scholarly journals The Challenges of Including Patients With Aphasia in Qualitative Research for Health Service Redesign: Qualitative Interview Study

10.2196/12336 ◽  
2020 ◽  
Vol 12 (1) ◽  
pp. e12336 ◽  
Author(s):  
Sarah Prior ◽  
Andrea Miller ◽  
Steven Campbell ◽  
Karen Linegar ◽  
Gregory Peterson
Keyword(s):  
Health Service ◽  
Health Care Providers ◽  
Service Improvement ◽  
Care Providers ◽  
Services Research ◽  
Interview Situation ◽  
Qualitative Interview Study ◽  
Provision Of Services ◽  
Service Redesign ◽  
Design Activities

Background Aphasia is an impairment of language, affecting the production or comprehension of speech and the ability to read or write. Aphasia is a frequent complication of stroke and is a major disability for patients and their families. The provision of services for stroke patients differs across health care providers and regions, and strategies directed at improving these services have benefited from the involvement of patients. However, patients with aphasia are often excluded from these co-design activities due to a diminished capacity to communicate verbally and a lack of health researcher experience in working with patients with aphasia. Objective The primary aim of this paper is to identify approaches appropriate for working with patients with aphasia in an interview situation and, more generally, determine the importance of including people with aphasia in health service improvement research. The secondary aim is to describe the experiences of researchers involved in interviewing patients with aphasia. Methods A total of 5 poststroke patients with aphasia participated in face-to-face interviews in their homes to gain insight into their in-hospital experience following their stroke. Interviews were audio-recorded, and thematic analysis was performed. The experiences of the researchers interviewing these patients were informally recorded postinterview, and themes were derived from these reflections. Results The interview technique utilized in this study was unsuitable to gain rich, qualitative data from patients with aphasia. The experience of researchers performing these interviews suggests that preparation, emotion, and understanding were three of the main factors influencing their ability to gather useful experiential information from patients with aphasia. Patients with aphasia are valuable contributors to qualitative health services research, and researchers need to be flexible and adaptable in their methods of engagement. Conclusions Including patients with aphasia in health service redesign research requires the use of nontraditional interview techniques. Researchers intending to engage patients with aphasia must devise appropriate strategies and methods to maximize the contributions and valuable communications of these participants.

scholarly journals The Challenges of Including Patients With Aphasia in Qualitative Research for Health Service Redesign: Qualitative Interview Study (Preprint)

2018 ◽  
Author(s):  
Sarah Prior ◽  
Andrea Miller ◽  
Steven Campbell ◽  
Karen Linegar ◽  
Gregory Peterson
Keyword(s):  
Health Service ◽  
Health Care Providers ◽  
Service Improvement ◽  
Care Providers ◽  
Services Research ◽  
Interview Situation ◽  
Qualitative Interview Study ◽  
Provision Of Services ◽  
Service Redesign ◽  
Design Activities

BACKGROUND Aphasia is an impairment of language, affecting the production or comprehension of speech and the ability to read or write. Aphasia is a frequent complication of stroke and is a major disability for patients and their families. The provision of services for stroke patients differs across health care providers and regions, and strategies directed at improving these services have benefited from the involvement of patients. However, patients with aphasia are often excluded from these co-design activities due to a diminished capacity to communicate verbally and a lack of health researcher experience in working with patients with aphasia. OBJECTIVE The primary aim of this paper is to identify approaches appropriate for working with patients with aphasia in an interview situation and, more generally, determine the importance of including people with aphasia in health service improvement research. The secondary aim is to describe the experiences of researchers involved in interviewing patients with aphasia. METHODS A total of 5 poststroke patients with aphasia participated in face-to-face interviews in their homes to gain insight into their in-hospital experience following their stroke. Interviews were audio-recorded, and thematic analysis was performed. The experiences of the researchers interviewing these patients were informally recorded postinterview, and themes were derived from these reflections. RESULTS The interview technique utilized in this study was unsuitable to gain rich, qualitative data from patients with aphasia. The experience of researchers performing these interviews suggests that preparation, emotion, and understanding were three of the main factors influencing their ability to gather useful experiential information from patients with aphasia. Patients with aphasia are valuable contributors to qualitative health services research, and researchers need to be flexible and adaptable in their methods of engagement. CONCLUSIONS Including patients with aphasia in health service redesign research requires the use of nontraditional interview techniques. Researchers intending to engage patients with aphasia must devise appropriate strategies and methods to maximize the contributions and valuable communications of these participants.

scholarly journals Qualitative Research Methodology and its Scope in Health Services Research

2020 ◽  
Vol 3 (2) ◽  
pp. 18-21
Author(s):  
Naiya Patel
Keyword(s):  
Health Care ◽  
Qualitative Research ◽  
Clinical Trials ◽  
Health Services Research ◽  
Health Services ◽  
Health Care Providers ◽  
Research Methodology ◽  
Care Providers ◽  
Services Research ◽  
Qualitative Research Methodology

Health services research is a multidisciplinary field which involves policy makers, health care providers, as well as quality outcomes professionals of the health services provided in an organizational setting to name some. Using qualitative research methodology to get insights of both the provider and patient experience down the pipeline can help strengthen what is lacking. Bridging the gap of translation research by not just surveys 1 might be an appropriate research methodology, however, inclusion of case studies, ethnographies might help stakeholders in the field, to visualize in depth phenomenon occurring in health services research field. Telly medicine, commercial digital health status trackr might be some of the inetrventions to improvise health care services, however, knowing what are the actual needs at individual level might efficiently help in redistribution of resources or policy laws. Recruiting for clinical trials through story telling communication technology2,3, might help in recruitment for novel drug therapies to explore possibilities, however, exploring the barriers to enroll for the clinical trials, or why the drug might work effectively in some cultural population and why not on others, can only be efficiently explored through qualitative research methodologies.

scholarly journals Living with a chronic disease: insights from patients with a low socioeconomic status

2021 ◽  
Vol 22 (1) ◽  
Author(s):  
Lisa Van Wilder ◽  
Peter Pype ◽  
Fien Mertens ◽  
Elke Rammant ◽  
Els Clays ◽  
...  
Keyword(s):  
Socioeconomic Status ◽  
Chronic Disease ◽  
Health Care Providers ◽  
Low Socioeconomic Status ◽  
Disease Burden ◽  
Chronically Ill ◽  
Low Ses ◽  
Care Providers ◽  
Low Socioeconomic ◽  
Qualitative Interview Study

Abstract Background Little is known about how patients with low socioeconomic status (SES) experience their chronic disease, and how it impacts health-related quality of life (HRQoL). Compared to their more affluent counterparts, worse outcomes have been reported. A better understanding of the domains of HRQoL that are relevant to these specific populations is therefore needed. We explored the experiences of living with a chronic disease in low SES persons. Methods A qualitative interview study was performed in Flanders, Belgium. Semi-structured interviews were conducted in chronically ill patients, selected through purposive sampling. Interviews were audio-recorded and transcribed verbatim. Analysis followed an inductive and iterative approach. Results Fifteen patients were interviewed. Six major themes were identified: a heavy bag to carry, loss of autonomous life, inner and outer loneliness, emotional imbalance, unmet need for support, and coping strategies. Patients experienced their illness as an additional problem on top of all other problems (i.e. financial/social problems, traumatic life events). In general, the disease burden and non-disease burden were mutually reinforcing, resulting in greater dependency, greater risk of social isolation, greater psychological distress, and greater risk of impaired HRQoL. Conclusions This study is the first to provide detailed insight into the experiences of living with a chronic disease in low SES persons. A conceptual model is proposed that can be used in daily clinical practice to raise awareness among clinicians and health care providers that the patient’s needs go beyond the disease itself. Future research is needed to validate and test the model.

scholarly journals Resilience for family carers of advanced cancer patients—how can health care providers contribute? A qualitative interview study with carers

2018 ◽  
Vol 32 (8) ◽  
pp. 1410-1418 ◽  
Author(s):  
Ingebrigt Røen ◽  
Hans Stifoss-Hanssen ◽  
Gunn Grande ◽  
Anne-Tove Brenne ◽  
Stein Kaasa ◽  
...  
Keyword(s):  
Health Care ◽  
Palliative Care ◽  
Cancer Patients ◽  
Advanced Cancer ◽  
Health Care Providers ◽  
Support Needs ◽  
Care Providers ◽  
Family Carers ◽  
Advanced Cancer Patients ◽  
Qualitative Interview Study

Background: Caring for advanced cancer patients affects carers’ psychological and physical health. Resilience has been defined as “the process of adapting well in the face of adversity, trauma, tragedy, threats or even significant sources of threat.” Aim: The aim of this study was to explore factors promoting carer resilience, based on carers’ experiences with and preferences for health care provider support. Design: Qualitative, semi-structured, individual interviews with family carers of advanced cancer patients were performed until data saturation. The interviews were recorded, transcribed, and analyzed using systematic text condensation. Setting/participants: Carers ( n = 14) of advanced cancer patients, not receiving curative treatment, admitted to an integrated curative and palliative care cancer outpatient clinic or to a university hospital cancer clinic, were included. Results: 14 carers of advanced cancer patients were included; 7 men, 7 women, and mean age of 59 years; 3 were bereaved; 12 were partners; 5 had young and teenage children. Four main resilience factors were identified: (1) being seen and known by health care providers—a personal relation; (2) availability of palliative care; (3) information and communication about illness, prognosis, and death; and (4) facilitating a good carer–patient relation. Conclusion: Health care providers may enhance carers’ resilience by a series of simple interventions. Education should address carers’ support needs and resilience. Systematic assessment of carers’ support needs is recommended. Further investigation is needed into how health care providers can help carers and patients communicate about death.

scholarly journals Experiences Among School Personnel and School Nurses on Educational Adaptations for Students With CFS/ME: A Qualitative Interview Study

2021 ◽  
Vol 9 ◽  
Author(s):  
Wenche Ann Similä ◽  
Torstein Baade Rø ◽  
Torunn Hatlen Nøst
Keyword(s):  
Health Care Providers ◽  
Social Life ◽  
Interdisciplinary Collaboration ◽  
School Personnel ◽  
Chronic Fatigue ◽  
School Nurses ◽  
Care Providers ◽  
Teacher Student ◽  
School Absence ◽  
Qualitative Interview Study

Introduction: Chronic fatigue syndrome (CFS/ME) is a disabling disease severely impacting school attendance, education, and social life in young students. Uncertainties surrounding CFS/ME etiology may impact the interpretation of CFS/ME in schools. Thus, school personnel need information from health care providers to make adequate adaptations to education and social life at school for these students.Objectives: To explore teachers, counselors, and school nurses' experiences with adapting education for students with CFS/ME aged 13–19 in secondary and high schools.Design: A qualitative study with focus group interviews and individual interviews performed face-to-face or digitally between November 2020 and March 2021. Data were analyzed using Systematic text condensation.Participants: Six teachers, two counselors, and four school nurses in secondary and high school participated.Results: Adapting education for students with CFS/ME was challenging, especially before the students received a diagnosis. The challenges were related to identifying the students' adaptational needs, maintaining a teacher-student relationship due to school absence, difficulties in maintaining continuity of education, and uncertainty regarding the diagnosis. Successful adaptations were related to quickly reacting to school absence, early referral to educational, psychological services, a close collaboration with the school management, and the development of digital teaching for students with CFS/ME. Interdisciplinary collaboration and a clear, constructive plan with adaptive measures, including maintained teacher-student communication and educational and social adaptations, may be useful in preventing the losses, young people, with CFS/ME experience.Conclusion: Early interdisciplinary collaboration to adapt education and social life at school for students with CFS/ME, may support teachers, counselors, and school nurses in their efforts to adapt education and prevent losses related to academic and social development in students with CFS/ME.

Perspectives of health care providers on the role of culture in the self-care of patients with chronic heart failure: a qualitative interview study conducted in Israel

2020 ◽  
Author(s):  
Adam Joensson ◽  
Emilie Cewers ◽  
Jean Marc Weinstein ◽  
Tuvia Ben Gal ◽  
Anna Stromberg ◽  
...  
Keyword(s):  
Heart Failure ◽  
Health Care ◽  
Health Care Providers ◽  
Healthcare Providers ◽  
Self Care ◽  
Cultural Background ◽  
Care Providers ◽  
Qualitative Interview Study ◽  
Specific Barriers

Abstract Background: Self-care is recognized as important behaviour in chronic diseases such as heart failure (HF). The cultural background of patients with HF is one of the factors that can be considered to affect their adherence to self-care. The cultural background of the health care providers might also influence their view on self-care behaviour and the education they provide. The aim of this study was to describe health care providers' perceptions of the role of culture in self-care and how those perceptions shape their experiences and their practices.Methods: A qualitative study was performed in Israel, a country with a culturally diverse population. Data was collected using semi-structured interviews with 12 healthcare providers from different cultural backgrounds, selected by purposeful sampling, from two hospitals in Israel. Interviews were audio recorded and transcribed verbatim. Data was analysed using content analysis.Results: Healthcare providers experienced cultural background influenced their patients’ self-care behaviour. Perceived cultural-specific barriers to self-care such as: dietary traditions interfering with the recommended HF diet, willingness to undertake self-care and beliefs conflicting with medical treatment were identified. Healthcare providers described that they adapted their patient education and care based on the cultural background of the patients. Shared cultural background, awareness and knowledge of differences were described as positively influencing self-care education, while cultural differences could complicate this process. These findings are encapsulated within four categories regarding perceptions of health care providers: ‘Culture permeates self-care behaviours’, ‘Culture influence the way care is provided’, ‘Mutual cultural background impacts the mindset to address self-care’ and ‘Culture is only a small piece of the puzzle...’Conclusions: Cultural-specific barriers for self-care were perceived by health care providers and they identified that their own cultural background shapes their experiences and their practices.

Provision of Related Services for Children With Chronic Disabilities

PEDIATRICS ◽  
1993 ◽  
Vol 92 (6) ◽  
pp. 879-881
Author(s):  
Keyword(s):  
Special Education ◽  
Health Care Providers ◽  
Children With Disabilities ◽  
Public Law ◽  
Speech Pathology ◽  
Care Providers ◽  
Related Services ◽  
Free Appropriate Public Education ◽  
Provision Of Services ◽  
Education Act

Since 1975 all children with disabilities specifically delineated by law have had available to them "a free, appropriate public education that includes special education and related services to meet their unique needs." This access has been made possible by the passage of Public Law 94-142,1 The Education for All Handicapped Children Act of 1975. This law was amended in October 1990 with passage of Public Law 101-476, The Individuals With Disabilities Education Act (IDEA). Part B of Public Law 101-476 primarily details the identification and provision of services for children with disabilities. Unfortunately, the implementation of Part B of this law has been limited for many children by a number of significant and complex issues. The term "related services" as currently defined in Part B of the IDEA includes the following: ... transportation and such developmental, corrective, and other supportive services (including speech pathology and audiology, psychological services, physical and occupational therapy, recreation and social work services, and medical and counseling services, including rehabilitation counseling, except that such medical services shall be for diagnostic and evaluation purposes only) as may be required to assist a child with a disability to benefit from special education. Health care providers frequently view the related services listed above as medically necessary and/or helpful for children with disabilities without the proviso that these services must be necessary for special education. This difference in perspective and interpretation by pediatricians and parents often leads to misunderstandings, frustrations, conflicts, and problems in the development and implementation of related services within school programs for children with disabilities.

Afghan refugees’ experience of Iran’s health service delivery

2016 ◽  
Vol 9 (2) ◽  
pp. 75-85 ◽  
Author(s):  
Abbas Heydari ◽  
Rana Amiri ◽  
Nahid Dehghan Nayeri ◽  
Vedadhir AboAli
Keyword(s):  
Health Care ◽  
Health Service ◽  
Service Delivery ◽  
Health System ◽  
Health Care Providers ◽  
Medical Science ◽  
Health Service Delivery ◽  
Care Providers ◽  
Content Type ◽  
Afghan Refugees

Purpose – The purpose of this paper is to explore experiences of Afghan refugees from health service delivery in Mashhad, Iran. Design/methodology/approach – This is a descriptive study with contextual and qualitative design. Semi-structured interview conducted with 19 Afghan refugees and their caregivers and a focus group session were held with Afghan medical science students. Purposive sampling technique was used to select participants. Data were analysed by qualitative content analysis of Graneheim and Lundman. Lincoln and Guba’s criteria were implemented to ensure trustworthiness. Findings – The results with the core concept of “position of immigrants in the health system” were presented at four themes of “perceived discrimination”, “snowed with loneliness”, “feeling inferior”, and “gratitude”. Research limitations/implications – This study has some implications for researchers and practitioners. The present study is the first study that was done on the health of Afghan refugees in Iran, therefore it can be a ground for further research. In addition, it has valuable results regarding the Afghan immigrants’ experience of health care system of Iran. Practical implications – It can be useful for improving the condition of immigrants in Iran and for improving Iran’s health system. In order to improve the health system in Iran, authorities should pay much attention to transcultural caring and needs of minorities. Furthermore, health workers should be trained to appropriately take care of all patients, without prejudice. Originality/value – Overall the study revealed that there is inequity in access to health services among Afghan refugees in Iran. The findings, although not generalized, offer important insights into health care providers in Iran which should be delivering health service without prejudice. The authors recommended that policies of public medical insurance and assistance programme should be implemented for providing affordable health care services for Afghan refugees.

Urban versus rural populations' views of health care in Scotland

2005 ◽  
Vol 10 (4) ◽  
pp. 212-219 ◽  
Author(s):  
Jane Farmer ◽  
Kerstin Hinds ◽  
Helen Richards ◽  
David Godden
Keyword(s):  
Health Care ◽  
Health Service ◽  
Rural Areas ◽  
Urban Areas ◽  
Service Improvement ◽  
Care Needs ◽  
Rural And Urban Areas ◽  
Rural And Urban ◽  
Service Redesign ◽  
Uk National Health Service

Objectives: To compare satisfaction with, and expectations of, health care of people in rural and urban areas of Scotland. Methods: Questions were included in the 2002 Scottish Social Attitudes Survey (SSAS). The Scottish House-hold Survey urban-rural classification was used to categorize locations. A random sample of 2707 people was contacted to participate in a face-to-face interview and a self-completion questionnaire survey. SPSS (v.10) was used to analyse the data. Relationships between location category and responses were explored using logistic regression analysis. Results: In all, 1665 (61.5%) interviews were conducted and 1507 (56.0%) respondents returned self-completion questionnaires. Satisfaction with local doctors and hospital services was higher in rural locations. While around 40% of those living in remote areas thought A&E services too distant, this did not rank as a top priority for health service improvement. This could be due to expectations that general practitioners would assist in out-of-hours emergencies. Most Scots thought services should be good in rural areas even if this was costly, and that older people should not be discouraged from moving to rural areas because of their likely health care needs. In all, 79% of respondents thought that care should be as good in rural as urban areas. Responses to many questions were independently significantly affected by rural/urban location. Conclusions: Most Scots want rural health care to continue to be good, but the new UK National Health Service (NHS) general practitioner contract and service redesign will impact on provision. Current high satisfaction, likely to be due to access and expectations about local help, could be affected. This study provides baseline data on attitudes and expectations before potential service redesign, which should be monitored at intervals in future.

scholarly journals Measuring health care experiences that matter to Indigenous people in Australia with cancer: identifying critical gaps in existing tools

2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Monica Green ◽  
Joan Cunningham ◽  
Kate Anderson ◽  
Kalinda Griffiths ◽  
Gail Garvey
Keyword(s):  
Health Care ◽  
Indigenous People ◽  
Patient Experience ◽  
Health Care Providers ◽  
Cancer Care ◽  
Cultural Safety ◽  
Service Improvement ◽  
Care Providers ◽  
Indigenous Worldview ◽  
Critical Aspects

Abstract Background Measurement of patients’ healthcare experiences is increasingly used as an indicator of quality of care, but there are concerns that existing measures omit information that is meaningful to patients and that results may not be used systematically to inform service improvement. Further, current approaches may be inadequate for some population groups, such as Indigenous people in Australia, whose healthcare experience is impacted by the context of colonisation and discordance between Indigenous understandings of health and the Western biomedical health system. This study aimed to assess the extent to which existing patient experience measures used in Australia collect information about critical aspects of cancer care, as previously identified by Indigenous people affected by cancer and their health care providers. Methods A two-stage process was used to examine the adequacy of existing patient experience measures for Indigenous people in Australia: (1) relevant tools and measures were identified and assessed, and four measures selected as suitable comparators; (2) comparators were examined in detail and mapped against topics identified in earlier research as important to Indigenous people with cancer. Gaps in topic coverage in comparators were identified. Results No comparators completely captured the critical aspects of cancer care identified by Indigenous people affected by cancer and their health care providers. The number of topics ‘partially’ captured by the four comparators ranged from 4 to 7 out of 9. While most topics were partially covered, the lack of questions around culture and cultural safety was notable. Conclusions Existing tools are likely to miss key aspects of Indigenous peoples’ experiences of cancer care in Australia. Failure to adequately assess care experiences related to cultural safety may compromise efforts to improve health outcomes. Addressing gaps requires development of experience measures that are strengths-based, reflect an Indigenous worldview and measure aspects of experience relevant to Indigenous people.

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