Explaining Caregivers' Perceptions of Palliative Care Unmet Needs in Iranian Alzheimer's Patients: A Qualitative Study (original) (raw)
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Frontiers in Psychology, 2021
Introduction: Due to the long-term and progressive nature of Alzheimer's disease, these patients need caregivers who will be responsible for their long-term care and who may then experience an increasing burden related to the progressive disease course, so it is important to understand the experiences of caregivers. The aim of this study was to explain the experience of family caregivers regarding care of Alzheimer's patients. Methods: The present qualitative study employed a conventional content analysis approach and was conducted in Iran in 2020. This research was done through in-depth and semi-structured interviews with 11 qualified caregivers enrolled in a purposive sampling method. Interviews continued until data saturation. Data analysis was performed simultaneously with data collection. Interviews were recorded, transcribed and analyzed through Graneheim and Lundman style content analysis and data management was done with MAXQDA software. In order to achieve the accur...
Iranian Red Crescent medical journal, 2012
Due to the increase in the number of Alzheimer's patients in Iran and also the limitation of cultural knowledge about caring of these patients, this study was designed to explore the perceptions of Iranian caregivers about caring Alzheimer patients in the elderly care homes. A qualitative content analysis method was conducted on two elderly care homes of Shiraz/Iran, during 2009-2011. Fourteen key informants (10 women and 4 men, between 25-35 years of age), who had been working in elderly care homes caring for the elderly with Alzheimer disease for about 1-11 years (Mean=30 months) were selected by purposive sampling method. The caring experience and ability of transferring their experience to others were the main criteria for selection of the participants. They were participated in 2 focus groups and 4 interviews. Nearly, 800 initial codes were extracted and categorized into 3 groups of "multidimensional care", "going along with the patients" and "need ...
Problems Faced by Caregivers of Alzheimer’s Patients
Volume 36, Issue 3, 2021
Care giving is a difficult task especially when it involves physical or mental retardation, and it leaves marked negative impact on primary caregivers. Alzheimer is one such ailment where the patient is totally dependent on others for each bit of their life, so the care giving of Alzheimer patients become more burdensome. The aim of this research was to examine the burden and difficulties of caregivers dealing with Alzheimer's patient, especially those living at home. Case study method was employed for this research. Eight caregivers were selected purposively, and content analysis was used to examine their perspective regarding burden and challenges. In the assessment of content, the gathered qualitative information was analyzed in a deductive manner. The results of the analysis showed that caregivers face daily challenges in terms of physical and psychological health issues, social support and resources, family conflicts, crisis, and criticism. The outcomes further elaborated t...
International Journal of Environmental Research and Public Health, 2019
The purpose of this study was to identify, classify and analyze the perceived needs of caregivers of elderly people with dementia during the care process. A descriptive phenomenological qualitative study using seven focus groups was conducted in different primary health care centers in the province of Jaén (Spain) between July 2012 and February 2013. Eighty-two family caregivers who were caring for people with dementia in different stages of the disease were selected by purposeful maximum variation sampling. Data were analyzed and organized thematically, considering the semantic and pragmatic content and field notes. Two main categories of the perceived needs of caregivers were identified. The first was related to the management of caring for a relative with dementia, and the second was related to the management of the caregivers’ own care. Our findings support the provision of comprehensive interventions for the improvement of caregivers’ emotional health that encompass more than o...
Palliative medicine, 2016
People with dementia have been described as the 'disadvantaged dying' with poor end-of-life care. Towards the end of life, people with dementia cannot report on the care they receive. It is therefore important to talk to caregivers; however, few have explored the views about end-of-life care from the caregivers' perspective. The majority of research on family caregivers has focussed on the burden and psychological impact of caring for a relative with dementia. This study aimed to explore the views of family caregivers about quality end-of-life care for people with dementia. Qualitative study using in-depth interviews and analysed using thematic analysis. Purposive sampling from a third sector organisation's caregiver network was used to recruit 47 caregivers in England (2012-2013), consisting of (1) family caregivers of someone who had recently received a diagnosis of dementia, (2) family caregivers currently caring for someone with dementia and (3) bereaved family c...
Caregivers’ Knowledge of and Attitude towards Palliative Care in Iran
Asian Pacific Journal of Cancer Prevention
Background: Addressing the palliative care needs requires clinicians to have sufficient knowledge of and positive attitudes toward palliative care. The study aimed to determine nurses' and physicians' knowledge of and attitudes towards palliative care in Iran. Methods: This descriptive cross-sectional study was conducted in 2021 on 493 physicians and nurses, selected through convenience sampling. Three online questionnaires addressing caregivers' demographic and professional's questionnaire, Health Care Providers' Attitude toward PC Questionnaire, and Health Care Providers' Knowledge of PC Questionnaire were used. The data was analyzed in SPSS using correlational and descriptive statistics and regression analysis. Results: The mean score of attitude towards palliative care was 142.03 ± 11.35 and the mean score of palliative care knowledge, 19.47 ± 2.62. Considering the regression coefficients between these two mean scores (P-value = 0.001, b = 1.304), it can be inferred that knowledge is a good predictor of attitude. In addition, the mean scores of knowledge and attitude have a significant relationship with age, female gender, holding a master's or PhD degree, the need for formal education in the field of palliative care and the need to take a palliative care course. Conclusions: The present study showed that Iranian nurses and physicians have a moderate level of knowledge and attitude towards palliative care. It is necessary to take measures in order to improve knowledge and attitude by holding retraining courses, theoretical and clinical training sessions and relevant seminars in short term, and also by integrating related topics into nursing and medical curriculums in long term.
Living with and caring for patients with Alzheimer's disease in nursing homes
Journal of caring sciences, 2013
Many of the patients with Alzheimer disease are taken care of in nursing homes. However the literature on the experiences of Iranian formal caregivers of older adults with Alzheimer disease is scarce. This qualitative study explored the caring experiences of formal caregivers in nursing homes that can improve the quality of care and patient's quality of life. This qualitative study used the principles of descriptive content analysis to analyze these data. Our participants included 11 female and 3 male caregivers aged 25 to 38 years who were selected for interviewing based on a purposive sampling method. The data were analyzed with a content analysis method. Nearly 900 initial codes were extracted and categorized into 6 main themes including "managing difficult behaviors", "dependence on familial care", "continuum of different feelings", "care for a child", "living with the patients" and "not understanding the patients",...
F1000Research
Background: Globally, dementia is estimated to become more prevalent as the population is aging. Patients with dementia are demanding on the long-term care from their caregivers. In order to maintain their well-being and minimize the impacts of long-term care, caregivers need comprehensive and supportive health services. This study aimed to improve and redesign the current healthcare service by assessing the needs of Saudi dementia patients' caregivers using carers' needs assessment for dementia (CNA-D). Methods: Through a cross-sectional design and convenient sampling technique (non-probability Sampling), this study was carried out in two Saudi home care centers. The caregivers who fulfilled the inclusion criteria (n=276) were enrolled in the study and completed the interview questionnaire. Data collection lasted for two months (September and October 2022). A Chi-square test was performed to determine the statistical significance between participants' responses and the...
Applied Neuropsychology: Adult, 2020
Caregiving for dependent older adults with dementia has become an important public health issue. However, not much is known about the caregiver experience for caregivers of patients with dementia in Iran. This study was designed to examine the relationship between variables pertaining to primary caregivers and patients and the level of perceived caregiver burden. The participants of this cross-sectional study were 60 caregiver and care-recipient pairs presented to Rasoule Akram hospital and Brain and Cognition Clinic, in Tehran, Iran. A sociodemographic questionnaire, the Zarit Caregiver Burden Interview (ZBI), the General health questionnaire-28 (GHQ-28), the NEO Five-Factor Inventory (NEO-FFI), the Spiritual Well-Being Scale (SWBS), the Neuropsychiatric Inventory (NPI), and the Mini-Mental State Examination (MMSE) were used. Descriptive statistics, correlation coefficients, T-test, and multiple linear regression analyses were used in this study. Years of caregiving, hours of caregiving/week, total and subscale GHQ-28 scores, existential well-being subscale score on SWBS, and total NPI score were found to be significantly associated with the level of caregiving burden (p < 0.05). In addition, among the caregivers' personality traits, neuroticism and agreeableness predicted caregiver burden. Other sociodemographic factors and MMSE scores were not found to be significantly related to caregiver burden. A better understanding of the indicators of caregiver burden can help physicians, policy makers, and mental health managers to tailor the most appropriate preventative and remedial interventions for family caregivers.
Understanding the needs of caregivers of persons with dementia: a scoping review
International Psychogeriatrics
Background: The number of people living with dementia (PWD) is increasing worldwide, corresponding with an increasing number of caregivers for PWD. This study aims to identify and describe the literature surrounding the needs of caregivers of PWD and the solutions identified to meet these needs. Method: A literature search was performed in: PsycInfo, Medline, CINAHL, SCIELO and LILACS, January 2007–January 2018. Two independent reviewers evaluated 1,661 abstracts, and full-text screening was subsequently performed for 55 articles. The scoping review consisted of 31 studies, which were evaluated according to sociodemographic characteristics, methodological approach, and caregiver’s experiences, realities, and needs. To help extract and organize reported caregiver needs, we used the C.A.R.E. Tool as a guiding framework. Results: Thirty-one studies were identified. The most common needs were related to personal health (58% emotional health; 32% physical health) and receiving help from ...