Spouse and Adult-Child Dementia Caregivers in Chinese American Families: Who Are More Stressed Out?

ObjectivesThough many studies have explored differences between spouses and adult children in dementia care, empirical evidence is lacking on racial- and ethnic-minority populations. To fill this research gap, this study examined care tasks, caregiver burden, and depressive symptoms of Chinese spouse and adult-child caregivers in dementia care. Guided by the stress process model, this study asked 3 questions: Do spouse and adult-child caregivers take up different care tasks and experience different levels of caregiver burden and depressive symptoms? Does gender moderate the differences between spouse and adult-child caregivers? Whether care tasks and burden mediate the association between being a spouse/adult-child caregiver and depressive symptoms?Setting and ParticipantsData were collected from a questionnaire-based survey of Chinese Americans who provided care for their family members with dementia in New York City. The analytical sample included 126 Chinese spouse or adult-child caregivers.MethodsCare tasks was indicated by intensity of 8 types of care tasks. Caregiver burden and depressive symptoms were measured by Zarit's Burden Interview and the 10-item Center for Epidemiologic Studies Depression Scale. Linear regression, interaction term (spouse/adult-child caregiver by gender), and path analysis were conducted to address the 3 questions.ResultsThe results of linear regression show no significant difference in care tasks between the 2 groups, but spouse caregivers had significantly higher levels of caregiver burden and depressive symptoms than adult children. Wives had higher levels of caregiver burden and depressive symptoms than husbands, daughters, and sons. Caregiver burden mediated the association between being a spouse caregiver and higher depressive symptoms, whereas care tasks did not shape such association.Conclusions and ImplicationsThis study highlighted the emotional stress of Chinese American older adults in providing care for their spouses. The findings indicate the necessity of developing culturally meaningful activities to support Chinese American spouse caregivers.     

Older Adults: What Every Paediatric Nurse Should Know

Older adults have always been important parts of children's lives, playing a variety of roles including grandparent, caregiver, friend, and neighbour. Grandparents also play a variety of roles in families. Often a child's first encounter with serious illness or death involves a grandparent or other older adult. Grandparents are also increasingly serving as primary caregivers for children. Paediatric nurses have long recognised their role in helping children cope with grief and loss associated with illness or death of a grandparent. Paediatric nurses need to be able to provide appropriate interventions and teaching when older adults are primary caregivers or assisting parents in the day-to-day care of the child. They also need to have sufficient knowledge about older adults to help parents and children understand the normal changes they will see in their aging loved ones, and to help parents effectively incorporate grandparents and older adults into children's lives.     

Experiences of transition from children's to adult's healthcare services for young people with a neurodevelopmental condition

Previous research has highlighted a lack of continuity of care when young people with a neurodevelopmental condition make the transition from children's to adult specialist healthcare services. A lack of planning, consistency, and availability of adult services has been found to lead to; increased anxiety, poor health outcomes, reduced support and some young people not receiving healthcare. The majority of transition research has focused on what health professionals consider important in the transition process, rather than focusing on the experiences of the young people and those closest to them. Our objective was to gather evidence from young people (and their families) who had experienced transition from children's to adult specialist healthcare services through semi-structured interviews. Volunteers were recruited from two London boroughs. All young people were aged between 18 and 25 years with a neurodevelopmental condition (Attention Deficit Hyperactivity Disorder, Autism Spectrum Disorder and/or an Intellectual Disability). Overall, we interviewed six young people with support from a family member. Five further family members were interviewed on behalf of the young person. In total, ten semi-structured interviews were transcribed verbatim and analysed using Interpretative Phenomenological Analysis. Four themes emerged from the analysis: (a) Parents as advocates, (b) Availability of adult's specialist health and social care services, (c) Lack of information sharing and (d) Transition as a binary, abrupt change. Our findings suggest the transition experience could be improved by changing service specifications to incorporate assessment and handover across the age range of 16–20 years. Additionally, statutory services should understand and provide the coordination role now offered by parents in transition. We suggest future research could evaluate the feasibility of a patient-owned online information sharing tool with information about relevant services for young people and their families.     

Exploring online identity construction for the caregivers of adults living with dementia and the value of interactions with health and social care professionals

Becoming an informal caregiver for an adult living with dementia has been shown to have a significant impact upon the conception of identity. This study aimed to identify how identity is constructed online amongst caregivers of individuals living with dementia and how healthcare interactions can influence identity development through the analysis of online web blogs. Sixteen online blogs (172 entries) were selected through purposive and snowball sampling, and discourse analysis was used to analyse online identity construction for informal caregivers of adults living with dementia. Six areas of online identity construction were identified: changing family role; powerful expert social campaigner; being an advocate; guardian of their relative's selfhood; sustaining creative and spiritual individuality and wider community member in online and real life. Further to this, the importance of health and social care service interactions in the development of caregiver identity revealed that professionals must ensure person-centred service contacts for caregivers. This is a challenging task in the pandemic climate where interactions between health and social care professionals and caregivers are limited due to isolation measures. It is evident that the blog format can provide a forum through which the identity of the caregiver of an adult living with dementia can evolve. The six areas of identity construction reveal the multifaceted nature of identity for the caregiver and the value of belonging to an online community both in relation to identity construction and support. This finding is especially applicable in the current pandemic when accessing a face-to-face community is challenging for caregivers who may be shielding or living in isolation. The findings of this research can aid health and social care professionals in understanding the development of caregiver identity and in providing appropriate support during service interactions, on accessing virtual and face to face community support.     

Rapid evidence assessment of approaches to community neurological nursing care for people with neurological conditions post‐discharge from acute care hospital

Neurological conditions represent leading causes of non‐fatal burden of disease that will consume a large proportion of projected healthcare expenditure. Inconsistent access to integrated healthcare and other services for people with long‐term neurological conditions stresses acute care services. The purpose of this rapid evidence assessment, conducted February–June 2016, was to review the evidence supporting community neurological nursing approaches for patients with neurological conditions post‐discharge from acute care hospitals. CINAHL Plus with Full Text and MEDLINE were searched for English‐language studies published January 2000 to June 2016. Data were extracted using a purpose‐designed protocol. Studies describing community neurological nursing care services post‐discharge for adults with stroke, dementia, Alzheimer's disease, Parkinson's disease, multiple sclerosis or motor neurone disease were included and their quality was assessed. Two qualitative and three quantitative studies were reviewed. Two themes were identified in the narrative summary of findings: (i) continuity of care and self‐management and (ii) variable impact on clinical or impairment outcomes. There was low quality evidence of patient satisfaction, improved patient social activity, depression scores, stroke knowledge and lifestyle modification associated with post‐discharge care by neurological nurses as an intervention. There were few studies and weak evidence supporting the use of neurology‐generalist nurses to promote continuity of care for people with long‐term or progressive, long‐term neurological conditions post‐discharge from acute care hospital. Further research is needed to provide role clarity to facilitate comparative studies and evaluations of the effectiveness of community neurological nursing models of care.     

社区居家养老意愿下居住方式和子女支持对老年人基层卫生服务需求的影响

目的:探讨居住方式和子女支持对老年人基层卫生服务需求的影响,使基层卫生服务更具针对性,以满足不同居家类型老年人的卫生服务需求。方法:利用2016年中国老年社会追踪调查数据,采用负二项Hurdle回归模型(NBH模型)分析。结果:与子女同住会显著提高城乡居家老年人对基层卫生服务的需求(P<0.05),子女经济支持则会显著降低需求(P<0.05);当老年人至少具有一项基层卫生服务需求时,子女情感支持会显著降低其对基层卫生服务的需求(P<0.05)。此外,户口、自评健康、是否有慢病、ADL水平、子女数都是社区居家养老老年人基层卫生服务需求的影响因素(P<0.05)。结论和建议:家庭照护在社区居家养老中发挥着重要作用,应将家庭责任融入社区居家健康养老制度中去;基层医疗卫生机构应根据居家养老老年人的家庭特征,有针对性的提供服务;应当关注农村老年人、失能老年人、患有慢病老年人的需求,丰富基层医疗卫生机构的服务内容,提升服务质量,更好的满足具有社区居家养老意愿老年人的医疗卫生需求。     

Balancing needs as a family caregiver in Huntington's disease: a qualitative interview study

Family members in families with severe chronic disease play important roles in care‐giving. In families affected by Huntington's disease (HD), caregivers encounter practical and emotional challenges and distress. Enduring caregiver burdens may lead to problems and caregivers are in need of social support and health services to deal with challenges. We wanted to explore coping strategies and behaviour patterns used by family caregivers to care for themselves, while caring for a family member with HD. Participants were recruited from hospitals and community‐based healthcare. The sample represents experiences from care‐giving in all stages of the disease. We conducted semi‐structured interviews with 15 family caregivers in Norway. The transcribed material was analysed by use of systematic text condensation, a method for cross‐case thematic analysis of qualitative data. We found that family members used various coping strategies, adjusted to the stage and progression of HD. They tried to regulate information about the disease, balancing considerations for protection and disclosure, within and outside the family. The participants made efforts to maintain a balance between their own needs in everyday life and the need for care for affected family member(s). As the disease progressed, the balance was skewed, and the family caregivers' participation in social activities gradually decreased, resulting in experiences of isolation and frustration. In later stages of the disease, the need for care gradually overshadowed the caregivers' own activities, and they put their own life on hold. Health professionals and social workers should acknowledge that family caregivers balance their needs and considerations in coping with HD. They should, therefore, tailor healthcare services and social support to family caregivers' needs during the different stages of HD to improve caregivers' abilities to maintain some of their own activities, in balance with care‐giving.     

Effects of the Medicare Alzheimer's Disease Demonstration on the use of community-based services.

STUDY QUESTION: Did the Medicare Alzheimer''s Disease Demonstration with its case management and community service waivers affect the use of community-based long-term care services among people with dementia and their primary caregivers? DATA SOURCES: Baseline and periodic caregiver interviews. Measures include client and caregiver attributes and self-reported service use. STUDY DESIGN: The demonstration randomly assigned voluntary applicants into treatment and control groups. Treatment group cases were eligible for case management and for up to $699 per month in community care benefits. The actual monthly entitlement varied among the eight demonstration communities due to regional cost and inflation adjustments over time. Analyses are for the year after enrollment. DATA COLLECTION: Analyses are of cases surviving six months or more in the community after enrollment (n = 5,209). Cases received baseline and semi-annual assessments. PRINCIPAL FINDINGS: The intervention of case management and community service reimbursement had a strong, consistent, and positive effect on the likelihood of using home care (including homemaker/chore services, personal care services, companion services) and adult day care. Treatment group clients were at least twice as likely as control group clients to be using any of the four community-based services. A similar, but less pervasive effect was achieved with caregiver training and support group participation. Reimbursement provided by the demonstration''s Medicare waiver was generally not sufficient to exceed the level of control group service acquired through private payment. CONCLUSIONS: Reimbursement levels within the demonstration may have enabled more individuals to purchase some services, but they were not sufficient to increase the average level of use over those in the control group. No consistent differences between demonstration models were found in service use likelihood or average use among users.     

Stress, cortisol and well-being of caregivers and children in home-based child care: a case for differential susceptibility

Background We examined whether children cared for by stressed caregivers show lower socio‐emotional well‐being and more stress, compared with children cared for by less stressed caregivers. Methods Perceived stress and cortisol levels of professional caregivers (n= 44), and associations with children's (n= 44) well‐being and cortisol levels in home‐based child care were examined. Results Caregiver perceived stress and cortisol levels were related to children's well‐being but not to children's cortisol levels. Children's social fearfulness acted as a moderator between caregivers' mean ratio of diurnal change in cortisol and children's well‐being. When caregiver cortisol levels decreased, more fearful children were reported higher on well‐being than less fearful peers. In contrast, when caregiver cortisol levels increased, more fearful children were reported lower on well‐being. Conclusions The findings point to differential susceptibility. Child care organizations and parents need to notice that a non‐stressful child care environment is in particular important for children with a difficult temperament.     

The impact of a complex care clinic in a children's hospital

Background The number of medically complex and fragile children (MCFC) cared for in children's hospitals is growing, necessitating the need for optimal care co‐ordination. The purpose of this study was to describe the impact of a nurse practitioner/paediatrician‐run complex care clinic in a tertiary care hospital on healthcare utilization, parental and primary care provider (PCP) perceptions of care and parental quality of life. Methods MCFC and their parents were recruited for ambulatory follow‐up by the hospital team to complement care provided by the PCP in this mixed methods single centre pre‐ or post‐evaluative study. Parents participated in semi‐structured interviews within 48 h of discharge; further data were collected at 6 and 12 months. Healthcare utilization was compared with equal time periods pre‐enrolment. Parental health was assessed with the SF‐36; parental perceptions of care were assessed using the Larsen's Client Satisfaction Questionnaire and the Measure of Processes of Care; PCPs completed a questionnaire at 12 months. Parental and PCP comments were elicited. Comparisons were made with baseline data. Results Twenty‐six children and their parental caregivers attended the complex care clinic. The number of days that children were admitted to hospital decreased from a median of 43 to 15 days, and outpatient visits increased from 2 to 8. Mean standardized scores on the SF‐36 increased (improved) for three domains related to mental health. A total of 24 PCPs responded to the questionnaire (92% response); most found the clinic helpful for MCFC and their families. Parents reported improvements in continuity of care, family‐centredness of care, comprehensiveness and thoroughness of care, but still experienced frustrations with access to services and miscommunication with the team. Conclusion A collaborative medical home focused on integrating community‐ and hospital‐based services for MCFC is a promising service delivery model for future controlled evaluative studies.     

Do older parents’ assistance needs deter parent-child geographic divergence in Norway?

The role of intergenerational geographic proximity in individuals' migration decisions has been well-established. The circumstances under which parents and their adult children move away from or remain close to each other are, however, less clear. Drawing on Norwegian register data for 2014–2016 and three-level logistic regression models, we examine whether formal care needs of older parents (aged ≥65) deter parent-child geographic divergence and whether variation in the likelihood of divergence is associated with municipal-level characteristics. After accounting for location-specific capital and parents' and children's sociodemographic characteristics, parents and children were less likely to diverge after the onset of parental care needs. Utilising in-home nursing decreased the likelihood of divergence for mothers while utilising institutionalised care decreased the likelihood of divergence for fathers. The use of in-home nursing care among single mothers further reduced the likelihood of divergence. Parents and adult children living in central areas were the least likely to diverge geographically. The likelihood of intergenerational divergence was lower for fathers and children living in municipalities with high healthcare spending.     

Clinical practice standards and ethical issues applied to a virtual group intervention for spousal caregivers of people with Alzheimer's

Advances in technology have improved access to health and social services by offering more abundant and convenient choices for clients. In particular, the use of technology for delivering services to older adults and their families offers new possibilities for service delivery, by reaching people who are often isolated, and have difficulty accessing traditional services. Despite the continued advances in technology development and its integration into healthcare delivery, health care practitioners need to consider how to adapt and uphold clinical practice standards and address ethical issues in an e-health environment. Given the gap in the literature with respect to discussing these issues, this paper illustrates relevant issues in the context of developing and evaluating an Internet-based intervention for spousal caregivers of persons with dementia. Based on a four year project, a psychotherapeutic group intervention was delivered via the Internet to three groups of spousal caregivers. This article identifies some of the key practice standards and ethical issues that arise when using computer technology to deliver a psychotherapeutic group intervention. The article will also provide examples of relevant issues related to maintaining practice standards and ethical procedures that need to be addressed during the application of a computer-based psychotherapeutic group intervention for spousal caregivers of people with dementia.     

Desire to Institutionalize a Relative With Dementia: Quality of Premorbid Relationship and Caregiver Gender

The quality of the relationship between individuals with dementia and their family caregivers has an impact on important clinical outcomes for both. It is unclear, however, how quality of relationship (QoR) affects caregivers' desire to place their relative in a nursing home. We examined the association of QoR with caregivers' desire to institutionalize (DTI), using a sample of 237 male and female caregivers of community‐dwelling individuals with dementia. Findings revealed an interaction between QoR and caregiver gender, with stronger DTI significantly associated with lower QoR for male but not female caregivers. Health care providers should recognize poor QoR as a risk factor for institutionalization, especially among male caregivers.     

Levers and barriers to patient-centred care with children: findings from a synthesis of studies of the experiences of children living with type 1 diabetes or asthma

Background The last 50 years have seen a sea change in approaches to health care with children, from a time when children were routinely separated from parents while in hospital, to current recognition of the importance of placing the experiences of children and their families at the heart of care. Yet, there is a gap in the evidence about how children's involvement might be best achieved.This study aimed to synthesize findings of children's experiences of long‐term illness and, from this, to identify levers and barriers to patient‐centred care with children. Methods A synthesis of studies of the experiences of children living with type 1 diabetes or asthma. Data sources Eight health and social care databases, bibliography searches and consultation with field experts and first authors of included studies. Eligibility criteria Qualitative studies with children 10 years (mean) and younger on their experiences of living with type 1 diabetes or asthma. Main results Findings suggest key ‘levers’ to patient‐centred care with children include: (1) engagement with children's expertise about their own lives: their personal and social experiences of their care, including how these are affected by their relative lack of power in some settings; (2) exploring children's understandings and preferences in terms of their physical sensations and day‐to‐day experiences; (3) willingness to find resources to engage with even the youngest children; (4) avoiding age‐based assumptions about children's contributions to their care. Discussion and conclusions Action on the above ‘levers’ may present a range of challenges in healthcare settings not least because it represents a move away from medicine's historical focus on children's developing competencies to engage rather with children's social realities from the earliest ages.     

A View of the Professional Nurse

The author's purpose in this study was to examine whether children's hospitals treat more resource-intense children within their communities than do general acute-care hospitals in the same communities, and then to examine which general acute-care hospitals in communities without children's hospitals fill the role of caring for very sick children. In large communities without children's hospitals, at least one general hospital is likely to treat resource-intense children. Healthcare managers in community hospitals need to be prepared to meet the healthcare needs of resource-intense children, which includes having the appropriate specialized staff and technology to care for the sickest children.     

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.     

Clinical Practice Standards and Ethical Issues Applied to a Virtual Group Intervention for Spousal Caregivers of People with Alzheimer's

Abstract

Advances in technology have improved access to health and social services by offering more abundant and convenient choices for clients. In particular, the use of technology for delivering services to older adults and their families offers new possibilities for service delivery, by reaching people who are often isolated, and have difficulty accessing traditional services. Despite the continued advances in technology development and its integration into healthcare delivery, health care practitioners need to consider how to adapt and uphold clinical practice standards and address ethical issues in an e-health environment. Given the gap in the literature with respect to discussing these issues, this paper illustrates relevant issues in the context of developing and evaluating an Internet-based intervention for spousal caregivers of persons with dementia. Based on a four year project, a psychotherapeutic group intervention was delivered via the Internet to three groups of spousal caregivers. This article identifies some of the key practice standards and ethical issues that arise when using computer technology to deliver a psychotherapeutic group intervention. The article will also provide examples of relevant issues related to maintaining practice standards and ethical procedures that need to be addressed during the application of a computer-based psychotherapeutic group intervention for spousal caregivers of people with dementia.     

Modeling caregivers' perceptions of children's need for formal care: physical function, intellectual disability, and behavior

BackgroundLike most caregivers, informal caregivers for children (typically parents) with special needs supply the majority of the care provided. Formal care is sometimes needed to supplement informal caregivers' efforts. For those interested in children with special needs, there is a paucity of research on those factors affecting the amount of formal care that caregivers' request.Objectives/HypothesesThis research investigates factors affecting the amount of Medicaid personal care services (PCS) requested by primary caregivers for children with special needs. The research focuses especially on the roles played by the child's functional status, intellectual abilities, and behaviors in determining the level of assistance requested by caregivers.MethodsThe data used in this research are cross-sectional information on 262 children with special needs who were Medicaid recipients in a single southwestern state. These data were collected in 2007 by master's trained social workers or registered nurses using a standardized assessment instrument.ResultsThe results indicate that a child's ability to independently perform activities of daily living (ADLs) tasks plays the major role in determining caregivers' perceptions of the need for PCS. The severity of a child's intellectual disability, like some other factors investigated, has an effect on caregivers' perceptions, but it is an indirect effect that operates through the level of the child's ADL impairment. A child's age and behaviors have direct effects on caregivers' perceptions of need, as does the presence of barriers to the caregiver providing care.DiscussionMuch of the research on children with special needs has emphasized the importance of the child's medical or behavioral diagnoses. Little attention has been given to modeling caregivers' perceptions of children's needs. This analysis of caregivers' requests for formal PCS brings to the forefront the role of ADL or functional status in this process. Many factors that one would expect to directly affect caregivers' perceptions of need, instead, have indirect effects filtered through their impact on the child's functional status.