Comprometimento social de pacientes submetidos ao transplante de células-tronco hematopoéticas

Abstract

Objective: to evaluate the impairment of social and emotional domains of hospitalized patients undergoing hematopoietic stem cells transplantation. Method: an observational, longitudinal study with 25 participants evaluated in the period of pre-transplant, pancytopenia and pre-hospital discharge between September 2013 and September 2014, in a reference hospital for this treatment modality in Brazil. Two international instruments were used, both of which translated and adapted to Portuguese (Brazil): Quality of Life Questionnaire-Core 30 and Functional Assessment Cancer Therapy -Bone Marrow Transplantation. Results: patients have shown a statistically signifi cant decrease in the social domain, and stability of the emotional function along the course of treatment. Conclusion: hematopoietic stem cell transplantation changes the social function of patients with hematologic cancer during hospitalization stage. Thus, patients should receive guidance addressing the social domain in order that it can be less affected.

Luto antecipatório do cuidador familiar no transplante de células tronco-hematopoéticasYETICAS

“…O excerto de fala do participante Arnaldo mostra que, ao longo de sua experiência, o acompanhante tem que lidar não só com um ambiente novo, mas também com um espaço físico que se distancia do aconchego e da sensação de intimidade que se vivencia no lar, acrescido da perda de privacidade, uma vez que a equipe está sempre entrando e saindo sem a menor cerimônia dos quartos. Rocha et al (2016) mostraram que a rotina desses pacientes, assim como de seus acompanhantes, é abruptamente interrompida, o que ocasiona forte impacto psicossocial devido ao afastamento dos estudos, do emprego, do convívio doméstico e dos demais ambientes de socialização, entre outras perdas que inevitavelmente podem surgir nesse período turbulento da vida familiar.…”

“…Frequentemente ocorre uma desorganização total da unidade familiar (Rolland, 1998), sendo que nem sempre os acompanhantes do paciente estão preparados para enfrentar as novas e desafiadoras situações impostas pelo regime de isolamento protetor do TCTH (Matsubara et al, 2007). Rocha et al (2016) mostrou que a rotina dos pacientes, assim como dos acompanhantes, é abruptamente interrompida, ocasionando forte impacto psicossocial devido ao afastamento dos estudos, do emprego, do convívio familiar, entre outras perdas que podem surgir nesse período. As questões financeiras e de provimento das necessidades materiais da família passam a ser fatores determinantes na maioria dos casos, pois influenciam diretamente na qualidade de vida do paciente pós-hospitalização, na medida em que atenuam as condições de vulnerabilidade em comparação com aqueles que enfrentam dificuldades de subsistência.…”

Hematopoietic Stem Cell Transplantation Impact on Patients’ Perceived Quality of Life: A Longitudinal Study

“…Similarly, HSCT exposes patients to a potential decline in their quality of life [ 19 ], necessitating a comprehensive assessment of its impact across various dimensions, including its effects on caregivers and families [ 17 , 20 , 21 ]. Numerous studies have established a correlation between quality of life and clinical complications, underscoring the importance of systematic assessment and ongoing monitoring to inform appropriate decision making [ 21 , 22 ] and the adjustment of care strategies [ 22 , 23 , 24 ].…”

Post-Transplant Complications in Patients Undergoing Autologous Hematopoietic Cell Transplantation (HCT)—A Comparative Analysis of Home Care versus Hospitalized Patients

“…The results reported by the patient should be evaluated [16], and they should cover the different dimensions of the quality of life [16]. This assessment should be extended to caregivers and family members due to the impact of the process and hospitalization on family health [17][18][19]. The presence of clinical complications increases the effect of the transplant on the patient and families, so it is essential to detect the affectation through the assessment of people which allows for adequate clinical decisionmaking [9,20] and to provide specific interventions to increase care [9,21,22].…”

“…On the other hand, there has been a trend in recent years, not only for economic reasons but also for the effectiveness of the treatments, to transfer complex medical treatments to the home when possible, which triggered different initiatives to develop home transplants worldwide [30,31]. These studies assess other aspects, such as complications, drug use in hospitals and at home, and the impact of distance to the health centers [18,24,[32][33][34]. In our country, a pilot experience of home autologous hematopoietic cell transplantation (HCT) started in 2015 [34], following the lines of similar programs developed in Europe [35].…”