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Neurology Feb 2023In medical school, students learn to view the world through a biomedical lens. While necessary clinically, this lens can be impersonal. For example, the mental status...
In medical school, students learn to view the world through a biomedical lens. While necessary clinically, this lens can be impersonal. For example, the mental status examination (MSE) evaluates cognitive function through a brief assessment of alertness and orientation to person, place, time, and situation. While clinically useful, the MSE often neglects to capture a person's individuality. Visiting my grandmother who has Alzheimer disease highlighted this tension. I juxtaposed the impersonality of our MSE orientation scale with my grandmother's lived experiences. My grandmother is identified using a pseudonym. Informed consent was obtained from her health care power of attorney and family.Birds twitter and chirp as they flit into the shade,the covered patio a respite from the morning's heat.I sit with Joanna and show her a painting:an apple, red peppers, a garlic clove, and a grapefruitrest on a white napkin.Produce so vibrant the napkin is stainedwith their vivid reflections.The wrinkles around her eyes deepen as she squints at the picture.She always liked to see my artwork.Bright colors illuminate the lines of confusion on her face.Where did you get all this food?We're rationing for the war to stop Hitler.I have evaluated dementia:limited treatment options, behavioral interventions.Cognitive changes alterorientation to self,place, time, situation.Joanna and I sit on the memory care patio.The birdfeeder dances in the humid summer air.I've shared my artwork with Grandma Jofrom crayons' waxy scrawlto crisp acrylic colors.Today a t-shirt replaces my white coat.The war is over, grandma.The produce is from a grocery store.I redirect with another painting.This is a bridge in a park-She smiles: it's New York City, I miss going there.In the middle of Central Park,a cement bridge in a grassy parkspans a wide, still pond.Today, the colors of the bridge,reflected on the water,spark a glimmer of my grandmother.This time she knows the memory is in the past,as she tells me about New York in the Forties.With the beating of sparrow wings,the moment of clarity endsas past and present are blended again.When the sun sinks, my visit will fade.I clutch what happenedoutside, away from the clinical setting.What we cannot quantifywith A&O x1: oriented to self.
Topics: Humans; Female; Alzheimer Disease; Emotions; Brain; New York City
PubMed: 36443014
DOI: 10.1212/WNL.0000000000201602 -
Journal of the American Geriatrics... Feb 2021To characterize current practices, barriers, and facilitators to assessing and addressing family caregivers' needs and risks in primary care.
OBJECTIVES
To characterize current practices, barriers, and facilitators to assessing and addressing family caregivers' needs and risks in primary care.
DESIGN
Cross-sectional, national mail-based survey.
SETTING
American Medical Association Masterfile database.
PARTICIPANTS
U.S. primary care physicians (N = 106), including general internists (n = 44) and geriatricians (n = 62).
MEASUREMENTS
Approaches to assessing and addressing family caregivers' needs and risks; barriers and facilitators to conducting caregiver assessments.
RESULTS
Few respondents reported conducting a formal caregiver assessment using a standardized instrument in the past year (10.5%). Informal, unstructured discussions about caregivers' needs and risks were common and encompassed a range of issues, most frequently caregivers' management of patients' safety (41.0%), ability to provide assistance (40.0%), and need for support (40.0%). To address caregiver needs, most respondents endorsed referring patients to services (e.g., adult day care, home care) (69.8%), assessing the appropriateness of the patient's living situation (67.9%), and referring caregivers to community agencies (63.2%). Lack of time was the most frequently cited barrier to assessing caregivers' needs (81.1%). The most commonly endorsed facilitators were access to better referral options (67.0%) and easier referral mechanisms (65.1%). Practice patterns, barriers, and facilitators to caregiver assessment did not differ by physician type.
CONCLUSIONS
Primary care physicians use informal, unstructured discussions rather than standardized instruments to assess caregivers' needs and risks. There is heterogeneity in the topics discussed and types of referrals made. Findings indicate the lack of translation of caregiver assessment tools from research to practice.
Topics: Aged; Caregivers; Cross-Sectional Studies; Female; Humans; Male; Mental Health; Middle Aged; Needs Assessment; Patient Care; Primary Health Care; Referral and Consultation; Respite Care; Risk Assessment; Sleep Wake Disorders; Social Conditions; Social Support; Stress, Psychological; United States
PubMed: 33217776
DOI: 10.1111/jgs.16945 -
BMC Geriatrics Mar 2023There is some evidence to suggest that animal-assisted interventions can have beneficial impact for residents in long-term care, but the focus of the evidence has... (Meta-Analysis)
Meta-Analysis
BACKGROUND
There is some evidence to suggest that animal-assisted interventions can have beneficial impact for residents in long-term care, but the focus of the evidence has largely been on behavioural and psychosocial measured outcomes. Animals, either as companion animals or in the form of pet/animal-assisted therapy, may provide benefits in the form of social contact, as well as opportunities for sensory experiences and meaningful engagement not picked up by outcome tools. This review aimed to create a state-of-knowledge synthesis, bringing together qualitative and quantitative findings, on the impact of animal-human interaction on care home residents and care home staff.
METHODS
Fourteen databases were searched from inception to July 2020. Forward and backward citation chasing of included articles was conducted. Screening was undertaken independently by a team of reviewers. Thematic synthesis and meta-analysis were used to synthesise the qualitative and quantitative data.
RESULTS
Thirty-four studies, published in 40 articles (20 qualitative and 20 quantitative) were included. Five themes relating to resident wellbeing were identified in the qualitative evidence synthesis. These were animals as 'living beings', reminiscence and storytelling, caring (as 'doing' and 'feeling'), respite (from loneliness, institutionalisation, and illness), and sensory engagement. A sixth theme related to staff perceptions and wellbeing, and a seventh to animal health and wellbeing. Maintaining identity was identified as an overarching theme. The majority of randomised trials had small sample sizes and were rated as low quality, mostly showing no evidence of beneficial effect. There was, however, limited evidence of a positive effect of pet/animal interaction on outcomes of loneliness, anxiety and depression, supporting the themes of respite and sensory engagement.
CONCLUSIONS
The presence of animals can significantly impact the health and wellbeing of some care home residents. Residents had meaningful relationships with animals and derived pleasure and comfort from them. Interacting with animals offered residents a way to maintain a sense of self in the care homes, and with support, residents with dementia could also express their identities. Facilitating residents to interact with animals as part of person-centred care may also help residents to feel 'at home' in the care home.
TRIAL REGISTRATION
PROSPERO registration no: CRD42017058201.
Topics: Animals; Humans; Animal Assisted Therapy; Long-Term Care
PubMed: 36964508
DOI: 10.1186/s12877-023-03834-0 -
BMJ (Clinical Research Ed.) Oct 1996The aim of community care is to enable people with various types of disability to live in their own homes, rather than in institutions. This involves the provision of... (Review)
Review
The aim of community care is to enable people with various types of disability to live in their own homes, rather than in institutions. This involves the provision of support and services at home by various agencies. After a critical report in 1986 identified problems with coordination and flexibility of community care services, the white paper Caring for People (1989) stated the government's aim to provide a "needs led," responsive range of services, promoting maximum independence of those wishing to live at home rather than enter institutional care. New arrangements were introduced in 1993, involving a formal assessment procedure and the production of a personalized care plan for each individual, incorporating services provided by private and voluntary agencies as well as by social services departments. This article describes the components of community care services supplied by local social services authorities, including housing adaptations, equipment, telephones and alarms, home care, meals, and respite care.
Topics: Aged; Community Health Services; Disabled Persons; Emergency Medical Services; Health Services for the Aged; Home Care Services; Homes for the Aged; Housing; Humans; Respite Care; Social Security; Social Work; Telephone; United Kingdom
PubMed: 8870580
DOI: 10.1136/bmj.313.7061.869 -
Indian Journal of Palliative Care 2022The concept of total pain encompasses a person's physical, psychological, social, spiritual, and practical struggles. Effective pain and symptom management are the core...
INTRODUCTION
The concept of total pain encompasses a person's physical, psychological, social, spiritual, and practical struggles. Effective pain and symptom management are the core elements of palliative care which aims at reducing suffering and improving quality of life (QOL) throughout the course of illness and need to be addressed with multidisciplinary coordinated approach in a timely manner. It may be challenging for palliative care providers to address all these distressing issues during short out-patient consultations. Hence, Respite Palliative Care Unit (RPCU) is an appropriate place to provide holistic patient care.
CASE DESCRIPTION
A 59-year-old widow, from Muslim community, was following up with Palliative Medicine out-patient department for management of progressively increasing chest pain with frequent exacerbations. She remained unsatisfied with the pain management and reported moderate to severe intensity of pain despite maximal pain management using multimodal approaches. We planned to systematically explore and address the issues leading to uncontrolled pain and distress. The patient was admitted to RPCU for holistic pain management and continuity of care. We explored and addressed the complex psycho-socio-spiritual aspects contributing to the total pain experience to achieve better symptom control and improve her overall well-being.
CONCLUSION
This case report emphasizes the role of RPCU in effective and holistic management of psychosocial, spiritual issues, difficult communication, and advanced care planning. This model of palliative care can be a valuable addition to various health-care set-ups in the developing countries for improvement of patient care.
PubMed: 35673372
DOI: 10.25259/IJPC_14_2021 -
Health Technology Assessment... Apr 2007To review the evidence for different models of community-based respite care for frail older people and their carers, where the participant group included older people... (Review)
Review
OBJECTIVES
To review the evidence for different models of community-based respite care for frail older people and their carers, where the participant group included older people with frailty, disability, cancer or dementia. Where data permitted, subgroups of carers and care recipients, for whom respite care is particularly effective or cost-effective, were to be identified.
DATA SOURCES
Major databases were searched from 1980 to March 2005. Ongoing and recently completed research databases were searched in July 2005.
REVIEW METHODS
Data from relevant studies were extracted and quality assessed. The possible effects of study quality on the effectiveness data and review findings were discussed. Where sufficient clinically and statistically similar data were available, data were pooled using appropriate statistical techniques.
RESULTS
Twenty-two primary studies were included. Most of the evidence came from North America, with a minority of effectiveness and economic studies based in the UK. Types of service studied included day care, host family, in-home, institutional and video respite. Effectiveness evidence suggests that the consequences of respite upon carers and care recipients are generally small, with better controlled studies finding modest benefits only for certain subgroups. However, many studies report high levels of carer satisfaction. No reliable evidence was found that respite can delay entry to residential care or that respite adversely affects care recipients. Randomisation validity in the included randomised studies was sometimes unclear. Studies reported many different outcome measures, and all of the quasi-experimental and uncontrolled studies had methodological weaknesses. The descriptions of the studies did not provide sufficient detail of the methods of data collection or analysis, and the studies failed to describe adequately the groups of study participants. In some studies, only evidence to support respite care services was presented, rather than a balanced view of the services. Only five economic evaluations of respite care services were found, all of which compared day care with usual care and only one study was undertaken in the UK. Day care tended to be associated with higher costs and either similar or a slight increase in benefits, relative to usual care. The economic evaluations were based on two randomised and three quasi-experimental studies, all of which were included in the effectiveness analysis. The majority of studies assessed health and social service use and cost, but inadequate reporting limits the potential for exploring applicability to the UK setting. No study included generic health-related quality of life measures, making cost-effectiveness comparisons with other healthcare programmes difficult. One study used sensitivity analysis to explore the robustness of the findings.
CONCLUSIONS
The literature review provides some evidence that respite for carers of frail elderly people may have a small positive effect upon carers in terms of burden and mental or physical health. Carers were generally very satisfied with respite. No reliable evidence was found that respite either benefits or adversely affects care recipients, or that it delays entry to residential care. Economic evidence suggests that day care is at least as costly as usual care. Pilot studies are needed to inform full-scale studies of respite in the UK.
Topics: Aged, 80 and over; Caregivers; Cost-Benefit Analysis; Female; Frail Elderly; Health Policy; Health Services for the Aged; Humans; Male; Middle Aged; Respite Care; United Kingdom
PubMed: 17459263
DOI: 10.3310/hta11150 -
Current Opinion in Psychiatry Mar 2015Developmental disabilities are increasingly recognized, and remarkable progress is being made on the genetic and neurobiological underpinnings of many disorders. Yet,... (Review)
Review
PURPOSE OF REVIEW
Developmental disabilities are increasingly recognized, and remarkable progress is being made on the genetic and neurobiological underpinnings of many disorders. Yet, only a tiny percentage of the disability literature addresses families of children with disabilities. A review of recently published family studies reveals salient trends and gaps.
RECENT FINDINGS
Consistent with previous work, high levels of parent stress, illness, anxiety, and depression are apparent. Studies in the USA focused on parents of children with autism; in contrast, studies on parents of children with intellectual disabilities were almost always conduced abroad. Compared to other disabilities, families of children with psychiatric disorders and genetic syndromes are understudied. The majority of family studies are descriptive, with very few trials or interventions aimed at reducing parental stress. Of these, mindfulness practices and a peer-mentor model of treatment delivery hold much promise for effective stress reduction. Psychoeducational programs and respite care are differentially beneficial.
SUMMARY
A new era of family intervention research is in order. This work can take advantage of many advances in telemedicine, peer-mentor models, smart technology, and biomarkers as indices of change. Benefit could also stem from group interventions with parents who share similar concerns, regardless of their child's diagnostic label.
Topics: Child; Developmental Disabilities; Disabled Children; Family; Humans; Nervous System Diseases; Parents; Siblings
PubMed: 25594421
DOI: 10.1097/YCO.0000000000000129 -
Nursing Mar 2023Nurses provide care in various settings and advocate for vulnerable populations. Recognizing the need for follow-up care after hospitalization and mobilizing necessary...
Nurses provide care in various settings and advocate for vulnerable populations. Recognizing the need for follow-up care after hospitalization and mobilizing necessary resources are part of caring for patients, including those experiencing homelessness. This article discusses how one community coalition assessed gaps in care that might be met by establishing medical respite in the community.
Topics: Humans; Adult; Respite Care; Hospitalization; Ill-Housed Persons
PubMed: 36820696
DOI: 10.1097/01.NURSE.0000918524.41501.98 -
Nursing Open May 2022To identify and synthesize the evidence base regarding children and adolescents' preferences for support when living with a dying parent. (Review)
Review
AIM
To identify and synthesize the evidence base regarding children and adolescents' preferences for support when living with a dying parent.
DESIGN
Integrative literature review study.
METHODS
Searches were conducted in PubMed, CINAHL, PsycINFO, the Cochrane Library, Sociological Abstracts and Scopus, between 1 October 2019 and May 2021. Data were analysed and synthesized using integrative thematic analysis according to the analysis stages specified by Whittermore and Knafl.
RESULTS
Twenty-two articles were identified. Children and adolescents' preferences for support were described through one overarching theme, Striving to achieve control and balance, together with six subthemes; "Involvement in the sick parent's care and treatment"; "Wanting to be with the sick parent but needing respite"; "Information must be continuous and individually adapted"; "emotional and communicative support from parents and family members"; "professional, compassionate and informative support"; and "support in friendships and opportunities to maintain normality."
Topics: Adolescent; Child; Communication; Humans; Parents
PubMed: 35156340
DOI: 10.1002/nop2.1187