EXPERIENCES OF FAMILY CAREGIVERS OF PATIENTS WITH HUNTINGTON’S DISEASE IN COLOMBIAABSTRACT
Objective: To understand the caregiving experiences of family caregivers of people with Huntington's disease on the Caribbean coast of Colombia.
Methods: Qualitative study with a biographical narrative approach. The results were obtained from ten family caregivers through a semi-structured interview. The fieldwork was developed between June 2020 and May 2021 in five municipalities on the Caribbean coast of Colombia and registered with the Fundación Factor H. Data were analyzed using the content technique.
Results: The caregivers are women between the ages of 18 and 90 with a secondary education level, no economic income, and homes located in strata 1 and 2. The care experiences were organized around the analytical axis: “Care: a mixture of feelings and learning”, which was deployed from two subcategories: “Caring within love and suffering and Learning by caring.” Life stories express the fusion of feelings with the ability to learn by caring; in this sense, care is connected with physical and emotional overload, losses, and ruptures.
Conclusions: The implementation of public policies aimed at strengthening the family caregiver of patients with Huntington's disease is urgent. It is not enough to guarantee the rights of the patient, because alongside them, there is the figure of a caregiver who requires support, knowledge and motivation to face the long road of caring for a family member with Huntington's disease.
DESCRIPTORS:
Caregivers; Huntington's disease; Emotions; Experiential learning; Long-term care
RESUMEN
Objetivo: comprender las experiencias de cuidado de cuidadores familiares de personas con la enfermedad de Huntington en la costa Caribe de Colombia.
Métodos: estudio cualitativo con enfoque narrativo biográfico. Los resultados fueron obtenidos de diez cuidadoras familiares mediante una entrevista semiestructurada. El trabajo de campo fue desarrollo entre junio de 2020 a mayo de 2021 en cinco municipios de la costa Caribe de Colombia e inscritas en la Fundación Factor H. Los datos fueron analizados bajo la técnica de contenidos.
Resultados: las cuidadoras son mujeres con edades entre 18 y 90 años con un nivel educativo de secundaria, sin ingresos económicos y viviendas localizadas en estratos 1 y 2. Las experiencias de cuidado se organizaron a partir del eje análitico:” “El cuidado: una mezcla de sentimientos y aprendizajes”, la cual se desplegó a partir de dos subcategorías: “Cuidar entre el amor y el sufrimiento y Aprender cuidando”. Los relatos de vida expresan la fusión de los sentimientos con la capacidad de aprender cuidando, en este sentido el cuidado se conecta con la sobrecarga física y emocional, las pérdidas y las rupturas.
Conclusiones: es urgente la implementación de políticas públicas orientadas al fortalecimiento del cuidador familiar de pacientes con Huntington. No basta con garantizar los derechos del enfermo, porque a su lado, se erige la figura de un cuidador que requiere apoyo, conocimientos y motivación para enfrentar el largo camino de cuidar a un familiar con Huntington.
DESCRIPTORES:
Cuidadores; Enfermedad de Huntington; Emociones; Aprendizaje basado en experiencia; Cuidados a largo plazo
RESUMO
Objetivo: Compreender as experiências de cuidado de cuidadores familiares de pessoas com doença de Huntington na costa caribenha da Colômbia.
Métodos: Estudo qualitativo com abordagem narrativa biográfica. Os resultados foram obtidos com diversos cuidadores familiares por meio de entrevista semiestruturada. O trabalho de campo foi realizado entre junho de 2020 e maio de 2021 em cinco municípios da costa caribenha colombiana cadastrados na Fundación Fator H. Os dados foram analisados por meio de análise de conteúdo.
Resultados: As cuidadoras são mulheres com idade entre 18 e 90 anos, ensino médio completo, sem renda familiar e domicílios localizados nos estratos 1 e 2. As experiências de cuidado foram organizadas em torno do eixo analítico: "Cuidar: uma mistura de sentimentos e aprendizados", que se desdobrou a partir de duas subcategorias: "Cuidar entre o amor e o sofrimento e Aprender cuidando". As histórias de vida expressam a fusão de sentimentos com a capacidade de aprender cuidando; nesse sentido, o cuidado está ligado à sobrecarga física e emocional, às perdas e aos rompimentos.
Conclusões: É urgente a implementação de políticas públicas que visem o fortalecimento dos cuidadores familiares de pacientes com doença de Huntington. Não basta garantir os direitos do paciente, pois ao seu lado está a figura do cuidador, que necessita de apoio, conhecimento e motivação para enfrentar o longo caminho de cuidar de um familiar com Huntington.
DESCRITORES:
Cuidadores; Doença de Huntington; Emoções; Aprendizagem baseada na experiência; Cuidados de longo prazo
INTRODUCTION
The approach to Huntington's Disease (HD) invites us to think of the family as an integrated whole, because beyond the statistics there are human beings whose lives change radically upon receiving a diagnosis of this nature1. Families begin to navigate a new, inexplicable world full of questions. Especially when the person with Huntington's develops motor, psychiatric, and cognitive impairments23, a caregiver is required in the intermediate and final phase of the disease because this is precisely the stage of greatest health deterioration, demanding greater resources and attention from the General Social Security System in Health (SGSSS)4.
The impact of Huntington's disease is linked to different dimensions of daily life for both the patient and the primary family caregiver. The latter must face, compensate for, and assume the effects and implications of the loss of the Huntington's patient5 functional (physical and mental) and even economic capacity. Therefore, given the need for interdisciplinary care and the ineffectiveness of public health policies, many caregivers have to resort to legal action or resign themselves to despair4.
Some studies have shown that a diagnosis of Huntington's disease has a major psychological impact that transcends the individual level, affecting families and society6. The hereditary nature, the fact that it is incurable, the triad of motor, cognitive and psychiatric symptoms, added to the changes in the patient's behavior that increase as time passes, influence the complexity of the situation both at a personal and family level7. Likewise, when this pathology occurs, a large number of feelings emerge in the caregiver along with significant learnings built in the daily world of these people that mark the care practices of the one who cares4.
In line with the above, the impact of these types of diseases is exacerbated in families with difficult socio-economic conditions, among other things due to limitations in the opportunity for timely diagnosis or the controls required to mitigate the effects on the health of individuals, families and communities4,5. In the case of the Colombian Caribbean, this problem is exacerbated by the fact that it is a territory marked by health inequities, social inequalities, and difficult living conditions, especially since all its departments, with the exception of Atlántico, report monetary poverty figures above the national average, and three of these (La Guajira, Córdoba, and Magdalena) occupy the top three spots among the five with the highest incidence of poverty in Colombia8. Thus, family caregivers located in this region would be exposed to greater health risks, becoming a group of interest for the prioritization of social protection programs in Colombia.
At a regional level, studies on Huntington's disease conclude that family caregivers on the Caribbean coast of Colombia experience transformations in their personal, family, and social lives, which become a call for collective and humanitarian action to mitigate the burden underlying rare diseases9. However, in addition, they suffer the hardships of social exclusion, the lack of healthcare, and the absence of support from professionals responsible for providing assistance to offer suitable care to themselves and their sick relatives3.
Although caregivers are considered the central focus for Huntington's patients, their caregiving practices often begin alone from an early age and without the necessary support.10 This is especially true when they face rare diseases like Huntington's, with little awareness of the specific psychiatric vulnerabilities of each gender that require personalized attention11 and the development of skills to learn to manage the anxiety generated by genetic risk and the maintenance of social and family networks12,13. Another aspect to consider is the learning needs experienced by young caregivers, expressed in managing the change in the parent-child relationship following the diagnosis, the strengthening of skills to cope with the end of life, and to harmonize school and social life with caregiving14.
Based on the above, there are few studies on the role of the caregiver on the Caribbean coast of Colombia, especially regarding caregiving experiences. This reveals a knowledge gap that weakens the provision of health services to this population, rendering it essential\ to strengthen support for caregivers, who need to develop self-care practices due to the imminent risk of harm to their own health11. In this sense, the caregiver’s vulnerability is clear when faced with unknown and complex situations without the required tools to do so, highlighting the fragility of healthcare systems.
From this perspective, nursing is key to building knowledge and promoting comprehensive care for patients with Huntington's disease and their caregivers, as nurses are the link between family care and specialized care. Understanding the established practices within families, to meet the care needs of patients with Huntington's disease, is essential for better care planning15.
Therefore, the objective of this study is to understand the caregiving experiences of family caregivers of people with Huntington's disease on the Caribbean coast of Colombia.
METHOD
Qualitative research with a biographical narrative approach. This methodological perspective was selected because it allows an approach to people's life-world based on what they narrate and interpret, constituting a mechanism to identify the experiences of a group of people, allowing understanding them within the framework of a past, present, and future chronology16.
The research was conducted in five municipalities in the Caribbean region of Colombia. The population consisted of family caregivers registered with the Fundación Factor H, which is a non-profit organization that has been operating in the region for several years and whose objectives include conducting studies that contribute to these patients well-being. A non-probabilistic intentional sampling was carried out adopting the following inclusion criteria: being primary caregivers, being of legal age (according to Colombian legislation, this corresponds to being over 18 years old), having at least one year of experience in the exercise of care and being in the database of the Fundación Factor H. Family caregivers with cognitive difficulties and those whose role was assumed on a temporary basis were excluded.
The interview protocol was structured around two main themes: sociodemographic factors and care experiences. The latter included questions such as: Tell us what feelings you experience when caring for a family member with Huntington's disease; Describe your day as a family caregiver; Tell us what your family and social life was like before becoming a caregiver for family members with Huntington's; What were your first lessons about Huntington's disease?; and What aspects do you need to know to perform the work of a caregiver for patients with Huntington's?
The protocol was submitted to a panel of experts and received feedback from family caregivers. In this context, we proceeded to approach the Foundation's directors to obtain their endorsement and access to the personal data of the patients and their caregivers.
Family caregivers were contacted by phone to be informed of the objective of the research, encourage their participation, and arrange a work schedule. Based on this, interviews were conducted via telephone or videoconference between June 2020 and May 2021, reaching a total of 10 caregivers. The number of participants was obtained using the saturation technique, whereby the search is suspended when the interviewees stop producing new contributions.
The interviews were conducted by a senior nursing student previously trained by professionals from the Fundación and the project directors. The fieldwork was supervised by two professors with Master's degrees in Social Development and Education, attached to the Nursing Program of the University of Cordoba, Colombia, and a professional with experience in the management of Huntington's disease, who acted as a liaison delegated by the Fundación Factor H.
The professors directing the project have extensive experience in qualitative research. Specifically, they have developed processes around supporting family caregivers with disabilities, cancer, autism spectrum disorder, among others. The project directors had no relationship with the participants, but the nursing student is a native of one of the selected municipalities. Additionally, the Fundación H provided advice for identifying and accessing informants. The estimated duration of the semi-structured interviews ranged between 45 and 60 minutes, time which included the reading and approval of the informed consent.
During the immersion phase, field notes were completed under an interactive perspective, integrating the main aspects of the research that caught the researchers' attention. The typology adopted follows the recommendations by Schatzman's & Strauss17, who propose three types of records: Observational Notes (ON), Theoretical Notes (TN), and Methodological Notes (MN). Each stage of the fieldwork generated a system of notes that were recorded in three columns: description, interpretation, and the researcher's experiences.
The interviews were recorded, transcribed, and organized. The text material was analyzed under the guidelines of Bardin's content analysis technique18, using non-specialized software. Data was read several times with a view to carrying out open coding in which initial codes organized in Excel were used. The thematic analysis resulted in a total of 13 codes, around which the common themes revolved that accounted for the specific phenomenon under study, allowing a starting point for the recognition and development of the categories.
The contrast exercise was carried out between the responses given by each of the participants, highlighting those events that favored examining the variations and similarities. Subsequently, axial coding was carried out through the integration of categories around the care experiences of HD’ patients caregivers. The significant fragments were organized into alphanumeric codes: e1, e2, e3, according to the participant's number in transcription order to guarantee anonymity and confidentiality.
Furthermore, the study adopted the following criteria for rigor: credibility (literal transcription of the interviews); transferability (ability to present the results broadly so that they can be applied in the management of other rare diseases); and confirmability (the return of the results and feedback was guaranteed).19.
Reflexivity was present in all stages of the study. Thus, efforts were made to record field notes in three-column grids, allowing the documentation of feelings and reflections derived from interviews with family caregivers. These notes were constantly debated by the working team, given the possibility that the closeness of the researcher in charge of collecting the data and the experience of the directors in the subject of caregivers influenced the analysis process, so the use of a reflective diary and the open dialogue with the Fundación Factor H were reflexivity techniques of great methodological value for controlling possible biases.
In addition, follow-up telephone interviews were conducted with the caregivers, to provide feedback on the data and confirm that the information collected matched what they wished to express. The adjustments were made within the framework of the feedback process and the categories were built based on the information obtained, thereby validating the data through a process of reflection and dynamic and interactive analysis.
The macro research from which these results are derived obtained the endorsement of the Fundación Factor H and of the authorized collegiate body at the University of Cordoba for this type of study. Likewise, the ethical criteria issued in the Declaration of Helsinki and Resolution 8430 of 1993 of Colombia were complied with at all times, through which the anonymity and respect for the ideas of the interviewees were guaranteed.
RESULTS
Sociodemographic characteristics
All participants were women aged between 18 and 90 years, with an educational level concentrated in secondary studies. Their homes are in socioeconomic strata one and two of the municipalities of Juan de Acosta, El Difícil, Sabanas de San Ángel, Algarrobo and Santa Marta located on the Caribbean coast of Colombia. All the interviewees revealed a precarious economic situation that limits the satisfaction of the needs of the patient and the entire family; likewise, they do not earn any type of income and expressed perceiving social exclusion not only from the Colombian State but from a large part of society in general.
Accounts of care practices within love and suffering
The category analyzed in this article corresponds to: “Care: a mixture of feelings and learning”, which was deployed from two subcategories: “Caring within love and suffering and Learning by caring.”
Care narratives highlight the connection between being and doing as an indissoluble unit full of meaning for those who carry out this work. The first line of arguments fell into the subcategory: Caring within love and suffering, based on the experiences of family caregivers who carry out their work to the extent that it involves feelings of sadness, guilt and anger, as seen in the following accounts:
[…] The truth is, it makes me sad to see that my dad died from it, and that other relatives of mine have died from it too. It makes me sad to see that there's still no cure, that there's nothing, and to think that I or my children might also end up with it (e2).
[…] It's not just about taking care of them; that person depends on you. There comes a point when they depend on you; if you're not there, they can't do their own things, in their final stage, and it's also about enduring many things; you have to be very tolerant (e4).
[…] For one, it's like being imprisoned; you felt... you practically felt imprisoned, because you couldn't do anything for the person (e10).
[…] It makes me very depressed and I suffer a lot for her and for myself, seeing how that disease changed our lives (e3).
The effects on the caregiver's world are revealed in several ways when they express the changes in their social life, in their life plans and the physical burden of coping with simultaneous routines between caring for the sick person and other family members, managing resources and containing feelings that overflow in the face of the living picture of a disease that tends to be repeated from generation to generation.
[…] I used to like going out to have fun, but I already started doing that, but nowadays they tell me to go out, but I say, no way, how am I going to go anywhere? (e1).
[…] I didn't have a childhood, I didn't know what a childhood was, because I became a caregiver for my mother and practically for my sisters because they were little (e5).
[…] I no longer feel able to go out, and if I do go out, it's only for a little while because I'm aware that I have to look after my mom or dad (e6).
[…] First, I get tired in my body, in my neck; that's a stress that sometimes makes me forget everything, because when I see them like that I get desperate, you don't feel calm, but well, I thank God that I have been able to sustain it because I have been dealing with this for many years (e7).
[…] Well, it's really sad, because when I see someone who was fine, and then you see them with these involuntary movements, it's difficult for both the patient and the caregiver. Being in that situation makes me sad that I might have to be in it myself someday (e8).
With trembling voices, the caregivers expressed their feelings and life trajectories from the moment Huntington knocked on their doors. They also shared their caregiving experiences acquired over the years when they have seen children, mothers, husbands, siblings, and uncles become ill and/or die. This condition generates despair in caregivers upon learning that it is incurable, and in addition to the pain they feel due to the affected person's alterations, they also express fears, anxieties, and uncertainty when constantly thinking about the genetic risk that another family member or they themselves may have. For them, Huntington's disease not only robs them of their sick relatives, but also limits their opportunity to live and enjoy a different life.
Stories from the perspective of learning by caring
The second subcategory, “learning by caring”, synthesizes the narratives of caregivers regarding the care of a family member with HD. In many of the responses, the knowledge built around the disease was observed, as reflected below:
[…] I know how it starts for them; at first you don't see anything wrong with them, and then suddenly they're already affected, because they get bad-tempered, and you know that already; well, that's the illness, and that's what you see. You don't notice anything else, except, first and foremost, the bad temper, which is the very first thing (e1).
[…] I know that's an incurable disease (e2).
[…] It's a disease that affects the brain, mobility, and tends to make people aggressive and things like that (e9).
[…] When we are caring for them, we have to be aware of everything that comes with it: mood swings, depression, crying, anger. It's like having a child again, a child whose behavior you don't know (e4).
Family caregivers accumulate skills and experiences that translate into new, self-learned abilities when caring for patients with Huntington's disease. Despite acknowledging how much of this learning is built in the daily practice of care, they point to the need for professional support from the onset of symptoms and have expectations of delving deeper into specific topics such as nutrition, rehabilitation, and management of aggressive behaviors:
[…] I would like to learn more, because what I do I have learned from them, but not because someone has given it to me or taught it to me (e5).
[…] I take care of her as best I can, but I don't know if I'm doing it right or wrong. I'd like to know; I'd like someone to explain to me how I should take care of her (e8).
[…] I would like to know about their diet, since they have difficulty swallowing and sometimes I wonder what I should do about it (e10).
[…] I would like to learn more about being a better caregiver, that is, how to care for them, what exercises to do with them (e3).
[…] I would have liked to have received information first on the genetic aspect, because, I mean, if there was a geneticist who could talk to you, because, I mean, the disease is appearing at that age in my mother, because, I mean, it's partly genetic, the second part is more about the behavior she was going to experience in her mood (e6)
[…] Regarding the topic of medications, I'm especially concerned about why those medications have made my mother react badly. (e5).
[…] managing the patient when an aggressive crisis occurs between the patient and the caregiver (e7).
From these accounts, one can appreciate the multiplicity of experiences acquired by caregivers based on how much they have had to learn in that difficult and painful journey of Huntington's disease. They emphasized their desire to continue learning to develop management strategies and meet the needs of their sick family member, providing care, compassion, and love on a permanent basis and regardless of tiredness or the difficult situation they are facing.
DISCUSSION
Informal care for Huntington's patients in the Colombian Caribbean is assumed by women in their capacity as mothers, daughters, sisters, and nieces, who adopt this role as a result of a system of cultural values, beliefs, family traditions, affections, or moral commitments present in the territory. In this regard, familism stands out as a typical feature of this region, where women are identified as directly responsible for patients requiring prolonged care20-21. This characteristic reveals profound imbalances regarding the participation of family members in healthcare, leading to overloads22 and its impact on the female population in terms of their health and income opportunities23.
In connection with the above, the exercise of family care in patients with Huntington's disease brings with it states of physical, mental and psychological exhaustion in women; therefore, the results of Santos and Pantaleón24 suggest focusing on emotions and communication as mechanisms for reducing the burden. Likewise, when a suitable support system is established, families of patients with Huntington's disease learn to cope with the situations arising from caregiving25 and increases the caregiver's empowerment to cope with the symptoms of the disease26.
The life narratives of family caregivers of patients with Huntington's disease describe profound connections between caregiving and feelings, with the affective dimension being one of the most affected. Therefore, it is necessary to implement psychological interventions based on acceptance therapy or compassion-centered therapy that can support the patient and their caregiver27,28. Other investigations3,29 concur with the present study in highlighting other areas impacted by Huntington's disease, such as work, recreational, and leisure spaces.
Being a caregiver for someone with Huntington's disease is a difficult task. The burden is so complex that caregivers experience a flood of feelings where emotional experiences are articulated and judgments about them are permanently constructed. Emotions such as sadness, crying, fear, and anger are linked to the daily practice of caring, to the point of being expressed as an articulated whole where the skills and capacity to feel of those who care converge. However, in the particular case of Huntington's disease, the genetic risk is added as a threat to personal and family life plans, causing higher levels of uncertainty and hopelessness.5,12 Therefore, family-centered care offers tools to address the challenges involved in caring for this condition30.
Regarding the ability to learn by caring, Huntington's patients caregivers routinely accumulate knowledge to keep their sick relative in the best possible condition; however, in their responses they indicate that they lack the necessary tools and skills to provide timely, adequate, and quality care. The findings confirmed that the participants have a great need for knowledge on specific care topics related to medication, nutrition, physical activity, and attention to violent and impulsive behaviors that allow for greater development, as well as being eager to interact with professionals who educate them so that they can provide warm and compassionate care to their family members.
In this context, education comes into play as a crucial factor that directly impacts knowledge of the disease and the care provided by caregivers. It is essential to move beyond the individual level to the family level, involving a compassionate approach to care, which acknowledges the need to build coordinated and interdisciplinary work to comprehensively address the learning needs of those experiencing these types of situations.
Another issue to consider is that women who care for family members with Huntington's disease often perform their role alone, amidst neglect from health institutions (which only attend to the patient), government agencies, their own families, and society in general, consistent with studies conducted in the Netherlands13 and Norway31. This particular theme includes one of the variations among the caregivers' narratives, when in some cases, the experience of "parentification" was evident in girls and adolescents who took on the care of the sick mother and their younger sisters.
While in other contexts the impact on the lives of children is similar to that mentioned above, especially when young people describe among their experiences feeling alone, abandoned, marginalized, overwhelmed, and experiencing self-learning to become a family caregiver1. The difference lies in remaining in the educational system, contrary to the findings of the present study, where the result was school dropout in all cases, becoming a significant barrier when reformulating life projects.
In this regard, the contributions by Torres et al.32 enter this debate by referring in their study to the perception of caregiver neglect in Colombia, which is due, among other things, to the health system's approach that prioritizes the disease, leaving aside the context in which it develops. Thus, in analogy with the work “El coronel no tiene quien le escriba” ("No one writes to the colonel"), of the Colombian Nobel Prize in Literature33, caregivers feel abandoned, waiting for solidarity and a response from a country where family, institutional, and social responsibility is ignored, unknown, postponed, scarce, or absent for various reasons.
In this sense, regardless of the pathology treated, the work of healthcare personnel is considered a cornerstone in the patient's recovery and for the strengthening of the skills of their caregivers; therefore, the guidance and counseling actions carried out under the prism of a socio-humanistic education contribute to reducing the biopsychosocial burden of those who care. Thus, the nursing professional is widely recognized by the health team for their leadership skills and for developing educational actions imbued with sensitivity, tenderness, and affection; hence, strengthening the work of nurses opens up possibilities for new ways of addressing HD that impact the improvement of the quality of life of the patient with HD and their care.34.
The possible limitations of the study are related to the fact that the interviews were conducted via videoconference or telephone due to the Covid-19 pandemic, hindering greater interaction with the participants that could have enriched the discussion of the findings. Similarly, there were no caregivers from high social strata, an aspect that would undoubtedly mark differences in the interviewees’ narratives.
Another limitation of the research lies in the methodological nature of qualitative studies, because although rigorous mechanisms were adopted to ensure the transferability of the data to similar contexts, the extrapolation of these results must be carried out with caution because the complexity of the problem, the diversity of the caregivers and their sociocultural characteristics mark significant differences to be considered in future studies.
The arguments presented encourage further research on the experience of caregivers from a family perspective with a gender focus. The data under discussion showed how the practice of caregiving is determined by traditions, culture, and a series of symbols surrounding the figure of the woman and her place in caring for the family. This aspect suggests exploring other avenues based on family studies to better understand care practices and how to enhance them for the comprehensive care of HD patients.
CONCLUSIONS
Huntington's disease affects and changes the life of the patient, the caregiver, and their family. Feelings surface and connect with the daily lives of those who care, who, in the case of the Colombian Caribbean, generally belong to low socioeconomic strata with high levels of social vulnerability. Likewise, the place of family groups is transformed in multiple dimensions, with the social, emotional, educational and occupational aspects being the most affected. Therefore, care experiences mark itineraries of fears, sadness and uncertainties, especially those connected with the genetic risk of developing the disease, the realization of being faced with an incurable pathology, and the anguish in the face of the unknown.
Female caregivers of HD patients openly express a need for training in specific areas such as nutrition, rehabilitation, emotional management, and medication control; additionally, there is a recognition that learning by caring is one of the strengths to face the difficult conditions arising from a complex and unknown pathology that marks confusing, painful paths with a knowledge deficit. The support of nursing professionals with specific knowledge of this disease is vital in building a foundation and fostering skills in the practice of care.
ACKNOWLEDGMENT
The authors would like to thank the family caregivers of Huntington's patients who participated in the study, the Fundación Factor H for their ongoing support and advice, and the University of Córdoba for backing this initiative.
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NOTES
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ORIGIN OF THE ARTICLE
Extracted from work - Perception of the quality of life of caregivers of patients with Huntington's disease, presented to the Nursing Program, University of Cordoba, in 2023.
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APPROVAL OF ETHICS COMMITTEE IN RESEARCH
It was submitted to the collegiate body in charge of ensuring the ethical and legal criteria for this type of research, obtaining the endorsement to be implemented through Code 2021-2A issued in 2021.
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TRANSLATED BY
Denise Costa Rodrigues.
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DATA AVAILABILITY
The database supporting the results of this study is available upon request from the author, Nydia Nina Valencia Jiménez. Data are not publicly accessible due to confidentiality, as the information compromises the privacy of the caregivers interviewed.
Edited by
The database supporting the results of this study is available upon request from the author, Nydia Nina Valencia Jiménez. Data are not publicly accessible due to confidentiality, as the information compromises the privacy of the caregivers interviewed.
