Factors influencing quality of life in children with low‐flow vascular malformations: a qualitative study using focus groups

2020 ◽  
Author(s):  
E. Casassa ◽  
A. Bergeron ◽  
A. Maruani ◽  
C. Labreze ◽  
S. Barbarot ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Qualitative Study ◽  
Focus Groups ◽  
Vascular Malformations ◽  
Low Flow ◽  
Factors Influencing

Factors influencing quality of life in patients with inherited ichthyosis: a qualitative study in adults using focus groups

2012 ◽  
Vol 166 (3) ◽  
pp. 646-648 ◽  
Author(s):  
J. Mazereeuw-Hautier ◽  
I. Dreyfus ◽  
S. Barbarot ◽  
L. Serrentino ◽  
E. Bourdon-Lanoy ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Qualitative Study ◽  
Focus Groups ◽  
Factors Influencing ◽  
Inherited Ichthyosis

scholarly journals Vocational rehabilitation to enhance return to work after trauma (ROWTATE): protocol for a non-randomised single-arm mixed-methods feasibility study

2021 ◽  
Vol 7 (1) ◽  
Author(s):  
Denise Kendrick ◽  
◽  
Roshan das Nair ◽  
Blerina Kellezi ◽  
Richard Morriss ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Mixed Methods ◽  
Qualitative Study ◽  
Return To Work ◽  
Focus Groups ◽  
Vocational Rehabilitation ◽  
Case Studies ◽  
Feasibility Study ◽  
Traumatic Injuries

Abstract Background Traumatic injuries are common amongst working-age adults. Survivors often experience physical and psychological problems, reduced quality of life and difficulty returning to work. Vocational rehabilitation improves work outcomes for a range of conditions but evidence of effectiveness for those with traumatic injuries is lacking. This study assesses feasibility of delivering a vocational rehabilitation intervention to enhance return to work and improve quality of life and wellbeing in people with at least moderate trauma to inform design of a definitive randomised controlled trial (RCT). Methods Non-randomised, single-arm, multi-centre mixed-methods feasibility study with nested case studies and qualitative study. The case studies comprise interviews, observations of clinical contacts and review of clinical records. The qualitative study comprises interviews and/or focus groups. Participants will be recruited from two UK major trauma centres. Participants will comprise 40 patients aged 16–69 with an injury severity score of > 8 who will receive the intervention and complete questionnaires. Interviews will be conducted with 10 patients and their occupational therapists (OTs), clinical psychologists (CPs), employers and commissioners of rehabilitation services. Fidelity will be assessed in up to six patients by observations of OT and CP—patient contacts, review of patient records and intervention case report forms. OT and CP training will be evaluated using questionnaires and competence to deliver the intervention assessed using a team objective structured clinical examination and written task. Patients participating in and those declining participation in the study will be invited to take part in interviews/focus groups to explore barriers and facilitators to recruitment and retention. Outcomes include recruitment and retention rates, intervention fidelity, OT and CP competence to deliver the intervention, experiences of delivering or receiving the intervention and factors likely to influence definitive trial delivery. Discussion Effective vocational rehabilitation interventions to enhance return to work amongst trauma patients are urgently needed because return to work is often delayed, with detrimental effects on health, financial stability, healthcare resource use and wider society. This protocol describes a feasibility study delivering a complex intervention to enhance return to work in those with at least moderate trauma. Trial registration ISRCTN: 74668529. Prospectively registered on 23 January 20

Development and Pilot testing of a Disease-Specific Quality of Life Questionnaire for Adult Patients with Haemophilia (Haem-A-QoL).

Blood ◽  
2004 ◽  
Vol 104 (11) ◽  
pp. 2214-2214 ◽  
Author(s):  
Sylvia v. Mackensen ◽  
Alessandro Gringeri ◽  
Keyword(s):  
Quality Of Life ◽  
Social Interaction ◽  
Qualitative Study ◽  
Focus Groups ◽  
Life Questionnaire ◽  
Quality Of Life Questionnaire ◽  
Draft Version ◽  
The University ◽  
Disease Specific

Abstract Background: Haemophilia and its treatment influence the every-day-life of patients and impact on their quality of life. For the adequate assessment of quality of life validated instruments are necessary. While haemophilia-specific questionnaires for children are existing (v. Mackensen et al., 2004; Young et al., 2004), up to now no validated instrument for adults is available. Currently some developmental works are on-going in order to develop such an instrument as well for adults. In a multi-centre validation study a health-related quality of life questionnaire for adults with haemophilia was developed and pilot tested in Italy. Aim: This study was designed to develop and validate a haemophilia-specific quality of life measurement for adults (Haem-A-QoL) in Italy. Methods: The study consisted of three phases: a) a qualitative study including focus groups (with patients and physicians), item formulation and expert ratings of a catalogue of items by patients and physicians, b) a psychometric study including cognitive debriefing, and feasibility testing and c) data analysis. The qualitative study has been performed by the University of Hamburg in cooperation with the University of Milan. Results: Focus groups with semi-structured interviews were performed in 32 patients from 6 Italian haemophilia centres (Milan, Perugia, Genova, Bari, Castelfranco, Parma). 14 physicians and 8 nurses were asked the same questions. Patients and physicians/nurses consider similar dimensions important for quality of life. But the order of importance is different for patients (physical health, social interaction, dependence, future, work) and physicians/nurses (dependence, work, social interaction, treatment, physical health). Based on the focus group results a draft version of the questionnaire was formulated and given to patients and physicians in order to evaluate the items concerning importance for haemophilia and comprehensibility. The draft version consisted of 159 items. After expert evaluation the questionnaire was revised: several items could be eliminated and some were reworded. The revised version of the Haem-A-QoL consisting of 50 items and was psychometrically tested in 10 Italian centres. The pilot testing showed excellent psychometric characteristics in terms of reliability and validity (convergent, discriminant). Conclusions: The development of a disease-specific quality of life instrument requires multiple steps and the involvement of different experts (patients, physicians, nurses) in order to have a standardised and valid questionnaire. The Haem-A-QoL is well-accepted by adult haemophiliacs and proved to be a valid and reliable disease-specific self-report measurement for the assessment of quality of life in haemophiliacs. In a next step the Haem-A-QoL will be applied in clinical trials to evaluate patient perceptions of different treatment regimens in haemophilia.

scholarly journals Survivor and Caregiver Perceptions of Lymphoma: A Qualitative Study

Blood ◽  
2018 ◽  
Vol 132 (Supplement 1) ◽  
pp. 3561-3561 ◽  
Author(s):  
Jackelyn B. Payne ◽  
Cathy D. Ho ◽  
Lillian Chen ◽  
Kaylin V. Dance ◽  
Christopher R Flowers
Keyword(s):  
Quality Of Life ◽  
Qualitative Study ◽  
Focus Groups ◽  
Research Funding ◽  
Clinical Care ◽  
Individual Interview ◽  
Individual Interviews ◽  
Lymphoma Survivors ◽  
Oriented Research

Abstract Background: With more than 80% of Hodgkin lymphoma patients being cured and non-Hodgkin lymphoma 10-year survival rates improving, there has been a dramatic growth in the number of lymphoma survivors. Despite these successes, survivors are often left coping with adverse outcomes resulting from cancer treatment. Research examining the needs of lymphoma survivors and their caregivers is needed as this population continues to grow. Objective: We conducted a qualitative study with lymphoma survivors and caregivers to: 1) determine perceived needs and priorities regarding lymphoma care and 2) examine views, understanding, and priorities for participation in therapeutic and non-therapeutic research studies. Methods: The qualitative study consisted of two phases: semi-structured focus groups and individual semi-structured telephone interviews. In Phase I, two semi-structured focus groups were conducted in 2017 with lymphoma survivors (n=8) and caregivers (n=7) recruited among attendees of regional and national lymphoma patient education conferences. Participants were asked to discuss their experiences, opinions, and priorities for lymphoma care and research. Results from the focus groups informed the telephone individual interview guide. In Phase II, researchers conducted 19 individual semi-structured phone interviews in the spring of 2018 with lymphoma survivors (n=17) and caregivers (n=2). Individual interviews allowed for an in-depth exploration of the themes garnered from the initial focus groups of lymphoma survivors and caregivers. Individual interview participants were recruited from regional patient education conferences and among current research participants at a university research hospital in the state of Georgia. Focus groups and interviews were recorded and transcribed verbatim. Thematic analysis was used to identify themes emerging from these data. MAXQDA 18.0.8 qualitative data analysis software was utilized to facilitate a constant-comparative coding process to identify the resulting themes. Results: Most focus group participants were frustrated by a lack of information received regarding diagnoses, treatment options, survivorship-related care, and research opportunities. Survivors and caregivers commonly felt disconnected from their clinical care team due to lack of communication, although some described trusting relationships. In particular, caregivers described their needs as being completely unaddressed in the care process. Participants expressed great interest in research, but were frustrated by the difficulty of finding research studies and results relevant to them. In Phase II, individual interviewees described their own unmet emotional needs and those of their caregivers. Several participants described their desire for more holistic and survivorship-oriented research, including studies to generate guidance for quality of life of cancer patients and survivors, alternative and non-traditional medicine, diet, and emotional or mental health. Emotionally, participants described how debilitating the fear of the unknown can be and the coping strategies they employed to combat this, including reliance on support systems, practicing gratefulness, and fostering trusting relationships with their clinical care teams. Interestingly, participants also experienced benefits from their cancer experiences, most notably strengthened relationships with their loved ones and increased spirituality or mindfulness. Conclusion: Results gleaned from focus groups and individual interviews provided insight into the unmet emotional and supportive needs of this population. Lymphoma survivors and their caregivers expressed their frustrations with their cancer experiences. These findings identified unmet patient-oriented research needs including research regarding quality of life after cancer treatment, messaging and communication between the scientific community and cancer patients, and emotional well-being. Health care professionals and investigators can utilize these data to provide meaningful information regarding care delivery, supportive services, and lymphoma research that meets the needs of lymphoma survivors and caregivers. Disclosures Flowers: Bayer: Consultancy; Denovo Biopharma: Consultancy; Gilead: Research Funding; Millennium/Takeda: Research Funding; Abbvie: Consultancy, Research Funding; Gilead: Consultancy; Janssen Pharmaceutical: Research Funding; Abbvie: Research Funding; Pharmacyclics/ Janssen: Consultancy; Pharmacyclics: Research Funding; OptumRx: Consultancy; Karyopharm: Consultancy; Genentech/Roche: Consultancy; TG Therapeutics: Research Funding; Acerta: Research Funding; Spectrum: Consultancy; BeiGene: Research Funding; Genentech/Roche: Research Funding; Celgene: Research Funding; Burroughs Wellcome Fund: Research Funding; Eastern Cooperative Oncology Group: Research Funding; National Cancer Institute: Research Funding; V Foundation: Research Funding.

scholarly journals Analysis of Medication Adherence and Its Influencing Factors in Patients with Schizophrenia in the Chinese Institutional Environment

2021 ◽  
Vol 18 (9) ◽  
pp. 4746
Author(s):  
Wei Yu ◽  
Jie Tong ◽  
Xirong Sun ◽  
Fazhan Chen ◽  
Jie Zhang ◽  
...  
Keyword(s):  
Quality Of Life ◽  
Medication Adherence ◽  
Activities Of Daily Living ◽  
Influencing Factors ◽  
Self Efficacy ◽  
Daily Living ◽  
Institutional Environment ◽  
Factors Influencing ◽  
Quality Of Life Scale

Background: Factors related to medication adherence in patients with schizophrenia have always been key to the treatment and rehabilitation of these patients. However, the treatment modes in different countries are not the same, and there is no research on the factors influencing medication adherence under different mental health service modes. Objectives: The purpose of this study was to explore medication adherence and its influencing factors in patients with schizophrenia in the Chinese institutional environment. Methods: We conducted a cross-sectional study of hospitalized persons living with schizophrenia from November 2018 to January 2019. A systematic sampling method was used to select 217 hospitalized persons living with schizophrenia. The Medication Adherence Rating Scale (MARS), Positive and Negative Syndrome Scale (PANSS), General Self-Efficacy Scale (GSES), Schizophrenia Quality of Life Scale (SQLS), and Scale of Social Skills for Psychiatric Inpatients (SSPI) were used to explore medication compliance and its influencing factors in the Chinese institutional environment. Results: The descriptive analysis and ANOVA showed that there were no significant differences in medication adherence when assessed by demographic characteristics such as sex, marital status, and education level (p > 0.05). A correlation analysis showed that there was no significant correlation between medication adherence and mental symptoms (p > 0.05) but that there was a positive correlation with self-efficacy, quality of life, and activities of daily living (p < 0.01). The linear regression analysis showed that self-efficacy, psychosocial factors, symptoms/side effects, and activities of daily living had significant effects on medication adherence (F = 30.210, p < 0.001). Conclusions: Our findings show that the self-efficacy, quality of life, and social function of patients with schizophrenia are important self-factors influencing medication adherence in the Chinese institutional environment.

scholarly journals Impact of Pediatric COVID-19 on Family Health-Related Quality of Life: A Qualitative Study from Latvia

2021 ◽  
Vol 8 ◽  
pp. 2333794X2110123
Author(s):  
Inese Stars ◽  
Liene Smane ◽  
Zanda Pucuka ◽  
Ieva Roge ◽  
Jana Pavare
Keyword(s):  
Quality Of Life ◽  
Qualitative Study ◽  
Family Relationships ◽  
Family Health ◽  
Support Network ◽  
Health Related Quality ◽  
Related Quality ◽  
Health Related ◽  
The Impact

Information on family health-related quality of life (FHRQoL) among families of children with the coronavirus disease 2019 (COVID-19) is limited. This qualitative study explores the impact of pediatric COVID-19 on FHRQoL from the parents’ perspective. Semi-structured interviews were conducted with parents (n = 20) whose children had tested positive for the severe acute respiratory syndrome coronavirus 2 (SARS-CoV-2). Inductive thematic analysis revealed the following 10 themes that represented parents’ perception of FHRQoL while taking care of a child with COVID-19: pediatric COVID-19 as a disease with many unknowns; emotional saturation; internal family relationships in the context of “a new experience”; routine household activities and daily regimen while family is in lockdown; plenty of free time; a wide social support network; social stigma associated with COVID-19; different options for work; savings and debts; challenges with family housing and transport availability. Our results show that parents experience multiple effects of pediatric COVID-19 with regard to FHRQoL.

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