DISCURSIVE PAPER
Rethinking family-centred care for the child and family in hospital Mary M Tallon, Garth E Kendall and Paul D Snider
Aims and objectives. This paper presents and discusses an alternative model of family-centred care (FCC) that focuses on optimising the health and developmental outcomes of children through the provision of appropriate support to the child’s family. Background. The relevance, meaning and effectiveness of FCC have been challenged recently. Studies show that parents in hospital often feel unsupported, judged by hospital staff and uncertain about what care they should give to their child. With no convincing evidence relating FCC to improved child health outcomes, it has been suggested that FCC should be replaced with a new improved model to guide the care of children in hospital. Design. This integrative review discusses theory and evidence-based literature that supports the practice of an alternative model of FCC that is focused on the health and developmental outcomes of children who are seriously ill, rather than the organisational requirements of children’s hospitals. Methods. Theories and research findings in a wide range of disciplines including epidemiology, psychology, sociology, anthropology and neuroscience were accessed for this discussion. Nursing literature regarding partnership building, communication and FCC was also accessed. Discussion. This paper discusses the benefits of applying a bioecological model of human development, the family and community resource framework, the concepts of allostatic load and biological embedding, empowerment theory, and the nurse– family partnership model to FCC. Conclusion. While there is no direct evidence showing that the implementation of this alternative model of FCC in the hospital setting improves the health and developmental outcomes of children who are seriously ill, there is a great deal of evidence from community nursing practice that suggests it is very likely to do so. Relevance to clinical practice. Application of these theoretical concepts to practice has the potential to underpin a theory of nursing that is relevant for all nurses irrespective of the age of those they care for and the settings within which they work.
What does this paper contribute to the wider global clinical community?
• This paper questions the current
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model of FCC which is based solely on attachment theory and presents an alternative model that is grounded in a wide range of contemporary interdisciplinary knowledge. The alternative model of FCC centres on the physical and emotional influences of the parents and families that shape the early experiences of children who have a serious illness and impact their lifelong health outcomes. By focusing on this model of FCC, nurses will have a great opportunity to show that nursing care makes a real difference to the health and well-being of people and their families independently from other healthcare professions.
Key words: family-centred care, bioecological theory, family resources and psychosocial influences, biological embedding, nurse-family partnership Accepted for publication: 12 January 2015
Authors: Mary M Tallon, MScN, RN, RM, Lecturer, Curtin University, Perth, WA; Garth E Kendall, PhD, MPH, RN, Senior Lecturer, Curtin University, Perth, WA; Paul D Snider, PhD, BSEd, MEd, Adjunct Lecturer, Curtin University, Perth, WA, Australia
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Correspondence: Mary M Tallon, Lecturer, Curtin University, Perth, WA, Australia. Telephone: +61 (08) 9266 2959. E-mail: [email protected]
© 2015 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 1426–1435, doi: 10.1111/jocn.12799
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Aim It is stressful for parents who have a child who is seriously ill in hospital. They are likely to be very concerned about their child’s condition, recovery and the potential effects on health and development in the long term. They may be worried about managing the needs of other children at home or concerned about maintaining and coordinating workplace responsibilities. Not all parents are the same. Some have plentiful personal and financial resources and are well supported within their family and community. Others experience life stresses such as financial strain, conflict in their relationships and a lack of support from friends and relatives. For these parents, the hospitalisation of their sick child may be enough to bring them to breaking point. This will have significant consequences for them and their child. Periods of hospitalisation provide an opportunity for healthcare professionals to work with families to plan, implement and evaluate interventions designed to support the family and optimise the child’s medium to long-term health and developmental outcomes. Family-centred care (FCC) is supposed to focus paediatric nurses’ attention on the family as the most important context of a sick child’s care, however, in practice it seems to mean little more than having a mother ‘room in’ with her child. The practice of FCC has been questioned because there is little evidence that it makes any difference to children or families and there are growing concerns that it might cause more harm than good. This paper presents an alternative model of FCC that focuses on optimising the health and developmental outcomes of children through the provision of appropriate support to the child’s family. This model of care has relevance for all nurses, not just those nurses who are caring for children who are seriously ill.
Background In addition to compromised health outcomes, children who have a serious or chronic illness or disability are at increased risk of emotional problems, behavioural problems and diminished cognitive development. When a child has a serious or chronic illness or disability, other than in exceptional circumstances, they reside in the family home and it is the family, not any one single healthcare professional or organisation, who has the principal responsibility for their health and well-being. Nevertheless, these children are frequently seen in primary healthcare facilities and many are hospitalised for brief or extended periods of time for medical treatment and specialised care. It is well recognised that primary care givers, usually the child’s mother, play an integral part in their child’s care © 2015 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 1426–1435
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during hospitalisation. FCC is mandated in hospital procedures and protocols and well accepted by nurses and other healthcare staff working in children’s hospitals internationally (Mikkelsen & Frederiksen, 2011). In practice, FCC means that a child’s mother or primary care-giver is permitted, even encouraged, to ‘room in’ with her sick child in hospital (Priddis & Shields 2011). Prior to the 1950s, parents, and families generally, were excluded from children’s hospitals; they were permitted to visit for short periods of time only. Attachment theory and subsequent research made it clear that the separation of a child, especially a very young child, from their primary carer was very likely to lead to the child experiencing emotional problems (Raikes & Thompson 2008). As a result of attachment theory, attitudes and practices regarding parents being with their children in hospital began to change. Increasingly, parents were invited to spend more time with their children, outside the usual visiting hours and eventually mothers were even encouraged to ‘room in’ with their child overnight (Shields, Pratt & Hunter, 2006). As the practice became popular, many parents, usually mothers, were encouraged to provide physical care for their children in hospital as well as being there for emotional support (Galvin et al. 2000). Over time, there has been an expectation from nurses and parents, themselves, that the mother will stay with her child and provide routine physical care while nurses are attending to medical and nursing procedures (Avis & Reardon 2008). Shield’s (2010) has recently questioned the relevance, meaning and effectiveness of FCC, suggesting that it is not always best for mother or child. Shield’s makes a number of points. The first is that studies have revealed that many parents report a sense of being left to care for their sick child with little or no support from nursing staff. Second, some parents who are not comfortable staying at the hospital or unable to do so because of other home or work commitments feel judged by hospital staff. Third, there is often some uncertainty about what care a parent should and should not give in hospital. Given that there is no convincing evidence relating FCC to improved maternal or child health outcomes (Fegran et al. 2006, Shields et al. 2006), Shields (2010) went further and suggested that FCC should be replaced with a new improved model to guide the care of children in hospital. We have previously responded to these comments saying that we agree with Shields that FCC as it is practised in many children’s hospitals is not appropriate (Kendall & Tallon 2011). We have proposed an alternative model of FCC that draws attention to the importance of caring for the child in the context of the family. Rather than heralding the demise of FCC, this evidence-based understanding
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which has its roots a wide range of disciplines has the potential to transform the practice of nursing and the delivery of healthcare in general (Kendall & Tallon 2011). Building on recent literature (Kazak 2008, Schwartz 2011, Clarke 2012) that highlights psychological and social issues in the families of children who are seriously ill, this paper elaborates on an alternative model of FCC and provides greater detail about the theoretical perspectives we have proposed and the research evidence that supports our view.
Design This integrative review discusses theory and evidence-based literature that supports the practice of an alternative model of FCC in the paediatric hospital context. This alternative model of FCC is focused on the health and developmental outcomes of children who are seriously and chronically ill, rather than the organisational requirements of children’s hospitals. This alternative model of FCC is relevant to practice in many other clinical settings, in addition to paediatrics. It is anticipated that this discussion will stimulate dialogue that may potentially lead to a distinctive evidencebased theory of nursing that highlights the independent contribution nurses make to the health and well-being of the individuals and families they care for.
Method A number of influential theories and research findings in a wide range of disciplines including epidemiology, psychology, sociology, anthropology and neuroscience were accessed for this discussion using Medline and PsycINFO. In addition, literature regarding partnership building, nursing communication and FCC was accessed using the Cumulative Index of Nursing and Allied Health (CINAHL). The search was limited to papers written in English, published between January 1994–January 2015. Keywords entered included early child development, maternal attachment, family resources, biological embedding, social determinants of health, the seriously or chronically ill child, family-centred care, nursing communication, partnership building and child health outcomes. Each of these concepts will be outlined and discussed in the context of a new direction for FCC.
Discussion Introduction While attachment theory will always have a prominent place in discussions regarding FCC, there are other theo-
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ries and research findings that are also relevant. An overview of this material will be presented in this section followed by an alternative model of FCC. First, the basic concepts of bioecological theory and its relevance for the families of children who have a serious illness will be considered. Second, the family and community resource conceptual framework which focuses specific attention on the characteristics of parents and others who are proximal to, and critically important for, children’s health and developmental outcomes will be outlined. Following this, the third sub-section will introduce the concepts of allostatic load and biological embedding and the substantial evidence for the negative effects of chronic stress for both adults and children. This knowledge and understanding has implications for the way paediatric nurses provide care for children and their families. It supports the ‘family partnerships’ model of care that is widely used by nurses and other health professionals in community health settings. The family partnerships model that is based on the concepts of relationship building, therapeutic communication and empowerment will be outlined, and its relevance for FCC evaluated, in the fourth sub-section. The significance of bioecological theory, the family and community resource framework, biological embedding and the family partnerships model of care for paediatric nursing practice will be highlighted in the fifth and final sub-section.
Bioecological model of human development It is now well accepted that systems theory is the most useful way to organise knowledge of the complex interplay between the biological, psychological and social processes that drive human development from the time before conception (Del Giudice & Belsky 2010). Bronfenbrenner’s ecological model of human development which has been extended to include biological processes has become the most popular meta-theoretical perspective with researchers as well as practitioners (Kendall & Li 2005). While the bioecological model identifies broad concepts and the relationship between these concepts, it does not seek to explain complex developmental processes in the greatest level of detail. The purpose of this meta-theory is to provide a framework to organise knowledge and understanding derived from the theories and conceptual frameworks of many inter-related disciplines (Kendall et al. 2009). Bioecological theory has given rise to the concept of biological embedding that will be introduced in this paper. Influencing factors are organised in layers beginning with the stimulation, nurturance and care-giving activities of the © 2015 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 1426–1435
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parents and those closest to the child making up the ‘microsystem’ (Bronfenbrenner & Ceci 1994). The attachment of an infant or young child to their mother is one of the most important functions of the microsystem (Dickstein et al. 2009). Attachment will be discussed in detail in a subsequent section. Outside the home child care, school and neighbourhood settings are described within the ‘mesosystem’. These contexts play an increasingly important role in shaping development as children grow older (Zubrick et al. 2000). For children who have a serious or chronic illness, the hospital can become an important context for their development (Salmela et al. 2010). Contexts, such as the parent’s place of work, are referred to as the ‘exosystem’ and have considerable implications for the child. For example, significant associations between nonstandard work schedules and adverse child developmental outcomes have been reported (Johnson et al. 2013). Wider social, cultural, political and economic factors that optimise or constrain children’s access to financial and physical resources, such as health services and education are included within the ‘macrosystem’ (Kendall et al. 2009). There is a great deal of evidence that these structural factors which have become known as the social determinants of health, have a marked impact on children’s health and developmental outcomes (Aber et al. 2007, Hertzman 2009). Brooks-Gunn, a follower of Bronfenbrenner, has developed the family and community resource framework to draw specific attention on the microsystem and mesosystems, as the proximal contexts of children’s development (Kendall & Li 2005).
The family and community resource framework How parents cope with the care of a seriously ill child will depend on their personal characteristics and the quality and quantity of the resources they have access to (Maggi et al. 2005). Psychological and social factors within the family, such as maternal mental health, family relationships, the experience of life stress and access to social support, can have a significant impact on how parents will manage (Kendall et al. 2009). A mother’s knowledge and her level of confidence in providing care for her seriously ill child, for example, will influence a child’s health and development through attachment relationships, parenting style and problem solving skills (Tallon et al. 2015). Family disharmony and conflict in relationships can significantly impact children’s health and developmental outcomes (Li et al. 2009). The relationship between a lack of social support and suboptimal child health outcomes is also well evidenced (Manuel 2012). Family resources are frequently stretched to the limit when a child is seriously ill. The stress that is experi© 2015 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 1426–1435
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enced is very likely to be compounded when a seriously ill child is hospitalised. The family and community resource framework provides a useful structure to consider the financial, physical, human and social capital resources that the families of children who are seriously ill have access to (Duncan et al. 1994, Zubrick et al. 2000, Kendall & Li 2005). As to financial capital, money problems are, perhaps, the biggest cause of stress for families, even in wealthy countries like Australia. While absolute poverty is associated with developing countries, research shows that relative poverty in high-income countries makes a significant contribution to poor health outcomes (Aber et al. 2007). Financial strain is important because when a child is hospitalised with a serious illness, it may lead to arguments between parents. This, in turn, can be associated with other life stresses, such as socioeconomic disadvantage, poverty, mental health problems and low self-esteem. These factors, individually or collectively, are likely to further compound the experience of stress for affected parents and their capacity to manage (Beardslee & Knitzer 2004, Evans et al. 2005, Votruba-Drzal 2006). Access to an appropriate vehicle is an example of the physical capital of the family. When a child is in hospital, mothers without a means of transport may experience additional stress such as also managing and responding to the needs of her other children at home (Dunlap 2004). Following discharge, the difficulties parents experience related to accessing important services and support are critical to their child’s recovery and long-term health (Axia 2004). This is important because over recent years, the time children spend in hospital has reduced with parents often required to attend follow-up appointments at hospital clinics, and attend to their child’s special care needs in the home (Howard & Brooks-Gunn 2009). Regardless of parental qualities, capabilities and access to support, when a child is ill and in hospital, they usually require a great deal of support. In this framework, human capital is conceptualised as the totality of resources that are acquired from the time of conception by all human beings. Children develop human capital as they grow and their parents possess human capital in the form of their level of physical and mental health, their level of knowledge and understanding, and their capacity to participate in useful activities, such as parenting (Becker & Tomes 1986, Becker 1993). Research confirms that higher levels of parental human capital are associated with better child health and developmental outcomes (DeWalt & Hink 2009). Children who are born to parents with higher levels of education and self-efficacy, for example, are likely to be more confident and have the desire to achieve at school and in life generally (Dawley et al. 2007). A great deal of
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research shows that parental mental health problems, such as anxiety and depression, undermine positive parenting behaviours (Field et al. 2010). For example, in the presence of depression, parental goals may become less child-oriented where parents give less attention to their children, and are more likely to engage in coercive parenting practices (Dix & Meunier 2009). Trusting, reciprocal relationships between family members and others in the community are known as social capital and can be a significant resource for family members (Kendall & Li 2005). For example, if two parents cooperate to share child care duties, this has benefits for everyone in the family. The dyadic relationship between parents, family structure, working hours and the interactive time spent with the child are all important components of social capital that can support attachment, family functioning and adaptation to stress (Zubrick et al. 2000). Perhaps, the most important form of social capital in the family is the relationship between a mother and her child. The attachment of an infant or young child to their mother is one of the most important building blocks of development (Dickstein et al. 2009). It is well recognised that the attachment experience for the child, carries with it, significant implications for the child’s developmental processes of cognition, perception, emotion and motivation (Howard & Brooks-Gunn 2009). How a mother relates to her child provides the conditions for the infant’s regulation of emotional arousal and response, with implications for emotional development and relating to others throughout life (Raikes & Thompson 2008). Research evidence supports that children who have their needs met are more likely to achieve healthy physical, mental and cognitive development (Luthar & Brown 2007). Conversely, care-giving by parents affected by depression had reduced parental capacity to respond and attend to their child’s needs resulting in increased negative parenting reactions towards the child (Dix & Meunier 2009). Research findings show that extended family support, also considered a source of social capital, is associated with an increased sense of maternal confidence and mastery, particularly in younger mothers (Surjadi et al. 2011). Improved self-esteem, parenting skills and communication with children are some of the additional benefits to mothers who meet in groups regularly, outside the home (Lipman et al. 2010). On the other hand, frequent residential moves associated with relative poverty and housing stress are known to be a cause of social isolation which is a significant disadvantage for children (Dockery et al. 2009). Families and communities that comprise the environments in which children’s development takes place influence
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physiological functioning through a series of mechanisms that are referred to collectively as biological embedding (Hertzman 2012, Shonkoff 2012). Children who are seriously ill are especially vulnerable to the influence of these environments.
Allostatic load and biological embedding When a child has a serious illness, it is a major life stressor for parents as well as the child. For parents, chronic stress is associated with anxiety and depression and a decreased capacity to provide appropriate care for their child (Tallon et al. 2015). For children, excessive stress influences gene expression, neuro-endocrine-immune system development and brain growth (Nelson et al. 2014). Research evidence shows that children who have a serious illness are especially vulnerable to perturbations in these physiological processes that lead to adverse health and developmental outcomes (Wernovsky, 2006). The concept of allostatic load provides a useful theoretical perspective for understanding how the stress that parents experience when their child is seriously ill affects their own health and well-being (McEwen 2012). Very briefly, through the hippocampus, amygdala and prefrontal cortex, the brain processes inputs from the external environment and controls bodily adjustments that promote adaptive functioning. Through a series of biomediators, the autonomic nervous, endocrine and immune systems promote adaptation to challenges and threats from both the internal and external environments (McEwen & Gianaros 2010). Functioning in a highly integrated way, these systems promote biological coping mechanisms in response to environmental challenges in the short term. However, chronic exposure to both physical and psychosocial stressors, leading to prolonged activation of the systems, has detrimental physiological consequences referred to as allostatic load (McEwen & Gianaros 2010). People who are ill and the parents of children who seriously ill, experience significant stress, which when coupled with additional stresses in their lives can easily turn to distress (allostatic load). Distress leads to poor physical as well as mental health outcomes in the short, medium and long term. How parents respond to stress and manage their situation will vary. Individual differences, learning processes and previous experience all influence the neurobiological processes associated with allostatic load (Danese & McEwen 2011). An understanding of the concept of allostatic load and the supporting evidence is important for paediatric nurses for two reasons. First, parental health and well-being matters because it is the care that parents give that is most influen© 2015 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 1426–1435
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tial for their child’s long-term health and well-being (Kendall & Li, 2009). Parents who experience multiple life stresses have a diminished capacity to provide appropriate care. Parental care-giving is especially important when a child is seriously ill. Mothers who are distressed, for example, are less confident in the understanding of the complex care needs of their child (Tallon et al. 2015). Second, the physical, psychological and social environment provided by parents shapes their child’s early experiences and through the process of biological embedding lays the foundations for lifelong behaviour, cognition and health (Shonkoff 2012). Before birth, a child’s development is inextricably connected to their mother and in turn to the physical and psychosocial environment in which she lives (Huizink et al. 2004). Babies are born ready to interact with their environment which continues to shape development through the expression of genes, psycho-neuro-endocrineimmune processes and brain growth. When the human genome project was completed in 2003 it had become evident that the mechanisms whereby genes influence health and development were much more complicated than originally thought (Hyman, 2011). The long held notion of ‘genes versus environment’ was dispensed with as scientists realised that all genes are expressed, that is, their effect is influenced by chemical processes that are, in turn, influenced by the physical and psychosocial environment (McGowan et al. 2008). Epigenetics refers to the process within DNA in which nongenetic factors cause the organism’s genes to behave (or ‘express themselves’) differently (McGowan et al. 2008). In addition to influencing gene expression, exposure to adverse events in a child’s environment affects the development of the sympatho adrenal medullary (SAM) pathway and the hypothalamic–pituitary–adrenal (HPA) axis that determine stress responsiveness (McEwen 2008). The effects of adverse events on the HPA system are most marked when stressors are chronic, with evidence that children’s capacity to regulate physiological arousal can be altered over time. In acute stress, cortisol is elevated but soon returns to normal. With chronic stress, some children’s cortisol secretion remains high over a time rather than returning to baseline. Sustained elevated cortisol, in turn, effects children’s capacity to cope with challenge, impairs learning capacity, increases insulin resistance, suppresses growth hormones, and impairs immune competence, all of which have long-term implications for later achievement, social functioning and health status (Shonkoff et al. 2009). Furthermore, recent evidence from research using magnetic resonance imaging (MRI) and functional magnetic resonance imaging (fMRI) shows that the stimulation © 2015 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 1426–1435
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provided by care givers is fundamental to the developing brain (McEwen et al. 2012). The malleable nature of the newborn’s brain determines the way neurons become ‘wired-up’ (Belsky & Pluess 2009). This flexibility is known as plasticity, whereby brain cells modify their structure and function in response to physical and emotional stimulation (OECD, 2007). Research findings show that while plasticity can be protective when a child is exposed to stressful life events, it may also contribute to physical and emotional health problems later in life (Shonkoff 2012). The parents of children who are serious ill need a great deal of psychological support to prevent them becoming distressed, or to allay the intensity of their distress. The support given to parents will have great benefits for them and for their children. The child’s home environment will be more settled and their capacity to care for their child appropriately will be enhanced. Nurses are in a unique position as physical carers to develop a supportive relationship that may potentially reduce stress and prevent distress, which in turn will increase the likelihood of positive adaptation.
Nurse–family partnership Research evidence supports the notion that the process of information sharing where parents feel listened to, valued and respected, can assist families to clarify their concerns and identify their strengths, which can support ways of coping and renew parental confidence (Edwards et al. 2009). Equally, parents who feel judged or misunderstood are more likely to have difficulty developing a trusting relationship with nursing staff, and, are also less likely to engage in information sharing (Avis & Reardon 2008). While therapeutic communication is deemed essential and often described as the foundation on which nursing practice is based (Warelow et al. 2008), there is little research evidence evaluating how education in nursing communication is delivered or evaluated (Chant et al. 2002, Mullan & Kothe 2010). This gap is of consequence to how nurses go about their core business. For paediatric nurses building a trusting relationship is often required in very stressful and anxious circumstances and bringing qualities that promote a helping relationship with the children and parents they care for is critical. Education programmes based on the Family Advisor Model developed by Davis et al. (2002) have been promoted and adapted with the emphasis on helping families to help themselves. The nurse–family partnership model uses the qualities of respect, humility, reflective listening, and, a quiet enthusiasm, as essential to developing a
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helping relationship with the parents based on trust and characterised by exploratory questioning, sharing information and encouraging parents’ to tell their stories, and a reflective dialogue is promoted to reinforce family strengths and needs (Bidmead et al. 2002). This process has its roots in Friere’s (1999) empowerment theory driven by personal experience to overcome oppression by a mutual instigation of action for positive change. Empowerment theory has been a catalyst for worldwide programmes in literacy, education and healthcare focusing on shared information and capacity building while promoting the qualities of equality, respect and humility (WHO 2009). Literature related to community nursing settings emphasises the benefits of bringing attention to the sociodemographic and psychosocial characteristics of the families they care for through relationship building and therapeutic communication. Published findings include the evaluation of interventions in community settings in the Unites States (US) that are based on these concepts showing significant improvements in maternal and child health outcomes predominantly among young disadvantaged mothers (Olds 2006, Dawley et al. 2007). Here, using a family partnership approach nurses similarly included attention to sociodemographic and psychosocial characteristics while evaluating early intervention nursing programmes. Results showed improved physical growth and early education learning outcomes in the children, and improved mothercrafting skills and an increase in return to education and the workforce, among the mothers. In a further USA example, a home visiting programme for infants following complex heart surgery where participating mothers received support from a home visiting nurse service was evaluated (Soetenga & Mussatto 2004). Results showed that the mothers became more alert to picking up earlier signs of change in their infants condition, resulting in an improvement in timely presentation for health review and a reduction in the incidence of hypoxia-related episodes. The findings also supported improved maternal confidence and decision making (Soetenga & Mussatto 2004). In Australia, similar community-based intervention programmes have received extensive funding and experienced growth in recent years with improved attendance at school and presentation for healthcare assessment seen in participating indigenous communities (Keatinge et al. 2007, HaswellElkins et al. 2009). The family–nurse partnership initiatives in the UK have shown improved maternal and child health outcomes following teen pregnancy with increased attendance to infant health clinics and improved health promotion interventions (Piper 2011).
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Conclusion and relevance for clinical practice Family-centred care continues to be the widely accepted model for the care of children and families in hospital. However, the current model is limited because rather than keeping pace with relevant theory and research-based evidence, it continues to focus solely on attachment theory. This paper challenges the adequacy of the current model of FCC and presents an alternative model that is based on contemporary knowledge and understanding. Evidence supporting the benefits of applying a bioecological model of human development, the family and community resource framework, the concepts of allostatic load and biological embedding, empowerment theory and the nurse–family partnership model to FCC are presented and discussed. These theoretical components centre on the physical and emotional influences of the parents and family that shape the early experiences of children who have a serious illness and impact their lifelong health outcomes. It is proposed that nurses bring the knowledge and understanding of these concepts to their care of children and families in hospital. Following the nursing process, this alternative model can be used to guide the assessment, planning, implementation and evaluation of paediatric nursing care. An instrument is currently in use in paediatric hospitals worldwide that enables healthcare professionals to assess family psychosocial functioning (Kazak 2008, Schwartz 2011, Clarke 2012). There is potential to develop a psychosocial assessment instrument that is specific to the needs of paediatric nurses and families (Garg & Dworkin 2011). Such an assessment framework is the subject of research being undertaken by the authors at the present time. It is anticipated that nurses will be able to implement this framework without additional demands being placed on their time. The planning, implementation and evaluation of nursing care will be determined by information about the family’s circumstances, using the family–nurse partnership model of care. While there is no direct evidence, to date, showing that this form of care in the hospital setting is likely to improve the health and developmental outcomes of children who are seriously ill, there is a great deal of evidence from community nursing practice that suggests it is very likely to do so (Olds 2006, Dawley et al. 2007, Keatinge et al. 2007, Olds et al. 2007, Haswell-Elkins et al. 2009, Piper 2011). In essence, the theories and research-based knowledge and understanding presented in this paper have potential to underpin a theory of nursing that is relevant for all nurses irrespective of the age of the people they care for and the settings within which they work. What would set this © 2015 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 1426–1435
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approach apart from many nursing theories of the past is that it is grounded in a wide range of interdisciplinary knowledge and it invites empirical scrutiny. By focusing on this model of FCC, nurses will have a great opportunity to show that nursing care makes a real difference to the health and well-being of people and their families independently from other healthcare professions.
ethical_1author.html), as follows: (1) substantial contributions to conception and design of, or acquisition of data or analysis and interpretation of data, (2) drafting the article or revising it critically for important intellectual content and (3) final approval of the version to be published.
Conflict of interest No conflict of interest to declare.
Disclosure The authors have confirmed that all authors meet the ICMJE criteria for authorship credit (www.icmje.org/
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Rethinking family-centred care for the child and family in hospital Mary M Tallon, Garth E Kendall and Paul D Snider
Aims and objectives. This paper presents and discusses an alternative model of family-centred care (FCC) that focuses on optimising the health and developmental outcomes of children through the provision of appropriate support to the child’s family. Background. The relevance, meaning and effectiveness of FCC have been challenged recently. Studies show that parents in hospital often feel unsupported, judged by hospital staff and uncertain about what care they should give to their child. With no convincing evidence relating FCC to improved child health outcomes, it has been suggested that FCC should be replaced with a new improved model to guide the care of children in hospital. Design. This integrative review discusses theory and evidence-based literature that supports the practice of an alternative model of FCC that is focused on the health and developmental outcomes of children who are seriously ill, rather than the organisational requirements of children’s hospitals. Methods. Theories and research findings in a wide range of disciplines including epidemiology, psychology, sociology, anthropology and neuroscience were accessed for this discussion. Nursing literature regarding partnership building, communication and FCC was also accessed. Discussion. This paper discusses the benefits of applying a bioecological model of human development, the family and community resource framework, the concepts of allostatic load and biological embedding, empowerment theory, and the nurse– family partnership model to FCC. Conclusion. While there is no direct evidence showing that the implementation of this alternative model of FCC in the hospital setting improves the health and developmental outcomes of children who are seriously ill, there is a great deal of evidence from community nursing practice that suggests it is very likely to do so. Relevance to clinical practice. Application of these theoretical concepts to practice has the potential to underpin a theory of nursing that is relevant for all nurses irrespective of the age of those they care for and the settings within which they work.
What does this paper contribute to the wider global clinical community?
• This paper questions the current
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model of FCC which is based solely on attachment theory and presents an alternative model that is grounded in a wide range of contemporary interdisciplinary knowledge. The alternative model of FCC centres on the physical and emotional influences of the parents and families that shape the early experiences of children who have a serious illness and impact their lifelong health outcomes. By focusing on this model of FCC, nurses will have a great opportunity to show that nursing care makes a real difference to the health and well-being of people and their families independently from other healthcare professions.
Key words: family-centred care, bioecological theory, family resources and psychosocial influences, biological embedding, nurse-family partnership Accepted for publication: 12 January 2015
Authors: Mary M Tallon, MScN, RN, RM, Lecturer, Curtin University, Perth, WA; Garth E Kendall, PhD, MPH, RN, Senior Lecturer, Curtin University, Perth, WA; Paul D Snider, PhD, BSEd, MEd, Adjunct Lecturer, Curtin University, Perth, WA, Australia
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Correspondence: Mary M Tallon, Lecturer, Curtin University, Perth, WA, Australia. Telephone: +61 (08) 9266 2959. E-mail: [email protected]
© 2015 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 1426–1435, doi: 10.1111/jocn.12799
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Aim It is stressful for parents who have a child who is seriously ill in hospital. They are likely to be very concerned about their child’s condition, recovery and the potential effects on health and development in the long term. They may be worried about managing the needs of other children at home or concerned about maintaining and coordinating workplace responsibilities. Not all parents are the same. Some have plentiful personal and financial resources and are well supported within their family and community. Others experience life stresses such as financial strain, conflict in their relationships and a lack of support from friends and relatives. For these parents, the hospitalisation of their sick child may be enough to bring them to breaking point. This will have significant consequences for them and their child. Periods of hospitalisation provide an opportunity for healthcare professionals to work with families to plan, implement and evaluate interventions designed to support the family and optimise the child’s medium to long-term health and developmental outcomes. Family-centred care (FCC) is supposed to focus paediatric nurses’ attention on the family as the most important context of a sick child’s care, however, in practice it seems to mean little more than having a mother ‘room in’ with her child. The practice of FCC has been questioned because there is little evidence that it makes any difference to children or families and there are growing concerns that it might cause more harm than good. This paper presents an alternative model of FCC that focuses on optimising the health and developmental outcomes of children through the provision of appropriate support to the child’s family. This model of care has relevance for all nurses, not just those nurses who are caring for children who are seriously ill.
Background In addition to compromised health outcomes, children who have a serious or chronic illness or disability are at increased risk of emotional problems, behavioural problems and diminished cognitive development. When a child has a serious or chronic illness or disability, other than in exceptional circumstances, they reside in the family home and it is the family, not any one single healthcare professional or organisation, who has the principal responsibility for their health and well-being. Nevertheless, these children are frequently seen in primary healthcare facilities and many are hospitalised for brief or extended periods of time for medical treatment and specialised care. It is well recognised that primary care givers, usually the child’s mother, play an integral part in their child’s care © 2015 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 1426–1435
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during hospitalisation. FCC is mandated in hospital procedures and protocols and well accepted by nurses and other healthcare staff working in children’s hospitals internationally (Mikkelsen & Frederiksen, 2011). In practice, FCC means that a child’s mother or primary care-giver is permitted, even encouraged, to ‘room in’ with her sick child in hospital (Priddis & Shields 2011). Prior to the 1950s, parents, and families generally, were excluded from children’s hospitals; they were permitted to visit for short periods of time only. Attachment theory and subsequent research made it clear that the separation of a child, especially a very young child, from their primary carer was very likely to lead to the child experiencing emotional problems (Raikes & Thompson 2008). As a result of attachment theory, attitudes and practices regarding parents being with their children in hospital began to change. Increasingly, parents were invited to spend more time with their children, outside the usual visiting hours and eventually mothers were even encouraged to ‘room in’ with their child overnight (Shields, Pratt & Hunter, 2006). As the practice became popular, many parents, usually mothers, were encouraged to provide physical care for their children in hospital as well as being there for emotional support (Galvin et al. 2000). Over time, there has been an expectation from nurses and parents, themselves, that the mother will stay with her child and provide routine physical care while nurses are attending to medical and nursing procedures (Avis & Reardon 2008). Shield’s (2010) has recently questioned the relevance, meaning and effectiveness of FCC, suggesting that it is not always best for mother or child. Shield’s makes a number of points. The first is that studies have revealed that many parents report a sense of being left to care for their sick child with little or no support from nursing staff. Second, some parents who are not comfortable staying at the hospital or unable to do so because of other home or work commitments feel judged by hospital staff. Third, there is often some uncertainty about what care a parent should and should not give in hospital. Given that there is no convincing evidence relating FCC to improved maternal or child health outcomes (Fegran et al. 2006, Shields et al. 2006), Shields (2010) went further and suggested that FCC should be replaced with a new improved model to guide the care of children in hospital. We have previously responded to these comments saying that we agree with Shields that FCC as it is practised in many children’s hospitals is not appropriate (Kendall & Tallon 2011). We have proposed an alternative model of FCC that draws attention to the importance of caring for the child in the context of the family. Rather than heralding the demise of FCC, this evidence-based understanding
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which has its roots a wide range of disciplines has the potential to transform the practice of nursing and the delivery of healthcare in general (Kendall & Tallon 2011). Building on recent literature (Kazak 2008, Schwartz 2011, Clarke 2012) that highlights psychological and social issues in the families of children who are seriously ill, this paper elaborates on an alternative model of FCC and provides greater detail about the theoretical perspectives we have proposed and the research evidence that supports our view.
Design This integrative review discusses theory and evidence-based literature that supports the practice of an alternative model of FCC in the paediatric hospital context. This alternative model of FCC is focused on the health and developmental outcomes of children who are seriously and chronically ill, rather than the organisational requirements of children’s hospitals. This alternative model of FCC is relevant to practice in many other clinical settings, in addition to paediatrics. It is anticipated that this discussion will stimulate dialogue that may potentially lead to a distinctive evidencebased theory of nursing that highlights the independent contribution nurses make to the health and well-being of the individuals and families they care for.
Method A number of influential theories and research findings in a wide range of disciplines including epidemiology, psychology, sociology, anthropology and neuroscience were accessed for this discussion using Medline and PsycINFO. In addition, literature regarding partnership building, nursing communication and FCC was accessed using the Cumulative Index of Nursing and Allied Health (CINAHL). The search was limited to papers written in English, published between January 1994–January 2015. Keywords entered included early child development, maternal attachment, family resources, biological embedding, social determinants of health, the seriously or chronically ill child, family-centred care, nursing communication, partnership building and child health outcomes. Each of these concepts will be outlined and discussed in the context of a new direction for FCC.
Discussion Introduction While attachment theory will always have a prominent place in discussions regarding FCC, there are other theo-
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ries and research findings that are also relevant. An overview of this material will be presented in this section followed by an alternative model of FCC. First, the basic concepts of bioecological theory and its relevance for the families of children who have a serious illness will be considered. Second, the family and community resource conceptual framework which focuses specific attention on the characteristics of parents and others who are proximal to, and critically important for, children’s health and developmental outcomes will be outlined. Following this, the third sub-section will introduce the concepts of allostatic load and biological embedding and the substantial evidence for the negative effects of chronic stress for both adults and children. This knowledge and understanding has implications for the way paediatric nurses provide care for children and their families. It supports the ‘family partnerships’ model of care that is widely used by nurses and other health professionals in community health settings. The family partnerships model that is based on the concepts of relationship building, therapeutic communication and empowerment will be outlined, and its relevance for FCC evaluated, in the fourth sub-section. The significance of bioecological theory, the family and community resource framework, biological embedding and the family partnerships model of care for paediatric nursing practice will be highlighted in the fifth and final sub-section.
Bioecological model of human development It is now well accepted that systems theory is the most useful way to organise knowledge of the complex interplay between the biological, psychological and social processes that drive human development from the time before conception (Del Giudice & Belsky 2010). Bronfenbrenner’s ecological model of human development which has been extended to include biological processes has become the most popular meta-theoretical perspective with researchers as well as practitioners (Kendall & Li 2005). While the bioecological model identifies broad concepts and the relationship between these concepts, it does not seek to explain complex developmental processes in the greatest level of detail. The purpose of this meta-theory is to provide a framework to organise knowledge and understanding derived from the theories and conceptual frameworks of many inter-related disciplines (Kendall et al. 2009). Bioecological theory has given rise to the concept of biological embedding that will be introduced in this paper. Influencing factors are organised in layers beginning with the stimulation, nurturance and care-giving activities of the © 2015 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 1426–1435
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parents and those closest to the child making up the ‘microsystem’ (Bronfenbrenner & Ceci 1994). The attachment of an infant or young child to their mother is one of the most important functions of the microsystem (Dickstein et al. 2009). Attachment will be discussed in detail in a subsequent section. Outside the home child care, school and neighbourhood settings are described within the ‘mesosystem’. These contexts play an increasingly important role in shaping development as children grow older (Zubrick et al. 2000). For children who have a serious or chronic illness, the hospital can become an important context for their development (Salmela et al. 2010). Contexts, such as the parent’s place of work, are referred to as the ‘exosystem’ and have considerable implications for the child. For example, significant associations between nonstandard work schedules and adverse child developmental outcomes have been reported (Johnson et al. 2013). Wider social, cultural, political and economic factors that optimise or constrain children’s access to financial and physical resources, such as health services and education are included within the ‘macrosystem’ (Kendall et al. 2009). There is a great deal of evidence that these structural factors which have become known as the social determinants of health, have a marked impact on children’s health and developmental outcomes (Aber et al. 2007, Hertzman 2009). Brooks-Gunn, a follower of Bronfenbrenner, has developed the family and community resource framework to draw specific attention on the microsystem and mesosystems, as the proximal contexts of children’s development (Kendall & Li 2005).
The family and community resource framework How parents cope with the care of a seriously ill child will depend on their personal characteristics and the quality and quantity of the resources they have access to (Maggi et al. 2005). Psychological and social factors within the family, such as maternal mental health, family relationships, the experience of life stress and access to social support, can have a significant impact on how parents will manage (Kendall et al. 2009). A mother’s knowledge and her level of confidence in providing care for her seriously ill child, for example, will influence a child’s health and development through attachment relationships, parenting style and problem solving skills (Tallon et al. 2015). Family disharmony and conflict in relationships can significantly impact children’s health and developmental outcomes (Li et al. 2009). The relationship between a lack of social support and suboptimal child health outcomes is also well evidenced (Manuel 2012). Family resources are frequently stretched to the limit when a child is seriously ill. The stress that is experi© 2015 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 1426–1435
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enced is very likely to be compounded when a seriously ill child is hospitalised. The family and community resource framework provides a useful structure to consider the financial, physical, human and social capital resources that the families of children who are seriously ill have access to (Duncan et al. 1994, Zubrick et al. 2000, Kendall & Li 2005). As to financial capital, money problems are, perhaps, the biggest cause of stress for families, even in wealthy countries like Australia. While absolute poverty is associated with developing countries, research shows that relative poverty in high-income countries makes a significant contribution to poor health outcomes (Aber et al. 2007). Financial strain is important because when a child is hospitalised with a serious illness, it may lead to arguments between parents. This, in turn, can be associated with other life stresses, such as socioeconomic disadvantage, poverty, mental health problems and low self-esteem. These factors, individually or collectively, are likely to further compound the experience of stress for affected parents and their capacity to manage (Beardslee & Knitzer 2004, Evans et al. 2005, Votruba-Drzal 2006). Access to an appropriate vehicle is an example of the physical capital of the family. When a child is in hospital, mothers without a means of transport may experience additional stress such as also managing and responding to the needs of her other children at home (Dunlap 2004). Following discharge, the difficulties parents experience related to accessing important services and support are critical to their child’s recovery and long-term health (Axia 2004). This is important because over recent years, the time children spend in hospital has reduced with parents often required to attend follow-up appointments at hospital clinics, and attend to their child’s special care needs in the home (Howard & Brooks-Gunn 2009). Regardless of parental qualities, capabilities and access to support, when a child is ill and in hospital, they usually require a great deal of support. In this framework, human capital is conceptualised as the totality of resources that are acquired from the time of conception by all human beings. Children develop human capital as they grow and their parents possess human capital in the form of their level of physical and mental health, their level of knowledge and understanding, and their capacity to participate in useful activities, such as parenting (Becker & Tomes 1986, Becker 1993). Research confirms that higher levels of parental human capital are associated with better child health and developmental outcomes (DeWalt & Hink 2009). Children who are born to parents with higher levels of education and self-efficacy, for example, are likely to be more confident and have the desire to achieve at school and in life generally (Dawley et al. 2007). A great deal of
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research shows that parental mental health problems, such as anxiety and depression, undermine positive parenting behaviours (Field et al. 2010). For example, in the presence of depression, parental goals may become less child-oriented where parents give less attention to their children, and are more likely to engage in coercive parenting practices (Dix & Meunier 2009). Trusting, reciprocal relationships between family members and others in the community are known as social capital and can be a significant resource for family members (Kendall & Li 2005). For example, if two parents cooperate to share child care duties, this has benefits for everyone in the family. The dyadic relationship between parents, family structure, working hours and the interactive time spent with the child are all important components of social capital that can support attachment, family functioning and adaptation to stress (Zubrick et al. 2000). Perhaps, the most important form of social capital in the family is the relationship between a mother and her child. The attachment of an infant or young child to their mother is one of the most important building blocks of development (Dickstein et al. 2009). It is well recognised that the attachment experience for the child, carries with it, significant implications for the child’s developmental processes of cognition, perception, emotion and motivation (Howard & Brooks-Gunn 2009). How a mother relates to her child provides the conditions for the infant’s regulation of emotional arousal and response, with implications for emotional development and relating to others throughout life (Raikes & Thompson 2008). Research evidence supports that children who have their needs met are more likely to achieve healthy physical, mental and cognitive development (Luthar & Brown 2007). Conversely, care-giving by parents affected by depression had reduced parental capacity to respond and attend to their child’s needs resulting in increased negative parenting reactions towards the child (Dix & Meunier 2009). Research findings show that extended family support, also considered a source of social capital, is associated with an increased sense of maternal confidence and mastery, particularly in younger mothers (Surjadi et al. 2011). Improved self-esteem, parenting skills and communication with children are some of the additional benefits to mothers who meet in groups regularly, outside the home (Lipman et al. 2010). On the other hand, frequent residential moves associated with relative poverty and housing stress are known to be a cause of social isolation which is a significant disadvantage for children (Dockery et al. 2009). Families and communities that comprise the environments in which children’s development takes place influence
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physiological functioning through a series of mechanisms that are referred to collectively as biological embedding (Hertzman 2012, Shonkoff 2012). Children who are seriously ill are especially vulnerable to the influence of these environments.
Allostatic load and biological embedding When a child has a serious illness, it is a major life stressor for parents as well as the child. For parents, chronic stress is associated with anxiety and depression and a decreased capacity to provide appropriate care for their child (Tallon et al. 2015). For children, excessive stress influences gene expression, neuro-endocrine-immune system development and brain growth (Nelson et al. 2014). Research evidence shows that children who have a serious illness are especially vulnerable to perturbations in these physiological processes that lead to adverse health and developmental outcomes (Wernovsky, 2006). The concept of allostatic load provides a useful theoretical perspective for understanding how the stress that parents experience when their child is seriously ill affects their own health and well-being (McEwen 2012). Very briefly, through the hippocampus, amygdala and prefrontal cortex, the brain processes inputs from the external environment and controls bodily adjustments that promote adaptive functioning. Through a series of biomediators, the autonomic nervous, endocrine and immune systems promote adaptation to challenges and threats from both the internal and external environments (McEwen & Gianaros 2010). Functioning in a highly integrated way, these systems promote biological coping mechanisms in response to environmental challenges in the short term. However, chronic exposure to both physical and psychosocial stressors, leading to prolonged activation of the systems, has detrimental physiological consequences referred to as allostatic load (McEwen & Gianaros 2010). People who are ill and the parents of children who seriously ill, experience significant stress, which when coupled with additional stresses in their lives can easily turn to distress (allostatic load). Distress leads to poor physical as well as mental health outcomes in the short, medium and long term. How parents respond to stress and manage their situation will vary. Individual differences, learning processes and previous experience all influence the neurobiological processes associated with allostatic load (Danese & McEwen 2011). An understanding of the concept of allostatic load and the supporting evidence is important for paediatric nurses for two reasons. First, parental health and well-being matters because it is the care that parents give that is most influen© 2015 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 1426–1435
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tial for their child’s long-term health and well-being (Kendall & Li, 2009). Parents who experience multiple life stresses have a diminished capacity to provide appropriate care. Parental care-giving is especially important when a child is seriously ill. Mothers who are distressed, for example, are less confident in the understanding of the complex care needs of their child (Tallon et al. 2015). Second, the physical, psychological and social environment provided by parents shapes their child’s early experiences and through the process of biological embedding lays the foundations for lifelong behaviour, cognition and health (Shonkoff 2012). Before birth, a child’s development is inextricably connected to their mother and in turn to the physical and psychosocial environment in which she lives (Huizink et al. 2004). Babies are born ready to interact with their environment which continues to shape development through the expression of genes, psycho-neuro-endocrineimmune processes and brain growth. When the human genome project was completed in 2003 it had become evident that the mechanisms whereby genes influence health and development were much more complicated than originally thought (Hyman, 2011). The long held notion of ‘genes versus environment’ was dispensed with as scientists realised that all genes are expressed, that is, their effect is influenced by chemical processes that are, in turn, influenced by the physical and psychosocial environment (McGowan et al. 2008). Epigenetics refers to the process within DNA in which nongenetic factors cause the organism’s genes to behave (or ‘express themselves’) differently (McGowan et al. 2008). In addition to influencing gene expression, exposure to adverse events in a child’s environment affects the development of the sympatho adrenal medullary (SAM) pathway and the hypothalamic–pituitary–adrenal (HPA) axis that determine stress responsiveness (McEwen 2008). The effects of adverse events on the HPA system are most marked when stressors are chronic, with evidence that children’s capacity to regulate physiological arousal can be altered over time. In acute stress, cortisol is elevated but soon returns to normal. With chronic stress, some children’s cortisol secretion remains high over a time rather than returning to baseline. Sustained elevated cortisol, in turn, effects children’s capacity to cope with challenge, impairs learning capacity, increases insulin resistance, suppresses growth hormones, and impairs immune competence, all of which have long-term implications for later achievement, social functioning and health status (Shonkoff et al. 2009). Furthermore, recent evidence from research using magnetic resonance imaging (MRI) and functional magnetic resonance imaging (fMRI) shows that the stimulation © 2015 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 1426–1435
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provided by care givers is fundamental to the developing brain (McEwen et al. 2012). The malleable nature of the newborn’s brain determines the way neurons become ‘wired-up’ (Belsky & Pluess 2009). This flexibility is known as plasticity, whereby brain cells modify their structure and function in response to physical and emotional stimulation (OECD, 2007). Research findings show that while plasticity can be protective when a child is exposed to stressful life events, it may also contribute to physical and emotional health problems later in life (Shonkoff 2012). The parents of children who are serious ill need a great deal of psychological support to prevent them becoming distressed, or to allay the intensity of their distress. The support given to parents will have great benefits for them and for their children. The child’s home environment will be more settled and their capacity to care for their child appropriately will be enhanced. Nurses are in a unique position as physical carers to develop a supportive relationship that may potentially reduce stress and prevent distress, which in turn will increase the likelihood of positive adaptation.
Nurse–family partnership Research evidence supports the notion that the process of information sharing where parents feel listened to, valued and respected, can assist families to clarify their concerns and identify their strengths, which can support ways of coping and renew parental confidence (Edwards et al. 2009). Equally, parents who feel judged or misunderstood are more likely to have difficulty developing a trusting relationship with nursing staff, and, are also less likely to engage in information sharing (Avis & Reardon 2008). While therapeutic communication is deemed essential and often described as the foundation on which nursing practice is based (Warelow et al. 2008), there is little research evidence evaluating how education in nursing communication is delivered or evaluated (Chant et al. 2002, Mullan & Kothe 2010). This gap is of consequence to how nurses go about their core business. For paediatric nurses building a trusting relationship is often required in very stressful and anxious circumstances and bringing qualities that promote a helping relationship with the children and parents they care for is critical. Education programmes based on the Family Advisor Model developed by Davis et al. (2002) have been promoted and adapted with the emphasis on helping families to help themselves. The nurse–family partnership model uses the qualities of respect, humility, reflective listening, and, a quiet enthusiasm, as essential to developing a
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helping relationship with the parents based on trust and characterised by exploratory questioning, sharing information and encouraging parents’ to tell their stories, and a reflective dialogue is promoted to reinforce family strengths and needs (Bidmead et al. 2002). This process has its roots in Friere’s (1999) empowerment theory driven by personal experience to overcome oppression by a mutual instigation of action for positive change. Empowerment theory has been a catalyst for worldwide programmes in literacy, education and healthcare focusing on shared information and capacity building while promoting the qualities of equality, respect and humility (WHO 2009). Literature related to community nursing settings emphasises the benefits of bringing attention to the sociodemographic and psychosocial characteristics of the families they care for through relationship building and therapeutic communication. Published findings include the evaluation of interventions in community settings in the Unites States (US) that are based on these concepts showing significant improvements in maternal and child health outcomes predominantly among young disadvantaged mothers (Olds 2006, Dawley et al. 2007). Here, using a family partnership approach nurses similarly included attention to sociodemographic and psychosocial characteristics while evaluating early intervention nursing programmes. Results showed improved physical growth and early education learning outcomes in the children, and improved mothercrafting skills and an increase in return to education and the workforce, among the mothers. In a further USA example, a home visiting programme for infants following complex heart surgery where participating mothers received support from a home visiting nurse service was evaluated (Soetenga & Mussatto 2004). Results showed that the mothers became more alert to picking up earlier signs of change in their infants condition, resulting in an improvement in timely presentation for health review and a reduction in the incidence of hypoxia-related episodes. The findings also supported improved maternal confidence and decision making (Soetenga & Mussatto 2004). In Australia, similar community-based intervention programmes have received extensive funding and experienced growth in recent years with improved attendance at school and presentation for healthcare assessment seen in participating indigenous communities (Keatinge et al. 2007, HaswellElkins et al. 2009). The family–nurse partnership initiatives in the UK have shown improved maternal and child health outcomes following teen pregnancy with increased attendance to infant health clinics and improved health promotion interventions (Piper 2011).
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Conclusion and relevance for clinical practice Family-centred care continues to be the widely accepted model for the care of children and families in hospital. However, the current model is limited because rather than keeping pace with relevant theory and research-based evidence, it continues to focus solely on attachment theory. This paper challenges the adequacy of the current model of FCC and presents an alternative model that is based on contemporary knowledge and understanding. Evidence supporting the benefits of applying a bioecological model of human development, the family and community resource framework, the concepts of allostatic load and biological embedding, empowerment theory and the nurse–family partnership model to FCC are presented and discussed. These theoretical components centre on the physical and emotional influences of the parents and family that shape the early experiences of children who have a serious illness and impact their lifelong health outcomes. It is proposed that nurses bring the knowledge and understanding of these concepts to their care of children and families in hospital. Following the nursing process, this alternative model can be used to guide the assessment, planning, implementation and evaluation of paediatric nursing care. An instrument is currently in use in paediatric hospitals worldwide that enables healthcare professionals to assess family psychosocial functioning (Kazak 2008, Schwartz 2011, Clarke 2012). There is potential to develop a psychosocial assessment instrument that is specific to the needs of paediatric nurses and families (Garg & Dworkin 2011). Such an assessment framework is the subject of research being undertaken by the authors at the present time. It is anticipated that nurses will be able to implement this framework without additional demands being placed on their time. The planning, implementation and evaluation of nursing care will be determined by information about the family’s circumstances, using the family–nurse partnership model of care. While there is no direct evidence, to date, showing that this form of care in the hospital setting is likely to improve the health and developmental outcomes of children who are seriously ill, there is a great deal of evidence from community nursing practice that suggests it is very likely to do so (Olds 2006, Dawley et al. 2007, Keatinge et al. 2007, Olds et al. 2007, Haswell-Elkins et al. 2009, Piper 2011). In essence, the theories and research-based knowledge and understanding presented in this paper have potential to underpin a theory of nursing that is relevant for all nurses irrespective of the age of the people they care for and the settings within which they work. What would set this © 2015 John Wiley & Sons Ltd Journal of Clinical Nursing, 24, 1426–1435
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Rethinking family-centred care
approach apart from many nursing theories of the past is that it is grounded in a wide range of interdisciplinary knowledge and it invites empirical scrutiny. By focusing on this model of FCC, nurses will have a great opportunity to show that nursing care makes a real difference to the health and well-being of people and their families independently from other healthcare professions.
ethical_1author.html), as follows: (1) substantial contributions to conception and design of, or acquisition of data or analysis and interpretation of data, (2) drafting the article or revising it critically for important intellectual content and (3) final approval of the version to be published.
Conflict of interest No conflict of interest to declare.
Disclosure The authors have confirmed that all authors meet the ICMJE criteria for authorship credit (www.icmje.org/
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