Background to the Research

• CLIC Sargent staff at two hospitals in NI - the RBHSC and the BCH - noted that children and young people had views about their cancer treatment, about the information they were receiving/needed and about the impact of their treatment on their lives. CLIC Sargent raised these issues with colleagues in the NI Cancer Forum and it was decided that a review of cancer services for children and young people was needed. An audit was recommended: to identify which services were already in place and used by families; to identify by what means did families access the information they required; and to clarify the crucial gaps.
  

Research Approach

• The research project involved asking children, young people and their parents directly about their support needs. One questionnaire was designed for children and young people aged 8-25 and another for the parents of children and young people aged 0-25. Respondents consisted of 52 parents, 21 young people (12-25 years) and 19 children (8-11 years). Data were collected from families who were attending the RBHSC, the BCH or regional/local hospitals between 2003 and 2005.
  

Main Findings

Young People's Views

• Almost all of the young people reported that their treatment affected the way they felt, the way they looked and their ability to do normal things. The treatment experience was described as difficult, with a common reaction being tiredness and nausea. All but one of the young people reported concerns about changes to their physical appearance, particularly hair loss.
• The quality of information is important and young people rated having access to information highly; they wanted to know more while on treatment as well as after treatment when getting ready to go home. A majority (91%) reported receiving information on their treatment and 86% reported understanding the information they were given.
• The 'going home' experience could be improved - a third of respondents reported that they hadn't received information on the effects of their illness and over half reported not having any written plan to take home with them when they left treatment.
• Keeping up with education is difficult, with young people reporting that they often felt too tired or nauseous/sick to keep up with their studies. Only four young people (19%) were able to continue with their education in school; however, eight (38%) received home tuition. Returning to school after treatment has finished is easier than trying to keep up with education while on treatment - only 4 young people (19%) experienced difficulties settling back in.
• Only 4 young people reported being in paid employment while receiving treatment. All but one had been able to keep contact with work. They experienced difficulties in returning to work due to tiredness and lack of energy, but they did receive help from family, friends and employers.

Parents' Views

• Information is important to parents, especially once back home. Parents requested information in 'plain English' on medications, side-effects, and emotional well-being. The majority of parents (93%) reported receiving information on their child's treatment and most (87%) reported understanding this. However, only 72% felt that this information met their needs. Parents requested in-depth information on treatments, treatment plans and side-effects. Some parents commented that they would have preferred their information coming from one source, preferably the consultant in charge of their child's case.
• Help with transitioning to home care is important and parents reported that it helps to know what options exist for treatment-at-home. Support from nurses and occupational therapists at home for day-to-day care was seen to be helpful. Although information was given to parents to explain the side effects of treatment, a third of parents said they would have liked more information, and more than half of the parents reported not receiving help in preparing for their child coming home.
• More than half of the parents reported financial difficulties as a result of their child's illness; being unable to work or having to cut back on work hours were cited most frequently as the reasons for financial difficulties. Extra travel costs and a general rise in family expenditure were reported by many, whilst one respondent reported having to sell their house because the extra costs made it difficult to make mortgage payments. Two self-employed parents reported financial difficulties for their business due to taking time away to care for their child during treatment.
• Education is important to parents. Issues such as home tutoring were reported to be extremely helpful but are not always easy to organise, or fraught with considerable delays. After treatment ends, getting back into school/education is important and help facilitating this process as quickly as possible is helpful. Only 16 parents felt the education system catered well enough for their child; 5 parents did not, but most parents left this question blank.
• Half of the parents were offered help in coping with their feelings about their child's illness; of these, two-thirds took up this help.
• The top 6 sources of information reported by the parents and young people were: CLIC Sargent (then Sargent Cancer Care for Children and CLIC); Cancer Backup; NI Cancer Fund for Children; Social Security agency; Macmillan Cancer Relief; and Family Fund Trust. CLIC Sargent was mentioned three times more often than any other service.

Conclusions

• Young people have a view about their own treatment and support needs. They want to know more about their treatment - while on treatment and when getting ready to go home. Information about their treatment is also helpful to them in the long-term as a health record.
• Young people can benefit from going through the treatment experience with other young people e.g. youth support and activity groups.
• Young people need support with keeping up with education (school is also a source of social support).
• Young people depend on their siblings and their friends for support, therefore support to both siblings and friends should also be offered by cancer support services.
• Young people can advocate on their own behalf, but need the support of community organisations.
• Outcomes since this study was carried out were noted to include greater support for young people in NI and more focus on the needs of young people with cancer.