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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 are the specific social care needs of children and young people with cerebral palsy and their family members and carers?
28.1. Introduction
It can be exceptionally demanding for families to manage the complex health, social and care needs of a child and young person with cerebral palsy. Children and young people with cerebral palsy and their families need an optimal level of support from a variety of agencies. Both parents and professionals report that it is often a challenge to be able to identify what social care support is available and even more difficult to access it.
The families need an early detailed assessment of their needs, ideally at the time of diagnosis. Recognised good practice is that families are given the information about what resources are available at that point. However, if it is too early for them to consider the implications at that point it is imperative they can access services at a later stage. This assessment should include information on support packages and respite.
Although in some parts of the UK all members of multidisciplinary teams across health, education and social services are communicating and working well together, this is unfortunately not happening universally. Lack of appropriate, timely support increases isolation and impacts on many other social difficulties for children and young people with cerebral palsy and their families. Children with Disabilities Social Workers have a statutory responsibility to offer support but access to them is variable.
There may be additional expense in caring for a child with cerebral palsy, and many families find it difficult to meet costs and maintain employment. Families can feel isolated; and they need to be provided with a framework to talk to, communicate and share concerns with other families in a similar situation.
The provision of information and appropriate equipment to enable participation should be maintained throughout the whole care pathway. There are times, particularly when rehabilitating after an intervention, when specific support may become necessary. Services should be proactive in ensuring that health and social networks are focused on the individual’s challenges at these points of care.
The aim of this evidence review is to identify the specific social care needs of children and young people with cerebral palsy and their parents and/or carers.
28.2. Description of clinical evidence
Qualitative studies were selected for inclusion for 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 themes were summarised from the literature and were not restricted to only those identified as likely themes by the Committee in the evidence review protocol. Most themes listed in the protocol were identified in the studies, apart from the need for social care assessments at the time of diagnosis. An additional theme: ‘personal support needs’, including the subthemes ‘familial support’ and ‘emotional support’, was identified in the literature and included as it is an area where social care workers can provide support.
A total of 5 studies were included in this review. As per the protocol, studies from the UK were prioritised to reflect the UK social care setting. However, non-UK studies were considered for inclusion. The following provides a brief description of the included studies:
- Two studies (Lawlor 2006, Mir & Tovey 2003) were conducted within the UK. Of these, 1 study (Lawlor 2006) was conducted in Northeast England and interviewed parents to examine the factors influencing social participation of children with cerebral palsy. One study (Mir & Tovey 2003) was conducted in the north of England with participants from South Asia and explored the experiences of South Asian parents in caring for their children with cerebral palsy.
- One study (McManus 2006) was conducted in 5 European countries: Denmark, France, Italy, Ireland and Sweden, and reported environmental concerns of parents with children who have cerebral palsy.
- One study (Capjon & Bjork 2010) was conducted in Norway, specifically in a population of children whom have multilevel surgery (a series of procedures, bony, soft tissue or both, for connection of deformities in children with cerebral palsy). Both parents and children were interviewed to obtain evidence on post-surgery rehabilitation. This study was included as no studies from the UK reported social care needs for cerebral palsy children who have had multilevel surgery.
- One study (Shimmel 2013) was conducted in Canada and included evidence of physical participation from both children with cerebral palsy and their parents. This study was included as it provided additional evidence for a number of themes.
Two studies (Lawlor 2006, Mir & Tovey 2003) collected evidence by interviews. One study (Capjon & Bjork 2010) collected evidence by semi-structured interviews. The remaining studies (McManus 2006, Shimmel 2013) used in-depth discussion groups or a mixture of focus groups and interviews.
For full details, please see the protocol in Appendix E. A brief description of the studies is provided in Table 128. See also the study selection flow chart in Appendix F, study evidence tables in Appendix J and the exclusion list in Appendix K.
Table 128
Summary of included studies.
28.2.1. Summary of included studies
Five themes were identified: physical environmental needs, familial and emotional support needs, services providing support and condition-related needs.
A summary of the studies that were included in this review is presented in Table 128.
28.3. 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/findings (clearly described, applicable and comprehensible, theory production).
An adapted GRADE approach was then used to 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 (social care needs) is presented diagrammatically in a theme map in Figure 5 in the adapted GRADE approach for qualitative findings in Table 129, Table 130 and Table 131.
Figure 5
Theme map for social care needs.
Table 129
Summary of clinical evidence (adapted GRADE approach for qualitative findings) – theme: physical environmental needs.
Table 130
Summary of clinical evidence (adapted GRADE approach for qualitative findings) – theme: familial and emotional support needs.
Table 131
Summary of clinical evidence (adapted GRADE approach for qualitative findings) – theme: services providing support.
28.4. Economic evidence
This review question is not relevant for economic analysis because it does not involve a decision between alternative courses of action.
No economic evaluations on social care needs were identified in the literature search conducted for this guideline. Full details of the search and economic article selection flow chart can be found in Appendix E and Appendix F, respectively.
28.5. Evidence statements
A number of themes emerged from the interviews, focus groups and discussion group studies. These themes centred around making living with cerebral palsy manageable for the child or young person, coping strategies for parents and children with cerebral palsy and personal preferences. The 4 overall themes were: physical environmental needs, physical support needs, services providing support and condition-specific needs.
Three studies reported on the physical environmental needs theme. Two studies reported evidence from children and young people with cerebral palsy and their parents and 1 study reported evidence from children with cerebral palsy. This theme included the subthemes: access to adequate means of transport (moderate-quality evidence), mobility and need for equipment (both low-quality evidence). These sub themes showed that children and young people with cerebral palsy and their parents experience difficulties with availability of different modes of transports available and mobility (getting around), requiring adaptions to the home and environment as well as provision of specific equipment, including wheelchairs and hoists.
Three studies reported on the theme of personal support needs. This theme included a subtheme of need for familial support (low-quality evidence) and need for emotional support (very low-quality evidence). Within the subtheme of need for emotional support, 1 study conducted in the South Asian community within northern England reported that parents found that faith and spirituality plays an important role in accepting and adjusting to their role as carers.
In total, 4 studies reported on the theme of services providing support. This theme included the subtheme: need for adequate services, equipment and support (moderate quality), which was reported by 3 studies. This subtheme found that respite care, support in the home and school, services providing equipment, financial support and lack of information relating to financial support were all important for children and young people with cerebral palsy and their parents and/or carers. An additional subtheme identified was needs relating to social participation (low-quality evidence). This subtheme from 2 studies reported that children and young people with cerebral palsy and their parents found the role of the school, siblings within schools, time needed for physical activity, doing physical activity and pain as a barrier to physical activity were all areas that were important for social participation.
One study reported on the theme of condition-related needs. This theme included 1 subtheme: needs after surgery (low-quality evidence). This subtheme found that children and young people with cerebral palsy undergoing multilevel orthopaedic surgery have specific needs during the rehabilitation period, including revision of equipment to help with personal care and mobility physiotherapy and training. Parents of these children also reported their experiences with rehabilitation. A main barrier that arose was that parents found that coping with their child’s pain was their greatest challenge and felt they received an inadequate level of care support during this period.
28.6. Evidence to recommendations
28.6.1. Relative value placed on the outcomes considered
Evidence on all of the themes relevant to the evidence review were considered important by the Committee. The themes emerging from this evidence review related to the social care needs of children with cerebral palsy and their parents and/or carers and it is important to note that information regarding condition-specific needs and services providing support is covered in section 11 of the guideline on ‘Information and support’. However, within the theme of services providing support, the subtheme of need for adequate services, equipment and support reported that parents felt there was a lack of information relating to financial support.
28.6.2. Consideration of clinical benefits and harms
The Committee considered that it was crucial to recommend a minimal level of support available for children and young people with cerebral palsy. The Committee discussed that social support at the time of diagnosis may not be universally available or it may be too emotional for the families to accept support at that stage. Therefore, the Committee recommended that ongoing access to a team of health and social care professionals should be available to children with cerebral palsy and their families, so that the child, young person or family can access information and support at the time most relevant for them. Ongoing access to care should include accessing resources, including financial support, social care, education and participation. The Committee pointed out that welfare rights and charities could also provide financial information and support.
The Committee noted that there was disparity in the UK in terms of social care provision as some areas have social care workers within the multidisciplinary team while other areas do not. There was also a lack of resources available for social care workers, particularly during the transition period (18 to 25 years). The Committee felt that it was important for there to be an integrated team working across health and social care teams as part of the multidisciplinary team.
The Committee noted that psychological support for families was very important in terms of helping the mechanisms of coping and acceptance, however they also agreed that the support available was variable and often limited. It was also noted that every local authority has a legal duty of providing care to children and their families in their area.
In terms of helping access to the physical environment, the Committee noted that it was a legal requirement to cater towards people with disabilities in the local community (including local amenities such as shops). This includes improving access and mobility support in the community, such as by providing wheelchair ramps. Additionally, there are statutory provisions such as the ‘Blue Badge’, which allows access to parking facilities for people with disabilities.
In particular the Committee, led by the child and young person and carer representatives, discussed that there can be limited access to appropriate toileting facilities for children and young people with cerebral palsy in the local community, though this was not reported in the evidence. Though there are many areas with good provision of such need, this is not universally the case throughout the UK and the Committee considered that this should be addressed.
The Committee acknowledged that information specifically about services and resources available to help access to the physical environment might be limited or not directly available to children and young people with cerebral palsy. The Committee recommended that healthcare, education and social care professionals should address the specific appropriate, individual needs of transport, mobility, specialist equipment to help with care, participation and toileting facilities for children and young people with cerebral palsy. The Committee considered it was important to highlight that the network of care should provide ongoing access to a team of healthcare and social care professionals experienced in the care of children and young people with cerebral palsy beyond a focus on mobility and posture. The network team should provide access to healthcare and social care professionals with experience in accessing wider resources for children and young people with cerebral palsy and their families, particularly in the following areas; social care and respite, financial support, educational provision, independent living as well as the problems highlighted previously of physical access.
From the experience of the Committee, support networks available for children with cerebral palsy and their families can be wider than immediate family and can include advocacy groups, charities, other carers and health professionals. For support networks and emotional support, the Committee also recognised the important role of parents, siblings and families as a whole, together with other families in similar circumstances and other carers, including nurses and school staff. Parents and professionals recognise that caring for a child or young person with cerebral palsy can also impact on their siblings, who often need their own support. Although it is important to consider the views of the whole family, all professionals should not only consider the parents’ needs but also respect the individual child or young person’s wishes and respond appropriately.
It was noted from the evidence that the family unit was shown to be important for providing emotional and support for daily living. Additionally, based on the evidence and from their experience, the Committee considered it was important to recognise the importance of social, cultural, spiritual and religious networks in providing support to children and young people with cerebral palsy and their families.
The Committee noted that respite care was very important in providing support to children and young people with cerebral palsy, their families and carers, including care in the home, NHS establishments or other setting. The Committee felt that healthcare and social care professionals should assess the need for respite care and, when appropriate, help access to respite care.
With regards to condition-specific needs, the Committee also noted that individual tailored healthcare and social care pathways to manage pain and rehabilitation are often important after a major surgical intervention (for example, after multilevel orthopaedic surgery, spinal surgery, neurosurgical intervention or gastrostomy placement). Often the re-fitting of equipment and orthoses need to be considered urgently as part of rehabilitation.
28.6.3. 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 any identified social care would incur opportunity costs.
The Committee believed that there are not enough resources devoted to social care needs. It was particularly noted that providing respite care and specialist equipment for all eligible children and young people with cerebral palsy would exceed current social care budgets. Following this, the Committee noted that reviewing the needs of children and young people with cerebral palsy would optimise their functional participation and subsequently their health-related quality of life. However, the benefits of providing such needs has not been assessed; therefore, the cost effectiveness of providing these needs cannot be ascertained. Consequently, the Committee wanted to make recommendations that identified the minimum level of support children and young people with cerebral palsy, families and carers should expect to receive. Bringing social care to this standard would incur large implementation costs; however, early and ongoing assessment could both increase the quality of life of children and young people with cerebral palsy and their families and also minimise potential risk of emergency provision.
The Committee also noted that social care needs were sometimes only assessed at the onset of diagnosis in UK clinical practice today. They also stated that the assessment of ongoing needs depended hugely by area, clinician preference, functional ability and/or age. However the child or young person with cerebral palsy’s needs and the needs of their family changed over time requiring ongoing assessment and psychological support independent of those factors. Moreover, when social care needs are re-assessed at any point after the initial assessment this generally occurs when a specific need is identified. Access is often delayed, potentially leading to further downstream costs if that need is thereby exacerbated.
Ideally, the Committee wanted each district multidisciplinary team to have access to a social worker, as this would improve the care pathway, increase satisfaction with the level of care received and help timely access to social care services. This may have a significant cost implication as social care staff levels may need to increase as their numbers are thought to be insufficient for a rearrangement in order to provide even the minimum appropriate level of social care.
It was agreed that families need information they can access at the onset of their pathway, after diagnosis has been made. Moreover access to this information needs to be provided in a number of different ways including verbal, written and digital forms. Timely information should be provided to families by their healthcare professionals, as families may not know and may not think to ask what information is available to them, especially at key times such as transition. This may incur training costs as the Committee felt healthcare professionals may not universally be up-to-date on what levels of social care are available for children and young people with cerebral palsy, or be competent to identify when social care needs exist.
28.6.4. Quality of evidence
The quality of the evidence ranged from moderate to very low. The main reasons for downgrading the evidence was data collection and/or analysis was not reported clearly and role and potential influences of researchers described.
28.6.5. Other considerations
The recommendations related to this evidence review were based on the evidence and the Committee’s clinical experience.
28.6.6. Key conclusions
The Committee discussed the following themes identified in the clinical evidence review: physical environmental needs, familial and emotional support needs, services providing support and condition-related needs. In light of these themes and their own clinical experience, the Committee agreed that addressing individual needs will promote functional participation, concluding that regular reassessment is needed as social care needs change over time.
28.7. Recommendations
- 145.
Assess the care needs of every child with cerebral palsy, and of their parents or carers, at diagnosis, and reassess regularly.
- 146.
Recognise the importance of social care needs in facilitating participation and independent living for children and young people with cerebral palsy.
- 147.
Provide information on the following topics, and direct families to where they can find further information, at diagnosis of cerebral palsy and as appropriate thereafter:
- social care services
- financial support, welfare rights and voluntary organisations
- support groups (including psychological and emotional support for the child or young person and their parents or carers and siblings)
- respite and hospice services.
- 148.
Address and review the specific needs of the child or young person with cerebral palsy in relation to accessing their physical environment (for example, home, school, healthcare, workplace, community), in order to optimise their functional participation. Think about the following aspects:
- mobility
- equipment, particularly wheelchairs and hoists
- transport
- toileting and changing facilities.
- 149.
Ensure effective communication and integrated team working between health and social care providers.
- 150.
When assessing care needs, take into account the role of any social, cultural, spiritual or religious networks that support the child or young person with cerebral palsy and their family.
- 151.
Take into account that English may not be the first language of children and young people with cerebral palsy or their parents or carers. Provide an interpreter if necessary. Follow the principles in the NICE guideline on patient experience in adult NHS services.
- 152.
Explore with the child or young person and their parents or carers the value of respite services, such as carer support either at home or in another setting.
- 153.
Ensure that individual, tailored care pathways (including pain management, rehabilitation and equipment) are in place after any major surgical intervention for children and young people with cerebral palsy (see also the NICE guideline on spasticity in under 19s).
28.8. Research recommendations (refer to NICE’s guide for research recommendation development
None identified for this topic.
- Social care needs - Cerebral palsy in under 25s: assessment and managementSocial care needs - Cerebral palsy in under 25s: assessment and management
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