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Parental reaction to disability
SYMPOSIUM: SPECIAL NEEDS
Parental reaction to disability
What’s new?
Jill Kisler C
Helen McConachie C
Abstract How the diagnosis of neurodevelopmental disability is communicated to the family has long-lasting effects. When clarification of the diagnosis takes a long time, this is particularly hard for child health professionals to manage well, and a joint understanding of the process with the family is important. Guidelines for the conduct of the diagnostic consultation are presented. The impact of the child’s disability on the family depends on many factors, including the child’s behaviours, available resources and the family’s coping strategies. By understanding families’ individual differences, professionals can provide excellent health care but also help families to promote the child’s quality of life and social participation.
C
(ICF) to succeed the 1980 classification of impairment and handicaps. This framework is based upon a modified social model of disability. It focuses on activity and participation, and how to promote these for individuals with impairment in the context of the environment and personal choice. In 2007 the adapted version of ICF for children and youth was published, and participation and quality of life in young people with disability are now the focus of multi-national health research. This shift in emphasis to include both a medical and a social construct of any diagnosis is key to professionals effectively supporting families. Parents and carers look to professionals for accurate information about the characteristics and aetiology of their child’s identified impairments. At the same time, their understanding of their child’s needs and their desire to achieve a good outcome for their child in terms of relationships and achievement allows joint development of the meaning of the child’s diagnosis (Figure 1).
Keywords Coordination of care; coping strategies; diagnostic consultation; quality of life; stress
Introduction The overall prevalence of neurodevelopmental disability in childhood is difficult to ascertain due to the variety of ways in which disability has been defined and measured, and increasing rates with age. With improved survival of premature infants, and better medical care, there is a substantial requirement for health service support to children and young people with complex neurodevelopmental needs. In recent decades, both professional and carer understanding of the impact of impairment and subsequent disability has evolved from a largely medical model to an appreciation of the goals of maximizing young people’s quality of life and social participation. Guidelines have been produced regarding how to discuss the diagnosis of neurodevelopmental disability with the family; however the child and family journey through recognition of impairment through diagnosis and subsequent adaptation is complex. This review will discuss the factors affecting resolution and coping strategies, in order to offer guidance for child health clinicians in communicating effectively with families around the time of diagnosis and thereafter. In 2001 the World Health Organisation (WHO) published the International Classification of Functioning, Disability and Health
Before diagnosis In premature infants or term infants where there is an immediately recognized medical abnormality or need for intensive care, immediate issues regarding survival and medical intervention are paramount; however, parents may not appreciate the possibility that their infant may survive with long-term impairment or disability. The need to discuss possible outcomes in the neonatal period is not uncommon and where possible the consultant or most senior member of the team should be available. Junior medical staff may, however, have the initial contact with the family, particularly out of hours. Training in generic communication skills and specific scenarios (e.g. discussion of Down Syndrome, or impending premature delivery) is an essential component of both undergraduate and postgraduate medical curriculum. Communication is now integral to the RCPCH membership clinical examination. Nevertheless adherence to guidelines and best practice in communication skills may not be universal. A retrospective review of the parental satisfaction regarding disclosure of a diagnosis of Down Syndrome in the neonatal period following introduction of guidelines suggested that long-term adherence to such guidelines is difficult to sustain due to staff changes and training. A more protracted process of recognition before diagnosis is likely in the case of other developmental disabilities such as cerebral palsy, neurometabolic, neurogenetic and pervasive developmental disorders. Although concerns may be identified
Jill Kisler MBChB MRCPCH Consultant in Child Development and Neurodisability in the Department of Paediatric Neurology, Newcastle upon Tyne NHS Foundation Trust, Newcastle upon Tyne, UK. Helen McConachie MA MPhil PhD Professor of Child Clinical Psychology at Newcastle University, Institute of Health and Society, Newcastle upon Tyne, UK.
PAEDIATRICS AND CHILD HEALTH 20:7
The diagnostic consultation is understood as a joint process between clinicians and parents/carers The aims of child health services are both to give optimum health care and to help parents promote the child’s quality of life and participation, therefore multidisciplinary involvement is essential Government initiatives include the Common Assessment Framework and the Early Support Programme, promoting a consistent and coordinated approach
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Ó 2010 Elsevier Ltd. All rights reserved.
SYMPOSIUM: SPECIAL NEEDS
The following guidelines suggest an approach to diagnostic consultation (whether early or later in a child’s life), and are based on published evidence from research in health and social sciences and Department of Health guidance (Together from the Start). It must be remembered that each clinical history and child, their family, cultural and environmental situation, is different and thus professionals need to adapt accordingly.
Before diagnosis Parents’ concerns and expectations
Professionals involved Stepwise investigation
Guidelines for diagnostic consultation Other potential diagnoses
Preparatory information Understanding the family dynamics, environment and understanding of their child is important, wherever possible, accessing the shared knowledge of the whole multidisciplinary team. The clinician(s) who will be disclosing the diagnosis must have appropriate generic training in communication skills, but also full information and confidence in the diagnosis and family background. Planning the diagnostic consultation involves consideration of timing and venue, personnel present, style and content of information shared and follow-up arrangements including information provision.
Diagnostic consultation Parents’ concerns and expectations
Professionals involved
Adaption and resolution Parents’ concerns and expectations
Professionals involved
Social and environmental factors Social model
The consultation Timing: Realistic allocation of time required for detailed discussion. Ensuring that the appointment is made as soon as possible after diagnostic investigation but that all relevant information is available. Giving parents realistic time scales as to when investigation results will be available. Ensuring that the timing allows for a further follow-up appointment promptly. There should be no interruptions during the consultation.
Disorder and impairmant factors Medical model
Figure 1 The Diagnostic Journey.
Personnel present: Parents prefer where possible to hear the news together. There may be other significant family members or friends that they would also like to include e either at initial or subsequent consultation. If it is not possible to have one parent or carer at the initial consultation, then arrangements must be made to discuss this with them as soon as possible. The number of staff present should be kept to a minimum; however a key professional, such as a community nurse or therapist who has a good relationship with the family and availability for timely follow up, should be present. They may advocate for the family in prompting appropriate questions or clarifying medical information. Where an interpreter is required, this should be arranged professionally. A family member or friend is not appropriate. Care should also be taken regarding confidentiality if the interpreter is part of the family’s cultural community.
early, there may be a prolonged period of investigation or assessment prior to diagnosis, and indeed a definitive diagnosis may remain elusive. In these cases parental adaptation and reaction to the impairment may have already commenced and there may be significant clinical and social support already established. On the other hand, some parents report that they felt isolated in their concerns, or that professionals did not act upon these concerns in a timely manner. In a study of parental perception of disclosure of the diagnosis of cerebral palsy, 86% of parents reported that they were the first to suspect a problem.
Diagnostic consultation The adaptation and resolution of a family with a disabled child are dependent on many factors; however, a commonly reported significant factor affecting this is the manner and circumstances of the diagnostic consultation. Studies demonstrate that the empathy and language of the person who disclosed the diagnosis, the arrangements made for the consultation, and subsequent follow up are the key components. Qualitative studies have identified ‘see-sawing’ in negotiation between carers and professionals, where judgement is made regarding how to use language, and information and prognosis given according to perceived parental reactions. For example, where a parent is despairing the clinician may hold out more hope, whereas when parents are optimistic, the clinician may be more blunt and pessimistic.
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Style and content of information shared: Empathy, sensitivity and honesty should be conveyed during the consultation through verbal and non-verbal communication. Setting the scene at the start is important, to ensure that the parents and professionals understand the purpose of the consultation. Ask carers specifically what they understood was the purpose and specific questions they had prior to the
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Ó 2010 Elsevier Ltd. All rights reserved.
SYMPOSIUM: SPECIAL NEEDS
is complex. In the past, models suggested for understanding this have been based around bereavement adjustment. Such models, although recognizing and explaining maladaptive responses from carers, have only negative connotations. It is important for carers and clinicians to recognize that a range of emotions is to be expected; however promoting practical support to enhance family functioning and adaptation should be the focus of the team around the child. Parents need accurate information about the child’s condition and possible interventions. They are likely to be adjusting to a new perception of themselves and their child. It is essential that parents are given an opportunity soon after diagnosis to go over the information and ask questions of the same professionals, as well as receiving accurate and clearly written information. The level of support must be sustained in the time following diagnosis. Carers of young people diagnosed with autism spectrum disorder frequently report a substantial amount of professional input for assessment, but a subsequent ‘‘black hole’’ following diagnosis. On the other hand, following diagnosis, some families may be overwhelmed with professional meetings, appointments, social and therapy support, particularly if coordination and communication between different groupings is poor. The clinician may need to work hard to understand the meaning of the diagnosis to the individual family, especially where there may be ethnic or cultural differences or previous experience in the family of disability. Evidence demonstrates that issues of paramount importance to the family are feeding, sleeping, mobility, personal care and hygiene, as well as how to balance the needs of all the family members. A clinician may assume the family’s questions are centred on diagnosis, medical information and prognosis. Accurately ascertaining parent concerns is essential to supporting families and demonstrating empathy. Follow-up appointments and additional referrals should be prompt, and involvement with established parent support groups for infants with disabilities may provide significant support (Figure 2).
consultation. This agenda setting builds a platform for the whole consultation, and establishes prior level of knowledge, ideas, concerns and expectations. Use plain, understandable language and frequently check understanding by summarizing and giving opportunity to ask questions. Refer to the child, by name, as an individual (not a diagnosis) and always remain positive but realistic. Recent evidence on self-reported quality of life in young people with cerebral palsy being equal to quality of life of children without disability is a hugely powerful message for parents. Depending on age and level of cognition try to keep the child with the parents’ throughout the consultation. Where this is inappropriate, for example where the child is older, ensure provision for supervision is available and ensure that at least some explanation is given to the child as soon as possible. When disclosing a diagnosis to an older child the following must be considered and addressed. B Timing and amount of information disclosed should be decided in discussion with the parents B A suitable member of the team should be selected. B Allowing the child to have further follow-up discussions with or without parents. They may wish to select their own friend or professional to discuss issues with.
Follow up The team should recognize that much of the information shared on initial consultation may not be remembered or understood. Written information must be provided at the time of consultation to include contact details of professionals and sources of support information. Parents should be encouraged to write down further questions and contact professionals to ask them. A detailed record of the discussion should be subsequently sent to parents and copied to relevant professionals with parental consent. Sources of information for relatives, friends and carers should be available. Age appropriate information for the child and siblings is also essential. B Background medical information of child’s condition B Statutory and voluntary services (and how to access these) B Relevant websites e and information regarding searching for medical information on the internet. B Financial benefits and practical support The family should leave with a clear plan of ‘‘What happens next?’’ B Who will contact them and when B Timing of follow-up appointment to answer questions and begin a plan of support B Details of any further investigations or assessments that may be required B Other professionals that may become involved.
Coping with the child’s disability The long-term impact of the child’s disability on the family is dependent on multiple factors. Studies of the mental health of parents of children with an intellectual or physical disability have shown greater stress levels than are seen in other parents. The effect has predominantly been studied in mothers, who are most often the primary carers, although the effect on the father (often in a supporting role e emotionally and financially) is also important. Autism has been shown to have an even greater impact on parental well-being than other neurodevelopmental disabilities. Factors influencing levels of stress on the family are both intrinsic and external. The severity of the impairment is often not a predictor of the level of stress e rather it is child factors such as ill-health or behaviour problems, and lack of family and social support. Indeed this two-part pattern is also identified in acquired disability. A recent study on child and family outcome 30 months following traumatic brain injury demonstrated that although severity of injury correlated with physical and cognitive difficulties, the child and family function was predicted by psychosocial and premorbid factors.
Impact of diagnosis Parental reaction and adaptation to a diagnosis is highly variable. Understanding the emotions, reaction and subsequent resolution
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Ó 2010 Elsevier Ltd. All rights reserved.
SYMPOSIUM: SPECIAL NEEDS
Extrinsic factors
Financial support Social support Health provision Empowerment
Knowledge Intrinsic factors Parents Personality traits Knowledge Self esteem Resilience
Child Significant illness Chronic daily needs Behaviour Social interaction Sleep
Sibling Resilience Family activity Shared positive experience
Figure 2 Factors affecting coping.
Important social resources are practical and emotional support from family and friends, including the parents of other children with disabilities. Thus, if a family is isolated, services need to help to extend the social network through schemes such as link families and play schemes. Poorly coordinated services (health, education and social) can themselves be a source of stress. A ‘key worker’ approach to service provision is recommended. Services should consider how to meet the particular needs of families from minority and ethnic groups, for example, the ways in which short-term breaks are offered and arranged. The issue of equity of access is an important one for services to address. Knowledge and empowerment of parents, in particular with regard to medical information, social support and ability to problem solve reduces parental stress. This enables parents, in partnership with professionals to make choices in how services are provided. The Early Support Family File can be used by families to share information about the child’s situation with professionals, to keep track of multiple contacts, to discuss what is most important, and to make plans for the child’s care. Negotiation of an appropriate partnership with community professionals is particularly important for parents of technologically dependent children, where the parents develop high levels of expertise. Services should be provided with the aim of supporting the quality of life and participation of the whole family. Respite provided in the home setting can significantly improve this.
Financial pressures are a major external contributor to stress. There are the increased costs of caring for a child with disability e additional heating, higher telephone bills and the expense of a suitable vehicle for transport, as well as clothing and bedding, equipment and house adaptations. The families have less income than they otherwise might have had, as parents are often less able to take up employment or promotion. Despite receiving some benefits, families may experience several years of financial constraint, extending in some cases even into the period after the death of a child. It was previously believed there was an inevitable relationship between disability and family stress. Qualitative research and psychosocial models have enabled a greater understanding of the most significant stressors, the external and internal resources of family members and the cognitive coping strategies they adopt. It is important to realize that, as with any child, bringing up a child with a disability is usually a very rewarding and positive experience for a family. Nevertheless, appropriate provision of services to meet the child’s and family’s needs is essential to family and individual well-being. The main findings of the research on coping are as follows: Life events that occur in any family (for example, redundancy or the death of a grandparent) may have greater significance in a family of a disabled child. The important material resources are a car and an enclosed garden allowing play without constant supervision. The involvement of local housing departments, flexible employment arrangements for parents and access to benefits are essential.
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SYMPOSIUM: SPECIAL NEEDS
The paediatrician, although considered most helpful with issues directly related to the child’s medical condition, and providing information on developmental progress, is not widely regarded as being helpful in relation to common consequences of the impairments, such as managing behaviour problems, accessing benefits and liaising with voluntary organizations.
Bartolo PA. Communicating a diagnosis of developmental disability to parents: multiprofessional negotiation frameworks. Child Care Health Dev 2002; 28: 65e71. Beresford B. Expert opinions: a national survey of parents caring for a severely disabled child. Bristol: Policy Press, 1995. Chamba R, Ahmad W, Hirst M, Lawton D, Beresford B. On the edge: minority ethnic families caring for a severely disabled child. Bristol: Policy Press, 1999. Colver A. A shared framework and language for childhood disability. Dev Med Child Neurol 2005; 46: 780e4. Corden A, Sainsbury R, Sloper P. Financial implications of the death of a child. London: Family Policy Studies Centre, 2001. Cottrell DJ, Summers K. Communicating an evolutionary diagnosis of disability to parents. Child Care Health Dev 1990; 16: 211e8. Cunningham CC, Morgan P, Mc Gucken RB. Down’s syndrome: is dissatisfaction with disclosure of diagnosis inevitable? Dev Med Child Neurol 1984; 26: 33e9. Delve L, Samuelsson L, Tallborn A, Fasth A, Hallberg LRM. Stress and wellbeing among parents of children with rare diseases: a prospective intervention study. J Adv Nurs 2006; 53: 392e402. Dickenson HO, Parkinson KN, Ravens-Sieberer U. Self-reported quality of life of 8e12 year old children with cerebral palsy: cross sectional European study. Lancet 2007; 369: 2171e8. Fauconnier J, Dickinson H, Beckung E, et al. Participation in life situations of 8e12 year old children with cerebral palsy: cross sectional European study. BMJ 2009; 338: b1458. Graungard AH, Skov L. Why do we need a diagnosis? A qualitative study of parents’experiences, coping and needs, when the newborn child is severely disabled. Child Care Health Dev 2007; 33: 296e307. Hastings RP, Taunt HM. Positive perceptions in families of children with developmental disabilities. Am J Ment Retard 2002; 107: 116e27. Kirk S, Glendinning C. Developing services to support parents caring for a technology dependent child at home. Child Care Health Dev 2004; 30: 209e18. McConachie H. Implications of a model of stress and coping for services to families of young disabled children. Child Care Health Dev 1994; 20: 37e46. McLaughlin J. Exploring diagnostic processes: social science perspectives. Arch Dis Child 2005; 90: 284e7. Mukherjee S, Beresford B, Sloper P. Unlocking key working: an analysis and evaluation of key worker services for families with disabled children. Bristol: Policy Press, 1999. Neely-Barnes S, Marcenko M. Predicting impact of childhood disability on families: results from the 1995 National Health Interview Survey Disability Supplement. Ment Retard 2004; 42: 284e93. O’Sullivan P, Mahoney G, Robinson C. Perceptions of paediatricians’ helpfulness: a national study of mothers of young disabled children. Dev Med Child Neurol 1992; 34: 1064e71. Sanders JL, Morgan SB. Family stress and adjustment as perceived by parents of children with autism or Down syndrome: implications for intervention. Child Fam Behav Ther 1997; 19: 15e32. 13. Sloper P, Turner S. Determinants of parental satisfaction with disclosure of disability. Dev Med Child Neurol 1993; 35: 816e25. ¨ller A. Parents need for knowledge concerning the medical Starke M, Mo diagnosis of their children. J Child Health Care 2002; 6: 245e57. Vermaes IPR, Janssens JMAM, Mullart RA, Vinck A, Gerris JRM. Parents’ personality and parenting stress in families of children with spina bifida. Child Care Health Dev 2008; 34: 665e74.
Conclusion National health policy reflects information provided by the research findings summarized above. The current UK government programme, Aiming High for Disabled Children (AHDC), supports development of multi-agency working and informs health provision for young disabled people and their families. Through the Early Support Programme, information and developmental journals are available to carers and professionals. The most recent Department of Health document, Healthy Lives, Brighter Futures (2009) outlines current national policy and resources for young people with physical and intellectual disability. These programmes developed from the basis of the Children Act 2004, The National Service Framework for Children and the policy document Every Child Matters, with its emphasis that every child should be helped to be healthy, stay safe, enjoy and achieve, make a positive contribution, and achieve economic well-being. There remain significant challenges involved in meeting the needs of children with disabilities and their families. In many consultations with groups of parents, lack of facilities such as respite care and access to leisure activities is highlighted. Multiagency working, ring-fenced budgets for equipment and the provision of a key worker are implicit to the policies but implementation is patchy. The Department of Children, Schools and Families published results of questionnaire surveys carried out in 2008 and 2009, to ask parents’ views of health, education and care and family support services for their disabled child in the preceding 12 months, indicating considerable variation across the 145 local authorities and the 150 primary care trusts. Interfaces between services need to be improved for seamless provision, which means equality of access not dependent on the type of disability, postcode or chance. Training, raising awareness and methods of co-ordination must be implemented in relation to other services such as dental care and acute hospital care, support in inclusive educational settings, and planned transition of care into adolescence and adult life. Thus the diagnostic consultation is simply the start of the process of involvement of children and their families with health services and other supports. A
FURTHER READING Anderson VA, Catroppa C, Haritou F, Morse S, Rosenfeld JV. Identifying factors contributing to child and family outcome 30 months after traumatic brain injury in children. J Neurol Neurosurg Psychiatr 2005; 76: 401e8. Baird G, Scrutton D, McConachie H. Parents’ perceptions of disclosure of the diagnosis of cerebral palsy. Arch Dis Child 2000; 83: 475e80.
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SYMPOSIUM: SPECIAL NEEDS
UK GOVERNMENT WEBSITES AND DOCUMENTS Department of Children, Families and Schools. The common assessment framework, 2004, http://www.dcsf.gov.uk/everychildmatters/strategy/ deliveringservices1/caf/cafframework/; 2009 (accessed Jan 2010). Department of Children, Families and Schools. Parental experiences of services provided to disabled children: 2009e2010, http://www.dcsf. gov.uk/rsgateway/DB/STR/d000902/index.shtml (accessed Dec 2009). Department of Health. Together from the start: practical guidance for professionals working with disabled children (birth to third birthday) and their families, http://www.dh.gov.uk/en/Publicationsandstatistics/ Publications/PublicationsPolicyAndGuidance/DH_4007526; 2003 (accessed Jan 2010). Department of Health. Healthy Lives, Brighter Futures e the strategy for children and young people’s health, http://www.dh.gov.uk/en/ Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/ DH_094400; 2009 (accessed Jan 2010). Department of Health, Department for Education and Skills. National Service Framework for children, young people and maternity services. DoH Publications, 2004. www.doh.gov.uk/PolicyAndGuidance/fs/en. Every Child Matters Website, http://www.dcsf.gov.uk/everychildmatters/ (accessed Dec 2009).
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Practice points C
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The diagnostic consultation should be a joint process between clinicians and parents/carers and involve relevant professionals most well known to the family Empathy, sensitivity and honesty through verbal and non-verbal communication should be conveyed throughout the diagnostic process. Information and explanation must be provided at all stages from investigations to diagnosis and subsequent management From the start, emphasis needs to be placed on enhancing social outcomes for the child and family, in addition to understanding the impairments and planning interventions to improve function A consistent and coordinated Multidisciplinary approach is essential. This may be achieved through working within the framework of Government initiatives, including the Common Assessment Framework and the Early Support Programme
Ó 2010 Elsevier Ltd. All rights reserved.
Parental reaction to disability
What’s new?
Jill Kisler C
Helen McConachie C
Abstract How the diagnosis of neurodevelopmental disability is communicated to the family has long-lasting effects. When clarification of the diagnosis takes a long time, this is particularly hard for child health professionals to manage well, and a joint understanding of the process with the family is important. Guidelines for the conduct of the diagnostic consultation are presented. The impact of the child’s disability on the family depends on many factors, including the child’s behaviours, available resources and the family’s coping strategies. By understanding families’ individual differences, professionals can provide excellent health care but also help families to promote the child’s quality of life and social participation.
C
(ICF) to succeed the 1980 classification of impairment and handicaps. This framework is based upon a modified social model of disability. It focuses on activity and participation, and how to promote these for individuals with impairment in the context of the environment and personal choice. In 2007 the adapted version of ICF for children and youth was published, and participation and quality of life in young people with disability are now the focus of multi-national health research. This shift in emphasis to include both a medical and a social construct of any diagnosis is key to professionals effectively supporting families. Parents and carers look to professionals for accurate information about the characteristics and aetiology of their child’s identified impairments. At the same time, their understanding of their child’s needs and their desire to achieve a good outcome for their child in terms of relationships and achievement allows joint development of the meaning of the child’s diagnosis (Figure 1).
Keywords Coordination of care; coping strategies; diagnostic consultation; quality of life; stress
Introduction The overall prevalence of neurodevelopmental disability in childhood is difficult to ascertain due to the variety of ways in which disability has been defined and measured, and increasing rates with age. With improved survival of premature infants, and better medical care, there is a substantial requirement for health service support to children and young people with complex neurodevelopmental needs. In recent decades, both professional and carer understanding of the impact of impairment and subsequent disability has evolved from a largely medical model to an appreciation of the goals of maximizing young people’s quality of life and social participation. Guidelines have been produced regarding how to discuss the diagnosis of neurodevelopmental disability with the family; however the child and family journey through recognition of impairment through diagnosis and subsequent adaptation is complex. This review will discuss the factors affecting resolution and coping strategies, in order to offer guidance for child health clinicians in communicating effectively with families around the time of diagnosis and thereafter. In 2001 the World Health Organisation (WHO) published the International Classification of Functioning, Disability and Health
Before diagnosis In premature infants or term infants where there is an immediately recognized medical abnormality or need for intensive care, immediate issues regarding survival and medical intervention are paramount; however, parents may not appreciate the possibility that their infant may survive with long-term impairment or disability. The need to discuss possible outcomes in the neonatal period is not uncommon and where possible the consultant or most senior member of the team should be available. Junior medical staff may, however, have the initial contact with the family, particularly out of hours. Training in generic communication skills and specific scenarios (e.g. discussion of Down Syndrome, or impending premature delivery) is an essential component of both undergraduate and postgraduate medical curriculum. Communication is now integral to the RCPCH membership clinical examination. Nevertheless adherence to guidelines and best practice in communication skills may not be universal. A retrospective review of the parental satisfaction regarding disclosure of a diagnosis of Down Syndrome in the neonatal period following introduction of guidelines suggested that long-term adherence to such guidelines is difficult to sustain due to staff changes and training. A more protracted process of recognition before diagnosis is likely in the case of other developmental disabilities such as cerebral palsy, neurometabolic, neurogenetic and pervasive developmental disorders. Although concerns may be identified
Jill Kisler MBChB MRCPCH Consultant in Child Development and Neurodisability in the Department of Paediatric Neurology, Newcastle upon Tyne NHS Foundation Trust, Newcastle upon Tyne, UK. Helen McConachie MA MPhil PhD Professor of Child Clinical Psychology at Newcastle University, Institute of Health and Society, Newcastle upon Tyne, UK.
PAEDIATRICS AND CHILD HEALTH 20:7
The diagnostic consultation is understood as a joint process between clinicians and parents/carers The aims of child health services are both to give optimum health care and to help parents promote the child’s quality of life and participation, therefore multidisciplinary involvement is essential Government initiatives include the Common Assessment Framework and the Early Support Programme, promoting a consistent and coordinated approach
309
Ó 2010 Elsevier Ltd. All rights reserved.
SYMPOSIUM: SPECIAL NEEDS
The following guidelines suggest an approach to diagnostic consultation (whether early or later in a child’s life), and are based on published evidence from research in health and social sciences and Department of Health guidance (Together from the Start). It must be remembered that each clinical history and child, their family, cultural and environmental situation, is different and thus professionals need to adapt accordingly.
Before diagnosis Parents’ concerns and expectations
Professionals involved Stepwise investigation
Guidelines for diagnostic consultation Other potential diagnoses
Preparatory information Understanding the family dynamics, environment and understanding of their child is important, wherever possible, accessing the shared knowledge of the whole multidisciplinary team. The clinician(s) who will be disclosing the diagnosis must have appropriate generic training in communication skills, but also full information and confidence in the diagnosis and family background. Planning the diagnostic consultation involves consideration of timing and venue, personnel present, style and content of information shared and follow-up arrangements including information provision.
Diagnostic consultation Parents’ concerns and expectations
Professionals involved
Adaption and resolution Parents’ concerns and expectations
Professionals involved
Social and environmental factors Social model
The consultation Timing: Realistic allocation of time required for detailed discussion. Ensuring that the appointment is made as soon as possible after diagnostic investigation but that all relevant information is available. Giving parents realistic time scales as to when investigation results will be available. Ensuring that the timing allows for a further follow-up appointment promptly. There should be no interruptions during the consultation.
Disorder and impairmant factors Medical model
Figure 1 The Diagnostic Journey.
Personnel present: Parents prefer where possible to hear the news together. There may be other significant family members or friends that they would also like to include e either at initial or subsequent consultation. If it is not possible to have one parent or carer at the initial consultation, then arrangements must be made to discuss this with them as soon as possible. The number of staff present should be kept to a minimum; however a key professional, such as a community nurse or therapist who has a good relationship with the family and availability for timely follow up, should be present. They may advocate for the family in prompting appropriate questions or clarifying medical information. Where an interpreter is required, this should be arranged professionally. A family member or friend is not appropriate. Care should also be taken regarding confidentiality if the interpreter is part of the family’s cultural community.
early, there may be a prolonged period of investigation or assessment prior to diagnosis, and indeed a definitive diagnosis may remain elusive. In these cases parental adaptation and reaction to the impairment may have already commenced and there may be significant clinical and social support already established. On the other hand, some parents report that they felt isolated in their concerns, or that professionals did not act upon these concerns in a timely manner. In a study of parental perception of disclosure of the diagnosis of cerebral palsy, 86% of parents reported that they were the first to suspect a problem.
Diagnostic consultation The adaptation and resolution of a family with a disabled child are dependent on many factors; however, a commonly reported significant factor affecting this is the manner and circumstances of the diagnostic consultation. Studies demonstrate that the empathy and language of the person who disclosed the diagnosis, the arrangements made for the consultation, and subsequent follow up are the key components. Qualitative studies have identified ‘see-sawing’ in negotiation between carers and professionals, where judgement is made regarding how to use language, and information and prognosis given according to perceived parental reactions. For example, where a parent is despairing the clinician may hold out more hope, whereas when parents are optimistic, the clinician may be more blunt and pessimistic.
PAEDIATRICS AND CHILD HEALTH 20:7
Style and content of information shared: Empathy, sensitivity and honesty should be conveyed during the consultation through verbal and non-verbal communication. Setting the scene at the start is important, to ensure that the parents and professionals understand the purpose of the consultation. Ask carers specifically what they understood was the purpose and specific questions they had prior to the
310
Ó 2010 Elsevier Ltd. All rights reserved.
SYMPOSIUM: SPECIAL NEEDS
is complex. In the past, models suggested for understanding this have been based around bereavement adjustment. Such models, although recognizing and explaining maladaptive responses from carers, have only negative connotations. It is important for carers and clinicians to recognize that a range of emotions is to be expected; however promoting practical support to enhance family functioning and adaptation should be the focus of the team around the child. Parents need accurate information about the child’s condition and possible interventions. They are likely to be adjusting to a new perception of themselves and their child. It is essential that parents are given an opportunity soon after diagnosis to go over the information and ask questions of the same professionals, as well as receiving accurate and clearly written information. The level of support must be sustained in the time following diagnosis. Carers of young people diagnosed with autism spectrum disorder frequently report a substantial amount of professional input for assessment, but a subsequent ‘‘black hole’’ following diagnosis. On the other hand, following diagnosis, some families may be overwhelmed with professional meetings, appointments, social and therapy support, particularly if coordination and communication between different groupings is poor. The clinician may need to work hard to understand the meaning of the diagnosis to the individual family, especially where there may be ethnic or cultural differences or previous experience in the family of disability. Evidence demonstrates that issues of paramount importance to the family are feeding, sleeping, mobility, personal care and hygiene, as well as how to balance the needs of all the family members. A clinician may assume the family’s questions are centred on diagnosis, medical information and prognosis. Accurately ascertaining parent concerns is essential to supporting families and demonstrating empathy. Follow-up appointments and additional referrals should be prompt, and involvement with established parent support groups for infants with disabilities may provide significant support (Figure 2).
consultation. This agenda setting builds a platform for the whole consultation, and establishes prior level of knowledge, ideas, concerns and expectations. Use plain, understandable language and frequently check understanding by summarizing and giving opportunity to ask questions. Refer to the child, by name, as an individual (not a diagnosis) and always remain positive but realistic. Recent evidence on self-reported quality of life in young people with cerebral palsy being equal to quality of life of children without disability is a hugely powerful message for parents. Depending on age and level of cognition try to keep the child with the parents’ throughout the consultation. Where this is inappropriate, for example where the child is older, ensure provision for supervision is available and ensure that at least some explanation is given to the child as soon as possible. When disclosing a diagnosis to an older child the following must be considered and addressed. B Timing and amount of information disclosed should be decided in discussion with the parents B A suitable member of the team should be selected. B Allowing the child to have further follow-up discussions with or without parents. They may wish to select their own friend or professional to discuss issues with.
Follow up The team should recognize that much of the information shared on initial consultation may not be remembered or understood. Written information must be provided at the time of consultation to include contact details of professionals and sources of support information. Parents should be encouraged to write down further questions and contact professionals to ask them. A detailed record of the discussion should be subsequently sent to parents and copied to relevant professionals with parental consent. Sources of information for relatives, friends and carers should be available. Age appropriate information for the child and siblings is also essential. B Background medical information of child’s condition B Statutory and voluntary services (and how to access these) B Relevant websites e and information regarding searching for medical information on the internet. B Financial benefits and practical support The family should leave with a clear plan of ‘‘What happens next?’’ B Who will contact them and when B Timing of follow-up appointment to answer questions and begin a plan of support B Details of any further investigations or assessments that may be required B Other professionals that may become involved.
Coping with the child’s disability The long-term impact of the child’s disability on the family is dependent on multiple factors. Studies of the mental health of parents of children with an intellectual or physical disability have shown greater stress levels than are seen in other parents. The effect has predominantly been studied in mothers, who are most often the primary carers, although the effect on the father (often in a supporting role e emotionally and financially) is also important. Autism has been shown to have an even greater impact on parental well-being than other neurodevelopmental disabilities. Factors influencing levels of stress on the family are both intrinsic and external. The severity of the impairment is often not a predictor of the level of stress e rather it is child factors such as ill-health or behaviour problems, and lack of family and social support. Indeed this two-part pattern is also identified in acquired disability. A recent study on child and family outcome 30 months following traumatic brain injury demonstrated that although severity of injury correlated with physical and cognitive difficulties, the child and family function was predicted by psychosocial and premorbid factors.
Impact of diagnosis Parental reaction and adaptation to a diagnosis is highly variable. Understanding the emotions, reaction and subsequent resolution
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Extrinsic factors
Financial support Social support Health provision Empowerment
Knowledge Intrinsic factors Parents Personality traits Knowledge Self esteem Resilience
Child Significant illness Chronic daily needs Behaviour Social interaction Sleep
Sibling Resilience Family activity Shared positive experience
Figure 2 Factors affecting coping.
Important social resources are practical and emotional support from family and friends, including the parents of other children with disabilities. Thus, if a family is isolated, services need to help to extend the social network through schemes such as link families and play schemes. Poorly coordinated services (health, education and social) can themselves be a source of stress. A ‘key worker’ approach to service provision is recommended. Services should consider how to meet the particular needs of families from minority and ethnic groups, for example, the ways in which short-term breaks are offered and arranged. The issue of equity of access is an important one for services to address. Knowledge and empowerment of parents, in particular with regard to medical information, social support and ability to problem solve reduces parental stress. This enables parents, in partnership with professionals to make choices in how services are provided. The Early Support Family File can be used by families to share information about the child’s situation with professionals, to keep track of multiple contacts, to discuss what is most important, and to make plans for the child’s care. Negotiation of an appropriate partnership with community professionals is particularly important for parents of technologically dependent children, where the parents develop high levels of expertise. Services should be provided with the aim of supporting the quality of life and participation of the whole family. Respite provided in the home setting can significantly improve this.
Financial pressures are a major external contributor to stress. There are the increased costs of caring for a child with disability e additional heating, higher telephone bills and the expense of a suitable vehicle for transport, as well as clothing and bedding, equipment and house adaptations. The families have less income than they otherwise might have had, as parents are often less able to take up employment or promotion. Despite receiving some benefits, families may experience several years of financial constraint, extending in some cases even into the period after the death of a child. It was previously believed there was an inevitable relationship between disability and family stress. Qualitative research and psychosocial models have enabled a greater understanding of the most significant stressors, the external and internal resources of family members and the cognitive coping strategies they adopt. It is important to realize that, as with any child, bringing up a child with a disability is usually a very rewarding and positive experience for a family. Nevertheless, appropriate provision of services to meet the child’s and family’s needs is essential to family and individual well-being. The main findings of the research on coping are as follows: Life events that occur in any family (for example, redundancy or the death of a grandparent) may have greater significance in a family of a disabled child. The important material resources are a car and an enclosed garden allowing play without constant supervision. The involvement of local housing departments, flexible employment arrangements for parents and access to benefits are essential.
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The paediatrician, although considered most helpful with issues directly related to the child’s medical condition, and providing information on developmental progress, is not widely regarded as being helpful in relation to common consequences of the impairments, such as managing behaviour problems, accessing benefits and liaising with voluntary organizations.
Bartolo PA. Communicating a diagnosis of developmental disability to parents: multiprofessional negotiation frameworks. Child Care Health Dev 2002; 28: 65e71. Beresford B. Expert opinions: a national survey of parents caring for a severely disabled child. Bristol: Policy Press, 1995. Chamba R, Ahmad W, Hirst M, Lawton D, Beresford B. On the edge: minority ethnic families caring for a severely disabled child. Bristol: Policy Press, 1999. Colver A. A shared framework and language for childhood disability. Dev Med Child Neurol 2005; 46: 780e4. Corden A, Sainsbury R, Sloper P. Financial implications of the death of a child. London: Family Policy Studies Centre, 2001. Cottrell DJ, Summers K. Communicating an evolutionary diagnosis of disability to parents. Child Care Health Dev 1990; 16: 211e8. Cunningham CC, Morgan P, Mc Gucken RB. Down’s syndrome: is dissatisfaction with disclosure of diagnosis inevitable? Dev Med Child Neurol 1984; 26: 33e9. Delve L, Samuelsson L, Tallborn A, Fasth A, Hallberg LRM. Stress and wellbeing among parents of children with rare diseases: a prospective intervention study. J Adv Nurs 2006; 53: 392e402. Dickenson HO, Parkinson KN, Ravens-Sieberer U. Self-reported quality of life of 8e12 year old children with cerebral palsy: cross sectional European study. Lancet 2007; 369: 2171e8. Fauconnier J, Dickinson H, Beckung E, et al. Participation in life situations of 8e12 year old children with cerebral palsy: cross sectional European study. BMJ 2009; 338: b1458. Graungard AH, Skov L. Why do we need a diagnosis? A qualitative study of parents’experiences, coping and needs, when the newborn child is severely disabled. Child Care Health Dev 2007; 33: 296e307. Hastings RP, Taunt HM. Positive perceptions in families of children with developmental disabilities. Am J Ment Retard 2002; 107: 116e27. Kirk S, Glendinning C. Developing services to support parents caring for a technology dependent child at home. Child Care Health Dev 2004; 30: 209e18. McConachie H. Implications of a model of stress and coping for services to families of young disabled children. Child Care Health Dev 1994; 20: 37e46. McLaughlin J. Exploring diagnostic processes: social science perspectives. Arch Dis Child 2005; 90: 284e7. Mukherjee S, Beresford B, Sloper P. Unlocking key working: an analysis and evaluation of key worker services for families with disabled children. Bristol: Policy Press, 1999. Neely-Barnes S, Marcenko M. Predicting impact of childhood disability on families: results from the 1995 National Health Interview Survey Disability Supplement. Ment Retard 2004; 42: 284e93. O’Sullivan P, Mahoney G, Robinson C. Perceptions of paediatricians’ helpfulness: a national study of mothers of young disabled children. Dev Med Child Neurol 1992; 34: 1064e71. Sanders JL, Morgan SB. Family stress and adjustment as perceived by parents of children with autism or Down syndrome: implications for intervention. Child Fam Behav Ther 1997; 19: 15e32. 13. Sloper P, Turner S. Determinants of parental satisfaction with disclosure of disability. Dev Med Child Neurol 1993; 35: 816e25. ¨ller A. Parents need for knowledge concerning the medical Starke M, Mo diagnosis of their children. J Child Health Care 2002; 6: 245e57. Vermaes IPR, Janssens JMAM, Mullart RA, Vinck A, Gerris JRM. Parents’ personality and parenting stress in families of children with spina bifida. Child Care Health Dev 2008; 34: 665e74.
Conclusion National health policy reflects information provided by the research findings summarized above. The current UK government programme, Aiming High for Disabled Children (AHDC), supports development of multi-agency working and informs health provision for young disabled people and their families. Through the Early Support Programme, information and developmental journals are available to carers and professionals. The most recent Department of Health document, Healthy Lives, Brighter Futures (2009) outlines current national policy and resources for young people with physical and intellectual disability. These programmes developed from the basis of the Children Act 2004, The National Service Framework for Children and the policy document Every Child Matters, with its emphasis that every child should be helped to be healthy, stay safe, enjoy and achieve, make a positive contribution, and achieve economic well-being. There remain significant challenges involved in meeting the needs of children with disabilities and their families. In many consultations with groups of parents, lack of facilities such as respite care and access to leisure activities is highlighted. Multiagency working, ring-fenced budgets for equipment and the provision of a key worker are implicit to the policies but implementation is patchy. The Department of Children, Schools and Families published results of questionnaire surveys carried out in 2008 and 2009, to ask parents’ views of health, education and care and family support services for their disabled child in the preceding 12 months, indicating considerable variation across the 145 local authorities and the 150 primary care trusts. Interfaces between services need to be improved for seamless provision, which means equality of access not dependent on the type of disability, postcode or chance. Training, raising awareness and methods of co-ordination must be implemented in relation to other services such as dental care and acute hospital care, support in inclusive educational settings, and planned transition of care into adolescence and adult life. Thus the diagnostic consultation is simply the start of the process of involvement of children and their families with health services and other supports. A
FURTHER READING Anderson VA, Catroppa C, Haritou F, Morse S, Rosenfeld JV. Identifying factors contributing to child and family outcome 30 months after traumatic brain injury in children. J Neurol Neurosurg Psychiatr 2005; 76: 401e8. Baird G, Scrutton D, McConachie H. Parents’ perceptions of disclosure of the diagnosis of cerebral palsy. Arch Dis Child 2000; 83: 475e80.
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UK GOVERNMENT WEBSITES AND DOCUMENTS Department of Children, Families and Schools. The common assessment framework, 2004, http://www.dcsf.gov.uk/everychildmatters/strategy/ deliveringservices1/caf/cafframework/; 2009 (accessed Jan 2010). Department of Children, Families and Schools. Parental experiences of services provided to disabled children: 2009e2010, http://www.dcsf. gov.uk/rsgateway/DB/STR/d000902/index.shtml (accessed Dec 2009). Department of Health. Together from the start: practical guidance for professionals working with disabled children (birth to third birthday) and their families, http://www.dh.gov.uk/en/Publicationsandstatistics/ Publications/PublicationsPolicyAndGuidance/DH_4007526; 2003 (accessed Jan 2010). Department of Health. Healthy Lives, Brighter Futures e the strategy for children and young people’s health, http://www.dh.gov.uk/en/ Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/ DH_094400; 2009 (accessed Jan 2010). Department of Health, Department for Education and Skills. National Service Framework for children, young people and maternity services. DoH Publications, 2004. www.doh.gov.uk/PolicyAndGuidance/fs/en. Every Child Matters Website, http://www.dcsf.gov.uk/everychildmatters/ (accessed Dec 2009).
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The diagnostic consultation should be a joint process between clinicians and parents/carers and involve relevant professionals most well known to the family Empathy, sensitivity and honesty through verbal and non-verbal communication should be conveyed throughout the diagnostic process. Information and explanation must be provided at all stages from investigations to diagnosis and subsequent management From the start, emphasis needs to be placed on enhancing social outcomes for the child and family, in addition to understanding the impairments and planning interventions to improve function A consistent and coordinated Multidisciplinary approach is essential. This may be achieved through working within the framework of Government initiatives, including the Common Assessment Framework and the Early Support Programme
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