Confidence In Care Research Articles

Forward with dementia: process evaluation of an Australian campaign to improve post‐diagnostic support

AbstractBackgroundPost‐diagnostic support for dementia is lacking in Australia and internationally. Across five countries, we co‐designed and delivered Forward with Dementia, a campaign to improve the communication of diagnosis and provision of post‐diagnostic support. This is a process evaluation of the Australia campaign which included social media, online advertising, webinars, a website hosting downloadable materials, newsletters and promotion through partner organisations. The campaign ran between September 2021 and June 2023 with a budget of AUD$50,000 and staff time.MethodThe Reach, Effectiveness, Adoption, Implementation, Maintenance (RE‐AIM) Framework with the addition of Appropriateness structured the evaluation. Data collected included a campaign activity log, surveys of health and social care professionals immediately after webinars (n = 81) and 3‐6 months afterwards (n = 45), interviews with eight health and social care professionals and six key stakeholders, and surveys and interviews with people with dementia (n = 24) and carers (n = 47).Result Reach: 28,460 interactions with campaign activities including engagement through the website, webinars, and social media. Appropriateness: Campaign activities and resources were described to have appropriate content, a hopeful friendly tone, user‐friendly, and trustworthy and be authoritative. >75% of professionals reported webinars were helpful to their work. Adoption: 95% of professionals planned on using the information from webinars, and 93% intended to share the website with patients. Professionals provided examples of how they had changed practice – for instance being more positive, writing a care plan, making referrals, and sharing Forward with Dementia resources. Effectiveness: Professionals described being more confident in managing dementia. Some people with dementia and carers gave examples of how the campaign decreased self‐stigma, increased carer confidence, and led to actions which increased wellbeing. Maintenance: The majority of professionals had made ongoing changes to their post‐diagnostic support practices, some organisations were routinely using Forward with Dementia resources, which are also included in Department of Health and Dementia Australia websites.ConclusionThis relative short and economical campaign had broad reach and appropriate materials that produced sustained changes to post‐diagnostic support provided by health and social care professionals and organisations. Qualitative data suggests improved outcomes for people with dementia and carers.

Improving Confidence in Dementia Care by Helping Care Staff Articulate Skills They Already Possess: The Value of the Communication and Interaction Training (CAIT) Programme

This article discusses the findings from a training programme called ‘Communication and Interaction Training’ (CAIT). CAIT was designed to improve the confidence of carers in their use of communication skills with people living with dementia, particularly when managing behavioural agitation. This pre/post assessment study employed a mixed design, and showed positive effects in terms of quantitative and qualitative features. The participants were mainly from a specialist team who were experienced in managing episodes of agitation in care home settings. Twenty-three staff were assessed on the Confidence in Dementia Scale (CODE), which is a measure for assessing carers’ confidence in communicating with people living with dementia. The findings showed increased levels of confidence in communicating and interacting with people with dementia following the training. The qualitative findings showed improvements in participants’ abilities to articulate their communication strategies (i.e. higher degrees of specificity in their communication skills), indicative of improved dementia ‘literacy’ regarding their interventions. As a consequence of such improvements, it is suggested that greater confidence and literacy would lead to the delivery of better care due to enhanced self-awareness of good practices, and enhanced communication skills both within the staff group and between staff and residents.

The Acceptability and Usefulness of Positive Behaviour Support Education for Family Carers of People With Frontotemporal Dementia: A Pilot Study.

This pilot study investigated the acceptability and usefulness of 4 weekly Positive Behaviour Support (PBS) education sessions (delivered face-to-face and online) for family carers of individuals diagnosed with behavioural-variant frontotemporal dementia (bvFTD). These sessions were adapted from the Family-directed Approach to Brain injury (FAB)-PBS program to the FTD population. A pre-test post-test mixed-methods design was utilized. Primary outcome measures included a Carer Confidence questionnaire and post-intervention Feedback Questionnaire. Assessments were conducted prior to the 4-week education program, immediately following the final session and a 3 months follow-up. Ten family carers completed the 4 PBS education sessions and indicated that the program was helpful in providing behaviour support. No significant changes in confidence ratings were found before and following the education sessions. A majority of participants, however, reported positive changes to their approach in providing behaviour support, with key themes including 'recognising the function of behaviour', 'changing their own behaviour' and 'promoting a calmer approach'. The FAB-PBS education sessions demonstrate to be an acceptable approach to increasing the capability of family carers in providing behaviour support to individuals with FTD, which will need to be confirmed in a larger feasibility study.

What are the challenges when recruiting to a trial in children\u2019s social care? A qualitative evaluation of a trial of foster carer training

BackgroundRandomised controlled trials (RCTs) are comparatively rare in UK social work, but can offer distinct advantages. Confidence in Care (CiC) is an RCT with embedded process evaluation evaluating Fostering Changes (FC), a 12-week training programme for foster and kinship carers to increase skills and coping strategies. In order to mitigate challenges in participant recruitment, an engagement strategy was designed to maximise this. Our aim is to explore experiences of key study stakeholders towards trial recruitment and identify broader messages about recruitment to social care trials.MethodsThree focus groups were conducted, two with field-based recruiting staff (n = 7) and one with carers who attended the FC programme (n = 8). Five interviews were conducted with trainers who delivered FC, eight with foster carers who attended the programme, 18 with Foster Carers who elected not to take part in the programme, and 12 with social workers from participating trial sites. In addition, an away day for FC trainers was observed and discussions related to recruitment were noted. Transcribed audio-recorded data were inductively coded, double-coded by a second researcher, and thematically analysed.ResultsSix themes were identified. The first addressed pragmatic aspects of the intervention affecting recruitment (e.g. committing to a 12-week programme). A second focussed on accuracy of communication about the trial between provider agencies and carers. A third concerned the ability of recruiting staff to contact carers, a particular challenge in group-based recruitment. A fourth addressed trial methods and their communication (e.g. relationship between trial team and recruiting staff). A fifth explored lack of differentiation by carers between the roles of the various professionals (e.g. FC facilitators and provider agencies). The sixth addressed perceived differences between recruitment into social care and health studies.ConclusionsRecruitment challenges in this social care setting were similar to those in healthcare. Some (e.g. gatekeeping by professional staff) may be rooted in randomisation anxiety, or unfamiliarity with research methods. Researchers more familiar with healthcare recruitment were however encouraged about the experience of working in this care setting. The original recruitment strategy and adaptations form the basis of further recommendations for research practice.Trial registrationISRCTN19090228. Registered on 11 January 2017.

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.

Improving the experience of patients who receive home enteral tube feeding.

Home enteral tube feeding is an increasingly common intervention for patients who are unable to meet their full nutritional requirements. These patients require specialist support to enable them to live as normal a life as possible at home. An integrated acute and community nutrition service developed a new role of community nutrition nurse (CNN) in 2016, with the goal of reducing the number of unplanned hospital attendances relating to enteral tube feeding issues. Following the introduction of the CNN and related troubleshooting interventions, there was a 93% reduction in unplanned hospital admissions between 2017 and 2018. The role has been found to have many benefits, such as improved patient experience, care closer to the patient's home and empowerment of patients, their relatives and carers. It has also helped to increased patient and carer confidence to self-care and has reduced costs within the acute hospital system relating to unplanned hospital attendances and admissions.

Caring efficacy: nurses' perceptions and relationships with work-related factors.

Background and aim of the work: Caring nursing practice is central aspect of quality of services. It is important to assess nurses’ caring experience in terms of perceived caring efficacy to make them aware of their outcomes and improve their strategies. The aims of the study was to analyze: (1) the caring efficacy level, (2) differences between the caring efficacy levels concerning positive and negative work attitudes, (3) individual and organizational predictors of perceived caring efficacy. Methods: 200 nurses were recruited from a University Hospital in Southern Italy. A self-reported questionnaire was administered. T-test was performed to analyze differences between caring efficacy levels concerning outcomes variables. Regression analysis was carried out to examine how some work factors were related to perceived caring efficacy. Results: Participants referred high confidence to care (CC) for 55%, and low doubts and concerns (DC) for 72.9%. Nurses who had low DC had lower emotional exhaustion than nurses with moderate DC. Nurses with low DC had higher job satisfaction than nurses with high DC. Regarding CC levels, there were no differences between mean values for both attitudes at work. The emotional dissonance significantly predicted DC and CC. The supervisor support had a negative link with emotional dissonance, which in turn was negatively related to CC. Conclusions: Education and training should be addressed to reduce doubts and concerns to care and improve the ability to manage emotions. A work environment that value caring and give support in managing emotions can reduce emotional dissonance and improve caring self-efficacy. (www.actabiomedica.it)

Impact of the Macmillan specialist Care at Home service: a mixed methods evaluation across six sites

BackgroundThe Midhurst Macmillan Specialist Palliative Care at Home Service was founded in 2006 to improve community-based palliative care provision. Principal components include; early referral; home-based clinical interventions; close partnership working; and flexible teamwork. Following a successful introduction, the model was implemented in six further sites across England. This article reports a mixed methods evaluation of the implementation across these ‘Innovation Centres’. The evaluation aimed to assess the process and impact on staff, patients and carers of providing Macmillan Specialist Care at Home services across the six sites.MethodsThe study was set within a Realist Evaluation framework and used a longitudinal, mixed methods research design. Data collection over 15 months (2014–2016) included: Quantitative outcome measures - Palliative Performance Scale [PPS] and Palliative Prognostic Index [PPI] (n = 2711); Integrated Palliative Outcome Scales [IPOS] (n = 1157); Carers Support Needs Assessment Tool [CSNAT] (n = 241); Views of Informal Carers –Evaluation of Services [VOICES-SF] (n = 102); a custom-designed Service Data Tool [SDT] that gathered prospective data from each site (n = 88). Qualitative data methods included: focus groups with project team and staff (n = 32 groups with n = 190 participants), and, volunteers (n = 6 groups with n = 32 participants). Quantitative data were analysed using SPPS Vs. 21 and qualitative data was examined via thematic analysis.ResultsComparison of findings across the six sites revealed the impact of their unique configurations on outcomes, compounded by variations in stage and mode of implementation. PPS, PPI and IPOS data revealed disparity in early referral criteria, complicated by contrasting interpretations of palliative care. The qualitative analysis, CSNAT and VOICES-SF data confirmed the value of the Macmillan model of care but uptake of specialist home-based clinical interventions was limited. The Macmillan brand engendered patient and carer confidence, bringing added value to existing services. Significant findings included better co-ordination of palliative care through project management and a single referral point and multi-disciplinary teamwork including leadership from consultants in palliative medicine, the role of health care assistants in rapid referral, and volunteer support.ConclusionsMacmillan Specialist Care at Home increases patient choice about place of death and enhances the quality of end of life experience. Clarification of key components is advocated to aid consistency of implementation across different sites and support future evaluative work.

Hospital discharge processes involving older adults living with dementia: An integrated literature review.

To identify barriers and facilitators to engagement of people with dementia and family carers in planning for discharge from hospital. Hospital discharge can be particularly challenging for older people with dementia. To assist in the development of bespoke discharge processes that address the unique needs of older people with dementia, an integrated review of the literature was undertaken. A four-stage integrative review framework guided the review. Three search strategies were employed: a computerised database search, a hand search of reference lists and forward citation searching. Paired members of the research team reviewed eligible full-text papers. The methodological quality of each paper was assessed using the Mixed-Methods Assessment Tool, followed by data extraction and completion of summary tables. Within and across study analysis and synthesis of study findings was undertaken using thematic synthesis. Fifteen papers were included in the review. Most identified barriers to collaborative discharge processes related to distributed responsibility for discharge, risk averse approaches to discharge, limited family carer confidence, and limited validation of assumptions about family competency to manage at home. Facilitators included supported clinician and family carer engagement, and maintaining independence for activities of daily living. Reflective analysis of discharge decisions, focused on risk and possible risk aversion, can assist teams to evaluate the quality of their discharge decisions. The use of formal communication strategies such as a patient/family-held journal of the hospital experience and a structured family meeting early in the hospital admission can enhance family engagement in discharge planning. Prevention of functional and cognitive decline is emerging as critical to improving hospital discharge outcomes.

Living with an indwelling urethral catheter in a community setting: Exploring triggers for unscheduled community nurse “out‐of‐hours” visits

To explore the experiences of community patients living with a urethral catheter and those caring for them. Living at home with an indwelling urethral catheter often results in consequences that create a double-edged burden: first, on patients and their relative carers and second, in terms of unscheduled community nurse service "out-of-hours" provision. One-to-one interviews were conducted with patients living at home, their relative carers, qualified community nurses, augmented home carers and healthcare assistant. Quantitative data in relation to frequency, duration and reason for visits were extracted from the community nurse "out-of-hours" service database. Quantitative data showed that 20% of all community nurses unscheduled "out-of-hours" visits were triggered by an indwelling urethral catheter consequence. Qualitative data revealed that health and social care staff felt knowledgeable and skilled in urethral catheter management. Conversely, patients and relative carers felt poorly equipped to manage the situation when something went wrong. The majority of patients described the catheter as being a debilitating source of anxiety and pain that reduced their quality of life. Urethral catheter complications are frequent and impact seriously on quality of life with informal carers also affected. Community nurses experienced frequent unscheduled visits. Patients often feel isolated as well as lacking in knowledge, skills and information on catheter management. Having better urethral catheter information resources could increase patient and relative carer confidence, encourage self-care and problem solving, as well as facilitate meaningful consistent dialogue between patients and those who provide them with help and support. Better patient information resources regarding urethral catheter management have potential to improve patient and relative carer quality of life and reduce service provision burden.

Clinicians' Views of Educational Interventions for Carers of Patients With Breathlessness Due to Advanced Disease: Findings From an Online Survey

ContextCarers' needs in advanced disease, and specifically in relation to breathlessness, are well evidenced. Publications on educational interventions for carers of patients with advanced disease that focus on symptoms are scarce and absent for breathlessness. ObjectivesTo establish current education provided by clinicians for carers of patients with breathlessness in advanced disease, views about educating carers about breathlessness, and relevant outcomes for a future randomized controlled trial of an educational intervention for carers. MethodsAn online survey was completed by 365 clinicians: medical, nursing, and allied health professionals from primary care, hospital, and hospice. Descriptive statistics summarized respondent characteristics and survey responses, and the Chi-squared test was applied. Content analysis of free-text comments was conducted. ResultsMost clinicians reported educating carers by educating patients at clinical contacts with patients. Carer involvement was largely an ‘add-on’; an active carer education strategy, where all carers were invited to attend, was not currently apparent. Clinicians endorsed the importance of educating carers about breathlessness through increasing carer confidence and/or control, helping patients' better self-manage breathlessness and potentially reducing admissions. Joint education with patients, giving practical advice, and strategies for helping patients were advised. To inform a future trial, clinicians identified improvement in patient outcomes, particularly patient quality of life as very important in enhancing clinician adoption of an educational intervention for carers. ConclusionThis survey revealed an appetite among clinicians for an educational intervention for carers of patients with breathlessness in advanced disease and provided important insights to underpin a future Phase II randomized controlled trial.

Carer experiences of inpatient hospice care for people with dementia, delirium and related cognitive impairment.

This study aimed to explore carer experiences of inpatient unit (IPU) hospice care for people with dementia, delirium and related cognitive impairment, following implementation of the Te Kete Marie (TKM) initiative aimed at improving care for this patient group. Semi-structured interviews were undertaken with 10 carers of people affected by these conditions to ascertain their experiences of the care provided during the IPU stay. Analysis of interviews found carer experience could be described by three underlying themes: staff attunement, environmental support, and discharge preparedness, which contributed to a central theme of carer confidence. The findings suggest that carer confidence is enhanced by: staff awareness and response to individual patient needs, interests and preferences, as well as carer requirements for information and consultation; an environment that engenders experience of comfort, safety, flexibility, privacy and outdoor connection; carer preparedness for patients who subsequently transition home or to alternative residential care.

CAN TIMELY PROVISION OF INFORMATION INCREASE CARER CONFIDENCE AND IMPROVE THE CARER EXPERIENCE?

CAN TIMELY PROVISION OF INFORMATION INCREASE CARER CONFIDENCE AND IMPROVE THE CARER EXPERIENCE?

A survey of senior equine management: Owner practices and confidence

Senior equines (16 years and over) comprise a significant proportion of the global equine population and there is concern that their management practices may not be entirely appropriate, particularly given recent evidence to suggest an under recognition of disease for which alterations are necessary to ensure optimal care. However, there has been minimal research to investigate the appropriateness of senior equine care and how capable their carers׳ are in providing care. Consequently, this study used a survey approach to investigate the management practices and health care provision for senior equines. A series of Likert type questions were used to assess respondent confidence in aspects of management regimes, recognition of age associated equine conditions, and perceived importance of nutrition advice sources, using a scale of 1–5 (1 being low and 5 high confidences). In addition, a combination of multiple response and open questions was used to report management practices in place. The survey was administered to those enrolled on a massive open online equine nutrition course and received 1342 responses. Results indicated an encouraging provision of care for senior equines, with associated high carer confidence in management regimes and concerted effort to understand and fulfill their senior equines requirements. However, the study highlighted key areas of requirements for owner education. In particular, the combined lack of frequent body condition monitoring and low confidence in disease recognition and supplement feeding. There was also a prevalence of suboptimal strategic worming and dry hay feeding. Given that veterinarians were consistently considered as the most important advice source it is likely that they will have an important role to play in the education that is required.

PA7 Developing a culture of medication safety in the palliative care home setting - supporting choices in place of care and death.

It is common informal practice in Australia for carers to be trained to administer PRN subcutaneous medications, especially in the last few days of life. A safe, legal and ethical framework for practice was needed to support end of life decision-making. To develop a culture of safety in the palliative care home setting by applying a Health Promoting Palliative Care philosophy, Kellehear (1999), to enable choice in place of care and death. Team brainstorming and literature review - developed: Carer education programme to evaluate a carer's preparedness to administer subcutaneous medications. Guideline Evaluation and Communication strategy Support Focus Ease of access to equipment Piloted 2009 RESULTS: Pilot 93% participants achieved wish to die at home - consistent at approximately 90% medication errors reduced. Carer confidence increased to confident and most confident. Hospital admissions reduced - remains approximately 8-10% of all days on service spent in hospital. Staff safety and satisfaction increased with reduction in after-hours home visits - averages remain at one or two per year. After-hours phone calls did not increase in response to practice changes. Health promotion, enablement and promotion of autonomy and support rather than control and disablement are powerful determinants of carer's ability to cope when caring for the dying, and enduring bereavement. This project is now standard practice and has transformed community practice of palliative care empowering consumers and health professionals with such potential. However, in response to criticism of this practice the carer's perspective will be captured in a carer survey.

Dance Like a Butterfly and Sting Like a Bee: A Preliminary Evaluation of a Six-Session Group for Foster-Carers and Adopters of Children with Attachment Difficulties

Due to early trauma, looked after children and young people often demonstrate a high level of emotional and behavioural difficulties which can be challenging for foster-carers to manage long term. In order to reduce placement breakdown, which will have a further significant negative impact on the young person’s psychological wellbeing, carers need to be supported to provide care that is attuned, reflective and responsive. The primary aim of this study was to examine qualitatively and quantitatively the effects of a six-week attachment-focused group for foster-carers and adopters on placement security, family and child distress and carer confidence in managing difficult behaviour. Thirty five foster-carers and adopters completed a series of visual analogue scales before and after attending the groups. Qualitative feedback was also collected. Qualitative and quantitative analyses were employed. Following the group, there was a significant increase in carers’ confidence and a significant decrease in distress caused to the family by the problem behaviours. There was no significant change in carer-rated child distress or placement security. Specific themes extracted from the qualitative analysis included: Learning and acquiring practical skills and developing the ‘attitude’ for reflective capacity about self and actions, reflecting about the child, challenges, learning environment and increases in confidence. Brief attachment-focused groups may increase foster-carer’s and adopter’s confidence in caring for children with attachment difficulties and may reduce familial distress. Future research should investigate how to accurately measure changes in reflective capacity of carers and whether such changes translate into child behaviour change.

Evaluation of a Training Programme for Foster Carers in an Independent Fostering Agency

The aim of this study was to evaluate a parenting programme designed for foster carers from an independent fostering agency. The programme (Park’s Parenting Approach) adapted existing parenting programmes to be more specific to the needs of looked-after children. Sixty-one carers consented to take part in the evaluation of the training, and 55 (90%) completed the programme. The training was delivered over 9 weeks, once a week for 2 h, and pre- and post-course evaluations were carried out at the first and last sessions of the course. The evaluation included carers’ ratings of their fosterchild’s most challenging problems, parenting style, carer efficacy and a survey of carer satisfaction with training. Results showed a decrease in foster children’s problem behaviours and an increase in carer confidence. Carers expressed a high level of satisfaction with the programme, and 100% felt that they would be able to retain the information and skills they had acquired on the course. The implications of providing training within an independent foster care context are discussed.

Caring with confidence for Huntington's disease

Purpose – The purpose of this paper is to describe the development of a psychoeducational support group for informal carers of people with Huntington's disease (HD). Design/methodology/approach – A clinical intervention was designed by a specialist HD service in consultation with HD carers, building on resources from a generic programme for carers, to meet the specific needs of HD families. A mixed methods, repeated measures design was used to examine any potential benefits this had on carer confidence and quality of life, and to ascertain the most beneficial aspects of the programme. Findings – At the end of the group, participants reported feeling more confident in caring for relatives with HD. Carers reported that gaining new information and being with other carers was helpful. Research limitations/implications – Although participant numbers were small, this pilot indicates that informal carers of HD patients appear to value psychoeducational support delivered in a group format. Evaluation of this type of intervention for carers warrants more rigorous investigation. Originality/value – There is a paucity of research that evaluates the impact of HD-specific carer interventions. This offers a description of a unique intervention that was aimed to increase knowledge and confidence among HD carers and to help provide the basis for more comprehensive services to be offered to carers of this devastating genetic illness.

Foster Carer-Foster Child Intervention (FFI): An Intervention Designed to Reduce Stress in Young Children Placed in a Foster Family

The Foster carer-Foster child Intervention (FFI) was developed to help foster carers recognise and cope with the stress that foster children under the age of five might experience when placed in a new family. Children who have been neglected or abused may have difficulty coping with stress and develop behavioural problems, and young children in particular can develop passive avoidance behaviour as a way of adapting to their new situation. The FFI aims to improve the interaction between foster carer and foster child by optimising the emotional availability, parenting skills and confidence of carers in a way that makes the child feel more secure. This article by Hans WH van Andel, Hans Grietens and Erik J Knorth explains the aims and principles underlying FFI and discusses its theoretical background, which includes attachment theory, psycho-education, mindfulness therapy and video interaction training. It then details the intervention and describes how it is being implemented in Dutch foster care practice. The article ends by outlining an ongoing randomised control study to determine the effectiveness of the intervention.

The effects of staff training on staff confidence and challenging behavior in services for people with autism spectrum disorders

The effects of a 3-day training course in the management of aggressive behavior in services for people with autism spectrum disorders were investigated using a quasi-experimental design. An experimental group received training over a 10-month period and a contrast group, which had received training before this study, did not. Staff training increased carer confidence, but there were no training effects of measures of staff coping, support or perceived control of challenging behaviors. Staff reports of service user challenging behavior management difficulties decreased in both the experimental and contrast groups. This study showed that staff training can increase staff confidence in managing aggression in people with autism spectrum disorders.