Experience of health care at a reference centre as reported by patients and parents of children with rare conditions.

BACKGROUND: Whilst diagnostic pathways for children with rare conditions have shown marked improvement, concerns remain about the care children with rare conditions receive at the level of the health care provider. There is, therefore, a need to improve our understanding of the health care received and explore the development of benchmarks that can be regularly monitored. METHODS: Patients and parents with rare conditions at a tertiary children's hospital were approached to complete a questionnaire-based survey that enquired on their experience of clinical care. The survey explored six key themes: diagnosis; provision of information; availability of support; satisfaction with healthcare team; awareness and support for life-limiting conditions; and participation in research. RESULTS: 130 questionnaires were completed on behalf of 134 patients between 2018 and 2020. Of these, 114 (85%) had received a formal diagnosis, 5 (4%) had a suspected diagnosis and 15 (11%) were undiagnosed. Of the 114 who had received a diagnosis, 24 (20%) were diagnosed within 6 months of developing symptoms, and 22 (20%) within 1-3 years. Seventy patients (53%) reported that they were given little or no information around the time of diagnosis, whilst 81 (63%) felt they were currently well supported, mostly from family members, followed by friends, hospital services, school, other community based healthcare services and lastly, primary care. Of the 127 who were asked, 88 (69%) reported a consistent team of healthcare professionals taking overall responsibility for their care, 86 (67%) felt part of the team, 74 (58%) were satisfied with the level of knowledge of the professionals, and 86 (68%) knew who to contact regarding their condition. Of the 91 who were asked, 23 (25%) were aware their child had a life limiting condition, but only 4 (17%) were receiving specialist support for this. Of 17 who were asked about research, 4 (24%) were actively participating in research, whilst the remainder were all willing to participate in future research. CONCLUSIONS: The survey provides a unique insight into the experience of patients and parents within a specialist centre and the benchmarks that it has revealed can be used for future improvement in services.

Ethical and Methodological Considerations for Evaluating Participant Views on Alzheimer's and Dementia Research.

The urgent need to expand enrollment in Alzheimer's disease and related dementia (ADRD) research has synergized calls for an empiric science of research recruitment, yet, progress in this area is hindered by challenges to measuring views toward ADRD research. This paper reports ethical and methodological considerations identified through a prospective qualitative study investigating ADRD patient and caregiver views on research recruitment and participation surrounding acute illness. Ethical and methodological considerations were identified through a combination of memoing, collaboration with a Community Advisory Board (CAB), and analysis of interview data from ADRD patients (N = 3) and/or caregivers (N = 28). These included risk for undue influence attributable to role ambiguity/motivational misconceptions, divergent decision-making preferences, bias contributing to low referrals of ADRD participants, and difficulty answering abstract/hypothetical questions. Many considerations were successfully addressed with multifaceted, proactive strategies, and CAB input. Findings have implications for recruitment science research and the validity of inferences regarding research preferences.

Tailoring Research Recruitment for Acute Care Settings: Recommendations from People with Dementia and their Caregivers.

BACKGROUND: There is a pressing need to increase enrollment and representation in Alzheimer's disease and related dementia (ADRD) research. Current recruitment approaches focus largely on clinic and community settings, with minimal engagement of acute care environments despite their broad use across diverse populations. The objectives of this study were to examine views, preferences, and recommendations regarding acute care-based ADRD research recruitment among persons with dementia and their caregivers. METHODS: The authors conducted semistructured interviews with recently hospitalized persons with dementia (N=3) and family caregivers (N=28). Interviews were analyzed using thematic analysis. FINDINGS: All participants endorsed acute care as an appropriate time for recruitment into ADRD research studies and identified important elements of an appropriately tailored recruitment approach and an interpersonally effective research staff. Participants emphasized that this approach should consider the acute care context with respect to participant situation, uncertainty, and timing. Participant suggestions informed the design of a 5-step process to guide ADRD research recruitment in the context of acute care. DISCUSSION: Findings provide valuable insights from people with dementia and their caregivers regarding opportunities for research engagement surrounding acute care and can inform expanded recruitment in these settings.

Exploring dementia family caregivers' everyday use and appraisal of technological supports.

Family caregivers provide the majority of care for people with dementia, often balancing multiple caregiving roles. Technology-based interventions have demonstrated strong potential for supporting family caregivers in navigating these roles, yet translational uptake of these interventions remains limited. A comprehensive understanding of how caregivers engage and evaluate everyday technological supports is necessary to foster broader adoption. Through semi-structured interviews with 20 caregivers, the present study aimed to explore caregivers' everyday use and appraisal of technological supports. We found that caregivers use specific technological supports to meet specific caregiving needs (e.g. coordination, information seeking, direct care), and exhibit unique technology use patterns (e.g. trial-and-error) shaped by the caregiving need. Caregivers shared positive appraisals of technological supports for caregiving, citing the role of perceived utility, existing familiarity, and social resources in their acceptance and uptake. These findings illustrate important perspectives regarding everyday technology with immediate relevance for intervention design and functionality.

Nomenclature Used by Family Caregivers to Describe and Characterize Neuropsychiatric Symptoms.

BACKGROUND AND OBJECTIVES: Neuropsychiatric symptoms (NPS) are a core feature of Alzheimer's disease and related dementias that are characterized by a fluctuating course. NPS are challenging to manage and contribute to high rates of burden among family caregivers. Successful information exchange between clinicians and family caregivers is critical for facilitating effective management of NPS. However, this communication is often challenging due to inconsistent terminology and classification of symptoms and limited understanding of how family caregivers recognize and describe symptoms. The objective of this study was to examine the language family caregivers' use to describe and contextualize NPS. RESEARCH DESIGN AND METHODS: Descriptive qualitative study of 20 family caregivers in a mostly urban county in the Midwestern United States using semistructured interviews. Caregiver descriptions of NPS were analyzed using directed content and text analysis to examine terminology, followed by a thematic analysis approach to examine contextualization of NPS. RESULTS: Caregivers employed shared terminologies to describe NPS that differed substantially from clinical terminology used to classify symptoms. Caregivers frequently engaged sense-making as a strategy to explain NPS. This sense-making served to contextualize patterns in behavior and was characterized by explanatory, situational, and strategy-oriented frameworks for understanding behavior in terms of its purpose and meaning. Caregivers' descriptions of NPS reflected broad overlap between individual NPS (i.e., agitation and care resistance) that would generally be considered clinically distinct symptoms. DISCUSSION AND IMPLICATIONS: Nomenclature surrounding NPS may vary considerably between family caregivers and clinicians, and should be evaluated in partnership with people with dementia and their caregivers to ensure supportive interventions and resources are responsive to caregivers' interpretation of symptoms and sense-making.