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1.  Functional status and health-related quality of life among allogeneic transplant patients at hospital discharge: a comparison of sociodemographic, disease, and treatment characteristics 
Purpose
The purpose of this paper is to report the findings of a study of hematopoietic cell transplant patients, describing the needs of allogeneic transplant patients at the time of discharge in regard to their functional status, quality of life (QOL), and caregiver information and comparing these needs across a number of sociodemographic, disease, and treatment characteristics. The findings of this study are part of a larger mixed-methods study, representing one data time point of the larger study.
Methods
This paper will discuss the baseline data collected at the time of discharge for 282 allogeneic transplant patients, which include sociodemographic data combined with disease, treatment, functional status, and QOL data to present a comprehensive portrait of the transplant patient at discharge.
Results
Mean age was 48 years, males represented 52%, and 22% of the patients were Hispanic. The majority of the patients had acute leukemia (55%), were diagnosed within the last 3 years, and had matched unrelated (52%) transplants. The time from transplant to discharge averaged 30 days. Mean scores for QOL (scale = 1–10, with 10 = best QOL) included a low score of 5.7 for both psychological and social well-being, 6.3 for overall QOL, and 7.1 for both physical and spiritual well-being. Males had significantly higher QOL than females, as did non-Hispanics. Patients with Hodgkin’s disease had significantly lower overall QOL scores.
Conclusions
Our results highlight the physical, psychological, social, and spiritual challenges which present for patients and their caregivers at the time of hospital discharge following allogeneic transplant.
doi:10.1007/s00520-012-1389-8
PMCID: PMC3393810  PMID: 22318502
Allogeneic transplant; Discharge status; Quality of life
2.  Patient-Initiated Discharge Needs of Allogeneic Transplant Patients 
Clinical journal of oncology nursing  2012;16(4):E142-E149.
doi:10.1188/12.CJON.E142-E149
PMCID: PMC3784345  PMID: 22842699
3.  Challenges and Strategies for Recruitment and Retention of Vulnerable Research Participants: Promoting the Benefits of Participation 
Applied Nursing Research  2010;25(2):101-107.
The purpose of this paper is to describe recruitment and retention of vulnerable hematopoetic cell transplant patients participating in a longitudinal intervention study. Utilizing Swanson’s Theory of Caring Model nurse researchers facilitated patients’ visualization of how study participation could enable them to share their experience and further clinical insights.
doi:10.1016/j.apnr.2010.02.003
PMCID: PMC3029498  PMID: 20974092
4.  Informal Caregiving in HCT Patients 
Purpose
Hematopoietic cell transplant patients are among the most vulnerable and acutely ill cancer populations (Bevans, Mitchell, & Marden, 2008). The responsibility of caring for the daily physical and psychosocial needs of these patients after transplant is placed mostly on family caregivers(Williams, 2007). The purpose of this descriptive correlational research study was to describe caregiving experiences of 56 caregivers of HCT patients 3–12 months following transplant.
Methods & Sample
Patients and caregivers were recruited from two west coast regional transplant programs in the United States. Variables studied were: relationship quality, rewards of caregiving, predictability, role strain, patient function, caregiving activities, and caregiver quality of life (QOL).
Key Results
Results indicated that all areas of role strain are significantly negatively correlated with caregiver's QOL. Predictability was negatively associated with problem solving and emotional strain indicating that as the level of predictability of the situation decreases, caregiver strain and problem solving increase. Predictability was positively correlated to caregiver QOL indicating that as the situation is more predictable caregiver QOL increases. Emotional strain, problem-solving strain, and usual care strain were significantly positively related, indicating that emotional strain and problem solving strain increased together. As usual care strain increased, so did problem-solving strain and emotional strain.
Conclusions
Suggestions for interventions include assessing and responding to caregiver issues such as emotional strain, problem-solving strain, usual care strain, unpredictability, and QOL. Examples of caregiver-focused interventions include providing timely appropriate information about these caregiver concerns including elements that make the caregiving situation predictable, and incorporating best practices for preventing and minimizing
doi:10.1016/j.ejon.2011.01.007
PMCID: PMC3112308  PMID: 21306952
HCT Transplant; Caregivers; Predictability; Role Strain; Quality of Life
5.  Informal Caregivers of Hematopoietic Cell Transplant Patients: A Review and Recommendations for Interventions and Research 
Cancer nursing  2011;34(6):E13-E21.
Background
Informal caregivers (IC) for medically fragile hematopoietic cell transplant (HCT) patients are a vital unrecognized population supporting the transplant patient along the illness continuum. The long transplant recovery period shifts a greater burden of care to the patient’s IC. Assessment of HCT caregiver quality of life and health status is critical to implementation of timely intervention and support.
Methods
A literature search using several search strategies covering 1980 to 2010 identified studies on ICs of hematopoietic cell transplant patients. These studies were summarized within the caregiver concepts of quality of life, role, and resources. Findings of this review were used to create recommended interventions and identify implications for further research.
Results
Although limited, research on ICs of hematopoietic call transplant patients provides beginning evidence for clinical interventions to support this caregiver population. Interventions created focus on Education, Psychosocial Support, and Self Care.
Conclusions
Although limited randomized trials of interventions have been reported, descriptive studies provide evidence for creating intervention content that addresses needs of ICs of hematopoietic cell transplant patients. Testing of these interventions and additional areas of research are identified.
Implications for Practice
Beginning descriptive evidence provides the basis for interventions for ICs of hematopoietic cell transplant patients. These interventions support caregiver quality of life and role implementation depending on individual caregivers’ resources and needs. Further evaluation and clinical research is needed.
doi:10.1097/NCC.0b013e31820a592d
PMCID: PMC3123439  PMID: 21242762
IC; hematopoietic cell transplant; hematologic cancers; quality of life
6.  Creating a Palliative/Educational Session for HCT Patients at Relapse 
doi:10.1188/11.CJON.411-417
PMCID: PMC3246399  PMID: 21810574
7.  Psychosocial Care for Adolescent and Young Adult Hematopoietic Cell Transplant Patients 
Journal of Psychosocial Oncology  2011;29(4):394-414.
Psychological issues following Hematopoietic Cell Transplantation (HCT) are unfortunately common. Literature specific to the transplant experience for the needs of adolescents and young adults (AYA) is lacking. The purpose of this article is to 1) describe the allogeneic transplant experience for AYA transplant patients during the first year following transplantation including demographic and treatment characteristics, 2) present AYA data obtained during and following a six-part post transplant discharge study, 3) illustrate typical AYA experiences using case studies and 4) propose AYA intervention strategies within Erickson’s Stages of Psychosocial Development. A Quality of Life (QOL) model provided both the research conceptual framework, and the content analysis framework for the qualitative research. Themes that emerged within each domain were the following: sexuality/fertility, fatigue, depression/poor coping/habits, adherence issues, use of technology, dependency issues, changes in roles/relationships, issues with school/education, financial issues, family problems/issues, miscellaneous, religion/spirituality, fear of future, uncertainty, life, death, more life appreciation. These data guide us for providing targeted interventions for the needs of this AYA population. This paper has presented literature and developmental theory, qualitative and qualitative data from an intervention study, and clinical cases in order to propose a developmental treatment model for AYA transplant patients. A coordinated and multidisciplinary approach is needed for the HCT patient who is an AYA.
PMCID: PMC3268701  PMID: 21966725
8.  Psychological Consequences of Hematopoieitc Stem Cell Transplant 
Seminars in oncology nursing  2009;25(2):139-150.
Objectives
To address the psychological impact of the transplant on quality of life including physical, psychological, social and spiritual for the patient and caregiver and to discuss the nurse’s emotional labor of caring and compassion fatigue for such an intense vulnerable population.
Data Sources
Psychological transplant studies, peer review journals, and textbooks.
Conclusions
The psychological impact after an experience of a transplant can leave an indelible impression on the patient, caregiver and nurse.
Implications for Nursing Practice
Suggestions are made for assessment and management of various potential psychological issues for the three mentioned populations. With these issues being better understood, nurses can actively lessen psychological morbidity.
doi:10.1016/j.soncn.2009.03.008
PMCID: PMC3105969  PMID: 19411017
Hematopoietic stem cell transplantation (HSCT); Psychological; Quality of Life (QOL); Caregiver; Compassion Fatigue
9.  APN Core Competencies: A Framework for Developing and Testing an APN Discharge Intervention 
Clinical nurse specialist CNS  2008;22(5):218-225.
The purpose of this paper is to describe evidenced-based interventions as implemented by Advanced Practice Nurses (APN) conducting intervention research with a vulnerable population of blood and marrow transplant patients. In addition, each of the six core competencies of the APN role identified by Hamric are outlined and applied using a patient case study. These competencies are the following: direct clinical practice, expert coaching and advice, consultation, research skills, clinical and professional leadership, collaboration, and ethical decision-making.1 This article chronicles a typical patient's journey through a post hospital discharge nursing research study involving APNs as “intervention nurses” and discusses the various aspects of the APN core competencies throughout the process.
doi:10.1097/01.NUR.0000325366.15927.2d
PMCID: PMC3097039  PMID: 18753879
Advanced Practice Nurse; Transplant; Intervention research

Results 1-9 (9)