An investigation of factors related to the use of respite care services for children with severe motor and intellectual disabilities (SMID) living at home in Japan

Limited time away from the child is cited as the main factor that increases the burden for the primary caregiver of severely disabled children. The aim of this study was to quantitatively elucidate the factors related to the desire to use social services and the actual use of respite care services by the primary caregivers of severely disabled children in Japan. In this study, we investigated the use of respite care services in accordance with the primary caregivers’ wishes by examining inhibiting or promoting factors associated with respite care service use only among those who wished to use social services. A total of 169 Japanese mothers participated and answered the questionnaires. We conducted a logistic regression analysis and a multiple regression analysis to investigate the factors related to respite care service use. The most important factors affecting a primary caregiver's desire to use social services were the belief that the child would enjoy using social services and the family's approval of the social service use. The most important factors affecting respite care service use were the family's approval of the use and a large care burden on the primary caregiver. Respite care services should be sought out before the care burden becomes too great to enable the primary caregiver to more easily contribute to the continuation of home care. A background of mother–child separation anxiety disrupted the use of respite care. However, believing that the child enjoys using social services may reduce primary caregivers’ psychological resistance to being separated from their child, which is supported by tradition. Thus, it is also important for respite care service providers to provide information about the children to their primary caregivers and families while they are using respite care services.     

The physician's Alzheimer's disease management guide: Early detection and diagnosis of cognitive impairment,Alzheimer's disease and related dementia

Primary care professionals play a critical role in the care of their patients. In clinical practice, early detection and diagnosis of Mild Cognitive Impairment, Alzheimer''s disease and related dementia are often missed or delayed. Disclosure of diagnosis is not timely or not revealed. Though the methods that could improve early detection and diagnosis have remained the same over the decades with little change, they provide opportunities for early intervention, treatment and improvement in patient care. Emerging research suggests that though the disease process begins years prior to the clinical diagnosis, the healthcare system and health care professionals remain distant and reluctant to provide the service of annual cognitive assessment, which has been recommended by the Medicare program for older adults aged 65 years and older. Findings support that Alzheimer''s disease and related cognitive impairments have gone under detected, underdiagnosed and undertreated. This article seeks to provide valuable and equitable information in the form of a clinician''s guide for removing the barriers to early detection and diagnosis of cognitive impairments and offers an unprecedented opportunity to improve the clinical outcomes and care of older adults with various levels of cognitive decline, including mild cognitive impairment, Alzheimer''s disease, and related dementias. This article provides information on understanding and addressing the challenges faced by health care professionals, including primary care clinicians; removing the barriers to cognitive assessments; educating this professional group on the importance of brain health, early detection, and diagnosis for their older adult patients; and providing these professionals with the ability to transfer their knowledge into more defined care planning. Until cognitive screening has been fully accepted and implemented for the optimal the care of older adults, health-related efforts should include the promotion and education of brain health, early detection, and diagnosis in the education of health care providers.     

Homeless people's experiences of medical respite care following acute hospitalisation in Denmark

The aim of this study was to explore homeless people's health perspectives and experiences of a 2‐week medical respite care programme following acute hospitalisation. There is a high level of health inequality when comparing the health status of homeless people to the general population, including increased mortality and morbidity. Homelessness predisposes an increased risk of infectious disease, cancer and chronic illness, such as diabetes and cardiovascular disease. Moreover, homeless people have a higher frequency of acute hospitalisation than general population estimates. In order to facilitate the transition from hospitalisation back to life on the streets, homeless people who were acutely hospitalised in the Capital Region of Denmark were offered 2 weeks of medical respite care from the day of discharge by a non‐governmental organisation. This is a qualitative study with a phenomenological hermeneutical approach based on narrative interviews of 12 homeless people who received medical respite care from 1 March 2016 to 30 September 2016. Data were collected through individual semi‐structured interviews and analysed according to Lindseth and Norberg's presentation of Paul Ricoeur's theory of interpretation. The analysis identified four themes: (i) basic needs are of highest priority; (ii) a safe environment provides security and comfort; (ii) social support is just as important as healthcare; and (iv) restitution facilitates reflection. The findings indicated that the medical respite care centre provided a place of rest and restitution following hospitalisation, which made room for self‐reflection among the homeless people regarding their past and present life, and also their wishes for a better future. This study also indicates that a medical respite care stay can contribute to the creation of a temporary condition in which the basic needs of the homeless people are met, enabling them to be more hopeful and to think more positively about the future.     

The association between cognitive impairment and community service use patterns in older people living in Australia

Family plays a vital role in supporting individuals with dementia to reside in the community, thus delaying institutionalisation. Existing research indicates that the burden of care‐giving is particularly high for those caring for a person with dementia. Yet, little is known about the uptake of community services by people with a diagnosis of dementia. Therefore, this study aims to better understand the relationship between cognitive impairment and the receipt of community care services. In order to examine the relationship, secondary data collected across Queensland, Australia, from 59,352 home‐care clients aged 65 and over during 2007–2008 are analysed. This cross‐sectional study uses regression analyses to estimate the relationship between cognitive impairment and service mix, while controlling for socio‐demographic characteristics. The dependent variables include formal services, informal care and total home‐care service hours during a 12‐month period. The findings of this study demonstrate that cognitive impairment is associated with accessing more hours of respite and day centre care but fewer hours of other formal care services. Additionally, the likelihood of support from an informal caregiver increases when a client becomes cognitively impaired. Therefore, this study demonstrates that there is an increased need for respite programmes to support informal caregivers in the future, as the population of people living with dementia increases. These findings support the need for investigations of new and innovative respite models in the future.     

Parenting children requiring complex care: a journey through time

Background Parents of children requiring complex care provide intense and demanding care in their homes. Unlike professionals who provide similar care in institutions, parents may not receive regular breaks from care giving. As a result, parents, over time, experience health and social consequences related to care giving. Respite care, one form of a break from care giving, is frequently cited as an unmet need by such parents. Method Given the paucity of literature on the impact of care giving over time, an ethnographic approach that involved in‐depth interviews, participant observation, eco‐maps, and document review was used. Parents of children requiring complex care, nurses and social workers participated in the study. Results A developmental map of care giving over time was constructed from the parents' retrospective accounts of parenting a child requiring complex care. The developmental map describes the trajectory of care for the children from infancy through young adulthood and the parents' evolving needs for respite care. Conclusion Existing literature focuses on the day‐to‐day experiences of parents, who are carers, rather than their experiences over time. As parents of children requiring complex care are providing care from infancy through the death of either child or parent, respite needs will change. This developmental map identifies how a group of parents reported these changes in care giving and their perceived needs for respite care.     

A review of the factors associated with the non‐use of respite services by carers of people with dementia: implications for policy and practice

The use of respite services by carers has been shown to extend the length of time people with dementia can remain living in the community with family support. However, the use of respite services by informal carers of people with dementia is often low and does not appear to match carer need. To better understand how to address carers' unmet need for respite, the factors that impede respite service use must be identified. To achieve this, a narrative synthesis of published academic literature (1990–2011) was undertaken regarding factors associated with not utilising different types of respite services utilising Anderson's Behavioural Model of Service Use. The review reinforces the importance of the assessment and matching of services to the needs of individual carers and care recipients at the local level. It also highlights the need to move beyond care pathways for individuals. To support respite use there is a need for local action to be augmented at a community or population level by strategies to address attitudinal and resource barriers that influence sub‐groups of the carer population who may be more vulnerable to service non‐use.     

Respite Care

Recent respite care research is reviewed, advantages and disadvantages of respite- and home-based care are presented, and some recommendations are introduced. It may be more costeffective to invest in caregivers' physical, financial, and emotional well-being than to provide the care required when caregivers become "patients." Practical and policy issues are raised regarding the desirability of investment in respite care.     

Care for a break? An investigation of informal caregivers' attitudes toward respite care using Q-methodology

OBJECTIVE: To investigate informal caregivers' attitudes toward respite care. METHOD: Interviews with informal caregivers during open-house support groups (three) for informal caregivers, conducted late 2004 at Informal Care Support Centres in the city of Rotterdam, The Netherlands. A Q-methodological study was conducted. Informal caregivers were asked to rank-order 39 statements regarding motivation for providing informal care; supporting capacity; physical, psychological, practical, financial, relational and social obstacles; subjective burden; need for support; experienced support; and propensity and impediments to make use of respite care. In addition, respondents explained their Q-sort in writing and completed a questionnaire regarding characteristics of the caregiver, the care recipient, and the objective and subjective burden of their care giving situation. Individual Q-sorts were analysed using PQMethod 2.11 (statistical method factor analysis with a varimax rotation). Objective of Q-analysis was to reveal a limited number of corresponding ways the statements were sorted. For the factors identified, composite sorts were determined. Factors were interpreted and described using the composite sorts, differences and similarities in rank value of statements between factors and the explanations by respondents. RESULTS: We found three distinct groups of caregivers: informal caregivers who need and ask for respite care, those who need but won't ask for respite care, and those that do not need respite care. Caregivers in the first two groups experience substantial burden, while those in the third group enjoy sufficient support and appear to manage pretty well. Caregivers in the second and third group derive considerable satisfaction from care giving. On balance, caregivers in the first two groups would sometimes rather have someone else take over their task. The first group feels misunderstood and undervalued by health and welfare organisations and has problems obtaining respite. The desire for respite of caregivers in the second group is not unambiguous, affected by care recipient resistance against respite. CONCLUSIONS: Respite care programmes should target caregivers in the first two groups. Regarding the second group, effort should be directed to both caregiver and care recipient. They need to be convinced that it is in their mutual interest to make the care giving task manageable in the long run, because they report serious burden from care giving coupled with a resistance to respite care.     

Information‐sharing with respite care services for older adults: a qualitative exploration of carers' experiences

Respite services play an important role in supporting older adults and their carers. When an older person is unable to fully represent themselves, provision of respite care relies on effective information‐sharing between carers and respite staff. This study aimed to explore, from carers' perspectives, the scope, quality and fit of information‐sharing between carers, older people and respite services. An explorative, cross‐sectional qualitative study involving a purposive sample of 24 carers, recruited via carer support groups and community groups in voluntary organisations, was undertaken in North East Scotland. Data were collected from August 2013 to September 2014, with participants taking part in a focus group or individual interview. Data were analysed systematically using the Framework Approach. The multiple accounts elicited from carers identified how barriers and facilitators to information‐sharing with respite services changed over time across three temporal phases: ‘Reaching a point’, ‘Trying it out’ and ‘Settled in’. Proactive information‐sharing about accessibility and eligibility for respite care, and assessment of carers' needs in their own right, were initially important; as carers and older people moved on to try services out, time and space to develop mutual understandings and negotiate care arrangements came to the fore; then, once shared expectations had been established, carers' chief concerns were around continuity of care and maintaining good interpersonal relationships. The three temporal phases also impacted on which modes of information‐sharing were available to, and worked best for, carers as well as on carers' perceptions of how information and communication technologies should be utilised. This study highlights the need for respite staff to take proactive, flexible approaches to working with carers and to make ongoing efforts to engage with carers, and older people, throughout the months and years of them utilising respite services. Information and communication technologies have potential to enhance information‐sharing but traditional approaches will remain important.     

Transition of Patients with COPD Across Different Care Settings: Challenges and Opportunities for Hospitalists

Abstract

Hospitalists play an important role in treating current and preventing future acute exacerbations of chronic obstructive pulmonary disease (AECOPD), which are associated with high rates of medical resource use and morbidity. Comprehensive admission screening and diagnostic tests are important in enabling hospitalists to reliably identify patients with AECOPD, the severity of the episode, and related issues that may prolong patients' hospital length of stay. Recurring exacerbations, especially those that require repeated acute care, can reduce physical activity and accelerate pulmonary decline and risk of death. Recommended pharmacotherapies for AECOPD should include short-acting bronchodilators, systemic corticosteroids, and appropriate antibiotics in cases of suspected bacterial infection. Patients with demonstrable hypoxemia or respiratory failure may benefit from oxygen and/or ventilatory support. Long-term disease management with the goal of preventing future exacerbations should include ongoing emphasis toward smoking cessation and up-to-date vaccination, in addition to prescribing maintenance pharmacotherapies in accordance with respiratory treatment guidelines. Additional benefits may be derived from nonpharmacologic therapies, such as pulmonary rehabilitation, weight-loss recommendations, and treatment of obstructive sleep dyspnea when present. Effective communication among members of the inpatient and outpatient health care teams, the patient, and his or her caregivers is an important aspect of care transitions. Hospital discharge summaries should be transmitted to the patient's primary care physician and be readily available at the first follow-up visit. Discharge coaches and other allied health care providers can aid hospitalists in reinforcing self-management skills and patient education, and in emphasizing the importance of follow-up visits. Recent findings suggest that health and cost benefits are associated with improved COPD management. This article focuses on the pivotal role of the hospitalist in promoting and facilitating the steps toward improving quality outcomes and transitions of care for patients with COPD.     

Why carers of people with dementia do not utilise out‐of‐home respite services

While many people with dementia require institutional care, having a co‐resident carer improves the likelihood that people can live at home. Although caregiving can have positive aspects, carers still report a high need for respite. Despite this need, the use of respite services for carers of people with dementia is often low. This article investigates carer beliefs regarding out‐of‐home respite services and why some carers do not utilise them. A total of 152/294 (51.7%) carers of community‐dwelling people with dementia (NSW, Australia) who were sent a survey completed it (November 2009–January 2010). Despite reporting unmet need for both services, 44.2% of those surveyed were not utilising day respite and 60.2% were not utilising residential respite programmes. Binary logistic regression models were used to examine factors associated with non‐use using the Theory of Planned Behaviour within an expanded Andersen Behavioural Model on a final sample of 113 (due to missing data). The model explained 66.9% of the variation for day centres, and 42% for residential respite services. Beliefs that service use would result in negative outcomes for the care recipient were strongly associated with non‐use of both day care [OR 13.11; 95% CI (3.75, 45.89)] and residential respite care [OR 6.13; 95% CI (2.02, 18.70)] and were more strongly associated with service non‐use than other predisposing, impeding and need variables. For some carers who used services despite negative outcome beliefs, the benefits of respite service use may also be diminished. To improve use of out‐of‐home respite services in this vulnerable group, service beliefs should be addressed through service development and promotion that emphasises benefits for both carer and care recipients. Future research utilising behavioural service models may also be improved via the inclusion of service beliefs in the study of health and social service use.     

Perspectives of Australian family carers of people with dementia on the 'cottage' model of respite: Compared to traditional models of residential respite provided in aged care facilities

The majority of people living with dementia reside in the community and are often reliant on the support of informal carers to do so. Family carers face many challenges in supporting the person with dementia to remain at home, and short‐term respite care is a valued service that offers a temporary break from the role. Respite cottages provide short‐term care in a residential home‐like setting with a limited number of clients and is a more flexible approach to accessing the service. Disproportionate use of cottage respite in Australia suggests this model is preferred over traditional respite within residential aged care facility (RACF) settings, yet limited research exists to compare these models. This study sought to understand the perceptions of carers who had used cottage respite in comparison to other models, and explore the contribution of cottage respite for supporting carers to continue in their role and maintain their care recipient (CR) living at home. Semi‐structured interviews were conducted with 126 family carers who had used one of two New South Wales‐based respite cottages within a 2‐year period; 67 of whom had also used RACF respite. Thematic analysis revealed four main themes around the benefits of cottage respite: (a) an effective essential service, (b) flexibility, (c) familiarity and (d) appropriateness, especially for early stage or younger onset dementia. Carers indicated that the more homely, familiar and intimate cottage model of respite care was preferential to that of the larger, institutional‐style RACF respite setting. Carers credited the cottage model of respite service with delaying their need for permanent residential placement by over 12 months. The cottage respite model provides an important avenue to supporting the individual needs of dementia dyads, with potential to delay permanent placement, and should be offered more broadly to provide people with more choice about their care.     

Anatomy of the Alzheimer's Respite Care Program (ARCP)

The Alzheimer's Respite Care Program is an innovative project designed to serve caregivers of Alzheimer's clients. This unique model offers both in-home and instilutionally based respite care. Two community organizations which offer Adult Day Care respite forged a partnership to coordinate and expand their continuum of care, bringing many of the benefits of a day care setting into the home. This paper compares the original project conceptualization with its current design today. Factors affecting this evolution are explored together with program modifications incorporated to more appropriately respond to local needs. Key marketing strategies are discussed coupled with a presentation of program successes and recommendations for the future.     

The Role of Cultural Factors on Clients' Attitudes Toward Caregiving,Perceptions of Service Delivery,and Service Utilization

SUMMARY

The purpose of the present study was to gain a better understanding of the role of culture in the use of respite services. Culture was defined in three different ways: (1) ethnicity (African-American, Hispanic/Latino, or White); (2) relationship of the caregiver to the care receiver (spouse, adult-child, or other); and (3) geographic location (urban or rural). All three of these classifications were significantly related to the use of respite services, even after controlling for elders' income. Two sets of potential intervening variables that might explain the effects of culture on respite use were investigated: caregivers' attitudes and beliefs, and clients' evaluation of aspects of service delivery. When these variables were controlled, the main effects for relationship of the care-giver to the care receiver and geographic location on respite use were no longer significant. The effect of ethnicity on respite use persisted in the presence of these controls, but was greatly diminished. The results suggest specific avenues by which respite providers can increase appropriate service use among caregivers of dementia patients.     

Palliative care in non-cancer patients and the neglected caregiver

Diseases other than cancer can be progressive and have a terminal phase and many of the philosophies of palliative care are applicable. The case studies emphasize two types of palliation. First, for the patient and that is well recognized and second, palliation for the caregiver which should include provision of respite care.     

Coming ‘Home’: Place bonding for parents accessing or considering hospice based respite

Little literature examines the cognitive journey taken by parents considering/receiving hospice care for their child. A constructivist grounded theory study explored 38 parents' views of considering/using a children's hospice. Data analysed from focus groups and interviews identified three main concepts. The focus of this paper is identified as Coming ‘Home’. This concept depicts the desire and the sense of searching that parents experienced in trying to find a place, other than their actual home, where their child could access a caring environment and their parents received some respite from caregiving. Despite there being a paradox associated with hospice-based respite, once they had crossed the threshold the parents bonded with the place and experienced rootedness and familiarity. The hospice became a place of living and belonging; a place where they could ‘come home’.     

“Between the Devil and the Deep Blue Sea”: The Beliefs of Caregivers of People With Dementia Regarding the Use of In-Home Respite Services

This article details results from qualitative research with caregivers in regard to the beliefs they associate with the use of in-home respite services. Outcomes are perceived by caregivers in relation to care recipient personal safety and the avoidance of negative consequences through the provision of supervision in the caregiver's absence. Use of in-home services challenges normative beliefs for some caregivers, particularly for spousal caregivers who feel it is their role to provide assistance that is needed in the home. Likewise, perceived inflexibility and the inability of in-home services to provide responsive and personalized care make the use of in-home services difficult and may inform control beliefs. Implications are discussed in relation to community care pathways and the promotion and development of in-home respite services to better target caregiver beliefs and respond to caregiver perceived needs.     

Maternal depression and perceived social support as predictors of cognitive function trajectories during the first 3 years of life for preterm infants in Wisconsin

Background Among families of infants born preterm, the association between post‐natal depression and children's cognitive function is not well understood, but thought to be compromised. The purpose of this study is to investigate maternal depressive symptoms and perceived social support as predictors of children's cognitive function trajectories. Methods This is a longitudinal study of a sample of infants born preterm (less than 37 weeks) in Wisconsin. This study includes 130 infants who were hospitalized in one of three Wisconsin neonatal intensive care units in 2002–2005 and followed until 36 months of age. Maternal depressive symptoms were measured using the Center for Epidemiologic Studies Depression Scale. Social support was measured using the Maternal Support Scale. Children's cognitive function was measured using the Bayley Scales of Infant Development, 2nd Edition, and the Stanford–Binet Intelligence Scale, 5th Edition. Results Children's cognitive function trajectories declined initially and then increased. Being female (coefficient = 5.14, SE = 1.89) and non‐poor (coefficient = 11.26, SE = 5.78), and having a mother who has a graduate degree (coefficient = 7.67, SE = 3.37) was associated with higher levels of cognition initially. Being white was associated with a more optimal cognitive trajectory. Although depression did not predict children's cognitive trajectories, the presence of clinically elevated depressive symptoms at 9 months post term was associated with lower cognitive functioning at 16 months when mothers reported low social support. Conclusion Post‐natal depressive symptoms appear to have a meaningful, dynamic influence on the cognitive outcomes of children born preterm, above and beyond family socio‐demographic risk when the presence and timing of perceived social support are considered. Interventions to ameliorate developmental risk associated with preterm birth should include repeated assessments of maternal social support and post‐natal depression and be targeted towards socially disadvantaged families.     

Pattern of general practitioners' referrals to a rural community mental health centre: a 3-year analysis

Community mental health centres (CMHCs) represent a major trend towards developing locally based community psychiatric services. The Beaconfield Centre described here is an example of a rural project which aims to provide comprehensive and accessible psychiatric services to the population of the town of Grantham, in south Lincolnshire. The rate and pattern of referrals to the Beaconfield Centre over a period of 3 years are examined. It was found that the bulk of the general practitioners' (GPs) referrals were directed mainly to Community Psychiatric Nurses (CPNs), 49%, followed by the Consultant Psychiatrists, 42%. GPs considered the nature of the patient's problem to be responsible for nearly 20% of the total referrals. More work is required to test the appropriateness of these referrals and assess the degree of congruence between the GPs' and the mental health team's perception. The paper also highlights the need to assess regional variations in the function of these centres and their relationship to both primary health care and traditional psychiatric services. The future composition and the policy of referrals to the Community Mental Health Team (CMHT) need to be reviewed, particularly in relation to the growing number of fund holding general practices. The future role of all mental health professionals working in community settings urgently needs to be redefined with reference to the role of the CPNs vis á vis day care nurses.     

Frequency and determinants of formal respite service use among caregivers of children with cerebral palsy in Ontario

OBJECTIVE: To describe the use of formal respite services among caregivers of children with cerebral palsy in Ontario and discuss the factors that may contribute to respite use and non-use. METHODS: A total of 468 caregivers were interviewed about their experience with formal respite services. Interviews were part of a larger cross-sectional study on caregiver health. Caregivers were asked about their knowledge of formal respite services; their use of formal respite services in the past year; financial implications relating to formal respite use; perceived barriers to formal respite service use; and reasons for not using formal respite services (if applicable). RESULTS: Nearly half (46%) of caregivers in the sample reported using respite services in the past year. Most of the caregivers who used respite services used more than one source of respite, had services provided in their home, often for less than 1 day, and reported using them more than six times. The most commonly cited reason for using formal respite services was for a planned break. Many factors influenced caregivers' use of formal respite services. Caregivers who had a child with a lower level of function, with multiple additional conditions, or who was male, were more likely to use formal respite services. Although over 90% of caregivers indicated that respite use is beneficial for both their family and child, over 60% reported facing many barriers while attempting to access respite services. CONCLUSION: Results from this cross-sectional study indicate that caregivers who used respite services used them frequently for breaks from caregiving. Caregivers described facing many barriers while attempting to access respite services therefore to improve caregiver's experience with respite services, strategies are suggested.