Blended psychosocial support for partners of patients with ALS and PMA: results of a randomized controlled trial

References

• van Es MA, Hardiman O, Chio A, Al-Chalabi A, Pasterkamp RJ, Veldink JH, et al. Amyotrophic lateral sclerosis. Lancet. 2017;390:2084–98.
   PubMed Web of Science ®Google Scholar
• McLeod JE, Clarke DM. A review of psychosocial aspects of motor neurone disease. J Neurol Sci. 2007;258:4–10.
   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 Sc. 2006;7:161–6.
   PubMed Web of Science ®Google Scholar
• Molloy GJ, Johnston DW, Johnston M, Morrison V, Pollard B, Bonetti D, et al. Extending the demand-control model to informal caregiving. J Psychosom Res. 2005;58:243–51.
   PubMed Web of Science ®Google Scholar
• de Wit J, Bakker LA, van Groenestijn AC, et al. Psychological distress and coping styles of caregivers of patients with amyotrophic lateral sclerosis: a longitudinal study. Amyotroph Lateral Scler Frontotemporal Degener. 2019;20:235–241.
   PubMed Web of Science ®Google Scholar
• de Wit J, Schröder C, el Mecky J, et al. Support needs of caregivers of patients with amyotrophic lateral sclerosis: a qualitative study. Palliat Support Care. 2019;17:195–201..
   PubMed Web of Science ®Google Scholar
• Larsson BJ, Fröjd C, Nordin K, Nygren I. Relatives of patients with amyotrophic lateral sclerosis: their experience of care and support. Pall Supp Care. 2015;13:1569–77.
   PubMed Web of Science ®Google Scholar
• O’Brien MR, Whitehead B, Jack BA, Mitchell JD. The need for support services for family carers of people with motor neurone disease (MND): views of current and former family caregivers a qualitative study. Disabil Rehabil. 2012;34:247–56.
   PubMed Web of Science ®Google Scholar
• Wentzel J, van der Vaart R, Bohlmeijer ET, et al. Mixing online and face-to-face therapy: how to benefit from blended care in mental health care. JMIR Ment Health. 2016;3:e9.
   PubMed Web of Science ®Google Scholar
• Losada A, Márquez-González M, Romero-Moreno R, Mausbach BT, López J, Fernández-Fernández V, et al. Cognitive-behavioral therapy (CBT) versus Acceptance and Commitment Therapy (ACT) for dementia family caregivers with significant depressive symptoms: results of a randomized clinical trial. J Consult Clin Psychol. 2015;83:760–72.
   PubMed Web of Science ®Google Scholar
• Burke K, Muscara F, McCarthy M, Dimovski A, Hearps S, Anderson V, et al. Adapting Acceptance and Commitment Therapy for parents of children with life-threatening illness: pilot study. Fam Syst Health. 2014;32:122–7.
   PubMed Web of Science ®Google Scholar
• de Wit J, Beelen A, Drossaert CHC, Kolijn R, van den Berg LH, Visser-Meily JMA, et al. A blended psychosocial support program for partners of patients with amyotrophic lateral sclerosis and progressive muscular atrophy: protocol of a randomized controlled trial. BMC Psychol. 2018;6:20.
   PubMedGoogle Scholar
• Moher D, Schulz KF, Altman DG. The CONSORT statement: revised recommendations for improving the quality of reports of parallel-group randomised trials. Lancet. 2001;357:1191–4.
   PubMed Web of Science ®Google Scholar
• Köhle N, Drossaert CHC, Jaran J, Schreurs KMG, Verdonck-de Leeuw IM, Bohlmeijer ET, et al. User-experiences with a web-based self-help intervention for partners of cancer patients based on Acceptance and Commitment Therapy and self-compassion: a qualitative study. BMC Public Health. 2017;17:225.
   PubMed Web of Science ®Google Scholar
• Köhle N, Drossaert CHC, Schreurs KM, Hagedoorn M, Verdonck-de Leeuw IM, Bohlmeijer ET, et al. A web-based self-help intervention for partners of cancer patients based on Acceptance and Commitment Therapy: a protocol of a randomized controlled trial. BMC Public Health. 2015;15:303.
   PubMed Web of Science ®Google Scholar
• Zigmond AS, Snaith RP. The hospital anxiety and depression scale. Acta Psychiatr Scand. 1983;67:361–70.
   PubMed Web of Science ®Google Scholar
• Bédard M, Molloy DW, Squire L, Dubois S, Lever JA, O'Donnell M, et al. The Zarit Burden Interview: a new short version and screening version. Gerontologist. 2001;41:652–7.
   PubMed Web of Science ®Google Scholar
• Brouwer WBF, van Exel NJA, van Gorp B, Redekop WK. The CarerQol instrument: a new instrument to measure care-related quality of life of informal caregivers for use in economic evaluations. Qual Life Res. 2006;15:1005–21.
   PubMed Web of Science ®Google Scholar
• Cohen SR, Mount BM, Strobel MG, Bui F. The McGill Quality of Life Questionnaire: a measure of quality of life appropriate for people with advanced disease. A preliminary study of validity and acceptability. Palliat Med. 1995;9:207–19.
   PubMed Web of Science ®Google Scholar
• Steffen AM, McKibbin C, Zeiss AM, Gallagher-Thompson D, Bandura A. The revised scale for caregiving self-efficacy: reliability and validity studies. J Gerontol B Psychol Sci Soc Sci. 2002;57:P74–86.
   PubMed Web of Science ®Google Scholar
• Karasek R, Brisson C, Kawakami N, Houtman I, Bongers P, Amick B, et al. The Job Content Questionnaire (JCQ): an instrument for internationally comparative assessments of psychosocial job characteristics. J Occup Health Psychol. 1998;3:322–55.
   PubMedGoogle Scholar
• Zimet GD, Dahlem NW, Zimet SG, Farley GK. The Multidimensional Scale of Perceived Social Support. J Pers Assess. 1988;52:30–41.
   Web of Science ®Google Scholar
• Lange A. Handleiding Interactionele Probleem Oplossings Vragenlijst (IPOV) [Manual for Interactional Problem- Solving Inventory (IPSI)]. Deventer: Van Loghum Slaterus; 1983.
   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
• Raaphorst J, Beeldman E, Schmand B, Berkhout J, Linssen WHJP, van den Berg LH, et al. The ALS-FTD-Q: a new screening tool for behavioral disturbances in ALS. Neurology. 2012;79:1377–83.
   PubMed Web of Science ®Google Scholar
• Cousineau N, McDowell I, Hotz S, Hébert P. Measuring chronic patients’ feelings of being a burden to their caregivers: development and preliminary validation of a scale. Med Care. 2003;41:110–8.
   PubMed Web of Science ®Google Scholar
• Larsen DL, Attkisson CC, Hargreaves WA, Nguyen TD. Assessment of client/patient satisfaction: development of a general scale. Eval Program Plann. 1979;2:197–207.
   PubMedGoogle Scholar
• Hoefman R, Van Exel N, Brouwer W. iMTA Valuation of Informal Care Questionnaire (iVICQ). Version 1.0. Rotterdam: iBMG/iMTA; 2011.
   Google Scholar
• Twisk J, de Boer M, de Vente W, Heymans M. Multiple imputation of missing values was not necessary before performing a longitudinal mixed-model analysis. J Clin Epidemiol. 2013;66:1022–8.
   PubMed Web of Science ®Google Scholar
• Christensen H, Griffiths KM, Farrer L. Adherence in internet interventions for anxiety and depression: systematic review. J Med Internet Res. 2009;11:e13.
   PubMed Web of Science ®Google Scholar
• Blom MM, Zarit SH, Groot Zwaaftink RBM, Cuijpers P, Pot AM. Effectiveness of an internet intervention for family caregivers of people with dementia: results of a randomized controlled trial. PLoS One. 2015;10:e0116622.
   PubMed Web of Science ®Google Scholar
• Chio A, Gauthier A, Vignola A, Calvo A, Ghiglione P, Cavallo E, et al. Caregiver time use in ALS. Neurology. 2006;67:902–4.
   PubMed Web of Science ®Google Scholar
• Giosa J, Holyoke P. Caregiving is not a disease: moving from reactive to proactive supports for family caregivers across the healthcare system. Hcq. 2014;17:36–41.
   Google Scholar
• Vernooij-Dassen M, Lamers C, Bor J, Felling A, Grol R. Prognostic factors of effectiveness of a support program for caregivers of dementia patients. Int J Aging Hum Dev. 2000;51:259–74.
   PubMed Web of Science ®Google Scholar
• Stroebe M, Schut H. The dual process model of coping with bereavement: rationale and description. Death Stud. 1999;23:197–224.
   PubMed Web of Science ®Google Scholar
• Stroebe MSS. Meaning making in the dual process model of coping with bereavement. In: Neimeyer R, ed. Meaning reconstruction, the experience of loss. Washington, DC: American Psychological Association; 2001:55–73.
   Google Scholar
• Tang WK, Chan C. Effects of psychosocial interventions on self-efficacy of dementia caregivers: a literature review. Int J Geriatr Psychiatry. 2016;31:475–93.
   PubMed Web of Science ®Google Scholar
• Aoun SM, Bentley B, Funk L, Toye C, Grande G, Stajduhar KJ, et al. A 10-year literature review of family caregiving for motor neurone disease: moving from caregiver burden studies to palliative care interventions. Palliat Med. 2013;27:437–46.
   PubMed Web of Science ®Google Scholar
• de Wit J, Vervoort SCJM, van Eerden E, van den Berg LH, Visser-Meily JMA, Beelen A, et al. User perspectives on a psychosocial blended support program for partners of patients with amyotrophic lateral sclerosis and progressive muscular atrophy: a qualitative study. BMC Psychol. 2019;7:35.
   PubMedGoogle Scholar
• Collins LM, Murphy SA, Bierman KL. A conceptual framework for adaptive preventive interventions. Prev Sci. 2004;5:185–96.
   PubMed Web of Science ®Google Scholar
• Eysenbach G. What is e-health? J Med Internet Res. 2001;3:e20.
   PubMed Web of Science ®Google Scholar
• LvG H Kip P, Kelders SM, et al. Introducing eHealth. In: Pijnen LvG-, Kelders SM, Kip H, et al. editors. eHealth research, theory and development. Abingdon: Routledge; 2018:23–46.
   Google Scholar
• Bradley M, Braverman J, Harrington M, Wicks P. Patients’ motivations and interest in research: characteristics of volunteers for patient-led projects on PatientsLikeMe. Res Involv Engagem. 2016;2:33.
   PubMedGoogle 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
• Galvin M, Corr B, Madden C, Mays I, McQuillan R, Timonen V, et al. Caregiving in ALS – a mixed methods approach to the study of Burden. BMC Palliat Care. 2016;15:81.
   PubMed Web of Science ®Google Scholar
• Gibbons CJ, Mills RJ, Thornton EW, Ealing J, Mitchell JD, Shaw PJ, et al. Rasch analysis of the hospital anxiety and depression scale (HADS) for use in motor neurone disease. Health Qual Life Outcomes. 2011;9:82.
   PubMed Web of Science ®Google Scholar
• Tate RL, Perdices M, McDonald S, Togher L, Rosenkoetter U. The design, conduct and report of single-case research: resources to improve the quality of the neurorehabilitation literature. Neuropsychol Rehabil. 2014;24:315–31.
   PubMed Web of Science ®Google Scholar