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: 2.79). 03/2011; 38(2):149-55. DOI: 10.1188/11.ONF.149-155
Source: PubMed


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.

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Available from: Barbara Given, Oct 01, 2015
    • "Illness management requires knowledge, vigilance, advocacy, and balance (of parental work and the burdens of treatment) (Kelly & Kelly, 2013), which may be fulfilling for the caregiver but may take a toll on them (Xu et al., 2012). In addition, as family members transition to the role of caregiver for adults with brain tumors, social support from family and friends is seen as vital to the emotional health of the caregiver (Hricik et al., 2011). While identifying, accessing, and coordinating resources, caregivers can simultaneously experience positive and negative changes. "
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    ABSTRACT: To examine the daily maternal caregiving demands for adolescent and young adult survivors of pediatric brain tumors who live with their families. . A secondary analysis was conducted on interview data gathered during a large mixed-methods study that focused on perceived maternal caregiver competency and survivor health-related quality of life. . Home interviews. . A purposive sample of 46 maternal caregivers was selected from participants in the larger study. . Semistructured interviews were conducted with mothers. A directed content analysis was informed by Sullivan-Bolyai's framework describing the components of primary caregiving. . Caregiving demands. . Data regarding four main categories of maternal daily caregiving demands were identified from 25 of the 46 interviews. Potential day-to-day management tasks or demands of mothers of adolescent and young adult survivors of pediatric brain tumors were identified. . The major demands of caregiving are similar to those for children with other chronic conditions, with the addition of assisting with everyday responsibilities and fostering psychosocial health. .
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    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.
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