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Examining the Relationships Among Child and Caregiver Asthma-Related Illness Representations, Medication Adherence, and Asthma Control in Black and Latino Children

Introduction: The Common Sense Model (CSM) posits that Illness Representations (IRs) are a patient's beliefs and expectations about an illness and that IRs guide health behavior (Leventhal, Brissette, & Leventhal, 2003). This study aimed to examine possible links between youth asthma IRs and disease-related outcomes ( controller medication adherence, asthma control, and lung function) in a sample of black and Latino youth with asthma.

Mon, 01/16/2023 - 13:16

Experiences of Pediatric Parenting Stress and Family Support for Caregivers of Children with Special Health Care Needs or Developmental Disabilities

Serving children with special health care needs (SHCN) or developmental disabilities (DD) and their families is an important public health issue (Healthy People, 2020). The prevalence of children with special health care needs or developmental disabilities is significant and increasing (Boyle et al., 2011). Caregivers of children with SHCN or DD and their families demand clinical and research attention given the potential range of health and well-being outcomes that are associated with their children’s developmental or medical complexity.

Mon, 01/16/2023 - 12:54

Native Hawaiian Caregivers' Cultural Perspectives of Pediatric Asthma Management

Asthma remains the leading cause of chronic respiratory illness among Native Hawaiian children 0 to 17 years in Hawai'i. The National Asthma Education and Prevention Program (NAEPP) established asthma management guidelines which includes medical assessment and monitoring, education in partnership with the caregiver, control of environmental triggers, and medication adherence (National Asthma Education Prevention Program [NAEPP], 2007). However, these guidelines do not consider the worldview, health beliefs, and cultural practices of caregiver, child, and family.

Mon, 01/16/2023 - 09:55

The Lived Experience of Parents of Children with Special Healthcare Needs on Public and Private Insurance: A Phenomenological Study

Due to recent advances in medical technology, the number of children with special healthcare needs (CSHCN) is steadily growing in the United States. CSHCN comprise more than 40% of overall healthcare costs nationwide, even though this group is only comprised of 16% of the U.S. child population. There are significant differences between private and public health plans in terms of cost, adequacy, and parent satisfaction. As an added benefit, some public and private health insurance plans offer nursing care coordination (or nursing case management) services.

Tue, 01/10/2023 - 16:56

Community-based participatory approaches to neurogenetic syndrome research

Individuals with neurogenetic syndromes comprise a large subset of the population of people with intellectual disability. Members of neurogenetic syndrome communities, including self-advocates, caregivers, family members, and service providers, can be valuable partners in translational research and its application to intervention and advocacy.

Tue, 01/10/2023 - 16:16

Early Feeding Experiences of Families Whose Children Were Born with Cleft Lip andor Palate: A Rural Perspective

An initial problem frequently found in children born with cleft palate is difficulty feeding. This problem can be magnified in rural areas where healthcare resources are limited. A 29-item questionnaire was developed and administered to 24 families whose children were born with a cleft palate. Many parents experienced difficulties in both instruction and in feeding their children. It was necessary for them to seek information and assistance from different sources.

Thu, 01/05/2023 - 15:30

Augmented naturalistic developmental behavioral intervention for toddlers with autism spectrum disorder: A community pilot study

In the United States, all families with children under the age of 3 years with disabilities or delays in development are eligible to receive public Early Intervention (EI) services. Many researchers are investigating Naturalistic Developmental Behavioral Interventions (NDBI), which have shown positive outcomes for young children with ASD. However, NDBIs have been mostly developed and implemented in university laboratories, and their effectiveness when delivered in community settings is not well understood.

Wed, 12/21/2022 - 10:18

Family Psychoeducation Program to Support Caregivers and Children/Adolescents with Mood and Anxiety Disorders

Anxiety and mood disorders represent two of the most common disorders experienced by children/adolescents. Untreated anxiety or mood disorders can put children and adolescents at risk for other conditions, like disruptive behavior and substance use disorders, that can have far-reaching consequences even after the mood or anxiety disorder is treated. For caregivers, providing care or raising a child or adolescent with a diagnosed mood or anxiety disorder can impact caregivers in various ways.

Wed, 12/21/2022 - 10:08

Perceptions of Unmet Cultural Needs: Punjabi Families' Challenge to Maintain Culture and Identity within Pediatric Medical Settings

The hospitalization of a child is a very tumultuous time for the caregiver. Going through the entire process of hospitalization from being admitted, to the diagnostic process, can be overwhelming to understand for caregivers. For caregivers who are not familiar with the American medical system, this process is even more unsettling and stressful. The purpose of this study was to examine culturally competent practices within the pediatric medical setting from the perspective of Punjabi families.

Tue, 12/20/2022 - 09:17

Formal and informal care work

Care work is an umbrella term for many services and activities, both formal and informal, that provide help and advice, healing and nursing, education and training. Such work on and with people, the productivity of which cannot readily be increased, could in future be a significant core area for all human work in post-growth societies.

Fri, 09/02/2022 - 11:01

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