Caregiver Burden and Family Quality of Life in Early Intervention: The Role of Mothers and Family Confidence
Abstract
:1. Introduction
- -
- Analyze caregiver burden and family confidence as predictors of FQoL together with child- and family-level factors in order to investigate their interaction role with family confidence.
- -
- Analyze the influence of child severity and caregiver burden on FQoL, with and without the mediating influence of family confidence.
2. Materials and Methods
2.1. Participants
2.2. Procedure
2.3. Instruments
2.3.1. Family Quality of Life
2.3.2. Caregiver Burden
2.3.3. Family Confidence in Early Intervention
2.4. Data Analysis
3. Results
4. Discussion
4.1. Limitations
4.2. Implications
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Acknowledgments
Conflicts of Interest
References
- Shalock, R.L. Moving from Individual to Family Quality of Life as a Research Topic. In Families and People with Mental Retardation and Quality of Life: International Perspectives; American Association on Mental Retardation: Washington, DC, USA, 2004; pp. 11–24. [Google Scholar]
- Schalock, R.L.; Verdugo, M.Á. El concepto de calidad de vida en los servicios y apoyos para personas con discapacidad intelectual. Siglo Cero Rev. Esp. Sobre Discapac. Intelect. 2007, 38, 21–36. [Google Scholar]
- Bailey, D.B.; Bruder, M.B.; Hebbeler, K.; Carta, J.; Defosset, M.; Greenwood, C.; Kahn, L.; Mallik, S.; Markowitz, J.; Spiker, D.; et al. Recommended Outcomes for Families of Young Children with Disabilities. J. Early Interv. 2006, 28, 227–251. [Google Scholar] [CrossRef]
- Zuna, N.; Summers, J.A.; Turnbull, A.P.; Hu, X.; Xu, S. Theorizing About Family Quality of Life. In Enhancing the Quality of Life of People with Intellectual Disabilities; Kober, R., Ed.; Social Indicators Research Series; Springer: Dordrecht, The Netherlands, 2010; Volume 41, pp. 241–278. ISBN 978-90-481-9649-4. [Google Scholar]
- Zuna, N.I.; Brown, I.; Brown, R.I. Family Quality of Life in Intellectual and Developmental Disabilities: A Support-Based Framework to Enhance Quality of Life in Other Families. In Quality of Life and Intellectual Disability: Knowledge Application to Other Social and Educational Challenges; Brown, R.I., Faragher, R.M., Eds.; Nova Science Publishers: New York, NY, USA, 2014; pp. 91–119. [Google Scholar]
- Division for Early Childhood of the Council for Exceptional Children; National Association for the Education of Young Children; National Head Start Association. Frameworks for Response to Intervention in Early Childhood: Description and Implications. Commun. Disord. Q. 2014, 35, 108–119. [Google Scholar] [CrossRef]
- Turnbull, A.P.; Pereira, L.; Blue-Banning, M.J. Parents’ Facilitation of Friendships between Their Children with a Disability and Friends without a Disability. Res. Pract. Pers. Sev. Disabil. 1999, 24. [Google Scholar] [CrossRef]
- García-Grau, P.; McWilliam, R.A.; Martínez-Rico, G.; Morales-Murillo, C.P. Child, Family, and Early Intervention Characteristics Related to Family Quality of Life in Spain. J. Early Interv. 2019, 41, 44–61. [Google Scholar] [CrossRef]
- Hoffman, L.; Marquis, J.; Poston, D.; Summers, J.A.; Turnbull, A. Assessing Family Outcomes: Psychometric Evaluation of the Beach Center Family Quality of Life Scale. J. Marriage Fam. 2006, 68, 1069–1083. [Google Scholar] [CrossRef]
- Brown, R.I.; MacAdam-Crisp, J.; Wang, M.; Iarocci, G. Family Quality of Life When There Is a Child With a Developmental Disability. J. Policy Pract. Intellect. Disabil. 2006, 3, 238–245. [Google Scholar] [CrossRef]
- Isaacs, B.J.; Brown, I.; Brown, R.I.; Baum, N.; Myerscough, T.; Neikrug, S.; Roth, D.; Shearer, J.; Wang, M. The International Family Quality of Life Project: Goals and Description of a Survey Tool. J. Policy Pract. Intellect. Disabil. 2007, 4, 177–185. [Google Scholar] [CrossRef]
- Balcells-Balcells, A.; Giné, C.; Guàrdia-Olmos, J.; Summers, J.A.; Mas, J.M. Impact of Supports and Partnership on Family Quality of Life. Res. Dev. Disabil. 2019, 85, 50–60. [Google Scholar] [CrossRef]
- Davis, K.; Gavidia-Payne, S. The Impact of Child, Family, and Professional Support Characteristics on the Quality of Life in Families of Young Children with Disabilities. J. Intellect. Dev. Disabil. 2009, 34, 153–162. [Google Scholar] [CrossRef]
- Wang, M.; Turnbull, A.P.; Summers, J.A.; Little, T.D.; Poston, D.J.; Mannan, H.; Turnbull, R. Severity of Disability and Income as Predictors of Parents’ Satisfaction with Their Family Quality of Life during Early Childhood Years. Res. Pract. Pers. Sev. Disabil. 2004, 29, 82–94. [Google Scholar] [CrossRef]
- García-Grau, P.; McWilliam, R.A.; Martínez-Rico, G.; Morales-Murillo, C.P. Rasch Analysis of the Families in Early Intervention Quality of Life (FEIQoL) Scale. Appl. Res. Qual. Life 2021, 16, 383–399. [Google Scholar] [CrossRef]
- Giné, C.; Vilaseca, R.; Gràcia, M.; Mora, J.; Ramón Orcasitas, J.; Simón, C.; María Torrecillas, A.; Beltran, F.S.; Dalmau, M.; Teresa Pro, M.; et al. Spanish Family Quality of Life Scales: Under and over 18 Years Old. J. Intellect. Dev. Disabil. 2013, 38, 141–148. [Google Scholar] [CrossRef] [PubMed]
- Mas, J.M.; Baqués, N.; Balcells-Balcells, A.; Dalmau, M.; Giné, C.; Gràcia, M.; Vilaseca, R. Family Quality of Life for Families in Early Intervention in Spain. J. Early Interv. 2016, 38, 59–74. [Google Scholar] [CrossRef]
- Kaçan Softa, H.; Öztürk, A.; Sonkaya, C.; Düşünceli, H. Zihinsel Engelli Çocuğu Olan Anne ve Babaların Aile Yükü ve Yaşam Doyumlarının Incelenmesi. 2016. Available online: https://acikerisim.bartin.edu.tr/handle/11772/1214 (accessed on 2 May 2024).
- Marsack-Topolewski, C.N.; Church, H.L. Impact of Caregiver Burden on Quality of Life for Parents of Adult Children with Autism Spectrum Disorder. Am. J. Intellect. Dev. Disabil. 2019, 124, 145–156. [Google Scholar] [CrossRef] [PubMed]
- Barros, A.L.O.; De Gutierrez, G.M.; Barros, A.O.; Santos, M.T.B.R. Quality of Life and Burden of Caregivers of Children and Adolescents with Disabilities. Spec. Care Dentist. 2019, 39, 380–388. [Google Scholar] [CrossRef] [PubMed]
- Medina, P.S.; García-Grau, P.; Gutiérrez-Ortega, M.; León-Estrada, I. Atención Temprana Centrada En La Familia: Confianza, Competencia y Calidad de Vida Familiar. Psychol. Soc. Educ. 2022, 14, 39–47. [Google Scholar] [CrossRef]
- Sloper, P.; Turner, S. Service Needs of Families of Children with Severe Physical Disability. Child Care Health Dev. 1992, 18, 259–282. [Google Scholar] [CrossRef]
- McCubbin, H.I.; Cauble, A.E.; Patterson, J.M. Family Stress, Coping, and Social Support; Charles C Thomas Pub Ltd.: Springfield, IL, USA, 1982. [Google Scholar]
- Dunst, C.J.; Hamby, D.W.; Brookfield, J. Modeling the Effects of Early Childhood Intervention Variables on Parent and Family Well-Being. J. Appl. Quant. Methods 2007, 2, 268–288. [Google Scholar]
- McWilliam, R.A. The Routines-Based Model for Supporting Speech and Language. Rev. Logop. Foniatría Audiol. 2016, 36, 178–184. [Google Scholar] [CrossRef]
- Dunst, C.J.; Trivette, C.M.; Hamby, D.W. Research Synthesis and Meta-Analysis of Studies of Family-Centered Practices; Winterberry Press Monograph Series; ERIC: Washington, DC, USA, 2008. [Google Scholar]
- Martínez-Rico, G.; García-Grau, P.; Cañadas, M.; González-García, R.J. Social Validity of Telepractice in Early Intervention: Effectiveness of Family-centered Practices. Fam. Relat. 2023, 72, 2535–2550. [Google Scholar] [CrossRef]
- Dunst, C.J.; Bruder, M.B.; Espe-Sherwindt, M. Family Capacity-Building in Early Childhood Intervention: Do Context and Setting Matter? Sch. Community J. 2014, 24, 37–48. [Google Scholar]
- Swanson, J.; Raab, M.; Dunst, C.J. Strengthening Family Capacity to Provide Young Children Everyday Natural Learning Opportunities. J. Early Child. Res. 2011, 9, 66–80. [Google Scholar] [CrossRef]
- Dunst, C.J.; Trivette, C.M.; Humphries, T.; Raab, M.; Roper, N. Contrasting Approaches to Natural Learning Environment Interventions. Infants Young Child. 2001, 14, 48–63. [Google Scholar] [CrossRef]
- García-Grau, P.; McWilliam, R.A.; Martínez-Rico, G.; Grau-Sevilla, M.D. Factor Structure and Internal Consistency of a Spanish Version of the Family Quality of Life (FaQoL). Appl. Res. Qual. Life 2018, 13, 385–398. [Google Scholar] [CrossRef]
- Summers, J.A.; Poston, D.J.; Turnbull, A.P.; Marquis, J.; Hoffman, L.; Mannan, H.; Wang, M. Conceptualizing and Measuring Family Quality of Life. J. Intellect. Disabil. Res. 2005, 49, 777–783. [Google Scholar] [CrossRef]
- Escorcia Mora, C.; Garcia-Grau, P.; Martínez-Rico, G.; González-García, R.; Cañadas, M. Equidad de Género En La Crianza: La Importancia de La Participación Paterna En La Reducción de La Sobrecarga. In Actualidad en Investigación para la Mejora de la salud a lo Largo del Ciclo Vital; Dykinson: Madrid, Spain, 2024; pp. 285–298. ISBN 978-84-11-70858-6. [Google Scholar]
- Zarit, S.H.; Reever, K.E.; Bach-Peterson, J. Relatives of the Impaired Elderly: Correlates of Feelings of Burden. Gerontologist 1980, 20, 649–655. [Google Scholar] [CrossRef]
- Montorio Cerrato, I.; Fernández de Trocóniz, M.I.; López López, A.; Sánchez Colodrón, M. La Entrevista de Carga Del Cuidador. Utilidad y Validez Del Concepto de Carga. In Anales de Psicología; Universidad de Murcia, Servicio de Publicaciones: Murcia, Spain, 1998. [Google Scholar]
- Pardo, X.M.; Cárdenas, S.J.; Cruz, A.V.; Venegas, J.M.; Magaña, I.M. Escala de Carga Del Cuidador de Zarit: Evidencia de Validez En México. Psicooncología 2014, 11, 71. [Google Scholar]
- Ballesteros, J.; Santos, B.; González-Fraile, E.; Muñoz-Hermoso, P.; Domínguez-Panchón, A.I.; Martín-Carrasco, M. Unidimensional 12-Item Zarit Caregiver Burden Interview for the Assessment of Dementia Caregivers’ Burden Obtained by Item Response Theory. Value Health 2012, 15, 1141–1147. [Google Scholar] [CrossRef]
- Gort, A.M.; Mingot, M.; Gomez, X.; Soler, T.; Torres, G.; Sacristán, O.; Miguelsanz, S.; Nicolas, F.; Perez, A.; De Miguel, M.; et al. Use of the Zarit Scale for Assessing Caregiver Burden and Collapse in Caregiving at Home in Dementias. Int. J. Geriatr. Psychiatry 2007, 22, 957–962. [Google Scholar] [CrossRef]
- Higginson, I.J.; Gao, W.; Jackson, D.; Murray, J.; Harding, R. Short-Form Zarit Caregiver Burden Interviews Were Valid in Advanced Conditions. J. Clin. Epidemiol. 2010, 63, 535–542. [Google Scholar] [CrossRef]
- IBM Corp. IBM SPSS Statistics for Windows; IBM Corp.: Armonk, NY, USA, 2017. [Google Scholar]
- Team, J. JASP; Version 0.16. 3; [Computer Software]. View Article; University of Amsterdam: Amsterdam, The Netherlands, 2022. [Google Scholar]
- Wang, M.; Brown, R. Family Quality of Life: A Framework for Policy and Social Service Provisions to Support Families of Children with Disabilities. In Family Support and Family Caregiving across Disabilities; Routledge: London, UK, 2014; pp. 162–185. [Google Scholar]
- Ketelaar, M.; Volman, M.J.M.; Gorter, J.W.; Vermeer, A. Stress in Parents of Children with Cerebral Palsy: What Sources of Stress Are We Talking About? Child Care Health Dev. 2008, 34, 825–829. [Google Scholar] [CrossRef]
- Parkes, J.; McCullough, N.; Madden, A.; McCahey, E. The Health of Children with Cerebral Palsy and Stress in Their Parents. J. Adv. Nurs. 2009, 65, 2311–2323. [Google Scholar] [CrossRef]
- Pousada, M.; Guillamón, N.; Hernández-Encuentra, E.; Muñoz, E.; Redolar, D.; Boixadós, M.; Gómez-Zúñiga, B. Impact of Caring for a Child with Cerebral Palsy on the Quality of Life of Parents: A Systematic Review of the Literature. J. Dev. Phys. Disabil. 2013, 25, 545–577. [Google Scholar] [CrossRef]
- Mas, J.M.; Giné, C.; McWilliam, R.A. The Adaptation Process of Families with Children with Intellectual Disabilities in Catalonia. Infants Young Child. 2016, 29, 335–351. [Google Scholar] [CrossRef]
- Santos, M.T.B.R.; Biancardi, M.; Guare, R.O.; Jardim, J.R. ARTICLE: Caries Prevalence in Patients with Cerebral Palsy and the Burden of Caring for Them. Spec. Care Dentist. 2010, 30, 206–210. [Google Scholar] [CrossRef]
- Hu, X.; Wang, M.; Fei, X. Family Quality of Life of Chinese Families of Children with Intellectual Disabilities. J. Intellect. Disabil. Res. 2012, 56, 30–44. [Google Scholar] [CrossRef]
- Dunst, C.J.; Trivette, C.M.; Snyder, D.M. Family-Professional Partnerships: A Behavioral Science Perspective. Collab. Parents Fam. Child. Youth Except. 2000, 2, 27–48. [Google Scholar]
- Leung, D.Y.; Chan, H.Y.; Chiu, P.K.; Lo, R.S.; Lee, L.L. Source of Social Support and Caregiving Self-Efficacy on Caregiver Burden and Patient’s Quality of Life: A Path Analysis on Patients with Palliative Care Needs and Their Caregivers. Int. J. Environ. Res. Public. Health 2020, 17, 5457. [Google Scholar] [CrossRef]
- Mohamed Mahmoud, A.; Helmy Osman, L.; Mohamed El-Sayed Gaafar, M.; Ibrahim Hassan Gomaa, N. Depression, Burden, and Self-Efficacy among Caregiving Parents of Children with Cancer. Egypt. J. Health Care 2022, 13, 385–401. [Google Scholar] [CrossRef]
- Mystakidou, K.; Tsilika, E.; Parpa, E.; Gogou, P.; Panagiotou, I.; Vassiliou, I.; Gouliamos, A. Relationship of General Self-efficacy with Anxiety, Symptom Severity and Quality of Life in Cancer Patients before and after Radiotherapy Treatment. Psycho-Oncology 2013, 22, 1089–1095. [Google Scholar] [CrossRef] [PubMed]
- Kabat-Zinn, J. Mindfulness-Based Interventions in Context: Past, Present, and Future; American Psychological Association: Washington, DC, USA, 2003. [Google Scholar]
- Lo, H.H.M.; Chan, S.K.C.; Szeto, M.P.; Chan, C.Y.H.; Choi, C.W. A Feasibility Study of a Brief Mindfulness-Based Program for Parents of Preschool Children with Developmental Disabilities. Mindfulness 2017, 8, 1665–1673. [Google Scholar] [CrossRef]
N | M | SD | Min | Max | |
---|---|---|---|---|---|
Mother–Child Interaction Time | 55 | 4.24 | 0.98 | 2 | 5 |
Father–Child interaction Time | 53 | 3.26 | 1.18 | 1 | 5 |
Adult’s Age | 58 | 36.52 | 9.45 | 2 | 56 |
Child’s age | 57 | 43.42 | 18.64 | 3 | 81 |
Child’s support needs (1–5) | 56 | 3.43 | 1.17 | 1 | 5 |
Child’s functioning Level (1–5) | 57 | 4.16 | 2.99 | 2 | 24 |
Time in ECI | 55 | 16.56 | 12.49 | 1 | 48 |
N | % | ||||
Family Monthly Income | |||||
Less than EUR 600 | 6 | 11.3 | |||
From EUR 600 to EUR 1200 | 10 | 18.9 | |||
From EUR 1200 to EUR 1800 | 17 | 32.1 | |||
From EUR 1800 to EUR 2500 | 7 | 13.2 | |||
From EUR 2500 to EUR 5000 | 9 | 17 | |||
More than EUR 5000 | 4 | 7.5 | |||
Did not answer | 5 | 8.6 | |||
Total | 58 | 100 | |||
Respondent’s relationship with the child | |||||
Grandmother | 2 | 3.4 | |||
Mother | 34 | 58.6 | |||
Father | 10 | 17.2 | |||
Both Mother and Father completed questionnaire | 11 | 19 | |||
Total | 58 | 100 | |||
Adult’s Gender | |||||
Man | 14 | 24.1 | |||
Woman | 44 | 75.9 | |||
Total | 58 | 100 | |||
Child’s gender | |||||
Boy | 42 | 72.4 | |||
Girl | 16 | 27.6 | |||
Total | 58 | 100 |
Variable | 1 | 2 | 3 | 4 | 5 | 6 | 7 |
---|---|---|---|---|---|---|---|
1. Support needs | — | ||||||
2. Severity | 0.384 ** | — | |||||
3. Income | −0.219 | −0.183 | — | ||||
4. Burden | 0.367 ** | 0.213 | −0.174 | — | |||
5. CHC | −0.461 *** | −0.469 *** | 0.412 ** | −0.135 | — | ||
6. CHF | −0.334 * | −0.348 * | 0.430 ** | −0.384 ** | 0.611 *** | — | |
7. FEIQoL | −0.232 | −0.362 * | 0.359 * | −0.405 ** | 0.439 ** | 0.656 *** | — |
Model’s Global Test | ||||||||
---|---|---|---|---|---|---|---|---|
Model | R | R2 | R2 Adjusted | RMSE | F | df1 | df2 | p |
1 | 0.461 | 0.212 | 0.146 | 0.727 | 3.231 | 3 | 36 | 0.034 |
2 | 0.719 | 0.516 | 0.445 | 0.570 | 7.262 | 5 | 34 | < 0.001 |
3 | 0.757 | 0.573 | 0.495 | 0.536 | 7.383 | 6 | 33 | < 0.001 |
Model | Estimate | SE | t | p | β |
---|---|---|---|---|---|
Model 1 | |||||
Constant a | 3.300 | 0.536 | 6.153 | <0.001 | |
Adult Sex (Mothers) | −0.019 | 0.282 | −0.068 | 0.946 | −0.023 |
Support Needs | −0.143 | 0.102 | −1.410 | 0.167 | −0.214 |
Income | 0.208 | 0.087 | 2.396 | 0.022 | 0.363 |
Model 2 | |||||
Constant a | 2.215 | 0.803 | 2.760 | 0.009 | |
Adult Sex (Mothers) | 0.015 | 0.227 | 0.067 | 0.947 | 0.018 |
Support Needs | −0.018 | 0.087 | −0.208 | 0.837 | −0.027 |
Income | 0.099 | 0.076 | 1.302 | 0.202 | 0.173 |
Burden | −0.395 | 0.183 | −2.162 | 0.038 | −0.286 |
CHF | 0.639 | 0.197 | 3.236 | 0.003 | 0.461 |
Model 3 | |||||
Constant a | 4.527 | 1.344 | 3.369 | 0.002 | |
Adult Sex (Mothers) | −3.020 | 1.467 | −2.059 | 0.047 | −0.047 |
Support Needs | 0.021 | 0.085 | 0.246 | 0.808 | 0.031 |
Income | 0.136 | 0.075 | 1.819 | 0.078 | 0.237 |
Burden | −0.347 | 0.176 | −1.975 | 0.057 | −0.252 |
CHF | −0.299 | 0.486 | −0.615 | 0.543 | −0.216 |
CHF × Adult Sex (Mothers) | 1.074 | 0.513 | 2.093 | 0.044 | 0.775 |
95% CI | ||||||||||
---|---|---|---|---|---|---|---|---|---|---|
Predictor | M | DV | Estimate | SE | z | p | Lower | Upper | ||
Direct effects | ||||||||||
Burden | → | FEIQoL | −0.358 | 0.226 | −1.584 | 0.113 | −0.802 | 0.085 | ||
Severity | → | FEIQoL | −0.185 | 0.132 | −1.407 | 0.159 | 0.073 | −0.444 | ||
Indirect effects | ||||||||||
Burden | → | CHF | → | FEIQoL | −0.286 | 0.130 | −2.203 | 0.028 | −0.541 | −0.032 |
Severity | → | CHF | → | FEIQoL | −0.157 | 0.072 | −2.168 | 0.030 | −0.015 | −0.298 |
Total effects | ||||||||||
Burden | → | FEIQoL | −0.645 | 0.204 | −3.158 | 0.002 | −1.045 | −0.245 | ||
Severity | → | FEIQoL | −0.342 | 0.138 | −2.473 | 0.013 | −0.071 | −0.613 | ||
Path coefficients | ||||||||||
ConFamCAF | → | FEIQoL | 0.517 | 0.119 | 4.354 | <0.001 | 0.284 | 0.750 | ||
Burden | → | CHF | −0.554 | 0.206 | −2.683 | 0.007 | −0.958 | −0.149 | ||
Severity | → | CHF | −0.303 | 0.131 | −2.316 | 0.021 | −0.046 | −0.559 |
Disclaimer/Publisher’s Note: The statements, opinions and data contained in all publications are solely those of the individual author(s) and contributor(s) and not of MDPI and/or the editor(s). MDPI and/or the editor(s) disclaim responsibility for any injury to people or property resulting from any ideas, methods, instructions or products referred to in the content. |
© 2024 by the authors. Licensee MDPI, Basel, Switzerland. This article is an open access article distributed under the terms and conditions of the Creative Commons Attribution (CC BY) license (https://creativecommons.org/licenses/by/4.0/).
Share and Cite
García-Grau, P.; Martínez-Rico, G.; González-García, R.J.; Escorcia-Mora, C.T.; Cañadas-Pérez, M. Caregiver Burden and Family Quality of Life in Early Intervention: The Role of Mothers and Family Confidence. Eur. J. Investig. Health Psychol. Educ. 2024, 14, 1325-1337. https://doi.org/10.3390/ejihpe14050087
García-Grau P, Martínez-Rico G, González-García RJ, Escorcia-Mora CT, Cañadas-Pérez M. Caregiver Burden and Family Quality of Life in Early Intervention: The Role of Mothers and Family Confidence. European Journal of Investigation in Health, Psychology and Education. 2024; 14(5):1325-1337. https://doi.org/10.3390/ejihpe14050087
Chicago/Turabian StyleGarcía-Grau, Pau, Gabriel Martínez-Rico, Rómulo J. González-García, Claudia Tatiana Escorcia-Mora, and Margarita Cañadas-Pérez. 2024. "Caregiver Burden and Family Quality of Life in Early Intervention: The Role of Mothers and Family Confidence" European Journal of Investigation in Health, Psychology and Education 14, no. 5: 1325-1337. https://doi.org/10.3390/ejihpe14050087
APA StyleGarcía-Grau, P., Martínez-Rico, G., González-García, R. J., Escorcia-Mora, C. T., & Cañadas-Pérez, M. (2024). Caregiver Burden and Family Quality of Life in Early Intervention: The Role of Mothers and Family Confidence. European Journal of Investigation in Health, Psychology and Education, 14(5), 1325-1337. https://doi.org/10.3390/ejihpe14050087