nursing's contribution to research about parenting children with complex chronic conditions:...

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Nursing’s contribution to research about parentingchildren with complex chronic conditions:

An integrative review, 2002 to 2012Roberta S. Rehm, PhD, RN, FAAN*

Department of Family Health Care Nursing, University of California at San Francisco, San Francisco, CA

a r t i c l e i n f o

Article history:Received 9 November 2012Revised 18 February 2013Accepted 7 March 2013

Keywords:Children with special healthcare needsComplex chronic conditionsMedically fragileTechnology dependentParentingChildAdolescent

* Corresponding author: Dr. Roberta S. RehmN411Y, 2 Koret Way, San Francisco, CA 9414

E-mail address: [email protected] (R

0029-6554/$ - see front matter � 2013 Elsevihttp://dx.doi.org/10.1016/j.outlook.2013.03.00

a b s t r a c t

Children with complex chronic conditions (CCC) need extensive, costly care,usually provided at home by parents. These children often rely on technology tosurvive or avoid complications. Children with CCC receive nursing care inhospital, community, and home settings. An integrative review of 22 nursingstudies, from 2002 to 2012, of parenting for children with CCC was conducted tosynthesize nursing research addressing parenting a child with a CCC andidentify promising areas for future inquiry and development of supportiveinterventions and policies. Criteria for sampling in these studies were reviewed,and an updated definition for children with CCC is offered to replace anoutdated definition of “medically fragile” children. Findings include the exten-sive impacts of providing complex care at home, including the tension betweenthe difficulties and recognition of the rewards of providing that care. Disruptionsoccurred in emotional, role development, social, and moral realms.

Cite this article: Rehm, R. S. (2013, OCTOBER). Nursing’s contribution to research about parenting children

with complex chronic conditions: An integrative review, 2002 to 2012. Nursing Outlook, 61(5), 266-290.

http://dx.doi.org/10.1016/j.outlook.2013.03.008.

In the United States, the Maternal and Child HealthBureau (MCHB) reported that 11.1 million children(15.1%) met criteria for their definition of children withspecial health care needs (CSHCN), including having orbeing at risk for a chronic physical, developmental,behavioral, or emotional condition and the need forhealth and related services beyond that of children ingeneral (Child and Adolescent Health MeasurementInitiative [CAHMI], 2012). The MCHB, which conductsperiodic national surveys of parents of CSHCN, usesthis non-categorical approach when classifying chil-dren’s chronic conditions in an attempt to be inclusiveof all children who may need extra services and toemphasize the functional limitations or outcomes ofchronic conditions more than any specific diagnosis

, Department of Family3-0606..S. Rehm).

er Inc. All rights reserved8

(Bethell et al., 2002; McPherson et al., 1998). Neverthe-less, nurses and other health care providers (HCPs)recognize that there is a subset of CSHCN whosechronic conditions are particularly complex or severe,placing extra demands on their families, professionalproviders, and communities (Bramlett, Reed, Bethell, &Blumberg, 2009; Mentro, 2003). Labeled as medicallyfragile, technology-dependent, medically complex, orhaving a complex chronic condition (CCC), this pop-ulation is growing because of improved survival ratesof preterm and sick infants and better hospital andhome care treatments and technologies for sick chil-dren with a variety of diagnoses (Cohen et al., 2011;Simon et al., 2010). In this article, the term childrenwith CCC is used. Childrenwith CCC require significant

Health Care Nursing, University of California at San Francisco,

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care on a daily basis, often usemedical technology, andare at high risk for complications.

Parents, particularly mothers, remain the primarycaregivers for CSHCN, including those with complexcare needs. These parents require supportive,informed professional nursing care to maintainoptimal health and quality of life for their childrenand themselves. Because of nursing’s explicitlyholistic and family-centered perspective, nurseresearchers often ask important questions andexamine data in ways that expand knowledge anddeepen findings developed by colleagues in otherdisciplines. Synthesizing nurse researchers’ recentcontributions to scholarship about parenting childrenwith CCC will allow identification of strengths andgaps in the literature, directions for future research,and evidence to support development of nursing careand national, state, and local policy. In addition, thedevelopment of a succinct definition of children withCCC that encompasses this diverse subgroup of chil-dren will facilitate nursing research and developmentof interventions and policies. Therefore, the purposesof this integrative review were (a) to identify andsynthesize nursing contributions to understandingparenting of children with CCC from 2002 to 2012 and(b) to propose a definition to succinctly characterizethe population of children with CCC.

Background

Children with CCC experience more limitations inactivities, require more costly health care andsupportive technology and services, and suffer excessmorbidity, including intellectual and developmentalchronic conditions, and mortality compared withchildren of typical health and development (Edwardset al., 2012; Houtrow, Okumura, Hilton, & Rehm,2011). Parents whose children had the most severeconditions and were providing care at home reportedthe highest levels of financial and employment prob-lems related to the child’s condition (Looman,O’Connor-Von, Fersjum, & Hildenbrand, 2009). The10% of children with the most severe chronic healthconditions accounted for nearly 70% of all Medicaidexpenditures for children qualifying for Social SecurityDisability support and 61% of total spending for chil-dren with serious chronic conditions (Kuhlthau, Perrin,Ettner, McLaughlin, & Gortmaker, 1998; Newacheck &Kim, 2005). Children who were dependent on tech-nology were at increased risk for severe acute illnessand were more than three times as likely to require anunexpected intensive care unit (ICU) admission thanother children (Dosa, Boeing, & Kanter, 2001). Bramlettet al. (2009) analyzed schemas for classifying theseverity of health conditions, care needs, and familyimpact using existing nationally representative datasets. They concluded that there was an approximatelylinear relationship of complexity to the number of

qualifying criteria for the CSHCN Screener tool, whichasks about ongoing limitations in age-appropriateactivities; ongoing need for prescription medications;ongoing need for specialized therapies; ongoing needfor more medical, mental health, or educationalservices than age peers; and the presence of ongoingbehavioral, emotional, or developmental conditionsrequiring treatment or counseling. Children with fouror five of these criteria had poorer health and requiredmore care and services, and their families reportedhigher impact than that reported by the families ofchildren who met fewer criteria. The latest CSHCNsurvey identified that 1.5 million children (14% ofCSHCN) met four or five of the criteria in 2009/2010(CAHMI, 2012).

Previous reviews have included nursing researchand studies from multiple disciplines. Harrigan,Ratliffe, Patrinos, and Tse (2002) conducted an inte-grative review of 14 studies about medically fragilechildren. They described themes of family stress,including financial burdens, the need for respite care,stressful relationships between parents and caregiversproviding home care services, and a need for individ-ualized and coordinated care. They advocated for casemanagement and extended care facilities in thecommunity that could potentially decrease familystress and improve outcomes for children in a cost-effective manner. Ratliffe, Harrigan, Haley, Tse, andOlson (2002) reviewed 29 studies specifically relatedto stress in families with medically fragile children andgrouped stressors into four categories: role conflictbetween parenting and providing care for the child;financial burdens from work restrictions to providecare and uncovered expenses; care burdens such as theinability to take time off from caregiving; and impairedindependence including a lack of respite care anda lack of social support. Wang and Barnard (2004)reviewed literature about technology-dependent chil-dren living at home and their families. They identifiedmany of these same stresses for families and parents,describing a changed meaning of home from a place ofcomfort for families to a place of technical care provi-sion. They added information about social isolation ofchildren. They discussed the shift in responsibility andcosts from institutions to families and questionedwhether costs to parents in time andmoney have beenadequately considered. These themes of stress,strained relationships with home care providers,changed meaning of the home, and family burdens arereiterated by Lindahl and Lindblad (2011), who con-ducted a metasynthesis of 12 qualitative researchstudies focused on family members’ experiences ofeveryday life when a child was ventilator dependent(N ¼ 91 ventilator-dependent children, 24 siblings, 60fathers, 190 mothers, and 2 grandparents). In addition,Lindahl and Lindblad synthesized findings related tothe experience of the child receiving ventilation andsiblings. They stressed the 24-hour sense of parentalresponsibility, including the need to educate others,both within and outside the family. They suggested


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that future research should use more longitudinalresearch designs and focus more specifically on familystrengths and the professional support familiesreceive.

Recently, medical colleagues have focused attentionon the need to more specifically define the populationof children requiring complex care, their impact onhealth care systems, and their medical care needs. Forexample, Feudtner et al. (2001) developed a definitionof CCC based on a long list of specific diagnostic codesoften used for billing purposes to study deaths amongchildren with CCC and make suggestions for theirtime-limited support needs, such as palliative care.They found that 16% of deaths of 0- to 24-year-oldswere due to non-cancer CCC. Edwards et al. (2012)modified this list of codes to study pediatric ICUadmissions. They discovered that 53% of U.S. pediatricICU admissions in 2008 were children with CCC, andthis group was at increased risk for higher mortalityrates and prolonged lengths of stay than childrenwithout chronic conditions. Simon et al. (2010) alsoused diagnostic codes to study U.S. inpatient hospi-talizations over time for children with CCC and foundthat they accounted for 8.9% of all pediatric admissionsin 1997 and 10.1% of admissions in 2006, withincreasing proportions of pediatric hospital days anddeaths during this time period. They concluded thatCCC-associated hospitalizations are consuminga larger portion of inpatient care and resource use. Kuo,Cohen, Agrawal, Berry, & Casey (2011, p. 1020) calledthis population “more medically complex” and usedvariables from the 2005 to 2006 national survey ofCSHCN, such as technology use and care by two ormore subspecialists, to profile caregiver challenges.They found that parents reported spending amedian of2 hours per week on care coordination, and 48.8%stated that a family member had stopped workingbecause of the child’s health. Cohen et al. (2011, p. 529)used a similar term “children with medicalcomplexity” and pointed out the variety of labels anddefinitions used by researchers studying this pop-ulation. They proposed a definition based on fourdomains that would facilitate medical care and theintegration of services between primary care medicalhomes, tertiary care, the home, and communityservices. The four domains included family-identifiedservice needs and impacts, chronic conditions knownor unknown, functional limitations, and health careuse. They recommended that these domains be used todevelop valid and reliable tools for this population andthat research should focus on meeting family-identified needs, reducing health complications,addressing functional limitations, and reducingunnecessary health care use. Depending on the aims ofthe proposed research, nurse researchers wouldundoubtedly find some of these definitions helpful.However, given nursing’s focus on parenting, familyexperiences, and descriptive and qualitative methods,a definition that is succinct and inclusive of the group

of children who need complex nursing and parent-provided care is needed.

Methods

An integrative review,using themethodologydescribedbyWhittemore and Knafl (2005), was undertaken. Stepsin the process included problem identification, litera-ture search, data evaluation, data analysis, andpresentation. An electronic search of PubMed andCINAHLwas conducted, focusing on parenting childrenwith complex needs. These two databases were chosenas likely to representmost publications inwhichnursespublish research with a variety of specific goals anda diversity of methods. Parenting was chosen as thefocus because parents are the adultswithwhomnursesmost commonly partner to care for children. Pediatricnursing is explicitly family focused, and parentsfrequently serve as family spokespersons and speak oftheir own experiences in terms of family outcomes(AmericanNursingAssociation,NationalAssociationofPediatric Nurse Practitioners, & Society of PediatricNurses, 2008). Major search terms were identifiedfrom past reviews and current descriptions of childrenwith complex needs: CSHCN, chronic illness, medicallyfragile, medically complex, and technology-dependent.Each of these termswas combined with the terms “andcomplex,” “andparent,” “andmother,” and “and father”for articles between 2002 and 2012. This time framewaschosen to represent the last decade and update majorreviews that included a wide variety of children withCCC published in 2002 (Harrigan et al., 2002; Ratliffeet al., 2002). This strategy resulted in 505 articles thatwere further screened. Many were eliminated becausetheir focus was not parenting children with CCC or thefirst authors were not nurses. This resulted in 155 arti-cles that were downloaded electronically or copiedfrom printed journals. Abstracts or portions of thearticles were read to identify original research andexclude articles with a clinical care, policy, or theoret-ical focus. Because the emphasis was on long-termparental care, research focused on end-of-life careand nonparental family members was also excluded.Articles that includedothers serving asprimary familialcare providers, such as grandparents or foster parents,were included. Two research reports were added afterreviewing reference lists. This search yielded 22research reports, included in the final review.

These articles were reviewed for rigor using anappraisal tool for articles included in mixed studiesreviews (Pluye, Gagnon, Griffiths, & Johnson-Lafleur,2009; Pluye et al., 2011). Criteria included publicationin a peer-reviewed journal, a clear purpose statement,institutional ethical review, and systematic datacollection and analysis. Separate criteria for rigor wereused for qualitative (e.g., credibility, context, andreflexivity) and quantitative studies. Quantitative


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subcategories and criteria (e.g., valid and reliableinstruments, standardized procedures and definitions)were included for randomized trials, nonrandomized,and descriptive designs. Articles were reviewed forpurpose, design and sampling strategies, variables andmeasures, findings, and limitations. Descriptive detailsof the included studies are listed in Table 1. Quantita-tive instruments were described by the authors asreliable and valid except where listed underlimitations.

Data analysis included developing categories offindings, synthesizing similar results, and comparisonof cross-study findingswith original articles, to identifyimportant themes. Because of the lack of a generallyaccepted label and definition for children who are CCC,sampling criteria were compared across studies forcommon patterns and to see if there were common-alities of findings within the broad rubric of CCC thatmight lead to a standardized definition that would beuseful for nursing research.

Results

Definitions and Sampling Criteria

Of the 22 studies in this review, 13 used qualitativedesigns and 9 used quantitative descriptive designs.Sampling criteria were quite variable. Children weredescribed most commonly as “medically fragile” or“technology dependent.” However, even when criteria,such as “ventilator dependent” appeared straightfor-ward, there were often variations such as hours perday of ventilator use, type of ventilation, or mode ofdelivery. Technology use or dependence was acommon thread, although researchers also acknowl-edged that conditions change and there were oftenchanges in level of technology use and care regimensover time, with some children making progress andsome requiring more care either permanently ortemporarily.

The most common definitions used were derivedfrom the 1987 Office of Technology Assessment (OTA)census of technology-dependent children (OTA, 1987),from a now-defunct agency of the U.S. Congress. Thatreport acknowledged great variation in technology usebut created a rubric of four categories, includingmechanical ventilation, intravenous nutrition ormedication, respiratory or nutritional support, andother devices needed to support health such as apneamonitors, dialysis, or colostomies. The OTA report alsoincluded a definition of medically fragile that specifiedeither reliance on a medical device to compensate forthe loss of a vital bodily function or the need forongoing, extensive nursing care to avert death orfurther disability. The OTA definition of medicallyfragile children is outdated because the use of tech-nology can vary between complete dependence andpartial, variable, or recurrent use, and “nursing care” is

now routinely delivered by parents or other familymembers for children who use technology, or haveother complex needs, or both. The term medicallyfragile also connotes a level of weakness that may notfully reflect the resilience and perseverance of childrenand their families in the face of immense challenges.An updated definition to replace that of the OTA isproposed: “Children with complex chronic conditions(CCC) are thosewho require ongoing skilledmonitoringand care from family or professional caregivers. Theyuse complex supportive therapies, often includingtechnology, to enhance health and well-being, andavert death or further disability.” The OTA categories oftechnology dependence continue to provide a usefulschema if that level of specificity is required.

Impacts of Providing Care for Children With CCC inthe Home

Care for children was described as “complex,” indi-cating the need for continuous monitoring andfrequent active caregiving. Care might be procedural,such as suctioning ormedication administration, or forroutine activities of daily living, such as feeding ordiapering. Children often required parental assistancewith both these types of care throughout childhoodbecause of the complexity of care or delayed achieve-ment of developmental milestones.

Several broad themes were recurrent across studies.These included the emotional impact of providingdemanding home care, the effects on parental roles,the stresses of working with HCPs, efforts to normalizefamily life, impacts on social relationships and activi-ties, and moral implications of home care. These aresummarized in Table 2.

Emotional ImpactsThe emotions of stress, worry, fear, anxiety, andfeeling overwhelmed, particularly when first assumingcare for the child at home, were reported across the agegroups and categories of complex care. The studies ininfants measured levels of negative emotions andcorrelated them with various outcomes. In a studycomparing Black and White mothers, Miles, Burchinal,Hoditch-Davis, Brunssen, andWilson (2002) found thatall mothers were stressed by the infant’s appearanceand their altered roles. They were worried about theinfants’ health, and mothers with less education weremore worried than those with more education. Blackmothers were somewhat more stressed by the sightsand sounds of caregiving than Whites.

Lee, Holditch-Davis, and Miles (2007) measured highlevels of depression symptoms ofmothers ofmedicallyfragile infants over 12- to 18-month time frames. Leeet al. (2007) associated high maternal depression withlower positive infant interactions at 6 months,although these improved by 12 months. Greaterpaternal helpfulness was correlated with highermaternal involvement scores in mothers with low


Table 1 e Nursing Studies of Parenting Children With CCC

Authors (Year), Country Purpose and Design Population/Sample Variables/Data Collection andAnalysis

Main Findings Limitations

1. Carnevale et al. (2006),Canada

To explore the moraldimensions of family lifeand parenting a child whois ventilator assisted

Design: qualitative, interpretive

N ¼ 38Family members of 12

ventilator-assisted children,8 using facemask ventilationand 4 with tracheostomies.Most received ventilationprimarily at night.Participants included 11mothers, 7 fathers, 9siblings, and 11 childrenreceiving ventilation.

Focus was on families’ moralexperiences.

Data collection: semistructuredinterviews and fieldworkobservations conducted infamily homes. Group familyinterviews were followed byindividual interviews withparents and sometimeschildren. Data analysisthrough thematic analysis,followed by interpretiveanalysis (using the methodsof Zaner and Benner).Attention to rigor throughdiscussion of preliminaryanalysis with participants,pilot participants, and peers,sample size determined bydata saturation. Auditabilityestablished by peer review.

Overarching phenomena wasliving with distress andenrichment, with six themes:

(a) Parental responsibility,which was often stressful andsometimes overwhelming.

(b) Parents and familiessought normalization throughestablishment of routines andstability. This was not alwaysachievable.

(c) Conflicting social valuesbetween parents’ views of theirchildren’s worth and theirperceptions that less value wasplaced on their children’sexistence by theircommunities.

(d) Living in isolation becausefamilies rarely knew anyoneelse living with similarillnesses or technology. Theyfelt that neither their extendedfamilies nor communitymembers understood theirlives or constraints. Because ofthe complex needs of theirchildren, they could not easilyfind respite care.

(e) Children who wereventilated and their siblingsrarely were able to speak outabout their own experiences,and parents needed toconsciously encourageadolescents and young adultsto participate in decisionmaking.

(f) Parents questioned themoral order. They found thatlife was unfair. Religiousparents attributed theirsituation to God’s will.

Parents’ constant comparativeanalysis expressed that there wasreally no free choice and they weredoing what they needed to do tocope with life. The alternatives ofinstitutionalization or death fortheir children were not viablechoices, and they could notimagine life without theenrichments and rewards availablefrom living with their child. Theyworried about the future.

It is not clear exactly howmanychildren participated inindividual interviewsfollowing the group familyinterviews.

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2. Carter et al. (2007), UnitedKingdom

To explore best practice inmultiagency working andthe experiences of familiesof children with complexhealth needs

Design: appreciative inquirydefined as an organizationalchange and developmentstrategy that focuses onwhat is good and strong in anorganization and buildsupon it

N ¼ 6920mothers, 7 fathers, 1 child, 13

community nurses, and 28other professionalsincluding social workers,pediatricians, therapists andteachers. Participants camefrom two counties withdifferent health economieswithin one region ofEngland. Children of parentsor served by professionalswere described as 18 monthsto 19 years old and havingcomplex needs includingmedical fragility andtechnology dependence, andusing multiple health andother community services.Specific criteria for inclusionnot stated.

Focus was to identify bestpractices to serve childrenand families and to buildupon them.

Data collection took place inthree stages:

(a) Appreciative interviews,which were individualnarrative interviews withparents and professionalsin which best practicestories were solicited.Researchers developed 50trigger statements frominterviews.

(b) Interview participantswere invited to participateand nominate othersinvolved in caring for thechildren to attend nominalworkshops in which thetrigger statements wereused to develop bestpractice statements, whichwere synthesized byresearchers.

(c) Participants wereinvited to consensusworkshops to consider thesynthesized best practicestatements.

Researchers finalized bestpractice guidelines fromprioritized and refinedstatements from workshops.

Ten guidance planswere produced,which investigators aimed to useto inform multiple serviceproviders how to better servechildren and families. A reportwas written and disseminationworkshops were held. Based onresults, a pilot plan to establisha single point of access andreferral is being piloted. The 10guidelines for best practicesstated that things work bestwhen:

(a) the child and family are centralto information and decisionmaking;

(b) everyone involved in careworks closely and sharesa common vision;

(c) there is mutual respect andcommon understanding ofroles;

(d) people and systems areaccessible, flexible,available, and responsive;

(e) communication is timelyand appropriate;

(f) family needs and time arerespected;

(g) innovation andcollaboration are encouraged;

(h) parents are linked to otherparents;

(i) information is streamline andcentrally accessible, and

(j) parents have the choice fora long-term care coordinator.

Lack of specific inclusion/exclusion criteria forparticipating families limitapplicability of findings. Itwas unclear exactly which ofthe participants took part inthe various stages of datacollection. There was limitedparticipation from childrendue to young age or severedisabilities, and limitedinvolvement of minoritysamples, further limitingapplicability.

Authors stated that theappreciative inquiry methodis still being developed andthat they modified existingguidelines to suit theirneeds, having unknowneffects on rigor.

3. Hobson & Noyes (2011),Wales, United Kingdom

To describe roles, feeling andsupport of fathers whoprovided care for childrenwith complex health andnursing care needs

Design: exploratory qualitativedescriptive

N ¼ 8Purposive sample of seven

fathers and one stepfatherwho provided either full-time or substantial care forchildren aged 16 months to16 years with technologyuse, complicated medicationregimes, and other complexcare.

Focus on fathers’ perceptions,feelings, and desires.

Data from face-to-face, open-ended interviews and fieldnotes. Data analyzed bybreaking down meaningunits, developing categories,and grouping similar ideas.

Fathers providing full-time carewanted or created structuredroutines. Fathers working full-time provided care after work orwhen needed and experiencedsome stress in negotiating timeoff to provide care. Some fatherswere uncomfortable providingintimate personal care,especially after puberty, forexample, menstrual care. Carewas often rewarding, fathersexperienced health servicespositively but had some negativechallenges with social andeducational services, and therewas a lack of community-basedfather/family support servicesand some fathers felt guilty ifservices were focusedspecifically on their needs.

Small sample and singleinterviews limit wideapplicability.

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Table 1 e (Continued )Authors (Year), Country Purpose and Design Population/Sample Variables/Data Collection and

AnalysisMain Findings Limitations

4. Holditch-Davis et al. (2011),United States

To determine whichcomponents of maternalrole attainment (identity,presence, and competence)influenced quality ofparenting for medicallyfragile infants during thefirst 12e16 months of life,controlling for maternaleducation and infant illnessseverity

Design: quantitative,correlational, longitudinal

N ¼ 72Mothers and medically fragile

infants defined as needingextended hospitalization,dependent on medicaltechnology for bodilyfunctions, or had a chronicillness that would lead torepeated exacerbationsduring the first year of life.

Variables were components ofmaternal role attainment:maternal identity measuredfrom a questionnaire atenrollment in the study,composite scores ofmaternal presence andmaternal competence at 6and 12 months obtainedfrom maternal interviews,observations of maternaleinfant interactions, andassessment of theenvironment with the HomeObservation forMeasurement of theEnvironment (HOME) 0- to 3-year version. Parentingquality was determined bya composite measure ofmaternal responsivenessscored from videotapes ofmaternaleinfantinteractions, a rating scale ofthree quality outcomes: levelof maternal participation inmeeting child’s needs from0 to 6 months, quality ofbasic and developmentalcaregiving, andmanagement of child’shealth and illness needs, andmaternal perceptions of theease of caring for the infant(About My Babyquestionnaire), and theinfant’s vulnerability(Vulnerable Child Scale).Covariates were maternaleducation (demographicform) and child illnessseverity (technologydependence score from theOTA classifications andinvestigator additions, andthe Mental DevelopmentIndex of the Bayley Scales ofChild Development).

Parenting quality variables ofparticipation, normal caregiving,and illness-related caregivingwere correlated at 6 months, butother parenting quality variableswere not related. At 16 months,normal caregiving, illness-related caregiving, and maternalresponsiveness were correlated,but other variables were notcorrelated. Maternal roleattainment influenced parentingquality more than illnessseverity. Mothers with lowercompetence and moretechnology-dependent infantsperceived their children to bemore vulnerable and children’scues as more difficult to read.Maternal presence wasnegatively related to illness-related caregiving andparticipation. Higher technologydependence was related to morematernal participation. Maternaleducation was only related tonormal caregiving, andinvestigators concluded thatmaternal education was mostinfluential by positively affectingmaternal competence. Infantillness-related variables did notinfluence parenting quality, andBayley scores did not predict anyoutcomes. Technologydependence did predict lessmaternal participation, lesspositive maternal views of theease of caregiving, and a greatersense of the child’s vulnerability.

Small sample size and largenumber of variables indicatethe need to replicate thestudy with a larger sample.The unique constructs andmeasurements for this studyhave not been studied innormal infants and/or othermedically fragile infantsamples.

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5. Judson (2004),United States

To examine the process ofmothering a child receivingparenteral nutrition

Design: qualitative, groundedtheory

N ¼ 19Purposive sample of mothers of

children dependent onparenteral nutrition.Children were2e19 years old and usingtotal parenteral nutrition,life-sustaining fluidsmachine pumped througha central venous catheter. 15mothers were married, allwere White.

Focus of interviews was thepractice and interpretationof the mothering role.

Data collection through open-ended, single interviews.Data analysis through atwo-step coding process andconstant comparativeanalysis. Rigor wasenhanced through memberchecking, peer review, andcreation of an audit trail.

Findings described the basic socialprocess: the theory of protectivecare. This theory included threephases: gaining control, takingcontrol, and maintainingcontrol. The theory wasconstructed from categoriesincluding a commitment to carefor the child, watching over thechild, challenging the system,promoting normalcy andestablishing routines, puttinglife into perspective, includingcelebrating the positives.Mothers described feelingoverwhelmed at first andespecially a fear of thetechnology. They describeda process of becomingknowledgeable and proficient atmanaging their child’s care,learning to advocate, clarifyingtheir roles. They expressed thatthey were often both mothersand nurses. Mothers receivedsupport from their faith andchurch, spouses, neighbors,coworkers, nurses, and friends.Their extended families weresometimes fearful and lesshelpful. Mothers felt pride intheir own success and theirmastery of the skills needed tosupport their child.

Sample was limited to English-speaking participants,limiting applicability to non-English speakers. Singleinterviews and fairlyhomogenous sampleindicate need for furtherresearch with thispopulation.

6. Kirk et al. (2005), UnitedKingdom

To explore parents’experiences of caring fora child who is dependent ontechnology

Design: qualitative, groundedtheory

N ¼ 3323 mothers and 10 fathers of 24

children reliant on medicaltechnology, includingrespiratory, nutritional, andvarious other supports.Ventilators were used by 6children, 10 hadtracheostomies, and 6received intravenous drugsor nutrition.

Focus on exploring parents’experiences of caring fora technology-dependentchild, and in particularperforming clinicalprocedures on their ownchild.

Data collection included singleinterviews in family homesusing open-ended questionsthat becamemore focused asthe interview proceeded.Data analysis used groundedtheory procedures includingline-by-line coding andconstant comparativeanalysis, development ofcategories, and memos. Theresearch team was reflexive,developed an audit trail, andused theoretical samplingand theoretical saturation.

Parents’ constructions of parentingwere highly influenced by thetransformed meaning of theirhomes by the presence ofmedical equipment andprofessional providers, such asnurses. They described aspectsof their roles which were astypical parents, and aspects thatwere like being a nurse. Parentsdefined their primary role asa parent and related to uniqueand different knowledge thatthey possessed as parents,which nurses could not have.They especially recognized thattheir emotional connection tothe child differentiated themfrom the nurses, and they feltthey could personalize their carebecause of their uniqueknowledge of the child. At thesame time, parents shared

The homogenous samplepotentially limitedapplicability to non-Whitepopulations. Singleinterviews may further limitapplicability.


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aspects of nurses’ roles inlearning tomanage the technicaland procedural aspects of care.They disliked having to causedistress or harm to the child. Thepresence of nurses and otherprofessionals in the homeconstrained communication andinterrupted privacy in a varietyof ways, such as alteringarguments or demonstrations ofaffection with family members.

7. Kuster et al. (2004), UnitedStates

To examine factors related tohealth-promoting and self-care activities of motherscaring for a ventilator-assisted child

Design: quantitative,correlational, descriptive

N ¼ 38Mothers (34 biological, 2

adoptive, 1 grandmother,and 1 foster mother) ofchildren who requiredventilator assistance at leastpart of every day. Mother’smean age was 37.5 years,76% were married, 42% wereWhite, non-Hispanic, and37% were Hispanic/Latina.Five completed the datacollection in Spanish; therest spoke English.Children’s average age was8 years; half of them werefemale and had been usingthe ventilator for an averageof 6 years for an average of17 hours per day. Nursingcare in the home wasavailable to 89% of families,with an average of 14 hoursper day.

Variables included werefunctional status of child,impact of the illness on thefamily, coping, socialsupport, and demographicdata. Measures were theFunctional Status IIinstrument, Impact on theFamily Scale, the SocialSupport Index, the CopingHealth Inventory for Parents,and the Personal LifestyleQuestionnaire, and aninvestigator-designeddemographic questionnaire.

Almost 90% of mothers did notsmoke and 84% never drankmore than two alcoholicbeverages a day. Sixty-sixpercent of women ate at regularintervals during the day. Eighty-two percent of mothers said theynever or only occasionallyparticipated in physical activitysuch as jogging or swimming atleast three times a week. Fifty-seven percent never oroccasionally took time to relax,60.5% stated they never oroccasionally received adequatesleep, 74% were never oroccasionally able to get togetherwith friends. More than half(55%) saw a HCP once a year and45% only saw a provideroccasionally or rarely on a yearlybasis. Functional status of thechild and coping behaviors werepositively correlated withparticipation in healthpromotion activities, in contrastto impact of the child’s illness onthe family, which was inverselycorrelated to health promotion.Functional status of the child

Reliabilities were not availablefor the Spanish version ofthe Functional Status IIinstrument, the Spanishversion of the Impact on theFamily Scale, or the CopingHealth Inventory for Parents.No Spanish version of theSocial Support Index or thePersonal LifestyleQuestionnaire was available,so they were professionallytranslated for this study.These language issues andthe relatively small samplecould have introducedthreats to internal validityand bias into the results.Because there was no controlgroup of mothers of healthychildren, differences fromnormal patterns of mothersare unknown.

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and coping were predictors ofparticipation in healthpromotion activities.

8. Lauver (2010), United States To explore the experiences ofrural foster parents withchildren with multiplespecial health care needs

Design: phenomenology usingVan Manen’s (1990, 1998)methods

N ¼ 10Foster mothers with 8 months

to 20 years of experiencefostering children withcomplex needs. Motherswere 24e66 years of age,married, White, and living inrural communities. Threeparticipants had health carebackgrounds (two nursesand one physical therapist)but were not currentlypracticing. Seven werecurrently homemakers.

Focus of interviews was onmothers’ narratives ofproviding care.

Data collection based on oneopen-ended question: “Whatis it like to be a foster parentto [name of child],” andvarious probes to ask formore information. Singleinterviews lasted an averageof 2.5 hours. Data analysisincluded multiple readingsof transcripts and listeningto tapes. Whole readings andline-by-line analysis wereused to identify significantstatements, meaningstatement similarities anddifferences betweenparticipants.

Concerns of foster mothers relatedto accessing medical carebecause they often lived in ruralareas and had to travelsignificant distances for primaryand especially specialty care.There were often nopediatricians or specialists intheir own communities. Ruralliving also imposed isolation,and the mothers often did nothave access to respite care andfound it difficult to leave theirhomes because of caregivingdemands. Foster parents oftendid not receive adequatepreparation for the needs of thechildren and did not know theextent of their caregiving needsat the time of placement in theirhomes. They described feelingoverwhelmed by their lack oftraining and experience withcomplex caregiving. Because oftheir foster parent status, it wasoften difficult to make decisionson behalf of the child, even inacute situations because ofambiguities in the consentprocess, legal barriers, anddifficulty in reaching biologicalparents or courts if they haddecisional control. Fostermothers experienced stigma andwere sometimes treateddisdainfully. They felt HCPs didnot always understand theirneeds or share informationabout the child.

The small, all White, sampleand unique nature of thisstudy with foster parentsmake it difficult to assesswhether these issues arecommon and point to theneed for further researchwith this population.


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9. Lee et al. (2006), UnitedStates

To examine mothers’perceptions of support fromfathers during the first yearof amedically fragile infant’slife

Design: secondary analysis oflarger study. Quantitative,descriptive, longitudinal

N ¼ 64Mothers who were married or

living with the father duringthe study completedinstruments about thefather’s support at leasttwice. Infants weretechnology dependent,hospitalized at enrollment,and likely to have seriouschronic health conditions.

Variables and measures: theStress Support Scaleassessed maternalperceptions of paternalhelpfulness and satisfactionwith paternal support,measured at enrollment,1 month after discharge andat 1 year (adjusted forprematurity) of infant age.The scale was adapted fromthe Sources of Help Tool forhelpfulness and theSatisfaction with SupportTool for satisfaction withpaternal support. Maritalstatus was assessed withdemographic forms. Theinfant birth weight andgender were taken from themedical record. Infanttechnology dependencefrom the OTA classificationwith further categoriesdeveloped by investigatorsincluding medication use.

Mothers reported fathers to be veryhelpful, with scores of 14.3e17.5out of 20 possible. Marriedmothers were similar tounmarried in perceptions ofhelpfulness but were moresatisfied with paternal support.Mothers of female infant’sreported more support thanmothers of male infants, a trendthat increased over time. Despitethis increased level of help, theywere not more satisfied withpaternal support than mothersof male infants. There was nodifference in paternal supportrelated to either birth weight orlevel of technology use.

Low levels of reliability(Cronbach’s alpha) on thehelpfulness of support scale(.52 at enrollment and .65 at1 month after discharge)may threaten internalvalidity and indicate thatmore work is needed on thisscale. Definition of paternalsupport as maternalperception of paternalsupport may not captureactual paternal behavior.

10. Lee et al. (2007), UnitedStates

To examine the influences ofmaternal and infantcharacteristics, and paternalsupport on maternalinteractions with medicallyfragile infants

Design: quantitative descriptive

N ¼ 59Maternaleinfant dyads.

Hospitalized infants enrolledat average 6 weeks andexpected to remain relianton technology for at leasttwo more months and to bedischarged from hospitalwith chronic healthproblems.

Variables: maternal positiveinvolvement and maternaldevelopmental stimulation,assessed at 6 and 12 monthsusing direct observation ofinteractions and the0- to 3-year version of theHOME Inventory. Inter-raterreliabilities 85%e97%.

Maternal depression measuredusing CES-D, maternaleducation usingdemographic form, infantbirth weight from medicalrecord, infant technologydependence from OTAclassification with furthercategories developed byinvestigators includingmedication use, andmaternal perceptions ofpaternal support using theStress Support Scale.

Overall, maternal interactionswere affected by maternal,infant, and environmentalfactors and effects changed overtime. Higher maternal educationwas associated with greatermaternal positive involvement.Less maternal involvement at6months, butmore at 12monthswas associated with morematernal depression, moreinfant technology dependence,and lower birth weight. Higherpaternal helpfulness wasassociated with higher maternalpositive involvement if therewere low depression symptomsbut not if there were high levelsof depression symptoms. Moredevelopmental stimulation wasassociated with higher maternaleducation and more depressionsymptoms.

Measurements at only twotime points potentially limitability to capture full pictureof interaction patterns.Lower internal consistenciesof maternal involvementand developmentalstimulation dimensions ofsome of the measures (.59e.73) may have been affectedby variations in infantdevelopmental and healthstatus. Definition of paternalsupport as maternalperception of paternalsupport may not captureactual paternal behavior.

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11. McDonald & Callery (2007),Canada and UnitedKingdom

To create a developmental mapof the trajectory ofcaregiving and need forrespite care over time forparents of children requiringcomplex care

Design: ethnographic

N ¼ 43Purposive sample from respite

care and communitysettings, of 15 mothers, 4grandmothers, 4 fathers, 3grandfathers, 13 nurses, and4 social workers caring forchildren with complex needsincluding technology use,complicated medicationregimes, bowel care,catheterization, and oxygen.

Focus on caregivingexperiences and use ofrespite care services overtime.

Data from in-depth interviewsof families in their homesand professionals at theirwork sites, participantobservation, and documentreview. Data analyzed bycoding using participants’words, development ofcategories, and leading tothick (contextual)description.

A developmental map wasconstructed from parents’accounts of providing complexcare. Map described evolvingneeds for respite, with morerespite needed as the child’s caregenerally increased incomplexity and intrusivenessover time. Parents expresseda fear of the future anduncertainty about the change toadult services at 18 years of age.

Ages of children at the time ofinterview not given; singleinterviews of retrospectiveaccounts rely on parentalrecall at one point in time.

12. McDonald & Gibson (2010),Canada

To increase understanding ofthe impact of stigma andnormalization on parents ofchildren receiving complexcare

Design: ethnographic

N ¼ 4719 mothers, 4 fathers, 4

grandmothers, 3grandfathers, 13 nurses, and4 social workers. Childrenhad complex needsincluding technology use,complicated medicationregimes, bowel care,catheterization, and oxygen.

Data from in-depth interviewsof families in their homesand professionals at theirwork sites, participantobservation, and documentreview. Data analyzed bycoding using participants’words and development ofthemes. Reviewed historicaldevelopment ofnormalization.

Parents were not able to usenormalization as it is oftendescribed in the literature.Barriers arose from societalattitudes toward disability thatcreated stigma and the visibilityof the need for complex care thatpermeated multiple aspects oflife. Parents coped with thisstigma and tried to normalizechildren’s lives by “keeping upappearances.” This meantdressing and grooming the childin a modern and attractivemanner. For themselves, theysought some level of escape byusing respite care services to beable to relax, get away fromcaregiving temporarily, sleep,and spend time with otherchildren.

Ages of children at the time ofinterview not given; singleinterviews of retrospectiveaccounts rely on parentalrecall at one point in time.

13. Miles et al. (2002), UnitedStates

To describe Black and Whitemothers’ perceptions aboutstress, worry, and supportwhile their medically fragileinfants were hospitalized

Design: quantitative descriptive

N ¼ 6931 Black and 38 White mothers

of infants >30 days of agehospitalized in neonatal orpediatric intensive care withserious illness requiringperiod of technologydependence andhospitalization. Both termand preterm infants wereincluded.

Variables: hospital-relatedstress, severity and worry,and support from nursingstaff

Data from five self-reportquestionnaires administeredduring times of relativestability duringhospitalization (no acutecrisis at that time).Cronbach’s alpha’s ofquestionnaires acceptable.

All mothers reported high stressaround infants’ appearance andmoderately high stress aroundaltered maternal role andinfant’s health, and high supportfrom nurses and HCPs. Blackmothers were more stressed bythe sights and sounds of thehospital thanWhite mothers butwith moderate stress on thisvariable. Mothers with lesseducation had more worry abouttheir infant’s health thanmothers with more education.

22% refusal rate duringrecruitment due to familystress.

At the time of enrollment, Blackinfants were older (mean14weeks) thanWhite infants(mean 9 weeks), indicatinglonger hospitalizations.More White infants thanBlack infants (42% vs. 16%)had multisystem healthproblems, which may haveindicated greater severity ofillness.

14. Miles et al. (2011), UnitedStates

To identifymaternal and infantself-report and behavioralvariables that are importantto measuring components ofmaternal role attainment:maternal identity, presence,and competence; and to

N ¼ 81Mothers of medically fragile

infants defined ashospitalized at enrollment,technology dependent for atleast 2 months, expected tohave chronic illness, 65%

Maternal role attainment, withconstructs of maternalidentity, maternal presence,and maternal competence.Composite scores frommaternal identity scale,coding presence/absence of

Combined maternal identity scoresand interview ratings had lowreliabilities and variabilities overtime; so only maternal identityscale enrollment data were used.Cronbach’s alpha .90 for thisscore. For maternal presence,

Small sample size for complexdata analysis and multiplevariables limitgeneralizability. Uniqueconstructs and measures ofmaternal role attainmentmake comparison with other


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explore the influence ofinfant and maternalcharacteristics on thesecomponents in mothers ofmedically fragile infantsduring the first year of theinfant’s life.

Design: quantitative,descriptive, longitudinal

premature, mean gestationalage at birth 33.5 weeks.

identity as parent, behaviorsindicating presence andcloseness, and feeling ofcompetence from threeinterviews over 12 months,naturalistic observations ofmaternaleinfantinteractions and the HOMEInventory. Infantcharacteristics includingfrom the Vineland scale,naturalistic observation,technology dependencescale, and days hospitalized.Maternal characteristicsfrom parent stressor scale,child health worry scale,Family Apgar, education,marital status, and race/ethnicity.

there was low variability at 6 and12 months for interview ratings;so only enrollment data wereused. Cronbach’s alphas forcomposite were .61 atenrollment, .78 at 6 months, and.51 at 12 months. For maternalcompetence, one observationalvariable, mother negative, wasremoved for low variability.Cronbach’s alpha for thecomposite was .63 at enrollment,.81 at 6 months, and .79 at12 months. Mothers with lessworry had higher levels ofmaternal identity. Maternalpresence was increased for lessalert infants. Maternalcompetence was increased formore alert infants, lower rolestress, increased education, andmarried status.

work difficult. Additionalresearch is needed todevelop these aspects ofmaternal role attainment.

15. Montagnino & Mauricio(2004), United States

To describe perceived stressorsand coping strategies of theprimary caregiver for a childwith a tracheostomy andgastrostomy

Design: quantitative,descriptive, pilot,retrospective

N ¼ 1817mothers and 1 fostermother,

13 married, half with otherchildren, 16 receiving somelevel of home nursing careassistance, all Englishspeaking, no racial/ethnicdata given, mean age30.8 years.

Children 0e18 years dischargedfrom a children’s hospitalwith a tracheostomy andgastrostomy, cared for athome for a mean of15 months, age at time oftracheostomy andgastrostomy was 2 weeks to14 years. All children wereinsured.

Variables: parental stress andcoping

Measures: the Impact on FamilyScale, the Family CrisiseOriented Personal EvaluationScales, and an investigator-developed demographicquestionnaire. Caregiverswere asked to give writtenresponses to three open-ended questions askingmoststressful even during child’shospitalization, moststressful event at home, andany other information theywanted investigators toknow about beinga caregiver.

Caregivers were coping andperceived themselves asfinancially stable. Mothersbelieved there was a disruptionof their social interactions bothwithin and outside of the familybecause of the child’s condition.This sample reported morepersonal strain than normativesamples but less strain thanparticipants in other studies ofcaregivers of children withchronic conditions. In open-ended questions, mothersreported anxiety about learningnew skills, handlingemergencies, fatigue, and socialisolation.

Low response rate (18 of 50,36%) of mailedquestionnaires may threateninternal validity ofresponses. Small sample sizeand convenience samplewith no racial/ethnic datagiven limits generalizability.

16. O’Brien & Wegner (2002),United States

To explore the perceptions ofparents and home carenurses about rearing thetechnology-dependent child

Design: qualitative,naturalistic, descriptive

N ¼ 3116 parents (14 mothers and 2

fathers) from 14 families,and 15 home care nurses. 14parents were White, 14 weremarried. Children were 2e7 years of age, were receivingmechanical ventilation, and/or had a tracheostomy (OTACategories I and III [1987]),and were cared for at homefor at least 6months. Parents

Focus was parents’ and nurses’perceptions of rearing thetechnology-dependent child,effects of technology, andnegotiations betweenparents and nurses.

Data collection took place infamilies’ homes. Singleinterviews included open-ended and semistructuredquestions. Analysis includedcoding, construction of

Two major themes were identified:(a) parenting was often

similar to raising nonetechnology-dependentchildren but different becauseextra time and effort wereneeded to manage equipment,plan for caregiving, andcompensate for limitationsimposed by the equipment andhealth constraints. Nurses didnot state that raising the

Sample was limited to English-speaking participants,limiting applicability to non-English speakers. Singleinterviews and fairlyhomogenous sampleindicate need for furtherresearch with thispopulation.

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had experience with homecare nurses, and nursesmust have been providingcare for technology-dependent children for atleast 6 months.

categories and themes, andvalidation of preliminaryanalysis with a subsequentgroup of sixmothers and twoadditional nurses.

technology-dependent childwas similar to raising otherchildren. Parents desired tonormalize the child’s life asmuch as possible. Parentsacknowledged fear about thechild’s safety and health. Bothparents and nurses consideredchild discipline and behavioralexpectations to sometimes bedifferent for children reliant ontechnology. Parents reportedfatigue and strain frommanaging relationships withnurses and lack of privacy frompresence of nurses, and

(b) communication andnegotiation with nurses aboutchildrearing expectations withhome care nurses wereessential but challenging. Mostparents and nurses agreed thatparents should directchildrearing decisions, butboth parents and nursesreported conflicts and useda variety of strategies to resolvethem, most commonly directverbal or writtencommunication. Both parentsand nurses used casemanagers or nursingsupervisors to resolve conflictson occasion. Both parents andnurses also sometimes usedpassive strategies such asasking that a nurse not beassigned to the home anylonger, changing staffingagencies, and quitting the case.

17. Reeves et al. (2006), UnitedKingdom

To explore and understand thenegotiation of care asexperienced by parentscaring for technology-dependent children whilethey were hospitalized.

Design: descriptive,exploratory, qualitative

N ¼ 6Parents chosen for their insight

into the phenomenon

Focus on experiences ofparents and involvement intheir care of theirhospitalized child.

Data collection: singleinterviews in family homes.Interview guide formulatedin response to the literaturereview. Data analysis:repeated whole transcriptreadings, identification ofkey points and developmentof key words and themes,comparison betweentranscripts.

Parents often felt that nurses madeassumptions about the role thatthey as parents would take ascare providers while the childwas hospitalized. Actualnegotiations or planning aboutwho would provide particulartypes of care were often missing.Parents who were experiencedcare providers were surprised atthe lack of skills and confidenceof nurses who rarely cared fortechnology-dependent childrenin the hospital setting. Parentssometimes felt they knew morethan the hospital nurses and

Lack of information aboutsample characteristics,analytic procedures, verysmall sample, and singleinterviews limitapplicability. Because nursesdid not participate in thisstudy, it is unclear if theywould share parents’perceptions about the caredelivered or the confidenceand skill levels of thehospital nurses.


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wished they had received moreskills and confidence from theirtraining and experience inproviding care. Parents oftentaught the nurses how to care fortheir children. Parents becameempowered as they gainedconfidence in their own skills,and they were sometimesuncomfortable with the changein autonomy and power whenthe child returned to thehospital. Parents sometimesfeared to leave the child alone inthe hospital. Parents were notconsistent in their desires abouthow much care they wished toprovide for their child,sometimes wanting the nurse toprovide care and give thema break, and sometimes wantingto do the care themselves.

18. Rehm & Bradley (2005a),United States

To explore the socialconsequences for parentsand families of raisingchildren who were medicallyfragile and developmentallydelayed

Design: ethnographic in thesociological tradition, basedon symbolic interactionframework

N ¼ 2719 mothers, 5 fathers, 1

grandmother, and 2 childrenwho were medically fragileand developmentallydelayed. Children were 5e12 years of age, had a varietyof specific diagnosesincluding cerebral palsy,genetic conditions, sequelaeof prematurity, and injurybecause of trauma, and usedsome form of technologyassistance, most commonlyenteral feeding tubes andrespiratory support such asoxygen or tracheostomy.Parents were about halfEuropean American, 39%Hispanic, and 10% Black,Native American, and mixedrace/ethnicity.

Focus of this analysis was onparents’ perceptions of howfamily relationships withothers, and family socialactivities were affected.

Single interviews using open-ended and semistructuredquestions took place infamily homes. Sample sizewas determined byredundancy and datasaturation. Data analysisincluded family summaries,coding and development ofcategories recurrent acrossfamilies, cross-case analysis,and thematic analysis toidentify major categoriesand a unifying theme.

Because of the intensity of needsand complexity of care requiredby the child, satisfying thoseneeds was a necessary startingpoint for all social activities.Three major categories wereidentified that reflected families’experiences:

(a) anticipating and planning forthe child’s needs, whichrequired families to spend timeand effort to organize anyexcursion away from home.They needed to be prepared tomeet routine and emergencyneeds of the child wherever theywent;

(b) dealing with barriers to socialparticipation which includedenvironment barriers, such aslack of public facilities to changeolder children’s diapers andclean and safe space to allowchildren to be taken out ofwheelchairs; children’sdevelopmental and behavioraldifferences, such as loudvocalizations, seizures, orincontinence, which could bestigmatizing, or irritating toothers; and attitudes of others’

The sample included mostlyWhite and Hispanicparticipants and may not beas applicable to othergroups. Single interviewsmay further limitapplicability.

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which could be negative orintolerant; and

(c) finding or crea ng realms ofsocial comfort r all membersin the family. P ents preferredthat all membe of the familybe able to parti pate inactivities or soc lize together.It was sometim necessary forthe family to sp t up so thatone parent care for the childwho was medic lly fragile anddevelopmental delayed andthe other paren spent timewith siblings w n the barriersto family partic ation couldnot be overcom . Theoverarching th e wassearching for s ial safety andcomfort in soci situations forall members of e family thatfostered relaxa n andenjoyment for l familymembers. Pare s did notnecessarily con derthemselves iso ted, but theyexperienced str ses andstrains because chievingadequate engag ment requiredextensive plann g andsearching for s e andaccepting comm nityresources and endships.

19. Rehm & Bradley (2005b),United States

To compare families’experiences in caring forchildren who were medicallyfragile/technologydependent anddevelopmentally delayed topublished attributes ofnormalization

Design: secondary analysis ofdata from two ethnographicstudies based on a symbolicinteraction framework

N ¼ 26Families including 31 unique

children from the twostudies. Children were5e18 years of age and hada variety of specificdiagnoses including cerebralpalsy, genetic conditions,sequelae of prematurity, andinjury because of trauma.They were developmentallydelayed or disabled and usedsome form of technologyassistance, most commonlyenteral feeding tubes andrespiratory support such asoxygen or tracheostomy.Children were about halfEuropean American and halfHispanic.

The focus of this study was tocombine parent data fromthe two studies and jointlyanalyze to compare theirexperiences with theattributes of normalizationpublished by Deatrick et al.(1999). Data for the twostudies had been collected inopen-ended andsemistructured interviewsconducted in family homes.Topics discussed includedthe child’s care, familyroutines, activities, andsocial lives. In the secondstudy, parents werespecifically asked theirdefinitions of normal familylife and how their familieswere like and unlike otherfamilies. Data from the twostudies were combined and

Parents’ experience indicated thatthe effects of chi ren’sdevelopmental d ays anddisabilities comp nded effectsof technology us and chronicconditions, signi antlyaffecting daily lif Attributes ofnormalization co pared withfamilies’ experie es were:

(a) acknowledgme of child’scondition: fam s did meetthis attribute; p rents didacknowledge c dition and itseffects on their ves;

(b) used a “norma lens” fordefining the ch and family(selectively em asizing waysin which child d family werelike others and inimizingdifferences): pa nts did notadopt normalc ens and didconsider thems ves differentfrom typical fa ilies;

Secondary analysis design didnot allow specific follow-upof questions about attributesof normalization, althoughmany aspects of normalfamily life were discussed.Most interviews wereconducted in English, andexperiences of people whosefirst language is not Englishmay be different.


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tifoarrsciiaeslidalytheipeemocalthtioalntsilaesaein

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reanalyzed using aninductive process for thisanalysis. All data were opencoded, followed bydevelopment of writtenfamily summaries includinghow parents conceptualizednormal family life and howtheir family fit that idea.Each interview was thenevaluated to compare withthe attributes ofnormalization. Tentativefindings were discussed withsubsequent informants toconfirm and further exploreearly conclusions.

(c) family routines consistent withnormalcy lens: parents did tryto establish routines but didnot consider them normal forother families. They strove forstability and sought pleasureand a good life, without tryingto necessarily be normal;

(d) developing treatment regimensthat were consistent witha normalcy lens: parents feltthat their child’s healthwas toounstable and treatments toodemanding to be considerednormal or to fade into thebackground of day-to-day life;and

(e) interactions with othersbased on view of their familylives as normal: parents did notsee their lives or interactionswith others as completelynormal. They oftenencountered negativeresponses from others and felttheir childrenwere stigmatizedin many public encounters.Families did not fit currentattributes of normalization,but parents did value normaland typical aspects of theirlives. Parents considered that itwas possible to have a good lifethat would not be considerednormal by others. Positiveaspects of the child’s chroniccondition were acknowledged,such as allowing a parent tostay home to care for the child,which benefited the entirefamily and forming closefamilial relationships.

20. Toly et al. (2012a), UnitedStates

To examine the relationshipbetween child’s severity ofillness, maternal depression,family functioning, andnormalization in mothers ofchildren with technologydependence

Design: quantitative,correlational, cross-sectional

N ¼ 103Mothers, aged 22e66 years

(defined as primary femalecaregivers [biological/adoptive/foster mothers,grandmothers]), of childrenaged 16 years or younger(mean age 6 years) who fellinto the OTA Categories 1e3(ventilator, intravenousmedication or nutrition, and

Conceptual model of familyfunctioning proposed basedon literature and pastempirical evidence.

Variables: child’s severity ofillness, maternal depressionsymptoms, normalization,and family functioning.Covariates of caregivingduration and amount ofhome health care nursing

Maternal depression symptomsprimarily explained 35% of thevariance in family functioning;more depression symptomswere related to poorer familyfunctioning. Significantpredictors of normalizationincluded better functional statusof child, fewer depressionsymptoms, being non-Caucasianor of Hispanic ethnicity, less

The convenience sample fromone region of the countrylimits generalizability. Thecross-sectional analysis doesnot allow determination ofcausality.

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respiratory or nutritionalsupport).

Mothers were 79% White,including 6% Hispanic, 17%African American, 2.4%Asian, and 1.2% biracial.

hours, race, family income,and child’s age also included.

Measures: CES-D fordepression; Actual Effect ofthe Chronic PhysicalDisorder on the Family,a subscale of theNormalization Scale fornormalization; FeethamFamily Functioning Surveyfor family functioning;Functional Status II-revisedfor child’s functional status;questionnaires to determinelevel of technologydependence anddemographics for motherand child.

home nursing hours, and anolder child. There were nodifferences in normalizationefforts, family functioning, ormother’s depression symptomsbased on the type of technologyused.

21. Toly et al. (2012b), UnitedStates

To test a theoretically andempirically basedconceptual model byexamining relationshipsbetween the severity ofillness, mother’s depression,and normalization withfamily functioning infamilies with a technology-dependent child twice ina 12-month period

Design: quantitative,descriptive correlational,longitudinal

N ¼ 82Participated at both time pointsMothers, aged 22e66 years

(defined as primary femalecaregivers [biological/adoptive/foster mothers,grandmothers]), of childrenaged 16 years or younger(mean age 6 years) who fellinto the OTA Categories 1e3(ventilator, intravenousmedication or nutrition, andrespiratory or nutritionalsupport)

Mothers were 79% White,including 6% Hispanic, 17%African American, 2.4%Asian, and 1.2% biracial

Hypotheses: (a) inverserelationship for severity ofillness and maternaldepression andnormalization; (b) direct,positive relationshipbetween normalizationefforts and familyfunctioning and child’s age;(c) inverse relationshipbetween depression andfamily income, and (d)positive relationshipbetween non-Caucasian raceand Hispanic ethnicity withnormalization but inverserelationship betweenamounts of home nursingwith normalization.

Measures: CES-D fordepression; Actual Effect ofthe Chronic PhysicalDisorder on the Family,a subscale of theNormalization Scale fornormalization; FeethamFamily Functioning Surveyfor family functioning;Functional Status II-revisedfor child’s functional status;questionnaires to determinethe level of technologydependence anddemographics for motherand child.

82 of original 103 participantscompleted Time 2 measures.Dropouts were mostly White,with children in OTA Category 3(least technology dependent).The only predictor of familyfunctioning was mother’s levelof depression symptoms. CES-Dscores were 16 or more,indicating high risk of clinicaldepression for 39% of mothers atTime 1 and 40% at Time 2.Contrary to the model,normalization, caregivingduration, and home nursinghours were not directly relatedto family functioning. Baselinefamily functioning predictedfuture family functioning.Mothers whose children were nolonger technology dependent atTime 2 had significantlyimproved family functioningand normalization scores. Formothers whose childrenremained technologydependent, there were nosignificant changes in familyfunctioning, depressivesymptoms, or normalizationover time.

Small sample for large numberof variables, limiteddiversity, English languagerestriction, and conveniencesampling limitedgeneralizability. Sole focuson mother as spokespersonfor family focus may skewresults and depression mayimpact perception of familyfunctioning. Various types offemale caregivers fillingmother role may affectperception of familyfunction.

22. Wang & Barnard (2008),Australia

To identify and describe thequalitatively different wayscaregivers understand theexperience of caring fora ventilator-dependent child

N ¼ 17Primary caregivers.11mothers, 4 fathers, a 15-year-

old sibling, and 1 “carer”nominated by the mother.

Children were 18 months to

Focus was on daily life andmeaning of having child athome.

Data collection took place ininterviews using open-ended questions to conduct

Outcome of analysis is a list ofseven conceptions that form an“outcome space” that togetherdescribe the phenomenon ofcaring for a ventilator-

The authors claimed that thestudy was generalizable dueto “heterogeneous” sample,but specific demographicsand comparisons to generalpopulation were not given.


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at homeDesign: phenomenology

17 years of age and werereceiving 24-hourventilation, 16 viatracheostomy and 1 bymask. One foster family hadno nurses’ care and othershad a range of overnight to24-hour nursing care in thehome.

a “purposeful conversation.”Interviews lasted 40e100 minutes. Data analysisfollowed seven steps toidentify meanings whichwere sorted, grouped, andcompared for similaritiesand differences and findrelationships and variationsin understanding.

dependent child. These sevenconceptions were

(a) the hospital was another worldto parents, not normal, withdifferent routines that did notallow them to pursue normallife;

(b) it is a whole new world cominghome and caring for the childat home. Home representedboth normal life and newexperience in providing care athome. There were benefitssuch as getting out of thehospital, but restrictions incontrolling everyday life for allmembers of the family;

(c) parents described anambiguous social identity thatincluded being both anaffectionate parent anda medical care provider.Normal activities might beinterrupted by medicalprocedures;

(d) medical technology was seenas both frightening andnecessary to have the child athome;

(e) the difficulty of havinga nursing care provider athome acknowledged thenecessity of professionalassistance, but stress becauseof lack of privacy anddisruptions in parental control;

(f) social isolation, whichresulted because intense careoften kept families at home,and reduced social activity.Parents also experienced socialdiscrimination and lack ofunderstanding from friendsand strangers, and

(g) the experience as changinga person, with both good andbad effects, including fatigue,positive attitude to life,maintaining child at home, andbecoming a better person.

Specific tradition withinphenomenology notdescribed, although claimsfor bracketing suggestdescriptive as opposed tointerpretive tradition.

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Table 2 e Major Themes From 2002 to 2012 in Nursing Research About Parenting Children With ComplexChronic Conditions

Emotional impact of providing home careDistressing impacts

Stress and worry over child’s health, appearanceFear and anxiety over learning to manage equipment and careFeeling overwhelmed when assuming responsibility for care in the homeDepression symptoms

Positive impactsCommitment to this child and role in providing carePride, empowerment, and personal growth in achievements as caregiverIncreased empathy for othersIncreased closeness to family members

Parental roleConflict between role as parent and role as caregiverDifficult to switch from affectionate parent to technical/procedural careFoster parents face legal barriers to decision making and inadequate preparation for care provision

Working with HCPsChanged meaning of home when professional providers are always presentPresence of care providers constrained communication, affection, privacy, and disciplineNegotiations to clarify parental roles versus nursing roles can be difficultRole of parents and nurses in caregiving while child is hospitalized is unclear

Efforts to normalize family lifeParents strive to emphasize normal aspects of life and create stable routinesComplete normalization is prevented by ongoing demands, intrusiveness of equipment, and stigma

Impact on social relationships and activitiesIsolation occurs if parents unable to leave home due to care demandsDifficult for family members or babysitters to provide casual respite because of complex care needsStigma can constrain interactions with extended family, old friends, and strangersExcursions from home require extensive planning, and destination must provide appropriate environment andacceptance to allow for ongoing care needs

Moral implicationsParents aware of unfairness of their situationNo viable alternatives exist to home careParents would not choose to live without their childShifts of responsibility and expenses to parents and families may not be fully considered

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depression symptoms but did not affect those withhigher levels of depression symptoms.

Stress,worry, and fearwere also commonly reportedby parents of older children (Carnevale, Alexander,Davis, Rennick, & Troini, 2006; Miles, Holditch-Davis,Burchinal, & Nelson, 1999; Montagnino & Mauricio,2004). Parents were often overwhelmed in the earlystages of learning to care for a childwith complexneedsat home, but over time they often reported developinga routine and coming to recognize their own knowledgeand proficiency in providing care (Carnevale et al., 2006;Judson, 2004). In Montegnino and Mauricio’s (2004)study, parents reported both high levels of familydisruption and high levels of coping behaviors,including seeking community resources and acceptinghelp, reinforcing their ability to adapt.

Researchers described intense challenges thatparents experienced but recognized the rewards ofparenting a child with CCC as well. Parents identifiedpositive impacts of caring for their child at home,including a sense of personal growth, satisfaction,pride in their accomplishments in providing care,increased empathy, the opportunity to stay homeinstead of working, which benefited the family, andincreased personal strength, empowerment, and

resilience (Rehm, 2005a; Carnevale et al., 2006; Judson,2004; Reeves et al., 2006; Wang & Barnard, 2008).

Parental RoleIn a study using quantitative instruments and formalobservations, Lee et al. (2006) concluded that maternalinteractions with the infant were affected by maternal,infant, and environmental factors and that theychanged over time. This was corroborated byMcDonald and Callery (2007) who used ethnographicmethods and described evolving impacts of caregivingand needs of parents for respite care support, based onchanges in equipment and intrusiveness of care overtime as children grew. In a study examining theprocess of developing identity and competence asa mother, known as maternal role attainment (MRA),Holditch-Davis, Miles, Burchinal, and Goldman (2011)reported that mothers with lower role competenceand infants with more technology dependenceperceived their infants to be more vulnerable and childcues to be more difficult to read. Miles et al. (2011)found interrelationships of emotional impact andMRA, as mothers with less worry had higher maternalrole identity and those with less role stress had higherrole competence.


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Parents perceived that they served multiple roles: asparents,nurses,advocates,activists, educators,andcasemanagers in the lives of their technology-dependentchildren (Carnevale et al., 2006; Judson, 2004; Wang &Barnard, 2008). Kirk, Glendinning, and Callery (2005) re-ported that parents experienced significant conflict overtheir multiple roles. However, they defined themselvesprimarily as parents and framed their irreplaceablecontributions as residing in their unique emotionalconnection and individualized knowledge about thechild. Even if home health providers were frequentlypresent, theydescribed their owncareassuperior to thatof the professional caregivers because of their commit-ment to the child and their awareness of the conse-quences of makingmistakes.

Parenting a child dependent on technology was re-ported to be similar in many ways to caring for otherchildren, but parents perceived differences of greatertime demands, a need to planmore carefully tomanageequipment and procedures, and the need to step intosituations to compensate for things the child could notdo for themselves, such as solicit friendships with otherchildren (Rehm, 2005a; O’Brien&Wegner, 2002). Parentswere also reluctant to cause distress to their children;however, suchdistresswasoftenunavoidableasparentsperformed unpleasant or painful procedures, such assuctioning or tube feedings (Kirk et al., 2005).

Kuster, Badr, Chang, Wuerker, and Benjamin (2004)measured health promotion activities among motherscaring for a child dependent on a ventilator and foundthat mothers had low levels of nutritional self-care,exercise, relaxation, and general health promotion.Higher functional status of the child and higher levelsof coping were significant predictors of maternalhealth promotion.

In a unique study of foster parents rearing childrenwith CCC in rural areas, Lauver (2010) identified thatfoster parents, like biological parents, experiencedbeing overwhelmed when learning care and felt iso-lated in their homes. In addition, they faced challengesof making decisions under legal constraints, especiallywhen biological parents or courts retained decisionalauthority. Foster parents also described feeling stig-matized by HCPs who they perceived treated them asless involved or knowledgeable than biological parents.

Working With HCPsStresses of working with HCPs were commonly re-ported by parents (Rehm, 2005a; Carter, Cumming, &Cooper, 2007; Kirk et al., 2005; O’Brien & Wegner, 2002;Reeves, Timmons, & Dampier, 2006; Wang & Barnard,2004). When working with home care providers,parents reported feeling “invaded” (Rehm, 2005a, p. 816)and constrained in communications among familymembers, disciplining children, and finding privacy(Kirk et al., 2005). Parents described the need to trainhomeworkers, supervise their care, and oftennegotiatewith them about the unclear boundaries betweenproviding technical care and “childrearing” aspects ofcare such as discipline and moral education.

Relationships with HCPs were important, regardlessof location. Carter et al. (2007) investigated ways thatparents could work most effectively with multiplecommunity-based services and developed a set of bestpractices through a process that brought parents,service providers, and HCPs together to explore whatworks well and which practices need improvement.Reeves et al. (2006) found that relationships withnurses could also be stressful when children usuallycared for at home were hospitalized. She described theneed to negotiate and clarify assumptions duringhospital admissions when nurses might assume thatparents would do either all of the child’s care or none.Parents reported being reluctant to leave childrenunsupervised in the hospital because they were fearfulthat they could not be watched closely enough; yet,they did not always want to provide care themselves.Parents were disconcerted that nurses often lackedskills and experience in caring for children usingtechnology, and they wished that nurses had moreexperience and confidence when caring for their chil-dren. Judson (2004) found that some mothers of chil-dren dependent on parenteral nutrition became veryprotective as they developed their own expertise anddeveloped reluctance to trust others to provide expertcare, even their husbands or the child as they grew oldenough to assume responsibility.

NormalizationParents’ efforts to normalize their families’ daily lives bycreating stable routines and participating in typicalfamily activities were among the findings in severalstudies (Carnevale et al., 2006; Judson, 2004; O’Brien &Wegner, 2002). Normalization is characterized in thenursing literature as a positive family coping process inwhich chronic illness is placed in the background andfamilies think of their lives as normal (Deatrick, Knafl, &Murphy-Moore, 1999;Knafl,Darney,Gallo,&Angst, 2010;Morse,Wilson, & Penrod, 2000). Rehm (2005a) found thatparents of children with CCC did not think that theirlives were “normal,” compared with families withoutcontinuous care demands, and therefore, they could notachieve normalization as described in the literature, butthey did value typical and positive aspects of family lifeand strove to create routinewhere they could.McDonaldand Gibson (2010) related normalization to stigma andfound that parents used two strategies to maximizenormal aspects of life: keeping up appearances to helpchildren fit in and escaping daily care responsibilities byusing overnight respite care facilities.

Toly, Musil, and Carl (2012a) conducted a longitu-dinal, descriptive, correlational study to examine therelationship of normalization and other factors tofamily function. They found that maternal depressionexplained 35% of the variance in family function, butnormalization, caregiving duration, type of technologyused, and home nursing care hours were not predictiveof family function. However, when children were nolonger technology dependent by the second datacollection interval (12 months), family function and


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normalization were significantly improved. Theyidentified that, at baseline, 25% of the variance in levelsof normalization was explained by higher maternaldepression symptoms and poorer functional status ofthe child.

Impact on Social Relationships and ActivitiesSocial relationships and activities were often affectedby the need to care for children with CCC. Someparents felt trapped in the home by equipment orcomplicated care that was difficult to trust to others.Other restricting factors included lack of funding forrespite care, lack of qualified respite care providers, thefear of extended family members that prevented themfrom assisting in care for the child, and stigma relatedto a child’s appearance, behavior, or supportive tech-nology and care (Rehm, 2005a; Rehm, 2005b; Carnavaleet al., 2006; Judson, 2004; Kirk et al., 2005; Lauver, 2010;McDonald & Callery, 2007; McDonald & Gibson, 2010;Montagnino & Mauricio, 2004; Wang & Barnard, 2004).Rehm & Bradley (2005b) specifically studied the socialconsequences of raising a child with CCC. They foundthat social participation was affected by environ-mental factors, such as lack of appropriate equipmentor cleanliness in public environments or other people’shomes, children’s developmental and behavioraldifferences, and stigma related to lack of under-standing or tolerance for those differences. They foundthat parents sometimes found it easier to stay home orsplit the family so that one parent cared for the child athome and the other participated in activities withsiblings. Parents actively sought relationships andenvironments that welcomed the child regardless ofdifferences, and that allowed them to participate invisits or activities while simultaneously caring for thechild as necessary.

Moral Implications of Caring for Children With CCC atHomeCarnevale et al. (2006) identified parents’ moral distressas they cared for children dependent on ventilation athome. Parents recognized the unfairness of life and oftheir own situation, specifically. They felt that they didnot really have a free choice of whether to care for theirchildren at home because the alternatives of institu-tionalization or death were unacceptable to them. Incoming to terms with their decision to undertake thecare of the child on a ventilator at home, parents voicedtheir conviction that there were enrichments andrewards of this decision, as well as the burdens, andthey could not imagine living without their ventilatedchild. Carnevale et al. (2006) emphasize the moralimperative to provide sufficient services tosupport home care of CCC. Wang and Barnard (2004)pointed out that although caring for technology-dependent children at home saves on costs of hospi-talization and professional care, the financial andsocial costs to families have not been calculated andthat the cost of family labor is not figured into analysesof cost savings.

Discussion

Literature from medical colleagues about medicalhome services demonstrated improvements incommunity-based services for CSHCN over the pastdecade (CAHMI, 2012); however, the nursing researchreviewed in this article, from the years 2002 to 2012,reflects many of the same themes of parent and familystress for children with CCC identified in prior reviews(Harrigan et al., 2002; Ratliffe et al., 2002; Lindahl &Lindblad, 2011; Wang & Barnard, 2004). Unfortu-nately, there is little evidence that recommendationsfrom past reviewers for increased levels of casemanagement, respite care services, and mental healthsupports have been widely adopted or that the chal-lenges of caring for children with CCC have dissipated.Parents continued to report that caring for their chil-drenwith CCC causes worry, anxiety, social disruption,conflict with HCPs, and parental role conflict. This mayindicate that individual- and family-level services arenot consistently reaching parents.

It is clear, however, that nurse researchers havebrought important knowledge to light in the pastdecade and that many of the topics raised in pastreviews have been described in more depth, such asmaternal role development (Holditch-Davis et al., 2011;Miles et al., 2011), parental role conflicts (Judson, 2004;Wang & Barnard, 2008; Kirk et al., 2005), social conse-quences of home care (Rehm & Bradley, 2005b;Carnevale et al., 2006; Lauver, 2010), and the possibilityof normalization (Rehm & Bradley, 2005a; McDonald &Gibson, 2010; Toly et al., 2012a, 2012b). In addition,knowledge about the emotionally ambiguous experi-ences of parental caregivers’ lives that include bothmoral distress and rewards from caring for a child withCCC at home has been expanded (Carnevale et al., 2006;Wang & Barnard, 2004), raising important questionsabout the shift in responsibility from institutions toparents and the need for adequate services to makethis shift sustainable and ethical.

Mothers were the focus of most of the parentingliterature for children with CCC, and few studies thatspecifically addressed the experiences of fathers werelocated. The work of Lee et al. (2006) and Hobson andNoyes (2011) and those studies that included bothmothers and fathers demonstrated that fathers playa crucial role, and this could be a fruitful area of futureinquiry.

Gaps in Knowledge

Although the recurrentnational surveysofCSHCNhaveprovided invaluable information about the generalpopulation of these children, there is little specificdemographic information about children who haveCCC and their families, such as howmany children usewhich types of care strategies and technologies, whatlevel of home care services they receive,whohas access


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to resources such as home care nursing, and where thegaps in care and policy exist. More specific informationwouldhelp policymakers to allot resources andHCPs tocounsel families before the commitment is made tosendchildrenwithCCChome.Theupdateddefinitionofchildrenwith CCC proposed here can be useful to nurseresearchers who want to consider the holistic andfamily-centered needs of children who require skilled,continuous monitoring and care from parents andprofessionals,whomayuse technologyona temporary,intermittent, or continuous basis.

Despite the depth of knowledge about children withCCC and the demands on parents and families whocare for them at home, there is virtually no evidence inthe research literature of nursing interventions orpolicies aimed to facilitate care for these children ortheir families. There is a pressing need to develop andtest strategies to provide emotional support to parents,particularly mothers, who bear the brunt of caregivingresponsibility and who have been shown to have highlevels of depression and stress. There is a great need tofind those supports that would ameliorate the over-whelming responsibility of assuming care and learningthe intricacies when children go home from thehospital. Interventions are also needed to teachparents, especially mothers, and home care providers,how to work together to support the child with CCCwhile protecting family privacy, enhancing profes-sionalism, and clarifying roles of parents and profes-sional care providers. The positive outcomes of careprovision may provide some clues for how to addresssome of the challenges outlined in this review, drawingupon parents’ feelings of commitment to their childrenand sense of pride and mastery as they developcompetence in home care provision (Rehm & Bradley,2005a; Carnavale et al., 2006; Judson, 2004; Reeves,Timmons, & Dampier, 2006; Wang & Barnard, 2008).

Furthermore, the themes apparent in this reviewprovidemultiple targets for interventions to potentiallyimprove families’ lives through stress reduction,learning to work with HCPs in home and hospitalsettings, facilitating normalization, and decreasingsocial stress and isolation. Although this reviewmakesclear that many parents find satisfaction in caring fortheir childrenwith CCC at home, nurses arewell suited,through their holistic appreciation of the demands ofproviding this care, to address these demands bysystematic development and testing of nursing inter-ventions and public advocacy for sufficient supportiveservices for children with CCC and their families.

Conclusion

In summary, children with CCC are an importantsubpopulation of CSHCN, whose care depends onparents who are willing and able to provide care athome that will allow them to develop to their fullpotential and facilitate familial relationships. Nurses

have made valuable contributions to understandingparents, particularlymothers’ experiences in providingcare to children with CCC at home. Findings havepointed to multiple needs for nursing support toimprove the lives of children and families in emotional,social, and physical realms.

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nursing's contribution to research about parenting children with complex chronic conditions:...

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