CONTENT

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Proceedings from HOSPITAL KANAK-KANAK PERMATA

Personalised and Precision Medical Care for Children 193

Professor Datuk Dr. A Rahman A Jamal

Controversies in Vaccination 198

Dato’ Dr. Musa Mohd Nordin

Controversies in Vaccination 206

Professor Dr. Sharifa Ezat Wan Puteh

Childhood Obesity and Nutrition 208

Miss Jill Koss

Child Safety 211

Professor Dato’ Dr. Mahmud Mohd Nor

Child and Family Friendly Healthcare 217

Miss Jill Koss

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193

PLENARY:

PERSONALISED AND PRECISION MEDICAL CARE FOR CHILDREN

PROFESSOR DATUK DR. A RAHMAN A JAMAL

UKM Medical Molecular Biology Institute, Universiti Kebangsaan Malaysia, Jalan

Yaacob Latif, Bandar Tun Razak, Cheras, 56000 Kuala Lumpur, Malaysia

(rahmanj@ppukm.ukm.edu.my)

The completion of the human genome project in 2003 has paved the way for a deeper

understanding of diseases at the molecular level. The term genomics medicine has since

emerged as clinicians and researchers capitalized on the knowledge of the genome to

improve the management of many diseases. In the past decade, the term personalized or

precision medicine was introduced to represent the tailoring of treatment to each individual

based on a person’s unique genetic makeup, environment and lifestyle (Hodson, 2016). In

simple terms, it means giving the right treatment to the right patient at the right time with the

right outcome. The concept is not entirely new as in the practice of blood transfusion where

each patient is given the appropriate blood units based on their blood groups. However, the

emergence of genome data has allowed a more comprehensive application of personalized

medicine to make it more precise.

For a long time, doctors have been treating patients with the same disease using the same

approach, the same drugs and the same dose. The outcomes of treatment have strongly

suggested that the individual variation must be taken into account and the one-size fits all

approach is no more valid for many diseases. Studies have shown that anti-cancer drugs are

effective in perhaps 25% of cases only, that 6-8% of patients given medications will have

adverse reactions, that there is a wide variation in response to treatment from one patient to

another despite giving the same dose (adjusted per kg body weight) of the same drug, and

that many non-communicable diseases have the component of gene-environment interaction

in terms of disease pathogenesis.

The advances in genome sequencing technologies, and the cheaper cost, has allowed more

and more patients to be profiled at the molecular level. There are still a lot to be learned but

certainly we know more than before. In the case of cancers, the whole genome sequencing

of tumour tissues has enable us to understand that every tumour has its own molecular

signature which has both prognostic value but also has allowed researchers to identify what

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is termed now as actionable or targetable mutations. The term ‘targeted therapy’, once

labeled decades ago as the magic bullet for the treatment of cancer, is now a reality for

many different types of cancer. Many tyrosine kinase inhibitors are now in the market and

used to improve the outcome of cancer patients.

Many developed nations have already launched big initiatives in precision medicine in the

past 5 years. In 2012, the Prime Minister of UK launched the 100,000 Genomes project in

England. The project aim was to sequence 100,000 genomes which will include cancers,

rare diseases and also pathogens. The project is spearheaded by the National Health

Service (NHS) with extensive collaboration with top university hospitals and the industry.

One of the earliest benefactor of the project was a young girl with a rare disorder. She

presented with a history of seizures and despite many tests and investigations, the doctors

failed to clinch a diagnosis. Whole genome sequencing was performed on her and both

parents. The bioinformatics analysis on the sequence data revealed a deletion in one copy

of her SLC2A1 gene. This gene plays a role in the uptake of glucose into the brain cells. She

was put on a ketogenic diet and her seizures have stopped. This was just one of the many

examples how whole genome or whole exome sequencing has enabled the diagnosis of

many rare diseases and in a proportion of the patients, to identify the specific intervention as

well. It is believed that the approach of precision medicine can solve between 30-40% of rare

diseases.

In the USA, President Obama launched a precision medicine initiative (PMI) in 2015 with a

USD215 million grant, focusing on non-communicable diseases, including cancers, and also

setting up of a Cohort project (Collins and Varmus, 2015). This initiative, similar to the UK

100,000 genomes project, will also performed whole genome sequencing on selected

diseases.

At the UKM Medical Molecular Biology Institute (UMBI), Universiti Kebangsaan Malaysia, we

have already started offering tests for precision medicine. We have recently performed

whole exome sequencing on patients with Pendred syndrome and VACTERL-H syndrome

and discovered disease-causing mutations in the cases (Chow et al, 2017). Our institute is

the first in the country to offer whole exome or whole genome sequencing for rare diseases.

UMBI has also performed whole exome sequencing on hundreds of tumour samples and

some of the results have been published. Our institute has also embarked on whole genome

sequencing of colorectal cancers. This project is the first and largest of its kind in the local

setting.

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The scope of precision medicine and how it is applied is shown in the following table.

Scope Application

Risk

assessment

Genetic testing will reveal one’s predisposition to disease. Examples here

include the BRCA1/2 gene testing which will identify those at high risk of

developing breast cancer.

Diagnosis and

classification

Genetic testing will allow accurate diagnosis allowing individualized

treatment strategy. For rare diseases and also diseases which are difficult

to diagnose, the precision medicine approach will enable a diagnosis to

be clinched in up to 40% of cases. For disease classification, a good

example will be in primitive neuroectodermal tumours (PNET) which are

common brain tumours in children. There is now a molecular classification

of PNET which takes into account alteration in the FOXR2, CIC, MN1 and

BCOR genes (Sturm et al, 2016).

Prevention Genetic testing will also allow behaviour/lifestyle/treatment intervention to

prevent disease. A good example is the detection of genetic variants or

polymorphisms which confer a high risk of non-communicable diseases

such as diabetes. Another example is the detection of Lynch syndrome

which involves the testing of MLH1, MSH2, MSH6 and PMS2 genes

(Shawki and Kalady, 2016). Those who have mutations in these genes

will have a 70% of getting colorectal cancer.

Detection Many cancers release nucleic acids and other biomarkers into the

circulation. Detection of molecular markers circulating in the blood (liquid

biopsy) will enable the early detection of cancer or also disease relapse.

Treatment Genetic testing will also enable improved outcomes through targeted

therapies and avoidance of adverse reactions. For cancer, one can do

whole exome or whole genome sequencing to identify the actionable or

targetable mutations (Harris et al, 2016). Another option is to use

customized cancer panels which covers a certain of number genes

containing the candidate mutations. Another big application is in

pharmacogenetics. A good example is the testing for HLA-B*1502

polymorphism before commencing tegretol for patients with epilepsy.

Patients who have this genetic variant will have a high risk of developing

Stevens Johnson syndrome.

Prognostication

and

management

Certain molecular profiles confer a poorer prognosis in certain diseases.

For example, in paediatric patients with medulloblastoma, those in the

WNT sub-group have an excellent outcome (Taylor et al, 2012). Serial

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fluid biopsies and molecular testing can help the active monitoring of

disease response and disease progression.

What will our new UKM Permata Children’s Hospital (UPCH) offer in terms of precision or

personalized medicine? The UPCH will work closely with the UKM Medical Molecular

Biology Institute (UMBI) to develop and offer a wide array of genetic tests at an affordable

cost. UMBI is already offering molecular diagnostic tests for patients with thalassaemia,

cystic fibrosis (yes we do have a good number of cases in Malaysia) and also

pharmacogenetics testing for HLA-B*1502 (Then et al, 2013). UMBI is also already offering

whole genome and whole exome sequencing services to a wide variety of patients including

cancers and rare diseases.

The personalized and precision medicine approach is already driven by the genome

sequencing technologies and also Big Data. As we accrue more sequencing data from

patients, we will learn more about the diseases and potentially this can lead to better

approaches to management.

References

Chow YP, Abdul Murad NA, Zamzureena MR, Khoo JS, Chong PS, Wu LL, Jamal R. Exome

sequencing identifies SLC26A4, GJB2, SCARB2 and DUOX2 mutations in 2 siblings

with Pendred syndrome in a Malaysian family. Orphanet J Rare Dis. 2017. (Accepted for

publication)

Collins FS and Varmus H. A new initiative on precision medicine. N Engl J Med.

2015;372:793-795.

Harris MH, DuBois SG, Glade Bender JL, Kim AR, Crompton BD, et al. Multicenter

Feasibility Study of Tumor Molecular Profiling to Inform Therapeutic Decisions in Advanced

Pediatric Solid Tumors: The Individualized Cancer Therapy (iCat) Study. JAMA

Oncol. 2016;2(5):608-615. doi:10.1001/jamaoncol.2015.5689.

Hodson R. Precision medicine. Nature. 537;S49:doi:10.1038/537S49a

Shawki S, Kalady MF. Recent advances in understanding Lynch syndrome. F1000

Research. 2016;5:2889.doi:10.12688/f1000research.9654.1.

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Sturm D, Orr BA, Toprak UH, Hovestadt V, Jones DT, et al. New Brain Tumor Entities

Emerge from Molecular Classification of CNS-PNETs. Cell. 2016;164(5):1060-72. doi:

10.1016/j.cell.2016.01.015.

Taylor MD, Northcott PA, Korshunov A, Remke M, Cho YJ, et al. Molecular subgroups of

medulloblastoma: the current consensus. Acta Neuropathol (2012) 123:465–472.

Then SM; Zamzureena MR; Azman Ali R and Jamal R. Pharmacogenomics screening of

HLA-B*1502 in epilepsy patients: How we do it in the UKM medical centre, Malaysia.

Neurology Asia. 2013;18:27-29.

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SYMPOSIA:

CONTROVERSIES IN IMMUNISATION

DATO’ DR MUSA MOHD NORDIN FRCP, FRCPCH, FAMM

CONSULTANT PAEDIATRICIAN & NEONATOLOGIST

DAMANSARA SPECIALIST HOSPITAL

MALAYSIA

INTRODUCTION

“Those who do not remember the past are condemned to repeat it” George Santayana

We have now sadly become the victims of our success. Many have forgotten that, not long

ago, diseases like smallpox killed 1 out of 3 patients, while polio caused significant muscle

paralysis leading to breathing cessation. Children had to be placed in dreaded iron lung

chambers to help them breathe, and not many survived to recount their horror.

The global burden of Under-5 deaths was 8.8 million in 2008 (diagram 1) [1]. One child dies

every 20 seconds from a disease preventable by vaccines. To many global health agencies,

this is a preventable human tragedy. Hence, the World Health Organisation (WHO), the

United Nations Children’s Fund (UNICEF) and their global partners have undertaken serious

initiatives in the Expanded Programme on Immunisation (EPI). Approximately 2.5 million

deaths are prevented and 750,000 children are saved from disabilities every year by the EPI.

Vaccine preventable diseases (VPD) are still responsible for 2.5 million under-5 deaths each

year. If the currently available routine and new vaccines are better and more

comprehensively distributed, utilized and outreached to children in developing countries,

there is a potential to save more lives, prevent more disabilities, accrue more societal and

economic benefits and enhance national and global security (diagram 2 and 3) [2].

This will save more lives, further reducing under-five mortality by at least 25% to achieve the

Millennium Development Goal number 4 (MDG4), which is to reduce the under-5 mortality

rate by two-thirds between 1990 and 2015.

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Diagram 2: Vaccine preventable disease cases and deaths averted in GAVI countries

extrapolated from 2011 – 2020 with universal immunization

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Diagram 3: Immediate and long-term economic benefits in GAVI countries extrapolated from

2011 – 2020 with universal immunization

RESURGENCE OF VACCINE PREVENTABLE DISEASES

The decades of efforts by international agencies, governments and NGOs however, have

been hampered by the anti-vaccination movement of late. Unfortunately, a small number of

physicians support this movement, buoyed by the vast majority comprising individuals or

small groups of varying backgrounds who create noise through social media and blogs.

Virtually all of their opposition of vaccine is based on emotions, personal experiences and

quoting “anti-vaccine gurus” on social media who do not conduct research but thrive on

writing blogs for conspiracy theory websites. Realising they have insufficient data to prove

their allegations, these conspiracy theorists utilise emotional testimonies and

unauthenticated sweeping statements as their strategy.

There is virtually no credible research or studies from the anti-vaccination group. Many of

them quote blindly Wakefield’s study that linked the MMR (Measles, Mumps & Rubella)

vaccine with autism, which has since been withdrawn from the Lancet when it was

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discovered that it was flawed and fraudulent [3]. The study raised great fear among parents

about MMR, leading to a significant decline in the coverage of MMR vaccination in many

countries. The US which had eliminated measles in 2000 is now suffering its worst measles

epidemic in 20 years. The Disneyland measles outbreak in 2015 spread to 24 states,

Canada and Mexico [4]. In the 2011 measles outbreaks in Europe, there were over 30,000

cases, 7 deaths, 27 cases of measles encephalitis, and 1,482 cases of pneumonia. In

Malaysia, there was a threefold increase in measles cases in 2015 compared to the previous

year, with 2 deaths.

The World Health Organisation (WHO), Centre for Diseases Control and Prevention (CDC)

and other global health agencies have unequivocally stated that MMR and all vaccines have

no link whatsoever with autism or other similar neurological disorders [5,6]. All parents and

guardians should feel totally reassured by this and not be influenced by anti-vaccine news

on social media.

VACCINE SAFETY CONTROVERSIES

Any medical intervention is bound to be associated with some degree of risks. The potential

adverse effects of immunization must be carefully weighed against the numerous individual,

societal and economic benefits accrued from the WHO Expanded Program of Immunisation.

It is not logical to avoid any form of medical intervention solely because one elect to avoid

risks. This paradigm of thought which is propagated by the anti-vaccine groups is incoherent

and irrational because doing nothing is also associated with risks, namely the increased risk

of acquiring VPD which can lead to outbreaks of epidemics and pandemics of diseases,

increased and prolonged hospitalisations, increased utilization of expensive treatment,

increased deaths and increased physical and intellectual disabilities.

It is like suggesting to us not to eat breakfast because 250 choke on their breakfast and die

each year or not to take our daily baths because 350 drown and die in the bath-tub each

year, which is quite obviously absurd! [7] The benefit risk ratio favours these daily acts of

living and that is why we continue to eat breakfast and bathe ourselves.

Similarly, the benefit risk ratio unequivocally favours the act of immunization. Our children

and our society enjoy monumental benefits compared to the small risks associated with

vaccinations. The common side effects associated with immunisations are pain, redness

and swelling at the injection site which often go away quickly, which may be considered as

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mild and transient only. Serious side effects following vaccination, such as severe allergic

reactions, are extremely rare [8].

MISPERCEPTON ABOUT PARENTAL RIGHTS

The health care professional may have the greater knowledge of vaccine preventable

diseases, of possibilities, risks, treatment, outcomes and the options of prevention with

immunisations. Nonetheless, the principle of autonomy respects and values the individual (or

the parents or legal guardians) as the one who makes the self-defining choices upon which

he then acts and for which he is accountable.

The principle of individual autonomy however needs to be considered within the context of

the wider public interest and benefits. It is this vein that medical interventions, such as the

global immunization programs that have been proven to promote and protect the general

health and well-being of the public have priority over the considerations of the individual

interest.

Another important moral consideration is to ensure that the individual choices one makes

does not harm others. Those who do not immunize against VPD are at increased risk of

being infected. They therefore might pass on the infection to others, who may then be

harmed! Almost all of those infected with measles in the US, Europe and Malaysia outbreaks

were in the unvaccinated persons [9].

The omission to vaccinate has obviously impacted negatively on the well-being of the public,

which would be enough arguments for policy makers to impose an obligation to act. The

recent Australian “no jab, no pay” policy, plans to withdraw childcare and welfare benefits

from Australian parents who refuse to vaccinate their kids. Thus, parents who decide against

immunisations could be up to $15,000 worse off per child.

If sufficient numbers of people in a community are immunized, usually in excess of 80%,

then the protection against VPD is conferred to virtually all persons in the community. This is

known as herd immunity. This community immunity offers protection to vulnerable segments

of the community who cannot be immunized due to various reasons e.g. too young, have

cancers, have HIV/AIDS, are on chemotherapy or radiotherapy. The common good of the

community is served which extends beyond the individual. In addition, the community

benefits from the economic savings and improved security as a result of the immunization

programs [10].

A growing number of Muslim parents have fallen prey to the “anti-vaccine” camp. Some

believe that immunisation is part of the western or Zionist scheme to weaken Muslims and

undermine the health of their progeny. Others are led to believe that there is non-halal (non-

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permissible) substances in vaccines. Both groups are victims of misinformation. Muslim

scholars around the world have unanimously proclaimed that the Higher Objectives of the

Islamic Jurisprudence (Maqaasid Shariah) is the promotion of the common good and benefit

(maslahah) and the avoidance and protection from harm (mafsadah) towards the

enhancement and preservation of justice (adalah) and the welfare and wellbeing of the

community (ummah) [11].

RELIGIOUS MISINTERPRETATIONS

According to the Muslim scholars, the Quran and authentic traditions (hadiths) give utmost

priority to prevention and protection against all forms of personal and social misconduct [12].

In the context of health, it prioritises the golden rule that “prevention is better than cure”.

Immunisation enhances the immune system of a child and the effectiveness of vaccines has

been scientifically demonstrated in global immunisation programmes. The widespread use of

the smallpox vaccine has led to its eradication in 1980. The last few cases were from two

Muslim countries - Bangladesh and Somalia. Polio has been eradicated from most parts of

the world, but remains endemic in two Muslim countries - Afghanistan and Pakistan [13].

This, unfortunately, is due to conservative and ill-informed Muslim scholars who advised

against immunisation.

Immunisation exhibits all the hallmarks of a preventative health strategy that has saved lives

and prevented intellectual and physical disabilities. True to the principles of Islamic

jurisprudence (sadduz- zaraik), it has closed avenues to inflict harm, damage and

destruction. All the vaccines in the National Immunisation Programme (NIP) have been

scrutinised by experts in jurisprudence (JAKIM and the National Fatwa Council) and Science

(Ministry of Health), leaving no question of their efficacy, safety and permissibility (halal).

The global Expanded Program of Immunisation has been shown and proven to be a very

safe, effective and cost savings global child survival strategy. With the exception of clean

drinking water, immunisation is the most powerful public health intervention program. We

should therefore not be gullible nor easily persuaded by various irresponsible groups which

spread rumours in the various media that immunization is harmful, not effective and

irreligious.

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REFERENCES

1. Black RE et al. Global, regional, and national causes of child mortality in 2008: a systematic

analysis. Lancet 2010 Jun 5;375(9730):1969-87

2. Stack ML, et al. Estimated Economic Benefits During The 'Decade of Vaccines' Include

Treatment Savings, Gains in Labor Productivity Health Affairs 30, no.6 (2011):1021-1028

3. The Editors of the Lancet, Feb 2, 2010. RETRACTED: Ileal-lymphoid-nodular hyperplasia,

non-specific colitis, and pervasive developmental disorder in children

4. MMWR. April 17, 2015

5. http://www.who.int/vaccine_safety/committee/topics/mmr/mmr_autism/en/

6. http://www.cdc.gov/vaccinesafety/concerns/autism.html

7. Paul AO, Louis MB. What every parent should know about vaccines. Macmillan USA. 1998

8. Alain Joffe. Anaphylaxis after vaccination is rare. Reviewing McNeil MM et al. J Allergy Clin

Immunol 2015 Sep 28. http://www.jwatch.org/na39392/2015/10/23/anaphylaxis-after-

vaccination-rare#sthash.l033ezuu.dpuf

9. 9. http://www.cdc.gov/mmwr/preview/mmwrhtml/mm6047a1.htm

10. Musa MN, Siti AI, Chan LJ. Immunisation controversies. What you really need to know.

August 2015

11. Shari’ah Intelligence. The basic principles and objectives of Islamic jurisprudence. Islamic

Education Trust Nigeria. 2015

12. Federation of Islamic Organisations in Europe: European Council for Fatwa & Research.

http://euro-muslim.com/en_u_foundation_details.aspx?news_id=343

13. http://www.polioeradication.org/Dataandmonitoring/Poliothisweek.aspx

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SYMPOSIA:

CONTROVERSIES IN VACCINATION

PROF DR SHARIFA EZAT WAN PUTEH, MD, MPH, PhD

Head, Community and Industries Liaison Office

Faculty of Medicine and HCTM

PPUKM

sh_ezat@ppukm.ukm.edu.my

Vaccine is one of the most cost effective and important measure to control vaccine

preventable diseases. It has contributed to reduced mortality, increased life years and

increased QoL amongst children and nations citizens. Vaccines are not cheap and are most

effective if coverage is high and proper targeting are available. Below are a few

controversies related with vaccines.

1. Relationship of MMR and Autism

The issue of Dr. Andrew Wakefield, a gastroenterologist in the UK, postulate the ‘leak-gut’

theory. However similar investigation with a larger sample failed to reveal persistence of

measles virus nucleic acids. The Lancet formally retracted the study in February 2010 and

The Institute of Medicine (IOM) has concluded no evidence.

2. Thimerosal in onset to Autism

Mercury-based preservative, used for decades in United States in multi-dose of medicines

and vaccines. No harm by the low doses, except for minor reactions like redness and

swelling. However, in July 1999, the Public Health Service agencies, the American Academy

of Pediatrics, and vaccine manufacturers agreed that thimerosal should be reduced or

eliminated in vaccines. With the exception of some in influenza vaccines, none of the

routinely recommended pediatric vaccines contain thimerosal as a preservative.

3. Moral & religious concerns.

Some parents have refused certain vaccinations for their children based on religious

objections. The moral opposition is due to the cell lines in which vaccine viruses are grown

from ‘non halal’ materials such as from aborted fetuses. Also some vaccines (e.g. the HPV

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vaccine) promotes fradulent sexual practises. Used widely by anti-vax movements, as

reasons not to be vaccinated against sexual disease prevention.

4. Nervous system disorders: encephalopathy

Whole-cell pertussis vaccines in the 1940s marked the beginning of a dramatic decrease in

the morbidity and mortality associated with Bordetella pertussis infection. A controversy was

ignited by a study published in 1974 suggesting neurological complications associated with

the pertussis vaccine. A case–control study entitled the National Childhood Encephalopathy

Study (NCES) was conducted in the UK from 1976–1979, that suggested that the risk of

permanent brain injury from pertussis vaccination was extremely low (1 in 300,000).

5. An overwhelmed or healthy immune system?

The number of recommended childhood vaccines has increased exponentially in the last 50

years. A fully immunized child by the age of 2 years will have received 14 different vaccines

and up to 26 injections. Refusal leads to breadown of herd immunity, outbreaks and deaths.

A study in Sabah showed, the highest defaulters was DPT OPV Booster 56.6%, MMR

(43.4%), DPT-Hib/ OPV and Hep B 3rd dose (37.7%), and this is among employed mothers

with big family size are at higher risk.

Conclusion

If controversies and anti-vax movements are uncontrolled, vaccine preventable diseases

may resurge or occur again. Society needs to identify why certain communities/parents

refuse to get vaccination. We also need to deal with vaccine controversies in optimal manner

and cannot just depend on scientific preaching only. More ‘holistic’ response are needed

from religious teachers, preachers, school teachers, neighbor hood watch etc.

Keyword: Vaccines, controversies, autism, defaulters, herd immunity

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SYMPOSIA:

CHILDHOOD OBESITY AND NUTRITION-PSYCHOSOCIAL IMPLICATIONS

MISS JILL KOSS, MS, CCLS*

COOK CHILDREN’S MEDICAL CENTER

FORT WORTH, TEXAS, US

Obesity in children has become a complex public health issue reaching, what some would

call, a worldwide epidemic. In the US, the Center for Disease Control’s most recent figure

says that 17% of children ages 2-19 years are obese, which is approximately 12.7 million

children/youth. (www.cdc.gov) Obesity is also complex because it is an interaction between

physiological and psychological factors, is it nature or nurture, or both? As well, there is still

the question as to whether obesity leads to mental health issues, or mental health issues are

causal for obesity. (De Niet & Naiman, 2011). Research demonstrates no clear answer to

that question.

While there are multiple health/medical complications for children and youth who are obese,

the psychological issues are real and immediate risks for these children. Addressing the

psychosocial aspects of the problem is essential, and weight loss programs will fall short if

they do not include that aspect of care. While much research has been conducted to better

understand the psychosocial concerns for children, who are obese there are conflicting

results in terms of inconsistent findings which provides a challenge in addressing potential

psychosocial and emotional needs. (Young-Hyman, et al, 2006) (Strauss, et al, 2000)

(Griffiths, et al, 2010)

When defining psychosocial/emotional aspects, a list of identified concerns includes

depression, anxiety, lower self-esteem and self-image, bullying and stigmatization, body

image/dissatisfaction, lack of social skills, and decrease in quality of life (De Niet & Naiman,

2011). There is a plethora of research that demonstrates children who are obese are bullied

and stigmatised which predicts children’s negative evaluation of body and self (Cinelli

&O’Dea, 2016). Based on these findings, it’s important to note that not all children who are

obese have the same set of psychological or psychosocial issues, and should not be

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stereotyped into a singular category of concerns. It takes assessing each child uniquely to

determine how best to support their weight loss plan.

Dr. Robert Pretlow (2010) has identified what he calls vicious cycles or circles that kids get

caught up in which prohibits them from moving forward with weight loss. Cycles in which the

situation contributes to the cause of the situation itself, thus making the situation continue

without resolve. These cycles revolve around some of the psychosocial issues already

identified, such as self-esteem and stress; but, they also highlight several other keys areas

that don’t stand out prominently in the literature, such as boredom and willpower. Several

key relationships are uncovered within these cycles, as well. Stress eating is a displacement

activity, and allows for removing the stressor, but not resolving it. Comfort eating provides

emotional numbing in the face of rejection and bullying. Boredom is associated with

feelings of helplessness and manifests in sadness, depression, anxiety and emotionally

detaching from life. Self-esteem is not caring about how one looks because you’ve given up.

Two other aspects that need to be understood are parental issues, as well as healthcare

provider issues. Parents seem to fall into to two categories; they are either very critical and

shame their child who is obese; or, they use food as a love language, and are the ones

providing the food. This enabling is probably the hardest to resolve because it has more to

do with the parent’s emotional needs which supersede the best interest of the child.

Research does demonstrate that parents and families should be included in all weight loss

interventions. Parents need to understand and be on board with a focus on healthy self-care

in order for the child to feel supported not victimized (Cinelli & O’Dea, 2016).

Healthcare professionals may unwittingly be contributors to an unhealthy cycle of being

overweight. ‘So many of these kids are in real pain – emotional, physical, and perhaps even

spiritual. I often wonder about the iatrogenic [provider-caused] effects of their contact with

health-care providers and obesity researchers, who have sub-optimal training or experience

in this area. Such persons may play the blame-game without adequately utilizing a problem-

solving approach to holistic management and support.’ (O’Malley, 2008).

Stopping a cycle takes perseverance, strength and support. In Pretlow’s program, he has

the advantage of thousands of comments, stories, and testimonies from obese children and

youth. In very real terms, they honestly share what has not worked and even made things

worse, to sharing stories of weight loss success. In thinking about interventions which will

help stop a cycle, it’s worth remembering that weight is not a behavior, and therefore is not

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an appropriate target for behavior modification. Interventions that have the strongest

potential to be effective are those that develop coping skills, enhance positive self-esteem,

and build resiliency. They are interventions that do not focus on weight loss, but rather on

positive change and motivation. Research demonstrates that children successfully lose

weight when the focus is on ‘fun’ not weight loss (Watson, et al, 2016). This study also

found that motivation for engaging in the fun could start as extrinsic, but it was most effective

for weight loss when the motivation became intrinsic. Connection with others was an

important part of the fun, finding relatedness with other children who were as equally

engaged in the activity.

As part of any weight loss program, a strategic intervention designed to align with the above-

mentioned focus starts with developing motivation, understanding the reason why the child

wants to lose weight. If there is no internal motivation with a reason for moving forward,

there will be limited success. Once a reason has been identified and owned, the next step is

to make a plan, which includes some of the following as a focus for supporting psychosocial

needs:

Create a support network for accountability

Become aware of what they feel when they seek food

Identify alternatives to eating – activities to participate in

Exercise – make it fun and with friends

Cope with life without using food

Become a helper

There are a multitude of interventions for all age groups, specifically designed to develop

coping skills, enhance natural resiliency, and promote positive self-esteem. Tapping in to

inherent strengths that kids already have plays an essential role in a successful plan.

A harsh reality about children and youth who are obese is that they sit on the sidelines and

avoid things in life because of their weight. It keeps them from fully enjoying life, so they turn

to food for happiness. That shouldn’t be any child’s reality. Healthcare professionals

working with children and youth who are obese will benefit their patients by focusing on

positive motivation, and including interventions which will help them successfully navigate

through weight loss.

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WORKSHOP:

CHILD SAFETY- OUTSIDE AND INSIDE HOSPITALS

*PROFESSOR DATO’ DR. MAHMUD MOHD NOR

*President, Child friendly Healthcare Association of Malaysia

MBBS (Mal) FRCS (Edin) FRCS(Glasgow) FAMM

Professor of Surgery, Universiti Sains Islam Malaysia

Adjunct Professor of Surgery, Universiti Kebangsaan Malaysia

Introduction

To be safe is a universal human right. Competent adults under most circumstances are

expected to be capable of looking after their own safety and the safety of their families and

those under their responsibility to care. Children on the other hand have varying degrees of

competency depending on age to ensure their own safety. Children around the world are

subjected to different types of injuries and risks of injuries but all children rich or poor living in

the developed or under developed world have the right to grow up healthy and safe. It is thus

the responsibility of those caring for children to ensure the safety of children under their care

in these different and varied environment or circumstances. When a child dies, or sustains

serious injuries often leading to long term consequences the lives of families and community

can be severely affected and changed.

Magnitude of the problem and places where injuries occur

Unfortunately, the actual magnitude of the problem is not well documented except for some

developed countries. According to an organisation SAFE KIDS Worldwide based in USA it is

estimated that a million families lose a child to a preventable injury every year around the

world. It is the number one killer in the United States and it is estimated around the world

that a child dies from an unintentional injury every 30 seconds and millions of children are

injured in ways that can affect them for a lifetime. The injuries are sustained at home,

outside the home on roads, in vehicles, schools, playgrounds, child care centres, hospitals

and other places that are sometimes not expected for injuries to occur. Injuries suffered by

children can be truly accidental but often they are due to ignorance or negligence on the part

of those responsible for the safety of the child. Accidental injuries including drowning are the

leading causes of death in children ages 18 and younger. Those who survive with severe

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injuries may be left with varying degrees of disabilities for life. In addition to these cases of

accidental trauma there are also increasing numbers of non-accidental trauma (NAT)

similarly leading to death and disability. Unfortunately, some are deliberately harmed by

those who are supposed to care for them at home. Non-accidental trauma as it is known is

also becoming a problem of increasing concern. In the USA, it is said to be the leading

cause of death for traumatic injury in childhood. There is substantial cost incurred to care for

all these children especially those that require long term care and rehabilitation.

In Malaysia, non-accidental trauma only reached public awareness in 1989 following the

death of a severely abused child. National data are collected by various agencies and it can

be assumed that there are many instances of under reporting. However, there is a trend of

increasing number of cases reported to the Social Welfare Department every year from

1,149 in 1997 to 3,257 in 2010

There are other causes of preventable injuries or harm to children. This can occur in the

health care setting. There are estimates of such harms in hospitals for patients worldwide

especially in the developed countries. It is estimated that in the United Kingdom one in ten

patients will experience some form of harm during their stay in hospital. Medicare USA

estimates 13.5% of its hospitalised patients suffer adverse events. Worldwide it is estimated

that one in ten patients experience preventable harm while in the hospital. The magnitude of

the problem especially in children however is not well documented as a separate entity. This

may be attributed to under reporting.

Child safety in healthcare facilities

Safety can be defined as the avoidance, prevention, detection and amelioration of adverse

outcomes of physical and psychological injuries. Safety is therefore part and parcel of

Quality Healthcare Delivery. Patient safety includes:

i. Freedom from physical danger or risks

ii. Avoiding harm or minimizing harm if unavoidable

iii. Includes psychological harm

iv. Early detection of harm or adverse outcomes

v. Rapid intervention to deal with and ameliorate harm

vi. Supporting staff involved (second victim)

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Potential sources of danger in the healthcare environment

It must be recognised that a health facility like a hospital has an environment that is

potentially dangerous. This is in relation to the design of the physical structures including

building materials used for the walls and floors that are not child friendly. Some other

potential sources of dangers for children in hospitals include:

i. Equipments like lifts, incubators, ventilators

ii. Medical procedures and processes

iii. Transportation facilities and equipments

iv. Special facilities e.g. Operating Theatres, Intensive care units, Special care

nursery and Radiology

v. Playgrounds and playroom toys

Special needs and consideration for children in a health care setting

The World Health Organisation (WHO) has defined health not only as physical health but

linking health to wellbeing, in terms of “physical, mental and social well-being, and not

merely the absence of disease and infirmity”.

The World Health Organisation in a Report of a Commissioned Study stated that

“There is a clear lack of awareness in surprising large number of Hospitals of the special

need not only to cater for children’s technical, medical and nursing needs, but also to

minimise the adverse effects of being separated from their families and exposed to

frightening experience that are all too often magnified by the child’s lack of forewarning”

Therefore, in terms of the health needs of children in hospitals in addition to their physical

well-being and cure of their ailments the psychological effect and trauma of children must be

well managed. Children must be in an environment that also prevents or reduces emotional /

psychological harm which may result in a permanent scar with lifetime consequences.

Physical pain and frightening experiences while in a health care facility must also be

addressed adequately with competence so as to minimise the adverse psychological harm

to the child which may have long term consequences.

The requirements for safety in hospitals

Uppermost in patient safety is the availability of competent health human resources in every

category of staff. Medical and Allied Health personnel at undergraduate and post graduate

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levels must be in accredited programs to ensure their quality and competencies are at the

appropriate level. Personnel caring for children must have the training and skills to

appropriately respond to the needs of children.

Health care facilities must be safe with well-designed infrastructures including buildings, safe

equipment and facilities for treatment.

To ensure continuing improvements in the quality of care there has to be good governance

and systems of healthcare delivery. Managers must instill the culture of patient safety and

continually promoting quality improvements efforts. Health care personnel must be educated

throughout the continuum of education in patient safety to reduce medical errors and

psychological harms

The health care facility must be accredited by an appropriate authority to ensure compliance

to quality standards and criteria. For children, special quality standards must be formulated

and complied.

Authorities established to ensure quality in the delivery of Health care in Malaysia

1. Malaysian Qualification Agency

Peculiar to the Malaysian scenario, by the enactment of the MQA act 2007 programmes of

higher educational institutions (HEI s) leading to professional qualification require that

accreditation be done by or in close collaboration with professional bodies established under

various Acts of Parliament to regulate the profession and ensuring quality of medical

personnel.

2. Malaysian Medical Council

The Malaysian Medical Council established under the Medical Act 1971 performs a licensing

and regulatory role. It institutes disciplinary action for breaching code of professional conduct

or failure to provide and maintain good standard of care to patients. It also develops

guidelines on good medical practice.

3. Malaysian Society for Quality in Health

The Malaysian Society of Quality in Health established in 1997 accredits hospital including

compliance to safety standards. At the moment accreditation of hospitals is voluntary and is

not a requirement under the law. This is the negative aspect of the current situation as this

has not enabled all hospitals to be compelled to comply with the quality standards and to

ensure processes for patient safety are put in place while they undergo treatment in the

medical facilities.

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4. Child friendly Health Care Association

In 2001 The Child friendly Healthcare Association of Malaysia was established to address to

the special needs of children in a healthcare setting. The child friendly health care facility

initiatives seek to develop a child- sensitive approach that recognises the special psycho-

social, developmental and physical need of the child. Twelve standards with criteria for

compliance were developed. Although the emphasis was on the psychosocial aspect of

patient safety, physical safety was also encompassed in the standards. The standards were

submitted to the Ministry of Health to be implemented in the Ministry of Health hospitals and

to the Malaysian Society for Quality in Health to include them in their quality standards.

In addition to complying with the Child friendly health care standards it was hoped that in the

near future all hospitals and healthcare facilities will be required to undergo compulsory

accreditation to improve the quality of care so that more lives can be saved from accidental

injuries and medical errors.

5. Malaysian Patient Safety Council

This was established in 2003 following a Cabinet directive to advise the Minister of Health on

situation of preventable adverse events and measures to overcome them. The council is

also responsible to promote systemic improvements in safety and quality of healthcare in

Malaysia. Another important function of the council is to devise strategies to improve safety

and quality of care and publish reports on adverse incidents and patient safety. These

incidents are to be used for educational purposes to avoid similar incidents in future.

What needs to be done to improve child safety?

1. There must be greater effort taken to establish mechanisms to obtain reliable data to be

used to create greater awareness among Malaysians regarding the magnitude and

seriousness of the problem of preventable injuries and harm among Malaysian children.

2. More efforts must be taken by nongovernmental organisations and civil society to

disseminate information to the public regarding child safety and to undertake programmes to

educate the public on the importance of child safety.

3. Engaging corporations, foundations, governments for funding to support educational

programmes to families and general public to create safer environments at home and places

frequented by children.

4. Researching into the types of injuries causing the most harm in the community and

recommends appropriate interventional measures to prevent them from happening.

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5. Advocating appropriate laws and regulations for better child safety.

Conclusion

Preventable injuries either accidental or non-accidental are a major cause of death and

disabilities in children all over the world. A more concerted effort must be undertaken in view

of its global epidemic proportion. Families and the public in general are ignorant or do not

have access to information or resources they need to keep their children free from all kinds

of injuries that may result in tragedies.

International collaboration is required to address this very important malady which is entirely

preventable with the right approach and the appropriate resources made available to combat

this global epidemic.

References

National Action Plan for Child Injury Prevention, Apr 30 2016, Injury is the # 1 killer of

children and teens in USA in 2009, Centers for Disease Control and Prevention.

10 leading causes of Injury Deaths. Unintentional Injury Deaths USA 2010, Centres for

Disease Control and Prevention.

Why Injury Prevention Matters, Safe Kids Worldwide.

C.Henry Kempe, M.D et.al The Battered- Child Syndrome, JAMA 1962;181(1);17-24.

Asvall JE. Forward to “Care of Children in Hospital” by Else Stenbak. Report of the WHO

Regional Office for Europe commissioned study into care of children in selected hospitals in

9 European Countries. WHO 1986 ISBN 92 890 10339.

UN Convention on the Rights of the Child 1989.

Total Cases of Child Abuse and Neglect Reported to Department of Social Welfare 1997-

2010. Department of Social Welfare, 2011.

Guidelines for Child Friendly Healthcare, Malaysian Child Friendly Health Care Association.

Malaysian Qualification Agency Act 2007. Malaysian Medical Council, Medical Act 1971.

Malaysian Hospital Accreditation Programme, Malaysian Society for Quality in Health.

Malaysian Patient Safety Council.

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WORKSHOP:

CHILD AND FAMILY FRIENDLY HEALTHCARE

MISS JILL KOSS MS, CCLS*

COOK CHILDREN’S MEDICAL CENTER

FORT WORTH, TEXAS, US

“We owe it to the future not to harm our children in their hearts and minds while we cure their

diseases and heal their broken bones.”

A Quiet Revolution

Starting several decades ago, countries like the United States, the United Kingdom and

others began to gradually address some of the psychosocial and emotional needs of

children, as well as the respect and partnership needs of their families in the hospital setting.

This initiation of child and family-centered healthcare was greatly impacted by the 1989

United Nations Convention on the Rights of the Child (UN-CRC), as that document

established the base premise that, in all situations, the best interests of the child should be a

primary consideration (art.3). These standards set a clear path for the protection of

children’s rights in relation to health care, education and legal, civil and social services,

fifteen of which are directly related to health care (www.ohchr.org). Multiple initiatives across

the globe continue to be created to address the psychosocial, psychological, social and

developmental needs of children based on these standards.

Currently there are several international organizations specifically promoting child and family

friendly health care in response to the UN-CRC standards. The European Association for

Children in Hospitals (EACH) is the umbrella organization for member associations involved

in the welfare of all children before, during or after a hospital stay. The member associations

of EACH, of which there are 15, aim to have the principles of the EACH Charter incorporated

in health laws, regulations and guidelines in each European country. (www.each-for-sick-

children.org). The Council of Europe has established Guidelines on Child-friendly Health

Care as an integrated approach to place children’s rights, needs and resources at the center

of all health care activities. (www.COE.INT).

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The United Kingdom created the Child Friendly Health Care Initiative in response to the

UNCRC to address the physical, psychological, and emotional needs of children and their

families. “While there have been improvements in some clinical treatments, a visit to

hospital or clinic is still a frightening and traumatic experience for many children and their

families across the world.” (www.childfriendlyhealthcare.org). The focus for this initiative is

three-fold:

Reducing fear, anxiety and suffering in children and families

Improving their overall experience of health care

Improving mortality and morbidity

Both of these organizations follow 12 set standards based on the UN-CRC:

1. Children will be admitted to and kept in an in-patient health facility only when this is

in their best interests.

2. The highest attainable (best possible) level of care, evidence based when possible, is

provided for them and for pregnant women.

3. The environment in the health facility is secure, safe and clean.

4. The resources and expertise are available to provide separate, age-appropriate care

in partnership with parents in child friendly surroundings.

5. They and their parents/carers are kept consistently and fully informed and involved in

all decisions affecting their care.

6. They have equal access to health services and are approached without

discrimination as individuals, with their own and developmentally appropriate rights to

privacy, dignity, respect and confidentiality.

7. Their physical and psychological pain and discomfort is assessed and controlled.

8. When they are severely ill, undergoing surgery, or have been given systemic

analgesia and/or sedation, trained health workers and the necessary resources are

available to provide appropriate critical and emergency care.

9. They are able to play and learn when attending a health facility.

10. They are protected from child abuse by appropriate and clearly defined systems, and

are supported by health workers familiar with its signs and symptoms.

11. Their health and the health of pregnant women is monitored and promoted.

12. Breastfeeding is supported and optimal nourishment is provided by the promotion

and practice of globally acceptable feeding programmes.

How then are we to understand the application of these standards into the routine practices

of healthcare institutions? It takes understanding the impact of the environment on children

and families, identifying their unique needs, and providing interventions and services that

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begin to meet those needs. If healthcare professionals and institutions are to be child and

family friendly, or centered, practice and policy must be ready to meet children and families

where they are.

Children’s Understanding and Experience of Healthcare:

A Developmental Perspective

The impact of injury, illness and hospitalization may be best understood by looking through

the lens of developmental theory. Drawing from the work of Erik Erikson (1963), theorist for

Psychosocial Development; Piaget (1962) whose theory focuses on Cognitive Development;

Bowlby (1973), identified with Attachment Theory; and Bandura (1977), theorist on Social

Learning, we begin to see the impact of the healthcare environment on development, learn

to identify the main stressors and fears experienced, and understand the behavioral

responses to those stressors. There are strategies specific for each group that have been

identified that will improve a child’s overall experience of healthcare. It should be noted that

when talking about development, there are no specific age limits, but broad age ranges.

Children may respond typically for a particular stage of development, but they can also

regress to an earlier stage of development when faced with stressful situations that are

overwhelming.

Infants

The goal for infants (ages 0 – 12 months) is the development of a relationship where basic

needs are met and security is given. The psychosocial/emotional stage is about learning to

trust their environment versus mistrusting. The hospital setting can be very challenging for

infants to be successful in the developmental stage. Stressors for infants in the hospital are

separation from primary caregiver, change in routine for eating and sleeping, lack of

developmental stimulation, pain, and parent anxiety to name a few. The impact of these

stressors can lead to responses such as being difficult to console, inconsistent use of self-

soothing behaviors, decrease in appetite, change in sleep patterns, crying, and disinterest in

environment. Strategies which promote better coping with stressors are parent presence,

adequate pain management, sensory stimulation, and consistency in daily routine.

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Toddlers

The concept of autonomy versus shame and doubt in toddlers (ages 1-3 years) focuses on

developing a sense of independence and being able to do things for themselves while not

being shamed when trying new skills. In the hospital setting, toddlers can be very

challenging because of this growing sense of autonomy with little ability to self-control.

Stressors can then be loss of control and mobility, stranger anxiety, separation from primary

caregiver, pain, and inability to cope with overwhelming feelings. Behavioral responses to

these stressors are often being clingy and whiney, physically acting out and actively

resisting, and regression. Developmental strategies which can be utilised with this age

group are allowing for choices whenever possible, encourage parental presence, give

opportunities for play in a safe environment, and promote non-pharmacological pain

management.

Preschool/Young School Age

The developmental challenge for preschool/young school age (4-6 years) comes with an

increased ability for initiative to start new things independently and make their own choices,

but have the capacity to worry about doing it right. Challenges for the hospital setting relate

to a preschooler believing they are sick or in the hospital because they are being punished,

as their egocentrism has them at the center of all that happens to them. Main stress points

relate to loss of independence and control, as well as separation from primary caregiver.

Responses related to these stressors can be regressive behaviors, aggression and acting

out, becoming overly dependent on primary caregivers, and not eating or sleeping well.

Strategies which can promote normalisation of the environment are clarifying

misconceptions, setting limits, including them in their own care, providing safe spaces and

play, and encouraging them to express their feelings.

School Age

School age children (ages 7 – 12 years) are at the stage of being industrious while still

having feelings of inferiority. They have the capacity to understand most medical diagnoses

and treatments, can follow plans of care, and be responsible for much of their own care

while in the hospital. The stressors that can accompany this age group are separation from

peers and family, not fitting in and looking different, pain, and lack of structure, as they are

used to being in a school setting. The responses most likely to these stressors are

regressive behaviors, acting out, decrease in self-esteem, and either constantly asking

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questions, or never asking questions. The strategies most beneficial for decreasing stress

are to include them in decision making, provide developmentally-appropriate information,

encourage questions, provide structure through limit setting, encourage participation in

group activities, and to allow them to participate in their own care.

Adolescence

Adolescents (13 – 18 years) are not quite young adults even though they would often like to

consider themselves as such. They are still in the developmental stage of figuring out who

they are, establishing their identity, while in the midst of so many related pressures – family,

peers, school, etc. They have the capacity to understand diagnoses, treatments, and

outcomes, and should play a major role in making decisions about their medical care. The

healthcare experience can be very stressful for this age group as they are separated from

their peers, faced with body image issues, decrease in self-esteem, loss of control and

privacy; and, they often respond to these stressors by either acting out or withdrawing and

becoming passive. Strategies that will help adolescents cope with their illness experience

are to involve them in decision making, encourage self-advocacy and self-care, provide

opportunities for peer interactions, allow for privacy, and if possible, provide same sex care

provider.

Reducing psychological trauma

While there are specific nuances to each age grouping, there are core factors which cross all

developmental stages and have the potential to cause psychological trauma to children

experiencing illness and injury. These are:

Separation from primary caregiver and home

Painful or frightening procedures

Misconceptions around diagnosis and treatment, lack of information

Loss of control, and feelings of helplessness

Emotional distress

Physical restraints

There are also core interventions that decrease the influence of these factors, and support

children and families while in the healthcare environment.

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Play

‘Play is the child’s symbolic language of self-expression, and for children to ‘play out’ their

experiences and feelings is the most self-healing process in which children can engage.’

(Erik Erikson, 1940) Play is how children experience the world. It is universal, and is critical

to human development as an opportunity to communicate feelings, problem solve, try on

new roles, make sense of experiences, and gain mastery. In the hospital setting, play has

the potential to become a healing modality through which growth and development are

fostered and promoted (Child Life Council, 2013). Play for hospitalised children focuses on

the process of mastering critical events such as hospitalisation and medical procedures.

Defining this as Therapeutic play, it refers to activities that are developmentally supportive

and facilitate the emotional well-being of the child. Empirical evidence supports the

effectiveness of therapeutic play in reducing psychological and physiological stress in

hospitalized children. (www.childlife.org/files/EBPPlayStatement-Complete.pdf). Medical

Play is another technique that allows for the expression of feelings related to hospital

experiences, while at the same time providing opportunities for understanding and mastery

of those experiences. Role reversal and being in control during medical play are powerful

tools for coping with helplessness, and building resiliency.

Coping

There are many stressors in the healthcare environment that can tax a child’s ability to cope.

Coping in this setting is viewed as ‘cognitive and behavioral efforts to manage specific

external and/or internal demands that … exceed the resources of the person’ (Lazarus &

Folkman, 1984). Healthcare professionals have the ability to affect a child’s coping process

through identification of the stressful event or stimulus, and assisting in minimizing that

stress through the development of coping strategies. When children learn to master

experiences, which are unfamiliar, frightening, or potentially painful, they may become more

complaint with healthcare treatment, and even get well quicker. So, whether the stressor is

a needle stick poke, separation from a parent, not being able to eat, having to lie still for an

x-ray, children can learn to cope with the situation. Specific strategies can be separated into

three categories – sensory, cognitive and behavioral – and include breathing and relaxation

exercises, distraction or alternate focus, positioning for comfort, sucking, music, rocking,

desensitization, and guided imagery.

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Pain

Fear of needles is one of the greatest fears held by children in the hospital setting. In a

study of 1,024 children, Taddio et al (2012), found 63% reported a fear of needles and the

associated pain of needlesticks. While pain myths have largely been dispelled through

research (Collier, 1997) there still seems to be some question as to whether it is more

distressing for a child to be restrained during a procedure rather than any the pain being felt.

Being restrained is what leads to psychological trauma for children, so every effort should be

made to prevent children being held down during medical procedures (Bray, 2016).

Research also shows that for each exposure to procedural pain without effective pain

management, children demonstrate increased pain and anxiety with subsequent exposures

(Versloot, 2008). Children across all ages see themselves as an active agent in managing

their own pain responses, and feel most successful when they cope with pain on their own

(Franck, 2008).

Preparation

To psychologically prepare a child for a procedure or surgery, gives them the opportunity to

understand what to expect, create a coping plan, and successfully master any related

stressors. Goals for preparing a child for a procedure are to reduce fear and anxiety, and

enhance coping and compliance with medical care. The benefits of preparation are that it

clears up misconceptions, allows children to cooperate because they understand what is

happening, as well as what their role is in their own care. It also goes a long way in building

trust in their care providers which has huge benefit for future procedures or interventions.

Preparation is a process, not an event, and there are sequential steps to preparing children

and families which includes making sure children know what they will feel, see, hear, and

smell. Using either play or real medical equipment in a preparation session is dependent on

the age of the child, as well, many other tools have been developed to aid in that

preparation, such as teaching dolls, and picture or photo books.

Communication

Healthcare has its own language, and it’s one that healthcare professionals understand, but

children and families do not. What does it mean to child to have their blood drawn, or to go

to Cat scan? Do they understand what we mean when we say we are going to put an IV in

their hand? These are words and phrases that are foreign to most children, or out of

context, and can cause distress because of the lack of understanding. In describing pain,

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there are hard words, such as hurt or burn, versus soft words, such as uncomfortable or

tight. Using softer words has the capacity to lessen a perceived threat, and helping a child

cope more successfully (Gaynard, et al, 1998). Providing explanation of words or phrases is

also important, such as a catheter is a small flexible tube, or taking your blood pressure

means “I’m measuring how fast your blood is moving through your body”. Taking care to

choose words that don’t cause more confusion, and allow for a greater understanding of

information helps for greater coping and compliance.

Environment

Environment can be both physical as well as emotional, but the common factor is about

safety. A child friendly physical environment is welcoming and inviting, and sets the tone

that this is a safe place for them. Having safe places includes have a playroom that allows

for play and development opportunities in which no medical procedures happen is important

for promoting positive coping. It is also best practice to not conduct painful medical

procedures while a child is in their own hospital bed. Moving to a treatment room for

needlestick, or any other invasive procedures allows the child’s bed to remain a safe space.

Family-Centered Care

Family involvement in the care of their child in the hospital is essential, with best practice

being a collaborative model that considers the expertise of both medical professionals and

the patient and family when making decision on medical care. Family-centered care is

based on four primary principles 1) respect and dignity, 2) information sharing, 3)

involvement in care, and 4) collaboration (www.ipfcc.org). It recognizes that parents know

their child best, and will ultimately be responsible for their care at home, so should be

integral part of the hospital experience. Working with families rather than to or for families in

providing services is at the core of being patient and family-centered, and creates a team

approach with the child’s best interest at the center of care. If a parent is non-anxious,

engaged in the care of their child, and working as a team with healthcare providers, their

child has a much greater chance of also being less anxious, and better able to cope with

their experiences.

To revisit the need to minimize psychological trauma for children in the healthcare

environment, and in keeping with standards created to make the healthcare environment a

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place of healing for the whole child, it is becoming best practice for healthcare professionals

to begin the examination of their current practice, and move in a direction that transforms

care for the patients and families that reduces fear, anxiety and suffering, and improves their

overall experience of care.

REFERENCES

Bandura, Albert (1977) Social Learning Theory. Englewood Cliffs, NJ: Prentice-Hall

Bowlby, John (1982) Attachment and loss volume I: Attachment. London: Hogarth Press

Bray, L., B. Carter, J. Snodin (2016). Holding Children for Clinical Procedures: Perseverance

in Spite of or Persevering to be Child-Centered. Research in Nursing and Health, 39(1),

February, pp 30-41.

Child Friendly Healthcare Initiative www.childfriendlyhealthcare.org

Child Life Council (2002) Official Documents of the Child Life Council www.childlife.org

Child Life Council (2008), Evidence Based Play Statement, Therapeutic Play in Pediatric

Health Care: The Essence of Child Life Practice

Collier, J. and H. Pattison (1997) Attitudes to children's pain: exploding the 'pain myth'.

Paediatric Nursing, 9(10), December, pp 15-18

Council of Europe www.COE.int

Erikson, Erik (1963) Children and Society. New York: Norton

European Association for Children in Hospitals www.each-for-sick-children.org

Franck, L.S., A. Sheikh, K. Oulton (2008). What helps when it hurts: children's views on pain

relief, Child: care, health, and development, 34(4), July, pp 430-438

Gaynard, L., J. Wolfer, J. Goldberger, R. Thompson, L. Redburn, L. Laidley (1998)

Psychosocial care of children in hospitals: a clinical practice manual from the ACCH child life

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