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Exploring the quality of life issues in people with retinal diseases: a qualitative study.

ABSTRACT: The lack of an appropriate retina-specific patient-reported outcome instrument restricts the understanding of the full impact of hereditary retinal diseases and other less common but potentially blinding acquired retinal diseases such as, vascular occlusions, epiretinal membrane, macular hole, central serous retinopathy and other vitreoretinopathies on quality of life. This study aims to explore the quality of life issues in people with hereditary retinal diseases and acquired retinal diseases to develop disease-specific patient-reported outcome instruments.A qualitative research methodology to understand the lived experiences of people with retinal diseases was carried out. Data were collected through semistructured interviews. The coding, aggregation and theme development was carried out using the NVivo -10 software.Seventy-nine interviews were conducted with participants with hereditary retinal diseases (n = 32; median age = 57 years) and acquired retinal diseases (n = 47; median age = 73 years). We identified nine quality of life themes (domains) relevant to people with retinal diseases. Difficulty in performing important day-to-day activities (activity limitation) was the most prominent quality of life issue in the hereditary retinal diseases group whereas concerns about health, disease outcome and personal safety (health concerns) was the most prominent quality of life issue in the acquired retinal diseases group. Participants with hereditary retinal diseases had more issues with social interaction (social well-being), problems with mobility and orientation (mobility), and effect on work and finance (economic) than participants with acquired retinal diseases. On the contrary, participants with acquired retinal diseases reported more inconveniences (conveniences) than participants with hereditary retinal diseases, which were mostly attributed to treatment. Participants with hereditary retinal diseases were coping better compared to participants with acquired retinal diseases.Our study found that participants with both hereditary and acquired retinal diseases are living with myriad of disease-specific quality of life issues. Many of these issues are completely different and unique to each disease group. Hence, these group of diseases would need separate patient-reported outcome instruments to capture the disease-specific quality of life impacts.

SUBMITTER: Prem Senthil M

PROVIDER: S-EPMC5934910 | biostudies-literature | 2017

REPOSITORIES: biostudies-literature

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Exploring the quality of life issues in people with retinal diseases: a qualitative study.

Prem Senthil Mallika M Khadka Jyoti J Gilhotra Jagjit Singh JS Simon Sumu S Pesudovs Konrad K

Journal of patient-reported outcomes 20170921 1

<h4>Background</h4>The lack of an appropriate retina-specific patient-reported outcome instrument restricts the understanding of the full impact of hereditary retinal diseases and other less common but potentially blinding acquired retinal diseases such as, vascular occlusions, epiretinal membrane, macular hole, central serous retinopathy and other vitreoretinopathies on quality of life. This study aims to explore the quality of life issues in people with hereditary retinal diseases and acquired ...[more]

PMID: 29757297

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Project description:BackgroundDespite experiencing high rates of trauma and trauma-related conditions, people with psychosis are seldomly asked about possible traumatic events. While there are some barriers to discussing trauma in clinical services, research has shown that disclosure is not only possible but also beneficial to both psychotic and traumatic symptoms. The current study is the first to evaluate service users' perception of the influence of trauma on the development and maintenance of their psychotic symptoms, as well as their views on how their life and mental health have been affected by traumatic events and their disclosure (or lack of).MethodsEleven participants with experiences of psychosis and trauma took part in semi-structured interviews.ResultsConsistently with previous literature, our participants reported high rates of interpersonal trauma, but had rarely had the opportunity to discuss any of these events. Using thematic analysis, we identified three major themes that have important implications for healthcare: factors that facilitate or hinder talking about trauma; consequences of talking or not; and relationship between trauma and psychosis. Participants generally benefited from talking about trauma and concerningly often associated the prolonged lack of opportunities to discuss traumatic events with negative feelings towards the self and with a deterioration of their mental health. Participants also recognised direct links between past traumas and the content and characteristics of their psychotic experiences.ConclusionsOur findings highlight the importance, as perceived by service users, of discussing trauma and looking at psychosis through a "trauma lens". These results stress the need to systematically assess trauma history and traumatic symptoms in psychosis and might potentially help to overcome clinicians' worries about discussing trauma with service users. Our findings underscore the need to change current practice and implement trauma-informed approaches to understand clients' difficulties and provide support.

Project description:IntroductionThe impact of periodontal disease on oral health-related quality of life (OHRQoL) has often been investigated from a quantitative research perspective, which is based on clinical findings and an OHRQoL questionnaire. Very few studies have examined the issue from the view of qualitative research. To our knowledge, there have been no previous qualitative studies focusing the effect of periodontal disease on OHRQoL in Indonesian older people.ObjectivesTo explore and understand the impact of periodontal disease on the OHRQoL of older people as a subjective reflection in relation to periodontal disease experiences.MethodsSemi-structured interviews were conducted in a sample of 31 older people with generalized chronic periodontitis. Thematic analysis was used to identify the key issues in participants' accounts. The analysis was undertaken by 2 independent coders to ensure reliability. To achieve thematic saturation, successive interviews were undertaken until 5 sequential interviews did not bring new themes.ResultsParticipants reported the negative effects likely related to periodontal disease. The impacts of periodontal disease were described by these older people as affecting more than pain, physical discomfort, and physical function restrictions. Periodontal disease also affected their psychological and social aspects of daily living. In addition, this study identified themes related to individual and environmental factors that may modify and personalize periodontal disease experiences. Furthermore, this study identified a misleading belief that problems related to periodontal disease were a normal part of aging, which might influence individuals' expectations toward oral health. Relatedly, participants frequently reported that the progression of tooth mobility to tooth loss was an inevitable part of the aging process.ConclusionsPeriodontal disease negatively affected participants' OHRQoL. It is fundamental to understand older people's perceptions toward their periodontal disease as well as individual and environmental factors that may have an influence on their periodontal disease experiences.Knowledge transfer statementThis study is a reflection of Indonesian older people's subjective periodontal disease experiences. Therefore, the present study can be used to understand older people's perceptions, attitudes, behaviors, and experiences toward periodontal disease and how this disease may affect their quality of life. This study also highlights a widespread and misleading belief that oral problems related to periodontal disease are an inevitable part of aging in this study population.

Project description:Epidemiological surveys over the last 20 years show a steady increase in the amount of alcohol consumed by older age groups. Physiological changes and an increased likelihood of health problems and medication use make older people more likely than younger age groups to suffer negative consequences of alcohol consumption, often at lower levels. However, health services targeting excessive drinking tend to be aimed at younger age groups. The aim of this study was to gain an in-depth understanding of experiences of, and attitudes towards, support for alcohol related health issues in people aged 50 and over.Qualitative interviews (n = 24, 12 male/12 female, ages 51-90 years) and focus groups (n = 27, 6 male/21 female, ages 50-95 years) were carried out with a purposive sample of participants who consumed alcohol or had been dependent.Participants' alcohol misuse was often covert, isolated and carefully regulated. Participants tended to look first to their General Practitioner for help with alcohol. Detoxification courses had been found effective for dependent participants but only in the short term; rehabilitation facilities were appreciated but seen as difficult to access. Activities, informal groups and drop-in centres were endorsed. It was seen as difficult to secure treatment for alcohol and mental health problems together. Barriers to seeking help included functioning at a high level, concern about losing positive aspects of drinking, perceived stigma, service orientation to younger people, and fatalistic attitudes to help-seeking. Facilitators included concern about risk of fatal illness or pressure from significant people.Primary care professionals need training on improving the detection and treatment of alcohol problems among older people. There is also a compelling need to ensure that aftercare is in place to prevent relapse. Strong preferences were expressed for support to be provided by those who had experienced alcohol problems themselves.

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Exploring the quality of life issues in people with retinal diseases: a qualitative study.

Publications

Exploring the quality of life issues in people with retinal diseases: a qualitative study.

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