Kate Anderson

Patient Views About Treatment of Stage 5 CKD: A Qualitative Analysis of Semistructured Interviews

BACKGROUND How patients choose between alternative treatments for kidney failure is poorly understood. Recent studies of chronic kidney disease report that clinical outcomes, such as life expectancy, are rarely reflected in a patients decision for type of treatment compared with nonclinical outcomes, such as time on dialysis therapy, convenience, or impact on the family. METHODS A qualitative analysis using thematic synthesis of patient views about renal replacement therapy (RRT) was undertaken. As part of a national study of patients and renal health care providers, we interviewed 95 Australian dialysis and transplant patients to explore how they perceive these alternative treatments. RESULTS 52 patients were on satellite hemodialysis therapy, 8 patients were on incenter hemodialysis therapy, 8 patients were on continuous ambulatory peritoneal dialysis therapy, 5 patients were on automated peritoneal dialysis therapy, 4 patients were on home hemodialysis therapy, and 18 patients had a functioning transplant at the time of interview. Freedom, convenience, self-care, effectiveness, and simplicity were commonly cited positive characteristics, whereas confinement, risk, family burden, pain, and time commitment were negative characteristics associated with RRTs. Characteristics were not specific to dialysis modalities, and some (eg, self-care) were seen as both positive and negative. A limitation of the study was that only 17 of 77 (22%) dialysis patients interviewed were on a home-based therapy. CONCLUSIONS Patients preferred RRTs that enhanced their freedom and autonomy and were convenient, effective, and simple. Treatments that minimized confinement and risk also were viewed positively. Our analysis suggests that patients might choose between therapies based on their perception regarding which therapy most embodies particular characteristics that minimize impact on their lifestyle. Presentation of information regarding RRTs should focus on these characteristics and the potential impact of alternative treatments on the patients and how they wish to lead their lives.

Barriers to access by Indigenous Australians to kidney transplantation: the IMPAKT study.

SUMMARY:  Although Indigenous Australians represent less than 2% of the national population, they account for 8–10% of new patients commencing treatment for end‐stage renal disease (ESRD). Almost half come from remote regions lacking renal disease treatment services. In those regions, their incidence of ESRD is up to 30 times the incidence for all Australians.

Study Protocol – Improving Access to Kidney Transplants (IMPAKT): A detailed account of a qualitative study investigating barriers to transplant for Australian Indigenous people with end-stage kidney disease

BackgroundIndigenous Australians are slightly more than 2% of the total Australian population however, in recent years they have comprised between 6 and 10% of new patients beginning treatment for end-stage kidney disease (ESKD). Although transplant is considered the optimal form of treatment for many ESKD patients there is a pronounced disparity between the rates at which Indigenous ESKD patients receive transplants compared with their non-Indigenous counterparts. The IMPAKT (Improving Access to Kidney Transplants) Interview study investigated reasons for this disparity through a large scale, in-depth interview study involving patients, nephrologists and key decision-making staff at selected Australian transplant and dialysis sites.MethodsThe design and conduct of the study reflected the multi-disciplinary membership of the core IMPAKT team. Promoting a participatory ethos, IMPAKT established partnerships with a network of hospital transplant units and hospital dialysis treatment centres that provide treatment to the vast majority of Indigenous patients across Australia. Under their auspices, the IMPAKT team conducted in-depth interviews in 26 treatment/service centres located in metropolitan, regional and remote Australia. Peer interviewing supported the engagement of Indigenous patients (146), and nephrologists (19). In total IMPAKT spoke with Indigenous and non-Indigenous patients (241), key renal nursing and other (non-specialist) staff (95) and a small number of relevant others (28). Data analysis was supported by QSR software. At each site, IMPAKT also documented educational programs and resources, mapped an hypothetical ‘patient journey’ to transplant through the local system and observed patient care and treatment routines.DiscussionThe national scope, inter-disciplinary approach and use of qualitative methods in an investigation of a significant health inequality affecting Indigenous people is, we believe, an Australian first. An exceptionally large cohort of Indigenous participants provided evaluative comment on their health services in relation to dialysis and transplant. Additionally, the data includes extensive parallel commentary from a cohort of specialists, nurses and other staff. The study considers a ‘patient journey’ to transplant within a diverse range of Australian treatment centre/workplace settings. The IMPAKT Interview study protocol may contribute to improvements in multi-disciplinary, flexible design health services research with hard to reach or vulnerable populations in Australia and elsewhere.

“He Cares About Me and I Care About Him.” Children's Experiences of Friendship with Peers who use AAC

Typically developing children face multiple challenges in developing friendships with peers who have severe physical disabilities and use augmentative and alternative communication (AAC), especially when these peers experience restrictions in mobility, educational participation, physical access, and communication. In this small qualitative study, six typically developing children were interviewed about their friendships with classmates who have cerebral palsy and use AAC. Data were analyzed according to Riessmans narrative methodology (2008). Overall, participants viewed these friendships positively. In this article, we discuss the main themes that characterized these friendships: communication, learning, helping, and shared time. This knowledge may help to facilitate friendships between children without disabilities and their peers who use AAC within mainstream educational settings.

Australian parents' experiences of speech generating device (SGD) service delivery.

Abstract Objective: To explore parents’ perceptions of existing support for families with a new speech generating device (SGD). Method: Six Australian parents of school-aged children who used an SGD participated in semi-structured interviews about their experiences of SGD support. Data were explored and compared using narrative analysis. Results: Participants discussed barriers to service access, including long waiting lists, service exclusion policies and limited therapist expertise in SGD practice. They emphasized the value of ongoing service coordination for families. Finally, participants discussed the nature of role boundaries and responsibilities for parents vs. therapists in the intervention process and the impact that intervention approaches had on parent autonomy, empowerment and confidence. Conclusion: Having an SGD at home generates ongoing support needs, which had not been well met for some parents in our study. Results suggest that timely, well coordinated and family-centred support may enhance service experience for families with a new device.

Mentors experiences of using the Active Mentoring model to support older adults with intellectual disability to participate in community groups

Abstract Background Social inclusion is a widely acknowledged goal; who is best positioned to provide support and how support is delivered are key questions. Using Active Mentoring training, members of community groups mentored a person with intellectual disability and supported their inclusion in that group. Methods Interviews with 14 mentors explored their experiences of supporting a previously unknown person with intellectual disability to participate in their community group. Findings The core theme was No Different From Us. Mentors saw beyond the disability, they valued others, were community leaders, and had intrinsic qualities. With some basic orientation to the task, mentors were able to support the inclusion of their mentee in the group. Conclusion Community members are willing to support people with intellectual disability to join their community groups. The Active Mentoring training is one way of harnessing the goodwill of community groups and their members to include people with intellectual disability to participate on an individual basis in community groups.

Tele-AAC Resolution

Approximately 1.3% of all people, or about 4 million Americans, cannot rely on their natural speech to meet their daily communication needs. Telepractice offers a potentially cost-effective service delivery mechanism to provide clinical AAC services at a distance to the benefit of underserved populations in the United States and worldwide. Tele-AAC is a unique cross-disciplinary clinical service delivery model that requires expertise in both telepractice and augmentative and alternative communication (AAC) systems. The Tele-AAC Working Group of the 2012 ISAAC Research Symposium therefore drafted a resolution underscoring the importance of identifying and characterizing the unique opportunities and constraints of Tele-AAC in all aspects of service delivery. These include, but are not limited to: needs assessments; implementation planning; device/system procurement, set-up and training; quality assurance, client progress monitoring, and follow-up service delivery. Tele-AAC, like other telepractice applications, requires adherence to the ASHA Code of Ethics and other policy documents, and state, federal, and international laws, as well as a competent technological infrastructure. The Working Group recommends that institutions of higher education and professional organizations provide training in Tele-AAC service provision. In addition, research and development are needed to create validity measures across Tele-AAC practices (i.e., assessment, implementation, and consultation); determine the communication competence levels achieved by Tele-AAC users; discern stakeholders’ perceptions of Tele-AAC services (e.g., acceptability and viability); maximize Tele-AAC’s capacity to engage multiple team members in AAC assessment and ongoing service; identify the limitations and barriers of Tele-AAC provision; and develop potential solutions.

Engagement in retirement: an evaluation of the effect of Active Mentoring on engagement of older adults with intellectual disability in mainstream community groups.

BACKGROUND As adults with intellectual disability age, retirement options need to be explored. One option is to attend a mainstream community group for retirees. Support within these groups could come from group members who are trained to act as mentors for the older adults with intellectual disability. This research evaluated a support training programme, Active Mentoring, which combines elements of Active Support and Co-worker Training. METHOD Three older women with intellectual disability participated in a non-concurrent multiple baseline design. Effect size analyses (Percentage of Non-overlapping Data) were used to evaluate observational data. RESULTS Active Mentoring was effective in increasing most types of engagement in activities, but there was no observed effect for social engagement. Mentor help also increased. CONCLUSION Active Mentoring was effective in eliciting support from mentors, and in increasing activity engagement of older adults with intellectual disability in mainstream community groups.

The Storybook Method: Research Feedback with Young Participants

Children are valuable informants for social research; however, their participation presents additional ethical and practical challenges. Of these challenges, feedback to verify the researchers’ interpretations drawn from children’s data, and the dissemination of project findings to young participants, have proven difficult to overcome. In this paper, we outline the Storybook method, an approach to feedback in research with young children. In the example study, illustrations, interactive pop-ups, and third-person disclosure were used to aid children aged 7–9 years to overcome the power imbalance in interviews with adults. The Storybook method facilitated active participation in the validation process. Potential modifications of the method for use with older populations, including adults with intellectual disabilities, complex communication needs, and those requiring alternate access to written texts, are also explored.

Alternative service delivery models for families with a new speech generating device: perspectives of parents and therapists

Abstract Purpose: Research has revealed limitations in the provision of in-person services to families with a new speech generating device (SGD), both in Australia and overseas. Alternative service models such as parent training, peer support and telepractice may offer a solution, but their use with this population has not been researched to date. Method: Using interviews and focus groups, this study explored the experiences and opinions of 13 speech-language pathologists and seven parents regarding alternatives to in-person support and training for families with a new SGD. Data were analysed using grounded theory. Themes explored in this paper include the benefits and drawbacks of alternative service models as well as participants’ suggestions for the optimal implementation of these approaches. Result: Participants confirmed the utility of alternative service models, particularly for rural/remote and underserviced clients. Benefits of these models included reduced travel time for families and therapists, as well as enhanced information access, support and advocacy for parents. Conclusion: Participants viewed the provision of ongoing professional support to families as critical, regardless of service modality. Additional issues arising from this study include the need for development of organizational policies, resources and training infrastructure to support the implementation of these alternative service models.