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Muddling through
Title
Muddling through: how young caregivers manage changing complexities.
Creator
Kain, Carole A., Christine E. Lynn College of Nursing
Abstract/Description
In the United States, an estimated 1.4 million children and adolescents, age 18 and under, provide daily unpaid physical, emotional and supportive care to a chronically ill or disabled family member (NAC & UHF). While the phenomenon of caregiving performed by adult children and spouses has been extensively explored by nursing, little is known about how Young Adolescent Caregivers manage being a caregiver while they attend school and mature socially as an adolescent. The purpose of this...
Show moreIn the United States, an estimated 1.4 million children and adolescents, age 18 and under, provide daily unpaid physical, emotional and supportive care to a chronically ill or disabled family member (NAC & UHF). While the phenomenon of caregiving performed by adult children and spouses has been extensively explored by nursing, little is known about how Young Adolescent Caregivers manage being a caregiver while they attend school and mature socially as an adolescent. The purpose of this Grounded Theory study was to identify and describe the basic social psychological problem shared by young adolescent caregivers girls, (N=9), aged 11-14, and the basic social processes used to manage the shared problem. Using the constant comparative method of data analysis, from audio taped and transcribed, semi-structured interviews were reviewed. The Basic Social Psychological Process (BSPP) identified was Managing Complexities. Muddling Through (BSP) was the process identified through constant comparison of the data to create categories. The phases of Muddling Through are: Becoming a Caregiver, Choosing Family, Creating Structure and Maintaining Balance. Young adolescents experienced becoming a caregiver through three paths: Embracing the Challenge, Sharing the Load and Being Assigned. Awareness of the consequences of being a Young Adolescent Caregiver and strategies used by Young Adolescent Caregivers to manage their changing complexities has implications for nursing interventions. Nurses in a variety of settings that treat persons with chronic illnesses can modify their practice to make significant supportive interventions with these largely invisible caregivers. Implications for policy change, nursing education and practice and future research are explored.
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Date Issued
2009
PURL
http://purl.flvc.org/FAU/227982
Subject Headings
Developmental psychology, Child caregivers, Children of parents with disabilities
Format
Document (PDF)
THE LIVED EXPERIENCE OF PARENTS OF CHILDREN WITH SPECIAL HEALTHCARE NEEDS ON PUBLIC AND PRIVATE INSURANCE: A PHENOMENOLOGICAL STUDY
Title
THE LIVED EXPERIENCE OF PARENTS OF CHILDREN WITH SPECIAL HEALTHCARE NEEDS ON PUBLIC AND PRIVATE INSURANCE: A PHENOMENOLOGICAL STUDY.
Creator
Reaves, Régine Placide, Chiang-Hanisko, Lenny, Florida Atlantic University, Christine E. Lynn College of Nursing, Christine E. Lynn College of Nursing
Abstract/Description
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...
Show moreDue 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. The purpose of this study was to understand the experiences of parents of CSHCN enrolled in public and private insurance with or without a nurse care coordinator assigned. A phenomenological approach was used. One-to-one semi-structured interviews were conducted with 16 participants. Colaizzi’s (1978) eight steps of data analysis was the selected methodological interpretation. Five themes emerged from this study: Struggle with Self-Preservation, Abandonment and Isolation, Self-Reliance and Advocate, Interdependence, and Lifeline. These study findings highlighted the major differences with parents navigating their child’s health insurance. These differences were dependent on the type of insurance and sources of support available. The experience of parents with a nurse care coordinator differed from parents without a nurse. Parents of CSHCN enrolled in public insurance with a nurse care coordinator considered the nurse to be a primary source of support. These nurses were instrumental in solving problems with the public health plan. On the contrary, parents with CSHCN enrolled in private insurance without a nurse care coordinator carried this additional burden. There were also noticeable differences in parents’ satisfaction with the adequacy and cost of their child’s health insurance. Parents of CSHCN enrolled in private insurance voiced dissatisfaction with higher costs associated with their child’s plan. Meanwhile, parents of CSHCN enrolled in Medicaid expressed that out-of-pocket expenses were covered. Results from this study can be used to make policy changes by insurance companies. Incorporating nursing care coordination not only results in healthcare savings for the health plan but improved health outcomes for its members as well.
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Date Issued
2020
PURL
http://purl.flvc.org/fau/fd/FA00013582
Subject Headings
Health insurance, Phenomenology--Research, Parents of children with disabilities
Format
Document (PDF)
The Effects of an Audio Coaching Intervention on Parents' Interactions with Their Children with Autism
Title
The Effects of an Audio Coaching Intervention on Parents' Interactions with Their Children with Autism.
Creator
Oliver, Patricia, Brady, Michael P., Florida Atlantic University
Abstract/Description
Children with autism may present delays in the development of social, communicative and cognitive skills. The behavioral features and patterns of development exhibited across domains can be very distinctive (Volkmar, 1999). This diversity in the expression of autism is what presents the greatest challenge for professionals and parents looking for the most appropriate and effective intervention for this population. Audio coaching intervention is one technology that has been used for over 50...
Show moreChildren with autism may present delays in the development of social, communicative and cognitive skills. The behavioral features and patterns of development exhibited across domains can be very distinctive (Volkmar, 1999). This diversity in the expression of autism is what presents the greatest challenge for professionals and parents looking for the most appropriate and effective intervention for this population. Audio coaching intervention is one technology that has been used for over 50 years to train psychologists, medical interns, pre-service teachers, and parents of children with behavioral challenges (Baum, 1976; Crimmins, Bradlyn, St. Lawrence, & Kelly, 1984; Giebelhaus, 1994; Goodman, Brady, Duffy, & Scott, in press; Hunt, 1980; Kahan, 2002; Korner & Brown, 1952; Lindell, 2001; Werba, Eyberg, Boggs, & Algina, 2006). The intervention consists of a trainee receiving immediate feedback from a coach via a remote radio. However, the application of this technology has never been explored specifically for training parents of children with autism. The present study was designed to examine experimentally the effectiveness of the audio coaching intervention on parents' interactions with their children with autism. Three mothers and their children with autism participated in the study. The mothers received immediate feedback from a coach on prompts designed specifically for their children. Results showed that the audio coaching intervention was an effective medium to teach the mothers how to deliver effective prompts and praise to their children. Results of the intervention also generalized to tasks on which the mothers had never been trained, and maintained well after the coaching was withdrawn. All three children showed an increase in their engagement and completion of independent tasks and routines in their homes after their mothers increased their use of more effective prompts and praise.
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Date Issued
2008
PURL
http://purl.flvc.org/fau/fd/FA00000685
Subject Headings
Autism in children, Autistic children--Family relationships, Children with disabilities, Parents of autistic children, Language acquisition--Parent participation
Format
Document (PDF)
Challenges faced by parents caring for their child after traumatic brain injury
Title
Challenges faced by parents caring for their child after traumatic brain injury.
Creator
Greif, Shelley J., Liehr, Patricia, Florida Atlantic University, Christine E. Lynn College of Nursing
Abstract/Description
When children have a moderate to severe traumatic brain injury (TBI), they are treated in a continuum of care that includes triage and emergency care, hospitalization, rehabilitation and outpatient therapy. Physical and cognitive recovery from brain injury may take several years. Children’s recovery varies, depending on numerous factors including pre-injury conditions and injury severity. While children and families are eager to return home to familiar activities, there are often significant...
Show moreWhen children have a moderate to severe traumatic brain injury (TBI), they are treated in a continuum of care that includes triage and emergency care, hospitalization, rehabilitation and outpatient therapy. Physical and cognitive recovery from brain injury may take several years. Children’s recovery varies, depending on numerous factors including pre-injury conditions and injury severity. While children and families are eager to return home to familiar activities, there are often significant physical, cognitive, behavioral and emotional changes that challenge families. Successful community reintegration depends on the ability of the family to understand and support the child, dealing with and responding effectively to those challenges. The purpose of this study is to understand how parents manage the care and community reintegration of their child who has experienced a TBI over time. This study utilized a mixed methods approach exploring the dimensions of the health challenge faced by parents caring for a child after a TBI, critical turning points as they face health challenges, and approaches for movement toward resolving health challenges. Story theory and story inquiry method were used to gather stories from 10 parents of children who experienced moderate to severe traumatic brain injury between the ages of 12 and 18, and between 2 and 5 years ago. Parents’ perceptions of their child’s quality of life and their ability to manage their child’s health challenge were explored using the Pediatric Quality of Life Inventory and Family Management Measure. Health challenges identified were: living with overwhelming personal upheaval, navigating the unknown, and struggling with how to support independence/dependence. Turning points were chronological or epiphanies. Approaches for movement toward resolving were continuously re-creating a new normal, being fully engaged in meeting the needs of one’s child, and embracing caring relationships to construct the new normal. Qualitative and quantitative data were analyzed to synthesize the findings. Results include a sense of ease in managing the health condition of the child associated with continuously creating a new normal. Healthcare providers can support and strengthen family management of children after TBI by understanding the health challenge, critical turning points and how parents move toward resolving.
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Date Issued
2014
PURL
http://purl.flvc.org/fau/fd/FA00004199
Subject Headings
Brain -- Wounds and injuries, Brain damage -- Patients -- Rehabilitation, Brain damage -- Psychological aspects, Brain damaged children -- Family relationships, Brain damaged children -- Rehabilitation, Parents of children with disabilities
Format
Document (PDF)