Consumer issues in navigating health care services for type I diabetes

• Despite increasing interest in consumer awareness and participation in health care service delivery, there has been little exploration of consumer views in relation to services for people with type I diabetes. • The purpose of this qualitative exploratory study was to identify strategies people with type I diabetes used to access health services and the barriers they perceived in accessing the services they needed. • Data gathered in semi-structured interviews revealed that consumers experience significant barriers when navigating the health care system. • Three dominant themes were identified. They relate to access to specialist medical skill, to the transition from teenager to young adult and to pre-pregnancy and obstetric care. • Directions for change in service delivery and policy development are discussed.

The transition from pediatric to adult health care services for young adults with a disability : an ethical perspective

Young children with disabilities and their carers or parents tend to form a long-term dependent relationship with a paediatrician throughout childhood At some stage when the young person with a disability reaches early adulthood, the relationship is severed This paper draws upon recent research undertaken by the authors that describes the difficulties experienced by young people with disabilities as they go through the transition from paediatric care to adult mainstream health care services. The purpose of this article is to present the argument that the dependent, paternalistic relationship that tends to exist between young people with disabilities (and/or their carers) and paediatricians throughout childhood does not facilitate the successful negotiation of adult mainstream health care services, nor optimally promote the well-being of these young people with disabilities. It is proposed that the promotion of autonomy (or self-determination) via a well planned transition program will increase the likelihood that young adults with disabilities and/or their carers will be empowered to successfully negotiate the current mainstream health care system in Australia, and will enhance the well-being of young adults with disabilities.

The impact of knowledge and attitudes on access to eye-care services in Cambodia

Purpose: To investigate how knowledge and attitudes influence the access to eye-care services in Takeo Province, Cambodia.

Design: A cross-sectional survey (n=600).

Methods: 30 villages were randomly selected. Groups included: >50 years, 30–49 years, and parents with children <5 years. A newly developed Knowledge, Attitude and Practice in Eye Health (KAP-EH) questionnaire about knowledge and treatment of eye diseases, practices and attitudes to accessing services was used to interview respondents. Descriptive analysis, including Chi square and logistic regression tested for associations with sub-groups of gender, age group, education and self-reported type of disability.

Results: The proportion of respondents who reported having knowledge of specific eye conditions ranged from 97% for eye injury, to 8% for diabetic eye disease. While 509 (85%) people reported knowledge of cataract, 47% did not know how cataract was treated and only 19% listed surgery. The older group (66.5%) were least informed about cataract (p= 0.001) compared to other groups, and were least likely to believe that some blindness could be prevented (p < 0.001). Women (55%) were more likely than men (46%) (p=0 .003) to report that a child with blindness could attend school, as did people without a disability compared to those with a disability (58% vs 34%) (p < 0.001).

Conclusions: The knowledge about cataract and refractive error and what to do to resolve the problems was low among this population and this study suggests that poor knowledge of eye diseases might contribute to the occurrence of un-operated cataract and uncorrected refractive error.

Use of eye care services by people with diabetes: the Melbourne Visual Impairment Project

AIM: The use of eye care services by people with and without diabetes was investigated in the Melbourne Visual Impairment Project (VIP), a population based study of eye disease in a representative sample of Melbourne residents 40 years of age and older. METHODS: A comprehensive interview was employed to elicit information on history of diabetes, medication use, most recent visit to an ophthalmologist and optometrist, and basic demographic details. Presence and extent of diabetic retinopathy was determined by dilated fundus examination. RESULTS: The Melbourne VIP comprised 3271 people who ranged in age from 40 to 98 years; 46.2% of them were male. Of 3189 people who had the fundus examination and knew their diabetes status, 162 (5.1%) reported having been previously diagnosed with diabetes and, of these, 37 (22.2%) were found to have diabetic retinopathy. Seven people (4.3%) had developed diabetes before age 30. The mean duration of diabetes was 9.2 years. People with diabetes were significantly more likely to have visited an ophthalmologist ever or in the past 2 years than people without diabetes. However, 31.8% of people with diabetes had never visited an ophthalmologist. The proportion of people who had never seen an ophthalmologist was 47.1% for people without diabetes, 34.2% for people with diabetes but without diabetic retinopathy, and 25% for people with diabetic retinopathy. Sixty one per cent of people with diabetic retinopathy had seen an ophthalmologist in the past year and a further 3% within the past 2 years. People with diabetes were not significantly more likely to have visited an optometrist than people without diabetes (p = 0.51). Overall, 37.7% of people with diabetes and 32.9% of people without diabetes had visited an optometrist within the past year (chi 2 = 2.25, 1 df, p = 0.13). Information concerning retinal examinations was available for 135 individuals (83.3% of people with diabetes). Only 74 (54.8%) could recall ever having a dilated fundus examination; 10 (14%) by an optometrist, 62 (86%) by an ophthalmologist, and five (7%) by a general practitioner. Of those 68 people who had seen an ophthalmologist in the past 2 years, 48 (71%) reported a dilated fundus examination during that time. This compares with 28 (43%) reported dilated fundus examinations in the 65 people who had seen an optometrist in the past 2 years. This finding is statistically significant (chi 2 = 10.2, 1 df, p < 0.005). CONCLUSION: These results indicate that nearly half of people with diabetes in Melbourne are not receiving adequate screening or follow up for diabetic retinopathy, despite universal health care.

Considering Aboriginal palliative care models: the challenges for mainstream services

This review discusses palliative care and end-of-life models of care for Aboriginal people in the Australian state New South Wales, and considers Aboriginal palliative care needs by reflecting on recent literature and lessons derived from Aboriginal consultation. Aboriginal people in Australia account for a very small proportion of the population, have poorer health outcomes and their culture demonstrates a clear resistance to accessing mainstream health services which are viewed as powerful, isolating and not relevant to their culture, way of life, family and belief systems. Aboriginal people regard their land as spiritual and their culture dictates that an Aboriginal person needs to know their origins, emphasising the value placed on kin and also demonstrating a strong desire to remain within their own country. Currently Aboriginal people tend to not access palliative care services in mainstream facilities; and there is very little data on Aboriginal admissions to palliative care centres. Over the last two decades only two models of palliative care focusing on and developed in Aboriginal communities have been implemented. The seminal contribution to Aboriginal Palliative Care was in the form of a resource kit developed to support palliative care providers to examine their practice for cultural appropriateness for Aboriginal and Torres Strait Islanders. The "living model" coming from this project is adaptive and flexible, enabling implementation in different Aboriginal country as a participative process with community input. The Australian government"s National Indigenous Palliative Care Needs Study similarly indicated that Australian empirical research on Aboriginal palliative care service provision is in its infancy, and comprehensive data on the rates of Aboriginal access to palliative care services did not exist. What literature does exist is drawn together in an argument for the development and need for culturally specific Aboriginal palliative care models, which are culturally appropriate, locally accessible and delivered in collaboration and partnership with Aboriginal controlled health services. This is essential because Aboriginal people are a minority cultural group who are disconnected from mainstream health service delivery, and have a sense of cultural isolation when accessing mainstream services. It is preferable that palliative care is delivered in a collaboration between Aboriginal Controlled Health Service and mainstream palliative care services to ensure a dignified end of life for the Aboriginal person. These collaborations and partnerships are fundamental to ensure that a critical mass of Aboriginal clinicians are trained and experienced in end of life care and palliation. Developing palliative care programs within Aboriginal communities and training Aboriginal Health Workers, promoted and developed in partnership with the Aboriginal community, are important strategies to enhance palliative care service provision. Further partnerships should be championed in this collaborative process, acknowledging a need for palliative care models that fit with Aboriginal peoples" community values, beliefs, cultural/ spiritual rituals, heritage and place.

Aboriginal palliative care and mainstream services

The Aboriginal person's strong wish to die at home with family, surrounded by their 'country' and in their own community means effective palliative care services must be Aboriginal centred and focused.

An `upside-down` view of rural health care

Access to high quality health care services plays an important part in the health of rural communities and individuals. This fact is reflected in efforts by governments to improve the quality of such services through better targeting of funds and more efficient management of services. In Australia, the difficulties experienced by rural communities in attracting and retaining doctors has long been recognized as a contributing factor to the relatively higher levels of morbidity and mortality in rural areas. However, this paper, based on a study of two small rural communities in Australia, suggests that resolving the health problems of rural communities will require more than simply increasing the quality and accessibility of health services. Health and well-being in such communities relates as much to the sense of community cohesion as it does to the direct provision of medical services. Over recent years, that cohesion has diminished, undermined in part by government policies that have fuelled an exodus from small rural communities to urban areas. Until governments begin to take an 'upside-down' perspective, focusing on building healthy communities rather than simply on building hospitals to make communities healthy, the disadvantages faced by rural people will continue to be exacerbated.

Straddling the pathway from paediatrician to mainstream health care : transition issues experienced in disability care

Objective: To identify the strengths and limitations of health care and related services provided to young adults with a disability during the period of transition from the care of a paediatrician to the mainstream health system.
Design: A descriptive design was used to address the study objectives.
Setting: Barwon and south-western region of Victoria.
Subjects: Twelve focus group discussions, with young adults with a disability, carers of young adults with a disability and health care service providers. Each focus group involved eight to 10 participants.
Results: The findings revealed a number of problems with the transition period. All participants acknowledged the supportive, coordinating role of the paediatrician. In the absence of this type of role, carers felt they lacked the knowledge and support to manage the adolescent with a disability. Communication problems between all service providers were identified as being problematical. The general lack of continuity of care between providers made it difficult for individuals to negotiate the transition period and increased the burden of care on carers.
Conclusion: There is a need for policy makers to address these transition problems and develop appropriate services that improve the situation for young adults with a disability and their carers.
What is already known: It is well documented that the transition period from paediatrician to adult health care services is problematic for the young adult with a disability and their carer. The difficulties experienced are attributed to poor communication between service providers and a lack of continuity of care.
What does this study add: This study provides insights from a number of different consumer and health care professionals' perspectives. The findings identify service delivery gaps and a need to develop health care services that could assist the young adult with the disability negotiate this transition from the paediatric services to mainstream health care services in rural and regional settings in Victoria.

Addressing training needs for community care assessment in remote Indigenous communities

Access to Home and Community Care services in Australia is based on the assessed needs of individual clients, with individual Home and Community Care organisations generally being responsible for initial assessment of eligibility and need. Home and Community Care funded services are expected to operate within the agency's program guidelines and to adhere to minimum service standards. However, service delivery contexts in remote areas of Australia present particular challenges for staff in the practice of assessment and care planning. This paper discusses the findings of a project which investigated approaches to assessment of client needs in remote Home and Community Care services. Some of the challenges of providing care in remote/Indigenous contexts are discussed. The research project highlighted that there was an inadequate knowledge base to assist staff with assessment and care planning in these cross-cultural contexts; a greater focus on developing the assessment skills of staff was needed. Subsequently, an education program incorporating the International Classification of Functioning, Disability and Health was developed for Home and Community Care assessment staff in remote communities. Rather than focusing on process skills and procedures, the program was designed to equip staff with a solid and consistent conceptual framework to assist with assessment and care planning.

Continuity of care and general wellbeing of patients with comorbidities requiring joint replacement

Aim. The aim of this paper is to examine the continuity of care and general wellbeing of patients with comorbidities undergoing elective total hip or knee joint replacement.
Background. Advances in medical science and improved lifestyles have reduced mortality rates in most Western countries. As a result, there is an ageing population with a concomitant growth in the number of people who are living with multiple chronic illnesses, commonly referred to as comorbidities. These patients often require acute care services, creating a blend of acute and chronic illness needs. For example, joint replacement surgery is frequently performed to improve impaired mobility associated with osteoarthritis.
Method. A purposive sample of twenty participants with multiple comorbidities who required joint replacement surgery was recruited to obtain survey, interview and medical record audit data. Data were collected during 2004 and 2005.
Findings. Comorbidity care was poorly co-ordinated prior to having surgery, during the acute care stay and following surgery and primarily entailed prescribed medicines. The main focus in acute care was patient throughput following joint replacement surgery according to a prescribed clinical pathway. General wellbeing was less than optimal: participants reported pain, fatigue, insomnia and alterations in urinary elimination as the chief sources of discomfort during the course of the study.
Conclusion. Continuity of care of comorbidities was lacking. Comorbidities affected patient general wellbeing and delayed recovery from surgery. Acute care, clinical pathways and the specialisation of medicine and nursing subordinated the general problem of patients with comorbidities. Systems designed to integrate and co-ordinate chronic illness care had limited application in the acute care setting. A multidisciplinary, holistic approach is required. Recommendations for further research conclude this paper.