Self-management interventions for people with intellectual disabilities: A systematic review

ObjectivePeople with intellectual disabilities (ID) often experience difficulties managing their affairs. This study reviewed self-management interventions for people with mild to moderate ID, studying interventions’ effectiveness and applied behavioural change techniques (BCTs).MethodsA systematic literature search was conducted in PubMed, PsychINFO, Web of Science, Embase, Emcare, Cochrane, and ProQuest. Data were extracted on study, intervention, and participant characteristics, and results.ResultsOf the 681 studies retrieved, 36 met the inclusion criteria. Most studies used case study designs and small samples. There were eight randomised controlled trials and one non-randomised study. Studies were mostly of moderate quality (Mixed Methods Appraisal Tool). Twenty-two interventions targeted a singular practical skill for a specific context. In allinterventions, the provider applied several BCTs; in 13 studies participants were also trained to apply BCTs themselves. In all studies, improvements in self-management were reported, which mostly maintained over time (n = 20). If measured, generalisation to other settings was also found.ConclusionsFuture studies should aim for a higher methodological quality and couldconsider targeting more generic self-management and a wider application of BCTs by people with ID themselves.Practice implicationsThe findings suggest that training can promote self-management in people with ID.     

Attitudes of nursing staff towards involvement in medical end-of-life decisions: A national survey study

Objectives

To investigate nursing staff attitudes towards involvement and role in end-of-life decisions (ELDs) and the relationships with sociodemographic and work-related characteristics.

Methods

Survey study among nationally representative Dutch research sample consisting of care professionals. Nursing staff working in hospitals, home care, nursing homes or homes for the elderly were sent ELD-questionnaire.

Results

Response: 66% (n = 587). Most respondents had been involved in ELD. Three quarters wanted to be involved in whole ELD process; 58% agreed that decisions to withhold/withdraw treatment ought to be discussed with the nurses involved; 64% believed patients would talk rather to nurses than physicians; 72% thought physicians are usually prepared to listen to nurses’ opinions. Hospital and highly educated nursing staff indicated relatively more often that they want to be involved in ELD.

Conclusion

Majority of nursing staff want to be involved in ELD. Work setting and educational level are determining factors in attitudes of nursing staff regarding involvement in ELD.

Practice implications

Awareness on the important role nurses have and want to have in ELD should be raised, and taken into account in trainings on end-of-life care for nurses and physicians and development of guidelines for communication about ELD between patients, nursing staff and physicians.     

Priority-setting and feasibility of health information exchange for primary care patients with intellectual disabilities: A modified Delphi study

ObjectiveAccurate health information exchange (HIE) is fragile in healthcare for patients with intellectual disabilities (ID), threatening the health outcomes for this patient group. In conjunction with a group of experts, we aimed to identify the principal actions and organisational factors facilitating HIE for primary care patients with ID and to assess their perceived feasibility in daily practice.MethodsWe conducted a two-round modified Delphi study with Dutch GPs (n = 22), support workers (n = 18) and ID physicians (n = 20). In an extensive set of 61 items covering actions and organisational factors, experts ranked items in order of importance and rated their feasibility.ResultsAgreement was reached on the importance of 22 actions and eight organisational factors, of which 82% were deemed (very) feasible in daily practice. Experts stressed the importance of listed actions and factors being implemented simultaneously and remarked that further priority should be based on contextual demands.Conclusion and practice implicationsThis study indicates the principal actions and organisational factors for HIE regarding primary care patients with ID. The set can be used as a practical guide to optimise inter-professional cooperation and arrange the distribution of HIE roles and responsibilities in relation to this patient group.     

Using virtual reality to provide health care information to people with intellectual disabilities: acceptability, usability, and potential utility

Background

People with intellectual disabilities have poor access to health care, which may be further compromised by a lack of accessible health information. To be effective, health information must be easily understood and remembered. People with intellectual disabilities learn better from multimodal information sources, and virtual reality offers a 3-dimensional (3D) computer-generated environment that can be used for providing information and learning. To date, research into virtual reality experiences for people with intellectual disabilities has been limited to skill-based training and leisure opportunities within the young to mid age ranges.

Objective

This study assessed the acceptability, usability, and potential utility of a virtual reality experience as a means of providing health care-related information to people with intellectual disabilities. We designed a prototype multimodal experience based on a hospital scenario and situated on an island in the Second Life 3D virtual world. We wanted to know how people of different ages and with varying levels of cognitive function would participate in the customized virtual environment, what they understood from being there, and what they remembered a week later.

Methods

The study drew on qualitative data. We used a participatory research approach that involved working alongside people with intellectual disabilities and their supporters in a community setting. Cognitive function was assessed, using the Matrix Analogies Test and the British Picture Vocabulary Scale, to describe the sample. Participants, supported by facilitators, were video recorded accessing and engaging with the virtual environment. We assessed recall 1 week later, using a specialized interview technique. Data were downloaded into NVivo 8 and analyzed using the framework analysis technique.

Results

Study participants were 20 people aged between 20 and 80 years with mild to severe intellectual disabilities. All participants were able to access the environment and voluntarily stayed there for between 23 and 57 minutes. With facilitator support, all participants moved the avatar themselves. Participants engaged with the scenario as if they were actually there, indicating cognitive presence. Some referred back to previous medical experiences, indicating the potential for experiential knowledge to become the foundation of new learning and retention of knowledge. When interviewed, all participants remembered some aspects of the environment.

Conclusions

A sample of adults with intellectual disabilities of all ages, and with varying levels of cognitive function, accessed and enjoyed a virtual-world environment that drew on a health care-related scenario, and remembered aspects of it a week later. The small sample size limits generalizability of findings, but the potential shown for experiential learning to aid retention of knowledge on which consent is based appears promising. Successfully delivering health care-related information in a non-National Health Service setting indicates potential for delivery in institutional, community, or home settings, thereby widening access to the information.     

Comparison of end-of-life care for older people living at home and in residential homes: a mortality follow-back study among GPs in the Netherlands

Background

The proportion of older people is increasing, therefore their place of residence and place of care at the end of life are becoming increasingly important.

Aim

To compare aspects of end-of-life care among older people in residential homes and home settings in the Netherlands.

Design and setting

Nationwide representative mortality follow-back study among GPs in the Netherlands.

Method

The study included patients aged ≥65 years who died non-suddenly, whose longest place of residence in their last year of life was at home or in a residential home (n = 498). Differences were analysed using Pearson’s χ² test, Mann-Whitney U tests, and multivariate logistic regression.

Results

Controlling for the differences between the populations in home settings and residential homes, no differences were found in treatment goals, communication about end-of-life care, or use of specialised palliative care between the two settings. However, people living in a residential home were more likely to have received palliative care from a GP than people living at home (OR 2.84, 95% confidence interval [CI] = 1.41 to 5.07). In residential homes, people more often experienced no transfer between care settings (OR 2.76, 95% CI = 1.35 to 5.63) and no hospitalisations (OR 2.2, 95% CI = 1.04 to 4.67) in the last 3 months of life, and died in hospital less often (OR 0.78, 95% CI = 0.63 to 0.97) than those people living at home.

Conclusion

Despite similar treatment goals, care in residential homes seems more successful in avoiding transfers and hospitalisation at the end of life. Especially since older people are encouraged to stay at home longer, measures should be taken to ensure they are not at higher risk of transfers and hospitalisations in this setting.     

Information needs about palliative care and euthanasia: A survey of patients in different phases of their cancer trajectory

Objective

We assessed information provision and information needs about illness course, treatments, palliative care and euthanasia in cancer patients.

Caring for people living with,and beyond,cancer: an online survey of GPs in England

Background

Increasing numbers of people are living with, and beyond, cancer. They are at risk of long-term morbidity and premature mortality due to the consequences of their disease and its treatment. Primary care can contribute to providing ongoing care.

Aim

To determine the current practice and views of GPs in England regarding cancer survivorship care.

Design and setting

Online survey of a sample of 500 GPs, stratified by NHS region in England.

Method

The survey included questions adapted from prior surveys assessing physician knowledge and attitudes regarding care of patients with cancer.

Results

In total, 500 GPs responded; approximately half reported often providing care to people living beyond cancer for treatment-related side effects (51%), psychological symptoms (65%), and lifestyle advice (55%). Only 29% felt very confident managing treatment-related side effects compared with 46% and 65% for psychological symptoms and lifestyle advice respectively. Half reported usually receiving cancer treatment summaries and survivorship care plans but most of the sample felt these would improve their ability to provide care (76%). Only 53% were convinced of the usefulness of cancer care reviews. Although most felt that primary and specialist care should share responsibility for managing bone (81%) and cardiovascular (77%) health consequences, fewer than half reported often taking previous history of cancer or cancer treatment into consideration when assessing bone health; only one-fifth did this in relation to cardiovascular health. Most responders were interested in receiving education to improve their knowledge and expertise.

Conclusion

GPs have a potentially important role to play in caring for people following cancer treatment. This study has highlighted areas where further support and education are needed to enable GPs to optimise their role in cancer survivorship care.     

Perceived problems with involvement in decision making about breast cancer treatment and care: A cross-sectional study

ObjectiveTo examine perceived problems with involvement in medical decision making among people with breast cancer from various phases of the cancer care trajectory.MethodsBreast cancer outpatients (n = 663) from 13 treatment centres completed a survey of perceived involvement in treatment and care decisions in the last month, psychological distress, demographic and clinical factors. A subsample (n = 98) from three centres completed a follow-up survey on preferred and perceived treatment decision making roles.ResultsOverall, 112 (17 %) of 663 respondents from 13 oncology centres had experienced problems with involvement in decision making about their treatment and care in the last month, and of these, 36 (32 %) reported an unmet need for help with this problem. Elevated psychological distress was associated with 5.7 times the odds of reporting this problem and 6.6 times the odds of reporting this unmet need in the last month. Among the follow-up subsample (n = 98), 39% (n = 38) reported discordance between preferred and perceived role in a major treatment decision. Psychological distress was not associated with this outcome.ConclusionPsychological distress was significantly associated with recently experiencing problems with involvement in treatment and care decisions, but not with misalignment of preferred and perceived roles in prior major treatment decisions.Practice implicationsThere is a need to maintain support for patient involvement in healthcare decisions across the cancer care continuum.     

A quasi-experimental evaluation of advance care planning improves consistency between elderly individuals and their surrogates regarding end-of-life care preferences: Development and application of a decision aid with cartoon pictures

ObjectiveThis study sought to develop a decision aid with cartoon pictures and evaluate its effectiveness in increasing consistency between elderly individuals and their surrogates regarding end-of-life care.MethodsA pre-post quasi-experimental design was adopted using the Life Support Preferences Questionnaire. The intervention had two components: (1) increasing participants’ knowledge of medical treatments related to end-of-life care, and (2) sharing their end-of-life wishes. The experimental group received an intervention, whereas the control group received usual care.ResultsA total of 110 participants in 55 pairs of elderly individuals with average aged 86.4 and their surrogates (27 in the experimental group, 28 in the control group) were recruited from a veterans hospital in northern Taiwan. Nearly 90 % of elderly individuals were male. The multiple linear regression showed that the inconsistent gap between elderly individuals and their surrogates in the experimental group decreased 12 points than the control group after controlling the covariances (B = ?12.116, p = 0.032).ConclusionThe intervention improved the consistency between elderly individuals and their surrogates regarding end-of-life care.Practice implicationsA decision aid with cartoon pictures may support the discussion of end-of-life care in older Asian populations.     

Beginning with high value care in mind: A scoping review and toolkit to support the content,delivery, measurement,and sustainment of high value care

Objective

To create a shared vision for the content, delivery, measurement, and sustainment of patient-centered high value care.

PTSD and its treatment in people with intellectual disabilities: A review of the literature

Although there is evidence to suggest that people with intellectual disabilities (ID) are likely to suffer from Post-Traumatic Stress Disorder (PTSD), reviews of the evidence base, and the potential consequences of this contention are absent. The purpose of this article is to present a comprehensive account of the literature on prevalence, assessment, and treatment of PTSD in people with ID. Some support was found for the notion that people with ID have a predisposition to the development of PTSD. Differences in comparison with the general population may consist of the expression of symptoms, and the interpretation of distressing experiences, as the manifestation of possible PTSD seems to vary with the level of ID. Since reliable and valid instruments for assessing PTSD in this population are completely lacking, there are no prevalence data on PTSD among people with ID. Nine articles involve treatment of PTSD in people with ID. Interventions reported involve those aimed to establish environmental change, the use of medication and psychological treatments (i.e., cognitive behavioral therapy, EMDR and psychodynamic based treatments). Case reports suggest positive treatment effects for various treatment methods. Development of diagnostic instruments for assessment of PTSD symptomatology in this population is required, as it could facilitate further research on its prevalence and treatment.     

The place of general practitioner in the management of patients with rare disease and intellectual disability: A qualitative study

The management of patients with rare diseases (RD) presents many challenges including diagnosis, coordination of care, and orientation in the health system. For these patients, the general practitioner (GP) is not always the referring physician. The aim of this study was to determine the place of the GP in management of patients with RD. We used a qualitative study by case-study. From March to October 2020, semi-structured interviews were conducted by telephone with the families of adult patients with RD and intellectual disability, and with the health professionals involved in their management. Patients were recruited through RD reference centres, patient associations or GPs. The interviews were transcribed and analysed by two independent investigators. A grounded theory-based analysis was performed. Eight case studies were conducted with 20 participants. Our results highlighted the trajectory of the patients through the development of the career of the primary informal caregiver. The caregivers developed skills required for the management of the care recipient. Within this trajectory, the GP found his place depended on the skills he could provide, their interest in the disease, the skills developed by the caregiver, and the caregiver/care recipient needs. The GP was mostly consulted for routine care and administrative procedures, but when a trusting relationship was established, they also accompanied the patient and their family by providing appropriate medical, social or psychological support. The GP will be all the more a privileged actor in the care process that he will be involved in the coordination of all other actors, professional as non-professionals.     

Information provision as evaluated by people with cancer and bereaved relatives: A cross-sectional survey of 34 specialist palliative care teams

Objective

To explore how individuals with cancer and bereaved relatives evaluate information provision by specialist palliative care services (PCSs).

Motivations,aims and communication around advance directives: A mixed-methods study into the perspective of their owners and the influence of a current illness

Objective

What are motivations of owners of an advance directive (AD) to draft an AD, what do they aim for with their AD and do they communicate about their AD?

Methods

Written questionnaires were sent to a cohort of people owning different types of ADs (n = 5768). A purposive sample of people suffering from an illness was selected from the cohort for an in-depth interview (n = 29).

Results

About half of our population had no direct motivation to draft their AD. Most mentioned motivation for the other half was an illness of a family member or friend. Many different and specific aims for drafting an AD were mentioned. An often mentioned more general aim in people with different ADs was to prevent unnecessary lengthening of life or treatment (14–16%). Most respondents communicated about having an AD with close-ones (63–88%) and with their GP (65–79%). In the interviews people gave vivid examples of experiences of what they hoped to prevent at the end of life. Some mentioned difficulties foreseeing the future and gave examples of response shift.

Conclusion

ADs can give directions to caregivers about what people want at the end of life.

Practice implications

ADs have to be discussed in detail by their owners and caregivers, since owners often have specific aims with their AD.     

Work organisation,work environment and the use of medical equipment: A survey study of the impact on quality and safety

In a study of hospital staff's perceived quality of care and worry, related to the use of medical equipment, a systems approach was used. This included training and user aspects on the equipment, environmental ergonomics, work organisation and psychosocial work conditions. In a survey study, 543 hospital staff members from seven departments with various degrees of equipment utilisation participated. By means of factor analysis, factors which were important to perceived quality of care and worry were determined. Adaptation of equipment and environment and training on the use of equipment were shown to be important. However, several organisational and psychosocial factors turned out to have a still greater impact. In the assessment of healthcare technologies which include medical equipment a holistic systems approach is therefore advocated.     

The impact of a Critical Care Information System (CCIS) on time spent charting and in direct patient care by staff in the ICU: A review of the literature

Purpose

The introduction of a Critical Care Information System (CCIS) into an intensive care unit (ICU) is purported to reduce the time health care providers (HCP) spend on documentation and increase the time available for direct patient care. However, there is a paucity of rigorous empirical research that has investigated these assertions. Moreover, those studies that have sought to elucidate the relationship between the introduction of a CCIS and the time spent by staff on in/direct patient care activities have published contradictory findings. The objective of this literature review is to establish the impact of a CCIS on time spent documenting and in direct patient care by staff in the ICU.

Methods

Five electronic databases were searched including PubMed Central, EMBASE, CINAHL, IEEE Xplore, and the Cochrane Database of Systematic Reviews. Reference lists of all published papers were hand searched, and citations reviewed to identify extra papers. We included studies that were empirical articles, published in English, and provided original data on the impact of a CCIS on time spent documenting and in direct patient care by staff in the ICU.

Results

In total, 12 articles met the inclusion criteria. Workflow analysis (66%) and time-and-motion analysis (25%) were the most common forms of data collection. Three (25%) studies found an increase in time spent charting, five (42%) found no difference, and four (33%) studies reported a decrease. Results on the impact of a CCIS on direct patient care were similarly inconclusive.

Conclusions

Due to the discrepant findings and several key methodological issues, the impact of a CCIS on time spent charting and in direct patient care remains unclear. This review highlights the need for an increase in rigorous empirical research in this area and provides recommendations for the design and implementation of future studies.     

Psychotherapy alone versus collaborative psychotherapy and psychiatric care in the treatment of depression and anxiety in patients with cancer: A naturalistic,observational study

Objective

At present, there is a paucity of naturalistic studies directly comparing the effectiveness of psychotherapy alone versus collaborative psychotherapy and psychiatric care in the management of depression and anxiety in patients with cancer. This study tested the hypothesis that collaborative psychiatric and psychological care would lead to greater reductions in depression and anxiety symptoms in patients with cancer compared with psychotherapy alone.

Methods

We analyzed treatment outcomes of 433 adult patients with cancer, of which 252 patients received psychotherapy alone and 181 patients received collaborative psychotherapy and psychiatric care. Longitudinal changes in depressive (i.e., PHQ-9) and anxiety symptoms (GAD-7) were examined between groups using latent growth curve modeling.

Results

After controlling for treatment length and psychotherapy provider effects, results indicated collaborative care was more effective than psychotherapy alone for depressive symptoms (γ₁₂ = −0.13, p = 0.037). The simple slope for collaborative care was −0.25 (p = 0.022) and the simple slope for psychotherapy alone was −0.13 (p = 0.006), suggesting collaborative care resulted in greater reductions in depressive symptoms compared with psychotherapy alone. In contrast, there were no significant differences between psychotherapy alone and collaborative psychotherapy and psychiatric care in reducing anxiety symptoms (γ₁₂ = −0.08, p = 0.158).

Conclusions

Collaborative psychotherapy and psychiatric care may individually address unique aspects of mental health conditions in patients with cancer, namely depressive symptoms. Mental healthcare efforts may benefit from implementing collaborative care models where patients receive psychiatric services and psychotherapy to effectively address depressive symptoms in the treatment of this patient population.     

Effectiveness of the ‘availability,current issues and anticipation’ (ACA) training programme for general practice trainees on communication with palliative care patients: A controlled trial

Objective

This study aimed to evaluate the effectiveness of a new palliative care ‘availability, current issues and anticipation’ (ACA) training programme to improve communication skills of general practice trainees (GPTs).

Methods

In a controlled trial among third-year GPTs, we videotaped one 20-min consultation between each GPT and a simulated palliative care patient at baseline and at six months follow-up. We measured the number of issues discussed and the quality of communication skills and analysed between-group differences using linear mixed models and logistic regression.

Results

Fifty-four GPTs were assigned to the intervention and 64 to the control group. We found no effect of the programme on the number of issues discussed or on the quality of GPT communicative behaviour. GPTs infrequently addressed ‘spiritual/existential issues’ and ‘unfinished business’. In a selection of the consultations, simulated patients brought up more issues than the GPTs did.

Conclusion

The ACA training programme was not effective in the way it was carried out and evaluated in this trial.

Practice implications

The ACA programme should focus on the issues that scored low in this trial. Future research on GPT–patient communication in palliative care should consider using real patients in a series of consultations to evaluate effectiveness.