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Life situation in patients and their family members after allogeneic hematopoietic stem cell transplantation: aspects of health and support in different care settings
Sophiahemmet University.ORCID iD: 0000-0002-6331-8599
2015 (English)Doctoral thesis, comprehensive summary (Other academic)
Abstract [en]

Allogeneic hematopoietic stem cell transplantation (HSCT) is mainly an intensive treatment option for hematology malignancies. During the past decades, improved care and treatment have been systematically developed. One example is the possibility for patients to choose to be at home rather than in the hospital during the early neutropenic phase after HSCT. Recent studies have shown positive medical advantages with home care. The overall aim of this thesis was to describe patients and family members’ life situation after HSCT, as well their experiences from two different care setting: the patient’s home or the hospital. Data from patient-reported experiences were used in studies I and II and patient reported- outcomes in study III. In study IV data from family members experiences were used. Data from 173 (study I n=41; study II n= 15; study III n= 117) patients and 14 family members (study IV) were included in the thesis.

In study I patients in both the hospital care group and the home care group expressed high satisfaction with the care and support during the acute post- transplantation phase.

In study II four categories were identified from the interviews with patients To be in a safe place, To have a supportive network, My way of taking control, and My uncertain way back to normal.

In study III, a cross-sectional survey was conducted and the majority of patients in both hospital care (77%) and home care (78%) rated their general health as ‘good’. A median of 14 symptoms were reported by patients in both hospital (0- 36) and home care (1-29). There were no significant differences regarding general health, symptom occurrence or self-efficacy between patients in hospital and those in home care.

In study IV interviews with family members generated a main category, Being me and being us in an uncertain time was identified and five generic categories To receive the information I need, To meet a caring organization, To be in different care settings, To be a family member, and To have a caring relationship.

In summary, numerous factors (the care routines, information, the competence and support from the health care team) related to the care were shown to influence the feeling of being safe regardless of care setting. Both patients and family members express the uncertainty associated with the HSCT. Different strategies (to have faith, being positive, hope and live in the present) were used to balancing the uncertainty. The majority of patients in both hospital care and home care rated their general health as ‘good’. A high symptom occurrence was reported in both groups in median five years post HSCT.

Place, publisher, year, edition, pages
Stockholm: Karolinska Institutet , 2015. , 60 p.
Keyword [en]
Allogeneic hematopoietic stem cell transplantation, Family member, Home care, Hospital care, Patient reported experiences, Patient reported outcomes
National Category
Nursing
Identifiers
URN: urn:nbn:se:shh:diva-1853ISBN: 978-91-7549-902-4 (print)OAI: oai:DiVA.org:shh-1853DiVA: diva2:813367
Public defence
2015-06-05, Sophiahemmet University, Erforssalen, Valhallavägen 91, Hus R, Stockholm, 12:31
Opponent
Supervisors
Available from: 2015-05-22 Created: 2015-05-22 Last updated: 2016-06-09Bibliographically approved
List of papers
1. Hospital care or home care after allogeneic hematopoietic stem cell transplantation: patients' experiences of care and support
Open this publication in new window or tab >>Hospital care or home care after allogeneic hematopoietic stem cell transplantation: patients' experiences of care and support
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2013 (English)In: European Journal of Oncology Nursing, ISSN 1462-3889, E-ISSN 1532-2122, Vol. 17, no 4, 389-395 p.Article in journal (Refereed) Published
Abstract [en]

PURPOSE:

Treatment at home during the pancytopenic phase after allogeneic hematopoietic stem cell transplantation (HSCT) has been an option for patients at our center since 1998. Earlier studies have shown that home care is safe and has medical advantages. In this study, we present patients' experiences of care and support while being treated in hospital or at home during the acute post-transplantation phase.

METHOD:

Patients (n = 41, 22 in hospital care and 19 in home care) answered the SAUC questionnaire at discharge (when home, or from hospital). Both statistical analysis and deductive content analysis were used.

RESULTS:

The patients were highly satisfied with the care and support during the acute post-transplantation phase. Patients in home care were found to be more satisfied with care in general than patients in hospital care. The importance of safety, empathy, and encouragement from healthcare staff were expressed regardless of where care was given. Patients also felt that receipt of continuous, updated information during treatment was important and they had a strong belief in HSCT but were uncertain of the future regarding recovery.

CONCLUSIONS:

The main findings of this study were that in comparison to hospital care, home care does not appear to have a significant negative effect on patients' experiences of care and support during the acute post-transplantation phase. In addition patients in home care felt safe, seen as a person and encouragement seem to empower the patients at home. Thus, this study may encourage other transplantation centers to provide home care if the patients want it.

Keyword
Allogeneic stem cell transplantation, Hospital care, Home care, Patient satisfaction, Pancytopenic phase, Mixed methods analysis
National Category
Nursing
Identifiers
urn:nbn:se:shh:diva-1143 (URN)10.1016/j.ejon.2012.12.004 (DOI)23347992 (PubMedID)
Available from: 2012-09-20 Created: 2012-09-20 Last updated: 2015-05-22Bibliographically approved
2. Patients' life situation during allogeneic hematopoietic stem cell transplantation - when care is given in different care settings
Open this publication in new window or tab >>Patients' life situation during allogeneic hematopoietic stem cell transplantation - when care is given in different care settings
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(English)Manuscript (preprint) (Other academic)
National Category
Nursing
Identifiers
urn:nbn:se:shh:diva-1851 (URN)
Available from: 2015-05-21 Created: 2015-05-21 Last updated: 2015-05-22Bibliographically approved
3. General health, symptom occurrence, and self-efficacy in adult survivors after allogeneic hematopoietic stem cell transplantation: a cross-sectional comparison between hospital care and home care
Open this publication in new window or tab >>General health, symptom occurrence, and self-efficacy in adult survivors after allogeneic hematopoietic stem cell transplantation: a cross-sectional comparison between hospital care and home care
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2015 (English)In: Supportive Care in Cancer, ISSN 0941-4355, E-ISSN 1433-7339, Vol. 23, no 5, 1273-83 p.Article in journal (Refereed) Published
Abstract [en]

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 self-efficacy in adult survivors who received either home care or hospital care during the early neutropenic phase after allo-HSCT and to investigate whether demographic or medical variables were associated with general health or symptom occurrence in this patient population.

METHODS: In a cross-sectional survey, 117 patients (hospital care: n = 78; home care: n = 39) rated their general health (SF-36), symptom occurrence (SFID-SCT, HADS), and self-efficacy (GSE) at a median of 5 (1-11) years post-HSCT.

RESULTS: No differences were found regarding general health, symptom occurrence, or self-efficacy between groups. The majority of patients in both hospital care (77 %) and home care (78 %) rated their general health as "good" with a median of 14 (0-36) current symptoms. Symptoms of fatigue and sexual problems were among the most common. Poor general health was associated with acute graft-versus-host disease (GVHD), low self-efficacy, and cord blood stem cells. A high symptom occurrence was associated with female gender, acute GVHD, and low self-efficacy.

CONCLUSIONS: No long-term differences in general health and symptom occurrence were observed between home care and hospital care. Thus, home care is an alternative treatment method for patients who for various reasons prefer this treatment option. We therefore encourage other centers to offer home care to patients.

Keyword
Allogeneic hematopoietic stem cell transplantation, General health, Symptom occurrence, Self-efficacy, Home care, Hospital care
National Category
Nursing
Identifiers
urn:nbn:se:shh:diva-1721 (URN)10.1007/s00520-014-2476-9 (DOI)25322970 (PubMedID)
Available from: 2014-10-23 Created: 2014-10-23 Last updated: 2015-09-15Bibliographically approved
4. Being me and being us in an uncertain time: Family members' experiences during allogeneic hematopoietic stem cell transplantation when care is given in the patient's home or in hospital
Open this publication in new window or tab >>Being me and being us in an uncertain time: Family members' experiences during allogeneic hematopoietic stem cell transplantation when care is given in the patient's home or in hospital
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(English)Manuscript (preprint) (Other academic)
National Category
Nursing
Identifiers
urn:nbn:se:shh:diva-1852 (URN)
Available from: 2015-05-21 Created: 2015-05-21 Last updated: 2015-05-22Bibliographically approved

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