“The Things that are Inside of You are Horrible”: Children and Young Men with Duchenne Muscular Dystrophy Talk about the Impact of Living with a Long-term Condition

Duchenne muscular dystrophy (DMD) is an inherited, progressive and life-limiting neuromuscular disease that affects boys. During their lives, they experience a series of medical and surgical interventions. Research reported in this paper took place in England with 37 young men living with DMD and their families and explored their experiences of growing up, school, work, friends and family. In accordance with the social model of disability, this research was initially reluctant to dwell on the physiological aspects of living with a long-term, degenerative condition. We focused on social model concerns about the disabling barriers to the participants' participation in society, the disabling responses of professionals and barriers to achieving their aspirations. However, young people with DMD also wanted to talk about how living with the condition caused them considerable pain and discomfort. They also explained the emotional impact of medical and surgical interventions. They reported very few opportunities to discuss these matters with family members or professionals. We explore possible reasons for the absence of discussion about these issues and reflect on the consequences for both the young person and their family. We suggest that a reluctance to tackle the thorny issue of “body” and “impairment” in social science research with disabled children and young people means that important aspects of childhood disability are under-explored.     

Perceptions of people with mild intellectual disability and their family members about family-based social capital in the Netherlands

Families play an important role in the lives of people with intellectual disability as they do for everyone. However, little research has addressed the views of people with intellectual disability about their families by using self-report. Individual family members may hold different views about their family relationships. Therefore, we used a social capital theoretical perspective to examine (a) how perceptions of people with mild intellectual disability (MID) about their family support networks compare to those of their family members and (b) what factors are associated with any diverging perceptions. Randomly selected participants with MID (n = 111) and their family members (n = 111) were interviewed individually at their homes using the Family Network Method—Intellectual Disability (FNM-ID). The FNM-ID examines how people define their family groups and how they perceive existing supportive relationships within this group. The findings showed that participants with MID perceived that they had somewhat denser family networks (i.e., bonding social capital) than family members perceived them to have and were more likely to report bridging social capital. They reported more relationships that involved them providing support to family members. This difference in estimation was greater when the participant with MID displayed higher levels of externalizing behaviour problems. They also perceived more reciprocity in their relationships with family. No differences were found in the estimated numbers of significant family members and relationships in which support was received. It is concluded that people with MID and their family members have different perceptions on several aspects of the family support network. Family professionals and services should seek the views of people with intellectual disability and their family members when carrying out assessments or organizing supports.     

Experiences of Chinese Migrants Caring for Family Members With Schizophrenia in Australia

Little is known about the experience of Chinese migrants to Australia who are caring for a person with schizophrenia. The research was exploratory in nature, providing information on the health, help-seeking behaviors, burden, and caring experiences of Chinese carers of people with schizophrenia in Melbourne. Ethnic Chinese carers of people with schizophrenia were recruited. Health care or social service professionals were also interviewed to understand the context of Chinese migrants in seeking help for mental health problems and caring for someone with psychiatric illness. Recommendations for Chinese migrants facing mental health problems and challenges for social work practice are described.     

Development and initial validation of Perceived Rehabilitation Needs Questionnaire for people with schizophrenia

Purpose

The Perceived Rehabilitation Needs Questionnaires for people with schizophrenia (PRNQ-S), a culturally relevant and multi-faceted assessment tool for measuring perceived needs of people with schizophrenia, was developed and initially validated.

Methods

A total of 43 participants including people with schizophrenia, their caregivers, and mental health professionals were recruited for six rounds of focus group discussion to identify issues pertaining to rehabilitation needs of schizophrenia. Results were then used to develop PRNQ-S. An initial validation study among a convenience sample consisting of 219 people with schizophrenia was conducted to examine its psychometric properties.

Results

Exploratory Factor Analysis yielded a seventeen-factor solution accounting for 70.7% of the total variance which resulted in a 75-item PRNQ-S. The instrument had excellent internal consistencies and intra-rater reliability.

Conclusions

The PRNQ-S has been developed and psychometrically tested in Hong Kong. It can be used to assess perceived rehabilitation needs for individuals with schizophrenia in Hong Kong. Upon further validations, it may be applied in other Chinese societies such as Singapore and the mainland. Similar research methodology can also be used for assessing needs in other types of psychiatric disability groups.     

Interprofessional education in medical school

The opinions of entering medical students regarding interprofessional education (IPE), and their reasons, are described in this article. More female than male students favour IPE, 49 as compared to 25%. Students who endorse IPE give different reasons for their position than students who oppose it. The former group refer to increased communication and respect among health professionals, increased knowledge about mutual roles and function, greater equality among members of the health team and improved patient care. The opposing group fear that IPE would lower the quality of education by increasing class size and slow the pace of instruction to accommodate students with limited scientific backgrounds. Students also protest against having to study irrelevant subjects and acquire irrelevant skills. The opposing group is concerned primarily with IPE's effect on medical students; the group in favour is concerned more with the effect on patients and interprofessional relations. It seems that opinions about IPE are part of a basic attitudinal structure that medical students bring with them when they enter medical school. The implications for IPE in medical school are discussed.     

An investigation of the experiences of hearing-impaired people undergoing medical examinations in health-checkups

OBJECTIVE: The end purpose of this research is to ascertain modifications that are needed in order to provide an environment in which hearing-impaired people can receive health-checkups equivalent to those received by people with normal hearing. The problems experienced by hearing-impaired person when undergoing a health consultation was thus investigated and differences in the requirements of deaf people and those with impaired hearing were also examined. METHODS: Questionnaires were completed by 250 members of the Tokyo Federation of the Deaf and 100 members of the Tokyo Association for the Hard of Hard of Hearing. Areas investigated included, the person's history of health-checkups, aspects of medical examinations found to be inconvenient, communication that occurred during medical examinations, communication that a hearing-impaired person experts of a hospital, and methods by which hospitals could ensure information was understood. Responses to questionnaires were compared between the members of Tokyo Federation of the Deaf and the members of Tokyo Association for the Hard of Hearing. RESULTS: Of 151 subjects enrolled in the present study, 56 were male and 96 were female (2 did not reveal their gender). Respondents were aged between 21-85 years (mean 54.8 years), with 50.3% receiving an annual health-checkup. The problems described by respondents in the context of a medical examination included; 1) not being able to recognize when their turn to be seen had arrived, even if called by name, 2) not being able to understand medical information and instructions given by healthcare staff. In order to ensure they understood the information given, respondents described measures that they wished to see implemented. These differed between the 2 organizations, with members of the Tokyo Federation of the Deaf wanting information to be provided in both sign language and written form, whereas members of the Tokyo Association for the Hard of Hearing wished only for written information. CONCLUSIONS: Compared to people with normal hearing, relatively few hearing-impaired people receive health checkups. In order to ensure that hearing-impaired people can understand the information given, and therefore receive maximal health benefits, while reducing the risk of potentially harmful mishearing of advice, both sign language and written information are required.     

Clinical Trial and Research Study Recruiters’ Verbal Communication Behaviors

The lack of accrual to research studies and clinical trials is a persistent problem with serious consequences: Advances in medical science depend on the participation of large numbers of people, including members of minority and underserved populations. The current study examines a critical determinant of accrual: the approach of patients by professional recruiters who request participation in research studies and clinical trials. Findings indicate that recruiters use a number of verbal strategies in the communication process, including translating study information (such as simplifying, using examples, and substituting specific difficult or problematic words), using linguistic reframing or metaphors, balancing discussions of research participation risks with benefits, and encouraging potential participants to ask questions. The identification of these verbal strategies can form the basis of new communication protocols that will help medical and nonmedical professionals communicate more clearly and effectively with patients and other potential participants about research studies and clinical trials, which should lead to increased accrual in the future.     

The care receivers perspective: How care‐dependent people struggle with accepting help from family members,friends and neighbours

In many countries in north‐western Europe, the welfare state is changing, and governments expect a great deal of informal care. In the Netherlands, citizens are also increasingly expected to rely on informal instead of professional care. In this study, we aim to determine to what extent Dutch care‐dependent people want to rely on social network members and what reasons they raise for accepting or refusing informal care. To answer this question, we observed 65 so‐called ‘kitchen table talks’, in which social workers assess citizens’ care needs and examine to what extent relatives, friends and/or neighbours can provide help and care. We also interviewed 50 professionals and 30 people in need of care. Our findings show that a great deal of informal care is already given (in 46 out of 65 cases), especially between people who have a close emotional bond. For this reason, people in need of care often find it difficult to ask their family members, friends or neighbours for extra assistance. People are afraid to overburden their family members, friends or neighbours. Another reason people in need of care raise against informal care is that they feel ashamed of becoming dependent. Although the government wants to change the meaning of autonomy by emphasising that people are autonomous when they rely on social network members, people who grew up in the heyday of the welfare state feel embarrassed and ashamed when they are not able to reciprocate. Our findings imply that policymakers and social professionals need to reconsider the idea that resources of informal care are inexhaustible and that citizens can look after each other much more than they already do. It is important that social policymakers approach the codes and norms underlying social relations more cautiously because pressure on these relations can have negative effects.     

Position of the American Dietetic Association: Food and Water Safety

It is the position of the American Dietetic Association that the public has the right to a safe food and water supply. The Association supports collaboration among food and nutrition professionals, academics, representatives of the agricultural and food industries, and appropriate government agencies to ensure the safety of the food and water supply by providing education to the public and industry, promoting technological innovation and applications, and supporting further research. New food and water safety issues evolve as the environment changes. Food and nutrition professionals should collaborate with food and agriculture industries and members of the medical community in a joint effort to address these issues. Recent food- and waterborne illnesses have occurred in new settings and/or unique foods not traditionally associated with foodborne illness outbreaks. New issues associated with food safety and security that have emerged support the need for continued education and research. Government programs have developed powerful tools such as FoodNet and PulseNet to detect food- and waterborne illness outbreaks in the United States. These government programs have provided the data to enhance public policy and educational programs such as FightBac! Mandatory and voluntary adoption of Hazard Analysis Critical Control Points in the foodservice and processing industries have contributed to a decrease in foodborne illness outbreaks from traditional foods and some microorganisms usually associated with foodborne illnesses. Food and nutrition professionals are positioned to provide food and water safety education in community, clinical settings, and foodservice operations and food industries. With an aging population and an increased number of people at risk due to medical conditions for food- and waterborne illness, food and nutrition professionals should be involved in collaborative food and water safety issues in educational, research, and policy agenda settings. As the food and nutrition experts, food and nutrition professionals must assume a major role in food and water safety education and research.     

Social network transactions of psychiatric patients.

In this research we examine self-reported social network transactions of former psychiatric inpatients residing in different types of housing in the community. Unlike earlier research, we found considerable reciprocity in network transactions with family and friends. Only professionals provided more support than they received from patients. Providing emotional support to others was positively correlated with positive affect, community integration, and mastery. Respondents reported more supportive than unsupportive transactions with network members and more supportive transactions with friends than with family or professionals. Finally, residents of supportive apartments and group homes provided and received support more frequently than residents of board-and-care homes. We discuss the results in terms of their implications for policy and future research.     

Schizophrenia, substance use disorders and medical co-morbidity

OBJECTIVES: This study compared medical treatment costs of adults with schizophrenia to adults with both substance use disorders and schizophrenia. METHODS: This cross-sectional observational study used a paid claims data base to identify 6884 adults treated for schizophrenia. Twenty percent of these also had substance use disorder. We report the costs and likelihood of hospitalization for eight common medical diseases, and the categories of injuries and poisoning, and ill defined conditions. Multivariate analyses were used to adjust rates of treatment for age and sex differences in the comparison groups. RESULTS: There were higher rates of treatment for five of the eight medical disorders, higher treatment costs for two of the medical disorders and much higher costs for psychiatric treatment among those with comorbid substance use disorders. Both groups had high rates of treatment in the categories of injury and poisoning and ill defined conditions. CONCLUSIONS: Closer working relationships among mental health and medical professionals are needed to care for those with schizophrenia and substance use disorders: first, greater attention to the treatment of substance use disorders may improve the health status of those with schizophrenia, reduce their costly medical and psychiatric care and stabilize their psychiatric condition, and second, continuity of care among professionals may promote willingness to seek medical attention or alleviate misunderstandings when adults with schizophrenia present with medical problems.     

The benefits and difficulties of academic collaboration

People working in academia and in hospice organizations can help each other succeed while serving the needs of the people in hospice care. This is especially important in times of tight budgets for all concerned. Hospice organizations would benefit from educating themselves about research and participating as partners in research activities. Collaborating researchers must be willing to discuss their research with members of hospice organizations and explain how it is to be structured, conducted, and how it can improve services. Researchers can make scientific investigation and its findings more user-friendly and understandable. The hospice organization can set up forums that promote dialogue between hospice professionals and researchers at meetings, conferences, and symposia that will benefit the academic group, hospice organization, and, ultimately, people in hospice care.     

An exploration of how health care professionals understand experiences of deafness

Findings from recent deaf education intervention programmes with health care professionals emphasise the importance of sociocultural dimensions of medicine, pointing to the need to further investigate health professionals’ current understandings of deafness. Situated within a social constructionist and critical realist framework, we investigated health professionals’ understandings of deafness and experiences of providing health services in Australia to d/Deaf people. Through an inductive thematic analysis of 18 individual interviews with medical or allied health professionals, we identified an overarching theme we labelled hearingness as privileged, whereby professionals accounted for the quality of the health services available to d/Deaf people in Australia. The professionals recognised the services as not good enough and, through relating their efforts to do the best they can, and describing how the situation could always be better, it was evident that the professionals were negotiating a larger health system that disadvantages the needs of d/Deaf people for the needs of people with hearingness. We discuss the implications of working within a system that privileges hearingness.     

What knowledge-accessing modes tell administrators about interdisciplinary crises and conflicts.

In hospitals administrators work with two major groups of medical professionals: physicians and nurses. Together, these three groups of professionals are primarily responsible for the care of patients. The quality of the service they provide is dependent on the working relationships among these disciplines. Potentially, the more harmony among administrators, physicians, and nurses, the better care patients can receive. The research reported in this article addresses the issue of interdisciplinary misunderstanding among these groups of professionals. The research was premised on the assumption that hospital administrators, physicians, and nurses differ in the way they access knowledge. That is, administrators, physicians, and nurses access knowledge in dissimilar ways and, by doing so, set the stage for crises and conflicts. Using a standardized instrument to assess knowledge-accessing modes, data were collected from samples of health administration, medical, and nursing students. The data indicated that the three groups did differ in the way they accessed knowledge. The individual discipline profiles generated from the data also revealed a finding common to the three disciplines, a finding may help resolve a very real problem for hospital patients. Based on the research results, the article discusses ways that administrators may be able to prevent crises and conflicts and enhance harmonious relations among the three disciplines, and thereby improve patient care. Avenues for further research are also suggested.     

Recommendations to improve the patient experience and avoid bias when prenatal screening/testing

While prenatal screening and testing have expanded substantially over the past decade and provide access to more genetic information, expectant parents are more likely to describe the diagnosis experience as negative than positive. In addition, the conversations that take place during these experiences sometimes reflect unconscious bias against people with disabilities. Consequently, an interdisciplinary committee of experts, including people with disabilities, family members, disability organization leaders, healthcare and genetics professionals, and bioethicists, reviewed selected published and gray literature comparing the current state of the administration of prenatal testing to the ideal state. Subsequently, the interdisciplinary team created recommendations for clinicians, public health agencies, medical organizations, federal agencies, and other stakeholders involved with administering prenatal screening and testing to create better patient experiences; conduct training for healthcare professionals; create, enforce, and fund policies and guidelines; and engage in more robust data collection and research efforts.     

Users' understanding of medical knowledge in general practice

Much emphasis is now being placed on the quality of medical care, and various ways are being developed to assess the medical knowledge of general practitioners. It is increasingly recognised that the users perspective on health care is important, and that the views of health care professionals do not and cannot represent patients' views. In order to explore whether or not a large-scale survey, which asked people to rate their doctors' medical knowledge, yielded meaningful results, this paper draws on findings from a study involving in-depth interviews with 26 lay people who had already completed the General Practice Assessment Survey questionnaire. When completing the questionnaires, patients had been asked to consider the 'technical care' provided by their general practitioners and to make a judgement about their doctors' medical knowledge. When interviewed at a later date, some people explained that they defined medical knowledge as knowledge of 'disease and treatments', while others defined it as knowledge of the 'whole person', and some defined a knowledgeable doctor as one who would acknowledge uncertainty. Patients appeared to have made judgements about their general practitioners' medical knowledge based on many factors, such as their experience of illness, perceptions of professional training, contact with other health care professionals in both primary and secondary care, and exposure to the media. The paper discusses the nature of medical knowledge, and concludes that although patient surveys are useful for the evaluation of interpersonal care and access to care, asking patients about their general practitioners' medical knowledge may yield invalid results. This is partly because patients defined medical knowledge in different ways, and partly because it appears that relatively few patients had enough knowledge about their own particular illnesses, or about possible alternative treatments, to make informed judgements about their general practitioners' medical knowledge.     

The clinician-scientist: professional dynamics in clinical stem cell research

Clinical applications of biomedical research rely on specialist knowledge provided by professionals who straddle research and therapy, and possess both medical and scientific expertise. To date, this professional group remains under-explored in sociology. Our article presents a case study of clinician-scientists working in stem cell research for heart repair in the UK and Germany who are engaged in double-blind randomised clinical trials using patients' own stem cells. The analysis draws on sociological and medical literature, interviews and ethnographic fieldwork to analyse the experiences and self-rationalisations of a small number of clinician-scientists and the ways in which these professionals portray, explain and justify their role in the wider clinical research environment. We examine our participants' views on the clinical trials they conduct, the challenges they encounter and the ways through which they negotiate a complex disciplinary terrain, and argue that the recent clinical implementation of stem cell research brings clinician-scientists to the fore and provides a renewed platform for their professional legitimisation. The article helps increase our understanding of how randomised clinical trials are involved in consolidating the individual status of actors and the collective standing of clinician-scientists as leaders of change in translational medicine.     

The Participation of Disabled Children and Young People: A Social Justice Perspective

There is an increasing expectation that children, young people and their parents should participate in decisions that affect them. This includes decisions about their health and social care and collective or public decisions about the way in which such services are designed, delivered and evaluated. Indeed this has become a policy priority across the United Kingdom. The participation of disabled children and young people, however, has been slow to develop in the United Kingdom and concerns have been expressed about progress in this area. Drawing on the results of an Economic and Social Research Council-funded, mixed-methods study, the aim of this article is to explore the participation of disabled children and young people through a social justice lens. Participants, recruited by purposeful sampling, included 18 disabled children and young people, 77 parents and 90 professionals from one health and social care trust in Northern Ireland. There were four phases of data collection: surveys to parents and professionals, parent interviews, interviews with children and young people using creative and participatory techniques, and a focus group with professionals. Results showed that for most disabled children and young people, decision-making was firmly grounded in a family-centred model. However, when children and young people were drawn into participatory processes by adults and recognised as partners in interactions with professionals, they wanted more say and were more confident about expressing their views. Choices, information and resources were at times limited and this had a key impact on participation and the lives of these children, young people and their parents. The article concludes by exploring implications for further research and practice. The need for a two-pronged, social justice approach is recommended as a mechanism to advance the participation agenda.