ADHD is characterised by a persistent and impairing pattern of inattention and/or hyperactivity/impulsivity that causes significant impairment to daily life. This study explores quality of life domains in adult ADHD using grounded theory driven data collection and analysis. Three semi-structured interviews with adults with ADHD with remission of symptoms were conducted. The experience of living with ADHD was reflected in seven themes: lack of a supportive network, labelling and attitudes from others, barriers placed on interpersonal relationships, psychological responses to ADHD, loss of opportunity to fulfil educational and occupational roles, therapeutic interventions, and attitudes to medication. This narrative generates conceptual knowledge of experiences of living with ADHD in adulthood that have not previously been considered. Developing understanding of the intricacies of peoples’ experiences of living with ADHD is clinically important as these specifics can help shape the variety of multidisciplinary support options.
References
[1]
Abbott, J., Dodd, M., & Webb, A. K. (1995). Different Perceptions of Disease Severity and Self Care between Patients with Cystic Fibrosis, Their Close Companions, and Physician. Thorax, 50, 794-796. https://doi.org/10.1136/thx.50.7.794
[2]
Agarwal, R., Goldenberg, M., Perry, R., & IsHak, W. W. (2012). The Quality of Life of Adults with Attention Deficit Hyperactivity Disorder: A Systematic Review. Innovations in Clinical Neuroscience, 9, 10-21. https://pubmed.ncbi.nlm.nih.gov/22808445/
[3]
Ahnemark, E., Di Schiena, M., Fredman, A. C., Medin, E., Söderling, J. K., & Ginsberg, Y. (2018). Health-Related Quality of Life and Burden of Illness in Adults with Newly Diagnosed Attention-Deficit/Hyperactivity Disorder in Sweden. BMC Psychiatry, 18, Article No. 223. https://doi.org/10.1186/s12888-018-1803-y
[4]
American Psychiatric Association (2013). Diagnostic and Statistical Manual of Mental Disorders (5th ed.). Arlington, VA: APA. https://doi.org/10.1176/appi.books.9780890425596
[5]
Andersen, R. M., Davidson, P. L., & Ganz, P. A. (1994). Symbiotic Relationships of Quality of Life, Health Services Research and Other Health Research. Quality of Life Research, 3, 365-371. https://doi.org/10.1007/BF00451728
[6]
Angermeyer, M. C., Holzinger, A., Kilian, R., & Matschinger, H. (2001). Quality of Life—As Defined by Schizophrenic Patients and Psychiatrists. The International Journal of Social Psychiatry, 47, 34-42. https://doi.org/10.1177/002076400104700203
[7]
Asherson, P., Buitelaar, J., Faraone, S. V., & Rohde, L. A. (2016). Adult Attention-Deficit Hyperactivity Disorder: Key Conceptual Issues. Lancet Psychiatry, 3, 568-578. https://doi.org/10.1016/S2215-0366(16)30032-3
[8]
Baker, B. L., Heller, T. L., & Henker, B. (2000). Expressed Emotion, Parenting Stress, and Adjustment in Mothers of Young Children with Behavior Problems. Journal of Child Psychology and Psychiatry, 41, 907-915. https://doi.org/10.1111/1469-7610.00678
[9]
Barkley, R. A., & Cunningham, C. E. (1979). The Effects of Methylphenidate on the Mother-Child Interactions of Hyperactive Children. Archives of General Psychiatry, 36, 201-208. https://doi.org/10.1001/archpsyc.1979.01780020091010
[10]
Barkley, R. A., Karlsson, J., Pollard, S., & Murphy, J. V. (1985). Developmental Changes in the Mother-Child Interactions of Hyperactive Boys: Effects of Two Dose Levels of Ritalin. Journal of Child Psychology and Psychiatry, 26, 705-715. https://doi.org/10.1111/j.1469-7610.1985.tb00585.x
[11]
Breslin, S. (1991). Quality of Life: How Is It Measured and Defined? Urologia Internationalis, 46, 246-251. https://doi.org/10.1159/000282146
[12]
Brod, M., Johnston, J., Able, S., & Swindle, R. (2006). Validation of the Adult Attention-Deficit/Hyperactivity Disorder Quality-of-Life Scale (AAQoL): A Disease-Specific Quality-of-Life Measure. Quality of Life Research, 15, 117-129. https://www.jstor.org/stable/27641069 https://doi.org/10.1007/s11136-005-8325-z
[13]
Brod, M., Pohlman, B., Lasser, R., & Hodgkins, P. (2012). Comparison of the Burden of Illness for Adults with ADHD across Seven Countries: A Qualitative Study. Health and Quality of Life Outcomes, 10, Article No. 47. https://doi.org/10.1186/1477-7525-10-47
[14]
Brod, M., Schmitt, E., Goodwin, M., Hodgkins, P., & Niebler, G. (2012). ADHD Burden of Illness in Older Adults: A Life Course Perspective. Quality of Life Research, 21, 795-799. https://doi.org/10.1007/s11136-011-9981-9
[15]
Brown, G. W., Birley, J. L., & Wing, J. K. (1972). Influence of Family Life on the Course of Schizophrenic Disorders: A Replication. The British Journal of Psychiatry, 121, 241-258. https://doi.org/10.1192/bjp.121.3.241
[16]
Brown, G. W., Monck, E. M., Carstairs, G. M., & Wing, J. K. (1962). Influence of Family Life on the Course of Schizophrenic Illness. British Journal of Preventive & Social Medicine, 16, 55-68. https://www.ncbi.nlm.nih.gov/pmc/articles/PMC1058855/ https://doi.org/10.1136/jech.16.2.55
[17]
Buitelaar, J. K., Wilens, T. E., Zhang, S., Ning, Y., & Feldman, P. D. (2009). Comparison of Symptomatic versus Functional Changes in Children and Adolescents with ADHD during Randomized, Double-Blind Treatment with Psychostimulants, Atomoxetine, or Placebo. Journal of Child Psychology and Psychiatry, 50, 335-342. https://doi.org/10.1111/j.1469-7610.2008.01960.x
[18]
Conners, C. K., Erhardt, D., & Sparrow, E. (1999). Conners’ Adult ADHD Rating Scales (CAARS) Technical Manual. North Tonawanda, NY: Multi-Health Systems, Inc.
[19]
da Silva, M. A., Chaim, T. M., Cavalett, M., Serpa, M. H., Zanetti, M. V., Vieira, G. F. et al. (2014). Health-Related Quality of Life in Adults with Attention-Deficit and Hyperactivity Disorder. Medical Express, 1, 43-46. https://doi.org/10.5935/MedicalExpress.2014.01.10
[20]
Daley, D., Sonuga-Barke, E. J., & Thompson, M. (2003). Assessing Expressed Emotion in Mothers of Preschool AD/HD Children: Psychometric Properties of a Modified Speech Sample. British Journal of Clinical Psychology, 42, 53-67.
[21]
Danckaerts, M., Sonuga-Barke, E. J., Banaschewski, T., Buitelaar, J., Döpfner, M., Hollis, C. et al. (2010). The Quality of Life of Children with Attention Deficit/Hyperactivity Disorder: A Systematic Review. European Child and Adolescent Psychiatry, 19, 83-105. https://doi.org/10.1007/s00787-009-0046-3
[22]
Edel, M.-A., Juckel, G., & Brüne, M. (2010). Interaction of Recalled Parental ADHD Symptoms and Rearing Behavior with Current Attachment and Emotional Dysfunction in Adult Offspring with ADHD. Psychiatry Research, 178, 137-141. https://doi.org/10.1016/j.psychres.2010.04.004
[23]
Endicott, J., Nee, J., Harrison, W., & Blumenthal, R. (1993). Quality of Life Enjoyment and Satisfaction Questionnaire: A New Measure. Psychopharmacology Bulletin, 29, 321-326.
[24]
Epstein, J. N., & Kollins, S. H. (2006). Psychometric Properties of an Adult ADHD Diagnostic Interview. Journal of Attention Disorders, 9, 504-514. https://doi.org/10.1177/1087054705283575
[25]
Faraone, S. V., Biederman, J., & Mick, E. (2006). The Age-Dependent Decline of Attention Deficit Hyperactivity Disorder: A Meta-Analysis of Follow-Up Studies. Psychological Medicine, 36, 159-165. https://doi.org/10.1017/S003329170500471X
[26]
Fields, S. A., Johnson, W. M., & Hassig, M. B. (2017). Adult ADHD: Addressing a Unique Set of Challenges. The Journal of Family Practice, 66, 68-74. https://www.ncbi.nlm.nih.gov/pubmed/28222452
[27]
Finzi-Dottan, R., Manor, I., & Tyano, S. (2006). ADHD, Temperament, and Parental Style as Predictors of the Child’s Attachment Patterns. Child Psychiatry & Human Development, 37, 103-114. https://doi.org/10.1007/s10578-006-0024-7
[28]
Gingrich, B., Liu, Y., Cascio, C., Wang, Z., & Insel, T. R. (2000). Dopamine D2 Receptors in the Nucleus Accumbens Are Important for Social Attachment in Female Prairie Voles (Microtus ochrogaster). Behavioral Neuroscience, 114, 173-183. https://doi.org/10.1037/0735-7044.114.1.173
[29]
Ginsberg, Y., Hirvikoski, T., & Lindefors, N. (2010). Attention Deficit Hyperactivity Disorder (ADHD) among Longer-Term Prison Inmates Is a Prevalent, Persistent and Disabling Disorder. BMC Psychiatry, 10, Article No. 112. https://doi.org/10.1186/1471-244X-10-112
[30]
Giorgi, A. (2008). Difficulties Encountered in the Application of the Phenomenological Method in the Social Sciences. Indo-Pacific Journal of Phenomenology, 8, 1-9. https://doi.org/10.1080/20797222.2008.11433956
[31]
Glaser, B. J., & Strauss, A. L. (1965). Awareness of Dying. Chicago, IL: Aldine.
[32]
Glaser, B., & Strauss, A. (1967). The Discovery of Grounded Theory. London: Weidenfeld and Nicolson.
[33]
Goldberg, S., Muir, R., & Kerr, J. (2000). Attachment Theory: Social, Developmental and Clinical Perspectives. New York: Routledge.
[34]
Green, J., Stanley, C., & Peters, S. (2007). Disorganized Attachment Representation and Atypical Parenting in Young School Age Children with Externalizing Disorder. Attachment & Human Development, 9, 207-222. https://doi.org/10.1080/14616730701453820
[35]
Guyatt, G. H., Feeny, D. H., & Patrick, D. L. (1993). Measuring Health-Related Quality of Life. Annals of Internal Medicine, 118, 622-629. https://doi.org/10.7326/0003-4819-118-8-199304150-00009
[36]
Hansson Halleröd, S. L., Anckarsäter, H., Råstam, M., & Hansson Scherman, M. (2015). Experienced Consequences of Being Diagnosed with ADHD as an Adult—A Qualitative Study. BMC Psychiatry, 15, Article No. 31. https://doi.org/10.1186/s12888-015-0410-4
[37]
Healey, J. H., Nikolic, Z. G., Athanasian, E., & Boland, P. J. (1997). Quality of Life as Defined by Orthopedic Oncology Patients. Annals of Surgical Oncology, 4, 591-596. https://doi.org/10.1007/BF02305542
[38]
Henry, E., & Jones, S. H. (2011). Experiences of Older Adult Women Diagnosed with Attention Deficit Hyperactivity Disorder. Journal of Women & Aging, 23, 246-262. https://doi.org/10.1080/08952841.2011.589285
[39]
Hinshaw, S. P. (1992). Academic Underachievement, Attention Deficits, and Aggression: Comorbidity and Implications for Intervention. Journal of Consulting and Clinical Psychology, 60, 893-903. https://doi.org/10.1037/0022-006X.60.6.893
[40]
Holland, R., Moretti, M. M., Verlaan, V., & Peterson, S. (1993). Attachment and Conduct Disorder: The Response Program. The Canadian Journal of Psychiatry, 38, 420-431. https://doi.org/10.1177/070674379303800608
[41]
Hooley, J. M. (1985). Expressed Emotion: A Review of the Critical Literature. Clinical Psychology Review, 5, 119-139. https://doi.org/10.1016/0272-7358(85)90018-2
[42]
Kessler, R. C., Berglund, P., Demler, O., Jin, R., Merikangas, K. R., & Walters, E. E. (2005). Lifetime Prevalence and Age-of-Onset Distributions of DSM-IV Disorders in the National Comorbidity Survey Replication. Archives of General Psychiatry, 62, 593-602. https://doi.org/10.1001/archpsyc.62.6.593
[43]
Kissgen, R., Krischer, M., Kummetat, V., Spiess, R., Scheiffer, R., & Sevecke, K. (2009). Attachment Representation in Mothers of Children with Attention Deficit Hyperactivity Disorder. Psychopathology, 42, 201-208. https://doi.org/10.1159/000209333
[44]
Kolar, D., Keller, A., Golfinopoulos, M., Cumyn, L., Syer, C., & Hechtman, L. (2008). Treatment of Adults with Attention-Deficit/Hyperactivity Disorder. Neuropsychiatric Disease and Treatment, 4, 107-121. https://www.ncbi.nlm.nih.gov/pubmed/18728812 https://doi.org/10.2147/NDT.S1747
[45]
Lakatos, K., Nemoda, Z., Toth, I., Ronai, Z., Ney, K., Sasvari-Szekely, M., & Gervai, J. (2002). Further Evidence for the Role of the Dopamine D4 Receptor (DRD4) Gene in Attachment Disorganization: Interaction of the Exon III 48-bp Repeat and the -521 C/T Promoter Polymorphisms. Molecular Psychiatry, 7, 27-31. https://doi.org/10.1038/sj.mp.4000986
[46]
Landgraf, J. M. (2007). Monitoring Quality of Life in Adults with ADHD. Journal of Attention Disorders, 11, 351-362. https://doi.org/10.1177/1087054707299400
[47]
Leidy, N. K., Revicki, D. A., & Genesté, B. (1999). Recommendations for Evaluating the Validity of Quality of Life Claims for Labeling and Promotion. Value in Health, 2, 113-127. https://doi.org/10.1046/j.1524-4733.1999.02210.x
[48]
Lin, Y.-J., Lo, K.-W., Yang, L.-K., & Gau, S. S.-F. (2015). Validation of DSM-5 Age-of-Onset Criterion of Attention Deficit/Hyperactivity Disorder (ADHD) in Adults: Comparison of Life Quality, Functional Impairment, and Family Function. Research in Developmental Disabilities, 47, 48-60. https://doi.org/10.1016/j.ridd.2015.07.026
[49]
Magnússon, P., Smári, J., Sigurdardóttir, D., Baldursson, G., Sigmundsson, J., Kristjánsson, K. et al. (2006). Validity of Self-Report and Informant Rating Scales of Adult ADHD Symptoms in Comparison with a Semistructured Diagnostic Interview. Journal of Attention Disorders, 9, 494-503. https://doi.org/10.1177/1087054705283650
[50]
Mattos, P., Louzã, M. R., Palmini, A. L. F., de Oliveira, I. R., & Rocha, F. L. (2012). A Multicenter, Open-Label Trial to Evaluate the Quality of Life in Adults with ADHD Treated with Long-Acting Methylphenidate (OROS MPH): Concerta Quality of Life (CONQoL) Study. Journal of Attention Disorders, 17, 444-448. https://doi.org/10.1177/1087054711434772
[51]
McCleod, J. (2001). Qualitative Research in Counselling and Psychotherapy. Thousand Oaks, CA: Sage Publications Ltd. https://doi.org/10.4135/9781849209663
[52]
Mehringer, A. M., Downey, K. K., Schuh, L. M., Pomerleau, C. S., Snedecor, S. M., & Schbiner, H. (2002). The Assessment of Hyperactivity and Attention (AHA): Development and Preliminary Validation of a Brief Self-Assessment of Adult ADHD. Journal of Attention Disorders, 5, 223-231. https://doi.org/10.1177/108705470100500404
[53]
Michielsen, M., de Kruif, J. T. C. M., Comijs, H. C., van Mierlo, S., Semeijn, E. J., Beekman, A. T. F. et al. (2015). The Burden of ADHD in Older Adults: A Qualitative Study. Journal of Attention Disorders, 22, 591-600. https://doi.org/10.1177/1087054715610001
[54]
Mick, E., Faraone, S. V., Spencer, T., Zhang, H. F., & Biederman, J. (2008). Assessing the Validity of the Quality of Life Enjoyment and Satisfaction Questionnaire—Short Form in Adults with ADHD. Journal of Attention Disorders, 11, 504-509. https://doi.org/10.1177/1087054707308468
[55]
Murphy, K. R., & Adler, L. A. (2004). Assessing Attention-Deficit/Hyperactivity Disorder in Adults: Focus on Rating Scales. The Journal of Clinical Psychiatry, 65, 12-17.
[56]
Musser, E. D., Karalunas, S. L., Dieckmann, N., Peris, T. S., & Nigg, J. T. (2016). Attention-Deficit/Hyperactivity Disorder Developmental Trajectories Related to Parental Expressed Emotion. Journal of Abnormal Psychology, 125, 182-195. https://doi.org/10.1037/abn0000097
[57]
Niederhofer, H. (2009). Attachment as a Component of Attention-Deficit Hyperactivity Disorder. Psychological Reports, 104, 645-648. https://doi.org/10.2466/pr0.104.2.645-648
[58]
Nylander, L., Holmqvist, M., Gustafson, L., & Gillberg, C. (2009). ADHD in Adult Psychiatry. Minimum Rates and Clinical Presentation in General Psychiatry Outpatients. Nordic Journal of Psychiatry, 63, 64-71. https://doi.org/10.1080/08039480802416323
[59]
Peris, T. S., & Hinshaw, S. P. (2003). Family Dynamics and Preadolescent Girls with ADHD: The Relationship between Expressed Emotion, ADHD Symptomatology, and Comorbid Disruptive Behavior. Journal of Child Psychology and Psychiatry, 44, 1177-1190. https://doi.org/10.1111/1469-7610.00199
[60]
Pidgeon, N. (1996). Grounded Theory: Theoretical Background. Leicester: British Psychological Society Books.
[61]
Psychogiou, L., Daley, D. M., Thompson, M. J., & Sonuga-Barke, E. J. (2007). Mothers’ Expressed Emotion toward Their School-Aged Sons. Associations with Child and Maternal Symptoms of Psychopathology. European Child and Adolescent Psychiatry, 16, 458-464. https://doi.org/10.1007/s00787-007-0619-y
[62]
Reiner, I., & Spangler, G. (2010). Adult Attachment and Gene Polymorphisms of the Dopamine D4 Receptor and Serotonin Transporter (5-HTT). Attachment & Human Development, 12, 209-229. https://doi.org/10.1080/14616731003759674
[63]
Robins, L. N., & Regier, D. A. (1991). Psychiatric Disorders in America: The Epidemiologic Catchment Area Study. New York: The Free Press.
[64]
Rösler, M., Ginsberg, Y., Arngrim, T., Adamou, M., Niemelä, A., Dejonkheere, J. et al. (2013). Correlation of Symptomatic Improvements with Functional Improvements and Patient-Reported Outcomes in Adults with Attention-Deficit/Hyperactivity Disorder Treated with OROS Methylphenidate. The World Journal of Biological Psychiatry, 14, 282-290. https://doi.org/10.3109/15622975.2011.571283
[65]
Safren, S. A., Sprich, S. E., Cooper-Vince, C., Knouse, L. E., & Lerner, J. A. (2010). Life Impairments in Adults with Medication-Treated ADHD. Journal of Attention Disorders, 13, 524-531. https://doi.org/10.1177/1087054709332460
[66]
Schachar, R., Taylor, E., Wieselberg, M., Thorley, G., & Rutter, M. (1987). Changes in Family Function and Relationships in Children Who Respond to Methylphenidate. Journal of the American Academy of Child & Adolescent Psychiatry, 26, 728-732. https://doi.org/10.1097/00004583-198709000-00019
[67]
Sonuga-Barke, E. J. S., Lasky-Su, J., Neale, B. M., Oades, R., Chen, W., Franke, B. et al. (2008). Does Parental Expressed Emotion Moderate Genetic Effects in ADHD? An Exploration Using a Genome Wide Association Scan. American Journal of Medical Genetics Part B: Neuropsychiatric Genetics, 147B, 1359-1368. https://doi.org/10.1002/ajmg.b.30860
[68]
Steele, M., Jensen, P. S., & Quinn, D. M. P. (2006). Remission versus Response as the Goal of Therapy in ADHD: A New Standard for the Field? Clinical Therapeutics, 28, 1892-1908. https://doi.org/10.1016/j.clinthera.2006.11.006
[69]
Storebø, O. J., Ramstad, E., Krogh, H. B., Nilausen, T. D., Skoog, M., Holmskov, M. et al. (2015). Methylphenidate for Children and Adolescents with Attention Deficit Hyperactivity Disorder (ADHD). Cochrane Database of Systematic Reviews, No. 11, Cd009885. https://doi.org/10.1002/14651858.CD009885.pub2
[70]
Taylor, A., Deb, S., & Unwin, G. (2011). Scales for the Identification of Adults with Attention Deficit Hyperactivity Disorder (ADHD): A Systematic Review. Research in Developmental Disabilities, 32, 924-938. https://doi.org/10.1016/j.ridd.2010.12.036
[71]
Weiss, M., Childress, A., Mattingly, G., Nordbrock, E., Kupper, R. J., & Adjei, A. L. (2018). Relationship between Symptomatic and Functional Improvement and Remission in a Treatment Response to Stimulant Trial. Journal of Child and Adolescent Psychopharmacology, 28, 521-529. https://doi.org/10.1089/cap.2017.0166
[72]
Wender, P. H. (1995). Attention-Deficit Hyperactivity Disorder in Adults. New York: Oxford University Press.
