Little is known about the general medicines management issues for people with dementia living in the community. This review has three aims: firstly to explore and evaluate the international ...literature on how people with dementia manage medication; assess understanding of medicines management from an informal carers perspective; and lastly to understand the role that healthcare professionals play in assisting this population with medicines management.
A mixed studies review was conducted. Web of Knowledge, PubMed and Cochrane Library were searched post-1999 for studies that explored medicines management in people with dementia dwelling in the community, and the role healthcare professionals play in supporting medicines management in people with dementia. Following screening, nine articles were included. Data from included studies were synthesised using a convergent synthesis approach and analysed thematically to combine findings from studies using a range of methods (qualitative, quantitative and mixed methods).
Four themes were generated from the synthesis: The nature of the disease and the effects this had on medicines management; the additional responsibilities informal carers have; informal caregivers' knowledge of the importance of managing medication and healthcare professionals' understanding of medicines management in people with dementia. Consequently, these were found to affect management of medication, in particular adherence to medication.
This review has identified that managing medication for people with dementia dwelling in the community is a complex task with a frequently associated burden on their informal caregivers. Healthcare professionals can be unaware of this burden. The findings warrant the need for healthcare professionals to undergo further training in supporting medicines management for people with dementia in their own homes.
Aim
This pilot study investigated the acceptability and usefulness of 4 weekly Positive Behaviour Support (PBS) education sessions (delivered face-to-face and online) for family carers of individuals ...diagnosed with behavioural-variant frontotemporal dementia (bvFTD). These sessions were adapted from the Family-directed Approach to Brain injury (FAB)-PBS program to the FTD population.
Methods
A pre-test post-test mixed-methods design was utilized. Primary outcome measures included a Carer Confidence questionnaire and post-intervention Feedback Questionnaire. Assessments were conducted prior to the 4-week education program, immediately following the final session and a 3 months follow-up.
Results
Ten family carers completed the 4 PBS education sessions and indicated that the program was helpful in providing behaviour support. No significant changes in confidence ratings were found before and following the education sessions. A majority of participants, however, reported positive changes to their approach in providing behaviour support, with key themes including ‘recognising the function of behaviour’, ‘changing their own behaviour’ and ‘promoting a calmer approach’.
Conclusions
The FAB-PBS education sessions demonstrate to be an acceptable approach to increasing the capability of family carers in providing behaviour support to individuals with FTD, which will need to be confirmed in a larger feasibility study.
Purpose of the Review
The definition of respite care remains unclear and its purpose and effectiveness are unproven till date. This paper reviews the current evidence regarding definition and ...efficacy of respite care, as well as the different programs, models, and interventions employed to deliver the same.
Recent Findings
A scoping search identified the relevant literature to be included in the review. The current evidence reiterates the lack of clarity in defining and delineating the purpose of respite care. Recent empirical evidence supports the effectiveness of respite care with clear benefits for the carers, patients, their families, and the healthcare system. Along with inpatient, home, and hospice care, respite care is considered as an essential component of palliative care.
Summary
Evidence, although weak, supports the efficacy of respite care. High-quality studies with clear outlining of the scope of the services and resolution of ambiguities pertaining to its definition are warranted to fill the gaps in knowledge.
Introduction: Informal caregivers are the backbone of recovery for people with severe mental disorders in South Africa, particularly in rural areas where access to mental health services is limited. ...While their unique contribution and the subsequent burden arising from occupying the role of informal caregiver are acknowledged, there is limited evidence on the extent of the subjective and objective burdens among informal caregivers of people with severe mental disorders in rural areas. This article reports on a study that aimed to establish the extent of subjective and objective burdens among informal caregivers of people with severe mental disorders in rural South Africa.
Methods: A descriptive quantitative cross-sectional design was used. Data were gathered through structured interviews with 170 informal caregivers of people with severe mental disorders attending an outpatient clinic at a rural hospital in South Africa. A structured questionnaire guided the interviews and included demographics and caregiving characteristic information. Montgomery, Gonyea and Hooyman's scale was used to assess objective and subjective burdens. Data was analysed descriptively using Stata v15.
Results: The majority of the participants were female informal caregivers (83.5%) between the ages of 45 and 64 years (45.3%), and parents represented the largest proportion (45.3%) of caregivers. The global burden scores revealed that most informal caregivers reported moderate-to-severe objective burden and mild-to-moderate subjective burden. Significant associations with objective burden were established for age, gender and residence ('p'=0.025, 'p'=0.034 and 'p'=0.038, respectively), and subjective burden yielded significant associations with daily caregiving ('p'=0.012).
Conclusion: Caring for people with severe mental disorders is associated with high levels of objective and subjective burdens. The present study highlights the need to integrate the assessment of burdens among informal caregivers of people with severe mental disorders in routine clinical practice. Additionally, the study urgently calls for the development of strategies to support informal caregivers to ensure successful community reintegration among people with severe mental disorders.
In involuntary psychiatric admission, used globally, professionals or caretakers decide upon hospitalization regardless of what the person with psychosocial disabilities decides. This raises ...clinical, ethical, legal, and human rights concerns, and it goes against Convention on the Rights of Persons with Disabilities (CRPD). CRPD mandates that member states respect the autonomy of people with disabilities. Through Article 12, it recognizes full enjoyment of legal capacity for persons with disabilities. Implementation of Article 12 is challenging in every country, and exploring all the stakeholders' experiences at admission decision-making will help us to understand the challenges that the current psychiatry system poses for service users to exercise their autonomy and identify the areas where service users need support to have their rights, will, and preferences respected.
To describe the experiences of service users, informal carers, and professionals in involuntary psychiatric admission decision-making and throughout the subsequent involuntary admission. We explored the support that the service users need to have their rights, will, and preferences respected.
A search of twelve databases in medicine, sociology, and law in Danish, English, Japanese, Norwegian, Portuguese, Spanish, and Swedish was conducted in 2017 and 2018, limited to the past 10 years, using terms such as “involuntary,” “admission,” “mental illness,” and “experience”. The search identified 682 articles. Four researchers independently reviewed the articles to find those that completed original qualitative or mixed method studies exploring experiences of involuntary psychiatric admission among adults. We added seven publications from the articles' references, contacted experts in the field (no publications were added), and excluded two articles that were in German. Three researchers analyzed the articles' results using Thematic Analysis (PROSPERO registration number CRD42019072874).
Overall, 37 articles were included from 11 countries; they involved 731 service users, 100 informal carers, and 291 mental health professionals. We identified a lack of communication and a power imbalance among the stakeholders, which was exacerbated by the professionals' attitudes. At admission decision-making, the service users wanted to be heard and wanted to understand the situation. The families felt responsibility for the service users, they were careful not to ruin relationships, and they struggled to obtain support from the mental health system. Professionals believed that threats or harming others should lead to admission regardless of what the service users or their families felt. Professionals sometimes felt that it was not necessary to explain the information to the service users because they would not understand. Professionals were concerned and frustrated with difficulties in coordinating among themselves. During admission, service users struggled with the ward environment and relationship with staff; they most objected to coercion, such as forced medication. Families were frustrated that they were not involved in the treatment planning, especially as the service users moved toward discharge. The professionals often rationalized that coercion was necessary, and they believed that they knew what was best for the service users.
A lack of communication and a power imbalance among the stakeholders hindered respect for the service users' rights, will, and preferences. This was exacerbated by professionals rationalizing coercion and assuming that service users were incapable of understanding information. Services that encourage communication and overcome power imbalances (e.g. Crisis Plans, Family Group Conferencing) combined with stronger community mental health support will respect service users' rights, will, and preferences and avoid substituted decision-making on issues such as involuntary admission and forced medication.
•First review of involuntary psychiatric decision-making from a new perspective.•New perspective is that of service users, informal carers, and professionals.•Provides global and layered perspectives via many disciplines and languages.•Identifies areas and types of support that will respect users' rights, will, and preferences.
iSupport is an online program developed by the World Health Organization to provide education, skills training, and social support to informal carers of persons with dementia. This pilot study ...examines the feasibility of the protocol for a main effectiveness trial of iSupport-Portugal and explores how the intervention and control arms compare over time on well-being outcomes.
A mixed-methods experimental parallel between-group design with two arms is followed. Participants were recruited nationwide, by referral or advertising, through the National Alzheimer's Association. Inclusion criteria are being Portuguese adults, providing e-consent, providing unpaid care to someone with dementia for at least 6 months, experiencing relevant scores on burden (≥ 21 on ZBI) or depression or anxiety (≥ 8 on HADS), and using webpages autonomously. Participants were consecutively randomized to receive iSupport-Portugal or an education-only e-book and were not blinded to group assignment. Data were collected online with self-administered instruments, at baseline, 3 and 6 months after. Outcomes comprise caregiver burden, depression, anxiety, QoL, positive aspects of caregiving, and self-efficacy. Generalized estimating equations were used to estimate group, time, and group-by-time effects. Intervention engagement data were extracted from iSupport's platform. Semi-structured interviews were conducted.
Forty-two participants were allocated to the intervention (N = 21) and control (N = 21) arms. Participation (78.1%) and retention rates (73.8%) were fair. More carers in the control arm completed the study (N = 20, 95.2%) than in the intervention arm (N = 11; 52.4%) (χ
= 9.98, p = .002). Non-completers were younger, spent less time caring, and scored higher on anxiety. Among carers in the intervention arm, the average attendance rate was of 53.7%. At post-test 38.9% of participants still used iSupport; the remainder participants interrupted use within 2 weeks (Mdn). For per-protocol analyses, significant group-by-time interaction effects favouring the intervention were found for anxiety (Wald χ2 = 6.17, p = .046) and for environmental QoL (Wald χ
= 7.06, p = .029). Those effects were not observed in intention-to-treat analyses adjusted for age. Interviewees from the intervention arm (N = 12) reported positive results of iSupport on knowledge and on experiencing positive feelings. No adverse effects were reported.
This study provides information for a forthcoming full-scale effectiveness trial, as on the acceptability and potential results of iSupport-Portugal. iSupport is suggested as a relevant resource for Portuguese carers.
ClinicalTrials.gov, NCT04104568 . 26/09/2019.
Background
Policies to combat the COVID-19 pandemic have disrupted the screening, diagnosis, treatment, and monitoring of noncommunicable (NCD) patients while affecting NCD prevention and risk factor ...control.
Aims
To discuss how the first wave of the COVID-19 pandemic affected the health management of NCD patients, identify which aspects should be carried forward into future NCD management, and propose collaborative efforts among public–private institutions to effectively shape NCD care models.
Methods
The NCD Partnership, a collaboration between Upjohn and the European Innovation Partnership on Active and Healthy Ageing, held a virtual Advisory Board in July 2020 with multiple stakeholders; healthcare professionals (HCPs), policymakers, researchers, patient and informal carer advocacy groups, patient empowerment organizations, and industry experts.
Results
The Advisory Board identified barriers to NCD care during the COVID-19 pandemic in four areas: lack of NCD management guidelines; disruption to integrated care and shift from hospital-based NCD care to more community and primary level care; infodemics and a lack of reliable health information for patients and HCPs on how to manage NCDs; lack of availability, training, standardization, and regulation of digital health tools.
Conclusions
Multistakeholder partnerships can promote swift changes to NCD prevention and patient care. Intra- and inter-communication between all stakeholders should be facilitated involving all players in the development of clinical guidelines and digital health tools, health and social care restructuring, and patient support in the short-, medium- and long-term future. A comprehensive response to NCDs should be delivered to improve patient outcomes by providing strategic, scientific, and economic support.
Accessible summary
What is known on the subject
Family members and friends (informal carers) are very important for providing support to people with mental health difficulties.
When these carers are ...included to care planning patients seem to benefit, as they are less likely to relapse.
What the paper adds to existing knowledge
There are three types of interventions including carers in the patients'transition 1) programmes that offer education in hospital; 2) programmes that involve carers in planning the patients discharge; and 3) programmes that involve carers in hospital care, discharge planning and also follow‐up in the community.
Interventions including carers that take place both in the hospital and the community have the clearest evidence for benefit on relapse reduction.
What are the implications for practice
Comprehensive interventions have the best evidence for effectiveness but challenges in their implementation and resourcing should be considered.
It might worth trying to identify and test simpler interventions focusing on discharge planning that can be used in busy services and require more limited resources whilst providing opportunities for the participation of carers.
Introduction
Involving informal carers (family and friends of patients) in mental health interventions can lead to positive clinical and psychosocial outcomes such as relapse prevention or treatment adherence.
Aim/Question
To explore the evidence on the effectiveness of different models that involve carers in the transition between hospital and community mental health care.
Methods
Five electronic databases (PsycINFO, CINAHL, MEDLINE, Embase and Scopus) and Grey literature (Open Grey and Grey Literature report) were systematically searched. The results were analysed using a narrative synthesis.
Results
Fourteen papers were identified. They described twelve interventions that were categorized into three groups: 1) purely educational programmes in preparation of discharge; 2) programmes that involved carers in planning the transition from the mental health inpatient treatment to community mental health services; and 3) programmes that bridged into the aftercare involving carers in community follow‐up. The most comprehensive interventions, i.e. those including psychoeducation, care planning and aftercare follow‐up were better evaluated and showed a clearer benefit in improving long‐term outcomes and, in particular, reduce re‐hospitalization.
Implications for practice
Comprehensive interventions showed the clearest benefit in improving long‐term clinical outcomes of patients. Future research should explore implementation, costs and cost‐effectiveness, as comprehensive interventions delivered across different settings are likely to require wide‐ranging organizational changes and significant resources.
Purpose
To examine the illness perceptions of informal carers of persons with depression, using the theoretical framework of Leventhal’s Common-Sense Model (CSM) and to determine whether these ...illness perceptions are predictors of anxiety and depression, as measures of psychological well-being.
Methods
A cross-sectional survey was conducted with 94 Maltese individuals caring for a person with depression within a community setting. The informal carers completed the modified Illness Perception Questionnaire (IPQS-Relatives version) and the Hospital Anxiety and Depression Scale (HADS). Data were analysed using descriptive statistics, Spearman’s rank order correlations and ANCOVA regression models, to identify predictors of anxiety and depression respectively in the informal carers.
Results
The informal carers perceived depression as a cyclical condition, having negative consequences on both the patient and on themselves. Participants perceived the causes of depression to be mainly psychosocial in nature and generally viewed the treatment as effective. Caring for a person with depression was perceived as having a considerable negative emotional impact on them. Years of caring was identified as a predictor of anxiety accounting for 20.4% of the variance, and timeline chronicity beliefs, consequences (relative) and illness coherence were identified as predictors of depression, accounting for 56.8% of the variance.
Conclusion
Illness cognitions are significant predictors of depression, thereby suggesting that cognition-based interventions may be effective in targeting depression in these informal carers. Thus, health professionals should explore the carers’ personal understanding of the disease, their timeline beliefs and the perceived consequences of providing care, as they relate to their psychological well-being.
Aims
To outline and examine evidence related to the meaning of ‘psychosocial vulnerability’ among caregivers of persons with chronic illnesses.
Background
The number of informal caregivers continues ...to rise globally. Their risk of psychosocial vulnerability is frequently overlooked, but understanding their psychosocial vulnerability may offer insights into meeting their needs.
Design
Scoping review following the PRISMA 2020 extension guidelines.
Data sources
The databases CINAHL, Embase, Medline/Pubmed, Cochrane Library, PsycINFO, Web of Science, Google Scholar, Lenus and ProQuest were systematically searched to identify original research. No date limit was set, and 23 studies were included.
Review methods
A five‐step approach using the Arksey and O'Malley framework. Thematic analysis guided data analysis.
Results
Carers' psychosocial vulnerability occurs when they experience barriers to resources while access and use of supports reduce risk. Antecedents of psychosocial vulnerability include a carer's age and sex, socioeconomic status and their health and wellbeing. Psychosocial vulnerability affects carers' relationships and causes personal losses.
Conclusions
The concept of carers' psychosocial vulnerability is complex. Recognition of carers at risk for psychosocial vulnerability would help nurses direct relevant support and information to carers who need it most.
Summary statement
What is already known about this topic?
Carers play an increasingly important role in the delivery of holistic care in the community.
Barriers and access to relevant support and homecare remain an issue for carers and patients worldwide.
Caregivers frequently succumb to vulnerability as a result of their new identification with the role as well as the duty tied to the role.
What this paper adds?
Findings offer an understanding of factors which may contribute to carers' psychosocial vulnerability.
An overview of the impact of caring for individuals with a chronic illness on carers' lives.
The implications of this paper
Recognition of those at risk for psychosocial vulnerability could enable health care professionals to provide the relevant support and information to carers who need it most.
Further qualitative research is needed to increase understanding of carers' experience of caring for someone with a chronic illness.
Carers must be seen as essential components of healthcare in order to ensure connection between policy and service delivery.
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