Collection of Data on Persons Living With Dementia Who Go Missing: First Responder Perspectives

Abstract While it is commonly cited that 60% of persons living with dementia (PLWD) wander, it is unclear whether this number reflects global contexts. Population aging has created a pressing need for the development of programs to mitigate the risks of PLWD from getting lost and going missing. Such programs would require a national strategy for the collection and integration of data on missing incidents involving this population. This study is a first step to inform such a strategy. The purposes were to: 1) identify approaches to data collection on missing persons incidents involving PLWD among Canadian police and search and rescue (SAR) organizations; 2) describe the foreseeable challenges associated with developing a national data collection strategy. We used generic qualitative description to generate data with fifteen key informants. Virtual semi-structured interviews were completed and transcribed verbatim. Content analysis and trustworthiness strategies guided analysis and rigor. Our findings indicate that police and SAR organizations collect a multitude of data pertaining to missing incidents involving PLWD. However, there is a lack of standardization in data collection, entry and analysis. Privacy legislation, limited resources, and incompatible data management systems pose challenges to data sharing and interoperability. Underreporting of missing incidents to police results in an underestimation of missing incidents. An intersectoral, uniform approach to data collection would enable the storage, analysis and comparison of national data. Accurate data on critical wandering can inform prevention, search strategies, resource allocation and effectiveness of programs.

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Model Kaderisasi Anggota Partai Politik Islam dalam Membentuk Pemimpin Islami

Tadbir: Jurnal Manajemen Dakwah ◽

10.15575/tadbir.v2i2.79 ◽

2017 ◽

Vol 2 (2) ◽

pp. 103-114

Author(s):

Muhammad Saiful Haq AlFaruqy ◽

Ahmad Sarbini ◽

Asep Iwan Setiawan

Keyword(s):

Data Collection ◽

Learning Process ◽

Structured Interviews ◽

The West ◽

West Java ◽

Qualitative Descriptive

Penelitian ini dilakukan untuk mengentahui tugas pokok Bidang Kaderisasi DPW PKS Jawa Barat, untuk mengetahui proses tahapan dan sistem model kaderisasi PKS yang marhalah (berjenjang), untuk mengetahui dan mendapatkan data dalam memebentuk kader pemimpin Islami Bidang Kaderisasi DPW PKS Jawa Barat. Metode yang digunakan dalam penelitian ini ialah deskrptif kualitatif dengan tekinik pengeumpulan data berupa wawancara terstrurktur, observasi, dan studi dokumentasi.. Hasil dari penelitian ini menunjukan bahwa model kaderisi dalam menciptakan pemimpin Islami melalui tahapan-tahapan pembinaan kader yang marhalah (berjenjang). Yaitu, Pertama, ta’lim proses pembelajaran yang mana bertujuan para kader diberikan kurikulum kaderisiasi partai. Kedua, Tandzhim yang mana setelah pembelajaran diharapkan para kader dapat mengasah dan mengimplementasikan hasil kurikulum kaderisasi. Ketiga, taqwin para kader harus dapat menginternalisasi ajaran Islam dalam partai maupun kehidupan berbangsa dan bernegara. This research was conducted to identify the main tasks of the West Java PKS DPW Cadre Field Division, to find out the stages and stages of the PKS cadre model model that is marhalah (tiered), to find out and obtain data in forming the Islamic leaders cadre of the West Java PKW DPW Cadre. The method used in this study is a qualitative descriptive with data collection techniques in the form of structured interviews, observations, and documentation studies. The results of this study indicate that the cadre model in creating Islamic leaders through the stages of training cadres who are marhalah (tiered). That is, First, ta'lim the learning process in which the cadres aim to be given a party cadre curriculum. Second, Tandzhim which after learning is expected that the cadres can hone and implement the results of the regeneration curriculum. Third, taqwin of cadres must be able to internalize the teachings of Islam in the party and the life of the nation and state.

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TOLERANSI DAN KERUKUNAN ANTARUMAT BERAGAMA (POLA KOMUNIKASI TOKOH AGAMA DESA ANGGRASMANIS, JENAWI, KARANGANYAR)

Academic Journal of Da'wa and Communication ◽

10.22515/ajdc.v1i1.2411 ◽

2020 ◽

Vol 1 (1) ◽

pp. 58

Author(s):

Noval Setiawan ◽

Sarbini Sarbini

Keyword(s):

Data Collection ◽

Qualitative Approach ◽

Communication Patterns ◽

Qualitative Description ◽

Religious Communities ◽

The People ◽

Direct Feedback ◽

The Village

The people who live in Anggrasmanis village, consist of various kinds of religions. There are Islam, Christian, and Hinduism. The tolerance between religious communities in Anggrasmanis village was maintained even though it was often tinged with tension and suspicion. This encourages religious figure to build communication. This study aims to describe how the pattern of communication inter-religious figures in Anggrasmanis village, so attitude of tolerance is born. The type of research used is a qualitative description method with qualitative approach. Data collection techniques using observation, interviews, and documentation. Researchers’ finding communication patterns of religious figures in Anggrasmanis village are linear communication patterns and circular communication patterns that occur in direct conversation between religious figures and direct feedback. The role of religious figures to building tolerance at Anggrasmanis village is by participating in activities at the village such as religious holidays.

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Online, Asynchronous Data Collection in Qualitative Research

The Oxford Handbook of Methods for Public Scholarship ◽

10.1093/oxfordhb/9780190274481.013.28 ◽

2019 ◽

pp. 442-467

Author(s):

Tracy Spencer ◽

Linnea Rademaker ◽

Peter Williams ◽

Cynthia Loubier

Keyword(s):

Qualitative Research ◽

Data Collection ◽

Face To Face ◽

Research Outcomes ◽

Data Collection Strategy ◽

Time Distance ◽

Privacy Issues

The authors discuss the use of online, asynchronous data collection in qualitative research. Online interviews can be a valuable way to increase access to marginalized participants, including those with time, distance, or privacy issues that prevent them from participating in face-to-face interviews. The resulting greater participant pool can increase the rigor and validity of research outcomes. The authors also address issues with conducting in-depth asynchronous interviews such as are needed in phenomenology. Advice from the field is provided for rigorous implementation of this data collection strategy. The authors include extensive excerpts from two studies using online, asynchronous data collection.

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“My coupons are like gold”: experiences and perceived outcomes of low-income adults participating in the British Columbia Farmers’ Market Nutrition Coupon Program

Public Health Nutrition ◽

10.1017/s1368980021001567 ◽

2021 ◽

pp. 1-30

Author(s):

Stéphanie Caron-Roy ◽

Sayeeda Amber Sayed ◽

Katrina Milaney ◽

Bonnie Lashewicz ◽

Sharlette Dunn ◽

...

Keyword(s):

British Columbia ◽

Rural Communities ◽

Low Income ◽

Well Being ◽

Qualitative Description ◽

Farmers Markets ◽

Social Connections ◽

Structured Interviews ◽

Program Outcomes ◽

Farmers Market

ABSTRACT Objective: The British Columbia Farmers’ Market Nutrition Coupon Program (FMNCP) provides low-income households with coupons valued at $21/week for 16 weeks to purchase healthy foods in farmers’ markets. Our objective was to explore FMNCP participants’ experiences of accessing nutritious foods, and perceived program outcomes. Design: This study used qualitative description methodology. Semi-structured interviews were conducted with FMNCP participants during the 2019 farmers’ market season. Directed content analysis was used to analyse the data whereby the five domains of Freedman et al’s framework of nutritious food access provided the basis for an initial coding scheme. Data that did not fit within the framework’s domains were coded inductively. Setting: One urban and two rural communities in British Columbia, Canada. Participants: 28 adults who were participating in the FMNCP. Results: Three themes emerged: Autonomy and Dignity; Social Connections and Community Building; and Environmental and Programmatic Constraints. Firstly, the program promoted a sense of autonomy and dignity through financial support, increased access to high-quality produce, food-related education and skill development, and mitigating stigma and shame. Secondly, shopping in farmers’ markets increased social connections and fostered a sense of community. Finally, participants experienced limited food variety in rural farmers’ markets, lack of transportation, and challenges with redeeming coupons. Conclusions: Participation in the FMNCP facilitated access to nutritious foods and enhanced participants’ diet quality, well-being and health. Strategies such as increasing the amount and duration of subsidies, and expanding programs may help improve participants’ experiences and outcomes of farmers’ market food subsidy programs.

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Loneliness Among the Elderly in Rural Contexts: A Mixed-Method Study Protocol

International Journal of Qualitative Methods ◽

10.1177/1609406921996861 ◽

2021 ◽

Vol 20 ◽

pp. 160940692199686

Author(s):

Borja Rivero Jiménez ◽

David Conde-Caballero ◽

Lorenzo Mariano Juárez

Keyword(s):

Data Collection ◽

Mixed Method ◽

Rural Areas ◽

Population Group ◽

The Elderly ◽

Interaction Patterns ◽

Structured Interviews ◽

Strict Adherence ◽

Data Collection And Analysis ◽

Technological Tools

Loneliness among the elderly has become a pressing issue in Western societies. In the Spanish context, the problem of the so-called “empty” Spain disproportionately affects this population group—elderly individuals living in rural areas with low population density, and therefore at higher risk of social exclusion and isolation. We introduce here a mixed-method, quantitative-qualitative research protocol, triangulated with technological tools, designed to improve both data acquisition and subsequent data analysis and interpretation. This study will take place in a rural locality in the Extremadura region (Spain), chosen according to a particular socio-demographic profile. The De Jong Gierveld Loneliness Scale will be used on a cohort of 80 people over 65 years old. Within this cohort, a smaller sample of 20–30 individuals will be selected for semi-structured interviews about their beliefs and experiences of loneliness. Finally, data gathered from technological tools (smartbands, Bluetooth sensors) will allow us to monitor social interactions and to map daily loneliness/interaction patterns. Data will be triangulated by analyzing and comparing the empirical material gathered through these different methods and tools. Strict adherence to ethical standards for data protection and handling will be essential through data collection and analysis. As well as providing insights into the phenomenon of loneliness in old age, the use of different methods and tools for data collection will provide the basis for an epistemological reflection on the scope and limits of each one of these methods.

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An Exploratory Qualitative Study of Patient and Caregiver Perspectives of Ambulatory Kidney Palliative Care

American Journal of Hospice and Palliative Medicine® ◽

10.1177/1049909120986121 ◽

2021 ◽

pp. 104990912098612

Author(s):

Alycia A. Bristol ◽

Sobaata Chaudhry ◽

Dana Assis ◽

Rebecca Wright ◽

Derek Moriyama ◽

...

Keyword(s):

Palliative Care ◽

Kidney Disease ◽

Chronic Kidney Disease Stage ◽

Stage Iv ◽

The United States ◽

Qualitative Description ◽

Disease Stage ◽

Structured Interviews ◽

Care Clinic ◽

Clinical Model

Objectives: The ideal clinical model to deliver palliative care to patients with advanced kidney disease is currently unknown. Internationally, ambulatory kidney palliative care clinics have emerged with positive outcomes, yet there is limited data from the United States (US). In this exploratory study we report perceptions of a US-based ambulatory kidney palliative care clinic from the perspective of patient and caregiver attendees. The objective of this study was to inform further improvement of our clinical program. Methods: Semi-structured interviews were conducted to elicit the patient and caregiver experience. Eleven interviews (8 patients with chronic kidney disease stage IV or V and 3 caregivers) were analyzed using qualitative description design. Results: We identified 2 themes: “Communication addressing the emotional and physical aspects of disease” and “Filling gaps in care”; Subthemes include perceived value in symptom management, assistance with coping with disease, engagement in advance care planning, program satisfaction and patient activation. Significance of Results: Qualitative analysis showed that attendees of an ambulatory kidney palliative care clinic found the clinic enhanced the management of their kidney disease and provided services that filled current gaps in their care. Shared experiences highlight the significant challenges of life with kidney disease and the possible benefits of palliative care for this population. Further study to determine the optimal model of care for kidney palliative care is needed. Inclusion of the patient and caregiver perspective will be essential in this development.

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Changing relationships: how does patient involvement transform professional identity? An ethnographic study

BMJ Open ◽

10.1136/bmjopen-2020-045520 ◽

2021 ◽

Vol 11 (7) ◽

pp. e045520

Author(s):

Marie-Pierre Codsi ◽

Philippe Karazivan ◽

Ghislaine Rouly ◽

Marie Leclaire ◽

Antoine Boivin

Keyword(s):

Quality Improvement ◽

Data Collection ◽

Health Professionals ◽

Clinical Care ◽

Ethnographic Study ◽

Structured Interviews ◽

Administrative Team ◽

Nurse Clinician ◽

New Perspective ◽

Relational Framework

ObjectivesTo understand identity tensions experienced by health professionals when patient partners join a quality improvement committee.DesignQualitative ethnographic study based on participatory observation.SettingAn interdisciplinary quality improvement committee of a Canadian urban academic family medicine clinic with little previous experience in patient partnership.ParticipantsTwo patient partners, seven health professionals (two family physicians, two residents, one pharmacist, one nurse clinician and one nurse practitioner) and three members of the administrative team.Data collectionData collection included compiled participatory observations, logbook notes and semi-structured interviews, collected between the summer of 2017 to the summer of 2019.Data analysisGhadiri’s identity threats theoretical framework was used to analyse qualitative material and to develop conceptualising categories, using QDA Miner software (V.5.0).ResultsAll professionals with a clinical care role and patient partners (n=9) accepted to participate in the ethnographic study and semi-structured interviews (RR=100%). Transforming the ‘caregiver–patient’ relationship into a ‘colleague–colleague’ relationship generated identity upheavals among professionals. Identity tensions included competing ideals of the ‘good professional’, challenges to the impermeability of the patient and professional categories, the interweaving of symbols associated with one or the other of these identities, and the inner balance between the roles of caregiver and colleague.ConclusionThis research provides a new perspective on understanding how working in partnership with patients transform health professionals’ identity. When they are called to work with patients outside of a simple therapeutic relationship, health professionals may feel tensions between their identity as caregivers and their identity as colleague. This allows us to better understand some underlying tensions elicited by the arrival of different patient engagement initiatives (eg, professionals’ resistance to working with patients, patients’ status and remuneration, professionals’ concerns toward patient ‘representativeness’). Partnership with patients imply the construction of a new relational framework, flexible and dynamic, that takes into account this coexistence of identities.

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Needs of LMIC-based tobacco control advocates to counter tobacco industry policy interference: insights from semi-structured interviews

BMJ Open ◽

10.1136/bmjopen-2020-044710 ◽

2020 ◽

Vol 10 (11) ◽

pp. e044710

Author(s):

Britta Katharina Matthes ◽

Lindsay Robertson ◽

Anna B Gilmore

Keyword(s):

Tobacco Control ◽

Structural Changes ◽

Tobacco Industry ◽

Control Policy ◽

Qualitative Description ◽

Structured Interviews ◽

Middle Income ◽

Adoption And Implementation ◽

National Coalition ◽

Industry Policy

IntroductionAdvocacy is vital for advancing tobacco control and there has been considerable investment in this area. While much is known about tobacco industry interference (TII), there is little research on advocates’ efforts in countering TII and what they need to succeed. We sought to examine this and focused on low- and middle-income countries (LMICs) where adoption and implementation of the Framework Convention on Tobacco Control (FCTC) tend to remain slower and weaker.MethodWe interviewed 22 advocates from eight LMICs with recent progress in a tobacco control policy. We explored participants’ experiences in countering TII, including the activities they undertake, challenges they encounter and how their efforts could be enhanced. We used Qualitative Description to analyse transcripts and validated findings through participant feedback.ResultsWe identified four main areas of countering activities: (1) generating and compiling data and evidence, (2) accessing policymakers and restricting industry access, (3) working with media and (4) engaging in a national coalition. Each area was linked to challenges, including (1) lack of data, (2) no/weak implementation of FCTC Article 5.3, (3) industry ties with media professionals and (4) advocates’ limited capacity. To address these challenges, participants suggested initiatives, including access to country-specific data, building advocates’ skills in compiling and using such data in research and monitoring, and in coalition development; others aiming at training journalists to question and investigate TII; and finally, diverse interventions intended to advance a whole-of-government approach to tobacco control. Structural changes to tobacco control funding and coordination were suggested to facilitate the proposed measures.ConclusionThis research highlights that following years of investment in tobacco control in LMICs, there is growing confidence in addressing TII. We identify straightforward initiatives that could strengthen such efforts. This research also underscores that more structural changes to enhance tobacco control capacity building should be considered.

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HIV MADE ME STRONGER: CONCEPTIONS OF SUCCESSFUL AGING AMONG OLDER WOMEN LIVING WITH HIV

Innovation in Aging ◽

10.1093/geroni/igz038.2812 ◽

2019 ◽

Vol 3 (Supplement_1) ◽

pp. S765-S765

Author(s):

Anna A Rubtsova ◽

Tonya Taylor ◽

Gina Wingood ◽

Igho Ofotokun ◽

Deborah Gustafson ◽

...

Keyword(s):

Data Collection ◽

Qualitative Study ◽

Older Women ◽

Successful Aging ◽

Life Course Perspective ◽

Stable Phase ◽

Structured Interviews ◽

Women Living With Hiv ◽

Living With Hiv

Abstract Little is known about successful aging (SA) among older (50+) women living with HIV (OWLH). Therefore, the purpose of this qualitative study was to examine subjective understandings of SA among OWLH. Participants were OWLH enrolled in the Women’s Interagency HIV Study (WIHS) and those not enrolled in WIHS: 8 in Atlanta, GA (3 WIHS and 5 non-WIHS) and 9 in Brooklyn, NY (6 WIHS and 3 non-WIHS). Semi-structured interviews ranged from 30 to 120 minutes. Several themes emerged in participants’ definitions of SA, e.g. self-care, taking HIV medications, and being resilient (“HIV made me stronger”). Both WIHS and non-WIHS participants emphasized life course perspective in their definitions of SA -- women viewed their aging successful as a more stable phase of life in contrast to hardships they experienced while being younger (e.g., drug use, incarceration). Data collection efforts are ongoing and will allow further characterization of SA among this population.

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Health and death literacy and cultural diversity: insights from hospital-employed interpreters

BMJ Supportive & Palliative Care ◽

10.1136/bmjspcare-2016-001225 ◽

2017 ◽

Vol 10 (1) ◽

pp. e8-e8 ◽

Cited By ~ 4

Author(s):

Barbara Hayes ◽

Anne Marie Fabri ◽

Maria Coperchini ◽

Rafatullah Parkar ◽

Zoe Austin-Crowe

Keyword(s):

End Of Life ◽

Qualitative Description ◽

Cultural Issues ◽

Structured Interviews ◽

Individual Values ◽

Language Groups ◽

A Value ◽

Values And Beliefs ◽

Advance Care ◽

End Of Life Decision

Objectives001225The aim of this qualitative study is to better understand, through the experiences and insights of hospital interpreters, how people from culturally and linguistic diverse (CALD) communities might respond to advance care planning (ACP) and end-of-life discussions.MethodsHospital interpreters from five Melbourne metropolitan health services were recruited for in-depth semi-structured interviews that explored the question, ‘What can be learnt from hospital interpreters about cultural issues related to ACP and end-of-life decision-making?’ Thirty-nine interpreters, representing 22 language groups, were interviewed. Analysis of the transcribed interviews used qualitative description.ResultsThematic analysis identified three major themes: (1) moral difference; (2) health and death literacy; and (3) diversity within culture.ConclusionA value-based approach to ACP is recommended as a way to capture the person’s individual values and beliefs. Health and death literacy have been identified as areas that may be over-estimated; areas that can be addressed and improved, if recognised. Health and death literacy is a particular area that needs to be assessed and addressed as a pre-requisite to ACP discussions.

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