randomized control trial of family caregivers of cancer patients recruited from academic palliative care clinics at three sites (2 Midwest, 1 East). We tested for an association between caregiver responses to the Family Quality of Life in Dementia-Family Interactions Subscale and Patient-Reported Outcomes Measurement Information System Depression Short Form 8A using a block-wise approach to linear modeling. RESULTS: A total of 246 caregivers were included in analysis; caregivers were mostly White (82%), not Hispanic or Latina/o (96%), and female (65%), with an average age of 55 years. Overall, participants had high family interactions (mean 57.7, sd 11.7) and an average depressive symptom burden (t-score 52.4, SD 8.57). Family interactions was significantly negatively associated with depressive symptoms (b = -.163, se = .057) when accounting for relevant covariates. CONCLUSION: Family caregivers with more positive family interactions are likely to have fewer depressive symptoms, suggesting family functioning may play a key role in bolstering family caregiver mental health and wellbeing.

3.
Support Care Cancer ; 32(7): 404, 2024 Jun 04.
Artigo em Inglês | MEDLINE | ID: mdl-38833189

RESUMO

PURPOSE: Family caregivers of patients with cancer often experience both loneliness and symptoms of psychological distress, such as anxiety and depression. The purpose of this study was to evaluate the associations between loneliness and anxiety and loneliness and depression among family caregivers of patients with cancer and to investigate whether positive aspects of caregiving can have a moderating effect on these relationships. METHODS: We conducted a cross-sectional exploratory study using baseline data from an ongoing multisite clinical trial. Multiple linear regression models were used to analyze the relationships between loneliness and psychological distress symptoms and the moderating effect of positive aspects of caregiving. Psychological distress outcomes were measured using PROMIS Short Forms (8a) for Anxiety and Depression. RESULTS: We identified a significant association between loneliness and symptoms of both anxiety and depression. Positive aspects of caregiving did not significantly moderate the relationship between loneliness and depression or loneliness and anxiety. CONCLUSION: The results of this study shed new light on the relationship between loneliness and symptoms of psychological distress experienced by family caregivers of cancer patients, providing a better understanding of the impact that recognition of positive aspects of caregiving has on the association between loneliness and psychological distress symptoms. Our findings emphasize the importance of targeting family caregiver loneliness in order to reduce psychological distress among family caregivers of cancer patients.


Assuntos
Ansiedade , Cuidadores , Depressão , Solidão , Neoplasias , Angústia Psicológica , Humanos , Solidão/psicologia , Cuidadores/psicologia , Masculino , Feminino , Neoplasias/psicologia , Estudos Transversais , Pessoa de Meia-Idade , Depressão/etiologia , Ansiedade/etiologia , Idoso , Adulto , Estresse Psicológico/etiologia , Modelos Lineares
4.
JMIR Hum Factors ; 11: e51789, 2024 May 23.
Artigo em Inglês | MEDLINE | ID: mdl-38781581

RESUMO

BACKGROUND: Early users found Engagement and Visualization to Improve Symptoms in Oncology Care (ENVISION), a web-based application designed to improve home management of hospice patients' symptoms and support patients' and family caregivers' well-being, to be generally useful and easy to use. However, they also raised concerns about potential challenges users with limited technological proficiency might experience. OBJECTIVE: We sought to concurrently accomplish two interrelated study aims: (1) to develop a conceptual framework of digital inclusivity for health information systems and (2) to apply the framework in evaluating the digital inclusivity of the ENVISION application. METHODS: We engaged ENVISION users (N=34) in a qualitative study in which data were collected via direct observation, think-aloud techniques, and responses to open-ended queries. Data were analyzed via theory elaboration and basic qualitative description. RESULTS: Accessibility, relevance, and impact were identified as 3 essential considerations in evaluating a health system's digital inclusivity. Study findings generally supported ENVISION's digital inclusivity, particularly concerning its perceived relevance to the work of family caregivers and hospice clinicians and its potentially positive impact on symptom management and quality of life. Limitations to ENVISION's digital inclusivity centered around issues of accessibility, particularly operability among individuals with limited technological knowledge and skills. CONCLUSIONS: The Accessibility, Relevance, and Impact conceptual framework of digital inclusivity for health information systems can help identify opportunities to strengthen the digital inclusivity of tools, such as ENVISION, intended for use by a broad and diverse range of users.


Assuntos
Serviços de Assistência Domiciliar , Cuidados Paliativos na Terminalidade da Vida , Pesquisa Qualitativa , Humanos , Cuidados Paliativos na Terminalidade da Vida/métodos , Feminino , Masculino , Pessoa de Meia-Idade , Avaliação de Sintomas/métodos , Adulto , Cuidadores/psicologia , Qualidade de Vida
5.
Am J Speech Lang Pathol ; 33(4): 1698-1717, 2024 Jul 03.
Artigo em Inglês | MEDLINE | ID: mdl-38573244

RESUMO

PURPOSE: The purpose of this study was to characterize the communicative participation and functional speech intelligibility (i.e., how children use communication and how well they are understood across everyday life) of typically developing (TD) bilingual Jamaican preschoolers and those with functionally defined speech sound disorders (fSSDs) in the COVID-19 milieu. Findings were also compared to an existing corpus of baseline data to document and explore differences in children's speech-language outcomes secondary to pandemic-related social restrictions. METHOD: Thirty bilingual Jamaican preschoolers, 21 TD and nine with fSSDs, were assessed during the pandemic via telepractice. Association and univariate mean testing were completed to characterize children's communicative participation and functional speech intelligibility. Data were then compared to an existing corpus of baseline data (collected in person between 2013 and 2019), which included direct child assessment and parent reports and consisted of TD (n = 226) Jamaican Creole-English-speaking preschoolers and those with fSSDs (n = 39) to compare performance profiles across data sets. All participants attended schools in Kingston, Jamaica. RESULTS: Measures of communicative participation remained stable in the context of the COVID-19 milieu for children in the TD and fSSD groups, but functional speech intelligibility outcomes for children with fSSDs deviated between in-person findings collected from children pre-pandemic. Between-groups differences were also found on measures of speech production accuracy but were no longer significant when considering telepractice as a covariate. CONCLUSIONS: Findings from this investigation serve to characterize the communicative participation and functional speech intelligibility of TD bilingual Jamaican preschoolers and those with fSSDs in the COVID-19 milieu. By extension, the results comparing data from preschoolers collected during the pandemic to an existing corpus of baseline data from a different group of preschoolers provide critical insights about multilingual children's speech-language outcomes in the context of acutely changing environmental circumstances. SUPPLEMENTAL MATERIAL: https://doi.org/10.23641/asha.25461505.


Assuntos
COVID-19 , Multilinguismo , Inteligibilidade da Fala , Humanos , Pré-Escolar , Masculino , Feminino , Jamaica , Transtorno Fonológico/diagnóstico , Linguagem Infantil , SARS-CoV-2
6.
Am J Hosp Palliat Care ; : 10499091241248653, 2024 Apr 24.
Artigo em Inglês | MEDLINE | ID: mdl-38657132

RESUMO

Introduction/Aims: This national survey builds on previous qualitative research examining potential palliative care needs among people living with ALS (pALS) by quantifying and investigating relationships among pALS' stage of illness progression; physical, emotional, social, spiritual, and intimacy-related concerns; advance care planning behaviors; perceptions of feeling heard and understood by healthcare providers; and overall quality of life. Methods: Researchers partnered with national organizations to recruit pALS to participate in a one-time survey comprising items from validated instruments (eg, the ALS Specific Quality of Life Instrument-Revised) and researcher-generated measures. Data were analyzed using logistic and linear regression. Results: Among pALS (n = 112), many respondents indicated they had discussed their wishes for end-of-life care with family or friends, shared their wishes with providers, and documented their wishes in writing (79.5%, 49.1%, and 63.4%, respectively). Mean (M) quality of life scores were moderate (M ≈ 6 of 10). Illness stage was associated with documentation of end-of-life care wishes but not with having discussed these wishes with others or with overall quality of life. Reported emotional intimacy received was comparable to that desired (difference = .01 of 10); however, a greater desire for physical intimacy relative to that received was indicated (difference = 1.75 of 10). Discussion: Interdisciplinary palliative care teams may enhance ALS care by promoting advance care planning behaviors (particularly discussing one's wishes with healthcare providers), providing interventions to improve quality of life, and supporting pALS in navigating challenges related to physical intimacy.

7.
Int J Speech Lang Pathol ; : 1-16, 2024 Feb 20.
Artigo em Inglês | MEDLINE | ID: mdl-38375802

RESUMO

PURPOSE: The purpose of this study was to investigate the cross-linguistic influences of Jamaican Creole (JC) and English on phonemic and vocal development in bilingual JC-English-speaking preschoolers. METHOD: Sixteen typically developing children (12 females, M = 4 years; 4 months) completed the Diagnostic Evaluation of Articulation in Phonology Word Inconsistency Assessment subtest in JC and in English. Acoustic measures of voice onset time (VOT), VOT variability (VOT SD), mean fundamental frequency (fo), and fo variability (fo SD) were extracted from each target word. Prevoicing was noted. Mixed models and regression models were analysed to understand the patterns of acoustic measures in each language, and the relationship between phonemic and vocal variability, respectively. RESULT: Analyses showed a significant effect of language on fo SD, wherein SD was greater in English than JC. JC spoken (percentage) was a significant positive predictor of VOT SD for voiced (short lag) productions. There was no relationship between phonemic and vocal variability measures. CONCLUSION: Greater fo SD in English may be due to linguistic fo differences and speaking environment. Variability for voiced VOT is likely due to the continued maturation of vocal and articulatory control when children are developing adult-like productions, though longitudinal studies are needed.

8.
J Palliat Med ; 27(5): 614-621, 2024 May.
Artigo em Inglês | MEDLINE | ID: mdl-38271546

RESUMO

Background: The burden of caregiving for family members is significant and becomes particularly challenging at end of life, with negative effects on mental health, including anxiety and depression. Research has shown caregivers need better communication with their health care team. Objectives: To evaluate the relationship between hospice team communication with caregivers and caregiver involvement in care. Methods: The purpose of this secondary analysis of data collected from a U.S.-based cluster crossover randomized trial was to evaluate whether caregiver-centered communication (Caregiver-Centered Communication Questionnaire) is associated with a caregiver's perceptions of involvement in care (Perceived Involved in Care Scale). A block-wise approach was used to estimate linear models, which were created using total scores and subscale scores. Results: Caregiver-centered communication was positively associated with perceptions of involvement in care. Conclusion: Skilled communication between hospice clinicians and family caregivers is critical in helping family members perception they are involved in the care of their loved one. There could be similar benefit in caregiver-centered communication during cancer treatment as well.


Assuntos
Cuidadores , Comunicação , Cuidados Paliativos na Terminalidade da Vida , Humanos , Cuidadores/psicologia , Masculino , Feminino , Cuidados Paliativos na Terminalidade da Vida/psicologia , Pessoa de Meia-Idade , Idoso , Inquéritos e Questionários , Estudos Cross-Over , Estados Unidos , Família/psicologia , Adulto , Relações Profissional-Família , Idoso de 80 Anos ou mais
9.
Health Commun ; 39(3): 482-492, 2024 Mar.
Artigo em Inglês | MEDLINE | ID: mdl-36683376

RESUMO

Half of hospice family caregivers report having unmet information needs, which can contribute to poor pain and symptom management, emergency department use, and hospice disenrollment for care-recipients and to caregiver strain and stress. Effective communication between hospice teams and family caregivers is critical yet communication inadequacies persist. Despite the growing prevalence of distance caregiving, including in hospice care, and the relationship between caregiver proximity and communication effectiveness, little is known about how caregiver proximity is associated with caregiver perceptions of hospice communication. In this secondary analysis of quantitative data from two multisite randomized clinical trials (NCT03712410 and NCT02929108) for hospice family caregivers (N = 525), multivariate linear models with demographic and contextual controls were used to analyze caregivers' perceptions of caregiver-centered communication with hospice providers based on caregiver proximity to the hospice care-recipient. In multivariate models, "local" hospice family caregivers who lived within 1 hour of the hospice care-recipient reported less effective communication with the hospice team than co-residing caregivers; and older caregivers rated communication more favorably than younger caregivers. To improve communication and collaboration between hospice teams and caregivers, regardless of proximity, distance communication training for hospice teams and interventions such as telehealth communication and virtual tools that enable triadic collaboration are recommended. Research is needed to understand why local caregivers, specifically, perceive communication quality less favorably and how hospice teams can better meet local and distance caregiver communication needs.


Assuntos
Cuidados Paliativos na Terminalidade da Vida , Hospitais para Doentes Terminais , Humanos , Cuidadores , Cuidados Paliativos , Comunicação
10.
Am J Hosp Palliat Care ; 41(6): 619-633, 2024 Jun.
Artigo em Inglês | MEDLINE | ID: mdl-37491002

RESUMO

BACKGROUND: Assessing and managing hospice patients' pain is a common source of anxiety among hospice family caregivers (HFCGs), especially caregivers in rural communities who face special challenges including distance, limited access, and concerns about opioid misuse. OBJECTIVE: To pilot test Ready2Care, a pain management education intervention for rural HFCGs. We sought to determine whether there was a signal of benefit for clinically-relevant outcomes and to identify contextual factors pertinent to conducting a future randomized clinical trial of Ready2Care. METHODS: We conducted a multi-method, single-arm study, enabling completion of paired t-tests comparing pre- and post-intervention measures of caregiver anxiety, pain management self-efficacy, barriers to pain management, and reports of patient pain intensity and corresponding patient and caregiver distress. We concurrently conducted an embedded implementation evaluation via calculation of descriptive statistics (recruitment and retention data) and directed content analysis of brief caregiver interviews. RESULTS: Twenty-seven (n = 27) HFCGs participated; 15 completed the study. Among completers, significant improvement was observed in patient pain intensity (average 1.4 points decrease on 0-10 scale) and in overall pain experience. No statistically significant changes were detected in caregiver anxiety, barriers to pain management, or pain management self-efficacy. Facilitators to successful conduct of a future clinical trial included high acceptability of Ready2Care, driven by its perceived clarity and relevance to caregivers' concerns. Barriers included lower-than-anticipated accrual and an attrition rate of nearly 44%. CONCLUSION: A multisite clinical trial of Ready2Care is warranted; however, its success may require more effective recruitment and retention strategies for rural caregiver participants.

11.
Am J Hosp Palliat Care ; 41(2): 228-239, 2024 Feb.
Artigo em Inglês | MEDLINE | ID: mdl-36977504

RESUMO

Background: Hospice is intended to promote the comfort and quality of life of dying patients and their families. When patients are discharged from hospice prior to death (ie, experience a "live discharge"), care continuity is disrupted. This systematic review summarizes the growing body of evidence on live discharge among hospice patients with Alzheimer's Disease and related dementias (ADRD), a clinical subpopulation that disproportionately experiences this often burdensome care transition. Methods: Researchers conducted a systematic review in accordance with the Preferred Reporting Items for Systematic Reviews and Meta-Analyses (PRISMA) guidelines. Reviewers searched AgeLine, APA PsycINFO (Ovid), CINAHL Plus with Full Text, ProQuest Dissertations & Theses Global, PubMed, Scopus, and Web of Science (Core Collection). Reviewers extracted data and synthesized findings from 9 records, which reported findings from 10 individual studies. Results: The reviewed studies, which were generally of high quality, consistently identified diagnosis of ADRD as a risk factor for live discharge from hospice. The relationship between race and live hospice discharge was less clear and likely dependent upon the type of discharge under investigation and other (eg, systemic-level) factors. Research on patient and family experiences underscored the extent to which live hospice discharge can be distressing, confusing, and associated with numerous losses. Conclusion: Research specific to live discharge among ADRD patients and their families is limited. Synthesis across included studies points to the importance for future research to differentiate between types of live discharge-revocation vsversus decertification-as these are vastly different experiences in choice and circumstances.


Assuntos
Doença de Alzheimer , Cuidados Paliativos na Terminalidade da Vida , Hospitais para Doentes Terminais , Humanos , Alta do Paciente , Qualidade de Vida
12.
Am J Hosp Palliat Care ; : 10499091231218455, 2023 Nov 22.
Artigo em Inglês | MEDLINE | ID: mdl-37991051

RESUMO

Home health aides (HHAs) care for patients highly vulnerable to COVID-19 and are disproportionately women from minority communities that have been adversely impacted by COVID-19. Yet, direct care workers are less likely to be vaccinated against COVID-19 compared to others. As the pandemic evolves, interest in vaccination may decrease suggesting the need for relevant vaccine messaging to HHAs. Objectives: (1) to describe HHAs and administrators' perspectives related to COVID-19 vaccination messaging, and (2) to co-design a Communication Toolkit to create COVID-19 vaccine messages. Methods: HHAs and administrators from 4 geographically diverse Palliative Care Research Cooperative (PCRC) hospice agencies were recruited for a multi-method process involving qualitative interviews (17 HHAs and 5 administrators), community engagement (CE) studios, and development of a Communication Toolkit. Interviews were guided by the PEN-3 conceptual framework to explore barriers and facilitators to vaccination. Data were analyzed using qualitative content analysis. Results: Despite power differences, HHAs and administrators share a commitment to protecting patients affected by serious illness. HHAs desire vaccine messaging that includes personal narratives, good news about the vaccine, and facts about benefits and risks of the vaccine. Preferred message formats include the agency intranet, daily briefings, or "little seeds" (ie, short, high-impact information). Through the studios, HHAs provided input on a Toolkit prototype with messages tailored to the context of home care. Conclusions: Grounded in the commitment of HHAs and administrators to protecting vulnerable patients, we co-created an adaptable Communication Toolkit to address COVID-19 vaccination misinformation and mistrust among direct care workers.

13.
Muscle Nerve ; 68(6): 865-872, 2023 Nov.
Artigo em Inglês | MEDLINE | ID: mdl-37823580

RESUMO

INTRODUCTION/AIMS: Instruments have been developed to assess quality of life (QoL) among people with amyotrophic lateral sclerosis (ALS). It is unclear whether these are utilized regularly in the clinical setting to guide individual patient care. In this study we aimed to understand the current use of instruments and existing barriers to assessing QoL in clinical ALS care. METHODS: An anonymous survey developed by Northeast ALS (NEALS) Consortium Palliative Committee members was distributed to all multidisciplinary NEALS members. Data were summarized via calculation of descriptive statistics. ALS Center characteristics were compared using chi-square and Fisher exact tests for categorical variables. RESULTS: Seventy-three (6.4%) of the 1132 NEALS members responded to the survey, representing 148 clinics, 49.3% of whom reported assessing QoL during clinic visits. The most used ALS-specific instruments were the ALS Assessment Questionnaire (19.4%) and Amyotrophic Lateral Sclerosis Specific Quality of Life scale (16.6%). Barriers reported were uncertainty regarding which instrument to use and length of visits. QoL assessment was not significantly correlated with length of clinic visit but with access to specialty palliative care. DISCUSSION: QoL assessments are performed by some, but not all, ALS centers during clinical visits. Although this study did have a low number of responding centers, the percentage, the proportion is similar to that seen in earlier studies, which limits the findings' generalizability. The value of QoL assessments' impact on outcomes should be further investigated and, if warranted, creative ways sought to increase the frequency of their use, including patient self-assessments before clinic and/or the use of teleheath to reduce the length of clinic visits.


Assuntos
Esclerose Lateral Amiotrófica , Qualidade de Vida , Humanos , Esclerose Lateral Amiotrófica/diagnóstico , Esclerose Lateral Amiotrófica/terapia , Cuidados Paliativos , Inquéritos e Questionários , Assistência Ambulatorial
14.
Int J Speech Lang Pathol ; : 1-12, 2023 Sep 08.
Artigo em Inglês | MEDLINE | ID: mdl-37682054

RESUMO

Purpose: To evaluate the reliability, validity, and diagnostic accuracy (sensitivity, specificity) of the Intelligibility in Context Scale in Saudi Arabic (ICS-SA) and English (ICS-E) as potential measures of functional speech intelligibility in bilingual preschool-aged Saudi Arabian children.Method: The study included 36 parent-child (aged 3;0 to 6;5 years; months) dyads who were bilingual speakers of Saudi Arabic and English, which included two groups-typically developing (TD, n = 29) and suspected speech sound disordered (sSSD, n = 7). The children's intelligibility was evaluated in both languages using the ICS-SA and ICS-E. Children's single-word productions were collected in both languages and calculated for percentage of consonants, vowels, and phonemes correct (i.e. PCC/PVC/PPC) to establish their speech-sound competence.Result: The mean scores for the entire sample (n = 36) were 4.43 (SD = 0.79) for the ICS-SA and 4.48 (SD = 0.79) for the ICS-E, showing that parents rated their children's intelligibility in both languages similarly. Both the ICS-SA and ICS-E demonstrated excellent internal consistency (α = 0.96 and α = 0.95, respectively). There was high inter-rater and test-retest reliability for the ICS-SA, while there was fair to high inter-rater and test-retest reliability in ICS-E. Significant correlations were found for the ICS-SA, but weak correlations were noted for the ICS-E, which indicated fair to moderate evidence of criterion validity. Construct validity efforts indicated a weak correlation with age on both the ICS-SA and ICS-E. The findings also indicated high discriminant accuracy for both the ICS-SA (0.86, 0.86) and ICS-E (0.71, 0.69).Conclusion: This study provides initial validation and reliability evidence for using the ICS-SA and ICS-E with Saudi Arabic- and English-speaking preschoolers, however, ICS-E scores suggest further testing is warranted. By extension, these findings expand the bilingual knowledge base and offer new tools for identifying children in Saudi Arabia who may be at risk for having a speech sound disorder.

15.
Death Stud ; : 1-8, 2023 Sep 19.
Artigo em Inglês | MEDLINE | ID: mdl-37725580

RESUMO

Sense making is especially common in bereavement when a death challenges an individual's existing worldview. Thus, it is often discussed in the context of statistically atypical deaths, such as the death of a child or death by suicide, that are apt to create a crisis of meaning. Less understood is the process of sense making following more statistically normative deaths, such as those that occur in old age following prolonged illness. In this descriptive phenomenological study, researchers analyzed qualitative interviews and digital narratives created by six individuals who had experienced the death of an older family member with dementia, seeking to identify the essential nature of sense making during bereavement following so-called "normal" losses. Three themes (memorializing the whole person, reflecting on the caregiving experience, and emotional sense making) were identified, shedding light on this specific meaning making process among individuals representing a large and growing segment of the population.

16.
Am J Hosp Palliat Care ; : 10499091231194359, 2023 Aug 03.
Artigo em Inglês | MEDLINE | ID: mdl-37537930

RESUMO

Objectives: Family members and close friends provide countless hours of care for patients enrolled in hospice care. They do so without pay, often sacrificing their own financial well-being and health in the process. This study asks 4 research questions: (1) What is the prevalence and severity of depressive symptoms among caregivers of hospice cancer patients? (2) What demographic and contextual factors (such as relationship with patient) are related to the severity of depressive symptoms among caregivers of hospice cancer patients? (3) Are caregiver quality of life and caregiver burden associated with depressive symptoms? and (4) Is baseline depression associated with change in depression over time? Methods: This was a secondary analysis of data collected in a cluster randomized controlled trial. Results: Thirty-five percent of caregivers reported depressive symptoms of moderate or greater severity. These depressive symptoms were found to increase depending on the relationship of the caregiver to the patient. Caregivers with higher reported burden and lower reported quality of life were also found to have higher depressive symptoms. Significance of Results: Hospice agencies are encouraged to assess caregiver depressive symptoms and have protocols in place to assist caregivers with high depressive symptoms.

17.
J Speech Lang Hear Res ; 66(12): 4716-4738, 2023 12 11.
Artigo em Inglês | MEDLINE | ID: mdl-37549376

RESUMO

PURPOSE: There is a shortage of available methods to accurately inform the developmental status of children whose cultural and linguistic backgrounds vary from the mainstream. The purpose of this review article was to describe different approaches used to support the accurate characterization of speech, language, and functional communication in children speaking Jamaican Creole and English, an understudied paradigm in the speech pathology research. METHOD: Approaches used across four previously published studies in the Jamaican Creole Language Project are described. Participants included 3- to 6-year-old Jamaican children (n = 98-262) and adults (n = 15-33). Studies I and II described validation efforts about children's functional communication using the Intelligibility in Context Scale (ICS; speech) and the Focus on the Outcomes of Communication Under Six (FOCUS; speech and language). Study III described efforts to accurately characterize difference and disorder in children's expressive grammar using adapted scoring, along with adult models to contextualize child responses. Last, Study IV applied acoustic duration (e.g., whole word) and an adapted scoring protocol to inform variation in speech sound productions in the Jamaican context where a post-Creole continuum exists. RESULTS: Studies I and II offered promising psychometric evidence about the utility of the ICS and the FOCUS. Study III revealed strong sensitivity and specificity in classifying difference and disorder using adult models. Last, in Study IV, linguistically informed acoustic analyses and an adapted protocol captured variation in speech productions better than a standard approach. CONCLUSIONS: Applying culturally responsive methods can enhance the accurate characterization of speech, language, and functional communication in Jamaican children. The innovative methods used offer a model approach that could be applied to other linguistic contexts where a mismatch exists between speech-language pathologists and their clientele. PRESENTATION VIDEO: https://doi.org/10.23641/asha.23929461.


Assuntos
Transtornos da Comunicação , Idioma , Criança , Humanos , Pré-Escolar , Jamaica , Fala , Fonética
18.
Clin Linguist Phon ; : 1-19, 2023 Jun 26.
Artigo em Inglês | MEDLINE | ID: mdl-37363955

RESUMO

Regardless of the underlying cause for speech impairment in speakers with cleft palate, a universal consequence of cleft palate is reduced speech intelligibility. Still, there is no standardised approach for measuring intelligibility for speakers with cleft speech. The current study aimed to determine the relationship between orthographic transcription (OT)-based measures, interval-scale ratings, and visual analog scale (VAS) ratings for perceptual judgements of intelligibility in speakers with cleft palate as judged by speech-language pathologists (SLPs). The speaker participants were six speakers with velopharyngeal insufficiency secondary to cleft palate. Four sets of sentences from the Hearing in Noise Test were recorded from each speaker. A total of 14 SLPs provided their intelligibility judgement on these speaker's recordings by word-by-word orthographic transcriptions, a visual analog scale (0-100), and a 5-point interval rating scale. A Spearman rank correlation test indicated a negative, strong correlation between OT-based measurements and VAS scores (r = -.94; p = 0.01) and between OT-based measurements and interval rating scores (r = -.77, p = 0.01). A strong, positive correlation was found between scores obtained from VAS and interval rating scales (r = .83, p = 0.05). The strong relationship between the objective measure of intelligibility (i.e. OT-based measure) and a subjective measure of intelligibility (i.e. VAS and interval scale) supports using a less time-consuming VAS as a substitute for orthographic transcription in measuring intelligibility in cleft palate speech.

19.
J Fam Nurs ; 29(3): 275-287, 2023 Aug.
Artigo em Inglês | MEDLINE | ID: mdl-37190779

RESUMO

The difficulties of caring for a family member with advanced cancer are well documented. Support from a caregiver's social network-especially other family-is vital to reducing caregiver burden and psychological distress. However, the family environment is not always supportive as reports of family conflict and dissatisfaction with support are common. Despite knowing that family relationships are complex, little is known about the types of family stress that caregivers of advanced cancer patients face in their daily lives. To address this gap, researchers applied concepts from the double ABCX model to conduct a reflexive thematic analysis of interviews with 63 caregivers of cancer patients receiving outpatient palliative care. Four themes of family stress were identified: failed support, relational tensions, denial, and additional care work. Findings inform clinical assessment and caregiver intervention development by revealing the importance of measuring the mundane machinations of family life for caregivers of adult cancer patients.


Assuntos
Cuidadores , Neoplasias , Adulto , Humanos , Cuidadores/psicologia , Cuidados Paliativos/psicologia , Sobrecarga do Cuidador , Neoplasias/psicologia , Família/psicologia , Relações Familiares , Conflito Familiar , Qualidade de Vida
20.
Omega (Westport) ; : 302228231169150, 2023 Apr 05.
Artigo em Inglês | MEDLINE | ID: mdl-37017406

RESUMO

Digital Storytelling (DS) is a narrative intervention that supports participants' ability to find meaning in their life experiences - in this case, bereavement after child death. Thirteen (N = 13) bereaved parents engaged in a DS workshop in which they created a story about the death of their child. Using a descriptive phenomenological approach, researchers explored participants' experience with child death via their completed digital stories. Results highlight connection as a pathway to meaning making for bereaved parents who participate in DS, specifically in regard to connection with other bereaved parents and connection with their deceased child via telling their story.

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