Thursday, May 27, 2004
Nordic Forum Helsinki 2003 Summary
Summary of the 8th Nordic Meeting for Blood and Bone Marrow Transplantation Nurses
November 7-9th 2003 Helsinki, Finland
The topic of the 2003 fall meeting was family issues. The meeting was held at the Finnish Red Cross Blood Central and gathered 48 nurses from Denmark, Norway, Sweden and Finland.
We started Friday night with a get together dinner with Dr Veli-Jukka Anttilas lecture on infections with a lot focus on the CMV infections that contaminate 80 % of the stem cell transplantation patients. Our sponsor Roches’ representatives presented their newest medicine for the CMV ; the valganciclovir.
Saturday started with Gun-Britt Lejonqvists’ presentation on the importance to promote and favor home care of a chronically/severely ill child as opposed to hospital care. ”Being at home means HOPE to the child and her family”.
Psychologist Maarit Louhi talked about coping with crisis with a practical suggestion on processing grief and shock by writing 20 minutes of free association text daily. She also emphasized accuracy of information and availability of professional help and peer groups.
Hanne Baekgaard Laursen spoke about the cultural background of the concept of “family” and the great value that only recently has bee put upon the child in the postmodern society. She presented parts of her study on the experiences of parents of children that suddenly been struck by a serious and potentially fatal disease.
We also heard Pia Tianens and Henna Ikäheimos experiences on setting up a peer group that they had for BMT/SCT patients and their spouses. This experimental group shows how much valued support can be established with very limited resources.
Elina Karvonen told a very touching and sincere story of her husband’s illness and treatment. Judging by evaluations given by the attendees her presentation was much appreciated and the audience found it very useful to hear a history like this outside their everyday environment at the hospital.
Saturday closed with four workshops on the following themes:
The pediatric group:
How to support the unity of the family, what is the reality of support in different hospital and what would be optimal?
Also, are there standards for support systems for the families?
The workshop also talked about siblings and isolation routines.
The ethical group:
How deep/thorough into a family may you intrude/dwell/”invade” as you are trying to help and support?
Whose needs are in focus?
Is there a fixed limit of involvement?
Is it acceptable to “force” help and support in a situation where help/support has not been explicitly asked for?
Can and should we try to solve every problem?
Is support a gender issue?
Are the family members given enough time?
The reality workshop:
Was asked to reflect upon the manners in which family members / spouses / partners are take into consideration and supported in the daily reality of the care?
The donor group:
This workshop was asked to find out amongst them if there is regimen somewhere to keep in touch with the donor and how to meet the many concerns of the donors?
Another difficult issue to ponder was how to support the donor if transplantations seem to be unsuccessful?
The attendees were very pleased with workshops. All groups produced notes and material that they presented the following morning. This greatly activated the audience in discussion and sharing.
Sunday followed with Päivi Hiltunen telling us about Photopheresis, a new treatment for GVHD. This procedure can help to alleviate the various dermatological symptoms in chronic GVHD and even help in acute GVHD of the gut.
Ph.D. Terhi Utriainen lectured on suffering. This long and extensive presentation could maybe be summarized in: “ Suffering is an undeniable part of life and unavoidable. The intensity and amount of suffering will vary in different times in the life of an individual but may become once so excessive that it overwhelms her and leaves with no energy at all. We must respect a persons suffering but not accept it since accepting suffering may lead us to become undedicated to alleviating suffering”.
November 7-9th 2003 Helsinki, Finland
The topic of the 2003 fall meeting was family issues. The meeting was held at the Finnish Red Cross Blood Central and gathered 48 nurses from Denmark, Norway, Sweden and Finland.
We started Friday night with a get together dinner with Dr Veli-Jukka Anttilas lecture on infections with a lot focus on the CMV infections that contaminate 80 % of the stem cell transplantation patients. Our sponsor Roches’ representatives presented their newest medicine for the CMV ; the valganciclovir.
Saturday started with Gun-Britt Lejonqvists’ presentation on the importance to promote and favor home care of a chronically/severely ill child as opposed to hospital care. ”Being at home means HOPE to the child and her family”.
Psychologist Maarit Louhi talked about coping with crisis with a practical suggestion on processing grief and shock by writing 20 minutes of free association text daily. She also emphasized accuracy of information and availability of professional help and peer groups.
Hanne Baekgaard Laursen spoke about the cultural background of the concept of “family” and the great value that only recently has bee put upon the child in the postmodern society. She presented parts of her study on the experiences of parents of children that suddenly been struck by a serious and potentially fatal disease.
We also heard Pia Tianens and Henna Ikäheimos experiences on setting up a peer group that they had for BMT/SCT patients and their spouses. This experimental group shows how much valued support can be established with very limited resources.
Elina Karvonen told a very touching and sincere story of her husband’s illness and treatment. Judging by evaluations given by the attendees her presentation was much appreciated and the audience found it very useful to hear a history like this outside their everyday environment at the hospital.
Saturday closed with four workshops on the following themes:
The pediatric group:
How to support the unity of the family, what is the reality of support in different hospital and what would be optimal?
Also, are there standards for support systems for the families?
The workshop also talked about siblings and isolation routines.
The ethical group:
How deep/thorough into a family may you intrude/dwell/”invade” as you are trying to help and support?
Whose needs are in focus?
Is there a fixed limit of involvement?
Is it acceptable to “force” help and support in a situation where help/support has not been explicitly asked for?
Can and should we try to solve every problem?
Is support a gender issue?
Are the family members given enough time?
The reality workshop:
Was asked to reflect upon the manners in which family members / spouses / partners are take into consideration and supported in the daily reality of the care?
The donor group:
This workshop was asked to find out amongst them if there is regimen somewhere to keep in touch with the donor and how to meet the many concerns of the donors?
Another difficult issue to ponder was how to support the donor if transplantations seem to be unsuccessful?
The attendees were very pleased with workshops. All groups produced notes and material that they presented the following morning. This greatly activated the audience in discussion and sharing.
Sunday followed with Päivi Hiltunen telling us about Photopheresis, a new treatment for GVHD. This procedure can help to alleviate the various dermatological symptoms in chronic GVHD and even help in acute GVHD of the gut.
Ph.D. Terhi Utriainen lectured on suffering. This long and extensive presentation could maybe be summarized in: “ Suffering is an undeniable part of life and unavoidable. The intensity and amount of suffering will vary in different times in the life of an individual but may become once so excessive that it overwhelms her and leaves with no energy at all. We must respect a persons suffering but not accept it since accepting suffering may lead us to become undedicated to alleviating suffering”.
