Tensions in support for family caregivers of people with dementia in Singapore: A qualitative study

Dementia ◽  
2021 ◽  
pp. 147130122199056
Author(s):  
Iccha Basnyat ◽  
Leanne Chang
Keyword(s):  
Family Support ◽  
Family Caregivers ◽  
Emotional Support ◽  
Family Members ◽  
Primary Caregivers ◽  
Support Needs ◽  
Physical Support ◽  
Cultural Expectations ◽  
People With Dementia ◽  
The Family

Background Family members as informal caregivers are considered the first line of support for people with dementia across the world. In Singapore, caregiving expectations revolve around the cultural expectations of providing care in the home environment. However, studies in Singapore have identified a lack of family support for primary caregivers. Family support has been discussed in the literature as the provision of care for people with dementia, and rarely as a resource for family caregivers. Method To understand family support among primary caregivers in Singapore, 24 semi-structured interviews were conducted. Thematic analysis found four themes: excuses for lack of physical support for the caregiver, tensions between cultural expectations of caregiving and the provision of support, unmet emotional support, and lack of awareness of dementia and caregiving needs. Findings Caregivers rationalized and forgave the absence of physical support but were frustrated when the lack of support impacted people with dementia. This was seen as a lack of fulfilling cultural obligations of caring for elderly parents. The caregivers also felt frustrated with the lack of emotional support provided to them, but these were unspoken between the caregiver and the family members. Insufficient and unhelpful support giving was exacerbated with the perception of family members’ limited understanding of the demands of caregiving. Conclusion The findings offer four practical suggestions to address unmet support needs. First, public education is needed to enhance general knowledge about the symptoms and progression of dementia. Second, help is needed to address miscommunication about support within the family. Third, the development of guidebooks is needed to help family caregivers communicate with family members about their various support needs. Fourth, the relationship between cultural expectation and caregiving must be understood within the context of modernity and urbanism.

scholarly journals A qualitative study of family caregivers’ coping strategies of looking after people with dementia in China

2020 ◽  
Vol 25 (8) ◽  
pp. 636-649
Author(s):  
Zhang Xiuxiang ◽  
Xiubin Zhang ◽  
Jo Hockley
Keyword(s):  
Coping Strategies ◽  
Family Caregivers ◽  
Interpretative Phenomenological Analysis ◽  
Filial Piety ◽  
Family Members ◽  
Sociocultural Context ◽  
People With Dementia ◽  
The Family ◽  
Seeking Help ◽  
Support Family

Background and aims Globally, two thirds of people with dementia are cared for by their families or friends. Family caregivers’ coping strategies of managing the caregiving burden of dementia have been studied widely in western literature. However, few attempts have been made to explore the experience of family caregivers’ coping strategies in China. The aim of this study was to explore the family caregivers’ coping strategies when caring for people with dementia in one city in the province of Shandong, China. Methods Fourteen family caregivers were individually interviewed, and interpretative phenomenological analysis was used to identify themes within different family members. Results Four key themes were found: (a) being filial; (b) changing self and self-care; (c) seeking help; and (d) having hope and continuing life. Conclusion The study illustrates the different strategies developed by family members in order to cope with their new roles when caring for a relative who has dementia. It shows that cultural belief of filial piety plays a large role across these various coping strategies. It highlights how responsibility has been maintained and influenced by the specific sociocultural context. The results provide a useful foundation for developing interventions that support family caregivers cope with the burden of caring in this population.

Family Support Needs Following Acquired Brain Injury Across Metropolitan and Regional/Remote South Australia

2015 ◽  
Vol 16 (2) ◽  
pp. 131-144 ◽  
Author(s):  
Michelle Bellon ◽  
Ruth Crocker ◽  
Jennifer Farnden ◽  
Jaime Gardner ◽  
Sandi Sando ◽  
...  
Keyword(s):  
Brain Injury ◽  
Focus Groups ◽  
Family Support ◽  
Peer Support ◽  
Support Groups ◽  
Emotional Support ◽  
Family Members ◽  
South Australia ◽  
Acquired Brain Injury ◽  
Support Needs

Aims:To identify and compare, family support needs following an acquired brain injury (ABI) in metropolitan and regional/remote areas in order to inform the development of a state-wide family peer support network.Design:Mixed methods design including postal survey and focus groups.Results:The survey was completed by 194 family members who provide support to an adult with ABI. Focus groups included 43 participants (29 family members, 14 people with ABI). Thematic analysis of open-ended survey responses and focus group transcripts revealed 15 areas of needed support. Although all themes were identified by both geographic groups, regional/remote participants commented more frequently on the need for coordinated, accessible and tailored services. A strong focus was placed on the need for counselling and emotional support, as well as family support groups from both major city and regional/remote participants. Each support was reviewed to identify those which could be augmented through peer-supports, including: emotional support; family support groups; ABI information; family social activities; help to navigate the system; early supports (within the first year of ABI); and self-advocacy training.Conclusions:Results highlight a need for ongoing supports for the entire family following ABI in both metropolitan and regional/remote regions of SA (South Australia). Support themes can inform the development of family-centred services, including the role of peer-support networks.

Effectiveness of a Primary Care Program to Increase Physical Activity in People With Dementia and Their Family Caregivers (AFISDEMYF Study).

2021 ◽  
Author(s):  
Elena DE DIOS-RODRIGUEZ ◽  
María C PATINO-ALONSO ◽  
Susana GONZÁLEZ-SÁNCHEZ ◽  
Joana RIPOLL ◽  
Olaya TAMAYO-MORALES ◽  
...  
Keyword(s):  
Physical Activity ◽  
Blood Pressure ◽  
Primary Care ◽  
Systolic Blood Pressure ◽  
Family Caregivers ◽  
Intervention Group ◽  
Care Program ◽  
Control Group ◽  
People With Dementia ◽  
The Family

Abstract Aim: To evaluate the effectiveness of an intervention in primary health care designed to increase physical activity in people with dementia and their family caregivers.Methods: A cluster-randomized multicentre clinical trial was carried out.Participants: 140 people with dementia (median age 82 years;63.6% women) and 176 caregivers (median age 62 years ;72.7% women). Seventy patients and 80 caregivers were assigned to the Control Group (CG) and 70 patients and 96 caregivers to the Intervention Group (IG). The physical activity was measured with the pedometer and with the IPAQ-SF questionnaire. The intervention consisted of applying in primary care the program promoting physical activity (PEPAF) for 3 months. The changes observed at 6 months were analyzed. Results:In people with dementia, in the pedometer assessment a decrease was observed in both groups, but it was larger in the CG both in the total number step/day lower in the IG than in the CG and in the aerobic steps / day (52.89 vs -615.93). The activity reported with the IPAQ-SF decreased more in IG, both in the MET/min/week (-258.470 vs -148.23) and in the MVPA min/week. In caregivers the pedometer assessment showed that total steps/day increased more in the IG, as did aerobic steps/day (356.91 vs -12.95). The IPAQ-SF a smaller increase in global activity was declared in the IG than in the CG (545.25 MET/min/week vs 609.55), but the increase in vigorous activity was greater. No differences were found in changes in the functional status and the cognitive performances of people with dementia nor in the mental health in the caregivers, but systolic blood pressure, the Family APGAR and overload in the IG did improve.Conclusions: The results suggest that the intervention carried out may be effective on physical activity in both patients and caregivers. It can also improve systolic blood pressure, the Family APGAR and overload in caregivers. This is the first study to implement a primary care intervention aimed at simultaneously increasing physical activity in people with dementia and their relatives. These results reinforce the importance of using objective measures in clinical trials in people with dementia.Trial registration number: NCT 02044887.

Families Living with Mental Illness

2016 ◽  
Vol 4 (1) ◽  
Author(s):  
Aditi Rana
Keyword(s):  
Mental Illness ◽  
Mental Health Professionals ◽  
Mentally Ill ◽  
Family Members ◽  
Primary Caregivers ◽  
Well Being ◽  
Structured Interviews ◽  
Indian Context ◽  
The Family ◽  
Partner Research

Mental illness is a growing reality of our times. Usually in a typical Indian family, the parents act as the primary caregivers for the child suffering from mental disorder. For adult sufferers, it can also be siblings or offspring, and  at times even spouse or partner. Research on the experiences of families of mentally ill people has been minimal in the Indian context. This study aims to shift the focus from the mentally ill patients to the suffering of the caregivers and families of the patient keeping in mind the interconnected well being of the family in a collectivist culture. Following a qualitative approach, narratives have been taken from the family members of mentally ill (narratives of 8 families with mentally ill person) and also the mental health professionals (two) through semi structured interviews. The findings suggest that the family members suffer from a significant amount of stress accompanied by burden. Also, they feel secluded from the society and experience a lack of assistance to deal with the mentally ill member of the family.

scholarly journals Meanings of Family Support in the Treatment of Drug Dependence

2018 ◽  
Vol 28 (0) ◽  
Author(s):  
Laís Ramos Sanches ◽  
Tassiana Gonçalves Constantino dos Santos ◽  
Thaísa Borges Gomes ◽  
Marcelo Dalla Vecchia
Keyword(s):  
Social Support ◽  
Family Support ◽  
Family Involvement ◽  
Drug Dependence ◽  
Support Needs ◽  
Family Participation ◽  
Structured Interviews ◽  
Problematic Use ◽  
The Family ◽  
Alcohol And Other Drugs

Abstract The family is a key element of social support in the treatment of people who experience problems resulting from the use of alcohol and other drugs. This article aimed to understand the meanings of individuals under treatment due to the problematic use of alcohol and other drugs in relation to family participation. Six semi-structured interviews were carried out with people who adhered or not to the treatment proposed by an institution similar to a therapeutic community, analyzed later by analysis of thematic content. It was possible to observe (a) the low family involvement during the treatment, (b) the stigmatization and the individualization of the problematic use of alcohol and other drugs, and (c) the care focused on the figure of women. Guidance, listening and support needs for family members need to be properly examined during treatment to promote adherence.

scholarly journals Father-child discourse in Family Guy: a corpus-based analysis

2020 ◽  
Vol 26 (2) ◽  
pp. 61-65
Author(s):  
Anhelina Sliepushova
Keyword(s):  
Family Communication ◽  
Gender Stereotypes ◽  
Emotional Support ◽  
Family Members ◽  
Family Roles ◽  
American Family ◽  
The Family ◽  
Word Lists ◽  
The Future ◽  
Family Guy

The article aims at analysis of gender and family stereotypes in father-child communication in an animated series Family Guy, featuring a typical American family. The study focuses on Peter Griffin's discourse, the father of the family, containing his communication with two of his teenage children, a son and a daughter, unveiling gender peculiarities in father-son and father-daughter discourses. The attempt is made to disclose how gender and family roles are verbalized in communication between family members. The conversation, discourse and corpus-based analyses have been used to analyze the main character's discourse in order to single out the father's specific vocabulary — through word lists, keyword lists, clusters and collocations — he uses while communicating with his son and daughter. The findings show that Peter Griffin chooses different language means while talking to his son and daughter. Thus, his discourse addressing his adolescent son Chris is rich in direct addresses, mainly commands when the father tries to discipline his son. Offering his son emotional support or encouragement the father stays forthright with him creating an image of “real men” stereotypical conversations. On the contrary, while communicating with his daughter Peter modifies her name Meg addressing her as honey, sweetheart, one-of-a-kind in father-daughter discourse. However, using diminutives he humiliates his daughter and makes her feel an abandoned child. In this way, he makes her feel special but in a negative way. Family communication created in the animated series reflects gender stereotypes in father's attitude to his children belonging to two different sexes. Nevertheless, this verbal tendency does not affect relationships within the family. For the future, it is worthwhile to compile a larger corpus including mother-child, child-father, and child-mother discourses to get more representative results

scholarly journals Dukungan Keluarga terhadap Penderita Demensia di Bandung

2020 ◽  
Vol 10 (2) ◽  
pp. 60-65
Author(s):  
Upik Rahmi ◽  
Yoanita Suryani
Keyword(s):  
Family Support ◽  
Family Members ◽  
Economic Factors ◽  
Cross Sectional ◽  
Family Responsibilities ◽  
Dementia Patients ◽  
People With Dementia ◽  
Cross Sectional Design ◽  
Quantitative Descriptive ◽  
Education Psychology

Abstract Family members are primarily responsible for the care of loved ones with dementia. Family support and living with people with dementia are cultural norms that are expected in Indonesia, where family members with dementia are considered family responsibilities that must be fulfilled. The purpose of this study: to find out Family Support for Dementia sufferers. Quantitative descriptive with cross sectional design. The study was conducted in the city of Bandung with a population of 41 respondents and a sample of (n = 41) primary caregivers / families who care for dementia patients, sampling with total sampling. Family support based on education in the good category (68.3%) and not good 13 respondents (31.7%), emotional factors in the good category 26 respondents (63.4%) and not good 15 respondents (36, 6%), based on spiritual in the good category of 24 respondents (58.5%) and not good 17 respondents (43.9%), social and psychological factors are in the good category 26 respondents (63.4%) and not good 15 respondents (36.6%), and the last indicator of economic factors was in the good category of 25 respondents (61.0%) and not good 16 respondents (39.0%). Family support is very important to improve the quality of life of people with dementia, namely support based on educational, psychological / emotional, spiritual, social and environmental and economic factors. Some have provided good support, but there is still support that is not good Keywords: Dementia, Family Support, Education, Psychology

Ethical aspects of researching subjective experiences in early-stage dementia

2011 ◽  
Vol 18 (5) ◽  
pp. 651-661 ◽  
Author(s):  
Hanna-Mari Pesonen ◽  
Anne M Remes ◽  
Arja Isola
Keyword(s):  
Early Stage ◽  
Family Members ◽  
Subjective Experiences ◽  
Ethical Aspects ◽  
People With Dementia ◽  
The Family ◽  
Research Interviews ◽  
Conducting Research ◽  
Person With Dementia

This article is based on a qualitative longitudinal study that followed the subjective experiences of both people living with dementia and their family members during the early stages of the illness. The purpose of this article is to describe and reflect on the ethical and methodological issues that occurred during data collection. The article focuses on the situation of the person with dementia and the family member and the role of the researcher when conducting the research interviews. Based on the results of this study, conducting research interviews with people with dementia and their family members poses several ethical and methodological challenges that must be addressed. In doing so, ethically sound dementia-specific research methods will be actively developed enhancing our understanding of living with dementia and providing new insights into the care of people with dementia and their family members.

scholarly journals HUBUNGAN DUKUNGAN KELUARGA DENGAN KONSEP DIRI PASIEN STROKE DI RUMAH SAKIT SANTA ELISABETH MEDAN

2017 ◽  
Vol 4 (2) ◽  
pp. 167-178
Author(s):  
Pomarida Simbolon Simbolon
Keyword(s):  
Family Support ◽  
Survey Design ◽  
Family Members ◽  
Sampling Technique ◽  
Self Concept ◽  
Stroke Patients ◽  
Cross Sectional ◽  
Significance Level ◽  
Good Family ◽  
The Family

Stroke is a symptom that occurs due to impaired blood circulation in the brain. Stroke diseases has the third death sequence in the world after heart disease and cancer. Good family support is needed in improving self-concept for stroke patients. This research which aims to determine the relationship of family support with self-concept in patients with stroke in Santa Elisabeth Hospital Medan. The design used in research was analytic survey design using the “cross-sectional” with a sample of 34 respondents and the sampling technique is purposive sampling. The data were collected by questionnaires and held in April 2016. Data analysis using chi-square test with significance level of 5%. Results of the study revealed that good family support (55,9%) and negative self-concept (65,6%). The result of statistical test family support with self-concept value p=0,004 (p<0,05) It means there was significant relationship the family support with self-concept in stroke patients in Santa Elisabeth Hospital Medan. It was expected to nurses improve service to patients, motivate and assistsick family members and nurses work with the famiies in maintaining self concept patients. As for the family was expected to pay attention to patients health condition, motivate sick family members by giving motivation to recover, and assisting the patient in the process of healing.

A QUALITATIVE INVESTIGATION OF THE IMPACT OF HOME-BASED PRIMARY CARE ON FAMILY CAREGIVERS

2019 ◽  
pp. 1-4
Author(s):  
E. Wool ◽  
J.L. Shotwell ◽  
J. Slaboda ◽  
A. Kozikowski ◽  
K.L. Smith ◽  
...  
Keyword(s):  
Primary Care ◽  
New York ◽  
Family Caregivers ◽  
Emotional Support ◽  
Positive Impact ◽  
Clinical Care ◽  
Family Members ◽  
Home Based Primary Care ◽  
Home Based ◽  
The Impact

Background: Home-based primary care (HBPC) provides team-based clinical care for homebound patients who have difficulty accessing typical outpatient care. Interdisciplinary team members also provide social and emotional support and serve as a resource for family caregivers, who often experience significant emotional stress. Objectives: This qualitative study explores the impact of HBPC on family caregivers to identify aspects of the program that caregivers find most helpful and meaningful as well as areas for improvement. Design: Semi structured recorded interviews were conducted with family caregivers of frail, elderly homebound patients. Interviews included the following topics: overall program satisfaction and suggestions for improvement. Setting: A HBPC program serving patients in Queens, Nassau and Suffolk counties in New York. Participants: Nineteen family caregivers: 13 women, 6 men; 10 were adult children; 6 were spouses, and 3 were other family members of patients in a HBPC program. Measurements: Thematic coding of all recorded transcribed interviews was prepared by 3 qualitative coders. Interrater reliability was conducted to ensure reliability across coders before themes were disseminated and discussed until consensus was achieved with the larger group of investigators. Results: Three main themes were identified: the importance of staff emotional support; the burden of caring for homebound patients; and the need for a broader range of home-based services. Multiple family members noted that the program not only had saved their loved one’s life, but had also metaphorically saved their own. Conclusions: Family caregivers value the communication and accessibility of HBPC and report that the program has a positive impact on their stress and mental health. Results can inform key aspects that need to be retained or enhanced with the expansion in HBPC programs.

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