Development and Psychometrics Test of Home Environment Assessment Checklist for Community-Dwelling Older Adults with Dementia.

BACKGROUND: Home environment is a core domain in the care of community-dwelling older adults with dementia, but there is no suitable instrument to measure it in China. OBJECTIVE: To develop and psychometrically test the home environment assessment checklist for community-dwelling older adults with dementia. METHODS: A three-step process was performed to develop and test this instrument: 1) based on the evidence-based theory, the checklist was summarized as the main points of evidence from living environment settings among older adults with dementia, 2) the draft tool was assigned to an iterative process of evaluation by a panel of examiners consisting of experts from treatment, nursing and caring, people with dementia and their caregivers, 3) inter-rater reliability and internal consistency were calculated with a sample of 348 caregivers of the older adults with dementia. RESULTS: The HEAC consisted of 71 items in domains addressing safety, stability and familiarity, visual cues, and sensory stimulation. Psychometric evaluation showed that this tool demonstrated sound reliability and validity. Content validity was 0.969 which was established by a panel of experts (n = 10). Inter-rater reliability of two researchers was 0.978, and 0.848 for researchers and caregivers. Test-retest reliability was excellent (ICC = 0.757-0.877) in community-dwelling older adults with dementia 2 week apart. CONCLUSION: The HEAC is a new tool to help collect the reliable information on the barriers and facilitators of home environment for community-dwelling older adults with dementia and to precipitate the home modification process to improve the quality of care for people with dementia and their caregivers in daily life.

Family Caregiving for Individuals With Heart Failure: A Scientific Statement From the American Heart Association.

Many individuals living with heart failure (HF) rely on unpaid support from their partners, family members, friends, or neighbors as caregivers to help manage their chronic disease. Given the advancements in treatments and devices for patients with HF, caregiving responsibilities have expanded in recent decades to include more intensive care for increasingly precarious patients with HF-tasks that would previously have been undertaken by healthcare professionals in clinical settings. The specific tasks of caregivers of patients with HF vary widely based on the patient's symptoms and comorbidities, the relationship between patient and caregiver, and the complexity of the treatment regimen. Effects of caregiving on the caregiver and patient range from physical and psychological to financial. Therefore, it is critically important to understand the needs of caregivers to support the increasingly complex medical care they provide to patients living with HF. This scientific statement synthesizes the evidence pertaining to caregiving of adult individuals with HF in order to (1) characterize the HF caregiving role and how it changes with illness trajectory; (2) describe the financial, health, and well-being implications of caregiving in HF; (3) evaluate HF caregiving interventions to support caregiver and patient outcomes; (4) summarize existing policies and resources that support HF caregivers; and (5) identify knowledge gaps and future directions for providers, investigators, health systems, and policymakers.

Timely recognition of palliative care needs of patients with advanced chronic heart failure: a pilot study of a Dutch translation of the Needs Assessment Tool: Progressive Disease - Heart Failure (NAT:PD-HF).

BACKGROUND: The Needs Assessment Tool: Progressive Disease - Heart Failure (NAT:PD-HF) was developed to identify and triage palliative care needs in patients with chronic heart failure. A Dutch version is currently lacking. AIMS: The aim of this study was to investigate the feasibility and acceptability of a Dutch NAT:PD-HF in chronic heart failure outpatients; and to gain preliminary data regarding the effect of the NAT:PD-HF on palliative care referral, symptoms, health status, care dependency, caregiver burden and advance directives. METHODS: A mixed methods study including 23 outpatients with advanced chronic heart failure and 20 family caregivers was performed. Nurses conducted patient consultations using a Dutch translation of the NAT:PD-HF and rated acceptability. Before this visit and 4 months later, symptoms, health status, performance status, care dependency, caregiver burden and recorded advance directives were assessed. A focus group with participating nurses discussed barriers and facilitators towards palliative care needs assessment. RESULTS: Acceptability was rated as 7 (interquartile range 6-7 points) on a 10-point scale. All patients had palliative care needs. In 48% actions were taken, including two patients referred to palliative care. Symptoms, performance status, care dependency, caregiver burden and advance directives were unchanged at 4 months, while health status deteriorated in patients completing follow-up ( n=17). Barriers towards palliative care needs assessment included feeling uncomfortable to initiate discussions and concerns about the ability to address palliative care needs. CONCLUSIONS: The NAT:PD-HF identified palliative care needs in all participants, and triggered action to address these in half. However, training in palliative care communication skills as well as palliative care interventions should accompany the introduction of a palliative care needs assessment tool. NETHERLANDS NATIONAL TRIAL REGISTER (NTR): 5616. http://www.trialregister.nl/trialreg/admin/rctview.asp?TC=5616.

An assessment of quality of home-based HIV counseling and testing performed by lay counselors in a rural sub-district of KwaZulu-Natal, South Africa.

HIV counseling and testing (HCT) has been prioritized as one of the prevention strategies for HIV/AIDS, and promoted as an essential tool in scaling up and improving access to treatment, care and support especially in community settings. Home-based HCT (HBHCT) is a model that has consistently been found to be highly acceptable and has improved HCT coverage and uptake in low- and middle-income countries since 2002. It involves trained lay counselors going door-to-door offering pre-test counseling and providing HCT services to consenting eligible household members. Currently, there are few studies reporting on the quality of HBHCT services offered by lay counselors especially in Sub-Saharan Africa, including South Africa. This is a quantitative descriptive sub-study of a community randomized trial (Good Start HBHCT trial) which describes the quality of HBHCT provided by lay counselors. Quality of HBHCT was measured as scores comparing observed practice to prescribed protocols using direct observation. Data were collected through periodic observations of HCT sessions and exit interviews with clients. Counselor quality scores for pre-test counseling and post-test counseling sessions were created to determine the level of quality. For the client exit interviews a continuous score was created to assess how satisfied the clients were with the counseling session. A total of 196 (3%) observational assessments and 406 (6%) client exit interviews were completed. Overall, median scores for quality of counseling and testing were high for both HIV-negative and HIV-positive clients. For exit interviews all 406 (100%) clients had overall satisfaction with the counseling and testing services they received, however 11% were concerned about the counselor keeping their discussion confidential. Of all 406 clients, 393 (96.8%) intended to recommend the service to other people. In ensuring good quality HCT services, ongoing quality assessments are important to monitor quality of HCT after training.

Formal and informal support of family caregivers managing medications for patients who receive end-of-life care at home: a cross-sectional survey of caregivers.

BACKGROUND: Managing medications is a complex responsibility of family caregivers caring for end-of-life patients. This study characterizes caregivers with and without formal/informal support managing medications for patients who receive end-of-life care at home. AIM: To explore factors related to caregivers' support with managing medications for end-of-life home hospice patients. DESIGN: A convenience-sampled, cross-sectional telephone survey. SETTING/PARTICIPANTS: Computer-assisted telephone interviews were administered to 120 caregivers managing medications, who were referred by five Chicago-based home hospice services. We measured caregivers' additional formal (paid) and informal (unpaid) support with managing medications, and caregiver/patient socio-demographic, relational, and health characteristics. RESULTS: While 47 (39%) had no additional support with managing medications, 27 (22.5%) had formal support, 37 (31%) informal, and 9 (7.5%) both. Seven caregivers (19%) with formal and 13 (31%) with informal support reported disagreements concerning treatment plans. Caregivers lacking formal support tended to be racial/ethnic minorities, live with the patient in their home, or report greater emotional burden. Caregivers with formal support tended to report higher education/income, lower mutuality, or care for a patient with over 6 months' hospice enrollment. Caregivers lacking informal support tended to be spousal caregivers, live with the patient, or have experience caring for another dying person. CONCLUSION: Our study suggests that high proportions of caregivers may not have support managing medications for patients receiving hospice care at home. More research should examine whether the observed variations in obtaining support indicate disparities or unmet needs among caregivers. Disagreement about treatment with formal/informal support also warrants further investigation.

Reliability and validity of the Home Care STAT (Safety Task Assessment Tool).

Home care workers are a priority population for ergonomic assessment and intervention, but research on caregivers' exposures to hazards is limited. The current project evaluated the reliability and validity of an ergonomic self-assessment tool called Home Care STAT (Safety Task Assessment Tool). Participants (N = 23) completed a background survey followed by 10-14 days of self-monitoring with the STAT. Results showed that the most frequent task was house cleaning, and that participants regularly performed dangerous manual client moving and transferring tasks. Researcher in-home observations of 14 workers (duration ≤ 2 h) demonstrated that workers' self-assessments were moderately reliable. Correlational and multi-level analyses of daily self-assessment data revealed that several task exposures were significantly related to daily fatigue and/or pain. Other associations have implications for Total Worker Health™; for example, daily stress was positively associated with both pain and consumption of high calorie snacks. Findings support the STAT as a reliable and potentially valid tool for measuring home care workers' exposures to physically demanding tasks.

Effects and costs of home-based training with telemonitoring guidance in low to moderate risk patients entering cardiac rehabilitation: The FIT@Home study.

BACKGROUND: Physical training has beneficial effects on exercise capacity, quality of life and mortality in patients after a cardiac event or intervention and is therefore a core component of cardiac rehabilitation. However, cardiac rehabilitation uptake is low and effects tend to decrease after the initial rehabilitation period. Home-based training has the potential to increase cardiac rehabilitation uptake, and was shown to be safe and effective in improving short-term exercise capacity. Long-term effects on physical fitness and activity, however, are disappointing. Therefore, we propose a novel strategy using telemonitoring guidance based on objective training data acquired during exercise at home. In this way, we aim to improve self-management skills like self-efficacy and action planning for independent exercise and, consequently, improve long-term effectiveness with respect to physical fitness and physical activity. In addition, we aim to compare costs of this strategy with centre-based cardiac rehabilitation. METHODS/DESIGN: This randomized controlled trial compares a 12-week telemonitoring guided home-based training program with a regular, 12-week centre-based training program of equal duration and training intensity in low to moderate risk patients entering cardiac rehabilitation after an acute coronary syndrome or cardiac intervention. The home-based group receives three supervised training sessions before they commence training with a heart rate monitor in their home environment. Participants are instructed to train at 70-85% of their maximal heart rate for 45-60 minutes, twice a week. Patients receive individual coaching by telephone once a week, based on measured heart rate data that are shared through the internet. Primary endpoints are physical fitness and physical activity, assessed at baseline, after 12 weeks and after one year. Physical fitness is expressed as peak oxygen uptake, assessed by symptom limited exercise testing with gas exchange analysis; physical activity is expressed as physical activity energy expenditure, assessed by tri-axial accelerometry and heart rate measurements. Secondary endpoints are training adherence, quality of life, patient satisfaction and cost-effectiveness. DISCUSSION: This study will increase insight in long-term effectiveness and costs of home-based cardiac rehabilitation with telemonitoring guidance. This strategy is in line with the trend to shift non-complex healthcare services towards patients' home environments. TRIAL REGISTRATION: Dutch Trial Register: NTR3780. Clinicaltrials.gov register: NCT01732419.

Examining satisfaction with live-in foreign home care in Israel from the perspectives of care recipients, their family members, and their foreign home care workers.

OBJECTIVES: This pilot study evaluates satisfaction with foreign home care arrangement from the perspectives of older adults, their family members, and their foreign home care workers. METHODS: A matched cross-sectional sample of 148 family members and foreign home care workers and 90 older care recipients completed a satisfaction survey in the years 2007-2008. RESULTS: Foreign home care workers' satisfaction was directly associated with family members' and care recipients' satisfaction. In addition, the well-being of older care recipients and foreign home care workers was directly associated with their satisfaction with this arrangement. Finally, there was an inverse association between care recipients' cognitive functioning and family members' satisfaction. CONCLUSIONS: This study demonstrates the complex associations between the various stakeholders involved in this caregiving arrangement. It is possible that better working conditions would result in improved satisfaction with services of all parties involved.

[Preventing pain provoked by home nursing care]. / Prévenir la douleur provoquée par les soins à domicile.

If the prevention of pain induced by home nursing care is taking shape through continuing professional education and support provided to the networks, various factors are curbing its widespread development. Developing interactions between healthcare professionals to prevent and alleviate this pain remains an objective to promote.

Nutrition in care homes and home care: recommendations - a summary based on the report approved by the Council of Europe.

Undernutrition in home care and care home settings has been acknowledged as a situation with various causes and significant consequences on both an individual and social level. A review article exposing this problem has been recently published. Consequently, scientific experts and other stakeholders were involved in formulating recommendations to tackle undernutrition and sensitize political authorities. The forum held in Brussels and its proceedings were considered as a baseline to interview stakeholders involved in care homes and home care in order to propose solutions on different levels. A full report including guidelines was sent and accepted by the Council of Europe, and can be used as a basis for implementing strategies on a national and international level. A multidisciplinary approach is important to successfully tackle malnutrition on multiple levels: the patients, the health care workers (medical and non-medical), the public, policy makers and society stakeholders. Awareness for patients and caregivers is important; this can be obtained by information and appropriate training. Care home management and kitchen staff activities can be modified in order to promote nutrition. Policy makers should create legal frameworks to confront malnutrition as being a public health concern. Undernutrition in home care and care home settings is a considerable problem and confrontation involves a multidisciplinary approach.

Quality of informal care is multidimensional.

PURPOSE: To demonstrate that assessing quality of informal care involves more than merely determining whether care recipient needs for assistance with activities of daily living (ADLs) are routinely satisfied. We investigated the extent to which potentially harmful behavior (PHB), adequate care, and exemplary care (EC) are empirically distinct dimensions of quality of care. DESIGN: 237 care recipients completed the quality of care measures, and their caregivers completed psychosocial measures of their own depression, life events, cognitive status, and perceptions of pre-illness relationship quality. RESULTS: Although PHB was moderately related to EC, adequate care was not associated with PHB and was only slightly related to EC. Psychosocial variables were not related to adequate care but were differentially associated with PHB and EC, providing additional evidence for the distinction between these measures of quality of care. CONCLUSIONS: ADL assistance can be adequate in the presence of PHB and/or the absence of EC. Declines in EC may signal increases in PHB, independent of adequacy of care. These findings produce a brief, portable, and more comprehensive instrument for assessing quality of informal care.

Engagement in paraprofessional home visitation: families' reasons for enrollment and program response to identified reasons.

Home visitation programs have exhibited modest impact in promoting maternal and child health outcomes; therefore, formative research is necessary to examine whether home visiting program models or actual implementation need to be modified. In particular, client engagement and retention have been identified as areas in which program implementation can be enhanced. This study assessed home visiting clients' reasons for entering home visiting programs and their perception of programs' response to these identified needs. We asked newly enrolled home visiting clients (n = 123) to identify reasons for entering their home visiting program, including their first and second most important reasons. The most frequently cited reasons for enrolling were wanting information about job training, completing one's education, keeping in good health during pregnancy, and learning about infant growth and development. Home visiting programs' response to clients' identified needs varied. Needs more closely related to home visiting program goals of providing parenting education and promoting prenatal health were most often met, whereas needs less closely related to program goals (e.g., life course needs such as information about job training or education) were less often met. Our findings suggest that home visiting programs in urban contexts should consider modifying their program protocols to better respond to employment- and education-related issues facing their clients.

Assessment of a treatment guideline to improve home management of malaria in children in rural south-west Nigeria.

BACKGROUND: Many Nigerian children with malaria are treated at home. Treatments are mostly incorrect, due to caregivers' poor knowledge of appropriate and correct dose of drugs. A comparative study was carried out in two rural health districts in southwest Nigeria to determine the effectiveness of a guideline targeted at caregivers, in the treatment of febrile children using chloroquine. METHODS: Baseline and post intervention knowledge, attitude and practice household surveys were conducted. The intervention strategy consisted of training a core group of mothers ("mother trainers") in selected communities on the correct treatment of malaria and distributing a newly developed treatment guideline to each household. "Mother trainers" disseminated the educational messages about malaria and the use of the guideline to their communities. RESULTS: Knowledge of cause, prevention and treatment of malaria increased with the one-year intervention. Many, (70.4%) of the respondents stated that they used the guideline each time a child was treated for malaria. There was a significant increase in the correct use of chloroquine from 2.6% at baseline to 52.3% after intervention among those who treated children at home in the intervention arm compared with 4.2% to 12.7% in the control arm. The correctness of use was significantly associated with use of the guideline. The timeliness of commencing treatment was significantly earlier in those who treated febrile children at home using chloroquine than those who took their children to the chemist or health facility (p < 0.005). Mothers considered the guideline to be explicit and useful. Mother trainers were also considered to be effective and acceptable. CONCLUSION: The use of the guideline with adequate training significantly improved correctness of malaria treatment with chloroquine at home. Adoption of this mode of intervention is recommended to improve compliance with drug use at home. The applicability for deploying artemisinin-based combination therapy at the community level needs to be investigated.

Influence of autonomy and type of home assistance on the prevention of peritonitis in assisted automated peritoneal dialysis patients. An analysis of data from the French Language Peritoneal Dialysis Registry.

BACKGROUND: In France, 48% of home-based peritoneal dialysis (PD) patients require assistance to perform their exchange and manage their treatment. A total of 7% are aided by their family, and 41% by a private nurse. Of all the continuous ambulatory peritoneal dialysis (CAPD) patients, 61.7%, and among automated peritoneal dialysis (APD) patients 23%, are assisted at home for their bag exchanges and connections. Assisted APD patients (AAPD) are more comorbid and elderly so that a home helper is not always available: this explains why most helpers at home are private visiting nurses paid by the National Social Security. In addition to the home helper (nurse or family), 58% of centres make regular additional home visits to check the respect of procedures previously taught during the initial training of the nurse or the family helper. The aim of this study was to evaluate whether the type of home assistance received by dependent patients had an influence on peritonitis rates, and if home visits done by nurses of training centres may improve results. METHODS: Peritonitis rates and the probability of being peritonitis free were analysed for 1624 new APD patients recorded in the French PD Registry (RDPLF) between 2000 and 2004, and followed-up until early 2005. RESULTS: Nurse-assisted APD patients had a peritonitis rate of one episode every 36 months, and family-assisted patients one episode every 45 months; using Poisson analysis this trend was not significant (P=0.11). However, the probability of being peritonitis free was significantly higher for family-assisted (69.8% at 2 year) compared with home nurse-aided persons (54.4%) after adjustment for age, diabetes and the Charlson comorbidity index. This difference disappeared when nurses from the training centre regularly visited PD patients at their home in the presence of their helper, whichever type of assistance they received. In addition, when the nurses from the training centres visited private nurse-assisted patients, the probability of being peritonitis free was significantly improved in comparison with those persons who did not receive home visits, from 33.9% to 50.8% at 3 years (P=0.028). CONCLUSIONS: APD patients assisted at home by a private nurse have a higher risk of developing peritonitis than family-assisted patients, unless additional regular home visits are organized by the original training centre. Therefore, we recommend that home visits be regularly made for dependent PD patients to optimize the quality of care provided by the helper.

Lessons learned from a Parkinson's disease caregiver intervention pilot study.

This article discusses the pilot test of a psychoeducational intervention designed to improve the care skills, self-health skills, and resource-acquisition skills of caregivers of adults with Parkinson's disease. It describes the intervention and discusses specific feasibility issues explored in the pilot test as well as the modifications made in an ongoing randomized trial as a result of the pilot test. Recommendations for researchers who conduct interventions with older persons in community-based settings are included.