Abstract
Introduction
Huntington's disease (HD) is an autosomal dominant neurodegenerative disease characterized by involuntary movements, behavioural and mental changes, as well as cognitive deterioration. 1 HD is a progressive disorder that ultimately leads to complete dependency in daily life and, finally, death within approximately 15–20 years after onset. The average age at onset is between 30 and 50 years, and the prevalence in the Caucasian population is 5–10 per 100,000. 1
The disease course can be divided into three clinical stages of functional decline. In stage 1 patients are still independent in Activities of Daily Living (ADL). In stage 2 they become more dependent on others, and in the last stage (stage 3), patients are completely dependent and may become bedbound. In the first two stages, patients usually live at home, supported by their family, and may receive multidisciplinary homecare.2,3 In the last stage, intense 24-h care is needed and moving to a nursing home becomes unavoidable in many cases. 4
Impairment of mobility, cognitive deterioration, caregiver burden, 5 and behavioural problems play an important role in the admission to a nursing home.6,7 HD patients are usually admitted to a nursing home at a considerably younger age (55–59 years)8,9 than regular nursing home residents (83–86 years).10,11 A substantial number of these HD patients have only recently stopped working, have partners who are in employment and children who are growing up. Therefore, they may have different care needs to other nursing home residents. Furthermore, they often become dependent in physical, emotional, and cognitive domains at the same time. This requires specialized and highly qualified care.8,12
In the Netherlands, this unique care is concentrated in seven HD specialized nursing homes. 13 In these nursing homes, care is provided by a multidisciplinary team that meets an HD competency profile, and is chaired by the care of the elderly physician. A neurologist and psychiatrist with HD expertise have a consultative role within the multidisciplinary team. In addition, each nursing home is obliged to have a minimum of ten residents, comply with HD care programmes and follow guidelines to meet nationally established care criteria. 14 In other countries, the overall structure of long-term care and availability of specialized HD nursing homes may be different from the Netherlands. 15 Therefore, HD associations usually help patients and their families to find the most appropriate long-term care facility. 16
In general, quality of care (QoC) is assessed on a structural basis using quantitative approaches. Examples of indicators from the Dutch national quality framework 17 are ‘medication errors’, ‘use of restraints’, and ‘attention to eating and drinking’. 18 Although these measures provide insight into relevant ‘clinical’ care outcomes, they fail to differentiate between diagnoses, target groups, or types of nursing home settings. Also, these quantitative methods have a limited ability to capture the patient perspective, therefore giving limited information how care is experienced by the resident. 19
The past few years, there has been a global culture shift regarding QoC measurements, with increased attention for ‘softer’, more holistic instruments to measure QoC. This shift involves a greater focus on the well-being and dignity of individual patients, placing person-centered care more at the forefront. 20 This also aligns with the core values of palliative care principles. 21 This more qualitative approach to get insight in QoC, may be particularly beneficial for late-stage HD residents. 22
In the context of person-centered care, narrative methodologies 23 have been developed to measure QoC based on a more qualitative approach and based on personal experiences of care by residents and their (in)formal caregivers. These assessments, which are based on interviews and observations, are generally used and validated in regular nursing home residents. However, there are no validated methods for assessing the experienced QoC focusing specifically on HD nursing home residents. 24
Therefore, we aim to gain insight into what is important in QoC from the perspectives of residents of HD specialized nursing homes. Our ultimate goal is to develop an assessment scale for the quality of care experienced by HD residents living in a nursing home.
Materials and methods
Design
This qualitative, explorative study with a phenomenological approach used semi-structured interviews with HD nursing home residents. Individual interviews were chosen to give the residents the opportunity to tell their stories. Throughout the study, the Standards for Reporting Qualitative Research (SRQR) checklist was followed. 25 The study protocol was approved by the Ethics Committee of Maastricht University Medical Center, Maastricht, the Netherlands (METC 2020-1517).
Participants
Eligible participants were nursing home residents, aged 18 years or older, diagnosed with HD, and living in a specialized HD unit. Participants were excluded if they were unable to communicate verbally. Demographic and socio-economic status were not exclusion criteria. Due to the vulnerability of the target group, we did not specifically focus on the diversity of participants.
Participants were recruited from three Dutch nursing homes specialized in HD care; Atlant, Apeldoorn (n = 62), Mijzo, Raamsdonksveer (n = 51), and Land van Horne, Weert (n = 25). These nursing homes were selected on the basis of being acknowledged by the HD Knowledge Network Netherlands (HKNN). In compliance with nationally established care criteria 14 these nursing homes are able to provide specialized care to HD residents. Potential participants living in these nursing homes were identified and informed about the study by a formal caregiver of the participating organization. They received an information letter.
If residents were interested in participating, the first author invited them to participate in an interview. We included a total of 15 participants in order to gain data saturation, 26 aiming for five participants per nursing home to capture a comprehensive representation of perspectives. Written informed consent was given by all participants, and verbally checked at the start of each interview.
Topic list
Each interview started with open-ended questions, giving the residents the opportunity to indicate what they considered important when it comes to QoC. Subsequent interview questions were guided by a topic list. The topic list was formulated in order to gain information about what residents identify as crucial elements for assessing QoC. Its purpose was not to capture the residents’ direct experiences with the care they are currently receiving.
The topic list was based on QoC domains identified in a review regarding existing QoC measurement methods for nursing home residents with early-onset neurodegenerative diseases. 24 This resulted in the following eight domains; ‘emotional support’, ‘physical support’, ‘social support’, ‘care’, ‘care content’, ‘expertise’, ‘communication’, and ‘organization of care’. We formulated relevant questions that matched the content of each domain. We subsequently rephrased them into a language understandable for the residents. Each interview ended with an open question to give participants the opportunity to add topics.
To ensure completeness of the topic list, the eight domains were compared with the domains of one generic quantitative questionnaire for the assessment of QoC in general nursing home residents (CAHPS nursing home survey) 27 and one quantitative questionnaire for the assessment of Quality of Life in HD nursing home residents (HD health-related quality of life questionnaire). 28 The comparison was conducted by two authors independently (JH and BB). No additional domains were identified based on the comparison.
Data collection
All interviews were conducted by first author JH, who is a trained interviewer and healthcare professional specialized in the care for people with HD. Interviews were audio-recorded and executed face-to-face in the participant's room in the nursing home. Interview questions were adjusted to simplified and clear language if needed. Participants were allowed extra time for responses, as they may take longer to process questions and to formulate answers. Answers were repeated by the interviewer to ensure understanding. The interviews had no time restriction.
Basic demographic characteristics were collected from each participant. These were age, gender, and number of years living in the HD residence. The Total Functional Capacity Scale (TFC) (range 0–13) of the Unified Huntington Disease Rating Scale (UHDRS) 29 was used to determine the disease stage and was scored by a formal caregiver of the resident. Educational level was classified using the International Standard Classification of Education (ISCED). 30
All interviews started with the open questions: ‘How do you like living here?’ and ‘What do you think of the care you receive?’. All domains of the topic list, mentioned in the previous section, were covered in the interviews. With each question, the opportunity was given to raise additional topics. Each interview ended by asking the participant if there was anything else they wanted to add.
Analysis
All interviews were transcribed verbatim and analyzed using reflexive thematic analysis, 31 with Atlas.ti (version 23.1.1.0). Throughout each stage of the analysis, detailed notes were recorded to maintain a transparent and systematic process.
First, all transcripts were read for points of interest and coded directly within the text fragments in an open coding process (JH). To ensure inter-coder reliability, a comparison was made (JH and IE) of the first 25% of the open codes of one HD patient transcript, until there was full agreement. The remaining transcripts were similarly coded by JH. Second, the open codes were then used to create categories and establish connections (axial coding). Third, selective coding was employed to identify emerging themes that captured the core essence of the participants’ experiences. The coding process was iterative, and the content was discussed within the research team. Recurring themes were categorized into major and minor themes. 32
Results
Response
Participants were spread approximately equally across the three nursing homes, with four participants from one, five from another, and six from the third nursing home.
The 15 interviews were conducted between November 2022 and February 2023 and lasted on average 40 min. (range 18–67 min.). Twelve HD participants were interviewed individually. During one interview, the informal caregiver was also present and two participants were interviewed together, at their request. Basic demographic characteristics of all participants are given in Table 1.
Background characteristics of participants.
HD: Huntington's disease; TFC: Total Functional Capacity Scale; ISCED: International Standard Classification of Education.
During data analysis, no new themes or subthemes emerged from the last set of interviews, indicating that data saturation was achieved. It suggests that additional data would not contribute to new insights, providing confidence that the study captured the major results.
Residents’ interviews
The analysis of the interviews revealed four broad domains that influenced quality of care experienced by residents: (1) Experiences with Care and Daily Living, (2) Experiences with Living Environment, Autonomy and Well-being, (3) The Role of Formal Caregivers, and (4) Fellow Resident Interaction. Each domain can be divided into several items (Table 2). We present the key findings from each domain, supported by quotes from the residents with HD.
Overview of domains and items on Quality of Care for Huntington's disease residents.
Domain 1. Experiences with Care and Daily Living
The first domain ‘(1) Experiences with Care and Daily Living’ shows the topics residents indicate as important in the context of care and daily living, such as satisfaction with meal quality, support in daily activities, and the significance of a structured daily routine.
Eating and customized nutritional consistencies
Residents reported the importance of meal quality and were generally satisfied with the current meal choice and preparation. Considering that weight loss is a prevalent symptom of HD, some residents highlighted the importance of maintaining an adequate caloric intake. Interviewees stated increased food consumption due to choreatic movements and appreciated the guidance provided by formal caregivers in this regard. ‘Struggling to eat 4000 calories each day……they think along well…….At home I always ate a large dessert after dinner, and that's what I get here too’ (Resident A).
Formal caregivers are trained to address swallowing difficulties and are prompt in responding to situations where residents may be at risk of choking.
Experiences with daily activities
Residents mentioned experiences with both ADL and Household Daily Activities (HDL). Regarding ADL, residents reported receiving varying degrees of support from formal caregivers. Tasks such as showering, brushing teeth, getting dressed, and assistance with putting on jewellery were mentioned. Maintaining autonomy in care tasks for as long as possible is important to residents, who mentioned that they try to do as much as possible by themselves. In general, residents expressed a high degree of satisfaction with the care they received, indicating no areas in need of improvement. ‘In the beginning it took some getting used to getting help with showering, because you feel powerless, and physically I cannot get out of the wheelchair, I just can’t……the dependency on caregivers…..but now, after a year and a half I say okay, they are coming to help me shower, yes’ (Resident C).
The majority of residents expressed gratitude for retaining their mobility and the ability to move freely. Several residents emphasized the crucial role of daily (outdoor) walks in preserving their mobility and in interacting socially. For residents who can no longer walk safely, learning to use an electric wheelchair becomes an essential skill. ‘I did get a wheelchair, but I fell a few times, yes, unfortunately, but they have now trained me to use the wheelchair, so let's learn in advance’ (Resident B).
‘And on Tuesday and Wednesday [there are activities in] the garden, now nicely mixed with the things that I do myself and then things that they offer. So that's very nice, yes, so the week is well-filled [with activities]’ (Resident D).
Some residents mentioned occasional moments of boredom and the need to fill their time. Sometimes this was due to the variations in the quantity of activities, for instance between weekends and weekdays. For a few, boredom arose from the lack of continuous one-on-one attention.
‘Normally I stay here [dining room]…sometimes just sitting there. To pass the time a bit’ (Resident E).
Experiences with daily structure
Establishing and maintaining a daily structure was of utmost importance for most participants. Having a predictable routine with set times provided stability and guidance throughout the day or week. The majority of residents required daily assistance from formal caregivers to maintain this structure or were encouraged to use a schedule to oversee their weekly activities. A few residents were capable of and preferred managing their schedules and daily structure independently, using their own agenda to keep track of appointments. ‘[The most important aspect of care is] well that you know that things are structured, that you know when things are…….that structure is nice and it also provides support, yes’ (Resident D).
‘And what may also be important for others and me, is that I have my own daily schedule, so to speak. So for example, I get my medication and yogurt at 9 in the morning and then I sleep until half past 11. And in some homes they all have to get up at 8 o’clock’ (Resident F).
Additionally, three residents specifically mentioned the timing of evening meals as an aspect on which they had limited individual choice.
Domain 2. Experiences with Living Environment, Autonomy, and Well-being
The second domain ‘(2) Experiences with Living Environment, Autonomy, and Well-being’ marks the importance of autonomy in decision-making about living space and personal activities, contributing to the residents’ sense of being themselves and feeling at home. Expressing preferences and consciously choosing to live in a specialized nursing home are important for the QoC of residents.
Feelings about living and living space
One resident initially had negative feelings about living in the nursing home, though these sentiments improved over time due to an improvement in the relationship with formal caregivers. However, all other participants unanimously expressed positive feelings about living in the HD nursing home because of the experience with the care they received. Two residents even highlighted the relaxation they found in living in the nursing home, free from arguments and disruptions they had experienced at home, due to the environment created by formal caregivers. ‘It was quite difficult at first [during admission], adapting and acceptance….. I’ve run away from here a few times. I didn’t want to be here anymore…..And now I don’t run away. I’ll call if there is anything right now….[because the] contact with the caregivers has improved’ (Resident E).
Without exception, residents appreciated having their personal space they could furnish to their liking, either independently or with the assistance of family and friends. Many residents expressed satisfaction with the environment. It is important for residents to make their own choices about certain aspects of their living space, such as using their own bed instead of a high-low care bed for as long as possible. Some interviewees mentioned sharing a bathroom with fellow residents, which was not an issue if they were residents of the same gender. Others were delighted to have their own toilet and shower facilities.
Feelings of autonomy and feeling at home
Residents emphasized the importance of having the ability to do their own thing and be themselves. This means, for example, being able to make choices about whether to sleep in in the morning, or having a pet. In all three nursing homes, residents indicated that they could generally express their preferences. Caregivers made an effort to consider them, within their possibilities. Most of these preferences are about mealtimes or indicating food choices, while others are about the care they receive; the way of providing care or the option to decide sleeping time. ‘Yes, exactly, because they do that [take wishes into account] very well. They always ask, very carefully, what my preference is, and they act accordingly’ (Resident D).
‘Because you don’t have to pretend to be better. Here I can just be myself, and everything that comes with my disease is accepted. That's what makes me feel so good’ (Resident G).
Family support and specialized care
Most residents commented on the importance of regular visits, primarily from family members such as partners, (grand)parents, siblings, or (grand)children. Some did not mention fixed appointments with family or friends. Several residents shared their experiences of having the opportunity to leave the nursing home for (regular) home visits to spend time with their families. Some residents required assistance from formal caregivers to arrange these visits or coordinate phone calls.
A large part of the participants indicated that they were initially admitted to a temporary room in the nursing home for a trial period before permanent admission. This transitional phase served to ease the process of permanent admission, as residents had the opportunity to become familiar with their surroundings and establish connections with formal caregivers. ‘At first, I was just on holiday [temporary admission] for a week and then all of a sudden, I thought: well, I like it here. And I’ve been here ever since’ (Resident H).
Domain 3. The Role of Formal Caregivers
Within the third domain ‘(3) The Role of Formal Caregivers’, a crucial part is the competences of formal caregivers about HD care and all of its aspects. Also, preferences in age, gender, and familiarity of formal caregivers, as well as the availability of caregivers are important aspects considering the QoC. Residents highly value open conversations, with respect and compassion, between caregiver to resident. The importance of conversations about advance care planning are underscored.
Knowledge and competences of caregivers
The majority of residents emphasized the crucial role of experience and knowledge of HD in formal caregivers. They believed that this expertise was essential for providing appropriate care. ‘Knowledge about HD is necessary because otherwise, they cannot deal with it. And that's a difficult disease, Huntington’ (Resident E).
Preferences in caregiver characteristics
Residents mentioned having preferences regarding the age, gender, and roles of formal caregivers, which they experienced as influencing the quality of care they received. One resident expressed discomfort with very young caregivers due to the large age difference. Another resident expressed a preference for a formal caregiver of the same gender to assist with personal hygiene. One resident mentioned that some caregivers are not qualified to perform certain actions, such as supporting with eating, making it difficult for caregivers to cover all the tasks.
The residents also expressed varying opinions on the familiarity with caregivers. Most of them preferred familiar faces for longer periods, while a few found the presence of new caregivers or interns interesting. ‘In the beginning, it was weird that someone helped me shower, but now I’m used to it. It's someone different every week who helps me, but all familiar faces…. I like it when there's an intern. A bit of teasing, a bit of nonsense. New faces are fun’ (Resident I).
‘The most important thing is that they are simply there 24-7. Even at night when you push the alarm button, someone is there’ (Resident J).
Communication, respect, and compassion
Conversations with formal caregivers were highly valued by many interviewees. The importance of someone showing interest or being available for one-on-one conversations was emphasized. Additionally, they liked the group conversations (with caregivers and fellow residents) during social gatherings, such as coffee breaks. Every resident has a designated contact person responsible for his or her care, which is appreciated by residents.
Participants emphasized the availability of formal caregivers for open conversations on a wide range of topics. They underscored that various issues were open for discussion, from challenging situations that weighed on their minds, such as incidents in the unit or complex personal matters, to subjects that are more light-hearted. The consensus among residents was that almost anything could be discussed, although residents had specific preferences for discussing different topics with particular caregivers. Others were comfortable discussing anything with anyone. ‘If something happens that is a bit annoying, then we discuss it with the nurses. Or if I think of something that doesn’t want to get out of my head, then I also talk to them’ (Resident E).
Most residents emphasized that caregivers consistently showed compassion and respect toward them as individuals. They felt they always received attention and commitment from the caregivers, which was evident in their interactions. ‘[They have respect and sympathize with me], yes, definitely. For example, just grabbing my shoulders or a tap on the back, things like that’ (Resident K).
‘If there is a funeral….they will stand next to the coffin to guide it, right? I did not know that was possible, did I? (Resident E).
Discussing future perspectives and advance care planning
In the Netherlands, nursing home residents have the opportunity to engage in discussions with family and caregivers about advance care planning, including the possibility of euthanasia. This subject was addressed in the interviews by residents mostly from one nursing home, underscoring the importance of such conversations about euthanasia and end-of-life care. ‘I want euthanasia, for example, and at this moment I am still mentally competent, and then we have a conversation with the physician every six months, so yes, very important topics’ (Resident B).
‘I will live here, maybe I will live here until my last days, so then you also have to think, yes, I want to do that, I should also, keep in contact with the caregiver’ (Resident L).
Domain 4. Fellow Resident Interaction
The fourth domain ‘(4) Fellow Resident Interaction’ highlights the impact of positive (recognition and relief) and negative (confrontation, verbal and physical aggression, decline in health) experiences with fellow residents on the QoC of residents. Additionally, communication challenges among fellow residents play a role in determining the QoC for residents.
Positive experiences with fellow residents
All interviewees regarded their fellow residents as an important factor influencing their experiences living in the HD nursing home. The majority of residents expressed positive experiences regarding their interactions with fellow residents, highlighting the importance of this contact.
Many residents stressed the importance of activities with fellow residents, including drinking coffee in the restaurant or in the unit, watching television, or playing games together. One resident even emphasized that contact with fellow residents was the most crucial aspect of care.
Residents discussed the sense of recognition and the relief of not having to explain what is happening, as everyone is going through the same experience. ‘Yes, you don’t have to explain, everybody has the same’ (Resident A).
Negative experiences with fellow residents
Some residents emphasized that living with fellow residents with the same disease and feeling recognition was sometimes extremely confronting. ‘If you see someone [being fed]…., you think I will soon have to be fed……that confrontation, because you see where the disease is going’ (Resident C).
‘The first incident I experienced; I was beaten by a fellow resident. And in my entire live, I have never been hit….. I had quite a bit of trouble processing that for a few days’ (Resident J).
In such cases, interviewees expressed the importance of caregivers explaining what had happened and how such behaviour had been triggered.
‘And they ask us, for example, if that happens, to go to your own room and close the door. Because, instead of dealing with one crisis, they could have multiple crises, because residents panic or try to get involved with it or whatever. Because at that moment, you don’t know why that single person is freaking out completely. So…‘ (Resident J).
The impact of interventions during aggressive episodes of fellow residents, such as providing compulsory treatment (e.g., administering sedative medication when a fellow resident shows aggressive behaviour) is experienced as high. Furthermore, residents talked about practical effects of fellow residents’ behaviour, such as locking refrigerators and cupboards or experiencing the disappearance of kitchen supplies. Seeing fellow residents decline in health is impacting residents themselves. In the interviews, death and saying goodbye to residents, including the associated changes, were discussed.
‘One man has just died, with him I also played games, cards and so on. But yes, unfortunately he just passed away last week’ (Resident D).
Communication challenges with fellow residents
Another item covered difficulties in communication with fellow residents arising from the effects of HD. The overall opinion was that most fellow residents in the unit are not able to communicate, or at least cannot participate in a conversation. ‘Well, it is very confronting because there are seven people who can barely communicate anymore, so I find that difficult because I am still quite good verbally, and there is only one here with whom you can talk, so it is sometimes too quiet here’ (Resident J).
‘They [other residents from the unit] spend a lot of time in bed. You don’t see the rest. I’m going to the living room anyway, but yes, you’re alone there. And then I go to the other living room’ (Resident M).
Discussion
This study was the first study that conducted interviews with patients in an advanced stage of HD about their perceived QoC. Four key domains emerged as crucial for residents’ perceptions of care quality; (1) ‘Experiences with Care and Daily Living’, (2) ‘Experiences with Living Environment, Autonomy, and Well-Being’, (3) ‘The Role of Formal Caregivers’, and (4) ‘Fellow Resident Interaction’.
This study underscores the importance of knowledge and competences of caregivers, as well as communication, respect, and compassion, for the QoC residents experience in an HD specialized nursing home. These findings align with our previous research on the assessment of QoC by nursing home residents with early-onset neurodegenerative diseases. 24 Yet, a notable difference lies in the emphasis on the influence of fellow residents on the perceived QoC of residents in this current study, a dimension only briefly mentioned in the previous review. The impact of fellow residents is acknowledged in studies that focus on qualitative data about the patient perspective on living in a nursing home, among residents with dementia33,34 and regular nursing home residents. 35 However, we did not see this reflected in quantitative questionnaires, where the effect of fellow residents on the QoC of nursing home residents might be underestimated. Furthermore, some items from the review, 24 such as ‘budget’ and ‘planning’, were not mentioned by residents in our study. The reason could be that in the review formal and informal caregivers were taken into account, while in the current study we only focused on residents.
A notable finding is that residents did not mention their informal caregivers frequently in the interviews, as this is different in regular nursing homes. However, this may align with the reduced social cognition found in HD 36 and the impact HD has on family relations. 37
When looking at studies about Quality of Life (QoL), instead of QoC, common themes emerge. QoL and QoC share many overlapping themes and may be intertwined, partly due to the evolving conceptualization of QoC, where the emphasis is on experiences and relationships, which makes QoC a more individualized concept. 38
When comparing our findings with existing research on QoL in HD patients living in a specialized nursing home by Engels et al., 39 most results overlap. Themes such as the preservation of identity and autonomy, the significance of daily activities, and the qualifications of nursing staff align with key themes in our study. A difference lies in the fact that the study by Engels et al. mostly emphasized the impact of the relationship between patients and nurses on well-being and QoL, while our study highlighted the role of fellow residents as almost equally important as the role of formal caregivers in perceived QoC. This is in line with recent views on relationship centred care approaches in which the relationship between all stakeholders should be considered. 40
The strength of this study is that HD residents provide a comprehensive view of their experiences of QoC. Moreover, we were the first to explore the perceptions of QoC among patients in the advanced stages of HD. Furthermore, to ensure a high level of credibility in our study we used a carefully developed and evaluated topic list, based on existing literature and comparison with other relevant questionnaires. In addition to using the topic list, we gave participants the opportunity to raise additional topics that were important to them.
A limitation of the study was the recruitment of eligible participants and verification of inclusion criteria by a contact person from the nursing home, potentially introducing selection bias due to their knowledge of potential participants. However, it was assumed that residents’ willingness to participate does not significantly impact the data, as compared to those who choose not to participate. Furthermore, some residents were difficult to understand verbally. To overcome this, the interviewer repeated patiently their answers during the interview, seeking confirmation to record responses.
Inherent to the type of research, the group of participants were mostly residents with no or mild speech impairment, which does not make them fully representative of the entire resident late stage population. Most residents with adequate communication skills were also capable of managing most self care tasks autonomously. This possible skew in the participant demographics and functionality level could have impact on the results, as the level of assistance from formal caregivers might be less for those with better communication skills and greater autonomy, compared to residents with limited communication skills and mobility. Despite this limitation, the current results provide a valuable starting point for understanding the perspective of residents.
Implications for practice
Important domains are described that capture the residents’ perspective regarding their QoC. These domains can be used as practical guidance for nursing home professionals involved in the daily care of residents with HD. In particular, attention to the interaction between residents and the maintenance of knowledge and competences related to HD can be significant in the day-to-day work of nursing home professionals.
Implications for research
Currently, there is no specific, validated method for assessing the experienced QoC by HD nursing home residents. Further research is needed to develop a more tailored way to measure QoC for this specific patient population, potentially through an intervention based on the identified domains. Moreover, we recommend additional research to include the perspectives of both formal and informal caregivers on the QoC of residents residing in an HD nursing home. Also the inclusion of residents that are unable to communicate verbally in future research designs might be beneficial to capture the whole spectrum of the advanced-stage resident's perspective.
Conclusion
In conclusion, our study provides insights into the domains that nursing home residents with advanced HD consider crucial for their perceived QoC. The experiences of residents are shaped by satisfaction with daily activities, autonomy, caregiver knowledge and competences, and fellow resident interaction. The inclusion of fellow resident interaction as a distinct domain, differentiating ours from other studies, enriches the understanding of the complex dynamics influencing QoC in the HD nursing home.
The main results may be of interest to nursing home professionals working with HD residents, as they highlight domains that are important from the residents’ perspective. This understanding enables caregivers to intervene in these domains.
We recommend further research to include the perspectives of both formal and informal caregivers on the QoC of residents residing in a HD nursing home. Additionally, we suggest developing a more tailor-made way to measure QoC for this patient population, which is based on the identified domains.
Footnotes
Acknowledgments
We would like to show our gratitude to all residents who volunteered to participate in this study.
Funding
The authors received no financial support for the research, authorship, and/or publication of this article.
Declaration of conflicting interests
University Maastricht and the Academic Hospital Maastricht, with MO as inventor, have submitted a patent application EP23197746. RR is an Editorial Board member of this journal, but was not involved in the peer-review process of this article nor had access to any information regarding its peer review.
Data availability
The data supporting the findings of this study are available on request from the corresponding author. The data are not publicly available due to privacy or ethical restrictions.