Tom has always suffered with
constipation and often is in pain for up to 24 hours before
a bowel movement this seems to have stopped and Tom is
now going to the toilet every other day, rather than once or
twice a week.
This
parent attributed the remarkable improvement in her son's
health to attending the Touch Therapy Training Programme (TTTP).
This is an eight-week programme where parents are taught the
basics of massaging their children with disabilities/health
problems by qualified massage therapists.
I
joined the programme when I became a volunteer massage
therapist in January 2000. This research and development
project is based at The Psychosocial Research Centre:
Chronic Conditions and Disability, Coventry University and
was developed by Julie Barlow (Professor of Health
Psychology) and Lesley Cullen (Research Psychologist). The
national programme had been running for two years when I
became involved, and, although it began initially in
Coventry, it has now spread nationally with qualified
therapists in Blackpool, Lincoln, Essex, and Chester taking
part.
The
primary objective of the programme was to develop a training
package designed to equip parents of children with health
concerns and/or disabilities with the necessary skills to
gently massage their children. The aims of the programme are
to enhance parents perceived ability to cope with caring for
their child with disabilities by providing them with
practical skills and to strengthen the bond between parent
and child.
Indulging
in back massage
What Happens on the Touch Therapy
Training Programme?
The programme consists of eight
one-hour sessions delivered over a period of eight weeks.
Parents are taught basic massage movements by a qualified
massage therapist. Each parent/child dyad attends every week
and is expected to practice at home in the intervening days.
Parents are given an accompanying training pack, which
contains an instructive weekly guide to the massage
movements, an illustrative photograph booklet and a bottle
of sweet almond oil. Therapists tailor the instruction to
meet the needs of each parent/child dyad.
Touch
Touch
(i.e. physical contact)
is reputed to be essential to human growth and development.1
Touch can take many forms, but one therapy that incorporates
the benefits of touch is massage. The therapeutic benefits
of massage have been well documented. Massage is applied to
the soft tissues of the body and has a beneficial effect on
the nervous and circulatory systems. The physical benefits
are improved circulation of blood and lymph, reduction in
muscle tension and pain relief. The psychological benefits
include a decrease in mental tension, a feeling of
well-being and stress relief.
Other Studies
Massage with children with
disabilities has been well documented by Tiffany Field in
her studies of massage with children with juvenile
rheumatoid arthritis (JRA).2
In this study, children with mild to moderate JRA were
massaged by their parents for 15 minutes a day for 30 days.
A control group engaged in relaxation therapy. The
children's anxiety and stress hormone
(cortisol)
levels were immediately decreased following the massage.
Pain was assessed by self-reports, parent reports and their
doctor's assessment of pain
(both the incidence and severity)
and pain-limiting activities. Over the 30-day period, pain
had decreased on all these measures.
Another
study of massage with children with cerebral palsy has been
documented. Katharine Stewart looked at the physiological
effects of massage on children with quadriplegic cerebral
palsy (QCP).
She noted an increase in circulation in paralyzed limbs,
with a change in color and temperature From being cool and
pale to having a healthy-looking, warm, pink glow after the
massage.3 She noted that this
may help in reducing pressure necrosis, which can occur when
the tissue is starved of nutrients and oxygen.
My Experiences of the TTTP
As a newly qualified therapist,
I wanted the experience of massage with children with
disabilities. I was very interested in becoming involved
with the TTTP because, although I had no doubts about the
physical and emotional benefits of massage, this was
something different. Instead of simply treating the child,
the parent was taught the skill of massage to use with the
child, so for the therapist the treatment was secondary to
the teaching.
Before
I could become a therapist on the programme I had to go
through the TTTP induction. During this, I was introduced to
the concept of touch therapy, shown how to keep
appropriate records and informed what to expect from other
therapists who had previous experience of the programme.
The
programme at this time was being held in a clinic at The
Tiny Tim Centre in Coventry. This venue was chosen by the
University because of its excellent clinic venue and
children's play area.
I
can recall that first chilly winter's morning when I waited,
in anticipation, for my first parent/child dyad to arrive.
Another therapist involved on the programme and I had
prepared the therapy room with clean towels, training packs
and welcoming cuddly toys. When the children arrived, I
found it quite nerve wracking. I did not know quite what to
expect from the parent or child or how they would react to
being massaged.
When
they arrived and I began with the consultation and getting
to know each other, it was evident that the parent was as
keen as I was to begin learning the massage. My first child
had a diagnosis of cerebral palsy, and after moving her onto
the couch and lying supine (face up) she looked on whilst I
demonstrated the massage movement of effleurage on her left
leg, then encouraged her mother to copy my movements on her
right leg. We were away!
What Happens on the TTTP?
After their initial
consultation, I instructed each parent for eight weeks in
the basic massage movements of: effluerage
(a gentle stroking and soothing
movement which is used initially to say hello to the body,
although it can be stimulating if used vigorously);
petrissage (a kneading and squeezing movement); and friction
(deeper, small circular
movements against the bone, with the intention of releasing
specific areas of tension and blockage).4
Parents
could follow the techniques in the instruction booklet,
which described each technique and showed where, on the
body, it was appropriate to use it, e.g. the frictioning of
joints, but not up the spinal column.
Techniques
were slowly built upon each week, going at a pace suitable
for the parent and child. I also discussed contraindications
to massage with the parents and kept detailed weekly records
of my observations. The parents were asked to keep home
record sheets to note down any changes in their child's
health or behavior each week.
Instructing
Mum in foot massage
Children's Disabilities/Health
Problems
I worked as a touch therapy
therapist for six months and with a number of parent/child
dyads. The children ranged in age from 18 months to 11
years. Their problems spanned a wide range of physical and
learning difficulties and included: arthrogryposis, asthma,
autism, cerebral palsy, chromosomal disorder (with
associated problems), coeliac disease, constipation,
diabetes, Down's syndrome, dyspraxia, dyslexia, hychondroplasia (dwarfism),
immune system compromises, prematurity with low birth
weight, rheumatoid arthritis, sight problems, Silver Russell
growth disorder and sleep problems.
Parents
were taught how to massage different parts of their child
with reference to any specific problems they had. For
example, for constipation I demonstrated abdominal massage,
and for asthma, gentle movements on the chest. Joint pains
received massage attention and, if appropriate, parents were
shown gentle stretches.
Each parent
was instructed in basic massage movement
Case Study 1
Steven, an 18-month child and
his mother began the TTTP in October 2000. He presented with
mosaic trisome chromosome disorder. His resulting problems
were: poor sight, sleep apnoea, oxygen dependency
(nightly and some days),
congested chest, delayed gross and fine motor skills,
irratic bowel, underdeveloped left side and generally
delayed development.
His
mother's aims of attending the programme
(as well as to learn massage)
were to build up general well-being, improve circulation and
improve use of his hands. From the first session it was
apparent that I could help with some of his problems and
(as well as teaching massage to
all areas of the body) I focused
particularly on his abdominal region
(to reduce constipation),
chest area (to reduce
congestion) and hands
(to try and develop more sensitivity).
Steven's
mother attended every session, growing in confidence in her
ability to massage her son, and she practiced touch therapy
twice weekly before bedtime. Steven's increased development
was apparent to me as the weeks progressed. I saw him take
his first few steps unaided and clap his hands. Changes
perceived by his mother over the eight weeks included:
improved bowel functioning, increased duration of sleep,
reduction in use of oxygen mask at night, enhanced
flexibility and co-ordination in hands, alleviation in
congested chest and increased awareness and sensitivity of
his body.
His
mother stated, I never knew or expected things to go as well
as they have; the programme has surpassed all my thoughts on
what it might do and it has given me knowledge to be used
weekly or when the need arises.
In my role
as 'teacher' it was important to work at the parent's pace
and give clear and positive feedback about their progress
Case Study 2
Alice, a 2-year-old child and
her grandmother attended the programme. Alice had a rare
form of asthma that meant she had excessive mucus
production, resulting in vomiting most nights. She also
complained about achy legs, and had a slight build and
general poor health, particularly frequent chest infections
and constipation. She had been a premature baby and weighed
only 1lb at birth.
Her
grandmother's aims in attending the TTTP were to improve her
granddaughter's health and for her grandchild to enjoy it.
I
had to focus on building up a good relationship with Alice
as she was unco-operative at first and very clingy to her
grandmother. As the weeks progressed she discovered that she
enjoyed massage and loved covering herself from head to toe
in oil! Her pleasure in the massage increased with her
grandmother's confidence. Her grandmother massaged her 3-4
times per week either before her evening bath with oil or
after her bath with talc.
Her
grandmother reported many changes, including improved bowel
functioning, weight gain, better all-round health, improved
sleeping patterns and reduced vomiting at night.
In addition to these perceived physical benefits, her
grandmother reported that Alice requested massage on her
achy legs, was more tactile and actually appeared to have a
reduced fear of hospitals and doctors.
Touch and Children with Autism
It was very interesting working
with children with autism, who stereotypically do not like
touch. In these cases it was essential for me to be flexible
in my approach, recognizing the importance of using the same
couch and routine every week. To my surprise some of these
children began not only to tolerate, but also appeared to
enjoy this specific type of touch.
One
parent with a child with autism said, Towards the end of the
programme he has shown signs of spontaneously seeking to
touch or even hug people!
Teaching rather than Treating
Up until my involvement in the
programme, I had treated adults for sports injuries, bad
backs, stress-related muscle tension and relaxation. Working
on the programme not only differed because of the age of my
patient, but because I was teaching rather than treating. It
was all about giving parents a skill that they could use to
help their child, rather than just having their child
treated by someone else.
I
had expected all the parents to be as enthusiastic as I was,
but I had not realized how difficult and uneasy some parents
were in copying my moves or how unsure they seemed with what
I classed to be simple movements. I was surprised at how
some of them seemed a bit intimidated by the therapist's
knowledge and, conversely, how some picked up the massage
very easily and progressed much faster than others. In my
role as their teacher, it was important to be as reassuring
as possible, to work at their pace and to give clear and
positive feedback about their progress. I enjoyed meeting
and teaching mothers, fathers, grandparents and foster
parents from a wide variety of backgrounds and cultures.
Massaging Children
Working with children
was also a very different patient experience. Reactions to
the massage from children varied as much as children do!
Before beginning any massage, it was important to check out
with the child that it was OK to begin and get their
consent, either verbally or, if their disability presented
communication difficulties, with a positive sign.
When
the massage began, some children needed constant attention,
whilst others were just happy to lie peacefully on the couch
with a dreamy look in their eye. With the former, I was
surprised at how many other skills I had to put into
practice rather than just teaching massage I had to
persuade, cajole, show that teddy bears like massage too and
even play take it in turns to have a hand massage when one
child insisted it was Mummy's turn, Katie's turn, then
Jamie's turn! Some days it felt like I spent more time
playing with toys and singing than massaging!
Massage Positioning
In terms of positioning the
children for massage, some could not or did not want to lie
in the usual prone or supine massage position, but could lie
on their side or on their parent's knee. If the couch were a
complete no-no we put a mat on the floor and worked from
there. Some children needed certain areas of the body
supported, so extra towels and pillows were used. I learnt
that placing toys on the floor under the couch's face hole
was a good way of getting to massage children's backs. It
goes without saying that I had to look after my own back
too, whatever position I massaged the child in.
Supporting Parents
As a newly qualified
therapist myself, I was still getting used to the
semi-counseling role that one has to play as a therapist. In
this clinic environment, parents would frequently off-load
their concerns and worries about their child. It was obvious
that some of them felt a huge strain in not only having to
care for their child with a disability, but also coping with
running the rest of their family. Parents often had concerns
about their own health and how it was difficult to cope with
a perceived lack of understanding by health professionals
and insufficient information5 regarding their child's
disability.
It
became apparent to me, during the course of the programme,
that there was a lack of support for parents of children
with disabilities. The TTTP meets the need for support if
only for a few weeks. As a qualified therapist I had been
advised on how to maintain a professional and detached
relationship with patients, although this was sometimes
difficult in this very sensitive area. However, as a TTTP
trained therapist I had the support I needed and could
debrief after a session.
I enjoyed
meeting and teaching mothers, fathers, grandparents and
foster parents from a wide variety of backgrounds and
cultures
One parent said at the end of
the programme, I actually really miss going up there every
Saturday it was quite nice to be able to have someone to
talk to every week about things that were happening.
Supporting parents appeared to be of equal importance to the
learning of a massage skill.
Personal
Rewards from being a TTTP Therapist
The personal rewards I received
as a therapist were tremendous. It was wonderful to see the
children becoming more relaxed and confident in the clinic
environment week by week. I will especially remember one
little girl with a compromised immune system and asthma. She
had been very reluctant to remove any of her clothes, let
alone receive any massage, at the beginning of the programme,
but by the last session ran into the clinic shouting, Katie
massage!, undressed herself and lay down on the couch ready
for her massage.
It
was wonderful to see children's faces begin to relax as the
parent and I massaged them. Even faces affected by muscle
spasms softened. For me, probably the most challenging
aspect of being involved with the programme has been trying
to work out my own role within the parent/child
relationship. Within this environment I needed the
co-operation of both of them, and, as a child-free adult
myself, it was all very new and interesting!
Health
Benefits for Children
The research aspects of the
programme have explained the benefits of touch therapy for
parents and how parents perceive changes in their children's
condition: