Challenges for psychosocial rehabilitation services in the Lisbon Metropolitan Area: A qualitative approach

In Portugal, a mental health reform process is in place aiming to redefine the model of service provision. In 2008, a National Mental Health Plan (NMHP) was approved to provide policy guidance over the transition period. The NMHP intended, among others, to develop community‐based services, with a specific focus on rehabilitation and deinstitutionalization. This study aims to explore the perspectives of service managers of psychosocial rehabilitation services regarding the main challenges to support the community living of persons with severe mental illnesses (PWSMI) in the Lisbon Metropolitan Area (LMA). The paper also contextualises the provision of psychosocial services within the country's mental health reform process and characterises the profile of service users in socio‐occupational units (SOUs) of the LMA. Semi‐structured interviews were performed with all SOUs’ managers of the LMA (n = 13). Information regarding service user characteristics was collected based on service records (n = 344). Interviews were analysed according to the framework methodology. The results of the interviews were triangulated using document analysis. Fieldwork took place between June and July 2016. The findings suggest that the development of the mental health reform ensured significant changes to service delivery. Community‐based mental health organisations are an important actor for service provision. However, important asymmetries were identified in the provision of psychosocial care within the LMA. At the same time, family carers are perceived as responsible for ensuring a large part of the social needs of the PWSMI but there is an increasing concern with their own ageing processes. As a conclusion, it is highlighted the current inequality between services and the need to contemplate a life‐course perspective that comprehends the ageing process of caregivers poses an emerging challenge for psychosocial rehabilitation. These findings are also important for other low‐ and middle‐income countries passing through similar reforms.     

Family care-giving and chronic illness: how parents cope with a child with a sickle cell disorder or thalassaemia

There has been increasing interest in the way parents cope with childhood chronic illness and a shift away from merely describing the 'burdens' of care. An emphasis on coping by introducing ideas such as co-ordinated, accessible and appropriate service delivery as well as empowerment raises important policy and practice issues for public health. This paper, by drawing on qualitative material from a project evaluating service support to families caring for a child with a haemoglobinopathy, examines how parents cope with their caring responsibilities. First, it discusses the general literature on how carers respond to their role, before examining the specific literature dealing with the response of parents who look after a child with a haemoglobinopathy. Second, it presents the empirical accounts of parents who care for a child with a sickle cell disorder (SCD) or thalassaemia within the context of this broader literature. The paper concludes that all parents found caring stressful and demanding, but accept that they have to cope with the situation for the sake of the child. Parents' contact with services is an especially important contributory factor to their ability to cope and parents described how services can both hinder and support their caring role. Appropriate professional support can help reduce stress and facilitate coping by offering information, financial help and emotional support. Unsympathetic responses from professionals, or their incompetence, however, meant that many parents identified service provision as part of the problem, potentially undermining their ability to come to terms with the condition.     

Providing effective and preferred care closer to home: a realist review of intermediate care

Intermediate care is one of the number of service delivery models intended to integrate care and provide enhanced health and social care services closer to home, especially to reduce reliance on acute care hospital beds. In order for health and social care practitioners, service managers and commissioners to make informed decisions, it is vital to understand how to implement the admission avoidance and early supported discharge components of intermediate care within the context of local care systems. This paper reports the findings of a theory‐driven (realist) review conducted in 2011–2012. A broad range of evidence contained in 193 sources was used to construct a conceptual framework for intermediate care. This framework forms the basis for exploring factors at service user, professional and organisational levels that should be considered when designing and delivering intermediate care services within a particular local context. Our synthesis found that involving service users and their carers in collaborative decision‐making about the objectives of care and the place of care is central to achieving the aims of intermediate care. This pivotal involvement of the service user relies on practitioners, service managers and commissioners being aware of the impact that organisational structures at the local level can have on enabling or inhibiting collaborative decision‐making and care co‐ordination. Through all interactions with service users and their care networks, health and social care professionals should establish the meaning which alternative care environments have for different service users. Doing so means decisions about the best place of care will be better informed and gives service users choice. This in turn is likely to support psychological and social stability, and the attainment of functional goals. At an organisational level, integrated working can facilitate the delivery of intermediate care, but there is not a straightforward relationship between integrated organisational processes and integrated professional practice.     

The personal significance of home: habitus and the experience of receiving long-term home care

The physical, symbolic and experiential aspects of receiving long-term care are examined in this paper using Bourdieu's concepts of habitus and field. We draw on data from an ethnographic study of home care in 16 homes in urban, rural and remote locations in Ontario, Canada. Across all cases, data about domestic and caregiving routines were gathered through observation, interviews with clients and/or the primary family caregiver, interviews with service providers and videotaped tours of the home. Based on the analysis of these data, we argue that a transposition of logics and practices occurred when the domestic and health care fields were superimposed within the spaces of the home. Although all of the care recipients and their family caregivers indicated a strong preference for home care over institutional care, their experiences and practices within their homes were disrupted and reconfigured by the insertion of logics emanating from the healthcare field. These changes were manifested in three main themes: the politics of aesthetics; the maintenance of order and cleanliness; and transcending the limitations of the home. In each of these dimensions, it became apparent that care recipients engaged in improvisatory social practices that reflected their ambiguous and changing habitus or social location. The material spaces of their homes signified, or prompted, altered or changing social placement.     

新冠肺炎疫情下儿童保健门诊家长心理体验及需求的定性研究

目的 通过现象学研究,探索新冠肺炎疫情背景下儿童保健门诊家长心理体验及需求.方法 采用半结构式深度访谈法和观察法,对17名儿童保健门诊的家长进行质性访谈,借助Nvivo 8软件,应用Colaizzi分析法和合众法对访谈收集到的资料进行整理与分析.结果 新冠肺炎疫情背景下儿童保健门诊家长心理体验及需求共提炼出4个主题:对...     

How to stay motivated: A focus group study of Norwegian caregivers' experiences with community healthcare services to their parents with dementia

Motivation to provide care is a significant predictor of informal caregiving among family caregivers of persons with dementia. Adequate support is an important source of help and relief to caregivers, but fragmentation of dementia care services is common and better ways of supporting these caregivers are needed. Knowledge of adult-child caregivers' motivation and how this motivation is influenced by community healthcare services is lacking. The aim of this study is therefore to describe and explore adult children's experiences with community healthcare services for their home-dwelling parent with dementia and how these influence their caregiver motivation. The study applied a qualitative design based on three focus group interviews with 15 of these caregivers (40–69 years) in Norway in 2017. The study results indicate three categories supporting adult children's sustained motivation as caregivers: (a) caregivers prioritize their parent's need for healthcare services over their own need for support; (b) caregivers need acknowledgement through respect and involvement; and (c) caregivers need timely information and competence as the dementia progresses. To stimulate collaboration among adult-child caregivers, their parents with dementia, and community healthcare services, we claim that a relationship-centred care framework could be emphasised as a way of supporting sustained motivation among caregivers to parents with dementia as part of community healthcare services.     

Food provision for older people receiving home care from the perspectives of home‐care workers

Malnutrition is a significant cause of morbidity and mortality, particularly among older people. Attention has focused on the inadequacies of food provision in institutions, yet the majority suffering from malnutrition live in the community. The aim of this study was to explore barriers and facilitators to food provision for older people receiving home care. It was a qualitative exploratory study using semi‐structured interviews with nine home‐care workers in June 2013 employed by independent agencies in a large city in northern England. Data were analysed thematically, based on the principles of grounded theory. Findings showed that significant time pressures limited home‐care workers in their ability to socially engage with service users at mealtimes, or provide them with anything other than ready meals. Enabling choice was considered more important than providing a healthy diet, but choice was limited by food availability and reliance on families for shopping. Despite their knowledge of service users and their central role in providing food, home‐care workers received little nutritional training and were not involved by healthcare professionals in the management of malnutrition. Despite the rhetoric of individual choice and importance of social engagement and nutrition for health and well‐being, nutritional care has been significantly compromised by cuts to social care budgets. The potential role for home‐care workers in promoting good nutrition in older people is undervalued and undermined by the lack of recognition, training and time dedicated to food‐related care. This has led to a situation whereby good quality food and enjoyable mealtimes are denied to many older people on the basis that they are unaffordable luxuries rather than an integral component of fundamental care.     

Views of parents preferring to raise a bilingual child

ABSTRACT

This study aims to compare the views of parents living in their own country or abroad on raising bilingual children. At the end of the study, we found that parents from both groups gave similar answers to the questions regarding the definition of bilingualism and the age for starting bilingual education; however, they gave similar but also different answers to the questions about their reasons for raising their children bilingually, how they raise them bilingually, and the advantages and disadvantages of being bilingual. Furthermore, we found that parents living in their own country attribute more meaning to raising children bilingually. We believe that this finding stems from the fact that parents living abroad mostly raise their children bilingually out of obligation whereas those living in their own country do so voluntarily and deliberately. We discussed all findings in light of the existing literature.     

Qualitative evaluation of a community‐based intervention to reduce social isolation among older people in disadvantaged urban areas of Barcelona

This study analyses participants' and coordinators' perceptions of the implementation process and perceived benefits of a community‐based intervention to reduce social isolation among older adults. The ‘School of Health for Older People’ is a weekly community intervention that promotes resources among individuals and communities in order to enhance their ability to identify problems and activate solutions, encouraging participation in the community. A qualitative approach was employed, based on semi‐structured interviews and focus groups (FGs). This study was carried out in Barcelona. Two coordinators (community nurses) and 26 community‐dwelling people aged 65 and over who attended the School of Health for Older People in the neighbourhoods of Besòs and Guineueta, participated in in‐depth interviews and FGs between January and February 2016. Views and experiences about the intervention were explored. The main perceived effects of the intervention were expanding knowledge of health issues and of community activities, encouraging participants to go out, giving them a feeling of being heard, and peer relationships, increasing participants' contacts and knowledge while the main negative features were related to repetition of certain contents. The benefits identified included learning something about health and their own neighbourhood and breaking the habit of staying at home. Social isolation might be prevented by increasing the number of contacts with peers and sharing a common interest, since it could help to give them a sense of belonging to a community .     

Care of the chronically ill at home: an unresolved dilemma in health policy for the United States

The problems of caring for patients with disabling illnesses who neither get well nor die are not new. Such patients have always required assistance at home from family, benevolent volunteers, or paid caregivers. Despite two centuries of experimentation, however, no agreement exists concerning the balance between the public and private resources to be allocated through state funding, private insurance, and family contributions for the daily and routine care at home for chronically ill persons of all ages. This article examines these issues and the unavoidable tensions between fiscal reality and legitimate need. It also uses historical and policy analyses to explain why home care has never become the cornerstone for caring for the chronically ill.     

Supporting older people with multimorbidity: The care burden of home health-care assistants in Ireland

The treatment burden inherent in self-managing multiple chronic conditions (multimorbidity) is recognized, but there has been little examination of the care burden experienced by paid home health-care assistants (HCAs) who support older people with multimorbidity. Focus groups were conducted with HCAs in Ireland and data were coded using a thematic analysis approach. Care burden of HCAs was linked with lack of knowledge and information, poor communication, insufficient time and resources, gaps in medication support and work-related stress. Strategies are required to reduce the care burden of HCAs, who are essential stakeholders supporting growing numbers of older people with multimorbidity.     

Bereaved informal cancer carers making sense of their palliative care experiences at home

This qualitative study explored the positive meanings constructed and ascribed to the experience of providing palliative care at home by bereaved informal cancer carers, a group of individuals who are in a position to make sense of their caring experiences as a coherent whole. Twenty‐two bereaved cancer carers, living in New South Wales (NSW), Australia, were interviewed as part of a larger mixed‐method study examining the experience of informal cancer care. Participants were recruited through cancer support groups and cancer clinics, and through the Cancer Council NSW. Accounts of positive aspects of palliative caring were analysed using a thematic analytical approach from a constructionist perspective. The findings indicated that these bereaved carers gave accounts that accentuated the benefit and satisfaction derived from providing direct palliative care at home, which enabled them to construct positive meanings associated with their participation in the dying process, and as a result to ascribe subjectively meaningful interpretations to their loved ones’ death and their sense of loss. This included a sense of reward for doing something good, meeting the expressed needs of the patient, continuing with normal life as much as possible, improving the conditions of the relationship and meeting cultural expectations of the right thing to do. Being present at the point of death was positioned as rewarding because it facilitated the process of saying goodbye, fostered inclusion of others, provided closure and was a spiritual experience. These findings suggest that there are positive and rewarding aspects associated with providing informal cancer care in a palliative context, and these aspects were pertinent and meaningful for carers in their endeavours to reconcile the difficulties and loss they experienced. This has implications for the prevention and amelioration of distress experienced by informal cancer carers, and suggests that future research should not ignore the positive aspects of providing palliative care.     

‘Somebody there to watch over you’: the role of the family in everyday and emergency diabetes care

This paper reports on the role of family members in everyday diabetes self‐care and in diabetic crises. It is based on qualitative data drawn from 45 semi‐structured interviews with a wide range of people with an established diagnosis of Type 1 or Type 2 diabetes, who were admitted to hospital for urgent or emergency treatment in connection with their diabetes. The interviews were carried out in two contrasting sites in the United Kingdom in 2009–2010, transcribed and analysed thematically with particular reference to framework analysis methods. We found that family involvement in self‐care was common, and the role of family and friends was especially important when the person with diabetes needed urgent help. We comment on the diversity of family members who assisted regularly or dealt with crises, the importance of taking account of the complexities of family life, including reciprocal care, and the particular problems faced by people without family support. Finally, we make recommendations for further research and for improvements in existing services.