scholarly journals Pain self-management experiences in haemophilia patients: a qualitative study

2018 ◽  
Vol 5 (1) ◽  
pp. 76-82 ◽  
Author(s):  
Masoume Rambod ◽  
Farkondeh Sharif ◽  
Zahra Molazem ◽  
Kate Khair
Keyword(s):  
Pain Relief ◽  
Qualitative Study ◽  
Lived Experience ◽  
Sense Of Self ◽  
Healthcare Providers ◽  
Phenomenological Approach ◽  
Complementary Therapy ◽  
Self Management ◽  
Self Awareness ◽  
Structured Interviews

Abstract Background: Pain management can prevent long-term burdens in haemophilia patients and improve their quality of life. The present study aimed to describe and interpret pain experiences in haemophilia patients, focusing on pain self-management in their lives. Methods: This was a qualitative study undertaken using a hermeneutic phenomenological approach. The study involved 14 haemophilia patients referred to a haemophilia clinic affiliated to Shiraz University of Medical Sciences in Iran. Data were collected using semi-structured interviews and field notes. Thematic analysis with van Manen’s methodological framework was applied. Data analysis was performed using MAX. QDA qualitative software (2010). Results: Four themes emerged: a sense of self-awareness and recognition of pain and the factors that affect it, the ability to control and self-manage pain, gradually achieving self-efficacy in pain control, and using cognitive and spiritual strategies for pain relief. Conclusions: The study highlighted the essence of the lived experience of pain self-management and generated its linguistic description. By providing complementary therapy interventions, healthcare providers and family members could increase patients’ self-awareness, recognition, ability to self-manage and control pain effectively, and competence in developing cognitive and spiritual strategies for pain relief.

scholarly journals (In)Visible illness: A photovoice study of the lived experience of self-managing rheumatoid arthritis

PLoS ONE ◽  
2021 ◽  
Vol 16 (3) ◽  
pp. e0248151
Author(s):  
Susie Donnelly ◽  
Anthony G. Wilson ◽  
Hasheem Mannan ◽  
Claire Dix ◽  
Laura Whitehill ◽  
...  
Keyword(s):  
Rheumatoid Arthritis ◽  
Lived Experience ◽  
Sense Of Self ◽  
Health Care Systems ◽  
Analysis Data ◽  
Situational Factors ◽  
Self Management ◽  
Management Support ◽  
Structured Interviews ◽  
Care Systems

Background Chronic illnesses, such as Rheumatoid Arthritis (RA), are a growing burden on health care systems worldwide. Self-management emphasises the patient’s central role in managing their illness. This is pertinent given the majority of care is provided by the individual themselves; yet how individuals make sense of self-management in everyday life is largely unseen. Objective The purpose of this study was to capture the strengths and concerns of individuals with RA in self-managing their illness, raise awareness of their lived experience and spark a dialogue among stakeholders. Methods A community-based participatory approach, Photovoice, was adopted. A purposive sample of participants were tasked with taking photographs to represent the challenges and solutions to living with RA. Group workshops and semi-structured interviews were conducted to facilitate reflection, dialogue and analysis. Data analysis followed Braun and Clarke’s thematic analysis. Public exhibitions were held throughout the Autumn of 2019. Results Eight women and three men (n = 11) across suburban and urban regions of Ireland were recruited (mean age 57 years, disease duration 4–21 years). Participants identified four main themes which reflected the lived experience of self-managing RA: (i) I’m Here but I’m Not, (ii) Visible Illness, (iii) Medicine in All its Forms, (iv) Mind Yourself. These themes captured the challenge of reduced agency, limited contribution and participation, and a complex relationship between visible and invisible illness. Solutions focused on improving psychological and emotional resilience, particularly through personal reflection and increased agency. Conclusions Our findings suggest that RA is experienced as a fluid relationship between states of masking and surfacing of illness shaped by contextual and situational factors. Photovoice was a highly effective tool to capture and communicate this complexity. Supporting increased agency among individuals with RA to control the (in)visibility of illness and disability can inform the development of future self-management support.

scholarly journals Using wearables and self-management apps in patients with COPD: a qualitative study

2019 ◽  
Vol 5 (3) ◽  
pp. 00036-2019 ◽  
Author(s):  
Robert C. Wu ◽  
Shiphra Ginsburg ◽  
Tatiana Son ◽  
Andrea S. Gershon
Keyword(s):  
Qualitative Study ◽  
Thematic Analysis ◽  
Mobile Application ◽  
Continuous Monitoring ◽  
Healthcare Providers ◽  
Self Management ◽  
Chronic Obstructive ◽  
Structured Interviews ◽  
Daily Lives ◽  
Obstructive Pulmonary Disease

BackgroundTechnology such as wearable technology and self-management applications could improve the care of patients with chronic obstructive pulmonary disease (COPD) by real-time continuous monitoring, early detection of COPD and improved self-management. However, patients have not been willing to use technology when it is too difficult to use, interferes with their daily lives or threatens their identity, independence and self-care.MethodsWe conducted a qualitative study to determine what patients with COPD would like to see in a wearable device and a mobile application to help manage their condition. Semi-structured interviews were conducted, recorded and transcribed. Thematic analysis was used to identify themes and concepts.ResultsWe interviewed 14 people with COPD with an average age of 69 years. Participants perceived that the technology could improve their ability to manage their condition both in daily life and during exacerbations by connecting how they feel and by knowing their oxygen saturation, heart rate and activity. The technology may help them address feelings of fear and panic associated with exacerbations and may provide reassurance and connectedness. Some people with COPD wanted their healthcare providers to have access to their data, while others were concerned about inundating them with too much information. Of note, people wanted to maintain control of the information; to make connections with the data, but also in order to be alerted when a possible exacerbation occurs.ConclusionPatients perceived significant potential for wearables and apps to help manage their condition.

scholarly journals The Perceived Social Support by Iranian Women with Breast Cancer: A Qualitative Study

2021 ◽  
Author(s):  
Leila Mokhtari ◽  
Abdollah Khorami Markani ◽  
Hamid Reza Khalkhali ◽  
Aram Feizi
Keyword(s):  
Breast Cancer ◽  
Social Support ◽  
Qualitative Study ◽  
Lived Experience ◽  
Qualitative Content Analysis ◽  
Healthcare Providers ◽  
Well Being ◽  
Medical Sciences ◽  
Structured Interviews ◽  
The Family

Abstract Background: Social support has an importnat role in improving health outcomes and is considered as one of the crucial aspects of the modern care in cancer patients. Therefore this article aims at discovering and describing the dimensions of social support based on the lived experience of women suffering from breast cancer.Methods: In this qualitative study, 22 women with breast cancer were selected through purposive sampling from 7 hospitals affiliated to Urmia University of Medical Sciences. The data were collected through semi-structured interviews and were analyzed by the Conventional Qualitative Content Analysis and Graneheim’s and Lundman’s (2004) approach, using MAXQDA software, version 10.Results: After completion of the analyzing process, 6 categories were appeared including “creating an empathic atmosphere by family and community”, “creating a safe communication network for the patient”, “adaption to disease”, “giving meaning to life”, “the feeling of satisfaction with the healthcare providers for fulfilling their role”, and “accepting the support and help of family and friends in fighting the disease”. Conclusion: According to the findings, good social support during the illness can result in the spiritual, mental, and physical well-being of the patients and is one of the most effective factors in fighting the disease and feeling of recovery. The findings of this study can be used to develop plans to help the patients to achieve more support from the family, healthcare providers and the community and even providing the required supportive care for this group of women.

scholarly journals Exploring the Experiences of Iranian Women Regarding Obesity Self-Management: A Qualitative Study

2019 ◽  
Vol 7 (14) ◽  
pp. 2377-2383
Author(s):  
Omolhoda Kaveh ◽  
Hamid Peyrovi
Keyword(s):  
Qualitative Study ◽  
Comparative Method ◽  
Critical Role ◽  
Healthcare Providers ◽  
Critical Factor ◽  
Self Management ◽  
Iranian Women ◽  
Structured Interviews ◽  
Main Category ◽  
Care Plans

BACKGROUND: Despite the high and growing prevalence of obesity in Iran and a variety of interventions by the healthcare providers control the problem, and it is still a prevalent health problem among Iranian women. AIM: The aim of this study is to explore the perspective of obese Iranian women in the process of self-management regarding the facilitating factor in self-management of obesity. METHODS: In a qualitative study, the participants were selected through purposeful sampling, and the data were collected using semi-structured interviews and focus group (n = 25) between July 2017 and September 2018. All the interviews were transcribed verbatim and the data were analysed using constant comparative method. RESULTS: Supporting the umbrella was the main category found in the present study. The participating obese individuals found “support” as the main factor with an outstanding effect on motivating, incentivising and keeping diet in long-term. This category contains subcategories: self-help; family, friends, and peers’ support; and medical team’s support. CONCLUSION: The findings suggested the critical role of support in obesity self-management process. This critical factor improves our perception of the multi-aspect and complicated nature of obesity self-management. Moreover, policymakers and providers of health services can utilise this finding in the design of care plans with higher chance of success.

scholarly journals Facilitators and Barriers of Managing Patients with Multiple Chronic Conditions in the Community: A Qualitative Study

2020 ◽  
Author(s):  
Kah Mun Foo ◽  
Meena Sundram ◽  
Helena Legido-Quigley
Keyword(s):  
Qualitative Study ◽  
Chronic Conditions ◽  
Resource Constraints ◽  
Healthcare Providers ◽  
Policy Formulation ◽  
Care Quality ◽  
Self Management ◽  
Multiple Chronic Conditions ◽  
Structured Interviews ◽  
Facilitators And Barriers

Abstract Background: Approximately one-third of all adults worldwide are diagnosed with multiple chronic conditions (MCCs). The literature has identified several challenges facing providers and patients coping with managing MCCs in the community, yet few studies have considered their viewpoints in combination. A qualitative study involving healthcare providers and users was thus conducted to examine facilitators and barriers of managing patients with MCCs in the community in Singapore.Methods: This study involves 26 semi-structured interviews with 10 physicians, 2 caregivers and 14 patients seeking treatment in the polyclinics that provide subsidised primary care services. Topic guides were developed with reference to the literature review, Chronic Care Model (CCM) and framework for patient-centred access to healthcare.Results: Despite the perceived affordability and availability of the support system, some patients still encountered financial difficulties in managing care. These include inadequacy of the nation-wide medical savings scheme to cover outpatient treatment and medications. Half of healthcare users did not know where to seek help. While patients could access comprehensive services in polyclinics, those who did not visit the clinics might not receive timely care. Furthermore, patients reported long consultation waiting time.Physicians were able to propose and drive quality improvement projects to improve care quality. However, there were challenges to delivering safe and quality care with limited consultation duration due to the need to manage high patient load and waiting time, inadequate communication with specialists to coordinate care, and resource constraints in managing complex patients.Although providers could equip patients with self-management and lifestyle-related guidelines, patients’ actions are influenced by multiple factors, including work requirements, beliefs and environment.Conclusions: There were barriers on care access, delivery and self-management. It is crucial to adopt a whole-of-society approach involving individuals, community, institutions and policymakers to improve and support MCC management. This study has also highlighted the importance of considering the different viewpoints of healthcare providers and users in policy formulation and community care planning.

scholarly journals NICU and postpartum nurse perspectives on involving fathers in newborn care: a qualitative study

BMC Nursing ◽  
2021 ◽  
Vol 20 (1) ◽  
Author(s):  
Katharine W. Buek ◽  
Dagoberto Cortez ◽  
Dorothy J. Mandell
Keyword(s):  
Qualitative Study ◽  
Father Involvement ◽  
Perinatal Care ◽  
Healthcare Providers ◽  
Newborn Care ◽  
Small Scale ◽  
Structured Interviews ◽  
Provider Attitudes ◽  
Attitudes And Practices ◽  
Sense Of Efficacy

Abstract Background Perinatal care nurses are well positioned to provide the education and support new fathers need to navigate the transition to fatherhood and to encourage positive father involvement from the earliest hours of a child’s life. To effectively serve fathers in perinatal settings, it is important to understand the attitudes, beliefs, and behaviors of healthcare providers that may encourage and engage them, or alternatively alienate and discourage them. Methods This qualitative study involved structured interviews with ten NICU and postpartum nurses from hospitals in two large Texas cities. The interview protocol was designed to elicit descriptive information about nurses’ attitudes and beliefs, sense of efficacy and intention for working with fathers, as well as their father-directed behaviors. Nurses were recruited for the study using a purposive sampling approach. Interviews were conducted by telephone and lasted approximately 25 to 35 min. Data were analyzed using a qualitative descriptive approach. Results Overall, study participants held very positive subjective attitudes toward fathers and father involvement. Nevertheless, many of the nurses signaled normative beliefs based on race/ethnicity, gender, and culture that may moderate their intention to engage with fathers. Participants also indicated that their education as well as the culture of perinatal healthcare are focused almost entirely on the mother-baby dyad. In line with this focus on mothers, participants comments reflected a normative belief that fathers are secondary caregivers to their newborns, there to help when the mother is unavailable. Conclusions Nurse attitudes and practices that place mothers in the role of primary caregiver may be interpreted by fathers as excluding or disregarding them. Further research is needed to validate the results of this small-scale study, and to assess whether and how provider attitudes impact their practices in educating and engaging fathers in newborn care.

Risk perception on the labour ward: A mixed methods study

2021 ◽  
Vol 26 (2) ◽  
pp. 56-63
Author(s):  
Claire McCarthy ◽  
Sarah Meaney ◽  
Marie Rochford ◽  
Keelin O’Donoghue
Keyword(s):  
Mixed Methods ◽  
Lived Experience ◽  
Healthcare Providers ◽  
Emergency Obstetric Care ◽  
Obstetric Care ◽  
Daily Basis ◽  
Mixed Methods Study ◽  
Structured Interviews ◽  
Staff Support ◽  
Staff Wellbeing

Healthcare providers commonly experience risky situations in the provision of maternity care, and there has been increased focus on the lived experience in recent years. We aimed to assess opinions on, understanding of and behaviours of risk on the LW by conducting a mixed methods study. Staff working in a LW setting completed a descriptive questionnaire-based study, followed by qualitative structured interviews. Statistical analysis was performed with SPSS on quantitative data and thematic analysis performed on qualitative data. Nearly two thirds of staff (64%; 73/114) completed the questionnaire, with 56.2% (n = 47) experiencing risk on a daily basis. Experiencing risk evoked feelings of apprehension (68.4%; n = 50) and worry (60.2%; n = 44) which was echoed in the qualitative work. Structured clinical assessment was utilised in risky situations, and staff described “ going on autopilot” to manage these situations. A large number of respondents reflected on their provision of care following an adverse event (87.7%; n = 64). Debriefing was mentioned as an important practice following such events by all respondents. This study describes the negative terminology prevailing in emergency obstetric care. These experiences can have a profound impact on staff. Risk reduction strategies and the provision of increased staff support and training are crucial to improve staff wellbeing in stressful scenarios.

Complicated grief knowledge and practice: a qualitative study of general practitioners in Ireland

2021 ◽  
pp. 1-6
Author(s):  
Abiola Muhammed ◽  
Anne Dodd ◽  
Suzanne Guerin ◽  
Susan Delaney ◽  
Philip Dodd
Keyword(s):  
Qualitative Study ◽  
General Practitioners ◽  
Current Knowledge ◽  
Complicated Grief ◽  
Phenomenological Approach ◽  
Structured Interviews ◽  
Relevant Research ◽  
Loved One ◽  
Knowledge And Practice ◽  
Purposive Sample

Objective: Complicated grief is a debilitating condition that individuals may experience after losing a loved one. General practitioners (GPs) are well positioned to provide patients with support for grief-related issues. Traditionally, Irish GPs play an important role in providing patients with emotional support regarding bereavement. However, GPs have commonly reported not being aptly trained to respond to bereavement-related issues. This study explores GPs’ current knowledge of and practice regarding complicated grief. Methods: A qualitative study adopting a phenomenological approach to explore the experiences of GPs on this issue. Semi-structured interviews were carried out with a purposive sample of nine GPs (five men and four women) in Ireland. Potential participants were contacted via email and phone. Interviews were audio-recorded, transcribed and analysed using Braun & Clarke’s (2006) model of thematic analysis. Results: GPs had limited awareness of the concept of complicated grief and were unfamiliar with relevant research. They also reported that their training was either non-existent or outdated. GPs formed their own knowledge of grief-related issues based on their intuition and experiences. For these reasons, there was not one agreed method of how to respond to grief-related issues reported by patients, though participants recognised the need for intervention, onward referral and review. Conclusions: The research highlighted that GPs felt they required training in complicated grief so that they would be better able to identify and respond to complicated grief.

scholarly journals Young adults’ perceptions of living with atopic dermatitis in relation to the concept of self-management: a qualitative study

BMJ Open ◽  
2021 ◽  
Vol 11 (6) ◽  
pp. e044777
Author(s):  
Susanne Lundin ◽  
Marina Jonsson ◽  
Carl-Fredrik Wahlgren ◽  
Emma Johansson ◽  
Anna Bergstrom ◽  
...  
Keyword(s):  
Young Adults ◽  
Atopic Dermatitis ◽  
Qualitative Study ◽  
Healthcare Providers ◽  
Transition Process ◽  
Population Based ◽  
Self Management ◽  
School Age ◽  
Perceived Availability ◽  
Semistructured Interviews

ObjectivesLearning to take control of one’s health is an important part of the transition from adolescence to adulthood. This study aimed to explore young adults’ perceptions of living with atopic dermatitis (AD) in relation to the concept of self-management.DesignA qualitative study with an inductive approach was performed through semistructured interviews (n=15). The interviews were recorded, transcribed verbatim and analysed with systematic text condensation.ParticipantsYoung adults (mean age 23,4 years) with persistent AD in a longitudinal population-based birth cohort. To capture experience of living with persistent AD (preschool/school-age onset) of different severity (mild to severe/very severe), a purposive selection was performed. In total, 15 young adults were included. Persistent AD (preschool/school-age onset) was defined as dry skin in combination with itchy rash of typical localisation in the 12 months preceding the 16-year and the 24-year follow-ups. Severity was self-assessed using the Patient Oriented Eczema Measure.ResultsDespite having experience of AD since childhood, the respondents expressed uncertainty about treatment and how it affected their bodies. Their uncertainties and feelings affected how they used topical corticosteroids. The respondents emphasised that they perceived availability of healthcare and knowledge about treatment of AD among healthcare providers to be limited. The participants did not state any experiences of support to self-management from healthcare, which affect young adults’ possibilities to take full control of their AD care.ConclusionsYoung adults with preschool/school-age onset of AD are unsure how to treat and manage the disease. One explanation may be insufficient transition process.

scholarly journals Resiliency, the Lived Experience of Patients Undergoing Hematopoietic Stem Cell Transplantation

2019 ◽  
Author(s):  
Ali Karimi Rozveh ◽  
Alireza Nikbakht Nasrabadi ◽  
Shahrzad Ghiyasvandian ◽  
Leila Sayadi ◽  
Mohammad Vaezi ◽  
...  
Keyword(s):  
Stem Cell ◽  
Stem Cell Transplantation ◽  
Lived Experience ◽  
Cell Transplantation ◽  
Phenomenological Approach ◽  
Main Theme ◽  
Structured Interviews ◽  
Hematopoietic Stem ◽  
Hematopoetic Stem Cell ◽  
Hematopoetic Stem Cell Transplantation

Background: Hematopoetic stem cell transplantation is considered as a standard treatment for cancer patients to stay hopeful toward treatment outcome. However, these patients experience many complications which might affect different aspects of their life. The aim of this study was to investigate the lived experience of patients after hematopoetic stem cell transplantation and introduce supportive care strategies. Materials and Methods: In this study, Van Manen’s Hermeneutic phenomenological approach was used. Eleven patients (7 males and 4 females) were chosen by targeted sampling from visitors of Shariati Hospital’s outpatient clinic. Semi-structured interviews were conducted and the final data were analyzed by MAXQDA 10 software. Results: Data analysis revealed that the main theme was resiliency with two sub-themes of “not surrendering to disease” and “feeling closer to God”. Conclusion: Participants declared that transplantation was like a second chance for life and considered this opportunity as a gift from God to overcome their disease. According to our findings, spirituality aids can help patients control the disturbances following HSCT and health professionals can use constructive strategies to support patients with spiritual needs.

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