Dataset Information

Social, psychological and existential well-being in patients with glioma and their caregivers: a qualitative study.

ABSTRACT:

Background

Cerebral glioma has a devastating impact on cognitive, physical, social, psychological and spiritual well-being. We sought to understand the multidimensional experience of patients with this form of cancer as they progressed from receiving a diagnosis to the terminal phase of the disease.

Methods

We recruited patients with a suspected brain tumour from a tertiary referral centre in the United Kingdom. We interviewed patients and their caregivers at key stages of the illness: before receiving a formal diagnosis, at the start of initial treatment, after initial treatment was completed and at six months' follow-up; caregivers were also interviewed postbereavement. We interviewed the patients' general practitioners once, after treatment had been completed. We transcribed the interviews and analyzed them thematically using the constant comparative method of a grounded theory approach.

Results

We conducted in-depth interviews with 26 patients, 23 of their relatives and 19 general practitioners. We saw evidence of physical, social, psychological and existential distress even before a diagnosis was confirmed. Social decline followed a similar trajectory to that of physical decline, whereas psychological and existential distress were typically acute around diagnosis and again after initial treatment. Each patient's individual course varied according to other factors including the availability of support and individual and family resources (e.g., personal resilience and emotional support).

Interpretation

There are practical ways that clinicians can care for patients with glioma and their caregivers, starting from before a diagnosis is confirmed. Understanding the trajectories of physical, social, psychological and existential well-being for these patients allows health care professionals to predict their patients' likely needs so they can provide appropriate support and sensitive and effective communication.

SUBMITTER: Cavers D

PROVIDER: S-EPMC3328542 | biostudies-literature | 2012 Apr

REPOSITORIES: biostudies-literature

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Publications

Social, psychological and existential well-being in patients with glioma and their caregivers: a qualitative study.

Cavers Debbie D Hacking Belinda B Erridge Sara E SE Kendall Marilyn M Morris Paul G PG Murray Scott A SA

CMAJ : Canadian Medical Association journal = journal de l'Association medicale canadienne 20120319 7

<h4>Background</h4>Cerebral glioma has a devastating impact on cognitive, physical, social, psychological and spiritual well-being. We sought to understand the multidimensional experience of patients with this form of cancer as they progressed from receiving a diagnosis to the terminal phase of the disease.<h4>Methods</h4>We recruited patients with a suspected brain tumour from a tertiary referral centre in the United Kingdom. We interviewed patients and their caregivers at key stages of the ill ...[more]

PMID: 22431898

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Project description:Background: The dearth of data on adolescents highlighted in the UN's data disaggregation against the agenda 'no one left behind' calls for research on 'the second decade'. Moreover, India is a country with the world's largest adolescent population, and as such, studies and policies for developing competencies of adolescents are crucial to the country's development; interventions instilling confidence to aspire to a better future in underprivileged adolescents are vital to mitigate inequity. Methods: This intervention study adopted a quasi-experimental design to measure the effectiveness of social groupwork in raising the psychological well-being of adolescents in child sponsorship programs in Kerala. Forty adolescents from a Child Sponsorship Program (CSP) center in Kochi were recruited for the study. Those suggested by the CSP center considering their poor academic performance and behavior problems were allocated to the intervention group and the rest to the comparison group. The intervention was designed in response to the information garnered through a preliminary study and administered to the intervention group (n=20). We conducted pre-test and post-test for both the intervention group and comparison group (n=20). Results: Comparison between pre- and post-measurements carried out using paired sample t-test for the intervention group and comparison group separately gave a p-value of <0.05 for the intervention group and >0.05 for the comparison group. Thus, it was proved that psychological well-being of participants in the intervention group was raised significantly due to the social group work intervention. Conclusions: Applying refined granularity, this research adds data specifically on adolescents enrolled in child sponsorship programs and sets a blueprint for social groupwork to improve their psychological well-being. Proposing a conceptual framework for child sponsorship programs, this study recommends further research in all aspects of its functioning, and interventions at group, family, and community levels, for the well-being and empowerment of marginalized adolescents.

Project description:BACKGROUND:The rapid increase in the number of elderly family caregivers underlines the need for new support systems. Internet-delivered psychological interventions are a potential approach, as they are easy to access for family caregivers who are often homebound with their care recipient. This study examines the relative effectiveness of an internet-based acceptance and commitment therapy (ACT) intervention or a standardized institutional rehabilitation program, first, in reducing depressive symptoms, and second, in improving the well-being and quality of life of elderly family caregivers compared to a control group receiving support from voluntary family caregiver associations. METHODS:156 family caregivers aged 60 or more are studied in a quasi-experimental study design that compares three groups of family caregivers (Group 1; n = 65: a guided 12-week web-based intervention; Group 2, n = 52: a standardized institutional rehabilitation program in a rehabilitation center; Group 3, n = 39: support provided by voluntary caregiver associations). Data collection is performed at three time-points: pre-measurement and at 4 months and 10 months thereafter. Caregivers' depressive symptoms as a primary outcome, and perceived burden, anxiety, quality of life, sense of coherence, psychological flexibility, thought suppression, and personality as secondary outcomes are measured using validated self-report questionnaires. Physical performance and user experiences are also investigated. Between-group differences in the effects of the interventions are examined using multiple-group modeling techniques, and effect-size calculations. DISCUSSION:The study will compare the effectiveness of a novel web-based program in reducing depressive symptoms and improving the psychological well-being of elderly family caregivers, or a standardized institutional rehabilitation program representing usual care and a control group receiving support offered by voluntary caregiver associations. The results will expand the knowledge base of clinicians and provide evidence on effective strategies to improve the mental health and overall quality of life of elderly family caregivers. TRIAL REGISTRATION:The study was retrospectively registered in www.clinicaltrials.gov (ClinicalTrials.gov Identifier: NCT03391596 on January 4, 2018.

Dataset Information

Social, psychological and existential well-being in patients with glioma and their caregivers: a qualitative study.

Background

Methods

Results

Interpretation

Publications

Social, psychological and existential well-being in patients with glioma and their caregivers: a qualitative study.

Similar Datasets

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