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Expert carers

The following resources examine carers as experts in the needs of those they care for.

Click on the title of any resource to find out more about the source of the information such as the type of reference, ISBN/ISSN, publication year, keywords. A number of these fields can be used to find further resources i.e. with the same keywords, or by the same author using the links on the right-hand side and within the Key Information box.

You can also click on an author's name in the list below to find further resources by that author, and use the DOI and other links to access the original source material (note: some source materials require subscription or permission to access).

How and why should we engage parents as co‐researchers in health research? A scoping review of current practices

Background: The importance of engaging parents in health research as co‐researchers is gaining growing recognition. While a number of benefits of involving parents as co‐researchers have been proposed, guidelines on exactly how effective engagement can be achieved are lacking. The objectives of this scoping review were to (i) synthesize current evidence on engaging parents as co‐researchers in health research; (ii) identify the potential benefits and challenges of engaging parent co‐researchers; and (iii) identify gaps in the literature.

Methods: A scoping literature review was conducted using established methodology. Four research databases and one large grey literature database were searched, in addition to hand‐searching relevant journals. Articles meeting specific inclusion criteria were retrieved and data extracted. Common characteristics were identified and summarized.

Results: Ten articles were included in the review, assessed as having low‐to‐moderate quality. Parent co‐researchers were engaged in the planning, design, data collection, analysis and dissemination aspects of research. Structural enablers included reimbursement and childcare. Benefits of engaging parent co‐researchers included enhancing the relevance of research to the target population, maximizing research participation and parent empowerment. Challenges included resource usage, wide‐ranging experiences, lack of role clarity and power differences between parent co‐researchers and researchers. Evaluation of parent co‐researcher engagement was heterogeneous and lacked rigour.

Conclusions: A robust evidence base is currently lacking in how to effectively engage parent co‐researchers. However, the review offers some insights into specific components that may form the basis of future research to inform the development of best practice guidelines.

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Mothers as facilitators for a parent group intervention for children with Congenital Zika Syndrome: Qualitative findings from a feasibility study in Brazil

Background: The Zika virus outbreak in Brazil (2015-2016) affected thousands of children who were born with Congenital Zika Syndrome (CZS). Families play an important role in their care of children with complex needs, yet their knowledge, experience and skills are rarely harnessed in existing interventions to best support these families.; Objective: This study explores the use of mothers as facilitators for a community-based group intervention for children with CZS and their caregivers in Brazil.

Methods: Four facilitators were trained to deliver the 10-week intervention called "Juntos". Two were mothers of a child with CZS ("expert mothers") and two were therapists (speech therapist and physiotherapist). The intervention was delivered to three groups, generally including 8-10 caregivers. Two researchers, who were psychologists, observed the groups and held focus group discussions at the end of each session. They undertook semi-structured interviews post intervention with a purposive sample of caregivers, and with the facilitators. Observation notes were collated and summarised. Transcripts were transcribed and thematically analysed using five elements to assess feasibility: acceptability, demand, implementation, practicality and adaptation.

Results: The use of expert mothers as facilitators was considered to be acceptable and there was demand for their role. Their experiential knowledge was viewed as important for sharing and learning, and supporting and encouraging the group. The intervention was delivered with fidelity by the expert mothers. The practicality of the intervention was facilitated by holding the group sessions in the community, providing transport costs to facilitators and participants, paying expert mothers and therapist facilitators equally and supporting the expert mothers through a mentorship programme. Equal payment with the therapist enabled the expert mothers to better facilitate the groups, through increased confidence in the value of their role. Adaptation of the intervention included development of video resources and mentoring guidelines.

Conclusion: The use of expert mothers as facilitators of caregiver groups provides a unique approach to harness the knowledge, experience, and skills of families to provide care, and is likely to be feasible in similar contexts.

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Hospitalized Children - Parents' and Nurses' Collaboration in Procedural Situations

Background: When children are hospitalized, collaboration between parents and nurses is initiated. This qualitative study explored parents' and nurses' experiences of collaboration, and the sharing of responsibility and tasks in the care of hospitalized children regarding procedural and treatment situations.

Methods: A hermeneutic, phenomenological approach was used, which included field study and interviews. Participants included 11 children hospitalized in a general medical pediatric unit with their parents (3 fathers and 9 mothers) and the 17 nurses (all female) who cared for them. The children were between 1 and 6 years old (3 boys and 8 girls), and had various medical diagnoses.

Findings: Parents and nurses collaborated and shared responsibilities and tasks in caring for the children in procedural and treatment situations by building relationships with the children, motivating and distracting the children, and causing discomfort and comforting the children. In this way, while carrying out procedures and treating the children, nurses and parents alternated responsibilities and tasks. Caring in these situations was characterized by a dynamic and flexible collaboration for the children's best interests.

Conclusions: This study reveals the dynamics of collaboration and a sharing of responsibility and tasks between parents and nurses. This study highlights that nurses must be aware of parents' contributions and competence in terms of collaboration in both procedural and treatment situations.

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Mastery and Longevity in Spousal Caregivers of Persons with Dementia

Objective Researchers have consistently shown that providing care in a gradually deteriorating situation, such as dementia, can be stressful and detrimental to the caregiver's (CG) health. Although stressor appraisal is important in understanding variability in CG outcomes, the role of personal mastery, a coping resource, in shaping CG's health outcomes has not been considered. The primary goal of this paper was to determine whether personal mastery is associated with a survival advantage for spousal CGs of persons with dementia. Methods This study assessed the association of CG burden and personal mastery with longevity over a 10-year period in 71 spousal CGs of persons initially diagnosed with mild cognitive impairment. Results Over the 10 years, 16 of 71 CGs (23%) died. Cox regression models with right censoring of CGs' time to death showed that after adjusting for the health of family CG, spousal CGs who reported high levels of burden had an 83% reduced risk of death when they also reported high personal mastery (hazard ratio [HR] = 0.17, 95% confidence interval [CI] 0.04, 0.65). Conclusions Findings have implications for support programs that help build personal mastery. 

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Comparing Symptom Ratings by Staff and Family Carers in Residents Dying in Long-Term Care Facilities in Three European Countries, Results From a PACE Survey

Context Symptom management is essential in the end-of-life care of long-term care facility residents. Objectives To study discrepancies and possible associated factors in staff and family carers' symptom assessment scores for residents in the last week of life. Methods A postmortem survey in Belgium, The Netherlands, and Finland: staff and family carers completed the End-of-Life in Dementia-Comfort Assessment in Dying scale, rating 14 symptoms on a one-point to three-point scale. Higher scores reflect better comfort. We calculated mean paired differences in symptom, subscale, and total scores at a group level and inter-rater agreement and percentage of perfect agreement at a resident level. Results Mean staff scores significantly reflected better comfort than those of family carers for the total End-of-Life in Dementia-Comfort Assessment in Dying (31.61 vs. 29.81; P < 0.001) and the physical distress (8.64 vs. 7.62; P < 0.001) and dying symptoms (8.95 vs. 8.25; P < 0.001) subscales. No significant differences were found for emotional distress and well-being. The largest discrepancies were found for gurgling, discomfort, restlessness, and choking for which staff answered not at all, whereas the family carer answered a lot, in respectively, 9.5%, 7.3%, 6.7%, and 6.1% of cases. Inter-rater agreement κ ranged from 0.106 to 0.204, the extent of perfect agreement from 40.8 for lack of serenity to 68.7% for crying. Conclusion There is a need for improved communication between staff and family and discussion about symptom burden in the dying phase in long-term care facilities.

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Characteristics of the skills of caregivers of people with dementia: observational study

Background: Due to demographic change within an aging population as announced by the WHO, the involvement of caregivers is essential. Caregivers are required to change their roles within the family unit. Such life transitions experienced by caregivers to people confronted with dementia-type pathologies are sometimes difficult, necessitating the acquisition and development of certain skills. Few studies have shown that caregivers develop specific and essential skills to promote quality care and safety. To characterize their skills, there is a need to identify the abilities, knowledge, resources, obstacles and constraints that contribute to caregivers' transitions. The research question for this study was: What skills do caregivers use to care for their loved one with dementia? Methods: Qualitative observational research based on the epistemological paradigm of socioconstructivist knowledge was conducted. The study was carried out in the canton of Geneva and recruitment was carried out through the participation of the Alzheimer's association and the association for the support and assistance of elderly people in medical and social institutions and their families (APAF). Observations and semi-structured interviews were conducted in the homes of 14 family carers caring for their loved one with dementia. The observations were transcribed on observation grids and the interviews were recorded. Subsequently, according to the classic distinction of Denzin (Interpretive interractionism, 2001), we analysed the observation notes and verbatims, then as recommended by Miles et al. (Qualitative data analysis: a methods sourcebook, 2014), two researchers triangulated the results. Results: The results identified five types of situations regularly experienced by caregivers. The study characterized 11 skills that caregivers use to cope with their daily lives. The learning process and maladaptive behaviours in caring for their loved ones with dementia were also highlighted. Conclusion: This study was able to point out that today's caregivers have developed more competency than their predecessors. This evolution can be explained by new paradigms of care requiring caregivers to be more involved. Although some caregivers need training, others through their experiences can act upon and provide knowledge. To improve the quality and safety of care for people with dementia, this expertise can be the subject of partnerships between caregivers and health care staff. 

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Caregivers' engagement during in-hospital care of sABI's patients: Evaluation of informal co-production from the health providers' perspective

One of the challenges of providing healthcare services is to enhance its value (for patients, staff and the service) by integrating the informal caregivers into the care process, both concretely managing their patient's health conditions and treatment (co-executing) and participating in the whole healthcare process (co-planning). This study aims at exploring the co-production contribution to the healthcare process, analysing whether and how it is related to higher caregivers' satisfaction with service care and reduced staff burnout, in the eyes of the staff. It also investigated two possible factors supporting caregivers in their role of co-producers, namely relationship among staff and informal caregivers related to knowledge sharing (i.e. an ability determinant supporting co-production) and related to role social conflict (i.e. a willingness determinant reducing co-production). Results of a structural equation model on a sample of 119 healthcare providers employed by neurorehabilitation centers in Italy with severe acquired brain injury confirmed that knowledge sharing positively related with caregivers' co-executing and co-planning. Also, social role conflict was negatively related with co-executing but positively with co-planning. Furthermore, co-planning resulted in being unrelated to both outcomes, whereas co-executing was associated with caregivers' satisfaction, as measured by staff perceptions. Overall, our data provided initial empirical evidence supporting the ability of the determinant's contribution in allowing informal caregivers to assume an active role in both co-production domains. Furthermore, as expected, the role of conflict willingness determinant was found to be a hindering factor for co-executing but, conversely, a trigger for co-planning. This result should be considered more carefully in future studies.

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Piecing the Patient Story Back Together: Why the Patient and Caregiver Contribution Matters

Clinicians make decisions based on a large and complex patient information space in time pressured situations. Through continuity, experience, and privileged knowledge, the patient and caregiver(s) are in a position to support clinician decisionmaking through information delivery. For example, they may make salient relevant information or provide an integrated patient story to help clinicians overcome challenges of making decisions based on incomplete information. Recommendations of engaging patient/caregiver(s) include fostering a culture of listening by clinicians, speaking up by patient/caregiver(s), effective patient education and health information technology, and family-centered rounding and hand-offs. Using a lived experience, I illustrate the value of the potential impact of caregiver's informational contribution to patient safety.

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Psychometric evaluation of the family caregiver ICU delirium knowledge questionnaire

Background Delirium is a common condition in critically ill patients, affecting nearly half of all patients admitted to an intensive care unit (ICU). Family caregivers of critically ill patients can be partners in the early recognition, prevention and management of delirium provided they are aware of the signs/symptoms and appropriate non-pharmacological strategies that might be taken. Valid, reliable instruments that assess family caregiver knowledge are essential so that nurses can prepare family caregivers to be effective partners. The purpose of the current study was to (a) adapt an existing caregiver delirium knowledge questionnaire (CDKQ) for use by nurses to measure a family caregiver's delirium knowledge in the ICU; and (b) examine the psychometric properties and structure of the adapted Caregiver ICU Delirium Knowledge Questionnaire (CIDKQ). Methods In this cross-sectional study, a multidisciplinary team developed the 21-item CIDKQ (possible score range: 0-21) and administered it to 158 family caregivers of critically ill patients. Descriptive statistics were examined for all variables. The CIDKQ was analyzed for face validity, content validity, reliability and internal consistency. Results The mean CIDKQ score was 14.1 (SD: 3.5, range = 2 to 21). Path analysis revealed that a family caregiver's delirium knowledge in the actions and symptoms dimensions had a direct effect on knowledge of delirium risk factors. The CIDKQ was found to have face validity and reliability (Cronbach's alpha = 0.79). Conclusions The findings indicated good validity and reliability of the CIDKQ as a measure of ICU delirium knowledge in family caregivers of critically ill patients.

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Cygnus: a psychoeducational group for carers of people with a personality disorder

National Institute for Health and Care Excellence guidance suggests that carers of individuals with a diagnosis of borderline personality disorder experience high levels of psychological distress, yet few services in the UK offer specific support to this group of carers. This article will describe the development of a psychoeducational carers' group based on schema theory (Young et al, 2003), including the development of the role of carer experts-by-experience as group co-facilitators. Initial outcome data from the pilot suggest that carers are highly satisfied with the group and that it improves their knowledge, understanding and personal well-being.

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Effectiveness of Family-Engaged Multidimensional Team Planning and Management for Recovery in Patients With Severe Stroke and Low Functional Status

Objective To evaluate the effectiveness of family-engaged multidimensional team planning and management for patients with severe stroke and low functional status and to identify factors predictive of improved outcome at 1 month after admission. Methods We retrospectively evaluated 50 patients who underwent family-engaged multidimensional rehabilitation for recovery from severe stroke due to primary unilateral cerebral lesions. The rehabilitation consisted of three phases: comprehensive multidimensional assessment, intensive rehabilitation, and evaluation. Functional Independence Measure (FIM) scores were calculated and used to predict the patients’ status at discharge. Results Although all FIM scores significantly improved after 1 month of rehabilitation, the motor FIM (mFIM) score improved the most (from 20.5±1.0 to 32.6±2.0). The total FIM (tFIM) and mFIM scores continued to improve from the first month to discharge (mean mFIM efficiency, 0.33). The high-efficiency patient group (mFIM efficiency ≥0.19) had a significantly higher discharge-to-home rate (44% vs. 13%), lower frequency of hemispatial neglect, and more severe finger numbness than the low-efficiency patient group (mFIM efficiency <0.19). The regression analyses revealed that besides lower mFIM and cognitive FIM scores at admission, unilateral spatial neglect, systemic comorbidities, and age were predictive of worse 1-month outcomes and tFIM scores (conformity, R²=0.78; predictive power, Akaike information criterion value=202). Conclusion Family-engaged multidimensional team planning and management are useful for patients with severe stroke and low functional status. Furthermore, FIM scores at admission, age, unilateral spatial neglect, and systemic comorbidities should be considered by rehabilitation teams when advising caregivers on the probability of favorable outcomes after rehabilitation.

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Building on the recovery approach: the development of a conceptual model of service design for carers in mental health

Carers' views about their role in recovery are under-researched, and studies investigating their needs are underdeveloped. In this study, participatory action research was used; I was supported by a steering group of eight stakeholders to co-produce a training programme on recovery and data collection methods to explore the meaning of recovery for carers. The programme was delivered by me, an expert-by-experience with a diagnosis of schizophrenia, and a carer of her son with a similar diagnosis, to a group of eleven participants. Mainly qualitative data was collected together with supplementary quantitative socio-demographic data from the participants. Selected findings based on the carers' discussions are presented which focus on how the relationship between carers and professionals can most effectively facilitate service user recovery. Issues of information exchange between carers and professionals and the impact of patient confidentiality are highlighted, the nature of recovery practice is considered, and the participants' need to be regarded as 'experts' is addressed. A conceptual model of service design based on a recovery-oriented 'triangle of care' is presented. The potential implementation of this model in the current UK mental health service context is considered with the need for co-production between all stakeholders to ensure its development. 

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Informal caregivers' views on the division of responsibilities between themselves and professionals: A scoping review

This scoping review focuses on the views of informal caregivers regarding the division of care responsibilities between citizens, governments and professionals and the question of to what extent professionals take these views into account during collaboration with them. In Europe, the normative discourse on informal care has changed. Retreating governments and decreasing residential care increase the need to enhance the collaboration between informal caregivers and professionals. Professionals are assumed to adequately address the needs and wishes of informal caregivers, but little is known about informal caregivers' views on the division of care responsibilities. We performed a scoping review and searched for relevant studies published between 2000 and September 1, 2016 in seven databases. Thirteen papers were included, all published in Western countries. Most included papers described research with a qualitative research design. Based on the opinion of informal caregivers, we conclude that professionals do not seem to explicitly take into account the views of informal caregivers about the division of responsibilities during their collaboration with them. Roles of the informal caregivers and professionals are not always discussed and the division of responsibilities sometimes seems unclear. Acknowledging the role and expertise of informal caregivers seems to facilitate good collaboration, as well as attitudes such as professionals being open and honest, proactive and compassionate. Inflexible structures and services hinder good collaboration. Asking informal caregivers what their opinion is about the division of responsibilities could improve clarity about the care that is given by both informal caregivers and professionals and could improve their collaboration. Educational programs in social work, health and allied health professions should put more emphasis on this specific characteristic of collaboration.

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Dualities of dementia illness narratives and their role in a narrative economy

The concept of 'narrative economies' has recently been proposed as a set of exchange relationships that, through biography and story-telling, facilitate access to resources and act as a source of value. We utilise this concept to inform our analysis of 18 qualitative interviews with five people with dementia and four informal carers. Our participants are members of a pre-existing group of dementia advocates, representing the voices of those living with the condition. There are a growing number of people in the early stages of dementia - like our participants - being called upon to account for their experience, as a means of developing a politicised 'collective illness identity'. These interviews present an opportunity to study a group of people who are actively involved in speaking as, and for, people with dementia. Four themes emerged from the data: becoming a voice of or for people with dementia; biographical reinforcement; responsibilisation; and resistance. These themes illustrate the ways in which people with dementia participate in their own identity construction and, as representatives of those living with dementia, they also illustrate the ways in which illness narratives produce material and symbolic value.

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The Impact of a Shared Decision-Making Training Program on Dementia Care Planning in Long-Term Care

Background: Shared decision-making (SDM) can be a way for staff to adopt international recommendations advocating the involvement of nursing home residents and their family members in care planning and the development of personalized care plans. Objective: The main aim was to analyze the effects of training nursing home staff in the implementation of SDM on agreement of residents' 'life-and-care plans' with the recommendations (primary outcome) and on family caregivers' quality of life and sense of competence, and staff's job satisfaction (secondary outcomes). Methods: In the intervention condition, staff attended a training program on the use of SDM with residents and family caregivers in the care planning process. In the control condition, care planning as usual took place. For the primary outcome, in-depth qualitative and quantitative analyses of the care plans were performed. Multivariate Permutation Tests were applied to assess the impact on secondary outcomes. Results: Forty-nine residents and family caregivers and 34 professionals were involved. Overall, many of the care plans developed during the intervention showed a high level of agreement with the care planning recommendations. Both Italian and Dutch care plans showed improvement in the number of clear problem statements (p < 0.001). In Italy, significant improvements (p < 0.05) were also found regarding specific care objectives, documentation of objectives met, and of residents and families' involvement. No impact was found on secondary outcomes. Conclusion: The involvement of residents and family caregivers in care planning contributed to an improvement of the residents' care plans, but it did not have an effect on family caregivers and staff outcomes. 

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Role of domiciliary and family carers in individualised nutrition support for older adults living in the community

Protein-energy malnutrition is common amongst people aged 65 years and older, has a multifactorial aetiology, and numerous negative outcomes. Domiciliary carers (non-clinical paid carers) and family carers (including family, friends and neighbours) are required to support the increasing demand for in-home assistance with activities of daily living due to the ageing population. This review provides insight into the role of both domiciliary and family carers in providing individualised nutrition support for older, community-dwelling adults with malnutrition. Four electronic databases were searched for intervention studies from database inception to December 2016. Both domiciliary and family carers are well placed to monitor the dietary intake and nutritional status of older adults; to assist with many food-related tasks such as the sourcing and preparation of meals, and assisting with feeding when necessary; and to act as a conduit between the care recipient and formal nutrition professionals such as dietitians. There is moderate evidence to support the role of domiciliary carers in implementing nutrition screening and referral pathways, and emerging evidence suggests they may have a role in malnutrition interventions when supported by health professionals. Moderate evidence also supports the engagement of family carers as part of the nutrition care team for older adults with malnutrition. Interventions such as group education, skill-development workshops and telehealth demonstrate promise and have significantly improved outcomes in older adults with dementia. Further interventional and translational research is required to demonstrate the efficacy of engaging with domiciliary and family carers of older adults in the general community.; Copyright © 2017 Elsevier B.V. All rights reserved.

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Reducing Symptom Distress in Patients With Advanced Cancer Using an e-Alert System for Caregivers: Pooled Analysis of Two Randomized Clinical Trials

Background: Symptom distress in patients toward the end of life can change rapidly. Family caregivers have the potential to help patients manage those symptoms, as well as their own stress, if they are equipped with the proper resources. Electronic health (eHealth) systems may be able to provide those resources. Very sick patients may not be able to use such systems themselves to report their symptoms but family caregivers could.; Objective: The aim of this paper was to assess the effects on cancer patient symptom distress of an eHealth system that alerts clinicians to significant changes in the patient's symptoms, as reported by a family caregiver.; Methods: A pooled analysis from two randomized clinical trials (NCT00214162 and NCT00365963) compared outcomes at 12 months for two unblinded groups: a control group (Comprehensive Health Enhancement Support System [CHESS]-Only) that gave caregivers access to CHESS, an online support system, and an experimental group (CHESS+CR [Clinician Report]), which also had CHESS but with a CR that automatically alerted clinicians if symptoms exceeded a predetermined threshold of severity. Participants were dyads (n=235) of patients with advanced lung, breast, or prostate cancer and their respective family caregivers from 5 oncology clinics in the United States of America. The proportion of improved patient threshold symptoms was compared between groups using area-under-the-curve analysis and binomial proportion tests. The proportion of threshold symptoms out of all reported symptoms was also examined.; Results: When severe caregiver-reported symptoms were shared with clinicians, the symptoms were more likely to be subsequently reported as improved than when the symptoms were not shared with clinicians (P<.001). Fewer symptom reports were completed in the group of caregivers whose reports went to clinicians than in the CHESS-Only group (P<.001), perhaps because caregivers, knowing their reports might be sent to a doctor, feared they might be bothering the clinician.; Conclusions: This study suggests that an eHealth system designed for caregivers that alerts clinicians to worrisome changes in patient health status may lead to reduced patient distress.; Trial Registration: NCT00214162; (Archived by WebCite at and NCT00365963; (Archived by WebCite at; ©David H Gustafson, Lori L DuBenske, Amy K Atwood, Ming-Yuan Chih, Roberta A Johnson, Fiona McTavish, Andrew Quanbeck, Roger L Brown, James F Cleary, Dhavan Shah. Originally published in the Journal of Medical Internet Research (, 14.11.2017.

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Exploration of the perceived impact of carer involvement in mental health nurse education: Values, attitudes and making a difference

Academic settings are seen to be an ideal, although potentially privileged, environments in which to demonstrate meaningful and authentic involvement. Despite the lack of evaluation and evidence relating to the impact of involvement being noted in the early 2000's, there continues to be a lack of evaluative research in this area (Happell et al., 2014) with the examination of the carers perspective being even more limited. This paper presents qualitative findings emerging from an Interpretive Phenomenological Analysis (IPA) carried out on transcripts from five individual semi-structured interviews with family carers who contribute to the Bachelor of Nursing (Mental Health) programme at Edinburgh Napier University. The study sets out to explore the perceptions family carers have relating to their involvement in nurse education. Findings are themed and offer insights into why family carers become involved in educating nurses, the impact they perceive this involvement has on students and themselves and the meaning they make of the feedback they receive. Drawing on these themes and narratives provides opportunities to understand the motivation and drive carers have to improve health and social care services for carers and for people who use services while offering knowledge about how carers perceive and evaluate the impact of their contributions. Conclusions made relate to the value of involvement and how connecting with students thought out their programme of study builds rapport and meaningful, authentic partnerships. However, the strategic planning and continued investment in co-production as well as a deeper understanding of the complex relationship students and carers have is needed.; Copyright © 2018 Elsevier Ltd. All rights reserved.

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Committed to carers: supporting carers of people at the end of life

Marie Curie campaigns to ensure that more people are able to be cared for and die at home. Previous research has shown that 63% of people would choose to die at home if they were terminally ill, however the reality in the UK is that just 21% of people die at home, while the majority (53%) die in hospital. This report describes the direct experiences of carers looking after someone at the end of life. It is based on interviews with 40 carers who were currently caring for a sick friend or relative or had been bereaved. The research was designed to explore how people experience caring for someone with a terminal illness in the context of their family, work and social lives. Some of the patients used hospice or hospital in-patient care, others remained at home. The separate chapters consider: the impact of caring for someone at the end of life; access to information and support; the place of care and place of death; and bereavement. It concludes with recommendations designed to ensure that more carers of someone at the end of life receive the support they need to keep caring.

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Evaluation of a problem-solving (PS) techniques-based intervention for informal carers of patients with dementia receiving in-home care

The value of care provided by informal carers in Canada is estimated at $26 billion annually (Hollander et al., 2009). However, carers’ needs are often overlooked, limiting their capacity to provide care. Problem-solving therapy (PST), a structured approach to problem solving (PS) and a core principle of the Reitman Centre CARERS Program, has been shown to alleviate emotional distress and improve carers’ competence (Chiu et al., 2013). This study evaluated the effectiveness of problem-solving techniques-based intervention based on adapted PST methods, in enhancing carers’ physical and emotional capacity to care for relatives with dementia living in the community.

56 carers were equally allocated to a problem-solving techniques-based intervention group or a control arm. Carers in the intervention group received three 1 hr visits by a care coordinator (CC) who had been given advanced training in PS techniques-based intervention. Coping, mastery, competence, burden, and perceived stress of the carers were evaluated at baseline and post-intervention using standardized assessment tools. An intention-to-treat analysis utilizing repeated measures ANOVA was performed on the data.

Post-intervention measures completion rate was 82% and 92% for the intervention and control groups, respectively. Carers in the intervention group showed significantly improved task-oriented coping, mastery, and competence and significantly reduced emotion-oriented coping, burden and stress (p < 0.01–0.001). Control carers showed no change.

PS techniques, when learned and delivered by CCs as a tool to coach carers in their day-to-day caregiving, improves carers’ caregiving competence, coping, burden, and perceived stress. This may reduce dependence on primary, psychiatric, and institutional care. Results provide evidence that establishing effective partnerships between inter-professional clinicians in academic clinical health science centers, and community agencies can extend the reach of the expertise of specialized health care institutions.

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Towards a more inclusive vision of dementia care practice and research

Drawing on recent literature this article explores the development of research with family carers and people with dementia and identifies a number of themes that have emerged over time. It raises fundamental questions about the nature and purpose of research and the balance of power between researchers, family carers and people with dementia. Existing notions of expertise and knowledge are called into question and the article concludes with a call for a more empowering and inclusive model of research and practice based upon a relationship-centred approach to care.

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Service user perspectives on palliative care education for health and social care professionals supporting people with learning disabilities

Background and objectives: Evidence from European and American studies indicates limited referrals of people with learning (intellectual) disabilities to palliative care services. Although professionals’ perceptions of their training needs in this area have been studied, the perceptions of people with learning disabilities and family carers are not known. This study aimed to elicit the views of people with learning disabilities, and their family carers concerning palliative care, to inform healthcare professional education and training.

Methods: A qualitative, exploratory design was used. A total of 17 people with learning disabilities were recruited to two focus groups which took place within an advocacy network. Additionally, three family carers of someone with a learning disability, requiring palliative care, and two family carers who had been bereaved recently were also interviewed.

Results: Combined data identified the perceived learning needs for healthcare professionals. Three subthemes emerged: ‘information and preparation’, ‘provision of care’ and ‘family-centred care’.

Conclusions: This study shows that people with learning disabilities can have conversations about death and dying, and their preferred end-of-life care, but require information that they can understand. They also need to have people around familiar to them and with them. Healthcare professionals require skills and knowledge to effectively provide palliative care for people with learning disabilities and should also work in partnership with their family carers who have expertise from their long-term caring role. These findings have implications for educators and clinicians.

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Case management in primary palliative care is associated more strongly with organisational than with patient characteristics: results from a cross-sectional prospective study

Background: Case managers have been introduced in Dutch primary palliative care; these are nurses with expertise in palliative care who offer support to patients and informal carers in addition to the care provided by the general practitioner and home care nurses. This study aims to describe support and investigate what characteristics of patients and the organizational setting are related to the number of contacts and to the number of times topics are discussed between the case manager and patients and/or informal carers.

Methods: Prospective study following cancer patients (n = 662) receiving support from a palliative care case manager in Dutch primary care, using registration forms filled out by the case manager after contact with the patient and/or informal carer. In backward linear regression, the association was studied between patient or organizational characteristics and the number of contacts and the number of times conversation topics were discussed.

Results: Organizational characteristics add more to explained variability in data than patient characteristics. Case managers provide support in a flexible manner with regard to the number, mode, persons present, and duration of contacts. Support covered all domains of palliative care, with most attention given to physical complaints, life expectancy and psychological aspects.

Conclusions: Support offered by the case managers is prompted by characteristics of the organization for which they work. This is contradictory to the idea of patient centered care highly valued in palliative care.

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Essence of care 2010: benchmarks for communication

The Essence of Care benchmarks are a tool to help healthcare practitioners take a patient-focused and structured approach to sharing and comparing practice. There are 12 benchmarks in total. This document outlines the benchmarks for communication, in order to support people and their carers to experience effective communication. It starts by listing the general indicators that apply to every factor: people’s experience; diversity and individual needs; effectiveness; consent and confidentiality; people, carer and community members’ participation; leadership; education and training; documentation; service delivery; safety; and safeguarding. It then lists the factors specific to communication, together with their supporting indicators. The factors are: interpersonal skills; opportunity for communication; assessment of communication needs; information sharing; resources to aid communication and understanding; identification and assessment of principle carer; empowerment to perform role; co-ordination of care; Empowerment to communicate needs; Valuing people’s and carers’ expertise and contribution; People’s and/or carers’ education needs.

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Negotiating lay and professional roles in the care of children with complex health care needs

BACKGROUND: Children with complex health care needs are now being cared for at home as a result of medical advances and government policies emphasizing community-based care. The parents of these children are involved in providing care of a highly technical and intensive nature that in the past would have been the domain of professionals (particularly nurses).

AIMS OF THE PAPER: To assess how the transfer of responsibility from professionals to parents was negotiated, the tensions and contradictions that can ensue, and the implications for professional nursing roles and relationships with parents.

DESIGN: Using a Grounded Theory methodology, in-depth interviews were conducted with 23 mothers, 10 fathers and 44 professionals to gain insight into the experience of caring for children and supporting families in the community.

FINDINGS: From the parents' perspective, their initial assumption of responsibility for the care of their child was not subject to negotiation with professionals. Prior to discharge, parents' feelings of obligations, their strong desire for their child to come home, and the absence of alternatives to parental care in the community, were the key motivating factors in their acceptance of responsibility for care-giving from professionals. The professionals participating in the study had concerns over whether this group of parents was given a choice in accepting responsibility and the degree of choice they could exercise in the face of professional power. However, it was following the initial discharge, as parents gained experience in caring for their child and in interacting with professionals, that role negotiation appeared to occur.

CONCLUSION: This study supports other research that has found that professionals' expectations of parental involvement in the care of sick children role can act as a barrier to negotiation of roles. In this study, parental choice was also constrained initially by parents' feelings of obligation and by the lack of community services. Nurses are ideally placed to play the central role not only in ensuring that role negotiation and discussion actually occurs in practice, but also by asserting the need for appropriate community support services for families. Being on home territory, and in possession of expertise in care-giving and in managing encounters with professionals, provided parents with a sense of control with which to enter negotiations with professionals. It is important that changes in the balance of power does not lead to the development of parent-professional relationships that are characterized by conflict rather than partnership.

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Impacts on practitioners of using research-based carer assessment tools: experiences from the UK, Canada and Sweden, with insights from Australia

Researchers and practitioners in several Western countries have recently developed tools for assessing the situation of the carers of adults who are ill, elderly or have disabilities. The present article describes the impact of three such assessment tools, from Canada, the UK and Sweden, on the professional practice of assessors. All tools were tested in agency-based studies. Focus groups, workshops and interviews with assessors were employed to understand the impact on professionals and their practice. An Australian researcher and case manager comments on these experiences from her unique perspective. The results reveal that the use of carer assessments can lead to changes in the appropriateness of intervention by informing practitioners of issues which are given little attention, but which impact on the adequacy of interventions to the service user. Across the projects, most workers found that the tools facilitated a more comprehensive, in-depth and carer-focused assessment. Experience across all the projects suggests that, used sensitively, such tools and approaches can play a key role in transforming the relationship between carers, and the health and social care system. Giving carers a legitimate voice, acknowledging their perspective and expertise, and making them central to assessment processes accords them status both as active partners, and as individuals with their own needs and aspirations, rather than seeing them primarily as resources. As a result of their experiences, many workers and administrators concluded that home-care programmes must change their mandate to include carers among their clients, raising the issue of available monetary and human resources to meet the needs of this group. In addition, as our Australian colleague points out, time, efficiency, relevance, benefit and minimal intrusiveness are important factors for practitioners which influence their use of assessment tools.

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Development of a position document for home care - wound care

Introduction and description of care: The management of non-healing wounds in Europe has gone through a dramatic shift in the location of service delivery from hospital towards home care settings. As a consequence more wounds with complex pathological pictures due to untreated patient co-morbidities are treated at home. There are no guidelines available covering the subject of home-care wound-management from a clinical perspective as well as no recommendations of minimal requirement of providing best care and supporting the empowerment of informal carers and patients with non-healing wounds in the home-care setting. Methods and aim: Based on literature reviews in combination with expert opinions from across sectors and areas of expertise a document was elaborated to give an overview of the main current approaches to the organisation of wound care within home-care settings, to identify possible barriers, challenges and opportunities for providing modern, cost-efficient, interdisciplinary wound care. The document has been developed in an intersectoral collaboration across European countries and organisations between the Tissue Viability Society (UK), Initiative Chronische Wunden (Germany), HomeCare Europe and EWMA. Thus, the focus is interdisciplinary and not tied to a specific health care system. Conclusion and discussion: Describing recommendations and raising a debate of how to manage non-healing wounds at home is of crucial importance for healthcare professionals, - providers, companies and policy makers as there is a tendency in home care of going towards employment of non-registered nurses. The document underlines the importance, scope, and level of the appropriate skills and gives recommendations for the interdisciplinary set-up required for wound care in the home-care setting.

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Carers and co-production: enabling expertise through experience?

Purpose– The purpose of this paper is to provide a brief overview of the literature to date which has focused on co-production within mental healthcare in the UK, including service user and carer involvement and collaboration.

Design/methodology/approach – The paper presents key outcomes from studies which have explicitly attempted to introduce co-produced care in addition to specific tools designed to encourage co-production within mental health services. The paper debates the cultural and ideological shift required for staff, service users and family members to undertake co-produced care and outlines challenges ahead with respect to service redesign and new roles in practice.

Findings – Informal carers (family and friends) are recognised as a fundamental resource for mental health service provision, as well as a rich source of expertise through experience, yet their views are rarely solicited by mental health professionals or taken into account during decision making. This issue is considered alongside new policy recommendations which advocate the development of co-produced services and care.

Research limitations/implications – Despite the launch of a number of initiatives designed to build on peer experience and support, there has been a lack of attention on the differing dynamic which remains evident between healthcare professionals and people using mental health services. Co-production sheds a light on the blurring of roles, trust and shared endeavour (Slay and Stephens, 2013) but, despite an increase in peer recovery workers across England, there has been little research or service development designed to focus explicitly on this particular dynamic.

Practical implications – Despite these challenges, coproduction in mental healthcare represents a real opportunity for the skills and experience of family members to be taken into account and could provide a mechanism to achieve the “triangle of care” with input, recognition and respect given to all (service users, carers, professionals) whose lives are touched by mental distress. However, lack of attention in relation to carer perspectives, expertise and potential involvement could undermine the potential for coproduction to act as a vehicle to encourage person-centred care which accounts for social in addition to clinical factors.

Social implications – The families of people with severe and enduring mental illness assume a major responsibility for the provision of care and support to their relatives over extended time periods (Rose et al., 2004). Involving carers in discussions about care planning could help to provide a wider picture about the impact of mental health difficulties, beyond symptom reduction. The “co-production of care” reflects a desire to work meaningfully and fully with service users and carers. However, to date, little work has been undertaken in order to coproduce services through the “triangle of care” with carers bringing their own skills, resources and expertise.

Originality/value – This paper debates the current involvement of carers across mental healthcare and debates whether co-production could be a vehicle to utilise carer expertise, enhance quality and satisfaction with mental healthcare. The critique of current work highlights the danger of increasing expectations on service providers to undertake work aligned to key initiatives (shared decision-making, person-centred care, co-production), that have common underpinning principles but, in the absence of practical guidance, could be addressed in isolation rather than as an integrated approach within a “triangle of care”.

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When Harry met Barry, and other stories: a partner's influence on relationships in back pain care

This study forms part of a longitudinal investigation of pain, disability and health care use in primary care low back pain consulters. Sixteen purposively sampled patients and their health care professionals were interviewed about experiences with back pain and their therapeutic relationships. This case study draws on the accounts of one patient, his wife, and three health care professionals and explores the role of the informal carer in back pain care. The interview with the patient and his wife highlights the dynamics of a co-constructed narrative of back pain. The joint narrative is fundamentally supportive of the patient's condition, yet his wife's preference for a proactive approach to health care is undermined by the patient's unquestioning respect for health professionals. In addition, the patient's limited expression—of his suffering and his feelings regarding care received—results in less beneficial care where opportunities remain unfulfilled and problems unresolved. His wife's role as narrator of his pain provokes different reactions from health professionals and these are discussed. Analysis reveals a positive and mediating role for informal carers within the provision of health care. However, the construction of the patient's limited expression in opposition to his wife as an ‘expert carer’ raises issues around these roles in the therapeutic encounter that require further exploration. To use supportive relationships effectively there is a need to better understand the interplay between the patient and carer roles, how these roles are negotiated in the health care consultation, and the possible contradictions that this poses.

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Experiences of using a memory aid to structure and support daily activities in a small-scale group accommodation for people with dementia

Background: Use of technology to structure and support the daily activities of the residents in a small-scale group accommodation (SSGA) for dementia is a new innovation in the Netherlands. This paper presents the process of development of this new way of structuring activities and the findings of a pilot study looking at the experiences of using this device in people with dementia.

Method: A qualitative method was chosen, data were collected using individual interviews with the residents (n = 6), focus groups interviews with informal carers (n = 5) and members of staff (n = 6). Data were analysed using Ritchie & Spencer’s framework (1994).

Findings: Three main themes emerged: issues regarding the implementation, needs for further development and the learning experiences acquired during the development. The majority of the residents were happy with the use and function of the memory aid. However, the occurrence of installation errors, limited ease of use and a lack of knowledge regarding the function and use of the memory aid were issues that prevented a successful implementation. Findings highlighted shared views about ways of improving through adaptation of the software program and additional technological applications; internet connectivity, improving its accessibility by using a remote control and adding videos and photos.

Conclusion: Lessons are learned about the use and transferability of this innovation in people with dementia and other vulnerable target groups including those with learning disabilities as well as its limitation and the needs for further development.

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Building on carers' stories to enrich research: lessons from a recent study

This paper provides an account of how family carers were involved in a longitudinal research study that aimed to investigate the needs of ‘new’ family carers of stroke survivors. An account of how the researcher involved carers is provided, followed by one carer's description of the benefits and negative consequences of being involved in the study. Suggestions are made about how to develop good practice with regard to involving people in research. The conclusions highlight that, although rewarding, being involved in research is not without its challenges. However, research participants have much to contribute to the entire research process and its products. It is important therefore to learn lessons about how best to maximise the expertise that carers and others have to offer.

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Piece of my mind

Commissioning mental health is a complex area and expertise is varied. This article explains 'Values based' commissioning, which aims to put users' views at the heart of reshaping services. Values based commissioning aims to take a fresh look at what kind of services should be commissioned and why, with service users and carers working jointly with commissioners to lead commissioning decisions.

Transitions at the end of life for older adults: patient, carer and professional perspectives : a mixed-methods study

Background: The end of life may be a time of high service utilisation for older adults. Transitions between care settings occur frequently, but may produce little improvement in symptom control or quality of life for patients. Ensuring that patients experience co-ordinated care, and moves occur because of individual needs rather than system imperatives, is crucial to patients’ well-being and to containing health-care costs.

Objective: The aim of this study was to understand the experiences, influences and consequences of transitions between settings for older adults at the end of life. Three conditions were the focus of study, chosen to represent differing disease trajectories.

Setting: England.

Participants: Thirty patients aged over 75 years, in their last year of life, diagnosed with heart failure, lung cancer and stroke; 118 caregivers of decedents aged 66–98 years, who had died with heart failure, lung cancer, stroke, chronic obstructive pulmonary disease or selected other cancers; and 43 providers and commissioners of services in primary care, hospital, hospice, social care and ambulance services.

Design and methods: This was a mixed-methods study, composed of four parts: (1) in-depth interviews with older adults; (2) qualitative interviews and structured questionnaire with bereaved carers of older adult decedents; (3) telephone interviews with care commissioners and providers using case scenarios derived from the interviews with carers; and (4) analysis of linked Hospital Episode Statistics (HES) and mortality data relating to hospital admissions for heart failure and lung cancer in England 2001–10.

Results: Transitions between care settings in the last year of life were a common component of end-of-life care across all the data sets that made up this study, and many moves were made shortly before death. Patients’ and carers’ experiences of transitions were of a disjointed system in which organisational processes were prioritised over individual needs. In many cases, the family carer was the co-ordinator and provider of care at home, excluded from participation in institutional care but lacking the information and support to extend their role with confidence. The general practitioner (GP) was a valued, central figure in end-of-life care across settings, though other disciplines were critical of GPs’ expertise and adherence to guidelines. Out-of-hours services and care homes were identified by many as contributors to unnecessary transitions. Good relationships and communication between professionals in different settings and sectors was recognised by families as one of the most important influences on transitions but this was rarely acknowledged by staff.

Conclusions: Development of a shared understanding of professional and carer roles in end-of-life transitions may be one of the most effective ways of improving patients’ experiences. Patients and carers manage many aspects of end-of-life care for themselves. Identifying ways to extend their skills and strengthen their voices, particularly in hospital settings, would be welcomed and may reduce unnecessary end-of-life transitions. Why the experiences of carers appear to have changed little, despite the implementation of a range of relevant policies, is an important question that has not been answered. Recommendations for future research include the relationship between policy interventions and the experiences of end-of-life carers; identification of ways to harmonise understanding of the carers’ role and strengthen their voice, particularly in hospital settings; identification of ways to reduce the influence of interprofessional tensions in end-of-life care; and development of interventions to enhance patients’ experiences across transitions.

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Caring for carers of people with stroke: developing a complex intervention following the Medical Research Council framework

Objective: To develop an intervention, using the first three phases of the Medical Research Council (MRC) framework for complex interventions, to facilitate coping skills in new carers of stroke patients.

Methods: In the preclinical (theoretical) phase, a theoretically based framework for a small group course for carers of people with stroke was developed. The intervention was grounded in a cognitive behavioural model and included carers' needs identified from a literature review. Phase I (modelling phase) comprised a qualitative study involving one-to-one semi-structured interviews with a purposive sample of informal carers of people with stroke. Following this, the intervention was modified. In phase II (exploratory phase), the modified intervention was delivered by a clinical psychologist and stroke nurse practitioner to five carers. Following postcourse interviews the course was further refined and delivered to seven new carers who subsequently completed a satisfaction questionnaire.

Results: Carers' needs identified from the literature included information provision; managing emotions; social support; health maintenance; and practical problem solving. Consultation with existing carers confirmed these as important issues with a strong emphasis on finding niches of control in life, becoming an expert carer, and dealing with emotional upheaval. Participants reported feeling more optimistic and empowered subsequent to the course.

Conclusions: The MRC framework provided a useful methodology for the development of a complex intervention. The course aimed to assist carers to regain control over aspects of their lives and manage their emotions. It was feasible to run and acceptable to carers; however a randomized controlled trial (RCT) is required to evaluate its effectiveness.

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Involvement of a Case Manager in Palliative Care Reduces Hospitalisations at the End of Life in Cancer Patients; A Mortality Follow-Back Study in Primary Care

Background: Case managers have been introduced in primary palliative care in the Netherlands; these are nurses with expertise in palliative care who offer support to patients and informal carers in addition to the care provided by the general practitioner (GP) and home-care nurse.

Objectives: To compare cancer patients with and without additional support from a case manager on: 1) the patients’ general characteristics, 2) characteristics of care and support given by the GP, 3) palliative care outcomes.

Methods: This article is based on questionnaire data provided by GPs participating in two different studies: the Sentimelc study (280 cancer patients) and the Capalca study (167 cancer patients). The Sentimelc study is a mortality follow-back study amongst a representative sample of GPs that monitors the care provided via GPs to a general population of end-of-life patients. Data from 2011 and 2012 were analysed. The Capalca study is a prospective study investigating the implementation and outcome of the support provided by case managers in primary palliative care. Data were gathered between March 2011 and December 2013.

Results: The GP is more likely to know the preferred place of death (OR 7.06; CI 3.47-14.36), the place of death is more likely to be at the home (OR 2.16; CI 1.33-3.51) and less likely to be the hospital (OR 0.26; CI 0.13-0.52), and there are fewer hospitalisations in the last 30 days of life (none: OR 1.99; CI 1.12-3.56 and one: OR 0.54; CI 0.30-0.96), when cancer patients receive additional support from a case manager compared with patients receiving the standard GP care.

Conclusions: Involvement of a case manager has added value in addition to palliative care provided by the GP, even though the role of the case manager is ‘only’ advisory and he or she does not provide hands-on care or prescribe medication.

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Gender differences in the construction and experience of cancer care: The consequences of the gendered positioning of carers

The experience and construction of caring in 50 informal cancer carers, 35 women and 15 men, was examined using a critical realist approach and a mixed method design. Women reported higher rates of depression, anxiety, unmet needs and burden of care than men. No gender differences were found in time spent care-giving, suggesting that gendered roles are implicated in distress and coping. Semi-structured interviews with 13 carers were used to identify gender differences in caring, analysed using positioning theory. Women described being positioned as all encompassing expert carers, expected to be competent at decision-making, a range of physical caring tasks, and provision of emotional support for the person with cancer. The consequences of this positioning were over-responsibility and self-sacrifice, physical costs and overwhelming emotions, which were self-silenced. In contrast, men carers positioned caring as a competency task which they had mastered, and which provided them with satisfaction, with the emotions of the person with cancer, or their own emotions, being negative aspects of caring. It is concluded that cancer caring is tied to gendered constructions and expectations, with considerable implications for psychological well-being and coping, and for carer support services, which need to take gender issues on board.

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Community relations and child-led microfinance: a case study of caregiving children in Kenya

Rampant levels of AIDS and poverty have made many children in sub-Saharan Africa the primary caregivers of their ageing or ailing guardians. This paper reports on a social action fund initiative that brought caregiving children together to set-up and run income generating activities as a group with the aim of strengthening their coping capabilities. To further our understanding of child-led microfinance activities, this paper explores how intra-community relations can both facilitate and undermine child-led activities, and how these activities in turn can further strengthen some intra-community relations. Twenty-one children (aged 12–17) and six guardians participated in this study. Data included draw-and-write compositions (n=21), essays (n=16), workshop notes and proposals (n=8) and in-depth interviews (n=16). A thematic analysis revealed that the children actively drew on the expertise and involvement of some guardians in the project as well as on each other, developing supportive peer relations that helped strengthen their coping capabilities. However, the children's disenfranchised position in the community meant that some adults took advantage of the child-led activities for their own personal gain. Some children also showed a lack of commitment to collective work, undermining the morale of their more active peers. Nevertheless, both guardians and the children themselves began to look at caregiving children differently as their engagement in the project began to earn them respect from the community – changing guardian/child relations. The paper concludes that microfinance interventions targeting children and young people must consider children's relationships with each other and with adults as key determinants of Project success.

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Improving the interface between informal carers and formal health and social services: A qualitative study

Reports about the impact of caring vary widely, but a consistent finding is that the role is influenced (for better or worse) by how formal services respond to, and work with informal carers and of course the cared for person. We aimed to explore the connection between informal and formal cares and identify how a positive connection or interface might be developed and maintained. We undertook a qualitative descriptive study with focus groups and individual interviews with informal carers, formal care service providers and representatives from carer advocacy groups. Content analysis was used to identify key factors impacting on the interface between informal and formal carers and propose specific recommendations for service development. Community setting including urban and rural areas of New Zealand. Seventy participants (the majority informal carers) took part in 13 focus groups and 22 individual interviews. Four key themes were derived: Quality of care for the care recipient; Knowledge exchange (valuing carer perspectives); One size does not fit all (creating flexible services); and A constant struggle (reducing the burden services add). An optimum interface to address these key areas was proposed. Conclusion: In addition to ensuring quality care for the care recipient, specific structures and processes to support a more positive interface appear warranted if informal carers and services are to work well together. An approach recognising the caring context and carer expertise may decrease the additional burden services contribute, and reduce conflicting information and resultant confusion and/or frustration many carers experience.

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Working together in dementia research: reflections on the EVIDEM programme

Purpose– The purpose of this case study is to report and reflect on a recently completed five-year programme of research on dementia care and practice in England. This EVIDEM programme of research was specifically designed to influence services for people with dementia and their carers; several additional lessons emerged along the way that might shape broader research on ageing that includes older people and those who work with them.

Design/methodology/approach – This case study of the EVIDEM programme presents and discusses four lessons learned by the core research team – covering the implications of newly basing research inside the NHS, multi-disciplinary working across academic disciplines, communicating with diverse practitioners, and the impact of patient and public involvement on the research process. The paper reflects on communication between the NHS and academic communities, and the creation of new research capacity in dementia.

Findings – Collaborative working between academic disciplines is possible, given willing researchers and commitment to participating in frequent opportunities for dialogue and learning. In research in dementia these foundations are probably essential, given the growing scale of the problem and the small size of the research community, if we are to have a beneficial impact on people's lives. Lay expertise is a necessary ingredient of research programmes, not just for its co-design power, but for its ability to redesign projects when major problems arise. 

Research limitations/implications – This case study reports the subjective views of the research collaborators. While this raises the potential for bias, it offers an “insider” perspective of the research process and engagement in research leadership.

Originality/value – There are few reflections on research processes and management and this case study may be useful to academic researchers, to those working in the NHS with responsibility for research in different forms, and to older people's organisations who wish to hear of the value of older people's engagement in research advisory activity.

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Dying well with dementia: qualitative examination of end-of-life care

Background: People with dementia often die badly, receiving end-of-life care of poorer quality than that given to those who are cognitively intact.

Aims: To define good end-of-life care for people with dementia and identify how it can be delivered across care settings in the UK.

Method: In-depth interviews were conducted with 27 bereaved family carers and 23 care professionals recruited from the community, care homes, general hospitals and continuing care units. Data were analysed using the constant comparison method.

Results: The data highlighted the challenge and imperative of ‘dementia-proofing’ end-of-life care for people with dementia. This requires using dementia expertise to meet physical care needs, going beyond task-focused care and prioritising planning and communication with families.

Conclusions: The quality of end-of-life care exists on a continuum across care settings. Together, the data reveal key elements of good end-of-life care and that staff education, supervision and specialist input can enable its provision.

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"But I don't want eldercare!" Helping your parents stay as strong as they can as long as they can

Written from an American perspective, this book tackles head on the powerful myths and discriminatory attitudes that underlie one of the unspoken moral disasters of contemporary life: that so many older people die, before their time, cut off from their family and their homes, unhappy and alone.

Drawing on the author's professional expertise as an independent living consultant and a decade of caring for his mother, the book offers down to earth, practical advice aimed at keeping elderly parents in their own homes for as long as possible. Having identified eight key elder care support 'rules', it explains how best to gauge the type and level of support required by an elderly parent covering both physical and psychological needs. Placing a strong emphasis on the quality of life, it describes how to avoid common assumptions about old age, how to determine what is 'normal' and 'abnormal' for the parent concerned and when and how to intervene. It describes the importance of forward planning in connection with financial and health matters and briefly describes arrangements such as the power of attorney, living wills and advance healthcare directives. 

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Professionals' views on the roles and needs of family carers of adults with cerebral palsy and complex communication needs in hospital

Background The aim of this study was to explore the views of hospital and disability service staff on the roles and needs of family carers of adults with cerebral palsy (CP) and complex communication needs (CCN) in hospital.

Method We conducted a focus group with six hospital and disability service staff, analysed the content themes of the group discussion, and verified the analysis with participants.

Results Participants highlighted the family carers’ expertise and roles in emotional and communication support, advocacy, and providing information. They acknowledged that there is a gap between the ideal of hospital staff being able to provide all necessary care to the patient with CP, and the reality of hospital staff relying upon family carers for their expertise and provision of patient care.

Conclusions Hospital and disability staff do not expect family carers to replace the nurse in caring for the patient with CP and CCN in hospital. Nevertheless, family carers provide valuable support in hospital. This includes support with communication, advocacy, protection, information exchange, direct care, and emotional support. Family carers with a high level of expertise in providing care may need support in adapting to the culture of care on the ward and in transferring their roles and expertise in direct care to hospital staff. In addition, they need emotional and practical support through the stressful experience of having a family member hospitalised.

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A sociological focus on 'expert patients'

The increase of chronic illness as a leading cause of death has given rise to self-care and expert patient initiatives. Caring for chronically ill people places a tremendous economic burden on the health care system, informal carers, the labour market and benefit system (Department of Health 2001, 2004, 2005). Thus, in many countries health policy encourages patients to become ‘experts’ in the self-management of their conditions in the belief that it will help save money and improve health and well-being (Wanless 2002). For example, the notion of ‘expert patients’ has emerged in UK policy and is pivotal to government plans to modernise the National Health Service (NHS) by linking patient expertise to ideas of empowerment, a better quality of life, self-esteem and a user-driven NHS (Department of Health 2001; Fox et al 2005). Self-management and expert patient initiatives aim to encourage chronically ill patients to become more actively involved in decisions concerning their care and well-being (Lorig and Holman 2003; Lorig et al 1985, 1999, 2001).

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End of life care: fifth report of session 2014-15

The care that people receive at the end of their lives has a profound impact not only upon them but also upon their families and carers. At the most difficult of times, their experience will be made worse if they encounter poor communication and planning or inadequate professional expertise. The Health Committee has looked at the state of end of life care since the independent Review of the Liverpool Care Pathway, chaired by Baroness Neuberger, and found great variation in quality and practice across both acute and community settings.

Looks at the state of end of life care, highlighting great variation in quality and practice across both acute and community settings. The report argues that round-the-clock access to specialist palliative care in acute and community settings would greatly improve the way that people with life-limiting conditions and their families and carers are treated, especially if there were opportunities to share their expertise with other clinicians. The report sets out a number of action points for improvement, and in particular recommends that social care should be free at the end of life. The report suggests that all staff who provide palliative and end of life care to people with life limiting conditions should receive training in advance care planning, including the different models and forms that are available and their legal status. It also calls on the government to provide free social care at the end of life.

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The electronic, personalizable Rosetta system for dementia care: exploring the user-friendliness, usefulness and impact

Purpose: This research aimed to integrate three previously developed assistive technology (AT) systems into one modular, multifunctional system, which can support people with dementia and carers throughout the course of dementia. In an explorative evaluation study, the integrated system, called Rosetta, was tested on usefulness, user-friendliness and impact, in people with dementia, their informal carers and professional carers involved. The Rosetta system was installed in participants‘ homes in three countries: The Netherlands, Germany and Belgium.

Methods: Controlled trial with pre- and post-test measures across three countries (randomized controlled trial in Germany; matched groups in the Netherlands and Belgium). Participants completed questionnaires for impact measurement and participated in semi-structured interviews regarding usefulness and user-friendliness of Rosetta.

Results: All participants agreed that Rosetta is a very useful development. They did not rate the user-friendliness of the system highly. No significant effects were found on impact measurements.

Conclusion: All participants found Rosetta a very useful development for future care, and would consider using it. Since Rosetta was still in development during evaluation, a discrepancy between expectations and actual functioning of Rosetta existed, which may explain the lack of findings on the impact of the system and the low appreciation of user-friendliness.

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Expertise and experience: People with experiences of using services and carers' views of the Mental Capacity Act 2005

The views of people with experiences of using services and the views of their carers about the 2005 Mental Capacity Act (England and Wales) are reported in this article. Interviews with ten people about the detail of the Act prior to its implementation revealed that they welcomed the principles of the Act, and were able to relate these to aspects of their experiences. The Act's framework for planning around care and treatment and for making advance decisions was seen as offering greater choice and empowerment. Comments were made about the need for the Act to be publicized by professionals, for practitioners to provide specific information and for people with experiences of using services and carers to be included in training and monitoring. The data also revealed some concerns about implementation processes, about missed opportunities for legislative reform and the difficulty of balancing risks and safeguards. Such issues are likely to be highly relevant to social work practice; social workers are alerted to the expertise existing among many people with experiences of using services and carers and to the variations in opinion and knowledge likely to be found among people using services and carers.

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Learning disability nursing: user and carer perceptions

It is frequently asserted that the views of patients or service users should inform the structure and delivery of health and social care services. In the UK, patient participation, the expertise of service users and user involvement in the design and outcomes of research have been repeatedly emphasized as producing services which are more responsive, better coordinated and less stigmatizing. The NHS has highlighted the importance of involving service users in education and training. This article reports on user and carer views about learning disability nursing. Data were collected as part of a larger project considering the changing roles and education of learning disability nurses in England.The article concludes with a series of challenges for future educational and service development.

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Is socially integrated community day care for people with dementia associated with higher user satisfaction and a higher job satisfaction of staff compared to nursing home-based day care?

Objectives: To investigate whether community-based (CO) day care with carer support according to the proven effective Meeting Centres Support Programme model is associated with higher satisfaction of people with dementia (PwD) and their informal caregivers (CG) and with a higher job satisfaction among care staff compared to traditional nursing home-based (NH) day care.

Method: Data were collected in 11 NH day care centres and 11 CO day care centres. User satisfaction of PwD and CG was evaluated in the 11 NH day care centres (nPwD = 41, nCG = 39) and 11 CO day care centres (nPwD = 28, nCG = 36) with a survey after six months of participation. Job satisfaction was measured only in the six NH day care centres that recently transformed to CO day care, with two standard questionnaires before (nSTAFF = 35), and six months after the transition (nSTAFF = 35).

Results: PwD were more positive about the communication and listening skills of staff and the atmosphere and activities at the CO day care centre. Also, CG valued the communication with, and expertise of, staff in CO day care higher, and were more satisfied with the received emotional, social and practical support. After the transition, satisfaction of staff with the work pace increased, but satisfaction with learning opportunities decreased.

Conclusion: PwD and CG were more satisfied about the communication with the staff and the received support in CO day care than in NH day care. Overall job satisfaction was not higher, except satisfaction about work pace.

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Negotiating the role of expert carers on an adult hospital ward

Contemporary systems of welfare are increasingly underpinned by the assumption that families should care for their dependent adult relatives. Yet, the burgeoning empirical literature in this area has given little attention to the ways in which family caregivers fit into the service system. Drawing on interactionist theories of the division of labour, this paper employs ethnographic data, taken from a recent study, to explore the ways in which formal and informal carers negotiate ‘care’ on an adult medical ward. It is argued that established family carers (referred to as expert carers) constitute a special case in understanding the negotiation of care in the hospital context because of the challenge they pose to fundamental features of the social organisation of the work: nurses’ control over caring processes, their claim to expertise and their license to define standards of care.

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Coping with the caregiving role: differences between primary and secondary caregivers of dependent elderly people

Objectives: The topic of how primary informal caregivers cope with their caregiving demands has generated significant research. However, little is known about secondary informal caregivers, who often share caregiving responsibilities. This cross-sectional study aims to analyse and compare the use and effectiveness of coping strategies of primary and secondary informal caregivers of dependent elderly people, living at home.

Method: A sample of 180 informal caregivers of dependent elderly people – 90 primary and 90 secondary caregivers – was obtained. The study was conducted in the district of Aveiro (Portugal). The Portuguese version of Caregivers’ Assessment Management Index – CAMI (Nolan, Keady, & Grant, 1995) was administrated to both sub-samples.

Results: Findings suggest that emotion-cognitive strategies are less efficient for secondary caregivers (e.g. drawing on personal or religious beliefs). Common problem-solving strategies adopted by both types of caregivers involve relying on own their experience and expertise and addressing and finding a solution to the problem. Neither group were highly efficient at managing care-related stress, but both identified benefits from taking time off or maintaining interests outside of caregiving.

Conclusion: These findings can guide professionals in targeting and monitoring interventions aiming to develop caregivers’ effective coping strategies. Besides, engaging secondary caregivers in current available interventions and services, usually targeted to the primary caregiver, is of paramount need, as they can reduce the burden of primary caregivers and delay institutionalisation.

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Challenging professional roles: lay carers' involvement in health care in the community

The bulk of care in the community is carried out by lay carers. Recent policy initiatives to support them in the United Kingdom are outlined. There remains evidence of significant gaps in support from professional health and social-care workers including community nurses. This paper reports three studies of lay carers: those caring for older people, carers of technology-dependent children, and home-care workers involved in the “direct payments” scheme. Findings are reported in the areas of decisions about appropriate caring roles, the lay–professional boundary, training and respite opportunities and the expertise of lay carers. Recommendations for policy and practices are made.

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