Factors affecting user participation for elderly people with dementia living at home: a critical interpretive synthesis of the literature

ABSTRACT

Professional caregivers are expected to facilitate user participation for people with dementia. At the same time, an increasing number of elderly people with dementia are now being cared for at their homes. Research is scarce on user participation for people with dementia, especially for people with dementia who live at home. This article aims to systematically and critically review the factors affecting user participation for elderly people with dementia living at home from the viewpoint of the patients, family caregivers, professional caregivers and researchers. A systematic literature search and critical interpretive synthesis were conducted. The search yielded 1,957 articles. In total, 112 full-text articles were retrieved, of which 27 met the inclusion criteria. Five broad analytical themes were identified during the analysis: individual characteristics, professional caregiver characteristics, decision characteristics, relational characteristics and organisational characteristics. The results show that the value placed on user participation can differ between family caregivers and professional caregivers. People with dementia still experience stigmatisation, preventing user participation, and relations with both family and professional caregivers play a key role in enabling user participation for people with dementia.     

The Vulnerability for Elder Abuse Among a Sample of Custodial Grandfathers: An Exploratory Study

ABSTRACT

Older adults have been known to make sacrifices in their caregiving roles. Gerontology literature on custodial grandparents has primarily focused on grandmothers and the challenges they face when they assume primary care for grandchildren. Little is known about the risks that older men face when they become custodial grandparents. This article highlights types and warning signs of abuse, exploitation and neglect. Exploratory study was undertaken with a racially diverse group of custodial grandfathers to fill a gap in the literature about the vulnerability for elder abuse, exploitation and neglect as expressed by older Black, Latino and White custodial grandfathers. To provide a more inclusive understanding of elder abuse, areas of vulnerability were identified for consideration by practitioners, educators and researchers. The implications of this research point to the need to rethink elder abuse assessment, prevention and intervention strategies with older men.     

The vulnerablility for elder abuse among a sample of custodial grandfathers: an exploratory study

Older adults have been known to make sacrifices in their caregiving roles. Gerontology literature on custodial grandparents has primarily focused on grandmothers and the challenges they face when they assume primary care for grandchildren. Little is known about the risks that older men face when they become custodial grandparents. This article highlights types and warning signs of abuse, exploitation and neglect. Exploratory study was undertaken with a racially diverse group of custodial grandfathers to fill a gap in the literature about the vulnerability for elder abuse, exploitation and neglect as expressed by older Black, Latino and White custodial grandfathers. To provide a more inclusive understanding of elder abuse, areas of vulnerability were identified for consideration by practitioners, educators and researchers. The implications of this research point to the need to rethink elder abuse assessment, prevention and intervention strategies with older men.     

A Summary of Selective Experimental Research on Psychosocial Interventions for Sexually Abused Children

This study was conducted to explore current trends in psychosocial interventions for sexually abused children through a review of recent research. Our comprehensive review is limited to published (quasi) experimental studies in the English language over a period of 2000–2013. It provides a detailed analysis of the final 18 articles that met our inclusion criteria, from the 670 potentially relevant articles that were identified. Reviewers analyzed candidate articles to determine whether they met inclusion or exclusion criteria. The retrieved studies reported positive results with respect to improvements in the negative psychosocial sequelae of child sexual abuse following the use of a diverse set of treatment strategies. Of the various interventions, cognitive behavioral therapy was shown to be the most promising type of intervention for sexually abused children. In this review, we discuss some of the implications of psychosocial interventions for victims of child sexual abuse, citing both the methodological and ethical issues that should be considered.     

Abuse and Disabled People: Vulnerability or social indifference?

This paper analyses current literature surrounding issues of abuse and disability, and discusses whether the forms of abuse experienced by disabled people results from an individual vulnerability, or as a consequence of social attitudes towards disabled people. Three case studies form supportive evidence, and have been compiled from personal research, they represent a combination of abusive features, rather than any one individuals situation. The study hopes not to suggest that all disabled people are especially vulnerable to abuse, but asks if society and existing welfare services acknowledge and respond to allegations of abuse without prejudice to disability. This study formed my dissertation paper as a student on the BA (Hons) Social Work and Welfare Studies at the University of Central Lancashire, and I would like to thank my dissertation tutor, Bob Sapey, for his guidance and support throughout the study.     

Influences on registered nurses' decision‐making in cases of suspected child abuse

This paper reports on the factors influencing decision‐making for a group of 10 South Australian community nurses in cases of suspected child abuse. Each nurse participated in a structured interview. The data were organized into themes, using the computer program NUD*IST. Factors having an impact on the nurses' decisions to report included: the type of suspected abuse, making moral judgements and decision‐making, the consequences of reporting, and the impact versus the outcomes of reporting. Most significantly, the community nurses based many of their decisions on their estimation of the kind of intervention likely to be undertaken by children's protection services. Copyright © 2002 John Wiley & Sons, Ltd.     

Physical abuse of older adults in nursing homes: a random sample survey of adults with an elderly family member in a nursing home

Few empirical studies have focused on elder abuse in nursing home settings. The present study investigated the prevalence and risk factors of staff physical abuse among elderly individuals receiving nursing home care in Michigan. A random sample of 452 adults with elderly relatives, older than 65 years, and in nursing home care completed a telephone survey regarding elder abuse and neglect experienced by this elder family member in the care setting. Some 24.3% of respondents reported at least one incident of physical abuse by nursing home staff. A logistic regression model was used to estimate the importance of various risk factors in nursing home abuse. Limitations in activities of daily living (ADLs), older adult behavioral difficulties, and previous victimization by nonstaff perpetrators were associated with a greater likelihood of physical abuse. Interventions that address these risk factors may be effective in reducing older adult physical abuse in nursing homes. Attention to the contextual or ecological character of nursing home abuse is essential, particularly in light of the findings of this study.     

Physical Abuse of Older Adults in Nursing Homes: A Random Sample Survey of Adults With an Elderly Family Member in a Nursing Home

Few empirical studies have focused on elder abuse in nursing home settings. The present study investigated the prevalence and risk factors of staff physical abuse among elderly individuals receiving nursing home care in Michigan. A random sample of 452 adults with elderly relatives, older than 65 years, and in nursing home care completed a telephone survey regarding elder abuse and neglect experienced by this elder family member in the care setting. Some 24.3% of respondents reported at least one incident of physical abuse by nursing home staff. A logistic regression model was used to estimate the importance of various risk factors in nursing home abuse. Limitations in activities of daily living (ADLs), older adult behavioral difficulties, and previous victimization by nonstaff perpetrators were associated with a greater likelihood of physical abuse. Interventions that address these risk factors may be effective in reducing older adult physical abuse in nursing homes. Attention to the contextual or ecological character of nursing home abuse is essential, particularly in light of the findings of this study.     

Searching for elder abuse: a systematic review of database citations

The aim of this review was to describe trends and patterns in elder abuse literature and research. All citations in PUB MED, CINAHL, and PsycINFO databases located using the search term "elder abuse" were retrieved (3,059 citations) and 2,418 unique references were identified. Using manifest content analysis, non-research material (1,986 references) was sorted by type and research references (34 dissertations and 398 research articles) were categorized. Research article references most commonly: (1) investigated prevalence, typology, and definitions of elder abuse; (2) utilized quantitative methodology; (3) had first author affiliations to medicine, nursing, and social sciences; and (4) sampled populations of professionals, personnel, cases, or charts. The USA was most frequently listed of 24 identified countries of origin. Elder abuse research shows lack of diversity, slow increase of qualitative research, limited involvement of older persons and family members as participants, and minimal research from developing countries. This review contributes to knowledge valuable for researchers and experts planning future studies or elder abuse projects.     

Searching for Elder Abuse: A Systematic Review of Database Citations

ABSTRACT

The aim of this review was to describe trends and patterns in elder abuse literature and research. All citations in PUB MED, CINAHL, and PsycINFO databases located using the search term “elder abuse” were retrieved (3,059 citations) and 2,418 unique references were identified. Using manifest content analysis, non-research material (1,986 references) was sorted by type and research references (34 dissertations and 398 research articles) were categorized. Research article references most commonly: (1) investigated prevalence, typology, and definitions of elder abuse; (2) utilized quantitative methodology; (3) had first author affiliations to medicine, nursing, and social sciences; and (4) sampled populations of professionals, personnel, cases, or charts. The USA was most frequently listed of 24 identified countries of origin. Elder abuse research shows lack of diversity, slow increase of qualitative research, limited involvement of older persons and family members as participants, and minimal research from developing countries. This review contributes to knowledge valuable for researchers and experts planning future studies or elder abuse projects.     

Can balance exercise programmes improve balance and related physical performance measures in people with dementia? A systematic review

This review presents the physical performance outcomes of randomised trials investigating exercise programmes that included balance exercise for older people with dementia. A systematic literature search through five computerised bibliographic databases until February 2009 was carried out. Of 1,038 potentially relevant published articles, only seven met the inclusion criteria and were extracted. Findings from the review for a total of 632 participants showed that almost all of the included studies addressed exercise or physical activities as the main intervention; however, only two of the studies focused on balance exercise. The effect size values varied from no effect (0.00) to a large effect (3.29) of the interventions for a range of physical performance outcome measures. Findings also suggest that it is feasible to conduct exercise programmes with older people with dementia. However, further studies with more specific exercise designed to improve balance performance in order to prevent falls are required for older people with dementia.     

U.S. Population Estimates and Correlates of Sexual Abuse of Community-Dwelling Older Adults

We describe the annual prevalence of sexual abuse among community-dwelling older adults in the United States. We also describe factors associated with experiencing sexual abuse. We used data from 24,343 older adults from the 2005 Behavioral Risk Factor Surveillance System pooled across 18 states. We estimated prevalence of sexual abuse, bivariate distributions, and odds ratio associations across demographic, health, and contextual factors. Our results show that 0.9% of older adults reported experiencing sexual abuse in the previous year. This represents approximately 90,289 community-dwelling older adults. We also report on factors associated with experiencing recent sexual abuse. There was a significant gender by binge drinking interaction, with a stronger association among women. There is a need for health promotion efforts targeted specifically toward older adults, encouraging them to seek services, if possible, after exposure to sexual abuse.     

When Injustice Gets Old: A Systematic Review of Trans Aging

A lack of knowledge regarding the needs and experiences of trans and gender-nonconforming older adults contributes to and perpetuates the experiences of marginalization associated with being trans. Mitigating the conditions of marginalization—including those that are compounded by age—requires the production of trans aging knowledge. It was with the intent to produce such knowledge that this systematic review was undertaken. In so doing, five medical databases, eight social science databases, and two gray literature databases were searched. These included the following: CINAHL (1942–), Medline (1942–), Health Services/Technology Assessment Texts, Web of Science, EMBASE (1947–), Sociological Abstracts (1952), Social Services Abstracts (1806–), Gender Studies Database (1972–), LGBT Life with Full Text, Ageline (1978–), PsycINFO (1806–), Scopus, ERIC, The New York Academy of Medicine Grey Literature Report, and Dissertations & Theses: Full Text. A total of 436 titles and abstracts were independently reviewed. Of these, 106 full-text articles were retrieved; 34 met the inclusion criteria and were reviewed. The following themes were identified: 1. the methodological challenges associated with conducting research with trans and gender nonconforming older adults;

2. violence and abuse among trans and gender nonconforming older adults;

3. discriminatory policies and practices in health and mental health care;

4. the lack of appropriate HIV/AIDS education, prevention, and treatment strategies for trans and gender nonconforming older adults;

5. obstacles in education, employment, government systems, and housing; and

6. the lack of adequate social support networks.

Gaps in the literature, recommendations for future research, and implications for policy and practice were also identified.     

Understanding decisions about child maltreatment

To understand how decisions are made in abuse/neglect cases by the child welfare system, the authors asked child welfare experts and protective service line workers to make decisions about actual child abuse and neglect cases on the basis of written summaries of the cases. Respondents included 27 experts and 103 line workers. Regression analyses found that workers and experts emphasized the same case characteristics in making their decisions, but the decisions were not well structured in the sense that they were not well predicted by case characteristics. Individual experts and workers varied widely in the decisions they made on identical cases. The authors conclude that decision making in the child protective system is inconsistent, with errors of two kinds: failing to remove children from their families when that is called for and removing children when it is unnecessary. Progress must be made in developing decision-making criteria that are consistent, preserve family integrity, and promote the well-being of children.     

Gendered uncertainty and variation in physicians' decisions for coronary heart disease: the double-edged sword of "atypical symptoms"

Nonmedical factors and diagnostic certainty contribute to variation in clinical decision making, but the process by which this occurs remains unclear. We examine how physicians' interpretations of patient sex-gender affect diagnostic certainty and, in turn, decision making for coronary heart disease. Data are from a factorial experiment of 256 physicians who viewed 1 of 16 video vignettes with different patient-actors presenting the same symptoms of coronary heart disease. Physician participants completed a structured interview and provided a narrative about their decision-making processes. Quantitative analysis showed that diagnostic uncertainty reduces the likelihood that physicians will order tests and medications appropriate for an urgent cardiac condition in particular. Qualitative analysis revealed that a subset of physicians applied knowledge that women have "atypical symptoms" as a generalization, which engendered uncertainty for some. Findings are discussed in relation to social-psychological processes that underlie clinical decision making and the social framing of medical knowledge.     

Constructions of ‘vulnerability’ in comparative perspective: Scottish protection policies and the trouble with ‘adults at risk’

This paper places Scottish adult support and protection (ASP) policy in the context of debates about the nature of ‘vulnerability’ and its usefulness as a defining concept in law and social policy. It examines the construction of ‘adults at risk’ in ASP policy, using a comparison with the construction of children in Scottish child protection policy, on the one hand, and women in Scottish domestic abuse policy, on the other, to illuminate the nature of the vulnerability that ASP considers itself to be addressing. It then problematises this construction, drawing both on the social model of disability and on an ethic of care. It concludes that current ASP policy remains underpinned by unhelpful assumptions about disabled people, older people and people with mental or physical health problems. A more inclusive understanding of vulnerability would be more empowering to these people and others, in policies concerned with mistreatment and abuse.     

Staff responses to age‐related health changes in people with an intellectual disability in group homes

The purpose of this study was to explore how supervisors in group homes caring for people with intellectual disability responded to the development of age‐related health changes in their residents. Ten group home supervisors working in the disability sector were interviewed once. Data were analysed using Dimensional Analysis. The study identified several factors related to whether a resident could stay ‘at home’ or would need to be moved to residential aged care (nursing home) including: nature and extent of group home resources, group home staff comfort with residents’ health changes, staff skill at navigating the intersection between the disability and ageing sectors, and the supervisor’s philosophy of care. The ability of older people with an intellectual disability to ‘age in place’ is affected by staff knowledge about and comfort with age‐related illnesses, staff skills at navigating formal services, staffing flexibility, and the philosophy of group home supervisors. Despite the growing international concern for the rights of people with disability, particularly in relation to decision making, questions about the older person’s choice of residence and participation in decision making about what was best for them, were almost nonexistent. Rather, decisions were made based on what was considered to be in ‘the best interest’.     

Problem Gambling and Delinquent Behaviours Among Adolescents: A Scoping Review

Despite many studies indicating an association between problem gambling and delinquent behaviours among adolescents, there has been no effort to systematically analyze the state of the literature on this relationship. To fill this gap, we conducted a scoping review of the literature published between 2000 and 2016 on problem gambling and delinquent behaviours among adolescents. We searched twelve databases and reviewed reference lists to identify eligible studies. Search terms included a combination of medical subject headings and keywords for gambling, youth, and delinquency, which were combined with the Boolean operator “AND”. 1795 studies were identified through the literature search. Nine studies were eligible for inclusion. All of the studies were conducted in North America, with primarily male participants, and most of the data were cross-sectional. No qualitative studies met the inclusion criteria. Screening tools used to measure problem gambling were inconsistent, making comparisons across studies difficult. We found a consistent moderate to strong association between problem gambling and delinquent behaviour. Only one study presented associations by socio-economic status and none considered gender, sex or ethnic differences. Studies in the review showed that problem gambling is associated with both violent and non-violent behaviours among adolescents. These associations may suggest that problem gambling and delinquent behaviours have common risk factors and reflect a syndrome of risky behaviours best targeted through prevention and treatment that is holistic and considers the context in which the youth is situated. Further research is warranted to better understand the relationship between problem gambling and delinquent behaviours.     

Brief Report: The Unrealized Potential of Autonomous Vehicles for an Aging Population

Autonomous vehicles (AVs) have the potential to improve the health and well-being of older people. This exploratory study involved in-depth interviews with 43 key stakeholders across a broad range of sectors to identify the primary policy implications of AVs for aging populations. Four main issues were evident: a general lack of salience of the needs of older people in the AV discourse, the perceived dominance of the commercial drivers of AV technology, the implications of the particular characteristics of the senior segment, and a lack of available analyses to guide decision making. Threats and opportunities represented by these issues are discussed.     

Children’s Disclosure of Sexual Abuse: A Systematic Review of Qualitative Research Exploring Barriers and Facilitators

This study evaluates and synthesizes qualitative evidence addressing factors affecting a child’s decision to disclose an experience of sexual abuse. Childhood sexual abuse is a devastating crime, with long-term negative impacts. Understanding the factors that affect a child’s decision to disclose is vital. Disclosure enables access to support and protection, both therapeutically and legally. A systematic review was conducted focusing on factors affecting a child’s decision to disclose an experience of sexual abuse. Seven studies were identified, quality appraisal undertaken, and meta-ethnography used to synthesize the studies. Six new super-ordinate themes were developed: Fear of what will happen; Others’ reactions: fear of disbelief; Emotions and impact of the abuse; An opportunity to tell; Concern for self and others; and Feelings toward the abuser. Themes indicated the importance of support, structure, and opportunity to facilitate disclosure and should be utilized by agencies to develop practices that facilitate disclosures.