How primary caregivers of individuals with multiple sclerosis cope with social isolation: a grounded theory study in an Iranian context

2020 ◽  
Vol 27 (6) ◽  
pp. 1-13
Author(s):  
Mohammad Taghi Mohseni Takalu ◽  
Seyed Ali Hosseini ◽  
Hamid Reza Khankeh ◽  
Ebrahim Pishyareh ◽  
Hossein Ali Ebrahimi ◽  
...  
Keyword(s):  
Multiple Sclerosis ◽  
Grounded Theory ◽  
Social Isolation ◽  
Health Care Providers ◽  
Primary Caregivers ◽  
Theory Approach ◽  
Care Providers ◽  
Structured Interviews ◽  
Iranian Context ◽  
Constant Comparative Analysis

Background/aims Multiple sclerosis is a progressive neurological disease that can significantly impact the psychosocial aspects of primary caregivers of individuals with multiple sclerosis. This study explored the process of social isolation among primary caregivers of individuals with multiple sclerosis in Kerman, Iran. Methods A grounded theory approach was employed to explore the various aspects of social isolation. Data were collected through unstructured and semi-structured interviews with 15 primary caregivers of individuals with multiple sclerosis, 13 individuals with multiple sclerosis and five health care providers who were selected based on purposeful and theoretical sampling. The data were analysed via constant comparative analysis. Results The core variable identified from the interviews was social isolation. Other concepts that were connected with this were: insufficient knowledge and awareness, escaping stigma, occupational difficulties, marital challenges and management of restrictions. Conclusions Social isolation can affect the wellbeing of primary caregivers of individuals with multiple sclerosis. Recognition and awareness of the process of social isolation and factors influencing it can be beneficial in designing theory-driven evaluation and intervention methods. It is recommended that rehabilitation specialists pay close attention to the common needs and interests of both individuals with multiple sclerosis and their primary caregivers.

scholarly journals Intentional and unintentional nonadherence to hydroxyurea among people with sickle cell disease: a qualitative study

2020 ◽  
Vol 4 (18) ◽  
pp. 4463-4473
Author(s):  
Jason R. Hodges ◽  
Shannon M. Phillips ◽  
Sarah Norell ◽  
Chinonyelum Nwosu ◽  
Hamda Khan ◽  
...  
Keyword(s):  
Sickle Cell Disease ◽  
Sickle Cell ◽  
Health Care Providers ◽  
Constructivist Grounded Theory ◽  
Theory Approach ◽  
Care Providers ◽  
Cell Disease ◽  
Structured Interviews ◽  
Medication Nonadherence ◽  
Negative Perceptions

Abstract Hydroxyurea is an efficacious treatment for sickle cell disease (SCD), but adoption is low among individuals with SCD. The objective of this study was to examine barriers to patients’ adherence to hydroxyurea use regimens by using the intentional and unintentional medication nonadherence framework. We interviewed individuals with SCD age 15 to 49.9 years who were participants in the Sickle Cell Disease Implementation Consortium (SCDIC) Needs Assessment. The intentional and unintentional medication nonadherence framework explains barriers to using hydroxyurea and adds granularity to the understanding of medication adherence barriers unique to the SCD population. In total, 90 semi-structured interviews were completed across 5 of the 8 SCDIC sites. Among interviewed participants, 57.8% (n = 52) were currently taking hydroxyurea, 28.9% (n = 26) were former hydroxyurea users at the time of the interview, and 13.3% (n = 12) had never used hydroxyurea but were familiar with the medication. Using a constructivist grounded theory approach, we discovered important themes that contributed to nonadherence to hydroxyurea, which were categorized under unintentional (eg, Forgetfulness, External Influencers) and intentional (Negative Perceptions of Hydroxyurea, Aversion to Taking Any Medications) nonadherence types. Participants more frequently endorsed adherence barriers that fell into the unintentional nonadherence type (70%) vs intentional nonadherence type (30%). Results from this study will help SCD health care providers understand patient choices and decisions as being either unintentional or intentional, guide tailored clinical discussions regarding hydroxyurea therapy, and develop specific, more nuanced interventions to address nonadherence factors.

scholarly journals Caregivers' Barriers to Disclosing the HIV Diagnosis to Infected Children on Antiretroviral Therapy in a Resource-Limited District in South Africa: A Grounded Theory Study

2012 ◽  
Vol 2012 ◽  
pp. 1-10 ◽  
Author(s):  
Sphiwe Madiba ◽  
Kebogile Mokwena
Keyword(s):  
Grounded Theory ◽  
Health Care Providers ◽  
Critical Role ◽  
Death And Dying ◽  
Hiv Disclosure ◽  
Theory Approach ◽  
Care Providers ◽  
Hiv Diagnosis ◽  
Resource Limited ◽  
Group Interviews

We used a grounded theory approach to explore how a sample of caregivers of children on antiretroviral treatment (ART) experience HIV disclosure to their infected children. This paper explores caregivers' barriers to disclosing HIV to infected children. Caregivers of children aged 6–13 years who were receiving ART participated in four focus-group interviews. Three main themes, caregiver readiness to tell, right time to tell, and the context of disclosure, emerged. Disclosure was delayed because caregivers had to first deal with personal fears which influenced their readiness to disclose; disclosure was also delayed because caregivers did not know how to tell. Caregivers lacked disclosure skills because they had not been trained on how to tell their children about their diagnosis, on how to talk to their children about HIV, and on how to deal with a child who reacts negatively to the disclosure. Caregivers feared that the child might tell others about the diagnosis and would be discriminated and socially rejected and that children would live in fear of death and dying. Health care providers have a critical role to play in HIV disclosure to infected children, considering the caregivers' expressed desire to be trained and prepared for the disclosure.

scholarly journals Hunting to Feel Human, the Process of Women’s Help-Seeking for Suicidality After Intimate Partner Violence: A Feminist Grounded Theory and Photovoice Study

2020 ◽  
Vol 7 ◽  
pp. 233339361990089
Author(s):  
Petrea Taylor
Keyword(s):  
Health Care ◽  
Intimate Partner Violence ◽  
Grounded Theory ◽  
Health Care Providers ◽  
Partner Violence ◽  
Help Seeking ◽  
Intimate Partner ◽  
Care Providers ◽  
Qualitative Research Design ◽  
Constant Comparative Analysis

Women reach out to health care providers for a multitude of health problems in the aftermath of intimate partner violence, including suicidality; however, little is known about how they seek help. The purpose of this study was to explore how women seek help for suicidality after intimate partner violence using a feminist grounded theory and photovoice multiple qualitative research design. Interviews were conducted with 32 women from New Brunswick, Canada, and seven from this sample also participated in five photovoice meetings where they critically reflected on self-generated photos of their help-seeking experiences. Data were analyzed using the constant comparative analysis of grounded theory. Hunting to Feel Human involves fighting for a sense of belonging and personal value by perceiving validation from health care providers. Women battled System Entrapment, a feeling of being dehumanized, by Gauging for Validation and Taking the Path of Least Entrapment. Implications for health care providers include prioritizing validating interactions and adopting a relational approach to practice.

scholarly journals 'A balancing act'. Living with severe chronic obstructive pulmonary disease in Southern New Zealand: a qualitative study

2020 ◽  
Vol 12 (2) ◽  
pp. 166
Author(s):  
Emma Tumilty ◽  
Fiona Doolan-Noble ◽  
Anna Tiatia Fa'atoese Latu ◽  
Kathryn McAuley ◽  
Jack Dummer ◽  
...  
Keyword(s):  
Social Support ◽  
Pulmonary Disease ◽  
Social Isolation ◽  
Health Care Providers ◽  
Chronic Obstructive ◽  
Care Providers ◽  
Structured Interviews ◽  
Obstructive Pulmonary Disease ◽  
Southern Health ◽  
Severe Copd

ABSTRACT INTRODUCTIONChronic obstructive pulmonary disease (COPD) is a common chronic condition managed in primary care. AIMTo understand how patients with severe COPD living in the Southern Health Region (Otago and Southland) experience and cope with the condition. METHODSSemi-structured interviews were undertaken with 23 patients with severe COPD (defined using the 2013 GOLD classification). A thematic analysis was conducted. RESULTSPatients’ accounts of living with severe COPD revealed four themes: loss, adaptation, isolation and social support. All participants discussed their sense of loss in coming to terms with having COPD and the ongoing restrictions or changes that were associated with breathlessness and fatigue. These losses required adaptation in daily living. Some patients struggled to adjust to new limitations and needed to rely on others for support. Others found ways to adapt their surroundings or ways of doing things while trying to maintain the same activities. Isolation was described in two ways – direct (no longer being able to easily socialize because activities often caused breathlessness) and indirect (the feeling of being isolated from others because they do not understand what it is like to live with COPD). Social support, including support provided by group-based pulmonary rehabilitation, helped to address the problems of social isolation. DISCUSSIONLiving with severe COPD is a ‘balancing act’ between insecurity (loss and isolation) and resilience (adaptation and social support). Health-care providers need to be proactive in identifying and managing patients’ unmet health needs and promote activities that reduce social isolation.

Advance care planning in community dwellers: A constructivist grounded theory study of values, preferences and conflicts

2018 ◽  
Vol 33 (1) ◽  
pp. 66-73 ◽  
Author(s):  
Ravi Taneja ◽  
Lisa Y Faden ◽  
Valerie Schulz ◽  
Asha Rawal ◽  
Kristina Miller ◽  
...  
Keyword(s):  
Grounded Theory ◽  
Health Care Providers ◽  
Advance Care Planning ◽  
Acute Care Hospital ◽  
Constructivist Grounded Theory ◽  
Care Planning ◽  
Care Hospital ◽  
Care Providers ◽  
Structured Interviews ◽  
Advance Care

Background: Most laypeople have not engaged in any advance care planning. Yet they are expected to articulate choices for life-sustaining interventions when they need admission to an acute care hospital in Canada. Aim: To describe how laypeople understand and make decisions for life-sustaining interventions when engaging in advance care planning. Design: Semi-structured interviews using constructivist grounded theory methodology and purposive sampling. Setting: Mid-size Canadian urban community Participants: In total, 20 healthy laypeople, 55 years and older, participated in in-depth semi-structured face-to-face interviews. Theoretical sampling was used to explore findings from the first round of interviews. Ten participants were invited for repeat interviews. Results: Four major themes were identified. Most participants claimed at the outset that they had engaged in advance care planning, but they were unfamiliar with contemporary life-sustaining interventions and had not factored these into their decisions. Participants’ confidence in their substitute decision makers precluded them from having explicit discussions with these individuals. Participants expressed their values and preferences in terms of unacceptable functional outcomes from serious illness, rather than desired interventions. The process of articulating their preferences within the interviews was subject to decision conflicts, which in turn helped them re-evaluate and refine their decisions. Conclusion: Advance care planning for the healthy older adult is challenging. Meaningful engagement may lead to conflicts in decision-making. Efforts to improve engagement must reflect what patients know and understand, their focus on unacceptable negative outcomes rather than interventions, and the need for iterative discussions with health-care providers.

Acceptance of the HPV Vaccine in a Multiethnic Sample of Latinx Mothers

2021 ◽  
Vol 31 (3) ◽  
pp. 472-483
Author(s):  
Ana Cristina Lindsay ◽  
Madelyne J. Valdez ◽  
Denisse Delgado ◽  
Emily Restrepo ◽  
Yessica M. Guzmán ◽  
...  
Keyword(s):  
Health Care Providers ◽  
Thematic Analysis ◽  
Hpv Vaccine ◽  
Female Adolescents ◽  
Future Research ◽  
Care Providers ◽  
Foreign Born ◽  
Structured Interviews ◽  
Direct Benefits ◽  
Multiethnic Sample

This descriptive qualitative study explored Latinx mothers’ acceptance of the human papillomavirus (HPV) vaccine for their adolescent children. Data were collected through individual, semi-structured interviews and analyzed using a hybrid method of thematic analysis that incorporated deductive and inductive approaches. Twenty-two ( n = 22), mostly foreign-born, Latinx mothers of male and female adolescents participated in the study. Three main themes and nine subthemes emerged from the analyses. Findings identified the need for increased efforts to raise awareness and knowledge among Latinx mothers of the direct benefits of the HPV vaccine for sons, including stressing prevention of HPV-associated cancers in males. Findings also underscore the need for improved health care providers’ communication and recommendation of the HPV vaccine for Latinx adolescent males. Future research should intervene upon the study’s findings to address barriers that remain and affect Latinx mothers’ acceptance and uptake of the HPV vaccine for their children, in particular their sons.

Patients’ Perspective on the Psychological Impact of Multiple Sclerosis on Their Life

2021 ◽  
pp. 105413732110068
Author(s):  
Chrysoula Baka ◽  
Kalliopi Chatira ◽  
Evangelos C. Karademas ◽  
Konstantinos G. Kafetsios
Keyword(s):  
Multiple Sclerosis ◽  
Grounded Theory ◽  
Psychological Impact ◽  
Autoimmune Disorder ◽  
Positive Outcomes ◽  
Structured Interviews ◽  
Psychosocial Wellbeing ◽  
Positive Meaning ◽  
Patients Perspective ◽  
The Way

Multiple sclerosis is a chronic autoimmune disorder that greatly impacts on patients’ physical and psychosocial wellbeing. The purpose of this study is to investigate the experiences of people diagnosed with multiple sclerosis in Greece (N = 30), with regard to the way they coped with the diagnosis and the symptoms, the psychological implications of the disorder and the meaning they attributed to it. Data were collected through semi-structured interviews and they were analyzed using grounded theory. The findings showed that despite the negative implications of the disorder and the difficulty in managing the diagnosis and the symptoms, half of the patients attributed positive meaning to the disorder. Taking care of oneself, re-evaluation of life and a sense of liberation were described as the positive outcomes of experiencing multiple sclerosis.

scholarly journals Care-seeking and managing diabetes in rural Bangladesh: a mixed methods study

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Hannah Maria Jennings ◽  
Joanna Morrison ◽  
Kohenour Akter ◽  
Hassan Haghparast-Bidgoli ◽  
Carina King ◽  
...  
Keyword(s):  
Quality Of Care ◽  
Health Care Providers ◽  
Low Income ◽  
Diabetes Management ◽  
Local Health ◽  
Care Seeking ◽  
Care Providers ◽  
Structured Interviews ◽  
Rural Bangladesh

Abstract Background Type 2 diabetes mellitus poses a major health challenge worldwide and in low-income countries such as Bangladesh, however little is known about the care-seeking of people with diabetes. We sought to understand the factors that affect care-seeking and diabetes management in rural Bangladesh in order to make recommendations as to how care could be better delivered. Methods Survey data from a community-based random sample of 12,047 adults aged 30 years and above identified 292 individuals with a self-reported prior diagnosis of diabetes. Data on health seeking practices regarding testing, medical advice, medication and use of non-allopathic medicine were gathered from these 292 individuals. Qualitative semi-structured interviews and focus group discussions with people with diabetes and semi-structured interviews with health workers explored care-seeking behaviour, management of diabetes and perceptions on quality of care. We explore quality of care using the WHO model with the following domains: safe, effective, patient-centred, timely, equitable and efficient. Results People with diabetes who are aware of their diabetic status do seek care but access, particularly to specialist diabetes services, is hindered by costs, time, crowded conditions and distance. Locally available services, while more accessible, lack infrastructure and expertise. Women are less likely to be diagnosed with diabetes and attend specialist services. Furthermore costs of care and dissatisfaction with health care providers affect medication adherence. Conclusion People with diabetes often make a trade-off between seeking locally available accessible care and specialised care which is more difficult to access. It is vital that health services respond to the needs of patients by building the capacity of local health providers and consider practical ways of supporting diabetes care. Trial registration ISRCTN41083256. Registered on 30/03/2016.

Breastfeeding Experiences of Baccalaureate Nursing Students: A Qualitative Study

2020 ◽  
pp. 089033442097998
Author(s):  
Cheryl Langford ◽  
Marcella Gowan ◽  
Monica Haj
Keyword(s):  
Nursing Students ◽  
Health Care Providers ◽  
Baccalaureate Nursing ◽  
Community Support ◽  
Baccalaureate Nursing Students ◽  
Care Providers ◽  
Structured Interviews ◽  
Breastfeeding Support ◽  
Cross Sectional

Background Students returning to school who are breastfeeding face unique challenges. There is limited literature on breastfeeding university students. Several researchers have studied breastfeeding employees in the workplace. Institutions of higher education closely mimic the employment environment. Breastfeeding college students who express their milk while at school share similar challenges to employed mothers. A baccalaureate nursing program is rigorous and little is known about the challenges facing breastfeeding student nurses returning to classes. Research aim To explore the breastfeeding experience of baccalaureate nursing students. Methods Our study was a cross-sectional descriptive qualitative design. Purposive sampling was used to enroll participants ( N = 12). In depth, semi-structured interviews were conducted. Qualitative thematic analysis was used to analyze the data both manually and using Dedoose QDA software. Results An overarching theme of pervasive conflict between the role of the breastfeeding mother and the role of the student nurse surfaced. Three interrelated organizing themes also emerged; challenging, vulnerability, and resilience. Time constraints, self-care versus role demands, and structural accommodations contributed to the challenges. Only one participant indicated a knowledge of her breastfeeding rights. All of the participants expressed gratitude for faculty and community support, regardless of conflicts. Conclusion Breastfeeding participants were both vulnerable and resilient. Faculty may improve experiences through providing specific areas of support. A breastfeeding support policy outlining student rights and faculty responsibilities is needed to educate, guide, and enforce protections. Health care providers may enhance breastfeeding students’ experiences through anticipatory guidance, education, and continued support.

scholarly journals “What is the actual goal of the pathway?”: examining emergency department physician and nurse perspectives on the implementation of a pediatric concussion pathway using the theoretical domains framework

2021 ◽  
Vol 21 (1) ◽  
Author(s):  
Anh Ly ◽  
Roger Zemek ◽  
Bruce Wright ◽  
Jennifer Zwicker ◽  
Kathryn Schneider ◽  
...  
Keyword(s):  
Emergency Department ◽  
Health Care Providers ◽  
Clinical Pathways ◽  
Theoretical Domains Framework ◽  
Local Context ◽  
Emergency Department Physician ◽  
Evidence Based ◽  
Care Providers ◽  
Structured Interviews ◽  
Pediatric Concussion

Abstract Background Multiple evidence-based clinical practice guidelines (CPGs) exist to guide the management of concussion in children, but few have been translated into clinical pathways (CP), which operationalize guidelines into accessible and actionable algorithms that can be more readily implemented by health care providers. This study aimed to identify the clinical behaviours, attitudinal factors, and environmental contexts that potentially influence the implementation of a clinical pathway for pediatric concussion. Methods Semi-structured interviews were conducted from October 2017 to January 2018 with 42 emergency department clinicians (17 physicians, 25 nurses) at five urban emergency departments in Alberta, Canada. A Theoretical Domains Framework (TDF)-informed interview guide contained open-ended questions intended to gather feedback on the proposed pathway developed for the study, as well as factors that could potentially influence its implementation. Results The original 14 domains of the TDF were collapsed into 6 clusters based on significant overlap between domains in the issues discussed by clinicians: 1) knowledge, skills, and practice; 2) professional roles and identity; 3) attitudes, beliefs, and motivations; 4) goals and priorities; 5) local context and resources; and 6) engagement and collaboration. The 6 clusters identified in the interviews each reflect 2–4 predominant topics that can be condensed into six overarching themes regarding clinicians’ views on the implementation of a concussion CP: 1) standardization in the midst of evolving research; 2) clarifying and communicating goals; 3) knowledge dissemination and alignment of information; 4) a team-oriented approach; 5) site engagement; and 6) streamlining clinical processes. Conclusion Application of a comprehensive, evidence-based, and theory-driven framework in conjunction with an inductive thematic analysis approach enabled six themes to emerge as to how to successfullly implement a concussion CP.

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