Top

Journal of Psychopathology and Behavioral Assessment

Gepubliceerd in:

16-08-2023

The Impact of Caregiving for Children with Special Healthcare Needs on Negative Affect, Quality of Life, and Trait Mindfulness

Auteurs: Mandy D. Bamber, Farnaz Solatikia, Philippe Gaillard, Regena Spratling

Gepubliceerd in: Journal of Psychopathology and Behavioral Assessment | Uitgave 4/2023

Abstract

Informal caregivers of children with special healthcare needs (SHCN) are at risk for negative affect and poor quality of life (QOL). Inherent, or trait, mindfulness is thought to attenuate stress, depression, and anxiety (negative affect) and improve QOL. We aimed to investigate differences between caregiver groups (caregivers of children with and without SHCN), while exploring the effects of trait mindfulness on the relationship between caregiver group, QOL, and negative affect. A cross-sectional design was used with 120 informal caregivers of children with and without SHCN. Analysis included independent samples t-tests for between group differences and PROCESS Macro (Model 4) with 5000 bootstrapping was used to test the indirect effect of trait mindfulness on negative affect and QOL. Informal caregivers of children with SHCN had poorer negative affect, QOL, and lower levels of trait mindfulness than those caring for typically developing, healthy children. Trait mindfulness was found to significantly affect the relationship between caregiver group and QOL and partially accounted for the relation between caregiver group and negative affect individually in simple mediation models. Trait mindfulness may explain why some caregivers have higher levels of negative affect and worse QOL than others. Future research should explore the effects of severity of the child’s illness and caregiver gender on affect and QOL. Moreover, mindfulness in combination with other protective factors such as social support should be explored to gain a more complete understanding of how we can protect the wellbeing of those caring for vulnerable children.

vorige artikel Positive Affect Dampening Prospectively Predicts Changes in Chronic Life Stress, but Not Episodic Stress Generation Among Adolescents

volgende artikel What Are They Measuring? Testing the Convergent Validity of State and Trait Mindfulness Measures Across Two Independent Samples

Alleen toegankelijk voor geautoriseerde gebruikers

Anclair, M., Hjärthag, F., & Hiltunen, A. J. (2017). Cognitive behavioural therapy and mindfulness for Health-Related Quality of Life: Comparing treatments for parents of children with chronic conditions—A pilot feasibility study. Clinical Practice and Epidemiology in Mental Health, 13, https://doi.org/10.2174/1745017901713010001

Anclair, M., Lappalainen, R., Muotka, J., & Hiltunen, A. J. (2018). Cognitive behavioural therapy and mindfulness for stress and burnout: A waiting list controlled pilot study comparing treatments for parents of children with chronic conditions. Scandinavian Journal of Caring Sciences, 32(1), 389–396. https://dx.doi.org.proxy.lib.fsu.edu/10.1111/scs.12473CrossRefPubMed

Antony, M. M., Bieling, P. J., Cox, B. J., Enns, M. W., & Swinson, R. P. (1998). Psychometric properties of the 42-item and 21-item versions of the Depression anxiety stress Scales in clinical groups and a community sample. Psychological assessment, 10(2), 176.CrossRef

Bamber, M. D., & Kraenzle Schneider, J. (2016). Mindfulness-based meditation to decrease stress and anxiety in college students: A narrative synthesis of the research. Educational Research Review, 18, 1–32. https://doi.org/10.1016/j.edurev.2015.12.004CrossRef

Bird, A. L., Russell, S., Pickard, J. A., Donovan, M., Madsen, M., & Herbert, J. S. (2021). Parents’ dispositional mindfulness, child conflict discussion, and childhood internalizing difficulties: A preliminary study. Mindfulness, 12(7), 1624–1638. https://doi.org/10.1007/s12671-021-01625-5

Boettcher, J., Denecke, J., Barkmann, C., & Wiegand-Grefe, S. (2020). Quality of life and Mental Health in mothers and fathers caring for children and adolescents with rare Diseases requiring long-term mechanical ventilation. International Journal of Environmental Research and Public Health, 17(23), 8975. https://doi.org/10.3390/ijerph17238975CrossRefPubMedPubMedCentral

Brehaut, J. C., Kohen, D. E., Garner, R. E., Miller, A. R., Lach, L. M., Klassen, A. F., & Rosenbaum, P. L. (2009). Health among caregivers of children with health problems: Findings from a canadian population-based study. American journal of public health, 99(7), 1254–1262. https://doi.org/10.2105/AJPH.2007.129817CrossRefPubMedPubMedCentral

Brown, K. W., & Cordon, S. (2009). Toward a Phenomenology of Mindfulness: Subjective Experience and Emotional Correlates. In F. Didonna (Ed.), Clinical Handbook of Mindfulness (pp. 59–81). Springer New York. https://doi.org/10.1007/978-0-387-09593-6_5

Brown, R. I., MacAdam–Crisp, J., Wang, M., & Iarocci, G. (2006). Family Quality of Life when there is a child with a developmental disability. Journal of Policy and Practice in Intellectual Disabilities, 3(4), 238–245. https://doi.org/10.1111/j.1741-1130.2006.00085.xCrossRef

Burckhardt, C. S., & Anderson, K. L. (2003). The quality of Life Scale (QOLS): Reliability, validity, and utilization. Health And Quality Of Life Outcomes, 1, 60. https://doi.org/10.1186/1477-7525-1-60CrossRefPubMedPubMedCentral

Burckhardt, C. S., Woods, S. L., Schultz, A. A., & Ziebarth, D. M. (1989). Quality of life of adults with chronic illness: A psychometric study. Research in Nursing & Health, 12(6), 347–354. https://doi.org/10.1002/nur.4770120604

Caicedo, C. (2014). Families with special needs children: Family health, functioning, and care burden. Journal Of The American Psychiatric Nurses Association, 20(6), 398–407. https://doi.org/10.1177/1078390314561326CrossRefPubMed

Chan, K. K. S., & Lam, C. B. (2017). Trait Mindfulness attenuates the adverse psychological impact of Stigma on parents of children with Autism Spectrum Disorder. Mindfulness, 8(4), 984–994. https://doi.org/10.1007/s12671-016-0675-9CrossRef

Chari, A. V., Engberg, J., Ray, K. N., & Mehrotra, A. (2015). The opportunity costs of informal elder-care in the United States: New estimates from the American Time Use Survey. Health Services Research, 50(3), 871–882. https://doi.org/10.1111/1475-6773.12238CrossRefPubMed

Cochrane, J. J., Goering, P. N., & Rogers, J. M. (1997). The mental health of informal caregivers in Ontario: An epidemiological survey. American Journal Of Public Health, 87(12), 2002–2007. https://doi.org/10.2105/ajph.87.12.2002CrossRefPubMedPubMedCentral

Conner, C. M., & White, S. W. (2014). Stress in mothers of children with autism: Trait mindfulness as a protective factor. In (Vol. 8, pp. 617–624).

Dardas, L. A., & Ahmad, M. M. (2015). Coping strategies as mediators and moderators between stress and quality of life among parents of children with Autistic Disorder. Stress and Health, 31(1), 5–12. https://doi.org/10.1002/smi.2513CrossRefPubMed

Data and Resource Center for Child and Adolescent Health. (2018). The Child and Adolescent Health Measurement Initiative.

Data Resource Center for Child and Adolescent Health. The CAHMI, & Child (2021). & Adolescent Health Measurement Initiative. Retrieved 08/01/2022 from https://www.childhealthdata.org/learn-about-the-nsch/NSCH

Deeken, J. F., Taylor, K. L., Mangan, P., Yabroff, K. R., & Ingham, J. M. (2003). Care for the caregivers: A review of self-report instruments developed to measure the burden, needs, and quality of life of informal caregivers. In (Vol. 26, pp. 922–953).

Deloitte Access, E. (2020). The value of informal care in 2020. https://doi.org/https://doi.org/APO-307225

Dykens, E. M., Fisher, M. H., Taylor, J. L., Lambert, W., & Miodrag, N. (2014). Reducing distress in mothers of children with autism and other disabilities: a randomized trial. Pediatrics, peds. 2013–3164.

Everhart, R. S., Miadich, S. A., Leibach, G. G., Borschuk, A. P., & Koinis-Mitchell, D. (2016). Acculturation and quality of life in urban, african american caregivers of children with asthma. Journal of Asthma, 53(9), 983–988.CrossRef

Fairfax, A., Brehaut, J., Colman, I., Sikora, L., Kazakova, A., Chakraborty, P., & Potter, B. K. (2019). A systematic review of the association between coping strategies and quality of life among caregivers of children with chronic illness and/or disability. BMC Pediatrics, 19(1), 1–16. https://doi.org/10.1186/s12887-019-1587-3CrossRef

Falzarano, F., & Siedlecki, K. L. (2021). Differences in cognitive performance between informal caregivers and non-caregivers. Neuropsychology, Development, And Cognition. Section B, Aging, Neuropsychology And Cognition, 28(2), 284–307. https://doi.org/10.1080/13825585.2020.1749228CrossRefPubMed

Flanagan J. C. (1982). Measurement of quality of life: Current state of the art. Archives of Physical Medicine and Rehabilitation, 63(2), 56–59.

Fuente, J., Mañas, I., Franco, C., Cangas, A. J., & Soriano, E. (2018). Differential Effect of Level of Self-Regulation and Mindfulness Training on coping strategies used by University students. International journal of environmental research and public health, 15(10), 2230. https://doi.org/10.3390/ijerph15102230CrossRefPubMedPubMedCentral

Gerdes, A. C., Hoza, B., Arnold, L. E., Pelham, W. E., Swanson, J. M., Wigal, T., & Jensen, P. S. (2007). Maternal depressive symptomatology and parenting behavior: Exploration of possible mediators. Journal of Abnormal Child Psychology, 35(5), 705–714. https://doi.org/10.1007/s10802-007-9134-3CrossRefPubMed

Ghorbani, N., Cunningham, C. J. L., & Watson, P. J. (2010). Comparative analysis of integrative self-knowledge, mindfulness, and private self-consciousness in predicting responses to stress in Iran. International Journal of Psychology, 45(2), 147–154. https://doi.org/10.1080/00207590903473768

Gloster, A. T., Rhoades, H. M., Novy, D., Klotsche, J., Senior, A., Kunik, M., & Stanley, M. A. (2008). Psychometric properties of the Depression anxiety and stress Scale-21 in older primary care patients. Journal Of Affective Disorders, 110(3), 248–259. https://doi.org/10.1016/j.jad.2008.01.023CrossRefPubMedPubMedCentral

Goudie, A., Narcisse, M. R., Hall, D. E., & Kuo, D. Z. (2014). Financial and psychological stressors associated with caring for children with disability. Families, Systems & Health : The Journal Of Collaborative Family Healthcare, 32(3), 280–290. https://doi.org/10.1037/fsh0000027CrossRef

Gu, J., Strauss, C., Crane, C., Barnhofer, T., Karl, A., Cavanagh, K., & Kuyken, W. (2016). Examining the factor structure of the 39-item and 15-item versions of the Five Facet Mindfulness Questionnaire before and after mindfulness-based cognitive therapy for people with recurrent depression [https://doi.org/10.1037/pas0000263]

Gupta, V. B. (2007). Comparison of parenting stress in different developmental disabilities. Journal of Developmental and Physical Disabilities, 19(4), 417–425.CrossRef

Hayes, A. F. (2012). PROCESS: A versatile computational tool for observed variable mediation, mod eration, and conditional process modeling [White paper]. Retrieved from http://www.afhayes.com/public/process2012.pdf

Herman, S. E., & Marcenko, M. O. (1997). Perceptions of services and resources as mediators of Depression among parents of children with Developmental Disabilities. Mental Retardation, 35(6), 458.CrossRefPubMed

Hoyle, J. N., Laditka, J. N., & Laditka, S. B. (2021). Mental health risks of parents of children with developmental disabilities: A nationally representative study in the United States. Disability and Health Journal, 14(2), 101020. https://doi.org/10.1016/j.dhjo.2020.101020CrossRefPubMed

Hsiao, Y. J. (2016). Pathways to mental health-related quality of life for parents of children with autism spectrum disorder: Roles of parental stress, children’s performance, medical support, and neighbor support. Research in Autism Spectrum Disorders, 23, 122–130. https://doi.org/10.1016/j.rasd.2015.10.008CrossRef

Jaser, S. S., Whittemore, R., Ambrosino, J. M., Lindemann, E., & Grey, M. (2008). Mediators of depressive symptoms in children with type 1 diabetes and their mothers. Journal of Pediatric Psychology, 33(5), 509–519. https://doi.org/10.1093/jpepsy/jsm104CrossRefPubMed

Jones, D. R., Lehman, B. J., Noriega, A., & Dinnel, D. L. (2019). The effects of a short-term mindfulness meditation intervention on coping flexibility. Anxiety stress and coping, 32(4), 347–361. https://doi.org/10.1080/10615806.2019.1596672CrossRefPubMed

Jones, L., Gold, E., Totsika, V., Hastings, R. P., Jones, M., Griffiths, A., & Silverton, S. (2018). A mindfulness parent well-being course: Evaluation of outcomes for parents of children with autism and related disabilities recruited through special schools. European Journal of Special Needs Education, 33(1), 16–30. https://doi.org/10.1080/08856257.2017.1297571CrossRef

Jones, L., Hastings, R. P., Totsika, V., Keane, L., & Rhule, N. (2014). Child behavior problems and parental well-being in families of children with autism: The Mediating Role of Mindfulness and Acceptance. American Journal on Intellectual and Developmental Disabilities, 119(2), 171–185. https://doi.org/10.1352/1944-7558-119.2.171CrossRefPubMed

Kabat-Zinn, J. Mindfulness-Based Interventions in Context: Past, Present, and, Future, & (2003). Clinical Psychology: Science and Practice, 10(2), 144–156. https://doi.org/10.1093/clipsy.bpg016

Kögler, M., Brandstätter, M., Borasio, G. D., Fensterer, V., Küchenhoff, H., & Fegg, M. J. (2015). Mindfulness in informal caregivers of palliative patients. Palliative and Supportive Care, 13(1), 11–18. https://doi.org/10.1017/S1478951513000400CrossRefPubMed

Kiken, L. G., Garland, E. L., Bluth, K., Palsson, O. S., & Gaylord, S. A. (2015). From a state to a trait: Trajectories of state mindfulness in meditation during intervention predict changes in trait mindfulness. Personality and Individual Differences, 81, 41–46. https://doi.org/10.1016/j.paid.2014.12.044

Leung, S., & Lee, A. (2014). Negative affect. In A. C. Michalos (Ed.), Encyclopedia of Quality of Life and Well-Being Research. Springer. https://doi.org/10.1007/978-94-007-0753-5_1923

Liu, Z., Chen, Q., & Sun, Y. (2017). M indfulness training for psychological stress in family caregivers of persons with dementia: A systematic review and meta-analysis of randomized controlled trials. Clinical Interventions in Aging, 2017(12), 1521–1529. https://doi.org/10.2147/CIA.S146213CrossRef

Lu, M. H., Wang, G. H., Lei, H., Shi, M. L., Zhu, R., & Jiang, F. (2018). Social Support as Mediator and Moderator of the relationship between parenting stress and life satisfaction among the chinese parents of children with ASD. Journal of Autism and Developmental Disorders, 48(4), 1181–1188. https://doi.org/10.1007/s10803-017-3448-yCrossRefPubMed

MacDonald, E. E., & Hastings, R. P. (2010). Mindful parenting and care involvement of fathers of children with intellectual disabilities. Journal of Child and Family Studies, 19(2), 236–240.CrossRef

Mallya, S., & Fiocco, A. J. (2018). Impact of informal caregiving on cognitive function and well-being in Canada. International Psychogeriatrics, 30(7), 1049–1055. https://doi.org/10.1017/S1041610217002605CrossRefPubMed

Masuda, A., & Tully, E. C. (2011). The role of mindfulness and psychological flexibility in somatization, Depression, anxiety, and General Psychological Distress in a Nonclinical College Sample. Journal of Evidence-Based Complementary & Alternative Medicine, 17(1), 66–71. https://doi.org/10.1177/2156587211423400CrossRef

McPherson, M., Arango, P., Fox, H., Lauver, C., McManus, M., Newacheck, P. W., & Strickland, B. (1998). A new definition of children with special health care needs. Pediatrics, 102(1 Pt 1), 137–140. https://doi.org/10.1542/peds.102.1.137CrossRefPubMed

Murphy, N. A., Christian, B., Caplin, D. A., & Young, P. C. (2007). The health of caregivers for children with disabilities: Caregiver perspectives. Child: Care Health and Development, 33(2), 180–187. https://doi.org/10.1111/j.1365-2214.2006.00644.xCrossRefPubMed

Osborn, R., Dorstyn, D., Roberts, L., & Kneebone, I. (2021). Mindfulness therapies for improving mental health in parents of children with a developmental disability: A systematic review. Journal of Developmental and Physical Disabilities, 33(3), 373–389. https://doi.org/10.1007/s10882-020-09753-x

Pilapil, M., Coletti, D. J., Rabey, C., & DeLaet, D. (2017). Caring for the Caregiver: Supporting families of Youth with Special Health Care needs. Current Problems in Pediatric and Adolescent Health Care, 47(8), 190–199. https://doi.org/10.1016/j.cppeds.2017.07.003CrossRefPubMed

Pop, R. S., Puia, A., & Mosoiu, D. (2022). Factors influencing the quality of life of the primary caregiver of a Palliative patient: Narrative Review. Journal of Palliative Medicine, 25(5), 813–829. https://doi.org/10.1089/jpm.2021.0322CrossRefPubMed

Rayan, A., & Ahmad, M. (2016). Effectiveness of mindfulness-based interventions on quality of life and positive reappraisal coping among parents of children with autism spectrum disorder. In (Vol. 55, pp. 185–196).

Romley, J. A., Shah, A. K., Chung, P. J., Elliott, M. N., Vestal, K. D., & Schuster, M. A. (2017). Family-provided Health Care for Children with Special Health Care needs. Pediatrics, 139(1), e20161287. https://doi.org/10.1542/peds.2016-1287CrossRefPubMed

Sairanen, E., Lappalainen, P., & Hiltunen, A. (2018). Psychological inflexibility explains distress in parents whose children have chronic conditions. PLOS ONE, 13(7), e0201155. https://doi.org/10.1371/journal.pone.0201155CrossRefPubMedPubMedCentral

Schiller, V. F., Dorstyn, D. S., & Taylor, A. M. (2021). The protective role of social support sources and types against depression in caregivers: A meta-analysis. Journal of Autism and Developmental Disorders, 51, 1304–1315. https://doi.org/10.1007/s10803-020-04601-5CrossRefPubMed

Schulz, R., & Tompkins, C. A. (2010). Informal Caregivers in the United States: Prevalence, Characteristics, and Ability to Provide Care. Human Factors in Home Health Care. Washington, DC: National Academies of Sciences Press.

Shaffer, E. J., Lape, J. E., & Salls, J. (2020). Decreasing stress for parents of special needs children through a web-based mindfulness program: A pilot study. The Internet Journal of Allied Health Sciences and Practice, 18(4), Article 16.

Shapiro, S. L., Carlson, L. E., Astin, J. A., & Freedman, B. (2006). Mechanisms of mindfulness. Journal Of Clinical Psychology, 62(3), 373–386. https://doi.org/10.1002/jclp.20237CrossRefPubMed

Sharma, N., Chakrabarti, S., & Grover, S. (2016). Gender differences in caregiving among family - caregivers of people with mental illnesses. World J Psychiatry, 6(1), 7–17. https://doi.org/10.5498/wjp.v6.i1.7CrossRefPubMedPubMedCentral

Shepherd, D., Landon, J., Goedeke, S., & Meads, J. (2021). Stress and distress in New Zealand parents caring for a child with autism spectrum disorder. Research in Developmental Disabilities, 111, 103875. https://doi.org/10.1016/j.ridd.2021.103875CrossRefPubMed

Stillman, C. M., Feldman, H., Wambach, C. G., Howard, J. H., & Howard, D. V. (2014). Dispositional mindfulness is associated with reduced implicit learning. Consciousness and Cognition, 28, 141–150. https://doi.org/10.1016/j.concog.2014.07.002CrossRefPubMedPubMedCentral

Swinkels, J., Tilburg, T., Verbakel, E., & van Broese, M. (2019). Explaining the gender gap in the Caregiving Burden of Partner Caregivers. The Journals of Gerontology: Series B, 74(2), 309–317. https://doi.org/10.1093/geronb/gbx036CrossRef

Tomlinson, E. R., Yousaf, O., Vittersø, A. D., & Jones, L. (2018). Dispositional mindfulness and Psychological Health: A systematic review. Mindfulness, 9(1), 23–43. https://doi.org/10.1007/s12671-017-0762-6CrossRefPubMed

Treadway, M. T., & Lazar, S. W. (2009). The Neurobiology of Mindfulness. In F. Didonna (Ed.), Clinical Handbook of Mindfulness (pp. 45–57). Springer New York. https://doi.org/10.1007/978-0-387-09593-6_4

Vasilopoulou, E., & Nisbet, J. (2016). The quality of life of parents of children with autism spectrum disorder: A systematic review. Research in Autism Spectrum Disorders, 23, 36–49. https://doi.org/10.1016/j.rasd.2015.11.008CrossRef

Vitaliano, P. P., Ustundag, O., & Borson, S. (2017). Objective and subjective cognitive problems among caregivers and matched non-caregivers. The Gerontologist, 57(4), 637–647. https://doi.org/10.1093/geront/gnv690CrossRefPubMed

Watson, D., Clark, L. A., & Tellegen, A. (1988). Development and validation of brief measures of positive and negative affect: The PANAS scales. Journal of personality and social psychology, 54(6), 1063.CrossRefPubMed

Weinstein, N., Brown, K. W., & Ryan, R. M. (2009). A multi-method examination of the effects of mindfulness on stress attribution, coping, and emotional well-being. Journal of Research in Personality, 43(3), 374–385. https://doi.org/10.1016/j.jrp.2008.12.008CrossRef

Weiss, J. A., & Lunsky, Y. (2011). The brief family distress scale: A measure of crisis in caregivers of individuals with autism spectrum disorders. Journal of Child and Family Studies, 20(4), 521–528. https://doi.org/10.1007/s10826-010-9419-yCrossRef

Wheeler, A. C., Miller, S., Wylie, A., & Edwards, A. (2018). Mindfulness and Acceptance as potential protective factors for mothers of children with Fragile X syndrome [10.3389/fpubh.2018.00316]. Frontiers in Public Health, 6, 316.CrossRefPubMedPubMedCentral

Yaribeygi, H., Panahi, Y., Sahraei, H., Johnston, T. P., & Sahebkar, A. (2017). The impact of stress on body function: A review. EXCLI journal, 16, 1057–1072. https://doi.org/10.17179/excli2017-480CrossRefPubMedPubMedCentral

Titel: The Impact of Caregiving for Children with Special Healthcare Needs on Negative Affect, Quality of Life, and Trait Mindfulness
Auteurs: Mandy D. Bamber
Farnaz Solatikia
Philippe Gaillard
Regena Spratling
Publicatiedatum: 16-08-2023
Uitgeverij: Springer US
Gepubliceerd in: Journal of Psychopathology and Behavioral Assessment / Uitgave 4/2023
Print ISSN: 0882-2689
Elektronisch ISSN: 1573-3505
DOI: https://doi.org/10.1007/s10862-023-10081-5

Bohn Stafleu van Loghum

Deel dit onderdeel of sectie (kopieer de link)

Abstract

Log in om toegang te krijgen

Andere artikelen Uitgave 4/2023

The Substance Use Risk Profile Scale in Adulthood: An Exploratory Structural Equation Modelling Approach

Ready or Not: Predictors of Mother and Father Readiness for Change in a Clinical Sample

Investigating Relations Between the Symptoms of Panic, Agoraphobia, and Suicidal Ideation: The Significance of Comorbid Depressive Symptoms in Veterans with Panic Disorder

What Are They Measuring? Testing the Convergent Validity of State and Trait Mindfulness Measures Across Two Independent Samples

Adaptation and Validation of a French Version of the Griffith Empathy Measure

Short-Term Longitudinal Relations of S-1 Bifactor Externalizing Factors in a Majority-Minority Early Childhood Sample: An Examination of Developmental Theories and Demographic Characteristics