IJNHCR Journal

Background

The Faculty of Nursing and Midwifery (FNM) in the Royal College of Surgeons in Ireland University of Medicine and Health Sciences (RCSI) was commissioned by Nursing Homes Ireland, (NHI) to undertake research into human rights for older persons in the nursing home sector in Ireland.  The study was informed by international best evidence.  NHI is the national representative body for the private and voluntary nursing home sector.  There are over 440 such nursing homes in Ireland providing care to over 34,000 people.  The mission of NHI is to actively support and represent members, enabling them to provide sustainable, highquality care to their residents.

The Universal Declaration on Human Rights was proclaimed by the United Nations General Assembly in December 1948, in Paris (General Assembly resolution 217) as a United Nations International covenant on civil and political cultural rights (1966) as a common standard of achievements for all peoples and all nations and acts like a global road map for freedom and equality – protecting the rights of every citizen [1].  The Irish Constitution 1937 first mentions human rights.  Human Rights are explored from several dimensions all of which are viewed as supporting human rights in residents in long term nursing home care.  The Human Rights Commission of the United Nations delivered the Human Rights Act (1998) Universal Declaration of Human Rights Preamble (United Nations (2024) [2].

Human Rights are the rights that human beings are entitled to, rights that allow individuals to live our lives as equal citizens. Human Rights are not “given to us” by others and as individuals we are entitled to claim our rights or have them fulfilled.  Human rights are about our basic needs as human beings. Human Rights capture the core rights individuals are all entitled to so that we may develop our potential and live our lives in dignity and respect. The Irish Health Information and Quality Authority [3] developed a guidance document on a human rights-based approach to care and support in health and social care settings. FREDA: a human rights-based approach to healthcare was published by Curtice and Exworthy [4].

FREDA - Fairness, Respect, Equality, Dignity and Autonomy are the core principles and values which form a rights-based approach and underpin all the articles of the Human Rights Act.  Implementing a rights-based approach means ensuring that professionals understand what human rights means and how human rights are supported by core values that shape practice and service delivery where the resident is provided with a range of information to facilitate their own decision-making that is relevant to their personal values, beliefs, wishes and feelings [5-7], and of the need to preserve a holistic view of the wellbeing of residents of nursing homes and be mindful of their rights as citizens [8]. There is no Convention on the rights of older persons. This is a clear gap in the current international human rights infrastructure that a new Convention would remedy [9].

Study Methods

Aim of study: To consult with stakeholders on the human rights of older persons in nursing homes in Ireland, and to explore the perceptions and insights of relevant professionals and care staff regarding the implementation of these rights in practice.

Selection of focus group participants: This was guided by NHI who provided names and email addresses of potential participants to the lead researcher.  Consultation and collaboration in this regard took place.  The selection criteria were experience or expertise in the sector, willingness to participate and available for the focus group.  Twenty-nine participants were selected from organisations including advocacy and representative groups, voluntary organisations, statutory and independent providers, government agencies and professionals involved in caring for older residents in nursing homes and social care services.  Also participating were NHI Nursing Council, senior staff and clinical staff, national organisations pertaining to human rights and older persons and international experts in the field of human rights. 

Focus Groups process: Following the Rapid Evidence Review and analysis of data previously undertaken by this research group [5], five focus group interviews were undertaken virtually, in February 2025 with twenty-nine participants.  As the focus group interviews followed the evidence already generated from the evidence review the researchers developed a list of aspects/questions or issues to focus on. Following data thematic analyses, a report was generated by the researchers for NHI. 

Management of data: Interviews were semi-structured in nature.  Participants were informed that their comments would be included in anonymous form.  Interviews lasted from 60-90 minutes in duration.  Guiding questions were asked with follow up probing questions based on the content or theme of response. Each session was audio recorded, and all recordings were transcribed by a 3^rd party transcription service. Content analysis was used to identify themes from the transcribed evidence.

Research questions: Focus group questions were framed around what human rights in nursing homes look like for those using it; how human rights integration and implementation in nursing homes may be achieved; and what cultural and social dynamics influence human rights in nursing homes?

Content analysis methodology: The methodology adopted is based on CA as defined by Krippendorff [10] drawing on the work of Lasswell [11].  Application of this approach using NVivo software ensured that emergent codes created during the encoding process were conducted line-by-line on every submission.

Findings from Focus Groups 

The key findings are grouped into six main areas and are presented in relation to human rights in older person care.  These areas are:

1. Centrality of Person-Centred Care which encompasses empowerment and the FREDA principles, autonomy, safeguarding, advocacy, will, choice and preferences, education and training, assisted decision making and promotion and implementation of dignity.
2. Regulation and Compliance includes regulation and repercussions in maintaining human rights and mandatory human rights.
3. Family Involvement and Communication demonstrates the complex dynamics of family involvement, communication and relationship with families, and the importance of involvement and autonomy.
4. Culture and Ethos relates to cultural and institutional barriers, risk management, fear and risk in delivering human rights.
5. Challenges for Organisational Development include restrictive practices and their implications, religious and cultural needs of residents, balancing human rights and communal living and sexuality and intimate relationships.
6. Economic Challenges and Resource limitations are presented in relation to the funding model.
7. Depravation of liberty and managerial challenges in delivering human rights.

Centrality of Person-Centred Care

The centrality of person-centred care to promoting human rights was seen by participants as the most important area emphasising a need for balance between ensuring resident safety in nursing homes and respecting their autonomy and right to make choices, even if those choices involve risks.  They expressed concerns about the impact of restrictive practices aimed at individual safety on the freedoms of other residents.  Participants placed the importance of including the perspective of residents in discussing risks and the need for a shift from a medical to a rights-based approach that recognises residents as individuals with their own rights. 

It links to a move away from a medical model approach to that rights-based approach with people and moving away from doing what’s in their best interest to recognising their rights to make their own decisions and even where that involves risk and ...

(Participant 12)

A need for more personal space was discussed and a desire for a cultural shift towards greater respect for personal choice and dignity in care settings.

The key piece is around the individuality of each resident and it’s ensuring that people are not seen as a homogenous group and treated as such. So, it’s being very person-specific and personcentred in terms of how we treat people and how we work with people.

(Participant 1)

So, things like advocacy support are quite important in terms of where somebody maybe doesn’t have a natural support, where there’s no conflict of interest, ensuring that the person’s voice is heard, that the person’s wishes are brought to decision-making tables, and that where somebody requires support to address some of the more nuanced relationships, particularly where maybe family members think something else is best for the person and what they want. That can be very difficult to speak up.

(Participant 12).

Promoting human rights may foster a more positive view of living in care and encourage a perspective that views this phase as a different, rather than an ending chapter of life, while upholding the dignity of all residents.  Therefore, any model of care must prioritise human dignity, respect, and the active involvement of residents in their care decisions, recognising that entering care should be viewed as a transition rather than an end-of-life scenario.

I think the relevance is that very often people who go into nursing homes are older citizens. And there’s a view that this perhaps is the last chapter of their life rather than the next chapter of their life. ... I think that promoting their human rights might help a shift in that thought.

(Participant 13)

Empowerment is mentioned in upholding human rights in older person care and respect for individuality and personal choice by acknowledgment of the FREDA Principles: Fairness, respect, equality, dignity, and autonomy.

Maybe the FREDA principles would be very important to mention.... That person-centred piece in relation to upholding the rights and autonomy of the person, empowering them to make their own decisions.

(Participant I2)

Overall, there is a call for empowering residents to make their own choices, even if they carry risks, and for improving the narrative around autonomy in care.  Advocacy efforts and employee education were suggested as potential solutions to empower residents, ensuring their voices are heard in decision-making processes while balancing their safety with personal wishes.

A collaborative approach between residents, their families, and caregivers is advocated, aiming to retain residents’ control over their daily lives. This partnership is necessary to respect their dignity and choices thus fostering a culture of empowerment despite regulatory challenges.

I suppose it’s that piece around relinquishing control and power like that. Just because these people move into a new place of living with some supervision doesn’t mean that they shouldn’t have some or all levels of control over their choices. Like that routine piece when they eat, whether they dress or don’t, whether they leave or stay. It’s that power piece.  ...It should be a partnership or a piece of work between the resident and their family and the carers and the nursing home.

(Participant 4)

Autonomy: Participants advocated for a system that safeguards residents’ rights according to the Assisted Decision-Making Act, stressing that choices must reflect the person’s will and preferences and the importance of empowering residence by focusing on placing the resident at the centre and respecting their likes and dislikes, ensuring privacy, and fully empowering them.

Put the person, the resident in the centre and then to work with their likes and dislikes and to respect them, privacy and to empower them as much as they could do.

(Participant 5)

Safeguarding: The introduction of new safeguarding laws has added financial pressure to maintain staffing levels necessary for quality resident care.  Concerns were raised about the one-sizefits-all funding model, which may fail to accommodate individual resident needs leading to slower requisite improvements in care practices to comply with the new legislation. Contributions also addressed the use of restraint, both physical and chemical, and the necessity for safeguards against such practices.

We are seeing some innovative ways of trying to reduce things like admissions to hospitals. So, we’ve got things like the X-ray machines that can go out to the services.  ...  We are seeing that where those resources are targeted, they do have such a positive impact. I think where resources aren’t targeted in the right way, that can be a big challenge for organisational development

(Participant 25)

Advocacy: Participants raised the importance of family involvement because they are seen as advocates for residents, promoting personalised care proactively.  Nursing staff should be encouraged to reclaim their advocacy role amidst systemic challenges, focusing on understanding and communicating residents’ needs by a shift toward a person-centred care approach that is rights-based and appropriately implemented.  Overall, there is a call for systemic change to improve practice in care environments, ensuring dignity is central to care provision.

I do believe that we need to also look at nursing advocacy more and more. I think nurses do know their patients or residents, even in whatever settings. But being a nurse myself, I sometimes feel that we’ve lost that ... particularly in the care of older persons, because I think the nurse, and not forgetting healthcare assistants lead by being the advocate for them.

 (Participant 15)

Participants observed that residents frequently and consistently voice their care preferences, which often requires outside mediation to preserve trust within relationships, particularly in end-of-life contexts. Advocacy Organisations assist residents in developing advanced care plans to ensure their wishes are respected and to reduce family conflicts during emotionally challenging periods.

One of the barriers is where the voice of the person is being lost. There’s a lot of parties involved, there’s staff, there’s families, there’s MDTs, external people, and I suppose, an advocacy service as well.

(Participant 15)

A focus was also placed on the individuality of care, encouraging practices that respect the preferences of residents, particularly when it comes to food and activities.  The call for a dedicated government figure, such as a commissioner for older persons, is put forward to elevate the concerns and rights of older individuals, strengthening advocacy and accountability within the system.

I think there’s been a very large cultural shift in terms of a move to a rights-based approach over the last number of years, and that’s been at quite a high level in terms of change of law and introduction of some of these concepts.

(Participant 12)

Will, Choice and preferences: Discussions emphasised the importance of involving nursing home staff in understanding residents’ rights and choices to avoid conflicts and ensure informed care by highlighting issues related to deprivation of liberty in nursing homes, where residents may be confined against their will or subjected to restrictions that limit their freedom of movement. There was a consensus that care decisions should prioritise individual preferences and be guided by appropriate assessments involving residents.

Well, I suppose it’s a requirement for Ireland really to be compliant with international human rights law, for us to have appropriate protection of liberty safeguards built into legislation in an Irish context. And obviously, there’s work underway by the department of health to formulate that policy and legislation. So hopefully we’ll have that soon.

(Participant 12)

Providers face regulatory pressures that can conflict with empowering residents to take positive risks and make choices centred on their individual rights and freedoms and these concerns could result in institutionalising behaviours that are perceived as protecting staff from litigation and regulators discontent.

... One of the things I think we need to be very careful about is institutionalising a them and us kind of situation where the rights that are being promulgated by regulatory authorities, sometimes, they focus on a narrow range of rights...

(Participant 8)

Education and Training:  Education and training for staff, families, and healthcare professionals are seen as vital in promoting a rights-based approach to care and as critical components of integrating human rights without which regulation alone would fail.  Therefore, a collective and resource-supported effort is required to embrace human rights in nursing homes.

But the training of all those health professionals, doctors, all healthcare staff, nurses, healthcare assistant needs to be across all those professions that people are having understanding around the right to make decisions and the right to take risks ...

(Participant 10)

Assisted decision making: Training for staff on human rights and the Assisted Decision-Making Act was seen as vital in ensuring staff are equipped to support residents in making informed choices. There was also a need to raise awareness among residents about their rights, including having mechanisms for expressing grievances or preferences.  The interplay of individual liberties and regulatory frameworks creates challenges in fostering a genuinely person-centred care environment. This was deemed crucial for understanding in the first instance and implementing these principles in the second. Recent legislation supporting assisted decision-making was seen as helpful in this regard as a training driver.

Yes, just awareness and training are how we’ll implement, continue to implement that better, and I think the enactment of the Assisted Decision-Making legislation in 2023 created the perfect forum for that to become mandatory now.

(Participant 20)

Contributors highlighted the importance of creating a supportive environment that allows residents to communicate their rights and concerns, advocating for mechanisms like residents’ committees to facilitate this.  The necessity of addressing systemic issues within care models and promoting awareness of rights among both staff and residents are reiterated as crucial for fostering a rights-based approach in nursing homes.

,...I think there’s an educational piece, the training elements that comes into play for human rights-based approach for staff.

(Participant 16)

Restrictive practices and their implications: While staff aim to provide the best care possible, systemic constraints, including government policies and funding issues, complicate their ability to fulfil this goal and can negatively impact on staff, managers, residents and families alike.  Comments made by residents highlight the need for additional resources and recognition of the complex needs of residents which can hinder a person-centred approach to care.   Participants highlight a “culture of blame” that discourages risk-taking and open communication among staff, which hinders resident engagement.

In relation to the culture of blame as well in relation to the systemic and the system level, it is about the finger being pointed at you and feeling like you’ve done something wrong, even as having to do with someone takes a risk out of their own choice and then it’s a Regulation.

(Participant 18)

Religious and cultural needs: Participants expressed the importance of recognising residents’ religious and cultural needs while managing communication barriers in a multicultural environment. Emphasis was placed on the need for adequate cultural education for international staff to foster understanding of residents’ backgrounds and enhance their ability to communicate effectively.  The conversations underscore the necessity for improved communication and cultural awareness to enhance care quality in diverse nursing home settings.

We’re a multicultural society, that’s good and that’s important, but that communication piece remains very important to that population who are residing in the nursing homes. So, speaking to them in a way that’s meaningful to them I think is important.

(Participant 10)

Balancing human rights and communal living: Fear of regulatory repercussions and litigation influences decision-making, leading to a focus on compliance that can detract from individual rights. Risk aversion appears to be a significant issue, where the fear of negative outcomes leads to restrictive practices, prioritising safety over individual autonomy.

Other challenges would be maybe being risk averse. I think that’s one of them. And another one, fear of litigation ... It’s staff being afraid that families will sue, so that almost gets more important than affording the older person to make maybe an unwise decision.

(Participant 2)

And

You can make certain decisions, but sometimes things come down to resources, budgets, access to services, they’re all outside of, a lot of things are outside of your control ... when you’re doing your positive risk taking, you have to think of absolutely everything. Sometimes it’s more than the resident’s voice.

(Participant 20)

Sexuality and intimate relationships: Participants discussed the intersection of individual activities, human rights, and regulatory compliance in nursing homes expressing a desire for freedom in relationships, highlighting fears and monitoring restrictions that can violate human rights. They observe a cultural view that devalues the sexual rights of older adults and individuals with cognitive impairments, noting that these topics are often overlooked in caregiver training.

.... How do we monitor it {sexuality}? And that straight away, the word monitoring, that’s a restriction of someone’s human rights. Now, I know there’s reasons why, etc, but there’s a good bit of work to be done. (Participant 29)

and

I think there is work to be done around that {sexuality], for sure, but it’s culture as well, and it’s the culture of the staff who are giving the care. A lot of our staff come from different cultures and different belief systems, and they believe in their belief systems that maybe residents are doing wrong by exploring their sexuality, regardless of whether they’re living with dementia or not. I think if people were honest and true to themselves, most people would admit that they’re afraid of that.

(Participant 29)

Economic challenges and resource limitations

Discussions highlights the intertwined challenges of finance and human rights within nursing homes.  Insufficient resources hinder the ability to provide quality, person-cantered care, indicating a need for more targeted funding in older person care compared to other sectors.  It also notes the challenges of transferring residents in acute conditions and the necessity for advanced cost planning to meet evolving care needs.

I have a real fear that as this {economic challenges} becomes more apparent and people understand it more the requirements and resource requirements will be greater.

(Participant 29)

Concern was expressed over trends towards larger nursing homes, which may compromise the quality of care.

Economic challenges and resource limitations:

... My point is that economies of scale do matter, and if we’re merging or moving and evolving to one model, which is larger, larger, larger nursing homes, with smaller ones, I do have a concern around what the implications of that are.

(Participant 2)

Finance plays a critical role, particularly with new human rights and safeguarding laws increasing the staffing levels needed for quality care and resident dependency and complexity which can result in significant financial burdens.  The frequent turnover of staff hinders the continuity of care, affecting residents negatively. Participants emphasise the need for a shift in perspective towards viewing care for older individuals as an investment rather than a cost. 

Sometimes we don’t focus on the positives because we’re focused on dealing with the issues every day. But as {participants name} has just outlined, mobile medical diagnostics is a classic example whereby historically someone is query fracture may end up in A&E having an X-ray, whereas now the X-ray machine comes out to the nursing home. So that’s a positive and we need more of that.

(Participant 25).

Existence of Deprivation of Liberty

Participants were asked to discuss the extent to which deprivation of liberty exists in nursing home settings based on their experiences. The discussion centred on impact on residents’ freedom of movement. It is acknowledged that while nursing home residents often face restrictions, their own frailty can exacerbate these limitations.  Participants agree that no nursing home is entirely free from restraint and acknowledge the necessity of certain safety measures due to risks like falls.  Education for staff is emphasised to align their understanding with residents’ rights and choices. Participants argued for balancing safety with respect for personal freedom while emphasising that a successful outcome would be predicated on adequate funding and support to meet individual needs.

But you must look at it on a person-centred basis as well. You can’t just restrict everybody. But there are restrictions that you’d prefer not to have.

(Participants 28)

Promotion and implementation of dignity

Participant were asked to discuss how the promotion and implementation of dignity could be optimised in nursing home settings based on their experiences.  Key points emphasise the need for well-trained staff who understand individual residents’ preferences and quirks to enhance their dignity.  The conversations addressed the challenges posed by staff turnover and the difficulty in maintaining dignity when staff are unfamiliar with residents. The cornerstones of nursing care require effective communication and a good nurturing environment for residents to be able to live as comfortably as possible in nursing homes during the final stage of their life.   

Maybe one area that we haven’t mentioned in terms of dignity, and I think it’s particularly pertinent in this sector, is end-of-life planning, advanced planning, and just that I suppose dignity being particularly sensitive and important around that

(Participant 12)

Participants underscored the importance of the environment and of staff understanding residents’ preferences and unique personalities, particularly for those with dementia. Staff training and education are crucial for respecting dignity, especially in challenging situations. A shift towards single or twin occupancy accommodations in nursing homes is noted as a supportive step for ensuring privacy and dignity. The involvement of legislation aimed at assisted decision-making is recognised as enhancing staff training and understanding.

Most accommodation being built now is either single or twin, which supports that privacy and dignity for people, which is important. It’s a multi-faceted thing and it needs to be balanced

(Participant 10)

Training and awareness among staff were deemed crucial for understanding in the first instance and implementing these principles in the second. Recent legislation supporting assisted decision-making was seen as helpful in this regard as a training driver.

Awareness and training are how we’ll implement and continue to implement that better, and I think the enactment of the Assisted Decision-Making legislation in 2023 created the perfect forum for that to become mandatory now. (Participant 20)

Regulation and Compliance

Participants highlight the need for a significant cultural shift in the approach to human rights in nursing homes, emphasising that regulation alone cannot effectively mandate human rights. Documentation is emphasised due to fears of litigation and regulation, creating a challenge in balancing safety while respecting residents’ rights. Implementing restrictive practices for some residents can negatively impact others, complicating personcentred care in large residential homes. Participants cited a need for collaboration among regulators and stakeholders to reduce the fear of compliance, allowing staff to prioritise individual care.

Documentation is huge. Always, I suppose, the fear of litigation, the fear of regulation, the fear that you must keep everything documented.

(Participant 17)

Participants argued that there is a notable tension between fulfilling regulatory requirements and respecting residents’ preferences and managing a diverse population with varied preferences can be challenging. Furthermore, concerns were expressed about balancing employees’ rights in their caregiving roles, especially considering regulatory pressures stemming from past issues in residential care settings.

And I think on one hand we’re trying to give the resident an experience that feels like their home or that is their home. But on the other hand, we have all these IPC regulations.

(Participant 4)

Regulation and Repercussions

These are seen as challenges for both staff and residents in managing risk. Concerns about potential accidents, such as residents falling and injuring themselves weigh heavily on decision-making, particularly considering regulatory scrutiny from the Regulator. Participants advocate for a more balanced dialogue that respects individual rights and encourages healthy risk-taking. The conversation underscored the need for a more compassionate, human rights-based approach to care, asserting that both staff and families require a better understanding of rights and the importance of transparent, supportive complaint mechanisms.

What everyone’s saying is right. Families are a big part of it. Regulation is a huge part of it. People, and they might not admit it, but they make decisions based on fear and the implications and the notification that you must send off, because unfortunately people believe notifications is that something wrong has happened.

(Participant 29)

Mandatory Human Rights: Participants argued that making human rights a core aspect of care rather than a checkbox requirement, suggesting that a balance between top-down regulations and grassroots education is essential. The need for stronger, clearly defined human rights indicators within regulations is discussed, as well as the importance of resourcing and oversight to ensure effective care is delivered. 

Family Involvement and Communication

Family’s dual role as advocates can sometimes be a source of tension.  Participants highlight the importance of transparent communication and education to support residents’ rights while fostering collaborative relationships.  Resident highlights choice as paramount.  There was a recognition that while some nursing homes perform well, systemic improvements are still needed, particularly regarding resident’s rights and the flawed funding model.

The funding model is flawed. Categorically, it’s a one-size-fits-all, and we all know that our residents are all very, very different as individuals. So, it is very important to note that.

(Participant 29)

Complex dynamics of family involvement: The discussions revolved around the complex dynamics of family involvement and social dynamics in the care of residents in nursing homes, exploring both the apprehension felt by staff and the friction that may arise between the desires of families and the rights of residents. There was recognition that family support is crucial for advocating for residents and that staff understand and approve of this, yet it can sometimes lead to conflicts that affect the care dynamics. The introduction of advocacy could help mediate these situations.

... sometimes, to preserve the relationship of trust, you bring in an external person. And I know that both NAS and SAGE have been very supportive to help residents develop advanced care plans and make sure their wishes are respected in that instance, because when you have a lot of friction, it’s very hard to keep a good relationship around care. And if you get to the end of life, you want a family to be able to enjoy it.

(Participant 28)

Communication and relationships with families: Participants expressed concerns about friction between the family and care teams, especially when family wishes conflict with residents’ rights and preferences. They highlight the necessity of detailed discussions and education for families regarding care plans, human rights, and the importance of conveying information effectively. Participants argued for improved communication and managing expectations to ensure families understand care processes, which could lead to better relationships and reduce misunderstandings.

I think a lot of it is down to communication between the nursing home and the family.  And there can be a management of expectations piece maybe on both parts that should probably be laid out on the table at the outset.  So, “this is what we would like to do for our family member now that they’re in your care, and this is what we would like you to take over,” or this is... And I think at the end of the day, it comes down to communication and involving the family at the outset in that piece.

(Participant 4)

Importance of involvement and autonomy: Discussion centred on the balance between family involvement and the autonomy of residents. Advocacy emphasises centring the resident’s voice amid family and service dynamics, as families play a crucial role in understanding and supporting the individual’s needs while also ensuring the person is not overshadowed, which may lead families to feel uncertain about their advocacy capabilities.  A supportive managerial approach combined with training is mission critical to navigate these challenges, emphasising that residents’ preferences must be prioritised. The focus should be on fostering strong relationships between staff and families to ensure the resident’s best interests are upheld.

And certainly, across the entire health and social care sector, not just within the nursing home sector, that has been an issue where families will at times speak very confidently about what their rights are perceived or without any formal legal basis in which to be representing the voice of the person

(Participant 1)

And

That’s a difficult conversation to have with families when they believe that they have all the rights over their loved one in looking after all of their rights at home. So then when they come in we need to say this is a medical decision and we want your assistance.

(Participant 20)

Culture and Ethos

The discussions focused on the concept of “homeliness” in nursing homes, emphasising that it’s more about the atmosphere and culture than the physical environment or rules. While residents can personalise their spaces with belongings, the size of facilities can hinder a truly homely feel. Another argued:

... Somebody talked about the size of the nursing home, but you could have a 200-bed nursing home with six or seven different units. So, it’s not like the number of beds probably in the unit, it’s how they’re positioned, it’s the space that the resident has.

(Participant 17).

Overall, the dialogue reveals a complex interplay between regulations, cultural attitudes, and the lived experiences of nursing home residents.

Cultural and institutional barriers: Concerns were raised about the rigid application of standards. The difficulty in balancing individual rights among residents, like competing preferences for shared resources, adds to these challenges. The importance of empowering residents and ensuring their voices are heard should be supported with advocacy roles to support those without natural advocates.

There are barriers to human rights within nursing homes. You must work with many MDTs and everybody must be on the same page.

(Participant 20)

Managing risk: Awareness about the complexity of managing risks and promoting rights in nursing homes is needed. Discussions focused on the importance of building staff risk confidence in the context of accountability frameworks.  Participants critiqued the prevalent culture in nursing that prioritises safety, which can lead to overly protective measures that may inhibit residents from making their own choices.  Staff must balance their duty of care with respecting residents’ autonomy, even amid fears of regulatory implications and litigation.

Fear and Risk: Participants described a tension between risk management and the impact of fear on staff and families.  It notes that staff fear repercussions from notifications sent to the Regulator leading to a reluctance to embrace risk in resident care. There is a stigma surrounding complaints within the nursing home context, where residents may fear negative consequences, making advocacy for transparency and support in voicing concerns essential.  Participants critiqued how evidence-based assessments can sometimes overshadow personalised care.

It’s staff being afraid that families will sue, so that almost gets more important than affording the older person to make maybe an unwise decision.

(Participant 2)

Challenges for Organisational Development

Participants raised the challenges that hinder organisational development in nursing home settings. Key barriers include concerns about human rights compliance, organisational policies, and resource limitations. Participants discussed the impact of cultural influences on activities in nursing homes to a greater extent than other cultural related topics with a focus on how these influences may restrict or segregate individual and recreational activities.

There is an element of intersection of cultures because you have the organisational culture intersecting with the culture of the staff let’s say, and that creates different permutations.

(Participant 2)

Restrictive practices and their implications: Decisions about residents must involve thorough consultations with residents rather than being left to individual staff discretion.  Participants sought a more thoughtful approach to restrictions and technology use that respects resident autonomy while ensuring safety.  But it needs to have an appropriate system that builds in safeguards for people and that all the principles of the Assisted Decision-Making Act come into play, particularly resident will and preference.  Comments made by residents highlight the need for additional resources and recognition of the complex needs of residents which can hinder a person-centred approach to care.  Participants highlight a “culture of blame” that discourages risk-taking and open communication among staff, which hinders resident engagement.

In relation to the culture of blame as well in relation to the systemic and the system level, it is about the finger being pointed at you and feeling like you’ve done something wrong, even as having to do with someone takes a risk out of their own choice and then it’s a Regulation.

(Participant 18)

Religious and cultural needs: Participants expressed the importance of recognising residents’ religious and cultural needs while managing communication barriers in a multicultural environment. Emphasis was placed on the need for adequate cultural education for international staff to foster understanding of residents’ backgrounds and enhance their ability to communicate effectively.  The conversations underscore the necessity for improved communication and cultural awareness to enhance care quality in diverse nursing home settings.

We’re a multicultural society, that’s good and that’s important, but that communication piece remains very important to that population who are residing in the nursing homes. So, speaking to them in a way that’s meaningful to them I think is important.

(Participant 10)

Also discussed was the concept of a just culture in nursing homes, emphasising the importance of supporting staff and residents to express concerns and make mistakes without fear of repercussions, beyond just issues of abuse.

Often. it’s about just maybe something to do with standards or it could be something to do with the visitation policy. Some residents maybe feeling that relatives were dismissed in some of their concerns ...

(Participant 27)

Balancing human rights and communal living: Participants believed there were complex challenges in managing restrictive practices for individuals in care settings while respecting the rights of all residents, and that providers must balance compliance with regulations and standards while striving for person-centred care, which can be difficult in larger residential homes.  Risk aversion appears to be a significant issue, where the fear of negative outcomes leads to restrictive practices, prioritising safety over individual autonomy.

Other challenges would be maybe being risk averse. I think that’s one of them. And another one, fear of litigation ... It’s staff being afraid that families will sue, so that almost gets more important than affording the older person to make maybe an unwise decision.

(Participant 2)

And

You can make certain decisions, but sometimes things come down to resources, budgets, access to services, they’re all outside of, a lot of things are outside of your control ... when you’re doing your positive risk taking, you have to think of absolutely everything. Sometimes it’s more than the resident’s voice.

(Participant 20)

Sexuality and intimate relationships: Participants discussed the intersection of individual activities, human rights, and regulatory compliance in nursing homes expressing a desire for freedom in relationships, highlighting fears and monitoring restrictions that can violate human rights. They observe a cultural view that devalues the sexual rights of older adults and individuals with cognitive impairments, noting that these topics are often overlooked in caregiver training.

.... How do we monitor it {sexuality}? And that straight away, the word monitoring, that’s a restriction of someone’s human rights. Now, I know there’s reasons why, etc, but there’s a good bit of work to be done.

(Participant 29)

The need for more comprehensive training that includes discussions of sexuality and relationships throughout adulthood and aging for all staff was emphasised. Participants called for greater openness and cultural sensitivity towards sexuality in nursing home care.

I think there is work to be done around that {sexuality}, for sure, but it’s culture as well, and it’s the culture of the staff who are giving the care. A lot of our staff come from different cultures and different belief systems, and they believe in their belief systems that maybe residents are doing wrong by exploring their sexuality, regardless of whether they’re living with dementia or not. I think if people were honest and true to themselves, most people would admit that they’re afraid of that.

(Participant 29)

 Economic Challenges and Resource Limitations

Discussions highlight the intertwined challenges of finance and human rights within nursing homes.  Insufficient resources hinder the ability to provide quality, person-cantered care, indicating a need for more targeted funding in older person care compared to other sectors. It also notes the challenges of transferring residents in acute conditions and the necessity for advanced cost planning to meet evolving care needs.

I have a real fear that as this becomes more apparent and people understand it more the requirements and resource requirements will be greater.

(Participant 29)

Overall, staffing shortages, inadequate funding, and structural barriers were seen by participants as impediments to delivering effective and respectful care.

... My point is that economies of scale do matter, and if we’re merging or moving and evolving to one model, which is larger, larger, larger nursing homes, with smaller ones, I do have a concern around what the implications of that are.

(Participant 2)

Finance plays a critical role, particularly with new human rights and safeguarding laws increasing the staffing levels needed for quality care and resident dependency and complexity which can result in significant financial burdens. Innovative resource allocation, such as mobile diagnostics, was seen to enhance care while avoiding hospital transfers which can disrupt residents’ lives.

Sometimes we don’t focus on the positives because we’re focused on dealing with the issues every day. But as {participants name} has just outlined, mobile medical diagnostics is a classic example whereby historically someone is query fracture may end up in A&E having an X-ray, whereas now the X-ray machine comes out to the nursing home. So that’s a positive and we need more of that.

(Participant 25)

Discussion

Overarching findings from this research and contributions to the existing literature are presented in relation to several areas mentioned by participants.   

Human Rights: Participants sought a more thoughtful approach to restrictions and technology use that respects resident autonomy while ensuring safety.  But it needs to have an appropriate system that builds in safeguards for people and that all the principles of the Assisted Decision-Making Act come into play, particularly resident will and preference.

Discussions focused on the need for legislative reform to ensure compliance with international human rights standards, emphasising the importance of safeguards and a review process for deprivation decisions.  Research by Spencer et al. [5] explored human rights in nursing homes, understanding a Rights Based approach [6] and human rights from a social participation of residents in long term care in Australia [12].  Other approaches to human rights in nursing homes were on empowerment, restraint, consent and dying with dignity [13], ethical issues in long term care from a human rights perspective [14] and a framework for human rights in older persons [15]. 

A typology of approaches indicates the need for scholarship to evolve in human rights in older person care [16] and a research strategy on international Human Rights literature indicates a human rights-based approach [7].  Approaches were taken in relation to addressing healthcare vulnerabilities in nursing homes through Insights from human rights monitoring in two Austrian provinces [17] and residents experiences of interpersonal factors in nursing home care [18]. 

Autonomy: The centrality of person-centred care to promoting human rights is seen by participants as the most important area by emphasising a need for balance between ensuring resident safety in nursing homes and respecting their autonomy and right to make choices, even if those choices involve risks.  Discussions acknowledge that while some restrictions are unavoidable for safety, a person-centred approach is vital.  The role of emerging technologies and their potential for infringing on personal liberties was noted, with concerns about increased surveillance affecting residents’ rights.  Participants place emphasis on enhancing legislation, education, and support to protect residents’ rights and autonomy while ensuring their safety. 

Autonomy of residents in long term care in nursing homes was observed from the perspectives on how autonomy is associated with resident well-being [19-21].  This was taken a stage further in the longitudinal study exploring associations between autonomy, relatedness, and competence [22].  The balance between autonomy and risk in residents with dementia was explored by nursing home managers [23].  Care interactions viewed as supporting autonomy were observed between staff and residents with dementia [24]. A systematic review explores the influence of freedom of movement on the health of people with dementia [25].

Advocacy: The dialogue demonstrates a belief that concerns about advocacy arise when the voices of residents are overlooked due to power imbalances, leading to fears about repercussions if issues are raised.  Imbalance of decision-making power occurs when residents face disadvantages in making daily choices, making it essential to promote autonomy, access, and safeguarding. The conversation stressed that human rights in care environments should align with rights in broader societal contexts, encouraging awareness and expression among residents to address potential harm and articulate their needs, also mentioned by Curtice and Exworthy [4].

Person centred care and dignity: The dialogue demonstrates a belief that a balancing act is required between respecting personal preferences and meeting necessary hygiene needs.  End-of-life planning is also mentioned as a critical area for upholding dignity. Continuous staff education, familiar environments, and respecting personal habits are seen as essential to promoting dignity across all interactions.  Barriers also exist. Participants stress the importance of preserving residents’ dignity in caregiving, particularly for those with dementia who may exhibit challenging behaviours. Consistent, familiar caregiving enhances dignity, especially in nursing homes where staff may struggle with building relationships during periods of change.

Effective communication, planning and documentation of care decisions are crucial to respecting individual dignity while meeting requirements.  Participants note that existing regulations and institutional settings may create obstacles that hinder individualised care.  The dialogue demonstrates a belief that residents’ voices should be heard, particularly amid power dynamics involving families and staff.  Staff understanding of quality from a dignity perspective was explored [26] while participants draw attention to the need for valuing care and its workforce, as important for fostering an empowering environment in nursing homes, areas also mentioned by previous researchers [4,8].  Participants stress the need for legislative reform to ensure compliance with international human rights standards, emphasising the importance of safeguards and a review process for deprivation decisions if they arise. 

Quality of Life: Participants highlight the common perception of nursing homes as the final stage of life rather than a new chapter, noting that this view can adversely affect residents’ well-being. Attention is drawn by participants to the need for valuing care and its workforce, deemed important for fostering an empowering environment in nursing homes.  Quality of life is mentioned in human rights literature.  Nurses’ perceptions of quality and the factors that affect quality care for older people living in longterm care settings in Ireland were first explored [27] and from the perspective of what matters most to residents of nursing homes [28]. Haunch et al. (2021) in a realist view presented the staff behaviours that promotes quality for older people and Cleland et al. (2021), in a literature review, defined quality of care for older people in nursing homes [29,30].

Regulation: Participants cite significant barriers in providing person-centred care in nursing homes, primarily influenced by fear of regulatory repercussions and institutionalised mindsets.  They argue that decisions often stem from a fear of failing regulations, as notifying authorities about a resident’s concern may have serious consequences for staff by implying negligence. Participants call for a dedicated government figure, such as a commissioner for older persons to elevate the concerns and rights of older individuals, strengthening advocacy and accountability within the system.  The dialogue demonstrates a belief for nursing staff to be aware of risks involved in residents’ care and the significance of documenting these risks and the rationale behind their decisions. Participants raise concerns about compliance, duty of care, and liability dominating the organisations culture, often leading to risk aversion among staff.  This compliance focus varies from healthcare assistants to senior management, creating a tension between meeting regulatory standards and respecting residents’ preferences and autonomy [22].

Liberty Restrictions: It is acknowledged that while nursing home residents often face restrictions, their own frailty can exacerbate these limitations.  Participants agree that no nursing home is entirely free from restraint and acknowledge the necessity of certain safety measures due to risks like falls.  The discussion demonstrates a belief that advancements in surveillance technology, like CCTV and alarms, pose risks to residents’ liberties that warrant attention. Participants believe that notwithstanding these there have been significant improvements in reducing restraints, such as bed rails, concerns remain about the deprivation of liberty, especially for residents who desire different living arrangements but may not have their wishes prioritised.  Chemical restraints are also a point of contention, with inappropriate use of psychotropic medications being flagged as an issue. The conversation emphasises the need for legislative safeguards to ensure that any deprivation of liberty is examined critically and respects individuals’ preferences. Abuse was mentioned in previous studies undertaken in Ireland. Duffy et al. (2024), in a scoping review, explored abuse from the perspective of older people’s experiences of elder abuse in residential care settings [31].  The need for policy in relation to protecting residents from mistreatment and abuse and the nurses’ role in the detection of elder abuse and neglect were explored [32,33]. An exploratory study explored elder abuse in Norwegian nursing homes [34] and a broader view of abuse and neglect was taken in institutional settings [35].

Culture and Ethos Environment: The discussion demonstrates that cultural factors, including the integration of a diverse workforce unfamiliar with nursing home environments, and the barriers of language and understanding, complicate care delivery and respect for residents’ rights.  For example, participants identify barriers to person-centred care, including communication and collaboration among multidisciplinary teams, families, and residents.  A strong service culture, backed by management commitment and adequate resources, is deemed essential for fostering a person-centred approach. Participants argue that maintaining dignity becomes harder when staff turnover is high, impacting resident-caregiver relationships.

Addressing perceived neglect is complex, as individual preferences can conflict with personal care needs, which are critical for preventing neglect. Documenting decision-making processes regarding personal care preferences is an essential tool in changing perceptions.  Maintenance of patient integrity in long-term institutional care was explored [36].  Barriers to ethical nursing practice for older adults in long-term care facilities were also considered [37,38]. It is argued that while residents may have staff supervision, they should retain control over their choices, such as daily routines and personal freedom [39].  Human Rights and the confinement of people living with Dementia were explored [37,39]. A survey of residents, family, and staff explored the palliative care experience in Irish nursing homes during the COVID-19 pandemic [8]. The perspective of ageing and spiritual care was mentioned [40].

Sexuality and intimate relationships: Participant discussions highlight challenges faced by nursing homes in Ireland regarding the understanding and acceptance of residents’ sexuality. The need for more comprehensive training that includes discussions of sexuality and relationships throughout adulthood and aging for all staff is emphasised.  Participants call for greater openness and cultural sensitivity towards sexuality in nursing home care. 

Concerns arise from cultural differences among staff, with some believing that exploring sexuality is inappropriate, even among residents with dementia.  Despite discussing sexuality openly among colleagues, there remains fear associated with monitoring residents’ relationships, which can infringe upon human rights for older people and those with cognitive impairments. There is limited discussion in the literature on sexual expression of nursing home residents. Of note is the systematic review of the literature undertaken by Aguilar [41].

Organisational Culture: Participants express the view that an element of intersection of cultures often exists because the organisational culture is intersecting with the culture of the staff and this creates different permutations.  The notion of “homeliness “was mentioned by several participants as being the ideal culture to strive for in nursing homes. Heward et al. [42] promote a resident environment that has a “Homely Feel…” Participants also argue that nursing home residents are often frail, needing medical equipment, which complicates the notion of homeliness. 

A cultural shift is deemed necessary to uphold human rights in this setting, particularly respecting the autonomy of older residents [30]. In balancing human rights and communal living participants believe there are complex challenges in managing restrictive practices for individuals while respecting the rights of all residents [43], and that providers must balance compliance with regulations and standards while striving for person-centred care, which can be difficult in larger residential homes [64].  Participants concern about compliance, duty of care, and liability dominate the organisational culture, often leading to risk aversion among staff. The challenge of balancing individual preferences in communal settings, where the choice of one person might disrupt another’s, further complicates the issue.  A cultural shift towards more person-centred care that respects dignity while addressing legal and safety concerns is needed [64].

Resource and budgetary constraints: Participants believe that economic challenges are significant with issues around funding and the structural support necessary for providing high-quality care [27]. Organisational barriers such as budget constraints and resource limitations further complicate efforts to uphold human rights in these settings [43].  Participants underscore that while the economic model influences care provision, there are also non-monetary factors involved.  The funding disparities between public and private sectors further complicate access to essential services, like occupational therapy and specialist treatments. Overall, staffing shortages, inadequate funding, and structural barriers are seen by participants as impediments to delivering effective and respectful care [5]. The lack of resources was seen as impacting the ability to provide personalised, respectful care, which diminishes staff morale and can lead to poor organisational culture. Conversations underscore the need for better funding strategies and resource allocation to improve older care services including safeguarding. The quality and cost of care in nursing homes are critically dependant on macroeconomic conditions and are linked with demand and availability of all grades of nursing staff

[47-48]. Several participants emphasise the inherent imbalance of decision-making power in these settings.  Innovative resource allocation, such as mobile diagnostics, are seen to enhance care in a positive manner while avoiding hospital transfers which can disrupt residents’ lives. Economic challenges, particularly related to funding and staffing, hinder the development of nursing homes. Participants believe that the funding model for nursing homes lacks a person-centred approach, focusing instead on economies of scale, leading to larger facilities as they aim to remain financially viable.

Religious and cultural needs: The conversation underscores the necessity for ongoing cultural competency training and support systems to empower staff and respect residents’ rights and preferences [43].  Participants note that cultural issues are complicated by the intersection of two cultures: that of the organisation and cultural diversity amongst staff.  Also discussed was the concept of a just culture in nursing homes, emphasising the importance of supporting staff and residents to express concerns and make mistakes without fear of repercussions, beyond issues of abuse. The perspective of ageing and spiritual care was mentioned by Mackinlay [40].

Family Involvement and Communication: Staff often struggle with balancing family input and residents’ autonomy, especially when conflicts arise. Concerns were raised by participants about blanket approaches to activities and food, indicating a need for greater person-centred care [3,29]. Participants discuss the need for education and dialogue involving families to help them understand the rights of residents and the delicacy of decision-making in care. Overall, enhancing relationships and communication between caregivers and families are deemed essential for improving care outcomes for residents [43]. Discussion identified a legitimate apprehension about family involvement, as families may overestimate their rights without formal authority. Staff may hesitate to challenge family views due to fear of complaints or repercussions, illuminating the need for support from management or advocates.  A cooperative relationship is ideal. Engaging families early in the assessment stage may foster a clearer understanding of care limitations and governance issues, ultimately enhancing cooperation [5].  Advocates may be needed to represent the resident’s interests and navigate these complexities, especially when family involvement risks jeopardising placements.

The dialogue highlights the need for comprehensive documentation of risks taken and the rationale behind them.  Moreover, participants cite a need for an approach involving residents in decision-making about their care, despite the pressures from family expectations and healthcare norms.  The dialogue reflects tension between regulatory compliance and the reality of facilitating positive risk-taking in a supportive environment, underscoring that individuals maintain the right to make personal choices, even if those choices come with risks. Participants discussed a spectrum of risk aversión-from decisions that prioritise safety to genuine concerns for resident wellbeing-identifying this as a significant barrier to achieving person-centred care [64].  It is noteworthy that a cluster analysis of the word ‘fear’ identified a pattern in the data showing how often fear was preceded or followed by litigation: Combinations of fear of litigation, fear of regulation, fear of speaking up, fear of implications of speaking up. Participants believe that this is an area meriting further attention.

Challenges for organisational development: The dialogue demonstrates the belief that cultural norms can limit residents’ rights and individuality by highlighting issues like the economic constraints faced by facilities and the varying cultural backgrounds among residents and staff. Effective communication and understanding of Irish culture were emphasised as essential for staff, particularly given the diverse nationalities present. Challenges included regulatory expectations versus practical realities, where desires of residents (wants to visit a beach) may be deemed unreasonable due to logistical issues.  Participants believe there is a call for structural changes to break down institutionalised practices and resist “this is how we’ve always done it” mentalities.  The need for legislative reform was stressed to ensure compliance with international human rights standards, emphasising the importance of safeguards and a review process for deprivation decisions.  While staff aim to provide the best care possible, systemic constraints, including government policies and funding issues, complicate their ability to fulfil this goal and can negatively impact on staff, managers, residents and families alike.

Education and training: The discussion highlights participants express fears of litigation or condemnation from regulatory bodies that can sometimes inform decisions in the context of personcentred care.  Participants also stress the need for a systemic approach to improving care quality and uphold human rights consistently across nursing homes [28,29]. Understanding and implementing dignity requires training and awareness among staff.  Participants stress the necessity of continuous staff training and education to effectively understand and apply human rights principles in nursing home care contexts. Acknowledging that the diverse needs of residents is crucial, as is providing proper staff education on human rights.

Managerial challenges: The discussion highlights several management challenges particularly regarding the role of management, staffing, financial constraints, and the impact on resident care. Participants emphasised a need for adequate resources to deliver person-centred care, as insufficient staffing can lead to agency loss for both residents and staff, potentially resulting in human rights breaches.  Economic challenges, such as limited funding impact staff morale and retention which in turn impacts the quality of care provided.  Overall, the dialogue demonstrated a belief by participants of the need for improved resource allocation and a focus on maintaining quality care and residents’ rights and in developing rapport with residents.  Discussion focused on the social dynamics affecting day-to-day care in nursing homes, emphasising how issues like poor management responses to staff concerns, should they arise, can erode service culture, reduce advocacy and lead to human rights breaches.  Overall, the group called for improved organisational practices, better funding models, and support for continuous staff development to enhance both resident care and staff retention. 

Conclusion

This study offers important insights into how human rights are perceived, experienced, and implemented within nursing homes in Ireland.  Focus group discussions were structured around key questions concerning the meaning of human rights in care settings, how these rights can be integrated and realised, and the cultural and social factors that influence their application. A strong emphasis was placed on person-centred care, framed through principles such as empowerment, dignity, autonomy, safeguarding, advocacy, and respect for residents’ choice and preferences.  Participants highlighted the need to shift the perception of nursing homes from being a final stage of life to a meaningful and valued phase, calling for approaches that are individualised and empowering. The findings reveal tensions between supporting individual rights and operating within existing regulatory and institutional frameworks. Concerns about potential litigation and scrutiny from regulatory bodies were seen as barriers to the delivery of truly person-centred care.  Similarly, family expectations were recognised as a factor that can facilitate or complicate person-centred decision-making for both residents and staff.

A key contribution of the study is the recognition of the need to move from a risk-averse medical model to a rights-based personcentred approach- one that actively involves residents in decisions about their care, even where those decisions may involve risk. Training for staff on human rights and the Assisted DecisionMaking (Capacity) Act were identified as essential, along with raising awareness among residents about their rights and how to express them. Overall, the study highlights the need for a broader cultural shift, supported by regulatory reform, to improve the human rights environment in nursing homes.  It brings attention to the current challenges of resourcing and regulation while offering a foundation for building more consistent, rights-based, personcentred care practices across the sector.

Acknowledgements

The Faculty of Nursing and Midwifery researchers and NHI wish to acknowledge the contributions of individuals and services who contributed their time and expertise, in participating in the focus groups, and identifying the essential elements for the delivery of Human Rights in nursing homes for older persons in Ireland. This research was supported by Nursing Homes Ireland (NHI), whose guidance and contributions to the conceptual and on-going development of this research are acknowledged.  The researchers also acknowledge the work of Dr.Toni Owens and Ben Meehan, QDATRAINING Ltd., NVivo for transcription and analysis of data. 

Study-Limitations

Whereas the study included a wide range of professional perspectives from several different stakeholder type, gathered from 29 experts, with considerable levels of experience in the nursing home sector, the views expressed in these focus groups are not generalisable and may not reflect the entire body of professions involved in nursing homes.  However, as the focus group interviews followed the evidence already generated from the evidence review (Spencer et al. 2025) the researchers developed a list of aspects/ questions or issues from this evidence to focus on. The voice of residents was not included in the discussions. 

Funding

This research was commissioned and funded by Nursing Homes Ireland (NHI), Ireland.

Ethical approval

Approval to undertake focus groups and transmission and analysis of recorded data was obtained from the Ethics committee of RCSI.

Conflict of interest

Researchers report no conflict of interest exists.

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