The impact of befriending and peer support on family carers of people living with dementia: A mixed methods study.

BACKGROUND: Volunteer led befriending and peer support is provided to a wide range of people with varying needs. Despite large numbers of such schemes for carers of people with dementia, there is little evidence for any benefits they may offer. The aim of this research was to investigate the impact of befriending and peer support on carers of people with dementia and to explore their experiences of receiving the interventions using a mixed methods approach. METHODS: Nineteen carers of people with dementia were recruited from befriending and peer support services. Carers completed the Hospital Anxiety and Depression Scale (HADS), the Multidimensional Scale of Perceived Social Support (MSPSS) and UCLA Loneliness Scale at baseline, three months and six months. Of the 16 carers who completed the quantitative phase, eight took part in depth semi-structured interviews. RESULTS: A statistically significant increase in perceived social support from a significant other between baseline and three months was found (Z = 2.487, p = 0.013). Qualitative findings showed befriending and peer support to be important sources of emotional and social support for carers, which was facilitated by the volunteers' experiential similarity. CONCLUSION: Volunteer led befriending and peer support offers carers of people with dementia emotional and social support which enables them to cope better with challenges and continue caring. This has important implications for potentially reducing breakdowns in carer mental and physical health. Future research should explore whether these finding are replicable in other locations and in more diverse populations.

Volunteer peer support and befriending for carers of people living with dementia: An exploration of volunteers' experiences.

With ageing populations and greater reliance on the voluntary sector, the number of volunteer-led peer support and befriending services for carers of people with dementia in England is set to increase. However, little is known about the experiences of the volunteers who deliver these interventions, many of whom are former carers. Using in-depth semi-structured interviews with 10 volunteer peer supporters and befrienders, this exploratory study investigated volunteers' experiences of delivering the support, the types of relationships they form with carers and their perceptions of its impact upon them and on carers. Data were analysed using framework analysis. Findings showed that volunteers benefitted from their role due to the 'two-way' flow of support. Experiential similarity and having common interests with carers were considered important to the development of mutually beneficial relationships. Volunteers perceived that carers gained emotional and social support, which in turn improved the carers' coping ability. Being able to see positive changes to carers' lives was important for volunteers to gain enjoyment and satisfaction from their role. However, volunteers also identified challenges with their role, such as dealing with carers' emotions. Future research should investigate ways of reducing potential burden on volunteers and explore the impact of volunteering specifically on former carers of people with dementia.

Peer support for carers: a qualitative investigation of the experiences of carers and peer volunteers.

Being a carer of someone with dementia can be rewarding and also challenging. Volunteer peer support schemes for carers are being introduced, little is known about either their impact on carers and volunteers or about volunteers' and carers' experiences. This study investigated peer volunteer and carer recipient experiences of a peer support service. Thematic analysis of 13 in-depth interviews with 9 carers and 4 peer volunteers revealed that peer support helped both carers and peer volunteers through the realization that they were "not alone" in their experiences and emotions. Additional carer benefits included opportunities to talk freely about difficult experiences and learning how others cope. Volunteers found their role rewarding, describing satisfaction from putting their own experiences to good use. These findings highlight the isolation and exclusion experienced by current and former carers of people with dementia and draw attention to the benefits of peer support for both the groups.

Respite: carers' experiences and perceptions of respite at home.

BACKGROUND: Informal carers play an important role in supporting people with long-term conditions living at home. However, the caring role is known to have adverse effects on carers such as poorer emotional health and social isolation. A variety of types of respite may be offered to carers but little is known about the benefits of respite, carers' experiences with it, or their perceptions of care workers. This study therefore investigated these experiences and perceptions. METHOD: Recorded, semi-structured interviews were undertaken with twelve carers receiving weekly four-hourly respite. Carers were either caring for a person over sixty or were over sixty themselves. Interviews were analysed thematically. RESULTS AND DISCUSSION: Respite sometimes alleviated carers' constant sense of responsibility for their cared for. Trust, whether in the service provider or individual care workers, was essential. Carers lacking this trust tended to perceive respite as less beneficial. Low expectations were common with carers often unwilling to find fault. Care workers were frequently seen as very kind with some carers valuing their company. Care workers who were flexible, communicated well and responded to the cared for's needs were valued. Stimulation of the cared for during respite was very important to most carers but the perceived benefits for carers were often very individual. Many carers used respite to catch up with routine, domestic tasks, rarely using it to socialise. CONCLUSIONS: For many carers, respite was a way of maintaining normality in often difficult, restricted lives. Respite allowed continuation of what most people take for granted. Carers frequently viewed respite as intended to improve their cared for's quality of life, rather than their own. This centrality of the cared for means that carers can only really benefit from respite if the cared for is happy and also seen to benefit. Future research should investigate the perspectives of carers and their cared for, focussing on different demographic groups by features such as age, gender, ethnicity and diagnostic groups. However, without greater clarity about what respite is intended to achieve, clear evidence of a positive impact of this intervention may remain difficult to identify.

Positive experiences of caregiving in stroke: a systematic review.

OBJECTIVE: To identify positive experiences of caregivers, who are unpaid carers not statutory, looking after stroke survivors by systematically reviewing published quantitative and qualitative studies. DATA SOURCES: Databases were searched from 1999 to 2009 through Medline, Cumulative Index to Nursing and Allied Health Literature (CINAHL), British Nursing Index (BNI), Allied and Complimentary Medicine Database (AHMED), PsychINFO, EMBASE and Social Care Online. Reference tracking of selected papers was carried out and references of recent reviews related to stroke caregiving were also scrutinised. REVIEW METHODS: The relevance of studies was ascertained by the two authors from abstracts and inclusion and exclusion criteria were then applied. Where there were differences of opinion, full copies were read and consensus achieved by discussion. RESULTS: Three hundred and twenty-three studies were found and nine selected. Exploratory and cross-sectional studies prevailed. A range of positive experiences confirmed the findings of previous studies in both stroke and other long-term illness; care recipients progress was the most common source, other aspects included strengthened relationships, feeling appreciated, increased self-esteem. Positive experiences were associated with coping strategies. Changes in positive experiences over time were noted and differences too, for example, between new and experienced caregivers. Conceptual and methodological issues remain. CONCLUSIONS: Caregivers were able to identify positive experiences of caregiving providing a more balanced view of their role. Helping caregivers to identify their own positive experiences will encourage them to manage their situation. Longitudinal research is needed to track changes and positive influences on caregiving. [ IMPLICATIONS FOR REHABILITATION: • There is some evidence that caregivers are able to identify what they value providing a more positive and balanced view of caregiving experiences other than just negative aspects.• Positive aspects of coping are associated with positive experiences. Offering training to caregivers of a cognitive and behavioural nature, which includes a focus on positive experiences, may be beneficial and needs further consideration.• The diversity of caregivers' experiences ­ both positive and negative ­ should be taken into account by clinicians when supporting them]

General practitioners, primary care and support for carers in England: can training make a difference?

As a part of the national carers' strategy, the Department of Health commissioned six pilot workshops spread across England for General Practitioners (GPs) and other primary healthcare workers. The six workshops were held during September and October 2009, arranged by the Royal College of General Practitioners and planned in consultation with the Princess Royal Trust for Carers. The workshops were delivered by one of two GPs and by a carer. The Department of Health commissioned an evaluation of the workshop programme. This paper reports on the attitudes towards and knowledge of carers by GPs and other primary care workers, such as community matrons, practice nurses, healthcare assistants, practice managers and receptionists. It also tracks changes over time from the questionnaire responses pre- and post-workshop and 3 months later in the GPs' and other primary care workers' response to carers. Prior to the workshops, GPs and other primary care workers saw primary care as having a significant role in directly assisting carers, especially with emotional support and in signposting to other services. However, there was a lack of knowledge about issues facing carers, limited confidence in assisting carers and few services within the primary care teams directly focussed on carers. The workshops were regarded positively by those who attended, and the evaluation found that there was a positive impact with GPs and other primary care workers reporting specific actions they had taken post-workshop to assist carers, greater confidence and awareness in working with carers, and increased knowledge about carers. The paper concludes by recommending how the pilot programme might be rolled out more widely.

Perceptions of the role of general practice and practical support measures for carers of stroke survivors: a qualitative study.

BACKGROUND: Informal carers frequently suffer adverse consequences from caring. General practice teams are well positioned to support them. However, what carers of stroke survivors want and expect from general practice, and the practical support measures they might like, remain largely unexplored.The aims of this study are twofold. Firstly it explores both the support stroke carers would like from general practice and their reactions to the community based support proposed in the New Deal. Secondly, perceptions of a general practice team are investigated covering similar topics to carer interviews but from their perspective. METHODS: Semi-structured interviews were conducted with 13 stroke carers and 10 members of a general practice team. Carers' experiences and expectations of general practice and opinions of support measures from recent government policy were explored. General practice professionals were asked about their perceived role and their perceptions of carers' support needs. Interviews were content analysed. RESULTS: Carers' expectations of support from general practice were low and they neither received nor expected much support for themselves. General practice was seen as reactive primarily because of time constraints. Some carers would appreciate emotional support but others did not want additional services. Responses to recent policy initiatives were mixed with carers saying these might benefit other carers but not themselves.General practice professionals' opinions were broadly similar. They recognise carers' support needs but see their role as reactive, focussed on stroke survivors, rather than carers. Caring was recognised as challenging. Providing emotional support and referral were seen as important but identification of carers was considered difficult. Time constraints limit their support. Responses to recent policy initiatives were positive. CONCLUSIONS: Carers' expectations of support from general practice for themselves are low and teams are seen as reactive and time constrained. Both the carers and the general practice team participants emphasised the valuable role of general practice team in supporting stroke survivors. Research is needed to determine general practice teams' awareness and identification of carers and of the difficulties they encounter supporting stroke carers. Carer policy initiatives need greater specificity with greater attention to diversity in carer needs.

General practitioners and carers: a questionnaire survey of attitudes, awareness of issues, barriers and enablers to provision of services.

BACKGROUND: Approximately one in ten of the UK population are unpaid carers supporting a family member or friend who could not manage without their help, saving the UK economy an estimated £87 billion. This role is known to sometimes have a negative impact on carers and to require support both informally and from statutory services. General practice is a first point of contact for carers but research investigating general practitioners' (GPs') attitudes towards carers and awareness of issues facing carers is rare. This study therefore aimed to identify GPs' attitudes, awareness of issues, and perceptions of the barriers and enablers to provision of services. METHODS: Using a self-completion questionnaire distributed at a series of workshops, this study investigates GPs' attitudes to carers; awareness and knowledge of carers' issues; services offered in general practice and barriers to supporting carers. RESULTS: Seventy eight out of a total of 95 GPs (82% response rate) from a variety of areas in England completed the questionnaires. The GPs identified time, resources and lack of knowledge as barriers, but only 9% agreed with the statement that there is little support they can offer carers. However, nine in ten GPs (89%) feel they have insufficient training here and approximately half of them (47%) lack confidence that they are meeting carers' needs. Confidence in identifying carers is also low (45%). Issues that GPs would look out for amongst carers include emotional and physical health problems and financial and isolation difficulties. GPs specifically highlighted educational and isolation issues for young carers. Few services were described that targeted carers. CONCLUSIONS: GPs recognise that they have an important role to play in supporting carers but would like training and support. Further investigation is needed both to determine how best to train and facilitate GPs and general practice teams in their role in supporting carers and to identify what carers need and want from general practice. Identifying carers' leads or carers' champions amongst practice staff is possibly one way forward. Given the proposed greater commissioning role for primary care, greater understanding here is particularly important.

An exploratory study of anxiety in carers of stroke survivors.

AIMS AND OBJECTIVES: To investigate anxiety in informal carers of stroke survivors in the first three months after discharge. BACKGROUND: Informal carers, also called caregivers, play a vital role in supporting stroke survivors. However, caring for stroke survivors can have adverse consequences amongst carers such as burden, stress and reduced quality of life. Emotional distress is also commonly reported but anxiety has received less attention than depression. DESIGN: Prospective, longitudinal, descriptive study. METHOD: Forty-five carers completed the Hospital Anxiety and Depression Scale on two occasions - within one month and at three months after discharge from stroke and rehabilitation units. RESULTS: Carers were more likely to have scores indicating anxiety than depression. In the first month, half the carers (51·1%) scored in the cut-off for anxiety and a third were in the cut-off for depression (31·1%). At three months, the picture was very similar with nearly identical proportions in the anxious and depressed categories (48·9% and 28·9%, respectively). Changes in numbers of cases of anxiety and depression and in mean anxiety scores were non-significant but there was a significant decrease in depression scores (p=0·048). Fourteen carers (31·1%) at one month and eleven (24·4%) at three months fell into both anxious and depressed categories. CONCLUSIONS: Anxiety is a relatively neglected emotional outcome in stroke carers. Our study suggests anxiety is an important issue very early in caring whilst other research suggests it remains prevalent for many months. Given the significant role carers play in rehabilitation of stroke survivors, greater recognition of their emotional state is required. Further, longitudinal research with larger sample sizes from a range of geographical areas and improved understanding of factors associated with anxiety is needed. RELEVANCE TO CLINICAL PRACTICE: Nurses working in the community are ideally placed to identify and support carers suffering from anxiety.

Informal caring for stroke survivors: meta-ethnographic review of qualitative literature.

Stroke is a very common cause of adult disability often leaving stroke survivors dependent on others. Much of this support comes from informal carers. Research has demonstrated the importance of these carers to survivors' recovery but also suggests that caregiving has adverse consequences. Meta-ethnography was applied to review qualitative research looking at informal stroke carers' experiences and responses to caring. Electronic databases from 2006 to 2009 were searched and after application of inclusion and exclusion criteria, seven studies were reviewed. The experience of caring for stroke survivors centres around change and loss overlaid with uncertainty. Change includes changes in roles and relationships. Losses include former relationships, autonomy and taken-for-granted futures. These challenge carers' perception of their identity. Carers respond cognitively and practically and attempts to reconstruct their lives may lead to acceptance and adjustment. This process is one of biographical disruption for carers but can result in personal growth. If carers and stroke survivors are to be supported, acknowledging specific issues including role and relationship changes and perceptions of reduced autonomy may be more valuable than attempting to reduce carer burden or strain. Clinicians frequently only see families over short periods and may therefore have little understanding of the major, long-term disruptive impact of caregiving. If professionals working with families of stroke survivors are made aware of this and of the necessity for carers to come to terms with their changed roles and identities, they will be better equipped to understand and respond to carers' practical and emotional needs.

Loss of autonomy, control and independence when caring: a qualitative study of informal carers of stroke survivors in the first three months after discharge.

PURPOSE: Stroke has far reaching effects on both stroke survivors and their informal carers. Research has highlighted changes in autonomy of stroke survivors, but insufficient focus has been put on the associated reduced control and independence of their informal carers. This study investigates the experiences of informal carers of stroke survivors from discharge to 3 months later. METHOD: A purposive sample of 31 informal carers was interviewed in depth just prior to discharge, 1 month and 3 months post-discharge. Interviews lasted 30-90 min and were audio-taped and transcribed. Data analysis was ongoing starting during data collection and ending with themes that described and helped understand carers' experiences. RESULTS: Carers described reductions in their autonomy and independence but also over time identified strategies to manage these changes and to increase control in their lives. These strategies included selection, optimisation, compensation, asking for and accepting help and negotiation. Some carers, especially older carers and those with prior caring experience, were less likely to describe changes in autonomy and control. CONCLUSIONS: Carers' reduced autonomy and independence should be recognised by practitioners and service providers. Helping carers to negotiate choice and control over the support offered could help increase their autonomy and independence. To offer improved support to these carers, greater attention should to given to the diversity of their situations and experiences.

Managing uncertainty in life after stroke: a qualitative study of the experiences of established and new informal carers in the first 3 months after discharge.

BACKGROUND: Caring for stroke survivors at home can have an enormous impact on informal carers and past research has tended to focus on the negative emotional consequences of caring, with few identifying any positive outcomes. Despite an awareness that the experiences of these carers change over time, there is a dearth of qualitative studies investigating carers' experiences over time. OBJECTIVES: To investigate the experiences of informal carers of stroke survivors over time. DESIGN: Qualitative study. SETTING: Carers of stroke survivors from one acute and two rehabilitation units in South-West London. PARTICIPANTS: A purposive sample of 31 informal carers of stroke survivors discharged from inpatient treatment and rehabilitation returning home were interviewed. The majority of participants' were spouses but they also included adult sons and daughters. Most participants were post-retirement age. METHODS: Audio-taped in-depth interviews of 30-90 min duration were undertaken at three time points-close to discharge, 1 month and 3 months post-discharge. Interviews were transcribed immediately after each interview. Analysis was an ongoing process starting during data collection and ending with themes. As themes emerged they were identified and discussed with other members of the team so that any patterns across the interviews were noted. Themes were followed up at subsequent interviews. This process enabled progressive focusing of ideas and also validated respondents' accounts. RESULTS: There were a total of 81 interviews and these carers were similar demographically to other carers in stroke research. A central theme of uncertainty with a number of other interconnected themes were identified. Other themes including adopting routines and strategies, absolute and relative positives and questioning the future could be seen to both influence and be influenced by uncertainty. These themes can all be related to the changes in carers' lives or the management of uncertainty around stroke. Differences in experiences and coping strategies were identified between new carers and those with prior caring experience. CONCLUSIONS: Carers experience considerable uncertainty when caring for stroke survivors. Living with uncertainty is central to these carers' experiences and this should be acknowledged by clinicians when supporting stroke survivors and carers. Encouraging the identification of the positive aspects of caring may help carers manage the challenges and uncertainties created by stroke.

Informal primary carers of stroke survivors living at home-challenges, satisfactions and coping: a systematic review of qualitative studies.

PURPOSE: To summarize qualitative studies from the last decade that focus on experiences of caring for stroke survivors and to describe challenges, satisfactions and coping strategies. METHODS: A systematic review of qualitative studies identified from English language medicine, nursing and psychology databases from 1996-2006 was undertaken. RESULTS: Seventeen qualitative studies fitting the inclusion and exclusion criteria, mostly from the USA, were identified. All used carer interviews. These studies corroborate the quantitative research, commonly describing difficulties including emotional responses, uncertainty and associated information and training needs. However, compared with quantitative research, qualitative studies provide a more detailed, complete picture of carers' experiences and identify additional areas including role and relationship changes, positive outcomes and coping strategies. CONCLUSIONS: Qualitative studies add significantly to our understanding of carers' experiences. Caring for stroke survivors is often challenging but focusing on the difficulties and not drawing attention to successful management strategies and satisfaction reported by carers, limits understanding and reduces the chances of providing appropriate support. Future qualitative research should consider the implications of the timing of collection more carefully and should move away from simple content or thematic analysis which tends to emphasize similarities amongst carers and should now focus on understanding carer diversity. Acknowledging this diversity should maximize the chances of providing appropriate support.

Informal carers of stroke survivors--factors influencing carers: a systematic review of quantitative studies.

PURPOSE: Despite increasing evidence of adverse effects on informal carers of caring for stroke survivors, little is known about the characteristics of carers and survivors that influence carer outcomes. The purpose of this review is to summarize factors influencing outcomes in carers of stroke survivors. METHODS: A systematic review of studies identified from English language medicine, nursing and psychology databases from 1996-2006 was carried out. RESULTS: Thirty-nine studies were identified. Studies from Europe and the USA investigating negative carer outcomes dominated. Carer psychological characteristics and survivor disability were shown to influence carer outcomes. However, the diversity of carers and outcomes investigated and differences in study timing post-stroke make generalizations difficult. CONCLUSIONS: Despite improvements in study design over the last two decades, atheoretical studies employing overlapping concepts and poorly defined participants still dominate. Future studies should have theoretical underpinning and should acknowledge the diversity of carers, survivors and their situations. In addition, future emphasis on positive carer outcomes may improve understanding of protective carer factors.

Changing needs of Chinese family caregivers of stroke survivors.

AIM: To examine the changing needs of Chinese family caregivers before and after stroke survivors' discharge from hospital. BACKGROUND: Stroke ranks third as the most common cause of death in Hong Kong and is the leading cause of adult disability. Community care has been adopted as the major source of care for older people in Hong Kong and this has impacted on family caregivers. DESIGN AND METHODS: This is a descriptive-correlational design using a within-subjects design. The needs of 40 Chinese family caregivers who met the inclusion criteria were assessed before discharge and two weeks later using the Carer Assessment Scale, Cost of Care Index and one open-ended question. Modified Barthel Index measured the functional ability of stroke survivors. RESULTS: Family caregivers are able to anticipate most of their needs and to make provision to meet the basic practical needs before discharge. Although needs changed after discharge the four most important needs persisted. These were associated with emotional and psychological problems and financial difficulties. Discharge destinations made no difference to the total scores obtained using the above scales. CONCLUSIONS: This study provides information about need at a time of transition in an under-researched population of Chinese caregivers. Assessment of need is important with Chinese family carers in order to identify focused interventions in a population, i.e. reluctant to make their needs known to professional services. More research about caregiving problems for Chinese family caregivers at the transition from hospital to community is required. RELEVANCE TO CLINICAL PRACTICE: Ongoing need assessment by nurses who are in regular contact with caregivers in hospital and community will enable appropriate interventions such as providing education and emotional support both before and after discharge to be offered to Chinese communities.

Family carers of stroke survivors: needs, knowledge, satisfaction and competence in caring.

PURPOSE: To examine the support required by family carers for stroke survivors. METHODS: Forty-two family carers were recruited for surveys of needs, knowledge, satisfaction, and competence in caring before and 4 - 6 weeks after discharge from an Acute Stroke Unit (ASU). RESULTS: Information deficits about dealing with psychological, emotional, and behavioural problems and local service information were priorities before and after discharge. Younger female carers (under 56 years) were least satisfied with communication with ASU staff. Face to face contact was valued. After discharge younger female carers, particularly of non-White ethnic groups, reported lower levels of competence in caring and higher burden. Knowledge of stroke risk factors was low in all groups. High satisfaction with treatment and therapy in the ASU, was not transferred to the community. Carers reported feeling alone and described uncoordinated services. CONCLUSIONS: Carers are able to anticipate and prioritise their needs, value communication with staff and involvement with discharge-planning, but particular difficulties were experienced by younger female carers and those from non-White ethnic groups. This requires particular attention when developing targeted interventions for family carers from a mixed ethnic community. In-depth and longitudinal studies are needed to detail psychosocial needs and guide practice particularly amongst non-White family carers.

Identifying research priorities in nursing and midwifery service delivery and organisation: a scoping study.

This paper reports on a scoping study commissioned by the National Co-ordinating Centre Service Delivery and Organisation (NCCSDO) Research and Development (R&D) to identify priorities for nursing and midwifery research funding in England and Wales. The study comprised three strands (i) nationally held focus groups with service user representatives (32, plus six written submissions) (ii) semi-structured telephone interviews with 64 stakeholders (nursing, midwifery, medical, social care and allied health professionals; research commissioners; policy makers; educators; managers; researchers) and (iii) literature analysis. Five priority areas for research were identified-appropriate, timely and effective interventions; individualised services; continuity of care; staff capacity and quality; user involvement and participation-from which exemplar research questions and issues for strategic commissioning are suggested.

The context, measures and outcomes of psychosocial care interventions in long-term health care for older people.

This paper examines the psychosocial dimensions of long-term care with reference to the new International Classification of Functioning, Disability and Handicap (ICIDH 2) and to research conducted in Hong Kong. It also draws on selected international literature about older people. It discusses the different ways in which information can be gained about the personal, social and emotional processes of rehabilitation that influence outcomes and raises methodological questions about the study of interventions. Outcomes that are sensitive to psychosocial interventions and that take account of the elderly person's own perspective are identified as important challenges for nurses and other professionals in the multidisciplinary team, in order to respond to an individualized approach to long-term care. It is concluded that gaining a better understanding of the psychosocial dimensions of long-term care will enhance professional practice and benefit older people and their carers.

A portrait of district nursing: its contribution to primary health care.

This paper explores the role and contribution of district nursing within primary health care. Examples of how this service is organised within different health care systems are used to discuss the context-dependent nature and challenges of the work. By drawing on UK policy change, health priorities and recent research into district nursing, the paper concludes that, in attempting to deal with the challenges of health care in the 21st century, the significance and potential of district nursing services are frequently overlooked. It is recommended that a research strategy for district nursing should build on the profession's comprehensive understanding of the needs of families and communities and should aim to provide evidence for practice that will further improve patient and client outcomes.