Amputees Unanimous: A 12-step program

2019 ◽  
Vol 43 (3) ◽  
pp. 293-300 ◽  
Author(s):  
Catrinna Amorelli ◽  
Kathleen Yancosek ◽  
Ruth Morris
Keyword(s):  
Lived Experience ◽  
Healthcare Providers ◽  
Psychosocial Care ◽  
Phenomenological Approach ◽  
Psychosocial Health ◽  
Limb Loss ◽  
Mutual Help ◽  
The Future ◽  
Care Models ◽  
Step Program

Background: Alongside physical impairment, psychosocial health issues may arise after amputation, impacting quality of life. Traditional psychosocial care models provide services in a linear fashion, with limited supports upon discharge. A novel program entitled Amputees Unanimous is a 12-step program provided for amputees by amputees. Objective: To shape the final content of Amputees Unanimous by identifying personal beliefs and opinions of healthcare professionals and amputees. Study Design: Qualitative design utilizing a phenomenological approach. Method: Five focus groups were held: four with amputees and one with healthcare providers. A phenomenological approach shaped the inquiry of the lived experience of limb loss in relation to the content of Amputees Unanimous. Results: Three themes emerged: (1) accepting limb loss, (2) peer inspiration, and (3) regaining prior level of function. Conclusion: Limb loss may alter one’s self-image, both physically and psychologically, having a profound effect on how an individual copes throughout his or her lifetime. The content and delivery format of Amputees Unanimous could be tested for effectiveness as a program tailored to facilitate coping after limb loss and to provide encouragement, support, and hope for the future of amputees. Clinical relevance A dynamic, amputee-led, mutual help program may provide individuals with limb loss a place for encouragement, support, and optimism for the future.

scholarly journals QOLP-06. PHENOMENOLOGICAL EXPLORATION OF THE LIVED EXPERIENCE OF QUALITY OF LIFE FOR PATIENTS WITH GLIOBLASTOMA AND THEIR PRIMARY CARE PARTNERS

2020 ◽  
Vol 22 (Supplement_2) ◽  
pp. ii175-ii176
Author(s):  
Meghan Tierney ◽  
Cynthia Peden-McAlpine
Keyword(s):  
Quality Of Life ◽  
Primary Care ◽  
Lived Experience ◽  
Family Care ◽  
Phenomenological Approach ◽  
Future Research ◽  
Role Changes ◽  
Care Partners ◽  
The Future

Abstract INTRODUCTION Quality of life (QOL) should be included among the important outcomes of brain tumor treatment. QOL is often reduced to a measure of treatment tolerability, resulting in a lack of understanding of how patients experience this phenomenon. There is also limited knowledge surrounding the meaning of QOL for family care partners. The research (in progress) aims to explore the meaning of lived experience of QOL during treatment for glioblastoma (GBM) for both patients and their primary care partners. It will also examine similarities and differences in QOL perceptions within patient-care partner dyads. METHODS Using a phenomenological approach, this study is recruiting patients receiving treatment for GBM and their care partners. Participants complete a timeline depicting significant events impacting QOL from the time of the patient’s diagnosis to the present. They then complete an individual, unstructured interview describing their experience of QOL. Interviews are recorded and transcribed. The research team reviews and completes a thematic analysis on transcripts. RESULTS Numerous themes are emerging from the data. One theme among patients is: Feeling Uncertain About the Future. Patients discussed feeling uncertain about their prognosis during their course of treatment. They talked about the need to adjust to multiple changes in their lives over time. This uncertainty extended to concern for their QOL in the future. One theme among care partners is: Challenges in Relationship with Spouse. Care partners reported relationship conflict stemming from both personality changes in their spouse and role changes resulting in increased responsibilities for the care partner. CONCLUSION This study is providing insight into the meaning and experience of QOL for patients undergoing treatment for GBM, along with meaning and experience of QOL for their care partners. The findings will have implications for clinical practice and generate insights for future research.

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 College programming for students in addiction recovery: A PRISMA-guided scoping review

2020 ◽  
Author(s):  
Noel Vest ◽  
Meg Reinstra ◽  
Christine Timko ◽  
John Kelly ◽  
Keith Humphreys
Keyword(s):  
Lived Experience ◽  
Scoping Review ◽  
Healthcare Providers ◽  
Well Being ◽  
College Campuses ◽  
Addiction Recovery ◽  
Publication Type ◽  
Mutual Help ◽  
Full Text Review ◽  
Study Characteristics

Abstract The health and well-being of students in recovery from substance use disorder is increasingly being recognized as a priority on college campuses. This scoping review maps the state of the existing literature evaluating collegiate recovery programming to highlight research gaps and inform policy. We conducted a systematic search of articles related to collegiate recovery programming published before August 2020. The 15 extracted study characteristics included publication type, study design, primary outcomes, reporting of behavioral addictions and mutual-help groups, sample demographic information, school size, ownership, and funding source. The PRISMA-guided search strategy identified 357 articles for abstract review; of 113 articles retained for full-text review, 54 studies were identified for final inclusion. Primary outcomes were coded into four domains: clinical, lived experience, program characterization, and stigma. All but one of the articles were observational (57%) or qualitative (41%) research designs. Government or foundation grants funded only 11% of the studies. Findings suggest that collegiate recovery programs reduce risk of relapse, improve educational outcomes, and provide social support for students in recovery. The domains identified offer a framework for healthcare providers, college administrators, and researchers to understand and improve programs, thereby better serving this marginalized student group.

The Lived Experience of Orchestral String Musicians with Playing Related Pain

2019 ◽  
Vol 34 (4) ◽  
pp. 198-204
Author(s):  
Deanna Bourne ◽  
Amy Hallaran ◽  
Jane Mackie
Keyword(s):  
Lived Experience ◽  
Thematic Analysis ◽  
Personal Growth ◽  
Healthcare Professionals ◽  
Healthcare Providers ◽  
Phenomenological Approach ◽  
The Body ◽  
University Level ◽  
Multiple Domains ◽  
Objective Rates

OBJECTIVE: Rates of pain are high among musicians, and string musicians may be particularly at risk. The aim of the study was to investigate the lived experience of orchestral string musicians with playing-related pain. METHODS: The study used a Heideggerian phenomenological approach. Five professional and university-level string musicians were interviewed about their experience of playing-related pain, and transcriptions of their interviews were analysed using thematic analysis. RESULTS: Participants engaged in a variety of types of musical performance, however they described orchestral playing as contributing the most to their pain. Pain led to increased focus on the body and less engagement in the music. They experienced a sense of loss in multiple domains of their lives, yet also described personal growth as a result of their pain. Participants were more likely to disclose their pain in student orchestras than in professional ones. CONCLUSION: Pain impacts multiple domains of musician’s lives, and therefore must be addressed holistically by healthcare providers. While musicians are finding that it is becoming more acceptable to discuss their pain, pain is still not adequately addressed. Understanding the experience of musicians with playing-related pain could help healthcare professionals to better serve this unique population.

The Experience of Caregiving for an Adult Sibling with Down Syndrome

2021 ◽  
pp. 108482232110278
Author(s):  
Patricia Sciscione
Keyword(s):  
Down Syndrome ◽  
Lived Experience ◽  
Social Service ◽  
Phenomenological Approach ◽  
Service Needs ◽  
Full Time ◽  
Personal Lives ◽  
Adult Sibling ◽  
The Future ◽  
Adult Lives

Adults with Down syndrome are living longer than ever before and are likely to outlive their parents. Adult siblings have been identified as future caregivers, yet little is known about this experience. The prominent caregiving literature focuses on the anticipation of caregiving rather than on the experience of being a caregiver. The aim of this study was to explore the lived experience of being a caregiver to an adult sibling with Down syndrome. A descriptive phenomenological approach was used to interview seven siblings who were partial and full caregivers for an adult sibling with Down syndrome. The participants fulfilled multiple roles in the lives of their siblings throughout their adult lives, but felt unprepared to fulfill the duties of being full-time caregivers upon the death of their parents. Navigation of the social service system was complex and frustrating with no support or guidance. Everyday tasks of caregiving were time consuming and managing the medical and social service needs of their siblings was viewed as a huge responsibility. Participants felt the responsibilities of caregiving put limitations on their personal lives. Despite the challenges, participants felt caregiving had benefits also. The transition to being caregivers was difficult because of the lack of planning by their parents, yet participants have not made plans for the future succession of caregiving. Implications are identified for healthcare and social service professionals to aid families in the care of adults with Down syndrome and in planning for the future transition of caregiving in families.

scholarly journals The Adolescent Female's Lived-Experience of Obesity

2014 ◽  
Author(s):  
Jamie Randall-Arell ◽  
Rose Utley
Keyword(s):  
Lived Experience ◽  
Adolescent Girls ◽  
Health Care Providers ◽  
Phenomenological Approach ◽  
Psychosocial Health ◽  
Adolescent Female ◽  
Care Providers ◽  
Obese Adolescent ◽  
Negative Messages ◽  
The Impact

For adolescent girls, negative messages about obesity and body image from society, media, school, family, and peers are plentiful. Yet the lived-experience of obese adolescent girls has rarely been reported in scientific literature. The purpose of this study was to explore the lived-experience of the obese adolescent female and understand the impact of the messages received. A descriptive phenomenological approach was used to conduct face-to-face interviews with eight adolescent girls, age 11-18. Participants were recruited through network sampling and had a body mass index of 30 or more. Merleau-Ponty’s philosophy of embodied perception guided interpretation and data analysis. Seven themes describe their lived experience and reflect the internal and external messages perceived including, false assumptions, myth of perfection, nonculpable diversity, nobody’s perfect, beauty is not skin deep, disengagement, and society’s misplaced focus. Awareness of the livedexperience described in these themes, may guide health care providers to formulate a holistic plan of care that will positively impact both the physical and psychosocial health of the adolescent female who is obese.

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.

Does a comprehensive service user-led education programme effect more positive attitudes towards recovery and less stigmatising attitudes towards people with lived experience of mental distress in medical students? A comparative cohort study

2021 ◽  
pp. 000486742098788
Author(s):  
Giles Newton-Howes ◽  
Jessica Senior ◽  
Ben Beaglehole ◽  
Gordon L Purdie ◽  
Sarah E Gordon
Keyword(s):  
Cohort Study ◽  
Medical Students ◽  
Lived Experience ◽  
Service User ◽  
Mental Distress ◽  
Healthcare Providers ◽  
Education Programme ◽  
Positive Attitudes ◽  
Comprehensive Service ◽  
The Impact

Objective: This study sought to investigate the impact of a service user-led anti-stigma and discrimination education programme, encompassing numerous interventions focused on facilitating multiple forms of social contact, the promotion of recovery, and respect for human rights, on medical student attitudes. Method: A comparison cohort study was used to compare the attitudes of two cohorts of medical students who received this programme as part of their fifth (the fifth-year cohort) or sixth (the sixth-year cohort) year psychological medical education attachment (programme cohorts) with two cohorts of equivalent students who received a standard psychological medical attachment (control cohorts). Attitudes to recovery (using the Recovery Attitudes Questionnaire) and stigma (using the Opening Minds Scale for Healthcare Providers) were measured at the beginning and end of the attachments for each year and compared both within and between the cohorts using Wilcoxon signed-rank or Wilcoxon rank-sum tests. Results: With sample sizes ranging from 46 to 70 across all cohorts, after their psychological medicine attachment both the programme and control cohorts showed more positive attitudes towards recovery and less stigmatising attitudes towards people with lived experience of mental distress. Significant differences between the programme cohorts and the control cohorts were found for recovery attitudes (median difference of 2, p < 0.05 in both fifth and sixth year), with particularly large differences being found for the ‘recovery is possible and needs faith’ subdomain of the Recovery Attitudes Questionnaire. There were no significant between cohort differences in terms of stigmatising attitudes as measured by the Opening Minds Scale for Healthcare Providers. Conclusion: The introduction of a comprehensive service user-led anti-stigma and education programme resulted in significant improvements in recovery attitudes compared to a control cohort. However, it was not found to be similarly superior in facilitating less stigmatising attitudes. Various possible reasons for this are discussed.

scholarly journals The experiences of women with breast cancer who undergo fertility preservation

2021 ◽  
Vol 2021 (2) ◽  
Author(s):  
T Dahhan ◽  
F van der Veen ◽  
A M E Bos ◽  
M Goddijn ◽  
E A F Dancet
Keyword(s):  
Breast Cancer ◽  
Fertility Preservation ◽  
Conflicts Of Interest ◽  
Medical Center ◽  
Academic Medical Center ◽  
Psychosocial Care ◽  
Phenomenological Approach ◽  
Starting Point ◽  
Competing Interest ◽  
Experiences Of Women

Abstract STUDY QUESTION How do women, who have just been diagnosed with breast cancer, experience oocyte or embryo banking? SUMMARY ANSWER Fertility preservation was a challenging yet welcome way to take action when confronted with breast cancer. WHAT IS KNOWN ALREADY Fertility preservation for women with breast cancer is a way to safeguard future chances of having children. Women who have just been diagnosed with breast cancer report stress, as do women who have to undergo IVF treatment. How women experience the collision of these two stressfull events, has not yet been studied. STUDY DESIGN, SIZE, DURATION We performed a multicenter qualitative study with a phenomenological approach including 21 women between March and July 2014. Women were recruited from two university-based fertility clinics. PARTICIPANTS/MATERIALS, SETTING, METHODS Women with breast cancer who banked oocytes or embryos 1–15 months before study participation were eligible. We conducted in-depth, face-to-face interviews with 21 women, which was sufficient to reach data saturation. MAIN RESULTS AND THE ROLE OF CHANCE The 21 women interviewed had a mean age of 32 years. Analysis of the 21 interviews revealed three main experiences: the burden of fertility preservation, the new identity of a fertility patient and coping with breast cancer through fertility preservation. LIMITATIONS, REASONS FOR CAUTION Interviewing women after, rather than during, fertility preservation might have induced recall bias. Translation of quotes was not carried out by a certified translator. WIDER IMPLICATIONS OF THE FINDINGS The insights gained from this study of the experiences of women undergoing fertility preservation while being newly diagnosed with breast cancer could be used as a starting point for adapting the routine psychosocial care provided by fertility clinic staff. Future studies are necessary to investigate whether adapting routine psychosocial care improves women’s wellbeing. STUDY FUNDING/COMPETING INTEREST(S) None of the authors in this study declare potential conflicts of interest. The study was funded by the Center of Reproductive Medicine of the Academic Medical Center.

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