Exploring dimensions of social support and resilience when providing care at the end of life: a qualitative study

Background: Research shows that formal and informal social support can facilitate resilience in carers. There is a paucity of research exploring social support and resilience amongst recently bereaved informal carers.

Aim: To examine how the presence or absence of distinct dimensions of social support facilitate or hinder resilience in recently bereaved informal carers.

Participants: 44 bereaved carers, who had been identified by GP as ‘main carer’ of someone recently deceased (3–12 months), aged between 38 and 87 years old (mean= 67).

Methods: Thematic analysis then the Ecological Framework of Resilience as an organisational tool to develop overarching themes in the data. We used the Sherbourne and Stewart model to identify social support that was lacking as well as social support that was present.

Results: A range of social support types were identified. There was an emphasis on the importance of relationships with both health professionals and family members, including the care recipient. However, social support was not necessary for resilience if the participant had other resources.

Conclusions: Social support for carers providing end of life care is almost exclusively based around end of life care ‘work’. In comparison to other research our study suggests that relationships with family and health professionals are paramount. Multidimensional support is needed for carers to enhance their resilience.     

Views and experiences of care home staff on managing behaviours that challenge in dementia: a national survey in England

Aim: To determine the views of care home (CH) staff in relation to experiencing and managing behaviour that challenges (BtC) in dementia and their experiences of training.

Method: Cross-sectional survey using a self-report questionnaire, distributed to staff employed in a 20% sample of all registered dementia-specialist CHs in England, either by postal or direct distribution.

Results: Questionnaires were returned from 352 care staff (25%), representing 5% of all dementia-specialist CHs, half were CH without nursing. Respondents estimated caring for 14,585 residents, 9,361 with dementia and 5,258 with BtC. 30.2% of residents with dementia were estimated as being prescribed a medicine to control BtC. BtC reported as experienced by most respondents were: shouting (96.6%), verbal aggression (96.3%) and physical aggression (95.7%), with physical aggression viewed as most difficult to manage. Top behaviours experienced every shift were: wandering (77.8%), perseveration (68.2%) and restlessness (68.2%).

Approaches such as assessing residents, knowing them and treating them as individuals, identifying triggers, having time for them and using an appropriate style of communication, were viewed as key to managing BtC, rather than guideline-specific interventions such as massage, aromatherapy and animal-assisted therapy.

Only 38% agreed/strongly agreed medicines were useful to control BtC, which was related to the extent to which they were prescribed. Training was available, but variable in quality with on-line training being least useful and on-the job training most desirable.

Conclusion: BtC are commonly and frequently experienced by care staff, who consider individual approaches, having time and good communication are key to successful management.     

Perspectives of carers of people with intellectual disability accessing general practice: “I’d travel to the ends of the earth for the right person”⁣

Background: Informal carers often play an integral role in the lives of people with intellectual disability (ID) residing in the community. In this study, we explored the extent to which carers of people with ID believe that the health care needs of the person they care for are being accommodated by general practice.

Method: Semi-structured interviews were conducted with 25 informal carers to people with ID living in Australia.

Results: Carers of people with ID report that they experience considerable barriers to accessing general practice care on behalf of the people they care for.

Conclusions: Given the ever-increasing number of people with ID now living in the community and their vulnerability to health problems, it is imperative that future research focuses on the development of strategies to overcome the barriers identified in this study.     

Spiritual care for people with intellectual and developmental disability: An exploratory study

Background: A faith-based (pseudonym, Adam’s House – AH) and a non-faith-based care service (pseudonym, Greenleaves – GL) were explored to find out if and how spiritual support was provided for people with intellectual and developmental disabilities (IDDs).

Method: Six months were spent volunteering within each service and a mixed-methods approach was utilised including applied and ethnographic methods to explore and describe if and how spirituality was embedded within the two services.

Results: Themes found included community of value; homely functional care; and barriers to spiritual care. GL staff tended to provide what we termed “religious spiritual care” while AH staff administered both “religious” and “non-religious” spiritual-based support. This difference may be related to the type of training found only at AH which included spiritual dimensions.

Conclusion: Services could benefit from acknowledging the importance and significance of spiritual care training and education for effective and varied spiritual care for people with IDD who desire such support.     

Effect of activity-based mirror therapy on lower limb motor-recovery and gait in stroke: A randomised controlled trial

Objective: To determine the effect of activity-based mirror therapy (MT) on motor recovery and gait in chronic poststroke hemiparetic subjects.

Design: A randomised, controlled, assessor-blinded trial.

Setting: Rehabilitation institute.

Participants: Thirty-six chronic poststroke (15.89?±?9.01 months) hemiparetic subjects (age: 46.44?±?7.89 years, 30 men and functional ambulation classification of median level 3).

Interventions: Activity-based MT comprised movements such as ball-rolling, rocker-board, and pedalling. The activities were provided on the less-affected side in front of the mirror while hiding the affected limb. The movement of the less-affected lower limb was projected as over the affected limb. Conventional motor therapy based on neurophysiological approaches was also provided to the experimental group. The control group received only conventional management.

Main outcome measures: Brunnstrom recovery stages (BRS), Fugl-Meyer assessment lower extremity (FMA-LE), Rivermead visual gait assessment (RVGA), and 10-metre walk test (10-MWT).

Results: Postintervention, the experimental group exhibited significant and favourable changes for FMA-LE (mean difference?=?3.29, 95% CI?=?1.23–5.35, p?=?.003) and RVGA (mean difference?=?5.41, 95% CI?=?1.12–9.71, p?=?.015) in comparison to the control group. No considerable changes were observed on 10-MWT.

Conclusions: Activity-based MT facilitates motor recovery of the lower limb as well as reduces gait deviations among chronic poststroke hemiparetic subjects.     

The views of adults with neurodegenerative diseases on end-of-life care: a metasynthesis

Objective: Improving end-of-life care for people with neurodegenerative diseases is seen as a clinical priority. In order to do this, it is important to take into account the views expressed by people with these conditions on their experiences of this care. The purpose of this review was to provide a thematic synthesis of the views of adults with neurodegenerative diseases on end-of-life care.

Methods: After a systematic search, 13 articles were included and thematic synthesis was used to collate and interpret findings.

Results: Four analytical themes were identified; (1) Importance of autonomy and control; (2) Informed decision-making and the role of healthcare professionals; (3) Contextual factors in decision-making; (4) The pitfalls of care.

Conclusion: Participants’ views were framed by the context of their lives and experience of their illness and these shaped their engagement with end-of-life care. Given the varying disease trajectories, care needs to be individualised and needs-based, implementing palliative care in a timely way to prevent crises and loss of autonomy.     

Perceived control among migrant live-in and local live-out home care workers in Israel

Objective: To examine perceived control among live-in and live-out home care workers and to identify factors that contribute to perceived control among both types of caregiving.

Method: 338 migrant live-in home care workers and 185 local live-out home care workers were asked to report their perceived control. Burnout, satisfaction with the relationship with the care recipient and the care recipient's family, and satisfaction with social relationship were also gathered.

Results: Both types of caregivers reported high levels of perceived control, although live-in home care workers expressed more perceived control. Higher age, higher levels of satisfaction with the relationship with the care recipient and the care recipient's family and lower levels of burnout, predicted perceived control. Satisfaction with social relationship was a stronger predictor of one's perceived control among live-in home care workers.

Conclusions: Promoting social relationships outside the home care context by allowing migrant live-in home care workers to take part in social gatherings is recommended as this can strengthen their sense of perceived control.     

Health professionals’ perceptions of developing dementia services in primary care settings in China: a qualitative study

Objectives: Primary care plays a crucial role in the timely diagnosis and proper management of dementia. Evidence from low and middle income countries is much needed to inform service development in primary care and to address the dementia burden in these countries. The aim of this study was to explore community health professionals’ perceptions of dementia service development using China as a case.

Method: An interpretive study design was utilized and focus groups were used for data collection guided by a semi-structured interview guide. Each focus group lasted between 90–120 min. Thematic analysis was applied for data analysis.

Results: Twenty-one community health professionals participated in this study and three major themes were identified. These themes are: incorporating dementia components in the government-subsidized primary care services; an under-prepared workforce to meet the demand for dementia care; and an enabling environment to sustain dementia care.

Conclusion: Government policies, regulations, standards and guidelines need to be established for dementia service development in primary care to improve the home care for people with dementia and to create a dementia-friendly society. Regular education and training activities for health professionals are a way to build dementia care service capacity in primary care.     

Perceptions of psychiatry residents and non-residents on training needs and care related to patients with intellectual disability and mental health problems: A study from Singapore

Background: People with intellectual disability (ID) have higher risk of mental morbidity and specialised training may be required in their management. We explored the training needs and knowledge as well as perceptions of care of such patients among residents and non-residents working in psychiatry.

Method: The study was conducted as an anonymous survey. Questionnaires were sent to all residents and non-residents at a large psychiatric hospital in Singapore.

Results: Forty-eight out of the 76 questionnaires sent out were returned. All participants responded that postgraduate training was required in the area of ID and mental health and according to the majority, available training was inadequate. Over 90% believed that people with ID were vulnerable to exploitation and they should be under a specialist team.

Conclusion: Efforts should be made to include specialist training in psychiatry of ID in the Singapore psychiatry curriculum to enhance the knowledge and expertise of psychiatrists in this field.     

Intellectual disability in Australian nursing education: Experiences in NSW and Tasmania*

Background: Persons with intellectual disability (ID) face significant health challenges. Nurses provide health care to this population in many settings, including general practice, community care, acute care, reproductive health, and palliative care. However, since the demise of the specialist training model in the 1990s, the extent to which general nurses in Australia are educated about the health needs of people with ID is unclear.

Methods: A systematic literature mapping and documentary analysis of educational resources available to nurses in Australia was undertaken, with particular reference to New South Wales and Tasmania.

Results: Minimal education content relating to the health needs of people with ID was found in the academic programs included in this study. Where it existed, it was inconsistently applied, being made available as an aspect of professional development rather than a clearly identified educational pathway.

Conclusions: This study adds to previous findings indicating the need for change to nurse education in this area, and for cross-country comparisons with other models of nurse education in the area.     

French translation and validation of a fragile X syndrome screening checklist

Background: Fragile X syndrome (FXS) is the most common cause of inherited intellectual disability among men. This syndrome is frequently underdiagnosed in adults. The aim of this study was to develop and validate a French translation of the screening checklist Fragiele-X screeningslijst.

Method: The validation sample for the translated checklist included 22 pairs of men between the ages of 18 and 52, matched by age and degree of intellectual impairment.

Results: The translated checklist achieved coefficients of 0.92 for internal consistency, 0.90 for test-retest reliability and 0.65 for inter-rater reliability. These psychometric properties are commensurate with those of the original checklist.

Conclusion: Therefore, the translated checklist developed in this study can be considered a valid screening instrument for the detection of FXS in men with intellectual disabilities.

Abbreviations: FXS: fragile X syndrome; FMR1: fragile X mental retardation 1 (gene)     

Stroke survivor cognitive decline and psychological wellbeing of family caregivers five years post-stroke: a cross-sectional analysis

Background: Family members frequently provide long-term care for stroke survivors, which can lead to psychological strain, particularly in the presence of cognitive decline.

Objectives: To profile anxious and depressive symptoms of family caregivers at 5 years post-stroke, and to explore associations with stroke survivor cognitive decline.

Methods: As part of a 5-year follow-up of the Action on Secondary Prevention Interventions and Rehabilitation in Stroke (ASPIRE-S) cohort of stroke survivors, family members completed a self-report questionnaire. Symptoms of anxiety and depression were assessed using the HADS-A and CES-D. Cognitive decline in stroke survivors was assessed from the caregiver’s perspective using the IQCODE, with cognitive performance assessed by the MoCA. Data were analyzed using logistic regression models.

Results: 78 family members participated; 25.5% exhibited depressive symptoms, 19.4% had symptoms of anxiety. Eleven stroke survivors (16.7%) had evidence of cognitive decline according to both the IQCODE and MoCA. Family members of stroke survivors with cognitive decline were significantly more likely to report symptoms of depression [age-adjusted OR (95% CI): 5.94 (1.14, 30.89)] or anxiety [age-adjusted OR (95% CI): 5.64 (1.24, 25.54)] than family members of stroke survivors without cognitive decline.

Conclusions: One-fifth of family caregivers exhibited symptoms of anxiety and one-quarter symptoms of depression at 5 years post-stroke. Stroke survivor cognitive decline was significantly associated with both depressive and anxious symptoms of family caregivers. Family members play a key role in the care and rehabilitation of stroke patients; enhancing their psychological wellbeing and identifying unmet needs are essential to improving outcomes for stroke survivors and families.     

Addressing organizational barriers to continuity of care in the Danish mental health system – a comparative analysis of 14 national intervention projects

Background: Continuity of mental health care is central to improve the conditions of people with enduring mental disorders. In Denmark, several government-funded projects on the improvement of continuity of mental health care have been initiated since 2009.

Aim: The aim of this study was to investigate how national intervention projects on continuity of mental health care have addressed major barriers for continuity of care and extract general learning points from the projects on the improvement of continuity of care.

Method: The study was designed as a thematic document analysis of external evaluations of 14 major national projects on the improvement of continuity of routine mental health care from 2009 to 2017. The data material was processed through thematic coding and comparative analysis.

Results: The analysis was organized around four main barriers for continuity: Lack of models for collaboration, different professional cultures and methods, lack of channels of communication, and intersectoral differences in management, economy, and legislation. The first three barriers were addressed in a predominant part of the projects through development of collaborative models, common tools and communication systems. The latter structural barrier was not addressed in any of the projects.

Conclusion: There is an ongoing need to address barriers for continuity of mental health care. So far, there has been a much larger focus on organizational, cultural and communicational aspects of continuity than on structural aspects. The study calls for an increased focus on how changes in existing managerial, economic and legislative structures can improve continuity of care.     

Psychiatric diagnosis in primary care patients with increased depressive symptoms

Background: Screening of depression has been recommended in primary care and Beck’s 21-item Depression Inventory (BDI-21) is a commonly used tool for screening. Depression has been shown to be frequently accompanied by comorbidities.

Aims: This study aimed to analyze the characteristics, psychiatric diagnoses, and psychiatric comorbidity of primary care patients who have been screened for depression and referred to a depression nurse.

Methods: The study subjects were primary care patients aged ≥ 35 years with depressive symptoms (BDI-21?>?9). Their psychiatric diagnosis were based on a diagnostic interview (Mini-International Neuropsychiatric Interview; M.I.N.I.) conducted by a trained study nurse.

Results: Of the 705 study subjects, 617 (87.5%) had at least one and 66.1% had at least two psychiatric diagnoses. The most common diagnosis was depression (63.4%). The next most common diagnoses were generalized anxiety disorder (GAD) (48.1%) and panic disorder (22.8%). Only 8.8% of the study subjects had depression without other psychiatric disorders. Ten percent of the subjects had both depression and a generalized anxiety disorder (GAD). Also other psychiatric comorbidities were common. Age was inversely associated with the psychiatric diagnosis in the M.I.N.I.

Conclusions: This study suggests that most of the primary care patients with increased depressive symptoms have a psychiatric disorder. Although depression is the most common diagnosis, there are several other concurrent psychiatric comorbidities. Therefore, diagnostic assessment of primary care patients with a screening score over 9 in the BDI-21 should be reconsidered.     

How to address the needs of non-responders to REACH VA: a qualitative analysis

Objective: This study used qualitative methods to understand how to further alleviate symptoms of depression and caregiver burden and address the needs of non-responders following a course of Resources for Enhancing Alzheimer’s Caregiver Health in VA (REACH VA).

Methods: Semi-structured interviews with caregivers and interventionists post-treatment were coded for themes related to ways to address the needs of non-responder caregivers.

Results: The following suggestions recurred among non-responder caregivers and interventionists: (1) tailor skills and psychoeducation material to caregiver’s needs; (2) provide greater overall support within the realm of caregiving; (3) explore and process caregiver’s emotions around caregiving experience and grief; (4) address interpersonal difficulties and barriers to asking for help; (5) spend more time practicing skills to aid in implementing them at home.

Conclusions: For many non-responders, a longer-term treatment targeting caregivers’ emotional processing, interpersonal skills, social connection, acquisition and implementation of skills is indicated.     

Well-being in elderly long-term care residents with chronic mental disorder: a systematic review

Objectives: One of the most important objectives of care for older long-term care residents with chronic mental disorders is to facilitate well-being. This review provides an overview of research literature on well-being in this population.

Method: A systematic review was conducted using Pubmed, PsycINFO and PsycARTICLES for all studies up until March 2016. Three reviewers independently assessed the eligibility of the publications and made a selection.

Results: From a total of 720 unique search results, ten studies were deemed eligible. Specialized care, specifically the presence of mental health-workers was associated with increased well-being outcomes. Perceived amount of personal freedom was also related to higher well-being, whereas stigmatization and depression were related to reduced well-being. Size of residence, single or group-accommodation or moving to another locationdid not, however, seem to have an impact on well-being.

Conclusion: Specialized care, aimed at psychiatric disorders and extra attention for depressed residents are useful tools to promote well-being. Additionally, themes like personal freedom and stigmatization should be taken into consideration in the care for older long-term care residents with chronic mental disorder. However, as very little research has been conducted on this topic, conclusions should be interpreted with caution. More research is highly desirable.     

Pharmacogenetics and levodopa induced motor complications

Aim: L-dopa remains the most effective symptomatic therapy for Parkinson's disease (PD) but unfortunately, its chronic use is often associated with motor complications. This review highlights the importance of pharmacogenetics in an individualised PD therapeutic approach.

Material and Methods: review of the literature was done.

Results: PD patients show remarkable heterogeneity in their response to L-dopa and this profound interindividual heterogeneity suggests that there is a genetic predisposition.

Conclusions: The impact of the genetic makeup of every individual on PD treatment appears to be of great importance in order to achieve not only the optimum therapeutic effect, but also with minimal side effects.     

A how-to guide to aphasia services: celebrating Professor Linda Worrall’s contribution to the field

Background: This article recognises Professor Linda Worrall’s contribution to aphasiology and discusses research themes which have grown from her work.

Aims: To review, summarise, and discuss literature relating to four themes which have emerged from the work of Professor Worrall: (1) Research capacity building; (2) Implementation of research evidence in clinical practice; (3) Meaningful outcome measurement; and (4) Improvement of psychological and emotional outcomes.

Main contribution: A review of the literature, with examples of practical applications.

Conclusions: The work of Professor Worrall has greatly influenced the field of aphasia; her legacy is the research capacity she has built in Australia and around the world.     

Mental health care providers talk about their experiences preventing suicide in people with substance use disorders in South Africa: implications for clinical practice

Objective: This study explored mental health care providers’ experiences of preventing suicide in people with substance use disorders and their perceptions of factors related to clinical practice that contributed to these experiences.

Methods: In-depth, semistructured interviews were conducted with 18 mental health care providers working in South Africa. Thematic analysis was used to analyse the data inductively with Atlas.ti software.

Results: Participants described feeling hopeless, helpless, powerless and guilty and needed to debrief from their experiences of preventing suicide. They perceived their experiences to be related to the difficulties of treating substance use disorders, the difficulties of assessing and managing suicide risk and how treating substance use might increase suicide risk.

Conclusions: The ways in which mental health care providers think about suicide and make sense of their experiences affects their perceived abilities to prevent suicide. Educating mental health care providers to transcend the limitations of risk factor approaches to suicide prevention and utilise evidence-based strategies for treating substance use disorders and associated problems, may be important to empower them and make them feel competent in suicide prevention. Empowering people with substance use disorders may help prevent suicide and may require collaboration between mental health care providers and allied professionals.     

Do older adults with Alzheimer's disease engage in estate planning and advance care planning preparation?

Objectives: This study investigated the estate planning and advance care planning (ACP) of older adults diagnosed with Alzheimer's disease (AD) for the presence of (1) a valid will, (2) a durable power of attorney for health care, and (3) a living will.

Method: We analyzed 10,273 adults aged 65 and older from the 2012 Health and Retirement Study (HRS) using multilevel logistic regression.

Results: We found that a diagnosis of AD was significantly associated with the ACP variables. Older adults with AD were more likely to assign a durable power of attorney for health care and have a written living will than older adults without an AD diagnosis. However, we found no significant association between a diagnosis of AD and having a valid will. These findings were robust when adjusting for demographic and socioeconomic variables. Other factors decreased engagement in estate planning and ACP, including lower socioeconomic status, being male, and being a minority.

Conclusion: Our findings suggest that a diagnosis of AD is associated with more engagement in ACP for individuals and their families, but important barriers exist for people with fewer resources.