Changes in Caregiver Perceptions Over Time in Response to Providing Care for a Loved One With a Primary Malignant Brain Tumor

School of Nursing, University of Pittsburgh, Pennsylvania, USA.
Oncology Nursing Forum (Impact Factor: 1.91). 03/2011; 38(2):149-55. DOI: 10.1188/11.ONF.149-155
Source: PubMed

ABSTRACT To examine how family members of patients with a primary malignant brain tumor transition into the caregiver role and how their perceptions of this transition change over time.
Descriptive, qualitative.
Neurosurgery and neuro-oncology clinics of a regional medical center.
10 family caregivers of patients with a primary malignant brain tumor.
A series of 11 open-ended questions addressing various aspects of the care situation were administered to each caregiver. The same questions were asked at baseline (within one month of the patient's diagnosis) and four months later. Content analysis was performed to identify themes among interviews.
Patient changes, caregiver adjustments, and accessing support.
Caregivers described difficulties stemming from the patient's tumor-related dysfunction and changes in their familial, occupational, and social roles. Support from family and friends was vital to caregivers' emotional health, but shock and fear were evident in all interviews. Becoming subsumed in the care situation was described as enmeshment. Caregivers reported difficulty in communicating with healthcare providers. When looking at change over time, three major themes emerged: Patient Changes: The New Normal; Caregiver Adjustments; and Accessing Support.
Caregivers require support in handling neurologic and physical sequelae, transitioning into new roles, and avoiding becoming enmeshed in the care situation.
This study underlines the importance of continuing research in this area to provide the necessary interventions that will assist caregivers and provide support throughout their loved one's disease trajectory.

  • Source
    [Show abstract] [Hide abstract]
    ABSTRACT: To identify changes in positive aspects of care (PAC) from the time of diagnosis to four months following the diagnosis in family caregivers of care recipients with primary malignant brain tumors. Longitudinal. Dyads were recruited from neurosurgery clinics in Pittsburgh, PA, at the time of care recipients' diagnosis with a primary malignant brain tumor. A second data collection took place four months following the diagnosis.Sample: 89 caregiver and care recipient dyads. Paired t tests were used to examine change in PAC, univariate analyses were used to determine predictors of PAC at four months, Mann-Whitney U tests and t tests were used to examine associations between categorical predictor variables and PAC at four months, and univariate linear regressions were used to examine associations between continuous predictors and PAC at four months. The impact of sociodemographic factors, caregiver-perceived social support, mastery, neuroticism, and marital satisfaction on PAC. Caregivers' PAC scores during the first four months following diagnosis appeared to remain stable over time. Significant differences were found between the care recipient reasoning domain group at diagnosis and PAC score. Care recipients who scored below average were associated with caregivers with higher PAC scores. Caregiver PAC at four months following diagnosis was significantly predicted by care recipient reasoning and caregiver social support. PAC scores appear to remain stable over time, although levels of PAC may be related to care recipients' level of functioning. Future research should focus on the development of interventions for caregivers who report low levels of PAC at the time of diagnosis in an attempt to help these individuals identify PAC in their caregiving situation. Findings have clinical and research implications. Clinicians may be able to better identify caregivers who are at risk for negative outcomes by understanding the risks faced by caregivers of patients with milder symptoms in addition to those caring for more profoundly affected care recipients.
    Oncology Nursing Forum 05/2012; 39(3):E226-32. DOI:10.1188/12.ONF.E226-E232 · 1.91 Impact Factor
  • Source
    [Show abstract] [Hide abstract]
    ABSTRACT: BACKGROUND:: Caregivers of oral cavity cancer patients report stress during caregiving time. OBJECTIVE:: This study aimed to examine changes in social support and predictors in caregivers of oral cavity cancer patients over the 3 months after patients' first discharge. METHODS:: This was a prospective longitudinal study. Caregivers of oral cavity cancer patients with planned discharge were recruited from inpatient wards and the outpatient department at a major medical center in Taiwan. Caregivers' needs and satisfaction with available social support were assessed at 4 time points: before discharge and at 1 week, 1 month, and 3 months after the first discharge. The generalized estimating equation was used to determine predictive factors of social support. RESULTS:: Caregivers had mild-to- moderate levels of needs and were satisfied with available social support during the first 3 months after discharge. The peak for both overall and individual needs of social support was before discharge. Caregivers overall and individual satisfaction with social support peaked at 3 months after discharge. Spouse caregivers had greater overall needs for social support. Caregivers with longer caregiving time were associated with dissatisfaction during the first 3 months after discharge. CONCLUSIONS:: Caregivers of oral cavity cancer patients had unmet needs of social support, especially wife caregivers. IMPLICATIONS FOR PRACTICE:: A comprehensive assessment of caregiver needs and satisfaction with available social support is necessary to improve caregiving for oral cavity cancer patients and address the concerns of caregivers in a timely manner.
    Cancer Nursing 10/2012; DOI:10.1097/NCC.0b013e31826c79d0 · 1.93 Impact Factor
  • Source
    [Show abstract] [Hide abstract]
    ABSTRACT: The aim of this study was to determine the effect of problem-solving education on self-efficacy and distress in informal caregivers of allogeneic hematopoietic stem cell transplantation patients. Patient/caregiver teams attended three 1-hour problem-solving education sessions to help cope with problems during hematopoietic stem cell transplantation. Primary measures included the Cancer Self-Efficacy Scale-transplant and Brief Symptom Inventory-18. Active caregivers reported improvements in self-efficacy (p < 0.05) and distress (p < 0.01) post-problem-solving education; caregiver responders also reported better health outcomes such as fatigue. The effect of problem-solving education on self-efficacy and distress in hematopoietic stem cell transplantation caregivers supports its inclusion in future interventions to meet the multifaceted needs of this population.
    Journal of Health Psychology 03/2013; 19(5). DOI:10.1177/1359105313475902 · 1.88 Impact Factor