Evaluating satisfaction with maternity care in women from minority ethnic communities: development and validation of a Sylheti questionnaire.

OBJECTIVE: To develop a reliable and valid questionnaire to evaluate satisfaction with maternity care in Sylheti-speaking Bangladeshi women. DESIGN: Two-stage, psychometric study. Firstly, focus groups, in-depth interviews and iterative methods for translation and cultural adaptation were used to develop a Sylheti questionnaire, called the survey of Bangladeshi women's experience of maternity services from an English language questionnaire. Secondly, quantitative psychometric methods were used to field test and evaluate the acceptability, reliability and validity of this questionnaire. SETTING: Four hospitals providing maternity services in London, UK. STUDY PARTICIPANTS: Two hundred and forty-two women from the London Bangladeshi communities, who were in the antenatal (at least 4 months pregnant) or postnatal phase (up to 6 months after delivery). Women spoke Sylheti; a language with no accepted written form. Two purposive samples of 40 women in the antenatal or postnatal phase, one convenience sample of six women in the antenatal phase and three consecutve samples of 60 women in the postnatal phase participated in stage one. In stage two, 135 women (main sample) completed the questionnaire two months after delivery (82% response rate); 50 women (retest sample) from the main sample completed a second questionnaire two weeks later (96% response rate). MAIN OUTCOME MEASURES: Women's views about maternity care elicited by qualitative methods and measured quantitatively using the survey of Bangladeshi women's experience of maternity services. RESULTS: The 121-item questionnaire was acceptable to women and showed good internal consistency (Cronbach's alphas 0.76-0.91), stability (test-retest reliability 0.72-0.84) and construct validity (e.g. able to detect group differences). CONCLUSION: By combining qualitative and quantitative methods, it is possible to adapt an instrument to provide an acceptable, reliable and valid Sylheti questionnaire. The approach taken in developing this questonnaire provides a model for developing outcome measures for use with other minority ethnic communities.     

Assessing satisfaction with social care services among black and minority ethnic and white British carers of stroke survivors in England

Overall satisfaction levels with social care are usually high but lower levels have been reported among black and minority ethnic (BME) service users in England. Reasons for this are poorly understood. This qualitative study therefore explored satisfaction with services among informal carer participants from five different ethnic groups. Fifty‐seven carers (black Caribbean, black African, Asian Indian, Asian Pakistani and white British) were recruited from voluntary sector organisations and a local hospital in England, and took part in semi‐structured interviews using cognitive interviewing and the critical incident technique. Interviews took place from summer 2013 to spring 2014. Thematic analysis of the interviews showed that participants often struggled to identify specific ‘incidents’, especially satisfactory ones. When describing satisfactory services, participants talked mostly about specific individuals and relationships. Unsatisfactory experiences centred on services overall. When rating services using cognitive interviewing, explicit comparisons with expectations or experiences with other services were common. Highest satisfaction ratings tended to be justified by positive personal characteristics among practitioners, trust and relationships. Lower level ratings were mostly explained by inconsistency in services, insufficient or poor care. Lowest level ratings were rare. Overall, few differences between ethnic groups were identified, although white British participants rated services higher overall giving more top ratings. White British participants also frequently took a more overall view of services, highlighting some concerns but still giving top ratings, while South Asian carers in particular focused on negative aspects of services. Together these methods provide insight into what participants mean by satisfactory and unsatisfactory services. Cognitive interviewing was more challenging for some BME participants, possibly a reflection of the meaningfulness of the concept of service satisfaction to them. Future research should include comparisons between BME and white participants’ understanding of the most positive parts of satisfaction scales and should focus on dissatisfied participants.     

The role of identity in the experiences of dementia care workers from a minority ethnic background during the COVID-19 pandemic: A qualitative study

Background

Care home staff working during the COVID-19 pandemic experienced higher levels of stress and increased workloads. People from diverse ethnic backgrounds were disproportionately affected by the COVID-19 pandemic. This study explored the identity experiences of care home staff from diverse ethnic backgrounds in the context of working during the COVID-19 pandemic.

Methods

Fourteen semistructured interviews were conducted between May 2021 and April 2022 with ethnic minority care home staff in England, who worked during the pandemic. Participants were recruited using convenience and theoretical sampling. Interviews were conducted via telephone or online platforms. A social constructivist grounded theory methodology was utilised in analysing the data.

Findings

Participants described five key processes which facilitated or hindered the impact that their experiences had on their identity: dealing with uncertainty and transitioning into a COVID-19 world; difficult emotions; experiences of discrimination and racism; the response from the care home and societal systems; and the personal vs collective responsibility. When participants' physical and psychological needs went unmet by support structures within the care home and/or society, they experienced a sense of injustice, lack of control and being unvalued or discriminated against by others.

Conclusions

This study highlights the importance of recognising the unique needs of staff from diverse ethnic backgrounds working in care homes and adapting working practices to improve impact on identity, job satisfaction and staff retention.

Patient and Public Involvement

One care home worker was involved in developing the topic guide and helping to interpret the findings.     

Minority ethnic community participation in needs assessment and service development in primary care: perceptions of Pakistani and Bangladeshi people about psychological distress

Objectives To promote community participation in exploring perceptions of psychological distress amongst Pakistani and Bangladeshi people, in order to develop appropriate services. Design Training and facilitation of resident community members (as community project workers), to define and conduct qualitative research involving semistructured interviews in their own communities, informing primary care led commissioning and service decision making. Setting A socio-economically disadvantaged inner-city locality in the UK. Participants One-hundred and four South Asian people (49 of Pakistani and 55 of Bangladeshi origin), interviewed by 13 resident community members. Results All community project workers completed training leading to a National Vocational Qualification, and successfully executed the research. Most study respondents located their main sources of stress within pervasive experience of racism and socio-economic disadvantage. They were positive about `talking' and neutral listening as helpful, but sought strategies beyond non-directive counselling services that embraced practical welfare advice and social support. The roles of primary health care professionals were believed to be restricted to physical ill health rather than personal distress. The importance of professionals' sex, age, ethnicity and social status were emphasized as affecting open communication. Practical recommendations for the re-orientation and provision of services were generated and implemented in response to the findings, through dialogue with a primary care commissioning group, Health and Local Authority, and voluntary agencies. Conclusions The work illustrates the feasibility and value of a community participation approach to research and service development in addressing a challenging and neglected area of minority ethnic health need. It offers one model for generating responsive service change in the context of current health policy in the UK, whilst also imparting skills and empowering community members. The study findings emphasize the need to recognize the social contexts in which distress is experienced and have implications for effective responses.     

Diets of minority ethnic groups in the UK: influence on chronic disease risk and implications for prevention

• ○ 1.1 Definitions of ‘ethnic groups’ and ‘ethnicity’
• ○ 1.2 Demographics and characteristics of minority ethnic groups in the UK
  • – Countries of origin
  • – Age/sex distribution and life expectancy
  • – Geographical distribution and size of household
  • – Religious beliefs
  • – Education and employment patterns
  • Key points

2 Overview of the health profile and dietary habits of minority ethnic groups in the UK

• ○ 2.1 Available surveys
• ○ 2.2 Overview of the health profiles among adults from minority ethnic groups
  • – Overall health
  • – Cardiovascular disease (CVD)
  • – Coronary heart disease (CHD)
  • – Stroke
  • – Type 2 diabetes
  • – Obesity
• ○ 2.3 Possible causes of increased disease risk among minority ethnic groups
• ○ 2.4 Smoking, drinking and physical activity habits
• ○ 2.5 Dietary habits and nutritional status
• ○ 2.6 Overview of the health profiles and dietary and health behaviour patterns of children from minority ethnic groups
  • – Overall health
  • – Diet and health behaviour patterns
• ○ 2.7 Gaps in data availability
  • – Income and socio‐economic status
  • – Food availability and access
  • – Awareness of healthy eating
  • – Religious beliefs
  • – Food beliefs
  • – Time and cooking skills
  • – Generation and gender
  • Key points
• 4 Traditional diets of minority ethnic groups
  • ○ 4.1 Overview of traditional diets of minority ethic groups
    • – South Asians
    • – African‐Caribbeans
    • – Chinese
  • ○ 4.2 Dietary acculturation
  • ○ 4.3 Nutritional composition of ethnic‐style cuisine
    • ○ 5.1 Effective nutritional interventions
    • ○ 5.2 Health promotion interventions to prevent problems associated with fasting
    • ○ 5.3 Priorities for nutritional interventions and health promotion
    • ○ 5.4 Using behaviour change models
    • ○ 5.5 Current community initiatives
    • ○ 5.6 Catering for institutionalised individuals
    • ○ 5.7 Recommendations for future research, policy and practice
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Why ethnic minority groups are under-represented in clinical trials: a review of the literature

Randomised controlled trials (RCTs) are considered to be the gold standard in evaluating medical interventions; however, people from ethnic minorities are frequently under-represented in such studies. The present paper addresses a previously neglected debate about the tensions which inform clinical trial participation amongst people from ethnic minorities, in particular, South Asians, the largest ethnic minority group in the UK. In a narrative review of the available literature, based mainly on US studies, the present authors aim to make sense of the issues around under-representation by providing a theoretical reconciliation. In addition, they identify a number of potential barriers to ethnic minority participation in clinical trials. In so doing, the authors recognise that the recent history of eugenic racism, and more general views on clinical trials as a form of experimentation, means that clinical trial participation among people from ethnic minorities becomes more problematic. Lack of participation and the importance of representational sampling are also considered, and the authors argue that health professionals need to be better informed about the issues. The paper concludes by offering a number of strategies for improving ethnic minority accrual rates in clinical trials, together with priorities for future research.     

Partnership working by default: district nurses and care home staff providing care for older people

Older people residents in care homes that only offer residential care rely on primary healthcare services for medical and nursing needs. Research has investigated the demands that care homes staff and residents make on general practice, but not the involvement of other members of the primary healthcare team. This paper describes two consecutive studies completed in 2001 and 2003 that involved focus groups and survey methods of enquiry conducted in two settings: an England shire and inner London. The research questions that both studies had in common were (1) What is the contribution of district nursing and other primary care services to care homes that do not have on‐site nursing provision? (2) What strategies promote participation and collaboration between residents, care home staff and NHS primary care nursing staff? and (3) What are the current obstacles and aids to effective partnership working and learning? A total of 74 community‐based nurses and care home managers and staff took part in 10 focus groups, while 124 care home managers (73% of the171 surveyed) and 113 district nurse team leaders (80% of the 142 surveyed) participated in the surveys. Findings from both studies demonstrated that nurses were the most frequent NHS professional visiting care homes. Although care home managers and district nurses believed that they had a good working relationship, they had differing expectations of what the nursing contribution should be and how personal and nursing care were defined. This influenced the range of services that older people had access to and the amount of training and support care home staff received from district nurses and the extent to which they were able to develop collaborative and reciprocal patterns of working. Findings indicate that there is a need for community‐based nursing services to adopt a more strategic approach that ensures older people in care homes can access the services they are entitled to and receive equivalent health care to older people who live in their own homes.     

Negotiating sexuality in home care settings: older lesbians and bisexual women's experiences

There is evidence that lesbians and bisexual women often face prejudice and stigma when accessing routine primary healthcare services. However, limited research to date has examined their experiences outside of primary healthcare contexts or the perspectives of older healthcare users. This paper presents findings from a qualitative study of older lesbians and bisexual women in Ontario who accessed publicly-funded home care services. In qualitative in-depth interviews, 16 women responded to questions about their decision making around disclosure of their sexuality, home care workers' reactions to disclosure and their experiences of receiving care. The thematic analysis of participants' responses demonstrated that they experienced isolation and ongoing anxiety, as well overt and subtle examples of heterosexism and discrimination. However, there was also evidence of participants' resilience and resistance to heteronormativity and sexual minority stress. These findings have implications for our understanding of lesbians' and bisexual women's healthcare experiences and for policy recommendations.     

Using older home care user experiences in performance monitoring

Home care services play a fundamental role in England in supporting older and disabled people in their own homes. In order to identify and monitor the degree to which these services are providing good quality services, in 2003 the government required all councils with social services responsibilities (CSSR) to undertake user experience surveys among older service users. The questionnaire was required to include four questions, two of which were designed to be used as Best Value Performance Indicators (BVPI) reflecting the quality of home care of older people. Thirty‐four local authorities participated in an extension study providing data from 21 350 home care users. The aim of the study was to answer three questions: (1) Do the performance indicators reflect home care quality? (2) Are the performance indicators using the most appropriate cut‐off points? (3) What are the underlying constructs of home care quality? Evidence was found to support the use of two of the performance indicators and the current cut‐off point being used for the satisfaction indicator. Factor analysis identified indicators of important dimensions of quality that were associated with overall satisfaction.     

家庭功能对老年人家庭访视护理需求影响

目的探讨社区老年人家庭功能、家庭访视护理需求状况及两者之间的关系,为社区医护人员实施家庭访视护理提供依据。方法采取便利抽样入户调查方法,选取宁夏自治区银川市妇幼保健院永丰社区医疗卫生服务站管辖的2个居委会660户家庭,应用家庭关怀度指数问卷和自制的社区老年人家庭访视护理服务需求问卷进行调查。结果家庭功能总分为（5.50±2.503）分,家庭功能良好占34.8%,家庭功能障碍占65.2%;家庭功能障碍组老年人的家庭访视护理总需求及生活护理、健康促进和护理服务需求得分分别为（139.76±30.083）、（27.75±6.491）、（33.42±5.577）、（78.59±19.006）分,均高于家庭功能良好组的（133.95±34.451）、（26.38±7.502）、（32.43±6.536）、（75.14±21.347）分（P均<0.05）;且社区老年人家庭功能与家庭访视护理需求呈负相关（r=-0.135,P<0.01）,其中家庭功能障碍与家庭访视护理需求的生活护理、健康促进、护理服务各维度均呈负相关（r=-0.142~-0.166,P均<0.01）。结论社区老年人的家庭功能有待进一步改善,家庭功能与家庭访视护理需求密切相关。     

Becoming at home in residential care for older people: a material culture perspective

Residential homes encourage new residents to bring belongings with them, so that they can personalise their room and ‘feel at home’. Existing literature on material culture in residential homes views objects as symbols and repositories of home and identity, which can facilitate a sense of belonging in residents through their display in residents' rooms. I suggest that this both misunderstands the processual and fluid nature of home and identity, and conceptualises objects as essentially passive. This article uses ethnographic data and theories of practice and relationality to argue that rather than the meaning of home being inherent in objects, or felt subjectively by residents, meaning is generated through ongoing, everyday interactions between the two. I show that residents became at home by acquiring new things –as well as displaying existing possessions – and also through interacting with mundane objects in everyday social and relational practices such as cleaning and hosting. I conclude that being at home in older people's residential homes need not be so different from being at home at other stages of the life course and in other settings. This challenges conceptualisations of older people's homes – and older age itself – as somehow unknowable and unfamiliar.     

Addressing the nutritional needs of older people in residential care homes

In the UK and Europe, malnutrition in older people is a significant and continuing problem. Malnutrition predisposes to disease, impedes recovery from illness, increases mortality and is costly to society. Despite the high number of older people potentially at risk, malnutrition in care homes has been under explored. There is concern that national guidelines regarding the nutritional care of older people in residential care homes are not always implemented. This qualitative study explored the factors that influence the nutritional care provided to residents in two different types of local authority residential care homes (providing personal care) in Wales. One home had communal dining rooms; the other had eight bedded units with their own kitchen and dining facilities. The sample of 45 participants, comprised 19 staff (managers, care and catering staff), 16 residents and 10 residents' relatives. Data were collected using semi-structured interviews, focus groups, observation and documentary review between August 2009 and January 2010. This paper focuses on how staff assessed and addressed residents' nutritional needs. In both care homes, staff strove to be responsive to residents' dietary preferences, provided person-centred care and worked in partnership with residents and their families to provide nutritious food in a homely environment. Neither home conducted nutritional screening to identify those at risk of malnutrition, contrary to national guidelines, but relied on ad hoc observation and monitoring. The staff's knowledge of special dietary needs was limited. A need for further training for care home staff regarding the importance of nutrition in maintaining health in older people, use of nutritional screening and special dietary needs was identified. Shared nutrition training between health and social care staff needs expansion and policy implications in terms of an enhanced regulatory focus on maintaining nutritional needs in care homes are proposed.     

72-hour hospital readmission of older people after hospital discharge with home care services

In this retrospective cohort study in Argentina, risk factors for hospital readmission of older adults, within 72 hours after hospital discharge with home care services, were analyzed. Fifty-three percent of unplanned emergency room visits within 72 hours after hospital discharge resulted in hospital readmissions, 65% of which were potentially avoidable. By multivariate logistic regression, low functionality, pressure ulcers, and age over 83 years predicted hospital readmission among emergency room attendees. It is important to identify and analyze barriers in current home care services and the high-risk population of hospital readmission to improve the strategies to avoid adverse outcomes.     

Supporting the involvement of older adults with complex needs in evaluation of outcomes in long‐term care at home programmes

BackgroundIt is important to involve older people in evaluating public programmes that affect their lives. This includes those with physical and cognitive impairments (such as dementia) who may need support to live at home. Many countries have implemented new approaches to support older people to live well at home for longer. However, it can be challenging to involve disabled people in service evaluation, so we are unclear whether services are meeting their needs.AimThis study explored how a cascading methodology, offering different supports enabled the involvement of home care users with cognitive and physical impairments in the assessment of their care‐related quality of life.MethodWe used multiple tools from the Adult Social Care Outcomes Toolkit (ASCOT) with n = 63 older adults who were recipients of home care in the Illawarra. We also offered different physical and cognitive supports as needed.ResultsWe started with the standard ASCOT questionnaire to assess the care‐related quality of life, but then offered alternative formats (including Easy Read) and supports (including physical and cognitive assistance) if the older person needed them to participate. This allowed us to involve a greater diversity of older people in the evaluation, and changed what we found out about whether their care needs were being met.ConclusionThere is a need to implement more flexible and inclusive methods to increase the involvement of vulnerable users of long‐term care in the assessment of service outcomes. This is important to ensure that the perspectives of all service users inform the delivery of person‐centred care. It is also critical to understand the extent to which programmes are meeting the needs of vulnerable service users.Patient or Public ContributionService users with dementia were involved in the design of the ‘Easy Read’ questionnaire used in the study.     

Alcohol misuse in older people: the role of home carers

Research on problems associated with alcohol use in older people is scant and contradictory. The “greying” of the population and the current emphasis on care in the community, mean that it is increasingly important to understand patterns of alcohol use which may incur risk in elderly people, and to develop appropriate prevention and early intervention approaches. This paper begins with a brief overview of the literature on alcohol misuse in older people, and discusses some of the problems of identifying and responding to problem drinking in the elderly. The paper then examines the potential role of one group of workers, home carers who, for many elderly people, are a crucial link to the world beyond their homes. It is suggested that home carers are well placed to respond to risky drinking among elderly people but that they experience both structural and personal barriers to adopting a more active role. The provision of appropriate information and training may go some way towards encouraging carers to remain alert to alcohol related problems in elderly clients but supportive, accessible services are also required.     

Qualitative analysis and conceptual mapping of patient experiences in home health care

This study explored patient experiences in home health care through a literature review, focus groups, and interviews. Our goal was to develop a conceptual map of home health care patient experience domains. The conceptual map identifies technical and personal spheres of care, relating prior studies to new focus group and interview findings and identifying the most important domains of care. Study participants (n = 35) most frequently reported the most important domain as staff who are caring, supportive, patient, empathetic, respectful, and considerate (endorsed by 29% of participants). The conceptual map includes 114 discrete domains.     

How Iranian lay people in three ethnic groups conceptualize a case of a depressed woman: an explanatory model

Objective(s). Although depression is a major public health problem, little is known about lay people's views of this subject in Iran. The aim of this study was to explore how depression in women is viewed among lay people in three major ethnic groups – Kurd, Turk, and Fars.

Design. Participants were selected from public urban healthcare centers. Four focus group discussions were conducted for each of the three ethnic groups and classified by level of education from three locations, in the capital city (Tehran), west (Ilam), and the northwest (Tabriz) of Iran. Twelve focus groups; 38 men and 38 women have been conducted by using a case vignette describing a woman with major depression.

Results. Depression symptoms were perceived as a temporary phenomenon. It was regarded as a colloquial term for feeling blue, mostly related to external stressors (social model). The common terms used in all ethnic groups were depression, and nerve/soul distress. Environmental cause and war were considered as external causes of the symptoms, and emotional factors, cognition distortion, and biological reasons, as internal factors. The participants believed it was necessary to seek help from religion, family and friends, positive thinking, and distraction from social problems, besides consultations with psychologists as counselors. Medication was often seen as the last resort. Stigma was mentioned as an important factor that makes people avoid visiting psychiatrists.

Conclusion. These data may have implications for mental healthcare practice, especially for the approach to diagnosis of depression. Moreover, there is a need for developing and integrating gender-relevant and cultural indicators in the existing national mental health systems in Iran.