Ulla Forinder

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Marlene R E N A T E Atleo

University of Manitoba

Antioch University

Deakin University

University of Trento

Linköping University

University of the Basque Country, Euskal Herriko Unibertsitatea

Olav Eikeland

OsloMet—Oslo Metropolitan University

Soepatini Soepatini

Universitas Muhammadiyah Surakarta

Laurence Cox

National University of Ireland, Maynooth

Ziya Öniş

Koç University

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Papers by Ulla Forinder

Quality of life and health in children following allogeneic SCT

Bone Marrow Transplantation, 2005

A total of 52 children, age 9 or over and at least 3 years (median ¼ 8) beyond SCT for leukaemia ... more A total of 52 children, age 9 or over and at least 3 years (median ¼ 8) beyond SCT for leukaemia (n ¼ 32) or nonmalignant diseases, participated in a single-centre study of health and quality of life (QoL). QoL and self-esteem were assessed with SCHQ-CF87, a generic multidimensional self-report instrument, and with 'I think I am'. As a group, the children had good QoL, but were below norm in the bodily pain (Po0.05), general health and self-esteem dimensions (Po0.01). Lansky or Karnofsky function levels were at a median of 90. Sense of coherence (SOC-13) was normal and correlated with SCHQ-CF87. Most children were subjectively and objectively in good health according to a self-assessment symptom inventory or by a medical record-based scoring of late effects, although pain was commonly reported. A total of 25% of the patients were rated as having moderate to severe late effects, without considering cataracts or infertility. Neither age at SCT, gender, malignant vs nonmalignant disease, nor stature influenced QoL significantly. Children with moderate to severe chronic graft-versus-host disease or cognitive deficits had lower QoL in some dimensions. No correlation was, however, found between the physician-rated total late effects score and overall QoL. Contrarily, QoL was clearly related to the degree of self-rated symptoms.

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Quality of life following allogeneic stem cell transplantation, comparing parents' and children's perspective

Pediatric Transplantation, 2006

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Long-Term Psychosocial Support for Families of Children Who Have Undergone Allogeneic Stem Cell Transplant

Social Work in Health Care, 2008

Stem cell transplant (SCT) in children has a continuing impact in the lives of the SCT recipients... more Stem cell transplant (SCT) in children has a continuing impact in the lives of the SCT recipients and their families. This realization has led to extended psychosocial support to these families. The aim of this study was to evaluate the extended psychosocial support. How many families accepted the proffered contact with the social worker and what kind of support did the families ask for? The data were collected from the patients&amp;amp;amp;amp;#39; medical charts by the health care social worker. Content analysis was used as the research method. The study reveals a need for continued psychosocial support lasting many years after treatment. The need for support does not lessen with the passage of time, but the nature of the support changes.

“Now we have to cope with the rest of our lives”. Existential issues related to parenting a child surviving a brain tumour

Supportive Care in Cancer, 2009

The aim of the paper was to explore the existential issues expressed by parents of children who h... more The aim of the paper was to explore the existential issues expressed by parents of children who had been treated for brain tumours. A brain tumour in childhood is an event that triggers acute traumatic stress and it has long-term consequences for the child as well as for the parents. Due to advanced treatment techniques, more children survive brain tumours today. However, for most survivors a brain tumour is associated with sequelae and uncertainty about the future. Eleven parents of seven children successfully treated for brain tumours were interviewed in 2006. The semi-structured interviews were conducted by two licensed psychologists. The Inductive Thematic method was used to analyse the data. Consequences of a perceived threat, uncertainty and loss were described in terms of grief and sadness, loneliness, changes in the conditions for parenting, and changed views regarding identity and meaning. A traumatic experience is typically followed by an existential crisis, i.e. a process of restoring the person&#39;s assumptive world. As summarized by one parent: &quot;Now we have to cope with the rest of our lives&quot;. The statement can be seen as a metaphor for the reconstruction of everyday life - a new picture including the child&#39;s disease and its sequelae, as well as the uncertainty about what the future might be like. The findings underscore the importance of the social network, validating and supporting parents through this process. Moreover, in this social network the paediatric oncology and neurology care is a significant part.

Quality of life and health in children following allogeneic SCT

Bone Marrow Transplantation, 2005

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Quality of life following allogeneic stem cell transplantation, comparing parents' and children's perspective

Pediatric Transplantation, 2006

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Long-Term Psychosocial Support for Families of Children Who Have Undergone Allogeneic Stem Cell Transplant

Social Work in Health Care, 2008

“Now we have to cope with the rest of our lives”. Existential issues related to parenting a child surviving a brain tumour

Supportive Care in Cancer, 2009

Ulla Forinder

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