Long-term Care Experience Research Articles

Educational outcomes of children from long-term foster care: Does foster parents’ educational attainment matter?

Parental education is a robust predictor of children’s educational outcomes in general population studies, yet little is known about the intergenerational transmission of educational outcomes in alternative family settings such as children growing up in foster care. Using Swedish longitudinal register data on 2.167 children with experience of long-term foster care, this study explores the hypothesized mediating role of foster parents’ educational attainment on foster children’s educational outcomes, here conceptualized as having poor school performance at age 15 and only primary education at age 26. Results from gender-stratified regression analyses suggest that there was an association between foster parental educational attainment and foster children’s educational outcomes but that the educational transmission was weak and inconsistent and differed somewhat between males and females. For males, lower educational attainment in foster parents was associated with poor school performance but was not associated with educational attainment at age 26. The reverse pattern was found among females: the educational gradient was inconsistent for poor school performance but appeared in educational attainment. The results indicate that supported interventions for improving foster children’s educational achievements are needed, even when placements are relatively stable and foster parents have a long formal education.

APPLICATIONS OF QUALITATIVE RESEARCH IN DESCRIBING PCC ENVIRONMENTS: THE STORY BEHIND THE STATISTIC

The goal of PCC is to enhance quality and bring meaning to the lived experience in long-term care. This requires attention to patterns of life, and the creation of residential experiences within the environment. Ten case studies of homes participating in a pay-for-performance PCC program in the Midwest reveals how environmental affordances may be critical in the implementation and sustainability of PCC. Data collected through an in-depth environmental assessment revealed multiple strategies and attributes related to organizational, operational, and environmental practices. This presentation will demonstrate a diagrammatic and empirical comparison of the environments of those early in the process and those who have fully implemented and sustained PCC practices. Specific features will be highlighted and patterns discussed.

TRANSGENDERED OLDER ADULTS IN LONG-TERM CARE: PREPARING FOR THE RISING TIDE

Gender non-conforming older adults are more likely to be without traditional support systems in place; many may need to turn to nursing homes for long-term care (LTC). Little information is available about the experiences of LGBT older adults in these settings. Research questions: What is known about the experiences of transgender (TG) older adults in LTC? What evidence-based recommendations exist to guide LTC administrators in providing quality care to TG residents? What are key future research areas? Method: Systematic review of extant literature, using databases: PubMed, Medline, Psych Info, CINAHL, Academic Search Complete, and ProQuestCentral. Key Results:RQ1) Published research in transgender healthcare consists primarily of case reports, and retrospective and cross-sectional studies; minimal literature specifically on TG individuals; combining LGBT carries risk of minimizing or equating the TG experience to that of gays and lesbians. RQ2) Recommendations: take proactive approach; focus on awareness of relevant laws and regulations; establish non-discriminatory and inclusive environments, policies, and procedures; regular staff training, monitoring, and evaluation. RQ3) Need exists for quantitative and qualitative research into all aspects of the TG experience in LTC. Key areas include: lived experience of the TG in LTC; beliefs, attitudes, values and practices of LTC staff; administrative challenges and responses. Conclusions: Transgender and gender non-conforming individuals frequently experience discrimination in healthcare. Lack of cultural and clinical competence, and discrimination and bias by providers, create barriers to quality healthcare. Healthcare professionals and systems must be proactive in preparing for the inevitable growth of this population in the LTC setting.

UCLA Partners with GAPNA To Improve Alzheimer’s and Dementia Care

UCLA Partners with GAPNA To Improve Alzheimer’s and Dementia Care

What is the relationship between the quality of care experience and quality of life outcomes? Some evidence from long-term home care in England

Quality of care has multiple dimensions, including safety, experience and effectiveness. Understanding the relationship between these dimensions is important for policy and practice, since there may be both synergies and trade-offs that occur when attempting to maximise them. For long-term care effectiveness is understood as care that promotes a good quality of life (QoL). Here we investigate the relationship between care experience and QoL in long-term home care. Data from a cross-sectional survey conducted in 2008/09 were analysed using fractional response regression models to explore the relationship between experience, measured through items capturing perceptions of the care delivery process, and patient-reported QoL-outcomes, measured using ASCOT, controlling for relevant individual characteristics. The analysis included 14,172 people aged 65 and over using home care services from across England. After controlling for the confounding effect of individual characteristics, a ten percentage point increase in overall process quality is found to be associated on average with a 2.13 percentage point increase in ASCOT. Interpersonal aspects of care, such as the responsiveness and caring behaviour of staff, have a stronger relationship with ASCOT than those related to the organisation of care by the provider, such as timekeeping and continuity of care, with a ten percentage point increase in the former associated on average with a 1.9 percentage point increase in ASCOT and a ten percentage point increase in the latter associated on average with a 0.3 percentage point increase in ASCOT. Perceptions of care experience, particularly those related to the interpersonal care aspects, have an important association with QoL-outcomes. Measures of the experience of interpersonal aspects of care may therefore be useful indicators of QoL-outcomes for the routine monitoring of long-term home care services. Although associated, the two dimensions are distinctive and for policymakers there is value in assessing both care experience and QoL-outcomes.

Multidisciplinary long-term care and modern surgical treatment of congenital melanocytic nevi - recommendations by the CMN surgery network.

In recent years, our knowledge of congenital melanocytic nevi (CMN) has greatly expanded. This has led to a paradigm shift. The present article represents a commentary by an interdisciplinary group of physicians from German-speaking countries with extensive experience in long-term care and surgical treatment of children and adults with CMN (CMN surgery network, "Netzwerk Nävuschirurgie", NNC). The authors address aspects such as the indication for treatment as well as treatment planning and implementation under these new premises. Adequate counseling of parents on conservative and/or surgical management requires an interdisciplinary exchange among physicians and individualized planning of the intervention, which frequently involves a multi-stage procedure. Today, the long-term aesthetic outcome is at the center of any therapeutic endeavor, whereas melanoma prevention plays only a minor role. The premise of "removal at any cost" no longer holds. Potential treatment-related adverse effects (hospitalization, wound healing disorders, and others) must be carefully weighed against the prospects of a beneficial outcome. In this context, the use of dermabrasion in particular must be critically evaluated. At a meeting of the NNC in September 2018, its members agreed on a consensus-based position on dermabrasion, stating that the procedure frequently leads to impaired wound healing and cosmetically unfavorable or hypertrophic scarring. Moreover, dermabrasion is considered to be commonly associated with considerable repigmentation that usually occurs a number of years after the procedure. In addition, the NNC members saw no benefit in terms of melanoma prevention. In the future, physicians should therefore thoroughly caution about the potential risks and often limited cosmetic benefits of dermabrasion.

Adherence to “No Transfer to Hospital” Advance Directives Among Nursing Home Residents

ObjectivesMany older adults in long-term care (LTC) experience acute health crises but are at high risk of transfer distress and in-hospital morbidity and mortality. Residents often complete advance directives (ADs) regarding future care wishes, including directives for hospital transfers. This study aims to estimate the prevalence of, and adherence to, “no transfer to hospital” ADs in LTC, and to explore the circumstances leading to transfers against previously expressed directives. DesignWe conducted a mixed methods study in 10 nursing homes in Nova Scotia, Canada. A total of 748 resident charts and Emergency Health Services (EHS) database notes were reviewed from 3 time periods spanning implementation of a new primary care model, Care by Design (CBD). MeasuresADs were divided into those requesting transfer to hospital vs on-site management only, which were then analyzed in relation to actual hospital transfers. Reasons for EHS calls, management, and qualitative data were derived from the EHS database. Resident variables were obtained from LTC charts. Measures were compared between time periods. ResultsADs were complete in 92.4% of charts. Paramedics were called for 80.5% of residents, and 73.6% were transferred to hospital, 51.3% of whom had explicit ADs to the contrary. The majority of those were transferred for fall-related injuries, followed by medical illness. Unclear care plans, symptom control, and perceived need for investigations and procedures all influenced transfer decisions. Conclusions/ImplicationsThe use of “no transfer to hospital” directives did not appear to impact the number of residents being transferred to acute care. Half of those transferred to hospital had explicit ADs to the contrary, largely driven by fall-related injury. The high incidence of injury-related transfers highlights an important gap in advance care planning. Clarifying transfer preferences for injury management in advance directives may lead to better end-of-life experiences for residents and improve effective resource utilization.

Investigation of the Preferred Learning Styles of Persons Living with Dementia

The purpose of this investigation was to determine the preferred learning styles of persons living with dementia using the learning styles inventory for persons with dementia. Furthermore, this investigation evaluated unit productivity and job satisfaction of nursing assistants when activities of daily living were designed using the residents’ preferred learning styles. Revealed through literature review was the concern that nursing assistants in long-term care experience resident resistance to care and resident agitation which is often related to the resident’s cognitive decline and confusion which reduces unit productivity and makes task completion difficult. Also, through a literature review, the most significant job satisfaction for the nursing assistant was about the relationship that was experienced and shared with the residents in their care. Although a great deal of research exists on preferred learning styles of children and adults, there appear to be limited studies conducted on persons living with dementia. Also, there is limited information surrounding the subject of whether if knowing the preferred learning styles of patients living with dementia helps foster cooperation during activities of daily living and increases unit productivity while maintaining or improving nursing assistant relationships with their residents.

A qualitative examination of policy and structural factors driving care workers\u2019 adverse experiences in long-term residential care facilities for older adults in Cape Town

BackgroundThere is lack of adequate training and policy support for employed care workers (CWs) employed in the South African (SA) older persons’ sector. Existing literature neglects the influence of training and policy support on CWs’ experiences in long-term care (LTC) for older adults in residential care facilities (RCFs). We investigated the ways in which CWs’ experiences are rooted in the lack of adequate training and policy support.MethodsQualitative data was collected through focus group (FG) interviews with 32 CWs employed in RCFs in the City of Cape Town. Data was also collected using semi-structured interviews with representatives of five RCFs for older adults and four training organisations providing CW training in the City of Cape Town, South Africa.ResultsDespite some positive caregiving experiences, CWs face role ambiguity and experience care work as a ‘career-less job’. They also face poor employment conditions, negative interpersonal relations at work, and role overload. They are not coping with the demands of LTC due to role overload, and lack of basic caregiving skills, coping skills and socio-emotional support. Their motivation to cope and provide quality care is hamstrung by their experiences of role ambiguity, poor employment conditions, negative interpersonal relations at work, and lack of career growth opportunities.ConclusionsFindings suggest that CWs’ experiences derive from the policy and structural context of caregiving. Policy inadequacies and lack of structural support create conditions for adverse conditions which negatively impact on CWs motivation and ability to cope with the demands of LTC. Lack of policy implementation presents structural barriers to quality LTC in the older persons’ sector. Implementation of policies and systems for professionalising care work is long overdue.

The Long-Term Care Experiences and Care Needs of Parents Caring for Children With Adrenoleukodystrophy

Children suffering from adrenoleukodystrophy (ALD) requires life-long care. Little is known about the care needs of parents of ALD children at different stages of their disease. The purpose of this study was to understand the long-term care experiences and care needs of parents caring for their ALD children. A descriptive qualitative study with 7 in-depth interviews was conducted with parents. The results of these care experiences were distinguished into three phases: "pathogenesis to diagnosis", "rapid deterioration of physiological functions", and "bedridden until the death". The long-term care experiences revealed five themes, including "chaos and helplessness to seek medical attention then being forced to accept", "self-accusation and guilt", "strengthening parents' toughness", "seizing the moment and facing the future", and "accompanying children through life without pain". Within the three phases, the care needs comprised the three themes of "integrating resources and providing immediate care", "obtaining information and support regarding ALD rapidly", and "establishing individualized long-term care". This study revealed the long-term care experiences and care needs of the parents of ALD children. Providing individualized care, nursing instruction, and telephone consultation as well as connecting case managers with the hospice-care team will help facilitate and meet the care needs of these parents.

New Opportunities for Cancer Health Services Research: Linking the SEER-Medicare Data to the Nursing Home Minimum Data Set.

The Surveillance, Epidemiology and End Results (SEER)-Medicare data combine clinical information from population-based cancer registries with Medicare claims. These data have been used in many studies to understand cancer screening, treatment, outcomes, and costs. However, until recently, these data included limited information related to the characteristics and outcomes of cancer patients residing in or admitted to nursing homes. To provide an overview of the new linkage between SEER-Medicare data and the Minimum Data Set (MDS), a nursing home resident assessment instrument detailing residents' physical, psychological, and psychosocial functioning as well as any therapies or treatments received. This is a descriptive, retrospective cohort study. Persons in SEER-Medicare diagnosed with cancer from 2004 to 2013 were linked to the 2011-2014 MDS, with 17% of SEER-Medicare patients linked to the MDS data. During 2011-2014, we identified 318,617 cancer patients receiving care in a nursing home and 256,947 cancer patients newly admitted to a total of 10,953 nursing homes. Of these patients, approximately two thirds were Medicare fee-for-service beneficiaries. The timing from cancer diagnoses to nursing home admission varied by cancer. In total, 93% of all patients were admitted directly to a nursing home from an acute care hospital. The majority of patients were cognitively intact, 21% reported some level of depression, and 9% had severe functional limitations. The new SEER-Medicare-MDS dataset provides a valuable resource for understanding the postacute and long-term care experiences of cancer patients receiving care in United States' nursing homes.

Chronic Grief Management: A Live-Streaming Video, Group-Based Intervention for Family Caregivers of Individuals With Dementia in Long-Term Care.

Family caregivers of individuals with Alzheimer's disease and related dementias (ADRD) experience long-term mental health effects. Although caregivers who place relatives in long-term care (LTC) experience increased depression, anxiety, and chronic grief post-placement, interventions to improve caregivers' mental health have focused mainly on in-home care. Current researchers previously tested a group-based Chronic Grief Management Intervention (CGMI) with ADRD caregivers of individuals in LTC, with significant effects on caregiver mental health outcomes. In the current study, researchers adapted the CGMI for synchronous online video using Adobe® ConnectTM and iPads® (Chronic Grief Management-A Live-Streaming, Online Intervention [CGMI-V]). Specific aims were to test feasibility of digital delivery of the CGMI-V and explore caregivers' online group experience. Researchers assessed participants at baseline for sociodemographic information and at the end of the program with a four-item satisfaction survey and focus group. Digital delivery of the CGMI-V was feasible and caregiver satisfaction was high. [Journal of Psychosocial Nursing and Mental Health Services, 57(1), 17-24.].

Mobile Technology to Assess Balance During Sit to Stand Manuever Among Older Adults at Risk for Falling

Older adults over age 65 are susceptible to loss of balance for a variety of reasons including drops in blood pressure with standing (orthostatic hypotension [OH]; Gray-Miceli, Ratcliffe, Thomasson, Quigley, Li & Craelius, 2016). OH is a treatable condition, and cause of falls if detected. Nearly 50% of the 1.43 million older adults in long-term care experience falls (National Center for Injury Prevention and Control, 2017). Falls often occur among older adults in long term care during periods of transitioning, where older adults are susceptible to loss of balance and increased risk to fall. As found in our prior work, older adults with OH may not always experience classic dizziness symptoms that may accompany OH (Gray-Miceli, Ratcliffe, Liu, Wantland & Johnson, 2012; Gray). To better understand this phenomenon, our project adapted a cellphone as an inertial measurement unit attached to the person’s center of mass to determine body sway. The objective of this pilot study was to determine if a relationship was observable during the sit to stand maneuver (StS) while older adults wore a Smartphone measuring three dimensions of motion among older adults who had evidenced of symptoms or OH. A sample of four older adults from a rehabilitation facility who were 65 years of age, receiving physical therapy at the time of testing, were cognitively intact, able to perform the StS maneuver and had no active cancer, fractures or serious injuries were recruited and enrolled. Oh determinations, pulse rate and symptoms of dizziness were elicited during a 30 second StS maneuver. In Patient A and Patient B we present the Z-axis and X-axis of front acceleration and patterns of motion side by side for case comparison while highlighting clinical findings. In Patient B, a greater degree of sway at the start of the StS maneuver is noted. Patient B’s blood pressure also dropped 33 mmHg and there were symptoms of dizziness. Drops in mean arterial blood pressure were greater among those with symptomatic OH. Limitations of this pilot include noise, selection of filters and time stamping of the data. Project aims are to help clinicians prevent falls by further assessing symptoms among elders who suffer from LOB and OH.

Reconstructing the Boundaries of Dementia: Clinical Improvisation as a Musically Mindful Experience in Long Term Care

This study explores the use of clinical improvisation with clients either showing symptoms of or having a diagnosis of dementia (related symptoms, e.g. social isolation, depression, disorientation, and cognitive deterioration). Many studies have been completed on the use of music therapy with this population; however few have focused on improvisation. This study is unique in that it explores the experiences of improvisation with a focus on musical analysis and meaning. Through a qualitative study of eight weekly sessions with six different female clients, this investigation aims to offer a rich description of moments of improvised music in relation to characteristics that often deteriorate with dementia. A discussion on the transcendence of certain boundaries of dementia through the natural qualities of mindfulness that exist within a musical experience is provided.

Experience in managing patients with Churg-Strauss syndrome.

Our goal was to analyze the possibilities of impro­ving the diagnostics of CSS and to improve the effectiveness of treatment according to the existing literature and our own experience of long-term care for patients with eosinophilic granulomatosis with polyangiitis or Churg-Strauss syndrome (CSS). The medical histories of three female patients aged 26 to 46-years and a 20-year-old male patient were considered. The duration of the disease before the established diagnosis was 5-17 years. Anamnesis and medical documents analysis showed a typical CSS debut in the form of allergic rhinitis, nasal polyps, which were recurrent after polypectomy, and respiratory disorders, which were regarded as bronchitis or bronchial asthma – corresponding to the first phase, also called the prodromal or allergic stage of CSS. The prodromal period lasts up to 10 years or more and is characterized by various allergic manifestations, more often – pollinosis or bronchial asthma, that is difficult to control. But CSS can be suspected because of low effectiveness of the therapy with inhaled steroids, lack of effect of antibiotics and eosinophilia more than 10% that occurs periodically. Even in the third stage of CSS in systemic manifestations of vasculitis and severe secondary lesions of organs and tissues with functional impairment, constant intake of maintenance doses of corticosteroids and cytostatics allows to achieve stabilization of the process in patients with CSS.

Experiences of a Mass Interinstitutional Relocation for Long-Term Care Staff

ABSTRACTThis research explored long-term care (LTC) staff perceptions and experiences of working in LTC and providing care to residents following a mass interinstitutional relocation. In-depth, semistructured interviews were conducted with 63 LTC workers. Thematic analyses revealed three overarching themes related to how staff members perceived their relationships with other staff members following relocation. The first theme, post-relocation relationships between staff members, included the subthemes “Staff are segregated from each other” (physical distance) and “We were a family” to “barely say hi” (psychological distance). The second theme, post-relocation stress, has two subthemes: “Staffing is our big issue” and consequences of stress: absenteeism and leave. The third theme is recommendations for improving and managing staff relationships post-relocation. Relationships among staff members are integral to working in LTC and providing care to residents following a mass interinstitutional relocation. Recommendations for improving staff relationships and morale are suggested.

Prolonged Field Care in Support of Operation Inherent Resolve, 2016.

The authors present their experience in emergency and longterm medical care by Special Operations Forces (SOF) medical providers in an austere environment. In this case, a Special Forces Operational Detachment-Alpha (SFOD-A) was deployed in support of Operation Inherent Resolve, partnered with indigenous combat forces.

Dental students' reflections about long-term care experiences through an existing model of oral health.

The aim of this study was to explore students' reflective thinking about long-term care experiences from the perspective of a model of oral health. A total of 186 reflections from 193 second-year undergraduate dental students enrolled between 2011/12 and 2014/15 at the University of British Columbia were explored qualitatively. Reflections had a word limit of 300, and students were asked to relate an existing model of oral health to their long-term care experiences. We have identified the main ideas via a thematic analysis related to the geriatric dentistry experience in long-term care. The thematic analysis revealed that students attempted to demystify their pre-conceived ideas about older people and long-term care facilities, to think outside the box, for example away from a typical dental office, and to consider caring for elderly people from an interprofessional lens. According to some students, not all domains from the existing model of oral health were directly relevant to their geriatric experience while other domains, including interprofessionalism and cognition, were missing. While some participants had a positive attitude towards caring for this cohort of the population, others did not take this educational activity as a constructive experience. The nature of most students' reflective thinking within a long-term care experience showed to be related to an existing model of oral health. This model can help to give meaning to the dental geriatric experience of an undergraduate curriculum. Such experience has been instrumental in overcoming potential misconceptions about long-term care and geriatric dentistry.

Pain Management Still a Pain

Pain Management Still a Pain

Empowerment and Art Therapy With Marginalized Populations in Long-Term Care: A Team Perspective (Autonomisation et art-thérapie auprès de populations marginalisées en soins de longue durée : une perspective d’équipe)

ABSTRACTWe represent a team of six art therapists working together with InnerArt Inc. possessing over 50 years of accumulated experience in long-term care. This article is about sharing our collective knowledge about art therapy for individuals who have experienced various forms of marginalization. This article will address anti-oppression theory and practice promoting empowerment in long-term care for young adults, for cognitively impaired older adults, for those who live with mental health challenges, addiction, and who have experienced homelessness. These issues all have common threads that will emerge in the analysis of the team's clinical practice.