Psychological distress and coping styles of caregivers of patients with amyotrophic lateral sclerosis: a longitudinal study

References

• Cipolletta S, Amicucci L. The family experience of living with a person with amyotrophic lateral sclerosis: a qualitative study. Int J Psychol. 2015;50:288–94.
   PubMed Web of Science ®Google Scholar
• Gauthier A, Vignola A, Calvo A, Cavallo E, Moglia C, Sellitti L, et al. A longitudinal study on quality of life and depression in ALS patient-caregiver couples. Neurology. 2007;68:923–6.
   PubMed Web of Science ®Google Scholar
• Goldstein LH, Atkins L, Landau S, Brown R, Leigh PN. Predictors of psychological distress in carers of people with amyotrophic lateral sclerosis: a longitudinal study. Psychol Med. 2006;36:865–75.
   PubMed Web of Science ®Google Scholar
• Ridner SH. Psychological distress: concept analysis. J Adv Nurs. 2004;45:536–45.
   PubMed Web of Science ®Google Scholar
• Anderson NH, Gluyas C, Mathers S, Hudson P, Ugalde A. “A monster that lives in our lives”: experiences of caregivers of people with motor neuron disease and identifying avenues for support. BMJ Support Palliat Care. 2016. [Epub ahead of print].
   PubMedGoogle Scholar
• Goldstein LH, Abrahams S. Changes in cognition and behaviour in amyotrophic lateral sclerosis: nature of impairment and implications for assessment. Lancet Neurology. 2013;12:368–80.
   PubMed Web of Science ®Google Scholar
• Jansen JE, Gleeson J, Cotton S. Towards a better understanding of caregiver distress in early psychosis: a systematic review of the psychological factors involved. Clin Psychol Rev. 2015;35:56–66.
   PubMed Web of Science ®Google Scholar
• Smyth JM, Filipkowski KB. Coping with stress. In: French D, Vedhara K, Kapitein AA, et al., ed. Health Psychology. 2nd ed. Oxford: The British Psychological Society and Blackwell Publishing Ltd; 2010.
   Google Scholar
• Carver CS, Scheier MF, Weintraub JK. Assessing coping strategies: a theoretically based approach. J Pers Soc Psychol. 1989;56:267–83.
   PubMed Web of Science ®Google Scholar
• Lazarus RS, Folkman S. Stress, appraisal, and coping. New York: Springer; 1984.
   Google Scholar
• Endler NS, Parker JD. Multidimensional assessment of coping: a critical evaluation. J Pers Soc Psychol. 1990;58:844–54.
   PubMed Web of Science ®Google Scholar
• Lazarus RS. The costs and benefits of denial. Fifty years of the research and theory of RS Lazarus: an analysis of historical and perennial issues. New Jersey: Lawrence Erlbaum Association; 1998. p. 227–51.
   Google Scholar
• Hanks RA, Rapport LJ, Vangel S. Caregiving appraisal after traumatic brain injury: the effects of functional status, coping style, social support and family functioning. NeuroRehab. 2007;22:43–52.
   PubMed Web of Science ®Google Scholar
• Iavarone A, Ziello AR, Pastore F, Fasanaro AM, Poderico C. Caregiver burden and coping strategies in caregivers of patients with Alzheimer’s disease. Neuropsych Dis Treat. 2014;10:1407–13.
   PubMed Web of Science ®Google Scholar
• Siciliano M, Santangelo G, Trojsi F, Di Somma C, Patrone M, Femiano C, et al. Coping strategies and psychological distress in caregivers of patients with Amyotrophic Lateral Sclerosis (ALS). Amyotroph Lateral Scler Frontotemporal Degener. 2017;18:367–77.
   PubMed Web of Science ®Google Scholar
• Van Groenestijn AC, van de Port IG, Schroder CD, Post MW, Grupstra HF, Kruitwagen ET, et al. Effects of aerobic exercise therapy and cognitive behavioural therapy on functioning and quality of life in amyotrophic lateral sclerosis: protocol of the FACTS-2-ALS trial. BMC Neurol. 2011;11:70.
   PubMed Web of Science ®Google Scholar
• Brooks BR, Miller RG, Swash M, Munsat TL, World Federation of Neurology Research Group on Motor Neuron D. El Escorial revisited: revised criteria for the diagnosis of amyotrophic lateral sclerosis. Amyotroph Lateral Scler Other Motor Neuron Disord 20. 2000;1:293–9.
   PubMed Web of Science ®Google Scholar
• Linn BS, Linn MW, Gurel L. Cumulative illness rating scale. J Am Geriatr Soc. 1968;16:622–6.
   PubMed Web of Science ®Google Scholar
• Van den Berg JP, Kalmijn S, Lindeman E, Veldink JH, de Visser M, Van der Graaff MM, et al. Multidisciplinary ALS care improves quality of life in patients with ALS. Neurology. 2005;65:1264–7.
   PubMed Web of Science ®Google Scholar
• Zigmond AS, Snaith RP. The hospital anxiety and depression scale. Acta Psychiat Scand. 1983;67:361–70.
   PubMed Web of Science ®Google Scholar
• Bjelland I, Dahl AA, Haug TT, Neckelmann D. The validity of the Hospital Anxiety and Depression Scale. An updated literature review. J Psychosom Res. 2002;52:69–77.
   PubMed Web of Science ®Google Scholar
• Pallant JF, Tennant A. An introduction to the Rasch measurement model: an example using the Hospital Anxiety and Depression Scale (HADS). Br J Clin Psychol. 2007;46:1–18.
   PubMed Web of Science ®Google Scholar
• De Ridder D, Van Heck GL. Coping inventory for stressful situations. CISS, Dutch version. Lisse: Harcourt Test Publishers; 2004.
   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
• Creemers H, de Moree S, Veldink JH, Nollet F, van den Berg LH, Beelen A. Factors related to caregiver strain in ALS: a longitudinal study. J Neurol Neurosurg Psych. 2016;87:775–81.
   PubMed Web of Science ®Google Scholar
• Edwards B, Clarke V. The psychological impact of a cancer diagnosis on families: the influence of family functioning and patients’ illness characteristics on depression and anxiety. Psychooncology. 2004;13:562–76.
   PubMed Web of Science ®Google Scholar
• Lehto US, Aromaa A, Tammela TL. Experiences and psychological distress of spouses of prostate cancer patients at time of diagnosis and primary treatment. Eur J Cancer Care. 2018;27:1–11.
   Web of Science ®Google Scholar
• Crespo M, Lopez J, Zarit SH. Depression and anxiety in primary caregivers: a comparative study of caregivers of demented and nondemented older persons. Int J Geriatr Psych. 2005;20:591–2.
   PubMed Web of Science ®Google Scholar
• Endler NS, Speer RL, Johnson JM, Flett GL. Controllability, coping, efficacy, and distress. Eur J Personal. 2000;14:245–64.
   Web of Science ®Google Scholar
• Stanton AL, Danoff-Burg S, Cameron CL, Ellis AP. Coping through emotional approach: problems of conceptualization and confounding. J Pers Soc Psychol. 1994;66:350–62.
   PubMed Web of Science ®Google Scholar
• Gilhooly KJ, Gilhooly ML, Sullivan MP, McIntyre A, Wilson L, Harding E, et al. A meta-review of stress, coping and interventions in dementia and dementia caregiving. BMC Geriatr. 2016;16:106.
   PubMed Web of Science ®Google Scholar
• Di Mattei VE, Prunas A, Novella L, Marcone A, Cappa SF, Sarno L. The burden of distress in caregivers of elderly demented patients and its relationship with coping strategies. Neurol Sci. 2008;29:383–9.
   PubMed Web of Science ®Google Scholar
• Kato T. Development of the Coping Flexibility Scale: evidence for the coping flexibility hypothesis. J Couns Psychol. 2012;59:262–73.
   PubMed Web of Science ®Google Scholar
• Rabkin JG, Wagner GJ, Del Bene M. Resilience and distress among amyotrophic lateral sclerosis patients and caregivers. Psychosom Med. 2000;62:271–9.
   PubMed Web of Science ®Google Scholar