Stress in Families With Medically Fragile Children

Ratliffe, Clark; Harrigan, Rosanne C.; Haley, Janice M.; Tse, Alice M.; Olson, Tom

doi:10.1080/01460860290042558

Cited by 82 publications

(63 citation statements)

References 24 publications

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“…However, for some of these parents, the illness of their child still occupied their minds twenty four hours a day. Other studies also found that the sense of never being off was the most frequently reported burden of parents of seriously chronically ill children (Ratcliffe et al, 2002) and that parents had real problems with the arduous day-to-day treatment of their child's illness (Ievers & Drotar, 1996). We discovered from our study that the sense of never being off-duty also included a mental burden for parents, including almost permanent worrying and having to make difficult choices in treatment which were a sign that their child was on the decline.…”

Section: The Mental Burden Of the Illnessmentioning

confidence: 99%

“…The only way to deal with this inner conflict was to try to separate themselves from their emotions during the painful tasks they had to perform for the good of their child's health. In a review study, Ratcliffe et al (2002) also found that parents' role conflict was a core theme for parents of children with other chronic illnesses. They described this as the parents being in an ongoing flux between being a parent and being a care provider.…”

Section: Parents Causing Pain To the Childmentioning

confidence: 99%

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The Main Problems of Parents of a Child With Epidermolysis Bullosa

et al. 2008

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Epidermolysis Bullosa (EB) is a rare genetic blistering-skin disorder with varying degrees of severity, ranging from mild forms to severe forms, with chronic progression. The aim of this study was to identify and specify the problems of parents of a child with EB. Qualitative research methodology was used, comprising a series of semistructured interviews with eleven families. The key problems of parents were broken down into three themes, related to the child, the family, and the care providers. These themes comprised nine categories, including (1) the child being different, (2) the child suffering pain, (3) feelings of uncertainty, (4) restrictions on employment and leisure time, (5) difficulties in organization of care, (6) never being off-duty, (7) family problems, (8) ignorance and lack of skills of care providers, and (9) resistance to difficult care. Despite the great variance in clinical pictures of the different (sub)types of EB, the main problems parents experienced appear quite similar. However, the problems did appear to differ in extensiveness, intensity, and gravity.

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Section: The Mental Burden Of the Illnessmentioning

confidence: 99%

Section: Parents Causing Pain To the Childmentioning

confidence: 99%

The Main Problems of Parents of a Child With Epidermolysis Bullosa

et al. 2008

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“…Mental health should also be measured as salient outcomes, because psychiatric issues are common in many CMC. 70 Because of the potent and pervasive impact of complex conditions on families and parental caregivers, including enhanced stress, 71 poor health, 72,73 marital discord, 74 and employment and financial consequences, 75 families should be actively involved in the research process and help inform the selection of important family-based outcomes. Examples of family-based outcomes include caregiver health and quality of life, family functioning and resiliency, the effects on siblings, and/or financial impact.…”

Section: Research Agendamentioning

confidence: 99%

Children With Medical Complexity: An Emerging Population for Clinical and Research Initiatives

et al. 2011

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Children with medical complexity (CMC) have medical fragility and intensive care needs that are not easily met by existing health care models. CMC may have a congenital or acquired multisystem disease, a severe neurologic condition with marked functional impairment, and/or technology dependence for activities of daily living. Although these children are at risk of poor health and family outcomes, there are few well-characterized clinical initiatives and research efforts devoted to improving their care. In this article, we present a definitional framework of CMC that consists of substantial family-identified service needs, characteristic chronic and severe conditions, functional limitations, and high health care use. We explore the diversity of existing care models and apply the principles of the chronic care model to address the clinical needs of CMC. Finally, we suggest a research agenda that uses a uniform definition to accurately describe the population and to evaluate outcomes from the perspectives of the child, the family, and the broader health care system. Pediatrics 2011;127:529-538Since 1998, the Maternal and Child Health Bureau has defined children with special health care needs (CSHCN) as those children who have or are at increased risk of a chronic physical, developmental, behavioral, or emotional condition and require health care and related services of a type or amount beyond that required by children generally. 1 An extensive process informed the development of an intentionally broad and inclusive CSHCN definition for the definition to be meaningful for broad program planning and development. Although 13% to 18% of children are considered to have special needs (excluding those who are "at risk" for special needs), 2 there is considerable variation in medical complexity, functional limitations, and resource need among CSHCN. 3,4 One important subgroup is the children who are the most medically fragile and have the most intensive health care needs. Examples vary and include children who have a congenital or acquired multisystem disease, a severe neurologic condition with marked functional impairment, or patients with cancer/cancer survivors with ongoing disability in multiple areas. Terms traditionally used to describe this subgroup include a combination of children with 1 or more of the following terms: complex, chronic, medical, conditions, and/or needs (eg, complex chronic conditions [CCCs], 5 complex medical needs, 6 complex medical conditions, 7 and complex health conditions 8 ), as well as medically complex children. 9,10 In this article, we use the term "children with medical complexity" (CMC). The rationales are that it uses "person-first" terminology and refers to the extra time, expertise, and resources necessary to achieve optimal health outcomes for these children. AUTHORS:

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“…25,34,35 To better assist these families, practices might consider alterations in the how, where, and who of care delivery to maximize convenience, effectiveness, and family-centeredness. The specific examples that follow include potential facilitators of action (home visitation and care coordination programs).…”

Section: Structure Of Care Deliverymentioning

confidence: 99%

Determinants of Health and Pediatric Primary Care Practices

Beck

Tschudy²,

Coker

et al. 2016

Pediatrics

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More than 20% of children nationally live in poverty. Pediatric primary care practices are critical points-of-contact for these patients and their families. Practices must consider risks that are rooted in poverty as they determine how to best deliver family-centered care and move toward action on the social determinants of health. The Practice-Level Care Delivery Subgroup of the Academic Pediatric Association's Task Force on Poverty has developed a roadmap for pediatric providers and practices to use as they adopt clinical practice redesign strategies aimed at mitigating poverty's negative impact on child health and well-being. The present article describes how care structures and processes can be altered in ways that align with the needs of families living in poverty. Attention is paid to both facilitators of and barriers to successful redesign strategies. We also illustrate how such a roadmap can be adapted by practices depending on the degree of patient need and the availability of practice resources devoted to intervening on the social determinants of health. In addition, ways in which practices can advocate for families in their communities and nationally are identified. Finally, given the relative dearth of evidence for many poverty-focused interventions in primary care, areas that would benefit from more in-depth study are considered. Such a focus is especially relevant as practices consider how they can best help families mitigate the impact of povertyrelated risks in ways that promote long-term health and well-being for children.abstract

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Stress in Families With Medically Fragile Children

Cited by 82 publications

References 24 publications

The Main Problems of Parents of a Child With Epidermolysis Bullosa

The Main Problems of Parents of a Child With Epidermolysis Bullosa

Children With Medical Complexity: An Emerging Population for Clinical and Research Initiatives

Determinants of Health and Pediatric Primary Care Practices

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