Strategies for Sustaining Self Used by Family Caregivers for Older Adults With Dementia

The negative health consequences of caring for an older adult family member with dementia are well documented. However, not all family caregivers experience these negative health consequences. The purposes of this study were to describe strategies family caregivers use to help them continue to provide care for an older family member with dementia despite challenges and describe these family caregivers’ resilience and psychological distress. A mixed methods design was used with a narrative approach dominant and standardized scales for resilience and psychological distress used to enhance the description of the sample. Data were collected through telephone interviews with 18 family caregivers residing in an urban area. The findings indicate that family caregivers used four strategies to sustain the self: drawing on past life experiences, nourishing the self, relying on spirituality, and seeking information about dementia. Understanding strategies used by family caregivers to sustain themselves is essential for providing holistic nursing care and developing effective interventions

Educating Family Caregivers for Older Adults About Delirium: A Systematic Review

Background Delirium in older adults is considered a medical emergency; it contributes to a cascade of functional decline and to increased mortality. Early recognition of delirium symptoms is critical to prevent these negative consequences. Family caregivers who are educated about delirium could partner with nurses and other healthcare professionals in early recognition of delirium symptoms. Before implementing such partnership models, it is important to examine the effectiveness of educating family caregivers about delirium. Aims To examine whether providing education on delirium to family caregivers improved their knowledge, emotional state, or response in reducing the incidence of delirium in older adults. Methods For this systematic review, we conducted literature searches in CINAHL, Cochrane Library, Medline, PsycINFO, Web of Science, Social Sciences in ProQuest, Dissertations and Theses, and the Virginia Henderson Global Nursing eRepository for studies published in the English language between January 2000 and June 2015. Criteria for inclusion were: (a) primary focus on educating family caregivers for older adults about delirium; (b) use of experimental, quasi-experimental, or comparative design; (c) measured family caregiver outcomes of delirium knowledge, emotional state, or response in reducing delirium incidence in older adults; and (d) published in the English language. Articles were appraised using Melnyk\u27s rapid critical appraisal guides. Results Seven studies met the review criteria. Four studies found that family caregivers’ delirium knowledge increased; two noted that delirium incidence in older adults declined; and one study reported less distress following receipt of education. Linking Evidence to Action Providing family caregivers with information about delirium can be beneficial for both family caregivers and older adults. However, rigorous evaluation of education programs for family caregivers about delirium is needed

Family Caregivers’ Knowledge of Delirium and Preferred Modalities for Receipt of Information

Delirium is a life-threatening, frequently reversible condition that is often a sign of an underlying health problem. In-hospital mortality alone for older adults with delirium ranges from 25% to 33%. Early recognition of delirium is critical because prolonged duration poses a greater risk of poor functional outcomes for older adults. Family caregivers, who are familiar with the older adult’s usual behaviors, are most likely to recognize delirium symptoms but might dismiss them as due to aging. It is important to learn what family caregivers know about delirium to ascertain their need for education. The aims of this study were to describe family caregivers’ knowledge of delirium and preferred modalities for receipt of information about delirium. A cross-sectional design was used for this study and a survey distributed to family caregivers for older adults. Analysis of 134 usable surveys indicated that family caregivers need and want information about delirium. The preferred modalities for receipt of information included Internet, in-person classes, and newsletters

Effect of Self-Efficacy Enhancing Education Program on Family Caregivers\u27 Competencies in Caring for Patients with Mild Traumatic Brain Injury in YOGYAKARTA, Indonesia

Purpose: This study was conducted to examine the effect of a self-efficacy enhancing education program on family caregivers\u27 competencies regarding perceived confidence and performance in caring for patients with mild TBI in Yogyakarta, Indonesia. Methods: The quasi-experimental study, two groups pre-test and post-test design was conducted. Fifty family caregivers and patients with mild TBI who met the inclusion criteria were recruited. The first 25 control group received the routine care were, while another 25 subjects in the experimental group received a self-efficacy enhancing education program developed by the researchers. The program was constructed using Bandura\u27s four sources of self-efficacy. The family caregivers\u27 perceived confidence and performance were measured by using the Perceived Confidence Questionnaire (PCQ) and the Performance Questionnaire (PQ). The data were analyzed using paired t-test, independent t-test, Wilcoxon Signed Rank test, and Mann-Whitney U test. Results: The findings showed that the family caregivers who participated in the program had a higher in perceived confidence (t = 8.30, p < .05) and performance (U = .00, p < .05) in caring for patients with mild TBI upon the completion of the program. Conclusion: This study suggests the program may have contributed in improving the family caregivers\u27 competencies regarding perceived confidence and also influencing their performance in caring for patients with mild TBI. Therefore, this program is recommended for nurses to extend this knowledge for nursing practices and improve family caregivers\u27 competencies in caring for patients with mild TBI before and after discharge

Psychometric Properties of the Family Caregiver Delirium Knowledge Questionnaire

A valid, reliable measure of family caregivers’ knowledge about delirium was not located in the literature; such an instrument is essential to assess learning needs and outcomes of education provided. The purpose of the current study was to (a) develop a family Caregiver Delirium Knowledge Questionnaire (CDKQ) based on the Symptom Interpretation Model; and (b) establish validity and reliability of the measure. The 19-item CDKQ was developed and administered to 164 family caregivers for community-dwelling older adults. Descriptive statistics were examined for all variables. Psychometric testing included confirmatory factor analysis, item-to-total correlations, and internal consistency reliability. A three-factor model provided the best fit for the data. The findings support initial validity and reliability of the CDKQ with family caregivers. Although the CDKQ was developed for use with family caregivers, it has potential for use with other caregivers, such as home health aides

Public Health Model Identifies Recruitment Barriers among Older Adults with Delirium and Dementia

Recruiting older adults and their family caregivers into research studies presents challenges. Although the literature notes some general recruitment challenges, no studies specifically address the unique challenges of recruiting older adults who have Alzheimer\u27s Disease (AD) and their family caregivers in studies about delirium or suggest using a framework to identify barriers to recruiting this population. In conducting a pilot study about preparing family caregivers to detect delirium symptoms in older adults with (AD) the researchers used the Public Health Model for identifying barriers to recruitment. The goals of this methodological article are to: (1) briefly describe the methodology of the pilot study to illustrate how the Public Health Model was applied in the context of the present study and (2) discuss the benefits of the Public Health Model for identifying the barriers to recruitment in a study that prepared family caregivers to detect delirium symptoms in older adults with AD. The Public Health Model helped us to identify four specific barriers to recruitment (lack of knowledge about delirium, desire to maintain normalcy, protective caregiving behaviors, and older adult\u27s fears) and ways to overcome them. The Public Health Model might also help other researchers address similar issues

Review: Burden on Family Caregivers Caring for Patients with Schizophrenia and Its Related Factors

Background: Family caregiver is the most important person who cares for patient with schizophrenia. However when care is provided for long time, he/she may experiences the burden.Purpose: The purpose was to review concept and factors related to burden on family caregivers caring for patients with schizophrenia.Method: A literatures were searched from databases: Pubmed, CINAHL, and Science Direct. Key words used to retrieve literature include caregiver burden and schizophrenia. Searching was limited in English language, full text, and the year of publication from 2000 to 2009 was used.Results: Twenty two studies were reviewed in this paper. The result showed that the caregivers caring for patients with schizophrenia experience burden. Burden was defined as a negative impact of caring for the impaired person experienced by caregiver on their activity (objective burden) or feeling (subjective burden) that involves emotional, physical health, social life, and financial status. Factors related to burden on family caregiver were grouped into: 1) caregiver‟s factors included age, gender, educational level, income, health status, and spent time per day, knowledge of schizophrenia, culture, and coping; 2) patient‟s factors included age, clinical symptoms, and disability in daily life; 3) environmental factors included mental health service and social support.Conclusion: Definition of burden have quite same meaning and mostly factors focus on the patient‟s symptoms, demographic factors of caregiver, and time spent per day. Most of studies cannot be generalized due to small sample used in the study and that too conducted in western countries. For further research, the correlation between burden and resources of family caregiver should be investigated particularly in eastern country

Design and introduction of a quality of life assessment and practice support system: perspectives from palliative care settings

Background: Quality of life (QOL) assessment instruments, including patient-reported outcome measures (PROMs) and patient-reported experience measures (PREMs), are increasingly promoted as a means of enabling clinicians to enhance person-centered care. However, integration of these instruments into palliative care clinical practice has been inconsistent. This study focused on the design of an electronic Quality of Life and Practice Support System (QPSS) prototype and its initial use in palliative inpatient and home care settings. Our objectives were to ascertain desired features of a QPSS prototype and the experiences of clinicians, patients, and family caregivers in regard to the initial introduction of a QPSS in palliative care, interpreting them in context. Methods: We applied an integrated knowledge translation approach in two stages by engaging a total of 71 clinicians, 18 patients, and 17 family caregivers in palliative inpatient and home care settings. Data for Stage I were collected via 12 focus groups with clinicians to ascertain desirable features of a QPSS. Stage II involved 5 focus groups and 24 interviews with clinicians and 35 interviews with patients or family caregivers during initial implementation of a QPSS. The focus groups and interviews were recorded, transcribed, and analyzed using the qualitative methodology of interpretive description. Results: Desirable features focused on hardware (lightweight, durable, and easy to disinfect), software (simple, user-friendly interface, multi-linguistic, integration with e-health systems), and choice of assessment instruments that would facilitate a holistic assessment. Although patient and family caregiver participants were predominantly enthusiastic, clinicians expressed a mixture of enthusiasm, receptivity, and concern regarding the use of a QPSS. The analyses revealed important contextual considerations, including: (a) logistical, technical, and aesthetic considerations regarding the QPSS as a technology, (b) diversity in knowledge, skills, and attitudes of clinicians, patients, and family caregivers regarding the integration of electronic QOL assessments in care, and (c) the need to understand organizational context and priorities in using QOL assessment data. Conclusion: The process of designing and integrating a QPSS in palliative care for patients with life-limiting conditions and their family caregivers is complex and requires extensive consultation with clinicians, administrators, patients, and family caregivers to inform successful implementation

Grief Experiences in Family Caregivers of Children with Autism Spectrum Disorder (ASD)

The main objective of this study was to analyse the experience of grief and feelings of loss in family caregivers of children diagnosed with autism spectrum disorder (ASD), as well as the perceived overload from taking on the primary caregiver role. Twenty family caregivers of children with ASD participated. The family members were assessed using an ad-hoc semi-structured interview that addressed the families' reactions to the diagnosis, implications for daily functioning, and concerns for the immediate and long-term future of their relatives with ASD. The results indicate that family caregivers of children with ASD endure intense and continuous sorrow and grief due to the impact that having and caring for a child with these characteristics has on all aspects of their lives. These data highlight the importance of creating support and intervention programmes and services focused on the feelings and manifestations of ambiguous grief that occur in these family members, in order to improve their well-being and quality of life and reduce caregiver role overload

The applicability of the decisional conflict scale in nursing home placement decision among Chinese family caregivers: A mixed methods approach

This study aimed to 1) examine relationships between uncertainty, perceived information, personal values, social support, and filial obligation among Chinese family caregivers faced with nursing home placement of an older adult family member with dementia; and 2) describe the applicability of the Decisional Conflict Scale in nursing home placement decision making among Chinese family caregivers through the integration of quantitative and qualitative data. We used a mixed-methods approach. Quantitative data analysis consisted of descriptive and correlational statistics. We utilized a thematic analysis for the qualitative data. Data transformation and data comparison techniques were used to combine qualitative and quantitative data. Thirty Chinese family caregivers living in Taiwan caring for an older adult with dementia participated in this study. We found a significant association among the quantitative findings, which indicated that perceived information, personal values, social support, and filial obligation, and nursing home placement decisional conflict. Mixed-method data analysis additionally revealed that conflicting differences existed between the traditional role of Chinese family collective decision making and the contemporary role of single family member surrogate decision making. Although the Decisional Conflict Scale can be utilized when exploring nursing home placement for an older adult with dementia among Chinese family caregivers, applicability issues existed regarding cultural beliefs and values related to filial piety and family collectivism. Findings strongly support the need for researchers to consider cultural beliefs and values when selecting tools that assess health-related decision making across cultures. Further research is needed to explore the role culture plays in nursing home decision making