Designing rare disease care pathways in the Republic of Ireland: a co-operative model.

BACKGROUND: Rare diseases (RDs) are often complex, serious, chronic and multi-systemic conditions, associated with physical, sensory and intellectual disability. Patients require follow-up management from multiple medical specialists and health and social care professionals involving a high level of integrated care, service coordination and specified care pathways. METHODS AND OBJECTIVES: This pilot study aimed to explore the best approach for developing national RD care pathways in the Irish healthcare system in the context of a lack of agreed methodology. Irish clinical specialists and patient/lived experience experts were asked to map existing practice against evidence-based clinical practice guidelines (CPGs) and best practice recommendations from the European Reference Networks (ERNs) to develop optimal care pathways. The study focused on the more prevalent, multisystemic rare conditions that require multidisciplinary care, services, supports and therapeutic interventions. RESULTS: 29 rare conditions were selected across 18 ERNs, for care pathway development. Multidisciplinary input from multiple specialisms was relevant for all pathways. A high level of engagement was experienced from clinical leads and patient organisations. CPGs were identified for 26 of the conditions. Nurse specialist, Psychology, Medical Social Work and Database Manager roles were deemed essential for all care pathways. Access to the therapeutic Health Service Professionals: Physiotherapy, Occupational Therapy, and Speech and Language Therapy were seen as key requirements for holistic care. Genetic counselling was highlighted as a core discipline in 27 pathways demonstrating the importance of access to Clinical Genetics services for many people with RDs. CONCLUSIONS: This study proposes a methodology for Irish RD care pathway development, in collaboration with patient/service user advocates. Common RD patient needs and health care professional interventions across all pathways were identified. Key RD stakeholders have endorsed this national care pathway initiative. Future research focused on the implementation of such care pathways is a priority.

Non-use of Formal Health Services in Malawi: Perceptions from Non-users.

BACKGROUND: The study upon which this paper is based was undertaken to understand users' and non-users' perceptions concerning facilitators and barriers to equitable and universal access to health care in resource-poor countries such as Malawi. In this study, non-users of health services were defined as people who were not in need of health services or those who had stopped using them due to significant barriers. METHODS: A total of 80 interviews with non-users of health services were conducted in Rumphi, Ntchisi, Phalombe and Blantyre Districts of Malawi. Interviews focused on why informants were not using formal health services at the time of data collection. In order to identify non-users, snowballing was used health surveillance assistants, village headmen and community members also helped. One focus group discussion was also conducted with non-users of health services who were members of the Zion Church. RESULTS: Informants described themselves as non-users of health services due to several reasons: cost of health services; long distances to health facilities; poor attitude of health workers; belief in the effectiveness of traditional medicines; old age and their failure to walk. Others were non-users due to their disability; hence they could not walk over long distances or could not communicate effectively with health providers. Some of these non-users were complete non-users, namely members of the Zion Church and those who believed in traditional medicine, and they stated that nothing could be done to transform them into users of health services. Other non-users stated that they could become users if their challenges were addressed e.g. for those who were non-users of health services due to poor attitudes of health workers, they stated that if these health workers were transferred they would be able to access health services. CONCLUSIONS: Public health education targeting both health workers and non-users, ensuring a functional outreach program and addressing other health system challenges such as shortage of drugs and human resources would assist in transforming non-users into users of health services.

Attributions for admission to Zomba Mental Hospital: implications for the development of mental health services in Malawi.

Within Malawi, as in many other African countries, a variety of traditional and modern attributions exist regarding the cause of a person's mental disturbance, or their admission to a 'mental' hospital. It is argued that a good mental health service should consider the beliefs of the patients it seeks to serve. Consequently we studied 103 consecutive admissions to Zomba Mental Hospital in order to find out how patients explained their own admission to the hospital. Traditional attributions were the most common, followed by medical and then psychological attributions. Some patients explained their admission to the hospital by combining traditional, medical or psychological ideas. Content analysis of traditional attributions identified examples of "Tropical Tolerance" and the "Pull Down" phenomenon. The possible interactive nature of traditional, medical and psychological processes is discussed and it is suggested that traditional healers should be incorporated into 'modern' Malawian mental health services.

Managing the AIDS crisis in Africa: in support of pluralism.

Although substantial evidence is now accumulating that some African peoples readily accept advice and help about health from both modern medical and traditional sources, this has not yet happened with--what is arguably the major health problem in many part of Africa--AIDS. We asked 175 of Malawi's undergraduates what sources they judged to be credible with regard to information on preventing and clinically managing AIDS. While traditional healers were seen on average to be less credible than modern health professionals (doctors and nurses), there was no correspondence between credibility of traditional healers and modern health professionals. Thus a strong belief in the credibility of modern health professionals was not associated with low credibility ratings for traditional healers. Our findings provide further support for "tropical tolerance", especially as regards a pluralistic (modern and traditional together) approach to the prevention of AIDS. Given the over-stretched health services in Malawi and many other African countries, a pluralistic approach to AIDS prevention could be a credible and economic use of indigenous human resources.

Palliative versus curative beliefs regarding tropical epilepsy as a function of traditional and medical attributions.

Although epilepsy may be successfully managed with appropriate medication, in Africa epileptics are often vilified, sometimes because of traditional beliefs about the illness. We investigated the strength of beliefs which 112 rural Malawians held regarding traditional and medical explanations for the cause, treatment and cure of epilepsy. Those who believed in traditional causes of epilepsy also endorsed traditional treatment for it, though they did not see such treatment as curative. Those who believed in a medical treatment, did however see such treatment as curative. Knowledge of a local medical facility for the treatment of epilepsy was also positively related to the belief that epilepsy is curable. The ability of people to simultaneously hold medical and traditional beliefs about epilepsy was noted.

Sustaining health service developments in the 'Third World'.

An increasing number of 'third world' health development projects are proving to be unsustainable once foreign aid has been withdrawn. It is argued that this is partly due to the fact that such projects usually deliver health care free of charge rather than allowing communities to incorporate the costs of health care into their local economies. There should be more emphasis on health development projects paying for themselves from the outset. Such projects might also incorporate the extant community based infra-structure of traditional medicine through direct collaboration with its practitioners.