scholarly journals Developing a taxonomy of care coordination for people living with rare conditions: A qualitative study

2021 ◽  
Author(s):  
Holly Walton ◽  
Amy Simpson ◽  
Angus Ramsay ◽  
Emma Hudson ◽  
Amy Hunter ◽  
...  
Keyword(s):  
Focus Groups ◽  
Care Coordination ◽  
Health Care Professionals ◽  
Administrative Support ◽  
Models Of Care ◽  
Face To Face ◽  
Roles And Responsibilities ◽  
The United Kingdom ◽  
New Models ◽  
Taxonomy Development

Background: Improving care coordination is particularly important for individuals with rare conditions (who may experience multiple inputs into their care, across different providers and settings). To develop and evaluate strategies to potentially improve care coordination, it is necessary to develop a method for organising different ways of coordinating care for rare conditions. Developing a taxonomy would help to describe different ways of coordinating care and in turn facilitate development and evaluation of pre-existing and new models of care coordination for rare conditions. To the authors' knowledge, no studies have previously developed taxonomies of care coordination for rare conditions. This research aimed to develop and refine a care coordination taxonomy for people with rare conditions. Methods: This study had a qualitative design and was conducted in the United Kingdom. To develop a taxonomy, six stages of taxonomy development were followed. We conducted interviews (n=30 health care professionals/charity representatives/commissioners) and focus groups (n=4 focus groups, 22 patients/carers with rare/ultra-rare/undiagnosed conditions). Interviews and focus groups were audio-recorded with consent, and professionally transcribed. Findings were analysed using thematic analysis. Themes were used to develop a taxonomy, and to identify which types of coordination may work best in which situations. To refine the taxonomy, we conducted two workshops (n=12 patients and carers group; n=15 professional stakeholder group). Results: Our taxonomy has six domains, each with different options. The six domains are: 1) Ways of organising care (local, hybrid, national), 2) Ways of organising professionals involved in care (collaboration between many or all professionals, collaboration between some professionals, a lack of collaborative approach), 3) Responsibility for coordination (administrative support, formal roles and responsibilities, supportive roles and no responsibility), 4) How often appointments and coordination take place (regular, on demand, hybrid), 5) Access to records (full or filtered access), and 6) Mode of care coordination (face-to-face, digital, telephone). Conclusions: Findings indicate that there are different ways of coordinating care across the six domains outlined in our taxonomy. This may help to facilitate the development and evaluation of existing and new models of care coordination for people living with rare conditions.

scholarly journals STEER: Factors to Consider When Designing Online Focus Groups Using Audiovisual Technology in Health Research

2019 ◽  
Vol 18 ◽  
pp. 160940691988578 ◽  
Author(s):  
Nicola Daniels ◽  
Patricia Gillen ◽  
Karen Casson ◽  
Iseult Wilson
Keyword(s):  
Data Collection ◽  
Focus Groups ◽  
Mixed Methods Study ◽  
Face To Face ◽  
Geographically Dispersed ◽  
The United Kingdom ◽  
Online Focus Groups ◽  
Health Care Practitioners ◽  
Academic Researchers ◽  
Journal Entries

Technological advancements and ease of Internet accessibility have made using Internet-based audiovisual software a viable option for researchers conducting focus groups. Online platforms overcome any geographical limitations placed on sampling by the location of potential participants and so enhance opportunities for real-time discussions and data collection in groups that otherwise might not be feasible. Although researchers have been adopting Internet-based options for some time, empirical evaluations and published examples of focus groups conducted using audiovisual technology are sparse. It therefore cannot yet be established whether conducting focus groups in this way can truly mirror face-to-face discussions in achieving the authentic interaction to generate data. We use our experiences to add to the developing body of literature by analyzing our critical reflections on how procedural aspects had the potential to influence the data we collected using audiovisual technology to conduct synchronous focus groups. As part of a mixed methods study, we chose to conduct focus groups in this way to access geographically dispersed populations and to enhance sample variation. We conducted eight online focus groups using audiovisual technology with both academic researchers and health-care practitioners across the four regions of the United Kingdom. A reflexive journal was completed throughout the planning, conduct and analysis of the focus groups. Content analysis of journal entries was carried out to identify procedural factors that had the potential to affect the data collected during this study. Five themes were identified ( Stability of group numbers, Technology, Environment, Evaluation, and Recruitment), incorporating several categories of issues for consideration. Combined with the reflections of the researcher and published experiences of others, suggested actions to minimize any potential impacts of issues which could affect interactions are presented to assist others who are contemplating this method of data collection.

scholarly journals Development of models of care coordination for rare conditions: A qualitative study

2021 ◽  
Author(s):  
Holly Walton ◽  
Amy Simpson ◽  
Angus IG Ramsay ◽  
Amy Hunter ◽  
Jennifer Jones ◽  
...  
Keyword(s):  
Care Coordination ◽  
Healthcare Professionals ◽  
Models Of Care ◽  
Roles And Responsibilities ◽  
Societal Factors ◽  
Healthcare Environment ◽  
Patient Organisations ◽  
Key Stakeholders ◽  
Different Types ◽  
The Individual

Introduction: Improving care coordination for people with rare conditions may help to reduce burden on patients and carers and improve the care that patients receive. We recently developed a taxonomy of different ways of coordinating care for rare conditions. It is not yet known which models of care coordination are appropriate in different situations. This study aimed to: i) explore what types of care coordination may be appropriate in different situations, and ii) use these findings to develop hypothetical models of care coordination for rare conditions. Methods: To explore appropriateness of different types of care coordination, we conducted interviews (n=30), four focus groups (n=22) and two workshops (n=27) with patients, carers, healthcare professionals, commissioners, and charity representatives. Participants were asked about preferences, benefits and challenges, and the factors influencing coordination. Thematic analysis was used to develop hypothetical models of care coordination. Models were refined following feedback from workshop participants. Results: Stakeholders prefer models of care that: are nationally centralised or a hybrid of national and local care, involve professionals collaborating to deliver care, have clear roles and responsibilities outlined (including administrative, coordinator, clinical and charity roles), provide access to records and offer flexible appointments (in terms of timing and mode). Many factors influenced coordination, including those relating to the patient (e.g., condition complexity, patient's location and ability to coordinate their own care), the healthcare professional (e.g., knowledge and time), the healthcare environment (e.g., resources) and societal factors (e.g., availability of funding). We developed and refined ten illustrative hypothetical models of care coordination for rare conditions. Conclusion: Findings underline that different models of care coordination may be appropriate in different situations. It is possible to develop models of care coordination which are tailored to the individual in context. Findings may be used to facilitate planning around which models of care coordination may be appropriate in different services or circumstances. Findings may also be used by key stakeholders (e.g. patient organisations, clinicians and service planners) as a decision-making tool.

scholarly journals How Women Use Digital Technologies for Health: Qualitative Interview and Focus Group Study (Preprint)

2018 ◽  
Author(s):  
Deborah Lupton ◽  
Sarah Maslen
Keyword(s):  
Health Care ◽  
Focus Groups ◽  
Health Care Professionals ◽  
Online Social Networks ◽  
Digital Health ◽  
Family Members ◽  
Digital Technologies ◽  
Face To Face ◽  
Health Technologies ◽  
Health Related

BACKGROUND A range of digital technologies are available to lay people to find, share, and generate health-related information. Few studies have directed attention specifically to how women are using these technologies from the diverse array available to them. Even fewer have focused on Australian women’s use of digital health. OBJECTIVE The Australian Women and Digital Health Project aimed to investigate which types of digital technologies women used regularly for health-related purposes and which they found most helpful and useful. Qualitative methods—semistructured interviews and focus groups—were employed to shed light on the situated complexities of the participants’ enactments of digital health technologies. The project adopted a feminist new materialism theoretical perspective, focusing on the affordances, relational connections, and affective forces that came together to open up or close off the agential capacities generated with and through these enactments. METHODS The project comprised two separate studies including a total of 66 women. In study 1, 36 women living in the city of Canberra took part in face-to-face interviews and focus groups, while study 2 involved telephone interviews with 30 women from other areas of Australia. RESULTS The affordances of search engines to locate health information and websites and social media platforms for providing information and peer support were highly used and valued. Affective forces such as the desire for trust, motivation, empowerment, reassurance, control, care, and connection emerged in the participants’ accounts. Agential capacities generated with and through digital health technologies included the capacity to seek and generate information and create a better sense of knowledge and expertise about bodies, illness, and health care, including the women’s own bodies and health, that of their families and friends, and that of their often anonymous online social networks. The participants referred time and again to appreciating the feelings of agency and control that using digital health technologies afforded them. When the technologies failed to work as expected, these agential capacities were not realized. Women responded with feelings of frustration, disappointment, and annoyance, leading them to become disenchanted with the possibilities of the digital technologies they had tried. CONCLUSIONS The findings demonstrate the nuanced and complex ways in which the participants were engaging with and contributing to online sources of information and using these sources together with face-to-face encounters with doctors and other health care professionals and friends and family members. They highlight the lay forms of expertise that the women had developed in finding, assessing, and creating health knowledges. The study also emphasized the key role that many women play in providing advice and health care for family members not only as digitally engaged patients but also as digitally engaged carers.

scholarly journals A complex intervention for multimorbidity in primary care: A feasibility study

2020 ◽  
Vol 10 ◽  
pp. 2235042X2093531
Author(s):  
Hanne Birke ◽  
Ramune Jacobsen ◽  
Alexandra BR Jønsson ◽  
Ann Dorrit Kristiane Guassora ◽  
Marie Walther ◽  
...  
Keyword(s):  
Cardiovascular Disease ◽  
Health Care ◽  
General Practice ◽  
Focus Groups ◽  
Complex Intervention ◽  
Care Coordination ◽  
Health Care Professionals ◽  
Care Plan ◽  
Patient Centered ◽  
Structured Care

Aim: To assess the feasibility of a patient-centered complex intervention for multimorbidity (CIM) based on general practice in collaboration with community health-care centers and outpatient clinics. Methods: Inclusion criteria were age ≥18 years, diagnoses of two or more of three chronic conditions (diabetes, chronic obstructive pulmonary disease (COPD), and chronic heart conditions), and a hospital contact during the previous year. The CIM included extended consultations and nurse care manager support in general practice and intensified cross-sectorial collaboration. Elements included a structured care plan based on patients’ care goals, coordination of services, and, if appropriate, shifting outpatient clinic visits to general practice, medication review, referral to rehabilitation, and home care. The acceptability dimension of feasibility was assessed with validated questionnaires, observations, and focus groups. Results: Forty-eight patients were included (mean age 72.2 (standard deviation (SD) 9.5, range 52–89); 23 (48%) were men. Thirty-seven patients had two diseases; most commonly COPD and cardiovascular disease (46%), followed by diabetes and cardiovascular disease (23%), and COPD and diabetes (15%). Eleven (23%) patients had all three conditions. Focus group interviews with patients with multimorbidity identified three main themes: (1) lack of care coordination existed across health-care sectors before the CIM, (2) extended consultations provided better care coordination, and (3) patients want to be involved in planning their treatment and care. In focus groups, health-care professionals discussed two main themes: (1) patient-centered care and (2) culture and organizational change. Completion rates for questionnaires were 98% (47/48). Conclusions: Patients and health-care professionals found the CIM acceptable.

Developing and evaluating new models of care in hematology.

2017 ◽  
Vol 35 (8_suppl) ◽  
pp. 53-53
Author(s):  
Tom Kouroukis ◽  
Jenna Ratcliffe ◽  
Karen Running ◽  
Jonathan Sussman
Keyword(s):  
Primary Care ◽  
Focus Groups ◽  
Cancer Care ◽  
Models Of Care ◽  
Care Plan ◽  
Care Plans ◽  
Edmonton Symptom Assessment Scale ◽  
New Models ◽  
Care Models

53 Background: The duration of care for patients with hematological malignancies (HM) from diagnosis to discharge can often be five years or longer, during which patients frequently visit their hematologist but may not maintain contact with their primary care physician (PCP). This can result in gaps in the care of non cancer health problems. A number of studies in solid tumors have highlighted the benefits of maintaining contact with the PCP however there has been little published on survivorship care in HM. Objective. Develop and evaluate models of care in hematology that facilitate transition to the PCP where appropriate. Methods: This study used a stepwise approach to inform the development and evaluation of care models. Models were developed using: a literature review; expert opinion; input from patient and PCP focus groups. The survivorship model (SM) was evaluated in a longitudinal, cohort of patients using validated patient surveys: Coordination of Cancer Care Questionnaire; Edmonton Symptom Assessment Scale; EQ5D-QoL. Results: Focus groups were conducted with 26 participants. Patients indicated they would be willing to engage with their PCP if primary care were more confident in their cancer care abilities, and if communication improved between specialty and PCP. PCPs felt care plans should be clear, concise and within their scope. Three new models of care were developed based on level of care need (survivorship, shared, engagement). The SM has been tested with 50 patients who have completed treatment and follow up. Survey results indicated the majority of SM patients: continued to feel well; reported high functioning; had seen their PCP since discharge; were satisfied with the coordination of their care. Fifteen PCPs responded to a follow up survey. PCPs were: satisfied with the SM care plan and aware of the repatriation process to specialty care, if needed. Conclusions: Patient involvement in model design was instrumental in the success of the project. PCPs reported that the tools developed in this pilot enhanced the care experience and provider collaboration. These findings warrant further testing of care models in a comparative study with this complex cancer population.

İngiltere’den Türkiye’ye ‘Düzensiz’ Göçmen Dövizi Gönderme Davranışının Nedenleri Üzerine Nitel Bir İnceleme

2019 ◽  
Vol 6 (2) ◽  
pp. 173-190
Author(s):  
Fethiye Tilbe
Keyword(s):  
Cultural Values ◽  
Host Country ◽  
Regulatory Framework ◽  
Face To Face ◽  
Migrant Communities ◽  
The United Kingdom ◽  
Main Determinants ◽  
Money Transfers ◽  
The Uk ◽  
Migrant Groups

Bu makale, göçmen dövizi  akımlarında “düzensizlik” olarak ifade ettiğimiz, Türkiye’ye resmi kanallar dışında gönderilen enformel  göçmen dövizlerini, Birleşik Krallık’ta (özellikle Londra’da) yaşayan Türkiye kökenli göçmenler açısından incelemektedir. Her göçmen grubu, gerek ev sahibi ülkedeki düzenleyici çerçeve ve sosyo-ekonomik koşullar, gerek göçmen topluluğunun sosyo-kültürel değerleri tarafından belirlenen biçimde, farklı göçmen dövizi transfer biçimlerine eğilim sergilemektedir. Dolayısıyla farklı ülkelerdeki aynı kökenden göçmen toplulukları, ev sahibi ülkedeki dinamikler nedeniyle göçmen dövizlerinin formel ya da enformel (düzenli ya da düzensiz) gönderiminde farklılaşabilirken, aynı ülkedeki farklı ülke kökenli göçmen grupları da pek çok örüntünün etkisiyle farklı eğilim gösterebilmektedir. Nitel araştırma tasarımı kapsamında 27 göçmen ve 7 anahtar statüdeki katılımcıyla gerçekleştirilen yüz yüze görüşmelere dayalı olan bu çalışma, Birleşik Krallık’tan Türkiye’ye göçmen dövizi gönderimindeki düzensizlik olgusunu, her iki ülkenin sosyal, ekonomik ve kültürel dinamikleriyle ilişkilendirerek incelemeyi ve nedenlerini ortaya çıkarmayı amaç edinmektedir. Elde edilen sonuçlar, göçmenlik statüsü, gönderilen para miktar ve sıklığı ile geleneksel ilişki ağlarına olan güvenin yanında, Birleşik Krallık’taki sosyal yardım ve çalışma biçimine ilişkinin düzenleyici çerçevenin ve göçmenlerin sosyo-ekonomik durumlarının Türkiye’ye enformel göçmen dövizi gönderiminde temel belirleyici olduğunu ortaya koymaktadır.ABSTRACT IN ENGLISHA Qualitative Examination of Determinants of Remittances Sending Behaviour Among Immigrants from Turkey in the UKThis article examines the causes of irregularity in remittances flows from the United Kingdom (UK) to Turkey, from the perspective of migrants from Turkey living in the UK. Each group of migrants prefers different types of remittance sending methods, as determined by the regulatory framework and socio-economic conditions in the host country and the socio-cultural values of the migrant community. Therefore, migrant communities of the same origin in different countries may differ in using formal or informal sending methods of remittances due to the dynamics in the host country. Similarly, migrant groups of different nationalities in the same country may show different tendencies due to the influence of many patterns. Similarly, migrant groups of different nationalities in the same country may show different tendencies due to the influence of many patterns. This study aims to examine the phenomenon of irregularities in sending remittances by associating with the social, economic and cultural dynamics of both countries. For this purpose, face-to-face in-depth interviews were conducted with 27 immigrants and 7 key status participants by using qualitative research method. The obtained results reveal that the regulatory framework relating to social assistance and labour market in the UK, immigration status, the frequency and the amount of money sent and confidence in traditional relationship networks is the main determinants of informal money transfers to Turkey.

Māori Research(er) in Three Poems

2018 ◽  
Vol 2 (1) ◽  
pp. 35
Author(s):  
Jacquie Kidd
Keyword(s):  
Palliative Care ◽  
Health Literacy ◽  
Cultural Identity ◽  
Focus Groups ◽  
Health Professionals ◽  
Bell Hooks ◽  
Face To Face ◽  
The Third ◽  
Ruth Behar ◽  
Seeking Help

These three poems re-present the findings from a research project that took place in 2013 (Kidd et al. 2018, Kidd et al. 2014). The research explored what health literacy meant for Māori patients and whānau when they accessed palliative care. Through face-to-face interviews and focus groups we engaged with 81 people including patients, whānau, bereaved loved ones, support workers and health professionals. The poems are composite, written to bring some of our themes to life. The first poem is titled Aue. This is a Māori lament that aligns to English words such as ‘oh no’, or ‘arrgh’, or ‘awww’. Each stanza of the poem re-presents some of the stories we heard throughout the research. The second poem is called Tikanga. This is a Māori concept that encompasses customs, traditions and protocols. There are tikanga rituals and processes that guide all aspects of life, death, and relationships. This poem was inspired by an elderly man who explained that he would avoid seeking help from a hospice because ‘they leave tikanga at the door at those places’. His choice was to bear his pain bravely, with pride, within his cultural identity. The third poem is called ‘People Like Me’. This is an autoethnographical reflection of what I experienced as a researcher which draws on the work of scholars such as bell hooks (1984), Laurel Richardson (1997) and Ruth Behar (1996). These and many other authors encourage researchers to use frustration and anger to inform our writing; to use our tears to fuel our need to publish our research.

Potentially Inappropriate Medications Use in A Population of Iraqi Geriatric Outpatients According to Beers Criteria

2019 ◽  
Vol 10 (02) ◽  
Author(s):  
Ola Albaghdadi ◽  
Salam , Mohammad Hassan Morteza, Firas A Ahjel ◽  
Mohammad Hassan Morteza ◽  
Firas Aziz Rahi
Keyword(s):  
Health Care ◽  
Health Care Professionals ◽  
Public Health Issue ◽  
Beers Criteria ◽  
Potentially Inappropriate Medications ◽  
Cross Sectional ◽  
Face To Face ◽  
Inappropriate Drugs ◽  
Elderly Outpatients ◽  
Inappropriate Medications

Aims: Elderly in Iraq kept suffering multiple burdens, as they are a truly fragile and vulnerable segment. A major public health issue among elderly is adverse drug reactions. This study is aimed at contributing in overcoming this treatment gap by determining the prevalence of inappropriate medications used by a group of Iraqi elderly outpatients. Methods: A cross-sectional, questionnaire-based study was conducted in a sample of 85 Iraqi elderly aged ≥65 years of either gender. Participants had face-to-face interviews to answer a comprehensive questionnaire. Each drug taken by the patient was evaluated according to Beers criteria. Results: Females constituted 45.9% of the total. The average age was 69.9 years (± 4.6). Nearly 30% of the patients had 3 different diseases, and 17.8% had ≥4 different ones, with cardiovascular diseases were the most prevalent. Polypharmacy was notably identified in 47.1% of the total studied population. Twenty-eight out of 85 patients did not know the actual reason of taking at least one of their medications, and 42% were not taking their drugs as directed. Remarkably, 43.5% of patients were recognized as taking at least one medication to be avoided in elderly people according to the Beers criteria. The most common inappropriate drugs were glyburide, and proton-pump inhibitors. Conclusion: There was an obvious absence of any role of pharmacists in the health care system for our studied population. Health care professionals are encouraged to review the medications prescribed for geriatric patients using updated safety guidelines to prevent the risks associated with potentially inappropriate medications.

scholarly journals Women, Exercise, and Eating Disorder Recovery: The Normal and the Pathological

2021 ◽  
pp. 104973232199204
Author(s):  
Hester Hockin-Boyers ◽  
Megan Warin
Keyword(s):  
Health Care ◽  
Eating Disorder ◽  
Affect Regulation ◽  
Health Care Professionals ◽  
Value Systems ◽  
Structured Interviews ◽  
Data Set ◽  
The United Kingdom ◽  
Theoretical Frame ◽  
Intensity Of Exercise

The appropriate form, regularity, and intensity of exercise for individuals recovering from eating disorders is not agreed upon among health care professionals or researchers. When exercise is permitted, it is that which is mindful, embodied, and non-competitive that is considered normative. Using Canguilhem’s concepts of “the normal and the pathological” as a theoretical frame, we examine the gendered assumptions that shape medical understandings of “healthy” and “dysfunctional” exercise in the context of recovery. The data set for this article comes from longitudinal semi-structured interviews with 19 women in the United Kingdom who engaged in weightlifting during their eating disorder recovery. We argue that women in recovery navigate multiple and conflicting value systems regarding exercise. Faced with aspects of exercise that are pathologized within the eating disorder literature (such as structure/routine, body transformations, and affect regulation), women re-inscribe positive value to these experiences, thus establishing exercise practices that serve them.

New digital models of care in ophthalmology, during and beyond the COVID-19 pandemic

2021 ◽  
pp. bjophthalmol-2020-317683
Author(s):  
Yih-Chung Tham ◽  
Rahat Husain ◽  
Kelvin Yi Chong Teo ◽  
Anna Cheng Sim Tan ◽  
Annabel Chee Yen Chew ◽  
...  
Keyword(s):  
Business Models ◽  
Digital Health ◽  
Models Of Care ◽  
Clinical Practices ◽  
Digital Models ◽  
Face To Face ◽  
Potential Barriers ◽  
Digital Business Models ◽  
Brick And Mortar ◽  
Clinical Models

COVID-19 has led to massive disruptions in societal, economic and healthcare systems globally. While COVID-19 has sparked a surge and expansion of new digital business models in different industries, healthcare has been slower to adapt to digital solutions. The majority of ophthalmology clinical practices are still operating through a traditional model of ‘brick-and-mortar’ facilities and ‘face-to-face’ patient–physician interaction. In the current climate of COVID-19, there is a need to fuel implementation of digital health models for ophthalmology. In this article, we highlight the current limitations in traditional clinical models as we confront COVID-19, review the current lack of digital initiatives in ophthalmology sphere despite the presence of COVID-19, propose new digital models of care for ophthalmology and discuss potential barriers that need to be considered for sustainable transformation to take place.

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