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Professional education

The following resources examine the involvement of carers in shaping social work and health care professions education and training, and the importance of carers issues being reflected in course content.

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.

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Prerequisites for providing effective support to family caregivers within the primary care setting - results of a study series in Germany

BACKGROUND: General Practitioners are considered to be well placed to monitor home-care settings and to respond specifically to family caregivers. To do this, they must be sensitive to the needs and expectations of caregivers. In order to determine the current status of GP care in terms of the support given to family caregivers, a series of studies were conducted to gather the perspectives of both caregivers and GPs. The results are used to derive starting points as to which measures would be sensible and useful to strengthen support offered to family caregivers in the primary care setting. METHODS: Between 2020 and 2021, three sub-studies were conducted: a) an online survey of 612 family caregivers; b) qualitative interviews with 37 family caregivers; c) an online survey of 3556 GPs. RESULTS: Family caregivers see GPs as a highly skilled and trustworthy central point of contact; there are many different reasons for consulting them on the subject of care. In the perception of caregivers, particular weaknesses in GP support are the absence of signposting to advisory and assistance services and, in many cases, the failure to involve family caregivers in good time. At the same time, GPs do not always have sufficient attention to the physical and psychological needs of family caregivers. The doctors interviewed consider the GP practice to be well suited to being a primary point of contact for caregivers, but recognise that various challenges exist. These relate, among other things, to the timely organisation of appropriate respite services, targeted referral to support services or the early identification of informal caregivers. CONCLUSIONS: GP practices can play a central role in supporting family caregivers. Caregivers should be approached by the practice team at an early stage and consistently signposted to help and support services. In order to support care settings successfully, it is important to consider the triadic constellation of needs, wishes and stresses of both the caregiver and the care recipient. More training and greater involvement of practice staff in the support and identification of caregivers seems advisable. 

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Family caregivers’ perceived communication self-efficacy with physicians

Objective: Family-centered health care requires successful communication between patient, family caregivers, and healthcare providers. Among all providers, physicians are most likely to interact with caregivers. Using the Family Caregiver Communication Typology, this study examined perceived communication self-efficacy with physicians among four types of caregivers: Manager, Partner, Carrier, and Lone. Method: A cross-sectional online survey included the Family Communication Typology Tool, Communication Perceived Self-Efficacy Scale, the Caregiver Quality of Life-Revised Index, and the Generalized Anxiety Disorder (GAD-2) questionnaire. Results: An online survey of 220 family caregivers currently caring for an adult family member revealed significant differences in communication self-efficacy among family caregiver communication types, revealing that Partner caregivers have the highest perceived communication self-efficacy, and that for some caregiver types, higher perceived communication self-efficacy is associated with certain quality of life dimensions. Conclusions: Differences in communication self-efficacy with physicians among the four caregiver communication types (Manager, Partner, Carrier, and Lone) provide further evidence that the typology represents variance in caregiver communication abilities. Development of future medical curricula targeting communication skill training should include an overview of the typology and communication strategies as these may increase effective communication between physicians and caregivers.

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Experiences of informal caregivers of people with dementia with nursing care in acute hospitals: A descriptive mixed‐methods study

Objectives: To explore the experiences of informal caregivers of people with dementia with the hospitalization of their relative concerning patient care, interactions with nurses, caregivers’ situation and the acute hospital environment. Methods: Mixed‐methods design.MethodsThe data were collected using an online questionnaire among a panel of caregivers (n = 129), together with a focus group and individual interviews from February to November 2019. The data were triangulated and analysed using a conceptual framework. Results: Almost half of the respondents were satisfied with the extent to which nurses considered the patient's dementia. Activities to prevent challenging behaviours and provide person‐centred care were rarely seen by the caregivers. Caregivers experienced strain, intensified by a perceived lack of adequate communication and did not feel like partners in care; they also expressed concern about environmental safety. A key suggestion of caregivers was to create a special department for people with dementia, with specialized nurses. Conclusion: Positive experiences of caregivers are reported in relation to how nurses take dementia into account, involvement in care and shared decision making. Adverse experiences are described in relation to disease‐oriented care, ineffective communication and an unfamiliar environment. Caregivers expressed increased involvement when included in decisions and care when care was performed as described by the triangle of care model. Caregivers reported better care when a person‐centred approach was observed. Outcomes can be used in training to help nurses reflect and look for improvements. Impact: This study confirms that caregivers perceive that when they are more involved in care, this can contribute to improving the care of patients with dementia. The study is relevant for nurses to reflect on their own experiences and become aware of patients’ caregivers’ perspectives. It also provides insights to improve nurses’ training and for organizations to make the care and environment more dementia‐friendly.

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Communication in home care: Understanding the lived experiences of formal caregivers communicating with persons living with dementia

Background: Little is known about formal caregivers’ lived experiences communicating with persons living with dementia (PLWD) who live in their own homes. Most information comes from research conducted in long‐term care settings or home care settings involving family care partners. Yet, there are expected needs and rising demands for formal caregivers to provide support within clients’ homes. Objectives: Accordingly, this study aimed to understand the lived experiences of personal support workers (PSWs) regarding their communication with PLWD who live in their own homes. Methods: The study was grounded in a hermeneutic phenomenological research approach. Data were collected as part of the Be EPIC project, an evidence‐informed, person‐centred communication intervention for PSWs caring for PLWD. One, in‐depth semi‐structured interview was conducted with each of the PSWs (N = 15). Thematic analysis was completed on the interviews. Results: Three major themes emerged: (1) Challenged by dementia‐related impairments; (2) Valuing communication in care; and (3) Home is a personal space. Findings revealed that PSWs experience difficulties communicating with PLWD because of dementia‐related impairments, despite PSWs recognizing the importance of communication when they provide optimal care in the homes of PLWD. This suggests that PSWs view communication as a crucial component of quality care but do not possess the skills necessary to ensure effective interactions. Findings also demonstrated the importance, uniqueness and impact of the personal home space on PSWs’ experiences with communication. Conclusion: Overall, findings indicate that PSWs acknowledge the importance of communication as an integral element of providing optimal care, but dementia‐related impairments and the intimate, personal home‐based care context can hinder successful communication between PSWs and PLWD. The implications of the findings are that additional and targeted education and training are required for PSWs, especially on how dementia‐related impairments impact communication within the context of home care based services for PLWD.

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Care for caregivers- a mission for primary care

Background: The number of elderly people living in the community who are limited in daily activities is increasing worldwide. This generates prolonged care, which usually falls on one family member, the family caregiver. Caregivers are prone to develop psychosocial and physical symptoms. As a result, the World Health Organization (WHO) issued a clear directive to assess and support these caregivers. Objectives: The main goals of this study were to assess primary care physicians’ (PCP) awareness to caregivers’ health risks and the extent that they recommended preventive measures to maintain the health of the caregivers. As no suitable instrument existed, a secondary goal was to develop a scale to measure physicians’ awareness to caregivers’ health and preventive treatment and test it’s psychometric properties. Methods: Data were collected from a convenience sample of 201 PCP interviewed with structured questionnaires. Results: The participants’ mean age was 48.5 ± 11.2 years and 53.5% were female. Only 48.5% were Israel medical graduates and 72% were board-certified family physicians. Nearly 34% had been primary caregivers of family members. Most physicians (83.6%) were aware of the primary caregiver’s high-risk for morbidity and mortality, and recommended preventive care. On a multivariate regression, PCP's higher level of risk awareness, their country of medical school and board certification were significant for explaining recommendations for preventive care. However, being a primary caregiver for a sick family member neither contributed significantly to the physicians’ awareness to caregiving risks nor to their preventive care. Conclusion: Although a high percentage of physicians were aware and concerned about caregivers’ health, their preventive care activities were relatively passive. PCPs should take a more active and preventive role for maintaining caregivers’ health. 

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Using a Mechanical Lift at Home

The article is part of a series, which supporting Family Caregivers, and published in collaboration with the AARP Public Policy Institute. Topics discussed include results of focus groups, conducted as part of the AARP Public Policy Institute's No Longer Home Alone video project, supported evidence that family caregivers; and this series of articles and accompanying videos aims to help nurses provide caregivers with the tools they need to manage their family member's health care at home.

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Young adults suffering from mental illness: Evaluation of the family‐centred support conversation intervention from the perspective of mental healthcare professionals

Aims and objectives: To explore how mental healthcare professionals' experience and evaluate the use of Family‐Centred Support Conversation Intervention. Background: Mental health professionals working in the community mental health service provide treatment, care and support to young adults suffering from mental illness. Young adults suffering from mental illness are dependent on other family members and live close to the family. The Family‐Centred Support Conversation promotes healing and alleviates the suffering of the family. Design and methods: A qualitative explorative design was used. Individual interviews with health professionals (n = 13) were conducted in Norway and analysed using a phenomenographic approach. The COREQ checklist was used. Results: Three descriptive categories emerged: A new tool in the toolbox, the family as a conversational partner and Implementing the intervention, with seven conceptions. The mental health professionals had no previous routine for family support. The conversations helped them to structure the involvement of family members. Having the family as a conversational partner together with the patients was considered both somewhat new and rewarding but also challenging. The mental health professionals described a need to adjust the intervention. Conclusions: The Family‐Centred Support Conversation was described as a complement to care, as usual, structuring the involvement of families. The knowledge exchange between the families and the mental health professionals may create a context of changing beliefs, strengths and resources. Relevance to clinical practice: Clinical practice is challenged to work on establishing a mindset; whereby, the family is regarded as a resource with important skills and life experience. The family should be offered individualised support and follow‐up, and FCSC may be a relevant intervention.

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Training Professionals to Facilitate Future Planning for Aging Caregivers: Exploratory Results From a Multistate Intervention

Background: Planning for the future is important for individuals with intellectual and/or developmental disabilities (I/DD) and their families. When caregivers are no longer able to provide support, individuals with I/DD may experience loss of services or benefits, residential or employment‐related disruption, or other adverse consequences. Up until now, most future planning related interventions and approaches have been focused on directly supporting families and individuals with I/DD. Methods: We present findings from a training intervention designed for professionals who work with individuals with I/DD and their families, suggesting that future planning be included in service provision and community outreach. Results: Training participants increased their confidence in helping families plan and their likelihood to take action after participating in a 1‐day training. Conclusions: We discuss the implications of developing disability professionals as allies and resources to families as they engage in future planning activities. 

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Supportive nursing care for family caregivers – A retrospective nursing file study

Background: Family caregivers enable patients to be cared for and die at home whereas nurses aim to support the family caregivers of these patients. Information on how this support is provided and how this is documented in nursing files is largely lacking. Objectives: To gain insight in nurses' reports on the supportive care for family caregivers. Methods: We studied 59 nursing files of adult patients who had received hospice home care in the Netherlands from 4 home care organisations between August 2017 and October 2018. Information on supportive nursing care for family caregivers was retrieved from the nursing files based on a prestructured form. Data was quantitatively and qualitatively analysed. Findings: 54 out of 59 nursing files contained information about family caregivers; 40 files contained nursing diagnoses on family caregivers and in 26 files nursing interventions on supportive care for family caregivers were reported. Only half of the nursing files contained information about supportive nursing care for family caregivers. Conclusions: Complete nursing documentation of provided care to family caregivers is needed. • Nurses should pay attention to the family caregivers' needs and experiences in palliative care. • Nursing documentation on supporting family caregivers is found to be incomplete. • Reported interventions to support family caregivers in palliative care were scarce. • Nurses may take into account two roles in the care for family caregivers: co-client and co-worker. • Assessment tools and proper documentation may help nurses to support family caregivers.

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Support, needs and expectations of family caregivers regarding general practitioners – results from an online survey

Background: Family caregivers are often the first line of support for people requiring care; although they may personally stand to benefit, these activities substantially increase the risk of physical and emotional stress. General practitioners (GPs) may provide important support and stabilisation, but need to adjust to the needs and expectations of this group in order to do so. Objectives: The aim of the study was to compare the needs of family caregivers from GPs to the support they actually experience. Additional aims included determining the main factors affecting satisfaction amongst family caregivers with support from GPs. The results were used to develop possible approaches towards optimisation within the purview of general medical practice. Methods: Between January and July 2020, 612 people supporting or caring for a family member responded to an online survey posted in seventeen internet forums focused on family caregivers. In addition to the descriptive analysis, a t-test with independent samples was used to identify significant differences between two groups. We also used binary logistic regression analysis to identify indications of potentially influential factors regarding the experienced support from GPs. Results: Around three out of every four respondents (72%) consulted GPs in care matters. The respondents gave positive responses on their GP's knowledge of the care situation (71%), approachability in various issues connecting with care and service towards the caregiver (82%). GPs' efforts in meeting the needs and requirements of the care recipient were also rated positively (82%). Weaknesses in support from GPs mainly involved the lack of information on advice and assistance services (55%) as well as frequently not identifying or involving caregivers as such soon enough (42%). Results from regression analysis show that the last two aspects play a major role in subjective satisfaction amongst family caregivers with support from GPs. Conclusions: We recommend that GPs undergo further training to reinforce awareness that the care triad of needs, requirements and stresses amongst family caregivers also plays a vital role in care outcomes. With this in mind, general practice staff should adopt a pre-emptive strategy towards approaching family members about potential issues and informing them about existing assistance and support services.

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Relationship-centred CogniCare: an academic–digital–dementia care experts interface

Purpose: This paper aims to reports on an academic–industry service development innovation to advance the symptom monitor and track feature within the CogniCare app to support family carers of people living with dementia. Expert opinion from dementia care professionals identified key monitoring strategies for enhanced carer competence and confidence in the early identification of relevant symptoms that would help facilitate meaningful hospital/social care consultations. Design/methodology/approach: A co-production approach between industry and academia included stakeholder representation from NHS Highland and Alzheimer Scotland. Dementia care experts validated items to be included for symptom monitoring and tracking using a newly developed A2BC2D2EF2 framework as part of this project and recommended additional strategies for monitoring symptom change, including carer well-being. Findings: Dementia care experts perceived the symptom monitoring and track feature to have the potential to support family carers with dementia care at home and foster a relationship-centred approach to dementia care to facilitate meaningful hospital/social care consultations. Originality/value: The CogniCare app is the first platform of its kind that aims to support family carers to care for people living with dementia at home. This unique service development collaborative combined dementia and digital expertise to create innovative digital solutions for dementia care. The proposed monitoring and tracking feature is perceived by dementia care experts as a tool with the potential to enhance carer confidence and thus enable safe and effective dementia care within the home environment.

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Positive Aspects of Family Caregiving for Older Adults at End-of-Life: A Qualitative Examination

Background: Family caregivers of older adults with dementia have significant challenges across many domains. While this role has been found to be burdensome on the caregiver, increasingly, though, there are also significant positive aspects reported by caregivers (known as the positive aspects of caregiving—PAC). Methods: This participatory qualitative study of 30 United States caregivers of family members age 65 and older who died with a dementia-related diagnoses used in-depth qualitative interviews and directed content analysis to understand the data. The study addressed a gap in the research literature and asked about caregiver's positive experiences during their family members' last weeks of life and investigated what this meant for the caregiver. Findings: Three primary themes were identified: (1) The Importance and Impact of Family Traditions/Celebrations, (2) Use of Humor in Living and the Difficult Experiences at End-of-Life, and (3) "The Gift of Caregiving." Conclusions: These findings are explored and reviewed in light of other research looking at the positive aspects of caregiving for caregivers taking care of persons living with dementia, finding concurrence and some uniqueness across the results. Implications of the findings for families and social work professionals are reviewed.

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Perceptions of Care Quality during an Acute Hospital Stay for Persons with Dementia and Family/Carers

Objectives: to report on acute hospital care experiences for persons with dementia and family/carers in a pilot study (PiP) of person-centred care compared with usual care. Methods: participants were recruited from one acute aged care ward and one mixed medical/surgical ward. One-on-one interviews occurred soon after discharge using a semi-structured interview guide framed by person-centred principles whereby the person is: V—valued; I—treated as an individual; P—perceived as having a unique identity; and S—supported socially and psychologically. Data were analysed deductively with reference to these a priori principles. Results: 11 consented persons with dementia and 36 family/carers participated. A total of eight core VIPS concepts were derived from the data. While many occasions of person-centred care occurred, there was variability in staff expertise, interest and aptitude for dementia care work. Neglect of person-centred principles more frequently occurred for the usual care group, where staff failed to place the person and their family/carer at the centre of service. Conclusions: person-centred services for persons with dementia requires that hospital executive equip staff with the relevant knowledge, skills and support to adhere to person-centred care guidelines. Hospitals must address workplace cultures and procedures that favour organisational systems over person-centred services.

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Patients' and family members' perspectives on the benefits and working mechanisms of family nursing conversations in Dutch home healthcare

Objectives: The aim of this study is to propose a model of the benefits and working mechanisms of family nursing conversations in home healthcare from the perspective of participating patients and their family members. Background: Family nursing conversations in this study are intended to optimise family functioning, improve collaboration between family and professional caregivers and ultimately prevent or reduce overburden of family caregivers. Methods: In a qualitative grounded theory design, data were collected in 2017 using intensive interviewing with participants of family nursing conversations in home healthcare. A total of 26 participants (9 patients and 17 family members) from 11 families participated in a family nursing conversation and the study. Seven nurses who received extensive education in family nursing conversations conducted them as part of their daily practice. Interviews occurred 4–6 weeks after the family nursing conversation. Results: The model that was constructed in close collaboration with the families consists of three parts. The first part outlines working mechanisms of the conversation itself according to participants, i.e. structured and open communication about the care situation and the presence of all of the people who are involved. The second part consists of the benefits that participants experienced during and immediately after the conversation – an increased sense of overview and improved contact among the people involved – and the related working mechanisms. The last part consists of benefits that emerged in the weeks after the conversation – reduced caregiver burden and improved quality of care – and the related working mechanisms. Insight into the benefits and working mechanisms of family nursing conversations may assist healthcare professionals in their application of the intervention and provides directions for outcomes and processes to include in future studies.

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The Relationships between Health Professionals' Perceived Quality of Care, Family Involvement and Sense of Coherence in Community Mental Health Services

Background: Mental health professionals have a responsibility to ensure the best possible quality of care. Family is strongly involved in the patient's everyday life. Objectives: The aim of this study was to investigate the relationship between health care professionals' perception of the quality of care, attitudes of family involvement and their own sense of coherence. Methods: A descriptive quantitative study with fifty-six health professionals, completed "Quality in Psychiatric Care–Community Outpatient Psychiatric Staff", "Families' Importance in Nursing Care–health professionals' attitudes", "The Sense of Coherence Scale-13". Results: The health professionals perceived quality as high and did not perceive the families as a burden.

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The Perceptions of Nurses and Nursing Students Regarding Family Involvement in the Care of Hospitalized Adult Patients

Background: Over the past few decades, there have been concerns regarding the humanization of healthcare and the involvement of family members in patients' hospital care. The attitudes of hospitals toward welcoming families in this respect have improved. In Arab culture, the main core of society is considered to be the family, not the individual. Objectives: The objective behind involving family in patient care is to meet patients' support needs. Consequently, this involvement affects nurses and their attitudes toward the importance of family involvement in patient care. Objectives: To describe nurses' and nursing students' perceptions of family involvement in the care of hospitalized adult patients in Saudi Arabia. Design: This study used a quantitative descriptive cross-sectional design. The data were collected using a convenience sampling survey via social media. Results: A total of 270 participants (staff and students) took part in this study, including 232 (85.9%) females and 38 (14.1%) males. Moreover, a high percentage of participants (78.8%) acknowledged that family presence strongly affected the improvement of the patient's condition. However, 69.3% of participants thought that involving family members during special care processes or cardiopulmonary resuscitation (CPR) would be traumatizing for these individuals. Moreover, there was a significant diffidence between the attitudes of the nurses and nursing students toward family involvement and the number of years of employment (F = 3.60, p < 0.05). On the contrary, there were insignificant differences between the attitudes of the nurses and nursing students toward family involvement and their gender, nationality, age, education level, and years of work experience in Saudi Arabia (p > 0.05). Furthermore, the regression analysis showed a significant negative correlation between nurses' years of employment and their support of family involvement in patient care (ß = −0.20, SE = 0.08, t = −2.70, p = 0.01). Conclusions: Nurses with more experience showed no support for family involvement in patient care. We have to consider the clinical barriers that affect nurses' support for family involvement in patient-centered care, such as hospital polices, guidelines, and the model used for family-centered care integration in the hospital system to facilitate the interaction between healthcare providers and family members.

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Oral Care Experiences of Palliative Care Patients, Their Relatives, and Health Care Professionals: A Qualitative Study

Background: Oral symptoms in a growing number of palliative care patients are often neglected. Dental professionals are not always involved in palliative care. Oral care is often inadequately delivered to palliative care patients, while oral problems can affect the quality of life. Methods: A qualitative study was conducted to explore oral care experiences of palliative care patients, their relatives, and health care professionals (HCPs). Four patients, 4 relatives, and 4 HCPs were interviewed in a hospice. Transcripts were analyzed using thematic analysis and revealed 3 themes. Findings: Patients who were capable of performing oral care mainly brushed their teeth and looked after their dentures. Other care tended to be carried out by relatives and HCPs, adapted based on a person's level of consciousness. When describing the effects on oral health, relatives and HCPs tended to focus on xerostomia, whereas patients provided detailed accounts denoting the psychological and social impact of oral symptoms. Perceptions of enablers and barriers to oral care differed between groups. Conclusions: Patients reported lack of access to professional dental care and patients' fatigue were the main barriers to oral care. Nevertheless, there is great scope for further research into good oral care practices identified in this study and possible implementation in other settings.

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Implementing a Reablement Intervention, "Care of People With Dementia in Their Environments (COPE)": A Hybrid Implementation-Effectiveness Study

Background and Objectives: The translation of reablement programs into practice is lagging despite strong evidence for interventions that maintain function for the person living with dementia as well as improve carer well-being. The aim was to evaluate the implementation of an evidence-based program, Care of People with Dementia in Their Environments (COPE), into health services. Research Design and Methods: An implementation-effectiveness hybrid design was used to evaluate implementation outcomes while simultaneously involving a pragmatic pre–post evaluation of outcomes for people with dementia. We report uptake, fidelity to intervention, outcomes for people living with dementia and carers, and beliefs and behaviors of interventionists contributing to successful implementation. Results: Seventeen organizations in Australia across 3 health contexts, 38 occupational therapists, and 17 nurses participated in training and implementation. While there were challenges and delays in implementation, most organizations were able to offer the program and utilized different models of funding. Overall, we found there was moderate fidelity to components of the program. Pre–post outcomes for carer well-being and coping (Perceived Change Index, p < .001) and activity engagement of the person living with dementia (p = .002) were significantly increased, replicating previous trial results. What contributed most to therapists implementing the program (Determinants of Implementation Behaviour Questionnaire) was a stronger intent to deliver (p < .001), higher confidence (p < .001), a sense of control in delivery (p = .004), and a belief the program was very useful to their clients (p = .002). Discussion and Implications: This study demonstrated that implementation is possible in multiple health systems and beneficial to individuals and their families.

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The impact of uncertainty on bereaved family's experiences of care at the end of life: a thematic analysis of free text survey data

Background: Inequities in the provision of palliative care for people with cardiac disease have been well documented in the literature. Despite experiencing significant palliative care needs, those with cardiac disease are less likely to be referred to specialist palliative care services and more likely to die in a hospital when compared to those with cancer. The unpredictable trajectory of heart failure has been identified as a key barrier to providing palliative care with many people experiencing a long period of stability with appropriate medical treatment. However, as the disease progresses and cardiac function deteriorates, exacerbations of acute decompensation can lead to what is often perceived to be 'sudden' death. The aim of this study is to explore the impact of uncertainty on how death is remembered by bereaved family members of people with heart disease. Methods: Thematic analysis of free text collected during a postal survey of bereaved family's experiences of healthcare services in the last 3 months of life using the New Zealand version of the VOICES questionnaire was undertaken. Data was analysed using a three-dimensional conceptual framework of "scientific uncertainty". Results: Eight hundred and twenty-seven completed questionnaires were received of which 12.6% (n = 105) indicated that they had cared for someone at the end of life with cardiac disease. Experiences of uncertainty were found to have a significant impact upon bereaved family. Four key themes were identified; distrust in healthcare professionals, stories left incomplete, loss, regret and missed opportunity and disempowerment. Conclusions: This study highlights the ongoing impact on bereaved family when uncertainty is not made explicit in conversations regarding end of life for people with heart disease. Timely and sensitive conversations regarding the uncertainty of when death may occur is an important factor in ensuring that bereaved family are not left with unresolved narratives. Reframing how we think and talk about uncertainty in end of life care is important, as clinicians' uncertainties may not always reflect or match up with families' uncertainties. Being explicit about our inability to be certain about the timing of death may thus lead to a more positive and complete experience for bereaved family.

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"I decide myself"- A qualitative exploration of end of life decision making processes of patients and caregivers through Advance Care Planning

Background: The Singapore national Advance Care Planning (ACP) programme was launched in 2011 with the purpose of ensuring that healthcare professionals are fully aware of patients' treatment preferences. There is little research assessing the performance of such programmes in ethnically diverse Asian countries; hence, the purpose of this study was to qualitatively examine patients and caregivers' experiences with the ACP programme. Method: We conducted interviews with 28 participants, thirteen of whom identified as proxy decision makers (PDMs) and the remainder as patients. Interviews focused on respondents' experiences of chronic illness and of participating in the ACP programme. Textual data was analysed through a framework analysis approach. Results: Participants' narratives focused on four major themes with 12 subthemes: a) Engagement with Death, factors influencing respondents' acceptance of ACP; b) Formation of Preferences, the set of concerns influencing respondents' choice of care; c) Choice of PDM, considerations shaping respondents' choice of nominated health spokesperson; and d) Legacy Solidification, how ACP is used to ensure the welfare of the family after the patient passes. These findings led to our development of the directive decision-making process framework, which delineates personal and sociocultural factors influencing participants' decision-making processes. Respondents' continual participation in the intervention were driven by their personal belief system that acted as a lens through which they interpreted religious doctrine and socio-cultural norms according to their particular needs. Conclusion: The directive decision-making process framework indicated that ACP could be appropriate for the Asian context because participants displayed an awareness of the need for ACP and were able to develop a concrete treatment plan. Patients in this study made decisions based on their perceived long-term legacy for their family, who they hoped to provide with a solid financial and psychological foundation after their death. 

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Health promotion in adults with Down’s syndrome: Experiences of caregivers

Background: Individuals with Down’s syndrome rely on caregivers to support lifestyle behaviour change. It is therefore important to understand how caregivers put health recommendations into practice. Methods: Through conducting semi-structured interviews, the present study sought to understand the facilitators and barriers that caregivers faced when implementing health promotion advice. Five interviews were conducted with paid support staff and four with family carers of individuals attending a specialist multidisciplinary Down’s syndrome health promotion screening clinic. Findings: Three main themes emerged in their accounts, including active promotion of weight management by caregivers, benefits of working practices such as record keeping and communication channels and the importance of having access to social care services and recreational activities. Conclusions: These findings have important implications for professionals working in specialised healthcare settings who may be able to tailor communication and services to better meet the needs of individuals with Down’s syndrome and their caregivers.

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Health care staff's strategies to preserve dignity of migrant patients in the palliative phase and their families. A qualitative study

Aims: To determine registered nurses' and care assistants' difficulties and strategies for preserving dignity of migrant patients in the last phase of life and their families. Background: Preserving dignity of patients in a palliative phase entails paying attention to the uniqueness of patients. Migrant patients often have particular needs and wishes that care staff find difficult to address, or meet, and hence the patient's dignity might be at stake. Methods: We performed five focus group discussions with care staff and one with key figures with diverse ethnic backgrounds in the Netherlands (2018–2020). Thematic analysis was used. Results: Care staff creatively safeguarded the patient's dignity in daily care by attending to personal needs concerning intimate body care and providing non‐verbal attention. Care staff had difficulties to preserve dignity, when the patient's family engaged themselves in the patient's choices or requests. According to care staff, the interference of family impeded the patient's quality of life or threatened the patient's dignity in the last days, or family member's choices (seemingly) prevailed over the patient's wishes. Care staff safeguarded dignity by catering to cultural or religious practices at the end of life and employing cultural knowledge during decision making. Key figures emphasized to make decisions with patient and family together and to listen more carefully to what patients mean. Bypassing family was experienced as harmful, and repetitively informing family, about, for example, the patient's disease or procedures in the nursing home, was experienced as ineffective. Conclusion: To preserve the patient's dignity, attention is needed for relational aspects of dignity and needs of family, next to patients' individual needs. Impact: Care staff should be supported to employ strategies to engage family of migrant patients, by, for example, acknowledging families' values, such as giving good care to the patient and the importance of religious practices for dignity.

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Gendered experiences of providing informal care for older people: a systematic review and thematic synthesis

Background and purpose: The caregiving’s impact on informal carers’ quality of life and gender-based stereotypes make older individuals’ informal care a complex process for which our knowledge is still limited. The purpose of this review is to identify how gender relates to informal carers’ experiences of providing care for people aged 60 years and over with mental and physical health needs by synthesising the available empirical data published between 2000 to 2020. Design and methods: The systematic method for reviewing and synthesising qualitative data was performed using the PRISMA checklist and ENTREQ statement. The CASP tool was used to examine the quality of the included papers. Thematic synthesis was used as the methodological framework. Results: This review produced two analytical themes, the impact of gender on the caregivers’ labour and negotiating gender identity with self, society, and cultural norms. While informal caregivers share motivators, a linkage between traditional gender stereotypes impacts caregiving burden and coping strategies. Informal carers’ experiences entail a constant pursuit of self-agency after acquiring the caregiver role. Cultural values and their intersection with gender appear to influence caregivers’ healthy adjustment into their new caregiving identities. The flexibility to move beyond gender boundaries could mediate caregivers’ negotiations between self and society on developing their new caregiving identity. Providing intensive informal primary care to older people affects both men’s and women’s mental and physical health. Gender ideals of the feminine nurturing role further disadvantage women as they determine the caregiving arrangements, the strategies and resources to sustain the caring burden, and the adaptability to experience their new caregiving role positively. Men appear more flexible to debate their hegemonic masculinity and defend their existence in the caregiving role. Conclusion and implications: Transgressing gender lines and expanding gender possibilities can ease the caregiving burden and strengthen caregivers coping potentials. Health professionals can empower informal careers to challenge gender binaries and expand gender possibilities by intentionally injecting the language of diversity in caring information and caring processes. The review findings outline a path for research on gender identity development in older people’s care.

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Gendered experiences of providing informal care for older people: a systematic review and thematic synthesis

Background and purpose: The caregiving’s impact on informal carers’ quality of life and gender-based stereotypes make older individuals’ informal care a complex process for which our knowledge is still limited. The purpose of this review is to identify how gender relates to informal carers’ experiences of providing care for people aged 60 years and over with mental and physical health needs by synthesising the available empirical data published between 2000 to 2020. Design and methods: The systematic method for reviewing and synthesising qualitative data was performed using the PRISMA checklist and ENTREQ statement. The CASP tool was used to examine the quality of the included papers. Thematic synthesis was used as the methodological framework. Results: This review produced two analytical themes, the impact of gender on the caregivers’ labour and negotiating gender identity with self, society, and cultural norms. While informal caregivers share motivators, a linkage between traditional gender stereotypes impacts caregiving burden and coping strategies. Informal carers’ experiences entail a constant pursuit of self-agency after acquiring the caregiver role. Cultural values and their intersection with gender appear to influence caregivers’ healthy adjustment into their new caregiving identities. The flexibility to move beyond gender boundaries could mediate caregivers’ negotiations between self and society on developing their new caregiving identity. Providing intensive informal primary care to older people affects both men’s and women’s mental and physical health. Gender ideals of the feminine nurturing role further disadvantage women as they determine the caregiving arrangements, the strategies and resources to sustain the caring burden, and the adaptability to experience their new caregiving role positively. Men appear more flexible to debate their hegemonic masculinity and defend their existence in the caregiving role. Conclusion and implications: Transgressing gender lines and expanding gender possibilities can ease the caregiving burden and strengthen caregivers coping potentials. Health professionals can empower informal careers to challenge gender binaries and expand gender possibilities by intentionally injecting the language of diversity in caring information and caring processes. The review findings outline a path for research on gender identity development in older people’s care.

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Features of primary care practice influence emergency care-seeking behaviors by caregivers of persons with dementia: A multiple-perspective qualitative study

Background: Persons with dementia use emergency department services at rates greater than other older adults. Despite risks associated with emergency department use, persons with dementia and their caregivers often seek emergency services to address needs and symptoms that could be managed within primary care settings. As emergency departments (EDs) are typically sub-optimal environments for addressing dementia-related health issues, facilitating effective primary care provision is critical to reduce the need for, or decision to seek, emergency services. The aim of this study is to explore how features of primary care practice influence care-seeking decisions by community-dwelling persons with dementia and familial caregivers. Methods: Semi-structured qualitative interviews were conducted with 27 key dementia-care stakeholders (10 primary care/geriatrics providers, 5 caregivers, 4 emergency medicine physicians, 5 aging service providers, and 3 community paramedics) from multiple health systems. Transcripts from audio recordings were analyzed using a thematic analysis framework to iteratively code and develop emergent themes. Features of primary care were also synthesized into lists of tangible factors leading to emergency care-seeking and those that help prevent (or decrease the need for) ED use. Findings: Stakeholders identified eight categories of features of primary care encompassing the clinical environment and provision of care. These collapsed into four major themes: (1) clinic and organizational features—including clinic structure and care team staffing; (2) emphasizing proactive approaches to anticipate needs and avoid acute problems—including establishing goals of care, preparing for the future, developing provider–patient/provider–caregiver relationships, and providing caregiver support, education, and resources to help prevent emergencies; (3) health care provider skills and knowledge of dementia—including training and diagnostic capabilities; and (4) engaging appropriate community services/resources to address evolving needs. Conclusions: Features of primary care practice influence decisions to seek emergency department care at the system, organizational/clinic, medical, and interpersonal levels, particularly regarding proactive and reactive approaches to addressing dementia-related needs. Interventions for improving primary care for persons with dementia and their caregivers should consider incorporating features that facilitate proactive family-centered dementia care across the four identified themes, and minimize those leading to caregiver decisions to utilize emergency services.

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Family physician’s and primary care team’s perspectives on supporting family caregivers in primary care networks

Background: Research, practice, and policy have focused on educating family caregivers to sustain care but failed to equip healthcare providers to effectively support family caregivers. Family physicians are well-positioned to care for family caregivers. Methods: We adopted an interpretive description design to explore family physicians and primary care team members’ perceptions of their current and recommended practices for supporting family caregivers. We conducted focus groups with family physicians and their primary care team members. Results: Ten physicians and 42 team members participated. We identified three major themes. “Family physicians and primary care teams can be a valuable source of support for family caregivers” highlighted these primary care team members’ broad recognition of the need to support family caregiver’s health. “What stands in the way” spoke to the barriers in current practices that precluded supporting family caregivers. Primary care teams recommended, “A structured approach may be a way forward.” Conclusion: A plethora of research and policy documents recommend proactive, consistent support for family caregivers, yet comprehensive caregiver support policy remains elusive. The continuity of care makes primary care an ideal setting to support family caregivers. Now policy-makers must develop consistent protocols to assess, and care for family caregivers in primary care. 

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Family perceptions of quality of end of life in LGBTQ+ individuals: a comparative study

Background: Members of the lesbian, gay, bisexual, transgender, and queer community have encountered discrimination and stigmatization related to sexual orientation and/or gender identity both within healthcare establishments and in the larger community. Despite the literature describing inequities in healthcare, very little published research exists on the experiences of lesbian, gay, bisexual, transgender, and queer patients and family members in hospice care. Methods: A quantitative comparative descriptive design explored the difference in end-of-life experiences between a lesbian, gay, bisexual, transgender, and queer and non-lesbian, gay, bisexual, transgender, and queer cohort. One hundred and twenty-two family members of individuals who have died while under hospice care in the past 5 years completed the Quality of Dying and Death Version 3.2a Family Member/Friend After-Death Self-Administered Questionnaire. Results: Comparison of the experiences of the lesbian, gay, bisexual, transgender, and queer cohort (n = 56) and non-LGBTQ cohort (n = 66) yielded varying results, with the LGBTQ cohort experiencing lower quality end of life in some Quality of Dying and Death measures and no statistically significant difference from the non-LGBTQ cohort in others. Discussion: The findings from this study in combination with previously published works on lesbian, gay, bisexual, transgender, and queer health support the position that hospice providers must take concrete steps to ensure that professional caregivers and office staff are qualified to meet the needs of this marginalized population.

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Family involvement in the Namaste care family program for dementia: A qualitative study on experiences of family, nursing home staff, and volunteers

Background: Family caregivers may experience difficulty maintaining meaningful contact with a relative with advanced dementia. Nevertheless, some family caregivers prefer to remain involved in the care of their relative after admission to a nursing home. Family involvement in the care is important but little is known about how this works in practice and what exactly is needed to improve it. Objective: To examine experiences of family caregivers, staff and volunteers with family caregiver participation in the Namaste Care Family program, a psychosocial intervention to increase quality of life for people with advanced dementia that may help family caregivers to connect with their relative. Further, we aimed to examine facilitators of and barriers to family participation. Methods: exploratory qualitative design using semi-structured interviews. Ten nursing homes in the Netherlands. Ten family caregivers, 31 staff members and 2 volunteers who participated in the Namaste Care Family Program. Qualitative interview study using thematic analysis. Interviews were held with family caregivers, staff members, and volunteers about their experiences with the Namaste Care Family program. Results: In general, family caregivers experienced their involvement in the Namaste Care Family program as positive, particularly the meaningful connections with their relative. However, putting family involvement into practice was challenging. We identified three themes covering facilitators for and barriers to participation: (1) Preferences of family caregivers for activities with their relative (Activities): practical activities matching one's own interests were seen as facilitating, while perceived lack of knowledge and reluctance to engage with other residents were barriers. (2) Communication between family caregivers, staff and volunteers (Communication): providing clear information about the program to family caregivers facilitated their involvement. Feeling insecure inhibited family involvement. (3) Personal context of family caregivers (Personal circumstances): feeling fulfillment and being appreciated facilitated involvement. Older age, having a family of their own, a job and complex family relations were barriers to family caregiver involvement. Conclusions: To optimize family involvement, it is important to adopt a family-centered approach and provide training and guidance. Making a personal, comprehensive plan with family caregivers and offering them guidance can help them overcome their uncertainty and remove barriers to being more involved with a care program aiming to improve the quality of life of their relative. Also recommended is training for staff to improve communication with family caregivers. The Namaste study is registered with the Netherlands Trial Register (NTR5692).

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Family caregivers' perceived level of collaboration with hospital nurses: A cross‐sectional study

Aim: To describe the extent of perceived collaboration between family caregivers of older persons and hospital nurses. Background: Collaboration between hospital nurses and family caregivers is of increasing importance in older patient's care. Research lacks a specific focus on family caregiver's collaboration with nurses. Method: Using a cross‐sectional design, 302 caregivers of older patients (≥70 years) completed the 20‐item Family Collaboration Scale with the subscales: trust in nursing care, accessible nurse and influence on decisions. Data were analysed with descriptive statistics and bivariate correlations. Results: Family caregivers rated their level of trust in nurses and nurses' accessibility higher than the level of their influence on decisions. Family caregivers who had more contact with nurses perceived higher levels of influence on decisions (p ≤ .001) and overall collaboration (p ≤ .001). Conclusion: Family caregivers' collaboration with nurses can be improved, especially in recognizing and exploiting family caregivers as partner in the care for older hospitalized persons and regarding their level of influence on decisions. Implications for Nursing Management: Insight into family caregivers' collaboration with nurses will help nurse managers to jointly develop policy with nurses on how to organise more family caregivers' involvement in the standard care for older persons.

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Experiences of bereaved family caregivers with shared decision making in palliative cancer treatment: a qualitative interview study

Background: Patients with incurable cancer face complex medical decisions. Their family caregivers play a prominent role in shared decision making processes, but we lack insights into their experiences. In this study, we explored how bereaved family caregivers experienced the shared decision making process. Methods: We performed a qualitative interview study with in-depth interviews analysed with inductive content analysis. We used a purposive sample of bereaved family caregivers (n = 16) of patients with cancer treated in a tertiary university hospital in the Netherlands. Results: Four themes were identified: 1. scenarios of decision making, 2. future death of the patient 3. factors influencing choices when making a treatment decision, and 4. preconditions for the decision making process. Most family caregivers deferred decisions to the patient or physician. Talking about the patient's future death was not preferred by all family caregivers. All family caregivers reported life prolongation as a significant motivator for treatment, while the quality of life was rarely mentioned. A respectful relationship, close involvement, and open communication with healthcare professionals in the palliative setting were valued by many interviewees. Family caregivers' experiences and needs seemed to be overlooked during medical encounters. Conclusions: Family caregivers of deceased patients with cancer mentioned life prolongation, and not quality of life, as the most important treatment aim. They highly valued interactions with the medical oncologist and being involved in the conversations. We advise medical oncologists to take more effort to involve the family caregiver, and more explicitly address quality of life in the consultations.

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The experience of delirium in palliative care settings for patients, family, clinicians and volunteers: A qualitative systematic review and thematic synthesis

Background: Delirium is common in palliative care settings and is distressing for patients, their families and clinicians. To develop effective interventions, we need first to understand current delirium care in this setting. Aim: To understand patient, family, clinicians' and volunteers' experience of delirium and its care in palliative care contexts. Design: Qualitative systematic review and thematic synthesis (PROSPERO 2018 CRD42018102417). Data sources: The following databases were searched: CINAHL, Cochrane Database of Systematic Reviews, Database of Abstracts of Reviews of Effects, Embase, MEDLINE and PsycINFO (2000–2020) for qualitative studies exploring experiences of delirium or its care in specialist palliative care services. Study selection and quality appraisal were independently conducted by two reviewers. Results: A total of 21 papers describing 16 studies were included. In quality appraisal, trustworthiness (rigour of methods used) was assessed as high (n = 5), medium (n = 8) or low (n = 3). Three major themes were identified: interpretations of delirium and their influence on care; clinicians' responses to the suffering of patients with delirium and the roles of the family in delirium care. Nursing staff and other clinicians had limited understanding of delirium as a medical condition with potentially modifiable causes. Practice focused on alleviating patient suffering through person-centred approaches, which could be challenging with delirious patients, and medication use. Treatment decisions were also influenced by the distress of family and clinicians and resource limitations. Family played vital roles in delirium care. Conclusions: Increased understanding of non-pharmacological approaches to delirium prevention and management, as well as support for clinicians and families, are important to enable patients' multi-dimensional needs to be met.

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Engaging the Family in the Care of Young Adults With Substance Use Disorders

Efforts to engage young adults with substance use disorders in treatment often focus on the individual and do not consider the role that the family can play in the recovery process. In summarizing the proceedings of a longitudinal meeting on substance use among young adults, this special article outlines three key principles concerning the engagement of broader family units in substance use treatment: (1) care should involve family members (biological, extended, or chosen); (2) these family members should receive counseling on evidence-based approaches that can enhance their loved one's engagement in care; and (3) family members should receive counseling on evidence-based strategies that can improve their own health. For each principle, we provide an explanation of our guidance to practitioners, supportive evidence, and additional practice considerations.

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Engaging family caregivers and health system partners in exploring how multi-level contexts in primary care practices affect case management functions and outcomes of patients and family caregivers at end of life: a realist synthesis

Background: An upstream approach to palliative care in the last 12 months of life delivered by primary care practices is often referred to as Primary Palliative Care (PPC). Implementing case management functions can support delivery of PPC and help patients and their families navigate health, social and fiscal environments that become more complex at end-of-life.  A realist synthesis was conducted to understand how multi-level contexts affect case management functions related to initiating end-of-life conversations, assessing patient and caregiver needs, and patient/family centred planning in primary care practices to improve outcomes. The synthesis also explored how these functions aligned with critical community resources identified by patients/families dealing with end-of-life. Methods: A realist synthesis is theory driven and iterative, involving the investigation of proposed program theories of how particular contexts catalyze mechanisms (program resources and individual reactions to resources) to generate improved outcomes. To assess whether program theories were supported and plausible, two librarian-assisted and several researcher-initiated purposive searches of the literature were conducted, then extracted data were analyzed and synthesized. To assess relevancy, health system partners and family advisors informed the review process. Results: Twenty-eight articles were identified as being relevant and evidence was consolidated into two final program theories: 1) Making end-of-life discussions comfortable, and 2) Creating plans that reflect needs and values. Theories were explored in depth to assess the effect of multi-level contexts on primary care practices implementing tools or frameworks, strategies for improving end-of-life communications, or facilitators that could improve advance care planning by primary care practitioners. Conclusions: Primary care practitioners’ use of tools to assess patients/families’ needs facilitated discussions and planning for end-of-life issues without specifically discussing death. Also, receiving training on how to better communicate increased practitioner confidence for initiating end-of-life discussions. Practitioner attitudes toward death and prior education or training in end-of-life care affected their ability to initiate end-of-life conversations and plan with patients/families. Recognizing and seizing opportunities when patients are aware of the need to plan for their end-of-life care, such as in contexts when patients experience transitions can increase readiness for end-of-life discussions and planning. Ultimately conversations and planning can improve patients/families’ outcomes.

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The DWQ-EMR Embedded Tool to Enhance the Family Physician-Caregiver Connection: A Pilot Case Study

Background: The number of family caregivers to individuals with dementia is increasing. Family physicians are often the first point of access to the health care system for individuals with dementia and their caregivers. Caregivers are at an increased risk of developing negative physical, cognitive and affective health problems themselves. Caregivers also describe having unmet needs to help them sustain care in the community. Family physicians are in a unique position to help support caregivers and individuals with dementia, but often struggle with keeping up with best practice dementia service knowledge. Methods: The Dementia Wellness Questionnaire was designed to serve as a starting point for discussions between caregivers and family physicians by empowering caregivers to communicate their needs and concerns and to enhance family physicians’ access to specific dementia support information. The DWQ aims to alert physicians of caregiver and patient needs. This pilot study aimed to explore the experiences of physicians and caregivers of people using the Questionnaire in two family medicine clinics in Ontario, Canada. Interviews with physicians and caregivers collected data on their experiences using the DWQ following a 10-month data gathering period. Data was analyzed using content analysis. Results: Results indicated that family physicians may have an improved efficacy in managing dementia by having dementia care case specific guidelines integrated within electronic medical records. By having time-efficient access to tailored supports, family physicians can better address the needs of the caregiver–patient dyad and help support family caregivers in their caregiving role. Caregivers expressed that the Questionnaire helped them remember concerns to bring up with physicians, in order to receive help in a more efficient manner.

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Developing person‐centred care competencies for the healthcare workforce to support family caregivers: Caregiver centred care

Background: Family caregivers (FCGs) are an integral part of the healthcare system. Currently, FCGs provide 70%–90% of the care required by community‐dwelling children and adults living with complex chronic conditions and frailty. Despite FCG's contributions and the growing proportion of distressed caregivers, support for FCGs has not been a health system priority. Researchers have proposed training to enhance the competencies of health providers to work effectively with FCGs. In the absence of best practices for the competency indicators for caregiver‐centred care, we have developed a competency framework for training the health workforce to support FCGs. Objectives: The objectives in this paper are fourfold: (a) a brief review of stakeholder engagement that led to the development of the competencies the health workforce needs to support FCGs, (b) a description of the process used to name the competency domains, (c) a report on the Modified Delphi process (conducted 2019) used to validate the domain indicators, and (d) a description of the competency framework. Methods: We adopted a caregiver and a multilevel interdisciplinary stakeholder codesign approach throughout the competency development process. The competency domains include: (a) Recognising the Caregiver Role, (b) Communicating with FCGs, (c) Partnering with FCGs, (d) Fostering Resilience in FCGs, (e) Navigating Health and Social Systems and Accessing Resources, and, (f) Enhancing the Culture and Context of Healthcare. Our Caregiver‐Centred Care Competencies for the health workforce are only a first step in supporting FCGs in their vital roles. Conclusions: There are few education and training resources to enable and empower health providers to support FCGs, there is an urgent need to develop training resources for the health workforce to recognise and support FCGs.

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Death and Grieving for Family Caregivers of Loved Ones With Life-Limiting Illnesses in the Era of COVID-19: Considerations for Case Managers

Purpose: Family caregivers of a loved one with a life-limiting or terminal illness are often overwhelmed by, and underprepared for, their responsibilities. They often need help from family members and friends to provide comprehensive care. When death occurs, funerals and other death-related rituals bring family and communities together to honor the life and mourn the death of a loved one and provide needed support to family and caregivers. These collective rituals are often deeply rooted in culturally-bound values and can facilitate grief and help make sense about loss. Rituals act as bridge-building activities that allow people to organize and appraise emotions, information, and actions after a loss. With the emergence of the coronavirus disease-2019 (COVID-19) pandemic and the recommended restrictions to reduce infection and transmission, family members and caregivers are often faced with weighing options for honored rituals to help them grieve. Grieving during the pandemic has become disorganized. The purpose of this article is to provide case managers and other clinical staff with recommendations on guiding caregivers/families through safety precautions when a loved one dies either because of a life-limiting illness or from COVID-19 during the pandemic using guidelines from the Centers for Disease Control and Prevention (CDC). The authors also present information about complicated grief and ways to support coping with death and suggest safe alternatives to traditional death-related rituals and funerals in a COVID-19 era. Primary Practice Setting(s): Primary practice settings include home health care, hospice, hospital discharge planning, case management, and primary care. Findings/Conclusions: Precautions necessary in a COVID-19 era may add anxiety and stress to an already difficult situation of caring for loved ones at end-of-life and grieving with their loss. Utilization of CDC guidelines lessens the risk of infection while honoring loved ones' wishes and cultural traditions surrounding death and burial. Recognition of social and spiritual connections that comfort mourners must also be considered. Implications for Case Management Practice: Safety precautions are necessary for families and informal caregivers when death occurs during the COVID-19 era. We need to understand the various constraints of existing resources associated with the death of a loved one (capacity limitations at funeral home, delayed memorial services) and devise creative alternatives. We must acknowledge the increased potential for delayed/prolonged/complicated grief. Identification of resources to support caregivers/families in coping with grief and loss during the pandemic restrictions is needed—mobilizing support in novel ways.

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A cross-european study of informal carers’ needs in the context of caring for older people, and their experiences with professionals working in integrated care settings

Introduction: Informal carers are increasingly relied on for support by older people and the health and social care systems that serve them. It is therefore important that health and social care professionals are knowledgeable about and responsive to informal carers’ needs. This study explores informal carers’ own needs within the context of caregiving; and examines, from the informal carers’ perspective, the extent to which professionals assess, understand and are responsive to informal carers’ needs. Methods: We interviewed (2016–2018) 47 informal carers of older people being served by 12 integrated care initiatives across seven countries in Europe. The interviews were thematically coded inductively and analysed. Results: Informal carers reported that professionals treated them with respect and made efforts to assess and respond to their needs. However, even though professionals encouraged informal carers to look after themselves, informal carers’ needs (e.g., for respite, healthcare) were insufficiently addressed, and informal carers tended to prioritize older people’s needs over their own. Discussion and conclusion: Informal carers need better support in caring for their own health. Health professionals should have regular contact with informal carers and proactively engage them in ongoing needs assessment, setting action plans for addressing their needs, and identifying/accessing appropriate support services. This will be important if informal carers are to continue their caregiving role without adverse effects to themselves.

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A Communication Model to Bridge Adolescent Patients, Caregivers, and Physicians in Transitions of Care

Background: A transition of care (TOC) process from pediatric to adult medicine ensures that adolescents receive ongoing care into young adulthood, a time of high risk for preventable morbidity and mortality. Methods: We explored patient, caregiver, and physician perspectives on ways to improve TOC communication with healthy adolescents. Two researchers conducted key informant interviews with healthy 12- to 18-year-old adolescents, their caregivers, and primary care physicians working in pediatric, internal, and family medicine. Data saturation was reached after interviewing 12 adolescents, 10 caregivers, and 36 physicians. Findings: Three themes were identified: perceptions of TOC; effective communication among the triad of adolescents, caregivers, and providers; and early communication about TOC preparation. From these themes, a model of communication was identified and adapted, outlining the communication skills and responsibilities for physicians and patients during TOC. Conclusions: Physicians must understand how to use strong, consistent, adolescent-centered communication to execute effective TOC.

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Challenges implementing a carer support intervention within a national stroke organisation: findings from the process evaluation of the OSCARSS trial

Objectives: To examine the implementation of an intervention to support informal caregivers and to help understand findings from the Organising Support for Carers of Stroke Survivors (OSCARSS) cluster randomised controlled trial (cRCT). Design: Longitudinal process evaluation using mixed methods. Normalisation process theory informed data collection and provided a sensitising framework for analysis. Setting: Specialist stroke support services delivered primarily in the homes of informal carers of stroke survivors.ParticipantsOSCARSS cRCT participants including carers, staff, managers and senior leaders. Intervention: The Carer Support Needs Assessment Tool for Stroke (CSNAT-Stroke) intervention is a staff-facilitated, carer-led approach to help identify, prioritise and address support needs. Results: We conducted qualitative interviews with: OSCARSS cRCT carer participants (11 intervention, 10 control), staff (12 intervention, 8 control) and managers and senior leaders (11); and obtained 140 responses to an online staff survey over three separate time points. Both individual (carer/staff) and organisational factors impacted implementation of the CSNAT-Stroke intervention and how it was received by carers. We identified four themes: staff understanding, carer participation, implementation, and learning and support. Staff valued the idea of a structured approach to supporting carers, but key elements of the intervention were not routinely delivered. Carers did not necessarily identify as ‘carers’, which made it difficult for staff to engage them in the intervention. Despite organisational enthusiasm for OSCARSS, staff in the intervention arm perceived support and training for implementation of CSNAT-Stroke as delivered primarily by the research team, with few opportunities for shared learning across the organisation. Conclusions: We identified challenges across carer, staff and organisation levels that help explain the OSCARSS cRCT outcome. Ensuring training is translated into practice and ongoing organisational support would be required for full implementation of this type of intervention, with emphasis on the carer-led aspects, including supporting carer self-identification.Trial registration number: ISRCTN58414120.

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Caregiver Education and Training: Learning Preferences of Informal Caregivers of Adult Care Recipients.

Background: Oncology nurses play a key role in supporting caregivers through education and training in both inpatient and outpatient settings. This article describes the learning preferences of informal caregivers of adult care recipients. Caregiver respondents preferred multiple training methods, with most endorsing in-person instruction, online video instruction, and reading materials. AT A GLANCE: Caregivers are often underprepared for the care they provide. Oncology nurses have been known as trusted sources of information and education for patients and caregivers. Efforts should be undertaken to extend learning beyond clinical encounters and consider caregiver preferences in learning

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Beyond the Patient: A Mixed-Methods Inquiry Into Family Members’ Involvement in the Treatment of Parkinson’s Disease to Target Third-Party Disability

Purpose: Family members of people with Parkinson’s disease (PD) may experience third-party disability, manifesting as difficulty managing communication breakdowns and changed relationships influenced by communication disorders. This study examined family involvement in therapy to address third-party disability from the perspective of family members of people with PD and speech-language pathologists (SLPs). Method: A mixed-methods design was used with two phases of data collection. In Phase 1 qualitative interviews, nine family members shared their perspectives about their involvement in therapy. In Phase 2, a survey was developed from Phase 1 data to gather data from SLPs (N = 110) on their clinical practices involving family members. Results: Family members and SLPs agreed that when family were involved in therapy, it was primarily to support therapy exercises for the person with PD. Many SLPs reported providing supportive activities for family members. However, qualitative data from family members suggested that the limited involvement they had in therapy did not sufficiently meet their unique needs resulting from communication changes with the person with PD and other related challenges. Constraints influencing family member involvement included insurance billing regulations, privacy laws for patients, and family members’ availability. Conclusions: While some families and SLPs reported efforts to specifically include families and address their needs in therapy, these practices were inconsistent and, from families’ perspectives, insufficient to meet their own needs. Future research should consider family-centered approaches that involve family members in speech-language therapy to enhance their daily lives, along with persons with PD.

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Being 'alone' striving for belonging and adaption in a new reality – The experiences of spouse carers of persons with dementia

Background and aim: Spouse carers of a person with dementia report feeling lonely and trapped in their role, lacking support and having no time to take care of their own health. In Sweden, the support available for family carers is not specialised to meet the needs of spouse carers of people with dementia. The aim of the study described in this paper was to explore spouse carers' experiences of caring for a partner with dementia, their everyday life as a couple and their support needs. Methods: Nine spouse carers of a partner with dementia living at home were recruited through a memory clinic and a dementia organisation. Semi-structured interviews were conducted with the participants, focusing on their experiences of providing care, their support needs in relation to their caring situation, their personal well-being and their marital relationship. The interviews were transcribed and underwent qualitative content analysis. Results: The analysis resulted in one overall theme Being 'alone' striving for belonging and adaption in a new reality, synthesized from four sub-themes: (1) Being in an unknown country ; (2) Longing for a place for me and us ; (3) Being a carer first and a person second ; and (4) Being alone in a relationship. Conclusions: The training of care professionals regarding the unique needs of spouse carers of people with dementia needs improvement, with education, in particular, focusing on their need to be considered as a person separate from being a carer and on the significance of the couple's relationship for their mutual well-being.

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Barriers and facilitators for shared decision making in older patients with multiple chronic conditions: a systematic review

Background: The aim of this study was to describe barriers and facilitators for shared decision making (SDM) as experienced by older patients with multiple chronic conditions (MCCs), informal caregivers and health professionals. Methods: A structured literature search was conducted with 5 databases. Two reviewers independently assessed studies for eligibility and performed a quality assessment. The results from the included studies were summarized using a predefined taxonomy. Results: Our search yielded 3838 articles. Twenty-eight studies, listing 149 perceived barriers and 67 perceived facilitators for SDM, were included. Due to poor health and cognitive and/or physical impairments, older patients with MCCs participate less in SDM. Poor interpersonal skills of health professionals are perceived as hampering SDM, as do organizational barriers, such as pressure for time and high turnover of patients. However, among older patients with MCCs, SDM could be facilitated when patients share information about personal values, priorities and preferences, as well as information about quality of life and functional status. Informal caregivers may facilitate SDM by assisting patients with decision support, although informal caregivers can also complicate the SDM process, for example, when they have different views on treatment or the patient’s capability to be involved. Coordination of care when multiple health professionals are involved is perceived as important. Conclusions: Although poor health is perceived as a barrier to participate in SDM, the personal experience of living with MCCs is considered valuable input in SDM. An explicit invitation to participate in SDM is important to older adults. Health professionals need a supporting organizational context and good communication skills to devise an individualized approach for patient care.

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Activating Patients and Families to Improve Palliative Care: The Waiting Room Revolution

We need to support and educate palliative care specialists and generalist providers, especially family physicians, on how to integrate an early palliative care approach into care for those with a serious illness. However, there are very few care providers compared to the number of patients and caregivers in society. To increase access to palliative care at a population level, we need a waiting room revolution, one where patients and families shift from being passive to being active in shaping their experience with serious illness. A co-design approach with patients and families can help overcome barriers to accessing palliative care and improve the overall experience.

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Sharing is caring: The potential of the sharing economy to support aging in place

This article explores innovative applications of sharing economy services that have the potential to support a population aging in place, especially the "oldest old," aged 85 and older, and their caregivers. A mixed-methods study conducted by the MIT AgeLab examined perceptions of and experiences with sharing economy services, ultimately finding opportunities and barriers to use. Thus, although sharing economy services have potential to support aging in place, to do so successfully will require reconstructing how older adults, family caregivers, aging service professionals, gerontology educators, and gerontology students conceptualize and deliver care to an aging population. We suggest examples for gerontology educators to integrate into their classrooms to further cultivate an appreciation among students of multiple approaches to intervention, including those that leverage sharing economy and technology-enabled platforms to support older adults and their caregivers. 

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Promoting family inclusive practice in home treatment teams

Purpose Families play an instrumental role in helping relatives experiencing mental health issues to stay well. In the context of wider initiatives promoting family and carer needs, this study aims to evaluate the feasibility, acceptability and potential benefits of bespoke training to develop clinicians’ skills in working with families in crisis. Design/methodology/approach The study was an uncontrolled evaluation of a one-day workshop for home treatment team staff using pre- and post-questionnaires. Findings In total, 83 staff members participated. Overall, there was a strong agreement for the involvement of families, which increased marginally after training. There were significant changes in views about talking to family members without service user consent (p = 0.001) and keeping them informed of their relative’s well-being (p = 0.02). Qualitative feedback indicated that participants enjoyed the interactive elements, particularly role-playing. Training provided an opportunity to practice skills, share knowledge and facilitate the integration of family work into their professional role. Research limitations/implications Confident support for families contributes to effective mediation of crisis and continuation of care; factors important in reducing admission rates and protecting interpersonal relationships. Overall, the consistency of responses obtained from participants suggests that this workshop offers a helpful introduction to a family approach at times of a mental health crisis. Originality/value This pilot evaluation suggests this new one-day workshop, is a feasible and acceptable training program, which is beneficial in developing clinicians’ skills in working with families in a crisis.

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Health-care Workforce Training to Effectively Support Family Caregivers of Seniors in Care

Introduction Family caregivers (FCGs) play an integral, yet often invisible, role in the Canadian health-care system. As the population ages, their presence will become even more essential as they help balance demands on the system and enable communitydwelling seniors to remain so for as long as possible. To preserve their own well-being and capacity to provide ongoing care, FCGs require support to the meet the challenges of their daily caregiving responsibilities. Supporting FCGs results in better care provision to community-dwelling seniors receiving health-care services, as well as enhancing the quality of life for FCGs. Although FCGs rely upon health-care professionals (HCPs) to provide them with support and services, there is a paucity of research pertaining to the type of health workforce training (HWFT) that HCPs should receive to address FCG needs. Programs that train HCPs to engage with, empower, and support FCGs are required. Objective To describe and discuss key findings of a caregiver symposium focused on determining components of HWFT that might better enable HCPs to support FCGs. Methods A one-day symposium was held on February 22, 2018 in Edmonton, Alberta, to gather the perspectives of FCGs, HCPs, and stakeholders. Attendees participated in a series of working groups to discuss barriers, facilitators, and recommendations related to HWFT. Proceedings and working group discussions were transcribed, and a qualitative thematic analysis was conducted to identify key themes. Results Participants identified the following topic areas as being essential to training HCPs in the provision of support for FCGs: understanding the FCG role, communicating with FCGs, partnering with FCGs, fostering FCG resilience, navigating healthcare systems and accessing resources, and enhancing the culture and context of care. Conclusions FCGs require more support than is currently being provided by HCPs. Training programs need to specifically address topics identified by participants. These findings will be used to develop HWFT for HCPs.

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Comparison of the Effect of Nurses' Education on Stress, Anxiety and Depression of Family Caregivers of Patients Hospitalized with Schizophrenia Disorder

Background of the Study: The present study aimed to determine the effectiveness of family education on depression, anxiety, and stress of family caregivers of the patients with schizophrenic disorders hospitalized in Zahedan Psychiatric Hospital. Methods: The present study was a randomized clinical trial; it evaluated the effect of a four-week psychological training program on 100 family caregivers of the patients with schizophrenic disorders hospitalized in Zahedan Psychiatric Hospital. Depression, anxiety, and stress of caregivers were determined using DASS, version 21, questionnaire. Results: Based on the analysis, the effect of education was only observed in the nurses' group, and the level of anxiety, stress, and depression decreased significantly. Having compared between the nurse and control group, the anxiety level in this group decreased significantly after the training program, and the two factors of stress and depression decreased considerably and tended to be significant. Results: In summary, the present study has shown that nursing education had a significant impact on anxiety, stress and depression factors in the patients' families; this can be employed as a new approach to improve schizophrenia patients and their families.

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Where are the family caregivers? Finding family caregiver-related content in foundational nursing documents

Informal or family caregivers are a substantial component of the U.S. health care system and are essential for addressing the needs of a growing number of U.S. citizens who are aging, managing chronic or disabling conditions, or facing life-limiting illness. The purpose of this study was to examine the representation of family caregiving in a set of foundational documents that shape nursing education, practice standard, and related policy. Electronic copies of these "canonical" documents were systematically mapped for the appearance of language, terms, and concepts related to family caregiving. Additionally, relevant passages of caregiving-related text were coded for content, phrasing, and meaning. Few meaningful references were found, exposing how the nursing profession may also be perpetuating the role of the family caregiver as unsupported and invisible. When present in the documents, family caregivers were generally situated as background or context for patient care, often as objects and less frequently as agents with influence. These findings are considered within the context of the emerging caregiving public health crisis and family caregiver health outcomes, family caregiver integration into the health care team, nursing education and practice standards, nursing leadership and workforce development, and nursing's policy advocacy role.

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Confessions of a Reluctant Caregiver Palliative Educational Program: Using Readers' Theater to Teach End-of-Life Communication in Undergraduate Medical Education

End-of-life care can be stressful for patients, caregivers, and providers. Caregivers often experience high levels of burden from caregiving duties such as performing medical tasks, communicating with providers, and making decisions. Similarly, many physicians feel unprepared to provide end-of-life care or communicate with patients and families about sensitive issues associated with death and dying. Physicians often attribute their lack of preparation to inadequate training in medical school. Previous research suggests that drama-based learning opportunities are valuable supplements to existing end-of-life curricula. The current study evaluates the success of the Confessions of a Reluctant Caregiver Palliative Educational Program - a drama-based educational program that depicts patient and caregiver experiences. A total of 477 osteopathic medical students participated in the program, which includes viewing a play, engaging in a facilitated post-performance talkback session, and completing an evaluation survey. The results suggest the program is a valuable learning experience that is positively associated with important facets of experiential learning using narratives such as perceived realism, increased reflection, strong emotions, and increased comfort with difficult behaviors. The program offers a safe environment for medical students to identify, understand, and process the sensitive and complex issues associated with end-of-life care. Moreover, the play offers insight into the often-overlooked experiences of family caregivers who are at risk of experiencing high caregiver burden while managing health-related communication and decision-making.

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Caring for Family Caregivers: a Pilot Test of an Online COMFORT™ SM Communication Training Module for Undergraduate Nursing Students

Family caregivers who provide care and support to cancer patients experience distress, burden, and decreased quality of life as a result of caregiving. Caregivers often turn to nurses for support; however, there is little training available for nurses on how to care for the family caregiver. Undergraduate nursing students have a high need to learn about engaging caregivers in care, but little content is presented to fulfill that need. Derived from the COMFORT™ SM communication curriculum, we developed a 1-h online educational module specifically addressing communication with family caregivers of cancer patients. Undergraduate nursing students (n = 128) from two accredited nursing programs completed a survey at the beginning and end of the module, in addition to answering unfolding response opportunities within the module. There was a significant increase in communication knowledge, attitude, and behaviors (p < .000) in post-test responses for students across all years of study. Knowledge based on responses to case study scenarios was more than 75% correct. Student open-ended responses to case-based scenarios featured in the module revealed student mastery and ability to apply module content (range, 40-56% across four scenarios). This online COMFORT™ SM communication training module is an innovative online cancer education tool for teaching about communication with family caregivers. This study finds the module effective for teaching undergraduate nursing students about communication with family and shows promise in interprofessional curricula as well.

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Educating the next generation of family caregivers through the use of dynamic case studies

Between 2008 and 2016, students in an Introduction to Gerontology course were required to complete a dynamic case study project simulating caregiving arrangement decision making. Students were divided into groups representing typical multigenerational families and were required to determine how to develop caregiving arrangements to respond to an older family member’ s changing levels of need. The assignment concluded with students writing a final paper summarizing what they learned. This study examined the themes emerging from student group case study papers to gain an understanding of the challenges students face in understanding the dynamics of making family-based caregiving decisions. This is of particular importance as many students were seeking careers in human services and would be assisting clients in such decision-making processes, as well as involvement in decision making for their own family members. Themes that emerged from group papers and the implications related to gerontology education and policy are discussed. 

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Co‐production for service improvement: Developing a training programme for mental health professionals to enhance medication adherence in Black, Asian and Minority Ethnic Service Users

AimTo co‐produce consensus on the key issues important in educating mental health‐care professionals to optimize mental health medication adherence in Black, Asian and Minority Ethnic (BAME) groups. Objectives To identify perceptions of factors enabling or disabling medication adherence. To achieve consensus on content and delivery of an educational intervention for mental health‐care professionals. Methods Data were collected from 2016 to 2018. Using individual interviews and a consensus workshop with carers and service users (SUs treated under the 1983 Mental Health Act 1983/revised 2007 for England and Wales), the experience of taking prescribed mental health medication and perspectives on adherence were explored. Data were analysed using 2‐stage qualitative coding via the software tool NVivo version 11 to analyse transcribed data and to produce the main explanatory categories. Results SU and carer participants' perspectives substantially altered the original research design. The need to educate students rather than trained professionals was emphasized, and they suggested that educational content should be packaged in a contemporary manner (a virtual reality experience). Findings indicated that education should focus upon understanding the impact of taking prescribed antipsychotic medication on both SUs and carers. Discussion The importance of effective communication between health professionals, SUs and carers and a willingness to learn about and appreciate how BAME culture influences perception of mental illness and mental well‐being were highlighted. Conclusion In working co‐productively, researchers need to be flexible and adaptable to change.

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Supporting family carers in home-based end-of-life care: using participatory action research to develop a training programme for support workers and volunteers

Background: Family carers are crucial in enabling dying people to stay at home, but are often not prepared for their caring role, receiving little support from formal health and social care services. It is increasingly likely that any help or support family carers receive will be provided by a third sector organisation on either a voluntary basis or by untrained carer support workers.; Objectives: To produce a training programme designed to equip carer support workers and volunteers with the basic skills and knowledge needed to support family carers.; Process Of Development: Participatory action research, a collaborative form of working in which those who are affected by an issue take a lead role in the research, was used. Bereaved carers acting as research partners, support workers and representatives of third sector organisations took an active part in designing, developing, piloting and refining the programme in a number of interlinked stages. During development, the programme was piloted on four occasions and evaluated by 36 trainees and 3 trainers.; Final Training Programme: The outcome of the project is an innovative, 1-day training programme, offering an introduction to supporting family carers who are looking after someone approaching the end of life. The use of participatory action research methods enabled the development of a programme that addresses support needs identified by bereaved carers and training needs identified by carer support workers.The finished programme includes all the materials necessary to run a training day for support workers and volunteers: facilitator's notes, trainee workbook, slides, promotional poster and pre-course reading for trainees. Knowledge of issues involved in end-of-life and palliative care is not required, although some experience in delivering training is advisable.; Conclusion: The programme evaluated well during development, but further research is required to examine the transfer of learning into the workplace.

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Are We Ready for the CARE Act? Family Caregiving Education for Health Care Providers

The CARE Act, law in 40 states and territories in the United States, requires hospitals to identify and include family caregivers during admission and in preparation for discharge. Although the number of family caregivers has been steadily increasing, health care providers are ill-prepared to address their needs, and caregiving remains a neglected topic in health care providers' education. A market analysis was performed to explore the availability of and interest in interprofessional courses and programs focused on preparing health professionals to support family caregivers. Although nurses and chief nursing officers agreed on the importance of supporting caregivers, they were less likely to endorse formal educational preparation for this complex role. The current study elucidates a gap between what caregivers report they need and the preparation of health care professionals to advance family-centered approaches to care.

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Advancing the knowledge, skills and attitudes of mental health nurses working with families and caregivers: A critical review of the literature

Involving and supporting the family members and caregivers of people with mental illness is essential to high-quality mental health services. However, literature suggests that there is a lack of engagement between family members and mental health nurses (MHNs). Lack of knowledge among MHNs is often cited as one of the main reasons for this lack of engagement. The aim of this review was to explore the knowledge, skills and attitudes that are required by MHNs to enable to them to work more effectively with families affected by mental illness. A literature based critical review was used to access and review 35 papers in order to extract concepts that could inform the design of eLearning materials to assist MHNs advance their knowledge in this area. Two overarching themes were identified; 'Mental health problems and the family' and 'Working with the family'. From these themes, the knowledge, skills and attitudes required to work more effectively with families are described. The findings from this review provide a descriptive account of the knowledge skills and attitudes that are required for effective family work. In addition, the review provides an empirical foundation for education programmes in the area. Highlights • Mental health nurses often lack the knowledge and skills to support families. • Well-designed education programmes increase knowledge, reduce stress and burden. • Education programmes need to prepare mental health nurses more effectively with families.

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Family caregivers: Important but often poorly understood

An editorial is presented on the increase importance of family caregivers to improve healthcare outcomes. It highlights the health benefits of caregiving to reduce physical, emotional and financial strains particularly for individuals with chronic illness. It also cites the influence of several factors to the increase caregiver engagement of the nurses including health policy, practice and nursing education.

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Evaluation of a co-delivered training package for community mental health professionals on service user- and carer-involved care planning

Background There is limited evidence for the acceptability of training for mental health professionals on service user- and carer-involved care planning. Aim To investigate the acceptability of a co-delivered, two-day training intervention on service user- and carer-involved care planning. Methods Community mental health professionals were invited to complete the Training Acceptability Rating Scale post-training. Responses to the quantitative items were summarized using descriptive statistics (Miles, ), and qualitative responses were coded using content analysis (Weber, ). Results Of 350 trainees, 310 completed the questionnaire. The trainees rated the training favourably (median overall TARS scores = 56/63; median 'acceptability' score = 34/36; median 'perceived impact' score = 22/27). There were six qualitative themes: the value of the co-production model; time to reflect on practice; delivery preferences; comprehensiveness of content; need to consider organizational context; and emotional response. Discussion The training was found to be acceptable and comprehensive with participants valuing the co-production model. Individual differences were apparent in terms of delivery preferences and emotional reactions. There may be a need to further address the organizational context of care planning in future training. Implications for practice Mental health nurses should use co-production models of continuing professional development training that involve service users and carers as co-facilitators.

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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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Oncology Nurses' Knowledge, Confidence, and Practice in Addressing Caregiver Strain and Burden

Objectives: To describe nurses' practices, confidence, and knowledge of evidence-based interventions for cancer caregiver strain and burden and to identify factors that contribute to these aspects. ; Sample & Setting: 2,055 Oncology Nursing Society members completed an emailed survey.; Methods & Variables: Pooled analysis of survey results. Variables included the baseline nursing assessment, intervention, confidence, knowledge, strategies used, and barriers encountered. ; Results: Nurses tend to overestimate the strength of evidence for interventions not shown to be effective and have moderate confidence in assessing and intervening with caregivers. Having been an informal caregiver and having received care from an informal caregiver were associated with higher reported practice and confidence. Major strategies used were referral to social workers and others. Barriers reported were financial, caregiver emotional responses, and distance. ; Implications For Nursing: An opportunity exists to increase nurses' knowledge and confidence in assessment and intervention with caregivers. Greater use of technology may help nurses overcome some barriers to working with caregivers. Findings can be used to plan continuing education, develop clinical processes, and identify resources nurses need to address strain and burden among informal caregivers.

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Exploring the collaboration between formal and informal care from the professional perspective-A thematic synthesis

In Dutch policy and at the societal level, informal caregivers are ideally seen as essential team members when creating, together with professionals, co-ordinated support plans for the persons for whom they care. However, collaboration between professionals and informal caregivers is not always effective. This can be explained by the observation that caregivers and professionals have diverse backgrounds and frames of reference regarding providing care. This thematic synthesis sought to examine and understand how professionals experience collaboration with informal caregivers to strengthen the care triad. PubMed, Medline, PsycINFO, Embase, Cochrane/Central and CINAHL were searched systematically until May 2015, using specific key words and inclusion criteria. Twenty-two articles were used for thematic synthesis. Seven themes revealed different reflections by professionals illustrating the complex, multi-faceted and dynamic interface of professionals and informal care. Working in collaboration with informal caregivers requires professionals to adopt a different way of functioning. Specific attention should be paid to the informal caregiver, where the focus now is mainly on the client for whom they care. This is difficult to attain due to different restrictions experienced by professionals on policy and individual levels. Specific guidelines and training for the professionals are necessary in the light of the current policy changes in the Netherlands, where an increased emphasis is placed on informal care structures.

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Do nurses and other health professionals’ in elderly care have education in family nursing?

Background: Family caregivers are an important resource for providing care to elderly living at home. How nurses and other health professionals interact with family caregivers can have both a positive and a negative impact on the family caregivers’ situation. We lack knowledge of Norwegian nurses’ and other health professionals’ participation in educational programmes about family caregivers’ needs and situations. Aim: The purpose of this study was to investigate whether nurses and other health professionals working in home‐care nursing had participated in educational programmes about family caregivers. Additionally, the study aimed to determine whether participation in educational programmes was associated with awareness of family caregivers’ contributions to elder care. Methods: This is a quantitative study, and it was conducted as a cross‐sectional study. The participants were required to be educated as nurses, nursing assistants or other health professionals with relevant health education and to be working with the elderly in home‐care nursing settings. Descriptive statistics and trivariate table analysis using the Pearson Chi‐square t‐test were conducted using Statistical Package for the Social Sciences (SPSS). Result: A total of 152 nurses and health professionals in home‐care nursing in 23 municipalities have participated (in one county in Norway). The results showed that only half of the respondents had participated in educational programmes about family caregivers’ needs and situations. The study did not provide a clear answer regarding the association between participation in educational programmes and awareness of family caregivers’ contributions. Conclusions: The results indicate that nurses and other health professionals, to a small extent, have participated in educational programmes about family caregivers. Our findings indicate that participation in educational programmes may be particularly important for health professionals in leadership positions and for health professionals with vocational training.

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Australian family carer responses when a loved one receives a diagnosis of Motor Neurone Disease—“Our life has changed forever”

While the experiences of family members supporting a person with a terminal illness are well documented, less is known about the needs of carers of people with neurological diseases, in particular, Motor Neurone Disease (MND). This paper describes the qualitative data from a large Australian survey of family carers of people with MND, to ascertain their experiences of receiving the diagnosis. The aim of the study was to describe the experiences of family carers of people with MND in receiving the diagnosis in order to inform and improve ways in which the diagnosis is communicated. Anonymous postal surveys were sent to people with MND in Australia and their family carers respectively. The perceived ability/skills of neurologists was assessed using a five‐point scale from excellent to poor. Attributes of communication of bad news was measured by the SPIKES protocol. Each survey question invited further written responses. Eight hundred and sixty‐four questionnaires were posted to people with MND and their family carers, with assistance from MND associations. One hundred and ninety‐six family carers submitted responses, of which 171 (88%) were patient‐carer dyads. Analyses were conducted on 190 family carers. Five themes emerged from reading and re‐reading written responses: frustrations with the diagnosis; giving information; family carer observations of the neurologist; the setting; and what would have made the diagnosis easier? The delivery of the diagnosis is a pivotal event in the MND trajectory. Satisfaction for patients and their family carers is related to the neurologists showing empathy and responding appropriately to their emotions, exhibiting knowledge and providing longer consultations. Neurologists may benefit from education and training in communication skills to adequately respond to patients’ and families’ emotions and development of best practice protocols. 

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Working with Families Affected by Mental Distress: Stakeholders' Perceptions of Mental Health Nurses Educational Needs

Family and informal caregivers provide a substantial amount of care and support to people who experience mental health problems. The aim of this study was to explore mental health nurses', students' and service users' perceptions of the knowledge, skills and attitudes that are required by mental health nurses to work with families and carers using a qualitative methodology. Three themes emerged from the data: Knowledge of the family and how mental distress affects the family; working with the family – support and education; and valuing the role of the family. The three themes demonstrate the complexity of preparing mental health nurses to work with families and carers, and the article offers recommendations about how this might be achieved. 

Re-visioning social work education: an independent review

Norman Lamb, Minister of State for Care and Support at the Department of Health invited the Chair of Skills for Care to undertake this Independent Review, in the context of the changes to social work practice brought about by the Social Work Task Force and Social Work Reform Board, and their own recommendations for social work education. The review is based on evidence invited from as wide a field as possible, from the UK and internationally, of all those who have a stake in the education of social workers, including service users and carers, employers, educationalists, social work practitioners, students and others. Professor David Croisdale-Appleby considers whether social work education is ideally structured to best serve the changing nature of the profession. 

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An exploration of international innovation in service user involvement across three countries

This film is from a project which examines social work from the perspective of service users and carers across three countries, Northern Ireland, Slovenia and Spain. Social work students from Queen’s University, Belfast, Northern Ireland, the University of Ljubljana, Slovenia and the University of Alicante, Spain interviewed service users and carers on film using seven questions developed to examine key areas of social work skills, knowledge and values. The service users and carers were all already working across the three universities and had prior experience of involvement in social work education. Each country developed its own film and the three films were then edited together to produce a film where all of the service users and carers can be seen responding to the seven questions. The authors believe the films will help student social workers to understand social work knowledge, skills and values in an international context.

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The recognition of and response to dementia in the community: lessons for professional development

Adult learning approaches require professionals to identify their learning needs. Learning about dementia syndromes is a complex task because of the insidious onset and variable course of the disease processes, the inexorability of cognitive and functional loss, and the emotional impact of neurodegenerative disorders on those experiencing them and on their family and professional carers. This report describes the ways in which learning tasks were understood and articulated by 774 community-based professionals from different disciplines, working in nominal groups in 24 settings across the United Kingdom, and explores how these groups set about identifying their learning needs. These groups focused on being insufficiently skilled to carry out educational functions, on solving problems of limited resources and inflexible systems, and on carers rather than on people with dementia. The groups’ solution hinged on multidisciplinary learning being the best route to achieving system change, but such an approach to learning was dealt with uncritically. Three themes received scant attention: the impact of practitioners’ own emotional responses to dementia on their clinical or practical skills; the educational potential of voluntary organizations; and the value of learning from the person with dementia, as much as from their carers. Professional development should therefore widen the debate about recognition of dementia to improvement of timely responses. It should concentrate on developing capacities not only around diagnosis, but also around communication and support.

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Social work education case study: Kingston University and St George's University London

Service users, carers and academics describe participation in the social work degree at Kingston University and St George's University London. It looks at the different ways that users and carers are involved in the course, including teaching, role-playing activities, marking students' work and the selection process for students applying to on the course. It also looks at the importance of the university providing appropriate training and support, the benefits students get from contact with users and carers and what users and carers gain from the experience. The film will be of interest to social worker educators, students on social work courses, people working more broadly in co-production/participation and service users and carers.

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The fount of all knowledge: training required to involve service users and carers in health and social care education and training

A modified Delphi study was carried out in order to obtain consensus regarding the content of a university training course to involve service users and carers at all stages of the health and social care educational process within a higher education environment. Telephone interviews were carried out with service users and carers, educationalists and leaders in the field of service user and carer involvement to generate curriculum ideas. A questionnaire was developed from their responses and sent to a purposive sample of 65 people (24 service users and carers, 28 health and social care educationalists and 13 leaders in the field of service user and carer involvement). Fifty‐five statements were generated with consensus being reached on 46 (84%) statements. Mismatches between service users and carers, educationalists and leaders in the field were explored. Key themes to be included in the curriculum were identified. This paper demonstrates that the best training is not imposed upon service users and carers by academics or others who think they know best; rather, that service users and carers themselves can play a leading role in identifying their training needs and devising strategies to ensure these needs are effectively met.

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User involvement in social work education: Macedonian perspective

Involving service users and carers in the education and training of social workers is higher on the agenda in developed countries than ever before. Higher education institutions that run these programmes are required to involve service users and carers at all levels of the design and delivery of the programmes. The experiences of user involvement in social work education in the countries of transition, such as Macedonia, are however lacking. This article discusses the modalities, principles and benefits of user involvement in social work education based on the Anglo-Saxon experiences and make a reference to their applicability within the Macedonian context where relevant. The author focuses initially on the modalities in which user involvement may take place: teaching and learning, practice assignments, curricula development, student’s assessments, planning management and evaluation of courses etc. Further, it briefly explores core principles, as well as issues related to participation planning and payment.

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User and carer involvement in social work education - a university case study: manipulation or citizen control?

This paper provides an account of one university's experience of involving service users and carers in the delivery of the new undergraduate and postgraduate social work degrees. It poses the question as to whether user and carer involvement in social work education can be viewed as a means of promoting citizen participation or whether it is a case of manipulating relatively powerless groups. In addressing this question, service users and carers and social work tutors describe, from their own distinct perspectives, the processes in which they were both involved.

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The caring experience: learning about community care through spending 24 hours with people who use services and family carers

This paper describes a teaching and learning initiative developed in a UK social work programme that has involved carers, service users, academic social work staff and practitioners. Post‐graduate student social workers spend 24 hours in agreed periods with family carers or people who use social work services. The paper explains the origins of this initiative, rooted in a model of service user and carer involvement established over a number of years within the social work programme at the University of Dundee, Scotland. The development of this teaching and learning method is outlined and an account is given by a family carer describing their experience of being involved in the programme. Findings from the evaluation of this first year of operation are reported.

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Effective engagement in social work education

This good practice guide is based on research conducted in 2008, and commissioned to explore the extent of service user and carer involvement in the Higher and Further Education sectors in west and southeast Scotland. Through this guide it is hoped that good practice can be shared and lessons learned. This guide is a tool to support the effective engagement of people who use services and carers in social work education. It is evidence-based and applicable to educators working in the social care field and beyond including health, early years and childcare. The purpose of the guide is to progress the involvement of people who use services and carers in all aspects of social work education by demonstrating the range of opportunities for involvement and explaining the key elements of good practice.

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Social work education case study: Bucks New University

Service users, carers and academics describe participation in the social work degree at Bucks New University. It looks at the different ways that users and carers are involved in the course, the importance of the university providing appropriate training and support, the benefits students get from contact with users and carers and what users and carers gain from the experience. The video will be of interest to social worker educators, students on social work courses, people working more broadly in co-production/participation and service users and carers.

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Issues of power in service user and carer involvement: partnership, processes and outcomes

Our experience of partnership working on a Scottish project on service user and carer involvement in social work education has been a deeply politicising one. First-hand encounters with power enacted at various sites of service user and carer involvement across national, institutional and local university levels have demonstrated to us that 'partnership working that pushes at the orthodox structures of power is difficult' (Barnes et al., 2006, p. 434). In this chapter we provide a commentary on service user and carer involvement in social services work, in social work education in particular, with a focus on the enactment of power. We explore the nature of partnership arrangements with service users and carers; examine the processes through which partnerships are navigated; and review what is known about the outcomes of such partnerships on social work knowledge and education, and ultimately on social work practice itself.

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Social work education and mental health in a changing world

This paper addresses a number of issues concerning the future prospects for social work and mental health in England and the implications of these for social work education. In particular the significance of interprofessional practice and education will be examined and these will be located within the wider context of the social work contribution to mental health services. The experience of social work in promoting the interests and involvement of service users and carers and of working within a holistic model will also be recognised. The particular value of the social work contribution to mental health in both mental health and non-mental health settings is emphasised and attention is paid to how this could be strengthened and extended in the light of the opportunities for positive and creative developments offered by the introduction of the new 3-year degree. These will include the development of shared learning with other professional groups and the need to prepare social work students for practice within a rapidly changing world.

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Building capacity for service user and carer involvement in social work education

Requirements set out for the social work degree and post‐qualifying framework specify the involvement of service users and carers on a number of levels. Research indicates that service user and carer involvement can benefit students, professionals and service users and carers themselves. To keep up with demands placed on service users and carers by higher education institutions and other social work bodies, the issue of capacity needs to be addressed. This paper describes a programme (Getting Involved) designed by Skills for Care to build capacity to participate among service users and carers new to social work education. It describes the experience of piloting the programme in Dorset by a team at Bournemouth University consisting of service users and carers and staff from the Centre for Post‐Qualifying Social Work. Getting Involved is a welcome development and the outcomes of the pilot have been extremely positive for all involved. The process of undertaking and evaluating the pilot raised issues concerning setting up programmes, project management, service users and carers as co‐researchers and sustainability. These are discussed in terms of our experience and how they link with the literature. Lessons learnt and implications for similar work in the future are highlighted.

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Evaluating the effectiveness of service user and carer involvement in post qualifying mental health social work education in Scotland : challenges and opportunities

Purpose – The purpose of this study is to evaluate the effectiveness of user and carer involvement in a new one‐year postgraduate certificate course for Mental Health Officers (MHOs) in Scotland, covering the first year of its delivery (2009‐2010).

Design/methodology/approach – This was explored in two ways: first, by assessing the level of user and carer involvement against a modified framework; and second, by measuring students' confidence in working with people with mental health issues over the duration of the course, and through interviews with students and service users and documentary analysis.

Findings – The findings indicate user and carer “influence” and “partnership” over the design and delivery of the learning, teaching and assessment strategy, but no degree of “control” over any aspect of the course. Teaching provided by users and carers was associated with marked improvement in students' confidence in engaging with and upholding the rights of users and carers in the context of the MHO role. Students reported increased awareness of the lived reality of compulsory treatment. Users reported benefits from feeling they had helped facilitate future good practice.

Research limitations/implications – The research design does not allow for causal links to be made between increases in student confidence and user and carer involvement.

Practical implications – The study identified substantial barriers to effective user and carer involvement but confirmed its potential as a positive change agent for post‐qualifying social work education.

Originality/value – This study contributes to the evidence base by demonstrating the value of service user and carer involvement in post qualifying social work education.

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Animating experience

The imperative for participation in social work education has led to consideration of the ways in which service users’ and carers’ voices can best be heard by students. At Glyndŵr University, this debate has resulted in the development of a service user and carer-led module which will introduce students to a variety of creative approaches as a way of telling narratives of experience. In preparation for the module, a pilot project was run to assess the particular benefits of using animation for this purpose. This reflective case study describes the experiences of a social work student who worked with a carer to make a short animated film. It articulates the ways in which theoretical teaching was brought to life by working intensively. It demonstrates that creative approaches can offer a constructive means of addressing the need to cater for diverse learning styles. In addition, it adds weight to the argument that service users’ and carers’ experiential knowledge should be taken as seriously as other forms of knowledge.

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Working with carers in educational settings: developing innovations in practice

Purpose – It is generally agreed that carers in mental health care play a vital role in helping people to maintain their place in the community and reducing the time clients spend in hospital or residential settings. The purpose of this paper is to develop a conceptual approach to involving carers in higher education by acknowledging their contribution to improving practice and identify the impact upon student learning in mental health and social care professions. 

Design/methodology/approach – A brief review of the policy and literature on involving carers in mental health services and education explored the historical and current influences upon practice. This was then applied to the experience of the authors when teaching nursing and social work students in a higher educational setting and evaluated as developing outcomes in carer involvement practice.

Findings – Relationships between carers and students in health and social care may be created in higher education settings that can develop supportive, informative and recovery‐focused care in practice. Creating such relationships in the higher educational setting helps students to prepare for developing relationships with carers in practice. 

Originality/value – Involving carers in education may improve outcomes in recovery for the client and carer experience and the development of professional and self awareness skills in students. Developing involvement practices in higher education begins the process early in the experience of health and social care students, providing a safe environment in which to master such skills.

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Developing carers' contributions to social work training

Including informal carers within social work training programmes is generally regarded positively. Such approval is aligned with the view that users of welfare services possess valuable, even unique perspectives relevant to professional education and training. This article identifies three models incorporating the experience of carers into social work training and draws attention to aspects of good practice. It questions whether the extension of training in this area adequately addresses the problematic positions of carers' diverse circumstances since they do not fit into simple analyses of social constructionism or oppression.

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Service user and carer involvement in role-plays to assess readiness for practice

Service user and carer involvement in social work education is now well established since its inception as a compulsory requirement in the social work curriculum in the United Kingdom in 2003. Since then, there have been many examples of how such involvement has been approached by education providers. Nevertheless, one of the key obstacles and challenges in this field continues to centre on the need to achieve non-tokenistic user involvement which cements the engagement of service users and carers at the heart of social work education. This paper describes one such initiative where service user and carer colleagues in a university in Northern Ireland have been actively involved in the assessment of first year social work students' preparation for their first period of practice learning. The paper presents the background to this initiative explaining how the project unfolded; the detailed preparations that were involved and the evidence gathered from evaluations undertaken with the students, service users and carers, and academic colleagues who were all involved. We believe that the findings from this project can contribute to the advancement of existing knowledge in the field in exploring and recommending creative methodologies for user involvement in social work education.

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Caring at a distance: learning and practice issues

Emphasis on support for informal carers focuses on those who provide, in the words of the Carers (Recognition and Services) Act 1995, 'substantial' and 'regular' care. Following research and policy, professional education has also developed interest in those who live with the people they support, such as co-resident spouses and children of all ages. This article considers those who probably do not define themselves as carers and are usually referred to as 'relatives' or 'family', living at a distance from an older relative. It explores their possible need for support as well as the form and level of their involvement in relation to care managed services. It describes key areas or events to draw out practice issues and concludes with a discussion of the extent to which care management can work with such relatives. In many ways caring at a distance forces an examination of what is meant by 'care' and who can legitimately claim this as an emotion or status. The rationale for such interest is therefore three-fold. If social workers and social work educators restrict the meaning and their definitions of carers to those who provide 'hands on' services, as part of the care package, they risk alienating relatives from the learning experience of students. In doing so they may neglect these highly valued supports of older people and may leave relatives distressed and disempowered by anxiety over their contract with social work agencies.

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Social work education case study: Anglia Ruskin University

Service users, carers and academics describe participation in the social work degree at Anglia Ruskin University. It looks at the different ways that users and carers are involved in the course, the importance of the university providing appropriate training and support, the benefits students get from contact with users and carers and what users and carers gain from the experience. The film will be of interest to social work educators, social work students, service users and carers.

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Social work education case study: Leeds University

Service users, carers and academics describe participation in the social work degree at Leeds University. It looks at the different ways that users and carers are involved in the course, including teaching, role-playing activities, marking students' work and the selection process for students applying to on the course. It also looks at the importance of the university providing appropriate training and support, the benefits students get from contact with users and carers and what users and carers gain from the experience. The film will be of interest to social worker educators, students on social work courses, people working more broadly in co-production/participation and service users and carers.

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Social work education participation: access, payment and support

This video looks at the practical arrangements that need to be made around accessibility, support and payments to ensure that users and carers can participate in social work education and be rewarded for their input. The film will be useful for social work students, lecturers, tutors, social worker educators, people working more broadly in co-production/participation and service users and carers.

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What do we know about partnership with service users and carers in social work education and how robust is the evidence base?

Partnership work with service users and carers in social work education is a policy requirement, and it is also central to the anti-oppressive and rights-based values of social work. This paper reports research findings which are drawn from an educational context, but are also relevant to the wider field of health and social care. The research team undertook a systematic knowledge review using the Evidence for Policy and Practice Information and Coordinating Centre system, which had been used in health and education, but which had not previously been used in social care and social work. This involved an extensive search of electronic databases and rigorous screening to identify studies which had sufficient relevance to be subjected to detailed analysis. The research team also undertook a practice survey of the teaching, learning and assessment of partnership in prequalifying programmes in England, Wales and Northern Ireland. This involved three stages: a document search; telephone interviews; and focus groups held with students, academic staff, and service users and carers. Throughout the research process, the interdisciplinary team was advised and supported by a stakeholder group which consisted of service users and carers, students, and employer representatives. In the second part of the paper, subsequent discussion explores key findings from the research, including the disputed nature of the concept of partnership, models of partnership work within social work education and the dearth of research on partnership outcomes. Five related questions are identified as a means of interrogating the robustness of the research process and findings. The paper concludes by arguing for work to be done to theorise partnership, and to develop effective strategies for improving the quality of partnership working in education, and health and social care practice.

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Emerging from out of the shadows? Service user and carer involvement in systematic reviews

The systematic review methodology literature refers to the importance of involving stakeholders, including service users and carers, in the research. However, compared with other aspects of the methodology, this aspect of conducting systematic reviews is underdeveloped and the practice of involvement appears highly variable. This article draws on the experience of working with service users and carers in one systematic review to review the barriers to participation and the components of effective involvement. It suggests that quality standards can be identified for service user and carer involvement in systematic reviews, which will benefit policy and practice development

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Reflections on student, service user and carer involvement in social work research

This article will reflect on the experience of undertaking a participatory action research influenced study within a module of a social work degree programme. In doing so it will touch on some of the literature associated with student, service user and carer involvement in qualifying programmes, and in particular on research and module design. It will outline the history of service user and carer involvement in respect of a specific module within a singular degree course. It will provide an overview and some findings of the study, which sought to evaluate the involvement of an inherent service user and carer group within that degree course. However, as service user and carer involvement within degree programmes has had significant attention within the wider literature, the current study seeks to present a reflexive commentary on student, service user and carer involvement in research modules and participatory action research. Whilst the research presented here should be regarded as an initial foray with acknowledged limitations, it equally highlights some perspectives that lead to an understanding of how greater levels of student, service user and carer involvement within social work research might be achieved, in particular in the context of social work qualifying programmes.

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Research into practice

Reports on a study which investigates how universities have engaged with carers and carer organisations in developing the new social work degree. The research was commissioned by the department of Health through Carers UK and City and Guilds Affinity.

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Social work education participation: user and carer participation in social work

This film details the requirements on universities teaching the social work degree to involve service user and carers in their courses. It also sets out the benefits that result from students working with service users and carers, with users and carers describing how this leads to improved practice and how students explaining the value of learning about the realities of people's lives. The film will be of interest to social worker educators, students on social work courses, people working more broadly in co-production/participation and service users and carers.

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Social work education participation: what's happening in four universities?

In this video representatives from four universities describe the ways in which service users and carers participate in social work degree courses. It looks at the benefits user and carer involvement brings to the courses and how they gain from the experience of participation. The film will be useful for  is relevant to social worker educators, social work students, people working more broadly in co-production/participation and service users and carers.

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The Meaningful Involvement of Service Users and Carers in Advanced-Level Post-Qualifying Social Work Education: A Qualitative Study

The Social Work Reform Board is undertaking an ambitious programme of reform in the UK. This includes enhancing the professional status of social work and reforming social work education. The nature and purpose of service user and carer involvement at all levels of social work education need to be considered alongside this. However, the nature of meaningful involvement of service users and carers in advanced post-qualifying education has not been clearly articulated. A qualitative study was conducted that involved twenty-nine stakeholders—service users, carers, social workers, lecturers and managers—to help understand what constitutes meaningful involvement at this level of education. We found four predominant models (consultation, partnership, political and user control) that have different implications for how service users and carers may be engaged in advanced post-qualifying social work education. Further research is required to understand the effect of these different models on outcomes for social workers and the service users and carers they work with.

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Working towards full participation: a report on how social work degree courses, which started in 2003, have begun to involve service users and carers in social work training

The introduction of the new social work degree, which had its first intake in September 2003, provided an important and exciting opportunity to make participation in social work education a reality by requiring that service users and carers be involved in all aspects of course design and delivery, including the selection and assessment of students. This is the annual quality- assurance report (AQAR) to be compiled by the General Social Care Council (GSCC). The report draws on the full range of quality-assurance  (QA) processes undertaken during the reporting year April 2004 to March 2005.

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Involving service users and carers in social work education

Context: In 2003 the Department of Health introduced a new qualification for social workers. Previously a diploma, for the first time the social work qualification became a three-year degree course, a move which reflected the difficulty and professionalism of the job. Also for the first time, universities and colleges offering the degree were required to involve service users and carers in the design and delivery of the programme.

Purpose: This guide focuses on how service users, carers and providers of social work education and training can work together on the social work degree. It covers the principles, practicalities and range of approaches to building and sustaining these partnerships.

Audience: The guide is for all those involved in the degree - from programme heads to administrators - but is especially aimed at those responsible for educating and training social workers.

The key messages of the guide apply also to developing service users’ and carers’ involvement in all types of training for social work and social care staff and in the design and delivery of services. 

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Social work education participation: hopes for the future

In this film academics, policy makers, service users and carers describe their hopes for the future development of user and carer participation in social work education in this film. This includes developing further ways for users and carers to participate in the degree and ensuring there is consistency in participation across all higher education institutions. The film will be of potential interest to social worker educators, students on social work courses, people working more broadly in co-production/participation and service users and carers.

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