– I was the one who wheeled mum in a wheelchair and was her voice in public places, because she had almost no voice at all. As far back as 21-year-old Maria Paz Galgum Evensen can remember, her mother has struggled with cancer and the late effects of cancer. As if that wasn’t enough. When she turned 12 and was about to start secondary school, her father got bone marrow cancer. With a little brother in the family, Maria took on the adult role. And it has not only been easy being relatives of one’s own seriously ill parents. – Mum has regular follow-up from the hospital and is there a lot. But I feel that we who are next of kin have been forgotten in the follow-up afterwards. LATE INJURIES: Eva Beate Galgum lives with late effects after years of tough cancer treatment. She says children are often forgotten by the public when parents become seriously ill. Photo: Reidar Gregersen Misses better follow-up Mother Eva Beate Galgum sits next to her and her eyes go blank at what her daughter tells. – After the first period, the children are forgotten by the healthcare system, she says. – It was a demanding time. Everything was so uncertain, says the 21-year-old today. They are not alone in feeling that way. Now researchers have taken a closer look at what it is like to live with a parent with life-threatening cancer. – The young relatives miss more follow-up from health personnel. They want more information and want to be more involved also after the first acute phase when mother or father has fallen ill, says Emily Bergersen. YOUNG RELATIVES: Emily Bergersen is a senior lecturer at the Faculty of Health and Social Sciences at the University College in Innlandet and in the final sprint of her doctoral work as a research fellow at Karlstad University in Sweden. Photo: Privat The university lecturer at the University College in Innlandet is in the final stages of his doctorate at Karlstad University in Sweden. Recently, she had an article published in the journal BMC Palliative Care. In the study, the researchers conducted in-depth interviews with ten young people between the ages of 17 and 24 with parents with cancer. – The common thing is that many people feel lonely because they have to deal with the challenges on their own, says Bergersen. Many young people also struggle to live their own lives without feeling guilty about the sick parent at home. GET IN TOUCH: On her own initiative, Maria has become active in the Cancer Society and also sits on the Youth Council of Sjukehuset Innlandet as a representative from the Cancer Society. Photo: Reidar Gregersen The biggest problem is that they are not offered talks with health personnel after the parent has passed away, says Bergersen. – Then there is nothing there. Young people must seek help and support themselves. It feels very demanding. Young relatives with parents with cancer In Norway, 34,000 children under the age of 18 live with a parent who has or has or has had cancer. Every year, almost 3,500 children and young people under the age of 18 experience that one of their parents gets cancer. Around 700 young people under the age of 18 will lose a parent to cancer in the course of a year, figures from the Cancer Registry show. Want more resources There is legislation to help children who are relatives of sick parents. The Norwegian Directorate of Health introduced a package procedure from January 2022. A few years ago there was also a “relative supervisor” with an extra focus on young relatives. – Theory and practice are clearly not in sync yet, that is probably where the challenge lies, says Emily Bergersen. District manager Berit Jevnaker of the Cancer Association in Inlandet agrees that the follow-up of young relatives is too poor. The head of the Cancer Association, Berit Jevnaker, says it is good, new research states that there is still a lack of follow-up of young relatives. Photo: Stein S Eide / news – More resources must be allocated so that healthcare personnel have time to follow up on the legislation. She says the most important thing is to talk about it. – It is not the hospitals alone that are responsible for this, but also us at the Cancer Society. We do that too. The Directorate of Health: – Increase allocations – We must assume that the municipal health and care services comply with the legislation and follow the provisions that apply there, says senior adviser Jacqueline Sæby in the Directorate of Health. She says the support for relatives with demanding care tasks has received an increased allocation in 2023 from 9 million to 19.2 million. Senior adviser Jacqueline Sæby, Directorate of Health Photo: Directorate of Health She also says that the Directorate of Health, in collaboration with user and relative organisations, has carried out a relative survey on how young people between the ages of 16–25 experience living their lives when they are relatives of family members. – The survey has given us good information about how children and young people experience being relatives of sick parents, says Sæby. She says this knowledge is now being used to create a new caregiver guide, which should be completed before the summer. The aim is for it to contribute to supporting relatives’ work in the health and care service. Made contact herself Maria Paz Galgum Evensen made contact with the cancer association herself after her mother became actively involved. – I have been to the Cancer Society’s camp and got to talk to others who feel the same way as me. It’s something I’ve missed. Maria Paz Galgum Evensen and mother Eva Beate Galgum think there should be a separate offer for young relatives with seriously ill parents. MISSING CONVERSATIONS: Maria’s mother is on the road to recovery, and is not undergoing treatment. Daughter Maria feels as a relative she has been forgotten in the good follow-up mum now receives. Photo: Reidar Gregersen The 21-year-old is now in his first year of nursing education at NTNU Gjøvik. She is doing well despite a demanding upbringing. – I have experience that many others do not have and I have grown from it. But I would also like to be. Requires more resources Researcher Emily Bergersen is herself a trained nurse and is therefore extra concerned with how young relatives perceive the support they receive from the healthcare system. She says it is important to set aside more money and time to follow up young relatives. Children and young people who grow up with life-threateningly ill parents and lose parents at a young age are exposed to a number of physical and mental health challenges, she says. – This certainly does not apply to everyone, but it can be useful to think preventively.
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Young relatives with seriously ill parents lack follow-up from the health care system – news Innlandet – Local news, TV and radio
