The Importance of Psychological Care for Children with Cancer

When a child is diagnosed with cancer, the diagnosis will forever change the lives of the whole family. Not only do they have to deal with the painful physical aspects of the disease, but also with a slew of foreign medical terms, treatment protocols, fear and anxiety.

Childhood cancer is as much a psychological disease as it is a physical one, and Children with Cancer and their Families need help managing the day-to-day isolation, pain, treatment challenges, and consequences of it all on their daily life.

It is therefore of paramount importance that Children with Cancer and their families get the help they need for the non-medical aspects of the disease.

Psychosocial Oncology, a relatively new discipline, is a multidisciplinary application of the behavioural and social sciences, and pediatric psychosocial oncology is an emerging subspecialty within the domain of psychosocial oncology.

Social and Emotional Issues During and After Treatment of Cancer in Children.

Psychosocial Issues in Paediatric Oncology have long been a subject for research; the type of problems experienced depend on the child’s age when diagnosed and the extent and type of treatment.  Some Little Fighters may have problems with normal functioning and school work, and this can get in the way of relationships, school, developmental growth, and various other aspects of life.

Children Fighting Cancer may also:

  • Show some anxiety or other emotional reactions before and after treatments;
  • Be overly worried, depressed, or angry;
  • Have trouble dealing with physical changes that can result from the treatment;
  • Worries about the cancer returning or new health problems developing;
  • Feelings of resentment for having had cancer or having to go through treatment when others do not;
  • Have concerns about being treated differently or discriminated against (by friends, classmates, coworkers, employers, etc.); and
  • Have concerns about dating, marrying, and having a family later in life

In a study entitled Psychosocial Functioning in Pediatric Cancer, it was found that:

Advancing medical treatment has certainly affected the focus of pediatric psycho-oncology research. Psychosocial research has in turn influenced the emotional environment in which hospitalized and home-based children with cancer experience their disease.

Changes in attitude regarding hospital practice and communication with children were influenced by studies whose innovative research designs were based on astute observation of the behavior of children on cancer wards. These studies showed that children were not deceived by the avoidance of discussion of their diseases or by false reassurance about their prognosis.

kids cant fight cancer aloneWe learned that children understood much more than was originally thought and that they usually knew the seriousness of their condition as well as its name (Spinetta, 1974; Waechter, 1968). The adults’ silence about the central topic—the child’s imminent death—left the children to cope with their fears alone.

The ultimate outcome of dissemination of findings from these studies was that open communication about cancer began to be emphasized by pediatric oncology health care professionals who talked directly to children about their illnesses and who strongly encouraged parents to talk more openly with their children.

The change toward open communication also helped fuel the inclusion of mental health professionals on treatment teams for children with cancer. If there was to be open communication about the difficult emotions of life-threatening illness or imminent death, then it was advisable to have psychological experts close at hand to help families explore and cope with these intimate and challenging issues. The presence of psychologists, social workers, and psychiatrists on pediatric cancer services in turn fostered an awareness of the behavioral challenges faced by children with cancer—notably, how to deal with the isolation of hospitalization and the pain and suffering associated with treatment procedures. The presence of mental health staff also fostered an awareness of cancer’s impact on the whole family, including parents and siblings as well as the child with cancer.

One set of parents that can attest to the strain put on everyone by cancer, and who lost their son Mattie at age 7 to a rare form of bone cancer, is Peter and Vicki Brown.

Like most other parents of a Child with Cancer, they virtually lived in a hospital for months on end as they watched Mattie grow anxious and depressed. He dreaded the sight of another phalanx of white-coated doctors marching down the hall to deliver what invariably was bad news and feared CT scans.

His parents, frantically trying to save him, struggled with sleepless nights, mounting financial worries and various emotional traumas throughout his illness, and then an overwhelming silence that engulfed their Foggy Bottom home when he died at age 7 in 2009.

As they watched their young son battle his cancer, they often felt lost and alone. “It was just a horrific experience,” Peter Brown said. “And we recognized that the value of psychological, emotional, social support was just as important, if not more important, than the medical treatment.

The couple founded the Mattie Miracle Cancer Foundation in honour of their Little Fighter, to focus on improving overall care for childhood cancers.

It is thanks mainly to their hard work over the past few years that the end of December 2015 saw the publication of the first National Standards for the “Psychosocial” Care of Children with Cancer and their Families.

The standards, published in a special issue of the journal Pediatric Blood and Cancer, are a road map for health-care providers from the moment of diagnosis into survivorship or bereavement. The Browns hope the rigorously researched standards will mark the first step toward putting in place a consistent level of care around the country, from massive cancer treatment centers to small-town community hospitals.

One recommendation is that young people with cancer and their families — including siblings — receive regular assessments of their psychological needs, not only when a crisis occurs.

Another urges officials to be aware of the risk of financial hardship, and to help families find ways to address those concerns before the situation becomes dire.

The standards say families should be educated early on about palliative care and its role in helping to “reduce suffering throughout the disease process.” And they say children with cancer should receive “developmentally appropriate” information to prepare them for the treatments and procedures they will undergo

We can’t undo history. But what we can do is try to help those who are going through this, or are going to go through this,” Peter says. “This gives us an outlet to do some good. I wish somebody 20 or 30 years ago had done this. It wouldn’t have necessarily changed the outcome for Mattie, but it might have made it less worse to live through.”

While most hospitals now have psychologists, psychiatrists, social workers and “child life” specialists who help young cancer patients cope with the fear and unfamiliarity of the medical world, what has always been missing is uniform, peer-reviewed standards for the psychological and emotional side of pediatric cancer, as there are for medical care.

“There are beautiful, well-written summaries and guidelines out there, but none of them were based [entirely] on evidence. Nobody had really done this kind of rigorous evaluation of the evidence out there for psychosocial care,” said Mary Jo Kupst, emerita professor of pediatrics at the Medical College of Wisconsin and an expert in pediatric psychology. Kupst is one of the key authors of the new standards.

We can’t undo history. But what we can do is try to help those who are going through this, or are going to go through this,” Peter says. “This gives us an outlet to do some good. I wish somebody 20 or 30 years ago had done this. It wouldn’t have necessarily changed the outcome for Mattie, but it might have made it less worse to live through.”

Lori Wiener, head of the Support and Research Program at the National Cancer Institute and a leader in the national standards process, said that some experts might find the standards more obvious than revelatory. “But we needed to set the bar low,” she said. “We had to make it broadly implementable and sufficiently general. I’d rather everyone get the minimum than nothing at all.

This is a great step towards dealing with the traumatic events and psychosocial problems that most Little Fighters face, and we can only hope that the same will be done in South Africa soon.

We at the Little Fighters Cancer Trust know just how important it is that our Little Fighters get ALL the help they need, which is often not possible because of family circumstances:

Take our Little Fighter Heini, for instance…

Heini BirthdayHeini was diagnosed with Epydymoma (malignant) brain cancer on the 12th November 2012, at the age of 3. He was transferred from George Hospital and flown down to the Red Cross War Memorial Children’s Hospital in Cape Town where he underwent an operation to drain the fluid from his brain, and on the 15th November 2012 he underwent an 8 hours long brain operation to remove the growth.

Heini is still suffering daily, experiences major headaches, mood swings, depression, forgetfulness, developmental problems, and much more, and it is a daily struggle for him and his single mother to just cope with the cancer, never mind all the side-effects and traumatic stress. You can read more about Heini HERE.

Even though there is some help available on a psychosocial level, it is difficult to access as transport is a problem and the places where Heini can get help near to where he lives are so overwhelmed that it takes months to just get an appointment, let alone regular therapy.

The Little Fighters Cancer Trust does what we can to help where and when we can, but it is difficult because the funds that we manage to raise are already stretched SO far just to help clothe and feed our Little Fighters and their Families and provide all the other services that we do via different Projects.

Unfortunately, until the South African Government does more for our Children with Cancer or helps organisations like ours with at least some funding so that we can do more, Little Fighters like Heini will continue to slip through the cracks.


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About LFCT

This is a blog about CHILDHOOD CANCER and CHILDHOOD CANCER AWARENESS Little Fighters Cancer Trust is a non-profit organisation that offers support and aid to Children with Cancer and their families. When a child is diagnosed with cancer it affects the whole family. One of the parents, usually the mother, must give up their job to care for the child and this creates financial problems for the family. In South Africa especially the majority of these families are not well-to-do; many of them are rural. A diagnosis of cancer can wipe out any family’s finances, let alone a poor family. The costs of special medications, special diets, hospital stays, transport to and from the hospital or clinic and accommodation and food costs for the mother who spends most of the time at her child’s bedside are astronomical. These are the people and problems that fall through the cracks, and these are the people that Little Fighters Cancer Trust has pledged to help in any way possible. LFCT takes a holistic approach to assisting the Children with Cancer and their Families, with the main aim to be the preservation of individual dignity and pride. Little Fighters Cancer Trust also focuses on promotion and advocacy of National Childhood Cancer Awareness in an effort to increase awareness of Early Warning Signs of Childhood Cancer. This would result in earlier diagnosis, giving the Child with Cancer more of a chance at Treatment and Survival. See "About" for more Background info

Posted on 27 January, 2016, in Advice & Tips, Articles, Blog, Research and tagged , , , , , , , , , , , . Bookmark the permalink. Leave a comment.

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