Care Policy Development Research Articles

Improving access to inflammatory bowel disease care in Canada: The patient experience.

Canada has one of the highest age-adjusted incidence and prevalence rates of inflammatory bowel disease (IBD). Large patient volumes and limited resources have created challenges concerning the quality of IBD care, but little is known about patients' experiences. This paper aimed to better understand patient-perceived barriers to IBD care. An exploratory qualitative approach was used for this study. Fourteen focus groups (with 63 total participants) were co-facilitated by a researcher and patient research partner across eight Canadian provinces in 2018. Patients diagnosed with IBD (>18 years of age) and their caregivers were purposefully recruited through Crohn's and Colitis Canada, gastroenterology clinics and communities, and national social media campaigns. Focus group sessions were recorded, transcribed, and analyzed using thematic analysis. Most participants self-identified as being white and women. The analysis generated four key themes regarding patient-perceived barriers and gaps in access to IBD care: (1) gatekeepers and their lack of IBD knowledge, (2) expenses and time, (3) lack of holistic care, and (4) care that is not patient-centered. An additional four themes were generated on the topic of patient-perceived areas of health system improvement for IBD care: (1) direct access to care, (2) good care providers, (3) electronic records and passports, and (4) multidisciplinary care or an 'IBD dream team'. This research contributes to the limited global knowledge on patients' experiences accessing IBD care. It is valuable for the development of care plans and policies to target gaps in care. Patients have identified system-level barriers and ideas for improvement, which should be taken into consideration when implementing system redesign and policy change.

Effects of an Online Health Management Program for South Korean Adolescents with Complex Congenital Heart Disease during Their Transition to Adulthood: A Randomized Controlled Trial.

Adolescents with complex congenital heart disease (CHD) are at risk of experiencing complications later in life. The purpose of this study was to develop an online health management program for adolescents with complex CHD and to evaluate its effects on self-efficacy, health behavior, and health-related quality of life. A randomized controlled trial design was used. A total of 29 adolescents with complex CHD were divided into an experimental group of 15 and a control group of 14. Participants in the intervention group took part in the 4-week online health management program (weekly online group sessions, 1:1 phone coaching, dietary diary feedback, and provision of health information) developed based on self-efficacy theory, while those in the control group received standard medical follow-up. Data were collected from August 2021 to March 2022 using a questionnaire-including the Korean Self-Rated Abilities for Health Practices: Health Self-Efficacy Measure (K-SRAHP) and Pediatric Cardiac Quality of Life Inventory (PCQLI)-and an ActiGraph accelerometer to track physical activity and sleep. The intervention group showed significant improvements in health self-efficacy (p = 0.003), psychosocial impact (p = 0.013), daily step counts (p = 0.011), and moderate to vigorous-intensity physical activity (p = 0.027). Additionally, a decrease in weekend leisure time sedentary behavior (p = 0.035) was observed. However, there were no significant differences in sleep behavior between two groups. The online health management program significantly enhanced self-efficacy, health behavior, and psychosocial impact in adolescents with complex CHD. These findings will inform the development of policies for transitional medical care tailored to adolescents with complex CHD.

Impact of the Children's Oncology Group's supportive care clinical practice guideline endorsement program: An institutional survey.

Supportive care clinical practice guidelines (CPGs) facilitate the incorporation of the best available evidence into pediatric cancer care. We aimed to assess the impact of the work of the Children's Oncology Group (COG) Supportive Care Guideline Task Force on institutional supportive care practices. An online survey was distributed to representatives at 209 COG sites to assess the awareness, use, and helpfulness of COG-endorsed supportive care CPGs. Availability of institutional policies regarding 13 topics addressed by current COG-endorsed CPGs was also assessed. Respondents described their institutional processes for developing supportive care policies. Representatives from 92 COG sites responded to the survey, and 78% (72/92) were "very aware" of the COG-endorsed supportive care CPGs. On average, sites had policies that addressed seven COG-endorsed supportive care CPG topics (median = 7, range: 0-12). Only 45% (41/92) of sites reported having institutional processes for developing supportive care policies. Of these, most (76%, 31/41) reported that the COG-endorsed CPGs have a medium or large impact on policy development. Compared with sites without processes for supportive care policy development, sites with established processes had policies on a greater number of topics aligned with current COG-endorsed CPG topics (mean=6.6, range: 0-12vs mean=7.9, range: 2-12; p=0.027). Most site respondents were aware of the COG-endorsed supportive care CPGs. Less than half of the COG sites represented in the survey have processes in place to implement supportive care policies. Improvement in local implementation is required to ensure that patients at COG sites receive evidence-based supportive care.

The analysis of sources on the methodology of demographic transition and impact on the sustainable socio-economic development of the country

The relevance of the study of the methodology of demographic transition lies in its significance for understanding and analyzing population dynamics, the challenges of an aging society, changes in fertility, mortality and migration, as well as assessing the impact on the sustainable socio-economic development of the country. This study has important practical significance for the development of policies for national population management, social protection and health care, as well as for forecasting trends in the development of society and its sustainability in the long term. The purpose of the study is to analyze various sources devoted to the methodology of demographic transition, including from the standpoint of influence on the sustainable development of the state. The authors seek to identify the main approaches used in research on this topic, evaluate their effectiveness and identify the most significant results obtained in this area. The research methodology includes a systematic review of the literature and analysis of various sources devoted to the methodology of demographic transition, on the basis of which five main approaches are formed, their drivers and mechanisms are identified, and recommendations for further research in this area are offered. The authors discuss current trends that researchers are facing, and also highlight promising directions for future research on the impact of demographic transition methodology on the sustainable development of the country.

Changes Under Pressure: Mapping Recent Developments in Long-Term Care Policy

Social, economic, and technological challenges have imposed transformations of the long-term care services in order to improve the system efficiency, the quality of services and the satisfaction of beneficiaries. The article aims to provide a review of the policy reforms and performance of the long-term care system in Romania. To support the effects of these transformations, a review of the scientific literature was conducted. We then highlighted characteristics of the current long-term care system that are evolving in response to the changing social and economic environment. Several issues related to the public financing, labor force, quality assurance, and unmet needs are discussed. The analysis suggests that evaluation of the long-term care system in terms of sustainability, health and quality of life of beneficiaries and their families impose a good coverage with long-term care quality services. Policy makers should ensure adequate collection of data to substantiate further policy measures, as well as full implementation of the long-term care policy.

The Social Determinants of Health Industry: Two Years On.

Social determinants of health (SDOH) have been insufficiently addressed by payers and providers despite increased prioritization at the national level. This led to the development of a separate, for-profit "SDOH industry" found to have a valuation of $18.5 billion (all dollar amounts in U.S. dollars) with $2.4 billion in funding as of July 2021. The purpose of this article is to determine the growth of the industry from 2021 to 2023 and provide a multifaceted explanation for this development. The authors conducted an analysis of 57 SDOH industry companies using a third-party market research platform. Over the previous two-year period, 10 out of 57 (18%) companies were acquired, and the industry gained an additional $1.1 billion (46% increase) in funding and $13.7 billion (74% increase) in valuation. The authors propose four contributing factors to explain the nature of this industry's evolution. They include developments in national health care policy favoring SDOH, standardization of SDOH information as actionable claims data, multi-source investment in SDOH, and improved methods of industry intervention measurement. These trends appear likely to continue, requiring additional scrutiny by all relevant stakeholders to ensure maximum improvement of rampant SDOH disparities that impact millions of individuals daily.

Indigenous people's experiences of primary health care in Canada: a qualitative systematic review.

Indigenous people in Canada encounter negative treatment when accessing primary health care (PHC). Despite several qualitative accounts of these experiences, there still has not been a qualitative review conducted on this topic. In this qualitative systematic review, we aimed to explore Indigenous people's experiences in Canada with PHC services, determine urban versus rural or remote differences and identify recommendations for quality improvement. This review was guided by the Joanna Briggs Institute's methodology for systematic reviews of qualitative evidence. MEDLINE, CINAHL, PubMed, PsycInfo, Embase and Web of Science as well as grey literature and ancestry sources were used to identify relevant articles. Ancestry sources were obtained through reviewing the reference lists of all included articles and determining the ones that potentially met the eligibility criteria. Two independent reviewers conducted the initial and full text screening, data extraction and quality assessment. Once all data were gathered, they were synthesized following the meta-aggregation approach (PROSPERO CRD42020192353). The search yielded a total of 2503 articles from the academic databases and 12 articles from the grey literature and ancestry sources. Overall, 22 articles were included in this review. Three major synthesized findings were revealed-satisfactory experiences, discriminatory attitudes and systemic challenges faced by Indigenous patients-along with one synthesized finding on their specific recommendations. Indigenous people value safe, accessible and respectful care. The discrimination and racism they face negatively affect their overall health and well-being. Hence, it is crucial that changes in health care practice, structures and policy development as well as systemic transformation be implemented immediately.

“I think they should give primary health care a little more priority”. The primary health care in Caribbean SIDS: what can be said about adaptation to the changing climate? The case of Dominica— a qualitative study

BackgroundAdaptation to climate change (CC) is a priority for Small Island Developing States (SIDS) in the Caribbean, as these countries and territories are particularly vulnerable to climate-related events. Primary health care (PHC) is an important contributor to CC adaptation. However, knowledge on how PHC is prepared for CC in Caribbean SIDS is very limited. The aim of this paper is to discuss health system adaptation to climate change, with a focus on PHC.MethodsWe explored the perspectives of PHC professionals in Dominica on PHC adaptation to climate change. Focus group discussions (FGDs) were conducted in each of the seven health districts in Dominica, a Caribbean SIDS, between November 2021 and January 2022. The semi-structured interview guide was based on the Essential Public Health Functions: assessment, access to health care services, policy development and resource allocation. Data coding was organized accordingly.ResultsFindings suggest that health care providers perceive climate change as contributing to an increase in NCDs and mental health problems. Climate-related events create barriers to care and exacerbate the chronic deficiencies within the health system, especially in the absence of high-level policy support. Healthcare providers need to take a holistic view of health and act accordingly in terms of disease prevention and health promotion, epidemiological surveillance, and ensuring the widest possible access to healthcare, with a particular focus on the environmental and social determinants of vulnerability.ConclusionThe primary health care system is a key stakeholder in the design and operationalization of adaptation and transformative resilience. The Essential Public Health Functions should integrate social and climate and other environmental determinants of health to guide primary care activities to protect the health of communities. This study highlights the need for improved research on the linkages between climate events and health outcomes, surveillance, and development of plans informed by contextual knowledge in the SIDS.

New forms of family care in cultural and institutional contexts. Introduction to the Special Collection

Objective: This special collection aims to contribute to theory and research on the cultural and institutional contexts of care and on the relationship between care policies, gender and the family. Background: Since the 1990s, many European welfare states have not only extended social rights and infrastructure related to extra-familial care, but have also expanded support for care by family members. So far, research on family care in the context of contemporary care policies remains scarce. Method: The special collection’s seven articles present theoretical debates related to family care and apply research on cross-national differences and intergroup differences using a variety of quantitative and qualitative methods. Results: By taking a multidimensional perspective on family care for older people, the special collection offers new insights into institutional and cultural family care contexts, the social risks and scope of action connected with family care and the consequences of the development of care policies for the relationship between family, gender and care. Conclusion: The special collection demonstrates that the systematic analysis of the development of family care in its institutional and cultural contexts, as well as the consequences for the development of social risks and scope of action connected with family care, enhances our understanding of the changing relationship between family, gender and care.

Reducing Cancer Risk Through Primary Prevention Activities Among Children: A Demonstration Project.

Opportunities to reduce the risk of cancer, including cervical, liver, and skin cancer, start early in life. To encourage adoption of primary prevention activities in childhood to reduce cancer risk later in life, Centers for Disease Control and Prevention conducted a demonstration project with 3 National Comprehensive Cancer Control Program (NCCCP) recipients. Iowa, Northwest Portland Area Indian Health Board (NPAIHB), and Pennsylvania NCCCP recipients implemented evidence-based primary prevention activities for cervical, liver, and skin cancer among children using health care provider education, patient education, and policy development. Iowa implemented an announcement approach to improve provider education on human papillomavirus (HPV) vaccination. Pennsylvania focused on patient education for reducing skin cancer risk and both provider and patient education for liver cancer prevention. NPAIHB created a sun safety intervention for tribal organizations, including a policy guide, media materials, and patient education. In Iowa, health care providers taking the announcement approach reported significantly higher mean scores on a posttest compared with a pretest regarding perceptions about HPV vaccination, self-efficacy, and behavioral intentions related to vaccination. Pennsylvania integrated sun safety education and sunscreen dispenser programs as a health and wellness initiative in 8 state parks and the Pennsylvania Department of Conservation and Natural Resources incorporated the program in its Pennsylvania Outdoor Recreation Plan. Pennsylvania also implemented health care provider education on the primary prevention of liver cancer through hepatitis B and hepatitis C screening and hepatitis B vaccination. The NPAIHB skin cancer policy guide was created and distributed for use to all 43 federally recognized tribes of Oregon, Washington, and Idaho served by NPAIHB. The identification, dissemination, and implementation of these efforts can serve as best practices for future childhood primary prevention programs. NCCCP recipients and public health professionals can use health care provider education, patient education, and policy development to reduce future risk for cervical, liver, and skin cancer among children.

NCMHR advocates for recovery‐oriented services on many fronts

The National Coalition for Mental Health Recovery (NCMHR; www.ncmhr.org) was established in 2006 to ensure persons with lived experience of mental health challenges would have a voice to shape the development and implementation of mental health care and social policies at the national and state levels.

Detection rate of decreased intrinsic capacity of older adults: a systematic review and meta-analysis.

To systematically assess the prevalence of decreased intrinsic capacity in older adults, stratified by relevant factors such as country, sex, sample source, and region. We conducted a comprehensive search of PubMed, Web of Science, EMBASE, The Cochrane Library, PsychINFO, CINAHL, China Knowledge Resource Integrated Database, Wanfang Database, Weipu Database, and Chinese Biomedical Database to collect studies published on the decline of intrinsic capacity in older adults before February 24, 2023. The results of the study were analyzed using the Stata 15.0 software package, using a random-effects model to estimate thepooled detection rate of decreased intrinsic capacity in older adults. The Joanna Briggs Institute Critical Appraisal Tool was used to assess the quality of all included studies. A total of 16 studies (67,881 older adults in 4 countries) were included. The results showed that the pooled detection rate of decreased intrinsic capacity in older adults was 76.1% (95% CI: 68.0%-84.2%). The 16 studies had obvious heterogeneity, and further subgroup analysis showed that the detection rate of decreased intrinsic capacity in older adults was higher in developed countries, females, and hospitals. Thirteen studies found that the pooled detection rate was 73.7% (95%: CI 64.5%-82.8%) for decreased intrinsic capacity in Chinese older adults, with higher rates in mainland China and Hong Kong than in Taiwan. Our study suggests that intrinsic capacity declines more rapidly in older adults. Understanding the degree of decline in the intrinsic capacity of older adults will help to provide an important basis for the formulation and development of care policies for older adults. PROSPERO (CRD42023402680).

The Affordable Care Act and child asthma: Lowering health care barriers by raising our voices

BackgroundThis policy discussion addresses the provisions of the Affordable Care Act (ACA) that impact children with asthma. PurposeThe purpose of this policy paper is to inform health care professionals and lawmakers about ACA provisions affecting pediatric asthma care and provide recommendations for policy changes that can improve equitable care for children with asthma. MethodsThe issues addressed involve discrimination, Medicaid policy oversight, quality improvement stategy, data collection, school-based health care funding, accountable care organization reimbursement, and the extension of dependent coverage. DiscussionHealth care policy development that focuses on human rights, and not market valuation, could reduce health inequity among children with asthma. ConclusionPolicy recommendations are presented to improve asthma care for a population that is largely vulnerable due to age, socioeconomic status, and discrimination.

Coproduction with Service Users in Adult Social Work: A Study of Service Users’ and Social Workers’ Experiences in Northern Ireland

Abstract Involving service users, in the delivery of health and social care, is a focal point in social policy discourse. Coproduction has become synonymous with anti-oppressive practice and service user empowerment. This article reports on a qualitative study carried out in Northern Ireland which explored service user involvement in adult social care practice and policy development. Semi-structured interviews were completed with service users (n = 6) and social workers (n = 7); thematic analysis was applied to the resultant data. The study was coproduced with service users who informed the research design and were actively involved throughout each phase of the study. Findings suggest that service users are motivated to participate in coproduction and can feel valued in these roles, but meaningful coproduction is a challenge in the current practice environment. Close working relationships, with clear and consistent communication are difficult to maintain amid the current trend of bureaucratisation in our profession. Findings point towards the need for a service-user/social worker alliance which can challenge problematic organisational cultures. Remuneration for service users, engaged in coproduction, is encouraged, alongside organisational recognition of the time and resource necessary for effective coproduction. A procedural and ethical framework for coproduction practices would also be timely.

Participation of Nurses in National Politics and Health Policy Development at Meru Level 5 General Hospital

The nurses in Kenya have the numerical power because they form the highest population of the health care system in Kenya. Despite this, they have been unable to have a strong voice to champion their rights and influence health policy formulation at policy tables. In the hospital management and at national level, the nurses hold mostly subordinate roles compared to medical counterparts. No record exists for nurses who have made it to the Kenyan National Parliament and Senate. Literature on the participation of Nurses in national politics and health policy in Kenya is scanty. This makes the situation wanting because without nurses’ participation at legislative arena the nursing profession will retrogress. The purpose of the study therefore aims at determining the participation of nurses in national politics and health care policy development. The specific focus was to find out the knowledge, perception and participation in health policy development and national politics and health policy development. The study adopted a descriptive cross- sectional study design. Self-administered questionnaires were used to collect data. The sample size was 49 registered nurses. Simple random sampling was used to select the respondents. Knowledge and perception were assessed using a set of questions that were scored on a Likert scale. Data was analyzed using Microsoft Excel 2007. The findings revealed that nurses at Meru Level 5 General Hospital had limited participation in national politics and healthcare policy development, with political participation majorly limited to voting in the general elections and health policy implementation respectively. Very few nurses were engaged in agenda setting, policy formulation and policy evaluation stages. 92% reported that politics was good for the profession, with 65% expressing that political discussions have a direct impact on their salaries and working conditions. All participants (100%) reported that nurses have a responsibility to engage in health policy development because they are knowledgeable and direct healthcare providers. Keywords: Advocacy, Health care policy, Health policy development process, Participation, Politics, Policy.

The development of colonial health care provision in Ghana and Côte d’Ivoire: ca. 1900–55

ABSTRACT Colonial administrations introduced various social infrastructures in Africa. This paper analyses and compares the development of colonial governments' health care provision and policies in Ghana and Côte d’Ivoire from circa 1900 to 1955. Using qualitative and quantitative information from colonial reports, a new dataset captures the development of four factors relevant to these aims: health care expenditures, health care facilities, medical staff, and patients. Deflated health care expenditures per capita were found to be higher in Ghana than in Côte d’Ivoire in almost all years. The number of health care facilities per capita was larger in Côte d’Ivoire than in Ghana, and facilities were more geographically dispersed. Ghana had a lower number of medical staff per capita than Côte d’Ivoire as of the 1920s. Medical staff from Côte d’Ivoire formed the majority of the staff base as early as the mid-1910s. Finally, the analysis shows that the number of patients treated in health care facilities in Ghana was low until the 1920s, and took off as more facilities became available during the 1940s. These findings provide evidence that even two countries that are relatively similar (apart from their colonial history) can have different colonial health care trajectories.

Gender as a Moderator of Spirituality and Spiritual Care in ICU Nurses During COVID-19 Pandemic.

Earlier research has found that female healthcare providers often report greater spirituality and spiritual care than males. This would evoke attention toward factors contributing to such differences, particularly gender. To examine the moderating effects of gender on the relationships between demographic characteristics of ICU nurses and their perceived spirituality and spiritual care. A cross-sectional correlational design was used to recruit a national sample of 865 nurses working in ICUs in Jordan and providing care to patients diagnosed with COVID-19. Data were collected using a self-report bilingual version of Spirituality and Spiritual Care Rating Scale (SSC) and analysed using the SPSS software package. Social status, monthly income, and receiving previous courses or lecture training on spirituality and spiritual care were predictors of higher SSCRS scores. Working with COVID-19 patients was a positive predictor (B = 0.074, p = 0.023), suggesting that working with COVID-19 patients is more likely to have a higher level of SSC. Gender was a negative predictor (B = -0.066, p = 0.046), suggesting that female participants are likelier to have a lower SSC score. Working with patients during the COVID-19 pandemic positively impacted nurses' perception of SCC, but female nurses had lower score than male nurses indicating the need for more emphasis on training female nurses and exploring further the areas in which they need more training and to be able to provide an effective SSC. A sustainable up-to-date training and in-service education programs responding to nurses' needs and emerged emergencies crisis need to be integrated into nursing quality of care policy development.

Oncology in Mozambique: Overview of the Diagnostic, Treatment, and Research Capacity.

Mozambique is one of the poorest countries worldwide, with nearly two thirds of the population living below the poverty line. Similarly to other less developed countries, there is a weak provision of health care for non-communicable diseases due to competing priorities with infectious diseases. Although the leading causes of death in Mozambique in 2019 were Acquired Immune Deficiency Syndrome/Human Immunodeficiency Virus and other sexually transmitted diseases and respiratory infections and tuberculosis, with increasing urbanization and westernization of lifestyles, deaths attributed to cancer are also on the rise. This review summarizes cancer burden, cancer prevention and screening, cancer care resources, and trends in cancer training and research in Mozambique, providing a background for the development of cancer care policies in the country.

Rural and urban differences in quality of dementia care of persons with dementia and caregivers across all domains: a systematic review

BackgroundThere are challenges in healthcare service delivery in rural areas, and this may be especially true for persons with dementia, who have higher needs to access to the healthcare system, and may have difficulties to commute easily and safely to these services. There is a growing body of literature regarding geographical disparities, but there is no comprehensive systematic review of geographical differences in persons with dementia across all domains of care quality. Therefore, the objective of this study is to conduct a systematic review of the literature on rural and urban differences in quality of dementia care outcomes of persons with dementia across all quality-of-care domains.MethodsWe performed a digital search in Ovid MEDLINE on July 16, 2019, updated on May 3, 2021, for French or English records. We selected studies that reported outcome from at least one domain of quality of dementia care (Access, Integration, Effective Care, Efficient Care, Population Health, Safety, and Patient-Centered) in both rural and urban persons with dementia or caregivers. We used rigorous, systematic methods for screening, selection, data extraction and we analyzed outcomes reported by at least two studies using vote counting and appraised the certainty of evidence. Finally, we explored sources of heterogeneity.ResultsFrom the 38 included studies, we found differences in many dementia care domains. Rural persons with dementia had higher mortality rates (Population Health), lower visits to any physicians (Access), more hospitalizations but shorter stays (Integration), higher antipsychotic medications (Safety), lower use of home care services and higher use of nursing home (Patient-Centered Care) compared to urban persons with dementia.ConclusionsThis comprehensive portrait of rural–urban differences in dementia care highlights possible geographically based inequities and can be used by researchers and decision makers to guide development of more equitable dementia care policies.

NGOS and stakeholder cooperation in long term care organizing and delivery: an equal player or an outlier?

This paper summarizes the arguments and counterarguments within the scientific discussion on the issue of inter-sectoral and inter-organizational cooperation in long-term care service policy-making, organizing and delivery with a specific focus on NGO role in it. The main purpose of the research is to explore the current situation, with a specific focus on NGO role in it, and look into some drivers of stakeholder cooperation in LTC organising and delivery and to compare them across public and private LTC providers and NGOs. Systematization of the literary sources and approaches indicates that NGOs’ role in stakeholder cooperation is unique due to the nature of their non-profit philosophy. The relevance of this scientific problem decision is that inter-organisational LTC cooperation with and by tertiary sector organisations has to date received very modest research attention, and is inconclusive and fragmented. This leads to not meeting growing needs for LTC services and increasing public costs. Investigation of the topic first offers empirical evidence on stakeholder cooperation in LTC policy development, organising and delivery across multiple stakeholder groups in three sectors – public, private and NGOs. In addition, it pays specific attention to NGOs role and engagement in LTC and identifies stronger and weaker areas of cooperation with other stakeholders. The paper also identifies several cooperation drivers and measures them in LTC field. The study builds on the findings of a survey of key LTC stakeholders in Lithuania (n=215). Results show that current NGO engagement in cooperation is lower in comparison to public and private LTC service providers and their cooperation is mainly limited to the sphere of LTC service delivery at an individual level, and family members, social workers and other NGOs make key stakeholder groups they cooperate with. The research empirically confirms that NGOs are outliers in cooperation in long-term care policy development, organising and delivery across multiple stakeholder groups. The results of the research can be useful for all the stakeholders in LTC policy field and service provision.