scholarly journals Providing person-centered care for patients with complex healthcare needs: A qualitative study

PLoS ONE ◽  
2020 ◽  
Vol 15 (11) ◽  
pp. e0242418
Author(s):  
Vincent J. T. Peters ◽  
Bert R. Meijboom ◽  
Jan Erik H. Bunt ◽  
Levinus A. Bok ◽  
Marianne W. van Steenbergen ◽  
...  
Keyword(s):  
Functional Outcomes ◽  
Chronic Conditions ◽  
Healthcare Professionals ◽  
Healthcare Services ◽  
Structured Interviews ◽  
Healthcare Provision ◽  
Service Architecture ◽  
Children With Down Syndrome ◽  
Healthcare Needs ◽  
Centered Care

Background People with chronic conditions have complex healthcare needs that lead to challenges for adequate healthcare provision. Current healthcare services do not always respond adequately to their needs. A modular perspective, in particular providing visualization of the modular service architecture, is promising for improving the responsiveness of healthcare services to the complex healthcare needs of people with chronic conditions. The modular service architecture provides a comprehensive representation of the components and modules of healthcare provision. In this study, we explore this further in a qualitative multiple case study on healthcare provision for children with Down syndrome in the Netherlands. Methods Data collection for four cases involved 53 semi-structured interviews with healthcare professionals and 21 semi-structured interviews with patients (the parents of children with Down syndrome as proxy). In addition, we gathered data by means of practice observations and analysis of relevant documents. The interviews were audio-recorded, transcribed verbatim and analyzed utilizing the Miles and Huberman approach. Results Our study shows that the perspectives on healthcare provision of professionals and patients differ substantially. The visualization of the modular service architecture that was based on the healthcare professionals’ perspective provided a complete representation of (para)medical outcomes relevant to the professionals’ own discipline. In contrast, the modular service architecture based on the patients’ perspective, which we define as a person-centered modular service architecture, provided a representation of the healthcare service that was primarily based on functional outcomes and the overall wellbeing of the patients. Conclusion Our study shows that visualization of the modular service architecture can be a useful tool to better address the complex needs and requirements of people with a chronic condition. We suggest that a person-centered modular service architecture that focuses on functional outcomes and overall wellbeing, enables increased responsiveness of healthcare services to people with complex healthcare needs and provision of truly person-centered care.

scholarly journals Remote primary care consultations for people living with dementia during the COVID-19 pandemic: experiences of people living with dementia and their carers

2021 ◽  
pp. BJGP.2020.1094 ◽  
Author(s):  
Remco Tuijt ◽  
Greta Rait ◽  
Rachael Frost ◽  
Jane Wilcock ◽  
Jill Manthorpe ◽  
...  
Keyword(s):  
Primary Care ◽  
Best Practice ◽  
Qualitative Interviews ◽  
Healthcare Services ◽  
Structured Interviews ◽  
Healthcare Provision ◽  
Healthcare Settings ◽  
Healthcare Needs ◽  
Remote Healthcare ◽  
Remote Consultations

Background: COVID-19 has accelerated remote healthcare provision in primary care, with changes potentially permanent. The implementation of remote provision of healthcare needs to hear from vulnerable populations, such as people living with dementia. Aim: To understand the remote healthcare experiences of patients living with dementia and their family carers during the COVID-19 pandemic. Design and setting: Qualitative interviews with community-based patients living with dementia and their carers during early months (May-August 2020) of the COVID-19 pandemic in England. Methods: Semi-structured interviews were conducted remotely by telephone or video call with 30 patients living with dementia and 31 carers. Data were analysed using thematic analysis. Results: Three main themes were derived relating to: 1) proactive care at the onset of COVID-19 restrictions, 2) avoidance of healthcare settings and services, and 3) difficulties with remote healthcare encounters. People living with dementia and their carers felt check-up calls were reassuring but limited in scope and content. Some avoided healthcare services, wishing to minimise COVID-19 risk, reduce NHS burden, or encountering technological barriers. Difficulties in remote consultations included lack of prompts to remember problems, dealing with new emerging problems, rescheduling/missed calls, and inclusion of the person with dementia’s voice. Conclusion: While remote consultations could be effective, pro-active calls could be more structured around needs, and consideration should be given to replace non-verbal prompts to describe problems, particularly for new health concerns. In continuing remote consultations, it is important to facilitate engagement with patients living with dementia and their carers to ensure best practice.

Providing Patient Centered Care for Adolescents with Chronic Conditions

2016 ◽  
Vol 6 (1) ◽  
pp. 22-29
Author(s):  
Nabeel Al-Yateem
Keyword(s):  
Young Adults ◽  
Healthcare Professionals ◽  
Transition Process ◽  
Healthcare Services ◽  
Adolescents And Young Adults ◽  
Study Phase ◽  
Patient Centered ◽  
Centered Care ◽  
Group Interviews ◽  
Depth Interviews

Background: It is well acknowledged that clear, structured healthcare services that are mutually developed between the patient and the healthcare professionals are likely to be of high quality, desirable, and effective. Such service should address the complexity of the illness-health experience in terms of the factors that influence it as well as the physical and psychosocial consequences on the patient. The required focus should be on treating the patient rather than just treating the disease.Objectives: To develop relevant and feasible care guidelines that may inform more competent and patient centered services for adolescents and young adults with chronic conditions.Methodology: A sequential exploratory mixed method design guided this study. The first qualitative phase employed in-depth interviews to explore the experiences of adolescents and young adults about the health services they were receiving. This was followed by focus group interviews with healthcare professionals to discuss the patients’ reported needs and to suggest interventions that would address them. Finally, a second quantitative phase was carried out through a survey to explore the views of a larger sample of service stakeholders about the relevance and feasibility of the suggested guidelines for clinical practice.Results: The in-depth interviews revealed four main themes, as follows: a current amorphous service, sharing knowledge, the need to be at the center of service, and easing the transition process to adulthood. The second study phase yielded 32 proposed guidelines that may contribute to more competent and patient centered health care.

Business Ethics and the Greek Healthcare System

2018 ◽  
pp. 100-127 ◽  
Author(s):  
Vaitsa Giannouli
Keyword(s):  
Business Ethics ◽  
Healthcare System ◽  
Healthcare Professionals ◽  
Maslach Burnout Inventory ◽  
Healthcare Services ◽  
Ethical Values ◽  
Structured Interviews ◽  
Future Directions ◽  
Emotional Aspects ◽  
Job Affect

This chapter provides a review not only of classic literature on healthcare business and ethics, but also an introduction to the legal changes in the Greek healthcare system with ethical values on focus. A study examining in both a quantitative and qualitative way what the Greek healthcare experts think and feel about ethics and healthcare services presents the factors that shape attitudes towards ethical values from the viewpoint of the healthcare professionals. For this reason, 34 semi-structured interviews, accompanied by the administration of perceived cohesion scale, generalized immediacy scale, job affect scale, state anxiety inventory, Maslach burnout inventory, and the attitude towards business ethics questionnaire revealed that healthcare professionals do have knowledge of ethical values and moral responsibility, but no clear connections with specific emotional aspects were found. The chapter concludes with future directions on how business ethics can be further examined and applied.

scholarly journals Digital tools as promoters for person-centered care practices in chronic care? Healthcare professionals’ experiences from rheumatology care

2020 ◽  
Vol 20 (1) ◽  
Author(s):  
Emma Granström ◽  
Carolina Wannheden ◽  
Mats Brommels ◽  
Helena Hvitfeldt ◽  
Monica E. Nyström
Keyword(s):  
Chronic Care ◽  
Healthcare Professionals ◽  
Single Case ◽  
Digital Tools ◽  
Work Practices ◽  
Structured Interviews ◽  
Person Centered Care ◽  
Centered Care ◽  
Care Practices ◽  
Perceived Impact

Abstract Background Person-centered care (PCC) emphasize the importance of supporting individuals’ involvement in care provided and self-care. PCC has become more important in chronic care as the number of people living with chronic conditions is increasing due to the demographic changes. Digital tools have potential to support interaction between patients and healthcare providers, but empirical examples of how to achieve PCC in chronic care and the role of digital tools in this process is limited. The aim of this study was to investigate strategies to achieve PCC used by the healthcare professionals at an outpatient Rheumatology clinic (RC), the strategies’ relation to digital tools, and the perceived impact of the strategies on healthcare professionals and patients. Methods A single case study design was used. The qualitative data consisted of 14 semi-structured interviews and staff meeting minutes, covering the time period 2017–2019. The data were analyzed using conventional content analysis, complemented with document analyses. Results Ten strategies on two levels to operationalize PCC, and three categories of perceived impact were identified. On the individual patient level strategies involved several digital tools focusing on flexible access to care, mutual information sharing and the distribution of initiatives, tasks, and responsibilities from provider to patients. On the unit level, strategies concerned involving patient representatives and individual patients in development of digital services and work practices. The roles of both professionals and patients were affected and the importance of behavioral and cultural change became clear. Conclusions By providing an empirical example from chronic care the study contributes to the knowledge on strategies for achieving PCC, how digital tools and work practices interact, and how they can affect healthcare staff, patients and the unit. A conclusion is that the use of the digital tools, spanning over different dimensions of engagement, facilitated the healthcare professionals’ interaction with patients and the patients’ involvement in their own care. Digital tools complemented, rather than replaced, care practices.

scholarly journals Examining Stakeholder’s Views On Refugee Healthcare Needs, Current Barriers in Accessing Healthcare Services and Future Healthcare Direction in New Zealand: A Qualitative Phenomenological Approach

2021 ◽  
Author(s):  
Bafreen Sherif ◽  
Ahmed Awaisu ◽  
Nadir Kheir
Keyword(s):  
New Zealand ◽  
Health Services ◽  
Qualitative Methodology ◽  
Healthcare Delivery ◽  
Healthcare Providers ◽  
Healthcare Services ◽  
Healthcare Personnel ◽  
Structured Interviews ◽  
Health Seeking ◽  
Healthcare Needs

Abstract Background The annual New Zealand refugee quota was increased to 1500 places from 2020 onwards as a response to the global refugee crisis. The specific healthcare needs of refugees are not clearly understood globally and communication between healthcare providers and refugees remains poor. Methods A phenomenological qualitative methodology was employed to conduct semi-structured interviews among purposively selected stakeholders who work in refugee organisations and relevant bodies in New Zealand. Results The participants indicated the need for a national framework of inclusion, mandating cultural competency training for frontline healthcare and non-healthcare personnel, creation of a national interpretation phone line, and establishing health navigators. Barriers to accessing health services identified included some social determinants of health such as housing and community environment; health-seeking behaviour and health literacy; and social support networks. Future healthcare delivery should focus on capacity building of existing services, including co-design processes, increased funding for refugee-specific health services, and whole government approach. Conclusion Policymakers and refugee organisations and their frontline personnel should seek to address the deficiencies identified in order to provide equitable, timely and cost-effective healthcare services for refugees in New Zealand.

scholarly journals The impact of the Affordable Care Act on patient coverage and access to care: perspectives from FQHC administrators in Arizona, California and Texas

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Angelo Ercia
Keyword(s):  
Access To Care ◽  
Affordable Care Act ◽  
Health Care Services ◽  
Healthcare Services ◽  
Structured Interviews ◽  
Care Services ◽  
Healthcare Needs ◽  
The Affordable Care Act ◽  
Insured Patients ◽  
The Impact

Abstract Background The Affordable Care Act (ACA) enabled millions of people to gain coverage that was expected to improve access to healthcare services. However, it is unclear the extent of the policy’s impact on Federally Qualified Health Centers (FQHC) and the patients they served. This study sought to understand FQHC administrators’ views on the ACA’s impact on their patient population and organization. It specifically explores FQHC administrators’ perspective on 1) patients’ experience with gaining coverage 2) their ability to meet patients’ healthcare needs. Methods Twenty-two semi-structured interviews were conducted with administrators from FQHCs in urban counties in 2 Medicaid-expanded states (Arizona and California) and 1 non-expanded state (Texas). An inductive thematic analysis approach was used to analyze the interview data. Results All FQHC administrators reported uninsured patients were more likely to gain coverage from Medicaid than from private health insurance. Insured patients generally experienced an improvement in accessing healthcare services but depended on their plan’s covered services, FQHCs’ capacity to meet demand, and specialist providers’ willingness to accept their coverage type. Conclusion Gaining coverage helped improved newly insured patients’ access to care, but limitations remained. Additional policies are required to better address the gaps in the depth of covered services in Medicaid and the most affordable PHI plans and capacity of providers to meet demand to ensure beneficiaries can fully access the health care services they need.

Business Ethics in Healthcare

2020 ◽  
pp. 138-167
Author(s):  
Vaitsa Giannouli
Keyword(s):  
Business Ethics ◽  
Moral Responsibility ◽  
Healthcare Professionals ◽  
Maslach Burnout Inventory ◽  
Healthcare Services ◽  
Ethical Values ◽  
Structured Interviews ◽  
Future Directions ◽  
Emotional Aspects ◽  
Job Affect

Over the last few decades, healthcare business and ethical values have been the focus of legal changes, especially in the Greek Healthcare System. The purpose of this chapter was to examine in both a quantitative and qualitative way what the Greek healthcare experts think and feel about ethics and healthcare services and to present the factors that shape attitudes towards ethical values from the viewpoint of the healthcare professionals. For this reason, 34 semi-structured interviews, accompanied by the administration of perceived cohesion scale, generalized immediacy scale, job affect scale, state anxiety inventory, Maslach burnout inventory, and the attitude towards business ethics questionnaire revealed that healthcare professionals in Greece do have knowledge of ethical values and moral responsibility, but no connections with specific emotional aspects were found. The chapter concludes with a discussion of the implications, and future directions on how business ethics can be further examined and applied.

Government reports versus offenders’ experiences: toward the resolution of discrepancies in healthcare and healthcare delivery

2015 ◽  
Vol 11 (4) ◽  
pp. 225-242 ◽  
Author(s):  
Pegah Memarpour ◽  
Rose Ricciardelli ◽  
Pauline Maasarjian
Keyword(s):  
Mental Health ◽  
Prison Population ◽  
Healthcare Delivery ◽  
Healthcare Services ◽  
Physical And Mental Health ◽  
Healthcare Provision ◽  
Content Type ◽  
Former Prisoners ◽  
Healthcare Needs

Purpose – Canadian literature on federal correctional institutions and prison living indicate a shortage inadequate and available healthcare services to meet the needs of the prison population, despite prisoners higher rates of health challenges (e.g. mental health, addictions, HIV/AIDS) in comparison to the general population. With fewer resources, concerns arise about the delivery, quantity, and quality of penal healthcare provision. Thus, the authors examines former prisoners’ experiences of, in comparison to government reports on, wait-times, and request processes for healthcare services, as well as issues of access, quality of interactions with healthcare professionals and the regulations and policies governing healthcare provision. The paper aims to discuss these issues. Design/methodology/approach – The authors compare data gathered from interviews with 56 former-federal prisoners with publicly available Correctional Services Canada reports on healthcare delivery, staff-prisoner interactions, programmes and services, and overall physical and mental health to identify consistencies and inconsistencies between the government’s and former prisoners’ understandings of penal healthcare. Findings – Discrepancies exist between prisoners reported experiences of healthcare provision and government reports. Prisoners are dissatisfied with healthcare provision in more secure facilities or when they feel their healthcare needs are not met yet become more satisfied in less secure institutions or when their needs are eventually met. Originality/value – Theories of administrative control frame the analyses, including discrepancies between parolee experiences and Correctional Service Canada reports. Policy recommendations to improve healthcare provision are highlighted.

scholarly journals Navigating the U.S. health insurance landscape for children with rare diseases: a qualitative study of parents’ experiences

2021 ◽  
Vol 16 (1) ◽  
Author(s):  
Tai L. S. Pasquini ◽  
Sarah L. Goff ◽  
Jennifer M. Whitehill
Keyword(s):  
Health Insurance ◽  
Rare Diseases ◽  
Muscular Atrophy ◽  
Healthcare Services ◽  
Healthcare Team ◽  
Drug Status ◽  
Structured Interviews ◽  
Eligibility Criteria ◽  
Health Insurance Status ◽  
Healthcare Needs

Abstract Background Parents of children with rare diseases often face uncertainty about diagnosis, treatment, and costs associated with healthcare for their child. Health insurance status impacts each of these areas, but no U.S. study has explored parents’ perceptions of the health insurance impacts on their child’s care. This study aimed to qualitatively explore how these parents navigate the complex health insurance system for their children and their experiences in doing so. Methods Semi-structured interviews were conducted with parents of children with metachromatic leukodystrophy (MLD) and spinal muscular atrophy (SMA), chosen for specific disease characteristics and orphan drug status. Participants were recruited via e-mail through patient advocacy organizations between September and December 2018. Interviews were conducted via Skype, were recorded, and professionally transcribed. Modified grounded theory was utilized as a methodology to analyze transcripts in an iterative process to determine themes and sub-themes based on participant described experiences. Results Major themes and subthemes that emerged across the 15 interviews included: (1) difficulties obtaining secondary insurance based on state eligibility criteria; (2) difficulty accessing needed healthcare services; and (3) need for repeated interactions with insurance representatives. The absence of clearly documented or widely recognized clinical guidelines exacerbated the difficulty accessing care identified as necessary by their healthcare team, such as therapy and equipment. An explanatory model for parent’s experiences was developed from the themes and subthemes. The model includes the cyclical nature of interacting with insurance for redundant reauthorizations and the outside support and financial assistance that is often necessary to address their child’s healthcare needs. Conclusions With complex health conditions, small setbacks can become costly and disruptive to the health of the child and the life of the family. This study suggests that patients with rare diseases may benefit from time limits for processing coverage decisions, increasing transparency in the claims and preauthorization processes, and more expansive authorizations for on-going needs. Additional studies are needed to understand the full scope of barriers and to inform policies that can facilitate better access for families living with rare diseases.

scholarly journals Dignity of informal caregivers of migrant patients in the last phase of life. A qualitative study.

2020 ◽  
Author(s):  
Xanthe de Voogd ◽  
Dick Willems ◽  
Marieke Torensma ◽  
Bregje Onwuteaka-Philipsen ◽  
Jeanine Suurmond
Keyword(s):  
Quality Of Life ◽  
Healthcare Professionals ◽  
Informal Caregiver ◽  
Informal Caregivers ◽  
Good Care ◽  
Structured Interviews ◽  
Value Differences ◽  
Centered Care ◽  
Family Centered

Abstract Background An important aim of palliative care is to improve the family’s and patient’s quality of life. To ensure quality of life for migrant patients’ families, the objective of this study was to get insight into the dignity of informal caregivers. This could provide insight on family-centered care for migrant patients. Methods 20 semi-structured interviews with informal caregivers with a Turkish, Moroccan or Surinamese migration background living in the Netherlands were analyzed thematically. Results We found the dignity of the patient and the dignity of the informal caregiver were strongly related. Most important for the dignity of the informal caregiver was to ensure good care for and preserve the dignity of the patient. Ensuring good care encompassed advocating for good and dignified care and wishes of the patient. For many caregivers, it also included delivering care to the patient themselves or with other family members, despite having to give up a part of their own lives. Giving care themselves was part of maintaining a good relationship, it could cater to the patient’s preferences or preserve the patient’s dignity, and it could come with valuable aspects such as times for good conversations. The informal caregiver’s dignity and the patient’s dignity were often compromised simultaneously. When informal caregivers felt healthcare professionals were impairing the dignity of the patient, their own dignity suffered. Also, dignified behavior by the patient such as thankfulness influenced the informal caregiver’s dignity positively, undignified behavior of the informal caregiver themselves, such as showing their emotions to significant others could influence it negatively. According to informal caregivers, healthcare professionals can help them preserve their dignity by taking their advice about the patient seriously, informing them about the disease and the patient’s prognosis, and dealing respectfully with value differences at the end of life. Conclusion The dignity of migrant patients’ informal caregivers in the last phase of the patient’s life is entwined with ensuring good care for and dignity of the patient. Healthcare professionals could strengthen the informal caregiver’s dignity by supporting their role.

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