Art & science | research

Support requirements of parents caring for a child with disability and complex health needs In the second of three articles about the findings of a study into the experiences of families, Mark Whiting examines their perceptions of professional and familial support Correspondence [email protected] Mark Whiting is a consultant nurse, children’s community and specialist nursing, Peace Children’s Centre, Watford, and a member of the editorial advisory board of Nursing Children and Young People Date of submission April 17 2013 Date of acceptance November 8 2013 Peer review This article has been subject to open peer review and checked using antiplagiarism software Author guidelines ncyp.rcnpublishing.com

Abstract Aim To investigate the experiences of parents of children with complex health needs in relation to the help and support they receive when caring for their child. Method A series of in-depth semi-structured interviews undertaken with the parents of 34 children (33 families) with a disability or a complex health need. Families were categorised into one of three subgroups: children with a disability, children with a life-limiting or life-threatening illness, or children with technology dependence. THIS IS THE second of three articles based on a research study about the experiences of parents of children with a disability or complex health needs (Whiting 2009). It explores the needs of parents in relation to the support they received in caring for their child.

Literature review A review of the literature identified several themes relating to the need for help and support experienced by families of children with disability and complex health needs. These involved multiagency support, key working, advocacy, emotional and psychological support, and respite. The previous article (Whiting 2014) provided detailed information of the databases searched and the terms used. Multi-agency support For children with complex health needs and disabilities, the provision of multi-agency team-based support is widely advocated 24 May 2014 | Volume 26 | Number 4

Findings In relation to parental experience of the need for help and support, two major categories were identified, namely ‘people’, and ‘processes and resources’, as well as a series of subcategories. Respite care was identified as the greatest unmet need. Conclusion Parents identified a range of helping behaviours among key professional staff involved in support provision. The greatest area of unmet needs is for respite care. Keywords Childhood disability, complex health needs, life-limiting illness, respite care, technology dependence (Kirk and Glendinning 2000, Danvers et al 2003, Townsley et al 2004, Carter et al 2007). However, studies of multi-agency support among the families of children with disabilities and complex health needs have highlighted the inadequacies of such provision rather than good practice. Kirk and Glendinning’s (2000) study of the families of 24 children described as technology dependent reported that parents thought that they often had to co-ordinate services themselves because health professionals had failed to do so. Parents raised concerns about the lack of co-ordination and communication between hospital and communitybased services. Similar concerns were apparent in a questionnaire-based study of 270 parents of children with life-limiting illness (Hunt et al 2003). Parents commented that they had to ‘fight for everything’ and many listed continuity of care as a problem, with multiple health professionals NURSING CHILDREN AND YOUNG PEOPLE

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involved in care delivery. In a subsequent study of more than 1,000 families who had a child with a life-limiting illness, Hunt et al (2013) reported that collaboration and communication between services was fragmented and that they had to repeat their story many times as a result of poor co-ordination between service providers. Similarly, Townsley et al (2004) reported that parents often had to be responsible for co-ordinating their child’s care to address the shortcomings of professional support.

2000, Hunt et al 2003, Contact-a-Family 2004, Townsley et al 2004). Hunt et al (2003) found that respite care was the greatest area of unmet need, and was reported by parents (26%) and health professionals (35%). In the same study, 58% of families said they had encountered barriers to accessing care and support all of the time or a lot of the time. All the families in Townsley et al’s (2004) study reported difficulties having time for leisure activities or accessing respite care to give them a break from caring.

Key working The introduction of the key worker or lead professional role to support children with disabilities and complex health needs has been advocated in a succession of social policy guidance going back more than 20 years (Department of Health (DH) 2004, Department for Children, Schools and Families 2007, Children and Young People’s Health Outcomes Forum 2012). Several research studies have also examined the role of the key worker in relation to this group of children (Greco et al 2005, Sloper et al 2006, Wheatley 2006, Hewitt-Taylor 2007, Marchant et al 2007). Although the research identified that parents were largely supportive of the key worker role, parental experience varied, with many reporting that their child had never been allocated a key worker.

Aim

Advocacy In the context of multi-agency support and key working, parents of children with disabilities and complex health needs have consistently identified advocacy, networking and communicating on behalf of the family as valuable roles fulfilled by a range of health professionals, including nurses, doctors and therapy staff (Cash et al 1994, Contact-a-Family 2004). Emotional and psychological support Caring for a child with disabilities and complex health needs can affect the mental and physical health of parents and other family members, as well as family relationships. Several studies have highlighted significant areas of unmet need in terms of emotional and psychological support for the families of such children (Hunt et al 2003, 2012, Contact-a-Family 2004). For instance, Townsley et al (2004) reported that parents identified a general lack of responsiveness from, and contact with, identified key workers and an overall lack of emotional support from professional staff. Respite Concerns related to lack of respite provision, and in particular the absence of regular breaks from caring, for parents and families caring for children with a disability or complex health need have been widely reported (Kirk and Glendinning NURSING CHILDREN AND YOUNG PEOPLE

To investigate how parents experience the need for help and support in caring for children with disabilities or complex health needs.

Method Parents who participated in the study were nominated by the health professionals who had them on their clinical caseloads. As detailed in the previous article (Whiting 2014), participants fell into one of three study subgroups: ■■ Children with a disability. ■■ Children with a life-limiting or life-threatening illness. ■■ Children with a technology dependence. Parental views on the need for help and support were sought through a series of one-to-one conversations that were based on a semi-structured interview schedule. The parents of 34 children from 33 families were asked: ‘How have you experienced the need for help and support in the context of your child’s disability or complex health problem?’ Interviews were recorded using a digital voice recorder and then transcribed verbatim. A qualitative approach to data collection and analysis was used. Ethical considerations Information about this was included in the previous article (Whiting 2014).

Findings Analysis of the data set led to the identification of two main categories: ‘people’ and ‘processes and resources’, and a series of subcategories (Box 1, page 26). Parents in the three subgroups reported similar experiences in terms of what they perceived as their need for support, although, as detailed in Box 1, there were a number of areas of difference between the subgroups. People Parents identified a range of people whom they considered as providers of help and support. This included family and friends, as well as people in statutory services, such as health professionals May 2014 | Volume 26 | Number 4 25

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Art & science | research Box 1 Categories and subcategories in the three study subgroups Study subgroup Disability

Life-threatening or life-limiting illness

Technology dependence

Subcategory

Category

Family; friends; employers; informal, voluntary and self-help groups; statutory services

People

Babysitters and childminders Processes and resources

Different roles; role conflict; learning; juggling

Processes and resources

Specialist and tertiary care; social services support; education; a break from caring (respite) Child development centre services and staff Medical technology

Medical technology Out-of-hours and emergency care

Box 2 Helpful characteristics and behaviours displayed by professional staff ■■ Establishment of trust in the relationship, including valuing and recognising parental instinct. ■■ Valuing relationships with families that were long lasting. ■■ Being prepared to ‘go the extra mile’ or ‘work beyond the job description’. ■■ Responding positively. ■■ Availability of out-of-hours contact, not necessarily being face-to-face, but on the end of a telephone. ■■ Providing emotional and psychological support. ■■ Practical problem solving. ■■ Being knowledgeable about the child’s condition and needs. and social workers. Parents also described specific characteristics and helping behaviours of people – particularly health, social care and education professionals – whom they identified as sources of support. Family and friends provided considerable support to families in all subgroups, and support was manifested in several ways: ■■ Providing practical help with care, although this varied greatly depending on the child’s needs. However, in the case of technology-dependent children, practical assistance was a need that family and friends were not always able to provide. ■■ Babysitting and caring for siblings to enable parents to meet the child’s needs, including attending hospital appointments and 26 May 2014 | Volume 26 | Number 4

accompanying the child during emergency or planned admissions. ■■ Providing opportunities for siblings’ leisure time. ■■ Providing emotional support, including ‘being there’ on the end of the telephone. Members of the extended family were also acknowledged as a strong source of support. However, this varied and depended on factors, such as the specific nature of a child’s disability or health need and the distance between the homes of the family and relatives. Grandmothers were highlighted as a particularly strong source of support providing, for example, regular planned care for the child or being available as an emergency back up. A range of perspectives were, however, offered, including several references to how other family members were ‘not totally confident’ (participant 1) or sometimes ‘scared’ (participants 2 and 3) to care for the child. Many parents described friendships as an important source of psychological support. ‘I think if it wasn’t for the support of my friends, it would have been really hard’ (participant 4). Another parent observed: ‘All our friends and family tell us what a good job we are doing. They are always praising us… we have a lot of support from our family and friends’ (participant 5). Professional staff representing a range of disciplines across health, education and social care were identified by parents as sources of help and support. Parents drew attention to characteristics, behaviours and actions they found supportive (Box 2). Processes and resources Parents identified a range of inter-related processes and resources that they had found supportive in providing care for their child (Box 1). A key source of support for parents in all three subgroups came from specialist and tertiary referral hospitals. These services, or more correctly, the medical, nursing and specialist health staff they employed, provided ongoing specialist support and care to children and families, often over many years. Parents identified specialist hospitals as offering a range of services including diagnostic services, specialist surgery and treatment, and long-term management and support. An important issue raised by parents in the life-limiting or life-threatening illness and the technology-dependent subgroups was the availability, or sometimes unavailability, of out-ofhours support, including dealing with problems related to medical equipment or feeding tubes. Parents cited open access to the local children’s ward as a valued source of support, but many expressed concern about the lack of out-of-hours community support. NURSING CHILDREN AND YOUNG PEOPLE

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The single greatest area of unmet need reported was respite care. However, parental needs and requirements for respite were not consistent and various factors seemed to contribute to each parent’s perception of when, where and how they might wish to experience a break from caring. Parents’ personalities were a significant factor in terms of attitudes toward respite, with some articulating how the use of respite seemed like an abdication of their responsibilities.

Discussion This study identified two main areas of parental perception of the need for help and support when caring for a child with a disability or complex health needs. People – including family, friends, health professionals and social workers – were identified as a major source of support. The second area identified was ‘processes and resources’, with specialist and tertiary hospitals cited as a key source of support for parents with children in all three categories. Parents identified the lack of out-of-hours support as a major issue, but the biggest single area of unmet need was lack of respite care. The provision of respite for the families of children with disabilities and complex health needs has been explored extensively and is widely recognized as an area of unmet need (Hunt et al 2003, Townsley et al 2004, Hewitt-Taylor 2007). Several studies have highlighted the difficulties in accessing respite for families of children whose needs are medically complex, particularly those who are technology dependent. The experiences of families reported in this study in accessing a real break from caring certainly echo those reported

previously in studies spanning the past 15 years or more (Townsley et al 2004, While et al 1996). Limitations These were discussed in the first article of the series (Whiting 2014).

Conclusion It is evident from the experience of parents in the study reported here that the greatest area of unmet need is in the provision of planned and regular breaks from caring, including regular overnight out-of-home respite and the opportunity for other members of the family to have the time to socialise and take leisure breaks. Parents identified a range of helping behaviours and personal attributes among health, social care and education professionals which they reported as positive elements of their relationships with such staff. Many of these behaviours would seem to be consistent with the characteristics of a lead professional or key worker.

Implications for practice ■■ A respite break can give parents the resilience to continue caring for their child. Many do not receive any respite and others find it difficult to accept help. ■■ Open access to the local children’s ward should be provided wherever possible because it can be a great source of out-of-hours support. ■■ It is important to establish a trusting relationship with the child’s parents, to help them solve problems, know about the child’s conditions and needs, and provide emotional and psychological support.

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Conflict of interest None declared

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Kirk S, Glendinning C (2000) Supporting Families Caring for a Technology Dependent Child. National Primary Care Research and Development Centre, Manchester. Marchant R et al (2007) ‘Necessary Stuff’: The Social Care Needs of Children with Complex Care Needs and their Families. Social Care Institute for Excellence, London.

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While A et al (1996) A Study of the Needs and Provisions for Families Caring for Children with Life-Limiting Incurable Disorders. King’s College, London. Whiting M (2009) ‘Is this my life?’ Meaning and Sense-Making as Key Determinants of Parents’ Experience When Caring for Children With Disabilities, Life-Threatening/Life-Limiting Illness or Technology Dependence. Unpublished PhD thesis, London Southbank University. Whiting M (2014) Children with disability and complex health needs: the impact on family life. Nursing Children and Young People. 26, 3, 26-30.

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Support requirements of parents caring for a child with disability and complex health needs.

To investigate the experiences of parents of children with complex health needs in relation to the help and support they receive when caring for their...
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