The perspective of employers/families and care recipients of migrant live‐in caregivers: a scoping review

In high‐income countries, migrant live‐in caregivers are increasingly in demand to provide health and social care in the home. While there is a wide range of research on the perspectives of live‐in caregivers (including domestic workers) in destination countries, few studies address the perspective of families who hire them. The aim of this study was to explore the extent, range and nature of international literature on the needs and experiences of employers/families and care recipients of live‐in caregivers. We undertook a scoping review of the literature on this topic using Arksey and O'Malley's five stages. With the assistance of a health science librarian, a comprehensive search of nine databases was undertaken from April to July 2014. Two research assistants independently reviewed 2493 articles. The data were analysed through data charting, numerical summary and thematic analysis. Thirteen articles met the inclusion criteria for the scoping review. Many of these studies (n = 7) were conducted in Israel, and the majority (n = 8) focus on elderly care recipients. The findings reveal the diverse roles live‐in caregivers perform, including emotional and physical care; changes in family dynamics and roles upon hiring a live‐in caregiver; the negative experiences, including abuse, of live‐in caregivers and elderly care recipients; the positive outcomes for families with a live‐in caregiver; and families’ common perception that live‐in caregivers are like kin, a part of the family. Furthermore, evidence points to some degree of bi‐directional emotional support between caregivers and employers/families, which adds complexity to their relations and the negotiation of power.     

Keeping the focus on children: the challenges of safeguarding children affected by domestic abuse

Safeguarding children affected by domestic abuse is a key responsibility for all professionals working with children and families, but can be difficult to achieve in practice. Despite a policy emphasis on early intervention and child‐centred work, limited attention has been paid to how professionals in universal and additional support services address this important area of work. This paper reports findings from qualitative research undertaken in one local authority area in the north of England during 2011 which examines the challenges facing professionals in safeguarding children affected by domestic abuse. Six mixed professional focus groups were held, attended by a total of 23 participants. Discussion focused upon participants’ awareness of domestic abuse, how they assessed and met children and young peoples’ needs, and their views about service provision and safeguarding processes. Data were transcribed and thematic analysis undertaken. The themes presented in this paper – embodied recognition, someone else's job, service gaps, skills deficits, and focusing upon children and young people – illustrate the scope and limitations of professionals’ work with children and young people affected by domestic abuse. Areas for practice improvement are discussed.     

Unmet health and rehabilitation needs of people with long‐term neurological conditions in Queensland,Australia

The survival and life expectancy rates of people with traumatic and degenerative neurological conditions are increasing, sometimes up to several decades. Yet compared to the general population, people with a disability continue to experience poorer health and are at greater risk of developing secondary health problems and facing barriers to services they require. These trends have significant implications for provision of health and rehabilitation services. In this study, the adequacy of health and rehabilitation services provided to people with long‐term neurological conditions and their unmet needs were explored from the perspectives of individual users, their nominated family members and key service providers. A qualitative research design with maximum variation sampling was used. Data were collected from semi‐structured interviews with 65 participants comprising 25 long‐term care service users, nominated family members or friends (n = 22) and care service providers (n = 18) in Queensland, Australia. All service users needed assistance with usual daily activities, and 22 were wheelchair dependent. The hours of funded personal care ranged from 2 to 201 hours per week. Data were analysed using framework analysis. Participants generally perceived that specialist medical and hospital services were adequate and satisfactory. They valued supportive health and rehabilitation professionals and receiving client‐centred physical rehabilitation. However, the majority of participants (n = 17) had perceived unmet needs for physical rehabilitation (n = 14), other health or rehabilitation services (n = 10) or counselling (n = 6). Community‐based physical maintenance rehabilitation was often perceived as inadequate, costly or inconveniently located. Participants highlighted the importance of personal and family counselling and information provision at time points such as diagnosis. The findings contribute to the limited international evidence on the gaps in health and rehabilitation services for people with neurological conditions receiving lifetime care services in the community. A continuum of integrated rehabilitation services to minimise avoidable impairments, optimise independence and functioning, and sustain quality of life is warranted.     

‘We’re all wounded healers’: A qualitative study to explore the well‐being and needs of helpline workers supporting survivors of domestic violence and abuse

Domestic violence and abuse (DVA) can include physical, psychological, sexual, emotional or financial abuses, and is a globally widespread problem across all age groups, cultures and socioeconomic groups. Alongside the impacts of DVA experienced by survivors, there is a growing recognition that other people, who form the support network of survivors, may also be affected by the situation. Domestic violence organisations such as helplines are important third sector services supporting survivors. However, there has been little research into the impact on those providing the support. This qualitative study of domestic violence helpline workers explored their needs and well‐being. We used qualitative methodology, conducting interviews with staff recruited from a selection of different helplines who all undertook direct client‐focused work. The interviews used a semi‐structured format and followed a topic guide covering the training received before commencing work, self‐care strategies, the impact of work on their daily life and support offered by their employer. Ten helpline staff were interviewed, all female. Following analysis of the qualitative data, a number of themes emerged. Participants disclosed numerous ways in which their work challenged their well‐being, including burnout, impact on personal relationships, and lack of training and support at work. Participants used some self‐care strategies in order to “switch off” from work, but they also wanted clinical supervision to support them with the difficulties they experienced at work. This study suggests that helpline staff should receive more education about trauma triggers, and ongoing support to reduce the impact on their home and social life, thus improving mental well‐being and job satisfaction. This work begins the debate on the well‐being needs of frontline helpline workers, and whether better meeting these needs can facilitate the provision of better support.     

Solidarity or dissonance? A systematic review of pharmacist and GP views on community pharmacy services in the UK

There has been a strong policy emphasis over the past decade on optimising patient‐centred care and reducing general practitioners’ (GPs’) workload by extending community pharmacy services and collaboration between pharmacists and GPs. Our aim was to review current evidence of pharmacists’ and GPs’ views of extended community pharmacy services and pharmacists’ roles in the United Kingdom (UK). A systematic review was undertaken looking at UK studies investigating pharmacists’ and/or GPs’ views of community pharmacy services or roles from 2005 to 2017. A range of databases were searched including EMBASE, PubMed, Scopus, Web of Science, International Pharmaceutical Abstracts (IPA), PsycINFO, Science Direct and The Cumulative Index to Nursing and Allied Health Literature (CINAHL). In addition, reference lists of included studies were screened and grey literature was searched. Following the application of inclusion/exclusion criteria, the quality of papers was critically analysed, findings were extracted into a grid and subjected to narrative synthesis following thematic analysis. The search strategy yielded a total of 4,066 unique papers from which 60 were included. Forty‐seven papers covered pharmacists’ views, nine combined both pharmacists’ and GPs’ views and four covered GPs’ views. Study designs included interviews (n = 31, 52%), questionnaire surveys (n = 17, 28%) and focus groups (n = 7, 12%). Three main themes emerged from the data: “attitudes towards services/roles”, “community pharmacy organisations” and “external influences”. Pharmacists and GPs perceived a number of barriers to successful implementation and integration of pharmacy services. Moreover, collaboration between pharmacists and GPs remains poor despite the introduction of extended services. Overall, extending community pharmacy services require quality‐driven incentives and joint working between community pharmacists and GPs to achieve better integration within the patient's primary care pathway.     

Patient‐centred care training needs of health care assistants who provide care for people with dementia

It is well documented that Health care assistants (HCAs) provide the most hands‐on care to residents in aged care facilities, and play a critical role in the provision of care to dementia residents. Over the last 25 years, a philosophy of person‐centred care has become the preferred approach to care and this has meant that HCAs are encouraged to get to know the resident very well. This paper reports the experiences of HCAs in caring for people at end‐of‐life, identifies the skills required for their work and examines the education provided against these skills. Semi‐structured interviews were conducted in 49 facilities (n = 34) across New Zealand and data analysed thematically, with the aim of critically examining the adequacy of education for health care assistants which meets their needs within a person‐centred environment. The results confirm that the skills include traditional tasks of care (showering, feeding, toileting, and dressing) but the increasingly important communication and de‐escalation skills, both verbal and non‐verbal, have become central to their care skills. Education provided has not sufficiently shifted focus to include these more complex skills. Provision of educations that acknowledges the increased complexities of their role needs to be provided. As well, facilities need to be challenged to reconsider the HCA's position in the facility care tem.     

A qualitative exploration of barriers to HIV prevention,treatment and support: Perspectives of transgender women and service providers

Transgender (trans) women experience barriers to access to HIV care, which result in their lower engagement in HIV prevention, treatment and support relative to cisgender people living with HIV. Studies of trans women's barriers to HIV care have predominantly focused on perspectives of trans women, while barriers are most often described at provider, organisation and/or systems levels. Comparing perspectives of trans women and service providers may promote a shared vision for achieving health equity. Thus, this qualitative study utilised focus groups and semi-structured interviews conducted 2018–2019 to understand barriers and facilitators to HIV care from the perspectives of trans women (n = 26) and service providers (n = 10). Barriers endorsed by both groups included: (a) anticipated and enacted stigma and discrimination in the provision of direct care, (b) lack of provider knowledge of HIV care needs for trans women, (c) absence of trans-specific services/organisations and (d) cisnormativity in sexual healthcare. Facilitators included: (a) provision of trans-positive trauma-informed care, (b) autonomy and choice for trans women in selecting sexual health services and (c) models for trans-affirming systems change. Each theme had significant overlap, yet nuanced perspective, between trans women and service providers. Specific recommendations to improve HIV care access for trans women are discussed. These recommendations can be used by administrators and service providers alike to work collaboratively with trans women to reduce barriers and facilitators to HIV care and ultimately to achieve health equity for trans women.     

Good practice in social care: the views of people with severe and complex needs and those who support them

This paper reports findings drawn from a study of good practice in English social care for adults with disability and older people with severe and complex needs. People with severe and complex needs are a relatively small proportion of adult social care service users, but they are growing in numbers and have resource‐intensive needs. The study involved qualitative research with adults with disability and older people with severe and complex needs, family carers and members of specialist organisations (n = 67), focusing on the features of social care services they considered to be good practice. Data were collected between August 2010 and June 2011. The approach to data collection was flexible, to accommodate participants' communication needs and preferences, including face‐to‐face and telephone interviews, Talking Mats^© sessions and a focus group. Data were managed using Framework and analysed thematically. Features of good practice were considered at three levels: (i) everyday support; (ii) service organisation; and (iii) commissioning. Findings relating to the first two of these are presented here. Participants emphasised the importance of person‐centred ways of working at all levels. Personalisation, as currently implemented in English social care, aims to shift power from professionals to service users through the allocation of personal budgets. This approach focuses very much on the role of the individual in directing his/her own support arrangements. However, participants in this study also stressed the importance of ongoing professional support, for example, from a specialist key worker or case manager to co‐ordinate diverse services and ensure good practice at an organisational level. The paper argues that, despite the recent move to shift power from professionals to service users, people with the most complex needs still value support from professionals and appropriate organisational support. Without these, they risk being excluded from the benefits that personalisation, properly supported, could yield.     

Australian homeless persons’ experiences of social connectedness,isolation and loneliness

Both loneliness and a lack of social integration are associated with serious physical and psychological health issues. One population highly susceptible to social isolation and loneliness are individuals who are homeless, who also experience high rates of mental disorder and relationship breakdown. Despite this, little research has explored how social networks, isolation and loneliness are experienced for those with a history of homelessness. In‐depth, semi‐structured interviews were used to get a nuanced understanding of how social networks and isolation are experienced and understood by individuals experiencing homelessness. Sixteen participants who were either homeless (n = 11) or previously homeless (n = 5) in Sydney, Australia, completed one‐off interviews that were audio‐recorded and transcribed. Data were analysed using thematic analysis. Participants constructed their social networks as being both constrained and enabled by marginalisation. They experienced rejection from the non‐homeless: the loss of critical network members, including rejection from family and a lack of companionship, and low quality and precarious relationships within the homeless community. These accounts were best conceptualised through loneliness theory. Participant's accounts signal that the homeless will likely continue feeling isolated if mainstream attitudes towards homelessness remain stigmatising and discriminatory.     

It ‘makes you feel more like a person than a patient’: patients’ experiences receiving home‐based primary care (HBPC) in Ontario,Canada

The lack of effective systems to appropriately manage the health and social care of frail older adults – especially among those who become homebound – is becoming all the more apparent. Home‐based primary care (HBPC) is increasingly being promoted as a promising model that takes into account the accessibility needs of frail older adults, ensuring that they receive more appropriate primary and community care. There remains a paucity of literature exploring patients' experiences with HBPC programmes. The purpose of this study was to explore the experiences of patients accessing HBPC delivered by interprofessional teams, and their perspectives on the facilitators and barriers to this model of care in Ontario, Canada. Using certain grounded theory principles, we conducted an inductive qualitative content analysis of in‐depth patient interviews (n = 26) undertaken in the winter of 2013 across seven programme sites exploring the lived experiences and perspectives of participants receiving HBPC. Themes emerged in relation to patients' perceptions regarding the preference for and necessity of HBPC, the promotion of better patient care afforded by the model in comparison to office‐based care, and the benefits of and barriers to HBPC service provision. Underlying patterns also surfaced related to patients' feelings and emotions about their quality of life and satisfaction with HBPC services. We argue that HBPC is well positioned to serve frail homebound older adults, ensuring that patients receive appropriate primary and community care – which the office‐based alternative provides little guarantee – and that they will be cared for, pointing to a model that may not only lead to greater patient satisfaction but also likely contributes to bettering the quality of life of a highly vulnerable population.     

Skill mix: The potential for personal assistants to undertake health‐related tasks for people with personal health budgets

Personal health budgets (PHBs) are being promoted in England as expanding the benefits of choice and control to individuals with healthcare needs. National Health Service (NHS) money is provided to eligible people to use as set out in approved care plans, including direct employment of personal assistants (PAs). The government plans to increase NHS‐funded PHBs and to further introduce integrated personal budgets (IPBs). This potentially creates more demand for directly employed or self‐employed PAs with health‐related skills. The objective of this paper is to report findings from interviews with PAs (n = 105) and key informants (n = 26) from across England, undertaken between October 2016 and August 2017, about the potential for the PA workforce to undertake ‘health‐related’ tasks as facilitated by the introduction of PHBs. PAs were purposefully recruited to ensure the sample included participants from different geographical locations. Key informants were purposefully selected based on their knowledge of policy and community services. Data were analysed quantitatively and qualitatively. This paper focuses on reporting qualitative findings, which are set within the theoretical framework of normalisation process theory to explore implementation challenges of PHBs. The majority (64%) of PAs confirmed that they saw their current roles as congruent with PHBs, were willing to engage with PHBs and undertake health‐related tasks. However, 74% of PAs said they would need additional training if enacting such roles. Key informant interviews appraised the development of PHBs as complex, noting incongruences arising from NHS and social care‐funded PAs carrying out similar roles within different organisational systems. We conclude the current PA workforce is willing to take on PHB work and is likely to interweave this with work funded by PBs and self‐funding care users. Implications include the need for careful consideration of training requirements and delivery for PHB‐funded PAs.     

Children's experiences and needs in situations of domestic violence: A secondary analysis of qualitative data from adult friends and family members of female survivors

Estimates suggest that 15% of children in the United Kingdom have been exposed to at least one form of domestic violence (DV) during their childhood, with more than 3% having witnessed an incident during the past year. This exposure increases the risk of children suffering both short‐term and long‐term impacts, including effects on their behaviour, social development, physical and mental health, educational attainment and quality of life. In addition, children living in environments where there is DV are at higher risk of maltreatment. Adult relatives and friends of the family often observe the experiences of children in situations of DV, and have the potential to shed light in a way that children and survivors may struggle to articulate, or be reluctant to acknowledge or disclose. Such accounts are largely absent from existing research, and yet bring a perspective which can broaden our understanding of the impact that DV has on children. This paper reports a secondary analysis of qualitative data collected during 21 in‐depth interviews with people across the United Kingdom who were a friend or family member of a woman experiencing DV. An inductive thematic analysis was undertaken and the themes generated were as follows: ‘the context of DV: a chaotic and unpredictable home life’; ‘the roles children assume within households where there is DV including: witness of, victim of and conduit of violence and abuse’,; ‘the impacts of DV on children’; and ‘children's coping and resilience’. The implications of these findings are discussed using a basic needs model lens.     

‘It felt like there was always someone there for us’: Supporting children affected by domestic violence and abuse who are identified by general practice

One in five children in the UK are affected by domestic violence and abuse. However, primary care clinicians (GPs and nurses) struggle to effectively identify and support children and young people living in homes where it is present. The IRIS+ (Enhanced Identification and Referral to Improve Safety) training and advocacy support intervention aimed to improve how clinicians respond to children and young people affected by domestic violence and abuse. IRIS+ training was delivered as part of a feasibility study to four general practices in an urban area in England (UK). Our mixed method design included interviews and questionnaires about the IRIS+ intervention with general practice patients, including children and young people as well as with clinicians and advocacy service providers. We collected the number of identifications and referrals by clinicians of children experiencing domestic violence and abuse through a retrospective search of medical and agency records 10 months after the intervention. Forty-nine children exposed to domestic violence and abuse were recorded in medical records. Thirty-five children were referred to a specialist domestic violence and abuse support service over a period of 10 months. Of these, 22 received direct or indirect support. The qualitative findings indicated that children benefitted from being referred by clinicians to the service. However, several barriers at the patient and professional level prevented children and young people from being identified and supported. Some of these barriers can be addressed through modifications to professional training and guidance, but others require systematic and structural changes to the way health and social care services work with children affected by domestic violence and abuse.     

A before and after study of integrated training sessions for children's health and care services

Recent UK policy drivers such as the National Collaboration for Integrated Care and Support and Making Every Contact Count prioritise integrated care, an approach that seeks to provide more coordinated and seamless health and social care. In children's services, despite many partners, there are challenges around integrating care. A deprived borough of London ran short training and networking sessions for services supporting children and young people. This study examined whether intersectoral training would improve participants' knowledge of local services and joint working (including communication, navigation and confidence in collaboration). As part of a service evaluation, the study utilised a pre–post Likert scale survey design for each training session, a 1‐month follow‐up survey, and telephone interviews with a subsample of participants. The educational intervention was three sets of 1.5 hr educational workshops from December 2016 to February 2017. There were 302 attendances from 202 individuals from the health (n = 99), education (n = 145), social care (n = 39) and voluntary (n = 19) sectors. The pre and post surveys found significant increases in self‐assessed knowledge of health/education/social care/voluntary services and in some elements of joint working. However, these increases were not sustained in any domain after 1 month of follow‐up. There was also no difference in self‐assessments amongst those who attended three sessions compared to those who attended one or two. Telephone interviewees highlighted networking as being helpful and suggested that informative tasks and diverse attendance would be beneficial in future. To conclude, this study suggests that although short‐learning sessions may seem to improve immediate knowledge and some elements of joint working in the short term, any gains are not sustained in the long term. The cost effectiveness of such schemes is in doubt but may be improved by a more targeted delivery of content.     

Theorising health professionals’ prevention and management practices with children and young people experiencing self‐harm: a qualitative hospital‐based case study

Self‐harm in young people remains a significant concern. Studies of emergency departments have centred on negative professional attitudes. There has been limited interrogation and theorisation of what drives such attitudes, and the contexts that sustain them. Adopting a complex systems lens, this study aimed to explore how systems shape professional and patient interactions. It draws upon interviews with healthcare and affiliated professionals (n = 14) in a UK case study hospital, with primary focus on the emergency department. Data were analysed using a thematic approach and the principles of grounded theory. Four themes emerged, with the first three centralising how professionals’ practices operate within: (1) a framework of risk management; (2) expectations of progressing patients through the care pathway; and (3) a culture of specialist expertise, with resulting uncertainty about who is responsible for self‐harm. The fourth theme considers barriers to system change. A small number of participants described efforts to enact positive modifications to practices, but these were frustrated by entrenched system structures. The potential detrimental impacts for patient care and professional wellbeing are considered. Future practice needs systemic action to support professionals in treating patients experiencing self‐harm, while future research requires more ethnographic explorations of the complex system in situ.     

An assessment of the experiences and needs of adolescents with chronic conditions in transitional care: a qualitative study to develop a patient education programme

The transition of adolescents with chronic conditions is a challenging task. This study aimed to explore the experiences and needs of adolescents with chronic conditions in the transition period and to apply these findings to the design of a generic patient education programme. Data were collected from a sample of 29 adolescents with chronic conditions from Northern Germany and Switzerland including a broad range of views due to variation in disease management and organisation of care both in paediatric and adult populations. Participants were interviewed in group (n = 18) or individual (n = 11) interviews between September 2011 and February 2012, and the data were analysed using qualitative content analysis. The findings revealed that the interviewees expressed high levels of competency in the management of their chronic conditions but identified gaps in healthcare and unmet needs during transition. In particular, they believed that they would benefit from opportunities to exchange ideas and more specific information with peers about vocational and medical issues concerning adolescent health. Identified themes reflecting adolescent needs were used to develop the transition workshop including modules regarding the following: transfer to adult medicine, their new role as a patient, orientation within the healthcare system, vocational issues, detachment from parents, social support, contraception, substance abuse, family planning, stress‐management, activation of resources and developing personal goals. The workshop's content was largely generic and included some condition‐specific components. The workshop was designed as a compact 2‐day patient education programme in a group setting for adolescents prior to their transfer to adult care. The guiding principle was the idea of empowerment by supporting the adolescents through various interactive methods to develop adequate knowledge, skills, understanding and motivation regarding their chronic conditions. We conclude that patient education programmes promoting adolescent self‐management and empowerment increase the preparedness for transition.     

Exploration of joint working practices on anti‐social behaviour between criminal justice,mental health and social care agencies: A qualitative study

Although the police play an important role for people with mental health problems in the community, little is known about joint working practices between mental health, social care and police services. There is potential for tensions and negative outcomes for people with mental health problems, in particular when the focus is on behaviours that could be interpreted as anti‐social. This study explores perceptions about joint working between mental health, social care and police services with regard to anti‐social behaviour. We conducted a multi‐method sequential qualitative study in the UK collecting data between April 2014 and August 2016. Data were collected from two study sites: 60 narrative police logs of routinely gathered information, and semi‐structured interviews and focus groups with professionals from a range of statutory and third sector organisations (N = 55). Data sets were analysed individually, using thematic iterative coding before integrating the findings. We also looked at sequencing and turning points in the police logs. Findings mapped on a continuum of joint working practices, with examples more likely to be away from the policy ideal of partnership working as being central to mainstream activities. Joint working was driven by legal obligations and concerns about risk rather than a focus on the needs of a person with mental health problems. This was complicated by different perceptions of the police role in mental health. Adding anti‐social behaviour to this mix intensified challenges as conceptualisation of the nature of the problem and agreeing on best practice and care is open to interpretations and judgements. Of concern is an evident lack of awareness of these issues. There is a need to reflect on joint working practices, including processes and goals, keeping in mind the health and welfare needs of people with mental health problems.