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Research Issues in Children’s Palliative Care
Dr Nicola EatonDirector of Children’s Palliative Care and Complex Needs Research
Introduction
Size and nature of the problem Literature review Research programme Education programme Future research
Children’s Palliative Care and Complex Needs Research Team
Dr Antonia Beringer, Research Fellow Mary Lewis, Research Associate Ann O’Brien, Research Associate
Collaborators include:Dr Simon Lenton Sonia Ezergailis (ACH)Dr Fiona Finlay Lizzie Chambers (ACT)Vineeta Gupta Dr Nicky Harris (CHSW)Jacky McCallum CPC Teams around England
Palliative Care Research
Most research into palliative care is with adults
Most research into children’s palliative care is
with children with cancer
For children with non malignant conditions there is little research evidence
Definition of Children’s Palliative Care
“Palliative care is an active and total approach to care, embracing physical, emotional, social, and spiritual elements. It focuses on enhancement of quality of life for the child and support for the family and includes the management of physical symptoms, provision of respite, and care following death and bereavement. It is provided for children for whom curative treatment is no longer an option and may extend over many years.” ACT/RCPCH (2003)
(ACT = Association for Children’s Palliative Care)
ACT Groups
1. Life-threatening conditions for which curative treatment may be feasible but can fail, where access to palliative care services may be necessary when treatment fails. Children in long term remission or following successful curative treatment are not included. E.g. cancer, irreversible organ failure
2. Conditions where premature death is inevitable, where there may be long periods of intensive treatment aimed at prolonging life and allowing participation in normal activities. E.g. cystic fibrosis
3. Progressive conditions where curative treatment is exclusively palliative and may extend over many years. E.g. Batten disease, mucopolysaccharidoses, muscular dystrophy
4. Irreversible but non progressive conditions causing severe disability leading to susceptibility to health complications and premature death. E.g. severe cerebral palsy, multiple disabilities such as following brain or spinal cord injury
Size of the problem
Estimates of the prevalence of non-malignant life threatening illness in childhood
Cross sectional survey of children 0-19 years in Bath clinical area (total population 411,000)
Identified 123 children – prevalence of 1.2 per 1000 (4 times greater than previous estimates)
(Lenton et al 2000)
Prevalence data
Northern Ireland – 1.72 per 1000 (exclude malignant disease and it is 1.52 per 1000)
Calderdale and Kirklees – 1.62 per 1,000 South Glamorgan 1 per 1000 No national register (as in Cancer)
Models of care
Hospital– Palliative care – often seen as defeat or giving up– Most children want to die at home but only a few do – Care providers should recognise a need for
palliative care, assess emotional and spiritual needs of the child and family and facilitate advance care planning, assess and manage child’s pain and symptoms, and provide bereavement care
Hospice– Hospice movement – now 39 with 4 hospice at
home and 1 day care service– Not like adult hospices – ‘home from home’– Respite care mainly– Sibling and family support
Home/community– CCN teams (generalist)– Palliative care teams – e.g. Lifetime– BLF funding in 2003 (£48m)
Disease groups likely to be on a service caseload
Metabolic conditions – e.g. mucopolysaccharidoses
Diseases of the nervous system – e.g. cerebral palsy, Batten disease, spinal muscular atrophy (sma), Duchenne
muscular dystrophy Cardiac anomalies Respiratory disorders
– e.g. cystic fibrosis Chromosomal disorders
– e.g.Edwards syndrome Diseases of the immune system
– e.g. HIV Trauma
– Accidental and non-accidental injuries
Review of the research literature
Clinical Care Satisfaction with services Quality of life Parental mental health Respite care Child as participant Siblings End of Life care Community Children’s Nursing Teams
Clinical care
Symptom control– Pain – Seizures– Respiratory symptoms
Need to measure outcomes against care pathways Complementary and alternative therapies
– What is used and with what effect?– Do families tell their doctors?
Satisfaction with service
Limited evidence for care outside hospital– Different models – not evaluated– Mainly parent satisfaction
But not well defined – muddled with QoL Their perspective is different to child’s Multi dimensional concept
– Main concerns (of adults carers) Symptom control Staff competence Information provision
Quality of Life
Child– Difficult to measure in non-communicating child– Measures mainly disease specific but some generic measures
available Siblings
– Better proxy for child than parents Family
– Coping strategies used– Normality promoted– Fathers and mothers cope differently
Parental mental health
Mental health compromised– Few targeted programmes in adult literature
Respite could help – Few studies on how
Programmes to support mental health interventions not evaluated
Respite care
No studies on effects on carers or outcomes Hospices – few evaluations, mainly based on
retrospective studies of parents
Child as participant
QoL of child usually by proxy– Need to ask child and evaluate longitudinally
Sexuality of young people– Denied or neglected
Spirituality– Faith important to adults at this time
Lack of research and policy development for adolescents and young adults and at time of transition to adult care
Siblings
Interventions and outcomes not formally evaluated
Information sharing and home care important to siblings
Optimal coping strategies
End of life care
Infants who had palliative care had fewer interventions
Characteristics of a ‘good death’ from families perspective
Empowering families to be in control
Community Children’s Nursing Teams
Many different models– Need to clarify optimum structure
Training and education needs– Few courses
Key workers
Hospital or Community
Children want to be at home Parents want children to be at home
– But fearful of symptoms at death– CCN services can support
Coping strategies need to be explored– Particularly fathers
Cost effectiveness of services to keep children at home unknown
Research potential
Came about due to National Lottery Funding in 2003– Funded 71 community teams in England (and
bereavement and hospices)– £48m for three years ‘pump priming’ with PCTs
taking over funding
Children’s Palliative Care Course
Offered to all successful NOF (BLF) Teams Aims
– Teaching– Evaluation – Networking and support– Sharing protocols/guidelines etc
29 teams participated over three years
Research Programme at CCAH
National Evaluation Local evaluation Staff perspective on setting up and running a
service Impact on fathers of caring for a child with a LL
condition Complementary and Alternative Medicines NIHR Programme bid
National Evaluation
Aims– Description of services– Description of the children and families who access
these services– An assessment of the impact of these services on
family functioning and well-being
Research questions and tools developed in collaboration with course members
Tools– Team structure questionnaire– Child and family information sheet– Diversity monitoring form– Various psychological tools e.g.
PedsQL GHQ HAD PSI
Progress to date
8 teams taking part in CFI data (Ethics and R&D approvals)
Data collection in progress
Local Evaluation
Local Children’s Palliative Care Partnership– Social services (3 areas)– Lifetime Service (CCN Service)– Jessie May Trust (Hospice at Home)
Based on National Evaluation
Service Development
Funded by Queen’s Nursing Institute– Aim – to investigate CCN’s experience of setting up
a service– Method – telephone interviews– Output – guidelines – Child: Care, Health and Development article in
press
Impact on Fathers
Avon Primary Care Research Collaborative funded– Aim – to investigate and describe the impact on
fathers of having a child with a life limiting condition– Method – SS Interviews and PSI and IOF– Output – Questionnaire for future national study– At data analysis stage
Research Needed
National strategy Epidemiological studies Mixed methodologies National collaborations Economic evaluations Evaluation of interventions and training and
education
NIHR Bid
Based on ACT Integrated Multi Agency Pathway for Children with LL and LT Conditions (2004)– Charts the journey of families with a child with LL or
LT condition - key events Diagnosis, Ongoing care End of life
Identifies 5 standards along the way– Prognosis – breaking bad news– Transfer and liaison between hospital and community– Multidisciplinary assessment of needs– Child and family care plan– End of life plan
Economic evaluation BME families
Conclusion
Size and nature of the problem Literature review Research programme Education programme Future research Programme
Thank you for listening
Contact details
Dr Nicola Eaton
Tel:0117 33 10 8093
Mobile: 07971 775682
Email: [email protected]
