Canada's Compassionate Care Benefit:Is it an adequate public health response to addressing the issue of caregiver burden in end-of-life care?

Background: An increasingly significant public health issue in Canada, and elsewhere throughout the developed world, pertains to the provision of adequate palliative/end-of-life (P/EOL) care. Informal caregivers who take on the responsibility of providing P/EOL care often experience negative physical, mental, emotional, social and economic consequences. In this article, we specifically examine how Canada's Compassionate Care Benefit (CCB) - a contributory benefits social program aimed at informal P/EOL caregivers - operates as a public health response in sustaining informal caregivers providing P/EOL care, and whether or not it adequately addresses known aspects of caregiver burden that are addressed within the population health promotion (PHP) model. Methods. As part of a national evaluation of Canada's Compassionate Care Benefit, 57 telephone interviews were conducted with Canadian informal P/EOL caregivers in 5 different provinces, pertaining to the strengths and weaknesses of the CCB and the general caregiving experience. Interview data was coded with Nvivo software and emerging themes were identified by the research team, with such findings published elsewhere. The purpose of the present analysis was identified after comparing the findings to the literature specific to caregiver burden and public health, after which data was analyzed using the PHP model as a guiding framework. Results: Informal caregivers spoke to several of the determinants of health outlined in the PHP model that are implicated in their burden experience: gender, income and social status, working conditions, health and social services, social support network, and personal health practises and coping strategies. They recognized the need for improving the CCB to better address these determinants. Conclusions: This study, from the perspective of family caregivers, demonstrates that the CCB is not living up to its full potential in sustaining informal P/EOL caregivers. Effort is required to transform the CCB so that it may fulfill the potential it holds for serving as one public health response to caregiver burden that forms part of a healthy public policy that addresses the determinants of this burden. © 2011 Williams et al; licensee BioMed Central Ltd.

Social determinants of older adults' awareness of community support services in Hamilton, Ontario

Community support services (CSSs) have been developed in Canada and other Western nations to enable persons coping with health or social issues to continue to live in the community. This study addresses the extent to which awareness of CSSs is structured by the social determinants of health. In a telephone interview conducted in February-March 2006, 1152 community-dwelling older adults (response rate 12.4%) from Hamilton, Ontario, Canada were made to read a series of four vignettes and were asked whether they were able to identify a CSS they may turn to in that situation. Across the four vignettes, 40% of participants did name a CSS as a possible source of assistance. Logistic regression was used to determine factors related to awareness of CSSs. Respondents most likely to have awareness of CSS include the middle-aged and higher-income groups. Being knowledgeable about where to look for information about CSSs, having social support and being a member of a club or voluntary organisations are also significant predictors of awareness of CSSs. Study results suggest that efforts be made to improve the level of awareness and access to CSSs among older adults by targeting their social networks as well as their health and social care providers. © 2011 Blackwell Publishing Ltd.

Patterns of use of natural health products by Ontario seniors

A random dialing telephone survey of 1,071 60+ year-olds in 4 Ontario communities identified 553 (52%) users of natural health products. Mean age was 72 yrs (min-max:60-95); 76% were female. The most frequently reported natural health products were: echinacea (27%), glucosamine (26%), garlic (20%), ginkgo biloba (10%), St. John's wort (5%), ginseng (5%), flax seed oil (3%), evening primrose oil (2%), devil's claw (2%), saw palmetto (2%). Natural source vitamin use was reported by 24% of users, and 6% reporting using herbal teas. 51% of users used 2 or more herbal products and 8% used 5 or more products. 19% of herbal users also used a conventional prescription drug to manage the same health problem as the herbal product. The reported range of monthly expenditures for these products varied from a few cents (grew their own) to $288 (CAN). Thirty-five percent of users did not know the price of at least one of their natural products. Of the 75% of respondents willing to disclose their annual household income ($CAN), 20 had an income of $46,000. The widespread use and potential for significant expenditure of limited resources would suggest that more study is required into the efficacy, safety and value of these products.

Compliance with recommendations in a geriatric outreach assessment service

Objectives: to measure the extent to which the recommendations of a geriatric outreach assessment service were being followed, and to determine what patient-related factors were associated with compliance with assessment recommendations. Methods: eighty-one eligible patients or caregivers who had an assessment in a geriatric outreach service participated in a telephone interview. The interview focused on the use of health services and compliance with assessment recomendations. Patient-related variables obtained from charts included demographics, caregiver support and stability, health status and assessment recommendations. Results: overall compliance with recommendations from the geriatric outreach assessment service was 65%. Patients were less likely comply fully with recommendations if they had a high number of recommendations [odds ratio (OR) = 0.23; 95% confidence interval (CI) = 0.12-0.46; P = 0.0001], inadequate caregiver support (OR) = 0.212; 95% CI = 0.04 to 1.02; P = 0.0523), or the ability to transfer themselves independently (OR = 0.12; 95% CI = 0.02-0.63; P = 0.0124). They were more likely to have full compliance if they had normal vision (OR = 6.67; 95% CI = 1.22- 36.46; P = 0.0284). Conclusion: it is important to focus on key issues when developing service recommendations and on the role of the informal caregiver in facilitating compliance with them. Good communication between the patient or caregiver and the family physician and geriatric services can help to identify strategies which might improve acceptance of recommendations.

Would older adults turn to community support services for help to maintain their independence?

The purpose of this article is to determine whether middle-aged and older adults would identify community support services (CSSs) as a source of assistance for difficulties with the instrumental activities of daily living (IADLs). Furthermore, we determine factors related to the identification of home health and CSSs. Telephone interviews were conducted with 768 adults aged 50 and older. Respondents were presented with a vignette describing a situation where loss of independence is threatened. They were asked what they would do in that situation. Although less than 20% mentioned CSSs, nearly 50% mentioned either a home health or CSS. Findings suggest those less likely to mention a home health or CSS include men, older adults, and the foreign born. In addition, those with less education, functional health limitations, no social support, and a lack of knowledge of where to find information about CSSs mentioned home health or CSSs less often. © The Author(s) 2010.

It's all about relationships:A qualitative study of health researchers' perspectives of conducting interdisciplinary health research

Background. Interdisciplinary research has been promoted as an optimal research paradigm in the health sciences, yet little is known about how researchers experience interdisciplinarity in practice. This study sought to determine how interdisciplinary research was conceptualized and operationalized from the researcher's perspective and to better understand how best to facilitate interdisciplinary research success. Methods. Key informant interviews were conducted with health researchers with expertise or experience in conducting interdisciplinary research. Interviews were completed either in person or over the telephone using a semi-structured interview guide. Data collection occurred simultaneously with data analysis so that emerging themes could be explored in subsequent interviews. A content analysis approach was used. Results. Nineteen researchers took part in this study. Interdisciplinary research was conceptualized disparately between participants, and there was modest attention towards operationalization of interdisciplinary research. There was one overriding theme, "It's all about relationships", that emerged from the data. Within this theme, there were four related subthemes: 1) Involvement in interdisciplinary research; 2) Why do I do interdisciplinary research?; 3) Managing and fostering interdisciplinary relationships; and 4) The prickly side to interdisciplinary research. Together, these themes suggest that the choice to conduct interdisciplinary research, though often driven by the research question, is highly influenced by interpersonal and relationship-related factors. In addition, researchers preferred to engage in interdisciplinary research with those that they had already established relationships and where their role in the research process was clearly articulated. A focus on relationship building was seen as a strong facilitator of interdisciplinary success. Conclusion. Many health researchers experienced mixed reactions towards their involvement in interdisciplinary research. A well thought-out rationale for interdisciplinary research, and strategies to utilize the contribution of each researcher involved were seen as facilitators towards maximizing the benefits that could be derived from interdisciplinary research. © 2008 Nair et al; licensee BioMed Central Ltd.

Older adults awareness of community health and support services for dementia care

The article examines where older adults seek help in caring for a parent with dementia and the factors associated with their identification of community health and support services as sources of assistance. The authors conducted telephone interviews, using random digit dialing, of 1,152 adults aged 50 and over in the city of Hamilton. Respondents received a vignette that raised issues related to parental dementia. In identifying support sources, over 37 per cent of respondents identified their physician, 33 per cent identified informal support such as family and neighbors, and 31 per cent identified home health services. Only 18 per cent identified community support services. Female participants having higher levels of education were more likely to identify their physician as a source of support. Knowing where to find information about community support services was associated with an increased likelihood of mentioning physicians and home health services as sources of assistance. © 2009 Copyright Canadian Association on Gerontology.

The use of natural health products (NHP) by Ontario seniors

A random dialing telephone survey in 4 Ontario communities obtained data on the use of natural health products (NHP) from 1,071 persons 60 years and older. 553 (52%) respondents were users of NHP. Prevalence of use was similar for females (53%) and males (48%). In this population modal users were of European descent, high school graduates and employed at least part-time. Half the users received recommendations about NHP from friends or relatives; another 22% learned about NHP through self-experimentation. Most users (81 %) decided by themselves whether they would buy an NHP rather than rely on input from another source (herbalist, physician, store owner/employee). 38% of NHP users had not informed their physician that they were using an NHP. When users had discussed NHP with their physician, less than 5% of physicians responded negatively. Some users felt natural health products were safer (15%) and less expensive (4%) than prescription drugs. 30% used NHP as a last resort for the treatment of a chronic disease. Nearly half (49%) of the users believed that if the government pays for prescription drugs, it should also pay for herbal remedies; 36% said the consumer should pay. In light of the extensive use of NHP by seniors, there is a need for clinical pharmacology studies of these products.

Who is responsible?:The role of family physicians in the provision of supportive cancer care

Purpose: Patients living with cancer identify family physicians (FPs; ie, primary care physicians) as a preferred resource for supportive cancer care (SCC), either through direct provision or referral. However, little research exists on the specific role FPs play in addressing these needs. Methods: A mailed survey was sent to all FPs in a health care region in Ontario, Canada, to determine their current and preferred roles in the specific provision of SCC to patients with cancer who have been newly diagnosed or are at the end of life. Results: Completed surveys were received from 84 (64%) of 183 eligible FPs. Most practitioners reported providing for their patients' various SCC needs. However, clear gaps were demonstrated in psychosocial and nutritional counseling and in providing information about SCC services. FPs were satisfied with their current role reported in SCC coordination, although the type of role varied; FPs who were asked about their end-of-life patients tended to see themselves as part of coordinating teams, whereas FPs asked about their recently diagnosed patients were more likely to defer this responsibly to a third party. Conclusion: This study identified gaps in the provision of psychosocial and informational care to patients with cancer that may result in unmet needs. In general, FPs do not see themselves as primarily responsible for coordinating patients' SCC and do not wish to assume this role. Accordingly, models that involve FPs as team members in SCC coordination are more feasible for reducing patient need. Copyright © 2010 by American Society of Clinical Oncology.

The influence of health education on family management of childhood asthma

The purpose of this study was to examine differences in asthma management among families with a child who has moderate to severe asthma. Half of the 50 families chosen for study had participated in an intensive in-patient asthma treatment program and half had participated in an out-patient day camp. Two broad categories of outcome were examined - illness and self-management skills. Families who participated in the in-patient program exhibited a pattern of illness behaviours which indicated asthma symptoms were better managed in comparison to those families that participated in the out-patient program. It was also observed that children who participated in the in-patient program had a tendency to feel more positive about having asthma with the more self-management behaviours they practised. On the other hand, children from the out-patient program reported a more negative attitude about having asthma with the more self-management behaviours they practised.

Health care needs of community-dwelling older adults

Objective. To identify, assess, and rank the importance of health care needs of community-dwelling older adults. Method. A structured telephone interview with 107 respondents (physicians, direct service providers and administrators) about the importance of a list of 31 health care needs of older adults. Respondents also identified the single most important health issue facing local older adults now and in the next 5 to 10 years. Results. The five most important health care needs, in descending order, are: care-giver support services, community long-term care services services for people with demential/Alzheimer's disease, palliative/end-of-life care, and services for cancer patients and their families. Community long-term care services were identified as the single most important health issue both now and in the next 5 to 10 years. Conclusion. The study findings should be of value to health and social service researchers, planners, providers and administrators regarding the needs of community-dwelling older adults.

Geographic atrophy in retinal angiomatous proliferation

Purpose: To describe the occurrence of geographic atrophy in patients with retinal angiomatous proliferation (RAP). Methods: Demographics, visual acuity, color fundus photographs, fluorescein and indocyanine green angiograms, and fundus autofluorescence and near-infrared autofluorescence images were reviewed in 53 patients (66 eyes) with RAP. Results: Of 53 treatment-naive eyes, 19 (36%) had atrophy at baseline. Of 66 eyes, 57 (86%) developed de novo atrophy or enlargement of preexisting areas of atrophy during the follow-up (median, 17 months; range, 3-53 months) after treatment. Areas of atrophy were observed at the site of the RAP (58 of 66 eyes, 88%) of a previously existing pigment epithelial detachment (18 of 44 eyes; 41%) and elsewhere (43 of 66 eyes, 65%). At presentation, RAP was found to be frequently associated with increased autofluorescence at the fovea because of cystoid macular edema (36 of 53 eyes, 68%) and reduced autofluorescence because of hard exudation (38 of 53 eyes, 72%) and intraretinal hemorrhages (32 of 53 eyes, 60%). Background reticular (39%) and homogeneous (36%) autofluorescence were most commonly observed. Conclusion: Geographic atrophy occurs frequently in patients with RAP after treatment. This information, if confirmed in other cohorts, would be valuable for the counseling of patients with this disease and for the understanding of the pathogenesis of this condition and its progression after treatment. Copyright © 2011 Lippincott Williams &Wilkins.

A Longitudinal Study of Stargardt Disease: Clinical and Electrophysiologic Assessment, Progression, and Genotype Correlations

Purpose: To investigate the clinical and electrophysiologic natural history of Stargardt disease and correlate with the genotype. Design: Cohort study of 59 patients. Methods: Clinical history, examination, and electrophysiologic assessment were undertaken in a longitudinal survey. Patients were classified into 3 groups based on electrophysiologic findings, as previously published: Group 1 had dysfunction confined to the macula; Group 2 had macular and generalized cone system dysfunction; and Group 3 had macular and both generalized cone and rod system dysfunction. At baseline, there were 27 patients in Group 1, 17 in Group 2, and 15 in Group 3. Amplitude reduction of >50% in the relevant electroretinogram (ERG) component or a peak time shift of >3 ms for the 30 Hz flicker ERG or bright flash a-wave was considered clinically significant ERG deterioration. Molecular screening of ABCA4 was undertaken. Results: The mean age at baseline was 31.7 years, with the mean follow-up interval being 10.5 years. A total of 22% of patients from Group 1 showed ERG group transition during follow-up, with 11% progressing to Group 2 and 11% to Group 3. Forty-seven percent of patients in Group 2 progressed to Group 3. There was clinically significant ERG deterioration in 54% of all subjects: 22% of Group 1, 65% of Group 2, and 100% of Group 3. At least 1 disease-causing ABCA4 variant was identified in 47 patients. Conclusions: All patients with initial rod ERG involvement demonstrated clinically significant electrophysiologic deterioration; only 20% of patients with normal full-field ERGs at baseline showed clinically significant progression. Such data assist counseling by providing more accurate prognostic information and are also highly relevant in the design, patient selection, and monitoring of potential therapeutic interventions. © 2013 Elsevier Inc. All rights reserved.

Late-stage, primary open-angle glaucoma in Europe:Social and health care maintenance costs and quality of life of patients from 4 countries

Objective: The purpose of this study was to estimate costs and quality of life (QoL) of late-stage glaucoma patients in 4 European countries. Methods: Retrospective review of medical charts of patients with POAG who were followed in a low-vision or vision rehabilitation center in one of 4 countries for at least 1 year was used to determine patient characteristics, health status, and health care resource use. Visual impairment was measured by best-corrected visual acuity (Snellen score). Patients were also interviewed over the telephone in order to assess their health-related QoL (using EuroQol EQ-5D) and use of resources including: the number of visits to rehabilitation centers, visits to hospital and non-hospital specialists, the use of low-vision devices, medication, tests, and the use of hired home help. The costs associated with resource use were calculated from the perspective of a third-party payer of health and social care based on resource usage and unit costs in each country. Results: Patients undergoing visual rehabilitation in France (n=21), Denmark (n=59), Germany (n=60), and the United Kingdom (n=22) were identified, interviewed and had their medical charts reviewed. Annual maintenance costs of late-stage glaucoma amounted to €830 (±445) on average. Average home help costs were more than 3 times higher. QoL, on average, was 0.65 (±0.28). QoL was positively correlated with the level of visual acuity in the patients' best eye. On the other hand, visual acuity was also positively correlated to health care costs, but negatively correlated to costs of home help. Conclusions: The study was limited by its observational, uncontrolled design. The finding that late-stage glaucoma is associated with higher home help costs than health care maintenance costs suggests that potential savings from a better preventive treatment are to be found for social care payers rather than health care payers. © 2008 Informa UK Ltd All rights reserved.

Reducing the psychological distress of family caregivers of home based palliative care patients: Longer term effects from a randomised controlled trial.

Background: Palliative care incorporates comprehensive support of family caregivers because many of them experience burden and distress. However, evidence-based support initiatives are few.

Purpose: We evaluated a one-to-one psychoeducational intervention aimed at mitigating the distress of caregivers of patients with advanced cancer receiving home-based palliative care. We hypothesised that caregivers would report decreased distress as assessed by the General Health Questionnaire (GHQ).

Method: A randomised controlled trial comparing two versions of the delivery of the intervention (one face-to-face home visit plus telephone calls versus two visits) plus standard care to a control group (standard care only) across four sites in Australia.

Results: Recruitment to the one visit condition was 57, the two visit condition 93, and the control 148. We previously reported non-significant changes in distress between times 1 (baseline) and 2 (1-week post-intervention) but significant gains in competence and preparedness. We report here changes in distress between times 1 and 3 (8-week post-death). There was significantly less worsening in distress between times 1 and 3 in the one visit intervention group than in the control group; however, no significant difference was found between the two visit intervention and the control group.

Conclusions: These results are consistent with the aim of the intervention, and they support existing evidence demonstrating that relatively short psychoeducational interventions can help family caregivers who are supporting a dying relative. The sustained benefit during the bereavement period may also have positive resource implications, which should be the subject of future inquiry. © 2014 The Authors. Psycho-Oncology published by John Wiley & Sons Ltd.