Disaster preparedness for vulnerable persons receiving in-home, long-term care in South Carolina

PURPOSE: The purpose of this study was to examine how agencies in South Carolina that provide in-home health care and personal care services help older and/or disabled clients to prepare for disasters. The study also examines how agencies safeguard clients' records, train staff, and how they could improve their preparedness. METHODS: The relevant research and practice literature was reviewed. Nine public officials responsible for preparedness for in-home health care and personal care services in South Carolina were interviewed. A telephone survey instrument was developed that was based on these interviews and the literature review. Administrators from 16 agencies that provide in-home personal care to 2,147 clients, and five agencies that provide in-home health care to 2,180 clients, were interviewed. Grounded theory analysis identified major themes in the resulting qualitative data; thematic analysis organized the content. RESULTS: Federal regulations require preparedness for agencies providing in-home health care ("home health"). No analogous regulations were found for in-home personal care. The degree of preparedness varied substantially among personal care agencies. Most personal care agencies were categorized as "less" prepared or "moderately" prepared. The findings for agencies in both categories generally suggest lack of preparedness in: (1) identifying clients at high risk and assisting them in planning; (2) providing written materials and/or recommendations; (3) protecting records; (4) educating staff and clients; and (5) coordinating disaster planning and response across agencies. Home health agencies were better prepared than were personal care agencies. However, some home health administrators commented that they were unsure how well their plans would work during a disaster, given a lack of training. The majority of home health agency administrators spoke of a need for better coordination and/or more preparedness training. CONCLUSIONS: Agencies providing personal care and home health services would benefit from developing stronger linkages with their local preparedness systems. The findings support incorporating disaster planning in the certification requirements for home health agencies, and developing additional educational resources for administrators and staff of personal care agencies and their clients.     

Clients' and workers' perceptions on clients' functional ability and need for help: home care in municipalities

The aim of the study was to compare clients' and named home care (HC) workers' perceptions of clients' functional ability (FA) and need for help and to analyse which client- and municipality-related factors are associated with perceptions of client's FA. The total of 686 Finnish HC clients was interviewed in 2001. Further, the questionnaire was sent to 686 HC workers. FA was assessed by activities of daily living (ADL), which included both basic/physical (PADL) and instrumental (IADL) activities. The association between client's FA and municipality-related variables was analysed by using hierarchical logistic regression models. The findings indicated that clients' and HC-workers' perceptions about what the clients were able to do were similar in the PADL functions, but perceptions differed when it comes to the IADL functions for mobility and in climbing stairs. A smaller proportion of clients compared with HC workers assessed themselves to be in need of help in all ADL functions. Use of home help and bathing services increased the probability of belonging to the 'poor' FA class while living alone and small size of municipality decreased the probability. The study indicates that although clients and workers assessed client's FA fairly similarly, there were major differences in perceptions concerning clients' needs for help in ADL functions. Clients' and workers' shared view of need for help forms a basis for high-quality care. Therefore, the perception of both the clients and workers must be taken into account when planning care and services. There was also variation in clients' FA between municipalities, although only the size of municipality had some association with the variation. The probability that clients with a lower FA are cared for in HC is higher if the clients live in large- rather than small-sized municipalities. This may reflect a better mix of services and resources in large-sized municipalities.     

Client expectations and satisfaction of quality in home care services. A consumer perspective

This study examines clients' expectations of quality in home care services and their perceived satisfaction with services among a random sample of 76 home care recipients in Vancouver, Canada. The researchers conducted face-to-face interviews that applied Multiattribute Utility Technology, a procedure that organizes several quality attributes of "ideal" home care into a tree structure to compare their relative importance and ranking from the clients' perspective. Participants also were asked to state their satisfaction or dissatisfaction with the services received in these domains. Among the five main quality attributes identified, the subjects ranked suitability of the home helper and its subset, personal competence, as the most important indicators of quality, followed by continuity in service. In addition, clients tended to have a high level of satisfaction with regard to the attributes of overall home care services. The highest level of satisfaction was reported for elements of personal dispositions of home care staff. The lowest level of satisfaction involved the time/availability components of the service. Finally, comparisons between client expectations and satisfaction of received home care services showed the highest discrepancy for the attributes of influence and time/availability and the greatest congruence for personal attributes of the staff. The results are discussed in terms of their implications for the delivery of home care services.     

Consumer and carer participation in mental health care: the carer's perspective: part 2 - barriers to effective and genuine participation

Family members and significant others provide significant proportions of unpaid care for people experiencing a mental illness. Although the carer role is pivotal to contemporary mental health service delivery, the role of carers and the issues they face have received only scant attention in the literature. This paper presents the second part of the findings of an exploratory, qualitative inquiry, which sought greater understanding of carers' experiences of, and attitudes to opportunities for participation in care and treatment at an individual or systemic level, with particular emphasis on the role of psychiatric nurses in encouraging or discouraging participation. This paper explores the theme of systemic barriers to participation. These findings demonstrate the variable experiences of carers in their opportunities to participate and the important role nurses can assume in supporting carers' increased participation in the mental health care for their relative or significant other.     

Implementing assertive community care for patients with schizophrenia. A case study of co-operation and collaboration between mental health care and social services

The aim of this study was to describe the personal experiences of collaboration and co-operation between staff from the community mental health and social services programmes in their daily work with schizophrenic patients. An additional aim was to generate the first step in a theory of how staff in the field of health care and social services manages to integrate their efforts on an individual and organizational level. The study group consisted of five members of a multidisciplinary team who had been working for 2 years with assertive outreach intensive clinical case management. Verbatim-transcribed thematic interviews were analysed according to the comparative method for grounded theory. The analysis was focused on quality of interpersonal interaction between practitioners, representing different professions in community-based mental health care, as well as the professional relationship to the patients/clients and their relatives. In the light of an individual and organizational perspective, different typologies of interpersonal interactions appeared. Three main variables were identified: collaborative relationship, co-operative partnership and professional-amateurism. Our findings on these qualitative differences in interpersonal relations should be taken into account in the continuing reorganization of the community health care services. This knowledge can also help in overcoming barriers between patients, professionals and organizations in the mental health services.     

Barriers and enablers to changing organizational culture in nursing homes

PURPOSE: To discuss the barriers and enablers of changing organizational culture in 3 nursing homes undergoing a culture change initiative, and suggest actions for program enhancement. METHODS: Interview data with staff (n = 64) and families (n = 14) from 3 culture-change facilities in a larger mixed-methods pilot study were used to identify barriers and enablers. FINDINGS: The 3 sites ranged from 120 to 139 beds and did not differ in staff characteristics. Barriers included exclusion of nurses from culture-change activities, perceived corporate emphasis on regulatory compliance and the "bottom line," and high turnover of administrators and caregivers. Enablers included a critical mass of "change champions," shared values and goals, resident/family participation, and empowerment at the facility level. RECOMMENDATIONS: Involve all levels of staff, residents, and community in culture-change activities. Align incentives and rewards with the new values. Empower individual homes to make decisions at the facility level. Work with corporate partners to enable rapid translation and implementation of recommendations based on the findings.     

To your health: implementation of a wellness program for treatment staff and persons with mental illness

Persons with mental illness often have poor access to both health promotion and primary care services. Consequently, they are at greater risk for earlier mortality, and comorbid health problems that ultimately impact their community rehabilitation. The "To Your Health" program is a health promotion program, based on the states of change model that was implemented as part of a clubhouse rehabilitation program. The program used personal wellness profiles, health assessments, and personal goal setting to assess the relative wellness of clients and staff in order to increase their awareness of health-promoting behaviors. Additionally opportunities were provided to engage individuals in making changes through participation in activities that provided opportunities to try out new behaviors and to set goals that integrated changes into their lives. The initial findings are reported along with the rationale for the involvement of clients and staff, and the role of health promotion in community rehabilitation of persons with mental illness.     

CONSUMER AND CARER PARTICIPATION IN MENTAL HEALTH CARE: THE CARER'S PERSPECTIVE: PART 2—BARRIERS TO EFFECTIVE AND GENUINE PARTICIPATION

Family members and significant others provide significant proportions of unpaid care for people experiencing a mental illness. Although the carer role is pivotal to contemporary mental health service delivery, the role of carers and the issues they face have received only scant attention in the literature. This paper presents the second part of the findings of an exploratory, qualitative inquiry, which sought greater understanding of carers' experiences of, and attitudes to opportunities for participation in care and treatment at an individual or systemic level, with particular emphasis on the role of psychiatric nurses in encouraging or discouraging participation. This paper explores the theme of systemic barriers to participation. These findings demonstrate the variable experiences of carers in their opportunities to participate and the important role nurses can assume in supporting carers' increased participation in the mental health care for their relative or significant other.     

Barriers to community participation: Teens and young adults with spina bifida

This study identified the baseline participation rates for 101 teens and young adults ages 10-32 years old with a diagnosis of spina or lipomenigocele bifida in various domains: school, employment, community activities, physical activity and peer social relationships. The goal of the study was also to identify barriers to community participation. Our findings demonstrate that overall participation is low in several domains. Community participation is low with only 30% partaking in an organized community activity at least once a week. Multiple individual, family, and environmental barriers were identified by participants and their family. The most frequent barriers identified were low motivation (38%), lack of information (25%) and time constraints (21%). Barriers need to be addressed on an individualized basis as well as addressing the community as a whole. Future plans are to intervene based on the barriers and reassess participation at 6 months and a year with the goal of increased long term participation, employment, quality of life and social relationships.     

Case management from urban and suburban perspectives

The purpose of this research, commissioned by an Area Agency on Aging in Pennsylvania, is to identify the factors that impact on the process of case management in urban and suburban settings. Random samples of clients receiving the same service in an urban and a suburban area were compared as well as direct observations made of case managers in these same locations. The results indicate that clients in the urban environment face individual and structural barriers that would increase the difficulty for case managers to access services on the clients' behalf. Workers in the two settings also face different environmental circumstances that impact on how they carry out the case management process.     

Helpfulness of mental health day care: client and staff views

Seventeen clients of a mental health day service were interviewed regarding their treatment experiences Content analysis of this information was undertaken, and the clients then rank-ordered the reported aspects of treatment from most to least helpful Staff undertook a similar procedure to enable clients' views to be placed in context Both clients and staff reported counselling as the most helpful aspect of treatment Clients and staff disagreed as to the relative helpfulness of medical and group aspects of treatment Clients reported medical treatment as the second most helpful aspect, and staff reported groups and the planned approach to care second Social contact with other clients was reported to be just as helpful as organized group therapy by clients Clients identified that just having somewhere to go to meet people was very helpful Communication difficulties between staff and clients were evident with regard to the planned approach to care, discharge planning, and group activities The ability of clients to evaluate their treatment experiences differentially is highlighted     

Using the ICF to Identify Contextual Factors That Influence Participation of Persons With Deafblindness

ObjectiveTo identify and describe the contextual factors that influence the participation of people with deafblindness in India.DesignQualitative study, using directed content analysis approach and the International Classification of Functioning, Disability and Health (ICF) as a framework to analyze the data.SettingCommunity and social participation settings.ParticipantsCommunity-dwelling individuals with deafblindness (N=16). Age ranges from 18-45 years.InterventionsNot applicable.Main Outcome MeasuresPersonal and environmental factors that influence the participation of individuals with deafblindness using the ICF framework.ResultsResults indicate that the age of onset and nature of impairment (deafblindness) and willingness to explain the condition (functional consequences of deafblindness) emerged as important personal factors. Access to resources such as assistive technology, social support, and deafblind-specific services were found to be enablers of participation. Lack of services, systems, and policies specific to deafblindness along with negative societal attitude toward disability were highly perceived environmental barriers that influence participation of people with deafblindness in India.ConclusionsProfessionals must acknowledge aspects of the environment in conducting assessments and delivering interventions and understand the dynamic interactions between environment of the individual and his/her concurrent vision and hearing impairments. Approaches to enable participation require rehabilitation professionals to work with those with deafblindness to advocate for removal of environmental barriers and ensure provision of appropriate resources from the government to facilitate their participation. Social policy and government must ensure emphasis on awareness about deafblindness, access to deafblind-specific services, positive societal attitude, and opportunities for full participation for people with deafblindness in society.     

Predictors of disrupted social participation in myotonic dystrophy type 1

Gagnon C, Mathieu J, Jean S, Laberge L, Perron M, Veillette S, Richer L, Noreau L. Predictors of disrupted social participation in myotonic dystrophy type 1.

Objective

To identify personal and environmental predictors of the most disrupted participation domains in people with myotonic dystrophy type 1 (DM1).

Design

Cross-sectional study.

Setting

Outpatient neuromuscular clinic.

Participants

Adults (n=200; 121 women), age 18 years or older (mean age, 47y), with a confirmed diagnosis of DM1 were selected from the registry of a neuromuscular clinic (N=416). Fifty-two participants had the mild phenotype and 148 the adult phenotype.

Interventions

Not applicable.

Main Outcome Measures

Social participation in mobility, housing, employment, and recreation was assessed with the Life Habits Measure. Disrupted participation was based on whether help was needed in performing most life habits because of incapacities or environmental barriers. Environmental factors were assessed by using the Measure of the Quality of the Environment. Personal factors were assessed with standardized instruments including the Berg Balance Scale, the Krupp Fatigue Severity Scale, and manual muscle testing.

Results

A large proportion of participants (45%-61%) reported disrupted participation in all 4 domains. Lower-extremity strength (odd ratios [OR], 15.0-5.5; P<.050) and higher fatigue (OR, 6.0-2.6; P<.05) were present in participants with disrupted participation. With regard to environmental factors, family support (OR, 3.6-2.5; P<.05) and public services (OR, 2.8-2.2; P<.05) were perceived as barriers for participants with disrupted participation in most domains.

Conclusions

This study identified personal and environmental factors that may influence the trajectory toward disrupted participation in individuals with DM1. Fatigue, strength, family support, and public services were found to be independent predictors of disrupted participation.     

Exercise class participation among residents in low-level residential aged care could be enhanced: a qualitative study

QUESTION: What do residents in low-level residential care perceive as motivators and barriers to participating in exercise classes at the facility? DESIGN: Qualitative study using focus groups. PARTICIPANTS: Residents, nursing staff and allied health staff of a low-level residential care facility. RESULTS: Key motivators for residents to attend the exercise classes included personal benefits, such as improved health and opportunities to socialise, and the support and encouragement that they received from family members and health professionals. The barriers to participating in the exercise classes included: health issues like pain, incontinence, and hearing impairments; external constraints such as the location of the classes and the early morning time; and internal constraints associated with a lack of knowledge about the classes and the benefits of exercising. While the key themes that arose from this study are consistent with findings from studies of community-dwelling adults, several of the barrier subthemes were unique. CONCLUSION: Recommendations from our findings to enhance exercise class participation include careful consideration of: class scheduling; class location; social aspects associated with exercise classes; support of social networks and health providers; health issues perceived to limit exercise; and marketing of classes.     

Life situation of aged home-nursing clients

We describe the life situation of elderly Finnish home-nursing clients (N = 50) on the basis of their own experiences and opinions of need-satisfaction. The purpose of the study, which was carried out as part of a nursing development project in the form of action research, was to gain a deeper understanding of the satisfaction of human needs and problems of need-satisfaction in aged people and on this basis to develop forms of nursing that support self-care. The data were collected using a semistructured questionnaire, which was designed primarily on the basis of the need theories of Yura and Walsh and Orem. The specific areas of inquiry included the clients' experiences of need-satisfaction in the promotion of physical health, emotional life, relations of communality, personal growth and development, and spiritual life. Overall the aged clients were relatively satisfied. However, in certain areas there were also unmet needs, notably in getting adequate nutrition, rest, and sleep, as well as in secretory activity. In addition, it seemed that loneliness caused considerable anxiety to the elderly home-nursing clients.