Objective:
to describe and explore the relationship of loneliness, anxiety and depression with adoption of the caregiver role among individuals caring for people with chronic diseases in Colombia.
Methods:
this was an exploratory and cross-sectional study involving 960 primary caregivers of individuals with chronic diseases. We applied the Caregiver Role Adoption Scale, the University of California at Los Angeles Loneliness Scale, and the Anxiety and Depression Scale. Principal component and multiple correspondence analyses were performed for clustering.
Results:
among the participating caregivers, 40.8% reported experiencing depression, 59% reported anxiety, 54.6% reported moderate to severe loneliness, and 88.6% reported satisfactory adoption of the caregiver role. Caregivers who presented basic or insufficient role adoption levels tended to have higher scores for anxiety, depression and loneliness.
Conclusion:
adoption of the caregiver role is a mediator in the anxiety, depression and loneliness levels among caregivers. Strategies aimed at supporting caregivers should include training for the caregiver role to mitigate the negative impacts of anxiety, depression and loneliness.
Descriptors:
Chronic Disease; Caregivers; Anxiety; Depression; Loneliness; Role Playing
Objetivo:
describir y explorar la relación de la soledad, la ansiedad y la depresión con la adopción del rol de cuidador entre personas que se ocupan de cuidar pacientes con enfermedades crónicas en Colombia.
Métodos:
se trató de un estudio exploratorio y transversal con la participación de 960 cuidadores principales de personas con enfermedades crónicas. Aplicamos la Escala de Adopción del Rol de Cuidador, la Escala de Soledad de la Universidad de California de Los Ángeles y la Escala de Ansiedad y Depresión. Se realizaron análisis de componentes principales y de correspondencia múltiple para el clustering .
Resultados:
el 40,8% de los cuidadores que participaron en el estudio informó padecer depresión, el 59% informó ansiedad, el 54,6% indicó soledad de moderada a grave y el 88,6% presentó adopción satisfactoria del rol de cuidador. Los cuidadores que presentaron los niveles básico o insuficiente en términos de adopción del rol tendieron a obtener puntuaciones de ansiedad, depresión y soledad más elevadas.
Conclusión:
adoptar el rol de cuidador es un mediador de los niveles de ansiedad, depresión y soledad entre los cuidadores. Las estrategias dirigidas a apoyar a los cuidadores deberían incluir preparación para dicho rol a fin de mitigar los efectos negativos de la ansiedad, la depresión y la soledad.
Descriptores:
Enfermedad Crónica; Cuidadores; Ansiedad; Depresión; Soledad; Desempeño de Papel
Objetivo:
descrever e explorar a relação entre a solidão, a ansiedade e a depressão com a adoção do papel de cuidador entre os indivíduos que cuidam de pessoas com doenças crônicas na Colômbia.
Método:
trata-se de um estudo exploratório e transversal que envolveu 960 cuidadores primários de indivíduos com doenças crônicas. Foi aplicada a Escala de Adoção do Papel de Cuidador, a Escala de Solidão da Universidade da Califórnia em Los Angeles e a Escala de Ansiedade e Depressão. Foram realizadas análises de componentes principais e de correspondência múltipla para o agrupamento.
Resultados:
entre os cuidadores participantes, 40,8% relataram ter depressão, 59% relataram ansiedade, 54,6% relataram solidão moderada a grave e 88,6% relataram uma adoção satisfatória do papel de cuidador. Os cuidadores que apresentaram níveis básicos ou insuficientes de adoção do papel tenderam a ter pontuações mais elevadas de ansiedade, depressão e solidão.
Conclusão:
a adoção do papel de cuidador é um mediador nos níveis de ansiedade, depressão e solidão entre os cuidadores. As estratégias destinadas a apoiar os cuidadores devem incluir o treinamento para o papel de cuidador, a fim de atenuar os impactos negativos da ansiedade, da depressão e da solidão.
Descritores:
Doença Crônica; Cuidadores; Ansiedade; Depressão; Solidão; Desempenho de Papéis
Highlights:
(1) More than half of the caregivers reported moderate or severe anxiety and loneliness.
(2) Caregivers with low role adoption levels presented more anxiety, depression and loneliness.
(3) Satisfactory adoption of the caregiver role reduces anxiety, depression and loneliness.
(4) Role adoption should be intervened to reduce the impact on caregivers’ mental health.
Introduction
Chronic diseases have been a prominent and pressing global concern for several decades ( 11. Luciani S, Nederveen L, Martinez R, Caixeta R, Chavez C, Sandoval RC, et al. Noncommunicable diseases in the Americas: a review of the Pan American Health Organization’s 25-year program of work. Rev Panam Salud Publica. 2023;47:1-12. https://doi.org/10.26633/RPSP.2023.13
https://doi.org/10.26633/RPSP.2023.13...
) . Although substantial global efforts have been made, the results have been limited, primarily due to the weaknesses in registration and notification systems for these diseases. Available data indicate a concerning trend of increasing burden of diseases over the last three decades, with chronic diseases in older adults contributing significantly to these statistics ( 22. Abbafati C, Machado DB, Cislaghi B, Salman OM, Karanikolos M, McKee M, et al. Five insights from the Global Burden of Disease Study 2019. Lancet. 2020;396(10258):1135-59. https://doi.org/10.1016/S0140-6736(20)31404-5
https://doi.org/10.1016/S0140-6736(20)31...
) . This escalating burden and its underlying causes can be attributed to factors such as population aging, increased life expectancy at birth, and ongoing exposure to risk factors ( 22. Abbafati C, Machado DB, Cislaghi B, Salman OM, Karanikolos M, McKee M, et al. Five insights from the Global Burden of Disease Study 2019. Lancet. 2020;396(10258):1135-59. https://doi.org/10.1016/S0140-6736(20)31404-5
https://doi.org/10.1016/S0140-6736(20)31...
) . Some studies have shown that chronic non-communicable diseases (CNCDs) were responsible for 1.62 billion Disability-Adjusted Life Years (DALYs), with a substantial increase from 43.2% in 1990 to 63.8% in 2019 ( 33. Abbafati C, Abbas KM, Abbasi-Kangevari M, Abd-Allah F, Abdelalim A, Abdollahi M, et al. Global burden of 369 diseases and injuries in 204 countries and territories, 1990-2019: a systematic analysis for the Global Burden of Disease Study 2019. Lancet. 2020;396(10258):1204-22. https://doi.org/10.1016/s0140-6736(20)30925-9
https://doi.org/10.1016/s0140-6736(20)30...
) . As of 2019, CNCDs recorded an incidence of 13,100 million new cases, prevalence of 7,100 million cases, and 42 million deaths, representing an 18.5% increase when compared to the 2010 figures. In descending order, the diseases with the highest DALYs in 2019 were cancer, cardiovascular diseases, chronic respiratory diseases, digestive diseases, neurological disorders and mental disorders ( 22. Abbafati C, Machado DB, Cislaghi B, Salman OM, Karanikolos M, McKee M, et al. Five insights from the Global Burden of Disease Study 2019. Lancet. 2020;396(10258):1135-59. https://doi.org/10.1016/S0140-6736(20)31404-5
https://doi.org/10.1016/S0140-6736(20)31...
) .
The global issue of CNCDs is undeniably significant, and efforts have primarily concentrated on assessing the extent of their burden. However, it is crucial to recognize that these diseases also exert far-reaching effects at other levels, particularly within families and on family caregivers ( 44. Ris I, Schnepp W, Mahrer Imhof R. An integrative review on family caregivers’ involvement in care of home-dwelling elderly. Health Soc Care Community. 2019;27(3):e95-111. https://doi.org/10.1111/hsc.12663
https://doi.org/10.1111/hsc.12663...
) . The progressive functional decline and multidimensional dependence resulting from CNCDs oftentimes require the designation of a family caregiver. This is particularly common in regions like Latin America, characterized by low- and middle-income countries, where patient care remains predominantly a family responsibility ( 55. Nascimento HG, Figueiredo AE. Dementia, family caregivers and health service: the care of yourself and the other. Cien Saude Colet. 2019;24(4):1381-92. https://doi.org/10.1590/1413-81232018244.01212019
https://doi.org/10.1590/1413-81232018244...
) . Family caregivers find themselves thrust into their role due to unforeseen circumstances, oftentimes lacking sufficient preparation for the complex care required in various settings, including the home environment. They must assist with basic activities of daily living, administer medications, manage invasive devices, coordinate medical appointments, make crucial decisions and address various health-related challenges concerning the patient ( 66. SerçekuÅ P. Becoming a family caregiver of a patient living with cancer. Int J Palliat Nurs. 2020;26(5):206-12. https://doi.org/10.12968/ijpn.2020.26.5.206
https://doi.org/10.12968/ijpn.2020.26.5....
) .
Compounded by the context marked by social isolation and limited support within which caregivers operate, the substantial caregiving responsibilities involved in caring for individuals with CNCDs exert detrimental effects on their well-being. Notably, anxiety and depression are extensively documented outcomes in the literature ( 77. Gutiérrez-Sánchez B, Ortega V, López-Martínez C, Del-Pino-Casado R. Association between Social Support and Depressive Symptoms in Informal Caregivers of Adult and Older Dependents: A Systematic Review and Meta-Analysis. J Clin Med. 2023;12(20):6468. https://doi.org/10.3390/jcm12206468
https://doi.org/10.3390/jcm12206468...
) . A meta-analysis comprising 93 studies on caregivers of dependent aged individuals revealed high prevalence of depression in this caregiving population. Moreover, it identified a correlation between high levels of depressive symptoms in informal caregivers and reduced social support levels, encompassing both perceived and received dimensions ( 77. Gutiérrez-Sánchez B, Ortega V, López-Martínez C, Del-Pino-Casado R. Association between Social Support and Depressive Symptoms in Informal Caregivers of Adult and Older Dependents: A Systematic Review and Meta-Analysis. J Clin Med. 2023;12(20):6468. https://doi.org/10.3390/jcm12206468
https://doi.org/10.3390/jcm12206468...
) .
Loneliness is prevalent among caregivers of individuals with CNCDs, with studies indicating that both the objective and subjective stress associated with daily patient care directly contribute to feelings of loneliness. In turn, these feelings are linked to an increased manifestation of depressive symptoms ( 88. Liang J, Aranda MP, Jang Y, Wilber K. The role of social isolation on mediating depression and anxiety among primary family caregivers of older adults: A two-wave mediation analysis. Int J Behav Med. 2023. https://doi.org/10.1007/s12529-023-10227-5
https://doi.org/10.1007/s12529-023-10227...
) . In a study conducted in the United Kingdom ( 99. Victor CR, Rippon I, Quinn C, Nelis SM, Martyr A, Hart N, et al. The prevalence and predictors of loneliness in caregivers of people with dementia: findings from the IDEAL programme. Aging Ment Health. 2021;25(7):1232-8. https://doi.org/10.1080/13607863.2020.1753014
https://doi.org/10.1080/13607863.2020.17...
) , it was found that 43.7% of the caregivers reported experiencing moderate loneliness, whereas 17.7% reported severe loneliness. Family caregivers frequently face a reduction in their personal space and in their opportunities for social interaction. They oftentimes grapple with losses and deprivations within their interpersonal relationships and are frequently distanced from their social circles due to their full-time commitment to caregiving. These circumstances expose them to heightened feelings of loneliness ( 1010. Kirby E, van Toorn G, Lwin Z. Routines of isolation? A qualitative study of informal caregiving in the context of glioma in Australia. Health Soc Care Community. 2022;30(5):1924-32. https://doi.org/10.1111/hsc.13571
https://doi.org/10.1111/hsc.13571...
) .
Some studies have documented the relationship between anxiety and depression, with loneliness frequently playing a mediating role. However, our understanding of how caregiver role adoption contributes to the development of these conditions remains limited ( 1111. Saadi JP, Carr E, Fleischmann M, Murray E, Head J, Steptoe A, et al. The role of loneliness in the development of depressive symptoms among partnered dementia caregivers: Evidence from the English Longitudinal Study of Aging. Eur Psychiatry. 2021;64(1):2012-3. https://doi.org/10.1192%2Fj.eurpsy.2021.20
https://doi.org/10.1192%2Fj.eurpsy.2021....
) . This study aims at assessing anxiety, depression, loneliness and caregiver role adoption in family caregivers of individuals with CNCDs. A number of research studies suggest that caregivers who are more adept at fulfilling their caregiving role and feel empowered in it are better equipped to use available resources, such as social and family support. They may also engage in better self-care practices, potentially leading to reduced loneliness and fewer psychological issues among caregivers ( 1212. Lohrasbi F, Alavi M, Akbari M, Maghsoudi J. Promoting psychosocial health of family caregivers of patients with chronic mental disorders: A review of challenges and strategies. Chonnam Med J. 2023;59(1):31-47. https://doi.org/10.4068/cmj.2023.59.1.31
https://doi.org/10.4068/cmj.2023.59.1.31...
) . The primary objective of this study is to describe and explore the relationship between loneliness, anxiety, depression and adoption of the caregiver role among individuals caring for people with chronic diseases in Colombia.
Method
Type of study
A descriptive, exploratory, and cross-sectional study adhering to the recommendations outlined in the Strengthening the Reporting of Observational Studies in Epidemiology (STROBE) guidelines for cross-sectional studies ( 1313. von Elm E, Altman DG, Egger M, Pocock SJ, Gøtzsche PC, Vandenbroucke JP. The Strengthening the Reporting of Observational Studies in Epidemiology (STROBE) statement: guidelines for reporting observational studies. J Clin Epidemiol. 2008;61(4):344-9. https://doi.org/10.1016/j.jclinepi.2007.11.008
https://doi.org/10.1016/j.jclinepi.2007....
) .
Data collection setting
The study was conducted in Bogotá, Cundinamarca (Cund.), Colombia, among family caregivers who were either enrolled in or attended family caregiver support programs, associations, and community organizations devoted to caregivers of individuals with chronic diseases.
Period
The study was conducted from the second half of 2020 to the second half of 2021.
Population and sample
This study included family caregivers of individuals with chronic diseases in Colombia through non-random sampling. The eligible participants were caregivers aged at least 18 years old, acting as the primary family caregiver for the patient, possessing intact mental status (Pfeiffer score of 0 to 2 errors), and living in Colombia. Caregivers who were hired professionals were excluded.
In total, the researchers compiled a list of 1,480 potential participants. Along with the study title and objectives, invitations to participate were sent to them via e-mail or telephone messages. The individuals who expressed interest and contacted the researchers underwent verification of the inclusion criteria, received detailed explanations about the study objectives, and were screened to determine whether they self-reported proficiency in the information and communication technologies required for completing the online form.
Procedures for data collection
Data collection involved hetero-administered procedures, which included conducting telephone interviews with willing participants and distributing online surveys through Google Forms for those who self-reported high technological proficiency. To mitigate potential biases, meticulous setup options were implemented in Google Forms to prevent missing data. An introductory section was provided as an example of correct form completion to minimize errors and enhance data accuracy. Additionally, the research assistants received extensive training not only in accurately applying questionnaires but also in creating a trustworthy atmosphere. This approach aimed at encouraging the participants to respond honestly, fostering an environment conducive to open communication. Information was collected from a total of 672 caregivers through the online form and 288 caregivers via telephone interviews.
Instruments for data collection
The sample was characterized using a survey designed to assess family caregivers and patients ( 1414. Chaparro-Diaz L, Sánchez B, Carrillo-Gonzalez GM. Encuesta de caracterización del cuidado de la diada cuidador familiar - persona con enfermedad crónica. Rev Cienc Cuidad. 2014;11(2):31-45. https://doi.org/10.22463/17949831.196
https://doi.org/10.22463/17949831.196...
) . This questionnaire encompassed details pertaining to the demographic, social and clinical aspects both of caregivers and of individuals with CNCDs. It included questions regarding factors such as age, gender, schooling level, time as caregiver, and level of support received in caregiving.
The role adoption assessment resorted to the Caregiver Role Adoption Scale, which measures the transition into the caregiving role of individuals with chronic diseases. This questionnaire was developed based on Meleis’ Theory of Transitions, specifically tailored to the caregiving context ( 1515. Arias M, Carreño S, Chaparro L. Validity and reliability of the scale, Role Taking in caregivers of people with chronic disease, ROL. Int Arch Med. 2018;11(34):1-11. https://doi.org/10.3823/2575
https://doi.org/10.3823/2575...
) . Furthermore, it underwent validation in a population of caregivers of individuals with CNCDs in Colombia ( 1515. Arias M, Carreño S, Chaparro L. Validity and reliability of the scale, Role Taking in caregivers of people with chronic disease, ROL. Int Arch Med. 2018;11(34):1-11. https://doi.org/10.3823/2575
https://doi.org/10.3823/2575...
) . The psychometric properties of this instrument were evaluated for construct validity using Varimax, Quartimax and Equimax rotation tests in conjunction with a principal component extraction method. These analyses revealed a three-factor structure: a) Role Responses (items 1 to 7); b) Role Organization (items 8 to 15); and c) Role Tasks (items 16 to 22). The Cronbach’s alpha coefficient for the total scale was above 0.8. The questionnaire comprises 22 items, each answered on a Likert-type response scale from 1 to 5. For interpretation purposes, scores within the range of 22 to 60 points indicate insufficient role adoption, scores between 61 and 77 denote basic adoption, and scores between 78 and 110 mean satisfactory adoption of the caregiver role ( 1515. Arias M, Carreño S, Chaparro L. Validity and reliability of the scale, Role Taking in caregivers of people with chronic disease, ROL. Int Arch Med. 2018;11(34):1-11. https://doi.org/10.3823/2575
https://doi.org/10.3823/2575...
) .
Loneliness was assessed using the University of California at Los Angeles (UCLA) Loneliness Scale ( 1616. Velarde-Mayol C, Fragua-Gil S, García-de-Cecilia JM. Validación de la escala de soledad de UCLA y perfil social en la población anciana que vive sola. Semergen. 2016;42(3):177-83. https://doi.org/10.1016/j.semerg.2015.05.017
https://doi.org/10.1016/j.semerg.2015.05...
) , which consists of ten questions. This scale presents a one-factor structure, analyzed through Varimax rotation with an explained variance of 71.6%. Its Cronbach’s alpha coefficient is 0.94. In its validated Spanish version, tested in an adult population ( 1616. Velarde-Mayol C, Fragua-Gil S, García-de-Cecilia JM. Validación de la escala de soledad de UCLA y perfil social en la población anciana que vive sola. Semergen. 2016;42(3):177-83. https://doi.org/10.1016/j.semerg.2015.05.017
https://doi.org/10.1016/j.semerg.2015.05...
) , lower scores indicate greater loneliness. However, for statistical analysis in this study, the item scores were inverted, meaning that higher scores now represent higher loneliness levels. Consequently, severe loneliness is defined as 31 or more points, moderate loneliness falls within the range of 20 to 30 points, and no loneliness corresponds to scores below 20 points.
Anxiety and depression were assessed using the Hospital Anxiety and Depression Scale (HADS) ( 1717. Madrigal GA, Pablo DM, Flores JJ, Urdapilleta HE, Lara RG, Galindo VO. Propiedades psicométricas de la Escala de Ansiedad y Depresión Hospitalaria (HADS) en una muestral de pacientes mexicanos con enfermedades respiratorias. Psicología Salud. 2021;31(2):323-32. https://doi.org/10.25009/pys.v3li2.2700
https://doi.org/10.25009/pys.v3li2.2700...
) , which comprises 14 items: seven devoted to measuring anxiety and the other seven for depression. This scale has been employed in community settings to assess these constructs and has shown satisfactory sensitivity (ranging between 0.74 and 0.84) and specificity (from 0.78 to 0.8). Examined within a similar population of adult patients, the psychometric properties of the scale indicate adequate construct validity, featuring a two-factor structure that explains 44.84% of the variance and internal consistency with a Cronbach’s alpha coefficient of 0.85. To interpret the scale, scores between zero and seven points suggest normal state (no symptoms), scores between 8 and 10 indicate doubtful status, and scores equal to or greater than 11 mean clinical concern related to anxiety and depression.
Data treatment and analysis
The information gathered was organized in a Microsoft Excel spreadsheet and subjected to analysis using the R program. The qualitative variables (both nominal and ordinal) were assessed by calculating counts and proportions, whereas the primary variables had their ranges examined.
The quantitative variables underwent the following analyses: a) The characterization variables were evaluated using mean and standard deviation; b) The loneliness, anxiety, depression and role adoption scores were examined in terms of proportions; and c) Multivariate cluster analysis was performed employing principal component and cluster techniques to explore interrelationships among the study variables. Statistical significance was determined for values with a p-value below 0.05.
Ethical aspects
This study was approved by the Ethics Committee of the Nursing School at the National University of Colombia (AVAL-028-2019). Before participating in the study, the family caregivers provided their virtual informed consent by signing it.
Results
A total of 960 family caregivers answered the questionnaires. They were predominantly female (85%), with a mean age of 50.47 years old. Most of them were married (35.63%), engaged in house chores (58%) and had a low socioeconomic status (86.87%). Of the caregivers, 47.6% were children of the patients with CNCDs, 79.9% had been caregivers since the time of diagnosis, and 55.1% perceived their relationship with their relative as very good. Table 1 provides a detailed characterization of the caregivers.
Regarding the individuals with CNCDs, it was observed that they were predominantly female (61.35%) and that their mean age was 67.92 years old (Standard Deviation [SD] = 20.45). Among them, 50% were pluripathological patients, with a mean of 10.97 (SD = 11.55) years since their diagnosis. Furthermore, 55.42% of the patients had a single caregiver who devoted a mean of 16.97 hours a day to caregiving (SD = 8.38).
Most of the family caregivers participating in the study obtained satisfactory scores in role adoption. When the doubtful and clinical problem scores were combined, depression and anxiety had 40.8% and 58.9% prevalence, respectively. On the other hand, loneliness was not a significant issue for most of the participants, with only 45.4% reporting it. Table 2 provides a detailed breakdown of the results for these variables based on the score ranges.
- Results corresponding to anxiety, depression, loneliness and role adoption in caregivers by score ranges (n = 960). Bogotá, Colombia, 2021
A Principal Components Analysis (PCA) was performed, as depicted in Figure 1 , using the total scores related to Role Adoption, Anxiety, Depression and Loneliness. The analysis focused on the first two dimensions, which collectively accounted for 80.6% of the total variance. Furthermore, these first two dimensions explained over 75% of the variance in the totals. This suggests a positive association between the total scores for anxiety and depression, indicating that caregivers with higher anxiety levels tend to also have higher depression levels. In fact, as measured by Pearson’s linear correlation coefficient, the linear association degree between these two scores is r = 0.696 (p < 0.001). Conversely, the scores for anxiety and depression on the Hospital Depression and Anxiety Scale present a moderate negative association with role adoption (r = -0.337). Additionally, the scores for anxiety, depression and role adoption did not show significant correlations with the loneliness score, as indicated by r = 0.141, r = 0.126 and r = 0.256, respectively.
- Principal Component Analysis of the total scores for anxiety, depression, loneliness, and role adoption (n = 960). Bogotá, Colombia, 2021
In further analyses performed with the caregivers’ sociodemographic variables, no significant associations were identified with the total scores on the various scales. However, a minor decrease in Role Adoption was noticed among caregivers of female patients, caregivers who were not parents or had occupations as students, and those belonging to average and high socioeconomic levels. Additionally, a Multiple Correspondence Analysis was carried out using the score ranges, as illustrated in Figure 2 . This analysis explained 40.7% of the associations between the score categories. It is noteworthy that caregivers experiencing anxiety and depression issues were more frequently linked to moderate loneliness level and to basic role adoption. Conversely, those with lower depression and anxiety levels did not report experiencing loneliness.
Figure 3 presents a clustering analysis using the total scores for role adoption, anxiety, depression and loneliness. Employing the k-means method, the analysis revealed the possibility of grouping caregivers into three different categories. The first group comprised 120 caregivers characterized by normal anxiety and depression levels, satisfactory role adoption and severe loneliness, explaining 64.6% of the variance (EV). The second group included 341 caregivers with clinical-level anxiety and depression, basic role adoption and moderate loneliness, explaining 68.4% of the variance (EV). Finally, the third group consisted of 499 participants presenting normal anxiety and depression levels, no loneliness and significant role adoption, explaining 64.9% of the variance (EV).
- Representation of the classification corresponding to the anxiety, depression, loneliness and role adoption scores with Multiple Correspondence Analysis (n = 960). Bogotá, Colombia, 2021
- Clustering analysis of the caregivers using k-means and three groups (n = 960). Bogotá, Colombia, 2021
Lastly, a Principal Component Analysis was performed within each of the three groups using the total scores of the variables. In group 1, a positive association between the Anxiety and Depression total scores was observed, while both presented a negative association with the Loneliness score. Remarkably, the total score for Role Adoption did not show any significant correlation with the other three variables. Conversely, in group 2, the caregivers obtained Role Adoption scores that were negatively associated with the total Loneliness score, and Depression displayed a moderate positive association with Loneliness. Finally, in group 3, Role Adoption presented a negative association with Depression, whereas Anxiety and Loneliness were positively associated and, in turn, showed no correlation with the other two variables (Role Adoption and Depression).
Discussion
This study has unveiled various aspects concerning anxiety, depression, loneliness and role adoption among caregivers of individuals with CNCDs within the Colombian context, given the limited available evidence. Firstly, a notable finding is the high prevalence of role adoption at satisfactory levels, with 88.6% of the caregivers self-classifying themselves at this level. It is worth noting that the caregiver role adoption level exerts direct impacts on their responses, organizational strategies and tasks they undertake in this role ( 1515. Arias M, Carreño S, Chaparro L. Validity and reliability of the scale, Role Taking in caregivers of people with chronic disease, ROL. Int Arch Med. 2018;11(34):1-11. https://doi.org/10.3823/2575
https://doi.org/10.3823/2575...
) .
In terms of responses, it has been established that assuming the caregiving role, especially when faced with high caregiving demands in an isolated and poorly supported context, leads to adverse effects on quality of life ( 1818. Gabriel I, Creedy D, Coyne E. A systematic review of psychosocial interventions to improve quality of life of people with cancer and their family caregivers. Nurs Open. 2020;7(5):1299-312. https://doi.org/10.1002/nop2.543
https://doi.org/10.1002/nop2.543...
) , caregiver burden ( 1919. Lindeza P, Rodrigues M, Costa J, Guerreiro M, Rosa MM. Impact of dementia on informal care: a systematic review of family caregivers’ perceptions. BMJ Support Palliat Care. 2020. https://doi.org/10.1136/bmjspcare-2020-002242
https://doi.org/10.1136/bmjspcare-2020-0...
) , and anxiety and depression ( 77. Gutiérrez-Sánchez B, Ortega V, López-Martínez C, Del-Pino-Casado R. Association between Social Support and Depressive Symptoms in Informal Caregivers of Adult and Older Dependents: A Systematic Review and Meta-Analysis. J Clin Med. 2023;12(20):6468. https://doi.org/10.3390/jcm12206468
https://doi.org/10.3390/jcm12206468...
) . Organization of the caregiving role and the specific tasks performed by caregivers have been documented to directly influence the outcomes in individuals with CNCDs. Simultaneously, these outcomes reciprocally affect caregivers in a symbiotic relationship ( 2020. Høeg BL, Frederiksen MH, Andersen EAW, Saltbæk L, Friberg AS, Karlsen RV, et al. Is the health literacy of informal caregivers associated with the psychological outcomes of breast cancer survivors? J Cancer Surviv. 2021;15(5):729-37. https://doi.org/10.1007/s11764-020-00964-x
https://doi.org/10.1007/s11764-020-00964...
) . Hence, expanding our understanding of the caregiver role adoption process and promoting its seamless transition should be among the top priorities in this field. This effort aims at enhancing outcomes not only for the caregivers but also for the patients themselves ( 2121. Ferreira BA, Gomes TJB, Baixinho CRSL, Ferreira OMR. Transitional care to caregivers of dependent older people: an integrative literature review. Rev Bras Enferm. 2020;73(Suppl 3):e20200394. https://doi.org/10.1590/0034-7167-2020-0394
https://doi.org/10.1590/0034-7167-2020-0...
) .
In this study, 59% prevalence of anxiety was found and depression stood at 40.8%, both showing scores in the borderline range on each scale. Notably, the prevalence of anxiety surpassed the 42.3% reported in a prior meta-analytic study ( 77. Gutiérrez-Sánchez B, Ortega V, López-Martínez C, Del-Pino-Casado R. Association between Social Support and Depressive Symptoms in Informal Caregivers of Adult and Older Dependents: A Systematic Review and Meta-Analysis. J Clin Med. 2023;12(20):6468. https://doi.org/10.3390/jcm12206468
https://doi.org/10.3390/jcm12206468...
) involving caregivers of individuals with cancer, whereas depression had a prevalence very close to the 46.55% reported in the same study. It is important to emphasize that both anxiety and depression are confirmed issues within the Colombian population of caregivers. Although anxiety appears to be more prevalent than depression, it is crucial to maintain a focus both on research and on caregiver support. This emphasis is warranted since the literature widely documents the influence of anxiety as a predictor of depression ( 2222. Krupnik V. Depression as a failed anxiety: The continuum of precision-weighting dysregulation in affective disorders. Front Psychol. 2021;12:657738. https://doi.org/10.3389/fpsyg.2021.657738
https://doi.org/10.3389/fpsyg.2021.65773...
) .
The findings of this study indicate satisfactory adoption of the caregiving role alongside a notable prevalence of anxiety and depression. Additionally, high prevalence of loneliness was observed, with 54.6% of the study participants reporting some loneliness degree. This discovery closely aligns with the 60.7% prevalence of loneliness reported in a prior study conducted in the United Kingdom ( 99. Victor CR, Rippon I, Quinn C, Nelis SM, Martyr A, Hart N, et al. The prevalence and predictors of loneliness in caregivers of people with dementia: findings from the IDEAL programme. Aging Ment Health. 2021;25(7):1232-8. https://doi.org/10.1080/13607863.2020.1753014
https://doi.org/10.1080/13607863.2020.17...
) . It is evident that perceived loneliness is an undeniable issue among family caregivers of individuals with chronic conditions, largely stemming from the all-encompassing nature of the caregiving role.
In the current study, data were collected on variables that might influence this sense of isolation. For instance, 55.42% of the patients reported having only one caregiver, 79.9% of the caregivers mentioned having provided care since the time of diagnosis, and a daily commitment of 16.97 hours to patient care was evident. Within this context, it is conceivable that caregivers are at higher risk of perceiving themselves as lonely. The demanding nature and substantial time commitment required for caregiving leave limited opportunities for caregivers to engage with their immediate support networks or allocate time for themselves. Moreover, the study revealed a significant and direct relationship between loneliness, depression and anxiety, which further corroborates the existing evidence on the interplay among these three variables. This underscores the pressing need for interventions aimed at mitigating these adverse effects on caregivers’ health ( 2323. Ross A, Perez A, Wehrlen L, Lee LJ, Yang L, Cox R, et al. Factors influencing loneliness in cancer caregivers: A longitudinal study. Psychooncology. 2020;29(11):1794-801. https://doi.org/10.1002/pon.5477
https://doi.org/10.1002/pon.5477...
) .
One of the most significant results of this study emerged from the clustering analyses. Caregivers with lower role adoption levels presented markedly higher levels of loneliness, anxiety and depression. This finding is in line with prior research from other countries ( 2222. Krupnik V. Depression as a failed anxiety: The continuum of precision-weighting dysregulation in affective disorders. Front Psychol. 2021;12:657738. https://doi.org/10.3389/fpsyg.2021.657738
https://doi.org/10.3389/fpsyg.2021.65773...
) but represents a noteworthy addition to our understanding of caregivers’ health in the Colombian context. This discovery gains particular significance when considering that family caregivers in Colombia carry out their roles within a context characterized by neglect, inadequate institutional support and countless economic challenges associated with providing care in a country with a medium to low per capita income ( 2424. Reid J, de Vries E, Ahmedzai SH, Arias-Rojas M, Calvache JA, Gómez-Sarmiento SC, et al. Palliative care and oncology in Colombia: The potential of integrated care delivery. Healthcare. 2021;9(7):789. https://doi.org/10.3390/healthcare9070789
https://doi.org/10.3390/healthcare907078...
) . An unprecedented finding within this study pertains to the mediating effect of caregiver role adoption on the other variables, underscoring the imperative to broaden the theoretical framework surrounding caregiving. Rather than being solely an instrumental task, this role is constructed through interactions with significant others and evolves amidst continuous changes, requiring support through transitional care ( 2525. Allen J, Woolford M, Livingston PM, Lobchuk M, Muldowney A, Hutchinson AM. Informal carer support needs, facilitators and barriers in transitional care for older adults from hospital to home: A scoping review. J Clin Nurs. 2023;32(19-20):6773-95. https://doi.org/10.1111/jocn.16767
https://doi.org/10.1111/jocn.16767...
) .
This study carries several implications for the Nursing practice. In the first place, understanding the role adoption process empowers nurses to recognize the unique challenges faced by caregivers and provide tailored support to help them navigate their newfound responsibilities. This may involve offering guidance and resources to enhance their caregiving skills. Secondly, acknowledging the prevalence of caregiver anxiety, loneliness and depression, nurses and the healthcare system can implement targeted interventions to address the caregivers’ mental health needs. This might encompass providing counseling, easing connections with support groups and creating opportunities for social engagement. Additionally, offering respite care can be instrumental in alleviating the burdens placed on caregivers. Thirdly, by integrating this knowledge into the Nursing practice, health professionals can contribute to enhancing caregivers’ well-being, promoting effective caregiving, and ultimately improving patient outcomes within the context of chronic disease management.
This study has its limitations, including intentional sampling, which restricts generalizability of the results beyond the study sample. However, we have provided a comprehensive description of the sample to enhance applicability of the findings to settings with individuals who share similar characteristics to our participants. Another noteworthy limitation is the potential impact of the COVID-19 pandemic on the variables of interest. The data were collected amidst government-mandated closures and isolation orders during the second and third waves of COVID-19 infections in Colombia. The pandemic has been documented to exacerbate anxiety, depression and loneliness due to social distancing ( 2626. Li Q, Zhang H, Zhang M, Li T, Ma W, An C, et al. Mental Health Multimorbidity among caregivers of older adults during the COVID-19 Epidemic. Am J Geriatr Psychiatry. 2021;29(7):687-97. https://doi.org/10.1016%2Fj.jagp.2021.01.006
https://doi.org/10.1016%2Fj.jagp.2021.01...
) . As we did not control for this variable in our study, it is plausible that anxiety, depression and loneliness levels may have been significantly influenced not only by the caregiving role but also by the pandemic itself, which amplified pre-existing issues in caregivers.
Additionally, having resorted to diverse data collection methods, such as online forms and telephone calls, may have introduced bias. To mitigate this, the research team provided thorough training to the assistant research staff, equipping them with the necessary skills to assist the participants in answering the questionnaires and ensuring proper filling out of the online forms. Furthermore, it is worth noting that the sample primarily consisted of family caregivers with relatively high schooling levels, most having completed at least High School or Higher Education, with a mean age of 50 years old. These demographic characteristics suggest reasonable familiarity and proficiency levels with online surveys, which may help mitigate potential biases associated with online data collection methods. Nonetheless, it is essential to acknowledge the potential bias introduced by the varied data collection methods when interpreting the study findings.
Conclusion
The family caregivers of individuals with chronic diseases were predominantly women who devoted a substantial number of hours a day to caregiving, resulting in a cumulative commitment that encompassed the considerable caregiving demands arising from the dependence status of their family members. The study identified a significant relationship between caregiver role adoption and the responses to anxiety, depression and loneliness. Specifically, caregivers with lower role adoption levels presented significantly higher anxiety, depression and loneliness levels.
Further research is warranted in this domain to enhance our understanding of role adoption and to explore intervention studies aimed at easing a smoother transition for caregivers. These interventions might play a pivotal role in reducing the prevalence of anxiety, depression and loneliness among this population of caregivers.
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All authors approved the final version of the text.
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How to cite this articleCarreño-Moreno S, Pacheco-López M, Arias-Rojas M. Role adoption, anxiety, depression and loneliness in family caregivers of patients with chronic diseases. Rev. Latino-Am. Enfermagem. 2024;32:e4140 [cited year month day]. Available from: URL . https://doi.org/10.1590/1518-8345.6926.4140
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Publication Dates
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Publication in this collection
07 June 2024 -
Date of issue
2024
History
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Received
29 June 2023 -
Accepted
01 Dec 2023