Jeanette Winterling

Karolinska Institutet | KI · Department of Neurobiology, Care Sciences and Society - NVS

Background The physical risks involved in donating hematopoietic stem cells have been thoroughly studied, but little is known about the psychological risks potential donors might face before donation. The aim of this study was to describe potential the pre-donation worries and psychological well-being of hematopoietic stem cell donors and investiga...

Background The Stockholm region was hard hit by the first wave of COVID-19, although, in contrast to other countries, Sweden introduced less strict protective measures. Furthermore, early studies highlighted the fact that patients with cancer were at increased risk of becoming seriously ill with COVID-19. The aim was to describe perceptions of risk...

Purpose Allogeneic hematopoietic stem cell transplantation (HSCT) is an intensive curative treatment that increases family caregivers’ burden. The aim of this study was to explore the feasibility of remotely assessing and addressing family caregivers’ support needs in terms of demand and acceptability using the Carer Support Needs Assessment Tool I...

Purpose Allogeneic hematopoietic stem cell transplantation (HSCT) is an intensive curative treatment that increases family caregivers’ burden. The aim of this study was to explore the feasibility of remotely assessing and addressing family caregivers’ support needs in terms of demand and acceptability using the Carer Support Needs Assessment Tool I...

Background: Patients are affected by various symptoms after allogeneic hematopoietic stem cell transplantation (allo-HSCT) that can affect recovery. Research has mainly focused on symptom occurrence; thus, little is known about patients' overall symptom burden. Objective: The aim of this study was to examine patient-reported symptom burden in th...

Purpose This study examines sick leave (SL) and factors associated with full-time SL 1 year after allogeneic haematopoietic stem cell transplantation (allo-HSCT) in patients of working age from 2009 to 2016 ( n = 122). Methods Questionnaire data were collected on admission to the allo-HSCT unit, at 7 months and 1 year after allo-HSCT. Associations...

Background In the implementation of standardized cancer patient pathways (CPPs), the investigatory units, endoscopy, radiology and pathology, are crucial to ensure an eventual cancer diagnosis. However, when evaluating the implementation of CPPs, little attention has been paid to the healthcare professionals working in these units. The aim of this...

Objective Allogeneic hematopoietic stem cell transplantation (allo-HSCT) is a curative treatment associated with high morbidity and mortality. It is often necessary for family caregivers to become highly involved in the care, especially when patients return home after a long period of inpatient care. Family caregivers’ preparedness for the tasks an...

Objective: To explore the role of personality traits in moderating the relation between COVID-19 risk perception and treatment adherence, and between risk perception and psychosocial distress in patients diagnosed with cancer. Methods: An online survey (n= 1281) was conducted worldwide in seven countries (Austria, Germany, Hong Kong, Italy, Spain,...

Purpose The study aimed to explore family caregivers’ support needs prior to allo-HSCT, how these change over time and whether they are associated with demographic factors and caregiver outcome. Methods This longitudinal repeated measure study included 87 family caregivers of allo-HSCT recipients: 63% were partners, 74% women, 65% lived with the r...

Background: In the implementation of standardized cancer patient pathways (CPPs), the investigatory units, endoscopy, radiology and pathology, are crucial to ensure an eventual cancer diagnosis. However, when evaluating the implementation of CPPs, little attention has been paid to the healthcare professionals working in these units. The aim of this...

Background and aim Family caregivers are often involved in helping recipients during allogeneic hematopoietic stem cell transplantation (allo-HSCT). Although the distress that often arises along the trajectory is evident to family caregivers, research on their perceptions of providing and receiving support is limited. The aim of this study was to e...

Purposes: The aim was to explore the ways young adult survivors of childhood cancer with risk of being infertile understand their ability to have children. Method: The study has a qualitative design with a phenomenographic approach. Interviews with a purposeful sample of 19 childhood cancer survivors who did not have children (age range 17-27) w...

Sexual and reproductive health is known to generally be insufficiently addressed by health care personnel working in cancer care. We hence developed a short educational intervention, Fex-Talk, to overcome the barriers to communicate about sexuality and fertility. The present study sought to evaluate the Fex-Talk intervention, which aims to enhance...

Purpose: The purpose of the study is to evaluate the feasibility of a self-help web-based intervention to alleviate sexual problems and fertility distress in adolescents and young adults with cancer. Methods: Twenty-three persons with cancer (19 women and 4 men, age 18-43, 1-5 years post-diagnosis of lymphoma, breast, gynecologic, central nervou...

Background: The Internet should be suitable for delivery of interventions targeting young cancer patients. Young people are familiar with the technologies, and this patient group is small and geographically dispersed. Still, only few psycho-educational Web-based interventions are designed for this group. Young cancer patients consider reproductive...

The aim was to investigate how childhood cancer survivors perceive school and whether their perceptions differ from corresponding descriptions of peers. Survivors (n = 48) currently attending educational institutions (median 5 years post diagnosis; now aged 12-21 years) from a national cohort of school-age children were compared with matched peers...

Myelodysplastic syndromes (MDS) constitute a heterogeneous group of clonal bone marrow disorders characterized by chronic refractory anemia. Many patients with MDS are dependent on regular blood transfusions. The study aimed to investigate symptoms of anemia and fatigue in patients with MDS immediately before and after blood transfusion and to capt...

Purpose: Earlier studies have shown that home care during the neutropenic phase after allogeneic hematopoietic stem cell transplantation (allo-HSCT) is medically safe, with positive outcomes. However, there have been few results on long-term outcomes after home care. The aims of this study were to compare general health, symptom occurrence, and se...

Being in work or the equivalent is an important goal after allo-SCT and is used as an indicator of recovery. The aim was to elucidate occupational status and factors associated with work among SCT survivors. Adults in working age with a haematological disease (n=177) were followed up within a median of 8 (range 28) years post allo-SCT. Predictors o...

Survivors of childhood cancer are a growing population in society. These young people have a high risk of developing chronic health problems with a potential strong impact on their lives. How a childhood cancer experience affects survivors in adolescence has been studied to a limited extent; an increased understanding of this young group is needed...

Patient participation in goal setting and decision making is a core component of the rehabilitation process, but there is little information on what patients want to achieve after allogeneic stem cell transplantation (allo-SCT). The aim of this study was to describe adult patients' perceptions of goals related to health and function, as well as sel...

Patients with advanced gastrointestinal cancer often have a short survival time. This means that spouses only have a short time to adjust to the approaching death. The aim was to explore whether psychological distress at diagnosis, the course of the illness (anti-tumour treatment, respite period and survival time), the spouses' experience of the ca...

WINTERLING J., SIDENVALL B., GLIMELIUS B. & NORDIN K. (2009) European Journal of Cancer Care Expectations for the recovery period after cancer treatment – a qualitative study The aim was to explore what expectations patients have concerning the recovery period after completed curative cancer treatment and the degree to which these expectations were...

The purpose was to study expectations concerning recovery-related changes in life, e.g. beliefs regarding future adjustment back to 'normal' life after curative cancer treatment, whether these expectations were met and their importance for both patients' and their spouses' quality of life and psychological distress. Sixty-two patients and 42 spouse...

The purpose was to investigate the relevance of philosophy of life as well as optimism for the psychological distress among Swedish individuals in a stage where death is approaching. Sixty-nine persons were included; of these were 42 patients newly diagnosed with advanced gastrointestinal cancer and 26 were partners to these patients. The participa...

There are few studies on patients' perceptions of their situation after being recently diagnosed with an advanced gastrointestinal cancer and those of their spouses. Fourteen patients and their spouses were interviewed separately. The interviews were analyzed using a phenomenographic approach. The analysis indicated that the response categories for...