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Supporting Parents Supporting Children - An Assessment of the Need and Methods to Support Parents of Children
with Acquired Brain Injuries in the Community
Author: Andy Bruen
Sponsored by:
Vodafone World of Difference
May 2011
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Table of Contents 1. Background ..................................................................................................................................... 4
2. Report Focus ................................................................................................................................... 4
3. Research Methodology ................................................................................................................... 4
4. Parent Support Definition ............................................................................................................... 5
5. The Need for Parent Support and the Benefit to Parents .............................................................. 6
5.1 Coping with Stress ................................................................................................................... 6
5.2 Care Giver Wellbeing and Improved Care Giving ................................................................... 7
5.3 Reducing Isolation ................................................................................................................... 8
5.4 Problem Solving and Information Sharing ............................................................................ 10
5.5 Parental Self-Affirmation ...................................................................................................... 10
6. Current Provision .......................................................................................................................... 11
6.1 Directly after Injury ............................................................................................................... 11
6.2 Ongoing Support ................................................................................................................... 12
7. Factors Influencing the Success of Support Groups ..................................................................... 14
7.1 Logistics, Time and Geographic Dispersion........................................................................... 14
7.2 Commonality and Comparability .......................................................................................... 15
7.3 Atmosphere and Ethos.......................................................................................................... 16
7.4 The Role of Central Support .................................................................................................. 16
8. Effectiveness of Different Parent Support Options ...................................................................... 17
8.1 Meeting Based Support Groups ............................................................................................ 17
8.2 Contact Groups ..................................................................................................................... 19
8.3 Parent to Parent Partnering .................................................................................................. 20
8.4 Parent Befriending ................................................................................................................ 21
8.5 Online Forums ....................................................................................................................... 21
9. Assessment of the Options and Recommendations ..................................................................... 23
9.1 Recommendations ................................................................................................................ 25
9.2 Online Forum ........................................................................................................................ 25
9.2.1 Set Up and Operational Costs ....................................................................................... 27
9.3 Contact Groups for Parents of a Child with an ABI ............................................................... 27
9.3.1 Set Up and Operational Costs ....................................................................................... 28
9.4 Parent Support Coordinator ................................................................................................. 29
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10. Parent Support Development and Planning ............................................................................. 30
11. Profile and Awareness Building ................................................................................................ 31
11.1 Direct Parent Search – Search Engine Optimisation ............................................................. 31
11.2 Building Awareness with Intermediaries .............................................................................. 32
11.3 General Awareness Building ................................................................................................. 33
11.4 Marketing and Launch Costs ................................................................................................. 33
12. The Benefits to TCT ................................................................................................................... 34
13. Summary ................................................................................................................................... 35
References ............................................................................................................................................ 36
Appendices
Appendix A - Children’s brain injury universe calculation Appendix B - External organisation contacts Appendix C - Organisations and support services Appendix D - Profile of organisations Appendix E - Asperger and ASD UK forum user rules Appendix F - Support group set up and operating guidelines Appendix G - Examples of online forums Appendix H - Parent Support Coordinator job description Appendix I - Online forum cost breakdown Appendix J - Hospitals with paediatric neurological units Appendix K - Start up project plan
Note:
It should be recognised that this report has been written to stimulate and to inform the
debate about the best way for The Children’s Trust to support parents of children with
acquired brain injuries in the future. However, recommendations made within this report
are the opinion of the author and have been delivered with the best intentions but should
not be construed to be definitive. Decisions made by The Children’s Trust on the
development of parent support should be undertaken based on the Trust’s own research.
The author cannot be held responsible for the Trust’s actions.
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Supporting Parents Supporting Children
An Assessment of the Need and Methods to Support Parents of Children with Acquired Brain
Injuries in the Community
1. Background In the UK it is estimated that there are close to 5,000 episodes annually of traumatic brain injuries
(TBI) in children under 16 years old, which lead to long term disability1. Additionally, each year more
than 500 children acquire brain injury as a result of non-traumatic causes such as brain tumours and
meningitis2. These children and their families will then live with the resulting effects thereafter,
forming a sizeable community whose lives are affected by childhood brain injury. It is likely that the
total community in this cohort numbers in the region of 50,000 – 55,0003 (see Appendix A for basis
for this assumption). Parents who have participated in this study who have children over 16 years
old with an acquired brain injury (ABI), indicated strongly that support would be welcome well
beyond the 16 year age mark, further increasing numbers.
2. Report Focus In the context of the provision of parent support for those parents4 with a child with an ABI, this
report seeks to establish:
What support currently exists for these families;
What are the challenges that they face;
What are the families’ needs; and
What are the practical steps that can be undertaken by The Children’s Trust (TCT) to provide
increased support in the future.
3. Research Methodology A broad based approach to the research has been used to ensure that the views of parents and care
providers have been considered, together with a study of the supporting mechanisms used by
organisations operating in other comparable health areas. A review of relevant literature centred on
parent support in a variety of settings has also been undertaken.
1 Based on an extrapolation from NICE statistics (2007) which assumes that in this context children are up to 16
years of age 2 There are c.300-400 instances of brain tumours alone diagnosed in children each year, many of whom will
suffer brain injury as a result (BUPA, 2011; Macmillan Cancer Support, 2011). Instances of ABI derived from all non-traumatic causes are not centrally recorded and numbers are hard to assess 3 Based on NICE age related figures for children’s brain injuries (2007)
4 This support is not necessarily limited to parents but could encompass other care givers and guardians
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Extensive interviews were conducted with clinical, therapeutic, operational and family support staff
at TCT as well as those working in other organisations (see Appendix B for list of external contacts).
Desk top research was performed on relevant organisations and in most instances contact was made
with the individual responsible for parent support to substantiate the service levels and obtain
opinions as to the merits and challenges of different approaches. The majority of individuals offered
candid views about the performance of their organisations. A list of organisations and their support
services is shown in Appendix C and further organisational profiles are provided in Appendix D.
Due to the requirement to observe research protocols when directly soliciting information from
parents5, only a limited number of parents were directly interviewed in the study. The five parents
who were interviewed had volunteered to support TCT in the development of services and came
forward when they became aware of this study. They are referred to as Parent 1 – Parent 5 in the
report. Information was used from previous research undertaken with 11 parents by Eileen
Hammond in Oct/Dec 2009 on behalf of TCT, and from other research studies including a doctoral
thesis by Graham Williams, again in partnership with TCT, investigating the experience of 16 parents
(eight couples) whose children had sustained an ABI. While it would have been preferable to
interview more parents directly, it is not felt that the validity of the study is compromised as in total
32 parents linked to TCT have helped to inform this report and there has been a consistency of
messaging from parents from the different sources within the study including the reviewed research.
4. Parent Support Definition A broad definition of parent support has been used in this study and encompasses a number of
different formats. The traditional perception may be that of support groups meeting monthly over
tea and biscuits. This format still exists, but other increasingly prevalent formats are emerging such
as contact groups, parent to parent partnering, befriending schemes and online forums. These will
be expanded upon in due course but a brief description is provided below:
Meeting based parent
support groups (MBSG)
- Group meetings are typically held monthly or bi-monthly led by a
group leader, with open discussion and occasional specialist talks
Contact Groups - A regional group that communicates through a locally held email
database giving opportunity for people to ask questions on local
issues and also to seek local contacts if desired. Sometimes these
groups will arrange family events once or twice a year
5 Ethics Committee clearance would have been required to perform direct research with parents which was
not practical in the timeframes for the study
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Parent to parent
partnering (PTPP)
- Parents are offered the opportunity to be partnered with another
parent to provide ongoing mutual support. The level of contact is
determined by the participants
Befriending Programme - Befriending services are provided by trained parents who have
direct experience with a condition or have a relative who has a
disability. Levels of contact are determined by the participants
Online Forum - Online forums are communities accessed online whereby people
with a condition or family members can seek advice or fellowship
5. The Need for Parent Support and the Benefit to Parents While there is limited research in the field of parent support, particularly in the past ten years, there
are a number of papers and studies that develop a variety of themes which still have relevance
today. Combining these with the findings taken directly from parents and feedback from
professionals working in the field of paediatric ABI provides a rich mix that offers a real insight into
the needs of parents and how support groups of different types can help.
5.1 Coping with Stress The added stress of parenting a child with special needs is well documented (Armstrong, K. and
Kerns, K., 2002; Law, et al., 2001) with “feelings of anxiety, depression, loss, loneliness, and
hopelessness” being regularly reported (Ainbinder, J. et al, 1998, p.100). This sense of despair was
expressed in the interviews undertaken, with Parent 4 stating that – “One year on I went to the
doctors as I couldn’t stop crying and that’s when I had the counselling”, while Parent 2 said that she
often felt depressed and needed “mothering” but this was not something that was available to her.
A parent in Graham Williams’ doctoral thesis also makes this point – “I suffered quite a bit from post-
traumatic stress after, about a year after the accident. …we had counselling… the pair of us” (2008,
p.116).
The responsibility and inescapability of being a carer for a family member is often described as
‘caregiver burden’ which may well build over time unless appropriate respite and coping
mechanisms are available. There is a clear link between prolonged exposure to this type of stress
and a deterioration in the health of the caregiver and in particular mental health (Raina, P. et al.,
2004).
In many instances it would appear that one of the most important mechanisms for alleviating stress,
the support groups that most people have around them and perhaps take for granted, such as
family, friends and other outlets, are no longer available in the same way (Kernan, J. 2009; Phillips,
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M., 1990; Law, 2001). While family and friends are likely to rally round in the first instance, parents
interviewed stated that some family and friends became less visible over time. This was partly
because the parents of the child with the ABI had to re-order their lives, were not as flexible and so
could not participate in some activities that others with healthy children would engage in. Also some
people found it difficult to cope with their child’s challenging behaviours. Parent 5’s comment about
her son’s behaviour exemplifies this – “It was really hard, his disinhibition was not good.” Philips
(1990) summarises this phenomena – “Parents of handicapped children experience social isolation as
they become embedded in the care and sorrow involved with caring for their children. They also
report adverse relationships with family and friends but at the same time find that they must rely on
the extended family for help” (p.405).
Some parents felt that it was hard for them to use these groups for support in the sense that they
did not want to constantly burden their friends and family with their issues and therefore their
usefulness in this context was diminished. Parent 1 sums this up – “My parents were worried enough
without me constantly talking about my problems”. The loss or diminution of the usefulness of such
support naturally creates a gap at a time when additional support is required and it can be further
argued that the support dynamic needs to change to meet the new needs of the parents. Of course,
there were examples of family members and friends who really did support in the fullest sense and
those relationships became stronger as a consequence.
5.2 Care Giver Wellbeing and Improved Care Giving A key finding in the research was that caregivers who were healthy and stable typically delivered
better care to their children and often had better relationships with them (Baum, L., 2004). In
Armstrong and Kerns’ ‘Assessment of Parent Needs Following Paediatric Brain Injury’ (2002) they
state – “Recent studies have shown that supporting parents following a child’s brain injury may not
only help them to cope with these difficulties, but may also enhance the success of the child’s
recovery as well. Conversely, a chaotic family environment is strongly associated with poor recovery
of behavioural and adaptive functioning in children. Family environment may have a larger impact on
recovery of function than the severity of the injury itself” (p. 149).
Ainbinder et al. (1998) advance the idea that coping with a child’s disability is linked to parents’
cognitive adaptability leading to resulting improvements in their own psychological wellbeing and
that this is linked to types of social support and to reacquiring a level of control in their lives. Singer
et al. (1999) confirms this link stating that findings from their study of 128 parents of children with a
disability or chronic health condition suggest that – “participation in Parent to Parent (programmes)
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has a significant impact on attitudes that are thought to be primary components of parental
cognitive adaptation to disability” (p.100).
Smith, K. et al. (1994) support this view in reference to Telleen et al., commenting that – “diminished
stress and feelings of isolation would enhance more positive mother-child interactions and reduce the
likelihood of rejecting behaviour by the mothers” (p.129).
This theme is also taken up by Han and Belcher (2001) who, in their study on parent support of
children with cancer, state – “How parents cope with their child’s cancer diagnosis and treatment
has been found to impact on the child’s treatment-related morbidity, quality of life, and even
treatment outcome”, (p.27).
Linking the above themes, it can certainly be postulated that the health and wellbeing of parents is
directly linked to the progress of their children and their potential outcomes in a virtuous circle and
that parent support is an important component in parental wellbeing. Figure 1, following,
demonstrates how parents who have a positive health status and outlook offer better support to
their children, whose progress in turn is improved, thus further encouraging the parents.
Figure 1 – Parent health and child virtuous circle
5.3 Reducing Isolation Parents’ sense of feeling less isolated when engaged with a support group is a dominant message
that is the result of a variety of related factors. The mere fact that the parents of a disabled child can
communicate with others who are in a similar situation when previously they felt completely alone is
in itself perceived to be extremely beneficial. Participation in support groups led parents in a study
to state that – “Just knowing that they could contact other members at any time for support helps
them feel less alone” (Law, 2001, p.40).
Figure 1 – Parent health and child progress virtuous circle
Optimistic and stable
parents
Improved care and
relationship
Improved child
outcomes
Parent Support
Fellowship
Emotional support
Advice & information
Socialisation
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Feelings of isolation may be exacerbated by the parents’ sense that having a disabled child puts
them in a unique situation and that no-one, no matter how well intentioned, or professionally
qualified in this arena, can ever really fully understand the challenges and emotions that they have
to deal with (Phillips, M., 1990). Parent 5 makes this point – “People just don’t know what it is like
living day to day.” A parent interviewed for Graham Williams’s doctoral thesis (2008) similarly states
– ‘..it is a very, very lonely place being the parents of someone with a brain injury when other people
don’t appreciate what’s going on” (p.108).
In a study of 94 parents who had children who had either a TBI, orthopaedic injury or were diabetic,
85% of those with a child with a TBI answered affirmatively to the statement – “I need to discuss
feelings about my child with someone who has gone through the same experience” (Armstrong, K.
and Kerns, K., 2002, p.153). Interestingly those who had diabetic children and those with
orthopaedic injuries recorded 67% and 29% scores respectively. This gives a clear measure of the
impact of a child’s brain injury on parents and its alienating effect ahead of many other conditions.
Parents interviewed stated that although their contact with parents who had had an ABI was limited,
the contacts that they had had were very beneficial and also in two cases, parents who had contact
with families with children with unrelated disabilities still viewed these as positive experiences.
These types of contact still offered an empathetic, non-judgemental ‘listening ear’ but generally it
was felt that the greatest benefit would be derived from contacts with parents whose children had
had an ABI.
This notion of a group which allows parents to unburden themselves of their angst and vent their
frustrations without fear of being judged, where parents are not alone in the uniqueness of the
problems that they face and that the people listening are facing similar challenges is one that is
omnipresent in both the literature (Armstrong, K. and Kerns, K., 2002; Baum, L., 2004; Ainbinder, J.
et al., 1998; Han, H. and Belcher, A., 2001; Winch, E. and Christoph, J., 1988) and in the interviewed
parents’ comments and is central to the purpose of parent support groups.
Parent 1 expresses this point of view in simple terms – “You don’t want someone to fix it, but just to
listen”. Parent 5 comments – “What we need is just talking – it’s good to talk. Talking is the thing we
need to do most.” A parent interviewed as part of Ainbinger et al’s study (1998) offers a further
insight – “There’s a compassion there and there’s still an outpouring of love instead of a label…”,
(p.103).
Much of the emotional support that is directed to parents provides a significant contrast to the
emotional energy expended by parents in caring for their children and in navigating the care and
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education systems. The focus on the parents themselves and how they are coping allows for
conversations and discussions that are open which often would not be held at home with partners
who are too close to the situation and similarly emotionally distressed (Law, M. et al., 2001).
5.4 Problem Solving and Information Sharing Support is also generated through the pooling of resources and expertise. Group problem solving
based on the unique experiences and skill set of parents is again viewed as extremely valuable
(Winch, E. and Christoph, J., 1988; Law, M. et al, 2001). Law et al. (2001), in their survey of 20
parents, state that – “Participants learned from each other, from people who are going through the
same issues or who have experienced them in the past. Analysis of the group meetings indicated that
the predominant focus of each meeting was discussing common experiences” (p.39).
Parent 1 and Parent 4 in particular expressed the idea that contact with other parents who were
either in the same situation or who were further advanced on their journeys would be extremely
helpful in signposting different options and simply offering their own experiences and coping
strategies.
5.5 Parental Self-Affirmation A final major benefit is associated with helping parents to regain positive perceptions of their own
self worth and a level of self-affirmation. The initial ‘loss of self’ is expressed by a parent in Graham
Williams doctoral thesis (2008) – “When he first had his stroke obviously we lost the David that we
had before, but I also felt like I lost myself… my personality which had been very happy, optimistic,
sort of very positive person…that went away and I just sort of felt like I was – literally I wasn’t myself
any more. And that was quite strange to come to terms with”(p.109).
Recognition of an individual’s achievements in coping in an exceptionally challenging circumstance
and also providing needed support for someone else can lead to a level of empowerment that
rebalances the sense of self worth and control. A parent’s comment in Ainbinder et al.’s ‘Qualitative
Study of Parent to Parent Support for Parents of Children with Special Needs’ (1998) demonstrates
this well – “Parent to parent made me feel like I’m an extraordinary person because I can deal with
two disabled children” (p.99). This empowerment is further enhanced when parents, often through
the support of others, begin to develop improved knowledge of the systems and services available to
them and become more confident in expressing and asserting their needs, thereby being more able
to take control of their situations.
Giving support to others was deemed to be an extremely important element of support programmes
and tapped into people’s naturally altruistic response to those in need in similar circumstances
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(Baum, L., 2004; Aibinder, J. et al., 1998). Indeed, Baum (2004) discusses “helper therapy” stating
that giving help – “can be even more beneficial than receiving help for oneself” (p.387). This was also
recognised by Parent 1– “If you can help someone else, then it makes you feel a bit better.” Parent 4
said that she would consider running a support group as it would be – “Helpful for me and helpful for
others.”
In summary, it is clear that the sense of belonging and acceptance to be found in a group of people
who have experienced similar extreme hardship can provide a significant boost to individuals giving
them emotional succour, a renewed sense of purpose and control and peer group fellowship.
6. Current Provision
Current support provision for parents of children with an acquired brain injury (ABI) is extremely
limited, both directly in the aftermath of a child’s injury and also in the longer term.
6.1 Directly after Injury Understandably the initial focus directly after a child has sustained a brain injury is very much on the
child with parents typically in ‘crisis management’ mode. Two parents interviewed stated that they
had met other parents at hospital but those contacts had not been maintained after their child had
been discharged. Parent 5 commented – “I met some parents in hospital but we needed someone to
pull us together”. Parents’ views as to whether at this early stage this was something they wanted
varied. A parent in Graham Williamson’s doctoral thesis is echoed by others in his study – “But what
would have been useful would have been if we could have spoken to other parents, and that never
was an option. It seems to me that the rights of parents to deal with these horrendous health issues
are very, very limited” (p.113). Others viewed things differently as exemplified by another parent’s
comment – “We haven’t gone in for any of that meeting other families in the same position. I think
we’ve got to get on with life” (p.113).
While parents are often not in a position to take on much information and plan ahead at this stage,
the parents interviewed and TCT staff affirm from their experiences that there is limited preparation
for parents for the challenges ahead, particularly in regard to educating them about what to expect
going forward and their own needs.
TCT’s provision of a Brain Injury Co-ordinator (BIC) at Sheffield Children’s Hospital offers an
opportunity to improve the level of support provided to parents at the earliest stages and allows for
signposting of support services that would be of use to parents into the future (from January - March
2011, 21 referrals were made to the BIC). Extending this model to other hospitals specialising in the
treatment of paediatric brain injuries could be extremely useful.
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While social workers and therapists might be available as part of the care provision funded by PCT’s
and Local Authorities on the child’s return home, providing a level of contact with the family, their
focus is again largely on the child’s rehabilitation and progress. Support for the family itself tends to
centre around the provision of respite care to allow families to carry out day to day activities, as
opposed to tending to their emotional and psychological wellbeing. The experiences of parents
interviewed in this study and by Graham Williamson were not on the whole positive and many
parents do not get access to services. A parent in Graham Williams’ thesis sums this up – “It’s a real
eye opener. Once you are in the situation you automatically think things will be put in place for your
child, to meet your child’s needs, and it’s not the case at all” (2008, p.116).
For families whose children have been admitted to TCT for rehabilitation, the level of support
available to parents is certainly improved. Given the typical length of stay at TCT of three to six
months, and the fact that the parents have moved beyond the absolute immediacy of dealing with
the aftermath of the injury, there is more time for them to meet with and share experiences with
other parents. TCT staff on site have reported that the informal peer group support is valued and
relationships are sometimes maintained after children leave TCT. A more formalised structure for
peer group support is provided through a monthly coffee morning for parents of children on the
continuing care and respite packages. A similar session for families on the rehabilitation programme
which had tailed away is being relaunched. A relatively new service that has been introduced is
provided by the Systemic Family Psychotherapist at TCT allowing parents to talk in confidence about
their concerns and issues. Other professional staff are also available to provide information on an ‘as
and when basis’ providing valuable contact and information for parents as needs arise.
6.2 Ongoing Support After extensive research only a very small number of ABI specific support groups for parents were
found. These are:
SHIPS (Supporting Head Injured Pupils in School) in Weston-super-Mare run a face to face
group for c.8 attendees on a bi-monthly basis.
Penney Weekes, a self employed occupational therapist contracted to Devon Care Trust and
Torbay Care Trust who specialises in working with children with ABIs, runs a support group
in Torbay which meets bi-monthly.
Of ten groups that had originally been part of CBIT’s parent support network, all but two had
ceased to operate. These are now operating independently of CBIT but with sporadic levels
of activity with a greater focus on occasional family gatherings.
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CBIT operates two other distinct services – ‘In Touch’ which helps families to make
telephone contact with other families with a child who has an ABI; and ‘Compass’ – which
puts parents in touch with a trained parent volunteer. It is not clear how well used these
services are.
Cerebra operates a ‘Parent-to-Parent Contact’ service which is moderately busy (c.10
matches per month) but their focus is more on cerebral palsy. There is no follow up to
ascertain how successful these contacts are or how long they endure.
Brainbox, a new charity based in the North East, operates a helpline with trained staff and is
currently setting up a meeting based parent support group in Newcastle. Their intention is to
set up others.
The TCT Brain Injury Community Team (BICT) provides a community-based service
supporting families from both a practical and emotional perspective (in 2010/11 30 children
and families were supported in this way) with family and school visits. Access to the TCT
team of professionals was regarded as extremely helpful by three parents who were
interviewed but in most instances it is only available if funding is forthcoming.
There is no dedicated online community for parents in this cohort and other brain injury focussed
organisations either focus on adults such as Headway (c.110 parent support groups) or run
‘specialist’ treatment programmes for children such as BIBIC and Brainwave.
Support for parents is potentially available from organisations that are not ABI focussed such as:
Face 2 Face (part of Scope) which operates a volunteer network of befrienders who are
parents who have disabled children and meet with parents to provide advice and emotional
support. This service is available in 30 regions.
Contact a Family directs people to appropriate organisations who can provide support, has a
network of Family Workers who provide one-to-one help to families caring for a child aged
0-19 years of age, with any kind of disability and also Volunteer Parent Representatives who
offer peer support and guidance.
There are many independent local groups that provide a variety of services for disabled
people and carers (Carers UK has a sizeable database of local organisations offering support
to carers). Parent 3 stated that when her daughter was young she travelled a significant
distance each week to attend a toddler group for children with special education needs
(SEN) and later a Riding for the Disabled group. In both instances the mother stated that she
felt that sharing experiences with other parents who had disabled children, albeit not as a
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result of an ABI, did provide a level of emotional support and fellowship that was extremely
helpful and not available elsewhere.
It can certainly be seen that provision is extremely limited and difficult to find. Contact a Family list
BIBIC, Headway, CBIT and The Children’s Trust as contacts for children with an ABI but no other
groups. Parents interviewed said that they struggled to find something that suited them. Two
parents stated that they had made contact with CBIT and Headway but that they “were not helpful”
or “did not feel right for them”.
7. Factors Influencing the Success of Support Groups A number of important observations should be noted that may impact on the development of
support groups and on their effectiveness.
7.1 Logistics, Time and Geographic Dispersion Major considerations affecting the likely success of parent support groups are those of how the day
to day lives of parents are changed by caring for a child with an ABI and their geographic dispersion.
This was a recurring theme in discussions with several organisations that currently run MBSGs.
Organisations whose MBSGs were floundering (e.g. Afasic UK, Hemihelp, CBIT) all suggested that
these were major reasons for their demise and even those charities that had a large number of
support groups such as the National Autistic Society still cited these as major obstacles for people to
attend regularly.
The challenges for parents with a child with an ABI to participate in MBSGs could be considered to
be significantly greater than for adult groups as the practicalities of organising care for a child with
high level needs limits the type of child care support that can be accessed and the unpredictability of
the child’s health and behaviours means that plans can easily be disrupted. Not only this, but the
level of exhaustion in parents created by care giving demands means that travelling to meetings in
the evening is often a major hurdle, particularly if not local. This was very much the message in the
conversations with both SHIPS and Penney Weekes who have been running MBSGs for several years.
This was equally found to be the case for parents of autistic children where there are distinct
similarities in the children’s needs and parental demands. Parent 1 reflected these issues citing the
time pressures of trying to run a business, deal with schooling issues and supporting their child who
had developed extremely challenging behaviours.
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7.2 Commonality and Comparability A recurring theme that emerged was one of commonality and comparability in regard to both the
child’s condition and age and also the parents’ characteristics such as values, outlook and parenting
style (Han, H. and Belcher, A., 20001; Ainbider et al., 1998). In parent matching programmes this was
deemed to be particularly important and a partial determinant as to the success of such an
arrangement. Ainbinder et al. (1998) reflect that – “perceived sameness is a fundamental ingredient
for success in a parent to parent match. Without a perception of sameness, there can be no full
understanding and mutual, helpful, and relevant comparisons” (p.106).
Directly related to this is the notion of “upward and downward comparisons” (Ainbinder et al.,
1998). This suggests that if parents are matched with a family whose child’s condition is more
serious than theirs, this can provide perspective to their own position and a sense of relief that their
situation is not as bad, sometimes expressed as the “count your blessings phenomena” (Winch, E.
and Christoph, J., 1988). However, they may not be inclined to ask for support or want to burden the
other parents with what they might perceive to be relatively trivial concerns when compared to that
of their parent support partners. From the perspective of the family with a more severely impaired
child, the feeling that the lesser problems experienced by their partner parents may limit their ability
to provide useful advice and also may even possibly generate feelings of resentment that the
partners’ child is less disabled or progressing faster than theirs. In the parent interviews there were
mixed views on this. Parent 3 welcomed the contact with another parent who had a disabled child
with a different level of impairment while a parent in Eileen Hammond’s research stated that they
would prefer “hopeful stories”.
It is not clear, however, whether the issue is as pronounced with other types of parent support
groups where the support focus is not just on one family. Parent 2 recognised that children and
parents will typically be at “different stages on the journey” and there may be challenges with that
but still felt that these types of contacts could still be useful and Parent 1 was not daunted at all by
the differences stating – “Everyone still has a personal need to share their story and look for
support.” Parent 5 viewed this similarly, discussing a very ill child who had subsequently died whose
parent attended the same support group and said that the parent was still in contact with her – “I
think it creates a challenge, but I don’t think it’s bad.” Other organisations such as the National
Autistic Society and Dispraxia UK, whose group members experienced similar disparities, did not feel
that this was a major issue and that it certainly did not negate the benefits of the group. A focus on
commonalities as opposed to differences creates a position of similarity which can be a strong
foundation for building a mutually beneficial relationship (Winch, E. and Christoph, J., 1988).
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The reality is that in the ABI community precise matching would be extremely hard to achieve with
both the child’s age and condition to be factored in to any matching criteria, significantly limiting
possible partners. The management of such a system would also be extremely time consuming given
the ongoing changing status of the children with some progressing faster than others. However,
non-specific parent matching is something that should be considered as an option that would
certainly benefit some parents while others might not wish to participate.
7.3 Atmosphere and Ethos Important to the success of MSBGs, as confirmed by groups contacted in the study, is the
atmosphere and ethos of the group. Several group leaders expressed the view that attendees should
not feel that they have to contribute in meetings and that sessions should be open and non-
judgemental. Furthermore, it was also considered important that there was an open door policy
where everyone was welcomed and that parents did not feel obliged to attend every meeting and
no questions were asked if they have been absent.
The tone of online support groups is also important but harder to manufacture given that the
contributors ultimately create the atmosphere of the forum. The online forums viewed followed
similar patterns with regard to welcoming new contributors and providing supportive responses with
some being slightly more light hearted than others. The founder of a popular site for people with
autism and their families, ASD Friendly (www.asdfriendly.org), confirmed from their first hand
experience that it was very important to develop clear rules of engagement for members and strict
moderation of user comments from the inception of the forum (see Appendix E for example of rules
from Asperger and ASD UK).
7.4 The Role of Central Support It was noticeable that there was a seeming correlation between the sustainability and success of
both MBSGs and contact groups and the level of central support that they were provided.
Organisations such as CBIT, whose support groups have ceased to operate, Afasic England and
Hemihelp who both reported that maintaining their groups both in regard to numbers and activity
levels, was extremely challenging, provided minimal central support. Speaking to the support groups
themselves it is clear that they were left to their own devices and felt isolated. Inevitably, the
goodwill and enthusiasm of volunteers will wane if it is perceived that there is little interest in them
and no support from the central organisation.
Organisations whose support groups were more successful provided dedicated resources to manage
and support these satellite operations. This might be expected from some of the larger charities
such as the National Autistic Society and the MS Society who have extremely large networks (110
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and 350 respectively) and considerably greater financial resources. It is harder for smaller charities
to justify the expenditure required. However, an excellent example of a smaller charity that operates
a network of c.40 MSBGs and contact groups is Ataxia UK which has a dedicated Support Group Co-
ordinator. The proactivity of this individual was a major factor in the success of the groups with
regular communication and sharing of information between group leaders, a feature. The Dyspraxia
Foundation has also recently recruited two Development Officers who have been employed to
increase the number of support groups. In both organisations guidelines for set up and management
of groups is provided that not only assists the volunteer manager but outlines the expectations of
the organisation (see Appendix F for an example). The NAS is currently introducing standards
retrospectively so that there is a consistency of delivery ensuring that basic minimum levels are
achieved. To this end they provide templated risk assessments and operational guidelines as well as
conducting operational and financial audits.
8. Effectiveness of Different Parent Support Options This section provides an overview of each parent support option with an assessment of their ability
to deliver against the criteria of ‘fellowship & socialisation’, ‘emotional support’ and ‘advice &
information’. While certain of these formats may be extremely effective in theory, the limitations of
logistics, time and geographical disbursement may render them ineffective. This is recognised where
appropriate.
8.1 Meeting Based Support Groups MBSGs are those groups that would most often be associated with the support group classification,
led by a volunteer with often a small committee. In larger charities these may be either affiliated
groups which do not have any legal status but simply act as a forum for people to meet or branches
which are part of the charity itself, carrying the charity number and having their own bank account,
sometimes their own website and their own staff. Charities often have both forms operating
together.
Characteristics
Frequency: Meeting monthly but very often bi-monthly
Format: Open discussion and often a guest speaker
Attendance: Anything from ‘2 – 20 depending on the guest speaker’
Activities:
Support, information, education, lobbying, fundraising, fellowship (depending
on commitment and size of the group)
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Exemplars*:
*MBSGs are headline
estimates as it has
not been possible to
precisely identify the
meeting frequency
and activities
undertaken for each
group
Afasic England - 14 groups with declining levels of activity
ASBAH - 27 groups offering differing levels of support
Ataxia UK - 40 groups
Different Strokes - 44 groups
Dyspraxia Foundation - 20 groups
Headway - 110 groups
Hemihelp - 34 groups
NAS - 100+ groups
MS Society - 350+ groups
Pros: - Offers opportunity for open discussion, empathy and sharing experiences
- Frequency of meetings promotes building of relationships
- Local community relevance
- Recognition in the community as the ‘place to go’
Cons: - Considerable coordination and admin required to achieve success
- Success also founded on goodwill and energy levels of volunteers
- Costs associated with admin / room hire (possible free options)
- ‘Chaotic’ parent lives (of child with ABI) make it hard to attend consistently
- Central support / management and audit requirements
- Travel distances, carer needs and time in evenings often a barrier
Effectiveness:
Fellowship & socialisation – High*
Emotional support – High*
Advice & Information – High*
*The ratings only pertain if the groups are well attended and sustained over the longer term
which is a major concern for the MBSG format for parents in the ABI cohort
Anecdotal testimony from existing parent support groups suggest that more mothers than fathers
make use of MBSGs. Without specific research one can only surmise as to why this might be
although this was a topic that arose in a number of conversations with people who actually ran
groups. The reasons that were postulated were:
- Mothers typically took on the care provider role and therefore sought the company of
others in the same situation.
- Men often found it harder to express their emotions and therefore avoided situations where
they might be required to do so.
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- Men were more often more comfortable getting involved with the practical aspects of
managing care and kept themselves busy in that way and did not allow themselves to
acknowledge their own emotional needs.
8.2 Contact Groups Contact groups would be best described as databases of local people held by a volunteer acting as a
facilitator providing information to the group and passing on questions from others for the group to
answer. The Contact Group Leader also acts as a signpost directing general enquiries to the main
organisation or other links. Some groups hold occasional meetings and the more proactive will
arrange family events. More often than not this individual will be managing the group on their own.
Characteristics
Frequency: Meetings held occasionally and sometimes family events
Format: Proactive management of member database
Attendance: Family events often well attended
Activities:
Dissemination of information from central organisation, distribution of local
information, source of parent to parent interface
Exemplars:
often previously
obsolete MBSGs
Afasic England
Dyspraxia Foundation
Hemihelp
Pros: - Less onerous to manage and likelihood that is would be easier to recruit
volunteer leaders
- Provides local information* and relevance to parents
- Provides opportunity for parents to make local connections
- Family type events include siblings and children with an ABI to be included as
well as parents
- Travel challenges not an issue
- Admin / management costs negligible
*Local but may still comprise a significant region
Cons: - Success founded on goodwill and energy levels of volunteers (albeit at
reduced level than MBSGs)
- Service to parents more information led, rather than provision of emotional
support
- Level of central support required
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Effectiveness:
Fellowship & socialisation – Moderate*
Emotional support – Moderate*
Advice & Information – High
*This may increase over time as groups gets established and family events are run, parent to
parent contact grows and meetings become more prevalent
8.3 Parent to Parent Partnering Parents are offered an opportunity to be partnered with other parents who have a child with a
disability or health condition. The children’s conditions are often not matched and the support may
often therefore be more of an emotional and fellowship nature rather than providing advice based
on experience. Communication may be telephone based or face to face.
Characteristics
Frequency: Level of contact down to the individuals participating
Format: One to one contact
Attendance: Either telephone or face to face
Activities: One to one support, likely to be more emotionally than practically led
Exemplars:
CBIT (In Touch service)
Cerebra
Contact a Family
Pros: - Personal relationships may form that provide high levels of personal support
- Format flexible to suit both parties
- Limited support required centrally
Cons: - ‘Mismatching’ may lead to failure of relationship
- Effective matching challenging and complex as parent/child needs and status
are constantly changing
- Central contact is typically lost – difficult to determine success rates
Effectiveness:
Fellowship & socialisation – High*
Emotional support – High*
Advice & Information – Moderate
*Possibly dependent on the matching and affinity of parents - parental experiences will vary
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8.4 Parent Befriending Parent Befriending is conducted by trained volunteer parents who have typically got children with a
disability or health condition. The level of service provided varies from organisation to organisation
from the provision of emotional support and general advice, to representing parents and helping
them to access services.
Characteristics
Frequency: Varying level of contact – dependent on needs of parent
Format: One to one contact
Attendance: Either telephone or face to face
Activities: One to one support, guidance and advice
Exemplars:
CBIT (Compass service)
NAS
Contact a Family
Pros: - Trained parents able to provide tailored support
- Specificity of matching less important
- Particularly useful for parents with newly diagnosed / impaired children to
be matched with ‘experienced’ parents
Cons: - Training and ongoing CPD onerous
- Support mechanisms required for parent supports to ensure their wellbeing
- Difficult to recruit high volumes with likelihood that the service could
become over subscribed (as with NAS)
Effectiveness:
Fellowship & socialisation – Moderate*
Emotional support – High*
Advice & Information – High*
* Limiting factors related to provision of sufficient trained befrienders
8.5 Online Forums The number of support group online forums has seen a considerable rise in recent years with the
growth of social networking sites such as Facebook, MySpace and Bebo creating a level of familiarity
with this medium6. Online forums of this type offer the opportunity for people to seek advice, offer
sympathy and information, vent frustrations and as a medium for general informal communication.
6 43% of UK internet users posted to social network sites in 2010 (Office for National Statistics)
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Online forums can either be set up using dedicated software or piggy backing on social networking
sites such as Facebook. Typically the ‘piggy backing’ method does not allow the level of
personalisation and functionality that can be achieved through a bespoke forum and the type of
conversation is often more akin to a more relaxed social networking style.
The anonymity of these communities (members normally have a pseudonym) and the circumvention
of normal social protocols (i.e. not having to listen to others and wait your turn to speak) mean that
there is a direct and ‘to the point’ discourse that elicits impassioned requests for help and heartfelt
responses (Baum, 2004). The ways in which sites are set up varies but the best sites are clearly
demarcated into topic areas (see Appendix G for examples). It is important to exercise a level of
control over the forum with a level of moderation required. Moderators are often volunteers. While
most online communities are open to be viewed by anyone, people wishing to participate have to
enrol and provide a level of personal detail (e.g. name, post code, contact number, email etc.). This
allows for users access to be revoked if there is abuse of the forum (users have to agree to abide by
the rules for forum engagement) and also to create a database for future use (e.g. parent partnering,
newsletter distribution etc.).
Characteristics
Frequency: Levels of posting vary with some sites extremely active
Format: Online activity only
Attendance: Available 24/7; possibility of specific ‘meet the expert’ sessions, blogs
Activities: Specific advice requests, general communication / chat, fellowship
Exemplars:
ASD Friendly / Aspergers and ASD UK online forum
Ataxia UK / Hemihelp
Brain and Spine Foundation
Carers UK
Contact a Family
Macmillan Cancer Support / MS Society
Pros: - No geographical restrictions
- Accessible 24/7
- Inexpensive to run
- Anonymity of users leads to open requests and responses
- Access to large body of people means that experience / information matches
are likely
23 | P a g e
Cons: - Only 73% of UK families have access to the internet.7 Within this group there
are geographical and socio-economic disparities8
- Levels of support could be deemed to be relatively superficial
- Some individuals, while having online access will not be comfortable with
communicating in this way
Effectiveness:
Fellowship & socialisation – Moderate
Emotional support – Moderate/High*
Advice & Information – High
*Interestingly high levels of improved emotions have been recorded from participation in online
forums. Baum (2004) reports that from a study of 114 primary care givers of children with special
needs, 87% respondents felt “more hopeful” and that 83% “more relieved” as a result of using an
online forum. Han and Belcher (2001) report similar benefits and state that 77% of participants in a
study of 73 parents of children with cancer who used online forums cited giving and receiving
information had been extremely beneficial.
9. Assessment of the Options and Recommendations Assessment of the varying parent support options is based on:
i) Usefulness to parents
ii) Resource and cost implications
iii) Long term sustainability
iv) Practicalities of set up
v) Benefit to TCT
Table 1 following applies these measures to the different support options allowing for direct
comparisons to be made.
7 Only 43% of internet users are active in social networking. Office for National Statistics (2010)
8 Office for National Statistics (2010) – 85% family access in London vs 59% in North East. Anecdotal
information suggests that children from lower socio-economic groups have more instances of TBI.
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Table 1 – Parent Support Group Assessment Matrix
Usefulness to Parents Resource / Cost Implications
Sustainability Set Up Practicalities Benefit to TCT
Meeting Based Support Group
Valuable for those who can attend but limited widespread effectiveness due to travel / logistical / time barriers
Support cost of 1 FTE support group co-ordinator (c.£30,000 p.a.) / group admin costs (c.£1,000 – £4,000 p.a.) depending on group
Likelihood of high levels of attrition with groups over time and diminishing effectiveness of the groups themselves
Finding both volunteer leaders and recruiting parents to the groups may be challenging
Offers opportunity to extend TCT profile but poor publicity if high group attrition. Supports community and corporate fundraising efforts
Contact Group Offers access for parents to others without MBSG barriers. Opportunity to support parents with local /regional issues and offers wider family contact
Support cost of 0.7 FTE (c.£21,000 p.a.) / group admin costs (c.£150 p.a.)
More sustainable model due to lesser work load for volunteer leader and less likelihood of gradual decline in interest
Finding volunteer leaders will be less challenging than for MBSGs. Similarly recruiting parents to the group may be easier given less commitment required
Builds TCT profile and charity awareness through local databases. Supports community and corporate fundraising efforts
Parent Matching Matching may have limited usefulness if matches are not comparable but there are likely to be a body of parents who would embrace this opportunity
Dependent on sophistication of matching. Could be systematised but difficult to keep up to date. Basic matching service would carry minimal cost
Matching service itself sustainable but difficult to quantify success and sustainability of each match (possible to elicit occasional feedback to monitor progress)
Basic systematised set up would be simple to develop. More sophisticated delivery would require regular updating of records and monitoring
An additional service for TCT to profile in fund raising activities
Parent Befriending Befriending would provide high value support for certain parent types (e.g. those whose children are in early stages of ABI recovery)
Significant management time required to recruit, train and monitor befriending team
Service likely to be well used but possibly unsustainable in respect of meeting demand
Training of ‘befrienders’ would require significant up front resource and time
Positive service for TCT to profile but may be negatively perceived if resources can only cope with limited delivery
Online Forum For those comfortable with communicating online, offers excellent 24/7 access to a broad community of parents, many of whom will have similar experiences
Set up costs c.£19k and ongoing hosting/support costs c.£2,300 p.a. Moderators required (volunteers). Active management requires 0.3 FTE (c.£9k p.a.)
Self sustaining if there are high levels of activity in the forum. However, this should not be taken for granted and ongoing promotion is required i.e. ‘ask the expert’ / blogs
Set up time from concept brief to launch c.13 weeks. Specialist organisation to be contracted to design and implement
High value profiling service for TCT (particularly if linked to education materials). Supports community and corporate fundraising efforts
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9.1 Recommendations From Table 1 it can be deduced that the most sustainable means of providing tangible support
across a widely dispersed parent cohort is via an online forum and contact groups. These services
complement one another and support parents in different ways. While neither would provide the
close knit community and contact that is the feature of MBSGs in the shorter term, it is quite
possible that with appropriate direction and support, contact groups can evolve to fulfil this
function. The critical tests of sustainability and coverage, while at the same time providing a highly
valuable service to parents, mean that an online forum and contact group combination would
provide a strong platform from which other support services might evolve.
9.2 Online Forum The provision of an online forum offers a cost effective and tangible means of supporting parents UK
wide eliminating the logistical barriers that are very real for this parent community. The question of
sustainability of the online forum in regard to the maintenance of high activity levels with a
community of up to 60,000+ (assuming users would be maintained beyond their child’s 16th
birthday) should be posed. While it is difficult to compare organisations in respect of the needs and
numbers of their service users, organisations such as Different Strokes and the Brain & Spine
Foundation and Hemihelp run successful online forums despite the fact that they are not particularly
proactively managed. The development of an engaging and easily navigable system is the key to
success for an ABI forum, together with ensuring that its profile is maintained in the ABI community
at large. Important features would be:
Specific category areas to ensure that topics of interest are easily identified and entered
into (examples might be: education – early years / changing schools; challenging behaviour;
adolescence).
Ongoing expert blog providing expert advice on a range of topics.
Occasional online ‘meet the expert’ sessions and ‘live chat events’ which would offer
parents the opportunity to pose specific questions answered in real time (see Figure 2
following for an example).
Forum registration for all users and moderation to ensure appropriate controls are
available.
Links from and to the educational information currently being produced by Ian Ray.
Signposting from the education and information service will increase traffic to the online
forum and provide a comprehensive service that will further embed the credentials of TCT
as being the lead provider in this sector. Figure 2 following demonstrates how educational
26 | P a g e
materials can be combined with the Forum possibly as monthly ‘Did you know…?’ trailers or
to profile a new release of information.
Figure 2 – Taken from ASD Friendly online forum (www.asdfriendly.org)
If numbers of contributors are lower than hoped, it would be possible to establish links with other
organisations internationally such as Brain Injury Australia and the Brain Injury Association USA
where again distances make travelling to MBSGs a challenge. Ataxia UK operates an online forum
which is used but does not generate daily postings (there are only c.15,000 people in the UK with
Ataxia) and the organisation also provides a link to a US based forum which has many daily
international contributors.
Close management of the forum is important with a moderator retrospectively checking entries to
ensure that nothing malicious is posted, that advice is not harmful and that there is no overt selling
of services. Moderators/administrators can also offer advice or signposting in appropriate situations.
Clear rules of engagement would be issued and accepted as part of the registration process (see
Appendix E for a copy of rules from an online forum). Contributors falling short of the standards
required would be warned and then deregistered.
To co-ordinate, promote and maintain the standard of the online forum, it would be necessary to
provide a level of resource that is estimated to be 0.3 FTE. The responsibilities for this role are
captured in the job description shown in Appendix H.
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9.2.1 Set Up and Operational Costs
The set up costs for the online forum are as follows:
Third party design / set up* Excl. VAT £18,915
*See Appendix I for a breakdown – it should be recognised that at this stage this is an estimate
based on assumptions of the functionality required.
Ongoing annual operational costs would be:
Hosting costs * + Support costs £2,300
0.3 FTE for Parent Support Coordinator £9,000
Total Annual Costs Excl. VAT £11,300
*Estimate based on doubling of current cost which is charged at £50 per 10,000 site visits (currently c.30,000 visits pcm)
It is possible that set up costs and possibly a contribution to operating costs could be covered
through corporate sponsorship.
9.3 Contact Groups for Parents of a Child with an ABI A national network of contact groups would provide an opportunity for parents to access other
parents in a region and seek local information and knowledge. Clearly some regions would be less
well served than others in this regard but given the less onerous nature of running a contact group,
it may be possible to establish a comprehensive network that offers considerable coverage. Unlike
many of the current contact groups which have evolved from MBSGs as they have fragmented and
therefore understandably have a level of inertia, the intention would be to develop a considerably
more dynamic and proactive format that could potentially evolve its reach and methods over time.
The primary responsibilities of the Contact Group Leader would be to:
Establish and manage an up to date database of parents for the region;
Cascade information from TCT as required;
Provide regional information to the group;
Facilitate the raising of individual’s queries concerning local matters to the group and re-
circulate responses;
Arrange two family events each year to include siblings and the child with the ABI (it is
envisaged that support from others in the group would be forthcoming to help facilitate
this). It is likely that parent to parent links would evolve from these types of gatherings as
parents are able to identify other families whose situations and outlooks are similar;
Facilitate parent to parent partnering as required. Parents would be offered the opportunity
to be provided with contact details of other parents who lived in the region who similarly
28 | P a g e
wanted support. It is not envisaged that detailed matching could be performed although it is
likely that individual’s co-ordinating this would develop a sense of which matches might be
most appropriate.
It is anticipated that groups may in time develop beyond these functions to become, in part, a MBSG
but this will be dependent on the clustering of parents in any given region and the enthusiasm of the
leader and other members of the group. Indeed, it is quite possible that an active contact group
might have a number of small group meetings of 3-4 parents running on an informal basis once
introductions have been effected. While this might not be the objective of the contact group from
the outset it could be strongly encouraged.
For long term success, it is important that support is provided at both set up stages and then on an
ongoing basis. A central coordinator role would provide a central contact for all Contact Group
Leaders, collect information from groups for impact reporting, collate ideas and achievements from
the groups9 and re-circulate these across all regions, provide documentation to assist with the
management of events and activities (e.g. risk assessments, guidelines) and arrange an annual Group
Leader meeting. It is anticipated that this role would equate to 0.7 FTE resource (with possibly more
resource required over time as numbers of groups develop). The responsibilities for this role are
captured in the job description shown in Appendix H.
The level of coverage will ultimately be determined by the number of volunteers willing to take on
responsibility for leading a group, however the intent should be to set up upwards of 40 groups
nationally. Areas where hospitals specialising in paediatric neurological services are located should
be targeted as a priority which will assist in the development of links and awareness. See Appendix J
for a list of hospitals.
9.3.1 Set Up and Operational Costs
The cost of setting up parent groups would be relatively small and in most organisations there is no
central financial support which is something that was perceived negatively by volunteers managing
services and having to fund raise to cover basic operating costs. It would be recommended that a
contribution should be made to volunteer Contact Group Leaders for cost of incidentals such as
stationery and stamps (NAS provide £150) and then either an annual contribution to cover the cost
of telephone calls or a mobile phone itself (NAS provide a mobile phone). It may well be possible to
persuade a mobile phone provider to supply ‘pay as you go’ phones with TCT providing an annual
payment of £100 to cover calls.
9 This information would be invaluable for TCT research into parents’ needs and behaviours
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Many local authorities, under the Aiming High for Disabled Children Government initiative launched
in 2007, provide access to grants of up to £10,000 for set up of such initiatives. Surrey County
Council has dispensed a number of grants for such purposes and has set up a parent forum to assist
with the development of local services for disabled children in the borough.
Direct set up costing could be calculated as follows:
Parent Support Co-ordinator (4 days over year) £500
Marketing materials (leaflets / posters) £200
Stationery / expenses £150
Mobile phone (£100 for calls if phone provided free) £100
Total Costs Excl. VAT £950
Ongoing annual contact group costs*:
Parent Support Co-ordinator (0.7 FTE) £21,000
Contact Group Leader Annual Meeting £3,000
Stationery / expenses (assumes 40 Groups @ £50) £2,000
Mobile phone (£100 for calls if phone provided free) £4,000
Total Costs Excl. VAT £30,000
*While it is not essential that TCT funds family events, this could be a focus for community fundraising.
9.4 Parent Support Coordinator As described, in order to both facilitate the set up, ongoing support, promotion and evolution of
parent support services, it is crucial to have a dedicated resource. The combination of both support
for the online forum (0.3 FTE) and contact groups (0.7 FTE) would create a single full time post
responsible for parent support in these areas.
The role itself would require a self motivated individual who was able to work independently and
also as part of a team. It is anticipated that the cost of an individual with sufficient maturity and
experience to work across both areas would be c.£28k - £32k10 per annum (fully costed) with travel
expenses of £1,200 p.a. See Appendix H for a full job description.
Line management within TCT is to be determined but key internal relationships would be with:
Community team including BICT
10
Based on a range of mid-tier positions reviewed and assumes a salary of c.£24k - £28k and includes NI, pension and training allowance
30 | P a g e
Marketing and communications department (both for promotion of the services and links to
education and information services)
Online forum provider
HR support
10. Parent Support Development and Planning The development of parent support services will require coordination and collaboration between a
number of different stakeholders at TCT. The management of the project and the project team could
be undertaken either by a senior TCT staff member or an external project management resource.
The phasing of the project should be such that there is alignment with the release of the information
and education service and that TCT resources are not capacity constrained to take on additional
workload. Launching the online forum in advance of the contact groups would ensure clear focus
and allow for the online forum to become the engine for communication through which future
initiatives could be tested and promoted. Indeed, the forum would be an excellent means of
recruiting both Contact Group Leaders and members.
Once both the online forum and contact groups have been firmly established, other peripheral
services such as the befriending programme could be considered, using both the online forum and
contact groups as a means of assessing need and the likelihood of success.
Figure 3 following shows headline activities in the recruitment of the Parent Support Coordinator
and set up of the online forum.
Figure 3 – Project overview for Parent Support Coordinator recruitment and online forum set up (see
Appendix K for full scale project overview)
Weeks 1 2 3 4 5 6 7 8 9 10 11 12 13 14 15 16 17 18 19 20 21 22 23 24 25
Recruitment Process (adv./interview /appoint/CRB) 6
Parent Support Coordinator Start 8
Online Forum (OF) Brief /expressions of Interest 4
OF RFP formulation/Issue/Presentations/Shortlist 8
OF supplier appointment 1
OF provider specification development 6
System build/beta testing/ UAT testing 7
OF launch 1
Marketing plan development 6
Marketing plan - materials/execution Note 1 12
Contact Groups - development of engagment strategy 6
Contact Groups - development of admin/guidelines 6
Education materials - development / system build
Steering group project meetings
Note 1 - If possible the launch should be in tandem with the launch of the education materials as a seamless new education and information service provision
31 | P a g e
Key elements of the plan to be considered are:
1) Timing of recruitment – as shown in the project overview, the timing of the appointment of
the Parent Support Coordinator means that the selection of the online forum provider would
not allow for participation in the selection process of the provider and in the development of
the specification. However, the appointment would allow for involvement throughout the
build stage of the system and, importantly, support of the marketing effort through to the
launch.
2) Recruitment and service provider procurement timelines are realistic but relatively
challenging. Workload and other projects in HR, IT and procurement should be factored in to
the plan.
3) The development of the education materials and the system to dispense them should be
included in the overall project plan if the two services are to be launched seamlessly. This is
shown indicatively in the project overview.
4) The launch date for contact groups is not shown in the start up overview. This would be
determined to some degree by the traffic coming through to the online forum. However, if
Contact Group Leaders are found through other contacts, then the foundations for setting
up groups could be laid in advance of a launch of this service. The early development of
appropriate administration tools and guidelines would facilitate this approach and is
included in the plan.
11. Profile and Awareness Building
For TCT’s parent support services to grow to a size that will ultimately make them self sustaining
(with a level of central support) and genuinely useful to parents, considerable focus must be placed
on creating a high profile for TCT in the medical community, supportive organisations and through a
variety of media.
11.1 Direct Parent Search – Search Engine Optimisation Currently a google search on the term “acquired brain injury” places TCT at 23rd in the rankings with
organisations such as Headway, CBIT, QEF and BIRT ahead and the term “acquired brain injuries”
relegates TCT to 28th position. The term “children’s brain injuries” advances TCT’s position to 4th. For
a search on “acquired brain injury parent support” TCT places 23rd with Brainbox, BIRT, CBIT, Parent
Partnership Service (Shropshire & Telford) and Headway ahead. Optimisation of search engines
should be considered to enhance rankings for all relevant searches. A number of interviewed
parents both directly in this study and by Eileen Hammond stated that they used online resources
extensively to find out about ABI.
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In promoting TCT in this way consideration should also be given to how parent support is accessed
from TCT’s main website. It may be preferable to have a clear separation on the website between
internal TCT services and community services which clearly highlights the parent support services
(educational, online forum, contact groups). See Appendix G for an example of Macmillan Cancer
Support’s homepage which clearly signposts their online community.
11.2 Building Awareness with Intermediaries Key intermediaries who would be in a position to pass on information and signpost TCT services are:
Hospitals – Building awareness ‘upstream’ with the 21 hospitals in the UK specialising in
paediatric neurological care (see Appendix J for hospital list) should be a central element of
the marketing plan. From the direct interviews with parents and the groups currently
supporting parents with a child with an ABI, it would appear that there is a paucity of
information provided at hospitals. Building strong relationships with these hospitals
immediately establishes a link to TCT supporting parents in the short term through potential
referrals to TCT and in the longer term through the provision of ongoing support. It is highly
likely that hospitals will endorse TCT ahead of other organisations given TCT’s medical (ABI)
credentials. Combining this with high quality, clinically substantiated
educational/informational materials carrying links to the support services would offer an
extremely compelling ‘parent support package’ to be able to provide to parents.
GP’s – Accessing GP’s will be a greater challenge considering the numbers in the UK
(c.110,000) and the difficulty of access. GP’s are overloaded with new information. GP
mailing lists can be purchased and direct mailing undertaken. However, the impact of this
might be limited unless it is tied in to a major campaign. Ian Ray suggests the possibility of
orchestrating a campaign to highlight that an ABI should be an ongoing flag on a GP’s
patient record and this might be a hook that could be used, potentially gaining the support
of the Royal College of General Practitioners and the GMC. General information that is
displayed and used within GP practices is selected from an approved list provided by each of
the UK’s 152 PCTs health promotion departments. Links through to these departments
should be sought and maintained as public health transfers across to local authorities.
Supportive Charities – Organisations such as Brainbox, Headway, Carers UK, BIRT, Brain &
Spine Foundation, Contact a Family, Different Strokes and Kids would again be strong
advocates for the services that TCT would be providing and would direct parents
accordingly.
Special Education Needs Coordinators (SENCO) – It is a statutory obligation for each school
to have a SENCO. SENCOs will often have contact with parents of children with an ABI and
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would be a good point of referral to TCT. It is not anticipated that they would be in a
position to make judgements about parents’ personal wellbeing, but TCT’s educational
materials would certainly be an appropriate tool for them and would carry information
about parent support. SENCOs could be reached through Nasen’s publications11 which have
a wide distribution amongst SENCOs.
Local Authority Educational Psychologists – typically clusters of schools will have access to
an educational psychologist who will in many instances be contacted to support children
with ABIs in the school environment. The Association of Education Psychologists is the
governing body for this group and produces newsletters and other publications for its
members which would be an effective communication media for TCT’s ABI services.
Local Authority Parent Forums – as part of the Aiming High for Disabled Children initiative
launched by the Government in 2007, Parent Forums populated by parents representing
children’s disability groups have been set up to represent the interests of parents and their
disabled children. Contact with these groups would offer opportunity to develop
relationships, access to possible funding and signposting.
11.3 General Awareness Building As the service grows, participating parents and Contact Group Leaders would become natural
advocates. However, every opportunity should be undertaken to further develop the profile of TCT’s
range of services using TCT conferences and seminars for professionals to regularly highligh TCT’s
programmes, as well as ensuring that where possible TCT speakers presenting at other conferences
do the same.
To deliver an effective profile building campaign and to maintain high levels of awareness will
require considerable focus and some investment from TCT. As such, to ensure success, the external
engagement plan for parent support should form part of TCT’s ongoing marketing and
communications strategy.
11.4 Marketing and Launch Costs
It is difficult to assess precisely the level of marketing costs without further refinement of the
strategy. Buying a database to mailshot 50,000 GP’s and executing the mailshot would be expensive.
However, more focussed direct marketing contacting the key intermediaries would be considerably
less costly. In order to develop materials that will allow for extensive distribution to hospitals, local
authorities and PCTs, and to optimise search engine effectiveness would cost in the region of
11
Nasen (formerly the National Association for Special Educational Needs) publishes the British Journal of Special Education, Support for Learning, the on-line publication Journal of Research in Special Educational Needs and the magazine Special
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£10,000 - £15,000 depending on the scale of the launch. Ongoing costs would be considerably
reduced but ongoing refreshment of the profile would be important.
12. The Benefits to TCT The benefits to parents of parent support services are widely discussed in this report and are
incontrovertible. The benefits to TCT are also significant. Delivering services with a footprint across
the UK builds on the current external community based programmes at Sheffield Children’s Hospital
and that provided by the Brain Injury Community Team. Developing a comprehensive external
parent engagement programme and a real national presence will set TCT apart from any other
organisations in the sector with a number of potential benefits accruing, namely:
1) Increased referrals to TCT for on site rehabilitation services.
2) Increased fundraising capability, linking community fundraising with local contact groups.
3) Improved leverage for corporate funding bids moving the perception of TCT as being a
Surrey based service to a national provider and with significantly more parents directly
engaged with and benefiting from the Trust’s activities.
The diagram in Figure 3 below demonstrates how, with relatively low level investment, TCT’s
position in the sector would change, moving to a unique leadership position in regard to both
community engagement and clinical expertise. It is highly likely that this could not be challenged
given the expense of developing similar levels of clinical expertise for other providers.
Low Clinical
Expertise
High Clinical
Expertise
Low Community Activity / Profile
High Community Activity / Profile
CBIT
TCT New
Cerebra
Brainwave
BIBIC
TCT Current
Figure 3 – ‘Before and after’ positioning map
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13. Summary The provision of parent support services both fits with TCT’s strategy to increase its external
footprint and most importantly its ultimate mission – “To provide the care, treatment, rehabilitation
and education of children and other persons with physical disabilities, learning disabilities and
complex medical needs…. providing support at home for children and families.” Supporting the
parents themselves puts parents at the centre of their children’s care and ultimately delivers better
outcomes for them.
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