Background to research
Within the UK, a child is diagnosed with a severe disability every 25 minutes (Roper, cited in
Contact a Family, 2010). Children add a different dimension and new stresses upon all
families and when a child has a neurological condition, the pressures on all (particularly
parents) can be greatly magnified. This research investigated how counselling might
address self-esteem issues of parents with children with a neurological condition and
explored resultant improvement in self-esteem levels of their child[ren].
As long ago as 1993, Baumeister identified self-esteem as the most researched concept
within social psychology (Baumeister, 1993) and this observation holds true today. Self-
esteem is an important component of psychological health and children with neurological
conditions (and their parents) can find healthy self-esteem difficult to achieve and maintain.
Findings in a recent study advocate early support of emotional resilience such as self-
esteem as a means of addressing emotional and behavioural problems in persons with
DOI 10.1108/20420911211207044 VOL. 3 NO. 1 2012, pp. 27-36, Q Emerald Group Publishing Limited, ISSN 2042-0919 j SOCIAL CARE AND NEURODISABILITY j PAGE 27
intellectual disability (Taggart et al., 2010), however, whilst a mass of literature and journal
articles focus on various aspects of self-esteem, research linking and exploring self-esteem
and neurological conditions is more limited.
Self-esteem forms from the judgement and feedback of others (Cast and Burke, 2002) and
often relates to opinions and beliefs we hold of ourselves and how we value ourselves as
people. Developing a sense of self, including feelings of self-worth and self-esteem, is one of
the crucial processes of a child’s early years and as children attain this sense of self, they
develop feelings of self-esteem/self-worth and begin the process towards self-acceptance
(Mruk, 1999).
However, a lack of self-acceptance can cause and maintain emotional problems and children
with neurological conditions can experience many additional emotional difficulties, with
concerns commonly resulting from: identity issues; communication problems; difficulties
in forming friendships; lack of confidence; inability to develop social skills/learning;
immobility; hiding behind ‘‘masks’’; ‘‘labelling’’ and appearance/body image. As one
caregiver explained, ‘‘[. . .] this inability to communicate means that he has not had a friend
since he was in nursery, he so lacks confidence, yet appears overly confident, brash even,
hides his uncertainty by being in your face [. . .].’’
Furthermore, Drummond (2009) draws attention to how the media can damage self-esteem
within a developing child, citing how media images make it hard enough for a teenager with
no neurological condition to relate to their self-image and noting that it can be far more
difficult for children with neurological conditions to live up to the unrealistic standards of
perfection that the media suggests must be achieved in order to be accepted by society.
Issues such as inclusion and integration also impact on the self-esteem of these children
with comments such as ‘‘I’m treated differently’’ common. Physical and mental development
are areas where again such children often feel ‘‘apart from the crowd’’ and this also impacts
upon self-esteem and can cause confusion between ‘‘disability’’ and ‘‘identity’’ (Gibson,
cited in Mind, 2004).
Chronic pain and/or illness, often part of life for children with neurological conditions, can
sometimes lead to low self-esteem and self-esteem development can also suffer when
normal childhood processes are interrupted, by, for example, discontinuous parenting
created through long or repeated periods in hospital (separation anxiety, Bowlby, 1979),
an unavoidable situation which can be more prevalent within families with a child with a
neurological condition.
Educationally, confusion can occur between a child who is underachieving, i.e. they are not
reaching their full potential, as opposed to a student with a neurological condition who may
be achieving to the best of their ability. Students considered as ‘‘underachievers’’ are
observed as often lacking: feelings of self-control; mastery of their body and behaviour;
a sense of competence and age appropriateness (Goleman, 1996) – all of which are often
also contraindications of neurological conditions and all of which predispose low self-
esteem.
Bullying also leads to a lack of self-acceptance, loss of confidence and low self-esteem and
whilst anyone can be a victim of bullying, some, through no fault of their own, are more likely
to be bullied than others. Children can often be bullied for being different, for example,
because of a disability, with eight out of ten children with learning difficulties disclosing that
they have been bullied (Mencap, 2006). Unfortunately, people with a disability are often seen
as some of the most vulnerable within our society and can, therefore, be an easy target for
bullies. This type of experience can lead to the onset and continuance of negative self-image
which can persist throughout life; a legacy of society’s failure to supply appropriate support
and a safe environment.
Parallel to self-esteem development within the child with a neurological condition, caregivers
also face self-esteem concerns and as discussed by Tomasello et al. (2010) special needs
(for example a neurological condition) not only impose lasting imprints upon a child’s
development, they can also have a psychosocial impact on the child’s family; not only do
j j
PAGE 28 SOCIAL CARE AND NEURODISABILITY VOL. 3 NO. 1 2012
intellectual disability (Taggart et al., 2010), however, whilst a mass of literature and journal
articles focus on various aspects of self-esteem, research linking and exploring self-esteem
and neurological conditions is more limited.
Self-esteem forms from the judgement and feedback of others (Cast and Burke, 2002) and
often relates to opinions and beliefs we hold of ourselves and how we value ourselves as
people. Developing a sense of self, including feelings of self-worth and self-esteem, is one of
the crucial processes of a child’s early years and as children attain this sense of self, they
develop feelings of self-esteem/self-worth and begin the process towards self-acceptance
(Mruk, 1999).
However, a lack of self-acceptance can cause and maintain emotional problems and children
with neurological conditions can experience many additional emotional difficulties, with
concerns commonly resulting from: identity issues; communication problems; difficulties
in forming friendships; lack of confidence; inability to develop social skills/learning;
immobility; hiding behind ‘‘masks’’; ‘‘labelling’’ and appearance/body image. As one
caregiver explained, ‘‘[. . .] this inability to communicate means that he has not had a friend
since he was in nursery, he so lacks confidence, yet appears overly confident, brash even,
hides his uncertainty by being in your face [. . .].’’
Furthermore, Drummond (2009) draws attention to how the media can damage self-esteem
within a developing child, citing how media images make it hard enough for a teenager with
no neurological condition to relate to their self-image and noting that it can be far more
difficult for children with neurological conditions to live up to the unrealistic standards of
perfection that the media suggests must be achieved in order to be accepted by society.
Issues such as inclusion and integration also impact on the self-esteem of these children
with comments such as ‘‘I’m treated differently’’ common. Physical and mental development
are areas where again such children often feel ‘‘apart from the crowd’’ and this also impacts
upon self-esteem and can cause confusion between ‘‘disability’’ and ‘‘identity’’ (Gibson,
cited in Mind, 2004).
Chronic pain and/or illness, often part of life for children with neurological conditions, can
sometimes lead to low self-esteem and self-esteem development can also suffer when
normal childhood processes are interrupted, by, for example, discontinuous parenting
created through long or repeated periods in hospital (separation anxiety, Bowlby, 1979),
an unavoidable situation which can be more prevalent within families with a child with a
neurological condition.
Educationally, confusion can occur between a child who is underachieving, i.e. they are not
reaching their full potential, as opposed to a student with a neurological condition who may
be achieving to the best of their ability. Students considered as ‘‘underachievers’’ are
observed as often lacking: feelings of self-control; mastery of their body and behaviour;
a sense of competence and age appropriateness (Goleman, 1996) – all of which are often
also contraindications of neurological conditions and all of which predispose low self-
esteem.
Bullying also leads to a lack of self-acceptance, loss of confidence and low self-esteem and
whilst anyone can be a victim of bullying, some, through no fault of their own, are more likely
to be bullied than others. Children can often be bullied for being different, for example,
because of a disability, with eight out of ten children with learning difficulties disclosing that
they have been bullied (Mencap, 2006). Unfortunately, people with a disability are often seen
as some of the most vulnerable within our society and can, therefore, be an easy target for
bullies. This type of experience can lead to the onset and continuance of negative self-image
which can persist throughout life; a legacy of society’s failure to supply appropriate support
and a safe environment.
Parallel to self-esteem development within the child with a neurological condition, caregivers
also face self-esteem concerns and as discussed by Tomasello et al. (2010) special needs
(for example a neurological condition) not only impose lasting imprints upon a child’s
development, they can also have a psychosocial impact on the child’s family; not only do
j j
PAGE 28 SOCIAL CARE AND NEURODISABILITY VOL. 3 NO. 1 2012
children with disabilities have special needs, the families of these children also have unique
needs. This is exampled within the current research by family members and caregivers who
described the stigma they have experienced. The way that one parent described this was
‘‘I have seen criminals treated better; we felt more and more humiliated [. . .]’’ This concept
was noted by Sheppard (2003) who suggested that people can feel ashamed that they are
part of an undervalued sector of society and thus ‘‘the notion that the stigmatised group is
inferior is perpetuated’’ (Hodges, 2003, p. 138).
Research into counselling is important on many different levels, not least because it can
enable counsellors to improve their practice, makes counselling more visible for both clients
and the general public and can identify strengths and weaknesses of particular models when
used to address specific presenting issues. Counselling research also identifies stigma,
availability or absence of counselling for any particular group of society. Factors associated
with seeking psychological help have, therefore, been much researched, with resultant
data aiding development of relevant psychological services for various populations
(ÆGisdottir and Gerstein, 2009).
Findings
Caregivers’ perceptions and experiences formulated subordinate themes which clustered
into four super-ordinate themes, as shown in Figure 1.
j j
VOL. 3 NO. 1 2012 SOCIAL CARE AND NEURODISABILITY PAGE 29
Figure 1 Super-ordinate themes of caregiver perceptions and experiences
SUPER-ORDINATE
THEMES
Living with neurological conditions. Parents considered the impact upon them of living with
neurological conditions and whilst highlighting issues which impact upon their self-esteem,
listing their main concerns and reflecting upon areas where counselling had been, or could
be, helpful, parents presented a picture of life with neurological conditions.
It was evident that stress emanating from neurological conditions clearly predates diagnosis
in those parents who know that there is a problem, either congenital or acquired, but do not
know exactly what this is, or what this means. Around the time of diagnosis, parents can go
through a range of emotions and waiting for an actual diagnosis (in some cases a diagnosis
can take years) is seen as a particularly stressful period. Furthermore, at the time of
diagnosis it was recognised that relational issues (which were seen by all as a principal area
of concern) often deteriorated. Following diagnosis, some parents felt a sense of relief as
they saw the diagnosis as providing a reason for behavioural problems, whilst others found
that difficulty in adapting to diverse situations and accepting change were injurious to
self-esteem.
Issues of time management, communication problems, socialising and isolation were also
identified as particularly damaging to self-esteem and caregivers felt that matters over which
they had little choice and/or control were also areas where self-esteem suffered.
Interestingly, however, communication and relationships with professionals were seen by
some parents as enhancing their self-esteem as they fought for the best outcome for their
child, whilst others reported that interchanges with professionals had lowered their
self-esteem. This could be related to the way in which some parents were viewed by
professionals as having experiential expertise. These parents were consequently
empowered through the process of acting in partnership with professionals in determining
the best course of action for their child’s welfare. Paradoxically, however, other parents felt
that they were excluded from the process and felt disempowered and out of control;
self-esteem seemed to rise alongside a feeling of control and diminish in conjunction with
lack of involvement with their child’s treatment. The quest to obtain information was also seen
as particularly frustrating, disempowering and detrimental to self-esteem.
All these issues were recognised as areas which had been, or could be, successfully
addressed through the medium of counselling.
Fluctuating self-esteem. The self-esteem issues of a developing child are well documented
within literature (Phelan, 1996; Branden, 1994; Briggs, 1970) and include issues about how a
child sees themself and their developing self-identity and self-worth, their level of
acceptance within their peer group, body image and frequently changing surroundings and
feelings. This cohort of parents had now identified circumstances which they felt impacted
upon their own self-esteem and focussed on ways to improve life for themselves, which
would also impact upon their child[ren] and their family.
Both parent and child were recognised as concurrently facing self-esteem challenges and a
cyclical element was established in that a caregiver’s self-esteem impacts upon a child’s
self-esteem, which, in turn, impinges upon the self-esteem of the family unit and has an
impact upon family life. A cycle which can, if not broken in some way, be replicated infinitely.
j j
PAGE 30 SOCIAL CARE AND NEURODISABILITY VOL. 3 NO. 1 2012
Furthermore, an overwhelming 91 per cent of parents reported correlation between their own
self-esteem and that of their child, i.e. raised self-esteem within the parent resulted in a
consequential rise in the self-esteem of the child and vice versa. Thus, ‘‘feelings and actions
of family members influence and are influenced by the feelings and actions of others’’
(Freedman and Combs, 1996, p. 6).
These findings confirm the importance of early relationships between child and parent
advocated by Bowlby’s (1973, 1979) Attachment Theory and concur with Gerhardt, who
maintains that ‘‘one person’s behaviour affects how another person behaves and his/her
behaviour then affects the original person in a circular process’’ (Gerhardt, 2004, p. 9).
Interested readers may find further information about how relationships between parents
and their child may shape the child’s future within Gerhardt’s (2004) book, Why Love Matters.
More recent research also found mother-child synchrony when analysing electronic diaries
of both mother and child (Whalen et al., 2011), which suggests that the relationship between
a primary carer and a child is of paramount importance.
j j
VOL. 3 NO. 1 2012 SOCIAL CARE AND NEURODISABILITY PAGE 31
with incidences of staring, aggression, avoidance and condescending attitudes of some
members of society reported. Over 45 years ago, research into stigma supported how
disability affects self-image, suggesting that society’s aggression towards a person can be
internalised, thus lowering self-esteem (Goffman, 1963) and it seems that little has changed,
since the current research and other recent research also addresses how the general public
can fail to recognize that problematic behaviour may result from a neurological condition
(McClure, 2011).
The past and the future. Themes 1 and 2 describe day-to-day self-esteem issues of living
with neurological conditions as portrayed by parents. However, experiences from our past
and expectations and fears for our future also impact upon present day living, our coping
mechanisms and our self-esteem.
Parents, therefore, addressed the impact of neurological conditions and self-esteem upon
their temporal existence. It is clear that much cognitive and affective work takes place
in coming to terms with neurological conditions. For example, accepting the existence of
disability, working through accompanying loss, dependency/child not being able to live
autonomously, becoming a ‘‘carer’’.
Parents also described how realisation that things had not evolved as they had anticipated
when they had looked forward to the present day was sometimes experienced as a loss. For
some, this loss was comparable to a grief reaction, with similar process stages.
Within the merging of past and present, there was also a tendency to attribute culpability,
unsubstantiated self-blame or even guilt which can adversely impact upon the self-esteem
of the parent (and resultantly the child) and induce a questioning of self and faith (religion) as
part of the search for meaning.
In addition to looking to the past for answers to present day situations, parents were also
concerned about the future, particularly about how their child might cope without them. This
manifested itself as concerns both for the immediate future, if the child becomes more
independent and in the longer term when parents are no longer able to help. The fear of
death (either having to comfort the child worrying about leaving parents, or parents worrying
about what will happen to the child following their own death) is part of living with
neurological conditions. Furthermore, anticipatory grief and the changing nature of hope
when faced with life-threatening illness, as addressed by McAbe (2011) and Rando (2000),
can occur if the child has a degenerative illness.
Coping strategies. Parents described strategies other than counselling they found useful,
including:
B Having fun. Enjoying being with the child, playing games, laughing and doing things
together, living as normal a life as is possible.
B Telephone help-lines. A telephone number to call in an emergency or just to hear a friendly
voice helped to alleviate feelings of having to cope alone.
B Support groups. The inter-relational and social aspects of support groups were
highlighted as providing huge amounts of support, as well as providing a means of talking
with people who had experienced similar situations.
B Looking beyond the symptoms of neurological disorders to the person. The ability to
separate the ‘‘person’’ from the ‘‘disability’’ was seen as paramount. For example, always
being aware of the ‘‘person’’, thus preventing the ‘‘disability’’ from being in the forefront
and hiding the ‘‘character’’ led to better relationships and higher self-esteem. Over
30 years ago, Sontag (1978) warned about the use of ‘‘illness as a metaphor’’ and the
importance of symbolism and language is still raised by participants in the current study.
For example, simply using the term ‘‘person with disability’’ rather than ‘‘disabled person’’
has the immediate impact of putting the person first; issues they may be experiencing are
then secondary to the ‘‘self’’.
B A positive attitude. Looking for positives within situations which arise was identified as a
coping strategy.
j j
PAGE 32 SOCIAL CARE AND NEURODISABILITY VOL. 3 NO. 1 2012
B Self-help books. Reading relevant information helped tremendously. As one participant
described, ‘‘I felt disempowered, but information is power, I found out more from self help
books than from professionals; the more I know, the more my self esteem grows and I can
talk about and explain my son’s condition with confidence’’.
B A pragmatic view of the world/approach to life. The ability to take one day at a time and
live in the ‘‘here and now’’ helped by lessening the tendency to look to the past for reasons
and allaying fear of the future.
B Strong support systems. Support from family members, friends and/or professionals
helped caregivers cope with both day-to-day concerns and emotional and psychological
issues.
B Yoga. Relaxation and yoga helped with lack of sleep and depleted energy levels.
Those parents who had not experienced counselling (41 per cent) cited non-participation as
mainly attributed to stigma, counselling not being offered or accessibility issues. Parents
particularly regret counselling not being available at the point of diagnosis, with 7 per cent of
those currently waiting for counselling having been on a waiting list for over three months.
Those parents who had engaged in counselling (59 per cent) related the decision to seek
counselling to a single precipitating event, with 87 per cent of these parents identifying
relational problems as their presenting issue. A search for meaning and seeking acceptance
and normalisation were among other reasons for commencing counselling.
Parents were, however, unable to describe the mode of counselling, they had experienced
and there was a lack of clarity about the aims and functions of counselling, a perception that
counselling is about ‘‘giving advice’’ and/or the notion that counselling is only ‘‘for people
who cannot cope’’. Notwithstanding this, all the problems parents describe constitute
common presenting issues within counselling (i.e. control/choices, relational issues,
attachment, social issues/isolation, blame/guilt, self-esteem, regret about the past/concern
for the future) and all counselling models have established ways of dealing with such issues.
Discussion
The ‘‘self’’ is reflexive by nature and human beings try to make meaning of life events.
Caregivers used this reflexivity and meaning-making ability to explore their perceptions of
neurological conditions, self-esteem and counselling.
In making sense of their experiences, participants defined and described how living with
neurological conditions affects their life, the impact of neurological conditions upon
self-esteem and illustrated the best and worst of counselling as they experienced it.
Through this process, it became apparent that differences and similarities within and
between participants’ experiences were actually illustrating: how it is to live with neurological
conditions and how self-esteem fluctuates and impacts upon others (the present), their
feelings about the past/their concerns for the future and strategies which they have found
helpful and unhelpful in addressing the issues they face.
Caregivers search for acceptance within a world of societal issues of stigma and exclusion.
It can be seen from the super-ordinate themes that as part of the process of normalisation,
there is a tendency to dwell on the past, which could result in denial and could also lead to
another identified theme, a reluctance to plan or look forward to the future. Similar
circumstances are discussed by Mantell (2007) who addressed issues of normalisation,
finding that in the early days of caring, relatives often seek to normalise their situation. This
helped them cope at the time, but could lead to denial and reduce their ability to look
towards the future. One way in which counselling could help is to offer acknowledgement,
acceptance and validation of the caregivers’ experiencing – things which can be missing in
everyday life – whilst also working with defence mechanisms such as denial and helping
parents to address the future.
j j
VOL. 3 NO. 1 2012 SOCIAL CARE AND NEURODISABILITY PAGE 33
Conclusion
Relationships were established between the self-esteem of children with neurological
conditions and their parents and it seems that it is the meaning-making process and the
meaning that caregivers’ attribute to their situation which makes a difference to familial
self-esteem levels and determines the way in which parents cope with situations and
circumstances. The meaning attributed to neurological conditions by society is a
complicating factor in this meaning-making process and increased awareness of these
associations would benefit all involved with neurological conditions and counselling. Raising
awareness of these issues within the general public would also help create healthy
self-esteem within this cohort and interestingly, the recent World Report on Disability
(World Health Organization, 2011) seemingly acknowledges this point in highlighting the
need for increased public awareness and understanding.
It was also ascertained that good counselling of parents can be one way in which healthy
self-esteem can be achieved and maintained within children with neurological conditions.
Furthermore, from the perceptions of counselling offered by parents, it was deduced that an
integrative style of counselling (Lapworth and Sills, 2010; Egan, 2002; Palmer and Woolfe,
2000) would be most beneficial in addressing the problems parents identified. However,
as evidence also reveals stigma surrounding the process and a lack of understanding about
the aims, purpose/process of counselling, more explicit, yet easily understandable
information about counselling needs to be readily available.
Nonetheless, reducing stigma and making counselling more user-friendly and transparent
would be useless unless issues of availability and accessibility are also addressed. It is also,
therefore, recommended that ways in which counselling could be made more obtainable
and accessible for this client group (e.g. telephone and/or on-line counselling, home visits,
group counselling) should be explored.
The current research confirms the importance of work undertaken by Shakespeare et al.
(2000) who, over ten years ago, noted the value of the lived experience of parents
(and children) in researching disability; parents have identified issues of concern and
suggested ways of addressing them.
References
ÆGisdottir, S. and Gerstein, L. (2009), ‘‘Beliefs about psychological services (BAPS): development and
psychometric properties’’, Counselling Psychology Quarterly, Vol. 22 No. 2, pp. 197-219, Education
Research Complete, EBSCOhost (18 May-2 June 2011).
Baumeister, R.F. (1993), Self Esteem: The Study of Self Regard, Plenum Press, New York, NY.
Bowlby, J. (1973), Attachment and Loss: Vol. 2. Separation: Anxiety and Anger, Penguin Books,
Harmondsworth.
Bowlby, J. (1979), The Making and Breaking of Affectional Bonds, Tavistock, London.
Branden, N. (1994), The Six Pillars of Self Esteem, Bantam Books, New York, NY.
Briggs, D.C. (1970), Your Child’s Self-esteem: The Key to His Life, Doubleday & Company,
Garden City, NY.
Cast, A.D. and Burke, P.A. (2002), ‘‘Theory of self-esteem’’, Social Forces, Vol. 80 No. 3, pp. 1041-68.
Contact a Family (2010), ‘‘A guide for dealing with bullying for parents of disabled children’’, Contact a
Family Advice Sheet, February, available at: www.cafamily.org.uk/pdfs/bullying.pdf (accessed
9 August 2010).
Drummond, M. (2009), ‘‘Self image and self esteem: disability can have a major impact on your child’s
self-perception’’, Article by Megan Drummond, 30 June, available at: http://disabilities.suite101.com/
article. cfm/self _ image_self_esteem (accessed 9 March 2010).
Egan, G. (2002), The Skilled Helper, 7th ed., Brooks/Cole, Pacific Grove, CA.
Freedman, J. and Combs, G. (1996), Narrative Therapy: The Social Construction of Preferred Realities,
W.W. Norton, London.
j j
PAGE 34 SOCIAL CARE AND NEURODISABILITY VOL. 3 NO. 1 2012
Gerhardt, S. (2004), Why Love Matters: How Affection Shapes a Baby’s Brain, Routledge, London.
Goffman, E. (1963), Stigma: Notes on the Management of Spoiled Identity, Prentice-Hall, London.
Goleman, D. (1996), Emotional Intelligence: Why It Can Matter More Than IQ, Bloomsbury Publishing,
London.
Hodges, S. (2003), Counselling Adults with Learning Difficulties, Palgrave Macmillan, Basingstoke.
Lapworth, P. and Sills, C. (2010), Integration in Counselling and Therapy, 2nd ed., Sage, London.
McAbe, M. (2011), ‘‘The changing nature of hope: development, psychotherapy, and life-threatening
illness’’, Professional Psychology: Research and Practice, Vol. 42 No. 3, pp. 229-35.
McClure, J. (2011), ‘‘The role of causal attributions in public misconceptions about brain injury’’,
Rehabilitation Psychology, Vol. 56 No. 2, pp. 85-93, PsycARTICLES, EBSCOhost (accessed
3 June 2011).
Mantell, A. (2007), ‘‘Listening to carers and service users’’, in Scragg, T. and Knott, C. (Eds), Reflective
Practice in Social Work, Learning Matters, Exeter.
Mencap (2006), ‘‘‘Don’t stick it, stop it’ campaign to stop bullying’’, Information on Bullying and Children
with a Learning Disability, August, available at: www.mencaporg.uk/case.asp?id¼ 377&menuId¼318&-
pageno (accessed 14 April 2006).
Mind (2004), ‘‘Understanding learning difficulties’’, Excerpt from Booklet by Justine Gibson, Mind,
available at: www.mind.org.uk/Information/Booklets/Understanding/Understandingþ learning þ
disabilities.htm (accessed 25 April 2008).
Mruk, C. (1999), Self Esteem: Research, Theory and Practice, Springer, New York, NY.
Palmer, S. and Woolfe, R. (2000), Integrative and Eclectic Counselling and Psychotherapy, Sage,
London.
Phelan, T.W. (1996), Self Esteem Revolutions in Children, Child Management, Glen Ellyn, IL.
Rando, T. (Ed.) (2000), Clinical Dimensions of Anticipatory Mourning: Theory and Practice in Working
with the Dying, Their Loved Ones, and Their Caregivers, Research Press, Champaign, IL.
Rogers, C.R. (1980), A Way of Being, Houghton Miffin, New York, NY.
Shakespeare, T., Barnes, C., Cunningham-Burley, S., Davies, J., Priestly, M. and Watson, N. (2000),
‘‘The lives of disabled children’’, ESRC 5-16, Research Programme, Research Briefing, available at:
www.esrc.as.uk (accessed 18 July 2011).
Sheppard, N. (2003), ‘‘Friendship and group dynamics’’, in Hodges, S. (Ed.), Counselling Adults with
Learning Difficulties, Palgrave Macmillan, Basingstoke.
Smith, J., Flowers, P. and Larkin, M. (2009), ‘‘Interpretative phenomenological analysis’’, Theory, Method
and Research, Sage, London.
Sontag, S. (1978), Illness as a Metaphor, Farrar Straus and Giroux, New York, NY.
Taggart, L., Taylor, D. and McCrum-Gardner, E. (2010), ‘‘Individual, life events, family and
socio-economic factors associated with young people with intellectual disability – with and without
behavioural/emotional problems’’, Journal of Intellectual Disabilities, Vol. 14 No. 4, p. 267.
Tomasello, N., Manning, A. and Dulmus, C. (2010), ‘‘Family-centered early intervention for infants and
toddlers with disabilities’’, Journal of Family Social Work, Vol. 13 No. 2, pp. 163-72.
Whalen, C.K., Odgers, C.L., Reed, P.L. and Henker, B. (2011), ‘‘Dissecting daily distress in mothers of
children with ADHD: an electronic diary study’’, Journal of Family Psychology, Vol. 25 No. 3, pp. 402-11.
World Health Organization (2011), World Report on Disability, available at: www.who.int (accessed
July 2011).
Further reading
Contact a Family (2010), Contact a Family Newsletter [Lewisham], Winter, 2010, available at:
www.cafamily.org.uk/pdfs/Lewishamwinter.pdf (accessed 29 July 2011).
j j
VOL. 3 NO. 1 2012 SOCIAL CARE AND NEURODISABILITY PAGE 35
Gibson, J. (2006), ‘‘Understanding learning difficulties’’, Excerpt from booklet by Justine Gibson, Mind,
2004, available at: www.mind.org.uk/Information/Booklets/Understanding/Understandingþlearningþ
disabilities. htm (accessed 25 April 2008) (cited in MIND, 2004).
Roper, P. (n.d.), Contact a Family Newsletter [Lewisham], Winter, 2010, available at: www.cafamily.org.
uk/pdfs/Lewishamwinter.pdf (accessed 29 July 2011) (cited in Contact a Family).
Corresponding author
Ann Edworthy can be contacted at: ann.edworthy@smu.ac.uk
j j
PAGE 36 SOCIAL CARE AND NEURODISABILITY VOL. 3 NO. 1 2012