Fam ily-Centred Care in Paediatric and Neonatal Nursing-A Literature Review

A literature review of family-centred care in paediatric and neonatal nursing was undertaken as part of a research project. This research intended to ascertain the knowledge and attitudes of paediatric and neonatal qualified nurses and nurse educators towards family-centred care as it pertains to infants and children in hospitals in the Gauteng Province. A definition of family-centred care is difficult to formulate mainly due to the lack of consensus about its meaning. Addi­ tionally, the diverse societal contexts within which family-centred care is applied further complicate its definition. Inter­ nationally in developed countries, family-centred care is viewed as care, which is parent-led in consultation with the nurse practitioner. A family-centred care model for the South African context needs to be developed with the focus on parent participation, a precursor of family-centred care. This article traces the early developments in parental care for hospitalised children with specific reference to the USA, the UK and South Africa. Precursor concepts in family-centred care are described followed by a cursory overview of the reality of family-centred care, its cultural dimensions and matters of family strengths and choices in family-centred care.


Introduction
Family-centred care is being explored overseas as care that is parent-led with the nurse acting as a consultant or counsel lor, fostering open, honest dialogue with the family, especially with the parents in the case o f fam ily-centred paediatric and neonatal nursing.The family is acknowledged as experts in the care of their child and their knowledge and skills are re spected.Since no literature could be found on the early de velopm ents in parental care for hospitalised children and minimal literature on the developm ent of fam ily-centred care for infants and children in South Africa, mainly overseas lit erature sources were consulted.This is unfortunate, as families have evolved differently in developed and culturally distinctive (predominantly Anglo-Saxon) societies such as the USA or the UK in com parison to South Africa, which comprises families representing both first and third world countries' fam ilies.M ost o f the literature sources were drawn from these two countries.The dearth of literature on family-centred practices in hospitals in develop ing countries could be explained by the trend in recent dec ades towards home-based care.As developing countries have fewer resources, the advent o f Primary Health Care (PHC) with its emphasis on hom e-based care has been welcomed with enthusiasm.In the case o f paediatric and neonatal care, many patients however, may require hospitalisation.Hence the involvement of families in the care of their hospitalised children is essential to facilitate continued care for their chil dren at home.
Early developments in parental care for hospitalised children Brewis (1986:34) states that "in years gone by parents relin quished responsibility for their child at the ward doors (if not before): a fa it accompli.The child became the jealous prop erty of the nurses and doctors, with access by parents being tolerated weekly, eventually daily, but usually grudgingly."In contrast however, as early as the m id-1700's, dispensaries existed, which gave advice and medicine to parents who con sulted them .The first o f these w as opened by G eorge Armstrong, a distinguished physician who believed that chil dren should not be separated from their parents by admission to hospital, claiming prophetically that, "the mothers and the nurses would be constantly at variance with each other"(Miles in Darbyshire, 1993Darbyshire, : 1671)).This author also stated that tak ing a sick child away from its parents, or equivalent substi tute, "breaks its heart immediately" (Burgess, 1988:70).There was, therefore, recognition that physical separation of a child from the parent or carer has serious psychological im plica tions for the child.The predom inance of infectious diseases and fatal illnesses created a rigid hospital environment based on strict asepsis and routine.This system was to affect the relationships be tween hospital staff, children and parents for over a century and is still apparent today (Darbyshire, 1993).According to D arbyshire (1993According to D arbyshire ( :1671)), "the ethos of child care within the paediatric hospitals was not shaped solely by physical and epidemiological factors."The child-rearing ideologies of the early twentieth century further fostered a mechanistic and regi-

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Curationis August 2002 merited care by its emphasis on a cold, detached relationship with children.Research over the last 50 years has shown the detrimental effect on children o f separation from their parents during hospitalisation.A major influence in changing attitudes to wards the care of children in the 1950's, was the work of John Bowlby and later, Jam es Robertson (Swanwick, 1983).John Bowlby, a child psychiatrist, was an appointed mental health consultant at to the World Health Organisation (WHO) in 1950.In a book written while in this post, he expressed the belief that a warm, intimate and continuous relationship with the mother or person who steadily mothers, is essential for the mental health of the infant and young child.He con tinued by saying that it is this complex and rewarding rela tionship in the early years, varied in countless ways by rela tions with the father, brothers and sisters, that child psychia trists and many others now believe to underlie the develop ment of character and mental health.These views were ex tremely controversial; com plete strangers were nursing chil dren and visiting in hospitals by family was usually very re stricted (Swanwick, 1983).James Robertson, a psychoana lyst, film m aker and cam paigner revealed in his studies of children before, during and after hospital adm ission, that children experience 'separation anxiety,' evidenced by three identifiable stages: initially protest at being deserted; despair when their protestations are fruitless; and finally denial, lead ing to depression and withdrawal (Palmer, 1993;Swanwick, 1983).

United Kingdom
As evidence of numerous studies grew, pressure mounted for a ch an g e in attitu d es tow ard s the care o f sick children (Swanwick, 1983).In 1956, the Platt Committee was set up to make a special study o f the arrangements made in hospi tals for the welfare of sick children (Swanwick, 1983).The Platt report (The Welfare o f Children in Hospital, The M inis try o f Health and Central Health Services Council, 1959) was published in 1959 and was revolutionary in its recom m enda tions (Darbyshire, 1993).It highlighted the fact that the hos pital is a 'strange environm ent' for a child and the circum stances such, that children are likely to experience pain and distress.It advocated respect for the authority o f parents in handling their child and encouraged admission of the mother with the child to hospital.W herever possible, home-based care was prom oted as a preferred alternative to hospitalisa tion.The report also advocated that children's nurses should be specifically trained to care for children and that children should be nursed in an environm ent supportive o f complete child developm ent.Those campaigning and concerned for the welfare o f children in hospital enthusiastically welcomed the report.(Darbyshire, 1993;Swanwick, 1983).However, the im plem entation of the Platt report's recom m endations was very slow (Palmer, 1993). Hall (1978) argued that this "was due to the fact that the report had considered only psycho logical theory, that is, m other-child separation.The report had ignored the wider sociological implications of hospitals as institutions, and the difficulty inherent in effecting change within them.Hall (1978) also argued that having parents in the ward as visitors or residents, created resistance from staff who did not accept that parents should be there (Darbyshire, 1993(Darbyshire, : 1672)).Staff still needed to be convinced by the evi dence that parental presence with ill children is a good prac tice.

United States of America
In 1967 only 28 of the 5000 general hospitals in the United States had facilities for parents to spend the night with their child.Despite the recommendation of the American Acad emy of Paediatrics in 1971 that hospitals should provide fa cilities to promote the well being o f both the parents and the child (Hardgrove & Roberts, 1989), the USA lagged behind many countries in such provisions.A study conducted in 1978 (Hardgrove & Roberts, 1989) identified a gap between re search-based rationale encouraging parents to stay with their child and the style o f im plem enting 'living-in' programs.Results of the survey indicated that institutional support of parental presence was, for the most part, confined to provid ing accommodation for parents of children who had been ad mitted.Few hospitals provided services for psychological and family support or helped with parent-to-parent peer support groups.In contrast to the UK however, there is no national policy requiring a certain number of parent beds for every childbed on the unit, and there is no general policy granting sick leave to working parents when a child is ill or hospital ised.Despite the lack of national policy it would appear that the Association for the Care of Children in Hospitals, founded by educationalists in 1967, has been instrumental in the fur ther development of parental care for hospitalised children in the USA.

South Africa
The plethora o f research from the UK and USA on familycentred care, the work of associations to promote fam ily-cen tred care and a separate register for children's nurses to safe guard their special training needs, indicate a commitment at every level in these countries to making family-centred care a reality.In contrast, there is a paucity o f research in South Africa pertaining to the care of hospitalised children by the family.Orr (1994) highlighted the plight of children in hos pital in this country, by suggesting that many hospitals in South Africa have made little attempt to humanizx the stay of young children.She concluded that many nursing and medi cal personnel in South Africa have either not taken cogni sance of the published research or have alternatively, not been convinced of its relevance.A thorough search o f the South African nursing literature was conducted.Bonn (1994), Pillay & Pillay (1988) and Rangaka, Rose & Richter (1993) addressed the emotional impact o f paediatric hospitalisation but in only two articles (Leary, 1973;Lerwill, 1983), were the needs of the South African child in hospital addressed directly.Leary (1973) observed that the vast majority of the hospital child popula tion in South Africa is poor and 'non-w hite.'The present situation is no different.Leary (1973) remarked that as the children's physical needs are generally being better catered for in hospital with visible improvement in their condition, psychological needs are often overlooked.He concluded that these children also suffer separation anxiety and therefore their psychological needs should be addressed.(Leary, 1973).Lerw ill (1983) discussed a pre-hospital preparation pro gramme in place at an academic hospital in Johannesburg.Fam ily-centred care policies were also m entioned and ap peared quite restrictive; it referred to "rooming-in" facilities for mothers o f children during long-term hospitalisation and the allowance of siblings with "special consideration" .Since 29 Curationis August 2002 then several legislative docum ents have been passed recog nising the rights of the child in South Africa, yet the voices of children, parents, families, health care providers and health care workers remain silent.a degree o f control by the nurse and a positive engagement in selective intellectual and/or physical activities by the family during some o f the phases of the health care process (Cahill, 1996).

Evolution of concepts in fam ilycentred care
The significance of fam ily-centred care will never demise, as long as society recognises the fam ily as pivotal to the growth and developm ent of its members.Current global political, economic and socio-cultural patterns do not always support this prem ise although it is the ideal.However, the growing body of literature on fam ily-centred care and the commitment by m any governments to uphold the rights of children and their fam ilies indicate that fam ily-centred care is valued and should be striven for in every hum an service discipline.
Nurse researchers and educators have become involved in theory developm ent and concept analysis of this "very illdescribed and am orphous" concept that has evolved over the years (Darbyshire, 1993(Darbyshire, :1672)).If fam ily-centred care is to strengthen families and to advance the knowledge and prac tice of paediatric and neonatal nursing, it is vital that the concept is properly understood.Authors have used various models of concept analysis and concept development to ana lyse family-centred care and its related concepts (Nethercott, 1993;Cahill, 1996;Coyne, 1996;Hutchfield, 1999).Cahill (1996) suggests that there is a hierarchical relation ship between the concepts o f patient involvem ent and col laboration, which is a precursor to patient participation, which in turn is the precursor to patient partnership.In paediatric nursing, one could substitute "patient" involvement with terms such as collaboration, participation and partnership with "par ent", as the child is not capable of self-care and requires a substitute self-care agent (Orem, 1985).In discussing the re lated concepts of involvement, collaboration, participation and partnership the term "patient" has been substituted by "par ent" .

Parent involvement and collaboration
Several authors have confused the arena of nursing children with their families by using the terminology of involvement, collaboration, participation and partnership synonymously (Cahill, 1996).Patient/parent involvem ent is considered to be a one-way process as the patient's voice is mostly ignored.A narrowing o f the knowledge gap between the parent and the nurse is not required, as activities are undertaken in the form o f basic delegated tasks.These tasks do not extend to com plex intellectual activities such as decision-m aking.(Cahill, 1996).Parent collaboration implies joint involve ment in intellectual activities for the purpose of decision making and is a co-operative endeavour between the parent and the nurse (Cahill, 1996).Like parent participation, it seeks to improve working relationships and patient outcomes, although parent participation is a more comprehensive defi nition of a relationship with another.Participation requires a narrowing of the appropriate knowledge and/or competence gap between the nurse and parent.It requires surrendering of

Parent participation
Coyne (1996) explores the historical development and evolu tion of parent participation, as he believes it best encompasses the current evidence on family-centred care practice referred to in the literature.From a review of the American and Ca nadian literature, the description and developm ent of the con cept has evolved differently from what has been described in the British literature (Coyne, 1996).This is not surprising considering the cultural differences between the two health care systems, and the influence of socialisation and repeated interaction on the development of a concept (Coyne, 1996).Studies by Webb, Hull & Madeley (1985) and Keane, Garralda & Keen (1986) concluded that parent participation was being practiced because parents were involved in performing tasks for their children in hospital.Parent participation is not about whether parents are competent to perform tasks or not but whether there is willingness on the part o f parents to perform these tasks or on the part of nurses to teach parents these tasks or procedures.These studies, however, did not explore the meaning of the participation for the parents (Callery & Smith, 1991;Coyne, 1996;Darbyshire, 1994).
No concept analysis of family-centred care and its precursors could be found in the South African literature.Reflecting on the impact of the cultural differences between health care sys tems in the UK and the USA on the evolution o f the concept, the need to explore a definition of fam ily-centred care that is unique to the South African political and socio-cultural con text, was considered to be important.

Parent partnership
In Cahill's (1996) concept analysis o f patient (substitute par ent) participation, parent participation is a precursor to par ent partnership in the hierarchical order o f related concepts.In 1988 Casey viewed parent participation in terms of part nership with parents, and developed the "partnership model of paediatric nursing" (Coyne, 1996).Parent partnership is not unlike parent participation in that it also implies a recip rocal sharing or closeness between the parent and the nurse (Cahill, 1996).Parent partnership, however, demands a work ing association between two people in a joint venture based upon a contract, which may be verbal or written and which may have advantages and disadvantages (Cahill, 1996:567).Both Stower (1992) and Dearmun (1992) explored the bounda ries of the concept "partnership" and concluded that equality and negotiation were central issues in such a partnership (Coyne, 1996:737).Callery and Smith (1991) and Callery (1997) however ques tioned the validity o f role negotiation between nurses and the parents of hospitalised children since nurses m aintain con trol and hold the initiative in the decision about whether ne gotiation takes place.Issues of territory, anxiety, uncertainty, control and conflicts arising from parental com petence all 30 Curationis August 2002 place the parent in a subordinate position.Hence equality too becom es a m isnom er in the issue of partnership (Callery & Smith, 1991:772).
The perception by nurses o f family as "interfering" has also been raised in the literature.Robinson & Thom e (1984) ex amined the phenom enon of family interference and found that nurses tended not to view caring for the needs of families as a realistic expectation of their role.Interpretations of interfer ing behaviour include the belief that interference is a natural consequence of a traum atic situation arising out of the dis ease condition and/or the hospitalisation experience.A lter natively, it may be an indication of pre-existing pathological fam ily dynam ics that becom e overt in the health care context.Robinson and Thom e (1984) further suggest that health care providers and families belong to conceptually distinct but in terdependent cultural systems, each having its own beliefs, values and attitudes.Professional health care providers are oriented towards disease while families focus on their experi ence w ith illness.Nurses, it was argued, could strengthen fam ily "interference" by using observation and assessm ent skills to facilitate progression towards an alliance and by pro moting family involvement.(Robinson & Thome, 1984).
The influence of theories from the social sciences in the de velopm ent o f nursing theories applicable to the family and partnerships should not be underestimated.Darbyshire (1993) suggests, however, that there is a danger in viewing the nursepatient relationship through the lens o f general sociological theory.Benner (1984) mentions a "deficit m ode" portrayed in the literature, as being almost uniform criticism o f nurses and hospitals (Darbyshire, 1993)."N urses are cast in the role o f agents of social control and parents seem no more than passive ciphers in an institutional conspiracy, which seeks to control and oppress them " (Darbyshire, 1993(Darbyshire, :1675)).Such perspectives may explain the social world but are ill equipped to recognise and describe aspects of both nurses' and parents' practices and experiences, which may be positive (Darbyshire, 1993).D arb y sh ire (1993) argues that research such as th at o f Robinson & Thom e (1984), which describes a forw ard m ov ing, linear progression in relationships between parents and nurses, sits com fortably within a Western, scientific under standing.The concern expressed is that nurses may seize on labels to designate rather than understand parents' lived ex periences.Darbyshire (1993) also highlighted the lim itations o f role theory, which is prem ised on the dualistic assumption that our being is distinct from our social practices.Darbyshire (1994) states that m ore recent phenom enological studies "strongly suggest that a parent's way o f 'being-in-the-w orld' cannot be adequately captured in the objective language of roles, which suggests chosen ends rather than integrated sets o f practices through which we interpret and understand our selves and order our everyday activities" .This could apply to nurses' way o f 'being-in-the-w orld' too (author's emphasis).Role negotiation is central to the developm ent o f parent part nership but its lim itations, as elements of parent partnerships, m ust be recognised.

Family-centred care
Coyne (1996) cites literature where a superficial understand ing o f the concept 'family-centred care' or descriptions of parent participation, rather than family-centred care, are ren dered.According to Coyne (1996) the concept of family nurs ing has been generally understood to constitute nursing care given to the total family system or unit.The majority of the literature from the USA referred to the work of Shelton, Jepson & Johnson (1987) who developed a com prehensive fram e work for offering family-centred care to children (Hutchfield, 1999).Shelton's framework was developed in collaboration with parents to provide family-centred care to families with children who had special educational needs (H utchfield, 1999:1180).Family-centred care within this framework em bodies a philosophy o f care where family and professional partnership is evident and normalised patterns for the family are promoted.
Fam ily-centred care in the USA has evolved from a chronic care perspective; whereas in the U K it has evolved from an acute care perspective.In the UK, Nethercott (1993) under took a concept analysis of family-centred care, which although acknowledging the importance of viewing the family in con text and respecting family diversity, focused more on sup porting the functional role of the family.It appears to lack some o f the mutuality demonstrated in Shelton's framework and does not emphasise family strengths (Hutchfield, 1999).
In Hutchfield's (1999) final analysis, the central tenets of fam ily-centred care that emerged seemed to be that the child's best interest be served and that the family are considered the best party to do this.The attitude o f nurses and the provision o f adequate resources are also o f prim ary importance if fam ily-centred care is to be implemented successfully (Hutchfield, 1999).The consequences seem to be based on the assum p tion that both children and fam ilies will benefit from this approach.Although research suggests this, Darbyshire (1994) indicates that caring for their sick child in public can be ex tremely stressful for parents.Clark & Bishop (1988) identi fied adequate time for com munication as an essential ingre dient in family-centred care in order to facilitate the teaching and supportive roles of the nurse.

The reality of family-centred care
Allen & Petr (1998) questioned the assumption that positive developmental outcomes and overall family well being are best achieved when the service system diligently supports the abilities of families to meet the needs of their children.Fam ily-centred care has been recognised to be a multidimensional and complex concept but Allen & Petr (1998:8) propose that in order to arrive at a consensus definition three central and thom y issues need to be addressed: 1) how to define 'fam ily' 2) how to set priorities and resolve conflicts among the m em bers, and 3) how to establish the parameters o f family choice.Family has commonly been defined as a nuclear family with a two-parent, biological family who reside as a household.Many children now reside in single parent families, m ost of 31 Curationis August 2002 which are female-headed and in many cultures the definition of family must include the extended family as well.These factors together with the proposal by Alan & Petre (1998) are pivotal to the reality o f fam ily-centred care in the South Afri can context.In South A frica and Sub-Saharan countries the reality of families without parents, due to the HIV/AIDS pan demic, needs to be considered.In these cases the responsible siblings will have to assume the traditional role o f "parent" in caring for sick babies and children both in hospital and at home.

Cultural dimensions of family-centred care
Much of the literature on fam ily-centred care from the USA and the UK is based upon "Anglo-Saxon and white Am eri can Caucasian beliefs, values and practices" (Leininger in Herbst, 1990: 20).South A frica is a multicultural society where Caucasians are in the minority.As Africans of various cultural and language groups make up the m ajority o f the South African population, it is vital that family-centred care within their socio-cultural domain be defined.This, however, would require research to be conducted into each cultural group's perceptions of rendering family care.In a study conducted in 1986 on 1 038 black urban families in South Africa, Richter, Griesel and Etheridge found that 35% of the sample com prised nuclear families (m an-pluswoman-plus-children with or without marital arrangements).A further 10% comprised single parent families (always a woman) and the remaining 55% comprised extended fam i lies (Cleaver & Botha, 1990:8).Traditional black families were regarded as being highly complex and presumably their structure offered substantial em otional support during earlier times.Extended family support systems (Cleaver & Botha, 1990;M abaso & Uys, 1990), and the support of trusted elders in facilitating health care in the community (Chalmers, 1988;Fisher. 1987;Ntoane, 1988) in African cultural groups in South Africa have largely been eroded.Urbanisation and the apartheid system have played a central role in the erosion of these family support systems (Cleaver & Botha, 1990) and have contributed towards socio-cultural identity crises within African family life.As black youth have become more ex posed to Western values and practices through the m edia and improved education, these Western mores have been adopted.The impact of political change on the empowerment of fam i lies and communities and the scourge of HIV/AIDS over the past 15 years in influencing family values and cultural prac tices should not be underestim ated.Further research would be required to explore the meaning of family in the South African socio-cultural and political context, which fall be yond the scope of this paper.However, the family in South African society appears to be in a state of crisis.This in turn will significantly impact on developing a family-centred care model for care of the sick child in South African health care institutions.

Family choice in family-centred care
In a fam ily-centred approach, family members, not profes sionals, determine who constitutes the family (Allen & Petr, 1998:8).However, family choice can undermine efforts by professionals if the family selects only certain family m em bers to interact with the health care professionals.There are also times when in the conceptualisation o f fam ily-centred care, areas o f fam ily choice must be supported or limited.Some o f the crucial areas in which family choice should be exercised include: defining the family; deciding who shall make decisions for the family; determining the unit o f pro fessional attention and the nature o f the interaction; sharing information; and identifying family needs, goals and inter ventions.(Allen & Petr, 1998).
This level o f family choice may be threatening to profession als who are accustomed to making many o f these decisions themselves, and who see themselves, rather than the family members, as the directors of the helping process (Allen & Petr, 1998:10).This does not imply that professionals have no pow er or influence, as they are also governed by an ethical code of behaviour that frees them to disagree with family de cisions.It also enables nurses to refuse a "service" due to lack o f capability or conflict with their professional scope of practice and/or government legislation (Allen & Petr, 1998).Self-determ ination cannot infringe on the rights of others and choices must be made within an ethical and legal fram ework that respects the rights o f all parties.Nevertheless, Allen & Petr (1998) argue that a family-centred approach requires that limits to family choice be the exception rather than the rule.The professional must communicate utmost respect for the rights and responsibilities of families to manage their own lives, and those o f all their members.

Fostering family strengths
A fam ily-centred approach must also focus on strengthening capability within families to cope with managing an ill child in an often-hostile environment (Allen & Petr, 1998).Pro fessionals must be aware and respect "the fam ily's positive attributes, abilities, talents, resources and aspirations in fa cilitating the helping process" (Allen & Petr, 1998:11).In fostering family strengths, Roberts & M agrab (1991) point to the need for professionals to be sensitive to cultural diversity and identify, use and build strengths within the support net works and broader communities with which families interact (Allen & Petr, 1998).Family strengths come in a variety of forms and may vary by race and culture.The challenge is for professionals to be "creative and open-minded in their views o f what makes a particular characteristic, activity, person or group a positive contribution to a fam ily's life" (Allen & Petr, 1998:11).Fam ily-centred care is continuing to evolve but as it does, professionals in all human disciplines need to constantly evalu ate whether they are prepared to not only work with families but to work for them.W hereas many professionals have been educated to focus on individuals, the family-centred approach requires them to view the whole family as the unit of atten tion.Although health professionals have been prepared to use their expertise to control and direct interventions, the fam ily-centred approach on the other hand, requires the provi sion o f information, knowledge, and options to families and then to respect decisions that the families make.Profession als will always be challenged to balance the interests o f the child, respect for the family as a unit, and professional exper tise Fam ily-centred care is not a dogma to be implemented at all times but m ust be striven for.The incorporation of family-centred care into service delivery is dependent upon these concepts being introduced in institutions that care for sick children as well as those that educate health care profes sionals.

Conclusion
This literature review on family-centred care has addressed the early developments in parental care for hospitalised chil dren, particularly as it relates to developments in the UK and USA.The evolution of the concept 'family-centred care' from its precursors patient involvement, patient collaboration, pa tient participation and patient partnership (substitute parent) followed.It can be concluded that the South African paediat ric and neonatal nursing community are arrested at the un derstanding o f fam ily-centred care as parental involvement in the care of the ill infant/child.Family-centred care was defined and a cursory examination of socio-cultural and po litical factors influencing family life in South Africa was made.There is no separate register for the training o f paediatric and neonatal nurses in South Africa and m odels that prioritise family-centred care do not underpin South African paediatric and neonatal nursing courses.It is therefore timely for nurses to re-evaluate fam ily-centred care practice for hospitalised infants and children and work towards strengthening the role o f the family in providing for the holistic health care needs of their members.By enhancing family-centred care for neonates and children in hospital it is anticipated that hom e-based care, subsequent to discharge, would yield positives outcomes for child health.
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