Psychometric properties of the full and short version Nursing Home Survey on Patient Safety Culture (NHSOPSC) instrument: a cross-sectional study assessing patient safety culture in Norwegian homecare services.

OBJECTIVES: Measure patient safety culture in homecare services; test the psychometric properties of the Nursing Home Survey on Patient Safety Culture (NHSOPSC) instrument; and propose a short-version Homecare Services Survey on Patient Safety Culture instrument for use in homecare services. DESIGN: Cross-sectional survey with psychometric testing. SETTING: Twenty-seven publicly funded homecare units in eight municipalities (six counties) in Norway. PARTICIPANTS: Five-hundred and forty health personnel working in homecare services. INTERVENTIONS: Not applicable. PRIMARY AND SECONDARY OUTCOME MEASURES: Primary: Patient safety culture assessed using the NHSOPSC instrument. Secondary: Overall perception of service users' safety, service safety and overall care. METHODS: Psychometric testing of the NHSOPSC instrument using factor analysis and optimal test assembly with generalised partial credit model to develop a short-version instrument proposal. RESULTS: Most healthcare personnel rated patient safety culture in homecare services positively. A 19-item short-version instrument for assessing patient safety culture had high internal consistency, and was considered to have sufficient concurrent and convergent validity. It explained a greater proportion of variance (59%) than the full version (50%). Short-version factors included safety improvement actions, teamwork, information flow and management support. CONCLUSION: This study provides a first proposal for a short-version Homecare Services Survey on Patient Safety Culture instrument to assess patient safety culture within homecare services. It needs further improvement, but provides a starting point for developing an improved valid and reliable short-version instrument as part of assessment of patient safety and quality improvement processes.

User Needs in the Development of a Health App Ecosystem for Self-Management of Cystic Fibrosis: User-Centered Development Approach.

BACKGROUND: Digital self-management in cystic fibrosis (CF) is foreseen as a means toward better understanding of the disease and its treatment and better adherence to the treatment. Mobile apps hold the potential to provide access to information, motivate, and strengthen compliance. However, to deliver high-quality apps, the development should be based on thorough knowledge about user needs. Empirical research on the user-centered development of mobile apps for health care is, however, still limited. OBJECTIVE: The aim of this research is to develop and evaluate an app ecosystem for self-management in CF. It targets not only those directly affected by CF but also parents and health care professionals involved in the treatment. This paper covers the first step of the design process that aims to analyze the context and the user requirements. The primary research question is as follows: what digital support has the potential to usefully support persons with CF and their caregivers in the CF care? To answer this question, we address two preliminary questions: what important factors in everyday life affect the care of persons with CF? and how is the CF care delivered today and what are the limitations of CF care services? METHODS: The overall research adopts a user-centered design approach in which future users are involved in the development process from the very beginning to ensure that the apps developed best suit the potential users. The research presented in the paper follows an interpretative case study research strategy seeking to understand the concerns and needs of persons with CF and their caregivers. Data were collected through semistructured qualitative interviews involving 74 participants in seven European countries and from internet forums. RESULTS: The results of the analysis phase show a strong need for individuality of the digital support, as well as for its adaptability to different contexts. The paper presents the concerns and needs of the participants in the study and extracts a set of relevant features for a self-management app ecosystem. Education, enzyme dosage calculation, nutrition management, treatment organization, health diary, treatment follow-up, practical guidelines for treatment, communication with doctors, and communication with peers are foreseen as useful features. CONCLUSIONS: The results indicate the readiness for self-management in the CF care even in countries that provide well-functioning health care services for CF care. The large diversity of user requirements identified reflects the crucial role user integration plays in developing apps for a chronic condition such as CF. The need for personalization stemming from the individuality of the patients and the need for communication with health care professionals support the idea of an app ecosystem for the self-management of CF.

Mainstream ICT Can Support Children and Adolescents with ADHD and/or Autism in Their Everyday Activities.

This exploratory case study investigated how ICT can support children with ADHD and/or autism and their families in their daily activities. We focus in particular on the suitability of mainstream technology for such support. Two cases are presented, and implications for practice are discussed. The findings indicate that mainstream ICT can be of assistance, but that its implementation can be challenging in particular in regards to elaborate technological setup routines, vulnerability to malfunction, and time needed for assessment, training and follow-up. The work continues in the ongoing R&D-project Is it possible?.

Access to tuberculosis services for individuals with disability in rural Malawi, a qualitative study.

Tuberculosis occurs in all populations, but with higher prevalence in poor contexts. Vulnerable groups, including individuals with disability, run a particular risk due to poorer access to information and health services. Studying access to tuberculosis services for vulnerable groups in poor contexts may provide useful insight into the quality of such services in low-income contexts. This article aims to present a contextual understanding of access to tuberculosis services for people with disabilities in one district in southern Malawi. A qualitative method with semi-structured interviews and site observations was applied. In all, 89 participants were interviewed: 47 persons with disability, 11 parents/guardians of youths with disability, and the remaining 31 comprising eight health workers, four community rehabilitation assistants and volunteers, and 19 leaders in the community.Our main findings are that lack of information and knowledge, and considerable confusion related to tuberculosis, its cause and how to protect oneself, are major barrier to accessing services. Disease awareness and personal risk perception are key factors in this regard. Further findings concerns the pathways to tuberculosis related health services, in particular having a test and completing the treatment. The combination of lack of knowledge and barriers in accessing tests implies substantial availability and access problems.It is of importance to understand the combined impact of individual, social, contextual, and systems barriers to fully address the complexity of accessing tuberculosis services for vulnerable groups in poor populations. Lack of disability specific strategies in the local health services may be part of the reason why individuals with disability to not access such services.

Seeking care for epilepsy and its impacts on households in a rural district in southern Malawi.

BACKGROUND: Epilepsy is a disability as defined in the 2012 Disability Act of the Government of Malawi. OBJECTIVES: This article explores the health-seeking behaviour of people with epilepsy in a rural town in southern Malawi and how having a person with epilepsy impacts on the households' productivity. METHOD: A snowball approach was used to identify persons with various forms of disabilities. The article is based on a bigger study carried out in Malawi which explored how persons with disabilities seek health care. In this bigger study, a total of 63 interviews were done with persons with disabilities or their guardians. Eight of the 63 interviews were with persons with epilepsy and this article is based on these interviews. RESULTS: The study found that persons with epilepsy seek both traditional and modern medicines to treat the condition. Informants mentioned that barriers to accessing western treatment include lack of medicines, congestion at health facilities, lack of knowledge about epilepsy, misdiagnosis by health workers and the belief that epilepsy caused by witchcraft cannot be treated by western medicine. The study also highlights the wider impacts of epilepsy on the household such as the failure of children to attend school, children dropping out of school, stigma and discrimination and households being driven deeper into poverty as a result of seeking care for members with epilepsy. CONCLUSION: The existing barriers to accessing treatment for epilepsy can be addressed by using a combination of public education, simple treatments and regular reviews. Ensuring constant availability of drugs for the treatment of epilepsy is key to effective treatment of the condition. This would contribute to closing the treatment gap for epilepsy as advocated by the Global Campaign against Epilepsy.

The evil circle of poverty: a qualitative study of malaria and disability.

BACKGROUND: This article discusses the link between disability and malaria in a poor rural setting. Global malaria programmes and rehabilitation programmes are organized as vertical and separate programmes, and as such they focus on prevention, cure and control, and disability respectively. When looking at specific conditions and illnesses, the impairing long-term consequences of illness incidents during childhood are not questioned. METHODS: The study design was ethnographic with an open, exploratory approach. Data were collected in Mangochi District in Malawi through qualitative in-depth interviews and participant observation. RESULTS: Despite a local-based health service system, people living in poor rural areas are confronted with a multitude of barriers when accessing malaria prevention and treatment. Lack of skilled health personnel and equipment add to the general burden of poverty: insufficient knowledge about health care, problems connected to accessing the health facility in time, insufficient initiatives to prevent malaria attacks, and a general lack of attention to the long term disabling effects of a malaria attack. CONCLUSIONS: This study points to the importance of building malaria programmes, research and statistics that take into consideration the consequences of permanent impairment after a malaria attack, as well as the context of poverty in which they often occur. In order to do so, one needs to develop methods for detecting people whose disabilities are a direct result of not having received health services after a malaria episode. This may be done through qualitative approaches in local communities and should also be supplemented by suitable surveys in order to estimate the problem on a larger scale.

Accessing community health services: challenges faced by poor people with disabilities in a rural community in South Africa.

Poor people with disabilities who live in poor rural societies experience unique problems in accessing health services. Their situation is influenced by multiple factors which unfold and interplay throughout the person's life course. The difficulties do not only affect the person with a disability and his or her family, but also impact on the relevant care unit. The barriers are rooted in a life in poverty, upheld and maintained by poverty-reinforcing social forces of the past and the present, and reinforced by the lack of the person's perspective of the health services. This article explores how difficulties may interact and influence access to and utilisation of health services, and how this may render health services out of reach even when they are available. The study reveals that non-compliance is not necessarily about neglect but could as well be a matter of lived poverty. The study was based on in-depth interviews with people with disabilities and family members, and semi-structured interviews with health personnel. The data analysis is contextual and interpretive. When offering health services to people with disabilities living in resource-poor settings, services should take into consideration the person's history, the needs, and the resources and abilities of the family group. Rethinking access to health services should transcend a narrow medical institutionalisation of health professional's training, and include a patient's perspective and a social vision in understanding and practice. Such rethinking requires health service models that integrate the skills of health professionals with the skills of disabled people and their family members. Such skills lie dormant at community level, and need to be recognised and utilised.

Accessing community health services: challenges faced by poor people with disabilities in a rural community in South Africa

Poor people with disabilities who live in poor rural societies experience unique problems in accessing health services. Their situation is influenced by multiple factors which unfold and interplay throughout the person's life course. The difficulties do not only affect the person with a disability and his or her family, but also impact on the relevant care unit. The barriers are rooted in a life in poverty, upheld and maintained by poverty-reinforcing social forces of the past and the present, and reinforced by the lack of the person's perspective of the health services. This article explores how difficulties may interact and influence access to and utilisation of health services, and how this may render health services out of reach even when they are available. The study reveals that non-compliance is not necessarily about neglect but could as well be a matter of lived poverty. The study was based on in-depth interviews with people with disabilities and family members, and semi-structured interviews with health personnel. The data analysis is contextual and interpretive. When offering health services to people with disabilities living in resource-poor settings, services should take into consideration the person's history, the needs, and the resources and abilities of the family group. Rethinking access to health services should transcend a narrow medical institutionalisation of health professional's training, and include a patient's perspective and a social vision in understanding and practice. Such rethinking requires health service models that integrate the skills of health professionals with the skills of disabled people and their family members. Such skills lie dormant at community level, and need to be recognised and utilised

[General practitioners' experiences with refugee patients]. / Fastlegens møte med flyktninger.

BACKGROUND: Refugees are likely to suffer from complex medical conditions due to persecution and exile. The symptoms may persist several years after the individual has fled his or her homeland. Knowledge of refugees' health condition in their receptive countries is insufficient. MATERIAL AND METHOD: Qualitative interviews with 12 general practitioners (GPs) in and around Oslo. A narrative approach was chosen for the analysis. RESULTS: The GPs' consultations with refugee patients seem to be characterised by uncertainty on the relevance of their refugee experience to their health condition. The GPs were reluctant to invite the patient to talk about traumatic experiences connected to their homelands, the escape and the exile. Rather, they express that unfamiliar culture and foreign language act as barriers to good communication between doctor and patient. Specialised health services seem neither to be accessible to the patients nor to be providers of clinical supervision for the GPs. INTERPRETATION: Cultural status seems to cover up experiences related to escape and exile. A lack of specialised health services seems to place the GP as a single actor in the medical service to refugee patients. The interviews revealed a need for instruction material adapted to the GPs' situation.