Stigma experienced by ALS/PMA patients and their caregivers: a mixed-methods study

References

• van der Beek KM, Bos I, Middel B, Wynia K. Experienced stigmatization reduced quality of life of patients with a neuromuscular disease: a cross-sectional study. Clin Rehabil. 2013;27:1029–38.
   PubMed Web of Science ®Google Scholar
• Leigh N, Simpson J, Eccles FJR. Does a lack of social support and perceived stigma influence the relationship between motor neurone disease-related stress and psychological distress? Br J Health Psychol. 2021;26:289–306.
   PubMed Web of Science ®Google Scholar
• Eicher C, Kiselev J, Brukamp K, Kiemel D, Spittel S, Maier A, et al. Experiences with assistive technologies and devices (ATD) in patients with amyotrophic lateral sclerosis (ALS) and their caregivers. Tad. 2019;31:203–15.
   Google Scholar
• Molina Y, Choi SW, Cella D, Rao D. The stigma scale for chronic illnesses 8-item version (SSCI-8): development, validation and use across neurological conditions. Int J Behav Med. 2013;20:450–60.
   PubMed Web of Science ®Google Scholar
• Soundy A, Condon N. Patients experiences of maintaining mental well-being and hope within motor neuron disease: a thematic synthesis. Front Psychol. 2015;6:606.
   PubMed Web of Science ®Google Scholar
• Verity D. Stigma, perceived control and health-related quality of life for individuals experiencing Parkinson’s disease [Doctoral thesis]. Lancaster University; 2018.
   Google Scholar
• Schlüter DK, Tennant A, Mills R, Diggle PJ, Young CA. Risk factors for social withdrawal in amyotrophic lateral sclerosis/motor neurone disease. Amyotroph Lateral Scler Frontotemporal Degener. 2018;19:591–8.
   PubMed Web of Science ®Google Scholar
• Wong CCY, Knee CR, Neighbors C, Zvolensky MJ. Hacking stigma by loving yourself: a mediated-moderation model of self-compassion and stigma. Mindfulness 2019;10:415–33.
   Web of Science ®Google Scholar
• Scambler G. Re-framing stigma: Felt and enacted stigma and challenges to the sociology of chronic and disabling conditions. Soc Theory Health. 2004;2:29–46.
   Google Scholar
• Mak WWS, Cheung RYM. Affiliate stigma among caregivers of people with intellectual disability or mental illness. J Appl Res Intellect Disabil. 2008;21:532–45.
   Web of Science ®Google Scholar
• Werner P, Mittelman MS, Goldstein D, Heinik J. Family stigma and caregiver burden in Alzheimer’s disease. Gerontologist. 2012;52:89–97.
   PubMed Web of Science ®Google Scholar
• Kahn PV, Wishart HA, Randolph JS, Santulli RB. Caregiver stigma and burden in memory disorders: an evaluation of the effects of caregiver type and gender. Curr Gerontol Geriatr Res. 2016;2016:8316045.
   PubMedGoogle Scholar
• Henry RS, Perrin PB, Lageman SK, Villasenor T, Cariello AN, Pugh JM, et al. Parkinson’s symptoms and caregiver affiliate stigma: a multinational study. Curr Alzheimer Res. 2021;18:222–31.
   PubMed Web of Science ®Google Scholar
• Rao D, Choi SW, Victorson D, Bode R, Peterman A, Heinemann A, et al. Measuring stigma across neurological conditions: the development of the stigma scale for chronic illness (SSCI). Qual Life Res. 2009;18:585–95.
   PubMed Web of Science ®Google Scholar
• Cedarbaum JM, Stambler N, Malta E, Fuller C, Hilt D, Thurmond B, et al. The ALSFRS-R: a revised ALS Functional Rating Scale that incorporates assessments of respiratory function. J Neurol Sci. 1999;169:13–21.
   PubMed Web of Science ®Google Scholar
• Balendra R, Jones A, Jivraj N, Knights C, Ellis CM, Burman R, et al. Estimating clinical stage of amyotrophic lateral sclerosis from the ALS Functional Rating Scale. Amyotroph Lateral Scler Frontotemporal Degener. 2014;15:279–84.
   PubMed Web of Science ®Google Scholar
• Hsieh HF, Shannon SE. Three approaches to qualitative content analysis. Qual Health Res. 2005;15:1277–88.
   PubMed Web of Science ®Google Scholar
• Mechanic D. Response factors in illness: the study of illness behavior. Soc Psychiatry. 1966;1:11–20.
   Google Scholar
• Kirana PS, Rosen R, Hatzichristou D. Subjective well-being as a determinant of individuals’ responses to symptoms: a biopsychosocial perspective. Int J Clin Pract. 2009;63:1435–45.
   PubMed Web of Science ®Google Scholar
• Rai SS, Syurina EV, Peters RMH, Putri AI, Zweekhorst MBM. Non-communicable diseases-related stigma: a mixed-methods systematic review. Int J Environ Res Public Health 2020;17:6657.
   PubMed Web of Science ®Google Scholar
• Knapp S, Marziliano A, Moyer A. Identity threat and stigma in cancer patients. Health Psychol Open. 2014;1:2055102914552281.
   Google Scholar
• Ernst J, Mehnert A, Dietz A, Hornemann B, Esser P. Perceived stigmatization and its impact on quality of life – results from a large register-based study including breast, colon, prostate and lung cancer patients. BMC Cancer. 2017;17:741.
   PubMed Web of Science ®Google Scholar
• Chiong-Rivero H, Ryan GW, Flippen C, Bordelon Y, Szumski NR, Zesiewicz TA, et al. Patients’ and caregivers’ experiences of the impact of Parkinson’s disease on health status. Patient Relat Outcome Meas. 2011;2011:57–70.
   PubMedGoogle Scholar
• Maffoni M, Giardini A, Pierobon A, Ferrazzoli D, Frazzitta G. Stigma experienced by Parkinson’s disease patients: a descriptive review of qualitative studies. Parkinsons Dis. 2017;2017:7203259.
   PubMed Web of Science ®Google Scholar
• Hugel H, Grundy N, Rigby S, Young CA. How does current care practice influence the experience of a new diagnosis of motor neuron disease? A qualitative study of current guidelines-based practice. Amyotroph Lateral Scler. 2006;7:161–6.
   PubMed Web of Science ®Google Scholar
• Hou M, Mao X, Hou X, Li K. Stigma and associated correlates of elderly patients with Parkinson’s disease. Front Psychiatry. 2021;12:708960.
   PubMed Web of Science ®Google Scholar
• Roach A, Averill A, Segerstrom S, Kasarskis E. The dynamics of quality of life in ALS patients and caregivers. Ann Behav Med. 2009;37:197–206.
   PubMed Web of Science ®Google Scholar
• Hanff AM, Leist AK, Fritz JV, Pauly C, Kruger R, Halek M, NCER-PD Consortium. Determinants of self-stigma in people with Parkinson’s disease: a mixed methods scoping review. J Parkinsons Dis. 2022;12:509–22.
   PubMedGoogle Scholar