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National Guideline Alliance (UK). Cerebral palsy in under 25s: assessment and management. London: National Institute for Health and Care Excellence (NICE); 2017 Jan. (NICE Guideline, No. 62.)
Review question: What information and information types (written or verbal) are perceived as helpful and supportive by children and young people with cerebral palsy and their family members and carers?
11.1. Introduction
Children and young people with cerebral palsy, their parents and/or carers often report that the level of information and support available to them from healthcare and social care professionals can be very variable and this inconsistency can impact on their understanding of the condition and services provided.
The effective communication of information, providing effective support to children and young people with cerebral palsy, their family and carers plays a key role in ensuring all feel empowered and supported to maximise their potential.
The variability in how this information is provided across the UK can lead to inconsistent access to, and the take up of services and can make informed decision-making about treatment and management difficult.
Because of the perceived variation in the level of support and information given to children and young people with cerebral palsy and their parents and/or carers, the Committee considered it was important to find out what information and support children and young people with cerebral palsy, their parents and/or carers felt was necessary. In addition to this it was deemed important to standardise access to information in a standardised form and support across the country, highlighting what information and support should be available to children and young people with cerebral palsy and their families. Families need to have the right information delivered in the right format at the right time and to the right level for the individuals concerned. Sharing of such information with all relevant providers of health and social care can ensure adequate communication in patient-focused networks and pathways.
Knowledge empowers children and young people with cerebral palsy, their families and carers to take control and make informed decisions about their lives and management of their condition. This, in turn, impacts on their quality of life and ability to achieve their potential.
This guidance seeks to support health and social care services to standardise access to, and the appropriate delivery of, quality information across the country.
11.2. Description of clinical evidence
Qualitative studies were selected for inclusion in this review. We looked for studies that collected data using qualitative methods (such as semi-structured interviews, focus groups, and surveys with open-ended questions) and analysed data qualitatively (including thematic analysis, framework thematic analysis, content analysis, etc.). Survey studies restricted to reporting descriptive data that were analysed quantitatively were excluded.
Findings and/or themes were summarised from the literature and were not restricted to only those identified as likely themes listed by the Committee in the evidence review protocol. Some of the themes listed in the protocol were identified in the studies (i.e. ‘information regarding cerebral palsy’, ‘information regarding identification’, ‘cause’ and ‘prognosis of cerebral palsy or information about organisations’). Conversely, themes related with information about ‘intervention type’, ‘feeding and swallowing’, ‘pain recognition and management’, ‘transition of care’, ‘commonly used medications’, ‘named individual for point of contact’, ‘resources for managing comorbidities’ or information about ‘patient pathway and points of access’ were not identified in the literature. An additional theme: ‘increased awareness within society’ was identified in the literature and included in this review.
A total of 7 studies were included in this review (Barnfather 2011, Darrah 2002, Knis-Mattews 2011, Kruijsen-Terstra 2016, Miller 2013, Reid 2011 and Wiegerink & Verheijden 2013).
The following provides a brief description of the studies included:
- Barnfather (2011) was conducted in Canada and used semi-structured interviews in a sample of 22 young adults with a diagnosis of either cerebral palsy or spina bifida. The study reported the satisfaction with an online intervention delivered by young adults with cerebral palsy or spina bifida to the young people who participated in the semi-structured interviews. Results were reported separately for those with cerebral palsy and spina bifida.
- Darrah (2002) was conducted in Canada and used semi-structured interviews in a sample of 88 young adults. The study reported on a number of themes, including the need for information to be shared between the healthcare professionals and the families; the need to know the available resources in the community and the necessity of having individually and patient-centred information. Ultimately, the study reported on the need for increased awareness of cerebral palsy within society. Knis-Matthews (2011) was conducted in the USA and used individual interviews directed to 4 parents of children with spastic hemiplegia. The study reported in particular on the need for timely information sharing between healthcare professionals and families, especially with regard to early information. This study also reported on the need of support from other parents.
- Kruijsen-Terpstra (2016) was conducted in The Netherlands and used semi-structured interviews directed to 21 parents of young children with cerebral palsy. This study reported mostly on the need for information on cerebral palsy, and in particular on diagnosis, therapy or prognosis and development of the condition.
- Miller (2003) was conducted in the UK and used focus groups of 13 families of children with cerebral palsy. This study explored several themes, including the need for knowing information on the prognosis of cerebral palsy, special equipment or the need for information to be shared between healthcare professionals and families. This study also reported on the need for an increased awareness of cerebral palsy within society.
- Reid (2011) was conducted in Canada and used semi-structured interviews directed to a sample of 9 parents of children with cerebral palsy. The study reported on several themes, namely the need for personalised and family-centred information and the need of more information regarding access and applicability for cerebral palsy. This study also reported on the need for increased awareness of cerebral palsy within society.
- Wiegerink & Verheijden 2013 was conducted in the Netherlands and used focus groups and open interviews in 20 young adults with cerebral palsy to explore the queries these young adults have about sexuality and the way they prefer to receive information.
For full details, see the review protocol in Appendix D. See also the study selection flow chart in Appendix F, study evidence tables in Appendix J and the exclusion list in Appendix K.
11.3. Clinical evidence profile
Individual studies were assessed for methodological limitations using an adapted Critical Appraisal Skills Programme (CASP 2006) checklist for qualitative studies, where items in the original CASP checklist were adapted and fitted into 5 main quality appraisal areas according to the following criteria:
- Aim (description of aims and appropriateness of the study design).
- Sample (clear description, role of the researcher, data saturation, critical review of the researchers’ influence on the data collection).
- Rigour of data selection (method of selection, independence of participants from the researchers, appropriateness of participants).
- Data-collection analysis (clear description, how are categories or themes derived, sufficiency of presented findings, saturation in terms of analysis, the role of the researcher in the analysis, validation).
- Results and/or findings (clearly described, applicable and comprehensible, theory production).
- An adapted GRADE approach was then used to then assess the evidence by themes. Similar to GRADE in effectiveness reviews, this includes 4 domains of assessment and an overall rating:
- Limitations across studies for a particular finding or theme (using the criteria described above).
- Coherence of findings (equivalent to heterogeneity but related to unexplained differences or incoherence of descriptions).
- Applicability of evidence (equivalent to directness, i.e. how much the finding applies to our review protocol).
- Saturation or sufficiency (this related particularly to interview data and refers to whether all possible themes have been extracted or explored).
The clinical evidence profile for this review question (information and support) is presented diagrammatically in a theme map in Figure 4 and the quality of the evidence as per the adapted GRADE approach for qualitative findings is presented in Table 41, Table 42 and Table 43.
Figure 4
Theme map of the evidence.
Table 41
Summary clinical evidence profile (adapted GRADE approach for qualitative findings) - theme: increased awareness within society.
Table 42
Summary of clinical evidence (adapted GRADE approach for qualitative findings) - theme: condition-specific information.
Table 43
Summary of clinical evidence (adapted GRADE approach for qualitative findings) - theme: personalised and family-centred information.
11.4. Evidence statements
A number of themes emerged from the evidence provided from the interviews, focus groups and discussion groups with parents, children and young people with cerebral palsy. These themes centred around making information specific to cerebral palsy (for example, diagnosis, prognosis, services available) accessible at an early point of the pathway to parents and families as well as the society as a whole. Additionally, evidence related to the methods of information delivery for patients and carers was also found.
Overall, having access to clear, patient-centred information was of crucial importance for the participants of the studies. The themes that emerged after review of the literature were: ‘Increased awareness within society’, ‘condition-specific information’ and ‘personalised and family-centred information’.
11.4.1. Increased awareness within society
Four studies of moderate- to low-quality evidence reported on the theme of increased awareness within society.
In 2 of the studies, participants wanted to make cerebral palsy-specific information available for their children’s carers (teachers, service providers). Participants felt that most of the times service providers and teachers in particular, were unprepared to manage a child with cerebral palsy. They believed that more education and awareness was essential, as healthcare professionals and teachers played a pivotal role in the family’s life and child development.
In 2 of the studies, parents wanted an increased awareness of cerebral palsy for their extended ‘family and peers’, as often those were not comfortable with a person with a disability. This could help families in an indirect way (for example, by being more tolerant and conscious of their needs when they are struggling with a wheelchair) and make peers more aware of their challenges and ways to support them.
11.4.2. Condition-specific information
Four studies of moderate- to low-quality evidence reported on the theme of condition-specific information.
In the sub-theme 1, 2 of the studies described the need of information in ‘prognosis, natural history and comorbidities’. Parents were uncertain about the specific development of their child’s condition and desired more information on prognosis in general, but also about the specific types of cerebral palsy. Knowing what to expect for their child’s future and setting realistic goals were important factors for the participants of these studies.
The second sub-theme: ‘specific resources: social and educational’, reported the difficulties that parents face regarding the access to community centres or recreational services. Most of them were aware that the services were there, but were uncertain about how to access them. They needed healthcare professionals to share this information spontaneously and without being prompted by parents. Parents also highlighted the importance of provision of a specific ‘label’ or diagnosis to help access services and further support.
One study reported on a third subtheme, ‘access and applicability’: the evidence showed that parents experienced difficulties in accessing individualised specialist equipment to help with posture, mobility, care and communication, even in the absence of financial barriers. They needed more information regarding what equipment was appropriate, where to get the equipment and which equipment was available.
One last study reported on the theme of sex and sexuality related information for young adults with cerebral palsy. They preferred written information as well as using e-forums such as the Internet to find answers to their questions. In particular, they wished to communicate with other people with cerebral palsy about their experiences of sex and sexuality.
11.4.3. Personalised and family-centred information
A total of 7 studies of low- to moderate-quality evidence reported on the theme ‘personalised and family-centred information’.
Six of the studies reported on the subtheme ‘methods of information delivery’. Two of those studies described the need of support from other parents or peers. Having contact with other people who have had similar life experiences gave them a feeling of moral support and provided them with meaningful responses for their areas of uncertainties. In addition, 1 of the studies investigated young people’s experiences with an online forum group / intervention provided by peers with their same condition. Overall, young people felt they were very satisfied with this experience as it gave them a sense of belonging and helped them to understand more about themselves, their limitations and goals for the future.
Three studies reported on the need of individual, patient-centred information for the patients, their parents and families. The evidence showed that families preferred to have their needs acknowledged by the service providers and to be talked to without medical jargon. Technical language made parents, carers and patients feel intimidated and they felt uncomfortable having to constantly ask for clarification.
Five studies reported on the subtheme ‘timely sharing of information between healthcare professionals and families’. This subtheme differentiated between ‘early information’ and ‘reflective practice’. Three studies were identified reporting on early information. The evidence reflected on the difficulties that parents experienced after their child was born and on discharge from the hospital, in the group considered at high risk of developing cerebral palsy. In this process, parents advocated for a more transparent, universal and fair process. It was highlighted that some of them only found out about developmental concerns or the possibility of their child’s diagnosis by chance or in a very impersonal way. One study described the need for ongoing information throughout the children’s development and supported the necessity of ‘reflective practice’. The evidence showed that some of the healthcare professionals kept information out from the parents and gave them a false sense of security. Genuine, clear personal and individual comments were highly appreciated by the participants of the studies.
11.5. Evidence to recommendations
11.5.1. Relative value placed on the outcomes considered
The aim of this review was to identify the information and information types perceived as helpful by children and young people with cerebral palsy and their parents and/or carers. Evidence on all of the themes relevant to the evidence review question were considered important by the Committee.
11.5.2. Consideration of clinical benefits and harms
The Committee acknowledged the evidence presented and noted the significant differences in the quality of the studies. The Committee noted the theme identified in the evidence that information provided should be person-centred and they agreed that a fundamental aim for the guideline was to recommend that advice should be tailored to the individual needs of each child or young person with cerebral palsy, their families and carers. It was also noted that a childs’ developmental level will change over time and therefore this information needs to be provided according to their stage of development and reviewed at important transitions, i.e. starting school, adolescence, and transition to adult services.
The Committee drew on other NICE guidelines that contained specific recommendations about information and support, such as the NICE guidelines on Autism in under 19s and Spasticity in under 19s. The Committee discussed how a considerable amount of information is already available online for people with cerebral palsy to use, but the clarity, applicability and usefulness of this varied considerably. They agreed that it was important to direct children and young people with cerebral palsy and their families and/or carers to relevant sources according to their needs.
The Committee agreed that consistent information should be provided to children and young people with cerebral palsy and their families and carers on the following areas addressed in the guideline: aetiology, prognosis, identification, natural history, comorbidities, equipment, resources available and access to financial, respite, social care, as well as support for children, young people and their parents, carers and siblings and educational settings.
The Committee highlighted the need for integrated communication to ensure that all agencies involved in the care of the person with cerebral palsy shared information with each other, ensuring that the child, young person, families and carers had access to the same information as those involved in their wider care. This would also help to avoid the use of unclear terms and jargon. The Committee recognised that children and young people with cerebral palsy are looked after by a great variety of professionals, and that, as such, integrated communication was vital.
It was recognised that a child or young person, or parent-held ‘folder’, containing the individual’s personal information, could be an effective way of sharing upto-date information. The individual or their parent could share with this with any new agencies involved in their care. The folder would then be maintained and shared by all relevant clinical, social, and educational professionals. The Committee noted that there is a range of online options which a family could choose to share as they wished in its entirety or allow access to specific sections of the ‘folder’ as appropriate. If using an online version, hard copies could be printed off, although confidentiality and data protection issues would need careful consideration. Based on their experience and by consensus, the Committee agreed that the folder should contain information on a variety of different areas, including:
- birth and early history
- list of up-to-date medication
- the timing and outcome of any medical and surgical interventions
- comorbidities
- functional and developmental abilities, including mobility
- preferred way of communication
- what equipment was provided and was useful
- ongoing care plans
- a list of health, care and emergency contacts.
This folder could be made available for the extended family if parents, carers and the child or young person with cerebral palsy wished it.
Evidence presented to the Committee showed that 1 of the key concerns raised by families was the need to repeat medical history and other pertinent details regularly to a number of different healthcare professionals, and it was agreed that a collection of key information, such as described above, would support this. They also considered that it would support children and young people with cerebral palsy and their parents and/or carers during transition.
The lay members on the Committee specifically acknowledged the difficulties that some families and carers faced when trying to access information about specific resources, saying that access was difficult unless there was sufficient knowledge of ‘the system and the legislation’. Families need to understand the processes, their rights, the implications of legislation etc., therefore the Committee pointed out that there was also a need for information on what services are available and how to access them in order to help those in need to better navigate their way through the current system.
The Committee also mentioned that resources varied locally and over time. Resources that were available one year may not be available the following year. The Committee agreed that it was very important for people with cerebral palsy and their parents and/or carers to get support from advocacy groups. The Committee mentioned that local authorities also had the responsibility of supporting people with disability and their families; and that they should enable access to support groups to people with cerebral palsy.
The Committee also noted the further need for support and development for healthcare, social and educational professionals in understanding and responding to cerebral palsy, highlighting the core role of parents.
One of the themes identified in the evidence showed that young people wanted to have specific information about sex and sexuality. The Committee commented that patients should be supported with information and resources in a timely way. It was acknowledged that schools covered this topic in a general way, but it felt that specific advice for people with cerebral palsy was both wanted and warranted. It was recognised that in order to address this adequately, the advice needed to be tailored to the individual and if further support and advice was needed, care professionals delivering the advice should be aware of local specialists.
With regard to the way information should be provided, the Committee referred to the recommendations contained in the NICE guideline on Patient experience in adult NHS services. It also agreed on the necessary adjustments needed for severely impaired patients. For example, information should be provided in visual format if needed, ensuring a range of formats are available.
11.5.3. Consideration of economic benefits and harms
This review question was not relevant for economic analysis because it does not involve a decision between alternative courses of action. Even so, the provision of identified information and support needs may incur opportunity costs. For example, recommendations that promote a transparent dialogue require no resources to achieve, whereas adapting communication and information resources using, for example, augmentative and alternative communication systems, does require resources. The Committee stated that, under current clinical practice, information and support was often provided at the wrong time and/or in the wrong setting, leading to a wasteful use of resources if they are not utilised as intended. For example, if key decisions are made without people being fully informed, therapies prescribed without patient and family involvement in the decision may lead to non-adherence. As a result, the Committee believed their recommendations would identify information and support needs children and young people with cerebral palsy, parents and/or carers would find useful, potentially preventing an inefficient use of resources.
The Committee also believed families were unclear as to the resources available to them, potentially limiting the child or young person’s health-related quality of life. Therefore, ensuring that families and all relevant agencies have an awareness of services provided for children and young people with cerebral palsy, may lead to more timely management, potentially preventing further downstream costs from delay in service provision.
11.5.4. Quality of evidence
The quality of the evidence ranged from moderate to low. The main reasons for downgrading the evidence were: data collection and/or analysis was not clearly reported and the unclear role of the researcher in analysis and validation.
11.5.5. Other considerations
The recommendations related to this evidence review were based on the evidence and the Committee’s clinical experience.
The Committee noted the Special Education Needs and Disability Code of Practice (0–25 years).
The Committee also highlighted the importance of national support organisations such as SCOPE.
11.5.6. Key conclusions
The Committee concluded that information should be tailored to the individual needs and developmental level of the child or young person. They noted that integrated communication among the agencies involved in the care of the child was essential. They believe that this information should be shared with the child, young person and their parents and/or carers in a timely manner and without the use of technical language. A ‘folder’ containing relevant information related with the child’s or young person’s history was considered to be useful and informative for health, educational and transitional settings.
11.6. Recommendations
- 35.
Ensure that information and support focuses as much on the functional abilities of the child or young person with cerebral palsy as on any functional impairment.
- 36.
Provide clear, timely and up-to-date information to parents or carers on the following topics:
- diagnosis (see section 6.7)
- aetiology (see section 5.6)
- prognosis (see section 10.7)
- expected developmental progress
- comorbidities
- availability of specialist equipment
- resources available and access to financial, respite, social care and other support for children and young people and their parents, carers and siblings (see also recommendations 147 and 152)
- educational placement (including specialist preschool and early years settings)
- transition (see section 29.6).
- 37.
Ensure that clear information about the ‘patient pathway’ is shared with the child or young person and their parents or carers (for example, by providing them with copies of correspondence). Follow the principles in the recommendations about communication, information and shared decision-making in the NICE guideline on patient experience in adult NHS services.
- 38.
Provide information to the child or young person with cerebral palsy, and their parents or carers, on an ongoing basis. Adapt the communication methods and information resources to take account of the needs and understanding of the child or young person and their parents or carers. For example, think about using 1 or more of the following:
- oral explanations
- written information and leaflets
- mobile technology, including apps
- augmentative and alternative communication systems (see section 16.7).
- 39.
Work with the child or young person and their parents or carers to develop and maintain a personal ‘folder’ in their preferred format (electronic or otherwise) containing relevant information that can be shared with their extended family and friends and used in health, social care, educational and transition settings. Information could include:
- early history
- motor subtype and limb involvement
- functional abilities
- interventions
- medication
- comorbidities
- preferred methods of communication
- any specialist equipment that is used or needed
- care plans
- emergency contact details.
- 40.
Ensure that the child or young person and their parents or carers are provided with information, by a professional with appropriate expertise, about the following topics relevant to them that is tailored to their individual needs:
- menstruation
- fertility and contraception
- sex and sexuality
- parenting.
- 41.
Provide information to the child or young person and their parents or carers, and to all relevant teams around them, about the local and regional services available (for example, sporting clubs, respite care and specialist schools) for children and young people with cerebral palsy, and how to access them.
- 42.
Provide information about local support and advocacy groups to the child or young person and their parents or carers.
11.7. Research recommendations
None identified for this topic.
- Information and support - Cerebral palsy in under 25s: assessment and managementInformation and support - Cerebral palsy in under 25s: assessment and management
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