Psychosocial Aspects of Physical Difference: The Experiences of Eight Adults with Albinism in Puerto Rico

2018 ◽  
Vol 112 (6) ◽  
pp. 701-712
Author(s):  
Noel Estrada-Hernandez
Keyword(s):  
Quality Of Life ◽  
Puerto Rico ◽  
Prime Factor ◽  
Psychosocial Aspects ◽  
Structured Interviews ◽  
Environmental Barriers ◽  
Employment Opportunities ◽  
Physical Difference ◽  
Physical Attributes

Introduction This article explored the experiences of eight persons with albinism in Puerto Rico in their quest for educational, social, and employment opportunities. Methods Volunteers participated in structured interviews that yielded the information presented in this article. Results Four main areas were identified that best described the stories of these participants: knowledge of and attitudes toward albinism, resilience and other supports, the challenges of albinism, and current needs. Discussion It is clear from the participants' stories that physical attributes are still a prime factor in determining a variety of interactions for persons with albinism, many with potential effects on quality of life. Implications for practitioners This article contributes to the literature documenting psychosocial aspects of the albinism condition. It provides evidence that environmental barriers and attitudes generally affect interactions with persons with albinism, knowledge that can be used by professionals who work with individuals with albinism.

Psychosocial Aspects of Quality of Life for Inflammatory Bowel Disease

2006 ◽  
Author(s):  
Carmen E. Curtis ◽  
Gary W. Harper ◽  
Leonard A. Jason ◽  
Brigida Hernandez
Keyword(s):  
Quality Of Life ◽  
Inflammatory Bowel Disease ◽  
Bowel Disease ◽  
Psychosocial Aspects ◽  
Inflammatory Bowel

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 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.

An Examination of Partner Perceptions of Partner Rotation: Direct and Indirect Consequences to Audit Quality

2012 ◽  
Vol 31 (1) ◽  
pp. 97-114 ◽  
Author(s):  
Brian E. Daugherty ◽  
Denise Dickins ◽  
Richard C. Hatfield ◽  
Julia L. Higgs
Keyword(s):  
Quality Of Life ◽  
Audit Quality ◽  
Negative Impact ◽  
Survey Instrument ◽  
Unintended Consequence ◽  
Data Availability ◽  
Structured Interviews ◽  
Partner Perceptions ◽  
New Industry

SUMMARY Using structured interviews and surveys of practicing audit partners, this study examines their perceptions with regard to mandatory partner rotation and cooling-off periods, and how recently enacted, more stringent rules, may negatively impact auditors' quality of life to the detriment of audit quality. Results suggest rotation, in general, increases partners' workloads and the likelihood of relocation. Additionally, results suggest that in response to accelerated rotation (and an extended cooling-off period), partners would rather learn a new industry than relocate. Importantly, partners perceive audit quality suffers from retraining, but not from relocating. Thus these results suggest an indirect, negative impact, and unintended consequence, of accelerated rotation/extended cooling-off periods on audit quality. Data Availability: The survey instrument is available upon request. Individual audit partner responses are confidential.

scholarly journals “Kicking and Screaming” or “Gracefully Conceding”: Creative Nonfiction Stories of Aging With Multiple Sclerosis

2021 ◽  
pp. 104973232110098
Author(s):  
Emma V. Richardson ◽  
Robert W. Motl
Keyword(s):  
Quality Of Life ◽  
Multiple Sclerosis ◽  
Older Adults ◽  
Knowledge Translation ◽  
Creative Nonfiction ◽  
Complex Phenomenon ◽  
Structured Interviews ◽  
Cognitive Dysfunctions ◽  
Positive Experiences

Aging with multiple sclerosis (MS) is a complex phenomenon. Some individuals report physical and cognitive dysfunctions regarding these combined experiences, whereas others report perceived improvements in quality of life. Beyond this, little is known regarding how people make sense of, and come to embody, negative or positive experiences of MS. Thus, our objectives were to (a) explore how people made sense of aging with MS and (b) present this in an artful, engaging, transformative way. To achieve this, we conducted 40 semi-structured interviews with older adults who had MS, analyzed data using pluralistic narrative analyses, and presented results through two creative nonfictions. We detail our process of creating the nonfictions before presenting the different stories of aging with MS, namely “Kicking and Screaming” and “Gracefully Conceding.” We then offer recommendations and implications for using these stories as knowledge translation devices, and further critique the limitations of these stories in practice.

scholarly journals Health-related quality of life among 13–14 year old adolescents with overweight - a mixed methods approach

2019 ◽  
Author(s):  
Turid Kristin Bigum Sundar ◽  
Kirsti Riiser ◽  
Milada Småstuen ◽  
Randi Opheim ◽  
Knut Løndal ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Mixed Methods ◽  
Well Being ◽  
Reference Population ◽  
Health Related Quality ◽  
Structured Interviews ◽  
Post Intervention ◽  
Related Quality ◽  
Health Related

Abstract BackgroundOverweight and obesity are public concerns with risk of adverse health outcomes. Health-related quality of life (HRQoL) is lower in adolescents than children in general. An increase in body mass index (BMI) is associated with a decrease in HRQoL. The purpose of this study was to measure and explore the HRQoL among adolescents with overweight or obesity who had participated in an intervention study with the aim of increasing PA, reducing BMI and promoting HRQoL.Methods Mixed methods, with a convergent design, were used to investigate how different methodological approaches could expand our understanding of the adolescents’ HRQoL. Quantitative post-intervention data on HRQoL were collected among the 84 intervention participants, aged 13–14 years, using the KIDSCREEN 52 questionnaire. The data were compared with a Norwegian reference population of 244 individuals, and analysed using a non-parametric Mann-Whitney test. Qualitative semi-structured interviews were conducted with 21 adolescents from the intervention. A directed approach to content analysis was adopted, using the ten sub-scales from KIDSCREEN 52.ResultsHRQoL in the intervention sample was significantly reduced on the sub-scale of physical well-being compared to the reference population. The reference population scored significantly lower than the intervention sample on the sub-scale of parent relation and home life. No significant differences were found on the other sub-scales. The qualitative data supported the quantitative findings on the sub-scale of physical well-being, but showed that perceptions of fitness, energy level or health could vary. Regarding parent relations, the interviewees extended this to include relationships to other family members as equally important. Most of the interviewees expressed a negative view of their bodies, but not their clothing or accessories. This may explain why no statistically significant differences were found on these aspects in the results from the KIDSCREEN questionnaire. ConclusionThe use of the KIDSCREEN 52 instrument gave important indications about the adolescents’ HRQoL. Combining methods enabled a comprehensive approach to research on HRQoL, indicating better ways of providing help. More research using the benefits of mixed methods approaches is needed to further elucidate these findings.

scholarly journals A qualitative exploration of the experience and quality of life of patients, and their family carers, admitted to a specialist eye hospital with microbial keratitis

2020 ◽  
Author(s):  
Shelley Anne Tranter ◽  
Maria Cabreras-Aguas ◽  
Mandy Riddell ◽  
Joanna McCulloch ◽  
Therese Riley ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Qualitative Interviews ◽  
Family Carers ◽  
Microbial Keratitis ◽  
Structured Interviews ◽  
Post Discharge ◽  
Convenience Sample ◽  
Family Work ◽  
Related Quality

Abstract Background: Microbial keratitis is a vision-threatening condition requiring intensive treatment. Understanding patients’ and carers’ experience during and after hospitalisation can inform improvements in care and outcomes. This study explored the vision-related quality of life, and the experiences of patients with microbial keratitis and their family carers when admitted to a quaternary referral eye hospital in AustraliaMethods: The study employed mixed methods, including qualitative interviews and a survey in hospital and a telephone interview post-discharge. A convenience sample was recruited of 33 patients with microbial keratitis who presented to hospital between March and October 2017, and 10 of their family carers. Semi-structured interviews were audiotaped, transcribed verbatim, coded and analysed using thematic analysis. Patient participants completed the National Eye Institute Visual Functioning Questionnaire – 25 (NEIVFQ-25).Results: Qualitative analyses identified two main themes: Saving sight, with subthemes of costs of saving sight, and travel and transportation; Safe-guarding home and normal life with subthemes of family, work and pastimes. A group mean NEIVFQ-25 score of 74 was similar to other ophthalmic disease groups but pain scores were higher.Conclusion: Findings provide insights into the experiences and often unspoken concerns of microbial keratitis patients and their family carers, revealing the priority and the associated costs of saving sight, and the implications for family and lifestyles. These patients reported similarly reduced vision-related quality of life but greater pain compared to other ophthalmic groups. Findings point to ways to improve their experience and potentially reduce the high rates of unplanned representations of this patient group.

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