Illness Experiences Of People Research Articles

When the body is defective: An object relations informed narrative analysis of the illness experience of people affected by pulmonary hypertension

Pulmonary Hypertension (PH) can be considered as a paradigmat-ic disease for the understanding of repairing processes enacted to re-store internal regulation when the body is defective. The present study aims at providing an object relations informed narrative analy-sis of the illness experience of people affected by PH through a qualitative phenomenological analysis of the illness narratives of 12 adult Italian patients with PH. Four thematic areas (each consisting of three subthemes) were identified that respectively deal with pro-gressive stages of illness story: coping with early symptoms (mean-inglessness, minimization, self-blame), searching for a diagnosis (helplessness, burden, refusal of medical advice), reacting to diagno-sis (shock, resignation, acceptance of limitations) and facing the fu-ture (medical benefits, faith in God, support from patients' associa-tions). Findings make a significant contribution to the exploration of people with PH's several subjective challenges in coping with a de-fective body from symptom onset to after diagnosis.

Lay perceptions and illness experiences of people with type 2 diabetes in Indonesia: a qualitative study

ABSTRACT Background: Understanding perceptions and experiences of people with diabetes is important before establishing effective interventions. Previous research indicates that socio-cultural characteristics influence people’s views about diabetes. Objective: This study aimed at understanding diabetes from the perspective of people with diabetes in the Indonesian cultural context. Methods: Six focus group discussions involving 45 people with diabetes were conducted in East Nusa Tenggara and West Sumatera. The discussions were recorded, transcribed verbatim in their original language, translated into English, and analysed for common themes. Results: This study showed that participants tried to understand diabetes based on their personal experiences. They also saw the disease in a broader context of cultural identity and changes in their cultural environment. In coping with the disease, three strategies were identified: seeing it as beyond their control, normalising their condition, and resignation to God. People who used the first and second methods of coping tended to have a more negative response to diabetes treatment. People with strong religious beliefs coped more positively with diabetes. Conclusions: People with diabetes conceptualised the disease into their own narratives. These lay concepts influenced their strategies of coping and their behaviours in managing the disease. Understanding people’s lay perceptions and experiences are important to develop personalised strategies of diabetes management that may influence people’s responses to their disease and treatment.

It’s not just physical: a qualitative study regarding the illness experiences of people with facioscapulohumeral muscular dystrophy

Purpose: Little is known about the illness experiences of people with Facioscapulohumeral Muscular Dystrophy (FSHD). The aim of this study was to provide insight into the illness experiences of people with FSHD in order to tailor rehabilitation programs to individual needs and expectations.Methods: Twenty-five semi-structured interviews were conducted with people with FSHD. The interviews were audiotaped, transcribed and member checked. Computerized (MAXqda) and manual techniques were used for thematic data analysis.Results: Intra- as well as extra-individual aspects play a role in the illness experiences of people with FSHD. Integrating the consequences of the diagnosis and symptoms, coping with heredity and progenity, adjusting to a decreasing independence, and the accompanying changing relationship with one’s partner, are mentioned as intra-individual aspects. As extra-individual factors are the responses of the social environment, which was mentioned as well as used assistive devices, and maintaining or giving up work.Conclusions: Better understanding of the individual illness experiences, cognitions, and social context of people with FSHD can give health professionals tools to improve their care and give researchers direction for future studies to evaluate healthcare improvements from a holistic, patient-centred perspective.Implications for RehabilitationFSHD has a major impact on people’s lives. Besides the physical consequences, issues such as heredity, progenity, changing (intimate) relationships, social interactions and work should be addressed by rehabilitation professionals.Dependent on the timing of the diagnosis (early or later in life) people with FSHD could, in addition to medical consultation and physical therapy, profit from support by a social worker, occupational therapist and/or genetic Counselor for the above-mentioned themes to be addressed more extensively.It is relevant for rehabilitation professionals to become familiar with the personal characteristics and social circumstances of the patient before communicating the diagnosis and prognosis in order to individually tailor the content of the communication.

Building a Bright Future for Diabetes Care and Management by Writing Where It Hurts

Getting insight into the illness experiences of people with highly prevalent chronic conditions like diabetes is positively critical for all of us in the health world, whether we’re more on the clinical care side or more on the research side or experiencing things from the patient or family perspective. To illuminate these complex interplays between clinical and community elements of living well with diabetes and other chronic conditions, we need narratives and critical analysis of all aspects of illness experience. To promote sharing of these narratives—both from people with diabetes and from a diverse array of others living with chronic physical and mental health conditions as well as experiences within and between marginalized communi­ties—we started the Write Where It Hurts project. WWIH is a narrative-based blog and social media outreach hub focused on disclosure and critical analysis of experiences in health and the social world that are challenging and/or traumatic in nature.

Help-seeking in a context of AIDS stigma: understanding the healthcare needs of people with HIV/AIDS in China

Despite the rapid increase of HIV infection cases in China, the majority of this population have not yet accessed AIDS-related healthcare services. Most current research in China focuses on HIV prevention and disease control, and pays inadequate attention to the barriers facing HIV-infected individuals in accessing and adhering with healthcare services. This article, as part of a research project on the illness experiences of people with HIV/AIDS in China, aimed to explore these individuals' healthcare experiences, shedding light on the gaps between their needs and existing healthcare services. Data for this qualitative study were collected through individual in-depth interviews with 21 HIV-infected adults in China. The results of data analysis suggest that these individuals' healthcare experiences were greatly affected by social discrimination and the limitations of healthcare resources. While AIDS stigma has reduced the social resources available for this population, HIV-related health institutions were perceived by them as an indispensable source of social support. It is concluded that healthcare institutions, as one of the few places in which HIV-infected people are willing to disclose their HIV positive status, should incorporate social care into healthcare service development and delivery so as to facilitate this population's accessing healthcare services and to address their unmet needs that go beyond the conventional scope of health care. Improving the visibility of people with HIV/AIDS in health care will also have a long-term impact on their own well-being and on HIV prevention in China.

Illness Experience of People with Chronic Hepatitis B in Korea

The purpose of this study was to explore the experiences of people with chronic hepatitis B (CHB) in Korea. The specific aim was to identify major problems that people with CHB face and strategies that they are dealing with. A grounded theory method was utilized. The data were collected by individual in-depth interviews from 12 CHB patients from one of the major hospitals in Korea. After constant comparative analysis, a core category emerged as "illness management with self-reliance and will." Seven major strategies that were identified in dealing with the illness were maintaining receptive and positive attitudes; restraining excessive work and greed; searching for information; controlling illness information; adhering to practices for not spreading the viral disease; abstaining from alcohol and smoking and maintaining healthy eating habits; nd using alternative therapies. The outcomes that result from employing these strategies were identified as burden, depression and helplessness, stress for maintaining compliance, and dispirited interpersonal relationships. The results of this study suggest that most people with CHB in Korea have problems in psychosocial area. Thus health professionals need to provide not only informational support but also emotional one to improve quality of life of the people with CHB.