Child and caregiver experiences and perceptions of asthma self-management.
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ABSTRACT:
SUBMITTER: Kelada L
PROVIDER: S-EPMC8429661 | biostudies-literature |
REPOSITORIES: biostudies-literature
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Project description:BackgroundTeens often have inadequate asthma self-management and control. However, little is known of their perceptions of or rationales for self-management behaviors.ObjectivesTo explore how teens self-manage asthma, including experiences, perceptions, responses to and reporting of symptoms.MethodsA case-based, qualitative-descriptive design was used. Data were collected from minority and non-minority teens with controlled and uncontrolled asthma and their respective parents (N = 28). There were four data-collection points, including: (1) a primary teen interview; (2) parent interview; (3) 2-week self-management voice-diary; and (4) follow-up teen interview, incorporating symptom-response card-sorting to map symptoms and associated self-management responses. Seventy data sources were included in the analysis.ResultsTeens thought of their asthma symptoms as normal or unusual relative to their personal baseline symptom pattern; Those with uncontrolled asthma normalized higher levels of asthma symptoms than their counterparts with controlled asthma. Second, teens' decisions to treat symptoms of asthma with rescue medication were based on perceived benefits, burdens and accessibility of treatment balanced against perceived normalcy of symptoms. Teens with uncontrolled asthma had substantially higher treatment thresholds and delayed responses to symptoms compared to controlled peers. Third, teens never reported perceived normal symptoms of asthma to parents or providers, who were thus only aware of unusual or visible/audible symptoms.ConclusionsTeen's perceptions of symptoms and understanding of what is normal is the basis for self-management decisions. Improving self-management will likely entail modifying perceptions of symptoms and benefits/burdens of treatment to achieve healthier self-management patterns.
| S-EPMC5182183 | biostudies-literature
Project description:BackgroundHuman capital (the knowledge, skills, and health that accumulate over life) can be optimized by investments in early childhood to promote cognitive and language development. Parents and caregivers play a crucial role in the promotion and support of cognitive development in their children. Thus, understanding caregiver perceptions of a child's capabilities and attributes, including intelligence, may enhance investments early in life. To explore this question, we asked caregivers to rank their child's intelligence in comparison with other children in the community, and compared this ranking with children's scores on an assessment of developmental abilities across multiple domains.MethodsOur study examined cross-sectional data of 3361 children aged 16-42 months in rural Madagascar. Child intelligence, as perceived by their caregiver, was captured using a ladder ranking scale based on the MacArthur Scale for Subjective Social Status. Children's developmental abilities were assessed using scores from the Ages and Stages Questionnaire: Inventory (ASQ-I), which measures cognitive, language, and socio-emotional development. Ranked percentiles of the ASQ-I were generated within communities and across the whole sample. We created categories of under-estimation, matched, and over-estimation by taking the differences in rankings between caregiver-perceived child intelligence and ASQ-I. Child nutritional status, caregiver belief of their influence on child intelligence, and sociodemographic factors were examined as potential correlates of discordance between the measures using multinomial logistic regressions.ResultsWe found caregiver perceptions of intelligence in Madagascar did not align consistently with the ASQ-I, with approximately 8% of caregivers under-estimating and almost 50% over-estimating their children's developmental abilities. Child nutritional status, caregiver belief of their influence on child intelligence, caregiver education, and wealth were associated with under- or over-estimation of children's developmental abilities.ConclusionsOur findings suggest parents may not always have an accurate perception of their child's intelligence or abilities compared with other children. The results are consistent with the limited literature on parental perceptions of child nutrition, which documents a discordance between caregiver perceptions and objective measures. Further research is needed to understand the common cues caregivers that use to identify child development milestones and how these may differ from researcher-observed measures in low-income settings.Trial registrationCurrent Controlled Trials ISRCTN14393738 . Registered June 23, 2015.
| S-EPMC6739938 | biostudies-literature
Project description:Background:Many children in low and middle income countries (LMIC) are exposed to trauma. Contact with public services are a potential influence on parent-child reactions and coping post-trauma. Little is known about how caregivers perceive these interactions. Methods:The aim of this study was to explore caregivers' experiences of accessing and interacting with public services post-trauma and perceptions of needed improvements to public services in a LMIC context. Qualitative interviews were conducted with 20 female caregivers from a high-risk settlement in South Africa after child trauma exposure. Results:Three themes and seven sub-themes were identified regarding caregivers' perceptions of interactions with public services post-trauma. The key themes identified related to (1) communication and exchanges with law enforcement, (2) consequences of an under-resourced justice system and (3) importance of communication and empathy in the healthcare system. Interactions with police were often positive. However, caregivers explained that police-family communication post-trauma could be improved and may help to lessen caregiver anxiety and concerns for the child's safety post-trauma. Caregivers perceived the judicial system to be under-resourced as contact with the judicial system was often protracted and caused child anxiety and distress. Medical treatment was reportedly rushed, with extensive waiting times and little information provided to caregivers regarding the child's injuries or treatment. Some medical staff were perceived as unsympathetic during the child's treatment which was found to exacerbate caregiver and child distress post-trauma. Conclusions:This study provides insight into caregiver experiences of accessing public services following child trauma exposure in a high-risk LMIC context. Public services were perceived as oversubscribed and under-resourced and negative interactions often influenced caregiver responses and appraisals of child safety. Given the impact of poor interactions with public services on families post-trauma, additional research is needed to investigate feasible improvements to public services in LMIC.
| S-EPMC5894141 | biostudies-literature
Project description:AimsTo identify and synthesize the available evidence of youths with asthma and their experience of self-management education.DesignSystematic literature review of qualitative studies with meta-synthesis of findings.Data sourcesWe searched five databases, CINAHL Complete, Embase, MEDLINE (EBSCO) PsycINFO, ASSIA and the Global Index Medicus (formerly the WHOLIS). Initial search in September 2019 and updated in July 2020 and July 2022.Review methodsThe systematic review was conducted in accordance with the JBI methodology for systematic reviews of qualitative evidence. Qualitative data were extracted, meta-summarized and then meta-synthesized.ResultsEighteen studies were identified for inclusion in this review and three themes were identified: The theory and practice gap, contemporary health-seeking preferences and the psychosocial impacts of living with asthma.ConclusionThe needs of youths with asthma are specific and must be measurable against the change in asthma outcomes for this group. They have unmet self-management educational needs that stakeholders, involved in their care and support, should address. Education and practice policy should focus on youth-centric approaches. Through meaningful engagement with youths, stakeholders can identify their support needs, requirements and preferences to successfully underpin the theory and practice of self-management education.ImpactThis review synthesized evidence of youths with asthma and their experiences of self-management education, highlighting their specific self-management information needs. The findings highlight several implications for healthcare professionals in education, practice and research. This age profile is under-explored and further research into this population would work towards filling the theory and practice gap and highlighting the identified psychosocial issues faced by this group.
| S-EPMC9827903 | biostudies-literature
Project description:OBJECTIVE:Low-income caregivers of young children with high-risk asthma experience social stressors and illness-related demands that may impede effective home asthma management. Knowledge of the caregiving experience in the context of poverty is limited. METHODS:Convenience sampling methods were used to recruit low-income caregivers of children aged 7-12 years, who are frequently in the Emergency Room (ED) for uncontrolled asthma. Thirteen caregivers participated in focus groups that were designed to elicit reflections on asthma home and community management from the caregiver perspective. A grounded theory approach was used in the open coding of transcript data from three focus groups, as well as to revise and reorganize emerging themes and sub-themes. RESULTS:Participants (Mean age = 33.9 years) were predominantly the biological mother (92.3%), single (84.6%), and impoverished (69.2% reported annual household income ? $30,000). Their children (Mean age = 7.8 years) were African-American (100%), enrolled in Medicaid (92.3%), averaged 1.38 (SD = 0.7) ED visits over the prior 3 months, resided in homes with at least one smoker (61.5%), and nearly all (84.6%) experienced activity limitations due to asthma. Five themes emerged in the analysis: intensive caregiving role, complex and shared asthma management responsibility, parental beliefs and structural barriers to guideline-based care, lack of control over environmental triggers, and parent advocacy to improve child asthma care and outcomes. CONCLUSIONS:Caregivers managing a child with high-risk asthma in the context of poverty indicate the need for ongoing asthma education, increased sensitivity to the complexity of home asthma management, and family-centered interventions that enhance communication and collaboration between caregivers and providers.
| S-EPMC5241250 | biostudies-literature
Project description:The aim of this review was to conduct a meta-synthesis of the experiences and perceptions of self-management of type 1 diabetes of children and young people living with type 1 diabetes (CYPDs). Six databases were systematically searched for studies with qualitative findings relevant to CYPDs' (aged 8-18 years) experiences of self-management. A thematic synthesis approach was used to combine articles and identify analytical themes. Forty articles met the inclusion criteria. Two analytical themes important to CYPDs' experiences and perceptions of self-management were identified: (1) negotiating independence and (2) feeling in control. The synthesis contributes to knowledge on contextual factors underpinning self-management and what facilitates or impedes transition towards autonomous self-management for CYPDs.
| S-EPMC6751535 | biostudies-literature
Project description:ObjectiveWe conducted a large (N = 204) randomized, clinical trial to test the efficacy of parent-child interaction therapy (PCIT) on observed parenting, two key drivers of maladaptive parenting-self-regulation and social cognitions, and child behavior outcomes in a sample of child welfare-involved families.MethodParticipants were randomly assigned to standard PCIT (n = 120) or services-as-usual (SAU; n = 84). The sample was characterized by low household income, significant exposures to adverse childhood experiences, and substance abuse. Intention-to-treat analyses were conducted on multiply imputed data followed by secondary per-protocol analyses.ResultsSignificant PCIT effects emerged on (a) increased positive parenting, reduced negative parenting and disruptive child behavior (small-to-medium intention-to-treat effects and medium-to-large per-protocol effects); (b) gains in parent inhibitory control on the stop-signal task (small-to-medium effects); (c) gains in parent-reported emotion regulation and (d) positive, affirming self-perceptions (small-to-medium effects), relative to the SAU control group. PCIT's effects on gains in parent emotion regulation were mediated by reductions in observed negative parenting. No differences in rates of parent commands or child compliance were observed across conditions. Harsh child attributions moderated treatment impact on parenting skills acquisition. PCIT parents who held harsher attributions displayed greater gains in use of labeled praises and declines in negative talk/criticism with their child, than control group parents.ConclusionsThis randomized trial presents the first evidence that PCIT improves inhibitory control and emotion regulation in a child welfare parents and replicates other published trials documenting intervention gains in positive parenting and child behavior in child welfare families. (PsycInfo Database Record (c) 2024 APA, all rights reserved).
| S-EPMC10894622 | biostudies-literature
Project description:BACKGROUND:Asthma education (AE) is associated with reduced hospitalization and disability. We compared the effectiveness of an electronic AE program (eAEP) with a conventional face-to-face AE program (presence-based AEP; pAEP) for asthma knowledge (AK) with regard to self-management. METHODS:A randomized controlled pilot study was conducted in a pulmonary reha- bilitation clinic. AK was determined by means of the Asthma Knowledge Test (AKT). The change in AKT score within each group was calculated with a paired t-test. Group differences were estimated with adjusted linear regression models. RESULTS:In the intervention group (n = 41), the AKT score increased from 41.57 (standard deviation 5.63) at baseline to 45.82 (3.84) after completion of the eAEP (p < 0.001), and again to 47.20 (3.78) after completion of the pAEP (p = 0.046). In the control group (n = 41), the score increased from 41.73 (4.74) at baseline to 45.72 (3.65) after completion of the pAEP (p < 0.001). There was no relevant differ- ence in knowledge gain between the eAEP and the pAEP group after completion of the corresponding educational sessions (p = 0.881). The AKT score was higher in the eAEP group after obligatory participation in pAEP than in the group that only completed the pAEP (p = 0.020). CONCLUSION:An internet-based AEP could help to reduce the knowledge deficits of a large proportion of patients with asthma.
| S-EPMC7054593 | biostudies-literature
Project description:The purpose of this study was to examine relationships among caregiver social support, caregiver depressive symptoms, medication adherence, and asthma control in a sample of low-income, urban, Black children aged 3-12 years with uncontrolled asthma and their caregivers. Using longitudinal data from a randomized controlled trial (RCT) assessing the efficacy of an environmental control educational intervention, we used generalized estimating equations and ordered logistic regression models to evaluate the relationship between caregiver social support (Medical Outcomes Study Social Support Survey), depressive symptoms (Center for Epidemiologic Studies Depression scale), and two child asthma outcomes: (a) medication adherence (Asthma Medication Ratio) and (b) asthma control. At baseline, 45.7% of the 208 children had very poorly controlled asthma. Nearly a third of caregivers (97% female) had clinically significant depressive symptoms at each data collection point. Social support was not associated with either asthma outcome nor did it moderate the relationship between depressive symptoms and child asthma outcomes. Higher caregiver depressive symptoms predicted decreased medication adherence (b=-0.003, SE 0.002). Moderate asthma at baseline (OR: 0.305, SE: 0.251), severe asthma at baseline (OR: 0.142, SE: 0.299), household income < $20,000 per year (OR: 0.505, SE: 0.333), and fall season (OR: 0.643, SE: 0.215) were associated with poorer asthma control. Attending to the social context of low-income, urban, Black children with asthma is critical to reduce asthma morbidity. Maternal depressive symptoms are modifiable and should be targeted in interventions to improve child asthma outcomes in this vulnerable population. The RCT was registered with ClinicalTrials.gov (NCT01981564) in October 2013.
| S-EPMC8153098 | biostudies-literature
Project description:Bowel cancer is the 3rd most common cancer in males and females. Most bowel cancers develop from precancerous polyps in the bowel. Colonoscopy can detect and remove these polyps, thereby reducing the risk of developing bowel cancer. However, colonoscopy is an invasive procedure with inherent risk, and can be both uncomfortable and embarrassing to undergo. The risks and numerous other barriers often mean colonoscopy, and cancer preventing polyp removal, is not performed.
The investigators aim to start the first in-human feasibility clinical investigation of a robotic magnetic colonoscope in 2021. The new device aims to reduce the discomfort and risk associated with colonoscopy. As part of the patient and end user involvement aspect of the project the investigators aim to perform a mixed methodology inductive type research project exploring experiences of colonoscopy for patient and endoscopists.
The study will follow an exploratory mixed methodology format with two parallel work-streams for patients and endoscopists. Each work-stream will consisting of a focus groups (1-2 for each patients and endoscopists), followed by 20 endoscopist and 30 patient in-depth interviews, then an online questionnaire. Each stage will be thematically analysed to form the semi-structured questions for the next stage. The target population will be endoscopists who perform colonoscopy and people who have undergone, or refused to undergo, a colonoscopy. Focus groups will be performed in groups of 6-10 participants, and both interview and focus groups will be performed via video/teleconferencing.
| 2366841 | ecrin-mdr-crc