Using an innovative approach, we identified research priorities in palliative care to guide future research initiatives. We searched 7databases (2005–2012) for review articles published on the topics of palliative and hospice–end-of-life care.
The identified research recommendations (n = 648) fell into 2 distinct categories: (1) ways to improve methodological approaches and (2) specific topic areas in need of future study. The most commonly cited priority within the theme of methodological approaches was the need for enhanced rigor. Specific topics in need of future study included perspectives and needs of patients, relatives, and providers; underrepresented populations; decision-making; cost-effectiveness; provider education; spirituality; service use; and inter-disciplinary approaches to delivering palliative care.
This review underscores the need for additional research on specific topics and methodologically rigorous research to inform health policy and practice.
We examine whether recently widowed mothers who needed assistance for a chronic condition, serious illness, or injury were more likely to receive care from the children they preferred as caregivers than were mothers who were divorced or had been widowed for a longer period of time.
Data were analyzed from 130 widowed or divorced mothers aged 72–83 in the second wave of the Within-Family Differences Study, all of whom reported needing assistance for a chronic condition or a serious illness or injury within 2 years prior to T2.
The findings provided evidence that recent widowhood shapes patterns of caregiving. Analyses revealed that mothers who had been widowed within 4 years were substantially more likely to receive care from adult children whom they had identified several years earlier as preferred caregivers than were mothers who were divorced or had been widowed 4 or more years.
Research has shown that mothers are at an increased risk for declining psychological well-being when caregiving preferences are not met. Findings from this study suggest that mothers who are divorced or have been widowed for several years may be at greater risk for violation of their caregiving preferences, increasing their vulnerability to declines in psychological well-being.
Widowhood; Caregiving; Parent; Adult child relations; Parental favoritism.
The emotional and physical health consequences of caring for a family member are well documented. However, although personality has been shown to affect dyadic interactions and been linked with individual outcomes for both care recipients (CRs) and caregivers (CGs), the influence of CR personality on CG health remains unexplored.
This study investigated cross-sectional associations between CRs’ five-factor personality traits and CGs’ physical and emotional health in 312 dyads of older adults with disability and their informal CGs who participated in the Medicare Primary and Consumer-Directed Care Demonstration.
Regression models controlling for CG personality, strain, and sociodemographic characteristics and CR physical impairment and pain found that agreeableness in CRs was associated with better physical health among CGs. Facet-level analyses showed specific associations between the trust and compliance facets of CR agreeableness and CG physical health. Investigation of CR personality styles revealed that the “easygoing” (N−, A+) and “well-intentioned” (A+, C−) styles predicted better CG physical health; the “leaders” (E+, A−) style had the opposite effect. No significant associations were found between CR personality and CG mental health.
Results from this study reveal the value of considering CR personality in relation to CG health and highlight the importance of assessing dispositional qualities within the context of care provision and informal assistance.
Caregiving; Chronic illness; Five-factor model personality traits; Subjective health.
Despite expansion of research on elder mistreatment, limited attention has been paid to the development of improved measurement instruments. This gap is particularly notable regarding measurement of mistreatment in long-term care facilities. This article demonstrates the value of qualitative methods used in item development of a Resident-to-Resident Elder Mistreatment (R-REM) measure for use in nursing homes and other care facilities. It describes the development strategy and the modification and refinement of items using a variety of qualitative methods.
A combination of qualitative methods was used to develop close-ended items to measure R-REM, including review by a panel of experts, focus groups, and in-depth cognitive interviews.
Information gathered from the multiple methods aided in flagging problematic items, helped to highlight the nature of the problems in measures, and provided suggestions for item modification and improvement.
The method employed is potentially useful for future attempts to develop better measures of elder mistreatment. The employment of previously established measurement items drawn from related fields, modified through an intensive qualitative research strategy, is an effective strategy to improve elder mistreatment measurement.
qualitative methods; measure development; resident-to-resident elder mistreatment; long-term care
This article describes an educational program to inform nursing and care staff in the management of resident-to-resident elder mistreatment (R-REM) in nursing homes, using the SEARCH approach. Although relatively little research has been conducted on this form of abuse, there is mounting interest in R-REM, as such aggression has been found to be extensive and can have both physical and psychological consequences for residents and staff. The aim of the SEARCH approach is to support staff in the identification and recognition of R-REM, and suggesting recommendations for management. The education program and the SEARCH approach are described. Three case studies from the research project are presented, illustrating how the SEARCH approach can be used by nurses and care staff to manage R-REM in nursing homes. Resident- and staff safety and well-being can be enhanced by the use of the evidence-based SEARCH approach.
This article examines the dialogue that occurred within the structure of a Research-to-Practice Consensus Workshop that critiqued academic research priorities regarding social isolation among community-dwelling older adults and identified practice-based suggestions for a social isolation research agenda. The investigators adapted the scientific consensus workshop model to include expert practitioners and researchers in a discussion of the current state and future directions of social isolation intervention research. The group’s critique resulted in several key recommendations for future research including the need for a social isolation measure with specific capacity to identify isolated older adults during a community crisis. This study demonstrates that the Research-to-Practice Consensus Workshop model can be used successfully to identify priority areas for research that have implications for community practice, construct an evidence base more relevant for community application, strengthen existing community–researcher partnerships, and build agency and practitioner capacity to take part in community-based participatory research.
research-to-practice; social isolation; consensus workshop
home-delivered meals; nutrition program; older persons; frailty
For home-delivered meals to have a beneficial impact on older persons, it is important that both delivery of services and use by older persons are adequate. From November 2004 to February 2005, we conducted a random-sample telephone survey of 1505 New York City home-delivered meals recipients, asking them about adequacy of and satisfaction with delivery of services and use of meal services. Fourteen percent of recipients relied solely on program food. Two-thirds prepared other foods themselves. Consumption of fruit, vegetables, and milk was low; 14–20% of recipients consumed each of these less than 1 time per day. Most recipients saw (and about half talked with) the meal deliverer most of the time. Most could contact the meal provider agency, but had not done so. A second stratified sample of 500 meal recipients was surveyed in June 2006 regarding satisfaction with food packaging and labels, food acquisition, meal delivery, and meal variety. About three-fourths of recipients reported satisfaction most of the time with the meals in terms of taste, variety, ease of preparation, healthfulness, and fit to religious or cultural needs. The most satisfied recipients were those who were receiving hot meals, food-secure, without hearing problems, frailer, in better emotional health, with informal social support, and more religious.
delivery; home-delivered meals; nutrition program; older persons
The authors examined how ambivalence toward adult children within the same family differs between mothers and fathers and whether patterns of maternal and paternal ambivalence can be explained by the same set of predictors. Using data collected in the Within-Family Differences Study, they compared older married mothers’ and fathers’ (N = 129) assessments of ambivalence toward each of their adult children (N = 444). Fathers reported higher levels of ambivalence overall. Both mothers and fathers reported lower ambivalence toward children who were married, better educated, and who they perceived to hold similar values; however, the effects of marital status and education were more pronounced for fathers, whereas the effect of children’s value congruence was more pronounced for mothers. Fathers reported lower ambivalence toward daughters than sons, whereas mothers reported less ambivalence toward sons than daughters.
ambivalence; families in middle and later life; intergenerational relations; parent – child relations
We examine the differential effects of perceived maternal and paternal favoritism in adulthood on sibling tension in adulthood.
Data used in the analysis were collected from 341 adult children nested within 137 later-life families as part of the Within-Family Differences Study.
Adult children’s perceptions that their fathers currently favored any offspring in the family predicted reports of tension with their siblings, whereas perceptions of mothers’ favoritism did not. Fathers’ favoritism was a stronger predictor of daughters’ than sons’ reports of sibling tension.
These findings contribute to a growing body of research demonstrating the consequences of parental favoritism in adulthood. Equally important, they demonstrate that perceptions of fathers’ current favoritism plays an even greater role in shaping their adult children’s sibling relations than do mothers’ favoritism.
Adult siblings; Parent-adult child relations; Parental favoritism; Within-family differences.
Purpose: Theory and research suggest that congruence between individuals’ preferences for future care and the patterns of care received will affect well-being. In this article, we explore whether older mothers’ psychological well-being was affected by the children they preferred as future caregivers and provide assistance at a later point when the mothers experience illness or injury. Design and Methods: In this article, we use a combination of quantitative and qualitative data collected from 234 older mothers at two points 7 years apart, beginning when the mothers were 65–75 years of age. Results: Multivariate analyses demonstrated that mothers who received assistance from children whom the mothers did not identify as their preferred future caregivers reported higher depressive symptoms at the second wave; receiving care from children identified as preferred caregivers did not affect well-being. Qualitative data suggested that these patterns occurred because the “alternate” caregivers did not possess the socioemotional attributes of preferred children. Implications: These findings contribute to a growing body of research demonstrating the consequences of violated preferences, particularly when individuals are in need of support in later life.
Caregiving; Parental favoritism; Inter-generational relationships; Parent-child; Social support
Little research has been conducted on aggression directed at staff by nursing home residents.
To estimate the prevalence of resident-to-staff aggression (RSA) over a 2-week period.
Prevalent cohort study.
Large urban nursing homes.
Population-based sample of 1,552 residents (80 % of eligible residents) and 282 certified nursing assistants.
Main Outcome Measures
Measures of resident characteristics and staff reports of physical, verbal, or sexual behaviors directed at staff by residents.
The staff response rate was 89 %. Staff reported that 15.6 % of residents directed aggressive behaviors toward them (2.8 % physical, 7.5 % verbal, 0.5 % sexual, and 4.8 % both verbal and physical). The most commonly reported type was verbal (12.4 %), particularly screaming at the certified nursing assistant (9.0 % of residents). Overall, physical aggression toward staff was reported for 7.6 % of residents, the most common being hitting (3.9 % of residents). Aggressive behaviors occurred most commonly in resident rooms (77.2 %) and in the morning (84.3 %), typically during the provision of morning care. In a logistic regression model, three clinical factors were significantly associated with resident-to-staff aggression: greater disordered behavior (OR = 6.48, 95 % CI: 4.55, 9.21), affective disturbance (OR = 2.29, 95 % CI: 1.68, 3.13), and need for activities of daily living morning assistance (OR = 2.16, 95 % CI: 1.53, 3.05). Hispanic (as contrasted with White) residents were less likely to be identified as aggressors toward staff (OR = 0.57, 95 % CI: 0.36, 0.91).
Resident-to-staff aggression in nursing homes is common, particularly during morning care. A variety of demographic and clinical factors was associated with resident-to-staff aggression; this could serve as the basis for evidence-based interventions. Because RSA may negatively affect the quality of care, resident and staff safety, and staff job satisfaction and turnover, further research is needed to understand its causes and consequences and to develop interventions to mitigate its potential impact.
nursing home; dementia-related behaviors; elder abuse; staff mistreatment
We developed an innovative pilot studies program to foster partnerships between university researchers and agencies serving older people in New York City. The development of researchers willing to collaborate with frontline service agencies and service agencies ready to partner with researchers is critical for translating scientific research into evidence-based practice that benefits community-dwelling older adults.
Design and Methods
We adapted the traditional academic pilot studies model to include key features of community-based participatory research.
In partnership with a network of 265 senior centers and service agencies, we built a multistep program to recruit and educate scientific investigators and agencies in the principles of community-based research and to fund research partnerships that fulfilled essential elements of research translation from university to community: scientific rigor, sensitivity to community needs, and applicability to frontline practice. We also developed an educational and monitoring infrastructure to support projects.
Pilot studies programs developing community-based participatory research require an infrastructure that can supplement individual pilot investigator efforts with centralized resources to ensure proper implementation and dissemination of the research. The financial and time investment required to maintain programs such as those at the Cornell Institute for Translational Research on Aging, or CITRA, may be a barrier to establishing similar programs.
Community-based participatory research; Investigator development; Research to practice
Prior to testing the feasibility/potential efficacy of a newly developed self-management pain program for seniors with back pain, this study sought to: 1) determine prospective consumers’ prior exposure to self-management pain programs, 2) determine their willingness to participate in the new program; and 3) ascertain perceived barriers/facilitators to program participation.
Six senior centers located in New York City.
We enrolled a race/ethnicity stratified (African American, Hispanic, or non-Hispanic White) sample of 90 subjects who were ages 60 years or older and had chronic back pain.
While 60% of non-Hispanic Whites reported prior participation in a self-management pain program, fewer Hispanic (23%) and African Americans (20%) participants reported prior participation. Most participants (80%) were strongly willing to participate in the new program. Multivariate analyses revealed that only pain intensity had a trend toward significance (p=.07), with higher pain scores associated with greater willingness to participate. Few barriers to participation were identified, however, respondents felt that tailoring the course to best meet the needs of those with physical disabilities, providing flexibility in class timing, and informing individuals about program benefits prior to enrollment could help maximize program reach. No race/ethnicity differences were identified with respect to willingness to participate or program participation barriers.
These data support efforts to disseminate self-management pain programs in older populations, particularly minority communities. The recommendations made by participants can help to guide implementation efforts of the newly developed pain program and may help to enhance both their reach and success.
A rapidly expanding number of baby boomers provide care to aging parents. This study examines associations between caregiver status and outcomes related to awareness and anticipation of future long-term care (LTC) needs using 2007 Connecticut Long-Term Care Needs Assessment survey data. Baby boomers who were adult child caregivers (n = 353) vs. baby boomers who were not (n = 1242) were more likely to anticipate some future LTC needs and to have considered certain financing strategies. Although baby boomer adult child caregivers more readily anticipate some future LTC needs, they are not taking specific actions. It is important to address the need for public education directed towards those who are currently (or have recently completed) caring for aging parents.
caregivers; successful aging; baby boomers; expectations
We employed community-based participatory research techniques to adapt an evidence-based Arthritis Self-Help Program (ASHP) for older African American, Hispanic and non-Hispanic white adults. Participants and instructors provided multiple recommendations for program changes in telephone interviews and focus groups. Recommendations were adjudicated and implemented through a collaborative, consensus-based process involving diverse stakeholders. Changes implemented show sensitivity to the preferences and needs of participants, as well as the strengths and constraints of program instructors and host sites. Improved fit for participants may extend the program’s reach and effectiveness for older adults of color. In addition, the adapted ASHP may make the program more feasible and therefore sustainable for the host sites.
Community-based participatory research; program adaptation; program implementation; race/ethnic minority populations
Chronic pain is a debilitating and pervasive health problem, particularly among older adults. Researchers and clinicians acknowledge that pain conditions do not occur in isolation, but rather exact a toll on the individual sufferer and the family system at large. No research, however, has explicitly explored the impact of older parents’ chronic pain symptoms on their adult children. In this article, we present relevant predictions from theoretical models that identify the interpersonal effects of chronic illness and pain on family relationships. Guided by theory and empirical research on these topics, we present a conceptual framework of hypothesized risk factors for adult children of parents with chronic pain. We conclude by offering an agenda for future research.
Intergenerational relationships; adult children; pain; chronic illness
To examine the effects of electronic health information technology (HIT) on nursing home residents.
The study evaluated the impact of implementing a comprehensive HIT system on resident clinical, functional, and quality of care outcome indicators, as well as measures of resident awareness of and satisfaction with the technology. The study used a prospective, quasi-experimental design, directly assessing 761 nursing home residents in 10 urban and suburban nursing homes in the greater New York City area.
No statistically significant impact of the introduction of HIT on residents was found on any outcomes, with the exception of a significant negative effect on behavioral symptoms. Residents' subjective assessment of the HIT intervention were generally positive.
The absence of effects on most indicators is encouraging for the future development of HIT in nursing homes. The single negative finding suggests that further investigation is needed on possible impact on resident behavior.
Long-Term Care; Technology; Quality of Care
Elder abuse in long term care has received considerable attention; however, resident-to-resident elder mistreatment (R-REM) has not been well researched. Preliminary findings from studies of R-REM suggest that it is sufficiently widespread to merit concern, and is likely to have serious detrimental outcomes for residents. However, no evidence-based training, intervention and implementation strategies exist that address this issue.
The objective was to evaluate the impact of a newly developed R-REM training intervention for nursing staff on knowledge, recognition and reporting of R-REM.
The design was a prospective cluster randomized trial with randomization at the unit level.
A sample of 1405 residents (685 in the control and 720 in the intervention group) from 47 New York City nursing home units (23 experimental and 24 control) in 5 nursing homes was assessed. Data were collected at three waves: baseline, 6 and 12 months. Staff on the experimental units received the training and implementation protocols, while those on the comparison units did not. Evaluation of outcomes was conducted on an intent-to-treat basis using mixed (random and fixed effects) models for continuous knowledge variables and Poisson regressions for longitudinal count data measuring recognition and reporting.
There was a significant increase in knowledge post-training, controlling for pre-training levels for the intervention group (p<0.001), significantly increased recognition of R-REM (p<0.001), and longitudinal reporting in the intervention as contrasted with the control group (p=0.0058).
A longitudinal evaluation demonstrated that the training intervention was effective in enhancing knowledge, recognition and reporting of R-REM. It is recommended that this training program be implemented in long term care facilities.
Resident-to-resident elder mistreatment (R-REM); nursing homes; long term care; older people; elder abuse; staff education; staff training
Evidence exists suggesting that most sexual aggression against older adults occurs in long-term care facilities. Fellow residents are the most common perpetrators, often due to inappropriate hypersexual behavior caused by dementing illness. This resident-to-resident sexual aggression (RRSA) is defined as sexual interactions between long-term care residents that in a community setting would likely be construed as unwelcome by at least one of the recipients and have high potential to cause physical or psychological distress in one or both of the involved. Although RRSA may be common and physical and psychological consequences for victims may be significant, this phenomenon has received little direct attention from researchers to date. We review the existing literature and relevant related research examining elder sexual abuse and hypersexual behavior to describe the epidemiologic features of this phenomenon, including risk factors for perpetrators and victims. Preventing and managing sexual aggression in nursing homes is made more challenging due to the legitimate and recognized need for nursing home residents, even those with advanced dementing illness, to sexually express themselves. We discuss the ethical dilemma this situation creates and the need to evaluate the capacity to consent to sexual activity among residents with dementing illness and to re-evaluate capacity as the diseases progress. We offer suggestions for managing RRSA incidents and for future research, including the importance of designing effective interventions.
aggressive behavior; sexual abuse; nursing homes; sexual behavior; dementia
As Baby Boomers enter late life, relationships with family members gain importance. This review article highlights two aspects of their intergenerational relationships: (a) caregiving for aging parents and (b) interactions with adult children in the context of changing marital dynamics.
Design and Methods:
The researchers describe three studies: (a) the Within Family Differences Study (WFDS) of mothers aged 65–75 and their multiple grown children (primarily Baby Boomers) ongoing since 2001; (b) the Family Exchanges Study (FES) of Baby Boomers aged 42–60, their spouses, parents, and multiple grown children ongoing since 2008; and (c) the Longitudinal Study of Generations (LSoG) of 351 three-generation families started when the Baby Boomers were teenagers in 1971, with interviews every 3–5 years from 1985 to 2005.
These studies show that the Baby Boomers in midlife navigate complex intergenerational patterns. The WFDS finds aging parents differentiate among Baby Boomer children in midlife, favoring some more than others. The FES shows that the Baby Boomers are typically more involved with their children than with their aging parents; Boomers’ personal values, family members’ needs, and personal rewards shape decisions about support. The LSoG documents how divorce and remarriage dampen intergenerational obligations in some families. Moreover, loosening cultural norms have weakened family bonds in general.
Reviews of these studies provide insights into how the Baby Boomers may negotiate caregiving for aging parents as well as the likelihood of family care they will receive when their own health declines in the future.
Baby Boomer; Caregiving; Family; Intergenerational relationships; Parent; Social support
Evidence-based interventions (EBIs) are an important tool for community health practitioners, but there is often a mismatch between the population in which the EBI was validated and the target population in which it will be used. Methods of planned adaptation identify differences in the new target population and attempt to make changes to the EBI that accommodate these differences without diluting the program’s effectiveness. This article outlines an innovative method for eliciting ideas for program modifications and deciding on program changes. The Method for Program Adaptation through Community Engagement (M-PACE) uses systematic and detailed feedback from program participants to guide adaptation. The authors describe procedures for obtaining high-quality participant feedback and adjudicating recommendations to decide on program changes. M-PACE was developed as part of the adaptation of an evidence-based, arthritis self-management program for older adults. The application and results of the M-PACE method are presented using this case as an example.
evidence-based interventions; program adaptation; cultural adaptation; community-based participatory research; self-management programs
Despite its prevalence and negative consequences, research on elder abuse has rarely considered resident-to-resident aggression (RRA) in nursing homes. This study employed a qualitative event reconstruction methodology to identify the major forms of RRA that occur in nursing homes.
Design and methods:
Events of RRA were identified within a 2-week period in all units (n = 53) in nursing homes located in New York City. Narrative reconstructions were created for each event based on information from residents and staff who were involved as well as other sources. The event reconstructions were analyzed using qualitative methods to identify common features of RRA events.
Analysis of the 122 event reconstructions identified 13 major forms of RRA, grouped under five themes. The resulting framework demonstrated the heterogeneity of types of RRA, the importance of considering personal, environmental, and triggering factors, and the potential emotional and physical harm to residents.
These results suggest the need for person-centered and environmental interventions to reduce RRA, as well as for further research on the topic.
Abuse/neglect; Behavior; Long-term care; Aggression
The goal of this paper is to demonstrate a process by which qualitative and quantitative approaches are combined to reveal patterns in the data that are unlikely to be detected and confirmed by either method alone. Specifically, we take a sequential approach to combining qualitative and quantitative data to explore race differences in how mothers differentiate among their adult children. We began with a standard multivariate analysis examining race differences in mothers’ differentiation among their adult children regarding emotional closeness and confiding. Finding no race differences in this analysis, we conducted an in-depth comparison of the Black and White mothers’ narratives to determine whether there were underlying patterns that we had been unable to detect in our first analysis. Using this method, we found that Black mothers were substantially more likely than White mothers to emphasize interpersonal relationships within the family when describing differences among their children. In our final step, we developed a measure of familism based on the qualitative data and conducted a multivariate analysis to confirm the patterns revealed by the in-depth comparison of the mother’s narratives. We conclude that using such a sequential mixed methods approach to data analysis has the potential to shed new light on complex family relations.
Maternal Differentiation; Parent-Adult Child Relations; Race; Within-Family Differences; Later Life Families; Sequential Mixed Methods Designs