caring for children with complex needs

Hewitt-Taylor J (2005) Caring for children with complex and continuing health needs. Nursing Standard. 19, 42, 41-47. Date of acceptance: November 15 2004.

SummaryAdvances in medicine and technology mean that more children cansurvive with complex and continuing health problems. These childrenhave specific needs that healthcare professionals should considerwhen providing and planning care. This article discusses home careprovision, equipment and funding as well as family support needs.

AuthorJaqui Hewitt-Taylor is practice development fellow, the Institute ofHealth and Community Studies, Bournemouth University. Email: [email protected]

KeywordsChildren: disabilities; Community paediatric nursingThese keywords are based on the subject headings from the BritishNursing Index. This article has been subject to double-blind review.For related articles and author guidelines visit our online archive atwww.nursing-standard.co.uk and search using the keywords.

intermittent respiratory support but have noassociated disabilities, while others have multipledisabilities requiring constant supervision andmore than one type of intervention or assistance.

It is likely that, as the population of childrenwith complex and continuing health needscontinues to grow, nurses in a variety of areas willprovide care for them and their families. Thisincludes paediatric nurses working in hospitals,those providing care in the community, practicenurses, school nurses and health visitors. Whenthese children reach adolescence their care will betransferred to the adult sector. Thus, nursesworking in paediatric and adult services are likelyto need to have an awareness of the needs of thisgroup of patients.

This article presents an overview of some ofthe major considerations in the care of childrenwith complex and continuing health needs interms of care provision and family support.Although the article focuses on dischargeplanning and establishing home care, this care isoften likely to be required for many years andequal attention should be given to maintaining it.

Care provision

One of the major issues for families andhealthcare providers is where children withcomplex and continuing health needs should becared for. The type of interventions andequipment used would traditionally haverequired hospitalisation. Where this includesassisted ventilation it would have meant care wasprovided in an intensive care setting (Lumeng et

al 1999, Kirk and Glendinning 2002). However,in long-term situations it is consideredinappropriate for children to be cared for inhospitals and, in particular, in intensive careunits (ICUs) because their developmental and

DEVELOPMENTS IN medicine and technologymean that an increasing number of childrensurvive with health problems that require long-term medical and technical interventions. TheDepartment of Health (DH) (1997) identifies theneeds of this population.

It is difficult to determine the exact number ofchildren requiring long-term specialist health carebecause these children are an extremely diversegroup (Glendinning and Kirk 2000). The broaddescription of children with complex andcontinuing health needs includes children withtracheostomies, those who require long-termassisted ventilation (constant positive airwaypressure, bilevel positive airway pressure and/oroxygen therapy), assisted enteral or parenteralfeeding, and the administration of intravenousdrugs, and may include children with severemovement disorders or mobility limitations.Some of the children in this group require

Caring for children with complexand continuing health needs

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psychosocial needs are unlikely to be met in thisenvironment (Neufeld et al 2001).

ICUs necessarily focus on preserving life andstabilising children during acute illnesses. It isinevitable that children in ICUs who requirelong-term ventilation, but who are otherwisemedically stable, are exposed to over or under-stimulation and lack of normal developmentalexperiences (Boosfeld and O’Toole 2000).

Even outside the intensive care environment, anacute hospital is an inappropriate place forchildren to grow up in for educational,psychological and social reasons. The increase inthe number of children requiring complextechnological or medical interventions has beenaccompanied by recognition that, whereverpossible, children should be cared for at home sothat their psychological, developmental and socialneeds are met (NHS Executive (NHSE) 1997): thisincludes chronically ill children (Balling andMcCubbin 2001, Neufeld et al 2001). Appierto et

al (2002) suggest that when children with complexand continuing health needs are cared for at hometheir physical, psychosocial and developmentaloutcomes are improved, and that this is a morecost-effective option for the NHS.

In addition, Taylor (2000) suggests thatparents are generally provided with betterinformation about their children when their careis provided outside the hospital environment. Inhospital, the power ratio favours healthcarestaff, and parents can be considered as visitors inan unfamiliar environment. This situation isreversed in the family home, as healthcare staffare the visitors. Enabling parents to provide carefor their child at home may assist in empoweringthem and promote greater autonomy in decision-making about the child.

Barriers to home care

Despite the benefits of home care for childrenwith complex needs, its provision is often besetwith problems (NHSE 1997). Noyes (2002)found that nearly all the young people theystudied requiring long-term assisted ventilation,spent significant periods of time in hospital whenthey did not want, or have, a medical need to bethere. A variety of factors delay children withcomplex needs being discharged from hospital.These include the time taken for planning and thepriority given to this by healthcare staff andmanagement, staffing and funding issues in thehealth service, lack of collaboration betweenservices, and social and financial issues forindividual families (Jardine et al 1999, Noyes

2002). It is essential to consider these factors toprovide appropriate high-quality care.

Liaison and planning

Planning discharge from hospital of childrenwith complex needs is time-consuming andrequires ongoing liaison between hospital andcommunity staff. This can become low priority ina busy work environment and, despite thedesirability of care at home, the practicalities ofdischarge may take time. The major issues to beconsidered are summarised in Box 1.

Where children with complex needs are caredfor in the family home their parents often providethe type of care that would usually be the domainof professionals (Kirk 2001). The developmentof the skills, knowledge and confidence to enableparents to provide such care requiresconsiderable training and support (Boosfeld andO’Toole 2000). This should include visits to thehome by health professionals to accustomparents to caring for their child at home, and toidentify and address practical problems beforethe child is discharged from hospital. Preparationfor discharge home also requires liaison betweenservices to prevent inconsistencies in serviceprovision. For example, if services are not co-ordinated, families may be provided withequipment that is different from that which theyhave been taught to use in the hospital, or itemsprescribed in hospital may not be available in thecommunity. Given the range of services that willbe involved in supporting such families,teamwork is essential for discharge planning andongoing care to proceed smoothly.

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&art & science community nursing

�Promote liaison between hospital andcommunity

�Organise adjustments to accommodation

�Teach parents and carers practical skills

�Discuss psychological and emotional issueswith family

�Develop communication between services

�Promote communication within the multidisciplinary team

�Organise equipment and supplies

�Plan ongoing health and social careappointments

�Consider the effects on all family membersand the support available

BOX 1

Preparation for home care before discharge

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A part of preparation for discharge should beenabling parents to cope with the psychologicalaspects of performing medical tasks on theirchildren. Glendinning and Kirk (2000) found thatthis aspect of care is often overlooked, with thefocus being on providing physical and technicalcare. Wilson et al (1998) identify the potentialconflict in the nurturing and protecting role ofparents because they may induce suffering whenadministering uncomfortable healthcaretreatment to their children. Preparation for careat home and support in ongoing care should allowparents to identify and express their feelingsabout providing what may include invasive carefor the child, for example, changing tracheostomytubes or suctioning an artificial airway.

Once the child is home, a lack of co-ordination between services can overwhelmparents with visits from different professionals,and what may be perceived as an unnecessarydegree of infringement on their privacy. Theremit of professionals’ distinct roles may notalways be clear to parents. If communicationappears to be poor, parents may feel that they arethe only liaison between services and individuals,which does little to add to their confidence in theservice (Glendinning and Kirk 2000). However,Glendinning and Kirk (2000) found that theprofessional groups feel they work well togetherand value each other’s contributions.

Co-ordination of services could take place inteams which include clinical nurse specialists,community children’s nurses, generalist healthvisitors and district nurses. Information can beshared between those who have knowledge oflocal resources with specialists who have covereda wider region, while specialists can assist generalstaff with information about specific disordersand interventions. This interaction of individualsand services providing specific input andinformation, and supporting one another inproviding care to the family would be ideal.Families could also receive explanations of thenecessity for multidisciplinary involvement topromote confidence that individual services areworking in a co-ordinated manner.

The Children’s National Service Framework(NSF) (DH 2004) specifies that appointmentsshould be planned to minimise disruption tofamily life. This includes planning appointmentsas well as visits to the home. Despite thesuggestion for more flexibility in the timing ofhealthcare appointments (DH 1997) this is notalways a reality, and attending a range ofappointments can add to the burden of care forparents. One problem may be that there is nooverall co-ordination because appointments areusually in different departments. Such difficultiesshould be considered when arranging the timingand location of appointments.

Equipment and funding

It has been suggested that caring for children withlong-term complex and continuing needs in anacute hospital setting is an inappropriate use ofresources (Boosfeld and O’Toole 2000). However,once the child is discharged from hospital, thecommunity trust in the child’s home area is usuallyrequired to provide equipment, consumables andnursing support (Glendinning and Kirk 2000).Prescribing costs shift to the local GP or primarycare organisation and local authorities have toprovide support in the child’s home and school.

Parents and community nursing staff havereported disputes between specialist hospitals,community health services and GPs, and betweendirectorates in the same trust over funding(Glendinning and Kirk 2000). This may befrustrating for staff, and stressful for familieswhere ongoing access to services or equipment isdelayed or complicated by these issues. TheChildren’s NSF (DH 2004) identifies the need forsuch practicalities to be addressed. Ideally,funding for all aspects of care should be agreedbefore discharge home, and made explicit to allconcerned. Exactly who is responsible varies butthere should be an identified named co-ordinator,often a nurse on the ward or unit from which thechild is being discharged.

Obtaining equipment and supplies has beenidentified as a significant stress factor for families(DH 2004). Supplies are sometimes unreliableand difficult to obtain, with parents having totravel, sometimes at short notice, to a specialisthospital some distance away. Given the problemsof organising even short journeys from the homewhen a child with complex needs is involved, thisis a major undertaking. Collecting bulky suppliescan incur considerable costs and inconveniencefor families, even when the collection point isnearby. In cases where a child’s condition isunpredictable, accurate estimation of needs canbe impossible, which suppliers may notunderstand. For example, it might be impossibleto accurately specify how many suction catheterswill be needed for a child who has a tracheostomyand also has frequent respiratory tract infections.

All of these factors add considerably to thestresses involved in the provision of home carefor children with complex needs. The Children’sNSF (DH 2004) identifies that supply ofequipment and consumables should be organisedto minimise disruption and that bulky suppliesshould be delivered directly to families.

Although Appierto et al (2002) identify care athome as the most cost effective option for suchchildren, it may shift the financial burden from theNHS to the family (Wilson et al 1998, O’Brien andWegner 2002). The cost to the family, in financialand emotional terms, is potentially high and may


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be a burden that cannot be accommodatedwithout significant support. Although thepracticalities of care already described are vital tosmooth functioning and reduction of stress forfamilies, education for healthcare staff about theemotional wellbeing of family members caring fora child with complex needs at home is essential insupporting the family.

Effects on the family

Wilson et al (1998) suggest that caring for a childwith complex needs at home requires absoluteinvolvement from parents in terms of acceptingresponsibility, refusing to give up, problemsolving, decision-making, learning, teaching,managing and co-ordinating. All of these occurin the context of the child’s illness, but also in thecontext of other aspects of family life.

The aim of caring for a child with complexneeds at home is to create a safe environmentwith the least possible disruption to normal life(Boosfeld and O’Toole 2000). There are manyfactors which may disrupt the family’sfunctioning. Unlike healthcare staff, familieshave no time off duty, and their homes aredisrupted by medical equipment, disturbed sleep,and visits from a range of healthcareprofessionals (Glendinning and Kirk 2000).Parents have to learn about medical andtechnical aspects of care, make many difficultadjustments to their everyday life andaccommodate the child’s needs within numerousaspects of family life and relationships (Aday andWegener 1998, O’Brien 2001).

Housing adjustments may be necessary, whichaffect the whole family, particularly whererelocation is involved. Glendinning and Kirk(2000) found that holidays require extensiveplanning and are often taken near a regionalcentre hospital in case of the need for medicalhelp. However, even more day-to-day tasks, suchas taking siblings to out-of-school activities, andmeeting with friends is likely to be problematic.Disruption at every level may be more than afamily can accommodate. Decisions on the bestplace to care for children with complex needsinvolves seeing the family as a whole, andconsidering the impact on all members.

Incorporating the needs of all family membersin decision-making means that ethical debatesmust take into account the needs of the child andthe family. Ethical decision-making is complex inall healthcare situations, but particularly indecisions about care for children with complexand continuing health needs. The principles of

beneficence and non-maleficence (Fletcher andBuka 1999) should take into consideration whowill benefit, and whose benefit is the mostimportant: the benefit to the child, their siblings ortheir parents? For example, although the child’swellbeing is paramount, every child’s wellbeing,including that of siblings, must be considered. Theprinciple of utilitarianism (greatest good for thegreatest number as a guiding principle) (Draperand Sorell 2002) is also a consideration in ethicaldebates and, in this case, will mean that issuesbeyond the child and the immediate family mayneed to be taken into account.

Families’ existing social support networksmay be significantly altered when they care for achild with complex needs at home. For example,at least one parent is unlikely to return to work.This may mean loss of friends, loss of commonground or experience with friends and the needto create new social networks at a time when theneed for support is high. It may also impact onparents’ sense of identity, for example, if theircareer pathway is unexpectedly terminated.These factors should be considered in planningthe care of a child with complex needs, and inproviding them with ongoing care and support.

Wilson et al (1998) suggest that the copingstrategies that parents adopt in caring for a childwith complex needs include adjusting to thechild’s limitations and the resultant need to altertheir expectations. The authors describe the needto reframe time, often concentrating on thepresent or near future to enable parents to hopefor progress, and to reduce the threat associatedwith uncertainty. It may appear that families donot accept the child’s long-term prognosis orlikely progress. However, what may appear to bean unrealistic expectation may be a part of acoping strategy that enables parents to continueto care for their child. A summary of the mainissues faced by families of children with complexand continuing health needs is provided in Box 2.

Siblings

It has been suggested that having a brother orsister who is chronically ill may have an adverseeffect on siblings, for example, by parents havingless time to spend with them than would be thecase for a child whose brother or sister did nothave complex needs. Sharpe and Rossiter’s(2002) meta-analysis shows that siblings ofchildren with a chronic illness experience somenegative effects compared with those who do nothave a chronically ill sibling. They also foundthat illnesses which necessitate daily treatmentregimens are more strongly associated withnegative effects on siblings than those that donot. Most children with complex and continuinghealth needs will require daily treatment of some



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kind, and the potential for adverse effects onsiblings is highly relevant to this group. Concernsabout adverse effects on healthy siblings can addto parental stress (Taylor et al 2001). Therefore,it is useful for nurses to be aware of possibleeffects on siblings and to support and adviseparents appropriately. Taylor et al (2001) foundthat emotional symptoms and psychopathologywere not related to type or severity of illness orprognosis, but to whether the sibling hadexperienced an acute episode of illness in the pastsix months. These findings may give healthcareprofessionals and families some guidance aboutthe times when siblings are most likely to requireadditional support and emotional input.

Williams (1997) and Taylor et al (2001) foundthat well siblings’ knowledge about their brotheror sister’s illness, their attitude towards theillness, adjustment to it, their own self-esteem,and feelings of social support, including theirmother’s awareness of their feelings, wereinterrelated and related to their adjustment. Forexample, understanding why their brother orsister requires assisted ventilation, and why theyneed the equipment and care that they do, canaffect how a child feels about their sibling’s needsand the effect this has on their life.

This suggests that healthcare staff andfamilies should consider developing siblings’knowledge of their brother or sister’s illness,and that exploring their attitudes and feelingsand enabling them to gain appropriate socialsupport is likely to be beneficial. Taylor et al

(2001) also found that adjustment isdetermined by the affect that the child’s illnesshas on family functioning, and the degree ofmaternal emotional distress resulting from thisand siblings’ relationships with adults otherthan their parents.

Despite the risk of adverse effects, Taylor et

al’s (2001) study showed that, although siblingsof children with chronic health problems had asignificantly increased risk of experiencingemotional problems compared with the generalpopulation, the great majority had levels ofadjustment in the normal range. It is clear thatthe experience of having a chronically sick siblingis affected by a number of factors, but also thatadverse effects are not inevitable. Healthcareprofessionals should be able to identify andreassure parents about this as well as supportingthem in caring for the family unit as whole.

Caring for experts

The parents of children with complex needs areoften more knowledgeable about thepracticalities of their child’s care, and associateddisease processes, than many healthcareprofessionals. Expert patients are frequently

involved in teaching professionals (DH 2001)and while the DH document focuses on adults,and does not specifically discuss children withcomplex needs and their families, the principleapplies equally to them because they are expertsin their care.

Glendinning and Kirk (2000) found thatfamily members regularly perform procedures,such as changing tracheostomy tubes andinitiating and supervising assisted ventilation,which are outside the knowledge or experience ofsome healthcare staff. Parents also becomeexperts in monitoring their child’s condition andare often able to detect changes earlier thanprofessionals, using intuition and knowledge ofthe child rather than measurable tests(Glendinning and Kirk 2000).

Although redressing parents’ power in relationto healthcare staff is in keeping with the ideal ofpatient empowerment that is central to nursing(Royal College of Nursing 2003), this can bedaunting for staff. Glendinning and Kirk (2000)found that some professionals feel threatened by‘expert parents’ and some parents felt thatprofessionals avoided them for this reason.

TheExpert Patient (DH 2001) recommendsthat expertise should be shared between healthcareprofessionals and patients, with patients havingexpertise in their illness, social circumstances,attitudes to risk, values and preferences, andhealthcare professionals having expertise in


�Changes to housing

�Constant supervision can make other basic activities difficult tocarry out

�Effects on siblings – relationship with parents, disruption tosiblings’ lifestyle, emotional and psychological responses tobrother or sister with long-term care needs

�Employment and self-identity of family are likely to alterradically

�Existing support networks may be altered significantly

�Healthcare professionals’ visits interrupt family life

�Holidays affected

�Interrupted sleep

�Medical and technical care as well as childcare must beincorporated into daily life

�Need to reframe time and expectations of child and self

�Parents’ relationships with partner and other children affected

�Unpredictable needs: difficult to plan activities

BOX 2

Effects on families of children with complex and continuinghealth needs

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diagnosis, disease processes, prognosis, treatmentoptions and outcome probabilities.

Families of children with complex needs areoften well informed about treatment options andthe practicalities of medical care, as well aspersonal aspects of chronic illness. This may makeencounters between families and professionals lessclear-cut in terms of areas of specialism, and morethreatening to professionals, because differencesin knowledge provide a basis from which parentscan challenge professionals (Glendinning and Kirk2000). Shaw and Baker (2004) identify that manymedical staff appear to view expert patients asdemanding and unreasonable, and that theinformation they present about treatment optionsmay be of limited value.

A challenge for professionals is to work inpartnership with families, sharing knowledgeskills and resources, and being able to discusssources of information, the benefits of treatmentand limitations. Donaldson (2003) suggests thatthis requires changes in attitudes and modes ofinteraction by healthcare professionals andpatients. Kennedy (2003) states that polarpositions, where patients are seen as passiverecipients of care or where professionals areviewed as being there to take orders, should be

avoided. Instead, meaningful dialogue andpooling of information is the key. This balance isnot easy to achieve and requires consistentnegotiation, effort and honesty on both sides. Theissues raised in each situation vary, but theprincipal challenges for healthcare professionalsrelate to parents’ knowledge of the child, thechild’s disease/disorder, current treatment optionsand ongoing treatment, power issues, working inthe home environment, negotiating medical andtechnical care, and negotiation related tochildcare and professionals’ role in the family.

Support for parents

Providing ongoing care for a child with complexneeds can be exhausting. The Children’s NSF(DH 2004) recommends provision ofappropriate support for families, not only intimes of crisis, but on a day-to-day basis.However, the practicality of providing suchsupport requires decisions on where to providethe support and who should provide it.

One option is full-time nursing in the familyhome. This has advantages, but also intrudes on afamily whose lifestyle is already disrupted (Adayand Wegener 1998, Baumgardner and Burtea1998, Valkenier et al 2002). In cases where full-time support is required negotiation betweenhealthcare providers and the family is a key aspectof providing support (Graves and Hayes 1996).



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This includes negotiation of roles andresponsibilities for medical procedures, as well asnegotiation of non-medical aspects of care, such aschild rearing expectations, and relationshipsbetween carers and the family (O’Brien andWegner 2002). In cases where health professionalsare not providing full-time assistance, some of theabove considerations still apply.

In addition to providing day-to-day support,respite care is an important resource for families(Neufeld et al 2001, Olsen and Maslin-Prothero2001). However, obtaining suitable respite caremay be problematic for families Robinson et al

(2001) and Neufeld et al (2001). Jardine et al

(1999) found that only 17 per cent of familiesproviding care for a child requiring assistedventilation had respite care in place. Olsen andMaslin-Prothero (2001) identify the problem ofobtaining respite care at short notice. Whererespite is provided is also an issue. The ideallocation is one that the family chooses, but inreality this may not be easy to achieve. Optimumcare provision requires negotiation betweenservices so that the child’s and family’s needs aremet appropriately.

Conclusion

The number of children and young people whorequire ongoing medical and technicalinterventions is likely to increase (DH 1997).

Nurses need to be aware of the physicalrequirements of children with complex andcontinuing healthcare needs, as well aspsychosocial and developmental needs and theneeds of the family as whole. Ethical andmanagement issues that affect care also need tobe considered.

Nurses in a variety of fields will be engagedin caring for children with complex needs andtheir families, and should be aware of the rangeof issues involved in planning and deliveringcare. This includes planning to facilitatelong-term care in the most appropriate setting,multi-disciplinary liaison, liaison betweenprimary care and acute hospital settings,negotiation of roles and responsibilities, andsharing knowledge and skills with parents.

Caring for children of ‘expert parents’ canbe daunting, and the skills needed to develop agood working relationship with parentsinclude communication skills and confidence.It is important to promote meaningful debateand informed discussions on the options forcare so that all those involved can contribute.

Caring for children with complex andcontinuing health needs is an area of nursingcare that requires a unique and specific mix ofmedical and technical skills and knowledge,organisational, interpersonal and negotiationskills and the ability to care for children andtheir families in diverse circumstances NS


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caring for children with complex needs

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