The protocol for the Families First Edmonton trial (FFE): a randomized community-based trial to compare four service integration approaches for families with low-income.

BACKGROUND: Families with low incomes experience an array of health and social challenges that compromise their resilience and lead to negative family outcomes. Along with financial constraints, there are barriers associated with mental and physical health, poorer education and language. In addition, vulnerable populations experience many services as markedly unhelpful. This combination of family and service barriers results in reduced opportunities for effective, primary-level services and an increased use of more expensive secondary-level services (e.g., emergency room visits, child apprehensions, police involvement). A systematic review of effective interventions demonstrated that promotion of physical and mental health using existing service was critically important. METHODS/DESIGN: The Families First Edmonton Trial (FFE) tests four service integration approaches to increase use of available health and social services for families with low-income. It is a randomized, two-factor, single-blind, longitudinal effectiveness trial where low-income families (1168) were randomly assigned to receive either (1) Family Healthy Lifestyle plus Family Recreation service integration (Comprehensive), (2) Family Healthy Lifestyle service integration, (3) Family Recreation service integration, or (4) existing services. To be eligible families needed to be receiving one of five government income assistance programs. The trial was conducted in the City of Edmonton between January 2006 and August 2011. The families were followed for a total of three years of which interventional services were received for between 18 and 24 months. The primary outcome is the number of family linkages to health and social services as measured by a customized survey tool "Family Services Inventory". Secondary outcomes include type and satisfaction with services, cost of services, family member health, and family functioning. Where possible, the measures for secondary outcomes were selected because of their standardization, the presence of published norming data, and their utility as comparators to other studies of low-income families. As an effectiveness trial, community and government partners participated in all committees through a mutually agreed upon governance model and helped manage and problem solve with researchers. DISCUSSION: Modifications were made to the FFE trial based on the pragmatics of community-based trials. TRIAL REGISTRATION NUMBER: ClinicalTrials.gov NCT00705328.

Is "treat your child normally" helpful advice for parents of survivors of treatment of hypoplastic left heart syndrome?

BACKGROUND: Developing technology affords children with complex congenitally malformed hearts a chance for survival. Parents gratefully pursue life-saving options on behalf of their children, despite the risks to the life of their child, and uncertainty about outcomes. Little is known about how mothers and fathers experience parenting a child whose new state as a survivor may include less than optimal developmental sequels. METHOD: Our study involved multiple interactive interviews with 9 mothers and 7 fathers of infants and preschool children with hypoplastic left heart syndrome who had survived the Norwood surgical approach. Qualitative methodology included grounded theory methods of simultaneous collection and analysis of data, and we used open and selective coding of transcribed interviews. RESULTS: Parents used normalization in the context of uncertainty regarding the ongoing survival of their child. Parents described their underweight children as being on their own growth curve, and viewed their developmental progress, however delayed, as reason for celebration, as they had been prepared for their child to die. CONCLUSION: There is growing evidence that children with congenitally malformed hearts who require surgical intervention during the first year of life may experience developmental delay. The use of normalization by their parents may be effective in decreasing their worry regarding the uncertain future faced by their child, but may negatively affect the developmental progress of the child if they do not seek resources to assist development. Advice from paediatric specialists for parents to view their children as normal needs to be balanced with assistance for parents to access services to support optimal growth and development of their child.

Participatory action research: practical strategies for actively engaging and maintaining participation in immigrant and refugee communities.

In this research we examined the processes involved in implementing and maintaining a participatory action research (PAR) project by uncovering how theoretical PAR tenets hold up in the reality of a community-based project addressing immigrants' and refugees' mental health needs. Qualitative data from focus groups with these newcomers were analyzed for thematic content. Findings reveal that active participation is seen as the gateway into a PAR project, whereas knowledge attainment and empowerment are the stimuli for continued participation. The data also suggest that newcomers' motivations to participate in a PAR-oriented project might vary across ethno-cultural groups. Practitioners working in community-based initiatives would do well to appeal to the diversity of motivational factors, while endorsing individual and group strengths.

Supported-employment program processes and outcomes: experiences of people with schizophrenia.

OBJECTIVE: This qualitative study explored participants' experiences of a supported-employment program. Understanding participants' opinions of a supported-employment program may provide insights into what processes and outcomes are meaningful and important for participants and may enable an evaluation of such processes and outcomes for their congruence with occupational therapy practice. METHOD: Supported-employment program participants with schizophrenia (N= 7) were recruited from an agency and interviewed individually with open-ended questions. Data were analyzed using a grounded-theory approach. RESULTS: We developed a tentative grounded theory with three themes of supported-employment program outcomes: (a) removing barriers to job seeking, (b) improving psychological well-being, and (c) participating in work. CONCLUSION: Supported-employment program participants can achieve meaningful personal outcomes even though they do not obtain competitive employment. These programs removed barriers to job seeking, but personal readiness and efforts in job seeking contributed most to obtaining employment.

Low-income Canadians' experiences with health-related services: implications for health care reform.

This study investigated the use of health-related services by low-income Canadians living in two large cities, Edmonton and Toronto. Interview data collected from low-income people, service providers and managers, advocacy group representatives, and senior-level public servants were analyzed using thematic content analysis. Findings indicate that, in addition to health care policies and programs, a broad range of policies, programs, and services relating to income security, recreation, and housing influence the ability of low-income Canadians to attain, maintain, and enhance their health. Furthermore, the manner in which health-related services are delivered plays a key role in low-income people's service-use decisions. We conclude the paper with a discussion of the health and social policy implications of the findings, which are particularly relevant within the context of recent health care reform discussions in Canada.

Service-integration approaches for families with low income: a Families First Edmonton, community-based, randomized, controlled trial.

BACKGROUND: Increasing access to health and social services through service-integration approaches may provide a direct and sustainable way to improve health and social outcomes in low-income families. METHODS: We did a community-based randomized trial evaluating the effects of two service-integration practices (healthy family lifestyle and recreational activities for children) among low-income families in Alberta, Canada. These two practices in combination formed four groups: Self-Directed (no intervention), Family Healthy Lifestyle, Family Recreation, and Comprehensive (Family Healthy Lifestyle plus Family Recreation programs). The primary outcome was the total number of service linkages. RESULTS: We randomized 1168 families, 50 % of which were retained through the last follow-up visit. The number of service linkages for all three intervention groups was not significantly different from the number of linkages in the Self-Directed group (Comprehensive 1.15 (95 % CI 0.98-1.35), Family Healthy Lifestyle 1.17 (0.99-1.38), and Family Recreation 1.12 (0.95-1.32) rate ratios). However, when we explored the number of linkages by the categories of linkages, we found significantly more healthcare service linkages in the Comprehensive group compared to the Self-Directed group (1.27 (1.06-1.51)) and significantly more linkages with child-development services in the Family Healthy Lifestyle group compared to the Self-Directed group (3.27 (1.59-6.74)). The monthly hours of direct intervention was much lower than the assigned number of hours (ranging from 5 to 32 % of the assigned hours). CONCLUSIONS: Our findings are relevant to two challenges faced by policymakers and funders. First, if funds are to be expended on service-integration approaches, then, given the lack of intervention fidelity found in this study, policymakers need to insist, and therefore fund a) a well-described practice, b) auditing of that practice, c) retention of family participants, and d) examination of family use and outcomes. Second, if child-development services are widely required and are difficult for low-income families to access, then current policy needs to be examined. TRIAL REGISTRATION: ClinicalTrials.gov, NCT00705328 . Registered on 24 June 2008.

Welfare reforms and the cognitive development of young children.

PURPOSE: To investigate whether the cognitive development of young children in poverty is affected by activities of their primary caregiver and by household income source, which are two components of family poverty experience that have been affected by recent welfare reforms. METHODS: Bivariate and multivariate analyses were used to examine the relationships that caregiver activity, household income source, and family characteristics (family income adequacy, caregiver depressive symptoms, caregiver education) have with the cognitive development of 59 impoverished children less than three years old. RESULTS: Of the three poverty experience variables included in the multivariate analysis, only employment as the exclusive source of household income had an independent relationship (positive) with children's cognitive development. Two of the family characteristics, income adequacy and caregiver education, also were associated with the children's cognitive score, and they were both better relative predictors than the employment-only income source variable. Income adequacy was positively associated and caregiver education was negatively associated with children's cognitive development. DISCUSSION: Although recent welfare reforms, in combination with economic growth and declining unemployment, have changed the poverty experience of young families by increasing the proportion that secure at least part of their income from employment, our study provides preliminary evidence that these reforms have made little difference for most young impoverished children. Instead, our findings suggest that the cognitive development of young children is influenced as much by the actual amount of household income as by their parents' activity and source of income.

Determinants of health-service use by low-income people.

Poverty influences health status, life expectancy, health behaviours, and use of health services. This study examined factors influencing the use of health-related services by people living in poverty. In the first phase, 199 impoverished users of health-related services in 2 large Canadian cities were interviewed by their peers. In the second phase, group interviews with people living in poverty (n = 52) were conducted. Data were analyzed using thematic content analysis. Diverse health-related services were used to meet basic and health needs, to maintain human contact, and to cope with life's challenges. Use of services depended on proximity, affordability, convenience, information, and providers' attitudes and behaviours. Use was impeded by inequities based on income status. To promote the health of people living in poverty, nurses and other health professionals can enhance the accessibility and quality of services, improve their interactions with people living in poverty, provide information about available programs, offer coordinated community-based services, collaborate with other sectors, and advocate for more equitable services and policies.

Implementation of provincial/territorial health goals in Canada.

During the past two decades, policy makers in most of Canada's provinces and territories developed broad population-level goal statements about desired health or health and social outcomes. The health goals development process used in each province/territory has been described in government documents and studied by a small number of researchers. However, there is a lack of published research examining the implementation and use of the health goals since they were developed. To begin to fill this gap, we conducted a study between 1998 and 2000 that examined the implementation of provincial/territorial health goals in Canada. Our findings indicate that as the 1990s drew to a close, provincial/territorial health goals were not being used explicitly by policy makers at either provincial/territorial or regional levels in most provinces in Canada to guide health policy and program development, implementation, or evaluation. Instead, the majority of health ministry and regional policy makers were employing strategic/business plans that, at best, reflected or were similar to the original provincial/territorial health goals. Moreover, even though all provinces and the NWT/Nunavut had health goals associated with broad social, economic, and physical environment health determinants, regional-level policy makers were giving priority to health care system goals over all other types of goals. We discuss our findings in relation to studies about health goals in other countries, and we suggest implications that our findings have for both future research and health policy.