What is 'care quality' and can it be improved by information and communication technology? A typology of family caregivers' perspectives.

INTRODUCTION: With governments worldwide reducing their involvement in the provision of institutional long-term elder care, community-based family caregivers (FCs) have become a key element in policies aimed at improving the quality of healthcare systems and maintaining their financial sustainability. This paper uses data from focus groups with FCs providing care to older adults to describe their approaches to and priorities for achieving care quality and sustainability as they work with formal health and social care systems. It describes FCs' views on information and communications technology (ICT) as potential supports for achieving these care quality and sustainability goals. METHODS: We held 10 focus groups from May 2017 to August 2018 and recruited 25 FCs through a mix of convenience and snowball sampling strategies. We employed an inductive approach and used qualitative thematic content analysis methods to examine and interpret the resulting data. We used NVIVO 12 software for data analysis. RESULTS: Quality of care - as delivered by both FCs themselves, and formal health and social care systems - was a major preoccupation for our participants. They saw communications quality as a key aspect of the broader concept of care quality. Our data analysis produced a typology of communications quality from the FC perspective. Analysis of our data also revealed ICT development opportunities and available products in key areas. CONCLUSIONS: Our findings suggest that the formal care system providers could be more caregiver-oriented in their communications by engaging FCs in the decision-making process and allowing them to express their own concerns and goals. The implication of our findings for those seeking to develop policies and ICT products in support of FCs is that these should focus on human relationships and seek to expand facilitative communications.

An implementation history of primary health care transformation: Alberta's primary care networks and the people, time and culture of change.

BACKGROUND: Primary care, and its transformation into Primary Health Care (PHC), has become an area of intense policy interest around the world. As part of this trend Alberta, Canada, has implemented Primary Care Networks (PCNs). These are decentralized organizations, mandated with supporting the delivery of PHC, funded through capitation, and operating as partnerships between the province's healthcare administration system and family physicians. This paper provides an implementation history of the PCNs, giving a detailed account of how people, time, and culture have interacted to implement bottom up, incremental change in a predominantly Fee-For-Service (FFS) environment. METHODS: Our implementation history is built out of an analysis of policy documents and qualitative interviews. We conducted an interpretive analysis of relevant policy documents (n = 20) published since the first PCN was established. We then grounded 12 semi-structured interviews in that initial policy analysis. These interviews explored 11 key stakeholders' perceptions of PHC transformation in Alberta generally, and the formation and evolution of the PCNs specifically. The data from the policy review and the interviews were coded inductively, with participants checking our emerging analyses. RESULTS: Over time, the PCNs have shifted from an initial Frontier Era that emphasized local solutions to local problems and featured few rules, to a present Era of Accountability that features central demands for standardized measures, governance, and co-planning with other elements of the health system. Across both eras, the PCNs have been first and foremost instruments and supporters of family physician authority and autonomy. A core group of people emerged to create the PCNs and, over time, to develop a long-term Quality Improvement (QI) vision and governance plan for them as organizations. The continuing willingness of both these groups to work at understanding and aligning one another's cultures to achieve the transformation towards PHC has been central to the PCNs' survival and success. CONCLUSIONS: Generalizable lessons from the implementation history of this emerging policy experiment include: The need for flexibility within a broad commitment to improving quality. The importance of time for individuals and organizations to learn about: quality improvement; one another's cultures; and how best to support the transformation of a system while delivering care locally.

Stakeholders' engagement in co-producing policy-relevant knowledge to facilitate employment for persons with developmental disabilities.

BACKGROUND: Persons with developmental disabilities (PWDD) face a number of individual, environmental and societal barriers when seeking employment. Integrated knowledge translation (IKT) involves ongoing and dynamic interactions between researchers and stakeholders for the purpose of engaging in mutually beneficial research to address these types of multi-faceted barriers. There is a knowledge gap in the IKT literature on effective stakeholder engagement strategies outside of the dissemination stage to inform policy. In this paper, we report on a number of engagement strategies employed over a 2-year period to engage a wide range of stakeholders in different stages of an IKT project that aimed to investigate the 'wicked' problem of employment for PWDD. METHOD: Our engagement plan included multiple linked strategies and was designed to ensure the meaningful engagement of, and knowledge co-production with, stakeholders. We held two participatory consensus-building stakeholder policy dialogue events to co-produce knowledge utilising the nominal group technique and the modified Delphi technique. A total of 31 and 49 stakeholders engaged in the first and second events, respectively, from six key stakeholder groups. Focused engagement strategies were employed to build on the stakeholder dialogues for knowledge mobilisation and included a focus group attended only by PWDD, a stakeholder workshop attended only by policy/decision-makers, a webinar attended by human resources professionals and employers, and a current affairs panel attended by the general public. RESULTS: Our findings suggest that the level of engagement for each stakeholder group varies depending on the goal and need of the project. Our stakeholder dialogue findings highlight the inherent challenges in co-framing and knowledge co-production through the meaningful engagement of multiple stakeholders who hold different ideas and interests. Focused outreach is needed to foster relationships and trust for meaningful engagement. CONCLUSIONS: In addition to providing guidance on how to implement adaptable meaningful engagement strategies, these findings contribute to discussions on how IKT projects are planned and funded. More studies to explore effective mechanisms for engaging a wide range of stakeholders in IKT research are needed. More evidence of successful engagement strategies employed by researchers to achieve meaningful knowledge co-production is also key to advancing the discipline.

The care capacity goals of family carers and the role of technology in achieving them.

BACKGROUND: As global populations age, governments have come to rely heavily on family carers (FCs) to care for older adults and reduce the demands made of formal health and social care systems. Under increasing pressure, sustainability of FC's unpaid care work has become a pressing issue. Using qualitative data, this paper explores FCs' care-related work goals, and describes how those goals do, or do not, link to technology. METHODS: We employed a sequential mixed-method approach using focus groups followed by an online survey about FCs' goals. We held 10 focus groups and recruited 25 FCs through a mix of convenience and snowball sampling strategies. Carer organizations helped us recruit 599 FCs from across Canada to complete an online survey. Participants' responses to an open-ended question in the survey were included in our qualitative analysis. An inductive approach was employed using qualitative thematic content analysis methods to examine and interpret the resulting data. We used NVIVO 12 software for data analysis. RESULTS: We identified two care quality improvement goals of FCs providing care to older adults: enhancing and safeguarding their caregiving capacity. To enhance their capacity to care, FCs sought: 1) foreknowledge about their care recipients' changing condition, and 2) improved navigation of existing support systems. To safeguard their own wellbeing, and so to preserve their capacity to care, FCs sought to develop coping strategies as well as opportunities for mentorship and socialization. CONCLUSIONS: We conclude that a paradigm shift is needed to reframe caregiving from a current deficit frame focused on failures and limitations (burden of care) towards a more empowering frame (sustainability and resiliency). The fact that FCs are seeking strategies to enhance and safeguard their capacities to provide care means they are approaching their unpaid care work from the perspective of resilience. Their goals and technology suggestions imply a shift from understanding care as a source of 'burden' towards a more 'resilient' and 'sustainable' model of caregiving. Our case study findings show that technology can assist in fostering this resiliency but that it may well be limited to the role of an intermediary that connects FCs to information, supports and peers.

Prioritizing barriers and solutions to improve employment for persons with developmental disabilities.

Purpose: Persons with a developmental disability have the lowest rate of labour force participation relative to other disabilities. The widening gap between the labour force participation of persons with versus without disability has been an enduring concern for many governments across the globe, which has led to policy initiatives such as labour market activation programs, welfare reforms, and equality laws. Despite these policies, persistently poor labour force participation rates for persons with developmental disabilities suggest that this population experiences pervasive barriers to participating in the labour force.Materials and methods: In this study, a two-phase qualitative research design was used to systematically identify, explore and prioritize barriers to employment for persons with developmental disabilities, potential policy solutions and criteria for evaluating future policy initiatives. Incorporating diverse stakeholder perspectives, a Nominal Group Technique and a modified Delphi technique were used to collect and analyze data.Results: Findings indicate that barriers to employment for persons with developmental disabilities are multi-factorial and policy solutions to address these barriers require stakeholder engagement and collaboration from multiple sectors.Conclusions: Individual, environmental and societal factors all impact employment outcomes for persons with developmental disabilities. Policy and decision makers need to address barriers to employment for persons with developmental disabilities more holistically by designing policies considering employers and the workplace, persons with developmental disabilities and the broader society. Findings call for cross-sectoral collaboration using a Whole of Government approach.Implications for RehabilitationPersons with a developmental disability face lower levels of labour force participation than any other disability group.Individual, environmental and societal factors all impact employment outcomes for persons with developmental disabilities.Decision and policy makers need to address barriers to employment for persons with developmental disabilities holistically through policies guiding employers and broader societal behaviour in addition to those aimed at the individuals (such as skill development or training).Due to multi-factorial nature of barriers to employment for persons with developmental disabilities, policy solutions are wide-ranging and fall under the responsibility of multiple sectors for implementation. This calls for cross-sectoral collaboration using a "Whole of Government" approach, with shared goals and integrated responses.

Recruitment of caregivers into health services research: lessons from a user-centred design study.

BACKGROUND: With patient and public engagement in many aspects of the healthcare system becoming an imperative, the recruitment of patients and members of the public into service and research roles has emerged as a challenge. The existing literature carries few reports of the methods - successful and unsuccessful - that researchers engaged in user-centred design (UCD) projects are using to recruit participants as equal partners in co-design research. This paper uses the recruitment experiences of a specific UCD project to provide a road map for other investigators, and to make general recommendations for funding agencies interested in supporting co-design research. METHODS: We used a case study methodology and employed Nominal Group Technique (NGT) and Focus Group discussions to collect data. We recruited 25 family caregivers. RESULTS: Employing various strategies to recruit unpaid family caregivers in a UCD project aimed at co-designing an assistive technology for family caregivers, we found that recruitment through caregiver agencies is the most efficient (least costly) and effective mechanism. The nature of this recruitment work - the time and compromises it requires - has, we believe, implications for funding agencies who need to understand that working with caregivers agencies, requires a considerable amount of time for building relationships, aligning values, and establishing trust. CONCLUSIONS: In addition to providing adaptable strategies, the paper contributes to discussions surrounding how projects seeking effective, meaningful, and ethical patient and public engagement are planned and funded. We call for more evidence to explore effective mechanisms to recruit family caregivers into qualitative research. We also call for reports of successful strategies that other researchers have employed to recruit and retain family caregivers in their research.

Using sustainability as a collaboration magnet to encourage multi-sector collaborations for health.

The World Health Organization Commission on Social Determinants of Health (SDH) places great emphasis on the role of multi-sector collaboration in addressing SDH. Despite this emphasis on this need, there is surprisingly little evidence for this to advance health equity goals. One way to encourage more successful multi-sector collaborations is anchoring SDH discourse around 'sustainability', subordinating within it the ethical and empirical importance of 'levelling up'. Sustainability, in contrast to health equity, has recently proved to be an effective collaboration magnet. The recent adoption of the Sustainable Development Goals (SDGs) provides an opportunity for novel ways of ideationally re-framing SDH discussions through the notion of sustainability. The 2030 Agenda for the SDGs calls for greater policy coherence across sectors to advance on the goals and targets. The expectation is that diverse sectors are more likely and willing to collaborate with each other around the SDGs, the core idea of which is 'sustainability'.

Health in All Policies (HiAP) governance: lessons from network governance.

The Health in All Policies (HiAP) approach requires formal and sustained governance structures and mechanisms to ensure that the policies of various non-health sectors maximize positive and minimize negative impacts on population health. In this paper, we demonstrate the usefulness of a network perspective in understanding and contributing to the effectiveness of HiAP. We undertook an exploratory, qualitative case study of a HiAP structure in Iran, the Kerman province Council of Health and Food Security (CHFS) with diverse members from health and non-health sectors. We analyzed relevant policy texts and interviewed 32 policy actors involved in the CHFS. Data were analyzed using within-case analysis and constant comparative methodology. Our findings suggest that CHFS governance from a network perspective drew in practice on elements of two competing network governance modes: the network administrative organization (NAO) and the lead organization mode. Our results also show that a shift from a hierarchical and market-based mode of interaction to a network logic within CHFS has not yet taken place. In addition, CHFS suffers from large membership and an inability to address complex 'wicked problems', as well as low trust, legitimacy and goal consensus among its members. Drawing on other HiAP studies and commentaries, insights from organization network theory, and in-depth findings from our case study, we conclude that a NAO may be the most effective mode of governance for tackling complex social problems in HiAP structures. Since similar studies are limited, and our single case study may not be transferable across all contexts, we suggest that further research be undertaken to explore HiAP structures from a network perspective in different institutional and cultural settings. With increasing emphasis given to HiAP approaches in national and international health policy discourse, it is important that comparative knowledge about the effectiveness of HiAP governance arrangements be developed.

International experiments with different models of allocating funds to facilitate integrated care: a scoping review protocol.

INTRODUCTION: Integrated care is viewed widely as a potential solution to some of the major challenges faced by health and social care systems, such as those posed by service duplication, fragmentation and poor care coordination, and associated impacts on the quality and cost of services. Fragmented models of allocating funds to and across sectors, programmes and providers are frequently cited as a major barrier to integration and countries have experimented with different models of allocating funds to enhance care coordination among service providers and to reduce ineffective care and avoid costly adverse events. This scoping review aims to assess published international experiences of different models of allocating funds to facilitate integration and the evidence on their impacts. METHODS AND ANALYSIS: We will adopt a scoping review methodology due to the potentially vast and multidisciplinary nature of the literature on different models of allocating funds in health and social care systems, as well as the scarcity of existing knowledge syntheses. The framework developed by Arksey and O'Malley will be followed that entails six steps: (1) identifying the research question(s), (2) searching for relevant studies, (3) selecting studies, (4) charting the data, (5) collating, summarising and reporting the results and (6) and conducting consultation exercises. These steps will be conducted iteratively and reflexively, making adjustments and repetitions when appropriate to make sure the literature has been covered as comprehensively as possible. To ensure comprehensiveness of our literature review, we also search a wide range of sources. ETHICS AND DISSEMINATION: An integrated knowledge translation strategy will be pursued by engaging our knowledge users through all stages of the review. We will organise two workshops or policy roundtables/policy dialogues in Alberta and British Columbia with participation of diverse knowledge users to discuss and interpret the findings of our review and to draw out policy opportunities and lessons that can be applied to the context of these two provinces.

Policies supporting informal caregivers across Canada: a scoping review protocol.

INTRODUCTION: As the population ages, governments worldwide have begun seeking ways to support informal caregiving. In this light, Canada is no exception, but despite the centrality of the informal care strategy in elder care, we know little about the intertwining and overlapping policies that have been implemented to support informal caregivers providing assistance to the elderly, and to fellow citizens with disabilities. This review aims to identify the diversity of Canadian national, provincial and territorial policies supporting informal caregivers. It seeks, from its generalist focus on all informal care, to draw out specific observations and lessons for the elder care policy environment. METHODS AND ANALYSIS: Given the vast and multidisciplinary nature of the literature on informal care policy, as well as the paucity of existing knowledge syntheses, we will adopt a scoping review methodology. We will follow the framework developed by Arksey and O'Malley that entails six stages, including: (1) identifying the research question(s); (2) searching for relevant studies; (3) selecting studies; (4) charting the data; (5) collating, summarising and reporting the results; (6) and conducting consultation exercises. We will conduct these stages iteratively and reflexively, making adjustments and repetitions when appropriate to ensure we have covered the literature as comprehensively as possible. We will pursue an iterative integrated knowledge translation (iKT) strategy engaging our knowledge users through all stages of the review. ETHICS AND DISSEMINATION: By adopting an iKT strategy we will ensure our knowledge users directly contribute to the project's policy relevant publications. Upon completion of the review, we will present the findings at academic conferences, publishing a research report, along with an academic peer-reviewed article. Our intent is to develop an online, free-access evidence repository that catalogues the full range of Canada's English language informal care support policies. Finally, the completed review will allow us to publish a series of policy briefs in collaboration with knowledge users illustrating how to promote and better implement informal care support policies. Our study has received ethics approval from the University of Calgary Conjoint Ethics Board.

Banning shisha smoking in public places in Iran: an advocacy coalition framework perspective on policy process and change.

INTRODUCTION: Shisha smoking is a widespread custom in Iran with a rapidly growing prevalence especially among the youth. In this article, we analyze the policy process of enforcing a federal/state ban on shisha smoking in all public places in Kerman Province, Iran. Guided by the Advocacy Coalition Framework (ACF), we investigate how a shisha smoking ban reached the political agenda in 2011, how it was framed by different policy actors, and why no significant breakthrough took place despite its inclusion on the agenda. METHODS: We conducted a qualitative study using a case study approach. Two main sources of data were employed: face-to-face in-depth interviews and document analysis of key policy texts. We interviewed 24 policy actors from diverse sectors. A qualitative thematic framework, incorporating both inductive and deductive analyses, was employed to analyze our data. RESULTS: We found that the health sector was the main actor pushing the issue of shisha smoking onto the political agenda by framing it as a public health risk. The health sector and its allies advocated enforcement of a federal law to ban shisha smoking in all public places including teahouses and traditional restaurants whereas another group of actors opposed the ban. The pro-ban group was unable to neutralize the strategies of the anti-ban group and to steer the debate towards the health harms of shisha smoking. Our analysis uncovers three main reasons behind the policy stasis: lack of policy learning due to lack of agreement over evidence and related analytical conflicts between the two groups linked to differences in core and policy beliefs; the inability of the pro-ban group to exploit opportunities in the external policy subsystem through generating stronger public support for enforcement of the shisha smoking ban; and the nature of the institutional setting, in particular the autocratic governance of CHFS which contributed to a lack of policy learning within the policy subsystem. CONCLUSIONS: Our research demonstrated the utility of ACF as a theoretical framework for analyzing the policy process and policy change to promote tobacco control. It shows the importance of accounting for policy actors' belief systems and issue-framing in understanding how some issues get more prominence in the policy-making process than others. Our findings further indicate a need for significant resources employed by the state through public awareness campaigns to change public perceptions of shisha smoking in Iran which is a deeply anchored cultural practice.

How Health in All Policies are developed and implemented in a developing country? A case study of a HiAP initiative in Iran.

Population health is influenced by many factors beyond the control of health system which should be addressed by other sectors through inter-sectoral collaboration (ISC). Countries have adopted diverse initiatives to operationalize ISC for health such as establishment of Councils of Health and Food Security (CHFSs) and development of provincial Health Master Plans (HMPs) in Iran. The literature, however, provides meager information on how these initiatives have been moved into the top policy agenda, how and by whom they have been formulated and what factors enable or inhibit their implementation. In addressing these knowledge gaps, we employed a qualitative case study approach, incorporating mixed methods: in-depth interviews and a textual analysis of policy documents. Iran founded the Supreme Council of Health and Food Security (SCHFS) at national level in 2006 followed by provincial and district CHFSs to ensure political commitment to ISC for health and Health in All Policies (HiAPs). In 2009, the SCHFS mandated all provincial CHFSs across the country to develop provincial HMP to operationalize the HiAP approach and Kerman was among the first provinces which responded to this call. We selected Kerman province HMP as a case study to investigate the research questions raised in this study. The study revealed two types of leverage, which played crucial role in agenda setting, policy formulation and implementation of HMP including politics (political commitment) and policy entrepreneurs. The multiple streams model was found to be informative for thinking about different stages of a policy cycle including agenda setting, policy formulation and policy implementation. It was also found to be a useful framework in analyzing HiAP initiatives as these policies do not smoothly and readily reach the policy agenda.

Family physician program in Iran: considerations for adapting the policy in urban settings.

Nationwide implementation of Family Physician (FP) program started in 2005 and targeted almost 25,000,000 citizens residing in rural areas and cities with less than 20,000 populations in Iran. Despite its blatant initiation that resulted in some modest achievements, the future of FP looks unclear in Iran. Thus far, no longitudinal evaluation of the implementation and impact of FP program has been conducted. However, meager evidence highlights the facilitating role of an existing and strong Primary Health Care (PHC) network in the implementation of FP in rural areas in Iran. A longstanding challenge, however, as emphasized by most stakeholders, remains to be the expansion of FP program into urban settings, where the PHC is undeveloped and fragile as well as the powerful private sector is resistant. Using an adapted conceptual framework of institutions, ideas, and interests, this policy perspective aims to shed light on main difficulties of FP implementation in urban areas of Iran. We analyze FP policy in the context of ongoing interactions and conflicts among institutions (the structures and rules that shape policies), interests (the groups and individuals influencing policy), and ideas (discourses around policies). Our argument will, we envisage, help plan for more appropriate implementation of FP in cities in Iran, and hopefully beyond.

Implementation status of accrual accounting system in health sector.

INTRODUCTION: Management of financial resources in health systems is one of the major issues of concern for policy makers globally. As a sub-set of financial management, accounting system is of paramount importance. In this paper, which presents part of the results of a wider research project on transition process from a cash accounting system to an accrual accounting system, we look at the impact of components of change on implementation of the new system. Implementing changes is fraught with many obstacles and surveying these challenges will help policy makers to better overcome them. METHODS: The study applied a quantitative manner in 2012 at Kerman University of Medical Science in Iran. For the evaluation, a teacher made valid questionnaire with Likert scale was used (Cranach's alpha of 0.89) which included 7 change components in accounting system. The study population was 32 subordinate units of Kerman University of Medical Sciences and for data analysis, descriptive and inferential statistics and correlation coefficient in SPSS version 19 were used. RESULTS: Level of effect of all components on the implementation was average downward (5.06±1.86), except for the component "management & leadership (3.46±2.25)" (undesirable from external evaluators' viewpoint) and "technology (6.61±1.92) and work processes (6.35±2.19)" (middle to high from internal evaluators' viewpoint). CONCLUSIONS: Results showed that the establishment of accrual accounting system faces infrastructural challenges, especially the components of leadership and management and followers. As such, developing effective measures to overcome implementation obstacles should target these components.

Priority setting and implementation in a centralized health system: a case study of Kerman province in Iran.

The question of how priority setting processes work remains topical, contentious and political in every health system across the globe. It is particularly acute in the context of developing countries because of the mismatch between needs and resources, which is often compounded by an underdeveloped capacity for decision making and weak institutional infrastructures. Yet there is limited research into how the process of setting and implementing health priorities works in developing countries. This study aims to address this gap by examining how a national priority setting programme works in the centralized health system of Iran and what factors influence its implementation at the meso and micro levels. We used a qualitative case study approach, incorporating mixed methods: in-depth interviews at three levels and a textual analysis of policy documents. The data analysis showed that the process of priority setting is non-systematic, there is little transparency as to how specific priorities are decided, and the decisions made are separated from their implementation. This is due to the highly centralized system, whereby health priorities are set at the macro level without involving meso or micro local levels or any representative of the public. Furthermore, the two main benefit packages are decided by different bodies (Ministry of Health and Medical Education and Ministry of Welfare and Social Security) and there is no co-ordination between them. The process is also heavily influenced by political pressure exerted by various groups, mostly medical professionals who attempt to control priority setting in accordance with their interests. Finally, there are many weaknesses in the implementation of priorities, resulting in a growing gap between rural and urban areas in terms of access to health services.