Experiences of the Relatives of Patients Undergoing Cranial Surgery for a Brain Tumor

Taştan, Sevinç; Köse, Gülşah; İyigün, Emine; Ayhan, Hatice; Coskun, Halise; Hatipoğlu, Sevgi

doi:10.1097/jnn.0b013e31820c94da

Cited by 7 publications

(14 citation statements)

References 13 publications

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“…"A surgery was conducted without any elucidation and upon obtaining a sign on a paper. Further, there was lack of support as to whom was to be approached" (Tastan 2011).…”

Section: Category 2: the Varying Information Needs Of Caregiversmentioning

confidence: 99%

The role of informal caregivers for patients with glioma: a systematic review and meta-synthesis of qualitative studies

Chen

Zhu

et al. 2021

Ann Transl Med

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Background: This study aimed to systematically review, appraise, and synthesize the current evidence on the experiences and needs encountered by informal caregiver of patients with glioma throughout the disease trajectory and to provide a set of practical implications for health professionals.Methods: Seven English databases and four Chinese databases were searched in this systematic review and meta-analysis. Additional manual searches were completed to identify primary studies, with the language limited by English and Chinese. The Joanna Briggs Institute (JBI) Critical Appraisal Checklist for Qualitative Research was used to appraise the methodological quality of each study. Results:The systematic review included 16 papers that yielded 71 findings and 6 categories. Finally, 2 synthesized findings were extracted: (I) role transition of caregivers for glioma patients throughout the disease trajectory; (II) support and information need by caregivers of glioma patients. Accordingly, there is a need to recognize the importance of permanent and tailored support for caregivers by providing accurate, practical, and evidence-based information.Discussion: This is the first attempt to systematically evaluate the breadth and quality of the literature concerning the experiences of caregivers with glioma patients. The results generated from the review may shed some light on problems encountered by glioma patients and their families. A limitation of this review is that in most selected studies, the reflexivity of interviewees is not addressed, which may influence the interpretation of the findings. Moreover, the selected studies were reported in English or Chinese, therefore, caution is needed in interpreting the results.

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“…"A surgery was conducted without any elucidation and upon obtaining a sign on a paper. Further, there was lack of support as to whom was to be approached" (Tastan 2011).…”

Section: Category 2: the Varying Information Needs Of Caregiversmentioning

confidence: 99%

The role of informal caregivers for patients with glioma: a systematic review and meta-synthesis of qualitative studies

Chen

Zhu

et al. 2021

Ann Transl Med

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“…The 20 studies that were included comprised 342 participants (207 women, 81 men and 54 not classified). The focus was on the following themes: the needs of the next of kin2 20–24; their overall experiences as next of kin10 25–27; coping and coping strategies28–30; postoperative caregiving31 32; being a next of kin in the palliative phase33 34; experienced support factors35; how the caregiving changed over time36 and factors influencing treatment choice in the palliative phase 37. Three of the studies were undertaken 6 months after diagnosis,27 30 31 36 and three in the patients’ palliative phase or postmortem 33 34 37.…”

Section: Resultsmentioning

confidence: 99%

“…This support included emotional support and assistance during patient care and treatment. 2 10 20-27 [29][30][31][32][33][34][35] Open access…”

Section: Metasummariesmentioning

confidence: 99%

Coping in the role as next of kin of a person with a brain tumour: a qualitative metasynthesis

Lien

Rohde

2022

BMJ Open

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ObjectiveBeing the next of kin of a person with a brain tumour is a stressful experience. For many, being a next of kin involves fear, insecurity and overwhelming responsibility. The purpose of this study was to identify and synthesise qualitative original studies that explore coping in the role as next of kin of a person with a brain tumour.MethodsA qualitative metasynthesis guided by Sandelowski and Barroso’s guidelines was used. The databases Medline, CHINAL and PsycINFO were searched for studies from January 2000 to 18 January 2022. Inclusion criteria were qualitative original studies that aimed to explore coping experience by the next of kin of a person with brain tumour. The next of kin had to be 18 years of age or older.ResultsOf a total of 1476 screened records data from 20 studies, including 342 participants (207 females, 81 males and 54 unclassified) were analysed into metasummaries and a metasynthesis. The metasynthesis revealed that the next of kin coping experiences were characterised by two main themes: (1) coping factors within the next of kin and as a support system, such as their personal characteristics, perceiving the role as meaningful, having a support system, and hope and religion; (2) coping strategies—control and proactivity, including regaining control, being proactive and acceptance.ConclusionNext of kin of patients with brain tumours used coping factors and coping strategies gathered within themselves and in their surroundings to handle the situation and their role. It is important that healthcare professionals suggest and facilitate these coping factors and strategies because this may reduce stress and make the role of next of kin more manageable.

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“…34 Although we chose to limit our search for BPC to glioma patients, our findings are similar to those reported from studies including all types of primary brain tumor patients (glioma, brain metastases, meningioma and other benign tumors). In 2 small studies, 13% to 16% of brain tumor patients had behavioral problems, 10,40 while in a large study, 34% of the patients experienced behavioral changes. 39 Moreover, 2 other studies of patients with various primary brain tumors found that 56% of caregivers had problems coping with the changes in patients' behavior, 14 and also that personality changes exacerbated stress of caregivers.…”

Section: Discussionmentioning

confidence: 98%

Prevalence of changes in personality and behavior in adult glioma patients: a systematic review

Zwinkels

Dirven

Vissers

et al. 2015

Neuro-Oncology Practice

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Background Gliomas are rare, with a dismal outcome and an obvious impact on quality of life, because of neurological, physical and cognitive problems, as well as personality and behavioral changes. These latter changes may affect the lives of both patients and their relatives in a profound way, but it is unclear how often this occurs and to what extent. Methods We performed a systematic review to determine the prevalence of changes in personality and behavior in glioma patients. Searches were conducted in PubMed/Medline, PsycINFO, Cochrane, CINAHL and Embase. Based on predetermined in- and exclusion criteria, papers were screened for eligibility. Information on the topics of interest were extracted from the full-text papers. Results The search yielded 9895 papers, of which 18 were found to be eligible; 9 qualitative and 9 quantitative studies. The reported prevalence rates of changes in personality and/or behavior varied from 8%–67% in glioma patients, and was 100% in a case series with bilateral gliomas. Moreover, these changes were associated with distress and a lower quality of life of patients as well as informal caregivers. Methods of measurement of personality and behavioral changes differed considerably, as did the description of these changes. Conclusion To determine the true prevalence of changes in behavior and personality, present but poorly labeled in the reported studies, prospective studies are needed using proper definitions of personality and behavioral changes and validated measurement tools. Ultimately, these findings may result in improved supportive care of both patients and caregivers, during the disease trajectory.

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Experiences of the Relatives of Patients Undergoing Cranial Surgery for a Brain Tumor

Cited by 7 publications

References 13 publications

The role of informal caregivers for patients with glioma: a systematic review and meta-synthesis of qualitative studies

The role of informal caregivers for patients with glioma: a systematic review and meta-synthesis of qualitative studies

Coping in the role as next of kin of a person with a brain tumour: a qualitative metasynthesis

Prevalence of changes in personality and behavior in adult glioma patients: a systematic review

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