AEPC PSYCHOSOCIAL CARE FROM
FETUS TO ADULT WORKING GROUP
BIANNUAL MEETING
23-25 MARCH 2011
LAKE BALATON, HUNGARY
ABSTRACTS
COPING STRATEGIES OF PARENTS WITH CHILDREN WITH
SEVERE CONGENITAL HEART DISEASE– FIRST DATA
“The art of the heart”: Art therapy for hospitalised congenital
heart disease patients
E. Quadri, E. Callus, M. Bedoni, S. Bonfanti, G. Campioni, M.
Carminati, A. Giamberti, M. Chessa
Markova M.I, Angelova D. I., Kaneva-Nencheva A.I., Tzonzarova
M.R.
Department of pediatric and pediatric cardiology, National Heart
Hospital, Sofia, Bulgaria
Congenital heart diseases /CHD/ affect not only the child, but
also the whole family system.
A project was developed in order: to determine different types of
coping strategies that parents use when having a child with
severe CHD; to provide trainings in order to gain helpful skills for
an easier coping with the disease; to create a handbook for
parents.
This study presents the first data from the research project. After
interviewing the parents a special questionnaire was developed.
It consists 5 main areas: demographic data and social, medical,
family and psychological coping strategies. The target group are
parents /mothers and/or fathers/ of the children with severe CHD,
aged 3 years to 14 years and after their corrective or palliative
heart operation. An SPSS statistical system was used to analyze
the data.
The preliminary results show that parents accept, understand and
present the stressful situation in a different way. They are using
different types of coping mechanisms to deal with the stress.
Mothers are more likely to use passive and emotional coping
strategies, while fathers prefer more active and problem solving
focused ones.
A training program and a handbook for parents have to be
developed during the next stages of the project to give the
parents a possibility to learn how to use new coping strategies
and to be more flexible.
Department of Pediatric Cardiology & Adult with Congenital Heart
Defects, IRCCS Policlinico San Donato, Italy
Objectives: Congenital heart disease patients often have to undergo
cardiac surgery and catheterisms. For this reason, we developed art
therapy interventions in order to contain pre-interventional anxiety,
fears and emotional stress. The study had two main objectives: (1) to
assess whether patients and their parents perceive art therapy as
being helpful during hospitalization and (2) to outline in which way art
therapy is perceived as helpful.
Methods: The sample consisted of 20 patients with congenital heart
disease (4-18 years of age). The following activities were proposed by
the psychologist and the educator pre and post intervention; structured
and free drawing and role-playing games in order to monitor and
promote emotional expression.
Results and Conclusions: Most of the patients and their parents found
the interventions as being helpful in the reduction of stress and
anxiety, in the facilitation of emotional expression and of bodily
perception and a sensation of empowerment when it comes to the
condition. Art therapy seems to be useful to support patients during
hospitalization; it is important to personalize the treatment in order to
fulfil the patients’ different needs.
Nutrition and motor skill assessments in children with
complex congenital heart disease
SWEDCON – The Swedish Registry of Congenital Heart Disease
Björkhem, G. and Thilén, U. Skåne University Hospital, Lund, Sweden
C. Brattström1, L. J. Söderberg2, I. Axelsson1, G. Björkhem1
1
Children and Adolescent Hospital, Lund, 2Children and
Adolescent Centre, Malmö 1&2Skåne University Hospital, Sweden.
Objectives
Evaluate nutrition and motor skill in children with complex
congenital heart disease.
Methods
Ten years of data from a follow-up program with 69 children, 0-17
years, was classified by a dietician concerning need of extra
nutrition and by a physiotherapist concerning motor skill
assessment.
Results
In the age groups 0-2 years 93-97% of the children had moderate
or large nutritional problems. In the group of children age 10-17
years 68% had no nutritional problems. In general, nutritional
problems decreased with age (p<0,001, Spearman Rank
Correlation).
In age groups 1-17 years 40-74% of children had no motor skill
problems and 10-19% showed large motor skill problems.
Moderate motor skill problems were most common in age groups
up to three years (25-56%) but no correlation between age and
frequency of motor skill problems was found (p>0.5, Spearman
Rank Correlation).
Out of 31 children with assessments from five years of age, ten
still had problems with both nutrition and motor skill, seven of
these children had Hypoplastic left heart syndrome.
Conclusion
Nutrition problems are common in children with complex
congenital heart disease. These problems decline over years but
can still be present in adolescence. Motor skill problems are
found at all ages but the majority of the children did not show
such problems. It appears that some complex congenital heart
defects can be more related to nutrition and motor skill problems
than others. Our study illustrates the importance of follow-up of
nutrition and motor skill at all ages in children with complex
congenital heart disease, so appropriate interventions can be
offered.
Objectives: To create a nationwide registry for children and adults
with congenital heart disease in Sweden. Diagnoses, operations,
interventions, hospital care, out-patient visits, examinations and quality
of life are entered. The registry should provide information about longtime outcome for different cardiac malformations and results of
treatment. The patients can be followed from birth to adult age and the
quality of care in different parts of Sweden can be compared.
Methods: The new registry SWEDCON is based on the previous
GUCH registry. It is web-based and data from the GUCH registry and
local registries for pediatric cardiology were imported. Quality of life is
registered for children using DISABKIDS and for adults using EQ-5D.
Every hospital has access to its own data and can compare data to
the whole country´s data but cannot see data from any other specific
hospital.
Results: At the start in February 2009 SWEDCON included 21 387
imported patients, 6815 from the previous GUCH registry and the rest
from the regional pediatric registries. 1500 patients were present both
in the pediatric and the GUCH parts of the registry. After the first 2
years the registry is now routinely used by the 7 major GUCH centers
and the 4 major pediatric cardiac centers including the 2 operating
centers in the country. The registry is also used by 24 regional
hospitals with pediatric cardiology units and this number is increasing
rapidly. A total of 18 844 out-patient visits have been registered in
SWEDCON since the start.
Conclusions: SWEDCON now covers all congenital cardiac surgery
and all specialized GUCH and pediatric cardiology units in Sweden. It
also covers most local pediatric cardiology clinics. Major successfactors have been the joint creation of the registry and the easy
availability of data for each separate hospital.
Assessment of quality of life (QoL) in children with heart
disease in a national registry
Pre-operative psychological wellbeing in grown-up congenital
heart disease patients
Birgitta Svensson, RN and Gudrun Björkhem, MD, PhD,
Department of Pediatric Cardiology, Skåne University Hospital,
Lund, Sweden
E. Callus, E. Quadri, C. Ricci, M. Carminati, A. Frigiola, A.
Giamberti, M. Chessa
Background: SWEDCON is a Swedish national registry for
children and adults with congenital heart disease in use since
2009. All major pediatric cardiac centers participate and most of
the smaller, a total of 28 units. Recently evaluation of QoL for
children has been added, based on physical, cognitive, and
psychosocial performance and on the DISABKIDS self estimate
questionnaire (short version). Registrations are done twice, at
ages 9-11 years and 14-17 years.
The aim of this work is to describe how assessment of QoL has
been introduced at the registering units and to present some
preliminary data.
Method: QoL data from the SWEDCON has been analyzed. In
addition, some data from our own department has been analyzed
in more detail.
Results: 7/28 units have started to register QoL. The
registrations are usually done by the nurse at the out-patients
clinics. 413 children have been evaluated in Sweden. 273 of
these registrations were done at our unit, 33% in the age group
9-11 years and 67% in the group 14-17 years.
DISABKIDS gives the result as a percentile compared to children
of the same age with chronic disease. The mean percentile for all
studied children was 75, while it was 61 for children with
univentricular heart. 39 individuals out of 278 needed
professional support (psychologist, physical therapist, dietician,
occupational therapist). Psychologist support was most needed.
Extra sports was also studied and 139/278 performed >3 hours of
extra sports per week including 7/15 children with univentricular
heart.
Conclusions: QoL registration has been easily integrated in the
daily clinical work in our out-patient’s clinic and the number of
participating clinics is increasing.
Preliminary results from DISABKIDS indicate a fairly good QoL
for cardiac children. In the future the SWEDCON registry will
provide more QoL data for different diagnostic groups and
changes over time.
Department of Pediatric Cardiology & Adult with Congenital Heart
Defect, IRCCS Policlinico San Donato, Via Morandi, 30, 20097 San
Donato M.se, Milan, Italy
Objectives: The objective of this study was to investigate if specific
cardiac conditions and patient disease severity evaluations are related
to psychological wellbeing and illness behavior during the preoperative period.
Methods: 115 patients (52 male, 16-73 years old) with congenital
heart disease evaluated the severity of their condition, using a
numerical rating scale ranging from 0 = least to 100 = most severe
condition. Psychological wellbeing was assessed with the
Psychological General Wellbeing Index (total score of < 60 indicating
severe distress) and illness behavior with the Illness Behavior
Questionnaire.
Results: Pre-operative psychological wellbeing was not found to be
related to both objectively evaluated medical parameters regarding the
condition and also subjective patient disease severity evaluation.
Psychological scores were similar to reference values from the Italian
population except for the Denial and Hypochondria score from the IBQ
questionnaire, Hypochondria being related to the patient’s education.
Conclusions: This study outlines the importance of assessing the
patients’ preoperative psychological state independently of the
severity of their condition. Targeted educational interventions
regarding the cardiac condition are recommended especially in
patients with lower education. The role of denial in this population,
needs to be further investigated.
Home Audiovisual Monitoring – A new way to support
families of children with congenital heart disease
The creation of a national peer to peer group support system for
adults with congenital heart disease in Italy
Catherine Michaelides, Rosie Browne, Brian McCrossan†,
Gareth Morgan†, Brian Grant†, Andrew Sands†, Brian Craig†,
Nichola Doherty‡, & Frank Casey†
E. Callus, E. Quadri, G. Campioni, S. Savini, D. Lucarini, M. Bedoni,
M. Carminati, A. Giamberti, M. Chessa
†
Department of Paediatric Cardiology, Royal Belfast Hospital for
Sick Children, Belfast, Northern Ireland, UK.
‡
Department of Clinical Psychology, Royal Belfast Hospital for
Sick Children, Belfast, Northern Ireland, UK.
Aims: Paediatric cardiology is a highly centralised subspecialty
with patients living often living large distances from the tertiary
care centre. A tele homecare programme for infants with major
congenital heart disease (CHD) was devised to support patients
and families during the stressful and vulnerable period following
discharge from hospital. This study aimed to assess the
sustainability, clinical utility and acceptability to clinicians and
parents of the tele homecare programme. Most importantly, this
study aimed to assess the impact on health service utilisation.
Methods & Results: Over 41 months, 83 infants with major CHD
were randomised to one of three groups: videoconferencing
support (n=35), telephone support (n=24) and a control group
(n=24). Patients in the two intervention groups received regular,
standardised remote consultations. Videoconferences were
facilitated by Integrated Systems Digital Network lines and
replaced by home broadband connections later in the study.
Clinicians were more confident making medical decisions
following videoconferences compared with telephone
consultations (p = 0.01). Both videoconference and telephone
support were very well received but parents expressed
significantly higher levels of satisfaction with videoconference
support (p=0.001). Parental anxiety was addressed more
effectively in the video group compared with the telephone group
(Anxiety score reduction = 6.1 vs 2.7, p <0.001). Health service
utilisation was 37% lower in the videoconferencing group
compared with both telephone support and control groups
(p<0.001) as was the risk of hospitalisation (p=0.006).
Conclusions: A telemedicine home support programme for
families of infants with major CHD is feasible, sustainable and
effective. Home support with videoconferencing is superior to
telephone consultations. Parents are highly satisfied with telehomecare. Tele-homecare significantly reduces parental anxiety,
health service utilisation and, in particular, risk of hospital
admission. Tele-homecare is now established as a nurse led
service and has become an integral part of our outpatient care.
Department of Pediatric Cardiology & Adult with Congenital Heart
Defects, IRCCS Policlinico San Donato, Italy
Objectives: To set up a national support system network for adults
with congenital heart disease in the following branches: Lombardy,
Sardinia, Calabria, Puglia, and Sicily.
Methods: Focus groups will be conducted in order to determine the
necessities of the patients in each Italian region in order to create an
optimal start-up of the groups and to decide how and when they will
take place. The focus groups will be recorded, transcribed and
analysed using Grounded Theory procedures.
Results & Conclusions: The first focus group has been held in
Lombardy, the group has decided to meet once every two months in
this phase. The considerations which emerged will be utilised in the
successive focus groups.
Psychosocial impact of implantable cardioverter
defibrillators (ICD) in young adults with Tetralogy of Fallot
Young People’s Coping and Adjustment when Living with
Implantable Cardioverter Defibrillator Treatment
Petra Opić1, Elisabeth M.W.J. Utens2, Philip Moons3, Dominic
A.M.J Theuns1, Arie P.J. van Dijk4, Elke S. Hoendermis5, Hubert
W. Vliegen6, Natasja M.S. de Groot1 Maarten Witsenburg1, Martin
Schalij6, Jolien W. Roos-Hesselink1
O'Curry, S. , Vigneswaran, P. , Lowe, M. , Coulson, D. & Byram, V.
1
Department of Cardiology, Thoraxcenter, Erasmus Medical
Center, Rotterdam, The Netherlands;
2
Department of Child and Adolescent Psychiatry, Erasmus
Medical Center- Sophia Children’s Hospital, Rotterdam, The
Netherlands;
3
Center for Health Services and Nursing Research, Katholieke
Universiteit Leuven, Leuven, Belgium;
4
Department of Cardiology, University Medical Center Nijmegen,
Nijmegen, The Netherlands;
5
Department of Cardiology, University Medical Center Groningen,
University of Groningen, Groningen, The Netherlands;
Preliminary research suggests that young people living with
implantable cardioverter defibrillator (ICD) treatment have a higher risk
of difficulty with psychological adjustment compared to their peers.
However, the psychological processes involved in this have to date
not been fully investigated. Theories of coping suggest that
adjustment to a stressor is related to one’s appraisal of the stressor
and the strategies employed to manage the consequent distress.
The present study conducted in-depth interviews with six adolescents
aged between 15 and 17 years living with an ICD. Interpretative
Phenomenological Analysis (IPA) yielded themes across five domains.
Device procedures and functions were reported to be anxietyprovoking and perceived changes to the body represented a challenge
to personal identity. The young people’s coping efforts were
understood to be motivated toward allowing them to pursue normal
adolescent developmental outcomes of autonomy, identity, sexuality,
and intimacy. A flexible range of coping strategies were developed by
the young people which can be understood within the context of
individual developmental factors, as they interacted with aspects of the
social world, particularly relationships with peers, parents, siblings and
hospital staff.
6
Department of Cardiology, Leiden University Medical Center,
Leiden, The Netherlands
Aims. To investigate the psychosocial impact of having an
implantable cardioverter defibrillator (ICD) in adults with
congenital heart disease (ConHD), in particular in patients with
Tetralogy of Fallot (ToF).
Methods. Included were 26 ToF-patients with ICD (age 44 ± 12
years), and two control groups consisting of 28 ToF-patients
without an ICD (age 40 ± 10 years) and a group of 35 older ICDpatients without ToF (age 72.0 ± 8 years). Psychosocial
functioning was measured using standardized, validated
psychological questionnaires.
Results. ToF-Patients with ICD showed diminished psychosocial
functioning in comparison to ToF-patients without ICD. This was
reflected by diminished physical functioning (p=0.01), general
health perception (p<0.01) and a lower satisfaction with life
(p=0.02). ToF-patients with ICD showed less satisfaction with life
(p=0.03), experienced more anxiety (p=0.01) and showed less
favourable coping styles in comparison to older age ICD-patients.
Physical functioning was better for ToF-patients with ICD than for
older ICD-patients (p=0.01). More inappropriate shocks were
found in ToF-patients with ICD compared to the older ICDpatients.
Conclusion. The combination of congenital heart disease and
ICD implantation has a major impact on psychosocial functioning
which should be taken into account when considering ICD
implantation in these young patients. In order to improve
psychosocial functioning, psychological counselling attuned to
the specific needs of these patients should be offered.
The study suggests that the struggle of young people with an ICD to
achieve a sense of autonomy, a positive identity and sense of
sexuality and sustain peer relationships may lead to difficulty in
accepting the device and complying with treatment recommendations.
The paper concludes by proposing a model of the triadic relationship
between the young person, their parents and the hospital, where the
nature of communication between the parties impacts upon the young
person’s ability to accept the treatment and take responsibility for
treatment management in the context of developmental needs and
with some suggestions for services about preparing young people for
ICD implantation.
Development of vocational choice and experience of career
entry in GUCH patients
Encouragement of vocational development in adolescents and
young adults with congenital heart defect
Elisabeth J. Sticker (1), Anja Schier (1), Hermine Nock (2)
(1) Development and Educational Psychology, Department
Psychology, University of Cologne
(2) Bundesverband Herzkranke Kinder e.V. Aachen
Elisabeth J. Sticker (1), Hermine Nock (2), Jörg Mutke (3)
(1) Development and Educational Psychology, Department
Psychology, University of Cologne
(2) Bundesverband Herzkranke Kinder e.V. Aachen
(3) Vocational Rehabilitation Centre Cologne
Introduction: Vocational choice and career entry are difficult but
important developmental tasks for adolescents and young adults.
This holds especially when these people are burdened with a
chronic disease such as a congenital heart disease (CHD).
Therefore, the first issue was how GUCH patients succeed in
solving these tasks. In healthy youths vocational development is
encouraged by their exploration behavior (searching information
and gaining experiences regarding different professions). Thus,
the second issue was if this also holds for GUCH patients.
Methods: In a pilot study GUCH patients were asked open
questions on their experiences regarding vocational choice and
career entry. The questions were answered by 47 persons all
over Germany. On the basis of these data a semi-structured
interview manual was constructed and conducted with 27 GUCH
patients, aged 21-35 years. The subjects were divided into two
groups: 17 with no or little, 10 with at least medium physical
restrictions. Currently a larger internet-based inquiry including a
control group is conducted. The talk will focus on the results of
the interview study.
Results: (1) Most subjects reported sufficient private support in
their vocational development and they succeeded in starting their
vocational career. Regardless of their amount of physical
restrictions some respondents complained about poor
occupational counseling by public agencies, e.g. school, some
reported physical and mental exhaustion during career entry. (2)
Patients with at least medium physical restrictions showed less
occupational exploration behavior and had more problems finding
an adequate occupation and starting their career.
Conclusion: Our data show the necessity of more specific and
early incipient counseling of GUCH patients, especially when
they are physically restricted. Counseling should start earlier
(already with 14-16 years) as it is practiced up to now. CHD
adolescents should be encouraged in their exploration behavior
to leave the door open for different vocational options.
Nowadays it is a great challenge for young people to decide, which
profession they should aspire. This is especially true when they suffer
from a chronic illness such as a congenital heart disease (CHD).
Studies on vocational development show that such adolescents are at
risk to exhibit problems in deciding for an adequate occupational
training or a course of studies. Furthermore, they are at risk to have a
delayed or unsuccessful career entry. One of the reasons for this is
that especially CHD-adolescents with physical restrictions show few
exploration behavior in the vocational area (searching information and
gaining experiences regarding different professions). Therefore,
several one-day-activities to promote vocational development were
conducted during the last two years in Germany:
(1) Two lecture presentations with discussions for adolescents with
CHD (including a specific training in application for employment)
and their parents (Frankfurt: 28-11-09, Berlin: 15-10-10)
(2) One lecture presentation with discussions for professionals
(experts in clinics, employment centers, integration services,
schools), including interviews with two GUCHES on the stage to
share their experiences (Cologne: 29-04-10)
(3) One series of workshops for CHD adolescents with special
emphasis on exploration behavior by trying out different jobs that
require training, and getting a specific training in application for
employment (Cologne, 22-01-11), and for their parents,
comprising a special coaching proposal.
On the basis of these positively evaluated activities it is recommended
that adolescents with CHD are coached specifically regarding their
vocational decisions and career. In this target group this should start
already two years before school graduation.
Future projects are to develop, evaluate and implement an
interdisciplinary coaching for CHD adolescents. A project proposal for
the Ministry of Labor is under way.
Psychosocial needs of families with children with congenital
heart defects
The experience of families who have a child with complex CHD:
A psychosocial perspective.
Dr B Tarrat, Spain
Catherine Matthews, Deirdre O’Neill, Sally Heron (OLCHC)
The objective of this project was to perform a nationwide study
about the psychosocial needs of families with children with
congenital heart defects, their current health care situation and
the resources at their disposal in order to provide them the
support they need.
Ruth Davidson, Claire Griffin, Suzanne Guerin (School of
Psychology, University College Dublin)
The study has been running two years, beginning in March 2008.
We had the experience of all the psycho-social work which the
patients’ associations had been doing, for years, with families in
hospitals.
With this information, the Social Psychology Department of the
University Complutense of Madrid developed three
questionnaires based on the three important moments in the
process of this disease: diagnosis, hospitalization and home
return. In each of these moments, we measured the emotional
state of families, their concerns, the resources needed, the
resources used and the assessment of such performance.
The project was initiated and coordinated by Fundación Menudos
Corazones in collaboration with the associations ACCAB and
Todo Corazón de Murcia, and a team of experts from the Social
Psychology Department of the University Complutense of Madrid.
The number of questionnaires which has been evaluated is 354.
The most important outcomes are related to the information’s
need of families and their knowledge about existing resources.
We have also been able to go further into the different levels of
emotional intensity related to living the illness of a child.
At the moment, with these results, we have started to work on
different lines of family support.
The aim of this study was to chart the experience of families who
have a child with a complex congenital heart condition looking in
particular at psychosocial impact, coping and adaptation. This study
used a mixed methods approach, specifically an embedded
qualitative design. Face to face interviews were conducted with 11
mothers, seven fathers, six children with CHDand 11 well children in
the families. This semi-structured interview incorporated quantitative
measures with a significant qualitative component. Quantitative
measures were used to ascertain psychosocial well-being of families
and children, and included Pediatric Quality of Life Inventory (Varni,
Seid, & Rode, 1999), Strengths and Difficulties Questionnaire
(Goodman, 1997), Family Assessment Device (Epstein, Baldwin &
Bishop, 1983), and Impact of Illness of the Family (Stein &Riessman,
1980). Qualitative interviews were used to elicit extensive narratives
about family and individual experiences of CHD. Qualitative data
were analysed using principles of thematic analysis, and a range of
psychosocial impacts and resources were identified by parents and
children.
Principal themes identified in parent and child interviews include a
range of psychosocial impact on individuals, the nuclear and extended
family. Themes were diverse and included personal emotional impact,
impact on school-work, peer relationships, working arrangements, and
social opportunities. Themes related to psychosocial resources central
to coping were also identified and were discussed briefly.
Furthermore, the impact appeared to be most pronounced at critical
times during the child’s illness/treatment trajectory (time of diagnosis,
hospitalisations). The theme of adjustment was also found, with the
impact of the heart condition seeming to have lessened over time to
the present day. Methodological issues and implications of the findings
for future research and practice are discussed.
The self-reported qualitative experience of children who
have a brother or sister with a congenital heart condition.
Davidson, Ruth1; Guerin, Suzanne1; Griffin, Claire1&2; ,
Matthews, Catherine3; O’Neill, Deirdre3 & Heron, Sally3. 1&2
University College Dublin, Ireland. 3 Our Lady’s Children’s
Hospital, Crumlin, Dublin 12, Ireland.
Objective: The aim of this research was to explore the
experience of children who have a brother or sister with a
congenital heart condition (CHD).
Methods: Participants were eleven young people (7 - 17 years)
who have a sibling with CHD. Qualitative data were collected
using individual semi-structured interviews.
Results: Results suggest that children and young people have
varying levels of knowledge about their sibling’s condition and
report some impact on both themselves and others in the family.
In addition, children report the use of a variety of behavioural and
cognitive coping strategies.
Conclusion: It appears that overall, children and young people
adapt well to the presence of such an illness in their family and a
number of factors which may influence this adaptation are
discussed.
Child and family adjustment in the face of congenital illness What protects, what increases risk and can psychological
intervention make a difference?
Findings and Updates from the Congenital Heart Disease
Intervention Programme (CHIP) project
McCusker, C., Doherty, N., Casey, F., Rooney, N., Craig, B., Sands,
A., Mulholland, C., Armstrong, M., Molly,B.
During 2001 – 2004 two populations of children, and their families,
with significant congenital heart disease, were recruited into the CHIP
project. One group (N = 70) was comprised of newly diagnosed infants
awaiting their first surgery. The second (N = 90) comprised four year
old survivors of the disease just before starting school. We first
charted their baseline functioning on physical, neurodevelopmental,
psychosocial and family dimensions and examined factors associated
with good –v- poor adjustment.
Participants were randomly assigned to a CHIP intervention or
“treatment as usual” control group. The CHIP intervention had a
secondary prevention ethos and was explicitly derived from a
transactional stress and coping model of familial adjustment to chronic
childhood illness and disability. The infants and children and their
families were then followed up over six and twelve months and we
have recently completed a seven year follow-up.
Key messages of the research include:



The greater importance of maternal mental health than
disease factors in predicting current AND future child
adjustment to chronic illness – behaviour, activity and illness
related behaviours.
The underlying ryelevance of family functioning and coping
skills, rather than severity of disease, in mediating maternal
mental health.
That relatively brief psychological interventions can make a
difference to both. Positive outcomes, for both populations,
following CHIP intervention were demonstrated on maternal
worry, anxiety and coping, child development and
behaviour, feeding and preponderance of health seeking
behaviours. Some differences appear to be echoing right
through to the seven year follow-up, without intervening
booster sessions.
The CHIP study represents a rare longitudinal data set involving
children with congenital heart disease and their families, but with
generalisable implications for children with chronic illness and
disability in general. How this initiative has informed new practices at
the regional Royal Belfast Hospital for Sick Children will be noted
together with strategic policy implications for the future.
Exercise Training Improves Activity and Psychosocial
Wellbeing in Adolescents with Congenital Heart Disease
(CHD)
Morrison M.L.1, Sands A.J. 1, McCusker C.G. 1, 2, McKeown P.P. 2,
McMahon M. 1, Gordon J1, Craig B.G. 1, Casey F.A. 1
1
2
Department of Paediatric Cardiology, The Royal
Belfast Hospital for Sick Children, Belfast, Northern
Ireland
The Queen’s University of Belfast, Belfast, Northern
Ireland
Ability to exercise is an important quality of life measure and
indicator of physical health. Recently, exercise training has
emerged as a method of improving activity and psychological
health in some patient groups. Many patients with CHD are now
adolescents; this time of personal development may be an ideal
opportunity to introduce positive lifestyle changes. We aimed to
ascertain if motivational techniques and a structured exercise
program could increase activity and improve wellbeing.
Patients aged 12-20 years were identified using the Northern
Ireland regional database (HeartSuite). Participants completed
standard psychological measures and underwent evaluation of
exercise ability (formal exercise stress testing and measurement
of free-living activity using an ActiGraph accelerometer).
Following randomisation the intervention group attended an
activity day where they were given a personal exercise
programme. The control group received their usual level of care.
Patients were followed up at 6 months for reassessment, results
obtained were analysed using parametric methods.
143 patients (mean age 15.6 years) consented to participate, 86
were male (60%) and 105 had major CHD (73%). Psychological
health appeared well preserved at baseline with few differences
between study groups. On formal exercise testing, complex
patients performed worse at peak exercise, however, patients
with major CHD had significantly higher activity counts. 101
patients (70.6%) attended for reassessment. There was a
significant increase in duration of exercise test (Pillai’s Trace 5.34
(p 0.023)) and average activity counts per minute (Pillai’s Trace
46.55 (p <0.001)) for the intervention group at reassessment.
The intervention group also had trends toward improved mood
and self esteem.
Exercise training significantly improves peak exercise capacity
and free-living activity in this group. Increased activity also
appears to have a positive effect on self-esteem and mood
parameters. Future interventions targeted around this area may
considerably improve outcomes for this population.
I’ve only got half a heart…understand me?
Authors & Institution: Jon Brunskill, Suzie Hutchinson – Little Hearts
Matter
Corresponding Authors Name: Jon Brunskill, Suzie Hutchinson
Corresponding Authors Email: jon@lhm.org.uk, suzie@lhm.org.uk
Throughout the last 20 years the medical goal for any child born with a
single functioning ventricle was to keep them alive. Experimental
surgery, low oxygen saturation rates and life-long disability created
many challenges for both the child and their family.
In 2010 the success rates for Norwood and Fontan surgery have
increased to allow life and reduce the complications that these
children face. Today we expect these children to attend a normal
school and to succeed within their education; we also hope that they
will reach an independent adulthood.
In 2009 Little Hearts Matter created a Youth Council, which allows
young people directly affected by a single ventricle condition to have
an influence in service planning, development and evaluation. This
group of eight young people wrote a constitution and elected a
chairperson to represent them at Trustee meetings.
The Youth Council explored the obstacles that they, and the hundreds
of children that they represent, face in day to day life. They identified a
lack of understanding in school as the most pressing issue that they
faced. After a consultation with their membership and Cardiac Liaison
teams, the Youth Council believed that “If teachers became more
aware of the problems that we face, they will know how to avoid these
problems and to help include us. Then everybody will be able to reach
their full potential in school.”
The outcome was dozens of young people working together to create
a DVD for teachers in secondary school. The DVD tackles subjects
such as medicines that the young people take, surgical treatment,
feeling different and their future aspirations. The DVD blends drama
with interviews from medical and social experts. The young people
storyboarded, scripted and directed the entire project, which can be
viewed online on the LHM media site:
www.littleheartsmatter.org.uk/cat/youth
How I Feel A study into the impact of living as an adolescent
with a single ventricle heart condition
Support to CHD patients
Stella Eleftheriadou – Cyprus Parent Support Group
Authors & Institution: Jonathan Brunskill, Suzie Hutchinson RGN
RSCN, Jo Wray, Louise Hall Isabel Baumber, Jackie Blyth, Olivia
Hutchinson - Little Hearts Matter
Corresponding Authors Name: Jonathan Brunskill; Suzie
Hutchinson
Corresponding Authors Email: jon@lhm.org.uk;
suzie@lhm.org.uk
Every year, there are between 400 and 600 diagnoses of single
ventricle heart conditions, and these children require a series of
palliative surgeries in order to survive. Due to the increasing
success of these surgeries, the number of children with the
condition surviving into teenage years grows every year. This
objective study’s main aim was to investigate how living with this
condition impacts the life of the adolescent in relation to family
and friend relationships, hospitalisation and medication, school
life, body image, and future aspirations.
Single ventricle patients aged between 10 and 18 were recruited
to complete a seven part questionnaire. This was a self
perception evaluation from the patients, with zero interference
from parents or carers. The study enrolled 31 patients, who gave
a huge amount of information on seven key areas of adolescent
life.
It was reported that understanding of the condition amongst
children was lower than expected. Understanding from school
staff in particular was inconsistent; less than a fifth of the young
people believed that all of their teachers understood their
condition. Over a third of the young people excluded from sports
and extra-curricular activities were either sent to the library or an
office, or made to simply watch. It was reported that this left the
young people feeling lonely or frustrated.
The How I Feel study quantifies, in part, overwhelming anecdotal
evidence reported from either the patients or their parents. It is
hoped that the findings will help influence charity service
provision, governmental policy and educational reform. The study
will support such proposals as the Schools (Health Support) Bill,
currently being approved by British Parliament, and the Health
Conditions in Schools Alliance. The results will be published for
the interest of health professionals, particularly those working in
specialist cardiac centres.
Expecting a child is the greatest source of joy in a family.
However, some families have experienced and will experience the
problem of Congenital Heart Disease along with the birth of their child.
Joy turns into sadness and worries, emotions for which you have to
find the inner strength to control and deal with, in the best possible
way, so that the child can grow up in a normal environment.
Family and friends are important people in our lives. It is through their
support and through the support of the people of the Association that
they are assisted to understand the problem of Congenital Heart
Disease and to deal with it. Ultimately, the most important people to
assist with the problem are the child’s parents.
Everyday, step by step, with small references to its problem, the child
will find out whatever he/she needs and will be able to deal with it in
his/her own way.
His/her participation in social activities from childhood, as well as in
the various programmes of the Association such as the programme
“Exercise and Health” will improve the quality of their life and at the
same time it will have a significant effect on their physical and
psychological health.
When children with Congenital Heart Disease grow up, their needs
change. Teenagers function in a different way. Their inner revolution
begins, the flirting, sexual activity, going out etc.
Teenagers need to feel secure and to have support and understanding
from their social environment in order to deal with their problem.
Doctor-child-family-psychologist cooperation is essential, and for this
reason the Association has created a Support Centre, providing
whatever help is needed.
Girls consider marriage and pregnancy, and the Association, wanting
to help them, organised a special programme on pregnancy, with two
medical conferences and informative lectures for its members.