Shaken Baby Syndrome

A large number of child deaths are reported in South Africa each year. A lot of deaths relate to neglect, abuse or murder. Despite this, there's a knowledge gap in relation to understanding the issue....

Amniotic fluid problems

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Choosing a pre-school

Becoming a parent is a momentous; life-changing event filled with hopes, expectations and naturally some fears. Parents often learn and grow alongside their children, as they face the challenges of pa...

Newborn reflexes

Although newborn babies are physically helpless and vulnerable at birth, they have a number of amazing innate abilities or reflexes. Reflexes are involuntary movements or actions, designed to protect ...

Mastitis

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Pelvic floor exercises

Although your new baby will probably bring you immense emotional satisfaction, physically you may feel uncomfortable and strange in your own skin. After 9 months of pregnancy and hormonal changes, you...

Colic

Babies cry because they need to communicate something and most parents, especially new moms, find it distressing to see or hear an unhappy baby. In time, you will learn to recognize the various causes...

Antenatal Classes

Antenatal classes are informative sessions provided to prepare expecting parents for the birth of their child and the early days of being a parent.Most antenatal classes are run by Midwives and occasi...

Strap-in-the-Future

The Decade of Action for Road Safety 2011-2020 was launched on the 11 May 2011. It is a global declaration of war against road crashes and fatalities. According to Mr Sibusiso Ndebele, MP Minister of ...

  • Shaken Baby Syndrome

    Tuesday, 21 July 2015 16:28
  • Amniotic fluid problems

    Thursday, 14 May 2015 12:54
  • Choosing a pre-school

    Friday, 10 April 2015 17:50
  • Newborn reflexes

    Tuesday, 03 March 2015 15:49
  • Mastitis

    Tuesday, 03 March 2015 15:41
  • Pelvic floor exercises

    Wednesday, 11 February 2015 17:20
  • Colic

    Wednesday, 11 February 2015 17:11
  • Antenatal Classes

    Monday, 03 June 2013 09:34
  • Strap-in-the-Future

    Thursday, 30 June 2011 13:52

Chronically ill Children

chronically illAll children experience health problems as they grow and develop, however for most children these problems are mild; they come and go, do not affect daily activities or functioning, and do not require families to change their lifestyles. A condition is regarded as chronic when it persists for more than 3 months, affects a child’s normal activities, requires frequent hospitalizations and/or home care, extensive medical interventions, and necessitates familial changes to accommodate the child’s illness. Children with chronic illness or disease may be ill or well at any given time, but they are always living with their condition. Some of the most common chronic conditions include asthma, spina bifida, diabetes, allergies, cancer, AIDS, cerebral palsy, congenital heart problems, sickle cell anaemia, epilepsy and cystic fibrosis. 
Although these conditions are different, chronically ill children, their families and friends face unique challenges.  Unlike a child with a temporary illness, children with chronic conditions have to cope knowing that their problem is permanent, incurable and may get worse over time. How children adjust to and cope with their illness depends on their age, stage of development, understanding of their illness, the specific illness, their family, support system and resources, and illness management. With chronological age and experience, children may develop different coping strategies and a deeper understanding of their condition. However, living with chronic illness often means living with fear, pain, loneliness and feelings of being “different”. Children may feel angry that they are sick and struggle to fit in and be “normal”. 
Babies and toddlers
Age and stage of development have a significant impact on how children cope with a chronic diagnosis. Babies and toddlers have little or no understanding of their illness. Developmentally very young children are beginning to explore their worlds and develop a sense of trust and security. Painful medical procedures and separation from parents are often experienced as scary, challenging and threatening to their sense of safety and wellbeing. Parents can minimize their baby’s pain and emotional discomfort by holding, soothing and staying with their child as much as possible. 
Preschool children
The primary developmental challenge experienced by preschool children is the milestone of independence. Children in this age group understand what it means to get sick but fail to understand the cause and effect nature of illness. For example, children may believe that vomiting makes them sick, not the other way round. Chronic illness and frequent hospitalization may affect a child’s growing independence and sense of control. They may feel angry with parents and doctors for not being able to cure the disease. As a result, they may challenge parental boundaries and resist treatment. Offer your child choices with regards to flexible elements of treatment. For example: “Do you want to take the pink medicine first or the purple one?” or “Would you like to sit on my lap during your blood test or would you prefer to sit in the chair and I will hold your hand?” Be firm with regard to non-negotiable, such as taking medication according to schedule. No child, if offered a choice, will agree to take medication.
Early school-aged children
Early school-aged children are developing a sense of mastery over their environment. Although children in this age group understand illness, their reasons for being sick are often illogical and may involve “magical thinking”. For example, “It is my fault I am sick because I hit my brother or because I had nasty thoughts”.  Chronically ill children also begin to realize that they are “different” from their peers. Parents face the challenge of reassuring their child that the illness is not their fault. Increase your child’s confidence and sense of control by allowing them to help with the management of their illness. Helping them develop resilience is an effective coping mechanism.   
Helping young children cope with stress
Even very young children experience stress and it is important for parents to recognize and help them deal with it. Excessive unrelieved stress can lead to behavioural problems, learning difficulties, an inability to get along with others, and a susceptibility to illness due to a weakened immune system.  A serious illness or chronic health problem is classified as long-term stress. We cannot always protect our children or prevent them from experiencing certain kinds of stress, nor can we make a stressed child feel better immediately. Parents can help their child deal with stress by providing appropriate help and support, practicing stress reduction techniques and coping strategies, and building valuable life skills that can be drawn on in times of difficulty. Parents can make stress more manageable by: 
Helping their child feel connected to parents and other caregivers. Secure, dependable relationships help children develop trust. They are also more likely to listen to a supportive adult. 
Providing a safe, stable and happy home environment. This includes a healthy, balanced lifestyle with good food, opportunities for physical play and relaxation, and predictable daily routines.  
Comforting their child when they are overstressed. Physical comfort through touch is a powerful stress reliever. Hold your child’s hand or pull them close while watching TV. If your child needs space, they will let you know. Show your child you love them with words, hugs and kisses.
Address your child’s medical condition directly rather than denying or avoiding the situation. Being proactive and focusing on the problem reduces anxiety levels and decreases the risk of depression. Using active coping strategies and developing a plan of action, are also associated with greater inner peace and life satisfaction. 
During times of calm, encourage your child to discuss their worries and fears. Listen attentively, without interruptions. This shows your child that you care about and understand how they feel. Preschoolers are not always able to articulate their emotions. Keep conversations short, comfort your child, and then distract them with a new activity. You may be surprised by which elements of the illness are the most difficult. For example, children with cancer reported feeling more disturbed about not being able to do what they used to rather than the uncertainty of their prognosis.   
Teach older children to recognize, identify and talk about their emotions. Talking about feelings stimulates the thinking part of the brain (prefrontal cortex) and makes the “acting out” part of the brain less active. 
Communicate openly and honestly. If your child overhears a doctor and doesn’t know what is happening, they may imagine the worst. Provide age appropriate information about the disease, the prognosis, and the importance of complying with treatment to control symptoms and prevent advancements in the illness. Encourage your child to learn as much about their illness as possible.  This is emotionally healthy and recommended. Accurate knowledge is empowering. Encourage your child to ask questions and voice their concerns. 
Teach your child how to listen to their bodies (for example, their muscles, tummies, and heads). Explain that there is a connection between their bodies and emotions, such as anger, fear and worry. For example, if their heart is beating fast, they may be scared. 
Help your child find ways to reduce stress by becoming involved in activities they enjoy, such as playing with a favourite toy, cuddling an attachment object, stomping on the rug, banging on a tin, or reading a book. For children under the age of 3, water play can be particularly soothing. When your child is able, allow time for unstructured play. 
Model effective stress reduction techniques. For example, when you are feeling overstressed, stop and say, “I am feeling stressed. I need to take a few deep breaths to calm down”. Teach your child to inhale through their nose and pretend they are blowing up a balloon in their tummy, and then exhaling through their mouth. If your child is in hospital receiving treatment, blowing bubbles has been shown to increase deep breathing and reduce stress.
Help your child develop resilience
Resilience can be defined as the latent capacity to resist stress, cope with adverse conditions, and recover from severe difficulties. Resilience or the ability to “bounce back” can develop at any time during the life cycle and is a valuable tool for dealing with difficulties. Parents can promote resilience in chronically ill children by teaching them emotional and practical skills that build self-esteem and competence. Resilience is able to emerge if the child’s capacity to adapt to adversity is challenged and the child is able to draw on their strengths or assets.  Parents can foster resilience in several ways, such as:
Providing opportunities for bonding and early attachment.
Creating warmth, support and opportunities for close relationships in the home.  
Providing close, continuous and predictable contact.
Providing care within the context of a supportive community. Children facing difficulties need multiple sources of support in order to survive.  Communicate what kind of help and support your family needs.  
Creating affiliations with social, cultural and faith communities. Supportive communities protect children from and enable them to overcome adversity.
Recognizing and rewarding their child’s accomplishments in response to difficult or stressful situations. 
Retaining and communicating a sense of hope and positivity. Children can learn to respond to adversity in positive ways through role play, games or discussions.
Helping their child develop contact with others who have successfully adapted to living with chronic illness.   
Showing an interest in their child’s welfare, learning and education. Having special adult interest, has been associated with less absenteeism and improved school performance.  
Encouraging siblings to help the vulnerable child in joint play and creative activities. This is beneficial for both children and family cohesion. Siblings generally experience an increase in confidence and disabled or chronically ill children, show improvements in various ways such as skills mastery.
Spend one-on-one time with your other children, so that they know they are important too. Help them find ways to care for their brother or sister, as an integral part of the family team. 
Recognizing the importance of and encouraging peer relationships. Chronically ill children can feel “left out”, isolated and “different”.  Parents can arrange play dates, social activities or extra-murals for their child, in accordance with their particular needs and limitations. Older children can benefit from organizing or becoming involved in circles of friends or buddy systems. Help your child practice a script that they can use to explain their condition to their classmates or people who stare.  
Respond not only to your child’s illness, but to your child’s strengths. It is natural to feel protective but important to encourage socialization, school attendance and involvement in activities outside the home. Similarly, don’t be overly permissive because your child is ill. Maintain boundaries and structure. Children may become fearful if you break your own rules. 
It is devastating when your child is diagnosed with a chronic illness and natural to feel scared, sad and angry. Take each day as it comes and be gentle on you – it is normal to grieve and experience a roller coaster of emotions. Don’t feel guilty about taking time out for your own mental health. In the long-term it will benefit both you and your child.  As you navigate the difficulties of your child being diagnosed a chronic condition, psychologists can help your family come to terms with and manage the disease.  
 
References:
 
Bordeux, T.L. American Psychological Association. When your child is diagnosed with a chronic illness: How to cope. https://www.apa.org/helpcenter/chronic-illness-child.aspx.  Updated August 2013. Accessed 23 March, 2014. 
Boyse K., Boujaoude RN., & Laundy J. Children with chronic conditions. University of Michigan Health System. http://www.med.umich.edu/yourchild/topics/chronic.htm. Updated November 2012. Accessed March 21, 2014.
Children and young people: Rights to action research briefings. Promoting resilience in child care practice and policy. www.rip.org.uk/publications/welsh.asp. Published 2009. Accessed March 23, 2014.  
Psychology Association of Canada. KHST Booklet for Parents: coping with stress. Kids Have Stress too! Ideas, Tips and Strategies for Parents of Preschool Children. www.psychologyassociation.org.  Accessed March 23, 2014. 
The American Academy of Child and Adolescent Psychiatry. Facts for Families No. 19: The child with a long-term illness.  http://www.aacap.org. Published December 2011. Accessed March 23, 2014.