User perspectives on a psychosocial blended support program for partners of patients with amyotrophic lateral sclerosis and progressive muscular atrophy: a qualitative study
Tóm tắt
Partners are often the main caregivers in the care for patients with amyotrophic lateral sclerosis (ALS) and progressive muscular atrophy (PMA). Providing care during the progressive and fatal disease course of these patients is challenging and many caregivers experience feelings of distress. A blended psychosocial support program based on Acceptance and Commitment Therapy was developed to support partners of patients with ALS and PMA. The aim of this qualitative study is to gather insight into experiences with different components of the support program (program evaluation) and to discover what caregivers gained from following the program (mechanisms of impact). Individual in-depth interviews, about caregivers’ experiences with the support program were conducted with 23 caregivers of ALS/PMA patients enrolled in a randomized controlled trial designed to measure the effectiveness of the blended psychosocial support program. The program, performed under the guidance of a psychologist, consists of psychoeducation, psychological and mindfulness exercises, practical tips and information, and options for peer contact. Interviews were audio-recorded, transcribed verbatim and analyzed thematically. The program evaluation showed that caregivers perceived each component of the program as beneficial but ambivalent reactions were expressed about the mindfulness exercises and peer contact functions. Caregivers expressed the need for a more personalized program with respect to the order and timing of the modules and wanted to continue the support program for a longer time. The main mechanism of impact of the program that caregivers reported was that they became more aware of their own situation. They further indicated that the program helped them to perceive control over the caregiving situation, to accept negative emotions and thoughts, to be there for their partner and feel acknowledged. The blended psychosocial support program for caregivers of patients with ALS/PMA is valued by caregivers for enhancing self-reflection on their challenging situation which stimulated them to make choices in line with their own needs and increased their feeling of control over caregiving. The different components of the program were overall appreciated by caregivers, but the mindfulness and peer support components should be further adapted to the needs of the caregivers. Dutch Trialregister
NTR5734
, registered 28 March 2016.
Tài liệu tham khảo
Holkham L, Soundy A. The experience of informal caregivers of patients with motor neurone disease: a thematic synthesis. Palliat Support Care. 2018;16(4):487–96.
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(3):243–51.
Orbell S, Gillies B. What’s stressful about caring? J Appl Soc Psychol. 1993;23:272–90.
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(12):923–6.
Burke T, Elamin M, Galvin M, Hardiman O, Pender N. Caregiver burden in amyotrophic lateral sclerosis: a cross-sectional investigation of predictors. J Neurol. 2015;262(6):1526–32.
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(3):247–56.
Aoun SM, Bentley B, Funk L, Toye C, Grande G, Stajduhar KJ. A 10-year literature review of family caregiving for motor neurone disease: moving from caregiver burden studies to palliative care interventions. Palliative Med. 2013;27(5):437–46.
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(1):20.
Hayes SC, Strosahl K, Wilson KG. Acceptance and commitment therapy: an experiential approach to behavior change. New York: Guilford; 1999.
Kohle N, Drossaert CH, Schreurs KM, Hagedoorn M, Verdonck-de Leeuw IM, Bohlmeijer ET. 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.
Moore GF, Audrey S, Barker M, Bond L, Bonell C, Hardeman W, et al. Process evaluation of complex interventions: Medical Research Council guidance. BMJ. 2015;350:h1258.
Oakley A, Strange V, Bonell C, Allen E, Stephenson J, Team RS. Process evaluation in randomised controlled trials of complex interventions. BMJ. 2006;332(7538):413–6.
Craig P, Dieppe P, Macintyre S, Michie S, Nazareth I, Petticrew M. Developing and evaluating complex interventions: the new Medical Research Council guidance. Int J Nurs Stud. 2013;50(5):587–92.
Guest G, Bunce A, Johnson L. How many interviews are enough? An experiment with data saturation and variability. Field Methods. 2006;18(1):59–82.
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(1–2):13–21.
Raaphorst J, Beeldman E, Schmand B, Berkhout J, Linssen WH, van den Berg LH, et al. The ALS-FTD-Q: a new screening tool for behavioral disturbances in ALS. Neurology. 2012;79(13):1377–83.
Braun V, Clarke V. Using thematic analysis in psychology. Qual Res Psychol. 2006;3(2):77–101.
O'Brien BC, Harris IB, Beckman TJ, Reed DA, Cook DA. Standards for reporting qualitative research: a synthesis of recommendations. Acad Med. 2014;89(9):1245–51.
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;1–7. Epub ahead of print.
Norcross JC, Krebs PM, Prochaska JO. Stages of change. J Clin Psychol. 2011;67(2):143–54.
Sauer SE, Baer RA. Responding to negative internal experience: relationships between acceptance and change-based approaches and psychological adjustment. J Psychopathol Behav. 2009;31(4):378–86.
Badr H, Taylor CL. Sexual dysfunction and spousal communication in couples coping with prostate cancer. Psycho-Oncol. 2009;18(7):735–46.
Manne S, Badr H. Intimacy and relationship processes in couples' psychosocial adaptation to cancer. Cancer. 2008;112(11 Suppl):2541–55.
Manne S, Ostroff J, Rini C, Fox K, Goldstein L, Grana G. The interpersonal process model of intimacy: the role of self-disclosure, partner disclosure, and partner responsiveness in interactions between breast cancer patients and their partners. J Fam Psychol. 2004;18(4):589–99.
Hinnen C, Hagedoorn M, Sanderman R, Ranchor AV. The role of distress, neuroticism and time since diagnosis in explaining support behaviors in partners of women with breast cancer: results of a longitudinal analysis. Psycho-Oncol. 2007;16(10):913–9.
Manne SL, Norton TR, Ostroff JS, Winkel G, Fox K, Grana G. Protective buffering and psychological distress among couples coping with breast cancer: the moderating role of relationship satisfaction. J Fam Psychol. 2007;21(3):380–8.
Aoun SM, Connors SL, Priddis L, Breen LJ, Colyer S. Motor Neurone disease family carers' experiences of caring, palliative care and bereavement: an exploratory qualitative study. Palliat Med. 2012;26(6):842–50.
Northouse L, Schafenacker A, Barr KLC, Katapodi M, Yoon H, Brittain K, et al. A tailored web-based psychoeducational intervention for cancer patients and their family caregivers. Cancer Nurs. 2014;37(5):321–30.
Glynn SM, Randolph ET, Garrick T, Lui A. A proof of concept trial of an online psychoeducational program for relatives of both veterans and civilians living with schizophrenia. Psychiatr Rehabil J. 2009;33(4):278–87.
Boots LM, de Vugt ME, Withagen HE, Kempen GI, Verhey FR. Development and initial evaluation of the web-based self-management program "partner in balance" for family caregivers of people with early stage dementia: an exploratory mixed-methods study. JMIR Res Protoc. 2016;5(1):e33.
Gluyas C, Mathers S, Hennessy Anderson N, Ugalde A. Factors to consider for motor neurone disease carer intervention research: a narrative literature review. Palliat Support Care. 2017;15(5):600–8.
Collins RN, Kishita N. The effectiveness of mindfulness- and acceptance-based interventions for informal caregivers of people with dementia: a meta-analysis. Gerontologist. 2018;1–17. https://doi.org/10.1093/geront/gny024.
Hearn JH, Cotter I, Finlay KA. Efficacy of internet-delivered mindfulness for improving depression in caregivers of people with spinal cord injuries and chronic neuropathic pain; a randomized controlled feasibility trial. Arch Phys Med Rehabil. 2018;100(1):17–25.
Creswell JD. Mindfulness interventions. Annu Rev Psychol. 2017;68:491–516.
Kohle N, Drossaert CH, Jaran J, Schreurs KM, Leeuw IM, Bohlmeijer ET. 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(1):225.
Locock L, Brown JB. ‘All in the same boat’? Patient and carer attitudes to peer support and social comparison in motor Neurone disease (MND). Soc Sci Med. 2010;71(8):1498–505.
Taylor SE, Lobel M. Social comparison activity under threat: downward evaluation and upward contacts. Psychol Rev. 1989;96(4):569–75.
Galvin M, Carney S, Corr B, Mays I, Pender N, Hardiman O. Needs of informal caregivers across the caregiving course in amyotrophic lateral sclerosis: a qualitative analysis. BMJ Open. 2018;8(1):e018721.
Larsson BJ, Frojd C, Nordin K, Nygren I. Relatives of patients with amyotrophic lateral sclerosis: their experience of care and support. Palliat Support Care. 2015;13(6):1569–77.
Sorensen S, Pinquart M, Duberstein P. How effective are interventions with caregivers? An updated meta-analysis. Gerontologist. 2002;42(3):356–72.
Collins LM, Murphy SA, Bierman KL. A conceptual framework for adaptive preventive interventions. Prev Sci. 2004;5(3):185–96.
Irvine A. Duration, dominance and depth in telephone and face-to-face interviews: a comparative exploration. Int J Qual Meth. 2011;10(3):202–20.
Novick G. Is there a bias against telephone interviews in qualitative research? Res Nurs Health. 2008;31(4):391–8.
QSR International Pty Ltd., NVivo qualitative data analysis software, version 10. 2008.