Carer Participation Research Articles

An evaluation of patient and public involvement (PPI) experience in NHS Talking Therapies for anxiety and depression services: A framework analysis and practical recommendations

AbstractObjectivePatient and public involvement (PPI) refers to the active participation of people, patients, and carers in all stages of research and service delivery development. The aim of this study was to evaluate the PPI experiences in an NHS TTad (Talking Therapies for anxiety and depression) setting and to offer practical recommendations to support PPI activity in service development.MethodA semi‐structured focus group was conducted with five participants who had previously attended a series of PPI groups in TTad services in the Northwest of England. The qualitative data collected were analysed using the INVOLVE framework, incorporating both inductive and deductive coding.ResultsTwelve subthemes emerged, reflecting positive PPI experiences: appreciating PPI contribution, respect for mental health experiences, learning opportunity for PPI members, flexibility and guidance, reimbursement for PPI time, expectations of PPI role in TTad services, availability and commitment, inclusive participation in TTad development, responding to PPI input, diversity, peer support and continued involvement in TTad service development. An additional theme, safe space, emphasised the importance of a comfortable environment and discretion.ConclusionPractical recommendations are provided to enhance recruitment, engagement, empowerment and the impact of PPI in TTad services.

Prioritising Key Concepts for informed health choices in cancer: An evidence-based online educational programme

ObjectiveThe overabundance of health misinformation has undermined people's capacity to make evidence-based, informed choices about their health. Using the Informed Health Choices (IHC) Key Concepts (KCs), we are developing a two-stage education programme, Informed Health Choices-Cancer (IHC-C), to provide those impacted by cancer with the knowledge and skills necessary to think critically about the reliability of health information and claims and make well-informed choices. Stage 1 seeks to prioritise the most relevant Key Concepts. MethodsA project group and a patient and carer participation group completed a two-round prioritisation process. The process involved disseminating pre-reading materials, training sessions, and a structured judgement form to evaluate concepts for inclusion. Data from each round were analysed to reach a consensus on the concepts to include. ResultsFourteen participants were recruited and completed the first-round prioritisation. Fifteen participants undertook the second-round prioritisation. Nine Key Concepts were selected for the programme across five training sessions and two consensus meetings. ConclusionThe prioritised concepts identified represent the most pertinent aspects of cancer-related information for those impacted by the disease. By incorporating these concepts into educational materials and communication strategies, healthcare providers and organisations can potentially help cancer patients, survivors, and their loved ones to recognise and combat cancer-related misinformation more effectively. InnovationThis study introduces a participatory prioritisation process, which integrates the expertise of healthcare professionals with the insights of patients and carers, thereby enhancing the programme's relevance and applicability.

Examining the Impact of Long-Term Care Insurance on the Care Burden and Labor Market Participation of Informal Carers: A Quasi-Experimental Study in China.

Existing evidence from high-income countries suggests that policies aimed at enhancing access to formal care can reduce the burden on informal carers and facilitate their reentry into the labor market. However, there is limited evidence regarding the specific carers who have been most affected by such insurance. This study focuses on China's long-term care insurance (LTCI) and examines its effects on informal care burden and the labor market participation of different types of informal carers. Drawing data from the China Health and Retirement Longitudinal Study of 2011, 2013, 2015, and 2018, we employ a staggered difference-in-differences (DID) model with propensity score matching to analyze the impact of LTCI. To explore time-varying DID estimates, we adopted the DID event study design. Our study demonstrates that LTCI substantially alleviates the burden on informal carers while markedly boosting labor market participation. Notably, we found a more pronounced decrease in care burden among spouses, amounting to a reduction of 8.5hr per month. Concurrently, LTCI's impact on enhancing labor market participation was more significant among younger household members, reflected in an average income increase of 4,534 yuan per year. Furthermore, subgroup analysis highlights that LTCI primarily benefits informal carers providing care for older people with low income or those who were farmers or previously engaged in informal sectors. Our study demonstrates that LTCI has led to a reduction in care burdens and an enhancement in labor market participation. The impact is especially pronounced for informal carers of older people with low income or those with backgrounds in farming or informal work sectors.

Depression care integration in tuberculosis services: A feasibility assessment in Pakistan.

The co-occurrence of depression among tuberculosis (TB) patients is a critical issue, contributing to poor treatment outcomes, prolonged hospitalisations and increased healthcare expenses. The objective of this study was to assess the feasibility of delivering a co-designed depression care pathway within TB services in Pakistan. Mixed-method study. Routine depression screening for TB patients was conducted at three TB facilities in Peshawar, Pakistan, encompassing primary, secondary and tertiary care settings. All patients aged 18 or above (male and female) attending the three TB facilities between November 2021 and February 2022 were included in the study using the consecutive sampling technique. A total of 301 people with confirmed TB, within the past 4 weeks, visited the three TB care facilities; 191/301 patients were screened for depression. Approximately 35% of the 191 TB patients screened positive for depression, with varying severity levels. Qualitative findings highlighted the acceptability of integrated depression care, emphasising the importance of open communication and empathetic attitudes. Barriers to integration include stigma, logistical challenges, patient noncompliance and cost burdens. Facilitators included the empathetic attitude of healthcare providers and the availability of mental health services within the same facility. There is a high burden of depression in patients with TB, highlighting the pressing need for mental health support in this population. Acceptability of integrated care was evident, with factors such as co-located mental health services, training healthcare providers and provider empathetic attitudes playing a crucial role. Further research is required to evaluate the effectiveness of the integrated TB-depression screening systems towards improved health outcomes, implementation, scalability and impact on the broader healthcare system. To create a more inclusive and comprehensive TB and depression care pathway, we gathered input from both service providers and service users (TB patients, their carers). Reflective meetings with community leaders, social activists and health professionals from various sectors were also conducted during pathway delivery to get their insights. Power, gender and age imbalances were addressed by encouraging participation of patients and carers across gender and age groups. This approach ensured that the perspectives of all stakeholders were considered in the development of the care pathway.

Every mistake is a treasure: Lessons learned from the TRIANGLE trial for anorexia nervosa.

Despite several decades of treatment research for anorexia nervosa (AN), many of the same questions remain: how to boost enrollment, engage participants, prevent attrition, and meet the needs of a diverse patient population within the rigorous framework of a randomized controlled trial (RCT). In this research forum, we highlight some of the challenges and opportunities observed over the course of TRIANGLE, the largest RCT for severe AN treatment in the UK to date. We discuss strategies for addressing common challenges and avoiding common pitfalls and propose solutions to future researchers seeking to conduct treatment research in AN. Our experience underscores the value of involving people with lived experience at every stage of intervention research. We offer additional recommendations for treatment researchers, including, (1) early qualitative research to identify patient barriers and obstacles, (2) clear, systematic collaboration with clinical sites for patient recruitment and passive data collection, (3) careful consideration of assessment metrics, including repeated measurement of quality of life, (4) adopting a flexible, patient-centered approach to clinical trial research, and (5) considering the unique needs and obstacles that might impact carer participation in research and their ability to provide support to their loved ones. We hope that these lessons learned will prove fruitful for the next generation of researchers embarking on treatment research for AN. Using the TRIANGLE trial as an illustrative case study, we highlight the value of lived experience and codesign for developing and testing interventions for AN. We offer several lessons learned over the course of the trial, pertaining to trial enrollment, retention and engagement, measurement of outcomes, and research adaptations for real-world settings, and hope that these recommendations facilitate future treatment research for AN.

Addressing the challenge of engaging in paid work while undertaking unpaid caring: insights for improving employment inclusion of young carers

PurposeThis paper aims to explore challenges and opportunities associated with young carers' employment in Australia.Design/methodology/approachUsing a multi-stakeholder approach, this study captures the reflections of stakeholders (n = 8) and young carers (n = 10) about opportunities for, and experiences of, paid employment for young carers.FindingsDespite many organisations internationally increasingly pushing diversity agendas and suggesting a commitment to equal opportunity experiences, this study found that young carers' work opportunities are often disrupted by their caring role. For young carers to be successful in their careers, organisations need to provide further workplace flexibility, and other support is required to attract and retain young carers into organisations and harness their transferrable skills for meaningful careers.Practical implicationsThe paper highlights important implications for human resource management practitioners given the need to maximise the participation of young carers as workers, with benefits for young carers themselves, employers and society.Originality/valueThe research adds to the human resource management and work–family conflict literature in examining young carers through drawing on Conservation of Resources theory to highlight resources invested in caring leads to loss of educational and work experience resources. This leads to loss cycles and spirals, which can potentially continue across a lifetime, further contributing to disadvantage and lack of workplace and societal inclusion for this group of young people.

Shared decision-making interventions for people with mental health conditions.

Shared decision-making interventions for people with mental health conditions.

A Program for Valuing Mental Health Lived Experience in Social Work Education

ABSTRACT Participation and involvement of service users, carers, and families into the design, delivery, evaluation, and development of mental health policy and services is now a standard expectation. As social workers are employed in mental health settings, it is vital that graduates understand and ethically engage with mental health consumers, survivors, ex-patients, and family (CSX + F) in a meaningful and authentic manner. We argue this extends to fostering critical understandings of dominant discourses about distress, trauma, diagnosis, and intervention as a routine component of social work education. The Valuing Lived Experience Program (VLEP) described in this article within the Curtin University School of Allied Health aims to meaningfully embed the voices of people with lived experience of mental distress, trauma, and service use into the education of tertiary students and academics. Lived experience education in social work is vitally important and requires appropriate resourcing, clear purpose and principles, and attention to the democratisation of knowledge in order to achieve epistemic justice. In this article, the authors describe and contextualise the VLEP as a contemporary example of how lived experience in social work education can occur and be developed. IMPLICATIONS Meaningful participation of people with mental health lived experience is important to social work education. Lived experience education needs to be underpinned by clear ethical and theoretical principles for teaching and learning. Programs that rigorously engage with lived experience in mental health education can make a positive contribution to critical understandings of mental distress.

How to involve carers in the acute care: An online training for clinicians across four sites in England

IntroductionInvolving carers in the care of people with severe mental illness is known to bring positive treatment and psychosocial outcomes. However, evidence-based procedures to guide clinicians on how to involve carers in the acute care are lacking.ObjectivesTo provide an online training to clinicians working in the acute care regarding the organisation of a standardised meeting with the service user and their carer within the first week of hospitalisation, and explore their views after its implementation.MethodsWe trained six clinicians across four urban and rural sites in England, asked them to incorporate the meeting in their routine care provision and interviewed them to explore their experiences.ResultsClinicians reported training advantages such as ease of use, comprehensiveness and transferable skills, and meeting advantages such as shared goals development and acknowledgement of carer involvement value. They also mentioned challenges related to organisational/time constraints, expectations management, and distance to the hospital for carers. Clinicians suggested to further focus on carer motivation to engage, to use skills throughout admission rather than in a one-off session, and to provide a structured meeting summary. Those experiences were shared across sites, indicating similar benefits and challenges, not depending on the specific setting characteristics.Conclusions Providing structured training to clinicians may increase carer involvement in routine care in acute settings. Given the workload in such settings training endeavours should be brief and include skills that clinicians can apply to facilitate shared goal development and expectations management. The use of online meetings may allow increased carer participation in the acute care.DisclosureNo significant relationships.

Learning care from professionals : Evaluation of an educational program for caregiving relatives

Caring for relatives is often associated with psychological and physical stress. Caregiving relatives usually slip into the role unprepared and they lack both the knowledge and skills to fulfil the associated tasks. This study tried to measure whether participation in aspecial educational program affects the trust in one's own ability to care, the quality of life and the stress perception of caring relatives. A total of 58caring relatives were recruited to participate in the interventional study with a pre-post design. The intervention involves an 8‑month educational program, which was especially developed. The group was asked to answer validated questionnaires (ASKU, EQ-5D and HPS) at three time points (T1, T2, T3). The results showed asignificant influence of the educational program on self-efficacy (p=0.0012) of the participants between T1 and T3. With respect to the subjective quality of life and the perception of stress no significant effects were shown. The results showed that the participation of family carers in the educational program has a different influence on the defined parameters. Not only the stable quality of life but also the short-term significant reduction in subjective stress perception directly after the training (T2) can be emphasized as positive indicators for the program.

Telephone-based aftercare groups for family carers of people with dementia \u2013 results of the effect evaluation of a randomised controlled trial

BackgroundThe care of people with dementia is associated with enormous stress and, in a quarter of cases, leads to depression and anxiety disorders in the caring relatives. A specially designed inpatient psychosomatic rehabilitation (rehab) programme for family carers of people with dementia has proven to be effective but not sustainable. Therefore, the present study aims to increase the sustainability of the inpatient rehab programme by using thematically structured telephone aftercare group sessions.MethodsThe effectiveness of telephone aftercare groups was investigated in a randomized, controlled, prospective, mixed methods, longitudinal study. The aftercare intervention included social participation in monthly telephone group sessions for 6 months. The primary outcome was increased social participation of family carers, which, like the secondary outcomes (such as quality of life and subjective health), was assessed in written surveys at three or four measurement points.ResultsComplete data from 69 participants from the intervention group and from 72 participants from the control group could be evaluated. A small-sized reduction in restrictions on social participation was observed in the intervention group, whereas the reduction in the control group was negligible. The repeated-measures analysis of variance (ANOVA) showed sustained effects on the secondary outcomes, such as depression, perceived social support, and the mental health domain of quality of life of family carers, in favour of the intervention group. The results also showed that telephone-based aftercare groups had a rather minor influence on the use of support services. Except for those from family, friends and neighbours, existing support offers were hardly used.ConclusionTelephone aftercare group sessions for carers of people with dementia were not able to increase social participation at the expected magnitude. Nevertheless, the clear effects on selected secondary health-related outcomes and the assessment of the telephone-based group sessions by the participants show that the caring relatives were able to benefit greatly from this aftercare measure. Family carers should be informed more extensively about the corresponding resources and encouraged to use them. Overall, this new aftercare concept can be recommended for implementation, and its use also seems to be target-oriented for other indications.Clinical trial registrationGerman Clinical Trials Register: DRKS00013736, 14/05/2018.

What motivates informal carers to be actively involved in research, and what obstacles to involvement do they perceive?

BackgroundDue to demographic changes and a strained public sector operating in many countries globally, informal care is increasing. Currently, at least 1.3 million adults in Sweden regularly provide help, support and/or care to a family member/significant other. With no sign of an imminent decrease in their caring activities, it is important that informal carers are considered as a key stakeholder group within research that affects them, e.g., the co-design of carer and/or dyadic support interventions. The objective of this descriptive, quantitative study was to investigate informal carers’ perceived motivations and obstacles to become involved in research.MethodsA cross-sectional survey design was adopted, using first-wave data from a panel study. The data, collected in Sweden between September 2019 and March 2020, included survey responses from 147 informal carers who were either aged 60+ years themselves or were caring for someone who was aged 60+ years.ResultsOur main results showed that informal carers are, in general, interested in research. Slightly fewer were interested in becoming actively involved themselves, but older age was the only characteristic significantly associated with less interest of being actively involved. Two latent motivational dimensions emerged from the factor analysis: ‘family motivation’ and ‘the greater good motivation’. These, according to our results, almost equally valued dimensions, described the differing reasons for informal carers to become involved in research. The most common perceived obstacle was lack of time and it was reported by more women than men.ConclusionOur study contributes with new knowledge of informal carers’ perceived motivations and obstacles regarding carer involvement in research. Paying attention to the differing motivational dimensions held by informal carers could help researchers create conditions for more inclusive and systematic participation of informal carers within research. Thereby, increasing the opportunities for research that is deemed to be of higher societal impact. IRRID (International Registered Report Identifier): RR2-10.2196/17759.

"Context, content, and system" supporting digital health hub (DHH)-enabled models of care (MoCs) for fragility hip fractures: perspectives of diverse multidisciplinary stakeholders in South Australia from qualitative in-depth interviews.

SummaryCombining thematic analysis and a human–computer persuasive systems framework suggests that hip fracture recovery among older people can be enhanced through person-centered digital health hub models of care focused on behavior change education and integrated care. The findings intend to guide settings involving comorbid conditions and low- and middle-income countries in developing innovative digital health solutions.PurposeThe purpose of this study was to understand stakeholders’ perspectives on the development of a digital health-enabled model of care for fragility hip fractures and to map out factors that could influence the design and implementation of such a model.MethodsQualitative in-depth interviews were conducted with stakeholders from various clinical disciplines, allied health, and computer science. A hybrid process involving thematic analysis of the raw data using inductive coding was the first step. In the second step, the tenets of a theoretical framework (health behavior change supporting systems) were deductively applied to the thematic constructs generated as part of the first step of the analysis.ResultsIn total, 24 in-depth interviews were conducted with stakeholders. We identified 18 thematic constructs presented under the categories of context, content, and system. Context covered patient characteristics such as frailty, digital literacy, and patient or carer participation, whereas healthcare delivery aspects included the structure and culture of existing practice and the need for innovative holistic models of care. Content outlines the active ingredients and approach in developing a digital health hub, and it highlights the importance of targeted education and behavior change. The system is a complicated matrix crossing different aspects of healthcare and offering a value proposition design through personalization across modes of content delivery. This must foster trust, ensure adequate financing, and support ownership and privacy by establishing appropriate mechanisms for embedding change.ConclusionThe findings from this study provide insights around potential factors related to patients, community support, and healthcare delivery influencing the design and next-stage implementation of a digital health hub model of care for fragility hip fractures.Supplementary InformationThe online version contains supplementary material available at 10.1007/s11657-021-01031-3.

Respite service for informal caregivers: evaluation of simulation-training based education program

Abstract Background Currently, the care for elderly people is provided mainly on an informal basis by relatives. This is often associated with psychological and physical stress. Caregiving relatives usually take over the role unprepared and they lack both knowledge and skills to fulfil the tasks. Therefore, arrangements must be made to provide respite for family carers. Simulation training is a validated experiential learning tool traditionally incorporated in health professional education but has not been commonly used in the hands-on training of informal caregivers. This study tried to measure whether participation in a special simulation training affects the trust in one's own ability to care, the quality of life and the stress perception of caring relatives. Methods 98 caring relatives participated in the prospective, controlled (non-randomized) intervention study. The intervention involved an eight-month educational program in a simulation-training center in Graz (Austria). The program is either Manikin-based or Standardized Patient simulation trainings and take place in a show apartment. The impact on the caregiving competence, the quality of life and the burden-of-care was measured at the beginning (T1), after four months (T2) and after eight months (T3) using validated questionnaires (Self-Efficacy Scale, EQ-5D-5L and HPS). Results The results show a significant influence of the education program on self-efficacy (p 0.0018) and the increase in knowledge (p 0.04) of the participants. With regard to the subjective quality of life and the perception of stress no significant effects were shown. Conclusions The results show that the participation of family carers at the education program has different influence on the defined parameters. Not only the stable quality of life of the intervention group but also the short-term significant reduction in subjective stress perception directly after the training can be emphasized as positive indicators for the program. Key messages The results show that informal caregivers benefit from simulation training, since they can apply at home what they have learned during the training. Simulation training for informal caregivers significant influence their self-efficacy and the increase in knowledge.

‘My Contributions Made a Significant Difference’: Young Carers’ Reflections on Their Participation in Social Work Admissions

Abstract Whilst the participation of service users and carers (SUCs) in Social Work admissions (SWAs) has significantly developed over the past decades, concerns have been raised about the tokenistic nature of SUC involvement (Barnes, D., Carpenter, J. and Bailey, D. (2000) ‘Partnerships with service users in interprofessinal education for community mental health: A case study’, Journal of Interprofessional Care, 14(2), pp. 189–200) particularly in relation to young people (YP). Liverpool John Moores University (LJMU) in partnership with Barnardo’s Action with Young Carers Liverpool have (BAWYC) worked to develop meaningful participation for YP in SWA. In this article, we discuss our approach to YPs’ participation, exploring their experiences of involvement. Using a co-production approach, drawing on participatory action research methodology, we utilise in-depth interviews from a purposive sample of young carers (YCs) to ask questions about the nature of YPs’ participation including: How meaningful they consider their involvement; what are the outcomes and benefits and what are the continuing barriers? Adopting a reflective thematic analysis, research findings indicate that YCs feel valued and respected in their SWA role, and surprised at the level of involvement and decision making ascribed to them. They report personal development and feelings of self-worth and increased confidence, helping them to consider their own futures in a more aspirational way.

A Systematic Mapping Review of Family Perspectives About Received Mental Health Interventions

Purpose: Families experience their own journey in adjusting to the role of carer. The purpose of this review was to understand from the perspective of families and carers which practices, and health system responses meet their needs in supporting people who experience mental health challenges. Methods: A systematic evidence mapping review was conducted, through searching five electronic databases to identify peer-reviewed studies, written in English and published between the years 2010 and 2020, that prioritized the perspectives of families. Results: Fifty-five studies met the inclusion criteria and were mapped according to the country of author, year, methodology, who delivered, and intervention mode and format. Discussion: The review demonstrated a diversity of interventions with growing numbers of studies considering the view and experiences of carers. There is evidence of increasingly active participation of carers in designing, leading, or facilitating interventions, recognizing the importance of coproduction in tailoring family and carer support.

Practices of inclusion for carers who are higher education students

ABSTRACT The role of unpaid and informal care is a crucial part of the health and social care system in Australia and internationally. As carers in Australia have received statutory recognition, concerted efforts to foster engagement in carer participation in work and education has followed. However, little is known about the strategies and policies that higher education institutions have implemented to support the inclusion of carers. To address this lack of information, existing higher education institution policies were located to canvas supports available to student carers and identify organisational representative participants. Semi-structured interviews were then undertaken with staff from five higher education institutions to discuss their institutions’ policies and their experiences as stewards of carer inclusion and support. Findings indicate difficulty in identifying carers, the infancy of inclusion policies, support measures that are similar to those for students with a disability and difficulties accommodating flexibility in rigid institutional settings. Findings were synthesised into a framework of strategies, policies and procedures of inclusion to support student carers in higher education.

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

ObjectivesTo 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...

Implementing national mental health carer partnership standards in South Australia.

Objective The aim of this study was to describe the current state of carer engagement and partnership in two mental health (MH) services in South Australia and the implementation of the six partnership standards in A Practical Guide to Working with Carers of People with a Mental Illness. Methods Anonymous surveys of carer experiences and clinician self-ratings of their own practice against the six partnership standards were completed by 94 staff and 58 carers within public and private MH in-patient units before and after exposure of clinicians to education about the partnership standards. Descriptive statistical analysis was performed and, where applicable, a comparative analysis used the two-sample Z-test of proportions. Qualitative data was analysed thematically. Results Considerable gaps were evident between carer experiences and clinician self-ratings of their own practice. Overall, the surveys point to the lack of a consistent approach by both public and private services, and suggest potential barriers to fostering carer participation and engagement. Confidentiality was a particularly noted barrier to partnership with carers. Conclusion Significant improvement is needed to meet the partnership standards. Brief exposure to the Guide is not, in itself, sufficient to effect change in the overall attitudes, skills and knowledge of clinical staff about engaging carers. Significantly more focus on staff education, clinical discussions and supervision is needed to meet the MH carer partnership standards. What is known about the topic? Partnership with MH consumers and carers is an established key principle within national MH policies and accreditation standards. Family carers play an important role in supporting consumers' recovery, yet many carers continue to report being excluded, particularly by in-patient clinical staff. What does this paper add? This is the first study to investigate the partnership standards in practice by comparing the perspectives of carers and in-patient MH clinical staff. What are the implications for practitioners? Improving partnership with carers of people with mental illness will require significant MH service leadership support shifts in current practice and culture. In addition, a more nuanced understanding of confidentiality is required to overcome the barriers to involving family carers more meaningfully in care.

Evaluation of the health pathway through the patient-experience in the French program PAERPA

Abstract The patient-experience is an emerging concept in research and medico-social action, and its consideration in the development of care pathways is encouraged (e.g. ’Ma Santé 2020’ national plan in France). In addition, the patient-experience of the elderly subject has specific dimensions and his collection presents difficulties insufficiently explored. PAERPA (elderly people at risk of loss of autonomy), French national experiment for the care of frail elderly patients, offers an opportunity to return to these issues. The objective of this study, mandated by the ARS of Hauts-de-France, was to collect the experience of the elderly PAERPA. Faced with the difficulties of current methodologies, several methodological approaches have been combined: semi-structured individual interviews face-to-face or by telephone, dedicated questionnaire. In addition, a specific grid was developed to explore the home-based patient experience, including seven dimensions of the patient-experience identified in the literature. This study was conducted in the second half of 2018 (3 years and a half of the start of the project). The experience of 43 seniors and / or caregivers was collected. Patients PAERPA are generally satisfied with their care but they have difficulties in making the link between their care and the actors and devices specific to PAEPRA experimentation. Human connection and listening seem essential for the elderly patients included. Other dimensions, such as stakeholder coordination, remain controversial and more difficult to grasp. Methodologically, the particular situation of seniors, such as sensory or memory disorders, requires a major adaptation of the survey tools. In PAERPA, the patient-experience of the frail elderly subject passes mainly through the feeling of a human connection. Current methodologies do not seem fully adapted to collectively capture the experience of frail elderly patients. Key messages Evaluating the patient-experience to improve the health pathway is possible and necessary through a qualitative collection, regularly, in itinere. The peculiarities of older people often require the participation of carers, who need to be involved in the assessment of the patient-experience and raised awareness.