Complex Health Care Needs Research Articles

Enhancing Primary Care and Mental Health Integration for Women Veterans with Complex Healthcare Needs Using Evidence-Based Quality Improvement.

Women Veterans with co-morbid medical and mental health conditions face persistent barriers accessing high-quality health care. Evidence-based quality improvement (EBQI) offers a systematic approach to implementing new care models that can address care gaps for women Veterans. This study examines factors associated with the successful deployment of EBQI within integrated health systems to improve primary care for women Veterans with complex mental health needs. Following a 12-site (8 EBQI, 4 control) cluster randomized study to evaluate EBQI effectiveness, we conducted an in-depth case study analysis of one women's health clinic that used EBQI to improve integrated primary care-mental health services for women Veterans. Our study sample included providers, program managers, and clinic staff at a women Veteran's health clinic that, at the time of the study, had one Primary Care and Mental Health Integration team and one women's health primary care provider serving 800 women. We analyzed interviews conducted 12 months, 24 months, and 4 years post-implementation and call summaries between the clinic and support team. We conducted qualitative thematic analysis of interview and call summary data to identify EBQI elements, clinic characteristics, and reported challenges and successes within project development and execution. The clinic harnessed core EBQI elements (multi-level stakeholder engagement, data-driven progress-monitoring, PDSA cycles, sharing results) to accomplish pre-defined project goals, strengthen inter-disciplinary partnerships, and bolster team confidence. Clinic characteristics that facilitated implementation success included prior QI experience and an organizational culture responsive to innovation, while lack of pre-existing guidelines and limited access to centralized databases posed implementation challenges. Successful practice transformation emerges through the interaction of evidence-based methods and site-specific characteristics. Examining how clinic characteristics support or impede EBQI adaptation can facilitate efforts to improve care within integrated health systems.

A Person-Centered Care Dashboard for Individuals With Complex Health Care Needs—Charting a Course for the Future

A Person-Centered Care Dashboard for Individuals With Complex Health Care Needs—Charting a Course for the Future

How Persons Living with Complex Health and Social Care Needs and Their Caregivers Perceived Integrated Patient Care

The International Journal of Integrated Care (IJIC) is an online, open-access, peer-reviewed scientific journal that publishes original articles in the field of integrated care on a continuous basis.IJIC has an Impact Factor of 5.120 (2020 JCR, received in June 2021)The IJIC 20th Anniversary Issue was published in 2021.

Enhancing care of children with complex healthcare needs: an improvement project in a community health organisation in Ireland

BackgroundIntegration of care for children with complex care needs is developing slowly internationally. There remains wide variation in the governance of, and access to, care for these children and their...

A Mixed-Methods Study of the Experiences and Beliefs of Older People With Complex Health Care Needs About Medication Adherence.

Medication adherence is seldom examined in older people from diverse ethnic, cultural, and language backgrounds. The purpose of this study was to explore medication adherence among culturally diverse older people with complex health care needs. Using a mixed-methods design, a consecutive sample of 40 older people living in a culturally diverse, low socioeconomic area completed the Brief Medication Questionnaire; 12 reporting high medication nonadherence were interviewed. Analyses used descriptive statistics and thematic analyses. Participants experienced high medication nonadherence (n = 34, 85%), language barriers (n = 15, 37.5%), financial difficulties (n = 24, 60%), and poor understanding of their medications (n = 34, 85%). Medication nonadherence was attributed to finger dexterity (57.5%), poor vision (85%), and memory problems (87.5%). Interviews revealed 5 themes to explain nonadherence: (1) illness beliefs; (2) experiences of the aging process; (3) challenges for non-English-speaking participants; (4) adherence impediments; and (5) therapeutic relationships. Vulnerable, older people had high medication nonadherence. Targeted interventions may enhance medication adherence in this group.

Placement of Students with Severe Disabilities Who Have Complex Health Care Needs in General Education Classes

Data reveal that insufficient progress has been made in increasing the number of students with severe disabilities who are educated in general education classes. Agran et al. asked why this is happening and discussed determinants that may be affecting placement decisions that serve to segregate students from their peers. This article is a review of the circumstances that have facilitated the movement of students with both severe disabilities and complex health care needs from hospitals and homes, and into school buildings. It also extends Agran et al.’s discussion to placement decisions that may be affecting this specific group of students.

Outpatient Management of Children With Complex Health Care Needs

Children with complex medical histories and acute and/or chronic health conditions may present under different circumstances and with different needs than their peers. This article uses examples to illustrate scenarios and related coding options for capturing the work of caring for children with complex health care needs.

Inclusive Education for Secondary Age Students with Severe Disabilities and Complex Health Care Needs.

Abstract This qualitative study examined the beliefs and experiences of special education teachers about inclusive education for secondary age students with severe disabilities and co-existing comp...

Providing Education to Students With Complex Health Care Needs

Providing Education to Students With Complex Health Care Needs

Providing Education to Students With Complex Health Care Needs

Providing Education to Students With Complex Health Care Needs

Engineering Improved Balance Confidence in Older Adults With Complex Health Care Needs: Learning From the Muscling Up Against Disability Study

ObjectiveTo investigate the associations of balance confidence with physical and cognitive markers of well-being in older adults receiving government-funded aged care services and whether progressive resistance plus balance training could positively influence change. DesignIntervention study. SettingCommunity-based older adult–specific exercise clinic. ParticipantsOlder adults (N=245) with complex care needs who were receiving government-funded aged care support. InterventionsTwenty-four weeks of twice weekly progressive resistance plus balance training carried out under the supervision of accredited exercise physiologists. Main Outcome MeasuresThe primary measure was the Activity-specific Balance Confidence Scale. Secondary measures included the Short Physical Performance Battery; fall history gathered as part of the health history questionnaire; hierarchical timed balance tests; Geriatric Anxiety Index; Geriatric Depression Scale; Fatigue, Resistance, Ambulation, Illness, Loss of Weight scale; and EuroQoL-5 dimension 3 level. ResultsAt baseline, better physical performance (r=.54; P<.01) and quality of life (r=.52; P<.01) predicted better balance confidence. In contrast, at baseline, higher levels of frailty predicted worse balance confidence (r=−.55; P<.01). Change in balance confidence after the exercise intervention was accompanied by improved physical performance (+12%) and reduced frailty (−11%). Baseline balance confidence was identified as the most consistent negative predictor of change scores across the intervention. ConclusionsThis study shows that reduced physical performance and quality of life and increased frailty are predictive of worse balance confidence in older adults with aged care needs. However, when a targeted intervention of resistance and balance exercise is implemented that reduces frailty and improves physical performance, balance confidence will also improve. Given the influence of balance confidence on a raft of well-being determinants, including the capacity for positive physical and cognitive change, this study offers important insight to those looking to reduce falls in older adults.

Engaging Survivors of Human Trafficking: Complex Health Care Needs and Scarce Resources

Human trafficking, also known as modern-day slavery, is an egregious human rights violation associated with wide-ranging medical and mental health consequences. Because of the extensive health problems related to trafficking, health care providers play a critical role in identifying survivors and engaging them in ongoing care. Although guidelines for recognizing affected patients and a framework for developing response protocols in health care settings have been described, survivors' ongoing engagement in health care services is very challenging. High rates of disengagement, lost contact, premature termination, and attrition are common outcomes. For interventions to be effective in this marginalized population, challenges in engaging survivors in long-term therapeutic primary and mental health care must be better understood and overcome. This article uses the socioecological model of public health to identify barriers to engagement; offers evidence- and practice-based recommendations for overcoming these barriers; and proposes an interdisciplinary call to action for developing more flexible, adaptable models of care.

Foreword.

Once again, approaches to health care financing and access in the United States are being publicly debated, and once again, children’s health care is taking a back seat. On the plus side, some of the shortcomings of our current system are coming into greater focus, and fundamental questions about people’s right to health care and how to control health care costs are being voiced. On the other hand, the consideration of the social determinants of health, the social consequences of ill health, and the resulting health disparities (which are issues of special concern for vulnerable populations, especially developing children and children with special health care needs) have not entered the debate.Among the approaches to controlling costs is a focus on the small group of individuals whose medical care accounts for a large portion of health care costs. This group, excluding older adults in their final years of life, tends to have complex medical and social conditions. Perhaps because most children seem to be in good health or because those who do not are few in number (and thus, cost relatively little), insufficient attention is paid to children with complex needs. Yet within the pediatric population, these children (who are characterized as having multiple, significant health problems that affect multiple organ systems; functional limitations; high health care use; and sometimes technology dependence) are most likely to manifest adverse outcomes when health and/or social services systems fail. The health and well-being of these most vulnerable of children are sentinel indicators of the effectiveness of the systems on which they depend.By reputation, although absent much evidence, hospital and subspecialty care for children in the United States is world class. Ironically, the availability of technology and advanced care processes is contributing to the increased number of children with chronic and complex health conditions. Yet even among tertiary- and quaternary-care settings, there is substantial variation in who receives what care, how much it costs, and the outcomes achieved. Outside those settings, shortcomings in services for children with special health care needs are even more apparent; access to comprehensive, coordinated, and family-centered care is the exception rather than the rule.Most of the problems in gaining access to quality health care are systemic, reflecting the additional time, skills, staffing, support, and payment that these children’s team-based care requires. Equally troubling is that many other problems arise from the longstanding fragmentation of services for children and families among physical and mental health, education, developmental disability and social services, and the failure to coordinate among them. Any family with a child with special health care needs can articulate the burden this places on their ability to care for their child.In this supplement, we build on presentations and discussion from a symposium held in December 2015 at the National Academy of Sciences called “Designing Systems That Work for Children with Complex Health Care Needs.” The symposium, which was sponsored by the Lucile Packard Foundation for Children’s Health, was brought together in an effort to contribute to addressing some of the longstanding, systemic issues that affect the care of children with complex health conditions.The goal of the Lucile Packard Foundation for Children’s Health is to improve the US system of care for children with chronic and complex health care needs. Our work is intended to ensure that all children have access to high-quality, culturally competent, family-centered health care when and where they need it, provided through a delivery system that recognizes their unique physical and developmental needs and potential. Our hope is that in the articles in this supplement, we can help clarify some of the difficult, systemic issues and challenges that affect health care for these children and point the way toward their resolution.Throughout 2018 we will be hosting online discussions between the authors of articles in this supplement and key stakeholders in the field. Join us for the conversations or access the archived material at lpfch.org/aapsupplement.

Opening the Door Further: Integrating Students with Complex Health Care Needs

Opening the Door Further: Integrating Students with Complex Health Care Needs

A Community Virtual Ward Supporting Integrated Care for Older Persons with Complex Health and Social Care Needs.

Introduction: The aging population within the Republic of Ireland is increasing exponentially to approximately 20,000 per year. As a result there is an increase in frail older persons living within the community with increased risks of emergency department (ED) presentations and hospital admissions. Better co-ordinated care with targeted specific interventions can assist with admission avoidance and unplanned hospital admission and is seen as key to supporting patients at home (1). The use of virtual wards have increased in popularity in providing a framework for risk stratification and supporting integration of care across primary and acute settings(2-4) Practice change implementation: In January 2015 a community virtual ward was implemented within North Dublin operating on a traffic light system of red (high risk), amber (moderate risk), green (low risk). A number of assessment tools reviewing frailty, function, cognition and risk of a hospital admission were used to determine overall risk and response to interventions overtime. Targeted population and key stakeholders: The model of care focused on older persons > 65 average age 81.6 years (SD + 5.7 years) living at home with 2 or more co-morbidities and evidence of clinical or functional decline within a 30 day time frame. Key stakeholders included the clinical case manager older persons, primary care services, older persons services, acute hospital specialist gerontology as well as the Day Hospital, the ED, frailty intervention therapy team (FITT), hospital bed management, Royal College of Surgeons Ireland, School of Nursing and Midwifery, Nursing and Midwifery Planning and Development Unit (North Dublin) Timeline: The initiative is ongoing with plans to expand due to the development of an integrated care team within North Dublin. Outcomes: A total 85 patients have been through the community virtual ward with evidence of a significant reduction in the median unplanned hospital admissions (1, IQR 0-1) in comparison to the number of unplanned hospital admissions prior to CVW interventions (0, IWR-0-0, z=4.79, P=0.001). ED presentations were also reduced (ED presentations pre median 1= IQR 0.2 ED presentations post median 0, IQR 0-1 z=4.52, P= Sustainability: The model is sustainable as it focuses on care in the home supporting the expansion of an integrated care team working across primary and secondary care. Transferability: As it focuses on integration of care including risk stratification, timely service mobilisation and monitoring the model is transferable to areas such as palliative care, disabilities and mental health Conclusion: The CVW offers solution to integrated care for older persons with complex care needs in supporting patients at home during critical periods of illness and functional decline.

A Relational Ethics Framework for Advancing Practice with Children with Complex Health Care Needs and Their Parents

ABSTRACTChildren with complex health care needs are an emerging population that commonly requires long-term supportive services. A growing body of evidence has highlighted that these children and their families experience significant challenges. Many of these challenges involve ethical concerns that have been under-recognized. In this article, we (a) outline ethical concerns that arise in clinical practice with children with complex health care needs and their families (e.g.: exclusion of children’s voices in discussions and decisions that affect them; difficulties in defining their best interests; clashes across the array of social roles that parents manage; limited recognition of the ethical significance of parents’ and other family members’ interests) and (b) propose a relational ethics framework for addressing these concerns. Our framework draws on hermeneutical interpretation and moral experience as foundational orientations, recognizing children with complex health care needs as relationally embedded agents, who while dependent and entitled to protection, are simultaneously agential. Children’s and parents’ interests are relationally intertwined and interdependent. Families are recognized as significant social microcosms for the cultivation and transmission of intergenerational cultural heritage, narratives, and outlooks. We describe strategies for (a) conducting a relational ethics inquiry and (b) reconciliation of identified ethical concerns through a process of rapprochement. A relational ethics framework can promote clinical practices that are ethically attuned to the complexity of this population’s needs.

Parenting a Child With Complex Health Care Needs: A Stressful and Imposed “Clinical Career”

Providing care for technologically dependent children with complex health care needs is a highly skilled activity, particularly for children who are reliant on high levels of respiratory support an...

Parent-Driven Campaign Videos: An Analysis of the Motivation and Affect of Videos Created by Parents of Children With Complex Healthcare Needs

ABSTRACTCaring for a child with complex health care needs places additional stress and time demands on parents. Parents often turn to their peers to share their experiences, gain support, and lobby for change; increasingly this is done through social media. The WellChild #notanurse_but is a parent-driven campaign that states its aim is to “shine a light” on the care parents, who are not nurses, have to undertake for their child with complex health care needs and to raise decision-makers’ awareness of the gaps in service provision and support. This article reports on a study that analyzed the #notanurse_but parent-driven campaign videos. The purpose of the study was to consider the videos in terms of the range, content, context, perspectivity (motivation), and affect (sense of being there) in order to inform the future direction of the campaign. Analysis involved repeated viewing of a subset of 30 purposively selected videos and documenting our analysis on a specifically designed data extraction sheet. Each video was analyzed by a minimum of 2 researchers. All but 2 of the 30 videos were filmed inside the home. A variety of filming techniques were used. Mothers were the main narrators in all but 1 set of videos. The sense of perspectivity was clearly linked to the campaign with the narration pressing home the reality, complexity, and need for vigilance in caring for a child with complex health care needs. Different clinical tasks and routines undertaken as part of the child’s care were depicted. Videos also reported on a sense of feeling different than “normal families”; the affect varied among the researchers, ranging from strong to weaker emotional responses.

Implementing a Veteran-Centered Community Health Clinical Experience in a Baccalaureate Nursing Program.

In a baccalaureate nursing curriculum, students focused on the unique health care needs of veterans and their families. The learning experiences aimed to equip them with the knowledge, skills, and attitudes (KSAs) to provide holistic relation-centered care to veterans and their families. The clinical course integrated the findings of several veteran-centered publications and the American Association of Colleges of Nursing veteran-centered resources. Formative and summative anecdotal information was gathered in the learning experience during weekly postclinical discussions, course assignments, and a seminar after completion of the experience. Three noteworthy themes stand out: Increased Descriptions of Resources and Services Available to Veterans and Their Families, Increased Expressions of the Complex Health Care Needs of Veterans, and Increasing Recognition of the Autonomous Nature of the Community Health Nursing Role. Early indicators are that this community health field work experience will be sustainable into the future. The academic institution and clinical partner remain committed to working together to provide meaningful learning opportunities to students. Students completed the experience with increased KSAs and a beginning orientation to the Veterans Affairs Health Care System. [J Nurs Educ. 2017;56(3):186-190.].

Navigating Bureaucracy: Accompanying Indigenous Maya Patients with Complex Health Care Needs in Guatemala

Indigenous populations worldwide endure disparities in access to biomedical health care. This article suggests that institutional bureaucracy is an important and underexamined barrier to health care for indigenous Maya people in Guatemala. Based on interviews, participant observation, and seven years of experience with a non-governmental organization's patient advocacy program, we examine how biomedical institutions' administrative systems impede indigenous patients' abilities to obtain specialty medical treatments. Particularly, we examine the roles that street-level bureaucrats such as security guards and nurses play in restricting access to health care as well as how bureaucratic adherence to procedure can override clinical concerns in ways that actively harm patient health. We also highlight how indigenous Maya patients with limited Spanish language abilities and low literacy tend not to have the cultural capital to successfully navigate hospital environments. As such, bureaucracy in biomedical instit...