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.     

Value of case studies in disaster assessment?

Case studies can be useful in assessing and learning lessons from emergency situations. In this paper, different uses for disaster case studies, are explored with identification of potential pitfalls that should be avoided. In addition, ways to improve the rigor and significance of case studies are suggested. Case studies can be used as examples or as a research tool. If conducted properly, they can provide robust and compelling results. It is argued that sharing a common guide to conducting and writing case studies among all disaster risk reduction professionals could improve the quality of case study reports and thereby strengthen their value in advancing the prevention, preparedness, and management of disasters and emergencies.     

Measuring and understanding patterns of change in intervention studies with children: Implications for evidence-based practice†

Purpose: Comparisons across studies of the effects of intervention are problematic. Such analyses raise both methodological and statistical challenges. A single data set was examined to investigate whether different established approaches to measuring change in children with specific language impairments alter the conclusions that can be drawn regarding the efficacy of an intervention.

Methods: Measures of cognitive and language skills were collected at baseline and at six months following an intervention. Reliable and valid psychometric measures were used. Data from the intervention study were used to explore the patterns of results obtained using four different measures of change: change of diagnostic category, differential improvement across assessment measures, item specific changes and predictors of individual change.

Results: Associations between different tests purporting to measure similar constructs were modest. The measures identified different children as impaired both at baseline and follow-up. No effect of intervention was evident when a categorical analysis of impairment was used. Both treatment and comparison children changed significantly across time on the majority of measures, providing evidence of development, but specific effects of the intensive intervention were evident using ANCOVAs. Item analysis indicated that one of the standardized language tests adopted in the evaluation was insensitive to change over a six month period. Change in individual children's performance was predicted by language level on entry to the project.

Conclusion: The implications of the results are discussed in terms of the range of analytic approaches available to intervention researchers and the need to consider combinations of methods when analysing outcome data.     

‘Putting it together’: Unfolding case studies and high-fidelity simulation in the first-year of an undergraduate nursing curriculum

The use of simulation as a teaching strategy in undergraduate nursing education is gaining increasing credibility and popularity. This article describes a study undertaken to evaluate first-year undergraduate nursing students' level of satisfaction with a new model of teaching clinical skills using unfolding case studies in a high-fidelity simulated clinical setting. The design incorporated a case study design conducted over 4 × 6 h simulation sessions. Participants included 47 first year Bachelor of Nursing Science students, three academic staff and two standardised patients. Findings from the study provide qualitative and quantitative evidence to support a high fidelity simulated model of teaching clinical skills development for first year undergraduate nursing students. High positive scores in all sections of the student survey provide quantitative evidence of student's satisfaction with all elements of the teaching model and qualitative data from interviews supporting this claim. Additionally, analysis of interview data provides qualitative evidence to support the value of the learning experience for students and academics, and students desire to participate more frequently in simulation sessions.     

Predictors of mood disorders in cancer patients’ caregivers

Introduction

Patients’ care has been associated with a high burden of psychological symptoms in caregivers. This study identifies characteristics associated with mood disorders in caregivers of cancer patients.

Methods

One hundred fifty-two caregivers, aged 24–78 years (average age 51; 60 % females), of cancer patients completed Family Strain Questionnaire (FSQ), Hospital Anxiety and Depression Scale (HADS), Impact of Event Scale (IES), and Coping Orientations to the Problems Experienced. We combined this information with patient chart abstraction data.

Results

Sixty-three percent of females and 38 % of males were scored as positive when screened for mood disorders, as measured by HADS (total score ≥16), and 17 and 5 % for emotional distress as measured by IES (total score ≥50). High scores in FSQ-satisfaction with family relationships and FSQ-need for more information about cancer, and low scores in FSQ-thoughts about death are reported. FSQ-emotional burden and FSQ-problems in social involvement are the areas more compromised in females, compared to males. Females, compared to males, use emotional-oriented coping strategies more frequently. Factors independently associated with mood disorders included emotional burden, problems in social involvement, and non-attendance of meeting places; help and assistance from public local services (for patients) decreased the risk of mood disorders in caregivers.

Conclusions

Prevalence of mood disorders is high in cancer patients’ caregivers. These results highlight the need to develop family intervention strategies to minimize the impact of patient’s care on caregivers’ mental health.     

Benefits and burdens: family caregivers’ experiences of assistive technology (AT) in everyday life with persons with young-onset dementia (YOD)

Abstract

Background: People with dementia and their family caregivers may benefit from assistive technology (AT), but knowledge is scarce about family carers’ (FC) experiences and involvement in the use of AT in everyday life.

Aim: To examine the FC roles and experiences with AT as means of supporting people with young onset-dementia (YOD).

Method: Qualitative interview study with follow-up design. Repeated semi-structured interviews were conducted with 13 FC of people with YOD, participating in an ongoing intervention study investigating the families’ use and experiences of AT in everyday life.

Results: Six main themes emerged: (1) timely information about AT; (2) waiting times; (3) AT incorporated into everyday living; (4) AT experienced as a relief and burden; (5) appraisal of AT qualities and (6) the committed caregiver.

Conclusions: The study found benefits for the FC, especially with simply designed AT, but also several barriers for successful use. A committed caregiver is vital throughout the process. Users will need professional advice and support, and occupational therapists may have a significant role in the process. Interventions implementing AT must be based on analysis of the needs of the person with YOD and the carers: their capabilities, preferences, embodied habits, and coping strategies.

• Implications for Rehabilitation

• Committed family carers (FC) play an important, often decisive, role in providing support for the person with young-onset dementia (YOD, onset <65 years) to use and benefit from the AT.

• The simpler the AT, the better. The AT should be introduced at “the right time”, before the cognitive and adaptive reduction is too great. The “window” for implementation may be short.

• AT has potential to ease caregiving and give relief for FC. However, many barriers, difficulties and problems must be attended to.

• A system for individualized support over time is necessary for implementing AT for this group.

     

Cancer caregivers’ perceptions of an exercise and nutrition program

Purpose

Little research has addressed exercise and nutrition-based interventions for cancer caregivers. This study explored cancer caregivers’ perceptions of participating in a structured exercise and nutrition program alongside cancer survivors for whom they provided care.

Methods

In-depth, semi-structured interviews were conducted by one interviewer with 12 cancer caregivers about their experiences participating in a structured, 12-week exercise and nutrition program designed for cancer survivors and caregivers to complete concurrently. Interviews were conducted until data saturation was reached.

Results

Inductive content analysis from individual interviews indicated three separate, but interrelated, themes: (1) the program was a positive mechanism through which caregivers shared and supported the cancer journey concurrently with survivors, (2) the program led to perceived physical and psychological benefits for both caregivers and survivors, and (3) participants perceived that participation in the program led to feeling increased social support in their caregiving duties.

Conclusions

Findings from this study suggest that participating in an exercise- and nutrition-based intervention is viewed positively by caregivers and that the outcomes are seen as beneficial to both caregivers and survivors. Interventions that address the health needs of both members of the caregiver–survivor dyad should continue to be encouraged by allied health professionals.     

Delusional misidentification in Parkinson’s disease: report of two cases and a review

Syndromes of delusional misidentification consist of disordered familiarity and have been reported in diverse diagnoses, including Parkinson’s disease. Although the most common delusional misidentification is Capgras syndrome, in which the sufferer believes a familiar person has been replaced by an identical imposter, other forms have been also described. The pathogenesis of delusions of misidentification appears to require dysfunction of or connection to a left cerebral cortical area involved in recognition of familiarity, and also right frontal cortex serving belief evaluation. Two cases of Parkinson’s disease with an unusual delusional misidentification, intermetamorphosis, are presented, along with their improvement with pimavanserin, a novel atypical antipsychotic medication.     

Experiences of and factors associated with dietary sodium adherence in heart failure from patients’ and their caregivers’ perspectives: A qualitative study

This study explored experiences of dietary sodium adherence among patients with heart failure and their caregivers. Qualitative data were collected from 22 patients and 18 caregivers using an interview guide and were analyzed using content analysis. Four themes were (1) lack of adherence to low-sodium diet, (2) several barriers to dietary sodium adherence, (3) a few facilitators of dietary sodium adherence, and (4) distorted perceptions of dietary education from healthcare providers. The majority of patients had poor dietary sodium adherence. Distorted perceptions, insufficient knowledge, disadvantages of dietary sodium adherence, and lack of family support were barriers to dietary sodium adherence, and family support was a facilitator. The majority of patients received dietary education from their healthcare providers but had little knowledge about the detailed content and the connection to heart failure management. More effective interventions reflecting patients’ and caregivers’ dietary experiences need to be developed and delivered.     

Neurological patients’ and caregivers’ post-discharge challenges explored in a World Café

Problem/backgroundPost-discharge healthcare for patients with neurological conditions is indicated to be suboptimal.AimTo capture hospital discharge experiences and ramifications among patients with neurological conditions, and informal caregivers, and their recommended solutions.MethodsA modified World Café was held November 2016. A facilitator moderated structured group discussions about post-discharge challenges, displayed real-time in GroupMap. Using the software’s voting, ratings of priority challenges/issues and solutions were tabulated to identify whole group consensus.FindingsEleven adults with neurological conditions (five females) and four adult informal caregivers (three females) participated. Major post-discharge challenges were: (i) inadequate self-management instruction, (ii) feeling discharged too early, (iii) family pressured to support patient without capacity, (iv) financial impact, (v) difficulties accessing social services, (vi) social isolation, (vii) inadequate support services, and (viii) poor communication with, and between, healthcare providers. Top-ranked solutions were: (i) counseling services at symptom onset, (ii) community neurological nurse referrals to, and liaison with, services, (iii) improved communication with general practitioner, (iv) community neurological nurse facilitating financial assistance, and (v) social worker in pre-diagnostic period facilitating financial assistance and support.DiscussionPeridischarge, patients and informal caregivers face a complexity of information and services, and struggle to self-manage conditions, experiencing burden that jeopardises their health and wellbeing. Proposed solutions to post-discharge challenges emphasise self-management, psychosocial support, care coordination, health system navigation, and communication.ConclusionGeneric community neurological nurses could link hospital and community-based services. Research is required regarding which translational and after hospitalisation care model improves care coordination and continuity, and care recipients’ capacity.     

Midwives’ and health visitors’ collaborative relationships: A systematic review of qualitative and quantitative studies

ObjectivesInterprofessional collaboration between midwives and health visitors working in maternal and child health services is widely encouraged. This systematic review aimed to identify existing and potential areas for collaboration between midwives and health visitors; explore the methods through which collaboration is and can be achieved; assess the effectiveness of this relationship between these groups, and ascertain whether the identified examples of collaboration are in line with clinical guidelines and policy.DesignA narrative synthesis of qualitative and quantitative studies.Data sourcesFourteen electronic databases, research mailing lists, recommendations from key authors and reference lists and citations of included papers.Review methodsPapers were included if they explored one or a combination of: the areas of practice in which midwives and health visitors worked collaboratively; the methods that midwives and health visitors employed when communicating and collaborating with each other; the effectiveness of collaboration between midwives and health visitors; and whether collaborative practice between midwives and health visitors meet clinical guidelines. Papers were assessed for study quality.ResultsEighteen papers (sixteen studies) met the inclusion criteria. The studies found that midwives and health visitors reported valuing interprofessional collaboration, however this was rare in practice. Findings show that collaboration could be useful across the service continuum, from antenatal care, transition of care/handover, to postnatal care. Evidence for the effectiveness of collaboration between these two groups was equivocal and based on self-reported data. In relation, multiple enablers and barriers to collaboration were identified. Communication was reportedly key to interprofessional collaboration.ConclusionsInterprofessional collaboration was valuable according to both midwives and health visitors, however, this was made challenging by several barriers such as poor communication, limited resources, and poor understanding of each other’s role. Structural barriers such as physical distance also featured as a challenge to interprofessional collaboration. Although the findings are limited by variable methodological quality, these were consistent across time, geographical locations, and health settings, indicating transferability and reliability.