Essential knowledge for family caregivers: a qualitative study

2013 ◽  
Vol 19 (8) ◽  
pp. 383-388 ◽  
Author(s):  
Jennifer K Angelo ◽  
Richard Egan ◽  
Kate Reid
Keyword(s):  
Qualitative Study ◽  
Family Caregivers ◽  
Essential Knowledge

scholarly journals Caring for a person with dementia during the COVID-19 pandemic: A qualitative study with family caregivers

2021 ◽  
pp. 1-36
Author(s):  
Sabrina Cipolletta ◽  
Benedetta Morandini ◽  
Silvia Caterina Maria Tomaino
Keyword(s):  
Qualitative Study ◽  
Family Caregivers ◽  
Person With Dementia

scholarly journals Family caregivers’ conceptualisation of quality end-of-life care for people with dementia: A qualitative study

2016 ◽  
Vol 31 (8) ◽  
pp. 726-733 ◽  
Author(s):  
Nathan Davies ◽  
Greta Rait ◽  
Laura Maio ◽  
Steve Iliffe
Keyword(s):  
Qualitative Study ◽  
End Of Life ◽  
Family Caregivers ◽  
End Of Life Care ◽  
Psychological Impact ◽  
Third Sector ◽  
Life Care ◽  
People With Dementia ◽  
Diagnosis Of Dementia ◽  
Bereaved Family

Background: 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. Aim: This study aimed to explore the views of family caregivers about quality end-of-life care for people with dementia. Design: Qualitative study using in-depth interviews and analysed using thematic analysis. Setting/participants: 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 caregivers. Results: Three over-arching themes were derived from the interviewees’ discourse, including maintaining the person within, fostering respect and dignity and showing compassion and kindness. Conclusion: End-of-life care for people with dementia does not differ from care throughout the dementia trajectory. Throughout the findings, there is an implicit underlying theme of conflict: conflict between family caregivers and an increasingly systematised service of care and conflict between family caregivers and professionals. This study has in particular demonstrated the importance of the psycho-social aspects of care, aligning with the holistic definition of palliative care.

Needs and Concerns of Lewy Body Disease Family Caregivers: A Qualitative Study

2021 ◽  
pp. 019394592110509
Author(s):  
Kelly E. Stacy ◽  
Joseph Perazzo ◽  
Rhonna Shatz ◽  
Tamilyn Bakas
Keyword(s):  
Content Analysis ◽  
Qualitative Study ◽  
Family Caregivers ◽  
Lewy Body ◽  
Assessment Tool ◽  
Lewy Body Disease ◽  
Analysis Approach ◽  
Convenience Sample ◽  
Caregiver Interventions ◽  
Disease Family

Lewy body disease (LBD) is a devastating condition with cognitive and physical deficits that pose a challenge to family caregivers. The purpose of this study was to identify the needs and concerns of family caregivers of persons with LBD. A convenience sample of LBD caregivers were interviewed regarding their caregiving needs, concerns, strategies, and advice. A content analysis approach was used to organize data into themes from an existing needs and concerns framework. Findings included the need for more information about the disease, strategies for managing LBD-related emotions and behaviors, support and assistance with physical and instrumental care, and strategies for managing one’s own personal responses to caregiving. Findings highlight the need for a Lewy body specific caregiver assessment tool and future caregiver interventions.

Experience of family caregivers of community-dwelling stroke survivors and risk of elder abuse: a qualitative study

2014 ◽  
Vol 16 (5) ◽  
pp. 276-293 ◽  
Author(s):  
Celia Chow ◽  
Agnes Tiwari
Keyword(s):  
Qualitative Study ◽  
Family Caregivers ◽  
Local Community ◽  
Service Providers ◽  
Elder Abuse ◽  
Community Dwelling ◽  
Stroke Survivors ◽  
Content Type ◽  
The Disabled ◽  
Personal Resilience

Purpose – The purpose of this paper is to explore the following questions. First, what are the experiences of family caregivers in caring for community-dwelling stroke survivors? Second, what services help or do not help the caregivers in managing their caregiving role? Design/methodology/approach – A qualitative study was conducted with a total of six focus group interviews with 29 stroke caregivers selected using convenience sampling in a local community centre. All interviews were recorded and transcribed for content analysis. Findings – The results pointed to three main themes working together to facilitate desirable outcomes in caregiving and prevent elder abuse: factors contributing to caregiver stress and factors that have a buffering effect on caregiver stress and unmet needs identified from caregivers’ experiences. Research limitations/implications – The authors found that there were a number of factors contributing to caregiver stress. The findings matched with the concept that caregiver stress should not be considered as the primary cause of elder abuse. Findings provided information for further research to investigate positive coping and adjustment for stroke survivors, caregivers and their families. Practical implications – Policy makers and service providers may consider specific policies and tailor-made services to enhance the effectiveness of current practice. The themes emerging from the study could be further reviewed in a longitudinal way to explore the cost-effectiveness, the outcomes and trajectory of interventional programmes. Social implications – Education would be essential to let the public understand caregivers’ difficulties and needs. Prevention of elder abuse may be approached with a range of risk factors for both perpetrating and being elder abuse victim. Originality/value – From the findings of the study, the authors found that there were service gaps within policy and interventions. Concrete suggestions for improving the public's attitude and public facilities/transport for the disabled were captured in the study. In addition to personal resilience, caregivers had a strong wish for a supportive environment and services that would facilitate a better caregiving outcome.

Quality of life domains important and relevant to family caregivers of advanced cancer patients in an Asian population: a qualitative study

2014 ◽  
Vol 24 (4) ◽  
pp. 817-828 ◽  
Author(s):  
Geok Ling Lee ◽  
Mandy Yen Ling Ow ◽  
Ramaswamy Akhileswaran ◽  
Grace Su Yin Pang ◽  
Gilbert Kam Tong Fan ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Qualitative Study ◽  
Cancer Patients ◽  
Family Caregivers ◽  
Advanced Cancer ◽  
Asian Population ◽  
Life Domains ◽  
Advanced Cancer Patients

Care without sufficient knowledge of people with home enteral tube feeding: a qualitative study

2021 ◽  
Vol 19 (10) ◽  
pp. 26-34
Author(s):  
Mehri Doosti-Irani ◽  
Farangis Heidari Goojani ◽  
Leila Rafiee Vardanjani ◽  
Kobra Noorian
Keyword(s):  
Qualitative Study ◽  
Family Caregivers ◽  
Health Professionals ◽  
Tube Feeding ◽  
Interview Data ◽  
Negative Consequences ◽  
Correct Position ◽  
Face To Face ◽  
Enteral Tube Feeding ◽  
The Family

Aim: This study aimed to explore family caregivers' experiences with tube feeding at home in Iran. Methods: This qualitative study was conducted with purposefully selected family caregivers who participated in an in-depth, semi-structured, face-to-face interview. Data analysis was performed through content analysis and rigor was investigated. Results: In total, 20 caregivers were interviewed. Two main categories were found in the interview data: ‘abandoned training’ and ‘lack of knowledge of nutrition’. Participants felt abandoned and unsupported by health professionals. Participants also reported feeling that health professionals passed the training responsibility to other health professionals who did not give training. This resulted in participants feeling obligated to learn from their peers. Participants lacked knowledge about nutrition, as well as how to prepare home-made formula for feeding, the correct position for feeding and feeding times. Conclusion: Despite having a heavy and vital responsibility, participants felt that they had not been adequately trained and thus faced making errors, resulting in negative consequences for the patient and the family. Therefore, appropriate plans must be made to promote preparation for home care.

Intervention is Urgently Needed to Address Poor Awareness of South Asian Family Caregivers for Dementia Care: A Qualitative Study

2021 ◽  
pp. 70-81
Author(s):  
Qazi Shafayetul Islam ◽  
Nasima Akter
Keyword(s):  
Qualitative Study ◽  
Family Caregivers ◽  
South Asian ◽  
Memory Loss ◽  
Dementia Care ◽  
Health Providers ◽  
Educational Training ◽  
Incurable Disease ◽  
Prevention And Treatment ◽  
The Face

Introduction: “The National Dementia Strategies” in Canada emphasizes improving the knowledge of formal and informal caregivers for better care for the person living with dementia. Aim: This study aimed at exploring awareness and the attitudes of South Asian Bangladeshi family caregivers towards dementia care. Methods: It was purposive sampling and a qualitative study. The study included 45 family caregivers (>55 years) for the face-to-face interviews in Toronto, Ontario. The study used semi-structured questions. The duration of the data collection was between February and March 2020. Results: The study included the three areas related to dementia, such as a) the awareness of dementia, b: awareness of prevention and treatment as well as the awareness of caregivers about what is needed for better dementia care, and c) attitudes of caregivers towards dementia care. Many caregivers described dementia as memory loss and forgetfulness. According to the caregivers, anxiety, depression, and aging were the risk factors of dementia. The caregivers commonly perceived dementia as an unpreventable and incurable disease. Moreover, many caregivers did not know about the appropriate health providers who diagnosed and treated dementia, and they were not aware of non-pharmacological care of dementia. The caregivers perceived dementia as a shameful disease. They would not go for diagnosis if they had risks for dementia and would hide their dementia after diagnosis. Many caregivers confessed that training was essential to improve knowledge about dementia, but they did not want to be a caregiver for the person living with dementia. Conclusion: The South Asian Bangladeshi family caregivers had not enough awareness about dementia, prevention, and treatment. Dementia was associated with shame, and they had less interest in dementia care. Urgent educational training is needed in their language to improve knowledge, reduce stigma, engage them in dementia care, and achieve the goals of the National Dementia Strategies.

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