Patient Support Groups

and Mhamed Harif2



(1)
South African Medical Research Council, Cape Town, South Africa

(2)
Université Mohammed VI des Sciences de la Santé Cheikh Khalifa Hospital, Casablanca, Morocco

 



Keywords
FamilyParentsSupportHousesTransportVolunteersPlay and music therapyPalliationBereavement supportSurvivor groupWard improvementsAdvocacy and awarenessInformation and educationFundingChildhood cancer international associationsGroupsFoundations


Childhood cancer can affect any child anywhere regardless of culture, financial well-being, education or the country where the child lives. Parents should not feel that they are to blame for their child contracting cancer. For this reason, having a child diagnosed with cancer, is one of the most life-changing challenges a family will ever have to face. The childhood cancer journey is often a very lengthy one, with initial treatment taking from a couple of months to a couple of years, with long-term after effects having to be negotiated for many years thereafter. Therefore, parent support groups and foundations have been, and need to be, formed throughout the world to help families cope with this journey.

There is a great disparity between high-income and middle–low-income countries in the quality of services and treatment available to patients and their families. Childhood cancer parent support groups and foundations often form a therapeutic alliance with the healthcare providers at treatment centers to overcome the challenges that are faced jointly by all stakeholders.


Overview



Growth of Parent Support Groups


The first known childhood cancer support group was started in 1968 by two fathers in Japan. They recognized the need to provide psychosocial support for each other and other families in the ward; understanding that as parents of children with cancer, they better understood the cancer journey that parents of newly diagnosed children will need to undertake.

The idea was noticed by some Americans visiting Japan, and in 1970 a Childhood Cancer Support Group called Candle Lighters was started in the USA. Their focus was mainly to assist bereaved parents. In the 1970s and 1980s more countries followed suite, and many more parent support groups were founded.

In Hanover, Germany in 1992, members of parent support groups were invited by the German parent support group, Deutsche Leukämie-Forschungshilfe (DLFH) , to attend a meeting at the SIOP conference. This was the first time that a parent, Ulrike Baum, was invited to address the conference at the opening ceremony of SIOP and made the voice of parents of children with cancer heard by the healthcare professionals present.

In 1993, parent support groups from 16 countries from Europe and the USA met in Valencia, Spain, to draft the constitution for an international body to represent parent support groups globally. The International Confederation of Childhood Cancer Parent Organizations (ICCCPO) was signed in 1994 in Valencia, with the mission “To share information and experience in order to improve access to the best possible care for children with cancer everywhere in the world”.

The ICCCPO grew steadily over the years, from the 11 original members in 1994 to 171 members from 88 countries in 2014. In 2014, the name ICCCPO was changed to Childhood Cancer International (CCI) which currently has 181 members from 90 countries.


Definition


A Childhood Cancer Parent Support Group consists of a group of individuals with the common purpose of addressing matters of concern involving children with cancer, their families and the treatment they receive. From here forward the term “Childhood Cancer Foundation” (CCF) will be used to describe all groups involved with children with cancer. These groups may consist only of parents of children who have been diagnosed with cancer, of groups that have no parents involved, or a combination of both. They could be formally registered (which is recommended) or informal, which would depend largely on the aims of the CCF and the level of enthusiasm and expertise of the members of the group.

Other commonly used terms are:



  • Parent: meaning parents of children diagnosed with childhood cancer.


  • Non-parents: those who share the same concerns as parents, but who have not had a child diagnosed with cancer.


  • NPO: non-profit organization .


Situation in Africa


Most children, who get childhood cancer (80 %), live in developing countries such as Africa [1] where the survival rate is much lower than those in developed countries.The incidence of childhood cancer from birth to age 19 years in a developed country such as the USA, is 1 in 285 children and adolescents [2]. In Africa, the incidence of childhood cancer is estimated at 94 cases per million [3]. However, as there are so few accurate, reliable childhood cancer registries on the African continent, this number may not reflect the true picture. Although there are some cancers that are thought to be caused by familial or genetic factors, and even less caused by environmental factors, in most cases (probably around 90 %) the cause is still unknown.

In Africa in 1997, there were only three known CCFs (Egypt, Morocco and South Africa). Since 2008, this position has changed dramatically with CCI having 25 members from 16 countries in 2015. There may be more CCFs that support children with cancer in Africa who are not members of CCI.


Typical Areas of Involvement


In Africa, childhood cancer affects not just the child and the family, but often the whole community. For the parents, this can mean major changes, such as having to leave their job or their farm. Siblings may feel abandoned by their parents, with all the focus now being centered on the ill child. Grandparents have a double burden, as they try to finds ways to help not only their child, but also their grandchild. For the community, among other things, it can be the need to run the farm or taking care of the family left behind at their home.

CCFs , especially in Africa, step in where the government or health services do not provide adequate care for the child with cancer. There are even rare examples where CCFs have built dedicated childhood cancer hospitals in their country.


Parent and Child Support



Parent-to-Parent


Helping new parents understand the diagnosis and the need to complete treatment protocols is a very important part of such support. Other activities could include: where new parents are welcomed into the ward and made to feel part of the cancer family by other parents who have been there for a while; basic coping skills for ward-life; one-on-one chats; explanations why it is necessary to complete treatment; preparing both patients and parents psychologically for medical procedures; discussion groups; information on the hospital layout; and where to shop.


Practical Support


Support is provided for needs such as: funding for transport to-and-from the treatment centers; food parcels for families left behind at home; extra food in the wards; clothing; wigs for the children; wheelchairs; medical devices to be used at home and prostheses. One of the most important services, is providing “parent homes.” These facilities house the parents and the patient while being treated, since their own homes are often a long distance from the treatment centers. Some CCFs are also able to arrange that children with cancer and their families have a brief holiday to get away from ward-life and have a few days or normal family life for a while. Others even supplement the loss of income of the caregiver or parent who needs to give up their job to look after their child who is ill.


Adolescents and Young Adults


Recent research suggests that adolescents and young adults (AYA) with cancer (age 15–20 years) should form a group separate to that of young children (age 0–14 years) as their medical and psychological needs differ. In most countries in Africa, AYAs are treated in adult oncology wards on adult protocols, despite recent research indicating that AYA cancers following a pediatric protocol have better outcomes. Internationally, websites and chat rooms have been established so that AYAs can support one another. There are wards, in Africa, especially for AYAs where their unique needs are better addressed, however, at the time of writing there were few. CCFs actively assist with establishing such wards where they are allowed by health departments and hospital administrators. Literature specifically for this group is also available from many CCFs globally through CCI.


Ward Volunteers


Volunteers help entertaining the children by reading or playing with them. These volunteers could also help with translation in general, but especially when healthcare professionals communicate the disease. They can also help with many others aspects of ward-life such as: personnal hygeine practices, answering telephones, filing, arranging transport, organizing information packs, completing forms for illiterate parents or caregivers, cleaning, cooking, distributing gifts and clothing and accompanying patients to other areas of the hospital.


Play and Music Therapy


CCFs organize volunteers and professionals to offer support through play therapy to address issues such as, accepting their diagnosis; how to cope with life in a hospital ward; hygiene; addressing their angers; overcoming fears of medical procedures; understanding of death; and alleviation of pain by listening to music.


Recreation


Patients and their families are offered a break from ward-life by organizing birthday parties, outings to places of interest, as well as attending special camps for children with cancer and possibly also their siblings in some countries.


Survivor Groups


Survivors form groups to offer support to one another on how to meet the challenges of long-term survival. They also advocate for change by governments and other institutions to address issues, such as discrimination when applying for work, health insurance being loaded, etc. There is a group called, Childhood Cancer International Survivors Network, run by survivors that can be contacted through www.​iccpo.​org.


Palliative Care


Some CCFs provide a palliative care service where treatment centers are understaffed or staff are overworked and unable to take adequate care of those for whom cure is no longer an option.


Bereavement Support


Families are assisted with the cost of funerals and the transport of the deceased child back home. Forming special bereavement support groups to assist in long-term support of the family. Arranging annual bereavement services, regular meetings for bereaved parents where they are addressed by experts in the field. Appointing bereavement counsellors specially trained to assist parents, siblings and relatives.


International and Regional Conferences


CCFs help organize an annual international conference for all stakeholders in childhood cancer matters, but with an emphasis on issues affecting the activities of CCFs. This usually takes place at the same venue where SIOP has their annual Conference. Regional conferences are also organized in the following regions: Africa, Asia, Europe, Latin America, North America and Oceania.


Treatment Center Support



Ward Improvements


CCFs make provision for the following needs at the treatment center:

Jun 26, 2017 | Posted by in PEDIATRICS | Comments Off on Patient Support Groups

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