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 Participants’ experiences of and perceived value regarding different support types for long-term condition self-management programmes

2019 ◽  
pp. 174239531986943 ◽  
Author(s):  
Stephen Hughes ◽  
Sophie Lewis ◽  
Karen Willis ◽  
Anne Rogers ◽  
Sally Wyke ◽  
...  
Keyword(s):  
Lived Experience ◽  
Professional Training ◽  
Self Management ◽  
Chronic Obstructive ◽  
Management Support ◽  
Structured Interviews ◽  
Obstructive Pulmonary Disease ◽  
Term Condition ◽  
Group Programme

Objectives Health professional-led group programmes are a common form of long-term condition self-management support. Much research has focused on clinical outcomes of group participation, yet there is limited research on how group participants perceive and experience the support they receive. We aim to identify the different types of support that participants receive from both facilitators and other participants, and how they value this support. Methods Semi-structured interviews were conducted with 20 participants taking part in a self-management group programme for a long-term condition (obesity, type 2 diabetes or chronic obstructive pulmonary disease). Data pertaining to support types were deductively identified through a social support framework prior to interpretive thematic analysis. Results Participants identified information and emotional support from both facilitators and other participants as complementary yet distinct. Facilitators’ support came from professional training and other participants’ support reflected the contextual, lived experience. Professional interactions were prioritised, constraining opportunities for participant–participant support to be received and exchanged. Discussion We identified a key gap in how self-management support is enacted in groups. Engaging participants to share experiential knowledge will make group support more relevant and mutually beneficial to participants living with a long-term condition.

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 Are We Transitioning Toward Person-centered Practice on Self-management Support? An Explorative Case Study Among Rheumatology Outpatient Clinic Nurses in Norway

2021 ◽  
Vol 7 ◽  
pp. 237796082110374
Author(s):  
Heike Fischer ◽  
Kjersti Grønning
Keyword(s):  
Outpatient Clinic ◽  
Health Care Systems ◽  
Self Management ◽  
Management Support ◽  
Systematic Analysis ◽  
The Core ◽  
Semistructured Interviews ◽  
Care Systems ◽  
Rheumatology Outpatient

Introduction There are only a few studies investigating nurses’ views on self-management in the care of patients with rheumatic diseases. Objective The aim of this study is to explore how Norwegian rheumatology outpatient nurses describe their ways of supporting patients’ self-management focusing on the core dimensions of person-centered self-management support. Methods Ten individual semistructured interviews with rheumatology outpatient nurses were conducted in Norway from March to September 2017. The interviews were audiorecorded and transcribed verbatim. NVIVO was used to support a systematic analysis of themes and patterns. Results Nurses’ views on self-management support fell into three approaches; (1) narrowly biomedically orientated, (2) biomedically and holistic, and (3) person-centered. The nurse's views of self-management support varied and did not fully align with the core dimensions of person-centered practice. Conclusion The findings indicate that the biomedical paradigm continues to influence Norwegian rheumatology outpatient clinic nurses’ approach to self-management support. If person-centered principles of self-management support are to be translated into standard nursing practice, including identifying and supporting patient-defined self-management goals and processes, there is a need to challenge established structures in health care systems.

Chronic condition self-management is a social practice

2021 ◽  
pp. 144078332110380
Author(s):  
Marika Franklin ◽  
Karen Willis ◽  
Sophie Lewis ◽  
Lorraine Smith
Keyword(s):  
Health Care ◽  
Lived Experience ◽  
Social Life ◽  
Social Practice ◽  
Health Care Systems ◽  
Self Management ◽  
Theory Of Practice ◽  
Care Systems ◽  
The Impact ◽  
Professional Interactions

Self-management is widely promoted in Western health care policies as a way to address the impact of increasing rates of chronic conditions on health care systems. Mostly informed by psychological theories, self-management frameworks and interventions tend to target individual behaviours as demarcated from the many aspects of social life shaping these behaviours. Using Bourdieu’s theory of practice, we develop four propositions for a relational and socially situated (re)conceptualisation of self-management. First, self-management is a field with its own distinctive logics of practice; second, self-management goals are social practices, emerging through co-constituted patient–professional interactions; third, self-management is energised by legitimised capital; and fourth, what goals feel possible are shaped through embodied knowledge and lived experience (habitus), linked to capital. Collectively these propositions enable focus on both the meanings and resources patients and professionals bring to self-management, along with the dynamic and relational ways goals are produced through patient–professional interactions within the broader field of health care.

Mothers Caring for Adult Children With Substance Use Disorder: Understanding Lived Experience

2021 ◽  
pp. 084456212110374
Author(s):  
Oona St-Amant ◽  
Jasna K. Schwind
Keyword(s):  
Substance Use ◽  
Lived Experience ◽  
Family Involvement ◽  
Substance Use Disorder ◽  
Adult Children ◽  
Service Provision ◽  
Health Care Systems ◽  
Anticipatory Grief ◽  
Care Systems ◽  
Mothers Experiences

Background Most persons with substance use disorder (SUD) live in family settings. In the absence of adequate mental health services, mothers are often called upon to provide care for their adult children with SUD. Despite positive outcomes such as decreased rates of hospitalization associated with family involvement, mothers are often stigmatized within the health care systems as contributors to trauma and/or family dysfunction. Purpose The purpose of this study is to explore mothers’ lived experience of caring for adult children with SUD. Method Guided by critical feminist theory, this study used interpretive descriptive qualitative research design to identify patterns within mothers’ experiences for practical relevance and application to service provision. Results The findings yielded in this study identified mothers’ experiences as: longing for wellness, identity as loving mother, loss, anticipatory grief, shame and blame and feeling excluded from services. Ultimately, the findings from this study extend the limited research to date on mothers’ experiences of stigma, especially when they are blamed for their child’s illness. Conclusions Findings from this study advocate for family-centered approaches that attend to mothers’ unique experience, from their standpoint, and offer recommendations for change to service provision.

The making and sustaining of leaders in health care

2019 ◽  
Vol 33 (2) ◽  
pp. 241-262 ◽  
Author(s):  
Terry J. Boyle ◽  
Kieran Mervyn
Keyword(s):  
Health Care ◽  
Community Health ◽  
Health Care Services ◽  
Health Care Systems ◽  
Structured Interviews ◽  
Healthcare Provision ◽  
Triple Aim ◽  
Content Type ◽  
Care Services ◽  
Care Systems

Purpose Many nations are focussing on health care’s Triple Aim (quality, overall community health and reduced cost) with only moderate success. Traditional leadership learning programmes have been based on a taught curriculum, but the purpose of this paper is to demonstrate more modern approaches through procedures and tools. Design/methodology/approach This study evolved from grounded and activity theory foundations (using semi-structured interviews with ten senior healthcare executives and qualitative analysis) which describe obstructions to progress. The study began with the premise that quality and affordable health care are dependent upon collaborative innovation. The growth of new leaders goes from skills to procedures and tools, and from training to development. Findings This paper makes “frugal innovation” recommendations which while not costly in a financial sense, do have practical and social implications relating to the Triple Aim. The research also revealed largely externally driven health care systems under duress suffering from leadership shortages. Research limitations/implications The study centred primarily on one Canadian community health care services’ organisation. Since healthcare provision is place-based (contextual), the findings may not be universally applicable, maybe not even to an adjacent community. Practical implications The paper dismisses outdated views of the synonymity of leadership and management, while encouraging clinicians to assume leadership roles. Originality/value This paper demonstrates how health care leadership can be developed and sustained.

scholarly journals The complexity of food for people with multiple long-term health conditions

2018 ◽  
Vol 10 (3) ◽  
pp. 186 ◽  
Author(s):  
Helen Francis ◽  
Jenny Carryer ◽  
Jill Wilkinson
Keyword(s):  
Health Conditions ◽  
Self Management ◽  
Management Support ◽  
Cultural Significance ◽  
Structured Interviews ◽  
Qualitative Case Studies ◽  
Clinical Encounters ◽  
Nutritional Advice ◽  
Primary Care Clinicians

ABSTRACT INTRODUCTION The prevalence of long-term health conditions (LTCs) continues to increase and it is normal for people to have several. Lifestyle is a core feature of the self-management support given to people with LTCs, yet it seems to fail to meet their needs. From a larger study exploring the experiences of this group, this paper reports on the role of food and mealtimes, and the effect of the nutritional advice on the lives of people with several LTCs. METHODS The experiences of 16 people with several advanced LTCs were explored using multiple qualitative case studies. Over an 18-month period, contact with participants included monthly conversations, two longer, semi-structured interviews and one interview with their primary care clinicians. The data were analysed inductively using thematic analysis. RESULTS There was profound social, psychological and cultural significance of food to the participants. These aspects of food were then described using the Whare Tapa Wha model of health. The approach to food and nutrition participants experienced in health care was closely associated with conventional weight management. They found this advice largely irrelevant and therefore ineffective. DISCUSSION The pressure people with several LTCs experience during clinical encounters has perverse effects on wellbeing and reinforces an overall sense of failure. This research challenges the assumption that all people have the will, agency and income to follow the advice they receive about nutrition and exercise. Considering people’s needs using the Whare Tapa Wha model of health offers clinicians a framework to re-conceptualise the core features of self-management support and provide realistic, compassionate care that will optimise the quality of life for people with multiple LTCs.

The lived experience of Buddhist-oriented religious coping in late life: Buddhism as a cognitive schema

2019 ◽  
pp. 135910531988274 ◽  
Author(s):  
Jianbin Xu
Keyword(s):  
Lived Experience ◽  
Religious Coping ◽  
Interpretative Phenomenological Analysis ◽  
Meaning Making ◽  
Analysis Data ◽  
Cognitive Schema ◽  
Structured Interviews ◽  
Beliefs And Practices ◽  
Coping Methods ◽  
Mantra Meditation

This article explores how older Buddhists in Singapore use Buddhist beliefs and practices to cope with stress. Semi-structured interviews with six older Buddhists were conducted. Interview transcripts were analyzed using interpretative phenomenological analysis. Data analysis identified three ways of Buddhist-oriented religious coping: meaning-making coping, meditative coping, and ego-transcendence coping. In meaning-making coping, participants employed the notions of karma and duḥkha to make sense of stress. Participants’ meditative coping methods included visualization and mantra meditation. During ego-transcendence coping, participants drew on the notion of non-attachment to the ego. The three ways of Buddhist-oriented religious coping can be examined in a Buddhism-as-cognitive-schema perspective.

Dancing With Death in the Dust of Coronavirus: The Lived Experience of Iranian Nurses

2020 ◽  
Vol 26 (4) ◽  
pp. e82-e89
Author(s):  
Fatemeh Bahramnezhad ◽  
Parvaneh Asgari
Keyword(s):  
Health Care ◽  
Lived Experience ◽  
Health Care Providers ◽  
Health Care Systems ◽  
Phenomenological Approach ◽  
Care Providers ◽  
Care Systems ◽  
Interpretative Phenomenological Approach ◽  
Communication Challenges ◽  
Novel Coronavirus

The novel coronavirus disease (COVID-19) pandemic as a public health emergency poses dramatic challenges for health-care systems. The experiences of health-care workers are important in planning for future outbreaks of infectious diseases. This study explored the lived experiences of 14 nurses in Tehran, Iran caring for coronavirus patients using an interpretative phenomenological approach as described by Van Manen. In-depth interviews were audio-recorded between March 10 and May 5, 2020. The essence of the nurses' experiences caring for patients with COVID-19 was categorized as three themes and eight subthemes: (a) Strong pressure because of coronavirus: initial fear, loneliness, communication challenges, exhaustion. (b) Turn threats into opportunities: improvement of nursing image, professional development. (c) Nurses' expectations: expectations of people, expectations of government. The findings of this study showed that identifying the challenges and needs of health-care providers is necessary to create a safe health-care system and to prepare nurses and expand their knowledge and attitudes to care for patients in new crises in the future.

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