scholarly journals An overview and evaluation of the oncology family caregiver project: improving quality of life and quality of care for oncology family caregivers

2012 ◽  
Vol 22 (7) ◽  
pp. 1645-1652 ◽  
Author(s):  
Betty Ferrell ◽  
Jo Hanson ◽  
Marcia Grant
Keyword(s):  
Quality Of Life ◽  
Quality Of Care ◽  
Family Caregivers ◽  
Family Caregiver

scholarly journals Understanding the Link between Family Caregiver Quality of Life and the Care Provided to Older People With Dementia

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 153-154
Author(s):  
Afeez Hazzan
Keyword(s):  
Quality Of Life ◽  
Quality Of Care ◽  
Older People ◽  
Family Caregivers ◽  
Family Caregiver ◽  
Well Being ◽  
The United States ◽  
People With Dementia ◽  
The Impact

Abstract Dementia is one of the most rapidly growing diseases in the United States. In 2018, the direct costs to American society of caring for older people with dementia was approximately $277 billion. Primary informal caregivers are mainly responsible for the care of older people with dementia including Alzheimer’s disease. Caregivers perform a myriad of duties ranging from shopping for their loved ones’ groceries, helping with medications, and managing finances. The caregiving role becomes more demanding as the disease progresses over time, and studies have shown that the quality-of-life (QoL) experienced by caregivers of older adults who have dementia is lower than the QoL of caregivers for older people who do not have dementia. To the best of our knowledge, there has been no research conducted to investigate whether lower caregiver QoL affects the level or quality of care that caregivers provide to persons with dementia. In the current study, we interviewed family caregivers living in Rochester, New York to inquire about their quality of life and the care provided to older people living with dementia. Further, caregivers completed the 36-item Short Form Health Survey (SF-36) as well as a draft questionnaire for measuring the quality of care provided to older people living with dementia. Both quantitative and qualitative findings from this study reveals important relationships between family caregiver QoL and the care provided, including the impact of social support and financial well-being. The study findings could have significant impact, particularly for the provision of much needed support for family caregivers.

scholarly journals Quality of Care Provided by Family Caregivers of Older People With Dementia: Measurement and Interpretations

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 152-152
Author(s):  
Afeez Hazzan
Keyword(s):  
Quality Of Care ◽  
Older People ◽  
Family Caregivers ◽  
Family Caregiver ◽  
Primary Reason ◽  
People With Dementia ◽  
High Level ◽  
The Impact ◽  
The Relationship

Abstract Family caregivers of older people living with dementia are relatives, friends, or neighbors who provide assistance related to this condition, but who are unpaid for the services they provide. Although caregiving could be personally rewarding, many caregivers report a high level of strain. Compared to caregivers of older adults who do not have dementia, family caregivers of older people living with dementia report lower quality-of-life (QoL). In a published systematic review examining the relationship between family caregiver QoL and the quality of care provided, only one study was found to be somewhat relevant. The study suggested that the primary reason for an absence of research into the link between family caregiver QoL and quality of care was the absence of a questionnaire for measuring quality of care in dementia. Therefore, any attempt to investigate the impact of caregiver QoL on the care provided to older people with dementia must first address the lack of an instrument to measure quality of care. To address this issue, we interviewed approximately 20 family caregivers in order to elicit feedback on measurements and interpretation of the quality of care provided by family caregivers of older people living with dementia. Content analysis of the interview transcripts revealed that the quality of relationships with family, caregiver availability to provide or supervise care, and availability of paid or volunteer help are important for the quality of care provided. These results have important implications, particularly for the development of an instrument to measure quality of care in dementia.

scholarly journals DO INTRA-PROXY GAPS EMERGE WHEN FAMILY CAREGIVERS ASSESS QOL FROM DIFFERENT PERSPECTIVES?

2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S979-S979
Author(s):  
Patricia Egan
Keyword(s):  
Quality Of Life ◽  
Family Caregivers ◽  
Family Caregiver ◽  
Care Recipient ◽  
Personal Factors ◽  
Care Recipients ◽  
The Family ◽  
Health Factors ◽  
Service Agencies

Abstract Dementia family caregivers are routinely enlisted as proxy assessors of care recipients’ quality of life (QOL). This study explored whether prompts to change perspective during QOL assessment could elicit an intra-proxy gap. The intra-proxy gap was hypothesized to be any difference between those assessments made from the caregiver’s own perspective and those made from the adopted perspective of the care recipient, as the care giver imagined it to be (Pickard and Knight, 2005). Thirty-six dementia family caregivers were recruited from senior service agencies. Subjects completed the Quality of Life-Alzheimer Disease (QOL-AD), Caregiver Version under two conditions: First, from an unprompted perspective and second, from the adopted perspective of the care recipient, as the family caregiver imagined it to be. T-testing indicated intra-proxy gaps emerged for eleven of the QOL-AD’s thirteen domains. For these domains, QOL scores were higher when assessed from the care recipient’s perspective, as the family caregiver imagined it to be. The sample was then repeatedly bisected using caregivers’ personal, relational, and health factors. T-testing indicated that family caregivers’ personal factors were associated with intra-proxy gaps across more QOL-AD domains than their relational or health factors were. Three personal factors, being of older age, having more empathetic concern, and having more empathetic distress, were associated with intra-proxy gaps more frequently than other personal factors were. Findings suggest that clinicians should be alert for perspective employed by proxy assessors and for the possibility of intra-proxy gaps. Recognition of these gaps could help improve interpretation of QOL scores.

scholarly journals THE EFFECTS OF THE NAMASTE CARE FAMILY PROGRAM ON QUALITY OF LIFE OF PEOPLE WITH ADVANCED DEMENTIA

2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S824-S824
Author(s):  
Jenny T van der Steen ◽  
Karlijn J Joling ◽  
Anneke L Francke ◽  
Wilco P Achterberg ◽  
Hanneke J A Smaling
Keyword(s):  
Quality Of Life ◽  
Nursing Homes ◽  
Family Caregivers ◽  
Family Caregiver ◽  
Intervention Group ◽  
Secondary Outcome ◽  
Advanced Dementia ◽  
Family Program ◽  
Care Family

Abstract People with advanced dementia often die in nursing homes. Family caregivers frequently feel that their loved one’s quality of life and dying is suboptimal. The daily Namaste Care Family program -derived from the US Namaste Care program- involves family caregivers and integrates personalized care with meaningful activities for people with advanced dementia. A cluster-randomized controlled trial (December 2016 - December 2018) examined effects of the Namaste Care Family program on resident and family caregiver outcomes. Ten Dutch nursing homes implemented Namaste Care Family for 117 residents, while nine nursing homes provided usual care for 114 residents in the study. Nursing staff assessed quality of life over the last week with the Quality of Life in Late-Stage Dementia (QUALID, the primary resident outcome measure). Research assistants observed discomfort during the sessions with the Discomfort Scale-Dementia of Alzheimer Type (DS-DAT). Assessments were at baseline and after 1, 3, 6, and 12 months. We found a significant difference in QUALID score at 12 months favoring quality of life in the intervention group. Further, the intervention group showed less signs of discomfort at 3, 6, and 12 months compared with the control group. The Namaste Care Family program can improve quality of life of people with advanced dementia in the long run. These study findings support sustained implementation of the daily program in nursing homes. Further analyses of effects on the other outcomes will include blinded DS-DAT assessments, more secondary outcome measures and family caregiver outcomes.

scholarly journals The effect of neuropalliative care on quality of life and satisfaction with quality of care in patients with progressive neurological disease and their family caregivers: an interventional control study

2020 ◽  
Vol 19 (1) ◽  
Author(s):  
Radka Bužgová ◽  
Radka Kozáková ◽  
Michal Bar
Keyword(s):  
Quality Of Life ◽  
Quality Of Care ◽  
Family Caregivers ◽  
Neurological Disease ◽  
Intervention Group ◽  
Control Group ◽  
Specialized Palliative Care ◽  
Advanced Stages ◽  
The Individual

Abstract Background It is recommended that patients with progressive neurological disease (PND) receive general and specialized palliative care. The purpose of this study was to determine the effect of neuropalliative care on quality of life (QoL) and satisfaction with provided care in both patients with PND in advanced stages of disease and their family caregivers. Methods The sample consisted of 151 patients with PND and 140 family caregivers. The PNDQoL questionnaire was used for data collection. Patients and family caregivers completed the questionnaires both before and 3 months after the intervention. Results Before intervention, there were no statistically significant differences in the individual domains of QoL in patients and family caregivers in either the intervention or the control group. After intervention, differences were identified in the sample of patients in the domains of symptoms burden (p < 0.001), emotional (p < 0 .001), social functioning (p = 0.046), spiritual area (nonreligious) (p = 0.050), and in QoL. In the sample of family caregivers, there were differences in the domains of symptoms burden (p < 0.001), emotional functioning (p = 0.016), spiritual area (nonreligious) (p = 0.042), and in the assessment of health (p = 0.002), and QoL (p = 0.002). Patients and family caregivers from the intervention group evaluated their satisfaction with the quality of care provided significantly more positively in all five analyzed domains. Conclusion The provision of neuropalliative care to patients with advanced stages of PND helped to maintain and slightly improve their QoL, and symptoms burden, and resulted in a more positive assessment of satisfaction with the quality of care provided.

scholarly journals Between freedom and reclusion: social support as a quality-of-life component in the family caregiver-dependent person binomial

2008 ◽  
Vol 16 (1) ◽  
pp. 15-23 ◽  
Author(s):  
Silvia Cristina Mangini Bocchi ◽  
Margareth Angelo
Keyword(s):  
Quality Of Life ◽  
Social Support ◽  
Family Caregivers ◽  
Family Caregiver ◽  
Cerebrovascular Accident ◽  
Methodological Framework ◽  
Rehabilitation Process ◽  
Patient’S Autonomy ◽  
The Family

This is a qualitative study which uses Grounded Theory as its methodological framework and Symbolic Interactionism as a theoretical base to understand the experience of family caregivers for Cerebrovascular Accident (CVA) patients with regard to social support during their rehabilitation process at home. The components (themes and categories) of the phenomenon assuming home care and specifically the themes assuming care with support and assuming care without support were inter-related for the purpose of comparison and analysis, in order to apprehend how the interaction between them occurred. It was observed that, in addition to the recovery of the patient's autonomy, social support is one of the intervenient components in the quality of life for the family caregiver-disabled person binomial, particularly with respect to the caregiver's freedom to resume his/her life plan.

Family caregivers’ perceived communication self-efficacy with physicians

2020 ◽  
pp. 1-7
Author(s):  
Elaine Wittenberg ◽  
Anna M. Kerr ◽  
Joy V. Goldsmith
Keyword(s):  
Quality Of Life ◽  
Family Caregivers ◽  
Family Caregiver ◽  
Self Efficacy ◽  
Online Survey ◽  
Skill Training ◽  
Communication Skill Training ◽  
Cross Sectional ◽  
The Family

Abstract Objective Family-centered health care requires successful communication between patient, family caregivers, and healthcare providers. Among all providers, physicians are most likely to interact with caregivers. Using the Family Caregiver Communication Typology, this study examined perceived communication self-efficacy with physicians among four types of caregivers: Manager, Partner, Carrier, and Lone. Method A cross-sectional online survey included the Family Communication Typology Tool, Communication Perceived Self-Efficacy Scale, the Caregiver Quality of Life-Revised Index, and the Generalized Anxiety Disorder (GAD-2) questionnaire. Results An online survey of 220 family caregivers currently caring for an adult family member revealed significant differences in communication self-efficacy among family caregiver communication types, revealing that Partner caregivers have the highest perceived communication self-efficacy, and that for some caregiver types, higher perceived communication self-efficacy is associated with certain quality of life dimensions. Significance of results Differences in communication self-efficacy with physicians among the four caregiver communication types (Manager, Partner, Carrier, and Lone) provide further evidence that the typology represents variance in caregiver communication abilities. Development of future medical curricula targeting communication skill training should include an overview of the typology and communication strategies as these may increase effective communication between physicians and caregivers.

scholarly journals Burden, Quality of Life, and Palliative Care for Family Caregivers of Individuals with Advanced Liver Disease: a Systematic Literature Review

2021 ◽  
Author(s):  
Christopher D. Woodrell ◽  
Arnab Mitra ◽  
Andrew Hamilton ◽  
Lissi Hansen
Keyword(s):  
Quality Of Life ◽  
Palliative Care ◽  
Liver Disease ◽  
Family Caregivers ◽  
Prospective Studies ◽  
Family Caregiver ◽  
Advanced Liver Disease ◽  
Cross Sectional

Abstract Purpose of Review Identify and describe prior studies of family caregiver quality of life, health, and burden experienced while caring for patients with advanced liver disease and the possible role of palliative care. Recent Findings Thirty-six articles were identified that met inclusion criteria. Studies identified included cross-sectional, longitudinal, and prospective intervention studies, with a high proportion of qualitative and descriptive research. Resulting studies addressed type of family caregiver burden, including physical, psychological, and financial causes of burden, including HE, lack of information and communication, and unpredictability of the disease course. Few prospective studies were identified. The interventions described included nurse-led palliative care, mindfulness-based stress reduction, and coping interventions. Summary Little has been published on the nature of family caregiving, burden, quality of life, or the role of palliative care for family caregivers of people with advanced liver disease. Prospective studies that address unmet family caregiver needs, including palliative care interventions, are lacking.

Neuroticism, problem-solving abilities, and family caregiver quality of life

2010 ◽  
Author(s):  
Neeta A. Ramkumar ◽  
Timothy R. Elliott ◽  
Carly E. McLaughlin ◽  
Dennis Zgaljardic ◽  
Norma Erosa
Keyword(s):  
Quality Of Life ◽  
Problem Solving ◽  
Family Caregiver ◽  
Caregiver Quality

HUBUNGAN PERAN FAMILY CAREGIVER TERHADAP QUALITAS HIDUP LANSIA

2019 ◽  
Vol 11 (1) ◽  
pp. 51-56
Author(s):  
RIANI PRADARA JATI ◽  
Sekar Farah Nabila
Keyword(s):  
Quality Of Life ◽  
Family Caregiver ◽  
Random Sampling ◽  
Simple Random Sampling ◽  
The Elderly ◽  
Chi Square ◽  
The Poor ◽  
The Family

  Penempatan peran yang baik bagi Family Caregiver sangatlah membantu lansia dalam meningkatkah qualitas hidupnya, meningkatkan motivasi dalam menjalankan hidup Penelitian ini bertujuan Mengetahui hubungan peran Family Caregiver dalam pemenuhan qualitas hidup bagi lansia di Kelurahan Langenharjo Kabupaten Kendal. DesainPenelitianDeskriptifKorelasional menggunakan pendekatan Krosectional,tehnikSamplingStratified Simple Random Sampling dengan karakteristik heterogen, dari populasi mempunyai hak yang sama untuk diseleksi sebagai sampel teknik undianPengambilan data dengan menggunakan kuesioner yang telah diuji validitas dan reliabilitasnya. Uji statistik Chi-square, dengan taraf signifikasi 5%jumlah sampel pada penelitian ini 70 sampel pada Family Caregiver dari 213 populasi yang ada. Hasil penelitian dari 70 responden didapatkan Peran Family Caregiver tidak baik dengan qualitas hidup tidak baik 33 (47,1%), sedangkan Peran Family Caregiver kurang baik dengan qualitas hidup lansia baik 3 (4,3%). Untuk distribusi Peran Family Caregiver kurang baik dengan qualitas hidup lansia tidak baik sebanyak 6 responden (8,6%) sedangkan untuk distribusi Peran Family Caregiver kurang baik dengan qualitas hidup lansia baik sebanyak 23 responden (32,9%). Terakhir, untuk distribusi Peran Family Caregiver baik dengan qualitas hidup lansia tidak baik didapatkan hasil 2 responden (2, 9%) sedangkan untuk distribusi Peran Family Caregiver baik dengan qualitas hidup lansia baik didapatkan hasil 3 responden (4,3%)Menunjukkan nilai ρ value 0,001 (ρ < 0,05) berarti ada hubungan antara dukungan keluarga dengan kepatuhan lansia dalam keikutsertaan posyandu lansia. Disarankan kepada semua Family Cregiver lansia untuk mampu memahami pentingnya perhatian, dukungan bagi lansia dalammeningkatkan qualitas hidup yang lebih baik bagi lansia.   Kata kunci : Peran family caregiver, qualitas hidup, lansia.   ABSTRACT Placement of a good role for Family Caregiver is very helpful for the elderly to improve their quality of life, increase motivation in living life Research Objective: To know the relationship between the role of Family Caregiver in fulfilling quality of life for the elderly in Langenharjo Village, Kendal Regency. Descriptive Correlational Research Design uses a cross sectional approach, Sampling Stratified Simple Random Sampling technique with heterogeneous characteristics, from the population has the same right to be selected as a sample lottery technique Retrieving data using a questionnaire that has been tested for validity and reliability. Test Chi-square statistics, with a significance level of 5% the number of samples in this study 70 samples on the Family Caregiver from 213 populations. Results of the Study Of 70 respondents found the role of Family Caregiver was not good with poor quality of life 33 (47.1%) , while the role of the Family Caregiver is not good with the quality of life of a good elderly 3 (4.3%). For the distribution of the role of Family Caregiver is not good with the quality of life of the poor family as many as 6 respondents (8.6%) while for the distribution of the Role of Family Caregiver is not good with the quality of life of good elderly as many as 23 respondents (32.9%). Finally, the distribution of the Role of Family Caregiver with good quality of life for the poor is obtained by 2 respondents (2, 9%), while the distribution of the Role of Family Caregiver with good quality of life for the elderly is obtained by 3 respondents (4.3%). 0.001 (ρ <0.05) means that there is a relationship between family support and the compliance of the elderly in the participation of the elderly posyandu. It is recommended to all elderly Cregiver families to be able to understand the importance of attention, support for the elderly in improving the quality of life better for the elderly   Keywords: Role of Family Caregiver, Quality of Life, Elderly

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