Perceived needs of carers of people with psychosis: An Australian longitudinal population‐based study of caregivers of people with psychotic disorders

Studies have documented the perceived needs of carers of people with psychosis but most recruitment has utilised convenience sampling resulting in limited understanding of carers’ needs. This longitudinal study was conducted within the second Australian prevalence study of psychosis, aiming to obtain generalisable findings regarding perceived needs of carers of people with psychosis. Semi‐structured interviews were conducted with 98 carers of people with psychosis recruited in the Australian prevalence study of psychosis. Seventy‐eight of the carers were reinterviewed 1 year later to measure changes in their perceived needs. Correlational and paired T tests were conducted to identify relationships between perceived needs and carer's health and well‐being, and changes in levels of perceived needs over time. Qualitative responses were structurally coded by segmentation according to the Carers’ and Users’ Expectations of Services—Carer version. Thematic analysis of common words and phrases was undertaken to identify key themes concerning carers’ perceived needs. There was minimal improvement in carers’ perceived needs over time and their needs were closely related to their perception of their own social connectedness, psychological health and quality of life. Five themes were identified: Greater involvement of carers in the treatment plan, provision of relevant information to carers, multiple biopsychosocial support for carers, well‐being and independence interventions for people with psychosis, and choice to care and alternate caring arrangements. Although policy recognises the need to support carers, findings show that focused interventions are required to address carers’ perceived needs more holistically in current mental health services. To support carers’ recovery, services need to include carers in treatment planning, and consider ways to address their needs and improve their own health and well‐being.     

Hidden Children: Perspectives of Professionals on Young Carers of People with Mental Health Problems

Young carers of people with mental health problems are highly hidden, ostracised and vulnerable. To make matters worse, many professionals from the social, health and education sectors are not fully aware of the difficulties and central issues facing young carers of people with mental health problems. In order to make young carers of people with mental health problems more visible and to explore gaps in need and good practice from the perspectives of professionals, 65 participants were interviewed. The sample included professionals from the social, healthcare and voluntary sectors. Respondents were asked to discuss their understanding of young carers and appropriate interventions and methods to address young carers’ needs. Findings highlight: young carers’ isolation, stigma and restricted opportunities; fears involving family separation and child protection; and examples of good professional practice. New findings and examples of good professional practice that provide holistic, sensitive and effective support include: young carer groups and forums; young carer days; raising awareness of young carers in schools, especially via technology such as DVDs and the Internet; and having key workers to befriend young carers so as to advocate for better care, to provide emotional and psychological support and to facilitate young carer involvement.     

Enhancing primary care support for informal carers: A scoping study with professional stakeholders

Informal carers (i.e. people who provide unpaid care to family and/or friends) are crucial in supporting people with long‐term conditions. Caring negatively impacts on carers’ health and experiences of health services. Internationally and nationally, policies, legislation, professional guidance and research advocate for health and care services to do more to support carers. This study explored the views of health and social care providers, commissioners and policy makers about the role and scope for strengthening health service support for carers. Twenty‐four semi‐structured interviews, with 25 participants were conducted, audio‐recorded, transcribed verbatim and analysed by thematic analysis. Three main themes emerged: (a) identifying carers, (b) carer support, and (c) assessing and addressing carer needs. Primary care, and other services, were seen as not doing enough for carers but having an important role in identifying and supporting carers. Two issues with carer identification were described, first people not self‐identifying as carers and second most services not being proactive in identifying carers. Participants thought that carer needs should be supported by primary care in collaboration with other health services, social care and the voluntary sector. Concerns were raised about primary care, which is under enormous strain, being asked to take on yet another task. There was a clear message that it was only useful to involve primary care in identifying carers and their needs, if benefit could be achieved through direct benefits such as better provision of support to the carer or indirect benefit such as better recognition of the carer role. This study highlights that more could be done to address carers’ needs through primary care in close collaboration with other health and care services. The findings indicate the need for pilots and experiments to develop the evidence base. Given the crucial importance of carers, such studies should be a high priority.     

Unmet long‐term care needs and depression: The double disadvantage of community‐dwelling older people in rural China

This study investigates the relationship between unmet long‐term care needs and depressive symptoms among community‐dwelling older people in China. The data come from a nationally representative sample of 1,324 disabled older people from the China Health and Retirement Longitudinal Survey (CHARLS) collected between 2013 and 2014. Regression analyses were conducted to examine the factors associated with unmet needs and the impacts of unmet needs on people’s depressive symptoms. We found that disabled older people living in rural communities have a higher level of unmet needs than those in urban communities. Unmet needs cause more severe depressive symptoms among rural older people, but they do not have a significant impact among urban older people. Depressive symptoms are also affected by people’s health conditions in rural China and by household income in urban China. We argue that older people living in rural communities face a double disadvantage. The first disadvantage relating to unmet needs reinforces the second one relating to mental health. These findings highlight the urgent need for more investment by the Chinese central government in formal social care services and support for carers in rural areas.     

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.     

Mental health carers’ experiences of an Australian Carer Peer Support program: Tailoring supports to carers’ needs

Carer Peer Support Workers (CPSWs) are people who have lived experience as carers/family members of persons with a mental illness, and are employed to provide support to other carers/family members. This qualitative study aimed to explore carers’ experiences within a community‐based CPSW pilot program in an Australian mental health service. Semi‐structured phone interviews were conducted with 20 carer participants in 2015, 5–10 months following their last contact with the service. Thematic analysis uncovered that carers were generally positive about the CPSW's emotional support, practical support, shared lived experience and mutual understanding, and the “ripple effect” the support had on service users. Some carers, on the other hand, felt that the support was unnecessary; either because they believed that it did not have a lasting effect, the focus should have been on the service user, or that they had previously received enough support. Nevertheless, the study highlighted how mental health services could best utilise and benefit from CPSWs. Moreover, to be most useful, the nature of the carer peer support work should be tailored to the specific needs of the carers; which may vary according to their culture, years of caring experience, and previous experiences with mental health services.     

Supporting carers to improve patient safety and maintain their well-being in transitions from mental health hospitals to the community: A prioritisation nominal group technique

Introduction

Carers of people with mental illness may face distinct challenges, including navigating fragmented health and social services during discharge from mental health hospitals. Currently, limited examples of interventions that support carers of people with mental illness in improving patient safety during transitions of care exist. We aimed to identify problems and solutions to inform future carer-led discharge interventions, which is imperative for ensuring patient safety and the well-being of carers.

Methods

The nominal group technique was used which combines both qualitative and quantitative data collection methods in four distinct phases: (1) problem identification, (2) solution generation, (3) decision making and (4) prioritisation. The aim was to combine expertise from different stakeholder groups (patients, carers and academics with expertise in primary/secondary care, social care or public health) to identify problems and generate solutions.

Results

Twenty-eight participants generated potential solutions that were grouped into four themes. The most acceptable solution for each was as follows: (1) ‘Carer Involvement and Improving Carer Experience’ a dedicated family liaison worker, (2) ‘Patient Wellness and Education’ adapting and implementing existing approaches to help implement the patient care plan, (3) ‘Carer Wellness and Education’ peer/social support interventions for carers and (4) ‘Policy and System Improvements’ understanding the co-ordination of care.

Conclusion

The stakeholder group concurred that the transition from mental health hospitals to the community is a distressing period, where patients and carers are particularly vulnerable to safety and well-being risks. We identified numerous feasible/acceptable solutions to enable carers to improve patient safety and maintain their own mental wellbeing.

Patient and Public Contribution

Patient and public contributors were represented in the workshop and the focus of the workshop was to identify the problems they faced and co-design potential solutions. Patient and public contributors were involved in the funding application and study design.     

Estimating service demand for respite care among informal carers of people with psychological disabilities in Australia

Objective: To estimate service demand (willingness to seek or use services) for respite care among informal, primary carers of people with a psychological disability and to describe their characteristics. Methods: Analysis of data from the household component of the 2009 Survey of Disability Ageing and Carers (n=64,213 persons). Results: In Australia in 2009, 1.0% of people aged 15 years or over (177,900 persons) provided informal, primary care to a co‐resident with a psychological disability. One‐quarter (27.2%) of these carers reported service demand for respite care, of whom one‐third had used respite services in the past three months and four‐fifths had an unmet need for any or more respite care. A significantly greater percentages of carers with service demand for respite care spent 40 or more hours per week on caregiving, provided care to a person with profound activity restrictions and reported unmet support needs, compared to carers without service demand. Lack of suitable, available respite care models was a barrier to utilisation. Conclusions: Findings confirm significant service demand for, and under‐utilisation of, respite care among mental health carers. Implications: Increased coverage of respite services, more flexible service delivery models matched to carers’ needs and better integration with other support services are indicated.     

Better medication management for Aboriginal people with mental health disorders: a survey of providers

OBJECTIVE: To explore the experiences and training needs of service providers in relation to medication management for Aboriginal people with mental health disorders. DESIGN: Survey. SETTING: Aboriginal and mainstream health and human service organisations in metropolitan, rural and remote South Australia. SUBJECTS: Aboriginal health workers, nurses, mental health workers, substance misuse workers, managers, liaison officers, social workers, police, pharmacists, general practitioners, community workers, counsellors, paramedics, educators, family support workers and others. RESULTS: The major health service issues for Aboriginal people with mental health disorders and their carers are related to access to, and availability and appropriateness of services. Quality use of medications by Aboriginal clients is influenced by drug and alcohol misuse, cost, compliance, feelings about the value of medicines, sharing of medications and unwanted side-effects. Many workers providing services to Aboriginal people with mental health disorders lack adequate training and/or resources on mental health and safe medication management; yet, are required to provide advice or assistance on these matters. CONCLUSIONS: The survey provides new, reliable evidence relevant to mental health services and medication management for South Australian Aboriginal people. It highlights the major issues impacting on quality of care and service provision, demonstrates the wide range of health and allied workers providing medication advice and assistance to Aboriginal people, and reveals workforce development needs.     

Caring hours and possible need for employment support among primary carers for adults with mental illness: Results from an Australian household survey

Intensive unpaid caring is associated with greater likelihood of not being employed, but impacts for mental health carers specifically remain unknown. This study aimed to: (a) examine the association between caring intensity and not being employed for primary mental health carers, (b) ascertain whether this relationship differs from that for other disability carers, (c) enumerate Australian primary mental health carers with a possible need for employment support and (d) describe these carers’ unmet support needs and barriers to employment. Co‐resident, working age primary mental health (n = 137) and other disability carers (n = 821) were identified in the Survey of Disability, Ageing and Carers (collected July‐December 2015). Multiple logistic regression analyses examined associations between levels of caring intensity (1–9, 10–19, 20–39, 40+ hr/week) and not being employed. A ‘possible need for employment support’ indicator was derived from information about current employment status, caring hours, past impact of caring on employment and desire for more work or workplace accommodations. After controlling for demographic and caring role factors, mental health carers providing 40+ hr of care weekly had greater odds of not being employed compared to carers providing <10 hr (AOR 13.38, 95% CI: 2.17–82.39). For other disability carers, the odds of not being employed were also higher among those providing 20–39 hr of care (AOR 3.21, 95% CI: 2.18–4.73). An estimated 54.1% (95% CI: 43.1–64.8) of carers had a possible need for employment support, with the proportion increasing as level of caring intensity increased. Of carers who were not employed, 42.2% (95% CI: 30.3–55.0) reported a desire to work, and the main reported barrier was no alternative care arrangements or disruption to the person supported. Findings suggest that improving employment participation for mental health carers requires a greater balance between unpaid care and access to formal services for people with mental illness.     

Experiences of end-of-life care in community hospitals

Concerns remain that health and social care services often fail people dying of chronic illnesses other than those with cancer. British government policy aims to improve end-of-life care and to enable people to make choices about place of care near the end of life, with the assumption that home is often the preferred option. However, some elderly people may lack suitable social networks, family carers and other resources to remain at home. Community hospitals offer a potentially accessible resource for local provision of end-of-life care. They have the advantage of being located within easy reach for family members, are staffed by local people and in most of them, general practitioners can maintain continuity of care. This paper examines patients' and family carers' experiences of end-of-life care in community hospitals. In-depth organisational case studies were conducted in six community hospitals in the south of England. Interviews were undertaken with elderly patients dying of cancer and other advanced conditions (n = 18) and their family carers (n = 11). Qualitative analysis of transcribed interviews were undertaken, using the principles of grounded theory. Patients and family carers valued the flexibility, local nature (which facilitated visiting) and personal care afforded to them. Most participants regarded community hospitals as preferable to larger district general hospitals. Our research reveals that these participants regarded community hospitals as acceptable places for end-of-life care. Finally, we discuss the implications of our findings for improving end-of-life care.     

Perceptions of unmet needs for community social care services in England. A comparison of working carers and the people they care for

Previous UK research has found expressed unmet need for services by unpaid working carers and among disabled and older people. There are, however, suggestions from research that views on unmet needs for services differ between carers and care‐recipients. Working carers in the UK say that the care‐recipient is sometimes reluctant to accept services and the few international comparative dyad studies that have been carried out find that carers perceive higher unmet need than care‐recipients. Recent policy discussions in England have also recognised that there may be differences of opinion. We collected data in 2013 from working carer/care‐recipient dyads in England about perceived need for services for the care‐recipient, disability, unpaid care hour provision and individual and socio‐demographic characteristics. We find that care‐recipients as well as their carers perceive high unmet need for services, although carers perceive higher unmet need. For carers, unmet need is associated with the disability of the carer‐recipient and being the daughter or son of the care‐recipient; for care‐recipients it is associated with unpaid care hours, carers’ employment status and carers’ health. The majority of dyads agree on need for services, and agreement is higher when the working carer provides care for 10 hours or more hours a week. Services for care‐recipients may enable working carers to remain in employment so agreement on needs for services supports the implementation of legislation, policy and practice that has a duty to, or aims to, support carer's employment.     

Evaluation of a West Australian residential mental health respite service

Family members continue to be the predominant providers of support, care and accommodation for loved ones with mental health issues, and empirical studies suggest that accessing mental health respite can be helpful for both carers and consumers. However, the availability of, and access to, this respite in Australia is far from optimal. Major issues have also been identified such as low utilisation, the inappropriate and inflexible nature of services and the inability of services to respond to situations where multiple needs exist. This article presents findings from a small evaluation of a pilot residential respite service. Semi‐structured interviews were conducted with eight family members/carers and four consumers using the service, and five service providers. In addition, anonymised sociodemographic information about all users of the service in the first 9 months of its operation were analysed. Reflecting the current limitations around respite options, the majority of family members/carers and consumers were appreciative of, and satisfied with, the service. The research highlighted issues such as availability and suitability of respite, particularly when consumers had multiple and unmet needs. Mental health residential respite is often a stopgap in crisis situations and intersects with the difficulty of planning respite and shortages in affordable supported accommodation. Furthermore, the ramifications of individualised funding for people with “psychosocial disability” in the new Australian National Disability Insurance Scheme (NDIS) remain unclear. While family members and carers may benefit indirectly from NDIS funding, it is especially important at this time that the need for more suitable, recovery‐oriented respite services is highlighted.     

Paid and unpaid carers: their role in and satisfaction with primary health care for people with learning disabilities

To a large extent the health care needs of people with learning disabilities living in the community have been neglected by policy makers, purchasers and providers. One result is that the role of carers, paid and unpaid, in monitoring and promoting health has been ignored. This article reports on interviews with carers and is drawn from a study which examined the delivery of primary health care to people with learning disabilities. A range of topics was covered during interview including: carers’ perceptions of their role, contact with and assessment of general practitioners’(GPs’) skills, difficulties experienced during consultations, views about medication, health promotion and health screening. Results indicated that insufficient attention is paid to the needs of people with learning disabilities in respect of health promotion, health screening and regular hearing and sight tests. Whilst generally satisfied with the care provided by GPs, carers made many suggestions about how to improve the standard of care offered. Suggestions for supporting paid and unpaid carers in order to fulfil their role are made. The need for joint strategies at the operational level and strategic level is also discussed.     

The impact of personalisation on people from Chinese backgrounds: qualitative accounts of social care experience

The limited research that considers people from black and minority ethnic communities' experiences of personalisation tends to focus on personal budgets rather than personalisation per se. This article provides an opportunity to hear the voices of people from Chinese backgrounds and their experiences of personalisation. The study used individual semi‐structured interviews and focus groups to collect data from physically disabled people from Chinese backgrounds who lived in England, were aged between 18 and 70, and received social care. Data were analysed using an iterative and thematic approach, with early analysis informing the subsequent analytical rounds. The findings reveal that personalisation has the potential to transform the lives of people from Chinese backgrounds, especially when tailored support is available for people to understand and access personal budgets and put them to creative use. However, the impact of personalisation is barely evident because few eligible individuals access personal budgets or participate in co‐production. This is related to a lack of encouragement for service users to become genuine partners in understanding, designing, commissioning and accessing a diverse range of social care services to meet their cultural and social care needs.     

‘I know they are not trained in dementia’: Addressing the need for specialist dementia training for home care workers

Global population ageing has meant a rapid increase in the numbers of older people with dementia, most of whom live in their own homes. Staying at home is an important determinant of health and well‐being. As care needs increase, the quality of community support which older people receive directly influences their capacity to remain in their own homes. While many are supported informally by family carers, formal support provided by home care workers often enables them to remain at home for longer period. However, providing community‐based care for people with dementia can be challenging. Workers often lack training in dementia‐specific care for clients with increasingly complex needs, and typically work without direct supervision. As the demand for person‐centred home care for people with dementia increases, specialist dementia training for home care workers is urgently needed. In this qualitative study, we used in‐depth interviews of a purposive sample, comprising 15 family carers and four older people with dementia, to understand the experience of receiving community care. Data analysis was guided by Braun and Clarke's approach to thematic analysis and revealed the following five overlapping themes, relating to home care workers’ understanding of dementia, person‐centred care, communication and rapport, mutual collaboration, and the influence of organisational constraints on continuity of care. Although participants acknowledged that service providers operated under challenging circumstances, they were frustrated with home care workers’ lack of dementia knowledge and inconsistent staff rostering. Conversely, an understanding of the lived experience of dementia, effective communication and rapport, and continuity of care contributed significantly to a positive experience of receiving care. The findings of this study will be used to inform the essential elements of a training program aimed at enabling and empowering a skilled, specialist home care workforce to support older people with dementia to live well at home for as long as possible.     

多元社会参与及家庭支持对中国老年人心理健康的影响研究

目的：了解不同社会参与类型和家庭支持对老年人心理健康的影响及交互作用,为促进老年人心理健康提供决策依据。方法：基于2018年中国老年健康影响因素跟踪调查（CLHLS）数据筛选获得12 686名老年人,使用描述性分析、Pearson相关性检验、二元logistic回归模型研究不同社会参与、家庭支持特征的老年人心理健康现状及相关性,分析其对老年人积极、消极情绪的影响,探讨多元社会参与类型间的交互作用。结果：有社会参与和家庭支持的老年人心理健康较好的发生比高达5.72%~17.50%;休闲娱乐型、社会交往型社会参与及与家人同住对老年人心理健康有显著促进效应,且该两类社会参与间存在显著交互作用,家务型社会参与则对心理健康有负向影响。结论：不同类型社会参与对老年人心理健康的影响存在差异和部分互替性,与家人同住为代表的家庭支持能显著改善老年人的心理健康水平,应鼓励老年人更多地参与社会活动、与家人共同居住,以提高老年人的积极情绪,降低消极情绪的发生风险。