Donna Anderson

The Personal Costs of Caring for a Child with a Disability: A Review of the Literature

This article presents a review of the literature published from 1989 to 2005 for articles that examined the economic burden incurred by families as a result of caring for a child with disabilities. The review was performed according to a comprehensive economic conceptual model developed by the authors and to the guidelines set out by Canadian Coordinating Office for Health Technology Assessment. The analysis indicated that the burden incurred by these families can be substantial, especially among families who care for a child with a severe disability. However, the variability and the quality of methods is such that the return on investment in knowledge of costs in this area is not as high as it could have been had methodological procedures been more standardized. A comprehensive and systematic approach is suggested for future research.

Costs associated with resource utilization during the palliative phase of care: a Canadian perspective.

Objective: This study aimed to evaluate prospectively the resource utilization and related costs during the palliative phase of care in five regions across Canada. Subjects: A cohort of 248 patients registered in a palliative care program and their main informal caregivers were consecutively recruited. Research Design: A prospective research design with repeated measures was adopted. Interviews were conducted at two-week intervals until the patient s passing or up to a maximum of 6 months. Measures: The survey questions prompted participants to provide information on the types and number of goods and services they used, and who paid for these goods and services. Results: The largest cost component for study participants was inpatient hospital care stays, followed by home care and informal caregiving time. In regard to cost sharing, the public health care system (PHCS), the family, and not-for-profit organizations (NFPO) sustained respectively 71.3%, 26.6%, and 1.6% of the mean total cost per patient. Conclusion: Such results provide a comprehensive picture of costs related to palliative care in Canada, by specifying the cost sharing between the PHCS, the family, and NFPO.

Development of Measures of Organizational Leadership for Health Promotion

This study describes the development and psychometric evaluation of four scales measuring leadership for health promotion at an organizational level in the baseline survey (n = 144) of the Alberta Heart Health Project. Content validity was established through a series of focus groups and expert opinion appraisals, pilot testing of a draft based on capacity assessment instruments developed by other provinces involved in the Canadian Heart Health Initiative, and the literature. Psychometric analyses provided empirical evidence of the construct validity and reliability of the organizational leadership scales. Principal component analysis verified the unidimensionality of the leadership scales of (a) Practices for Organizational Learning, (b) Wellness Planning, (c) Workplace Climate, and (d) Organization Member Development. Scale alpha coefficients ranged between .79 and .91 thus establishing good to high scale internal consistencies. These measures can be used by both researchers and practitioners for the assessment of organizational leadership for health promotion and heart health promotion.

The trajectory of palliative care costs over the last 5 months of life: a Canadian longitudinal study

Objective: This study aimed to highlight the trajectory of palliative care costs over the last five months of life in five urban centres across Canada. Subjects: The study sample was comprised of 160 terminally ill patients and their main informal caregivers. Research Design: A first interview took place in the patient’s home, and subsequent follow-up interviews were conducted by telephone at two week intervals until the patient’s passing. Measures: Participants were asked to provide information on the goods and services they used related to the patients’ health condition, and on informal caregiving time. Results: The overall costs of care gradually increased from the fifth to the last month of the patients’ life. A large part of this cost increase was attributable to inpatient care. Among outpatient care costs the largest increase was observed for home care. Informal care costs were particularly high over the last 3 months of life. Conclusions: The knowledge gained from this study would be useful to policy makers when developing policies that could help families caring for a terminally ill loved one at home.

Telehealth readiness assessment tools

In planning a telehealth project, a readiness assessment can help to improve the chances of successful implementation by identifying the stakeholders and the factors that should be targeted. We conducted a literature search and identified six questionnaires on readiness that can be used when implementing telehealth projects. Only one of them was sufficiently generic to be used with all kinds of telehealth projects and with different groups of participants (patients and public, health-care practitioners and organization personnel like health-care managers and technical support managers), but it had rather limited psychometric evaluation. Two of them had had good psychometric evaluation but they were specific to particular telehealth projects and groups of stakeholders. All six published questionnaires were in English. We have developed and validated a French-Canadian version of the practitioner and organizational telehealth readiness assessment tool.

Development of measures of individual leadership for health promotion

PURPOSE This purpose of this research was to develop and establish psychometric properties of scales measuring individual leadership for health promotion. DESIGN/METHODOLOGY/APPROACH Scales to measure leadership in health promotion were drafted based on capacity assessment instruments developed by other provinces involved in the Canadian Heart Health Initiative (CHHI), and on the literature. Content validity was established through a series of focus groups and expert opinion appraisals and pilot testing. Psychometric analyses provided empirical evidence of the construct validity and reliability of the leadership scales in the baseline survey (n = 144) of the Alberta Heart Health Project. FINDINGS Principal component analysis verified the construct of the leadership scales of personal work-related practices and satisfaction with work-related practices. Each of the theoretically a prior determined scales factored into two scales each for a total of four final scales. Scale alpha coefficients (Cronbachs alpha) ranged between 0.71 and 0.78, thus establishing good scale internal consistencies. RESEARCH LIMITATIONS/IMPLICATIONS Limitations include the relatively small sample size used in determining psychometric properties. In addition, further qualitative work would enhance understanding of the complexity of leadership in health organizations. These measures can be used by both researchers and practitioners for the assessment leadership for health promotion and to tailor interventions to increase leadership for health promotion in health organizations. ORIGINALITY/VALUE Establishing the psychometric properties and quality of leadership measures is an innovative step toward achieving capacity assessment instruments which facilitate evaluation of key relationships in developing health sector capacity for health promotion.

An examination of the stages of change construct for health promotion within organizations

PURPOSE The purpose of this research is to examine the organizational stages of change construct of the transtheoretical model of behavior change. DESIGN/METHODOLOGY/APPROACH Data on organizational and individual stages of change for tobacco reduction, physical activity promotion, and heart healthy eating promotion were collected from service provider, senior management, and board level members of provincial health authorities across three data collection periods. FINDINGS Results revealed significant correlations between individual and organizational stages of change for management level respondents, but inconsistent relationships for service providers and no significant correlations for board level respondents. There were no significant differences between respondent levels for organizational stage of change for any of the promotion behaviors. In general, changes in stage failed to predict whether there was a belief in an organizations capability of addressing any of the health promotion activities. There was also a large amount of variance between individual respondents for most health authorities in their reported organizational stages of change for physical activity and healthy eating. PRACTICAL IMPLICATIONS Based on the results of the present study it is concluded that there is little evidence that the organizational stages of change construct is valid. The evidence indicates that assessing individual readiness within an organization may be as effective as asking individuals to report on organizational stages of readiness. ORIGINALITY/VALUE This paper reports on the validity of the organizational stages of change construct in a health promotion context and provides information for those who are considering using it.

Baseline assessment of organizational capacity for health promotion within regional health authorities in Alberta, Canada.

This paper provides a baseline profile of organizational capacity for (heart) health promotion in Albertas regional health authorities (RHAs); and examines differences in perceived organizational health promotion capacity specific to modifiable risk factors across three levels of staff and across capacity levels. Baseline data were collected from a purposive sample of 144 board members, senior/middle managers and service providers from 17 RHAs participating in a five-year time-series repeated survey design assessing RHA capacity for (heart) health promotion. Results indicate low levels of capacity to take health promotion action on the broader determinants of health and risk conditions like poverty and social support. In contrast, capacity for health promotion action specific to physiological and behavioural risk factors is considerably higher. Organizational “will” to do health promotion is noticeably more present than is both infrastructure and leadership. Both position held within an organization as well as overall level of organizational capacity appear to influence perceptions of organizational capacity. Overall, results suggest that organizational “will”, while necessary, is inadequate on its own for health promotion implementation to occur, especially in regard to addressing the broader determinants of health. A combination of low infrastructure and limited leadership may help explain a lack of health promotion action. (Promot Educ 2008;15(2): 6—14)

Scale Development of Individual and Organisation Infrastructure for Heart Health Promotion in Regional Health Authorities

Objective The purpose of this study was to validate measures of individual and organisational infrastructure for health promotion within Albertas (Canada) 17 Regional Health Authorities (RHAs). Design A series of phases were conducted to develop individual and organisational scales to measure health promotion infrastructure. Instruments were designed with focus groups and then pre-tested prior to the validation study. Setting In 1993 all hospitals and Public Health Units in the province of Alberta were regionalised into 17 RHAs, with responsibility for public health, community health, and acute and long-term care. While regionalisation may offer more opportunity for community participation, reorganisation of the public health system may have fragmented and diluted resources and skills for heart health promotion in some RHAs. Infrastructure (for example, human and financial resources), amongst other items, is believed to contribute to the capacity to promote health. Method All 17 RHAs participated in the study, yielding a total of 144 individuals (that is board members, senior/middle management, and front line staff). These representative employees completed a self- administered questionnaire on individual- and organisational-level infrastructure measures. Results Psychometric analyses of survey data provided empirical evidence for the robustness of the measures. Principal component analyses verified the construct validity of the scales, with alpha coefficients ranging from 0.75 to 0.95. Conclusion The scales can be used by health professionals and researchers to assess individual- and organisational-level infrastructure, and tailor interventions to increase infrastructure for health promotion in health organisations.

Developing and validating the French-Canadian version of the practitioner and organizational telehealth readiness assessment tools

Only one telehealth readiness assessment tool, that of Jennett et al., covers all types of telehealth projects, regardless of health-care provision context. However, this instrument is only available in English and has not undergone psychometric evaluation. We developed a French-Canadian version of the Practitioner Telehealth Readiness Assessment Tool and the Organizational Telehealth Readiness Assessment Tool. Transcultural validity was assessed by nine practitioners and 12 clinical project co-ordinators or administrators. For practitioners and managers, there was no significant difference between the scores of the English and the French versions of the questionnaires. The results showed that the telehealth readiness of co-ordinators or administrators was greater than that of practitioners when the range in scores was taken into account. The French-Canadian versions of the two questionnaires make it possible to assess telehealth readiness among French speakers. However, other studies involving patients will be necessary to validate the Patient-Public Telehealth Readiness Assessment Tool.