Barriers to psychological care among primary caregivers of children undergoing hematopoietic stem cell transplantation (original) (raw)
Related papers
2014
Caregivers are known to experience increased morbidity when compared to noncaregivers. Does an intervention targeting caregiver distress affect their health care utilization? One hundred forty-eight caregivers of allogeneic hematopoietic stem cell transplant patients were randomized to treatment as usual (TAU) or a psychoeducation, paced respiration, and relaxation (PEPRR) intervention. Assessments of caregivers' service utilization were collected at baseline and 1, 3, and 6 months post-transplant. During the first 30 days after patient transplant, caregiver medical and mental health professional service use decreased while support group attendance peaked. Mixed model regressions showed a significant decrease in mental health service use by the PEPRR group (P=0.001). At six months caregivers in TAU had predicted marginal probabilities of mental health services utilization over 10 times as high as caregivers in PEPRR (18.1% vs 1.5%). Groups failed to differ in medical service (P=0.861) or support group (P=0.067) use. We can conclude that participation in PEPRR compared to TAU was associated with reduced mental health service utilization. Caregiver psychosocial support services are critical to improve caregiver outcomes.
Journal of Pediatric Oncology Nursing, 2009
Hematopoietic stem cell transplantation (HSCT) is used to eradicate disease and restore normal hematopoietic, immunologic, and/or metabolic functioning. HSCT is a complex treatment that is physiologically and psychologically demanding on the recipient, caregiver, and family. The purpose of this study was to identify needs and resources of family caregivers of pediatric HSCT recipients during the first year after transplant. Parental caregivers (n = 161) completed an online survey. The most cited sources of information were the HSCT team (87.7%), books and other print materials (83.1%), and the Internet (81.5%). However, more than half of the respondents reported that finding resources and services was a problem. More than half identified managing the emotional and social impact of the transplant on their child, posttransplant and follow-up care, practical strategies for caregiving, maintaining the family, and taking care of themselves during this first year as important topics to address. Adequately and regularly assessing caregiver and family needs and providing resources to meet those needs, especially during transitions in care, are important components of transplant care.
Adjustment in Parents of Children Undergoing Stem Cell Transplantation
Biology of Blood and Marrow Transplantation, 2014
Pediatric stem cell transplantation (SCT) is a demanding procedure for children and parents. Interventions to promote positive adjustment of parents in this setting are needed. A total of 171 patient-parent dyads from 4 sites received 1 of 3 interventions to reduce SCT-related distress: a child intervention with massage and humor therapy, an identical child intervention plus a parent intervention with massage and relaxation/imagery, or standard care. Parents completed weekly self-report measures of distress and positive affect during the acute phase of treatment (weeks À1 through þ6); and measures of depression, posttraumatic stress (PTSD), and benefit finding at baseline and week þ24. No significant differences across treatment arms were observed on repeated measures of parental distress. There was a marginally significant effect of the child intervention on parental positive affect. Over time, parental distress decreased significantly and positive affect increased significantly in all groups. Similarly, there were no significant intervention effects on the global adjustment outcomes of depression, PTSD, and benefit finding. However, reports of depression and PTSD decreased significantly and reports of benefit finding increased significantly from baseline to week þ24 for all groups. Across all study arms, parent adjustment improved over time, suggesting that parents demonstrate a transient period of moderately elevated distress at the time of their child's admission for transplantation, followed by rapid improved to normative levels of adjustment. Similar to results previously reported for their children, these parents appear resilient to the challenges of transplantation.
Bone Marrow Transplantation, 2015
Caregivers of patients receiving allogeneic hematopoietic stem cell transplants (allo-HSCT) serve a pivotal role in patient care but experience high stress, anxiety and depression as a result. We theorized that stress management adapted for allo-HSCT caregivers would reduce distress compared with treatment as usual (TAU). Of 267 consecutive caregivers of allo-HSCT patients approached, 148 (mean = 53.5 years, 75.7% female) were randomized to either psychosocial intervention (i = 74) or TAU (n = 74). Eight one-onone stress management sessions delivered across the 100-day post-transplant period focused on understanding stress, changing role(s) as caregiver, cognitive behavioral stress management, pacing respiration and identifying social support. Primary outcomes included perceived stress (psychological) and salivary cortisol awakening response (CAR) (physiological). Randomized groups were not statistically different at baseline. Mixed models analysis of covariance (intent-to-treat) showed that intervention was associated with significantly lower caregiver stress 3 months post transplant (mean = 20.0, 95% confidence interval (95% CI) = 17.9-22.0) compared with TAU (mean = 23.0, 95% CI = 21.0-25.0) with an effect size (ES) of 0.39 (P = 0.039). Secondary psychological outcomes, including depression and anxiety, were significantly reduced with ESs of 0.46 and 0.66, respectively. Caregiver CAR did not differ from non-caregiving controls at baseline and was unchanged by intervention. Despite significant caregiving burden, this psychosocial intervention significantly mitigated distress in allo-HSCT caregivers.
Care performed by family caregivers of children submitted to hematopoietic stem cell transplantation
Revista Latino-americana De Enfermagem, 2019
Care performed by family caregivers of children submitted to hematopoietic stem cell transplantation* Objective: to know the care provided by family caregivers of children submitted to hematopoietic stem cell transplantation. Method: the Grounded Theory was used as methodology. The study comprised four sample groups, comprising 36 caregivers. Data were collected by semi-structured interviews and analyzed according to the coding proposed by Strauss and Corbin in three phases: open, axial and selective. Results: eight propositions were identified for the care provided to the child in the researched context, namely administering medications; attention to cleaning issues; care with water and food intake; care with the body; experiencing protective isolation; addressing the child's need for emotional support; addressing the child's self-care; and facing complications. Conclusion: the different aspects in which the caregiver acts in the care of the child were understood. Such care equips the health team to elaborate measures for guidance and preparation of home care that are effective and directed to the needs of the patient and their family. The understanding of the care that they accomplish enables the caregiver a greater understanding of their role, as well as of the decisions they will make by their being under treatment.
Frontiers in Psychology, 2017
Background: Data about psychosocial sequelae of childhood Hematopoietic Stem Cell Transplantation (HSCT) are limited and the association with a specific donor type or other medical factors is largely unknown (Chang et al., 2012). The aim of the present study was to compare the psychological aspects of pediatric HSCT survivors with healthy peers. A secondary aim was to detect whether parents and children differed in the perception of mental health status. The influence of medical factors on psychological status was also examined. Method: Thirty seven HSCT survivors (23 males) with a mean age of 14.4 years (SD = 3.03; range 8.16-18.33) were recruited. Twenty-six patients underwent an allogenic HSCT (matched unrelated donor, n = 20; matched sibling donor, n = 6) and 11 patients received an autologous HSCT. The children psychological aspects were assessed using the Youth Self Report (YSR) (Achenbach and Rescorla, 2001) and compared to a group of matched healthy peers. At the same time, parents were requested to complete the Child Behavior Checklist 6-18 (Achenbach and Rescorla, 2001). Medical and socio-demographic data were also collected. Results: HSCT survivors reported significantly higher levels of somatic complains (t 27 = 3.14; p = 0.004; mean = 3.1) when compared to healthy peers (mean = 1.5). The parent CBCL scores on "child total competence" exceeded the normative clinical cutoff in 48.6% cases. Inter-rater agreement between parent and patient reports was present only in three scales: total competence score (K = 0.06, p = 0.002), somatic complaints (K = 0.21, p = 0.003) and attention problems (k = 0.13; p = 0.02). According to Ancova models, internalizing problems were more frequent in HSCT from family donors (F 2 = 3.13; p = 0.06) or in the presence of acute complications (F 1 = 11.95; p = 0.003). Zanato et al. Mental Health after Childhood HSCT Conclusion: In contrast to the perception of parents, pediatric HSCT survivors reported good psychological health. However, they complained about more somatic problems as compared with healthy peers. Medical aspects such as donor source and the presence of acute complications should be taken into consideration for the psychological approach in order to improve pediatric HSCT survivor care.
Journal of Pediatric Psychology, 2016
Objective To examine the trajectories of caregiver psychological responses in the year following their child's hematopoetic stem cell transplant (HSCT), and whether cognitive and social processing strategies differentiated between trajectories. Method One hundred and eight caregivers randomized to the control condition of a cognitive-behavioral intervention study completed measures of distress, coping, and social support at baseline, 1 month, 6 months, and 1 year post HSCT of their child. Results The majority reported moderate or low anxiety, depression, or distress that decreased over time, but a small group demonstrated high anxiety, depression, or distress that persisted or increased over time. Maladaptive coping was highest among caregivers in the highpersistent distress subgroup compared with the moderate-decreasing and low-stable groups. Adaptive coping was minimally associated with trajectory subgroups. Conclusions Screening HSCT caregivers for distress and maladaptive coping may be useful in identifying caregivers likely to experience persistently high distress who may benefit from psychological intervention.