Being Calm When It Comes—An Illness Narrative Study of Children with Cancer

Public awareness of patient rights and responsibilities is essential for health promotion. However, there is limited evidence on public awareness of such rights and responsibilities. We assessed the socio-demographic correlates of public awareness of the patient rights and responsibilities enshrined in the Ghana Patient Charter. We employed a cross-sectional design and administered a household survey to 400 adult residents of the Sagnarigu Municipality of Ghana. Respondents were selected through multi-stage sampling. The questionnaire elicited yes or no responses to questions on respondents’ recognition of specific patient rights and responsibilities. We ran binary logistic regression models to determine the socio-demographic correlates of awareness of patient rights and responsibilities. The results revealed the mean score of overall awareness as 50.05% ± 37.20% for patient rights and 62.55% ± 40.21% for patient responsibilities. The public showed low awareness of those rights and responsibilities concerning information flow within the health system. Peri-urban residential status, tertiary education, lower health status (self-rated) and health insurance membership were significantly (Adjusted Odd Ratio (AOR)>1, p < 0.05) associated with higher likelihood of awareness of patients’ rights and responsibilities. Higher age and Islamic religion were significantly (AOR<1; p < 0.05) associated with lower likelihood of awareness of patient rights and responsibilities, respectively. We conclude that low health consciousness and inadequate access to health information contributed to the low awareness of patient rights and responsibilities. To promote awareness of patient rights and responsibilities, advocacy and public education using the mass media and community engagement should be intensified especially within rural and Muslim-dominated communities.

Aim and objectives To study the awareness and practice of Patient rights and to compare the same between general and private ward hospitalized patients of a selected hospital. Materials and methods Descriptive research approach was adopted wherein data was collected from 120 hospitalized patients, i.e. 60 from general and 60 from private ward using a structured questionnaire. It was then analyzed by frequency, percentage and significance test to interpret the awareness and practice of patient rights in the hospital. Results The study reveals that awareness of patient rights was high in most of the cases. There was 71% awareness about the right to confidentiality, 67% awareness of the right to grievance redressal, 65% awareness about the right to be informed, 58% awareness of the right of access to healthcare and 55% awareness about the patient's right to choice of care and decision making. But low (39%) awareness was noted in case of patient's right to informed consent. With regards to practice of patient rights, it was seen that certain rights were well-practiced like 95% practice of the right of access to healthcare, 89% practice of the right to confidentiality and 64% practice of the right to choice of care and decision making. But relatively lower percentage of practice was observed for right to be informed (49%), right to informed consent (44%) and the right to grievance redressal (21%). There was significant difference in the level of awareness and practice of patient rights among private and general ward patients in most of the rights. Conclusion The study was vital in finding that most respondents were aware of patient rights. So also, most of the patient rights were practiced in the hospital in varying degrees, while a few needed immediate rectification and management action. How to cite this article Fernandes AB, D'Cunha S, Suresh S. Patient Rights: Awareness and Practice in a Tertiary Care Indian Hospital. Int J Res Foundation Hosp Healthc Adm 2014;2(1):25-30.

Purpose: The Rapid Assessment of Disability (RAD) questionnaire was developed to provide governments and development agencies with an appropriate instrument to determine the prevalence of people with disability within their target populations, and to design and evaluate the effectiveness of disability inclusive activities in addressing their priorities and needs. The RAD questionnaire was developed using two conceptual frameworks: the United Nations Convention on the Rights of Persons with Disabilities (UNCRPD), and the International Classification of Functioning, Disability and Health (ICF). Existing instruments were reviewed to inform the structure and content of the RAD questionnaire. The RAD questionnaire that was developed for field testing in Bangladesh comprised both a household questionnaire and a questionnaire for individuals within each household, with 5 sections: 1) Demographic information, 2) Assessment of functioning, 3) Awareness of rights of people with disability, 4) Well-being and quality of life, 5) Participation in the community. Methods: Prior to field-testing the RAD questionnaire in Bangladesh, a qualitative study was conducted to ensure the relevance of the questionnaire in the context of a developing country. In-depth interviews with 9 people with disability and a focus group of 8 parents of children with disability were conducted in Dhaka, Bangladesh. Results: Qualitative findings highlighted factors relevant to the lives of people with disability in Bangladesh, including discrepancies between the awareness and attainment of rights for people with disability, the wellbeing of people with disability and their families, as well as numerous barriers to full participation in their community. While the findings confirmed that the design and content of the questionnaire reflected all these aspects, some changes were made to the items in the questionnaire to ensure that it reflected the views of people with disability from the context of a developing country. Conclusions and Implications: This qualitative study was an important step in the development of the RAD questionnaire as it helped to achieve its aim - namely, to establish the prevalence of disability and to assist in the design and evaluation of disability inclusive interventions in the setting of a developing country.

Informed by a mothering-disruption framework, our study examines the illness narratives of women cancer survivors living in Southern Central Appalachia. We collected the stories of twenty-nine women cancer survivors from northeast Tennessee and southwest Virginia using a multi-phasic qualitative design. Phase I consisted of women cancer survivors participating in a day-long story circle (n=26). Phase II consisted of women cancer survivors who were unable to attend the story circle; this sample sub-set participated in in-depth interviews (n=3) designed to capture their illness narratives. Participants’ illness narratives revealed the presence of: (1) mothering-disruption whereby cancer adversely impacted the mothering role; and (2) mothering-connection, whereby the cancer experience motivated mother-survivors. Participants’ illness narratives reflected that the role of mother was the preeminent role for mother-survivors and whenever there was oppositional tension between the roles of mother and survivor, the women-survivors seemed to linguistically relocate away from the survivor role and toward the mothering role. As a result, women-survivors seemingly rejected medicalization of their identities by emphasizing their mothering responsibilities, something we term motherizing.

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Marked variations in the incidence of particular types of childhood cancer exist between countries. We report on the geographic variation in the occurrence of childhood cancer in Jordan. Cases were identified from the Jordan National Cancer Registry. We collected data on age, sex, type, primary site, and stage of cancer. Tumor topography and morphology were coded according to the accepted international standard. For all cases registered, 95.2% were histologically diagnosed. Incidence rates were calculated as annual rates per million population. The denominator is the 1997 estimate of the childhood population at ages 0-4, 5-9, and 10-14 years. There were 646 registered primary malignant neoplasms during the three-year study period (1996-1998). The annual incidence rate for all types of cancer combined was 113 per million children. The rate among children less than 5 years of age was 134.5 per million, for 5-9 years it was 97.8 per million, and for 10-14 years it was 104.1 per million. Overall, the age-standardized annual incidence rate was 113.8 per million. The most common diagnostic group was leukemia, accounting for more than a third of all cases, followed by brain tumors and lymphoma. The highest rate was in the capital, Amman. The pattern of childhood cancer in Jordan seems to be generally similar to other countries in the region, particularly the observed excess of lymphoma. Geographical variations in childhood cancer exist in Jordan and could be partly explained on the basis of lower detection or reporting, or both, in certain locations.

Despite the increasing burden of breast cancer in the developing world, there is a misunderstanding of the complex and multifaceted relationship between culture and cancer, particularly breast cancer. Hence, a dichotomy of illness narratives exists due to differential meaning making concerning breast cancer. While clinicians always recommend biomedical treatment, women with breast cancer often seek alternative treatment pathways. To explore the experiences of women with breast cancer and clinicians in Nigeria on the dichotomy in the illness narratives. This qualitative study used in-depth interviews and focus group discussion to explore the experiences of 22 women with breast cancer and 7 clinicians in Nigeria on the dichotomy in the illness narratives using grounded theory method analysis. This study revealed that many women living with breast cancer (WLBC) hold health beliefs that are contradictory to the biomedical norm. They mostly sought treatment based on the perceived aetiology of breast cancer. The treatment pathway follows faith and traditional healing as alternatives or sometimes in combination with biomedicine. WLBC reported a constant fear of biomedical treatment, perceived to be harmful to women's sexuality, fertility and body image. Hence, after perceived treatment failure from alternative care, biomedical care becomes the last resort, usually at an advanced stage of breast cancer, often responsible for poor prognosis. There is a dichotomy of illness construction between sufferers and health practitioners. To guide women with breast cancer on the path of care, modern care practitioners should consider some cultural norms and practices without compromising professional ethos.

Background: Illness narratives with meaningful, competent and targeted content have been shown to provide useful guides for patient decision-making and have positive influences on health behaviors. The use of narratives in decision aids can confer a sense of structure, plot and context to illness experiences and help patients make treatment decisions that feel sensible, informed, and transparent. Aim: This paper presents narratives of suffering and healing from patients and their caregivers with advanced heart failure who engaged in decision-making regarding Left Ventricular Device Assist (LVAD) treatment. Methods: Narratives were collected from in-depth interviews with patients who accepted (n = 15) versus declined (n = 15) LVAD implant, LVAD candidates who had received education about LVAD and were in the process of making a decision (n = 15), and caregivers (family or significant others) of LVAD patients (n = 15). Results: Participants shared “restitution” narratives that most commonly conveyed a shift from pre-implant physical suffering and “daily hell,” fatigue so intense it “hurts,” along with emotional suffering from inability to engage with the world, to post-implant improvements in mobility and quality of life, including positivity and family support, adaptation on a “journey,” “getting one’s life back” and becoming “normal” again. Conclusion: For LVAD patients, other patients’ illness narratives can help to give meaning to their own illness and treatment experiences and to more accurately forecast treatment impacts on lifestyle and identity. For clinicians, patient narratives can enhance patient–practitioner communication and understanding by highlighting perspectives and values that structure patients’ clinical experiences.

This study is focused on the pneumoconiosis workers’ illness narratives in Bashan Town in Chongqing. In-depth interviews were used to gather their illness narratives, and a “counterstory” framework was adopted for the critical analysis of the resistance of these texts to the dominant discourse. The results showed that these pneumoconiosis counterstories to be legitimacy narratives that sought four types of legitimacy: medical, suffering, moral, and public. Three opposing identity relations were explored in these narratives: qualified vs unrecognized pneumoconiosis patients, bearers of great suffering vs complainers without cause and neglected within the pneumoconiosis group vs Invisible pneumoconiosis. These identity relations strengthened the pneumoconiosis workers’ confrontation with the illegitimacy of the main social narrative, and they were used in the attempt to construct a legitimized self-identity. The study also identified three narrative strategies used to resist the oppressive dominant narrative, they are revelation, refusal and contestation. Finally, the author proposed that these counterstories consisted a weapon for the weak to voice their legitimacy concerns and offered recommendations for the prevention and treatment of pneumoconiosis.

Chapter 1 Medical technologies, the lifeworld and normality: An introduction Sonja Olin Lauritzen & Lars-Christer Hyden Chapter 2 Learning to talk and talking about talk: Professional identity and communicative technology Lars-Christer Hyden & Antje Lumma Chapter 3 What's in a Pap smear? Biology, culture, technology and self in the cytology laboratory Anette Forss Chapter 4 Gyneacologists and geneticists as storytellers: Disease, choice and normality as the fabric of narratives on pre-implantation genetic diagnosis Kristin Zeiler Chapter 5 The normal baby-to-be: Lay and professional negotiations of the ultrasound image Ann-Cristine Jonsson Chapter 6 A normal pregnancy? Women's experiences of being at high risk after ultrasound screening for Down syndrome Sonja Olin Lauritzen, Susanne Georgsson A-hman & Sissel Saltvedt Chapter 7 Imaging technology and the detection of 'cold aneurysms': Illness narratives on the Internet Gunilla Tegern Chapter 8 Phenomenology listens to Prozac: Analyzing the SSRI revolution Fredrik Svenaeus

In this study we explore the lived experience of emotional labour of ten hospitality employees and tries to get a deeper understanding of how they interpret it in their life world. In-depth interviews were conducted with the front-line employees 4,5-star hotels and high-end restaurants in the city of Pune in Western Indian state of Maharashtra. Using Interpretative Phenomenological Analysis (IPA) to analyse the data, the findings threw up some convergent as well as divergent themes about how the employees interpret the experience in their life world and how they feel about it. Emotional maneuverability, ambivalent disposition, spillover of emotions emerged as some of the key interpretations of emotional labour as a lived experience. It also emerged that a collective effort needs to be put in place to help the employees cope with the consequences of emotional labour. This study can help hospitality industry leaders with a fresh perspective about understanding and tackling the negative consequences of emotional labour amongst their employees.

Objective: To explore the impact of participating in undergraduate teaching in general practice for patients with common mental disorders.Design: Questionnaire survey and qualitative in-depth interviews.Setting: Community based undergraduate teaching programme...

Polycystic ovary syndrome (PCOS) is a chronic metabolic disorder impacting women of reproductive age, with its prevalence consistently increasing in China. Grounded in the biographical disruption framework, this study explores how patients navigate disruptions and oscillating return processes through in-depth interviews with 16 young women diagnosed with PCOS. Three primary sources of disruptions emerged through thematic analysis of patients' illness narratives: conflicting explanations of attributions between biomedical discourse and personal experiences; embodied identity disruptions associated with menstrual and appearance-related symptoms; and negotiations over anticipated futures centred on reproductive expectations. Modern medical and cultural discourses often pathologise PCOS as a failure of femininity and personal responsibility, intensifying identity tensions and moralising illness. In response, participants employ various strategies to reinterpret causation, symptoms, and future concerns, regain narrative control, and repair their biographies. These strategies unfold through nonlinear and oscillating trajectories shaped by life stages, social networks, and cultural expectations. The study highlights how the lived body of PCOS patients becomes a site of conflict and negotiation between self, illness, and society. By foregrounding the intersection of illness, embodied orientations, and cultural context, this research expands the scope of biographical disruption theory, emphasising both gendered embodiment and temporality in chronic illness narratives.

Breast cancer often involves uniquely mutilating treatments and is frequently assumed to produce problems specifically associated with feminine identity: body image and sexuality. But empirical research to support this assumption is sometimes mixed and nearly always quantitative in method. This study examines breast talk--specific references to breasts and breast cancer in women's illness narratives--collected in 20 open-ended, in-depth interviews with 17 White, middle-class survivors in Maine. Participants varied in age, marital status, motherhood sexual orientation, family history of breast cancer, medical diagnoses, and treatments. Phenomenological analysis of the breast talk resulted in four interrelated clusters of meanings: the medicalized breast, the functional breast, the gendered breast, and the sexualized breast. The analysis suggests both greater and fewer problems with femininity, sexuality, and body image than presumed by much research, and it urges researchers not to reproduce the objectifications and stereotyping of sexist culture.

This qualitative research delves into the dynamic intersection of legal education, community welfare, social justice, and human rights in rural areas of Central Java, Indonesia. Through in-depth interviews, focus group discussions, and thematic analysis using NVivo software, the study explores the perceptions, experiences, and practices of stakeholders involved in initiatives aimed at promoting social justice and human rights. Key themes that emerged include the importance of legal literacy in enhancing awareness of rights, challenges in accessing justice, the transformative impact of empowerment and participation, the need for holistic approaches that address intersecting social challenges, and the vital role of collaboration and networking among diverse stakeholders. The findings shed light on the complexities and opportunities inherent in promoting social justice and human rights in rural contexts, providing valuable insights for the development of inclusive and sustainable interventions.