User perspectives on a psychosocial blended support program for partners of patients with amyotrophic lateral sclerosis and progressive muscular atrophy: a qualitative study
Open accessAbstract
BACKGROUND: 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). METHODS: 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. RESULTS: 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. CONCLUSIONS: 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. TRIAL REGISTRATION: Dutch Trialregister NTR5734 , registered 28 March 2016.
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ALS and PMA caregivers may lack relevant knowledge and skills, such as communicating about the disease and death, dealing with patients' behavioral changes, dealing with their own emotions or expressing their own boundaries.
“ALS and PMA caregivers are faced with situations, yet may lack the relevant knowledge and skills, such as communicating about the disease and death, dealing with the patients’ behavioral changes, dealing with their own emotions or expressing their own boundaries [17].”
From A blended psychosocial support program for partners of patients with amyotrophic lateral sclerosis and progressive muscular atrophy: Protocol of a randomized controlled trial (2018) · cites this paper as [17]
The Results (Mechanisms of impact; page unavailable) describe caregivers learning to set boundaries, accept difficult emotions, and discuss topics such as funeral preparations with their partners. The Background says patients’ behavioral changes increase caregiving demands, but the passages do not establish that caregivers lack knowledge or skills for dealing with those changes. (LLM, conf=0.84)
Experimental — accuracy not yet measuredDue to the many hours ALS and PMA caregivers spend on providing care, they often experience a lack of personal time, which reduces the opportunity to access traditional forms of support.
“Due to the many hours ALS and PMA caregivers spend on providing care, they often experience a lack of personal time [17], which reduces the opportunity to access traditional forms of support.”
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Cites
Using thematic analysis in psychology
Braun, V., & Clarke, V. (2006) · Qualitative Research in Psychology · doi:10.1191/1478088706qp063oa · Cited by 194,414 · cited 4× · see citing works
“Braun V, Clarke V.”
MethodInfluentialHow Many Interviews Are Enough?: An Experiment with Data Saturation and Variability
Guest, G., Bunce, A., & Johnson, L. (2006) · Field Methods · doi:10.1177/1525822x05279903 · Cited by 20,808 · cited 1× · see citing works
“Interviews were held until saturation was reached and confirmed during analysis of the last three interviews [14].”
BackgroundStandards for Reporting Qualitative Research: A Synthesis of Recommendations
O’Brien, B. C., Harris, I. B., Beckman, T. J., Reed, D. A., & Cook, D. A. (2014) · Academic Medicine · doi:10.1097/acm.0000000000000388 · Cited by 12,211 · cited 1× · see citing works
“Memo writing, the use of the checklist of Braun & Clark and the SRQR checklist further enhanced the trustworthiness [17, 18].”
MethodDeveloping and evaluating complex interventions: the new Medical Research Council guidance
Craig, P., Dieppe, P., Macintyre, S., Michie, S., Nazareth, I., & Petticrew, M. (2008) · BMJ · doi:10.1136/bmj.a1655 · Cited by 10,995 · cited 1× · see citing works
“Furthermore, insight into caregivers’ experiences with the specific components of the intervention is valuable for implementation of care for these caregivers in the future [13].”
BackgroundProcess evaluation of complex interventions: Medical Research Council guidance
Moore, G. F., Audrey, S., Barker, M., Bond, L., Bonell, C., Hardeman, W., Moore, L., O'Cathain, A., Tinati, T., Wight, D., et al. (2015) · BMJ · doi:10.1136/bmj.h1258 · Cited by 6,204 · see citing works
(1999) · Cited by 5,934 · see citing works
Cedarbaum, J. M., Stambler, N., Malta, E., Fuller, C., Hilt, D., Thurmond, B., & Nakanishi, A. (1999) · Journal of the Neurological Sciences · doi:10.1016/s0022-510x(99)00210-5 · Cited by 3,307 · cited 3× · see citing works
“Demographic characteristics of the caregivers and disease-related characteristics of the patients were gathered in the context of the RCT. Insight into the severity of the patient’s disabilities was collected via the Amyotrophic Lateral Sclerosis Functional Rating Scale-Revised (ALSFRS-R) [15].”
MethodInfluentialCreswell, J. D. (2017) · Annual Review of Psychology · doi:10.1146/annurev-psych-042716-051139 · Cited by 1,702 · cited 2× · see citing works
“Yet, it is not uncommon for participants to report unpleasant reactions, such as agitation, discomfort, or confusion during mindfulness interventions [34].”
BackgroundDeveloping and evaluating complex interventions: the new Medical Research Council guidance
Craig, P., Dieppe, P., Macintyre, S., Michie, S., Nazareth, I., & Petticrew, M. (2013) · International Journal of Nursing Studies · doi:10.1016/j.ijnurstu.2012.09.010 · Cited by 1,658 · see citing works
Is there a bias against telephone interviews in qualitative research?
Novick, G. (2008) · Research in Nursing & Health · doi:10.1002/nur.20259 · Cited by 1,353 · cited 1× · see citing works
“However, telephonic interviews may allow respondents to disclose sensitive information more freely [43].”
BackgroundSocial comparison activity under threat: Downward evaluation and upward contacts.
Taylor, S. E., & Lobel, M. (1989) · Psychological Review · doi:10.1037/0033-295x.96.4.569 · Cited by 1,296 · cited 1× · see citing works
“Although peer support can have advantages, having contact with others who are coping well can provide hope and generate information which positively impacts upon one’s own problem solving skills [36, 37].”
BackgroundProcess evaluation in randomised controlled trials of complex interventions
Oakley, A., Strange, V., Bonell, C., Allen, E., & Stephenson, J. (2006) · BMJ · doi:10.1136/bmj.332.7538.413 · Cited by 1,247 · see citing works
How Effective Are Interventions With Caregivers? An Updated Meta-Analysis
Sörensen, S., Pinquart, M., & Duberstein, P. R. (2002) · The Gerontologist · doi:10.1093/geront/42.3.356 · Cited by 1,129 · cited 1× · see citing works
“This is in line with the current focus in the field of caregiver interventions; targeting interventions to specific caregiving groups and subsequently tailoring those to individual caregiver’s needs [40].”
BackgroundNorcross, J. C., Krebs, P. M., & Prochaska, J. O. (2011) · Journal of Clinical Psychology · doi:10.1002/jclp.20758 · Cited by 1,065 · see citing works
A Conceptual Framework for Adaptive Preventive Interventions
Collins, L. M., Murphy, S. A., & Bierman, K. L. (2004) · Prevention Science · doi:10.1023/b:prev.0000037641.26017.00 · Cited by 608 · cited 1× · see citing works
“Offering tailored interventions according to the needs of the recipient reduces negative effects of interventions, decreases waste of time and effort of both recipient and professional, and may increase the compliance with the intervention [41].”
BackgroundIntimacy and relationship processes in couples' psychosocial adaptation to cancer
Manne, S. L., & Badr, H. (2008) · Cancer · doi:10.1002/cncr.23450 · Cited by 452 · see citing works
Duration, Dominance and Depth in Telephone and Face-to-Face Interviews: A Comparative Exploration
Irvine, A. L. (2011) · International Journal of Qualitative Methods · doi:10.1177/160940691101000302 · Cited by 262 · see citing works
Manne, S. L., Ostroff, J. S., Rini, C. K., Fox, K. R., Goldstein, L. J., & Grana, G. (2004) · Journal of Family Psychology · doi:10.1037/0893-3200.18.4.589 · Cited by 259 · see citing works
A longitudinal study on quality of life and depression in ALS patient–caregiver couples
Gauthier, A., Vignola, A., Calvo, A., Cavallo, E., Moglia, C., Sellitti, L., Mutani, R., & Chiò, A. (2007) · Neurology · doi:10.1212/01.wnl.0000257093.53430.a8 · Cited by 256 · cited 1× · see citing works
“Research shows that caregivers experience high levels of distress and caregiver burden [4, 5].”
BackgroundSexual dysfunction and spousal communication in couples coping with prostate cancer
Badr, H., & Taylor, C. L. C. (2008) · Psycho-Oncology · doi:10.1002/pon.1449 · Cited by 235 · see citing works
Manne, S. L., Norton, T. R., Ostroff, J. S., Winkel, G. H., Fox, K. R., & Grana, G. (2007) · Journal of Family Psychology · doi:10.1037/0893-3200.21.3.380 · Cited by 193 · cited 1× · see citing works
“It has been demonstrated that sharing emotions and thoughts and communicating about diseaserelated topics with your partner leads to increased feelings of intimacy [22–24], while hiding worries and dismissing negative emotions are associated with more perceived distress [25, 26].”
BackgroundAoun, S. M., Bentley, B., Funk, L., Toye, C., Grande, G., & Stajduhar, K. J. (2013) · Palliative Medicine · doi:10.1177/0269216312455729 · Cited by 152 · cited 1× · see citing works
“Although caregivers express a need for psychosocial support [6] supportive evidence based interventions for these caregivers are lacking [7].”
BackgroundA Tailored Web-Based Psycho-Educational Intervention for Cancer Patients and Their Family Caregivers
Northouse, L., Schafenacker, A. M., Barr, K. L. C., Katapodi, M., Yoon, H., Brittain, K., Song, L.-X., Ronis, D., & An, L. C. (2014) · Cancer Nursing · doi:10.1097/ncc.0000000000000159 · Cited by 140 · see citing works
Aoun, S. M., Connors, S. L., Priddis, L., Breen, L. J., & Colyer, S. (2012) · Palliative Medicine · doi:10.1177/0269216311416036 · Cited by 119 · cited 1× · see citing works
“the social network is mostly focused on the patient [27].”
BackgroundThe ALS-FTD-Q: A new screening tool for behavioral disturbances in ALS
Raaphorst, J., Beeldman, E., Schmand, B., Berkhout, J., Linssen, W. H. J. P., van den Berg, L. H., Pijnenburg, Y. A., Grupstra, H. F., Weikamp, J. G., Schelhaas, H. J., et al. (2012) · Neurology · doi:10.1212/wnl.0b013e31826c1aa1 · Cited by 111 · see citing works
Locock, L., & Brown, J. (2010) · Social Science & Medicine · doi:10.1016/j.socscimed.2010.06.043 · Cited by 105 · cited 2× · see citing works
“Although peer support can have advantages, having contact with others who are coping well can provide hope and generate information which positively impacts upon one’s own problem solving skills [36, 37].”
BackgroundResultCollins, R. N., & Kishita, N. (2019) · The Gerontologist · doi:10.1093/geront/gny024 · Cited by 101 · cited 1× · see citing works
“Although mindfulness based interventions has been shown to decrease feelings of depression and caregiver burden in caregivers [32, 33], most caregivers in our study did not perceive the mindfulness exercises as helpful.”
BackgroundCaregiver burden in amyotrophic lateral sclerosis: a cross-sectional investigation of predictors
Burke, T., Elamin, M., Galvin, M., Hardiman, O. M., & Pender, N. P. (2015) · Journal of Neurology · doi:10.1007/s00415-015-7746-z · Cited by 98 · cited 1× · see citing works
“Research shows that caregivers experience high levels of distress and caregiver burden [4, 5].”
BackgroundO'Brien, M. R., Whitehead, B. A., Jack, B., & Mitchell, J. D. (2011) · Disability and Rehabilitation · doi:10.3109/09638288.2011.605511 · Cited by 81 · cited 1× · see citing works
“Although caregivers express a need for psychosocial support [6] supportive evidence based interventions for these caregivers are lacking [7].”
BackgroundBoots, L. M., de Vugt, M. E., Withagen, H. E., Kempen, G. I., & Verhey, F. R. (2016) · JMIR Research Protocols · doi:10.2196/resprot.5142 · Cited by 79 · see citing works
Glynn, S. M., Randolph, E. T., Garrick, T., & Lui, A. (2010) · Psychiatric Rehabilitation Journal · doi:10.2975/33.4.2010.278.287 · Cited by 73 · see citing works
Galvin, M., Carney, S., Corr, B., Mays, I., Pender, N. P., & Hardiman, O. M. (2018) · BMJ Open · doi:10.1136/bmjopen-2017-018721 · Cited by 66 · cited 1× · see citing works
“[38] and they seem to be reluctant to seek support for themselves [39].”
BackgroundHinnen, C., Hagedoorn, M., Sanderman, R., & Ranchor, A. V. (2007) · Psycho-Oncology · doi:10.1002/pon.1153 · Cited by 47 · cited 1× · see citing works
“It has been demonstrated that sharing emotions and thoughts and communicating about diseaserelated topics with your partner leads to increased feelings of intimacy [22–24], while hiding worries and dismissing negative emotions are associated with more perceived distress [25, 26].”
BackgroundKöhle, N., Drossaert, C. H. C., Jaran, J., Schreurs, K. M. G., Verdonck-de Leeuw, I. M., & Bohlmeijer, E. T. (2017) · BMC Public Health · doi:10.1186/s12889-017-4121-2 · Cited by 39 · cited 1× · see citing works
“These results are in line with the results in previous studies, which concluded that the fear of negative prospects can prevent participants from seeking peer contact [35, 36].”
ResultKöhle, N., Drossaert, C. H., Schreurs, K. M., Hagedoorn, M., Verdonck-de Leeuw, I. M., & Bohlmeijer, E. T. (2015) · BMC Public Health · doi:10.1186/s12889-015-1656-y · Cited by 38 · cited 1× · see citing works
“The content of the support program is originated from an existing intervention for partners of people with cancer [10] and adapted to the needs of caregivers of patients with ALS and PMA.”
BackgroundRelatives of patients with amyotrophic lateral sclerosis: Their experience of care and support
Larsson, B., Fröjd, C., Nordin, K., & Nygren, I. (2015) · Palliative & Supportive Care · doi:10.1017/s1478951515000188 · Cited by 35 · cited 1× · see citing works
“[38] and they seem to be reluctant to seek support for themselves [39].”
BackgroundHearn, J. H., Cotter, I., & Finlay, K. A. (2018) · Archives of Physical Medicine and Rehabilitation · doi:10.1016/j.apmr.2018.08.182 · Cited by 27 · cited 1× · see citing works
“Although mindfulness based interventions has been shown to decrease feelings of depression and caregiver burden in caregivers [32, 33], most caregivers in our study did not perceive the mindfulness exercises as helpful.”
BackgroundAnderson, N. H., Gluyas, C., Mathers, S., Hudson, P., & Ugalde, A. (2016) · BMJ Supportive & Palliative Care · doi:10.1136/bmjspcare-2015-001057 · Cited by 26 · see citing works
What's Stressful About Caring?<sup>1</sup>
Orbell, S., & Gillies, B. (1993) · Journal of Applied Social Psychology · doi:10.1111/j.1559-1816.1993.tb01087.x · Cited by 25 · see citing works
Extending the demand–control model to informal caregiving
Molloy, G. J., Johnston, D. W., Johnston, M., Morrison, V. L., Pollard, B., Bonetti, D. L., Joice, S. A., & MacWalter, R. (2005) · Journal of Psychosomatic Research · doi:10.1016/j.jpsychores.2004.08.009 · Cited by 22 · cited 1× · see citing works
“Caregivers who experience increasing demand but do not feel in control over the caregiving situation are more likely to experience psychological distress according to the demand and control model [2, 3].”
BackgroundThe experience of informal caregivers of patients with motor neurone disease: A thematic synthesis
Holkham, L., & Soundy, A. (2017) · Palliative & Supportive Care · doi:10.1017/s1478951517000852 · Cited by 21 · cited 1× · see citing works
“They are faced with physical deterioration and possible cognitive and behavioral changes in patients, which results in increasing demands on the caregiver [1].”
BackgroundGluyas, C., Mathers, S., Anderson, N. H., & Ugalde, A. (2016) · Palliative & Supportive Care · doi:10.1017/s1478951516000912 · Cited by 17 · cited 2× · see citing works
“Since these caregivers are often occupied with care tasks which makes it complicated to receive face-to-face support, using online support seems to be a suitable way to provide support and to reach out to the caregivers who are in need of care [31].”
BackgroundSauer, S. E., & Baer, R. A. (2009) · Journal of Psychopathology and Behavioral Assessment · doi:10.1007/s10862-009-9127-3 · Cited by 13 · cited 1× · see citing works
“Furthermore, previous research has shown that accepting negative emotions and thoughts has positive effects on the wellbeing of individuals [21].”
Backgroundde Wit, J., Beelen, A., Drossaert, C. H. C., Kolijn, R., van den Berg, L. H., Visser-Meily, J. M. A., & Schröder, C. D. (2018) · BMC Psychology · doi:10.1186/s40359-018-0232-5 · Cited by 12 · cited 2× · see citing works
“The protocol of the RCT is described in detail elsewhere [8].”
BackgroundMethodSelf-citation
Flagged first, then by citations
Cited by
Sorted by citations
From Recognition to Remedy: The Significance of Biomarkers in Neurodegenerative Disease Pathology
Toader, C., Dobrin, N., Brehar, F.-M., Popa, C., Covache-Busuioc, R.-A., Glavan, L.-A., Costin, H. P., Bratu, B.-G., Corlatescu, A.-D., Popa, A. A., et al. (2023) · International Journal of Molecular Sciences · doi:10.3390/ijms242216119 · Cited by 61 · see citing works
“, escalating the caregiver’s responsibilities and emotional strain [134].”
BackgroundDe Wit, J., Beelen, A., Drossaert, C. H. C., Kolijn, R., Van Den Berg, L. H., SchrÖder, C. D., & Visser-Meily, J. M. A. (2020) · Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration · doi:10.1080/21678421.2020.1757114 · Cited by 46 · see citing works
Self-citationD’Alvano, G., Buonanno, D., Passaniti, C., De Stefano, M., Lavorgna, L., Tedeschi, G., Siciliano, M., & Trojsi, F. (2021) · Brain Sciences · doi:10.3390/brainsci12010049 · Cited by 32 · see citing works
“Conversely, mindfulness and peer contact intervention was not always appreciated, indicating that support intervention should be personalized, with the possibility to choose options [24].”
BackgroundAtefi, G. L., de Vugt, M. E., van Knippenberg, R. J. M., Levin, M. E., Verhey, F. R. J., & Bartels, S. L. (2023) · Clinical Psychology Review · doi:10.1016/j.cpr.2023.102341 · Cited by 30 · see citing works
Pinto, C., Geraghty, A. W. A., McLoughlin, C., Pagnini, F., Yardley, L., & Dennison, L. (2022) · Health Psychology Review · doi:10.1080/17437199.2022.2073901 · Cited by 30 · see citing works
“…thought about their disease or situation di ff erently, and considered other perspectives (Adams, 2018; Bogosian et al., 2016; Bogo-sian et al., 2021; de Wit et al., 2019; Dennison et al., 2013; Giovannetti et al., 2020; Gottberg et al., 2016; Hoppes et al., 2012; Johnston et al., 2016; Larochette…”
InfluentialOh, J., An, J., Park, K., & Park, Y. (2024) · BMC Nursing · doi:10.1186/s12912-024-01721-6 · Cited by 19 · see citing works
“…pre-post design [8, 22, 23, 25, 29, 32] and RCT [7, 9, 19, 24, 35, 38] were the most common with six studies, followed by five qualitative studies [6, 10, 18, 30, 31] and four quasi-experimental studies [5, 28, 34, 39], and three each for mixed methods [33, 36, 40] and case studies [26, 27, 37].”
BackgroundInfluentialOlesen, L. K., la Cour, K., Thorne, S. E., With, H., & Handberg, C. (2023) · Journal of Evaluation in Clinical Practice · doi:10.1111/jep.13808 · Cited by 19 · see citing works
Poppe, C. J., Schweikert, K., Krones, T., & Wangmo, T. (2022) · Palliative Care and Social Practice · doi:10.1177/26323524221077700 · Cited by 16 · see citing works
de Wit, J., Beelen, A., Drossaert, C. H. C., Kolijn, R., van den Berg, L. H., Visser-Meily, J. M. A., & Schröder, C. D. (2018) · BMC Psychology · doi:10.1186/s40359-018-0232-5 · Cited by 12 · see citing works
Self-citationA call for qualitative research in Contextual Behavioral Science
Jando, C., & Dionne, F. (2024) · Journal of Contextual Behavioral Science · doi:10.1016/j.jcbs.2024.100751 · Cited by 14 · see citing works
Lappalainen, P., Gallego, A., Keinonen, K., Lappalainen, A.-L., Tolvanen, A. J., & Lappalainen, R. I. (2023) · Child & Family Behavior Therapy · doi:10.1080/07317107.2023.2233949 · Cited by 11 · see citing works
“In line with a study by de Wit et al. (2019), this study suggests that delivering online support seems to be beneficial in supporting parents and caregivers of children with chronic illnesses.”
ResultCafarella, P. A., Effing, T., & Chur-Hansen, A. (2022) · Palliative & Supportive Care · doi:10.1017/s1478951522000311 · Cited by 6 · see citing works
İpek, L., & Gencer, G. Y. G. (2024) · Journal of Clinical Neuroscience · doi:10.1016/j.jocn.2024.06.007 · Cited by 8 · see citing works
Psychosocial Intervention for Family Caregivers of ALS Patients: A Systematic Review
Katz, L., & Gur, A. (2024) · Healthcare · doi:10.3390/healthcare12121171 · Cited by 7 · see citing works
“Four were in Italy [4,6,14,15], one was in Denmark [13], and two were in the Netherlands [3,7].”
BackgroundMethodResultInfluentialPinto, C., Geraghty, A. W. A., Pagnini, F., Yardley, L., & Dennison, L. (2023) · Frontiers in Psychiatry · doi:10.3389/fpsyt.2023.1083196 · Cited by 7 · see citing works
Mantri, S., Edison, B., Alzyoud, L., Albert, S. M., Daeschler, M., Kopil, C., Marras, C., & Chahine, L. M. (2021) · Frontiers in Neurology · doi:10.3389/fneur.2021.633645 · Cited by 7 · see citing works
Chowdhury, R. S., Bose, S., Ghosh, S., & Konar, A. (2024) · Computers in Biology and Medicine · doi:10.1016/j.compbiomed.2024.109260 · Cited by 6 · see citing works
Montiel-Troya, M., Mohamed-Mohamed, H., Pardo-Moreno, T., González-Díaz, A., Rúger-Navarrete, A., Fernández, M. D. L. M., Tovar-Gálvez, M. I., Ramos‐Rodríguez, J. J., & García‐Morales, V. (2024) · Biomedicines · doi:10.3390/biomedicines12102200 · Cited by 6 · see citing works
A meta-ethnographic synthesis of lived experience of spouse caregivers in chronic illness
Warrier, M. G., Sadasivan, A., Balasubramaian, B., Nair, M. G., Nashi, S., Vengalil, S., Nalini, A., & Thomas, P. T. (2021) · Qualitative Social Work · doi:10.1177/1473325021999706 · Cited by 5 · see citing works
“It warrants the need for intensive psychotherapeutic interventions with the spousal caregivers, especially those focusing on the third-generation cognitive therapy approaches, especially Acceptance and Commitment Therapy (Davis et al., 2015; de Wit et al., 2019).”
BackgroundOlesen, L. K., la Cour, K., Nimmon, L., With, H., & Handberg, C. (2024) · Advances in Rehabilitation Science and Practice · doi:10.1177/27536351241227860 · Cited by 3 · see citing works
“11 Prior to the pre-intervention interviews, none of the participants knew the first author who conducted the interviews.”
BackgroundWarrier, M. G., Thomas, P. T., Sadasivan, A., Nashi, S., Vengalil, S., & Nalini, A. (2022) · Journal of Patient Experience · doi:10.1177/23743735221077535 · Cited by 3 · see citing works
“be supported through dignity therapy interventions (18), intensive case management (19), and support programs based on acceptance and commitment therapy framework (20).”
BackgroundThomas, P. T., Warrier, M. G., Arun, S., Bhuvaneshwari, B., Vengalil, S., Nashi, S., Preethish‐Kumar, V., Polavarapu, K., Rajaram, P., & Nalini, A. (2022) · Chronic Illness · doi:10.1177/17423953221097076 · Cited by 2 · see citing works
“There were interventions for caregivers,(28) and especially for spouses.(29) All identified interventions were based on acceptance and commitment therapy (ACT), mindfulness, and cognitive behaviour therapy (CBT).”
BackgroundPsychologisch geleitete Gruppentreffen für Angehörige von ALS-Patient*innen
Aust, E., Günther, R., Hermann, A., & Linse, K. (2023) · Fortschritte der Neurologie · Psychiatrie · doi:10.1055/a-2156-9013 · Cited by 2 · see citing works
“…den von Patient*innen selbst oft vermieden – in der Absicht, die Angehörigen nicht noch stärker zu belasten, wobei sich diese häu fig selbst entsprechende Gespräche wünschen [31] und so auch eine Verbesserung der Patientenzentrierung entsprechender Ent scheidungen erreicht werden kann [33, 34].”
BackgroundNeeds of caregivers of amyotrophic lateral disease: a pilot study on multidisciplinary intervention
de la Cuesta, D. G., Sánchez, M. C. E., Fregenal, B. H., & Marsal, J. O. C. (2021) · Revista Científica de la Sociedad de Enfermería Neurológica (English ed ) · doi:10.1016/j.sedeng.2020.09.002 · Cited by 1 · see citing works
Wolters-Zwolle, M., de Jongh, M. M. E., van Elst, M. W., Meijer, R. P., & Vervoort, S. C. J. M. (2022) · PEC Innovation · doi:10.1016/j.pecinn.2022.100042 · Cited by 2 · see citing works
“1) was based on recent qualitative studies on (digital) interventions in healthcare and expert opinions of a urologist, a clinical nurse specialist and the secretary of the Dutch Bladder and Renal Cell Carcinoma Society [44-48].”
MethodSelf-citationCafarella, P., Effing, T., & Chur‐Hansen, A. (2024) · Palliative & Supportive Care · doi:10.1017/s1478951524000877 · Cited by 1 · see citing works
“One study published quantitative and qualitative research components in separate papers (de Wit et al. 2020, 2019), and another study was described in 2 manuscripts (Aoun et al. 2015; Bentley et al. 2014).”
Duran, S., & Aydoğdu, A. (2024) · Health Education Research · doi:10.1093/her/cyae031 · Cited by 1 · see citing works
İpek, L., Gencer, G. Y. G., Kısacık, P., & Bozgeyik, S. (2025) · Journal of Nursology · doi:10.17049/jnursology.1416063 · Cited by 1 · see citing works
Heyne, S., Kuzmanova, A., Esser, P., Mehnert, A., & Metelmann, M. (2025) · PPmP - Psychotherapie · Psychosomatik · Medizinische Psychologie · doi:10.1055/a-2679-1065 · Cited by 1 · see citing works
“Besonders in der frühen, emotional belastenden Phase der Pflege wurden individuelle An - gebote gegenüber Gruppensettings bevorzugt.”
de la Cuesta, D. G., Sánchez, M. A. C. E., Fregenal, B. H., & Marsal, J. O. C. (2020) · Revista Científica de la Sociedad Española de Enfermería Neurológica · doi:10.1016/j.sedene.2020.09.001
Monteiro, G. R. S. D. S., & de Oliveira, R. C. (2024) · Revista Eletrônica Acervo Saúde · doi:10.25248/reas.e16634.2024
Oh, J., An, J., Park, K., & Park, Y. (2024) · Figshare · doi:10.6084/m9.figshare.25107917
Oh, J., An, J., Park, K., & Park, Y. (2024) · Figshare · doi:10.6084/m9.figshare.25107801
Graciá, E. A., Rueda-Extremera, M., & Cantero-García, M. (2026) · Psicooncología · doi:10.5209/psic.108432
Psychosocial interventions for caregivers of people with neuromuscular diseases: A scoping review
Assalone, F., Ortega, J., Samaniego, V. C., & Caro, I. A. (2026) · Journal of Health Psychology · doi:10.1177/13591053261449653
- Authors
- de Wit, J., Vervoort, S. C. J. M., van Eerden, E., van den Berg, L. H., Visser-Meily, J. M. A., Beelen, A., & Schröder, C. D.
- Affiliations
- University Medical Center Utrecht (NL)
- Utrecht University (NL)
- Venue
- BMC Psychology
- Published
- 2019-06-15
- Volume
- 7
- Issue
- 1
- Pages
- 35-35
- ISSN
- 2050-7283 (ISSN-L)
- PMC
- PMC6570885
- OpenAlex
- W2949108825
- Cited by
- 37
- References
- 44
- Citations by year
- 2026: 2 · 2025: 2 · 2024: 13 · 2023: 6 · 2022: 6 · 2021: 4 · 2020: 3 · 2018: 1
- FWCI
- 6.03
- Type
- journal article
- Language
- en
- Open access
- gold
- doi.org
- Locations
- BMC Psychology (publishedVersion, cc-by)
- PubMed Central (publishedVersion, cc-by)
- PubMed (publishedVersion)
- Data Archiving and Networked Services (DANS) (submittedVersion, other-oa)
- DOAJ (DOAJ: Directory of Open Access Journals) (submittedVersion, cc-by-sa)
- Utrecht University Repository (Utrecht University) (submittedVersion, other-oa)
- Funders
- Netherlands ALS Foundation (201427)
- Topics
- Health Sciences › Health Professions › Pharmacy › Nursing care and research
- Social Sciences › Psychology › Clinical Psychology › Family Caregiving in Mental Illness
- Health Sciences › Medicine › Neurology › Amyotrophic Lateral Sclerosis Research
- Keywords
- amyotrophic lateral sclerosis, progressive muscular atrophy, psychosocial support programs, acceptance and commitment therapy, mindfulness, peer support, psychoeducation, caregiver distress, perceived control, program evaluation, impact mechanism
- MeSH terms
- Psychosocial Support Systems, Adult, Aged, Aged, 80 and over, Amyotrophic Lateral Sclerosis, Female, Humans, Male, Middle Aged, Muscular Atrophy, Spinal, Caregivers, Spouses, Qualitative Research, Acceptance and Commitment Therapy
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