Challenges of using a Fitbit smart wearable among people with dementia.

OBJECTIVES: Limited research on using smart wearables such as Fitbit devices among people with dementia has shown favourable outcomes. The aim of this study was to explore the acceptability and feasibility of using a Fitbit Charge 3 among people with dementia, living in the community, who took part in the physical exercise component of the Comprehensive REsilience-building psychoSocial intervenTion pilot study. METHODS: A mixed methods study was conducted; Quantitative data relating to wear rates for the Fitbit were recorded and qualitative data were collected by group and individual interviews with the people with dementia and their caregiver about their experience of wearing/using the Fitbit in the study. RESULTS: Nine people with dementia and their caregiver completed the intervention. Only one participant wore the Fitbit consistently. Supporting set-up and use of the devices was time consuming and caregiver involvement was essential for day-to-day support: none of the people with dementia owned a smartphone. Few of them engaged with the Fitbit features, primarily only using it to check the time and only a minority wanted to keep the device beyond the intervention. DISCUSSION: When designing a study using smart wearables such as a Fitbit among people with dementia, consideration should be given to the following: the possible burden on caregivers supporting the use of the device; a lack of familiarity with this technology in the target population; dealing with missing data, and the involvement of the researcher in setting up and supporting use of the device.

Exploring Parental Responses to Pre-schoolers' "Everyday" Pain Experiences Through Electronic Diary and Ecological Momentary Assessment Methodologies.

Objective: Parental influence during children's "everyday" pain events is under-explored, compared to clinical or experimental pains. We trialed two digital reporting methods for parents to record the real-world context surrounding their child's everyday pain events within the family home. Methods: Parents (N = 21) completed a structured e-diary for 14 days, reporting on one pain event experienced by their child (aged 2.5-6 years) each day, and describing child pain responses, parental supervision, parental estimates of pain severity and intensity, and parental catastrophizing, distress, and behavioral responses. During the same 2-week period, a subsample of parent-child pairs (N = 9) completed digital ecological momentary assessments (EMA), immediately after any chosen pain event. Children reported their current pain while parents estimated the child's pain and indicated their own distress. Results: "Everyday" pain events frequently featured minor injuries to the child's head, hands or knees, and child responses included crying and non-verbal comments (e.g., "Ouch!"). Pain events occurred less frequently when parents had been supervising their child, and supervising parents reported lower levels of worry and anxiety than non-supervising parents. Child sex was significantly associated with parental estimates of pain intensity, with parents of girls giving higher estimates than parents of boys. Child age was significantly associated with both the number of pain events and with parental estimates of pain intensity and child distress: the youngest children (2-3 years) experienced the fewest pain events but received higher pain and distress estimates from parents than older children. Hierarchal Linear Modeling revealed that parental estimates of pain severity were significant positive predictors of parental distress and catastrophizing in response to a specific pain event. Furthermore, higher levels of parental catastrophic thinking in response to a specific pain event resulted in increased distress, solicitousness, and coping-promoting behaviors in parents. The EMA data revealed that children reported significantly higher pain intensity than their parents. Conclusion: The electronic pain diary provided a key insight into the nature of "everyday" pain experiences around the family home. Digital daily reporting of how the family copes with "everyday" events represents a viable means to explore a child's everyday pains without disrupting their home environment.

Rare Disease Research Partnership (RAinDRoP): a collaborative approach to identify research priorities for rare diseases in Ireland.

Background: The Rare Disease Research Partnership (RAinDRoP) was established in 2018 to bring together a wide variety of diverse voices in the rare disease community in Ireland and form a research partnership. This approach enabled clinicians, patients, carers and researchers to work together to identify top research priorities for rare diseases, which focused on a life-course perspective rather than a disease-specific need.                                                                                                           Methods: A participatory multiple phase approach was used to identify research priorities for rare diseases. The research process involved three main phases: Phase I, Public Consultation Survey on Research in Rare Diseases in Ireland (PCSRRDI); Phase II, Research Prioritisation Workshop (RPW); Phase III, Follow-up Public Consultation and Prioritisation Survey (FWPCPS). Results: In total, 240 individuals completed the phase I PCSRRDI, which comprised of a cross-section of health care professionals, researchers and people living with rare diseases. One thousand and fifteen statements were collected, reflecting issues and shared challenges in rare diseases. A shortlisting step by step was used to identify any statements that had received a total score of above 50% into 10-12 researchable questions or statements per the theme for the phase II workshop. Phase II was focused on three main themes: (1) Route to Diagnosis, (2) Living with Rare Disease, (3) Integrated and Palliative Care. In total, 62 individuals attended the overall workshop; 42 participated in the prioritisation sessions. A cross-section of health care professionals, researchers and people living with rare diseases were engaged at each workshop. Seventy-five individuals completed the final phase III public ranking by priority responses, and they ranked the top 15 research priorities defined by the multi-stakeholders at the phase II consensus meeting. Conclusions: This study identified priorities for rare diseases research aimed at improving the health and wellbeing of people living with rare diseases.

Maternal presence or absence alters nociceptive responding and cortical anandamide levels in juvenile female rats.

The influence of parental support on child pain experiences is well recognised. Accordingly, animal studies have revealed both short- and long-term effects of early life stress on nociceptive responding and neural substrates such as endocannabinoids. The endocannabinoid system plays an important role in mediating and modulating stress, social interaction, and nociception. This study examined the effects of maternal support or acute isolation on nociceptive responding of female rats to a range of stimuli during the juvenile pre-adolescent period and accompanying changes in the endocannabinoid system. The data revealed that juvenile female Sprague Dawley rats (PND21-24) isolated from the dam for 1 h prior to nociceptive testing exhibited increased latency to withdraw in the hot plate test and increased mechanical withdrawal threshold in the Von Frey test, compared to rats tested in the presence of the dam. Furthermore, isolated rats exhibited reduced latency to respond in the acetone drop test and enhanced nociceptive responding in the formalin test when compared to dam-paired counterparts. Anandamide, but not 2-AG, levels were reduced in the prefrontal cortex of dam-paired, but not isolated, juvenile rats following nociceptive testing. There was no change in the expression of CB1, FAAH or MAGL; however, CB2 receptor expression was reduced in both dam-paired and isolated rats following nociceptive testing. Taken together the data demonstrate that brief social isolation or the presence of the dam modulates nociceptive responding of juvenile rat pups in a modality specific manner, and suggest a possible role for the endocannabinoid system in the prefrontal cortex in sociobehavioural pain responses during early life.

The role of primary care in management of rare diseases in Ireland.

BACKGROUND: 'Slaintecare' aims to address complex patient care needs in an integrated fashion with an emphasis on patient-centred, patient-empowered community care.Currently there is a lack of knowledge of the impact of rare disease management in primary care and of the information tools required by general practitioners to deliver integrated care for rare disease patients. AIMS: To complete a pilot survey to estimate the general practice clinical workload attributable to selected rare diseases and assess the use of relevant information sources. METHODS: A retrospective cross-sectional survey was carried out of general practice consultations (2013-2017) for patients with 22 commonly recognised rare diseases. RESULTS: Around 31 general practitioners from 10 Irish practices completed information on 171 patients with rare diseases over 3707 consultations. General practice-specific coding systems were inadequate for rare disease patient identification. Over 139 (81.3%) patients were adult, and 32 (18.7%) were children. Management of care was hospital and not primary care based in 63%. Those eligible for state-reimbursed care had a significantly higher median number of consultations (23 consultations, IQR = 13-37, or 5.8 consultations/year) than those who paid privately (10 consultations, IQR = 4-19, or 2.5 consultations/year) (p < 0.005).General practitioners had access to public information resources on rare diseases but few had knowledge of (35.5%), or had ever used (12.9%) Orphanet, the international rare disease information portal. CONCLUSIONS: Both specific rare disease-specific coding and use of the relevant rare disease information sources are lacking in general practice in Ireland.

Am I being watched? The role of researcher presence on toddlers' behaviour during 'everyday' pain experiences: a pilot study.

Objective: Paediatric research on 'everyday' pain experiences is sparse, stemming from a lack of appropriate methodologies. We explored the feasibility of two methodologies for conducting naturalistic observations of 'everyday' pains within family's homes, against an established methodology for day-care observations. Design: Within family homes, video-cameras recorded a typical morning or afternoon (maximum three hours), either with, or without researcher presence. To compare feasibility, children in day-care were observed by researchers for three hours without video-recording. Outcome measures: logistics of observation, child pain behaviours, caregiver responses to child pain. Results: Thirteen children (Mage = 45.4 months) were recorded at home, experiencing 14 pain events. Researcher presence increased child distress intensity, but reduced the number of pain events compared to sessions without a researcher. Thirty-two children (Mage = 48.4 months) were observed in day-care, experiencing 44 pain events. Children experiencing pain events in day-care exhibited decreased distress and lower personal control than those observed at home. Across all conditions, caregivers engaged mostly in physical comfort. Researcher estimates of child pain were highest if scored while present in the home. Conclusions: Observing everyday pain events within the child's natural environment is feasible and may provide insight into the social context of childhood pain experiences.

Self-management needs of Irish adolescents with Juvenile Idiopathic Arthritis (JIA): how can a Canadian web-based programme meet these needs?

BACKGROUND: Juvenile Idiopathic Arthritis (JIA) affects over 1000 children and adolescents in Ireland, potentially impacting health-related quality-of-life. Accessible self-management strategies, including Internet-based interventions, can support adolescents in Ireland where specialist rheumatology care is geographically-centralised within the capital city. This study interviewed adolescents with JIA, their parents, and healthcare professionals to (i) explore the self-management needs of Irish adolescents; and (ii) evaluate the acceptability of an adapted version of a Canadian JIA self-management programme (Teens Taking Charge: Managing Arthritis Online, or TTC) for Irish users. METHODS: Focus groups and interviews were conducted with Irish adolescents with JIA (N = 16), their parents (N = 13), and Irish paediatric healthcare professionals (HCPs; N = 22). Adolescents were aged 12-18 (Mage = 14.19 years), and predominantly female (62.5%). Participants identified the needs of adolescents with JIA and evaluated the usefulness of the TTC programme. Data were analysed using a thematic analysis approach. RESULTS: Five themes emerged: independent self-management; acquiring skills and knowledge to manage JIA; unique challenges of JIA in Ireland; views on web-based interventions; and understanding through social support. Adolescents acknowledged the need for independent self-management and gradually took additional responsibilities to achieve this goal. However, they felt they lacked information to manage their condition independently. Parents and adolescents emphasised the need for social support and felt a peer-support scheme could provide additional benefit to adolescents if integrated within the TTC programme. All participants endorsed the TTC programme to gain knowledge about JIA and offered suggestions to make the programme relevant to Irish users. CONCLUSIONS: There is scope for providing easily-accessible, accurate information to Irish families with JIA. The acceptability of adapting an existing JIA self-management intervention for Irish users was confirmed.

Translating knowledge into practice: An exploratory study of dementia-specific training for community-based service providers.

Objective To develop, deliver, and evaluate dementia-specific training designed to inform service delivery by enhancing the knowledge of community-based service providers. Methods This exploratory qualitative study used an interdisciplinary, interuniversity team approach to develop and deliver dementia-specific training. Participants included management, care staff, and clients from three organizations funded to provide services in the community. Data on the acceptability, applicability, and perceived outcomes of the training were gathered through focus group discussions and individual interviews. Transcripts were analyzed to generate open codes which were clustered into themes and sub-themes addressing the content, delivery, and value of the training. Findings Staff valued up-to-date knowledge and "real stories" grounded in practice. Clients welcomed the strengths-based approach. Contractual obligations impact on the application of knowledge in practice. Implications The capacity to implement new knowledge may be limited by the legislative policies which frame service provision, to the detriment of service users.

Dementia: The need for attitudinal change.

OBJECTIVE: To undertake a systematic inquiry into the experience of living with dementia in the community. DESIGN: Action research, underpinned by critical hermeneutics, brought together action and reflection, theory and practice to generate knowledge. Data were gathered by interviews and observations in participants' homes, and focus group discussions in community settings. PARTICIPANTS: Eleven people with mild to moderate dementia and their primary caregiver aged 59-84, living in Auckland, New Zealand. RESULTS: The findings reveal a conflict between living positively with dementia, and enduring the negative attitudes that typify the dominant social discourse. The central argument arising from the findings is the significance of personal attitudes. CONCLUSIONS: Implications for policy makers, health care providers, and caregivers highlight the need to change the ways in which dementia is perceived. The pursuit of positive attitudes will do much to change social perceptions and enable people with dementia to live with a sense of well-being.

Ethical and effective: approaches to residential care for people with dementia.

New knowledge underpins calls for change in approaches to the care of people with dementia. Person-centred care is considered essential, whereas purpose-built facilities and environmental design are reported to enhance safety and to have a positive effect on behaviour. Research findings have highlighted the inappropriate use of antipsychotic drugs and there is debate about their value in 'managing' symptoms. This paper presents the combination of approaches used to enable residents of two secure dementia units to live life within their ability and without antipsychotic drugs. Essential to the success of the change process was staff education, knowledge of the person, a varied leisure activity programme and a supportive environment. Evidence of the positive difference these strategies made includes statistics that show a decline in falls and behavioural issues, and feedback from family members. In light of the evidence, this article posits that it is ethically wrong to give people with dementia antipsychotic medications because their behaviour is deemed to be unacceptable, when there are other viable options.

Translating action research into practice: seeking occupational justice for people with dementia.

Dementia is a critical social issue that contributes to, and is exacerbated by, occupational deprivation. This article reports the findings of an action research project undertaken to explore the daily activities of people who live with dementia in the community. Data were gathered by interviews, observations, and focus groups in community settings. The process of data gathering and analysis were reciprocally integrated. The participants, 11 people with mild to moderate dementia and their primary caregiver, prioritized the need to change the way dementia is perceived. Their rationale included other people's understanding of dementia and the social isolation they experience, resulting from a decline in opportunities to engage in daily activities. Occupational therapists have a significant role to play, encouraging and supporting people who live with dementia to maintain health and well-being by participating in occupations. Overcoming systemic issues that create barriers to occupation is vital. [OTJR: Occupation, Participation and Health 2013;33(3):168-176.].