Supporting Children with Life-Limiting Conditions and their Families Research Examining Service Provision in Yorkshire and the Humber

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1 Supporting Children with Life-Limiting Conditions and their Families Research Examining Service Provision in Yorkshire and the Humber A report of research carried out by J N Research on behalf of Martin House Children s Hospice 2013

2 J N Research is an independent research organisation specialising in health and social policy research. It develops ideas, conducts high quality and ethically driven research employing a range of methodologies, and provides bespoke research training to organisations across the public, private and third sectors. J N Research 2013 First published 2013 by J N Research All rights reserved. Reproduction of this report by photocopying or electronic means for noncommercial purposes is permitted. Otherwise, no part of this report may be reproduced, adapted, stored in a retrieval system or transmitted by any means, electronic, mechanical, photocopying, or otherwise without the prior written permission of J N Research. About this Report This document contains a report of research carried out by J N Research on behalf of Martin House Children s Hospice. The original research design was developed by Sheila O Leary and Aase Somerscale of Martin House Children s Hospice, and follows on from a Service Evaluation of Martin House Children s Hospice Provision completed in 2011.

3 CONTENTS EXECUTIVE SUMMARY Background... 6 Project Aims... 6 Project Methods... 7 Key Findings... 7 Implications for Practice Background A Summary of the Literature Children with Life-Limiting Illnesses Supporting Families Paediatric Palliative Care The Project Project Aims Project Methods Phase One Understanding Paediatric Palliative Care Key informant interviews Focus group with young people Project advisory panel Narrative literature review Phase Two Mapping Regional Provision Service mapping exercise Survey of service provision Audit of Martin House referrals Exploring Families Needs for Support Family and staff interviews Analysis of interview and focus group data Research Ethics and Governance Project Findings Paediatric Palliative Care Provision Setting Parameters for Service Mapping Service Provision for Families in the Region Reflections on Mapping and Contacting Services Survey of Service Providers Survey Results...37 Page 3

4 3.6 Making Use of the Mapping and Survey Data Key Summary Points Project Findings Views of Parents and Professionals Introduction The Key Role of Specialist Paediatric Palliative Care The Importance of a Sustainable Home Life Building and Maintaining a Seamless Package of Care Assessing and Responding to Need Co-ordinating Care The Key Role of Information Transition to Adult Services Barriers to Equity and Access Project Findings Views of Young People Introduction Identifying Provision Paid carers Social and leisure activities Children s hospice and short break provision Barriers to Access Benefits, funding and cost Transport arrangements Availability and access Comparing the Accounts of Young People and Parents Summary of Key Findings Improving Paediatric Palliative Care Recommendations for Martin House Increase Provision of Specialist Medical and Nursing Care Provide Paediatric Palliative Care Training Improve Care Co-ordination for Families Raise Awareness and Understanding of Paediatric Palliative Care REFERENCES...75 Page 4

5 9 APPENDICES...79 TABLES AND FIGURES TABLES Table 1 Project Phases and Methods...18 Table 2 Service Types for Mapping and Survey...27 Table 3 Geographical Categories for Service Mapping...29 Table 4 Main Types of Services...35 Table 5 Survey Respondent Details...40 Table 6 Main Sources of Funding...41 Table 7 Details of Equivalent Adult Services...42 Table 8 End of Life Care Provision...43 Table 9 Details of Bereavement Support...43 Table 10 Details of Main Service Types Table 11 Main Components of Care for Children and Families Table 12 Barriers to Accessing Paediatric Palliative Care Table 13 Sources of Information about Service Provision FIGURES Figure 1 Three-tiered System of Paediatric Palliative Care...28 Figure 2 Map of Yorkshire and Humber by Local Authority Area...29 Figure 3 Figure 4 Figure 5 Figure 6 Proportion of National and Regional Services...30 Number of National and Regional Services by Local Authority Area Proportion of Regional Services by Local Authority Area...32 All Services by Organisational Status...33 Figure 7 National Services by Organisational Status...33 Figure 8 Regional Services by Organisation Status...34 Figure 9 Breakdown of Participants by National and Regional...38 Figure 10 Breakdown of Participants by Organisational Status Figure 11 Breakdown of Regional Participants Local Authority Area...39 Figure 12 Breakdown of Regional Participants by Status Page 5

6 A Case Study of Paediatric Palliative Care in Yorkshire and the Humber Research funded by Martin House Children s Hospice 2011 to 2013 EXECUTIVE SUMMARY BACKGROUND Life-limiting conditions is an umbrella term used to describe diseases with no reasonable hope of cure that will ultimately be fatal, (Fraser et al., 2011). It has recently been estimated that there are 49,000 children and young people (aged 0 to 19 years) living with a life-limiting condition in the UK (Fraser et al., 2011). All children diagnosed with a life-limiting condition will share the prognosis of a shortened life-expectancy. However, some children will live for only a few weeks or months whereas others will live for years and even decades (Hain et al., 2011). Due to the wide spectrum of diseases, children will follow their own distinctive illness trajectory. Children will often require life-long medication, and may need to have invasive medical procedures to help control symptoms, relieve pain, and slow disease progression (Hain et al., 2011). Some children will also require the assistance of medical devices to compensate for the failure of an organ or bodily function. Although children will spend time at hospital during their life and may have complex health care needs, the majority of children and young people will live at home, cared for in the main by their parents (Hunt et al., 2013). Consequently, the care and additional support that children with life-limiting conditions and their families might need is significant and wide ranging. Paediatric palliative care services aim to enhance a child s quality of life, adopting a holistic approach to care and providing support for the whole family (ACT, 2011). Paediatric palliative care is provided by a range of organisations across the public, private and voluntary sectors, and support will often begin at the stage of diagnosis and continue through death and bereavement. In recent years, paediatric palliative care has developed as a sub-speciality in medicine (Hain et al., 2011). There has also been an increasing interest among policy makers to develop services that better meet the care needs of seriously ill children and their families (NHS, 2013). Despite this, research continues to show that many families have unmet needs and experience extreme pressure points during their child s life and beyond, sometimes with little support from others (Craft and Killen, 2007; Hunt et al., 2013). Because of the range of organisations involved and the changing nature of care needs over a child s lifespan, the job of co-ordinating care often falls to parents (Hunt et al., 2013). However, existing studies show that parents find it difficult to navigate the system to identify what help is available and from where, and are sometimes subject to poor assessments of need and limited support from the professionals whose job it is to co-ordinate care for them (Noyes et al., 2013). PROJECT AIMS This research aims to further our understanding of the barriers to and facilitators for providing effective and appropriate palliative care and support to children and their families. Taking Yorkshire and the Humber as the focus of study, the research collected information about the range Page 6

7 of services available to children and young people with life-limiting conditions and their families living in the region. The research also explored the views of paediatric palliative care staff and families about the care and support available, and the strategies and resources families draw upon in order to access the support they need. This research aims to provide a better understanding of regional provision, therefore enabling organisations involved in supporting children with life-limiting conditions to work together in ensuring provision is accessible and equitable, and to develop services not currently available. The research examines the implications for paediatric palliative care practice, and considers the future for Martin House, as a key provider in the Yorkshire and Humber region. The implications for practice and recommendations are drawn from the findings of this research, the recent service evaluation of Martin House, and the wider paediatric palliative care literature and published studies. PROJECT METHODS The project involved three overlapping phases understanding paediatric palliative care; mapping regional provision; and exploring families needs for support. The methods used within each of the three phases are summarised in Table 1, which also provides information about the number of participants in each phase. In total, 28 parents, 12 young people, 53 paediatric palliative care experts and frontline staff, and 181 service providers took part in the research. Table 1: Project Phases and Methods Phase One Understanding Paediatric Palliative Care Interviews with 25 key informants involved in paediatric palliative care Focus group with 8 young people to discuss project and identify provision Consultation with project advisory group (n=13) and academic consultant Narrative review of paediatric palliative care literature Phase Two Mapping Regional Provision Mapping of service providers (388 organisations identified) Survey of organisations identified (274 agreed to take part, 181 returned questionnaire) Analysis of survey data to examine service types, locations, funding, referral routes, access & availability Examination of sample of referrals to Martin House (n=32) to examine referral process and referral routes Phase 3 Exploring Families Needs for Support In-depth interviews with 24 parents and 4 young people (number of families = 24, including 4 bereaved) Semi-structured interviews with 19 frontline staff (2 GPs, 6 paediatricians, 7 nurses, 4 social workers) Transcription and thematic qualitative analysis of interview data Secondary analysis of young person s focus group and key informant interview notes KEY FINDINGS 1. Identifying services in the region was an arduous and time-consuming task. The internet was a useful resource, but locating services required input from paediatric palliative care and other frontline staff; service directories; organisations involved in sign-posting and providing information; and families themselves. Staff, parents and young people also found the process of identifying what support is available as an on-going challenge and a key barrier to securing care and support that is needed. Page 7

8 2. The study confirms that a significant proportion of services are provided by voluntary sector organisations, offering a wide variety of services. Some organisations served a very small local area, and finding out about them required the knowledge of families and professionals who had become aware of them. However, many of the charities were national, supporting different groups of children and families across the UK, and having a significant online presence. However, families and staff were not always aware of the support available from national charities, despite them being identified as a key resource for some parents and young people. 3. The survey identified a range of barriers to accessing services. These included, differing referral criteria (e.g., age, condition, medical needs); short opening hours; limited transport and translation arrangements; service charges; difficulties supporting children with complex care needs; and waiting lists. Families and staff also identified differing referral criteria between service providers as a key barrier to securing support. The short-term funding and continuous changes in both the statutory and voluntary sector were identified as additional barriers to effective paediatric palliative care. 4. The lack of a shared language across the range of organisations involved in supporting families, and misunderstandings and differences in opinion about the terms life-limiting and palliative care meant that in practice, there were uncertainties about which children should be supported by whom, and at what stage in their life. Families of children without a diagnosis and those with complex healthcare needs that were difficult to define as life-limiting were reported to receive less care and support due to the restrictive referral criteria of some services. 5. There was a distinct lack of support available to families during evenings and weekends, with many services operating during normal office hours. This included some children s community and specialist nursing services, which were identified by families as a key provider of care. Families and staff identified the difficulties of accessing specialist medical and nursing care on evenings and weekends as a barrier to effectively supporting children. Acknowledging the dearth in provision, some families drew attention to the importance of continuing care provision, and the invaluable advice and emergency care available from their children s hospice. 6. Specialist end of life and bereavement care is only provided by a small minority of services identified in the research. Children s hospices were identified as the primary provider of end of life care and bereavement support in the region. Bereaved parents taking part described the support provided by their children s hospice at the end of life as invaluable. Some staff expressed concerns that families without access to a children s hospice at the end of life may not have the good death that a children s hospice is reported to help provide. 7. Families each had their own unique package of care and support, provided mainly by public and voluntary sector organisations. The arrangements in place for paid carers tended to vary, with some families using Local Authority provision; others using a private or voluntary care agency; and some using their local contacts to identify potential carers who were already known to the child or who were recommended to them. The financial resources available to families was also an important factor in securing support, with some families having to rely entirely on the hours provided as part of their care package, and others using their own money to pay for additional support. 8. Families and staff reported significant variations in the care and support offered to different families, even among those whose child had the same condition and similar needs. The factors Page 8

9 identified to contribute to this included: differences in local provision; variation in needs assessment processes; assumptions made by professionals about the needs of different types of families; parents not being able to recognise or accept that they need help; parents reservations about accessing certain services, e.g., children s hospices; assumptions made by parents about the role of social workers, e.g. focus on child protection. Staff and parents also observed variation between families with and without access to a children s hospice or special school, both of which were identified as key providers of care. 9. Parents and young people identified the importance of being able to access flexible and high quality personal and nursing care, both in the home and in other settings. Continuity of care was also important, as it was reported to help carers and families establish a trusted relationship. However, in reality the quality and continuity of care that children received was variable with many families sharing their experiences of both poor and excellent care. Consequently, the process of finding carers and service providers who supported both the child and family, and who could work flexibly around family routines was identified as a challenge, with many parents expressing anxieties about losing the valued support provided by a carer, nurse, respite provider, or children s hospice. 10. Many parents interviewed reported that the package of care they had in place was just right, providing them with the resources and energy they needed to effectively care for their child, be a parent to their children, and live a normal family life. Other parents identified unmet needs but explained that they had sufficient support in place for their family to function on a daily basis. However, a few parents were at breaking point and became very distressed as they described the limited support they received from others, and expressed uncertainty about who to ask for help. In fact, nearly all parents described having been in crisis at varying points in their child s life. Securing appropriate care and support was sometimes the only means by which families were able to recover from this. 11. Parents need a break from daily life and from providing around the clock care for their child. Respite at home and away from home was equally important. For families who accessed a children s hospice, the planned stays were an essential part of their care package, providing parents with time to rest and recoup while their children engaged in fun activities that they sometimes missed out on at home. Young people also viewed stays at a children s hospice and other short break providers as important, because it enabled them to live more independently, adopt their own daily routine, and spend time with other young people. 12. Families and staff identified the needs assessment carried out by a social worker as both a barrier and facilitator to securing support. While some parents identified their social worker as an important resource and gatekeeper to care, other parents were less positive, describing instead the constant battles with their local authority in order to secure increased hours of care, or funding for adaptations and equipment. Many families felt that their social worker lacked experience of supporting children with life-limiting conditions and had little understanding of paediatric palliative care. Social workers confirmed that this was sometimes the case, and expressed a desire to learn more about how to effectively support families. 13. Families have different needs for support depending on their own circumstances and environment, as well as their child s condition and associated symptoms. For parents, being in paid employment; having extended family support and other children; being able to drive; household Page 9

10 income; housing tenure; adequacy of space and access at home; their own physical and emotional well-being; and the relationship with their spouse or partner, were all identified to influence the type and amount of support required. Needs were also reported to shift over time as circumstances changed or when there were significant events for a family, such as a divorce, pregnancy, or for parents the loss of their own parents. 14. For parents, information was identified as one of the key resources they draw upon to help them cope with their child s diagnosis; to learn more about how to effectively care for their child; and to access the support they need. Professionals and organisations that were able to quickly signpost families to other services when a problem occurred, or when a new need became apparent, were highly valued. However, many families and staff identified this as a gap in provision that needed to be addressed, and identified a need for better information about all aspects of caring for a child with a life-limiting condition, and about the support that is available and how to access it. 15. The transition to adult services was identified as a time during which young people and parents could lose vital care and support. The lack of equivalent adult services, the different funding and transport arrangements, and the limited knowledge in adult health and social care about childhood life-limiting conditions, were identified as barriers to effectively supporting young adults. The limited opportunities for young people to engage in social and leisure activities was identified by staff, parents and young people as a key concern, with some young adults spending the majority of time at home once leaving school or college. 16. Obtaining the right package of support is crucial in helping families function and lead normal lives. For some parents this took many years of hard work and persistence, whereas other parents described it as more of a lottery. From analysing families accounts, the involvement of one service or professional who acted as a co-ordinator of care for families was the single most important factor that helped to secure the care and support children and their families required. This was sometimes a child s paediatrician, community nurse or social worker, but it could also be an allied healthcare professional, a child s special school, a service manager, or a children s hospice. An effective co-ordinator of care also helped to predict future needs a family might have, thereby preventing families reaching breaking point and enabling parents to effectively care for their child and family. IMPLICATIONS FOR PRACTICE Specialist paediatric palliative care providers, which include children s hospices and specialist clinicians and nursing teams, are highly valued by families and other service providers, offering a total approach to care from diagnosis through end of life, and specialist medical and nursing care. These services must be made available to a greater number of children with life-limiting conditions and their families. A wide range of public, private and voluntary sector organisations are involved in supporting families in daily life. However, there continues to be too much variation in the type, amount, and quality of care available. Better signposting and information about what is available; more consistent referral criteria across organisations; and access to high quality training for staff working with families is required to ensure that provision is distributed more equitably and to improve the standards of care. Page 10

11 Limited understanding and mixed opinions about paediatric palliative care can sometimes prevent families accessing key services. Working across organisational barriers to raise awareness of paediatric palliative care and establish a shared language that encompasses the wider range of organisations involved in supporting families could help to ensure that more families receive the right combination of specialist and generic support. An effective co-ordinator of care who has experience of working with children who have a lifelimiting condition and can support families over time as their needs change, is an essential component of the care families need. However, there is little formal provision for this role across the region, and many parents have no single professional with responsibility for their overall care. Establishing a regional centre of paediatric palliative care co-ordinators who can build relationships with families and work across organisational boundaries could help to ensure that more families are effectively supported in the future. Page 11

12 1 BACKGROUND A SUMMARY OF THE LITERATURE 1.1 Children with Life-Limiting Illnesses Life-limiting conditions is an umbrella term used to describe diseases with no reasonable hope of cure that will ultimately be fatal, (Fraser et al., 2011). There are over 300 conditions that are described as life-threatening or life-limiting, which fall into four broad groups of conditions developed to categorise children and young people and to describe their illness trajectory (Together for Short Lives, 2013). Not all children and young people who are known to have a life-limiting condition will receive an official diagnosis, either because their condition is so rare or because the complexity of their symptoms makes it difficult to do so (Together for Short Lives, 2013). It has recently been estimated that there are 49,000 children and young people (aged 0 to 19 years) currently living with a life-limiting condition in the UK (Fraser et al., 2011). This figure is much higher than previous estimates, which put the number at around 20,000 (Cochrane et al., 2007). It is also suggested that around 50% of childhood deaths are among children with life-limiting and lifethreatening conditions (Cochrane et al., 2007; Hain et al., 2010). Children and young people diagnosed with a life-limiting condition will share the prognosis of a shortened life-expectancy. However, some children will only live for a few weeks or months whereas others will live for years and even decades (Hain et al., 2011). Due to the wide spectrum of diseases, children will follow their own distinctive illness trajectory. As well as varying because of the underlying condition or presence of co-morbidities, the illness trajectory can also be different for children with the same disease, as seen in recent studies looking at survival rates for children with Duchenne muscular dystrophy (Pegoraro et al., 2010; Kimura et al., 2013). Children will often require life-long medication, and may need to have invasive medical procedures and other interventions to help control symptoms, relieve pain, and slow disease progression (Hain et al., 2011). Some children and young people will also require the assistance of medical devices to compensate for the loss or partial failure of an organ or bodily function (Heaton et al., 2005). Most children diagnosed with a life-limiting condition will spend time in hospital during their life (Together for Short Lives, 2013). This will tend to happen around the time of diagnosis; at various points during a child s life when there are significant health events or progression; and at the end of life when a more specialist palliative care approach may be required (Together for Short Lives, 2013). In the past, many children and young people would have spent long periods of time in hospital due to the complexity of their care needs (Noyes, 2000). However, the development of a range of portable medical devices to support children at home (Heaton et al., 2005), greater knowledge about the long-term management of childhood life-limiting conditions (Guglieri and Bushby, 2011), and a shift towards home and community-based care for children with complex healthcare needs (Kirk, 1999), has meant that children are now primarily cared for at home by their parents, and spend most of their lives outside of the hospital setting (Hunt et al., 2013). Page 12

13 Consequently, parents are increasingly taking responsibility for the management of their child s condition and providing many elements of care previously carried out by trained medical professionals (Glendinning and Kirk, 2000). Kirk (1999) highlights the social, emotional and financial impact on families of providing intensive and complex nursing care for their child (p.392), with social isolation, sleep deprivation, and feelings of stress and anxiety not uncommon (Family Fund, 2013). For children whose condition is life-limiting, parents also have to accept that their child s life will be changed forever and may well end before their own. Parents cope with this in different ways and to varying degrees (Aldridge, 2007). Some parents will continue to seek for a cure and push for aggressive treatments throughout their child s life, even at a time when these treatments offer little benefit (Gillis, 2008). Others may accept that their child will require only palliative care and symptom relief, but will find it immensely painful to do so (Rushton, 2005). Supporting families through this process, and providing parents with the assistance and resources they need to effectively care for their ill child and any other children is therefore essential. 1.2 Supporting Families The care and support children with life-limiting conditions and their families might need is significant and wide ranging, and should take into account the needs of the child, parents, and other family members. Whilst parents often come to view themselves as experts in the care of their child (Kirk and Glendinning, 2002), the availability of appropriate support is identified as an essential resource for families of children and young people who have a life-limiting condition (Nicholson, 2011; Hunt et al., 2013). As well as helping families to become more resilient by increasing the resources available to them, the right support can also reduce both the presence of stressors in families lives and the potential of those stressors to affect their quality of life (Hunt et al., 2013). The importance of having the right support is evident in many of the studies exploring the needs of families with disabled children; technology-dependent children; children with complex health care needs; and children with life-limiting condition (Nicholson, 2012), and as Craft and Killen (2007) point out can make a real difference to the quality of the lives of children and families (p.43). Although having appropriate resources and assistance to draw upon is identified as a coping resource for families, one of the key stressors parents draw attention to is the inadequate provision of care, the fragmented nature of services, and the poor communication channels with professionals and service providers (Beresford, 1994; Kirk and Glendinning, 2004; Heller and Solomon, 2005; Corlett and Twycross, 2006). Despite an increase in the number of children s hospices and community children s nursing teams across the UK, research continues to show that many families have unmet needs and experience extreme pressure points during their child s life (Craft and Killen, 2007; Hunt et al., 2013). A recent qualitative evaluation of a children s hospice found that while the support provided to families by their hospice was highly valued, parents were often at breaking point by the time they were referred for hospice care (Nicholson, 2011). The study also highlights the importance for parents of having a regular break from caring for their child, and this is confirmed Page 13

14 in a larger study of families with disabled children, which found that families are still left to reach breaking point, experience ill health and lead diminished lives as short break services are not being provided to help them care for their sons and daughters (Mencap, 2006). Allocating families with a keyworker who can navigate the system on their behalf and ensure that families are adequately supported has been promoted as a potential solution (Greco et al., 2007). However, as Noyes (2006) points out, it is difficult for a single professional to have a complete overview of a child s package of care, particularly when there is an overlap between health, social care, and education. Consequently, the role of co-ordinating care often falls to parents (Hunt et al., 2013), who report difficulties identifying what help is available and from where, and are sometimes subject to poor assessments of need and limited support from the professionals whose job it is to co-ordinate care for them (Hunt et al., 2013; Noyes et al., 2013). The difficulties families experience in accessing the right support are particularly acute when a young person makes the transition from children s to adult services (Clarke et al., 2011; Nicholson, 2012; Kirk and Fraser, 2013). Clarke et al. (2011) found that even with a key worker (or transition worker), there were high levels of unmet need and increased stress for parents. Parents emphasise the importance of living ordinary lives at home (Hunt et al., 2013). This includes taking part in social and leisure activities, as well as being able to effectively care for their child and other children in the family. For parents, enabling their child to live a full and active life is extremely important, in part because of their shortened life-expectancy but also to help compensate for the distressing and sometimes painful symptoms children and young people have to live with (Nicholson, 2011). With access to the right organisations, children and young people with lifelimiting conditions can lead fulfilling and meaningful lives (Aldridge, 2007). However, the on-going difficulties in accessing support can prevent children and parents from living a normal family life and engaging in the activities they enjoy (Noyes, 2006). To help achieve this, individual professionals involved in a child s care must work together in a collaborative relationship that extends beyond the boundaries of hospitals and institutions (Steele, 2002, p.433), and establish a web of continuing support around the whole family (Together for Short Lives, 2013). 1.3 Paediatric Palliative Care Paediatric palliative care services aim to enhance a child s life expectancy and their quality of life, adopting a holistic approach to care and providing support for the whole family (ACT (The Association for Children s Palliative Care), 2011). Palliative care planning should begin around the stage of diagnosis and continue for a number of years in order to meet the continually changing needs of the child and family. Paediatric palliative care is provided by a range of organisations across the public, private and voluntary sectors, and support will often continue through death and bereavement. Offering an array of holistic support and care provision, palliative care is described as:- Page 14

15 an active and total approach to care, from the point of diagnosis or recognition, embracing physical, emotional, social and spiritual elements through death and beyond. It focuses on enhancement of quality of life for the child/young person and support for the family and includes the management of distressing symptoms, provision of short breaks and care through death and bereavement. (ACT, 2011) A key challenge to building effective palliative care provision has been the mixed evidence regarding prevalence and need. Different estimates of the number of children with life-limiting conditions (Cochrane et al., 2007; Fraser et al., 2012) and varied approaches to diagnosing children with unknown diseases and complex healthcare needs go some way to explaining why this has proved difficult (Craft and Killen, 2007). Using inpatient Hospital Episode Statistics data, the most recent estimates of prevalence published by Fraser et al. (2012) provide a more accurate and comprehensive picture of what the needs for palliative care among children and young people in the UK might be. Examining data by child s age, condition type, ethnicity and geographical region, this study found that the highest requirement of children with life-limiting conditions for palliative care occurs in the first year of life and decreases during childhood (p.e927). However, increasing survival rates have resulted in a growth in the number of children across the age range. There is also higher prevalence among certain ethnic minority groups when compared with the white population, and within geographical areas of higher deprivation (Fraser et al., 2012). Examining prevalence by geography, Craft and Killen (2007) identified a large variation in numbers across different Strategic Health Authorities with some areas containing as many as 2641 children (age 0 19 years) with palliative care needs and others containing only 895. Fraser et al. (2011) compared prevalence by Local Authority area, which varied from 25.5 per 10,000 of the population to Better estimates of prevalence can help with planning of palliative care services, and draw attention to the potentially different funding requirements at the Local Authority level. For example, Fraser et al. (2011) point to the greater demand among certain ethnic minority populations and areas of deprivation, which tend to be clustered within distinct geographical areas. However, whilst service planning should take into account the demography of local populations, Craft and Killen (2007) note that due to the small numbers of children with life-limiting conditions in some areas, services need to be configured across a wider geographical area (p.22). Although better data on prevalence can help ensure equity of funding and provision by geography, one of the difficulties of establishing effective and sustainable services relates to the varying and multiple needs among this sub-set of children with complex healthcare needs (Craft and Killen, 2007). Important differences include the distinctive illness trajectory among children; the sheer number of different diseases that are life-limiting; the unique circumstances of family and home life; and the resources available informally to parents to enable them to effectively care for their child. Modelling need for palliative care based on estimates of prevalence could therefore be misleading, Page 15

16 and should take into account other research examining the care and support needs of families, and the illness trajectory and care pathways for particular illness groups. In recent years paediatric palliative care has developed as a sub-speciality in medicine, and Hain et al. (2011) believe that the shared vision underpinning paediatric palliative care has helped to drive the specialty forward and allowed collaboration across divides of discipline, profession, locality and sector (p.384). There has also been an increasing interest among policy makers to develop services that better meet the care needs of seriously ill children and their families (Department of Health, 2008; NHS England, 2013). For example, the 2013/14 NHS contract for paediatric palliative care services is underpinned by the broad philosophy of paediatric palliative care presented above, and sets out the aim for services to: help children and their families achieve a good life and a good death and barriers should be removed to enable the child and family to lead as ordinary a life as possible. Children should be free from distressing symptoms, and children and families should receive support to reduce the emotional and psychological effects of the child or young person s condition through the provision of optimal specialised and well-co-ordinated services. (NHS England, 2013, p.3) However despite increased investment and policy attention, paediatric palliative care is still in its infancy and Craft and Killen (2007) note that it is not yet widely recognised as a specialism in its own right (p.15). In fact a recent review of services in England revealed geographical variation across and within the different regions, with some examples of excellent practice, yet many areas in which provision was inadequate (Craft and Killen, 2007). Variation in provision was also found in a review of specialist services for children and young people with neuromuscular diseases, which revealed that patient survival is significantly reduced for some conditions in those regions of the country where comprehensive neuromuscular services are not provided (Muscular Dystrophy Campaign, 2007, p.3). As well as geographical variation, the Craft and Killen review identified access as a key problem, with varying acceptance criteria among providers, uncertainty and misunderstandings about the nature of palliative care, and reluctance among some professionals and families about accessing palliative care services. Additionally, the review drew attention to the need for more end of life care and bereavement support; both unique but integral components of palliative care. Notably, the review identified the role of voluntary organisations as vital in providing hospice and home-based community support. Craft and Killen (2007) argue that the voluntary sector, and the children s hospice movement in particular, have been leaders in the development of services and have remained a vital partner in service delivery and innovation ever since (p.16). The important role played by children s hospices is confirmed by parents and young people, who identify the support provided by their children s hospice as crucial to their quality of life (Nicholson, 2011; Kirk Page 16

17 and Pritchard, 2011). However, children s hospices provide only one albeit an essential part of a wider package of care that some families need, and although the number of children s hospices continues to expand there were only 44 registered children s hospices in the UK in 2011, many of which had differing eligibility criteria and service provision (Hallam et al., 2011). Annual mapping of children s hospice provision shows that only a proportion of children and young people in the UK who have a life-limiting condition are being supported by a children s hospice each year (Devanney et al., 2012). Because of the holistic approach underpinning paediatric palliative care, children and their families are often supported by a unique combination of specialist and core palliative care providers and universal services, the latter of who may support a wider range of children with disabilities or complex healthcare needs. Like families in other regions, families of life-limited children living in Yorkshire and the Humber are likely to be affected by the postcode lottery of service provision and practice identified by Craft and Killen (2007). This was confirmed in Nicholson s (2011) study of hospice users, with families reporting uncertainty about the role of different service providers in supporting them; limited information about the range of support available in their local area; and difficulties in accessing the support they needed. Whilst families highly valued the support provided by their children s hospice, opinions about the range of other services they had accessed were more divided, ranging from very poor to excellent. Furthering our understanding about the range and type of services available to families in our region is therefore essential if we are to develop sustainable and joined-up solutions that ensure palliative care services within the region are equitable and accessible. Page 17

18 2 THE PROJECT 2.1 Project Aims This research aims to further our understanding of the barriers to and facilitators for providing effective and appropriate palliative care and support to children and their families. Taking Yorkshire and the Humber as the focus of study, the research collected information about the range of services available to children and young people with life-limiting conditions and their families living in the region. The research also explored the views of key paediatric palliative care professionals, service provider managers, frontline staff, parents, and young people about the care and support available, and the strategies and resources families draw upon in order to access the support they need. The research aims to provide a better understanding of regional provision, therefore enabling organisations involved in supporting children with life-limiting conditions to work together in ensuring provision is accessible and equitable, and to develop services not currently available. The research examines the implications for paediatric palliative care practice, and considers the future for Martin House, as a key provider in the Yorkshire and Humber region. Table 1: Project Phases and Methods Phase One Phase Two Phase 3 Understanding Paediatric Palliative Care Interviews with 25 key informants involved in paediatric palliative care Focus group with 8 young people to discuss project and identify provision Consultation with project advisory group (n=13) and academic consultant Narrative review of paediatric palliative care literature Mapping Regional Provision Mapping of service providers (388 organisations identified) Survey of organisations identified (274 agreed to take part, 181 returned questionnaire) Analysis of survey data to examine service types, locations, funding, referral routes, access & availability Examination of sample of referrals to Martin House (n=32) to examine referral process and referral routes Exploring Families Needs for Support In-depth interviews with 24 parents and 4 young people (number of families = 24, including 4 bereaved) Semi-structured interviews with 19 frontline staff (2 GPs, 6 paediatricians, 7 nurses, 4 social workers) Transcription and thematic qualitative analysis of interview data Secondary analysis of young person s focus group and key informant interview notes 2.2 Project Methods The project involved three overlapping phases, underpinned by the different aims of the study understanding paediatric palliative care; mapping regional provision; and exploring families needs for support. The methods used within each of the three phases are summarised in Table 1, which Page 18

19 also contains information about the number of participants in each phase. In total, 28 parents; 12 young people; 53 paediatric palliative care professionals, service managers and frontline staff; and 181 service providers took part in the research. Details about each phase and the methods used are provided below. 2.3 Phase One Understanding Paediatric Palliative Care SUMMARY OF METHODS Interviews with 25 key informants involved in paediatric palliative care Focus group with 8 young people who have a life-limiting condition Consultation with project advisory group (13 members) Narrative review of paediatric palliative care literature Key informant interviews To explore current understanding of paediatric palliative care, a sample of key informants with expertise and experience of working with children and young people with life-limiting conditions were interviewed about their perceptions and understanding of paediatric palliative care, their views on the barriers and facilitators to providing effective palliative care, and their knowledge of current configuration and future developments in this evolving area of practice. A topic guide was developed to help structure the interviews and ensure that key questions were covered (see Appendix G). Key individuals in the funding organisation who were known to collaborate with paediatric palliative care providers across the UK were asked to help with identifying key informants in the region and nationally. The UK literature was also drawn upon to identify potential participants and key national charities were identified. 25 key informants were recruited and interviewed in total during the period July 2011 to December participants were based in the region, either with a strategic, management, or specialist clinical role in paediatric palliative care. The remaining 11 participants were drawn from a range of organisations involved in the promotion, research, development, and delivery of palliative care services for children and their families in the UK Focus group with young people One focus group was conducted with young adults (age 16 and over) who have a life-limiting condition. As well as consulting on the project s design and discussing how to effectively engage young people in the project, the group was asked to discuss the range of organisations involved in their lives and identify any barriers they had experienced in accessing them (see Appendix A for topics covered). The focus group was held at the weekend so that young people attending school or college could attend, and ran for two hours. One researcher led the discussion and a second researcher made notes and checked on participants consent throughout. Page 19

20 Eight young people, three females and five males, aged between 16 and 26 took part in the focus group. They had been supported by Martin House for varying lengths of time, came from different localities within the region, and had a range of conditions at different stages. The group did not include young people who had not accessed a children s hospice Project advisory panel A project steering panel was established at Martin House. Membership comprised research experts and practitioners working in the area of paediatric palliative care from across the region, and parents of children with life-limiting conditions. The aims for the steering panel were to consult on the project design and methods, and to help develop appropriate parameters and tools to facilitate effective service mapping and understanding of families needs. Five panel members were based at Martin House, as the funding organisation; three were clinicians who worked at other organisations providing paediatric palliative care in the region; one was an academic researcher with expertise in paediatric palliative care research; and four parents of children with a life-limiting condition also sat on the panel. The panel met four times during the course of the project, with meetings lasting between 1.5 and 3 hours Narrative literature review A narrative overview of the paediatric palliative care literature, and the published research and literature concerned with children and young people who have life-limiting conditions was conducted as part of this phase. This provides a comprehensive narrative syntheses of previously published information (Green et al., 2006, p.103), which is presented in the first chapter of the report as a background to the study. In summary, the review highlights the main themes running through the published literature, and presents the key findings from research already carried out. The narrative overview also included papers reporting on children with complex healthcare needs and children who are technology-dependent, which had been sourced as part of a previous narrative review conducted by the author (Nicholson, 2012). As well as providing a background to the project, this body of knowledge is also used alongside the findings from the research reported here to inform the development of implications for practice and recommendations for Martin House. 2.4 Phase Two Mapping Regional Provision SUMMARY OF METHODS Mapping exercise involving identification of 388 organisations Survey of organisations identified in mapping exercise, with 202 agreeing to take part and 181 completing a questionnaire Analysis of survey data to examine service types and locations, funding arrangements, referral routes, access and availability Page 20

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