Relationships and burden: An empirical‐ethical investigation of lived experience in home nursing arrangements

Quantitative research has called attention to the burden associated with informal caregiving in home nursing arrangements. Less emphasis has been placed, however, on care recipients’ subjective feelings of being a burden and on caregivers’ willingness to carry the burden in home care. This article uses empirical material from semi‐structured interviews conducted with older people affected by multiple chronic conditions and in need of long‐term home care, and with informal and professional caregivers, as two groups of relevant others. The high burden of home‐care arrangements is unanimously stressed by all three groups involved in the triangle of care. An empirical‐ethical investigation of what can be legitimately expected from family members and informal caregivers, informed by Frith's symbiotic empirical ethics approach, was undertaken. Key tenets from the special goods theory and nursing professionalism are used as analytical tools. The study concludes that the current situation may hinder professional development and can reinforce feelings of being a burden to relevant others.     

Experiences and perceptions of oral health and oral health care among a sample of older New Zealanders

doi: 10.1111/j.1741‐2358.2010.00402.x Experiences and perceptions of oral health and oral health care among a sample of older New Zealanders Background: Most research on older people’s oral health has been quantitative. A need for more in‐depth understanding of the oral health of that age group has pointed to a need for more qualitative investigations. Objective: To explore experiences and perceptions of oral health and oral health care among an ethnically‐mixed sample of older New Zealanders. Methods: In‐depth interviews were conducted with 24 older people in two communities in New Zealand’s South Island. Thematic analysis of transcribed data was undertaken. Results: Three main themes that emerged were: (1) the processes of negotiating a tension between cost and convenience of access; (2) the experiential constraining of oral health maintenance; and (3) trusting in dental professionals. These serve to organise processes such as normalising, justifying and social comparisons that create an equilibrium or tolerance and acceptance of what might otherwise be considered to be relatively poor oral health. Conclusions: We identified a number of shared experiences which affect older people’s ability to maintain their oral health in the face of material and social barriers to oral health care. Because expectations were generally lower, there was greater concordance between experience and expectation, and people tended to be fairly satisfied with their oral health and the care they had received.     

Family composition and the characteristics of parental care during the nursing phase of captive common marmosets (Callithrix jacchus)

Cooperative care of the young by the father, older siblings, and unrelated group members is observed in a number of species, but inCallithrix jacchus parental care by the father is considered to be part of the reproductive behavior of the species. Nevertheless, the way the presence of potential helpers influences the costs of caring for the parents is not well understood. In this study we describe the suckling phase of youngC. jacchus, in families with and without older siblings, assessing the effect of siblings on the amount of care given by the father and mother. Six family groups were observed: three consisting of the mated pair and two newborn infants, and three with one or two additional sub-adult siblings. Our results suggest that the presence of older siblings as helpers affects the parents' participation in caregiving by altering maternal investment through the control of nursing and by reducing the costs of carrying for the father.     

北京某三级甲等医院ICU 患者家属满意度调查研究

目的:了解ICU患者家属对现有医疗护理服务质量的满意程度,为今后医疗护理服务质量的改善提供科学的依据。方法:采用Wasser的"危重患者家属满意度量表"中文版对符合入选标准的危重患者家属进行问卷调查。运用SPSS17.0进行统计分析。结果:共145名ICU患者家属完成问卷,其中男性83名,女性62名。危重患者家属满意度量表总得分很高(91±9),五个因子得分从高到低依次是舒适(5±0.50)、病情保证(4.75±0.625)、获得支持(4.67±0.50)、获取信息(4.40±0.60)和接近患者(4.33±0.67);其中满意度最高的一项"护士护理病人的质量情况",满意率高达100%;满意度最低的一项是"探视时间的弹性"。结论:ICU患者家属对现有医疗护理服务质量具有较高的满意度;更好的提高ICU患者家属满意度,改善医疗护理质量,需加强医务人员与家属的沟通,增进医护间的合作。     

Understanding the ‘epidemic’ of complete tooth loss among older New Zealanders

doi:10.1111/j.1741‐2358.2009.00306.x
Understanding the ‘epidemic’ of complete tooth loss among older New Zealanders Objective: The aim of this study was to obtain a deeper understanding of the social factors driving New Zealand’s historic ‘epidemic of edentulism’ and how they operated. Method: In‐depth, semi‐structured interviews with 31 older New Zealanders were analysed using applied grounded theory. Results: Universal factors present in the data were: (a) the way in which New Zealand society accepted and indeed encouraged edentulism without stigma for those who had a ‘sub‐optimal’ natural dentition; (b) how the predominant patterns of dental care utilisation (symptomatic and extraction‐based) were often strongly influenced by economic and social disadvantage; and (c) the way in which lay and professional worldviews relating to ‘calcium theory’ and dental caries were fundamental in decisions relating to the transition to edentulism. Major influences were rural isolation, the importance of professional authority and how patient‐initiated transitions to edentulism were ultimately facilitated by an accommodating profession. Conclusion: The combined effects of geography, economics, the dental care system and the professional culture of the day, in the context of contemporary (flawed) understandings of oral disease, appear to have been the key drivers. These were supported (in turn) by a widespread acceptance by the profession and society alike of the extraction/denture philosophy in dealing with oral disease.     

Informing the debate on oral health care for older people: a qualitative study of older people’s views on oral health and oral health care

doi: 10.1111/j.1741‐2358.2009.00274.x
Informing the debate on oral health care for older people: a qualitative study of older people’s views on oral health and oral health care Background: Older people represent a growing and diverse section of the population. As age increases, people are more likely to experience health and mobility problems and be at higher risk of developing oral disease. Nevertheless, few older people utilise primary oral healthcare services. It is therefore important to understand the value older people place on oral health and dental services to inform providers and planners of oral health care. This research was conducted as part of a study to identify potential ways of minimising barriers to oral health care in older people. Objectives: To explore perceptions of oral health and oral healthcare services amongst older people living in a socially deprived inner city area and how these are related to service utilisation. Methods: A qualitative approach was utilised to explore the range of issues related to older people’s perceptions of oral health and their views on health care. This involved a combination of focus groups and semi‐structured individual interviews with older people and their carers. Data analysis was conducted using the Framework approach. Results:

• ? Response: Thirty‐nine older people and/or their carers participated in focus groups.
• ? Oral health perception: Oral health was associated with the presence of natural teeth, the absence of pain, practical/social functioning, preferably supported by positive assessment by a dentist.
• ? Oral health life‐course: Older people have a long and complex dental history. Past negative experiences with oral health care, especially in childhood, strongly influenced present attitudes towards dentistry and dental personnel.
• ? Citizenship and right to health care: There was a strong perception that, as ‘British citizens’, older people should have a right to free health care and that the National Health Service (NHS) should support them in this phase of their life.

Conclusions: The oral health life‐course of older people is an important influence on their perceptions of oral health and dental attendance. They consider oral health of importance and place great emphasis on their citizenship and rights of access to state funded oral health care. This raises important issues for the funding and delivery of NHS oral health care for older people.     

Standardised measures of needs,stigma and informal care in schizophrenia using a bottom-up,cross-cultural approach

Background There is a lack of instruments to measure the needs, stigma and informal care of people with schizophrenia that take account of sociocultural variation and patients'' and formal and informal carers'' opinions and experiences.Aims To develop questionnaires to measure stigma, needs and informal (non-professional) care for people with schizophrenia.Method We undertook the study in seven countries and in English, Spanish and Portuguese. We first held focus group discussions with patients, formal carers (professionals) and informal carers (family and friends) in Spain, the UK, Argentina, Brazil, Chile and Venezuela to elicit the main dimensions of needs, stigma and informal care. We then held nominal group discussions about these dimensions with patients, family members and professionals in Spain, Portugal and the UK, to develop the instruments.Results Three hundred and three people participated in 46 focus groups and results were discussed in three nominal groups, each involving eight participants. Three instruments were developed in this iterative process: needs for care (46 items), stigma (38 items) and informal care (20 items).Conclusions These instruments are based on service users'' and carers'' views and experiences and have cross-cultural validity. They will have application in assessment of outcomes for people with schizophrenia and their families.     

What is the role of family in promoting faecal occult blood test screening? Exploring physician,average-risk individual,and family perceptions

Background: Although the number of Canadians being screened for colon cancer is rising, only 40% of Canadians aged 50 years or older reported they had engaged in faecal occult blood test (FOBT) screening as recommended. The notion of ‘partnerships’ that is inclusive of physicians, individuals at average-risk for colorectal cancer, and influential family members is receiving more attention in primary health care literature and policy on promoting health maintenance behaviours. To the best of our knowledge there are no studies that have taken a tripartite approach in describing perspectives of these three key stakeholders on the role of family in promoting adherence to FOBT. The aim of this study was to address the gap in understanding the perspectives of primary care physicians, individuals at average-risk for colorectal cancer, and family on family role in promoting adherence to FOBT screening. Method: We employed a qualitative design and conducted semi-structured interviews with 15 physicians, 27 patients at average-risk for colorectal cancer, and 19 family members or friends from urban and rural Manitoba, Canada between October 2008 and March 2010. Interviews were audio-recorded, transcribed verbatim, and analysed using content analysis and constant comparative techniques. Results: While physicians described a clear role for family in managing chronic disease or dealing with acute or serious illness, they identified barriers in working with family to promote FOBT screening: lack of time, privacy and confidentiality concerns, and family dynamics. Conversely, patients and family described instrumental, emotional, informational, and appraisal roles that family play in promoting FOBT outside medical encounters. Conclusion: Adherence to colorectal cancer screening is based on supportive ‘patient–physician’ dialogue that is separate from assistive ‘patient–family member’ relations. Further research is required to explore social support mechanisms involving family members outside medical encounters that hold promise in boosting self-efficacy, overcoming barriers, and gaining positive reinforcement for individuals at average-risk when making the decision to engage in FOBT.     

Oral health care in long‐term care facilities for elderly people in southern Brazil: a conceptual framework

doi:10.1111/j.1741‐2358.2009.00280.x
Oral health care in long‐term care facilities for elderly people in southern Brazil: a conceptual framework Objective: To present a theoretical model for understanding oral health care for the elderly in the context of long‐term care institutions (LTCI). Methods: Open‐ended individual interviews were conducted with the elderly residing in LTCI, their carers, nursing technicians and nurses, directors of care, dental surgeons and managers of public health services. A grounded theory methodological approach was adopted for data collection and analysis. Results: The emerging core category revealed a basic social process: ‘Promoting oral health care for the elderly based on the context of LTCI’. This process was composed of two contradicting yet correlated aspects: the oral health care does not minimise the poor oral epidemiological condition, and at the same time, there was a continued improvement in the oral care expressed by better care practices. These aspects were related to the: attribution of meaning to oral health, social determination of oral health, the ageing process, interactions established in the oral health care practices, oral health care management in LTCI, inclusion of oral health care into the political–organisational dimension and possibility of conjecturing better oral health care practices. Conclusion: The core concept of ‘Promotion of oral health care for elderly people based on the context of LTCI’ is capable of explaining the variations in the structure and process of LTCI, as well as in helping to understand the meaning of the oral health care practices for the institutionalised elderly.     

WHAT IS IT TO BE A DAUGHTER? IDENTITIES UNDER PRESSURE IN DEMENTIA CARE

This article concentrates on the care for people who suffer from progressive dementia. Dementia has a great impact on a person’s well‐being as well as on his or her social environment. Dealing with dementia raises moral issues and challenges for participants, especially for family members. One of the moral issues in the care for people with dementia is centred on responsibilities; how do people conceive and determine their responsibilities towards one another? To investigate this issue we use the theoretical perspective of Margaret Walker. She states that ideas about identity play a crucial role in patterns of normative expectations with regard to the distribution of responsibilities in daily practices of care. The results of this study show how the identity of a family‐member is put under pressure and changes during her loved one’s illness that leads to difficulties and misunderstandings concerning the issue of responsibility. These results offer an insight into the complexities of actual practices of responsibility and highlight the importance for those caring for people with dementia of attending carefully to how they see themselves and how they see other people involved (Who am I? Who do I want to be for the other?). Answers to such questions show what people expect from themselves and from one another, and how they, at any rate, are distributing responsibilities in a given situation. Professional caregivers should take into account that family members might have different ideas about who they are and consequently about what their responsibilities are.     

Developing new hospital-at-home models based on Comprehensive Geriatric Assessment: Implementation recommendations by the Working Group on Hospital-at-Home and Community Geriatrics of the Catalan Society of Geriatrics and Gerontology

Last decade, the Government of Catalonia have urged an integrated care strategy for planning the care model to older populations living with frailty, multimorbidity and advanced illnesses. Based on international evidence that was reviewed by a group of experts from the Catalan Society of Gerontology and Geriatrics, we summarised some recommendation to adapt hospital-at-home care to older populations in our system. We defined Comprehensive Geriatric Assessment (CGA) hospital-at-home (HaH) as a specialised home hospitalisation service formed by interdisciplinary teams, characterised by using the clinical methodology of CGA, and by adapting geriatric units’ protocols for the provision of person-centred care at home. Main benefits of CGA-HaH in these populations are: response to heath crises according to individualised care plans based on the situational diagnosis carried out by Primary Care teams; provision of a comprehensive health and social approach tailored to the complexity of cases and situations; and adaptation of multipurpose hospitalisation, by working on different person-centred care, aspects, such as caregivers support on care provision, focusing on function or home adaptation.     

Social ties at work: Roma migrants and the community dynamics

This research examines how the internal social dynamics of Roma communities at home shape their propensity to migrate. It is theoretically grounded in the literature on social capital and focuses on two core concepts: ‘migration-rich’ and ‘migration-poor’ communities. The research is based on in-depth interviews and informal discussions with Roma from six (mainly rural) communities of Transylvania (Romania) and includes qualitative data gathered from migrants as well as from people who did not migrate. The findings challenge existing conceptualizations of Roma migration as either explained by poverty alone or by cultural arguments (such as nomadism). This paper indicates that even in the context of severe poverty, social networks are actually decisive for migration. It demonstrates that the patterns of migration tend to be community-specific and shaped by a locally shared culture (ethos) on migration. The research suggests policy choices according to the community profile and its internal dynamics.     

Scaling Humanitarianism: Humanitarian Actions in a Bosnian Town

Through an ethnographic focus on humanitarne akcije in Bosnia and Herzegovina – a local form of raising monetary donations to people who need medical treatments abroad – this paper explores humanitarianism and its understandings of life. Ethnographically tracking the course of a humanitarna akcija organised in one Bosnian town, this paper makes two related points. First, it ethnographically demonstrates that lives of the ‘helpers’ and ‘helped’ in humanitarne akcije were understood as immersed in the intense talk and gossip of the town and as exposed to the sociopolitical environment troubled in the same way. Comparing this understanding of life with the international humanitarianism, this paper suggests that the notion of ‘bare life’ in international humanitarian projects in emergencies may be the product of the separation of infrastructures, which enable and manage lives of the ‘savers’ and ‘saved’. Second, those who needed help through humanitarne akcije strongly criticised the lack of organised health care and social security in Bosnia and Herzegovina that pushed them to initiate humanitarne akcije. They criticised less how other people perceived them (the terms of their sociocultural recognition) and more the shrinking public health-care insurance, unavailability of medical treatments, unequal allocation of medicines, tissues and organs, and so forth (the unjust redistribution of resources). Their dissatisfactions imply that humanitarianism as an industry of aid can be criticised for failing to intervene in the global regimes of unequal redistribution of resources in a transformative way.     

How primary health care professionals and residents assess issues related to the oral health of older persons?

doi: 10.1111/j.1741‐2358.2009.00355.x
How primary health care professionals and residents assess issues related to the oral health of older persons? Background and objectives: It is known that older persons need integrated primary health care. However, oral health may not be a frequent concern of multi‐professional teams taking care of older persons. The aim of the present study was to evaluate knowledge and practices related to oral health care, as reported by professionals and residents in a primary health care service. Material and methods: One hundred and seventy‐three health professionals and residents were assessed in this cross‐sectional study by means of a structured questionnaire containing questions pertaining to oral health practices and beliefs. Participants were grouped based on their professions into “primary health care dentists” or “other primary health care professionals” and based on their working status into “permanent team” or “residents”. Results: Permanent team members (other professionals) assessed and recommended dental care more frequently than residents. Permanent team members (other professionals) also reported that they felt they were able to inform older patients in respect to oral health‐related issues more frequently than did residents (68.7% vs. 31.3%, respectively). Conclusion: Oral health‐related knowledge and beliefs were frequent among non‐dentists primary health care workers, suggesting that primary health care which integrates oral health represents an attainable goal.     

Founders,ancestors, and enemies: memory,family, time,and space in the Pernambuco sertão

This article concerns the use of narrative and genealogical frameworks among sertanejos, the inhabitants of the hinterlands (sertão) of Pernambuco in the Northeast of Brazil, in the process of grouping and differentiating families. It explores how accounts produced by different people are linked by shared memories of past conflicts – such as cangaço and questões de família (lit. ‘family issues’). Through conceived and lived relationships among relatives and the correlated concepts of ‘blood’ and ‘race’ current in this social formation, I look to identify the different meanings attributed to time and space, inscribed in the collective memory, and implicated in the moving configurations of ‘family’ in a cognatic universe.     

Symposium De toekomst van de informele zorg

Due to the reform of long term care in 2015, there is growing concern about whether groups at risk receive the care they need. People in need of care have to rely more on help from their social network. The increased need for informal care requires resilience and organizational skills of families, but also of volunteers, professionals and employers. What does this mean for the provision of informal care in the next decennia? The symposium ‘The future of informal care’, organized on January 26 2017 by the National Institute for Social Research and the Institute for Societal Resilience of the Vrije Universiteit, addressed possible answers to this question. In her inaugural speech Alice de Boer discussed social inequality as possible determinant and outcome of informal care. Some conclusions:Until 2050 the absolute number of 75-plus doubled to about 3 million persons, but the number of informal caregivers will decrease. In addition to the importance of social and economic resources (the ‘have & have-nots’), the ability to arrange care (the ‘can & can-nots’) gains importance.Almost half of the older employers provides informal care just before retirement. Flexibility in working hours and work location facilitates combining work and care, but about half of the employers indicates that partial retirement and working at home are no options.Informal caregivers and professionals often provide care from comparable perspectives and identities. Addressing similarities rather than differences improves their chances for collaboration.The number of adult children providing household care to older parents increased between 2002 and 2014. This suggests an increase in family solidarity, but current reform policies may increase the gender inequality in caregiving families.Spouses and children remain primary caregivers in the future, preferably supported by many different types of caregivers. Not everybody has the capabilities to organize and direct such a large care network.Providing informal care increases the risk for overburden and absence at work or education. Informal caregivers at risk remain, also in the future, women, spouses, migrants, and younger carers.     

Si Dios Quiere: Hispanic families' experiences of caring for a seriously mentally ill family member

Among Hispanics, the family is viewed as the primary care giver for seriously mentally ill family members. This paper reports on a study of minority families' conceptions of serious mental illness, of their interaction with mental health resources, and on the burdens experienced by families in caring for a seriously mentally ill family member. The focus of this paper is on Hispanic families in New Jersey, with some comparative data from other ethnic group families. Families' conceptions of serious mental illness are explored and analyzed to demonstrate the importance of concepts of nervios and fallo mental in shaping families' responses to their ill family member. Social support systems for families are also explored with particular attention to the role of religious institutions and religious healing as a major source of solace.     

Health care professionals' perspectives on oral care for long-term care residents: nursing staff, speech-language pathologists and dental hygienists

doi: 10.1111/j.1741‐2358.2011.00513.x Health care professionals’ perspectives on oral care for long‐term care residents: Nursing staff, speech–language pathologists and dental hygienists Background: Oral health has been identified as a key factor in general health and systemic disease in long‐term care populations. To optimise oral health of this population, it is important to understand the oral care perspectives held by health care professionals involved in oral care provision. Objectives: To explore perspectives regarding oral care held by nursing staff, speech–language pathologists (SLPs) and dental hygienists (DHs) in long‐term care institutions and to understand how their perspectives impact activities and processes involved in the delivery of oral care. Methods: A focus group methodology was utilised. Separate focus groups for each targeted profession were held. Transcribed data were analysed using constant comparative analysis. Results: Daily oral health maintenance and monitoring was considered a role of nursing staff. SLPs and DHs have roles focusing on advocacy, education and supplemental care. Social factors motivate nursing staff to provide oral care, whereas factors related to the general health consequences of poor oral health underlined the motivations of SLPs and DHs. Conclusions: Education and training initiatives incorporating social aspects of oral health may be more effective for motivating nursing staff than approaches emphasising physical risk factors. Organisations can foster environments that support collaboration and communication amongst the members of multidisciplinary teams in order to promote oral health as a priority.     

Social dynamics and individual plasticity of infant care behavior in cooperatively breeding cotton‐top tamarins

Individual variation in infant caretaking behavior is prevalent among marmoset and tamarin monkeys. Although most group members participate in infant care, the timing and amount provided differs greatly. In this study, we quantified general trends in infant carrying behavior by using a longitudinal database that included 11 years of instantaneous scan observations following 80 births of cotton‐top tamarins. Using detailed focal observations on a subset of the same families (10 births) we identified influences that affected expression of infant care at the group and individual levels. Fathers were the primary carriers and paternal carry time gradually decreased with increasing infant age. Paternal carry time also decreased significantly with an increasing number of older sibling helpers. Most fathers began to carry on the first day postpartum. However, we report circumstances in which fathers delayed carrying until almost a month postpartum. Fathers retrieved infants the most, although adult brothers' rates of retrievals peaked and surpassed fathers' rates during week 4 postpartum. Fathers delayed rejection of infants until week 4, whereas mothers rejected infants immediately and throughout the eight weeks. Nonetheless, infants climbed onto their mothers more than onto any other family member. Mothers showed a high initial investment in carrying during the first two weeks, decreasing quickly thereafter. Maternal contributions to infant carrying remained low and relatively consistent regardless of group size. However, mothers dramatically increased their infant carrying behavior in families in which fathers were absent. Older siblings cared for infants more than did younger siblings, and brothers retrieved and carried infants more than did sisters. Individual expression of infant care changed to accommodate infant needs and changed according to varying social dynamics and circumstances across litters. Am. J. Primatol. 72:296–306, 2010. © 2009 Wiley‐Liss, Inc.     

A comparative perspective on the evolution of tamarin and marmoset social systems

Tamarins and marmosets (callitrichids) present an unusual opportunity for study of the determinants of primate social systems, because both the mating and infant care patterns of callitrichids are variable, even within individual populations. In this paper, I briefly describe three characteristics of callitrichid social systems that distinguish them from most other primates: extensive male parental care, helping by nonreproductive individuals, and variable mating patterns. I then discuss the evolution of these characteristics and of the frequent twinning exhibited by callitrichids. I suggest that an ancestor of modern callitrichids gave birth to a single offspring at a time, mated monogamously, and had significant paternal care. The idea that males of this ancestral form must have provided paternal care, even though only single infants were born, derives from a comparison of litter/mother weight ratios in modern primate species. Twinning perhaps then evolved because of a combination of dwarfing in the callitrichid lineage, leading to higher litter/mother weight ratios, and a high infant mortality rate, and because the extensive paternal care already present facilitated the raising of twins. I propose that the helping behavior of older offspring may have coevolved with twinning, because helpers would have increased the chances of survival of twins, and the presence of twins would have increased the benefits of helping. Finally, the high costs of raising twins and the variability of group compositions, especially the fact that some groups would not have had older offspring to serve as helpers, may have selected for facultative polyandry in saddle-back tamarins (Saguinus fuscicollis) and perhaps in other callitrichid species. Both helping and cooperative polyandry have been extensively studied in bird species, and I apply some of the conclusions of these studies to the discussion of the evolution of callitrichid social systems.