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PURPOSE: Childhood apraxia of speech (CAS) is a communication deficit that impacts a child's overall quality of life, including their academic and social interactions, yet few studies have investigated the impact from the child's perspective. Using The World Health Organization's International Classification of Functioning, Disability, and Health (ICF) framework, we examined the children's and caregivers' perspectives on the impact of CAS on their overall wellbeing. METHOD: Survey data were collected from 32 child-caregiver dyads for children ages 9-17 years with CAS. Items elicited responses along a 5-point scale to examine the perceived impact of children's speech impairments using the framework, including impact on communication, interpersonal interactions/relationships, and major life events. RESULT: Results from non-parametric statistical analyses revealed: (a) caregivers reported a significantly greater impact than children across individual ICF domains; (b) child responses were not significantly correlated with their caregiver's responses or with the child's age, gender, or severity indicators; and (c) both caregivers and children indicated the domain of communication was impacted more than other domains. CONCLUSION: Results suggest a potential disconnect in the perceived impact of CAS between the caregiver and child. Recommendations include facilitating a dialogue between the child-caregiver dyad and considering treatment goals that address wellbeing.
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Increasing rates of child neurodevelopmental vulnerability are a significant public health challenge. The adverse effect of socioeconomic adversity on offspring cognition may be mediated through elevated prenatal maternal systemic inflammation, but the role of modifiable antecedents such as maternal nutrition has not yet been clarified. This study aimed to examine (1) whether prenatal factors, with an emphasis on maternal nutrition, were associated with prenatal maternal systemic inflammation at 28â¯weeks' gestation, including the metabolomic marker glycoprotein acetyls (GlycA); (2) the extent to which the association between prenatal maternal nutrition and child cognition and language at age two years was mediated by elevated maternal inflammation in pregnancy; (3) the extent to which the associations between prenatal socioeconomic adversity and child neurodevelopment were mediated through prenatal maternal nutrition and GlycA levels. We used a prospective population-derived pre-birth longitudinal cohort study, the Barwon Infant Study (Barwon region of Victoria, Australia), where 1074 mother-child pairs were recruited by 28â¯weeks' gestation using an unselected sampling frame. Exposures included prenatal factors such as maternal diet measured by a validated food frequency questionnaire at 28â¯weeks' gestation and dietary patterns determined by principal component analysis. The main outcome measures were maternal inflammatory biomarkers (GlycA and hsCRP levels) at 28â¯weeks' gestation, and offspring Bayley-III cognition and language scores at age two years. Results showed that the 'modern wholefoods' and 'processed' maternal dietary patterns were independently associated with reduced and elevated maternal inflammation respectively (GlycA or hsCRP pâ¯<â¯0.001), and also with higher and reduced offspring Bayley-III scores respectively (cognition pâ¯≤â¯0.004, language pâ¯≤â¯0.009). Associations between dietary patterns and offspring cognition and language were partially mediated by higher maternal GlycA (indirect effect: cognition pâ¯≤â¯0.036, language pâ¯≤â¯0.05), but were less evident for hsCRP. The maternal dietary patterns mediated 22â¯% of the association between socioeconomic adversity (lower maternal education and/or lower household income vs otherwise) and poorer offspring cognition (indirect effect pâ¯=â¯0.001). Variation in prenatal GlycA levels that were independent of these dietary measures appeared less important. In conclusion, modifiable prenatal maternal dietary patterns were associated with adverse child neurocognitive outcomes through their effect on maternal inflammation (GlycA). Maternal diet may partially explain the association between socioeconomic adversity and child neurocognitive vulnerability. Maternal diet-by-inflammation pathways are an attractive target for future intervention studies.
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The life experiences of children with cancer and their parents as individuals have been well documented in literature. However, little is known about their experiences as child-parent dyads in Pakistan regarding these children's quality of life. Thus, the study was conducted in the context of the family-centric society of Pakistan. In-depth interviews were conducted with 28 participants (14 child-parent dyads), comprising 9 female and 5 male children receiving cancer treatment and 8 mothers and 6 fathers (primary caregivers). All the participants were Muslims and hailed from diverse ethnic backgrounds, and most belonged to middle socioeconomic backgrounds. Thematic analysis was performed using Braun and Clarke's (2006) framework, which revealed four themes: (1) Stress, Fears, and Optimism; (2) Reactions to Restrictions; (3) Adaptation and Coping; and (4) Support Structure and Mechanisms. The findings indicated that children's and parents' daily lives were affected in various ways during the children's cancer journey. They faced several challenges which impacted their well-being. Particularly, the children considered their symptoms as restrictions in the way of carrying out their routine lives. However, children and parents also elaborated on using different coping strategies, such as play, reminiscing the past, incorporating religious practices into their daily routines, and keeping a family-centred approach towards the child's care. The parents also recommended that cancer-specialised services and support groups should be accessible. Conclusively, these findings are useful for healthcare providers in giving family-centred care to afflicted families and devising innovative interventions that address the needs of children with cancer and improve their quality of life.
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Profile similarity measures are used to quantify the similarity of two sets of ratings on multiple variables. Yet, it remains unclear how different measures are distinct or overlap and what type of information they precisely convey, making it unclear what measures are best applied under varying circumstances. With this study, we aim to provide clarity with respect to how existing measures interrelate and provide recommendations for their use by comparing a wide range of profile similarity measures. We have taken four steps. First, we reviewed 88 similarity measures by applying them to multiple cross-sectional and intensive longitudinal data sets on emotional experience and retained 43 useful profile similarity measures after eliminating duplicates, complements, or measures that were unsuitable for the intended purpose. Second, we have clustered these 43 measures into similarly behaving groups, and found three general clusters: one cluster with difference measures, one cluster with product measures that could be split into four more nuanced groups and one miscellaneous cluster that could be split into two more nuanced groups. Third, we have interpreted what unifies these groups and their subgroups and what information they convey based on theory and formulas. Last, based on our findings, we discuss recommendations with respect to the choice of measure, propose to avoid using the Pearson correlation, and suggest to center profile items when stereotypical patterns threaten to confound the computation of similarity.
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BACKGROUND: With changing cognitive abilities, individuals with mild cognitive impairment (MCI) and dementia face challenges in successfully managing multidrug regimens. We sought to understand how individuals with MCI or dementia and their family caregivers manage multidrug regimens and better understand patient-to-caregiver transitions in medication management responsibilities. METHODS: We conducted qualitative interviews among patient-caregiver dyads. Eligibility included: patients with a diagnosis of MCI, mild or moderate dementia, managing ≥3 chronic conditions, ≥5 prescription medications, who also had a family caregiver ≥18 years old. Semi-structured interview guides, informed by the Medication Self-Management model, ascertained roles and responsibilities for medication management and patient-to-caregiver transitions in medication responsibilities. RESULTS: We interviewed 32 patient-caregiver dyads. Older adults and caregivers favored older adult autonomy in medication management, and individuals with MCI and mild dementia largely managed their medications independently using multiple strategies (e.g., establishing daily routines, using pillboxes). Among individuals with moderate dementia, caregivers assumed all medication-related responsibilities except when living separately. In those scenarios, caregivers set up organizers and made reminder calls, but did not observe family members taking medications. Patient-to-caregiver transitions in medication responsibilities frequently occurred after caregivers observed older adults making errors with medications. As caregivers sought to assume greater responsibilities with family members' medicines, they faced multiple barriers. Most barriers were dyadic; they affected both the older adult and the caregiver and/or the relationship. Some barriers were specific to caregivers; these included caregivers' competing responsibilities or inaccurate perceptions of dementia, while other barriers were related to the healthcare system. CONCLUSIONS: To ease medication management transitions, balance must be sought between preservation of older adult autonomy and early family caregiver involvement. Clinicians should work to initiate conversations with family caregivers and individuals living with MCI or dementia about transitioning medication responsibilities as memory loss progresses, simplify regimens, and deprescribe, as appropriate.
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INTRODUCTION: People with dementia and their family carers may benefit from non-pharmacological interventions, including mind-body (MB-) practices, which can improve physical and mental health by inducing relaxation. This systematic review provides an overview of availability and effects of MB-practices. CONTENT: The authors performed a systematic search in PubMed, Embase, Emcare, Web of Science, Cochrane Library, PsycINFO, China National Knowledge Infrastructure and Academic Search Premier on February 1, 2024. Research papers on MB-practices for people with dementia and/or their family carers in English, Chinese, Japanese, German, French and Dutch were included if a full text was available. Selection of included articles, data extraction and methodological quality assessments were conducted by two researchers. SUMMARY: Of the 130 included studies, 100 (77â¯%) were of high quality. Traditional Chinese Medicine (TCM) and touch interventions for people with dementia, and meditations for family carers resulted in improvements in respectively cognition and neuropsychiatric symptoms, and mental health. Lack of evidence for other MB-practices is related to small numbers of studies, fragmented use of outcome measures and mixed findings. OUTLOOK: MB-practices showed promising results. We recommend implementation and further research of TCM- and touch interventions for people with dementia as well as meditations for family carers. We suggest a cross-over of the promising results of one group to be studied in the other group.
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BACKGROUND: Research has established the effects of romantic relationships on individuals' morbidity and mortality. However, the interplay between relationship functioning, affective processes, and health behaviors has been relatively understudied. During the COVID-19 pandemic, relational processes may influence novel health behaviors such as social distancing and masking. OBJECTIVE: We describe the design, recruitment, and methods of the relationships, risk perceptions, and cancer-related behaviors during the COVID-19 pandemic study. This study was developed to understand how relational and affective processes influence romantic partners' engagement in cancer prevention behaviors as well as health behaviors introduced or exacerbated by the COVID-19 pandemic. METHODS: The relationships, risk perceptions, and cancer-related behaviors during the COVID-19 pandemic study used online survey methods to recruit and enroll 2 cohorts of individuals involved in cohabiting romantic relationships, including 1 cohort of dyads (n=223) and 1 cohort of cancer survivors (n=443). Survey assessments were completed over 2 time points that were 5.57 (SD 3.14) weeks apart on average. Health behaviors assessed included COVID-19 vaccination and social distancing, physical activity, diet, sleep, alcohol use, and smoking behavior. We also examined relationship factors, psychological distress, and household chaos. RESULTS: Data collection occurred between October 2021 and August 2022. During that time, a total of 926 participants were enrolled, of which about two-thirds were from the United Kingdom (n=622, 67.8%) and one-third were from the United States (n=296, 32.2%); about two-thirds were married (n=608, 66.2%) and one-third were members of unmarried couples (n=294, 32%). In cohorts 1 and 2, the mean age was about 34 and 50, respectively. Out of 478 participants in cohort 1, 19 (4%) identified as Hispanic or Latino/a, 79 (17%) as non-Hispanic Asian, 40 (9%) as non-Hispanic Black or African American, and 306 (64%) as non-Hispanic White; 62 (13%) participants identified their sexual orientation as bisexual or pansexual, 359 (75.1%) as heterosexual or straight, and 53 (11%) as gay or lesbian. In cohort 2, out of 440 participants, 13 (3%) identified as Hispanic or Latino/a, 8 (2%) as non-Hispanic Asian, 5 (1%) as non-Hispanic Black or African American, and 398 (90.5%) as non-Hispanic White; 41 (9%) participants identified their sexual orientation as bisexual or pansexual, 384 (87.3%) as heterosexual or straight, and 13 (3%) as gay or lesbian. The overall enrollment rate for individuals was 66.14% and the overall completion rate was 80.08%. CONCLUSIONS: We discuss best practices for collecting online survey data for studies examining relationships and health, challenges related to the COVID-19 pandemic, recruitment of underrepresented populations, and enrollment of dyads. Recommendations include conducting pilot studies, allowing for extra time in the data collection timeline for marginalized or underserved populations, surplus screening to account for expected attrition within dyads, as well as planning dyad-specific data quality checks. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/48516.
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COVID-19 , Supervivientes de Cáncer , Conductas Relacionadas con la Salud , Neoplasias , Humanos , COVID-19/epidemiología , COVID-19/psicología , COVID-19/prevención & control , Supervivientes de Cáncer/psicología , Masculino , Femenino , Estudios Longitudinales , Adulto , Neoplasias/psicología , Persona de Mediana Edad , Parejas Sexuales/psicología , Pandemias , Relaciones Interpersonales , Encuestas y CuestionariosRESUMEN
The existing literature consistently finds that emotional experiences and cortisol secretion are linked at the within-person level. Further, relationship partners tend to covary in emotional experience, and in cortisol secretion. However, we are only beginning to understand whether and how an individuals' emotions are linked to their relationship partners' cortisol secretion. In this project, we harmonized data from three intensive measurement studies originating from Canada and Germany to investigate the daily dynamics of emotions and cortisol within 321 older adult couples (age range=56-87 years). Three-level multilevel models accounted for the nested structure of the data (repeated assessments within individuals within couples). Actor-Partner Interdependence Models were used to examine the effect of own emotional experiences (actor effects) and partner emotional experiences (partner effects) on momentary and daily cortisol secretion. Adjusting for age, sex, education, comorbidities, assay version, diurnal cortisol rhythm, time spent together, medication, and time-varying behaviors that may increase cortisol secretion, results suggest that higher relationship partner's positive emotions are linked with lower momentary cortisol and total daily cortisol. Further, this association was stronger for older participants and those who reported higher relationship satisfaction. We did not find within-couple links between negative emotions and cortisol. Overall, our results suggest that one's relationship partner's positive emotional experience may be a protective factor for their physiological responding, and that these more fleeting and day-to-day fluctuations may accumulate over time, contributing to overall relationship satisfaction.
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Emociones , Hidrocortisona , Saliva , Humanos , Hidrocortisona/metabolismo , Hidrocortisona/análisis , Anciano , Masculino , Femenino , Anciano de 80 o más Años , Persona de Mediana Edad , Emociones/fisiología , Saliva/química , Saliva/metabolismo , Esposos/psicología , Parejas Sexuales/psicología , Relaciones Interpersonales , Alemania , Canadá , Satisfacción Personal , Estrés Psicológico/metabolismo , Estrés Psicológico/psicologíaRESUMEN
Adult verbal input occurs frequently during parent-child interactions. However, few studies have considered how parent language varies across informal STEM (science, technology, engineering, and math) activities. In this study, we examined how open and closed parent questions (a) differed across three STEM activities and (b) related to math, science, and vocabulary knowledge in their preschool-aged children. A total of 173 parents and their preschool children (Mage = 4 years) from lower socioeconomic households were video-recorded participating in three STEM-related activities: (a) a pretend grocery store activity, (b) a bridge-building challenge, and (c) a book read about a science topic. Parent questions were categorized as open or closed according to the presence of key question terms. Results indicate that the three activities elicited different frequencies of parent open and closed questions, with the grocery store activity containing the most open and closed questions. Children's science knowledge was predicted by the frequency and proportion of parent open questions during the book read. These results enhance our understanding of the role of parent questions in young children's language environments in different informal learning contexts.
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Ingeniería , Aprendizaje , Matemática , Relaciones Padres-Hijo , Ciencia , Tecnología , Humanos , Preescolar , Masculino , Femenino , Matemática/educación , Ciencia/educación , Ingeniería/educación , Adulto , Padres/psicología , VocabularioRESUMEN
Objectives: This study investigates the alignment of awareness, attitudes, and preferences regarding hospice care between older Chinese immigrants and their adult children. Methods: Forty older Chinese immigrants and their adult children in New York City were assessed for their awareness, attitudes, and preferences for hospice care. McNemar's and Cohen's Kappa tests examined differences and congruence within parent-child dyads. The Actor-Partner Interdependence Model (APIM) was employed for dyadic analysis using structural equation modeling (SEM). Results: Discrepancies were observed between older parents and adult children, with the latter showing higher awareness and more positive attitudes toward hospice care compared to their parents. While 84.2% of older parents expressed willingness to accept hospice care, only 65.7% of their children believed their parents would desire hospice, and only 39.5% of children expressed a preference for hospice care for their parents. Kappa coefficients indicated poor-to-slight agreement within parent-child dyads, but there was a fair level of agreement in children's perceptions of their parents' preferences and their own preferences for parents. APIM revealed significant actor effects but nonsignificant partner effects, suggesting that parents' and children's preferences are influenced by their own attitudes, but not by those of other family members within the parent-child dyads. Conclusion: The incongruence in attitudes and preferences for hospice care between Chinese immigrant older adults and their children emphasizes the need for culturally-informed education and interventions to facilitate open conversations and ensure patient-centered end-of-life care for older Chinese immigrants.
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This protocol paper outlines an innovative multimodal and multilevel approach to studying the emergence and evolution of how children build social bonds with their peers, and its potential application to improving social artificial intelligence (AI). We detail a unique hyperscanning experimental framework utilizing functional near-infrared spectroscopy (fNIRS) to observe inter-brain synchrony in child dyads during collaborative tasks and social interactions. Our proposed longitudinal study spans middle childhood, aiming to capture the dynamic development of social connections and cognitive engagement in naturalistic settings. To do so we bring together four kinds of data: the multimodal conversational behaviors that dyads of children engage in, evidence of their state of interpersonal rapport, collaborative performance on educational tasks, and inter-brain synchrony. Preliminary pilot data provide foundational support for our approach, indicating promising directions for identifying neural patterns associated with productive social interactions. The planned research will explore the neural correlates of social bond formation, informing the creation of a virtual peer learning partner in the field of Social Neuroergonomics. This protocol promises significant contributions to understanding the neural basis of social connectivity in children, while also offering a blueprint for designing empathetic and effective social AI tools, particularly for educational contexts.
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BACKGROUND: Receiving a diagnosis of cancer is a profound and often very stressful experience. Few studies have prospectively recruited patients prior to receiving a new diagnosis of cancer and included spouses or partners. OBJECTIVE: The aim of the Couples Cope Study is to understand the impact of undergoing a diagnostic biopsy and receiving a new cancer diagnosis on quality of life (QoL) in both patients and their spouses or partners, as well as on the quality of their relationship. This protocol paper describes the study design and assesses the feasibility of recruitment and retention. METHODS: Study staff reviewed the schedules of collaborating physicians using specific encounter codes to identify patients scheduled for breast or prostate biopsies. Potential participants were prescreened via the electronic health record and sent a recruitment letter at least 2 to 3 weeks prior to their biopsy procedure. Patients subsequently underwent a phone screening to determine eligibility. Patients who enrolled provided study staff with contact information for their spouses or partners. All consent forms were completed online. Surveys were completed online prior to receiving the biopsy results (baseline), and at 1, 3, 6, and 9 months after the biopsy. Study staff engaged in ongoing, personalized contact with participants and sent assessment completion reminders via phone and email. RESULTS: A total of 2294 patients undergoing a breast or prostate biopsy were identified and 69% (n=1582) were eligible for phone screening following electronic health record prescreening. Of the 431 patients who underwent phone screening, 75% (n=321) were eligible to participate. Of the eligible patients, 72% (n=231) enrolled and 82% (n=190) of enrolled patients had an accompanying partner or spouse who also enrolled. A total of 77% (34/44) of patients who received a cancer diagnosis and 72% (26/36) of their spouses or partners were retained through 9 months, while 80% (53/66) of patients who received a benign diagnosis and 68% (42/62) of their partners were retained. CONCLUSIONS: Prospective recruitment of patients undergoing diagnostic biopsy and their partners is feasible and requires both strategic collaboration with providers and concerted prescreening and recruitment efforts by study staff. Importantly, this study was able to conduct all study activities online without disrupting clinical workflow and without requiring patients and their spouses or partners to come into the laboratory. Consideration should be given to the ratio of biopsies to cancer diagnoses, which can vary significantly by cancer type. Prospective studies are needed and can inform our ability to provide effective support earlier to couples facing a possible cancer diagnosis. Future studies should examine other tumor types that have received less attention in QoL studies, include behavioral and neurobiological assessments beyond self-report measures, and follow couples beyond 9 months in order to examine long-term effects on QoL. INTERNATIONAL REGISTERED REPORT IDENTIFIER (IRRID): DERR1-10.2196/52361.
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Calidad de Vida , Esposos , Humanos , Esposos/psicología , Estudios Prospectivos , Masculino , Calidad de Vida/psicología , Femenino , Biopsia/psicología , Biopsia/métodos , Neoplasias de la Mama/patología , Neoplasias de la Mama/psicología , Neoplasias de la Mama/diagnóstico , Neoplasias de la Próstata/patología , Neoplasias de la Próstata/psicología , Neoplasias de la Próstata/diagnóstico , Persona de Mediana Edad , Adulto , Neoplasias/psicología , Neoplasias/patología , Neoplasias/diagnóstico , AncianoRESUMEN
OBJECTIVES: People with dementia (PwD) and their care partners (CP) may have difficulties in emotion regulation, and individual differences in emotion regulation may be related to PwD's neuropsychiatric symptoms. This study explores whether there is self-awareness of PwD's difficulties in emotion regulation and whether CP's emotion regulation relates to the PwD's neuropsychiatric symptoms, potentially revealing bias or interpersonal effects. METHOD: We used data from the Wish Outcome Obstacle Plan Study with a sample of 45 PwD and their spousal CP (n = 90 individuals). Multivariate linear regression models were used to investigate the associations between the CP-reported neuropsychiatric symptoms in PwD and self-reports of emotion regulation in both dyad members, net of sociodemographic and health factors. Separate analyses were conducted for each neuropsychiatric subsyndrome and each domain of difficulties in emotion regulation. RESULTS: Increasing severity of neuropsychiatric symptoms was associated with higher difficulties in emotion regulation in PwD (ß = 1.23, p < 0.05), but not with CP's difficulties in emotion regulation. When CP reported more severe neuropsychiatric symptoms in PwD, PwD reported that they had difficulties in accepting emotions, controlling impulses, goal-directed behaviors, and accessing emotion regulation strategies, but not in emotion awareness and clarification. Proxy-reports of hyperactivity and psychosis subsyndromes are significantly related to PwD's self-reported difficulties in emotion regulation. CONCLUSION: PwD reported difficulties in emotion regulation at the early stage of dementia. Proxy-reported neuropsychiatric symptoms may capture PwD's emotion regulation capability and not be biased by CP's difficulties in emotion regulation.
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Caregiver-infant interactions shape infants' early visual experience; however, there is limited work from low-and middle-income countries (LMIC) in characterizing the visual cognitive dynamics of these interactions. Here, we present an innovative dyadic visual cognition pipeline using machine learning methods which captures, processes, and analyses the visual dynamics of caregiver-infant interactions across cultures. We undertake two studies to examine its application in both low (rural India) and high (urban UK) resource settings. Study 1 develops and validates the pipeline to process caregiver-infant interaction data captured using head-mounted cameras and eye-trackers. We use face detection and object recognition networks and validate these tools using 12 caregiver-infant dyads (4 dyads from a 6-month-old UK cohort, 4 dyads from a 6-month-old India cohort, and 4 dyads from a 9-month-old India cohort). Results show robust and accurate face and toy detection, as well as a high percent agreement between processed and manually coded dyadic interactions. Study 2 applied the pipeline to a larger data set (25 6-month-olds from the UK, 31 6-month-olds from India, and 37 9-month-olds from India) with the aim of comparing the visual dynamics of caregiver-infant interaction across the two cultural settings. Results show remarkable correspondence between key measures of visual exploration across cultures, including longer mean look durations during infant-led joint attention episodes. In addition, we found several differences across cultures. Most notably, infants in the UK had a higher proportion of infant-led joint attention episodes consistent with a child-centered view of parenting common in western middle-class families. In summary, the pipeline we report provides an objective assessment tool to quantify the visual dynamics of caregiver-infant interaction across high- and low-resource settings.
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AIM: To synthesise the qualitative evidence on dyadic relationships between informal caregivers (ICs) and older adults with chronic heart failure (HF). METHODS AND RESULTS: A systematic review and meta-synthesis were conducted. Eight databases were searched for English peer-reviewed studies and grey literature published from inception to 27 February 2024. Qualitative and mixed-method studies involving older adults ≥ 55 years old with chronic HF and discussing patient-caregiver relationships in community settings were included. Data were synthesised using Sandelowski and Barroso's 2-step framework. A meta-summary was developed using thematic analysis, and findings were synthesised using the Theory of Dyadic Illness Management. Twenty-four studies from 2008 to 2024 were included (n = 580 participants). The meta-summary consisted of four themes and nine subthemes: (1) Characteristics of dyad relationships, (2) How both parts of the dyad care for each other, (3) Chronic HF and dyad relationships, (4) Knowledge of managing chronic HF. These were reorganised into the meta-synthesis: dyadic appraisal, dyadic management behaviours, dyadic health, contextual factors affecting dyadic relationships and management behaviours, and illness management as a dyadic phenomenon. CONCLUSION: Investigating relationship dynamics and their impact on dyads and chronic HF self-care is vital. Where possible, healthcare providers should prioritise dyadic care when caregivers are involved and deliver individualised care to improve patient and caregiver outcomes. Assessing and optimising dyadic relations, addressing individual perceptions and needs as part of clinical care, and before implementing self-care interventions in research may help ensure that self-care is appropriately tailored and would not be hindered by relationship conflicts.
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BACKGROUND: Cancer disproportionately affects Hispanic populations, yet the preparedness of Hispanic caregiver-patient dyads facing cancer remains understudied. This study aims to identify essential components of preparedness needs and inform future psychosocial interventions for this demographic. METHODS: Secondary analyses were conducted utilizing focus groups to develop a communication intervention for Hispanic patients and caregivers. Transcripts were qualitatively analyzed using NVivo v12 (2020). RESULTS: Analysis revealed symptom management and treatment comprehension as pivotal aspects of preparation. Additionally, preparedness among our sample emerged by addressing the multifaceted dimensions of preparedness, including psychological, emotional, educational, familial, practical, financial, and spiritual aspects. CONCLUSIONS: Tailoring interventions encompassing diverse dimensions of preparedness can foster inclusivity and maximize their impact on supportive measures. This underscores the necessity for culturally sensitive approaches when delivering interventions supporting Hispanic individuals navigating the challenges of cancer.
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Effects of parent-child dyad interventions on behavior remain unclear. This randomized controlled trial investigated if, compared with a control condition, three types of physical activity (PA) planning interventions (individual "I-for-me," dyadic "we-for-me," and collaborative "we-for-us") would reduce sedentary behavior (SB) time in parents and their children. The study involved 247 dyads comprising parents (aged 29-66) and their children (aged 9-15), randomized into one of the three types of PA planning-intervention arms or the control condition. Mixed models were applied to analyze data from a preregistered trial (NCT02713438) with the outcome of accelerometer-measured SB time, assessed at 1-week and 36-week follow-ups. Although children's SB remained unaffected by the planning interventions, a small reduction of SB time was found among parents in the collaborative (p = .048) and individual (p = .042) planning conditions. The effects were observed at the 1-week follow-up only. While short-term reductions in parents' SB were achieved, these were not sustained long-term. PA planning interventions delivered to parent-child dyads did not substantially reduce children's SB, which may be due to young people's needs of increased independence from their parents.
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INTRODUCTION: People in treatment for alcohol use disorders (AUDs) can negatively impact their Concerned Others (COs). This longitudinal study examined patient and CO characteristics associated with CO outcomes. METHOD: Participants were 279 dyads of patients entering residential treatment and their CO. Outcomes were COs' mental health and quality of life. The study collected patient and CO predictors and CO outcomes at baseline and 3-, 6-, and 12-month follow-ups as part of a randomized controlled trial. In the first set of models, the analytic approach identified baseline patient predictors associated with COs' outcomes measured at baseline and follow-ups. In the second set of models, we examined whether those effects remained after adding baseline CO characteristics. RESULTS: In the first set of models, COs of older age and whose patient reported less CO-patient relationship stress had better mental health. Also, married COs and those with higher income and whose patient reported no violence in the CO-patient relationship had better quality of life. In the second set of models, COs whose patient entered treatment due to criminal justice involvement, with more social support, less reported stigma, and less use of avoidance coping had better mental health. Also, married COs, those with higher income, and less reported discrimination stigma had better quality of life. CONCLUSIONS: Understanding patient and CO characteristics that are associated with COs' outcomes may inform AUD treatment programs' efforts to help COs. Identifying modifiable determinants of CO outcomes is important to clinical practice regardless of whether the patient chooses to obtain treatment.
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Alcoholismo , Salud Mental , Calidad de Vida , Humanos , Calidad de Vida/psicología , Masculino , Femenino , Estudios Longitudinales , Adulto , Persona de Mediana Edad , Alcoholismo/psicología , Alcoholismo/terapia , Apoyo Social , Adaptación Psicológica , Estigma Social , Estrés Psicológico/psicología , Estrés Psicológico/terapia , Factores de EdadRESUMEN
Early infant development is a maturation process critically depends on the infant's interaction with primary caregivers. Hence, neonatal units prioritize their proximity. In COVID-19, parental visitation hours were limited, reducing caregivers time with their infants. This follow-up study analyzes and compares levels of maternal depression and stress, infant development, and bonding quality in preterm mother-infant dyads hospitalized, before and during the pandemic. Out of 66 dyads participated, 36 were admitted before COVID-19, and 30 during COVID-19. The assessed was two video-call sessions in which mothers completed selected questionnaires. No significant differences between mothers' levels of depression and stress. However, low birth weight was associated with greater difficulties in children's communication and interpersonal relationships. Furthermore, infants hospitalized in COVID-19 had a higher risk of experiencing delayed communication. No significant differences were observed in bonding quality. Lower infant gestational age and longer breastfeeding time were associated with better bonding quality in both groups. Psychosocial intervention is considered a valuable tool, capable of preventing maternal mental health difficulties and protecting bonding in premature infants and in highly complex healthcare settings. Nevertheless, it is essential to more actively address the socio-affective needs of newborns during their hospital stay to promote adequate development.
El desarrollo infantil temprano es un proceso de maduracion que depende críticamente de la interacción del infante consus cuidadores primarios. Por tal razón, en las unidades neonatales priorizan su proximidad. Durante el COVID19, se limitaron las horas de visitas de los progenitores, lo que redujo el tiempo que los cuidadores con sus bebés. Este estudio de seguimiento analiza y compara el nivel de depresión y estrés materno, el desarrollo infantil y la calidad del vínculo afectivo en díadas madrebebé prematuro hospitalizado al nacer, antes y durante la pandemia. De las 66 díadas participantes, 36 fueron admitidas antes del COVID199 y a 30 durante el COVID19. Se realizaron dos sesiones de vídeollamada, en las que las madres completaron los cuestionarios seleccionados. No se encontró ninguna diferencia significativa entre los niveles de depresión y estrés en las madres. Sin embargo, un bajo peso al nacer se asoció con mayores dificultades en la comunicación y las relaciones interpersonales en los niños. Además, los infantes hospitalizados durante el COVID19 presentaron mayor riesgo de experimentar retrasos en la comunicación. No se observaron diferencias significativas en la calidad del vínculo afectivo. Una menor edad gestacional del infante y mayor tiempo de lactancia materna se asociaron con una mejor calidad del vínculo afectivo en ambos grupos. Se considera la intervención psicosocial como una herramienta de valor, capaz de prevenir dificultades en la salud mental materna y de proteger el vínculo afectivo en infantes nacidos prematuramente y en entornos sanitarios altamente complejos. Sin embargo, es esencial abordarmás activamente las necesidades socioafectivas de los recién nacidos durante su estadía en el hospital para promover un desarrollo adecuado.
Asunto(s)
COVID-19 , Desarrollo Infantil , Recien Nacido Prematuro , Relaciones Madre-Hijo , Madres , Apego a Objetos , Estrés Psicológico , Humanos , COVID-19/psicología , Femenino , Recién Nacido , Relaciones Madre-Hijo/psicología , Madres/psicología , Adulto , Chile , Masculino , Depresión , SARS-CoV-2 , Hospitalización , Estudios de Seguimiento , LactanteRESUMEN
BACKGROUND: Greater patient-caregiver concordance for preferred place of death can increase the chances of patients dying at their preferred place, thus improving quality of life at end-of-life (EOL). We aimed to assess changes in and predictors of patient-caregiver concordance in preference for home death at EOL during the last 3 years of life of patients with advanced cancer. METHODS: We used data from the Cost of Medical Care of Patients with Advanced Serious Illness in Singapore (COMPASS) cohort study of patients with stage IV solid cancer. We interviewed patients and their caregivers every 4 months to assess their preference for home death (for patient), and patient (symptom burden, inpatient usage, financial difficulties) and caregiver (psychosocial distress, spiritual wellbeing, competency and perceived lack of family support) characteristics. We used data from patients' last 3 years of life. We used multivariable multinomial logistic regressions to predict dyad concordance for preference for home death. RESULTS: A total of 227 patient-caregiver dyads were analyzed. More than half of the patient-caregiver dyads observations were concordant in their preference for home death (54%). Concordance for home death declined closer to death (from 68% to 44%). Concordant dyads who preferred home death were less likely to include older patients [relative risk ratio, 0.97; P=0.03]. Dyads who preferred a non-home death (hospital, hospice, nursing home, unsure or others) were more likely to include patients with greater symptom burden (1.08; P=0.007) and with spousal caregivers (2.59; P=0.050), and less likely to include caregivers with greater psychosocial distress (0.90; P=0.003) and higher spiritual wellbeing (0.92; P=0.007). CONCLUSIONS: This study provides evidence of the dynamic changes in preference for home death among patient-caregiver dyads during last 3 years of patients' life. Understanding the EOL needs of older patients, optimizing home-based symptom control and better caregiver support are recommended to increase likelihood of dyad concordance for home death.