Understanding family carer experiences and perceptions of engagement in delirium prevention and care for adults in hospital: Qualitative systematic review.

AIM: To identify, describe and synthesise what is known about family carers' experiences and perspectives of engagement in delirium prevention and care for adults in hospital. DESIGN: Systematic review and synthesis of qualitative evidence. DATA SOURCES: Comprehensive literature search within PubMed, CINAHL, EMBASE, Scopus, Cochrane Central and PsycInfo databases to August 2022. Peer reviewed original qualitative research published in English. METHODS: Data were extracted using Covidence systematic review software. Methodological quality was reviewed against the Critical Appraisal Skills Program (CASP) Qualitative Checklist. Thematic synthesis was used to develop analytical themes. Confidence in the Evidence from Reviews of Qualitative Research (GRADE-CERQual) framework was applied to findings. RESULTS: Of 3429 records identified, 29 met criteria for final inclusion. Studies included a range of settings (intensive care, medical and surgical wards) and family carer types (spouse, daughter, parent and friend). Three primary themes Shared Caregiving, Partnership and Support, Communication for Shared Understanding and three cross-cutting contextual themes Care Transitions, Family Carer Context and Hospital Context were identified. Family carers have mixed experiences of involvement in delirium care and prevention. Family carer engagement in care impacted perceptions of care quality and their own self-efficacy. Where person-centred care expectations were not met, some family carers adopted compensatory or care contingency strategies. Information sharing and timely support from hospital staff who understood the carer context supported carer involvement. Supportive physical environments and addressing power imbalances allowed greater engagement. CONCLUSION: Family carers often wish to be involved in delirium prevention and care, but need to be recognised as individuals, listened to, informed and supported to optimise their contribution. IMPACT: The review findings can guide health professional and decision makers to optimise family carer involvement in delirium care programs. PROTOCOL REGISTRATION: PROSPERO [CRD42020221854]. REPORTING: ENTREQ. No Patient or Public Contribution.

Telehealth Cognitive Behavior Therapy to Reduce Anxiety in People Living with Cognitive Impairment: A Randomized Feasibility Pilot Study.

OBJECTIVES: To evaluate the feasibility of telehealth-based cognitive behavior therapy for people living with cognitive impairment experiencing anxiety (Tele-CBT), and to assess whether this leads to improvements in anxiety, depression, and quality of life post-intervention. METHODS: This was a single-blind randomized feasibility pilot trial of the Tele-CBT versus usual care. People living with mild cognitive impairment or dementia experiencing anxiety were recruited and randomized to receive Tele-CBT (n = 5) or continue usual care (n = 5). Feasibility data comprised recruitment uptake and retention, adherence, and ease of use. Outcomes of anxiety (primary outcome - Rating Anxiety in Dementia; RAID), depression, stress, and quality of life were measured pre- and post-intervention. RESULTS: Intervention feasibility was demonstrated through minimal attrition, acceptability, and ease of use via videoconferencing. Both groups showed a decrease of anxiety symptoms (RAID) from baseline to post-assessment. CONCLUSIONS: The Tele-CBT program was acceptable to use via videoconferencing. Reduced anxiety symptoms were observed in both groups at post-. An RCT with a larger sample is required to determine the efficacy and implementation of the intervention. CLINICAL IMPLICATIONS: This study indicates the feasibility of videoconference CBT to address anxiety experienced by people living with cognitive impairment with minimal assistance from support persons.

Considering occupational performance during recovery of distal radius fracture: A scoping review.

INTRODUCTION: Distal radius fracture (DRF) is one of the most common upper extremity fractures treated by hand therapists and can lead to chronic physical impairment and reduced occupational performance. This scoping review aimed to reveal what is currently known about occupational performance following DRF and to explore if and how occupational performance is defined and considered in the research. METHODS: This review was guided by the PRISMA-Scoping review and the Joanna Briggs Institute (JBI) guidelines. Relevant databases were searched, and studies that addressed occupation performance in adult participants following DRF were included. The findings were summarised according to the components of occupational performance (person, occupation, and environment), and quality was measured using the Mixed Methods Appraisal Tool. RESULTS: Forty-three articles met the eligibility criteria for inclusion. All of the studies discussed at least two components of occupational performance, while 25 recognised all three. The consideration of occupational performance was dominated by biomechanical issues associated with the person component (i.e. range of motion, strength). There was some acknowledgement of the psychosocial aspects of the person and, to a lesser extent, the environment, as well as the impact of both on return to occupational performance. CONCLUSION: Despite occupational performance being at the core of occupational therapy theory, its consideration within the context of research on DRF appears to be focussed on the person component of occupational performance and on biomechanical issues. Further research is recommended to determine how much this reflects current clinical practice and if a more comprehensive consideration of occupational performance will improve rates of recovery following DRF. CONSUMER AND COMMUNITY INVOLVEMENT: As part of the protocol development for this review, consumers and stakeholders were consulted. They provided feedback on clarity and importance of the research questions. PLAIN LANGUAGE SUMMARY: A distal radius fracture happens when you break the bone on the thumb side of your wrist. This type of injury often occurs when you fall and land on an outstretched hand. It is one of the more common injuries that hand therapists see in their practice. For some people, recovering from this fracture can take a long time and come with a lot of pain, difficulty moving, and emotional stress. These problems can make it hard to do everyday things like driving, cooking, or getting dressed. It can also affect both paid and unpaid work as well as leisure and social activities, making life more difficult for everyone involved. The findings from this review suggest that the current research usually focuses on how the body physically heals from this type of injury, but it does not pay as much attention to the emotional and social impact on healing. Also, it does not always discuss the activities that are important to the person, or the environment where they live, work, and socialise. This may show a gap in the research regarding our full comprehension of recovery from distal radius fractures. Taking a broader view and approach to recovery, considering a person's emotions, social life, environment, and daily activities, could help people recover fully and get back to their previous life routines and roles after this type of injury.

A qualitative study exploring the experiences and needs of people living with young onset dementia related to driving cessation: 'It's like you get your legs cut off'.

BACKGROUND: driving disruptions have significant impact on individuals living with dementia, their care partners and family members. Previous studies show that for older people with dementia, stopping driving is one of the hardest things that they cope with. To date, no studies exist that address the expressed needs and experiences of people living with young onset dementia (YOD) who are adjusting to life without driving, whose needs are not well understood and whose needs might be expected to differ from those of older people with dementia. METHODS: a multi-perspective, qualitative descriptive phenomenological approach was undertaken. A topic guide was developed in consultation with lived experience experts. In-depth interviews (n = 18) with 10 people with YOD and eight family caregivers were conducted, to elicit lived experiences in relation to changing and cessation of driving. Interviews were recorded and transcribed verbatim. Data were analysed using a hybrid approach, employing deductive and inductive coding. RESULTS: core findings reflected the impact and coping strategies employed by people with YOD and their care partners across four themes: (i) losses and burdens, (ii) the unique challenges of YOD, (iii) coping and adjustment and (iv) how to meet needs. CONCLUSIONS: driving disruptions often come at a time when people living with YOD are likely to have significant financial and family commitments, or they/their partners may be employed or raising a family, negatively impacting individual's roles and self-identities. Intervention to support emotional and practical adjustment and reduce social isolation is essential for coping.

Barriers and enablers to the delivery and implementation of the tailored activity programme in Australia: Perspectives of occupational therapists and their managers.

BACKGROUND: Prior to implementing new programmes or practices, it is essential to understand the context, barriers and enablers to support successful use. The tailored activity programme (TAP) is an evidence-based intervention provided by occupational therapists to support community-dwelling people living with dementia and their carers. The programme was developed in the United States, and although it is not currently available for routine use in Australia, its implementation would address the needs of many Australians with dementia and their carers. AIM: The aim of the study is to understand the perspectives of occupational therapists and their managers regarding barriers and enablers to the delivery and implementation of the TAP in Queensland, Australia. METHODS: A qualitative descriptive methodology was employed. Semistructured interviews were undertaken with occupational therapists (n = 18) who work with community-dwelling people with dementia and their carers, and their managers (n = 10). Participants were recruited from a range of organisations across Queensland, and they were asked about potential barriers and enablers to implementing TAP. Interviews were recorded and transcribed verbatim. Data were mapped using framework analysis whilst remaining open to other themes. FINDINGS: Themes were identified, and facilitating factors included the close alignment of TAP with occupational therapists' scope of practice; their acceptance of, and optimism about the programme and its perceived benefits including improved client outcomes; and an opportunity for occupational therapists to further develop their skills. Managerial support and carers' readiness and willingness to participate were also identified as important factors for success, whereas barriers were cost to clients and the capacity of the occupational therapy workforce to provide TAP. CONCLUSION: Occupational therapists and their managers expressed enthusiasm for TAP and awareness of its likely benefits, while also identifying barriers that will need to be addressed if implementation of the programme is to be successful in Australia.

Partnering with people living with dementia and care partners in technology research and design: Reflections and recommendations.

INTRODUCTION: Occupational therapists may recommend and support technology use for facilitating independence, safety, wellbeing, and participation. There are high expectations for technology for people living with dementia. However, there is recognition that technologies will need to improve to deliver these expected benefits. People living with dementia have historically been excluded from direct involvement in research and design. A program of participatory research was undertaken to codesign technologies and technology research with people living with dementia and care partners. This work aims to capture the requirements, actions, and barriers experienced in forming these partnerships in technology research and design. METHODS: A shared metareflection of experiences was conducted by members (5) of the research teams involved in three participatory research and technology design studies. The team comprising living experience experts, an occupational therapist, and interaction designer reflected on their experiences and derived recommendations. Key considerations for effective partnerships were drawn inductively by the authors from study experiences, materials, and reflexive discussion. FINDINGS: Six core areas were identified. These were four action areas-(1) Agree on the value; (2) The time to start partnering is now; (3) Ask not assume; and (4) Push back on 'we always have'-(5) barriers and tensions, and (6) unexpected benefits. The reflections indicated that genuine partnerships and engagements were possible with living experience experts in research and design teams. These required resourcing and focussed actions to promote partnership. Despite some structural changes that encourage partnering, there are considerable barriers to this engagement; however, benefits beyond the expected ones can be realised. CONCLUSION: Genuine partnerships in technology research and design with living experience experts are possible and lead to benefits for the team, research outcomes, and technologies. Recommended actions could support expansion of effective partnerships with people living with dementia and care partners as well as other partnerships in research.

"Building the Threads of Connection that We Already Have": The Nature of Connections via Technology for Older People.

Objectives: The social connectedness of older people is of increasing concern. Technology has been suggested for enhancing social inclusion. This study aimed to explore the nature and quality of connections via technology.Methods: Qualitative exploration of experiences, stories, and needs was undertaken through semi-structured interviews with older (7) and middle-aged (3) adults with rich experience of connections via technology in Australia and England. Core aspects of connections through technology were constructed through interpretive description analysis.Results: Four key aspects were: 1. The caliber of connections: descriptions of a range of subjective quality of connections and characteristics of good connections; 2. Experiences of poor connection (mis- and dis-connection) including descriptions of experiences creating isolation; 3. Reasons to connect described the purposes of technology-based connections including connecting with others, themselves and places important to them; 4. Making connections work described active strategies to enhance connection.Conclusions: Using technology is part of the social engagement of many people. Considering the related feelings of connection and support strategies and needs could enhance future research and practice with older people.Clinical implications: The different characteristics and potential positive and negative experiences of connection via technology need consideration in measuring social isolation and supporting older adults.

"You've got to keep moving, keep going": Understanding older patients' experiences and perceptions of delirium and nonpharmacological delirium prevention strategies in the acute hospital setting.

AIMS AND OBJECTIVES: To explore older inpatients' experiences and perceptions of delirium and nonpharmacological delirium prevention strategies (NDPS). BACKGROUND: Delirium is a distressing and serious complication in hospitalised older adults. NDPS (supporting nutrition, mobility and cognitive participation) have strong supporting evidence. Few studies have explored older inpatients' perspectives of these strategies. This information may assist staff to better support patient participation in NDPS. DESIGN: Qualitative study using an interpretive descriptive (ID) methodological approach to explore older patient's experience of delirium and NDPS. METHODS: Structured interviews of inpatients aged over 65 years across 6 medical and surgical wards explored patients' experiences and perceptions of delirium and prevention activities related to nutrition, mobility and cognition; and barriers and enablers to participation. Reporting used COREQ. RESULTS: Twenty-three participants were included (12 male, 11 reported delirium experience). Participants reported a range of physiological, emotional and psychological responses to delirium, hearing about delirium was different to experiencing it. Most participants were aware of the benefits of maintaining nutrition and hydration, physical activity and cognitive engagement in hospital. Barriers included poor symptom control, inflexible routines and inconsistent communication, whilst enablers included access to equipment, family involvement, staff encouragement and individual goals. These were organised into themes: outlook, feeling well enough, hospital environment, feeling informed and listened to, and support networks. CONCLUSION: A more patient-centred approach to delirium prevention requires consideration of older people's values, needs, preferences and fit within the hospital environment and routines. Feeling informed, listened to and receiving support from staff and family carers can improve older inpatients' engagement in NPDS to prevent delirium in hospital. RELEVANCE TO CLINICAL PRACTICE: Nurses are ideally placed to improve patient participation in NDPS through holistic assessment and care, addressing symptoms, providing clear information about delirium and delirium prevention, and facilitating family carer support and patient interactions.

Implementation and evaluation of a driving cessation intervention to improve community mobility and wellbeing outcomes for people living with dementia: study protocol of the 'CarFreeMe' for people with dementia program.

BACKGROUND: Giving up driving is a pivotal life event and universal challenge for people living with dementia and their families, and a complex area of clinical practice for health professionals who monitor driving cessation. The best outcomes are for individuals to plan for and eventually cease driving, however with insufficient support programs in place, many avoid the issue until it is reaches a crisis point. This program of research investigates a comprehensive support- and education-based intervention targeted at people living with dementia and their care partners who are managing driving cessation. The primary aim of this research is to determine the effectiveness of the program through a cluster randomized controlled trial. METHODS/DESIGN: The intervention (CarFreeMe) is an intensive program delivered by a trained health professional that addresses practical and emotional needs relevant to driving cessation. The seven module program is person-centred, covering awareness raising, adjustment, and practical support that is individualized according to geographic location and the particular goals and preferences of participants. A cluster randomized controlled trial will evaluate the effectiveness of the program. Evaluation will take place pre-intervention, immediately following, and three months post-intervention. Clusters are randomized to either intervention or usual treatment. Participants within clusters will be recruited via primary and secondary care clinics, community agencies, service providers, local media, social media, support groups, and word of mouth. The primary outcome measure for persons with dementia and their care partners is lifespace, collected via (i) smartphone GPS technology and (ii) self-reported number of episodes away from home (during the past week). Secondary outcomes include safe alternative transport status, wellbeing, depression, anxiety, and self-efficacy, which will be collected from dyads. Caregiving strain will be collected from care partner/family member only. A process evaluation of the intervention will also be undertaken. DISCUSSION: There is an urgent need for therapeutic approaches to supporting people living with dementia and their families to negotiate the complex decision making involved in deciding to change their approach to driving. The driving cessation intervention may fill an important gap in service delivery to people living with dementia who are adjusting to life without driving. TRIAL REGISTRATION: Australian and New Zealand Clinical Trials Registry ACTRN12618000388213 , 15 March 2018.

Parallel-Forms Reliability and Clinical Utility of an Application Version of the Activity Card Sort Australia (18-64).

OBJECTIVE: This study examined the parallel-forms reliability of a web application (app) of the Activity Card Sort Australia for adults ages 18-64 and assessed its clinical utility. METHOD: Forty-eight participants completed the app and card versions of the tool within a 2- to 3-wk interval and provided feedback via a purpose-designed survey. Intraclass correlation analysis tested parallel-forms reliability. RESULTS: The app demonstrated acceptable parallel-forms reliability for overall retained activity level (r = .75, p < .001), the daily life domain (r = .77, p < .001), and the recreation and relaxation domain (r = .74, p < .001), but not for the physical activity domain (r = .59, p < .001). Clinical utility responses suggested good acceptance of both versions. CONCLUSION: The results suggest that further studies are required before the app version can be used for research or in clinical settings.

Understanding the lived experiences of Parkinson's disease and deep brain stimulation (DBS) through occupational changes.

BACKGROUND: Deep brain stimulation (DBS), a surgically based treatment for people living with Parkinson's disease (PD), can result in a significant improvement of motor symptoms. However, the broader impact of DBS and the changes it creates are not well understood. Greater understanding of the experiences and needs related to DBS would enable development of relevant outcome measures and supports. OBJECTIVES: To explore the lived experiences of people undergoing DBS for Parkinson's disease. METHODS: A descriptive phenomenological study was undertaken exploring experiences, perspectives and outcomes with key stakeholders. Semi-structured, audiotaped interviews were undertaken with people with PD who have had DBS, their family members and health professionals across four states and territories in Australia. RESULTS: Perspectives and experiences of 14 people with PD undergoing DBS, 10 family members and 11 health professionals were analysed. Occupations emerged as a key aspect throughout the DBS experience. Two major themes captured the role of occupation in relation to DBS: Occupations as a barometer, where occupational experiences and performances shaped people's understanding of their condition, the impact of treatments and their overall adjustment; and Shifting occupational identity where the life transition of DBS altered the occupational experiences of relationships, volition, roles and responsibilities of people with PD and their family members. CONCLUSION: Occupational experiences and changes served as an important way for people with PD and their families to understand and communicate their experiences of PD and related treatments. There is an identified need for outcome measures and clinical education and interventions to reflect this.

Family members' experiences of driving disruption after acquired brain injury.

PRIMARY OBJECTIVE: 1) To explore family members' lived experiences of driving disruption at early and later stages of the recovery continuum following acquired brain injury (ABI). 2) To describe health-related quality of life of family members of individuals with ABI who are experiencing driving disruption. RESEARCH DESIGN: Mixed methods phenomenological research approach. METHODS AND PROCEDURES: Semi-structured interviews and health-related quality of life questionnaires were conducted with 15 family members of individuals with ABI (early group: 1-12 months post-injury, n = 6; later group: >1 year post-injury, n = 9). RESULTS: Two main themes were identified: Different for everyone: how driving disruption affects families, and Making it harder: context of driving disruption. The challenges of driving disruption were reported more frequently and with a more intense focus by family members who were caring for their relative for more than 1 year post-injury. This group also reported higher caregiver strain and poorer health-related quality of life. Reduced satisfaction with life, poor mental health and affected family functioning were reported by both groups. CONCLUSIONS: Driving disruption impacts on family members and has long-lasting consequences. It is important for clinicians to work with family members to manage these challenges even years after ABI and consider individual contextual factors.

Parkinson's Disease and Driving Cessation: a Journey Influenced by Anxiety.

OBJECTIVES: In addition to the motor and cognitive symptoms that people with Parkinson's disease (PD) typically experience, psychiatric symptoms such as anxiety are also commonly experienced by people with PD. The overall purpose of the current study was to explore driving and driving cessation for people with PD and their families. METHODS: A descriptive phenomenological approach was employed using semi-structured interviews and 34 interviews were conducted overall (22 participants with PD and 12 family members). RESULTS: Experiences of anxiety and worry that had an impact on driving and driving cessation arose from the data, and this article specifically captured the lived experience of anxiety with driving and driving cessation for people with PD and their families. CONCLUSIONS: Findings reveal that the experience of anxiety while driving, as well as anticipatory anxiety and/or worry related to driving cessation, affect the driving experiences and wellbeing of people with PD. CLINICAL IMPLICATIONS: Implications of the study findings are outlined and aim to provide information about the needs to enable future clinical directions to be developed.

Can smartphones measure momentary quality of life and participation? A proof of concept using experience sampling surveys with university students.

BACKGROUND: Understanding quality of life and participation is a key aspect of occupational therapy research. The use of smartphones to deliver experience-sampling surveys may provide an accessible way to monitor these outcomes. This study used smartphone-based experience sampling methods (ESM) to investigate factors influencing momentary quality of life (mQOL) of university students. METHODS: A convenience sample of students at an Australian university participated. Using a custom smartphone application, ESM surveys were sent six to eight times, every second day, over a week. Participants indicated their mQOL, occupational participation, occupational enjoyment, social context and location via surveys and provided demographic and health information in a single self-report questionnaire. The relationship between mQOL and variables was analysed at the survey level using logistic regression. RESULTS: Forty students completed 391 surveys. Higher mQOL was significantly related to participation in productive occupations (z = 3.48; P = 0.001), moderate (z = 4.00; P < 0.001) or high occupational enjoyment (z = 7.06; P < 0.001), being with someone (z = 2.15, P = 0.031), being at home (z = 2.49; P = 0.013) and an excellent self-rated health status (z = 2.35; P = 0.019). The magnitude of differences in mQOL was small. CONCLUSION: This study suggests that mQOL amongst university students relates to personal, environmental and occupational factors. The use of smartphone-based ESM appears to be a practical approach for investigating participation and QOL. Further research utilising a more diverse sample, analysing at the individual level, and using ESM in conjunction with other methodologies is recommended.

"The biggest problem we've ever had to face": how families manage driving cessation with people with dementia.

BACKGROUND: It is recognized that people with dementia are likely to need to stop driving at some point following diagnosis. Driving cessation can lead to negative outcomes for people with dementia and their family caregivers (FC), who often experience family conflict and tension throughout the process. Family experiences surrounding driving cessation have begun to be explored but warrant further examination. METHODS: Using a descriptive phenomenological approach, semi-structured interviews were undertaken with key stakeholders, including 5 retired drivers with dementia, 12 FC, and 15 health professionals (HP). Data were analyzed inductively to explore the needs and experiences of people with dementia and FC. RESULTS: The data revealed a range of possible interactions between people with dementia and FC. These were organized into a continuum of family dynamics according to levels of collaboration and conflict: in it together, behind the scenes, active negotiations, and at odds. At the in it together end of the continuum, people with dementia and FC demonstrated collaborative approaches and minimal conflict in managing driving cessation. At the at odds end, they experienced open conflict and significant tension in their interactions. Contextual factors influencing family dynamics were identified, along with the need for individualized approaches to support. CONCLUSIONS: The continuum of family dynamics experienced during driving cessation may help clinicians better understand and respond to complex family needs. Interventions should be tailored to families' distinctive needs with consideration of their unique contextual factors influencing dynamics, to provide sensitive and responsive support for families managing driving cessation.