Marie Y. Savundranayagam

A Dimensional Analysis of Caregiver Burden Among Spouses and Adult Children

PURPOSE OF THE STUDY Caregiver burden is a multidimensional construct, addressing tension and anxiety (stress burden), changes in dyadic relationships (relationship burden), and time infringements (objective burden) resulting from caregiving. The study aims were to assess (a) whether the dimensions of burden were the same for caregiving spouses and adult children, (b) the role of assisting with problem behaviors (PBs) and activities of daily living (ADLs) on each dimension of burden, and (c) the role of each dimension of burden on self-rated health and intention to institutionalize the care receiver. DESIGN AND METHODS This study included 280 spouse/partner and 243 adult child caregivers of persons with chronic illnesses. RESULTS Analysis using 2-group structural equation modeling showed that the factor structure of burden was equivalent for spouses and adult children. For both groups, assisting with ADLs was directly related with objective burden, whereas PBs were directly related to all dimensions of burden. For both groups, stress burden was the only predictor of self-rated health, whereas PBs were significantly linked with intention to institutionalize. However, stress burden among spouses and relationship burden among adult children were significantly linked with intention to institutionalize. IMPLICATIONS We discuss the research and practice implications of the differing needs of spouses and adult children.

Impact of Role Discrepancies on Caregiver Burden Among Spouses

Using caregiver identity theory, the authors investigated whether role discrepancies mediated the relationships between illness-related stressors (activities of daily living [ADLs] limitations and problem behaviors) and burden (stress, relationship, and objective burden) for spouse caregivers. Participants completed measures of identity standards for spouse and caregiver roles and behaviors, burden, assistance with ADLs, and problem behaviors. Structural equation modeling analyses revealed that role discrepancies completely mediated the relationships between ADLs and stress and relationship burden. Although role discrepancies mediated the relationships between problem behaviors and all forms of burden, there were direct relationships between problem behaviors and burden. Finally, participants who exceeded their relationship identity standards experienced greater burden. Supporting caregiver identity theory, the results suggest that ADL assistance is burdensome for caregivers when it highlights inconsistencies between their behaviors and their relationship expectations. However, unpredictable stressors such as problem behaviors are both inherently burdensome and highlight role discrepancies.

Impact of a psychoeducational program on three types of caregiver burden among spouses

The purpose of this study was to investigate the extent to which a psychoeducational intervention called “Powerful Tools for Caregivers” (PTC) influences burden of spouse caregivers. Specifically, this study examined whether spouse caregivers who attended PTC exhibited reductions in stress burden, relationship burden, and objective burden compared to a comparison group.

Receiving while giving: The differential roles of receiving help and satisfaction with help on caregiver rewards among spouses and adult-children

There is a growing body of literature on the rewards associated with caregiving and the utility of these rewards on buffering the negative consequences of caring for a family member with Alzheimers disease. Many psychoeducational interventions aim to empower caregivers to seek and obtain help from their social support network, with the expectation that help will enable them to cope more effectively.

Testing Self-Efficacy as a Pathway That Supports Self-Care Among Family Caregivers in a Psychoeducational Intervention

This study investigated the extent to which a psychoeducational intervention supports family-centered care by influencing health risk and self-care behaviors of caregivers of individuals with Alzheimers disease (N = 325). Moreover, this study investigated the extent to which changes in self-efficacy explained changes in health risk and self-care behaviors. Data were analyzed using repeated measures and multivariate analysis of variance and multiple regression. Qualitative written accounts of the impact of the intervention augmented the quantitative findings. The studys findings revealed that family caregivers experienced reductions in health risk behaviors and improvements in exercise, stress management, and relaxation activities as a result of participating in the psychoeducational intervention. Improvement in self-efficacy was linked with reductions in health risk behaviors and increased involvement in stress management and relaxation activities. Implications are discussed in terms of the need to understand the mechanisms by which interventions influence family caregivers and the role these mechanisms play in supporting family-centered care.

Toward a Mixed-Methods Research Approach to Content Analysis in The Digital Age: The Combined Content-Analysis Model and its Applications to Health Care Twitter Feeds

Background Twitter’s 140-character microblog posts are increasingly used to access information and facilitate discussions among health care professionals and between patients with chronic conditions and their caregivers. Recently, efforts have emerged to investigate the content of health care-related posts on Twitter. This marks a new area for researchers to investigate and apply content analysis (CA). In current infodemiology, infoveillance and digital disease detection research initiatives, quantitative and qualitative Twitter data are often combined, and there are no clear guidelines for researchers to follow when collecting and evaluating Twitter-driven content. Objective The aim of this study was to identify studies on health care and social media that used Twitter feeds as a primary data source and CA as an analysis technique. We evaluated the resulting 18 studies based on a narrative review of previous methodological studies and textbooks to determine the criteria and main features of quantitative and qualitative CA. We then used the key features of CA and mixed-methods research designs to propose the combined content-analysis (CCA) model as a solid research framework for designing, conducting, and evaluating investigations of Twitter-driven content. Methods We conducted a PubMed search to collect studies published between 2010 and 2014 that used CA to analyze health care-related tweets. The PubMed search and reference list checks of selected papers identified 21 papers. We excluded 3 papers and further analyzed 18. Results Results suggest that the methods used in these studies were not purely quantitative or qualitative, and the mixed-methods design was not explicitly chosen for data collection and analysis. A solid research framework is needed for researchers who intend to analyze Twitter data through the use of CA. Conclusions We propose the CCA model as a useful framework that provides a straightforward approach to guide Twitter-driven studies and that adds rigor to health care social media investigations. We provide suggestions for the use of the CCA model in elder care-related contexts.

Language-based communication strategies that support person-centered communication with persons with dementia.

BACKGROUND There are many recommended language-based strategies for effective communication with persons with dementia. What is unknown is whether effective language-based strategies are also person centered. Accordingly, the objective of this study was to examine whether language-based strategies for effective communication with persons with dementia overlapped with the following indicators of person-centered communication: recognition, negotiation, facilitation, and validation. METHODS Conversations (N = 46) between staff-resident dyads were audio-recorded during routine care tasks over 12 weeks. Staff utterances were coded twice, using language-based and person-centered categories. There were 21 language-based categories and 4 person-centered categories. RESULTS There were 5,800 utterances transcribed: 2,409 without indicators, 1,699 coded as language or person centered, and 1,692 overlapping utterances. For recognition, 26% of utterances were greetings, 21% were affirmations, 13% were questions (yes/no and open-ended), and 15% involved rephrasing. Questions (yes/no, choice, and open-ended) comprised 74% of utterances that were coded as negotiation. A similar pattern was observed for utterances coded as facilitation where 51% of utterances coded as facilitation were yes/no questions, open-ended questions, and choice questions. However, 21% of facilitative utterances were affirmations and 13% involved rephrasing. Finally, 89% of utterances coded as validation were affirmations. CONCLUSIONS The findings identify specific language-based strategies that support person-centered communication. However, between 1 and 4, out of a possible 21 language-based strategies, overlapped with at least 10% of utterances coded as each person-centered indicator. This finding suggests that staff need training to use more diverse language strategies that support personhood of residents with dementia.

StoryCorps’ Memory Loss Initiative: Enhancing personhood for storytellers with memory loss

StoryCorps’ Memory Loss Initiative was designed to gather oral histories of people with memory loss. This study investigated the StoryCorps interview experience for storytellers who self identify with early stage memory loss and the persons who interviewed them. StoryCorps interviews took place in Milwaukee, Chicago, and New York. Follow-up interviews were conducted with 42 persons with memory loss, along with 27 family members who participated in the StoryCorps interviews. Results revealed that the StoryCorps experience was a meaningful activity that allowed participants to acknowledge the beauty of the present moment, to reflect and engage in meaningful conversations, to re-affirm both the selfhood of individuals with memory loss and their relationships with family members, and to and be a part of national history while leaving a legacy for future generations within families. The findings are discussed within the context of personhood enhancing strategies for persons with memory loss.

Characteristics of Creative Expression Activities: The Links Between Creativity, Failure-Free, and Group Process With Levels of Staff-Participant Engagement and Participant Affect in an Adult Day Center

The goal of this study was to assess the relationship between three characteristics identified as central to creative expression (CE) activities: creativity, failure-free, and group process with staff-participant engagement and participant affect. An observational study was conducted in an adult day center. Staff-participant interactions (n = 241) were recorded as they participated in sculpture, which is a type of CE activity, and 12 different traditional activities. MANOVA tests revealed that levels of engagement were greater when participants were involved in activities that included the three traits. Greater levels of positive affect were observed when participants were involved in activities that included creativity or group process.

Person-Centered Care: Measurement, Implementation, and Outcomes

Person-centered care incorporates the unique life history of older adults, and emphasizes relationships and communication. The past two decades have seen a rise in a desire to transform care of older adults from task-centered to person-centered. However, there is a dearth of empirical research on measuring and implementing person-centered approaches. In addition, there is limited research on measures and methods to assess the impact of person-centered care. In other words, how would one know if an older adult is receiving person-centered care? Accordingly, the goal of this special issue is to advance the existing literature by highlighting original research papers that address measurement, implementation, and outcomes of person-centered care. The special issue begins with an article by Mast that discusses the need to improve dementia assessment, which is the basis for better care. A poor assessment can negatively impact subsequent care plans for persons with dementia. What will be of most relevance to practitioners is that Mast discusses the use of existing diagnostic tools as a means to conduct person-centered assessments of persons with Alzheimer’s disease or a related dementia. He makes a compelling case for using the abilities of persons with dementia during assessment in an effort to avoid downplaying or withdrawing behaviors by persons with dementia. Such behaviors may lead to assessments that undervalue the existing abilities of persons with dementia. The remaining articles in the special issue focus specifically on the nursing home context. The nursing home context poses significant threats to