scholarly journals “Living with a Stoma”: Exploring the Lived Experience of Patients with Permanent Colostomy

2021 ◽  
Vol 18 (16) ◽  
pp. 8512
Author(s):  
Areti Stavropoulou ◽  
Dimitrios Vlamakis ◽  
Evridiki Kaba ◽  
Ioannis Kalemikerakis ◽  
Maria Polikandrioti ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Lived Experience ◽  
Organizational Support ◽  
Traumatic Event ◽  
Depth Information ◽  
Structured Interviews ◽  
Interpretive Phenomenology ◽  
Permanent Colostomy ◽  
Significant Life

Introduction: Living with a permanent colostomy brings severe changes in patients’ lives. The general health status as well as the personal, social and professional life of patients are significantly affected. Aim: The aim of the present study was to investigate the lived experience of patients undergoing permanent colostomy. Material and Methods: A qualitative research design based on interpretive phenomenology was carried out. Semi-structured interviews were conducted as the data collection method to obtain in-depth information regarding the research topic. The study sample consisted of eight (8) patients who had undergone a permanent colostomy. The data analysis was performed by the method of content analysis. Results: From the analysis of the data, three main themes emerged, namely: (A) Experiencing a traumatic event; (B) Living a new reality; (C) Efforts to improve quality of life. Five subthemes were formulated which were encompassed within the respective main themes accordingly. Conclusion: Patients with permanent colostomy face significant life changes that are experienced in a traumatic way. Issues such as autonomy, family and organizational support, self-management and empowerment can significantly improve the patients’ quality of life. Further research, regarding caregivers’ experience, improved community nursing care as well as nurses’ views on the needs of colostomy patients and their families, is suggested.

scholarly journals Lived Experience of Patients Undergoing Hemodialysis: Quality of Life Perspective

2016 ◽  
Vol 3 (2) ◽  
Author(s):  
Mrs. Rohini. T ◽  
Dr. Punitha. V. Ezhilarasu
Keyword(s):  
Quality Of Life ◽  
Lived Experience ◽  
Structured Interviews ◽  
Van Manen ◽  
Related Quality ◽  
Health Related ◽  
Stage Renal Disease ◽  
End Stage ◽  
Esrd Patients

There is growing recognition of Health-Related Quality of Life (HRQOL) issues in End Stage Renal Disease (ESRD) patients undergoing Hemodialysis (HD). The aim of the present study was to explore the lived experience of Quality of Life (QOL) among patients undergoing Hemodialysis. The study involved a qualitative approach that used an interpretive hermeneutic phenomenology based on Van Manen’s method. The sample included seven patients undergoing Hemodialysis in two selected hospitals at Ernakulam district in Kerala. They were recruited by purposive sampling. Data were collected using semi-structured interviews. The thematic analysis followed the six steps delineated by Max Van Manen and four themes emerged. They were crestfallen life (3 sub themes; hard pressed life, deserted life and abounding losses); support and comfort; accompanying death and unfulfilled wishes. The findings shed light on the lived experience of QOL that has not yet been researched in an Indian scenario. The generated knowledge can be used by health professionals including nurses to help patients undergoing HD lead a life with better quality of life.

Living with ureteric stents: a phenomenological study

2019 ◽  
Vol 28 (9) ◽  
pp. S29-S37
Author(s):  
Therese Kelly ◽  
Marcella Horrigan Kelly
Keyword(s):  
Quality Of Life ◽  
Lived Experience ◽  
Voiding Dysfunction ◽  
Phenomenological Study ◽  
Body Burden ◽  
Interpretive Phenomenology ◽  
Ureteric Stent ◽  
Ureteric Stents ◽  
Patient’S Experience

Background: patients with ureteric stents (JJ stents) have reported symptoms such as voiding dysfunction, incontinence, depression and sexual dysfunction, which have impacted on their quality of life, since the procedure was first described by Zimskind in 1967. Aim: the aim of this study was to enhance understanding of the lived experience of having a ureteric stent. Method: the research design used was hermeneutic interpretive phenomenology, underpinned by Heidegger's interpretive phenomenology. Findings: this phenomenological study found that ureteric stents have an impact on patients' quality of life. The five themes that emerged were: disruption to activities of daily life, burden on my physical body, burden on my mind, influence of time and influence of others. Conclusion: urological nurses can enhance the patient's experience of living with a ureteric stent by educating patients regarding stent symptoms and management, giving psychological support and advocating for the patient with adverse stent-related symptoms.

Psychosocial distress in women diagnosed with gynecological cancer

2016 ◽  
Vol 23 (7) ◽  
pp. 893-904 ◽  
Author(s):  
Narelle Warren ◽  
Deirdre M Melrose ◽  
Joanne E Brooker ◽  
Sue Burney
Keyword(s):  
Quality Of Life ◽  
Social Support ◽  
Protective Factors ◽  
Lived Experience ◽  
Cancer Patients ◽  
Gynecological Cancer ◽  
Psychosocial Distress ◽  
Structured Interviews

Many women with gynecological cancer report psychosocial distress, and clarification of the risks, vulnerabilities, and protective factors is required. The aim of this study was to investigate the lived experience of gynecological cancer patients and to understand the factors that underlie psychosocial distress. Semi-structured interviews with seven women diagnosed with gynecological cancer revealed the role of social support, or its absence, selective withholding of information, and existential loneliness in women’s experience of distress. Social support provided a buffer against distress, while feelings of alienation and being alone exacerbated distress. Interventions to address these concerns may lead to improved quality of life for this patient group.

scholarly journals Treating for stability: an ethnographic study of aspirations and limitations in haemophilia treatment in Europe

2020 ◽  
Vol 7 (1) ◽  
pp. 165-172
Author(s):  
Thomas Hughes ◽  
Mikkel Brok-Kristensen ◽  
Yosha Gargeya ◽  
Anne Mette Worsøe Lottrup ◽  
Ask Bo Larsen ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Lived Experience ◽  
Health Care Professionals ◽  
Large Scale ◽  
Participant Observation ◽  
Field Research ◽  
Ethnographic Study ◽  
Theory Approach ◽  
Structured Interviews

AbstractBackgroundRecent improvements in approaches to treatment have opened a window of opportunity to redefine and expand the goals of treatment in haemophilia This article explores treatment culture in light of these improvements and its potential impact on the range of possibilitis in the lived experience of haemophilia.AimsThe aim of this article is to further investigate findings related to how health care professionals (HCPs) approach haemophilia treatment and care, one of the main themes identified in an ethnographic study of the everyday life of people with haemophilia (PwH). This large-scale study investigated PwH's beliefs and experiences related to their condition, their treatment, and their personal ways of managing the condition.MethodsThe study used ethnographic research methods. Five haemophilia experts helped frame the research design by providing historical and disease area context prior to the initation of field research. In the field, study researchers collected data through 8–12 hours of participant observation, semi-structured interviews, written exercises, facilitated group dialogues, and on-site observations of the interactions of PwH with friends, family, and HCPs. Study researchers also conducted on-site observation at haemophilia treatment centres (HTCs) and interviewed HCPs. The study employed a multi-tiered grounded theory approach and combined data were analysed using techniques such as inductive and deductive analysis, cross-case analysis, challenge mapping, and clustering exercises. This article explores findings related specifically to how HCPs approach haemophilia treatment and care, and is thus focused on a subset of the data from the study.ResultsFifty-one PwH in Italy, Germany, Spain, UK, and Ireland were interviewed and followed in their daily lives. Eighteen HCPs from seven HTCs were interviewed, and on-site observation was undertaken at six of the HTCs. Most haematologists in the study ‘treated for stability’, rather than to guide PwH to overcome limitations. ‘Treating for stability’ here refers to an approach to haemophilia care that focuses on measuring success in terms of annual bleed rate, instilling a focus on mitigating risk, rather than an approach that allows PwH to overcome the limitations they face due to their condition. However, some haematologists had moved beyond treating for stability to instead treat for possibilities, enabling a better quality of life for PwH.ConclusionsThese results suggest that a culture of ‘treating for stability’ could be limiting progress in expanding the goals of treatment in haemophilia. Expanded metrics of success, more flexible approaches to treatment, and higher ambitions on behalf of PwH may be needed in treatment and care, in order for PwH to fully benefit from treatment advances and to increase their quality of life.

scholarly journals 4580 Development of a play-based coaching intervention to improve quality of life and wellbeing for mothers with cancer and their young children

2020 ◽  
Vol 4 (s1) ◽  
pp. 27-27
Author(s):  
Rosa Roman-Oyola ◽  
Anita Bundy ◽  
Eida Castro ◽  
Osiris Castrillo
Keyword(s):  
Quality Of Life ◽  
Young Children ◽  
Depression Symptoms ◽  
Improve Quality ◽  
Structured Interviews ◽  
Yield Data ◽  
Implementation Phase ◽  
Coaching Intervention ◽  
Phase 1B

OBJECTIVES/GOALS: Mothers with cancer who have young children experience life disruptions when treatment procedures limit mother-child interactions. This study proposes the development of an intervention combining the Coaching approach with the Model of Playfulness to improve Quality of Life (QoL) and wellbeing of these patients and their young children. METHODS/STUDY POPULATION: This embedded mixed method study will be guided by the two initial phases of the ORBIT Model for the development of behavioral interventions for patients with chronic diseases. Participants will be mothers in the post-acute treatment stage of cancer (n = 6) and their children who are between 2 years and a half and 6 years, 11 months. Phase 1A, Definition, builds on qualitative data from a concurrent study exploring the experiences of mothers with cancer playing with their young children. As part of this phase, we will develop a play-based coaching intervention. In Phase 1B, Refinement, we will employ in-depth semi-structured interviews and standardized tools to evaluate acceptability of the intervention and preliminary outcomes. This will serve to further refine the intervention. RESULTS/ANTICIPATED RESULTS: Phase 1A will yield a plan for the intervention and data to enhance its initial implementation. Phase 1B will yield data, from the perspective of the mothers, about acceptability of the intervention procedures (e.g., delivery strategy, place for the intervention, time devoted, and outcome measures). This will enable modifications to the intervention. Additionally, Phase IB will yield preliminary data from specific QoL and wellbeing measures. For the mother, data about anxiety and depression symptoms, stress levels, and parental self-efficacy; for the child, emotional and behavioral indicators; for both: playfulness. DISCUSSION/SIGNIFICANCE OF IMPACT: This study entails the development of an intervention to enhance QoL and wellbeing of mothers with cancer and their children. Play moments as the centerpiece of the intervention, represent an innovative approach. Findings will guide the design of future feasibility studies to advance the development of this outcome driven intervention.

scholarly journals The Role of Gender in the Transition to Driving Cessation in Persons With Dementia

2020 ◽  
Vol 4 (Supplement_1) ◽  
pp. 302-303
Author(s):  
Stephanie Yamin ◽  
Roxana Manoiu ◽  
Gary Naglie ◽  
Sarah Sanford ◽  
Elaine Stasiulis ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Older Adults ◽  
Emotional Responses ◽  
Life Transition ◽  
Emotional Wellbeing ◽  
Driving Cessation ◽  
Significant Life ◽  
Ability To Drive

Abstract Driving often provides a sense of independence, quality of life and emotional wellbeing. For older adults living with dementia, driving cessation eventually becomes inevitable. Driving cessation has been shown to negatively impact older adults’ mobility and, consequently, quality of life. Caregivers of persons with dementia (PWD) who have ceased driving are also impacted as they often become responsible for meeting the mobility needs of PWD and they provide emotional support in respect to this significant life transition. To date, there is little information on the role of gender in the transition to driving cessation in PWD. The purpose of this study was to examine the role that gender plays among drivers and ex-drivers with dementia from the perspectives of PWD, their caregivers, and healthcare practitioners. Secondary thematic analyses were conducted from a pre-existing sample of persons with dementia (N=10), family caregivers (N=13), and healthcare practitioners (N=6) who participated in interviews and focus groups about their experiences around driving cessation in the context of dementia. Data analyses involved an inductive thematic technique that allowed for generating themes. The main themes identified gender differences as a significant factor in: (1) difficulty accepting driving cessation (2) driving as it is tied to identity, (3) emotional responses to driving cessation, (4) driving as part of the caregiving role. The findings suggest that there is a need for tailored interventions for men and women who lose their ability to drive, in addressing their unique emotional responses and in supporting them through this important life transition.

scholarly journals QOLP-04. PILOT STUDY OF A VIDEOCONFERENCE-BASED PSYCHOLOGICAL INTERVENTION FOR FAMILY CAREGIVERS OF PATIENTS WITH MALIGNANT GLIOMAS

2020 ◽  
Vol 22 (Supplement_2) ◽  
pp. ii175-ii175
Author(s):  
Deborah Forst ◽  
Michelle Mesa ◽  
Emilia Kaslow-Zieve ◽  
Areej El-Jawahri ◽  
Joseph Greer ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Self Efficacy ◽  
Coping Skills ◽  
Malignant Gliomas ◽  
Anxiety Symptoms ◽  
Structured Interviews ◽  
Post Intervention ◽  
Clinically Significant ◽  
And Coping

Abstract BACKGROUND Caregivers of patients with malignant gliomas experience substantial anxiety symptoms while caring for someone with progressive neurological decline. Yet, interventions to reduce psychological distress and improve quality of life (QoL) in this caregiver population are lacking. METHODS We conducted an open pilot study evaluating feasibility and acceptability of a cognitive behavioral therapy-based intervention for caregivers of patients with malignant gliomas with clinically significant anxiety (Generalized Anxiety Disorder [GAD-7] score ≥ 5). Caregivers participated in six videoconference sessions with a mental health provider. We defined the intervention as feasible if ≥ 70% of eligible caregivers enrolled and ≥ 70% of those enrolled completed ≥ 50% of sessions. We evaluated intervention acceptability in semi-structured interviews. Caregivers completed baseline and post-intervention surveys assessing anxiety and depression symptoms (Hospital Anxiety and Depression Scale), QoL (Caregiver Oncology Quality of Life Questionnaire), caregiving burden (Caregiver Reaction Assessment), self-efficacy (Lewis Cancer Self-Efficacy Scale), and perceived coping skills (Measure of Current Status-Part A). We explored post-intervention changes using paired t-tests. RESULTS We obtained consent from 70.0% (21/30) of caregivers approached, of which 66.7% (14/21) had clinically significant anxiety and thus were eligible to participate (mean age=55.7 years, 64.3% female). Among enrolled caregivers, 71.4% (10/14) completed ≥ 50% of sessions. In semi-structured interviews, all participants found the intervention helpful and valued the ability to participate remotely via videoconference. Among caregivers who completed at least one session, 80.0% (8/10) completed all assessments and were included in analyses. Post-intervention, caregivers reported reduced anxiety symptoms (P=.02) and improved QoL (P=.03) and coping skills (P=.001). We found no significant change in depression, caregiving burden, or self-efficacy. CONCLUSION Our videoconference-based intervention is feasible and acceptable to caregivers. Participants reported significant improvements in anxiety symptoms, quality of life, and coping skills post-intervention, supporting further investigation of the intervention in a randomized controlled trial.

scholarly journals Acceptability and Feasibility of a Mindfulness Intervention Delivered via Videoconferencing for People With Parkinson’s

2021 ◽  
pp. 089198872098890
Author(s):  
Angeliki Bogosian ◽  
Catherine S. Hurt ◽  
John V. Hindle ◽  
Lance M. McCracken ◽  
Debora A. Vasconcelos e Sa ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Cost Effectiveness ◽  
Qualitative Interviews ◽  
Quality Adjusted Life Year ◽  
Secondary Outcome ◽  
Structured Interviews ◽  
Potential Cost ◽  
Mindfulness Intervention ◽  
Related Quality

Mindfulness-based group therapy is a rapidly growing psychological approach that can potentially help people adjust to chronic illness and manage unpleasant symptoms. Emerging evidence suggests that mindfulness-based interventions may benefit people with Parkinson’s. The objective of the paper is to examine the appropriateness, feasibility, and potential cost-effectiveness of an online mindfulness intervention, designed to reduce anxiety and depression for people with Parkinson’s. We conducted a feasibility randomized control trial and qualitative interviews. Anxiety, depression, pain, insomnia, fatigue, impact on daily activities and health-related quality of life were measured at baseline, 4, 8, and 20 weeks. Semi-structured interviews were conducted at the end of the intervention. Participants were randomized to the Skype delivered mindfulness group (n = 30) or wait-list (n = 30). Participants in the mindfulness group were also given a mindfulness manual and a CD with mindfulness meditations. The intervention did not show any significant effects in the primary or secondary outcome measures. However, there was a significant increase in the quality of life measure. The incremental cost-effectiveness ratio was estimated to be £27,107 per Quality-Adjusted Life Year gained. Also, the qualitative study showed that mindfulness is a suitable and acceptable intervention. It appears feasible to run a trial delivering mindfulness through Skype, and people with Parkinson’s found the sessions acceptable and helpful.

scholarly journals Anxiety in autistic individuals who speak few or no words: A qualitative study of parental experience and anxiety management

Autism ◽  
2020 ◽  
pp. 136236132096236
Author(s):  
Joanne Tarver ◽  
Effie Pearson ◽  
Georgina Edwards ◽  
Aryana Shirazi ◽  
Liana Potter ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Intellectual Disability ◽  
Language Use ◽  
Management Strategies ◽  
Assessment Tools ◽  
Evidence Based ◽  
Structured Interviews ◽  
Verbal Language ◽  
Parental Recognition

Anxiety is a common co-occurring condition in autism and impacts quality of life of autistic individuals and their families; autistic individuals who speak few or no words represent an under-researched group. This qualitative study aimed to understand more about parental recognition and management of anxiety in autistic individuals who speak few or no words. Semi-structured interviews were conducted with parents/carers of 17 autistic individuals (mage = 14.29) recruited from an existing participant database and social media adverts. Using thematic analysis, 15 themes were placed under three a-priori grand themes: parental recognition of anxiety; parental management of anxiety; and anxiety impact on the autistic individual and their family. Due to reduced verbal language use and overlap with other behaviours, parents described difficulties recognising anxiety in their child. However, they also described use of a number of management strategies, including some which overlap with components of evidence-based interventions for emotional and behavioural problems in autistic individuals (e.g. exposure/sensory calming). Despite this, parents reported that anxiety continues to have significant impact on quality of life. The findings of this study can help to inform the development of targeted intervention and assessment measures for anxiety in autistic individuals who speak few or no words. Lay abstract Anxiety is a common condition in autistic individuals, including those who also have an intellectual disability. Despite this, autistic individuals who have severe to profound intellectual disability, or use few or no words, are often excluded from autism research. There are also very few assessment tools and interventions with known effectiveness for autistic individuals with intellectual disability. In this study, we aimed to learn more about parent/carers experiences of recognising and managing anxiety in autistic individuals who use few or no words. We conducted semi-structured interviews with parents and carers to address three research questions: (1) what techniques and management strategies do parents describe for anxiety-related behaviour in their child; (2) how do communication difficulties impact parental understanding and management of anxiety provoking situations and behaviours; (3) what is the impact of anxiety-related behaviours on the quality of life of autistic individuals and their families? During the interviews, parents described difficulties recognising anxiety in their child, mostly due to reduced verbal language use and anxiety behaviours overlapping with other behaviours (e.g. autism characteristics). However, parents also described use of a number of management strategies, including some which overlap with components of evidence-based interventions for emotional and behavioural problems in autistic individuals (e.g. exposure/sensory calming). Despite this, parents reported that anxiety continues to have significant impact on quality of life. We will use the findings of this study to inform future research to develop assessment tools and interventions for anxiety in autistic individuals who use few or no words.

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