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Quality of life of parents of mentally-ill children: a systematic review and meta-analysis

Published online by Cambridge University Press:  06 August 2018

M. Dey Open the ORCID record for M. Dey [Opens in a new window] ,
R. Paz Castro ,
S. Haug  and
M. P. Schaub
M. Dey*
Affiliation:
Swiss Research Institute for Public Health and Addiction, University of Zurich, Zurich, Switzerland
R. Paz Castro
Affiliation:
Swiss Research Institute for Public Health and Addiction, University of Zurich, Zurich, Switzerland
S. Haug
Affiliation:
Swiss Research Institute for Public Health and Addiction, University of Zurich, Zurich, Switzerland
M. P. Schaub
Affiliation:
Swiss Research Institute for Public Health and Addiction, University of Zurich, Zurich, Switzerland
*
Author for correspondence: Michelle Dey, E-mail: [email protected]
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Abstract

Aims

To examine the quality of life (QOL) of parents of children with a specific mental disorder (any age).

Methods

Relevant articles were searched using different databases. Articles were included that compared the QOL of parents with mentally-ill children to parents of healthy controls or norm values or provided the required data for this comparison. A meta-analysis was conducted to obtain an overall mean effect size estimate. Additional analyses were performed to assess publication bias and moderation.

Results

Twenty-six out of 10 548 articles met the pre-defined inclusion criteria. Most of these studies focused on attention-deficit/hyperactivity disorder or autism spectrum disorder, used clinical samples that mainly included males and young children and studied the QOL of mothers. The meta-analysis revealed that parents of mentally-ill children are experiencing a clinically relevant reduction in their QOL relative to parents of healthy children and norm values (g = −0.66).

Conclusions

The compromised QOL of parents of mentally-ill children needs to be considered and addressed by health professionals who are in contact with them. The paper provides insights into existing research gaps and suggests improvements for subsequent work.

Keywords

Adolescenceattention deficit hyperactivity disorderautismsystematic reviews
Type
Original Articles
Information
Epidemiology and Psychiatric Sciences , Volume 28 , Issue 5 , October 2019 , pp. 563 - 577
Copyright
Copyright © Cambridge University Press 2018 

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References

Allik, H, Larsson, J-O and Smedje, H (2006) Health-related quality of life in parents of school-age children with Asperger syndrome or high-functioning autism. Health and Quality of Life Outcomes 4, 1.Google Scholar
American Psychological Association (2000) Diagnostic and Statistical Manual of Mental Disorders (4th Edition Text Revision), 4th Edn. Washington, DC: APA.Google Scholar
American Psychological Association (2013) Diagnostic and Statistical Manual of Mental Disorders, 5th Edn. Washington, DC: APA.Google Scholar
Anastasiadou, D, Sepulveda, AR, Sánchez, JC, Parks, M, Álvarez, T and Graell, M (2016) Family functioning and quality of life among families in eating disorders: a comparison with substance-related disorders and healthy controls. European Eating Disorders Review 24, 294–303.Google Scholar
Avrech Bar, M, Jlole Majadla, S and Bart, O (2015) Managing everyday occupations as a predictor of health and life satisfaction among mothers of children with ADHD. Journal of Attention Disorders 22, 1008–1016.Google Scholar
Baxter, AJ, Brugha, TS, Erskine, HE, Scheurer, RW, Vos, T and Scott, JG (2015) The epidemiology and global burden of autism spectrum disorders. Psychological Medicine 45, 601–613.Google Scholar
Benjak, T, Mavrinac, G V, Šimetin, IP and Kolarić, B (2011) A comparative study on self-perceived health and quality of life of parents of children with autism spectrum disorders and parents of non disabled children in Croatia. Developmental Medicine and Child Neurology 53, 131–144.Google Scholar
Borenstein, M, Hedges, LV, Higgins, JPT and Rothstein, HR (2009) Introduction to Meta-Analysis. Chichester, UK: Wiley, Ltd.Google Scholar
Chan, Sc (2011) Global perspective of burden of family caregivers for persons with schizophrenia. Archives of Psychiatric Nursing 25, 339–349.Google Scholar
Chan, J and Lai, K (2016) Psychological adjustment of siblings of children with autism spectrum disorder in Hong Kong. East Asian Archives of Psychiatry 26, 141–147.Google Scholar
Cohen, J (1988) Statistical Power Analysis for the Behavioral Sciences. Hillsdale, NJ.Google Scholar
Corcoran, J, Berry, A and Hill, S (2015) The lived experience of US parents of children with autism spectrum disorders: a systematic review and meta-synthesis. Journal of Intellectual Disabilities 19, 356–366.Google Scholar
Costello, EJ, Egger, H and Angold, A (2005) 10-year research update review: the epidemiology of child and adolescent psychiatric disorders: I. Methods and public health burden. Journal of the American Academy of Child and Adolescent Psychiatry 44, 972–986.Google Scholar
Da Paz, NS and Wallander, JL (2017) Interventions that target improvements in mental health for parents of children with autism spectrum disorders: a narrative review. Clinical Psychology Review 51, 1–14.Google Scholar
De Girolamo, G, Dagani, J, Purcell, R, Cocchi, A and McGorry, PD (2012) Age of onset of mental disorders and use of mental health services: needs, opportunities and obstacles. Epidemiology and Psychiatric Sciences 21, 47–57.Google Scholar
Del Re, AC (2010) Compute.es: Compute Effect Sizes. Madison, WI.Google Scholar
Del Re, AC and Flückiger, C (2016) Meta-Analysis. In APA Handbook of Clinical Psychology: Vol. 2. Theory and Research, pp. 479–491.Google Scholar
Del Re, AC and Hoyt, WT (2010) MAD: Meta-Analysis with Mean Differences. Madison, WI.Google Scholar
Eapen, V, Črnčec, R, Walter, A and Tay, KP (2014) Conceptualisation and development of a quality of life measure for parents of children with autism spectrum disorder. Autism Research and Treatment 2014, 1–11.Google Scholar
Egemen, A, Akil, I, Canda, E, Ozyurt, BC and Eser, E (2008) An evaluation of quality of life of mothers of children with enuresis nocturna. Pediatric Nephrology 23, 93–98.Google Scholar
Foldemo, A, Gullberg, M, Ek, AC and Bogren, L (2005) Quality of life and burden in parents of outpatients with schizophrenia. Social Psychiatry and Psychiatric Epidemiology 40, 133–138.Google Scholar
Ginieri-Coccossis, M, Rotsika, V, Skevington, S, Papaevangelou, S, Malliori, M, Tomaras, V and Kokkevi, A (2012) Quality of life in newly diagnosed children with specific learning disabilities (SpLD) and differences from typically developing children: a study of child and parent reports. Child: Care, Health and Development 39, 581–591.Google Scholar
Gore, FM, Bloem, PJN, Patton, GC, Ferguson, J, Joseph, V, Coffey, C, Sawyer, SM and Mathers, CD (2011) Global burden of disease in young people aged 10-24 years: a systematic analysis. The Lancet 377, 2093–2102.Google Scholar
Hadi, N, Saghebi, A, Ghanizadeh, A and Montazeri, A (2013) Assessment of health-related quality of life in mothers of children with attention-deficit hyperactivity disorder (ADHD), Shiraz, 2008-2009. Shiraz E Medical 14, 91–101.Google Scholar
Hoyt, WT and Del Re, AC (2015) Comparison of methods for aggregating dependent effect sizes in meta-analysis, Manuscript in preparation.Google Scholar
Jalenques, I, Auclair, C, Morand, D, Legrand, G, Marcheix, M, Ramanoel, C, Hartmann, A, The Syndrome de Gilles de la Tourette Study Group, Derost P (2017) Health-related quality of life, anxiety and depression in parents of adolescents with Gilles de la Tourette syndrome: a controlled study. European Child and Adolescent Psychiatry 26, 603–617.Google Scholar
Ji, B, Zhao, I, Turner, C, Sun, M, Yi, R and Tang, S (2014) Predictors of health-related quality of life in Chinese caregivers of children with autism spectrum disorders: a cross-sectional study. Archives of Psychiatric Nursing 28, 327–332.Google Scholar
Kandemir, H, Kiliç, BG, Ekinci, S and Yüce, M (2014) An evaluation of the quality of life of children with ADHD and their families. Anadolu Psikiyatri Dergisi 15, 265–271.Google Scholar
Kessler, RC, Amminger, GP, Aguilar-Gaxiola, S, Alonso, J, Lee, S and Ustün, TB (2007) Age of onset of mental disorders: a review of recent literature. Current Opinion in Psychiatry 20, 359–364.Google Scholar
Kilicoglu, AG, Mutlu, C, Bahali, MK, Adaletli, H, Gunes, H, Metin Duman, H, Toz, HI and Uneri, OS (2014) Impact of enuresis nocturna on health-related quality of life in children and their mothers. Journal of Pediatric Urology 10, 1261–1266.Google Scholar
Killian, JT, Lane, JB, Lee, HS, Pelham, JH, Skinner, SA, Kaufmann, WE, Glaze, DG, Neul, JL and Percy, AK (2016) Caretaker quality of life in Rett Syndrome: disorder features and psychological predictors. Pediatric Neurology 58, 67–74.Google Scholar
Klages, D, Usher, K and Jackson, D (2016) ‘Canaries in the mine’. Parents of adult children with schizophrenia: an integrative review of the literature. International Journal of Mental Health Nursing 26, 5–19.Google Scholar
Kuhlthau, K, Payakachat, N, Delahaye, J, Hurson, J, Pyne, JM, Kovacs, E and Tilford, JM (2014) Quality of life for parents of children with autism spectrum disorders. Research in Autism Spectrum Disorders 8, 1339–1350.Google Scholar
Lange, G, Sheerin, D, Carr, A, Dooley, B, Barton, V, Marshall, D, Mulligan, A, Lawlor, M, Belton, M and Doyle, M (2005) Family factors associated with attention deficit hyperactivity disorder and emotional disorders in children. Journal of Family Therapy 27, 76–96.Google Scholar
Lee, GK, Lopata, C, Volker, MA, Thomeer, ML, Nida, RE, Toomey, JA, Chow, SY and Smerbeck, AM (2009) Health-related quality of life of parents of children with high-functioning autism spectrum disorders. Focus on Autism and Other Developmental Disabilities 24, 227–239.Google Scholar
Lipsey, MW and Wilson, DB (2001) Practical Meta-Analysis. Thousand Oaks, CA: Sage Publications.Google Scholar
Logan, DE and King, Ca (2001) Parental facilitation of adolescent mental health services utilization: a conceptual and empirical review. Clinical Psychology: Science and Practice 8, 319–333.Google Scholar
Mugno, D, Ruta, L, D'Arrigo, VG and Mazzone, L (2007) Impairment of quality of life in parents of children and adolescents with pervasive developmental disorder. Health and Quality of Life Outcomes 5, 1–9.Google Scholar
Naitoh, Y, Kawauchi, A, Soh, J, Kamoi, K and Miki, T (2012) Health related quality of life for monosymptomatic enuretic children and their mothers. Journal of Urology 188, 1910–1914.Google Scholar
Niinomi, K, Asano, M, Kadoma, A, Yoshida, K, Ohashi, Y, Furuzawa, A, Yamamoto, M, Yamakita, N and Mori, A (2016) Developing the “Skippu-Mama” program for mothers of children with autism spectrum disorder. Nursing & Health Sciences 18, 283–291.Google Scholar
Norman, GR, Sloan, JA and Wyrwich, KW (2003) Interpretation of changes in health-related quality of life: the remarkable universality of half a standard deviation. Medical Care 41, 582–592.Google Scholar
Patel, V, Flisher, AJ, Hetrick, S and McGorry, P (2007) Mental health of young people: a global public-health challenge. Lancet 369, 1302–1313.Google Scholar
R Core Team (2013) R: a Language and Environment for Statistical Computing. 2013. Vienna, Austria: R Foundation for Statistical Computing.Google Scholar
Sayal, K (2006) Annotation: pathways to care for children with mental health problems. Journal of Child Psychology and Psychiatry and Allied Disciplines 47, 649–659.Google Scholar
Schreyer, I and Hampel, P (2009) ADHS bei Jungen im Kindesalter - Lebensqualität und Erziehungsverhalten. Zeitschrift fur Kinder- und Jugendpsychiatrie und Psychotherapie 37, 69–75.Google Scholar
Steele, L, Dewa, C and Lee, K (2007) Socioeconomic status and self-reported barriers to mental health service use. Canadian Journal of Psychiatry. Revue canadienne de psychiatrie 52, 201–206.Google Scholar
Sterne, J, Egger, M and Smith, G (2001) Investigating and dealing with publication and other biases in meta-analysis. BMJ 323, 101–105.Google Scholar
Suzumura, S (2015) Quality of life in mothers of preschoolers with high-functioning pervasive developmental disorders. Pediatrics International 57, 149–154.Google Scholar
Thapar, A and Cooper, M (2016) Attention deficit hyperactivity disorder. The Lancet 387, 1240–1250.Google Scholar
Theule, J, Wiener, J, Tannock, R and Jenkins, JMJ (2010) Parenting stress in families of children with ADHD: a meta-analysis. Journal of Emotional and Behavioral Disorders 21, 3–17.Google Scholar
van der Voort, TY, Goossens, PJ and van der Bijl, JJ (2007) Burden, coping and needs for support of caregivers for patients with a bipolar disorder: a systematic review. Journal of Psychiatric and Mental Health Nursing 14, 679–687.Google Scholar
Vasilopoulou, E and 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.Google Scholar
Viechtbauer, W (2010) Conducting meta-analyses in R with the metafor package. Journal of Statistical Software 36, 1–48.Google Scholar
WHOQOL Group (1995) The World Health Organization Quality of Life assessment (WHOQOL): position paper from the World Health Organization. Social Science & Medicine 41, 1403–1409.Google Scholar
World Health Organization (1992) The ICD-10 classification of mental and behavioural disorders. International Classification 10, 1–267.Google Scholar
Xiang, Y-T, Luk, ESL and Lai, KYC (2009) Quality of life in parents of children with attention-deficit-hyperactivity disorder in Hong Kong. The Australian and New Zealand Journal of Psychiatry 43, 731–738.Google Scholar
Yamada, A, Kato, M, Suzuki, M, Suzuki, M, Watanabe, N, Akechi, T, Furukawa, TA, Wingate, M, Mulvihill, B, Kirby, R, Pettygrove, S, Cunniff, C, Meaney, F, Schulz, E, Miller, L, Robinson, C, Quintana, G, Konstantareas, M, Homatidis, S, Konstantareas, MM, Homatidis, S, Moes, D, Koegel, RL, Schreibman, L, Loos, LM, Dumas, J, Wolf, LC, Fisman, SN, Culligan, A, Freeman, NL, Perry, A, Factor, DC, Holroyd, J, Wolf, LC, Noh, S, Fisman, SN, Speechley, M, Hastings, RP, Hastings, RP, Kovshoff, H, Ward, NJ, Espinosa, FD, Brown, T, Remington, B, Bristol, MM, Gallagher, JJ, Schopler, E, Olsson, MB, Hwang, CP, Gray, DE, Yamada, A, Suzuki, M, Kato, M, Suzuki, M, Tanaka, S, Shindo, T, Taketani, K, Akechi, T, Furukawa, TA, Mugno, D, Ruta, L, D'Arrigo, VG, Mazzone, L, Allik, H, Larsson, JO, Smedje, H, Benjak, T, Mavrinac, GV, Simetin, IP, Koegel, RL, Schreibman, L, Loos, LM, Dirlich-Wilhelm, H, Dunlap, G, Robbins, FR, Plienis, AJ, Doo, S, Wing, YK, Montes, G, Halterman, JS, Weiss, SJ, Siman-Tov, A, Kaniel, S, Dunn, ME, Burbine, T, Bowers, CA, Tantleff-Dunn, S, Gill, MJ, Harris, SL, Factor, DC, Perry, A, Freeman, N, Pakenham, KI, Samios, C, Sofronoff, K, Ekas, NV, Lickenbrock, DM, Whitman, TL, Weiss, MJ, Cappe, E, Wolff, M, Bobet, R (2012) Quality of life of parents raising children with pervasive developmental disorders. BMC Psychiatry 12, 119.Google Scholar
Zabala, MJ, Macdonald, P and Treasure, J (2009) Appraisal of caregiving burden, expressed emotion and psychological distress in families of people with eating disorders: a systematic review. European Eating Disorders Review 17, 338–349.Google Scholar
Zare, R, Jafari, P and Ghanizadeh, A (2017) Do Adult Attention Deficit Hyperactivity Disorder Quality-Of-Life (AAQoL) scale and the SF-36 scale measure the same construct of health-related quality of life? ADHD Attention Deficit and Hyperactivity Disorders 9, 39–45.Google Scholar