Patients’ experiences of different care settings and a new life situation after allogeneic haematopoietic stem cell transplantation

Abstract

Over the past 20 years, considerable healthcare resources have shifted from an inpatient to an outpatient setting. To be in an outpatient setting or at home after allogeneic haematopoietic stem cell transplantation (allo-HSCT) has been shown to be medically safe and beneficial to the patient. In this study we describe patients' experiences of different care settings (hospital or home) and a new life situation during the acute post-transplant phase after HSCT. Semi-structured interviews were conducted with 15 patients (six women and nine men) 29-120 days after HSCT. An inductive qualitative content analysis was performed to analyse the data. The analysis resulted in four categories: To be in a safe place, To have a supportive network, My way of taking control, and My uncertain return to normality. The findings showed that patients undergoing HSCT felt medically safe regardless of the care setting. The importance of a supportive network (i.e. the healthcare team, family and friends) was evident for all patients. Both emotional and problem-focused strategies were used to cope with an uncertain future.Being at home had some positive advantages, including freedom, having the potential for more physical activity, and being with family members. The study highlights some key areas thought to provide more personalised care after HSCT. K E Y W O R D Sacute post-transplant phase, allogeneic stem cell transplantation, content analysis, home care, hospital care, patient experiences | INTRODUCTIONAllogeneic haematopoietic stem cell transplantation (HSCT) may offer an option for cure and prolonged survival for many patients suffering from haematological malignancies. Nevertheless, it is one of the most intensive forms of cancer treatment (Gyurkocza, Rezvani, & Storb, 2010).During the past decade, the toxicity and mortality associated with HSCT have been reduced due to several improvements (e.g. the first 3 months after HSCT and mainly affects the skin, the liver, and the gastrointestinal tract. Acute GVHD is significantly associated with increased morbidity and mortality after HSCT (Gyurkocza et al., 2010).When engraftment occurs, patients are discharged from the transplantation unit; during the rest of the acute post-transplant phase (i.e. the first 3 months after HSCT), the patient continues with weekly follow-up (i.e. two to three times per week) in an outpatient setting.During this phase, psychological distress and negative moods due to anxiety and depression are common (Pidala, Anasetti, & Jim, 2009).The risk for GVHD and the symptom burden makes supportive care and surveillance as well as reducing the burden of symptoms important treatment goals for healthcare professionals in the post-transplant period (Grant, Cooke, Bhatia, & Forman, 2005).In HSCT treatment in particular and in cancer treatment in general there has been a major shift over the past decades from care in a hospital setting to treatment and care for selected patients in outpatient settings, including the patient's home. The rationale underlying this shift ...

What haematopoietic stem cell transplant patients think about health and oral care: A qualitative study in a Brazilian health service

“…This study was conducted using a conceptual qualitative approach, structured around the concept of oral health and dental treatment before, during and after haematopoietic stem cell transplantation (Bardin, 2001;Bergkvist, Fossum, Johansson, Mattsson, & Larsen, 2017;Daly et al, 2007;Graneheim & Lundman, 2004). The study was developed in the School of Dentistry of the Universidade Federal de Minas Gerais (UFMG), which, since 2002, has been providing dental care to individuals in the pre-and post-transplant stages who have been referred by the University Hospital-UFMG.…”

“…Content analysis begins with a superficial reading of the statements and then moves on to a deeper analysis in the material. Exhaustive readings of the transcribed material were conducted, which made it possible to identify the thematic categories and units of meaning that provided the foundation for the interpretation of the data and the construction of the results (Bardin, 2001;Bergkvist et al, 2017;Graneheim & Lundman, 2004).…”

“…Tables were constructed to organise and group the interviewees' statements according to categories, thus making it possible to extract excerpts from the reported material (Bardin, 2001;Bergkvist et al, 2017;Graneheim & Lundman, 2004). Beginning with the key terms of "oral health" and "pre-and post-transplant of haematopoietic stem cells," this study illustrated the perceptions of the haematopoietic stem cell transplant patients about oral health, including what is necessary for good oral health, and the value of dental treatment in the pre-and post-transplant stages.…”

Is it possible to increase the amount of physical activity in patients isolated due to hematopoietic stem cell transplantation using a nursing intervention? A feasibility study

“…4 , 5 Patients undergoing allogeneic HSCT usually require longer hospital stays than those undergoing autologous HSCT, due to more severe treatment-related complications. 6–8 Some patients undergoing autologous HSCT may spend their isolation period in an outpatient setting but are admitted to inpatient care if they suffer severe side effects such as infections, nutrition issues or if they are in need of more help for other reasons.…”

Is it possible to increase the amount of physical activity in patients isolated due to stem cell transplantation?

“…During isolation, patients are prone to suffer from nausea, mucositis, pain, fever, fatigue, and psychological distress related to the treatment and the isolation; the risk of inactivity is substantial [1,4]. Patients undergoing allogeneic HSCT usually require longer hospital stays than those undergoing autologous HSCT, due to more severe treatmentrelated complications [5][6][7]. Most patients planned for autologous HSCT are encouraged to spend their isolation at home or in apartments offered by the department (outpatients).…”