Squaring the circle: a priority-setting method for evidence-based service development, reconciling research with multiple stakeholder views.

BACKGROUND: This study demonstrates a technique to aid the implementation of research findings through an example of improving services and self-management in longer-term depression. In common with other long-term conditions, policy in this field requires innovation to be undertaken in the context of a whole system of care, be cost-effective, evidence-based and to comply with national clinical guidelines. At the same time, successful service development must be acceptable to clinicians and service users and choices must be made within limited resources. This paper describes a novel way of resolving these competing requirements by reconciling different sources and types of evidence and systematically engaging multiple stakeholder views. METHODS: The study combined results from mathematical modelling of the care pathway, research evidence on effective interventions and findings from qualitative research with service users in a series of workshops to define, refine and select candidate service improvements. A final consensus-generating workshop used structured discussion and anonymised electronic voting. This was followed by an email survey to all stakeholders, to achieve a pre-defined criterion of consensus for six suggestions for implementation. RESULTS: An initial list of over 20 ideas was grouped into four main areas. At the final workshop, each idea was presented in person, visually and in writing to 40 people, who assigned themselves to one or more of five stakeholder groups: i) service users and carers, ii) clinicians, iii) managers, iv) commissioners and v) researchers. Many belonged to more than one group. After two rounds of voting, consensus was reached on seven ideas and one runner up. The survey then confirmed the top six ideas to be tested in practice. CONCLUSIONS: The method recruited and retained people with diverse experience and views within a health community and took account of a full range of evidence. It enabled a diverse group of stakeholders to travel together in a direction that converged with the messages coming out of the research and successfully yielded priorities for service improvement that met competing requirements

MENSTRUAL MANAGEMENT: THE MOTHER'S PERSPECTIVE

It is suggested in the service provision literature for people who have a learning disability (LD) that menstrual management should be addressed proactively on the basis of least restrictive approaches. In this study, detailed information about menstrual management decision‐making on behalf of 30 young women with LD and high support needs was obtained through interviews with their mothers. Analysis of the interview data suggests that although menstrual suppression or elimination was often preferred, parental decision‐making appeared to be occurring without access to practical support or comprehensive information. Some parental perspectives are identified and briefly discussed. It is concluded that service provision organisations need to make available information and practical support to young women, their families, and staff members, in the areas of menstrual and fertility management. 1994 Blackwell Publishing Lt

The legal trends—implications for menstruation/ fertility management for young women who have an intellectual disability

Since 1988, there have been a number of Family Court of Australia cases where permission was sought for a hysterectomy (surgical removal of the uterus) to be performed on premenarchal women who have an intellectual disability. The case judgments refer to several cases from appellate overseas courts. While the judgments indicate a division of judicial opinion on the issue of the necessity of court consent for such surgery on this group of young women, all of the judges sanctioned a premenarchal hysterectomy. This paper will review the cases with specific reference to relevant Australian legislation, and the implications for women who have an intellectual disability which may have international applicability

MENSTRUAL MANAGEMENT AND WOMEN WHO HAVE INTELLECTUAL DISABILITIES: SERVICE PROVIDERS AND DECISION-MAKING

As part of a study about menstrual management decision-making for women who have an intellectual disability and high support needs, 63 service providers were interviewed using a semi-structured interview schedule. The interview participants included school staff, residential staff, "resource" staff, managers, and medical practitioners. The interview schedule sought information about decision-making bases, such as relevant personal experiences and observations, attitudes to menstruation, knowledge of management approaches, and practical support networks accessed by the participants. In addition, participants were asked their opinions about decision-making processes such as what choices they perceive as practicable and preferable, who should be involved in decision-making processes and criteria upon which decisions should be made. Participants were also asked for their suggestions about how to access information and enhance practical support for the young women and their ramifies. This paper summarises the information gained through these semi-structured interviews and suggests that service provision organisations may need to review staff training and service delivery in relation to menstrual management. Some suggestions for staff training are made

Sterilisation, drugs which suppress sexual drive, and young men who have intellectual disability

In 1992, the High Court of Australia ruled that all procedures involving the sterilisation of children (other than to treat some malfunction or disease) should be referred to the Family Court of Australia. There has been recent public debate about the sterilisation of young women who have intellectual disability. However , there appears to be very little known about the sterilisation of young men who have intellectual disability. Health Insurance Commission figures indicate that vasectomies and perhaps bilateral orchidectomies are occurring for some young Australian males under 19 years of age, some of whom are under nine years of age. In addition, the use of drugs to alter sexual behaviour in young men with intellectual disability remains controversial. Concerns include sexual behaviour , aggression and other aspects of human relationships of young men with intellectual disabilities. This paper reports on 51 responses to a request for information about sterilisation, drugs and young men who have intellectual disability in Australia. Several issues, including the influence of attitudes and the need for informed decision making are raised

Spinal cord injury and family caregivers: A description of care and perception of service need

As survival ratesand life expectancies ofindividuals experiencing acquired disabilities such as spinal cord injury improve, greater demands are placed on health, rehabilitation and longterm care services. Further,family caregivers are assuming much ofthe caring responsibilities. Thispaper examinesfamily caregiuing in relation to individuals with spinal cord injury (SCI) in an Australian context. The paper is based on a descriptive survey conducted with 206 individuals with SCI, referred to a specialist SCI outreach service in Queensland, and 179 family caregivers. The survey collected social and demographic information and details oftbe type ofcare provided byfamily caregivers. It also exploredfamily caregivers' perceptions ofthe types ofservices they require to assist them in tbeir caring roles. Family caregiuing typically involvedphysical, practical, and emotional support, and in many cases this occupied in excess of three hours a day, with no additional source of caregiVing provided. The most frequently reported service types required by family caregivers included respite, personal support, information services, and bealtb professional services. Mapping caregiver needs in this area establishes a critical basisfor service planning and more importantly prouides a guide for the development ofa range ofservicesdedicated to maintaining the health and well-being offamily caregivers ofindividuals with SC

Menstrual management and intellectual disability: new perspectives

Assessment and education in self‐care, ‘activities of daily living’ (ADL) have provided a traditional focus among occupational therapists. Available literature supports the teaching of self‐care skills to clients who have severe and profound intellectual disability. Although some programmes have been developed to deal with menstrual management for women with mild and moderate intellectual disability, studies addressing the needs of women with more severe disabilities (high support needs) are sparse, and generally involve only small numbers of women. A menstrual management project based at the University of Queensland developed a model of intervention to assist with menstrual management for women with high support needs. Case studies illustrate three key areas of intervention: (1) assessment of the women's actual or potential menstrual management skills; (2) increasing awareness of attitudes towards menstruation for women who have intellectual disability, among people assisting them; and (3) provision of a range of information, processes and resources to assist educators, families and others providing personal assistance, with informed menstrual management for these women. Positive gains made by four women with high support needs are presented. Relevant issues and difficulties are discussed

Parents' experiences of the provision of community-based family support and therapy services utilizing the strengths approach and natural learning environments

Background In recent years, community based therapy service providers have explored different service delivery models to optimize child and family outcomes. This qualitative study aimed to explore parents' experiences of one particular service team that adopted a strengths approach, utilizing natural learning environments. Materials and methods Nine parents undertook in-depth, semi-structured interviews that were taped, transcribed, and examined using thematic content analysis. Rigour was ensured through peer and member checking, field journals and an audit trail. Results Several key themes emerged including; families' initial experiences of the service, their views of their child with a disability, their hopes for the future, and their experiences of receiving intervention from the team. Conclusions Parents were generally positive about the adoption of a strengths approach. 'Working together', 'being positive' and 'information exchange' were the main themes that parents' attributed to their positive experiences with the service

Perceptions of long-term community-based support following severe acquired brain injury

Many individuals require long-term community-based support following acquired brain injury (ABI). However, very few studies have examined individuals' perceptions of these support needs. The present exploratory study examined individuals' perceptions of community-based support following severe ABI. Participants included eight individuals (aged 20-48 years) with severe ABI, seven relatives and three case managers. The individuals were receiving long-term specialised lifestyle support ranging from 3-70 hours per week. A structured interview with open and closed questions was developed to explore perceptions of individuals' support needs across the areas of personal and home-based activities, community-based activities, self-organisation and vocational activities and social and psychological well-being. The questions investigated whether support was needed, the importance of support, the sources of support, the effectiveness of support and the need for change. A comparison of the three respondent groups' perceptions of support indicated a general consensus that community-based activities were the most important and most effective area of support. When the issues raised by the three respondent groups were compared and contrasted two main themes emerged from the data, which were labelled "relationships" and "individual choice versus support needs". These themes are discussed in relation to the provision of long-term community-based support services following ABI

Practical approaches to supporting young women with intellectual disabilities and high support needs with their menstruation

Menstrual myths may influence decisions about menstrual and fertility management for women with intellectual disabilities and high support needs. We identify six myths (related to menstruation, menstrual management, communication, sexual feelings, menstrual difficulties, and surgical elimination) and the evidence that dispels these myths. We provide reflexive questions for practitioners to help them critically reflect on their own approaches to menstrual management. We encourage those supporting women with disabilities to consider the reflective questions we have provided and to strive to support informed decision-making about menstruation and the related areas of fertility and sexual feelings