Coordination and integration of disability services for the elderly: a viewpoint

The provision of disability services for the elderly in Australia is fragmented with areas of duplication arising chiefly from disorganized planning with the States and Territories providing certain services independent of Commonwealth contribution. It is suggested that the Commonwealth should be responsible for the complete provision of disability services for the elderly comprising community services and residential care. Private providers competing with each other for efficient provision of such services should be sought with financial incentives in funding arrangements encouraging healthy ageing thereby reducing expenditure in health care in the next decades.     

Home care in Australia: an integrative review

The home care sector comprises one of Australia’s fastest growing workforces, yet few papers capture the overall landscape of Australian home care. This integrative review investigates home care with the aim of better understanding care recipients and their needs, funding, and regulation; care worker skills, tasks, demographics, employment conditions, and training needs. Over 2,700 pieces of literature were analyzed to inform this review. Results suggest sector fragmentation and a home care workforce who, although well-placed to improve outcomes for care recipients, are in need of better training and employment support. Suggestions for future research regarding Australian home care include studies that combine both aged and disability aspects of care, more research around care recipients, priority needs and strategies for addressing them, and how best to prepare home care workers for their roles.     

More than just a health issue: a review of current issues in the care of enterally-fed children living in the community

There are increasing numbers of children with a disability living in the community who require enteral tube feeds to optimize their nutritional status. Whilst there appears to be evidence of health gains, for some children there may also be serious and unintended social deprivations resulting from the need to be tube fed. This paper reviews the literature on support for children who are tube fed and makes a case for more coordinated and effective support services for families who are tube feeding a child at home. It is argued that national guidance should be developed which clarifies the position of all non-parent carers and staff who are willing to administer enteral tube feeds. Such guidance should also ensure that enterally-fed children have the same rights to educational and social services as other children and that families are given the opportunity to make informed decisions about the implications of enteral feeding prior to it being established.     

Publicly funded home care service use in the first 2 years after spinal cord injury in Ontario,Canada

ABSTRACT

The objectives of this study were to describe home care utilization and costs in community-dwelling individuals 2 years post-spinal cord injury (SCI) in Ontario, Canada. This retrospective incident cohort study uses administrative health care data to identify individuals with traumatic SCI (tSCI). Time to service delivery and frequency of service delivery and costs were calculated. A total of 798 individuals with tSCI comprised the cohort. In the first 2 years, personal support/homemaking was the most utilized service. Median cumulative home care 2 years post-discharge was $7,200 ($1,240–35,410 25–75% interquartile range). This study highlights the importance of home care to individuals with SCI.     

Assessing patterns of home and community care service use and client profiles in Australia: a cluster analysis approach using linked data

The planning and delivery of care systems require knowledge on the ways in which individuals access available services that are funded by a range of health and community services. The aims of this study were to identify distinct groups of Home and Community Care (HACC) clients in New South Wales, Australia, based on patterns of actual service use, and to understand the health and social needs and resources of client groups that access different mixes of services. Multiple data sets linked at the individual level - including the 45 and Up Study community survey, the HACC Minimum Data Set and the Admitted Patient Data Collection for hospitals - provide an innovative basis to investigate the complexity of access to service use. Data were collected between 2006 and 2008. A cluster analysis based on clients' type and volume of community service use was conducted on the 4890 HACC clients in the linked dataset and nine distinct clusters of clients were identified. Three of these clusters were considered 'complex', in terms of the range of community and hospital assistance received, while the others comprised mainly of one or two dominant service types. The analytical approach and findings developed here provide a client-centred approach to monitor and evaluate access to local service systems that are being reformed to better integrate the delivery of health and community services currently funded and managed separately by national and state governments.     

Community participation and empowerment in primary health care in Emilia-Romagna: A document analysis study

Community participation and empowerment are seen as fundamental for achieving equitable, people-centred primary health care. Emilia-Romagna region introduced the Casa della Salute aiming to foster comprehensive primary health care and support community participation. Since the 1990s, community involvement has been promoted to improve the regional health system. The pivotal role of third sector organisations as service providers and advocates for users’ rights has been underlined. This contribution explores the evolution of the meaning and conceptualisation of community participation and empowerment in policies addressing the Casa della Salute. A qualitative document analysis study was undertaken. Three national and twelve regional documents dated between 2006 and 2019 were evaluated. The policies continuously address community participation. The Casa della Salute is seen as a designated place to promote participation and empowerment. The documents point to the need for democratic practice and shared decision-making power; third sector organisations are seen as salient community representatives and mediators. However, the policies show only a vague conceptualisation of how to empower communities; moreover, strategies to promote participation of vulnerable groups are lacking. Policies that consider the ambiguous role of the third sector, specify community empowerment, identify strategies to facilitate it and collaborate with vulnerable groups could be beneficial for further progress.     

Power to the people? Involving users and carers in needs assessments and care planning—views from the practitioner

Central to community care policy is the notion of user and carer involvement in the process of assessment and care management. Drawing on interviews with 65 practitioners from four social work departments in Scotland, the paper describes both the mechanisms they sought to employ to give users and carers greater control over the process, and the factors that inhibited the realization of this goal. The workers' accounts reveal a gap between an ‘ideal’ of user and carer empowerment, and the reality of day to day practice.     

Workplace stress,burnout and coping: a qualitative study of the experiences of Australian disability support workers

Disability support workers (DSWs) are the backbone of contemporary disability support services and the interface through which disability philosophies and policies are translated into practical action. DSWs often experience workplace stress and burnout, resulting in a high turnover rate of employees within the non‐professional disability service workforce. The full implementation of the National Disability Insurance Scheme in Australia is set to intensify the current challenges of attracting and retaining DSWs, as the role becomes characterised by greater demands, ambiguity and conflict. The aim of this study was to explore DSWs' perceptions of enjoyable and challenging aspects of disability support work, sources of stress and burnout and the strategies they use to cope when these issues arise. Twelve DSWs workers providing support for adults living with intellectual and physical disabilities were interviewed. Thematic analysis revealed a superordinate theme of ‘Balance’ comprising three sub‐themes: ‘Balancing Negatives and Positives’, ‘Periods of Imbalance’, and ‘Strategies to Reclaim Balance’. Participants spoke of the rewarding and uplifting times in their job such as watching a client learn new skills and being shown appreciation. These moments were contrasted by emotionally and physically draining aspects of their work, including challenging client behaviour, earning a low income, and having limited power to make decisions. Participants described periods of imbalance, wherein the negatives of their job outweighed the positives, resulting in stress and sometimes burnout. Participants often had to actively seek support and tended to rely on their own strategies to manage stress. Findings suggest that organisational support together with workplace interventions that support DSWs to perceive the positive aspects of their work, such as acceptance and mindfulness‐based approaches, may help to limit experiences of stress and burnout. The further development and evaluation of emotion‐focused workplace therapies, and interventions that consider organisational (macro) factors is suggested.     

Health care needs of cocaine users in Hungary: results of a qualitative study

INTRODUCTION: There have not been any substantive collection of data on cocaine users in Hungary although there were numerous indications that a cocaine problem may exist. AIM: In the frame of the project entitled "Support Needs for Cocaine and Crack Users in Europe" the aim of the authors was to identify the qualitative characteristics of Hungarian cocaine users. STUDY GROUP AND METHODS: In addition to a quantitative study of 210 cocaine users, we selected nine subjects by random sampling and conducted problem-oriented depth interviews with them. Three of the subjects belonged in the party group (weekend use, social integration), three in the scene group (part of the marginal drug-using subculture) and three in the therapy group (undergoing treatment for drug use at the time of the study). The main thread of the interview covered the following main aspects: 1. Drug-using behaviour--reduction, termination or continuation of use; 2. Use of support services; 3. Experiences with addiction medicine services; 4. Support needs. RESULTS: The interviews decide to give up cocaine use when they perceive the disproportionately high costs of cocaine use on the basis of simple cost-benefit calculation. Apart from the existential costs, the main costs include sleep disorder, psychological and psychiatric symptoms and problems (depression, sensitivity, paranoid state, panic, anxiety, sexual disorders, etc.), symptoms reminiscent of serious cardiac disorders (chest pain) and interpersonal problems. They were able to reach professional help by chance, through friends. Cocaine users do not favour state health services, they are mistrustful of the handling of data. For this reason they prefer private doctors. They seek medical help not for detoxification but rather to prevent a relapse, generally for problems arising after withdrawal. Psychological help dominates in the assistance given. Heroin-dependent cocaine users seek help from the staff in the place where methadone treatment is given. Much depends in the management of abstinence on the degree of involvement in the subculture, emotional support, the attitude to work, the extent of disorders arising after withdrawal, and the quality of the personal relationship formed with the doctor. Most cocaine users require complex multi-disciplinary treatment. CONCLUSION: Cocaine use can be characterised along the dimensions of work, self-image, conspiracy, openness, criminality, basic drug, the negative or positive reinforcing function of cocaine: Dr. Jekyll and Mr. Hyde type, Carmen type, Pinocchio type. The Dr. Jekyll and Mr. Hyde type is characterised by a double life, the Carmen type is the prototype of the sovereign female placing the emphasis on sexuality, the Pinocchio type is a trouble-making, criminal risk-seeker. While some of those within the Dr. Jekyll and Mr. Hyde type are open to help and others do not seek help, the Carmen type is open and the Pinocchio type closed to help unless their legal interests require the opposite.     

Challenges for Japanese rural home care workers in interprofessional collaboration: a qualitative study

Among medical professionals, the role of home care workers is crucial in the care of patients in their homes. In Japan, however, research on the difficulties home care workers face while working in rural zones is limited. Using thematic analysis, a qualitative study was conducted with 57 home care workers in a rural area of Japan. Findings revealed the difficulties they experienced regarding the medical problems of their patients and in their relationships with other professionals. The old customs of rural medicine and the system of long-term care insurance strongly influence relationships among multiprofessionals, leading to conflict and hierarchy.     

Experiences and perceptions of residential and home care services among older lesbian women and gay men in Australia

The needs of older lesbian and gay people regarding access and use of aged‐care services remain underresearched. This paper reports the findings of 33 qualitative interviews with older lesbian women and gay men about their perceptions and experiences of residential aged‐care and home‐based aged‐care services in Australia. The focus of this paper is their preparedness for using aged‐care services. The results highlight that participants had a number of concerns related to accessing residential‐care services in particular, including perceptions of a lack of inclusivity and concerns of potential for discrimination and hostility, loss of access to community and partners, decreased autonomy and concerns relating to quality of care and the potential for elder abuse. Participants noted a number of strategies they employed in avoiding residential‐care services, including the use of home‐care services, renovating the home for increased mobility, moving to locations with greater access to outside home‐care services, a preference for lesbian/gay‐specific housing and residential‐care options if available, and the option of voluntary euthanasia to ensure dignity and autonomy. Participants, on the whole, were hopeful that they would never require the use of residential‐care services, with some believing that having current good health or the support of friends could prevent this from happening. The findings suggest that older lesbian and gay people have a variety of concerns with aged‐care and may need additional support and education to improve their perceptions and experiences of services, whether these are needed presently or in the future.     

Patients' perceptions and experiences of transitions in diabetes care: a longitudinal qualitative study

Objective  To examine patients' perceptions and experiences over time of the devolvement of diabetes care/reviews from secondary to primary health-care settings.
Design  Repeat in-depth interviews with 20 patients over 4 years.
Participants and setting  Twenty type 2 diabetes patients recruited from primary- and secondary-care settings across Lothian, Scotland.
Results  Patients' views about their current diabetes care were informed by their previous service contact. The devolvement of diabetes care/reviews to general practice was presented as a 'mixed blessing'. Patients gained reassurance from their perception that receiving practice-based care/reviews signified that their diabetes was well-controlled. However, they also expressed resentment that, by achieving good control, they received what they saw as inferior care and/or less-frequent reviews to others with poorer control. While patients tended to regard GPs as having adequate expertise to conduct their practice-based reviews, they were more ambivalent about nurses taking on this role. Opportunities to receive holistic care in general practice were not always realized due to patients seeing health-care professionals for diabetes management to whom they would not normally present for other health issues.
Conclusions  It is important to educate patients about their care pathways, and to reassure them that frequency of reviews depends more on clinical need than location of care and that similar care guidelines are followed in hospital clinics and general practice. A patients' history of service contact may need to be taken into account in future studies of service satisfaction.