BACKGROUND: A key role of nurses working in long-term care homes (LTCHs) is to promote the involvement of care partners in end-of-life (EOL) care. However, studies on the involvement of care partners in EOL care in LTCHs have focused on care planning and decision-making. While care partners can participate in other ways, it\'s unclear how they are currently involved in EOL care by staff.
OBJECTIVE: We aimed to explore the involvement of care partners in the EOL care of an older adult living in a LTCH.
METHODS: A qualitative case study was conducted. Data was collected from a sample of four nurses and three care partners, using sociodemographic questionnaires, individual semi-structured interviews, documents pertaining to the LTCH\'s philosophy for EOL care, and a field diary.
RESULTS: The results of a thematic analysis showed the broad scope of care partners\' possible involvement, including contributing to care, obtaining information, and being present. As there was some variation in care partners\' desire to be involved, nurses seemed to rely on them to convey their wishes. To promote this involvement, some strategies aimed at health professionals and managers were suggested.
CONCLUSIONS: These results can guide improvement in clinical practices and raise awareness on the EOL care experiences of care partners.

OBJECTIVE: The study aimed to characterize the experiences of primary caregivers of children with medical complexity (CMC) in engaging with other members of the child\'s caregiving network, thereby informing the design of health information technology (IT) for the caregiving network. Caregiving networks include friends, family, community members, and other trusted individuals who provide resources, information, health, or childcare.
METHODS: We performed a secondary analysis of two qualitative studies. Primary studies conducted semi-structured interviews (n = 50) with family caregivers of CMC. Interviews were held in the Midwest (n = 30) and the mid-Atlantic region (n = 20). Interviews were transcribed verbatim for thematic analysis. Emergent themes were mapped to implications for the design of future health IT.
RESULTS: Thematic analysis identified 8 themes characterizing a wide range of primary caregivers\' experiences in constructing, managing, and ensuring high-quality care delivery across the caregiving network.
CONCLUSIONS: Findings evidence a critical need to create flexible and customizable tools designed to support hiring/training processes, coordinating daily care across the caregiving network, communicating changing needs and care updates across the caregiving network, and creating contingency plans for instances where caregivers are unavailable to provide care to the CMC. Informaticists should additionally design accessible platforms that allow primary caregivers to connect with and learn from other caregivers while minimizing exposure to sensitive or emotional content as indicated by the user.
CONCLUSIONS: This article contributes to the design of health IT for CMC caregiving networks by uncovering previously underrecognized needs and experiences of CMC primary caregivers and drawing direct connections to design implications.

Supportive measures and training interventions can improve the care of people with dementia and reduce the burden on informal caregivers, whose needs remain largely unmet. iSupport is an evidence-based online intervention developed by the World Health Organization to provide support and self-guided education to informal family caregivers of people with dementia. This qualitative study explored barriers and facilitators in the access and use of supportive measures for family caregivers of people with dementia living in Southern Switzerland (Ticino). We conducted five focus groups and explored experiences, beliefs, and attitudes toward seeking help (SH), and used thematic analysis to identify key themes. Participants (N = 13) reported a general reluctance to SH. We identified four main barriers to SH: high level of burden; sense of duty; fear of being misunderstood by others; and difficulty in reaching information. We also identified facilitators of help seeking behaviors and unveiled the need of caregivers to be assisted by a dementia case manager to facilitate access to support resources. Local services and interventions should be adapted to caregivers\' needs and expectations, with the aim of facilitating the acceptance of, access to, and service integration of existing and future support measures, including iSupport.

UNASSIGNED: The incidents of Head and Neck Cancer (HNC) are rising worldwide, suggesting that this type of cancer is becoming more common. The foreseen growth of incidents signifies that future rehabilitation services will have to meet the needs of a wider population.
UNASSIGNED: The aim of this paper is to explore the needs of patients, caregivers and healthcare professionals during HNC rehabilitation.
UNASSIGNED: This paper reports the empirical findings from a case study that was conducted in a cancer rehabilitation center in Copenhagen to elicit the needs of HNC cancer patients, informal caregivers and healthcare professionals.
UNASSIGNED: Four areas of needs during the rehabilitation process were identified: service delivery, emotional, social and physical needs. Service delivery needs and emotional needs have been identified as the most prevalent.
UNASSIGNED: Stakeholders\' needs during the rehabilitation process were found to be interrelated. All stakeholders faced service delivery challenges in the form of provision and distribution of information, including responsibilities allocation between municipalities, hospitals and rehabilitation services. Emotional and social needs have been reported by HNC patients and informal caregivers, underlining the importance of inclusion of all actors in the design of future healthcare interventions. Connected Health (CH) solutions could be valuable in provision and distribution of information.

We examine the utility of individualizing activities for persons with dementia (PwD) on the basis of congruence with preferences. Previous studies demonstrated only limited evidence of individualization of activity content to improve response, tended not to consider group activities, or were inconclusive.
Participants were 90 PwD residing in a nursing home or attending a day center. After family and staff caregivers rated preferences for music, exercise, reading, brain games, and baking, group activities were conducted, and the impact on mood and engagement was monitored. We tested whether participants showed more engagement and better mood when group activities were related to topics they liked, in comparison to topics they did not like (within-person analysis), and whether persons who liked certain topics showed better outcomes in comparison to persons who did not like those topics (between-person analyses).
Within-person analysis found a relationship between the report of liking the topic and engagement and mood during the group activity, confirming the benefit of individualizing activities to persons\' preferences. Between-person analyses were statistically significant only when based on staff preference ratings.
Despite the fact that each topic represents a wide range of possible activities, individualizing group activities based on participants\' preferences can optimize the impact.

暂无摘要。

This paper focuses on the evaluation of dementia case management in the Netherlands, as well as factors associated with positive evaluations of informal caregivers. A survey was completed by 554 informal carers. The majority of the informal carers were older (69% was 55+), and female (73%), and often concerned the partner or adult children of the person with dementia. Eighty percent indicated that the contact with the case manager facilitated their role as informal carer, while 95% or more stated that the case manager showed sufficient understanding, allowed enough space to decide together on how to approach problems in the care, took time to listen to their story, gave sufficient attention to and showed interest in their relative, took their schedule into account and/or kept appointments. Contrary to the expectations, multilevel analyses did not show association between informal caregivers\' care burden and the evaluation of case management. Neither were the period living with dementia and the number of personal contacts with the case manager associated with the evaluations of informal caregivers. However, being the partner of the patient was significantly related ( p < 0.05) to a positive overall evaluation by informal carers. These results suggest that sufficient case management resources should be offered and targeted especially towards partners of people with dementia.

OBJECTIVE: To evaluate outcomes for persons with dementia and primary informal caregivers of 2 types of implemented case management (intensive case management [ICMM] and linkage [LM] models) with no case management (control group).
METHODS: A pragmatic trial using a prospective, observational, controlled, cohort study.
METHODS: Community care in the Netherlands.
METHODS: A total of 521 dyads.
METHODS: Case management provided within one care organization (ICMM), case management where multiple case management organizations are present within one region (LM), and a group with no access to case management (control).
METHODS: Neuropsychiatric problems in persons with dementia assessed by the Neuropsychiatric Inventory (NPI) and psychological health in informal caregivers as measured with the General Health Questionnaire (GHQ-12). Secondary outcomes included care and support needs, quality of life, and institutionalization. Comparability of groups at baseline was secured by inverse-propensity-score-weighted mixed models.
RESULTS: No significant differences in changes in total NPI or GHQ-12 scores between the groups over 2 years were found. Secondary outcomes showed better quality-of-life scores for informal caregivers in the ICMM than the LM. Total needs, met and unmet care needs were significantly less in the ICMM compared with the control group.
CONCLUSIONS: Neither case management type affected clinical outcomes of dyads meaningfully. The ICMM has positive impact on caregivers\' quality of life and patient\'s number of needs compared with persons in LM and persons without access to case management respectively.

OBJECTIVE: To investigate and describe the content, dissemination and effects of case management interventions for informal caregivers of older adults, focusing on outcomes related to patients\' activities of daily living, nutrition assessment, pain measurement, depression, length of stay and to caregivers\' satisfaction and difficulties.
METHODS: This systematic review was based on the Preferred Reporting Items for Systematic. Reviews and Meta-Analysis of studies that evaluate healthcare interventions (PRISMA) statement.
METHODS: PubMed, CINAHL, and EMBASE were searched in September 2013 using a two-step search strategy combining an electronic search with a search in the reference lists. The search strategy was structured using the study inclusion criteria built on PICOS.
METHODS: Studies were reviewed by title, abstract and full-text by both authors. Duplicates and studies not meeting the inclusion criteria were excluded. Data was extracted from the eligible studies using narrative synthesis. The Grading of Recommendations Assessment, Development and Evaluation (GRADE) approach was employed to rate the quality of the evidence.
RESULTS: Seven studies (5 RCTs) including a total of 6956 patients over the age of 65 and their informal caregivers (spouses, family members, and close relatives) all in community-care settings were found eligible and included in the review. The assessment for risk of bias in the seven studies indicated variations in the study quality from very low (n=4), to low (n=1) and moderate (n=2) due to lack of randomisation, blinding, transparency and not following intention to treat. A case management approach was claimed in four studies and the remaining three studies used a psycho-educational intervention with core components of case management consistent with the literature. Significant effects of case management interventions were seen on patients\' time to institutionalisation, municipal care costs and emotional health when informal caregivers were involved. A significant effect was also found on informal caregivers\' decrease in depressive symptoms over time.
CONCLUSIONS: Research of case management interventions for informal caregivers is very limited. This review identifies knowledge about case management as an intervention for informal caregivers to older patients, suggesting strengths and weaknesses for future interventions when informal caregivers are involved. PROSPERO registration: CRD42014007462.

OBJECTIVE: To explore reasons for institutionalization of people with dementia according to informal caregivers as well as variation in reasons between countries.
METHODS: An explorative cross-sectional study was conducted in 8 European countries.
METHODS: Per country, a minimum of 3 long term care facilities, offering care and accommodation as a package, participated in this study. Participating countries were selected to represent different geographic areas in Europe.
METHODS: Of the 791 informal caregivers involved in the RightTimePlaceCare project of people with dementia who were recently admitted to a long term care facility, 786 were included for this study.
METHODS: As part of a semistructured interview, informal caregivers were asked the main reason for institutionalization in an open-ended question. Answers were categorized according to a conventional coding approach. All reasons were then quantified and tested.
RESULTS: Mainly patient-related reasons were stated, such as neuropsychiatric symptoms (25%), care dependency (24%), and cognition (19%). Neuropsychiatric symptoms were among the most often mentioned reasons in most countries. Besides patient-related reasons, caregiver burden and the inability of the informal caregiver to care for the patient were stated as reasons (both 15%). Further analyses showed countries differ significantly in reasons according to informal caregivers. Additionally, reasons were analyzed for spouses and child-caregivers, showing that spouses more often stated reasons related to themselves compared with child-caregivers.
CONCLUSIONS: Multiple reasons contribute to the institutionalization for people with dementia, with several factors that may influence why there were country differences. Variation in the organization of dementia care and cultural aspects, or the relationship between the informal caregiver and person with dementia may be factors influencing the reasons. Because of a wide variation in reasons between countries, no one-size-fits-all approach can be offered to guide informal caregivers when facing the possibility of institutionalization of the person with dementia.