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Published in: BioPsychoSocial Medicine 1/2020

Open Access 01-12-2020 | Affective Disorder | Research

The psychosocial profile of family caregivers of children with chronic diseases: a cross-sectional study

Authors: Filiberto Toledano-Toledano, David Luna

Published in: BioPsychoSocial Medicine | Issue 1/2020

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Abstract

Background

A family caregiver is defined as a person who has a significant emotional bond with the patient; this caregiver is a family member who is a part of the patient’s family life cycle; offers emotional-expressive, instrumental, and tangible support; and provides assistance and comprehensive care during the chronic illness, acute illness, or disability of a child, adult, or elderly person. The objectives of this study were to identify the psychosocial profiles of family caregivers of children with chronic diseases and to establish the relationship between these profiles and sociodemographic variables.

Methods

A cross-sectional study was conducted involving 401 family caregivers of children with chronic diseases at the National Institute of Health in Mexico City. The participants responded to the Sociodemographic Variables Questionnaire (Q-SV) for research on family caregivers of children with chronic disease and a battery of 7 instruments that examined anxiety, caregiver burden, family support, depression, resilience, parental stress, and the World Health Organization Well-Being Index.

Results

A hierarchical cluster analysis and its confirmation through a nonhierarchical cluster analysis confirmed two profiles of caregivers of pediatric patients with chronic diseases. Profile 1, called Vulnerability of family caregivers, is characterized by high levels of anxiety, depression, parental stress and caregiver burden, accompanied by low levels of family support, resilience, and well-being. Profile 2, called Adversity of family caregivers, shows an inverse pattern, with high levels of family support, resilience, and well-being and low levels of anxiety, depression, parental stress and caregiver burden. The sociodemographic characteristics are similar for both profiles, with the exception of the caregiver’s family type. Profile 1 shows more single-parent caregivers, while profile 2 includes more caregivers with a nuclear family. However, the type of family did not reach significance for predicting the caregiver’s profile in a bivariate logistic regression model.

Conclusions

The psychosocial profile of family caregivers of children with chronic diseases can be structured according to their psychosocial characteristics. Although no causal factors were detected that define criteria for belonging to one or another profile, the characteristics identified for each indicate the need for specific and differentiated intervention strategies for families facing adversity, risk and vulnerability during a child’s disease.
Literature
1.
go back to reference Toledano-Toledano F, Moral J, McCubbin LD, Cauley B, Luna D. Brief version of the coping health inventory for parents (CHIP) among family caregivers of children with chronic diseases. Health Qual Life Outcomes. 2020;18:104.PubMedPubMedCentralCrossRef Toledano-Toledano F, Moral J, McCubbin LD, Cauley B, Luna D. Brief version of the coping health inventory for parents (CHIP) among family caregivers of children with chronic diseases. Health Qual Life Outcomes. 2020;18:104.PubMedPubMedCentralCrossRef
2.
3.
go back to reference Craig L, Bittman M. The incremental time costs of children: an analysis of children's impact on adult time use in Australia. Fem Econ. 2008;14:59–88.CrossRef Craig L, Bittman M. The incremental time costs of children: an analysis of children's impact on adult time use in Australia. Fem Econ. 2008;14:59–88.CrossRef
4.
go back to reference Craig L, Mullan K. Parenthood, gender and work-family time in the United States, Australia, Italy, France, and Denmark. J Marriage Fam. 2010;72:1344–61.CrossRef Craig L, Mullan K. Parenthood, gender and work-family time in the United States, Australia, Italy, France, and Denmark. J Marriage Fam. 2010;72:1344–61.CrossRef
5.
go back to reference McCann D, Bull R, Winzenberg T. The daily patterns of time use for parents of children with complex needs. J Child Health Care. 2012;16:26–52.PubMedCrossRef McCann D, Bull R, Winzenberg T. The daily patterns of time use for parents of children with complex needs. J Child Health Care. 2012;16:26–52.PubMedCrossRef
6.
go back to reference Khanna AK, Prabhakaran A, Patel P, Ganjiwale JD, Nimbalkar SM. Social, psychological and financial burden on caregivers of children with chronic illness: a cross-sectional study. Indian J Pediatr. 2015;82:1006–11.PubMedCrossRef Khanna AK, Prabhakaran A, Patel P, Ganjiwale JD, Nimbalkar SM. Social, psychological and financial burden on caregivers of children with chronic illness: a cross-sectional study. Indian J Pediatr. 2015;82:1006–11.PubMedCrossRef
7.
go back to reference Toledano-Toledano F, Domínguez-Guedea MT. Psychosocial factors related with caregiver burden among families of children with chronic conditions. Biopsychosoc Med. 2019;13:6.PubMedPubMedCentralCrossRef Toledano-Toledano F, Domínguez-Guedea MT. Psychosocial factors related with caregiver burden among families of children with chronic conditions. Biopsychosoc Med. 2019;13:6.PubMedPubMedCentralCrossRef
8.
go back to reference Toledano-Toledano F, Contreras-Valdez JA. Validity and reliability of the beck depression inventory II (BDI-II) in family caregivers of children with chronic diseases. PLoS One. 2018;13:e0206917.PubMedPubMedCentralCrossRef Toledano-Toledano F, Contreras-Valdez JA. Validity and reliability of the beck depression inventory II (BDI-II) in family caregivers of children with chronic diseases. PLoS One. 2018;13:e0206917.PubMedPubMedCentralCrossRef
9.
go back to reference Ramos B, Barcelata B, Figueroa L, Rojas R, Islas S, Alpuche R, et al. Perfil del cuidador informal en el contexto del hogar. In: del Río B, editor. Emergencia del cuidado informal Como sistema de salud. México: Porrúa-UNAM; 2008. p. 99–125. Ramos B, Barcelata B, Figueroa L, Rojas R, Islas S, Alpuche R, et al. Perfil del cuidador informal en el contexto del hogar. In: del Río B, editor. Emergencia del cuidado informal Como sistema de salud. México: Porrúa-UNAM; 2008. p. 99–125.
10.
go back to reference Toledano-Toledano F, Rodríguez-Rey R, Moral J, Luna D. A sociodemographic variables questionnaire (Q-SV) for research on family caregivers of children with chronic disease. BMC Psychol. 2019;7:85.PubMedPubMedCentralCrossRef Toledano-Toledano F, Rodríguez-Rey R, Moral J, Luna D. A sociodemographic variables questionnaire (Q-SV) for research on family caregivers of children with chronic disease. BMC Psychol. 2019;7:85.PubMedPubMedCentralCrossRef
11.
go back to reference National Center on Caregiving FCA. Caregiver assessment: principles, guidelines and strategies for change. Report from a national consensus development conference. San Francisco: National Center on Caregiving, Family Caregiver Alliance; 2016. National Center on Caregiving FCA. Caregiver assessment: principles, guidelines and strategies for change. Report from a national consensus development conference. San Francisco: National Center on Caregiving, Family Caregiver Alliance; 2016.
12.
go back to reference Alecxih L, Zeruld S, Olearczyk B. Characteristics of caregivers based on the survey of income and program participation. National family caregiver support program: selected issue briefs. Washington, DC: Department of Health and Human Services, Administration on Aging; 2001. Alecxih L, Zeruld S, Olearczyk B. Characteristics of caregivers based on the survey of income and program participation. National family caregiver support program: selected issue briefs. Washington, DC: Department of Health and Human Services, Administration on Aging; 2001.
13.
go back to reference Martínez C, Ramos N, Robles M, Martínez L, Figueroa C. Carga y dependencia en cuidadores primarios informales de pacientes con parálisis cerebral infantil severa. Psicol Salud. 2012;22:275–82. Martínez C, Ramos N, Robles M, Martínez L, Figueroa C. Carga y dependencia en cuidadores primarios informales de pacientes con parálisis cerebral infantil severa. Psicol Salud. 2012;22:275–82.
14.
go back to reference Glajchen M. The emerging role and needs of family caregivers in cancer care. J Support Oncol. 2004;2:145–55.PubMed Glajchen M. The emerging role and needs of family caregivers in cancer care. J Support Oncol. 2004;2:145–55.PubMed
15.
go back to reference Cernvall M, Hovén E, Ljungman L, Ljungman G, Carlbring P, von Essen L. Posttraumatic stress and attentional bias towards cancer-related stimuli in parents of children recently diagnosed with cancer. PLoS One. 2016;11:e0152778.PubMedPubMedCentralCrossRef Cernvall M, Hovén E, Ljungman L, Ljungman G, Carlbring P, von Essen L. Posttraumatic stress and attentional bias towards cancer-related stimuli in parents of children recently diagnosed with cancer. PLoS One. 2016;11:e0152778.PubMedPubMedCentralCrossRef
16.
go back to reference Toledano-Toledano F, Moral J, Broche-Pérez Y, Domínguez-Guedea MT, Granados-García V. The measurement scale of resilience among family caregivers of children with cancer: a psychometric evaluation. BMC Public Health. 2019;19:1164.PubMedPubMedCentralCrossRef Toledano-Toledano F, Moral J, Broche-Pérez Y, Domínguez-Guedea MT, Granados-García V. The measurement scale of resilience among family caregivers of children with cancer: a psychometric evaluation. BMC Public Health. 2019;19:1164.PubMedPubMedCentralCrossRef
17.
go back to reference Creswell PD, Wisk LE, Litzelman K, Allchin A, Witt WP. Parental depressive symptoms and childhood cancer: the importance of financial difficulties. Support Care Cancer. 2014;22:503–11.PubMedCrossRef Creswell PD, Wisk LE, Litzelman K, Allchin A, Witt WP. Parental depressive symptoms and childhood cancer: the importance of financial difficulties. Support Care Cancer. 2014;22:503–11.PubMedCrossRef
18.
go back to reference Haegen MV, Luminet O. Stress, psychosocial mediators, and cognitive mediators in parents of child cancer patients and cancer survivors: attention and working memory pathway perspectives. J Psychosoc Oncol. 2015;33:504–50.CrossRef Haegen MV, Luminet O. Stress, psychosocial mediators, and cognitive mediators in parents of child cancer patients and cancer survivors: attention and working memory pathway perspectives. J Psychosoc Oncol. 2015;33:504–50.CrossRef
19.
go back to reference Kim Y, Baker F, Spillers RL. Cancer caregivers’ quality of life: effects of gender, relationship, and appraisal. J Pain Symptom Manag. 2007;34:294–304.CrossRef Kim Y, Baker F, Spillers RL. Cancer caregivers’ quality of life: effects of gender, relationship, and appraisal. J Pain Symptom Manag. 2007;34:294–304.CrossRef
20.
go back to reference Toledano-Toledano F, Moral J, McCubbin LD, Liebenberg L, Vera Jiménez JA, Rivera-Rivera L, et al. Validity and reliability of the Mexican resilience measurement scale in families of children with chronic conditions. Health Qual Life Outcomes. 2017;15:242.PubMedPubMedCentralCrossRef Toledano-Toledano F, Moral J, McCubbin LD, Liebenberg L, Vera Jiménez JA, Rivera-Rivera L, et al. Validity and reliability of the Mexican resilience measurement scale in families of children with chronic conditions. Health Qual Life Outcomes. 2017;15:242.PubMedPubMedCentralCrossRef
21.
go back to reference Chen J, Liu Y, Cai Q, Liu Y, Wang T, Wang J, et al. Depression in parents of children with leukemia in southern China accompanied by the prevalence of type D personality. Support Care Cancer. 2014;22:1277–86.PubMedCrossRef Chen J, Liu Y, Cai Q, Liu Y, Wang T, Wang J, et al. Depression in parents of children with leukemia in southern China accompanied by the prevalence of type D personality. Support Care Cancer. 2014;22:1277–86.PubMedCrossRef
22.
go back to reference Gardner MH, Mrug S, Schwebel DC, Phipps S, Whelan K, Madan-Swain A. Demographic, medical, and psychosocial predictors of benefit finding among caregivers of childhood cancer survivors. Psychooncology. 2017;26:125–32.PubMedCrossRef Gardner MH, Mrug S, Schwebel DC, Phipps S, Whelan K, Madan-Swain A. Demographic, medical, and psychosocial predictors of benefit finding among caregivers of childhood cancer survivors. Psychooncology. 2017;26:125–32.PubMedCrossRef
23.
go back to reference Hudson PL, Thomas K, Trauer T, Remedios C, Clarke D. Psychological and social profile of family caregivers on commencement of palliative care. J Pain Symptom Manag. 2011;41:522–34.CrossRef Hudson PL, Thomas K, Trauer T, Remedios C, Clarke D. Psychological and social profile of family caregivers on commencement of palliative care. J Pain Symptom Manag. 2011;41:522–34.CrossRef
24.
go back to reference Beck AT, Steer RA, Brown G. Manual for the beck depression inventory-II. Antonio: Psychological Corporation; 1996. Beck AT, Steer RA, Brown G. Manual for the beck depression inventory-II. Antonio: Psychological Corporation; 1996.
25.
go back to reference Beck AT, Epstein N, Brown G, Steer RA. An inventory for measuring clinical anxiety: psychometric properties. J Consult Clin Psychol. 1988;56:893–7.PubMedCrossRef Beck AT, Epstein N, Brown G, Steer RA. An inventory for measuring clinical anxiety: psychometric properties. J Consult Clin Psychol. 1988;56:893–7.PubMedCrossRef
26.
go back to reference Robles R, Varela S, Jurado S, Páez F. Versión mexicana del inventario de ansiedad de beck: propiedades psicométricas. Rev Mex Psicol. 2001;8:211–7. Robles R, Varela S, Jurado S, Páez F. Versión mexicana del inventario de ansiedad de beck: propiedades psicométricas. Rev Mex Psicol. 2001;8:211–7.
27.
go back to reference Palomar J, Gómez N. Desarrollo de una escala de medición de la resiliencia con Mexicanos (RESI-M) [construction of a measurement scale of resilience in Mexicans (RESI-M)]. Interdisciplinaria. 2010;27:7–22. Palomar J, Gómez N. Desarrollo de una escala de medición de la resiliencia con Mexicanos (RESI-M) [construction of a measurement scale of resilience in Mexicans (RESI-M)]. Interdisciplinaria. 2010;27:7–22.
28.
go back to reference Zarit S, Zarit J. Instructions for the burden interview. Technical document. Pennsylvania State University: University Park; 1987. Zarit S, Zarit J. Instructions for the burden interview. Technical document. Pennsylvania State University: University Park; 1987.
29.
go back to reference Alpuche V, Ramos B, Rojas M, Figueroa C. Validez de la entrevista de carga de Zarit en una muestra de cuidadores primarios informales. Psicol Salud. 2008;18:237–45. Alpuche V, Ramos B, Rojas M, Figueroa C. Validez de la entrevista de carga de Zarit en una muestra de cuidadores primarios informales. Psicol Salud. 2008;18:237–45.
30.
go back to reference Berry JO, Jones WH. The parental stress scale: initial psychometric evidence. J Soc Pers Relatsh. 1995;12:463–72.CrossRef Berry JO, Jones WH. The parental stress scale: initial psychometric evidence. J Soc Pers Relatsh. 1995;12:463–72.CrossRef
31.
go back to reference Oronoz B, Alonso-Arbiol I, Balluerka N. A Spanish adaptation of the parental stress scale. Psicothema. 2007;19:687–92.PubMed Oronoz B, Alonso-Arbiol I, Balluerka N. A Spanish adaptation of the parental stress scale. Psicothema. 2007;19:687–92.PubMed
32.
go back to reference Marín M. Desarrollo y validación de la escala de apoyo familiar en cuidadores del paciente pediátrico diagnosticado con cancer. Tesis de Maestría. México: Universidad Nacional Autónoma de México; 2006. Marín M. Desarrollo y validación de la escala de apoyo familiar en cuidadores del paciente pediátrico diagnosticado con cancer. Tesis de Maestría. México: Universidad Nacional Autónoma de México; 2006.
33.
go back to reference Bech P, Gudex C, Johansen S. The WHO (ten) weil-being index: validation in diabetes. Psychother Psychosom. 1996;65:183–90.PubMedCrossRef Bech P, Gudex C, Johansen S. The WHO (ten) weil-being index: validation in diabetes. Psychother Psychosom. 1996;65:183–90.PubMedCrossRef
34.
go back to reference Sociedad Mexicana de Psicología. Código ético del psicólogo [Ethical code of the psychologist]. Ciudad de México: Trillas; 2010. Sociedad Mexicana de Psicología. Código ético del psicólogo [Ethical code of the psychologist]. Ciudad de México: Trillas; 2010.
35.
go back to reference American Psychological Association. Ethical principles of psychologists and code of conduct. Am Psychol. 2002;57:1060–73.CrossRef American Psychological Association. Ethical principles of psychologists and code of conduct. Am Psychol. 2002;57:1060–73.CrossRef
36.
go back to reference World Medical Association. World medical association declaration of Helsinki: ethical principles for medical research involving human subjects. JAMA. 2013;310:2191–4.CrossRef World Medical Association. World medical association declaration of Helsinki: ethical principles for medical research involving human subjects. JAMA. 2013;310:2191–4.CrossRef
37.
go back to reference Gan G, Ng MKP. k -means clustering with outlier removal. Pattern Recogn Lett. 2017;90:8–14.CrossRef Gan G, Ng MKP. k -means clustering with outlier removal. Pattern Recogn Lett. 2017;90:8–14.CrossRef
38.
go back to reference Santos-Pereira CM, Pires AM. Detection of outliers in multivariate data: a method based on clustering and robust estimators. In: Härdle W, Rönz B, editors. Compstat. Heidelberg: Physica-Verlag HD; 2002. p. 291–6.CrossRef Santos-Pereira CM, Pires AM. Detection of outliers in multivariate data: a method based on clustering and robust estimators. In: Härdle W, Rönz B, editors. Compstat. Heidelberg: Physica-Verlag HD; 2002. p. 291–6.CrossRef
39.
go back to reference Henry DB, Tolan PH, Gorman-Smith D. Cluster analysis in family psychology research. J Fam Psychol. 2005;19:121–32.PubMedCrossRef Henry DB, Tolan PH, Gorman-Smith D. Cluster analysis in family psychology research. J Fam Psychol. 2005;19:121–32.PubMedCrossRef
40.
go back to reference Fisher L, Ransom DC. An empirically derived typology of families: I. relationships with adult health. Fam Process. 1995;34:161–82.PubMedCrossRef Fisher L, Ransom DC. An empirically derived typology of families: I. relationships with adult health. Fam Process. 1995;34:161–82.PubMedCrossRef
41.
go back to reference Göktas A, Isçi Ö. A comparison of the most commonly used measures of association for doubly ordered square contingency tables via simulation. Metod Zv. 2011;8:17–37. Göktas A, Isçi Ö. A comparison of the most commonly used measures of association for doubly ordered square contingency tables via simulation. Metod Zv. 2011;8:17–37.
42.
go back to reference Aron A, Aron E. Estadística Para psicólogos. Ciudad de México: Prentice Hall; 2001. Aron A, Aron E. Estadística Para psicólogos. Ciudad de México: Prentice Hall; 2001.
43.
go back to reference Sharpe D. Your chi-square test is statistically significant: now what? Pract Assess Res Eval. 2015;20:2–10. Sharpe D. Your chi-square test is statistically significant: now what? Pract Assess Res Eval. 2015;20:2–10.
44.
go back to reference Mendenhall W, Beaver R, Beaver B. Probabilidad y estadística Para las ciencias sociales del comportamiento y la salud. Ciudad de México: Cengage Learning; 2017. Mendenhall W, Beaver R, Beaver B. Probabilidad y estadística Para las ciencias sociales del comportamiento y la salud. Ciudad de México: Cengage Learning; 2017.
45.
go back to reference Ellis PD. The essential guide to effect sizes: an introduction to statistical power, meta-analysis and the interpretation of research results. Cambridge: Cambridge University Press; 2010.CrossRef Ellis PD. The essential guide to effect sizes: an introduction to statistical power, meta-analysis and the interpretation of research results. Cambridge: Cambridge University Press; 2010.CrossRef
46.
go back to reference Macedo EC, da Silva LR, Paiva MS, Ramos MNP. Burden and quality of life of mothers of children and adolescents with chronic illnesses: an integrative review. Rev Lat Am Enferm. 2015;23:769–77.CrossRef Macedo EC, da Silva LR, Paiva MS, Ramos MNP. Burden and quality of life of mothers of children and adolescents with chronic illnesses: an integrative review. Rev Lat Am Enferm. 2015;23:769–77.CrossRef
47.
go back to reference Klassen AF, Gulati S, Granek L, Rosenberg-Yunger ZRS, Watt L, Sung L, et al. Understanding the health impact of caregiving: a qualitative study of immigrant parents and single parents of children with cancer. Qual Life Res. 2012;21:1595–605.PubMedCrossRef Klassen AF, Gulati S, Granek L, Rosenberg-Yunger ZRS, Watt L, Sung L, et al. Understanding the health impact of caregiving: a qualitative study of immigrant parents and single parents of children with cancer. Qual Life Res. 2012;21:1595–605.PubMedCrossRef
48.
go back to reference Mullins LL, Wolfe-Christensen C, Chaney JM, Elkin TD, Wiener L, Hullmann SE, et al. The relationship between single-parent status and parenting capacities in mothers of youth with chronic health conditions: the mediating role of income. J Pediatr Psychol. 2011;36:249–57.PubMedCrossRef Mullins LL, Wolfe-Christensen C, Chaney JM, Elkin TD, Wiener L, Hullmann SE, et al. The relationship between single-parent status and parenting capacities in mothers of youth with chronic health conditions: the mediating role of income. J Pediatr Psychol. 2011;36:249–57.PubMedCrossRef
49.
go back to reference Coyne I, Hallström I, Söderbäck M. Reframing the focus from a family-centred to a child-centred care approach for children’s healthcare. J Child Health Care. 2016;20:494–502.PubMedCrossRef Coyne I, Hallström I, Söderbäck M. Reframing the focus from a family-centred to a child-centred care approach for children’s healthcare. J Child Health Care. 2016;20:494–502.PubMedCrossRef
50.
go back to reference Masten AS, Monn AR. Child and family resilience: a call for integrated science, practice, and professional training. Fam Relat. 2015;64:5–21.CrossRef Masten AS, Monn AR. Child and family resilience: a call for integrated science, practice, and professional training. Fam Relat. 2015;64:5–21.CrossRef
51.
go back to reference Sulkers E, Tissing WJE, Brinksma A, Roodbol PF, Kamps WA, Stewart RE, et al. Providing care to a child with cancer: a longitudinal study on the course, predictors, and impact of caregiving stress during the first year after diagnosis. Psychooncology. 2014;24:318–24.PubMedCrossRef Sulkers E, Tissing WJE, Brinksma A, Roodbol PF, Kamps WA, Stewart RE, et al. Providing care to a child with cancer: a longitudinal study on the course, predictors, and impact of caregiving stress during the first year after diagnosis. Psychooncology. 2014;24:318–24.PubMedCrossRef
52.
go back to reference Emerson L-M, Bögels S. A systemic approach to pediatric chronic health conditions: why we need to address parental stress. J Child Fam Stud. 2017;26:2347–8.CrossRef Emerson L-M, Bögels S. A systemic approach to pediatric chronic health conditions: why we need to address parental stress. J Child Fam Stud. 2017;26:2347–8.CrossRef
53.
go back to reference Pierce L, Hocking MC, Schwartz LA, Alderfer MA, Kazak AE, Barakat LP. Caregiver distress and patient health-related quality of life: psychosocial screening during pediatric cancer treatment. Psychooncology. 2016;26:1555–61.PubMedCrossRef Pierce L, Hocking MC, Schwartz LA, Alderfer MA, Kazak AE, Barakat LP. Caregiver distress and patient health-related quality of life: psychosocial screening during pediatric cancer treatment. Psychooncology. 2016;26:1555–61.PubMedCrossRef
Metadata
Title
The psychosocial profile of family caregivers of children with chronic diseases: a cross-sectional study
Authors
Filiberto Toledano-Toledano
David Luna
Publication date
01-12-2020
Publisher
BioMed Central
Published in
BioPsychoSocial Medicine / Issue 1/2020
Electronic ISSN: 1751-0759
DOI
https://doi.org/10.1186/s13030-020-00201-y

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