I’m grateful to have the opportunity to attend my second Transforming Care Conference in 2025, having attended the 6th conference in 2023 which was hosted by CIRCLE at the University of Sheffield.
Social and Human Rights in care are of great importance as a foundation to adult social care and an area I have a keen interest in as a human rights advocate and campaigner. Myself and my colleague Maria-Teresa Ferazzoli presented on IMPACT Networks on behalf of the team on the final day of the conference as part of a parallel session on ‘Participatory rights as as social rights: institutions, consequences and concepts in long term care’; chaired by Thurid Eggers, Ruth Abramowski and Miriam Lashinski.
Opening
The conference hosted around 404 attendees from 36 countries and we were given a warm welcome to Helsinki and Transforming Care by members of the organising committee. The conference has grown since the 6th Conference in Sheffield, England and the network has a goal of being less Eurocentric and more global in the future (we found out on the last day that the next conference will be hosted in Taiwan to reflect this goal).
Keynote
The first keynote of the conference was on ‘children's rights and welfare paradigms’ by Professor Margarita Leon from Universitat Autònoma De Barcelona, Spain to open the conference.
The first session I attended was:
S12 Strengthening supports available to long-term care workers and informal carers for improving their resilience and mental wellbeing through care partnerships - the EU WELL CARE project
We were introduced to the WELLCARE Project which is focused on Investing in the mental health and wellbeing of long term care workers (registered) and informal carers. They started with the context which explained there are approx 6.3 million people work in long term care (LTC) sector in the European Union (EU) and there is the prevalent issue of low wages, irregular working hours, heavy workloads and exposure to adverse social behaviours. 66% of workers face mental health risk compared to the broader workforce 43%. More than 52 million people are estimated to be informal carers in the UK and both face the risk of compromising their mental health and wellbeing over time. The speaker explained that so far informal carers and long term carers have been viewed as two disparate groups with varying needs and situations rather than being interconnected.
The next speaker was Marco Socci who discussed good practises to support the resilience and mental wellbeing of carers of older, frail and disabled people through literature findings from the WELL CARE project (Italy)
Paper 4, Lennart Magnusson, Elin-Sofie Forgarde
Of particular interest to me was a presentation by Elin-Sofie Forgarde which
features Blended Learning Networks (BLNs) in five countries for promoting the continuous involvement of LTC workers, informal carers and multi-stakeholders in the project. This includes cross country findings from national BLN sessions in which care partnerships within formal and informal LTC were discussed.
IMPACT Networks draw on the evidence and evaluation of BLN’s to create a delivery model within IMPACT to implement evidence (academic, learnt and lived) across the 4 nations of the UK so I was keen to understand how BLN’s had worked and what they had learnt.
BLN’s consist of heterogeneous communities of practice originating from the work of Etinenne Wenger (1998) Promoting awareness, shared learning, identifying needs for change and ultimately change at local level. Allow people to share their different yet complementary knowledge and experiences and learn from each other.
In this project, the networks work as follows:
- 2 facilitators - One lead who moderates and a research partner who takes detailed minutes.
- The facilitators meet 2 weeks before their session to prepare the agenda and materials
- They send materials to members ahead of the session to prepare
- The network meeting lasts approximately 2 hours which can be held online or in person, then detailed minutes are sent by the facilitators to NKA
- Next, a cross country post BLN session occurs 5-7 days later, where facilitators share their experiences and insights for mutual learning
- A synthesis of the minutes is prepared with a draft agenda for the next session
The project lasted from March-May and completed the following over the time period:
1. Overview of projects and reach consensus on ground rules
2. Discuss resilience and mental wellbeing and feedback on a draft plan
3. Feedback on draft guide, first discussion on care partnerships
4. Criteria for identifying and choosing good practises
5. Continue discussion and reach consensus
6. Discussion about implementation
7. Discussion of key informant interview findings and care frameworks and policies
There were 5-15 people in each session including informal carers, LTC workers, managers, policy makers, NGO’s, academia, trade unions and others
A summary of main findings about care partnerships
5 themes
- Dynamic collaboration - including the care recipient
- Being included - discussions made without the care recipient and their carer undermined care partnerships
- Mutual relationship - mutually enriching and potentially relieving and a way to make care system more resilient
- Mutual understanding - Effective communication and knowledge sharing - respecting the knowledge of each person
- Being supported - Care partnerships as potentially supportive emotionally and practically. Individual level and organisational level and societal level.
Evaluation of BLN’s - year 1
Questionnaires were used to collect members' experiences and the topics discussed with descriptive statistics as a method to review the answers.
93 people participated in BLNS, 65 answered the evaluation (71%) and informal carers were the more likely to complete
Questions in the survey were rated from Yes to a high degree to no not at all and included:
- Does participating allow you to express your views and be heard?
- Better understand your own situation?
- Others situation?
- Wider understanding of care in general?
- Awareness of other countries?
- Topic specific questions such as was it useful to discuss this?
- Areas for improvement
Conclusions
BLN’s are an opportunity for valuable discussions grounded in everyday realities and helps inform the core work of the project and they were appreciated by BLN members themselves taking part.
Incorporating BLN’s in EU research and innovation allows perspectives of different country represented
In the evening we were invited by the City of Helsinki mayor to the City Hall for a welcome reception in the city centre. We were taken to a beautiful building and heard the history of Helsinki and the Finnish way of living as ‘the happiest country on Earth!’
Thursday
The Keynote speech was delivered by Tom Shakesphere, I sadly couldn’t attend due to endometriosis pain flaring up, but from reading the posts on Bluesky using the #TCC2025 there was a key quote from Tom "If we really thought disabled people were people, we would organise the world very differently."
Thematic panel 13: Dark side of care
1. Rejecting care workers’ action proposals in older people care: a dramaturgical perspective to psychological safety in workplace interactions.
‘The belief that it is safe to take interpersonal risks such as voicing unorthodox ideas or admit personal mistakes without the risk of embarrassment or negative judgement from colleagues and managers.'
Psychological safety is encouraged and expected from supervisors within their teams, but there are structural constraints that can limit their ability to address workers concerns and preferences.
The question posed in the paper was how do supervisors and care workers promote psychological safety in workplace interactions in situations where the supervisor for some reason needs to reject a proposal or idea?
The team analysed care workers action proposals such as suggestions for changing work practises in the care home, and in detail looked at the proposals that were rejected in their original form. They found that key concerns for the workers included appearing as practically unrealistic and/or appearing as someone who deviates from professional norms and values. Key concerns for supervisors were around creating psychological safety, values based leadership, correcting workers whilst maintaining psychological safety - with the acknowledgement that it is difficult to do but not impossible.
2. Mental illness, resources constraint, and human rights: reflections from a scoping visit in Ghana - Maria Teresa Ferazzoli
Maria-Teresa presented on a working paper about a reflection which is still in progress. The presentation explained that the paper will include:
- Providing information about mental health care system in Ghana
- Reflections on the experience of developing research collaborations in Ghana
- Advocating for a continual collaborative reflection when conducting research in challenging contexts
The research context
- Raising attention for equal and ethical collaboration with the global south
- Problematic research from the global north exploiting global south academics and organisations to collect data
- Being attuned to the asymmetrical power dynamics in research relationships
- Recognise how research itself is a tool of colonization.
Maria explained the importance of reflexivity and reflectivity as a process and critical reflection to recognise and respond to differing amounts and types of social power as the researcher and involving participants in that reflection.
“Coloniality was not just something ‘imposed from’ but it was also something people were ‘subjected to’”
Maria wrote a paper written from her first visit to Ghana titled “It takes a village: what lessons can the UK learn from rural community mental health services in Ghana”. This paper covered:
- Identifying community assets
- Empowering communities to support people affected by mental illness
- Importance of partnerships and collaborations with non medical people and practitioners
- Rethinking the concepts of integrated care
This presentation discussed the second visit and the expectations vs reality.
The regions covered were
Tamale - Services were found to be efficient and there was a desire to do better
Bolgatanga - A further north rural area
Border of Burkina Faso: A rural area with no infrastructure, no electricity, water or accessible roads.
Maria-Teresa discussed questioning her role as a researcher with a focus on mental health care in this context, why she was brought there and her uncomfortable experiences and being critical of the work conducted by partners, and identified that reflections needed to include the people worked as a collaborative reflection.
Conclusion
Maria invited researchers to move away from a narrative of deficit when talking about global south and the Importance of establishing reflective collaboration in the early stages, with a proposal to use collaborative reflection as a tool for change and building a different narrative together.
There were lots of questions and feedback, with one audience member saying:
“I found it really refreshing, thank you for sharing with us those intricate personal things in research that never get spoken about, written or explored as potential for developing collaborative methodologies. I want to encourage you to continue with the paper. The idea of collaborative reflection is interesting and worth pursuing.”
3. Home as a place of exclusion visiting the dark side of current ageing-in-place policies. Finland
The next presentation was discussing the aims and outcomes of the SOLDEX project. Their aim was to gain an understanding of the everyday lives and social exclusion of older home care clients and ways of reducing old-age exclusion in the context of formal home care. The presentation showed a framework of old-age social exclusion which includes:
- Economic
- Social relations
- Services
- Community and spatial
- Civic
They shared some stark facts about the unmet needs and social exclusion of home care recipients, with some key statistics here:
Unmet needs among home care recipients
- 47.5% had difficulties making ends meet
- 1 fifth did not receive adequate help and support
- Almost a third felt lonely fair often or all the time
- 25% felt they id not get enough help for out of home mobility
- 41% did not have enough possibilities to go outside
- 17.6 felt insecure to go outside at night
Patterns of social exclusion
40.1% home bound and economically excluded
28.6% excluded from social relations
16% not excluded (had best health, mainly independent and older than those excluded on multiple domains)
14.3% multidimensionally excluded (needed most help in daily activities, had poorer health and used medical services the most)
Home care workers ethical burden
Former workers described a mis-match between older adult care needs and the resources of the home care services. The contents and organisation has changed over 10 years with a quote from a participant saying “todays trend is all about making savings”. The patients home was seen as a storage space where only mandatory care needs were met and all provision for other care needs stripped away.
“Many times i left work crying because i wasn’t allowed to do my work properly”
Home care workers time pressure and lack of resources reinforced those recieving care’s perceptions of being a burden; schedules are dictated by service providers and little room is given to the older adults wishes. Care recipients felt bad and worried about the workers workload and made efforts to reduce their burden by adapting or ‘giving up’.
Home as a place of exclusion
The place of residence appeared to lose its meaning of home due to restricted autonomy and social isolation.
Conclusions
- Current ageing in policies may create and maintain social exclusion
Aging at home is often idealised it can be challenging to maintain own agency - More emphasis is needed to promote social rights in older age
- Special attention on home care clients who already receive and use home care and health services the most as they are at high risk of severe multidimensional exclusion
- Homes are becoming institutions.
The final paper was on the sticking points of data care work in a Finnish healthcare and social welfare organisation, University of Eastern Finland
Thursday evening was the conference dinner at a beautiful scenic location for seafood - I didn’t attend (my anxiety and social battery doesn’t stretch that far, I have to pace myself!) and instead spent some time reflecting on the conference so far, and preparing for my presentation in the morning!
Friday
The last day of the conference had a large number of different sessions and discussions at the same time, I attended the session on participatory rights with colleagues ahead of presenting during the session.
The first presentation was about agency and social rights, with the title “What is the role of the concept of agency in the long term development of LTC policies?”. They began by providing context on agency - what it means and how it manifests:
- Agency as a cultural value and idea
- Agency as a political aim
- Agency as a norm in institutional regulation
Main assumptions:
- cultural ideas can influence the development of political aims
- The relationship between these different levels of agency can be coherent or be characterised by tensions and contradictions.
Providing options for decision making is important for agency, including information transparency and advice, as you cannot make meaningful decisions without having information.
The speaker had looked at development of the German LTC policies in 1994-2017 and found a substantial discrepancy between the explicit aim of the 1995-96 law to support the agency of older people in need of care and the partial lack of support for older peoples agency in the design of instruments. In 2017 the care concept was broadened and the social rights for care extended to more different types of care needs and options to participate in the decision re their care increased.
2. Participatory rights, resident councils and power relations in Canadian long term care settings
The second presentation was about participating in resident councils and the subsequent power dynamics of different models. Resident councils are forums in which people living in LTC meet on a regular basis to discuss concerns and share input with management
The speaker explained the definitions for types of spaces for participation, Gaventa (2006):
1. Closed spaces: decisions made by those in power without any possibility of broader inclusion
2. Invited spaces: opportunities for participation are created by authorities who invite citizens or service users to participate.
3. Claimed spaces: spaces created by less powerful actors through their own mobilization efforts.
They discussed the benefits and limitations of different modalities and presented their findings from citizens and professionals about their experiences of resident led and professional led spaces. I think the theory from Gaventa (2006) is an interesting way to discuss within co production methods and how truly co produced something can be when it is a closed or invited space.
3. Developing an easy read version of the Adult Social Care Outcomes Toolkit (ASCOT) for older people accessing social care
This was a really interesting presentation about the development of a bespoke easy read for older people accessing social care, and the differences between the easy read material for people with a learning disability to greater meet the needs of this target group. They ran a coproduction project to develop the easy read and are sharing the materials for free by registering here: www.pssru.ac.uk.ascot
IMPACT Networks commission and create easy read material for each topic, so the learning from this project felt important to help us understand the needs of different stakeholder groups, and not seeing easy read as a ‘one size fits all’. The context presented:
1 in 11 people aged 65+ in UK have dementia
60% of people receiving home care live with dementia and 70% in care homes.
It’s important to capture care related quality of life in an accessible way.
The new easy read version had the following changes:
- Removed images, the audience didn’t want the pictures as it was too much to look at
- Re-ordering of or addition of (more relevant) prompts for questions
- Changes to the wording of response options
- Removal of qualifiers in response options
Why did they get involved?
- Ability to contribute and make a difference
- Wishing to help others even if no benefit to self
Care providers and commissioners can use the tool to assess how well services are meeting people's needs.
IMPACT Networks as a tool for co-production
It was an honour to present to a busy room the work of the IMPACT team and wider IMPACT colleagues and share our learning. We explained the background of IMPACT networks which began with a knowledge exchange visit to NKA to learn about blended learning networks and how we’ve used this learning to develop a model to implement coproduction across the 4 nations of the UK.
We explained what the IMPACT centre is as an implementation centre and the role of IMPACT networks when meeting IMPACT’s objectives before discussing networks as a participatory approach which implements the core principles of the human rights model of disability:
• Autonomy: Freedom to make personal choices
• Dignity: Intrinsic worth of all individuals
• Participation: Equal partners in shaping services
• Aligned with UNCRPD: Self-determination, independent living, inclusion
14 IMPACT Networks have been delivered across the four UK nations on key adult social care topics. Networks were coordinated by diverse stakeholders: commissioners, service providers, advocacy groups, councils and people with lived experience.
Our findings illustrate how the Network model enabled:
- Genuine co-production and relationship building
- Shared learning, evidence creation and ‘ideas worth sharing’
- Challenging of traditional power dynamics in decision-making
- Serendipity: right place, right time and right people in the room
Exploring human rights and the value base in Swedish elderly care
This paper presented about how elderly care shall be oriented towards enabling older persons to live a dignified life and experience wellbeing. They did this through reviewing:
- Constructions in policy documents
- Reflections in social work documentation
They discussed a dignified life as a right: constructions of responsibility in elder care policy documents - ‘the concept of accountability is used to analyse how responsibilities and obligations are constructed policy documents - who is responsible for what and to whom. They discussed an umbrella concept related to human rights which should respect and include the following:
- A dignified life - the right to live in accordance with ones identity and personality
- Good quality care
- Well treatment
- Self determination
- Individual adaption
- Participation
- Privacy and bodily integrity.
Elderly care is arranged around needs assessments rather than rights which makes accountability more challenging on an organisational and individual level.
An email from the airline suggesting an early arrival at the airport due to peak travel times meant I sadly missed the final key note which was delivered by Prof. Håkan Jönson and Prof. Tove Harnett, but from reading the social media hashtag on Bluesky (TCC2025) the speakers guides us to escape “cognitive traps” and rethink how we view older people and their rights through a “disability lens”. They frame older care receivers as rights-holders, not just collaborators in care systems.
I’m incredibly grateful to IMPACT, the Centre for Care and CIRCLE for encouraging and supporting Maria-Teresa and I to present on the work we are passionate about and learn so much more about different international approaches and perspectives. Thank you Transforming Care, it was a really special week.
