scholarly journals WHAT FAMILY CAREGIVERS THINK AND FEEL WHEN PROXY ASSESSING FROM DIFFERENT PERSPECTIVES

2019 ◽  
Vol 3 (Supplement_1) ◽  
pp. S977-S977 ◽  
Author(s):  
Patricia Egan
Keyword(s):  
Quality Of Life ◽  
Family Caregivers ◽  
Emotional Experience ◽  
Assessment Process ◽  
Care Recipient ◽  
Care Recipients ◽  
Self Assessments ◽  
Affective Experiences ◽  
Service Agencies

Abstract Dementia family caregivers are routinely enlisted as proxy assessors of care recipient quality of life (QOL). Proxy assessment is not ideal because proxy assessments differ systematically from self-assessments and the assessment process can elicit negative affect from family caregivers. Prompting adoption of the care recipient’s perspective can enhance assessment congruence and may improve the emotional experience for assessors. This study explored family caregivers’ cognitive and affective experiences during QOL proxy assessments made from both their own and care recipients’ perspectives. Thirty-six dementia family caregivers were recruited from senior service agencies. Subjects completed the Quality of Life-Alzheimer Disease (QOL-AD), Caregiver Version using standard instructions to assess QOL across thirteen domains of their care recipient’s life without specifying the perspective to be used. Subjects were next asked to repeat the QOL-AD with instructions to adopt the perspective of their care recipient, as they imagined it to be. Subjects were then interviewed about what they thought and felt during each proxy assessment experience. Content analysis indicated that spontaneous perspective shifts and response shifts frequently occurred. Most subjects (91.7%) reported changed thinking for one or more QOL-AD domains when they were prompted to switch perspectives. Over half (61.12%) reported changed affect when switching perspectives and 90.9% of those experiencing changed affect reported affective improvement. Little or no affective change was reported by 38.89%. Findings suggest awareness of perspective can enhance clinical interpretation of proxy assessed QOL and can inform clinical response to dementia family caregivers who experience negative emotions while proxy reporting QOL.

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.

How Do Military Family Caregivers Who Completed a Supportive Intervention Differ From Those Who Dropped Out?

2020 ◽  
pp. 152483992090275
Author(s):  
Sherrie Wilcox ◽  
Deborah Girasek
Keyword(s):  
Quality Of Life ◽  
Family Caregivers ◽  
Feasibility Study ◽  
Somatic Symptoms ◽  
Military Family ◽  
Care Recipient ◽  
Patient Health Questionnaire ◽  
Health Questionnaire ◽  
Patient Health

Background. To create efficacious interventions for military family caregivers (MFCs), it is important to understand the characteristics and predictors of completers and dropouts of newly developed supportive interventions. Aim. The purpose of this study was to examine completion patterns in MFCs enrolled in an educational intervention feasibility study. Method. Baseline data are presented from MFC completers ( n = 64) and dropouts ( n = 60) of a national feasibility study for an innovative intervention. Measures include depression (Patient Health Questionnaire–2), anxiety (Generalized Anxiety Disorder–7), somatic symptoms (Patient Health Questionnaire–15), quality of life (World Health Organization Quality of Life–Brief), relationship satisfaction (Relationship Assessment Scale), and military care recipient number of injuries. Analysis of variance was used to evaluate differences between completers and dropouts and logistic regression was used to identify predictors of intervention completion. Results. Results indicated that MFCs with greater anxiety, χ2(3) = 10.33, p = .02; depression, χ2(1) = 8.18, p = .004; somatic symptoms, F(1, 106) = 6.26, p = .01; care recipient number of injuries, F(1, 118) = 16.31, p < .001; lower general satisfaction with treatment, F(1, 96) = 4.34, p = .04; and lower satisfaction with accessibility and convenience with treatment, F(1, 89) = 4.18, p = .04, were significantly more likely to complete the intervention. After multivariate analysis, the sole predictor of intervention completion was the number of care recipients’ injuries, χ2(6) = 14.89, N = 77, p < .05. Conclusions. Overall, findings indicate that MFCs who were more “at risk” were more likely to complete the intervention. Findings present patterns of intervention completion and provide insight on areas in need of further investigation on intervention development supporting the needs of MFCs.

Contributors to Poststroke Dysphagia-Related Caregiver Burden

2021 ◽  
pp. 1-13
Author(s):  
Cameron Davis ◽  
Ashwini M. Namasivayam-MacDonald ◽  
Samantha E. Shune
Keyword(s):  
Quality Of Life ◽  
Caregiver Burden ◽  
Care Recipient ◽  
Care Recipients ◽  
Area Of Interest ◽  
Quality Of Life Scale ◽  
Life Scale ◽  
Related Quality ◽  
Perceived Impact

Purpose Caregiver burden negatively impacts both stroke survivor and caregiver well-being. Thus, it is important to better understand the individual- and dyadic-level variables that may contribute to dysphagia-related caregiver burden. The aim of this preliminary study was to identify survivor-, caregiver-, and dyadic-specific factors associated with burden in couples experiencing poststroke dysphagia. Method Twenty-eight stroke survivors (“care recipients”) with dysphagia and their spouses (“caregivers”) participated. Care recipients and caregivers completed a survey from which scores for the following variables were derived: dysphagia-related caregiver burden, survivor- and spouse-perceived impact of dysphagia on mealtimes (social, mealtime logistics), dyadic congruence on perceived impact, International Dysphagia Diet Standardisation Initiative Functional Diet Scale, Swallowing-Related Quality of Life Scale, and Stroke Impact Scale (cognitive, emotional, physical, and social domains). Spearman's rho and point biserial correlation coefficients were calculated to determine the factors related to caregiver burden. Results Increased burden was significantly associated with greater care recipient– and spouse-perceived impact of dysphagia on mealtime logistics; however, burden was not associated with measures of dyadic congruence of perceived impact. Notably, increased burden was also associated with increased diet restrictiveness and decreased swallow-specific quality of life. Dysphagia-related caregiver burden was not associated with measures of stroke impact/severity across any domain. Conclusions Factors related to dysphagia-related caregiver burden are multifactorial and include both care recipient (e.g., International Dysphagia Diet Standardisation Initiative Functional Diet Scale, Swallowing-Related Quality of Life Scale, perceived impact of dysphagia on mealtime logistics) and caregiver (e.g., perceived impact of dysphagia on mealtime logistics) variables. The results of this preliminary investigation support the need to incorporate aspects of counseling and family-centered care into our management practices, a growing area of interest for speech-language pathologists.

scholarly journals Associates of Perceived Quality of Life in Chinese Older Adults Living With Cognitive Impairment

2021 ◽  
Vol 5 (Supplement_1) ◽  
pp. 245-245
Author(s):  
Xiang Gao
Keyword(s):  
Quality Of Life ◽  
Older Adults ◽  
Cognitive Impairment ◽  
Depressive Symptoms ◽  
Perceived Quality ◽  
Care Recipient ◽  
Chinese Older Adults ◽  
Care Recipients ◽  
Perceived Quality Of Life

Abstract This study examined perceived quality of life in Chinese older adults living with cognitive impairment in a group of urban Chinese older adults and explore its associations with caregivers’ characteristics. Questionnaires were administered in person to 300 caregiver-care recipient dyads from three urban communities in mainland China in 2019. The 40-item Alzheimer’s Disease-related Quality of Life tool asked caregiver respondents to indicate care recipients’ life conditions. Higher levels of caregiving burden (β = -0.19, p &lt; 0.01) and more depressive symptoms (β = -0.19, p &lt; 0.01) amongst caregivers were significantly associated with lower quality of life of care recipients. The results suggested that reducing caregivers’ burden and depressive symptoms are essential to promote quality of life of care recipients. Formal support from health professionals, service organizations, and communities are urgently called for to promote the wellbeing of Chinese families affected by cognitive impairment.

scholarly journals Optimizing nutrition and oral health for caregivers—intervention protocol

Trials ◽  
2021 ◽  
Vol 22 (1) ◽  
Author(s):  
Irma Nykänen ◽  
Tarja Välimäki ◽  
Liisa Suominen ◽  
Ursula Schwab
Keyword(s):  
Quality Of Life ◽  
Health Status ◽  
Oral Health ◽  
Nutritional Status ◽  
Home Care ◽  
Family Caregivers ◽  
Institutional Care ◽  
Oral Health Status ◽  
Care Recipients

Abstract Background The focus of care has shifted from institutional care to home care. Family caregivers provide the majority of home care that allows an opportunity for their care recipients to live at home and avoid costly institutional care. The aim of this study is to describe the nutritional status, oral health, and quality of life of family caregivers over the age of 65 and their care recipients, and to evaluate the impact of individually tailored diet and oral health advice to their nutritional status and oral health. Methods/design Altogether, 250 family caregivers aged 65 or over, and their care recipients are studied in this prospective randomized population-based multidisciplinary 6-month intervention study. Participants are randomly allocated to the intervention groups or the control group. Data collection is performed at three time-points: at baseline and 6 months and after a 6-month follow-up at 12 months. Caregivers’ and their care recipients’ nutritional and oral health status as a primary outcome, and functional ability, cognitive status, quality of life, depression symptoms, sense of coherence, morbidity, and medication of family caregivers as secondary outcomes will be measured using validated self-administered questionnaires and clinical examinations. Discussion To our knowledge, this is the first experiment to determine whether caregivers and their care recipients benefit from individual nutritional intervention and oral health intervention in terms of nutrition status, oral health status, and quality of life. Trial registration ClinicalTrials.gov NCT04003493. Registered on June 28, 2019

scholarly journals The 2020 Portrait of American Caregivers

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 681-681
Author(s):  
Regina Shih
Keyword(s):  
Family Member ◽  
Family Caregivers ◽  
Care Recipient ◽  
Health Conditions ◽  
Complex Care ◽  
The Past ◽  
Care Recipients ◽  
The Us ◽  
National Alliance

Abstract The prevalence of caregiving for an adult or child with special needs has increased significantly in the past five years (from 18.2% to over 21.3%), driven by an increase in the prevalence of caring for a family member or friend aged 50 and older. At the same time, care recipients have greater health and functional needs that necessitate care from others in comparison to 2015. These new 2020 data from the Caregiving in the US Survey by the National Alliance for Caregiving suggests that not only are more American adults taking on the role of caregiver, but they are doing so for increasingly complex care situations. This paper addresses the prevalence of caregiving including the demographics of family caregivers, relationship between the caregiver and the care recipient, health conditions of the care recipient, and living situations of care recipients and their caregivers.

scholarly journals Evaluating the provision of Further Enabling Care at Home (FECH+) for informal caregivers of older adults discharged home from hospital: protocol for a multicentre randomised controlled trial

BMJ Open ◽  
2021 ◽  
Vol 11 (6) ◽  
pp. e046600
Author(s):  
Anne-Marie Hill ◽  
Rachael Moorin ◽  
Susan Slatyer ◽  
Christina Bryant ◽  
Keith Hill ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Older Adults ◽  
Randomised Controlled Trial ◽  
Usual Care ◽  
Controlled Trial ◽  
Informal Caregivers ◽  
Care Recipient ◽  
Care At Home ◽  
Randomised Controlled

IntroductionThere are personal and societal benefits from caregiving; however, caregiving can jeopardise caregivers’ health. The Further Enabling Care at Home (FECH+) programme provides structured nurse support, through telephone outreach, to informal caregivers of older adults following discharge from acute hospital care to home. The trial aims to evaluate the efficacy of the FECH+ programme on caregivers’ health-related quality of life (HRQOL) after care recipients’ hospital discharge.Methods and analysisA multisite, parallel-group, randomised controlled trial with blinded baseline and outcome assessment and intention-to-treat analysis, adhering to Consolidated Standards of Reporting Trials guidelines will be conducted. Participants (N=925 dyads) comprising informal home caregiver (18 years or older) and care recipient (70 years or older) will be recruited when the care recipient is discharged from hospital. Caregivers of patients discharged from wards in three hospitals in Australia (one in Western Australia and two in Queensland) are eligible for inclusion. Participants will be randomly assigned to one of the two groups. The intervention group receive the FECH+ programme, which provides structured support and problem-solving for the caregiver after the care recipient’s discharge, in addition to usual care. The control group receives usual care. The programme is delivered by a registered nurse and comprises six 30–45 min telephone support sessions over 6 months. The primary outcome is caregivers’ HRQOL measured using the Assessment of Quality of Life—eight dimensions. Secondary outcomes include caregiver preparedness, strain and distress and use of healthcare services. Changes in HRQOL between groups will be compared using a mixed regression model that accounts for the correlation between repeated measurements.Ethics and disseminationParticipants will provide written informed consent. Ethics approvals have been obtained from Sir Charles Gairdner and Osborne Park Health Care Group, Curtin University, Griffith University, Gold Coast Health Service and government health data linkage services. Findings will be disseminated through presentations, peer-reviewed journals and conferences.Trial registration numberACTRN12620000060943.

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.

Sign in / Sign up

Export Citation Format

Share Document