What we know (and do not know) about raising children with complex continuing care needs
Humans; patient care team; Home Nursing; Parents; disabled children; Health Services Needs and Demand; social support; Life Support Care; Pediatric Nursing; Child Care; Cost of Illness; Long-Term Care; Healthcare Disparities; Special
2008-03
Carnevale FA; Rehm RS; Kirk S; McKeever P
Journal Of Child Health Care
2008
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1177/1367493508088552" target="_blank" rel="noreferrer">10.1177/1367493508088552</a>
Parental encouragement, protection, and advocacy for Mexican American children with chronic conditions
2000
Rehm RS
Journal Of Pediatric Nursing
2000
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1053/jpdn.2000.5448" target="_blank" rel="noreferrer">10.1053/jpdn.2000.5448</a>
Creating a context of safety and achievement at school for children who are medically fragile/technology dependent
2002
Rehm RS
Advances In Nursing Science
2002
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1097/00012272-200203000-00008" target="_blank" rel="noreferrer">10.1097/00012272-200203000-00008</a>
The search for social safety and comfort in families raising children with complex chronic conditions
Child; Female; Humans; Male; United States; Adult; Interpersonal Relations; Social Adjustment; Family Nursing; Preschool; Adaptation; Psychological; Family/psychology; Parent caregivers; Chronic Disease/nursing/psychology; Developmental Disabilities/nursing/psychology; Leisure Activities
Social consequences of raising children who were medically fragile and developmentally delayed (MF/DD) were explored in an ethnographic study of 20 families with school-age children. The overarching theme was the families' search for safety and comfort in social situations. Major categories comprising this theme included the need to anticipate and plan for the child's care; overcoming environmental, child-related, and attitudinal barriers; and finding social activities that were comfortable for all members of the family. When this search was successful, families could relax, and all members could participate in a variety of social encounters and activities; but when safety and comfort could not be achieved, families were likely to limit social activities or split the family so that the child who was MF/DD could be cared for while other family members participated in social events.
2005
Rehm RS; Bradley JF
Journal Of Family Nursing
2005
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1177/1074840704272956" target="_blank" rel="noreferrer">10.1177/1074840704272956</a>
Normalization in families raising a child who is medically fragile/technology dependent and developmentally delayed
U.S. Gov't; Adaptation; PedPal Lit; Extramural Research Support; N.I.H.; Non-U.S. Gov't Research Support; but it has not been examined in families whose children have both complex physical and developmental disabilities. Developmental delays compounded the effects of the children's physical chronic conditions; P.H.S. Schools; parents recognized normal and positive aspects of their lives while acknowledging the profound challenges that their families faced. Parents concluded that it was possible to have a good life that was not necessarily normal by usual standards .; Preschool Chronic Disease Comparative Study Cost of IllnessDevelopmental DisabilitiesDisabled Children Family/psychology Humans Qualitative Research Research Support; Psychological Caregivers/psychology ChildChild Rearing Child; severely affecting how families organized and managed their daily lives; with the result that families did not fit currently established attributes of normalization. Instead
2005
Rehm RS; Bradley JF
Qualitative Health Research
2005
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1177/1049732305276754" target="_blank" rel="noreferrer">10.1177/1049732305276754</a>
Social interactions at school for children who are medically fragile and developmentally delayed
2006
Rehm RS; Bradley JF
Journal Of Pediatric Nursing
2006
Article information provided for research and reference use only. PedPalASCNET does not hold any rights over the resource listed here. All rights are retained by the journal listed under publisher and/or the creator(s).
Journal Article
<a href="http://doi.org/10.1016/j.pedn.2006.02.003" target="_blank" rel="noreferrer">10.1016/j.pedn.2006.02.003</a>