Erica Strudley-Brown Lifestyles are changing dramatically throughout the Western world (Knapp & Wurm 2019). In the past, attention has largely focused on the traditional model of a nuclear family and neglected diversity in family composition. Although family structures vary, many people would agree that the central purpose of the family is to create and nurture a common culture that encourages the wellbeing of the people concerned, providing physical and emotional support. The prevalence of children with life-limiting and life-threatening conditions in the UK is increasing. There has also been an increase in the last few decades of services that provide palliative and end-of-life care for children. Notwithstanding, there remains little information about the quality of care for families using these services (Fraser et al. 2020). One of the first dilemmas of having a child with a serious or life-limiting illness is the shattering experience of how to cope with something which was unexpected and how to accept, as a parent, what is unacceptable (Bally et al. 2020). Several authors write about the isolation, which parents face as they struggle to come to terms with their shock (Hinton & Kirk 2017; Smith et al. 2020). The task of coping is a process in which parents find themselves constantly adjusting to the new demands that their child’s illness makes. Each family is unique. The central purpose of the family is to create and nurture a secure and loving environment, looking after the well-being of the people concerned. Theorists describe how parents experience a distinct connection and closeness with their children, which is unparalleled in other relationships (Bohannon 1990; Bowlby 1980; Broberg 2000; Matthews & Marwit 2004). The diagnosis of a life-limiting or a life-threatening condition is likely to challenge parent ideas about nurturing and protecting their children. Consequently, parents may face intense feelings of guilt, impotence, and worthlessness (Langner & Langner 2021). Coyne et al. (2016) advocate that caring for a child with complex needs may also jeopardise family stability and their hopes for the future. Mitchell et al. (2019) argue how well families cope will be influenced by demands such as employment (or lack of it), family problems, the presence of other children, and the quality of support from partners and other family members. Many parents can vividly recall the time when they were told their child’s diagnosis (Brown 2020). They describe their initial reaction as one of extreme shock, a state that Goldman et al. (2012) liken to bereavement. Diagnosis is often a watershed between two different family lifestyles – the pre-diagnostic life with normal ‘ups and downs’ and post-diagnostic life, where parents feel that everything is at the mercy of their child’s health. Understandably, the situation is likely to cause them anxiety (Stroebe 2021; Wolfelt 2021). Not only do families have to cope with the diagnosis, but they must acknowledge that the situation will end in their child’s death. Several authors write about the isolation parents face as they struggle to come to terms with their shock (Jaaniste et al. 2017; Stroebe 2015). Family-centred care was implemented in major teaching hospitals from the late 1970s, and in 1988, Casey introduced a family-centred nursing model. Together with other models developed from the Casey (1988) principles, existing nursing models were revised and the family’s need to be involved in the care of their child was considered. Built upon the principles of partnership and negotiation, these models encourage family members to participate in assessment, planning, and delivery of care. Families often manage multiple providers of care. Given this complicated landscape, effective care-co-ordination across care providers is paramount in maintaining their child’s optimal health by avoiding fragmented or duplicated services. Together for Short Lives (2018) emphasizes the importance of an individual needs assessment for each family by the care team that will play a central coordinating role in the child’s care. The assessment will provide an important foundation for building trust, partnership, and support throughout the trajectory of the child’s illness and after their death. Assessment of the family’s needs involves ongoing in depth gathering, recording, and sharing of information, with the child and family at the heart of the process and provide the opportunity for the child and family’s hopes, wishes, and concerns to be heard and for their holistic needs including faith or spiritual wishes to be explored (Brown et al. 2021). It should empower the family and ensure that they can take control of their lives and reframe the relationship between professionals and families from professionally led care to family-led care, where families are enabled to deliver the care their child needs to make the most of the opportunities and time they have together. Turnas (2020) emphasizes the important role that the palliative care workforce plays in the implementation and co-production of care and outlines how the care skills used by staff need to be inter-linked. Many practitioners consider family-centred care to be a cornerstone of paediatric practice, yet there is no single definition of family-centred care (O’Connor 2019). One definition is, there must be a willingness on behalf of the staff to collaborate positively and respectfully with parents and families (Bevan & Bedells 2016, p25). Others interpret the concept as a list of elements of care. Thus, whilst family-centred care considers the wider needs of the child and family, in practice, this may be at a relatively superficial level, depending on the depth of the assessment and the interpretation and communication of the information received from individual families. Many families will experience multiple providers of care for their child including primary care, specialists, and education, and they may encounter barriers to accessing the support they need (Strudley-Brown 2021; Ufer et al. 2018). Aoun et al. (2020, p. 76) emphasize the importance of collaborative partnership between health professionals, patients and families when delivering and evaluating services. Notwithstanding, the same authors report that a gap remains in clinical practice between the optimal approach and the reality. Smith et al. (2018) and Jones et al. (2014) endorse this viewpoint arguing that accessibility to services is problematic for many families. Assessment will also depend on a definition of ‘family’ and whom the child considers as core members of their ‘family’. For some children, their grandparents may be the main carers, for others their parent’s partner may be a crucial support and influence, even though they are not related. The situation may be further complicated by former partner’s relatives, stepsiblings, foster carers, home care teams, etc. (Tatterton 2019). Family-centred care is grounded in the participation and involvement of the family but there is much evidence to suggest that this is not always a reality, and, in many cases, mere lip service is paid to the process. It is well recognized that experienced nursing staff are generally confident in enabling decision-making, but negotiation of care and the assessment of need may be affected by the expectations of both staff and parents, issues of control and the lack or quality of information. Family-centred care may also be less successful where resource issues such as staff shortages or poor facilities influence family involvement in care. All families need to achieve a balance between stability and change, but roles and relationships may need to alter to accommodate developments in the physical, social, or emotional life of family members (Collins et al. 2020). This means that the assessment of care must be constantly revisited. Within each of the phases of illness experienced by the child, the family will have to develop strategies for adjusting and coping. These will differ throughout the trajectory of the illness, but they may include: Several frameworks explore the adaptation process (Brown 2020); Hinton & Kirk 2017). Families vary in the ways in which they deal with stress. Factors that influence family adjustment include: Traditionally, there has existed a tension between the coping strategies adopted by parents and those preferred by professionals. Parents need to be encouraged and empowered to develop the coping strategies which are best for them. The challenge to professionals is in helping parents to develop those tactics, which will enable the strategies to work (Aoun et al. (2020)). Professionals who work with parents after their child’s diagnosis should not assume that because a family has been coping for some time they are no longer in need of constant support. The coping strategies which families learn and the skills they acquire need to be acknowledged. All parents will need:
CHAPTER 10
Holistic Care – Family Partnership in Practice
INTRODUCTION
FAMILY-CENTRED CARE
FAMILIES ADAPTING TO THEIR CHILD’S ILLNESS
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