Quality of Life, Physical and Mental Health, and Economic Evaluation of Family Caregivers of Chronic Dependent Children: INFAPRINT Cohort Study Protocol
Abstract
:1. Introduction
1.1. Aims
1.1.1. General Aims
1.1.2. Specific Aims
- To analyse and identify the associations between social class, family income and HRQoL of children with common childhood chronic diseases;
- To determine the relationship between the HRQoL of family caregivers and that of their children;
- To analyse the association between the family care of a child and the use made of healthcare services (primary and/or specialised);
- To identify the characteristics of these caregivers and of the care provision associated with improving or worsening perceptions of physical and mental health, taking into account changes in the care burden and in the number of hours dedicated to care.
2. Materials and Methods
2.1. Setting
2.2. Participants
- -
- have difficulty managing their treatment or performing normal activities of daily living;
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- receive care and support from multiple health services;
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- present chronic physical and/or mental health problems;
- -
- frequently require unplanned or emergency care;
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- are prescribed multiple medications.
- -
- children with chronic conditions who frequently need healthcare services;
- -
- children whose activities of daily life are subject to significant limitations.
2.3. Inclusion Criteria for Caregivers
2.4. Exclusion Criteria
2.5. Data Collection
Recruitment and Monitoring of Exposed and Non-Exposed Participants
2.6. Variables
2.6.1. Sociodemographic Variables
2.6.2. Economic Variables
2.6.3. Quality of Life and Mental Health
2.7. Data Analysis
3. Discussion
4. Limitations
5. Conclusions
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Conflicts of Interest
References
- OMS. Enfermedades No Transmisibles. Who. 2017. p. 1. Available online: https://www.who.int/es/news-room/fact-sheets/detail/noncommunicable-diseases (accessed on 5 October 2021).
- Kernick, D.; Chew-Graham, C.A.; O’Flynn, N. Clinical assessment and management of multimorbidity: NICE guideline. Br. J. Gen. Pract. 2017, 67, 235–236. [Google Scholar] [CrossRef] [PubMed] [Green Version]
- Problemas o Enfermedades Crónicas o de Larga Evolución en los Últimos 12 Meses en Población Infantil Según Sexo y Grupo de Edad. Población de 0 a 14 Años. Available online: https://www.ine.es/jaxi/Tabla.htm?path=/t15/p419/a2017/p04/l0/&file=02024.px&L=0 (accessed on 12 January 2023).
- Fearnley, R.; Boland, J.W. Communication and support from health-care professionals to families, with dependent children, following the diagnosis of parental life-limiting illness: A systematic review. Palliat. Med. 2017, 31, 212–222. [Google Scholar] [CrossRef] [PubMed] [Green Version]
- Werner-Lin, A.; Biank, N.M. Along the Cancer Continuum: Integrating Therapeutic Support and Bereavement Groups for Children and Teens of Terminally Ill Cancer Patients. J. Fam. Soc. Work. 2009, 12, 359–370. [Google Scholar] [CrossRef]
- Ernst, J.; Götze, H.; Brähler, E.; Körner, A.; Hinz, A. Quality of life of parents diagnosed with cancer: Change over time and influencing factors. Eur. J. Cancer Care 2012, 21, 535–541. [Google Scholar] [CrossRef]
- de Paula, É.S.; Nascimento, L.C.; Rocha, S.M. Role assessment in families of children with chronic renal failure on peritoneal dialysis. Int. J. Nurs. Pract. 2008, 14, 215–220. [Google Scholar] [CrossRef] [PubMed]
- Morrow, A.M.; Hayen, A.; Quine, S.; Scheinberg, A.; Craig, J.C. A comparison of doctors’, parents’ and children’s reports of health states and health-related quality of life in children with chronic conditions. Child Care Health Dev. 2012, 38, 186–195. [Google Scholar] [CrossRef]
- Turner, J.; Clavarino, A.; Yates, P.; Connors, V.; Hargraves, M.; Hausmann, S. Development of a resource for parents with advanced cancer: What do parents want? Palliat. Support Care 2007, 5, 135–145. [Google Scholar] [CrossRef]
- Haneef, Z.; Grant, M.L.; Valencia, I.; Hobdell, E.F.; Kothare, S.V.; Legido, A.; Khurana, D. Correlation between child and parental perceptions of health-related quality of life measurement model. Epileptic Disord. 2010, 12, 275–282. [Google Scholar]
- Flórez-Torres, I.E.; Montalvo-Prieto, A.; Herrera-Lían, A.; Romero-Massa, E. Afectación de los bienestares en cuidadores de niños y adultos con enfermedad crónica. Rev. Salud Pública 2011, 12, 754–764. [Google Scholar] [CrossRef] [Green Version]
- Rehm, S.R. Nursing’s contribution to research about parenting children with complex chronic conditions: An integrative review, 2002 to 2012. Nurs. Outlook 2013, 61, 266–290. [Google Scholar] [CrossRef]
- Macedo, E.C.; Da Silva, L.R.; Paiva, M.S.; Ramos, M.N.P. Burden and quality of life of mothers of children and adolescents with chronic illnesses: An integrative review 1. Rev. Lat. Am. Enferm. 2015, 23, 769–777. [Google Scholar] [CrossRef] [PubMed] [Green Version]
- Didsbury, M.S.; Kim, S.; Medway, M.M.; Tong, A.; McTaggart, S.J.; Walker, A.M.; White, S.; Mackie, F.E.; Kara, T.; Craig, J.C.; et al. Socio-economic status and quality of life in children with chronic disease: A systematic review. J. Paediatr. Child Health 2016, 52, 1062–1069. [Google Scholar] [CrossRef]
- Fernández, D.L.H.K.; Leon, D.A. Self-perceived health status and inequalities in use of health services in Spain. Int. J. Epidemiol. 1996, 25, 593–603. [Google Scholar]
- Ruijsbroek, A.; Wijga, A.H.; Kerkhof, M.; Koppelman, G.H.; Smit, H.A.; Droomers, M. The development of socio-economic health differences in childhood: Results of the Dutch longitudinal PIAMA birth cohort. BMC Public Health 2011, 11, 225. [Google Scholar] [CrossRef] [Green Version]
- Goodman, E. The role of socioeconomic status gradients in explaining differences in US adolescents’ health. Am. J. Public Health 1999, 89, 1522–1528. [Google Scholar] [CrossRef] [PubMed] [Green Version]
- Najman, J.; Bor, W.; Morrison, J.; Andersen, M.; Williams, G. Child developmental delay and socio-economic disadvantage in Australia: A longitudinal study. Soc. Sci. Med. 2002, 34, 829–835. [Google Scholar] [CrossRef] [Green Version]
- Wittenberg, E.; Prosser, L.A. Disutility of illness for caregivers and families: A systematic review of the literature. Pharmacoeconomics 2013, 31, 489–500. [Google Scholar] [CrossRef] [Green Version]
- Bobinac, A.; van Exel, N.J.A.; Rutten, F.F.H.; Brouwer, W.B.F. Caring for and caring about: Disentangling the caregiver effect and the family effect. J. Health Econ. 2010, 29, 549–556. [Google Scholar] [CrossRef]
- Wittenberg, E.; Ritter, G.A.; Prosser, L.A. Evidence of spillover of illness among household members: EQ-5D scores from a US sample. Med. Decis. Mak. 2013, 33, 235–243. [Google Scholar] [CrossRef] [Green Version]
- Lavelle, T.A.; Wittenberg, E.; Lamarand, K.; Prosser, L.A. Variation in the Spillover Effects of Illness on Parents, Spouses, and Children of the Chronically Ill. Appl. Health Econ. Health Policy 2014, 12, 117–124. [Google Scholar] [CrossRef] [Green Version]
- Cohen, E.; Kuo, D.Z.; Agrawal, R.; Berry, J.G.; Bhagat, S.K.M.; Simon, T.D.; Srivastava, R. Children with Medical Complexity: An Emerging Population for Clinical and Research Initiatives. Pediatrics 2011, 127, 529–538. [Google Scholar] [CrossRef] [PubMed] [Green Version]
- Feudtner, C.; Feinstein, J.A.; Satchell, M.; Zhao, H.; Kang, T.I. Shifting Place of Death Among Children with Complex Chronic Conditions in the United States, 1989–2003. JAMA 2007, 297, 2725–2732. [Google Scholar] [CrossRef] [PubMed] [Green Version]
- Ministerio de Sanidad, Servicios Sociales e Igualdad. CIE-10-ES: Clasificación Internacional de Enfermedades–10.Œ Revisión: Modificación Clínica, 2nd ed.; Ministerio de Sanidad, Servicios Sociales e Igualdad: Madrid, Spain, 2018. [Google Scholar]
- Cohn, L.N.; Pechlivanoglou, P.; Lee, Y.; Mahant, S.; Orkin, J.; Marson, A.; Cohen, E. Health Outcomes of Parents of Children with Chronic Illness: A Systematic Review and Meta-Analysis. J. Pediatr. 2020, 218, 166–177.e2. [Google Scholar] [CrossRef] [PubMed]
- Smilkstein, G. The Family APGAR: A Proposal for a Family Function Test and Its Use by Physicians. J. Fam. Pract. 1978, 6, 1231–1239. [Google Scholar] [PubMed]
- Domingo-Salvany, A.; Regidor, E.; Alonso, J.; Álvarez-Dardet, C. Proposal for a social class measure. Working Group of the Spanish Society of Epidemiology and the Spanish Society of Family and Community Medicine. Aten. Primaria 2000, 25, 350–363. [Google Scholar] [PubMed]
- Junta de Andalucía. Junta de Andalucía—Datos Abiertos: Catálogo de Datos. 2020. Available online: https://www.juntadeandalucia.es/datosabiertos/portal/dataset/precios-publicos-de-servicios-sanitarios-prestados-en-el-sspa (accessed on 12 November 2021).
- Diez-Quevedo, C.; Rangil, T.; Sanchez-Planell, L.; Kroenke, K.; Spitzer, R.L. Validation and Utility of the Patient Health Questionnaire in Diagnosing Mental Disorders in 1003 General Hospital Spanish Inpatients. Psychosom. Med. 2001, 63, 679–686. [Google Scholar] [CrossRef]
- Garcia-Campayo, J.; Zamorano, E.; Ruiz, M.A.; Pardo, A.; Perez-Paramo, M.; Lopez-Gomez, V.; Freire, O.; Rejas, J. Cultural adaptation into Spanish of the generalized anxiety disorder-7 (GAD-7) scale as a screening tool. Health Qual. Life Outcomes 2010, 8, 8. [Google Scholar] [CrossRef] [Green Version]
- Girabent-Farrés, M.; Bagur-Calafat, C.; Amor-Barbosa, M.; Natera-De Benito, D.; Medina-Rincón, A.; Fagoaga, J. Spanish Translation and Validation of the Neuromuscular Module of the Pediatric Quality of Life Inventory (PedsQL): Evaluation of the Quality of Life Perceived by 5–7 Years Old Children with Neuromuscular Disorders and by Their Parents. Rev. Neurol. 2019, 69, 442–452. [Google Scholar]
- Vilagut, G.; Ferrer, M.; Rajmil, L.; Rebollo, P.; Permanyer-Miralda, G.; Quintana, J.M.; Alonso, J. The Spanish Version of the Short Form 36 Health Survey: A Decade of Experience and New Developments. Gac. Sanit. 2005, 19, 135–150. [Google Scholar] [CrossRef] [Green Version]
- Robinson, B.C. Validation of a Caregiver Strain Index. J. Gerontol. 1983, 38, 344–348. [Google Scholar] [CrossRef]
- Motrico, E.; Rodero-Cosano, M.L.; Álvarez-Gálvez, J.; Salinas-Pérez, J.A.; Moreno-Peral, P. Instrumentos de evaluación de los eventos vitales estresantes en población española adulta: Una revisión sistemática. An. Psicol. Univ. Murcia Serv. Publ. 2017, 33, 556–567. [Google Scholar]
- Cousino, M.K.; Hazen, R.A. Parenting Stress Among Caregivers of Children with Chronic Illness: A Systematic Review. J. Pediatr. Psychol. 2013, 38, 809–828. [Google Scholar] [CrossRef] [Green Version]
- Darwish, M.M.; Hassan, S.H.; Taha, S.F.; Abd El-Megeed, H.S.; Ismail, T.A.A.M. Family impact and economic burden among caregivers of children with chronic kidney disease in Assiut, Egypt. J. Egypt Public Health Assoc. 2020, 95, 27. [Google Scholar] [CrossRef]
- Berry, J.G.; Hall, M.; Neff, J.; Goodman, D.; Cohen, E.; Agrawal, R.; Kuo, D.; Feudtner, C.; Colvin, J.D.; Richardson, T.; et al. Children WITH Medical Complexity And Medicaid: Spending And Cost Savings. Health Aff. 2014, 33, 2199–2206. [Google Scholar] [CrossRef] [Green Version]
- Foster, C.C.; Shaunfield, S.; Black, L.E.; Labellarte, P.Z.; Davis, M.M. Improving support for care at home: Parental needs and preferences when caring for children with medical complexity. J. Pediatr. Health Care 2021, 36, 154–164. [Google Scholar] [CrossRef] [PubMed]
- Masaba, B.B.; Taiswa, J.; Mmusi-Phetoe, R.M. Challenges of Caregivers Having Children with Autism in Kenya: Systematic Review. Iran. J. Nurs. Midwifery Res. 2021, 26, 373–379. [Google Scholar] [PubMed]
Examples | CIE-10 Codes | |
---|---|---|
Group 1 | ||
Conditions that are life threatening or those with feasible treatment but that with possibility of failure. | Cancer, irreversible organic failure: heart, liver, kidney. | G89.X |
Group 2 | ||
Conditions where premature death is unavoidable, or where there may be long periods of intensive treatment with the goal of prolonging life and allowing participation in normal activities. | Severe immunodeficiencies, renal failure without the possibility of transplantation or dialysis. Severe or chronic respiratory failure (cystic fibrosis, HIV, muscular dystrophy). | D80-D89, N17-N19, T82.41, Z71.7, Z13.228, GT71.0 |
Group 3 | ||
Progressive conditions without curative treatment options, or where palliative treatment may extend for several years. | Mucopolysaccharosis and other severe metabolic diseases, severe chromosomal disorders, neuromuscular diseases, severe osteogenesis imperfecta (Batten disease, spinal muscular atrophy, trisomy 13 or trisomy 18, severe infant suffocation) | E00-E89, Q00-Q99, G70.X, E75.X |
Group 4 | ||
Irreversible, but not progressive, conditions that cause severe disabilities leading to susceptibility to health complications and the likelihood of premature death. | Severe cerebral palsy, multiple disabilities, such as after a brain or spinal cord injury, complex health care needs, and a high risk of an unpredictable and life-threatening event or episode. Severe neurological diseases, severe brain malformations, hypoxic brain damage. | F06.X, I63.X, I67.X, Q28.X |
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León-Campos, Á.; García-Mayor, S.; Martí-García, C.; Morilla-Herrera, J.C.; Morales-Asencio, J.M.; Lupiáñez-Pérez, I.; Pérez-Ardanaz, B.; Cuevas Fernandez-Gallego, M. Quality of Life, Physical and Mental Health, and Economic Evaluation of Family Caregivers of Chronic Dependent Children: INFAPRINT Cohort Study Protocol. Int. J. Environ. Res. Public Health 2023, 20, 5081. https://doi.org/10.3390/ijerph20065081
León-Campos Á, García-Mayor S, Martí-García C, Morilla-Herrera JC, Morales-Asencio JM, Lupiáñez-Pérez I, Pérez-Ardanaz B, Cuevas Fernandez-Gallego M. Quality of Life, Physical and Mental Health, and Economic Evaluation of Family Caregivers of Chronic Dependent Children: INFAPRINT Cohort Study Protocol. International Journal of Environmental Research and Public Health. 2023; 20(6):5081. https://doi.org/10.3390/ijerph20065081
Chicago/Turabian StyleLeón-Campos, Álvaro, Silvia García-Mayor, Celia Martí-García, Juan Carlos Morilla-Herrera, José Miguel Morales-Asencio, Inmaculada Lupiáñez-Pérez, Bibiana Pérez-Ardanaz, and Magdalena Cuevas Fernandez-Gallego. 2023. "Quality of Life, Physical and Mental Health, and Economic Evaluation of Family Caregivers of Chronic Dependent Children: INFAPRINT Cohort Study Protocol" International Journal of Environmental Research and Public Health 20, no. 6: 5081. https://doi.org/10.3390/ijerph20065081
APA StyleLeón-Campos, Á., García-Mayor, S., Martí-García, C., Morilla-Herrera, J. C., Morales-Asencio, J. M., Lupiáñez-Pérez, I., Pérez-Ardanaz, B., & Cuevas Fernandez-Gallego, M. (2023). Quality of Life, Physical and Mental Health, and Economic Evaluation of Family Caregivers of Chronic Dependent Children: INFAPRINT Cohort Study Protocol. International Journal of Environmental Research and Public Health, 20(6), 5081. https://doi.org/10.3390/ijerph20065081