Parkinson’s and the couple relationship: a qualitative meta-synthesis

References

• Archbold, P. G., Stewart, B. J., Greenlick, M. R., & Harvath, T. A. (1992). The clinical assessment of mutuality and preparedness in family caregivers to frail older people. In S. G. Funk, E. M. Tornquist, M. T. Champagne, R. A. Wiese (Eds.), Key aspects of elder care: Managing falls, incontinence, and cognitive impairments (pp. 328–39). Springer.
   Google Scholar
• Archbold, P. G., Stewart, B. J., Greenlick, M. R., & Harvath, T. (1990). Mutuality and preparedness as predictors of caregiver role strain. Research in Nursing & Health, 13(6), 375–384. https://doi.org/10.1002/nur.4770130605
   PubMed Web of Science ®Google Scholar
• Atkins, S., Lewin, S., Smith, H., Engel, M., Fretheim, A., & Volmink, J. (2008). Conducting a meta-ethnography of qualitative literature: Lessons learnt. BMC Medical Research Methodology, 8(1), 21. https://doi.org/10.1186/1471-2288-8-21
   PubMed Web of Science ®Google Scholar
• Badr, H., & Acitelli, L. K. (2017). Re-thinking dyadic coping in the context of chronic illness. Current Opinion in Psychology, 13, 44–48. https://doi.org/10.1016/j.copsyc.2016.03.001
   PubMed Web of Science ®Google Scholar
• Barnett-Page, E., & Thomas, J. (2009). Methods for the synthesis of qualitative research: A critical review. BMC Medical Research Methodology, 9(1), 59–59. https://doi.org/10.1186/1471-2288-9-59
   PubMed Web of Science ®Google Scholar
• Beaudet, L., & Ducharme, F. (2013). Living with moderate-stage Parkinson disease: Intervention needs and preferences of elderly couples. The Journal of Neuroscience Nursing: Journal of the American Association of Neuroscience Nurses, 45(2), 88–95. https://doi.org/10.1097/JNN.0b013e3182828ff4
   PubMed Web of Science ®Google Scholar
• Bertschi, I. C., Meier, F., & Bodenmann, G. (2021). Disability as an Interpersonal Experience: A Systematic Review on Dyadic Challenges and Dyadic Coping When One Partner Has a Chronic Physical or Sensory Impairment. Frontiers in Psychology, 12, 624609. https://doi.org/10.3389/fpsyg.2021.624609
   PubMed Web of Science ®Google Scholar
• Birgersson, A. M. B., & Edberg, A. K. (2004). Being in the light or in the shade: Persons with Parkinson’s disease and their partners’ experience of support. International Journal of Nursing Studies, 41(6), 621–630. https://doi.org/10.1016/j.ijnurstu.2004.01.007
   PubMed Web of Science ®Google Scholar
• Chen, Y., Zhou, W., Hou, L., Zhang, X., Wang, Q., Gu, J., Zhang, R., & Yang, H. (2021). The subjective experience of family caregivers of people living with Parkinson’s disease: A meta-ethnography of qualitative literature. Aging Clinical and Experimental Research, 34(5), 959–970. https://doi.org/10.1007/s40520-021-01995-9
   PubMed Web of Science ®Google Scholar
• Constant, E., Brugallé, E., Wawrziczny, E., Sokolowski, C., Manceau, C., Flinois, B., Baille, G., Luc, D., Dujardin, K., & Antoine, P. (2021). Relationship Dynamics of Couples Facing Advanced-Stage Parkinson’s Disease: A Dyadic Interpretative Phenomenological Analysis. Frontiers in Psychology, 12, 770334. https://doi.org/10.3389/fpsyg.2021.770334
   PubMed Web of Science ®Google Scholar
• Crispino, P., Gino, M., Barbagelata, E., Ciarambino, T., Politi, C., Ambrosino, I., Ragusa, R., Marranzano, M., Biondi, A., & Vacante, M. (2020). Gender Differences and Quality of Life in Parkinson’s Disease. International Journal of Environmental Research and Public Health, 18(1), 198. https://doi.org/10.3390/ijerph18010198
   PubMed Web of Science ®Google Scholar
• Critical Appraisal Skills Programme (CASP). (2018). CASP Qualitative Checklist. http://www.casp-uk.net/checklists.
   Google Scholar
• DeMaagd, G., & Philip, A. (2015). Parkinson’s Disease and Its Management: Part 1: Disease Entity, Risk Factors, Pathophysiology, Clinical Presentation, and Diagnosis. P & T: A Peer-Reviewed Journal for Formulary Management, 40(8), 504–532.
   PubMedGoogle Scholar
• Deutsch, C. J., Robertson, N., & Miyasaki, J. M. (2021). Psychological Impact of Parkinson Disease Delusions on Spouse Caregivers: A Qualitative Study. Brain Sciences (2076–3425), 11(7), 871. https://doi.org/10.3390/brainsci11070871
   PubMed Web of Science ®Google Scholar
• Dorsey, E. R., Elbaz, A., Nichols, E., Abbasi, N., Abd-Allah, F., Abdelalim, A., Adsuar, J. C., Ansha, M. G., Brayne, C., Choi, J.-Y J., Collado-Mateo, D., Dahodwala, N., Do, H. P., Edessa, D., Endres, M., Fereshtehnejad, S.-M., Foreman, K. J., Gankpe, F. G., Gupta, R., … Murray, C. J. L. (2018). Global, regional, and national burden of Parkinson’s disease, 1990–2016: A systematic analysis for the Global Burden of Disease Study 2016. The Lancet Neurology, 17(11), 939–953. https://doi.org/10.1016/S1474-4422(18)30295-3
   PubMed Web of Science ®Google Scholar
• Duggleby, W., Holtslander, L., Kylma, J., Duncan, V., Hammond, C., & Williams, A. (2010). Metasynthesis of the hope experience of family caregivers of persons with chronic illness. Qualitative Health Research, 20(2), 148–158. https://doi.org/10.1177/1049732309358329
   PubMed Web of Science ®Google Scholar
• Fleming, V., Tolson, D., & Schartau, E. (2004). Changing perceptions of womanhood: Living with Parkinson’s disease. International Journal of Nursing Studies, 41(5), 515–524. https://doi.org/10.1016/j.ijnurstu.2003.12.004
   PubMed Web of Science ®Google Scholar
• France, E. F., Cunningham, M., Ring, N., Uny, I., Duncan, E. A. S., Jepson, R. G., Maxwell, M., Roberts, R. J., Turley, R. L., Booth, A., Britten, N., Flemming, K., Gallagher, I., Garside, R., Hannes, K., Lewin, S., Noblit, G. W., Pope, C., Thomas, J., … Noyes, J. (2019). Improving reporting of meta-ethnography: The eMERGe reporting guidance. BMC Medical Research Methodology, 19(1), 25. https://doi.org/10.1186/s12874-018-0600-0
   PubMedGoogle Scholar
• Gamarel, K. E., & Revenson, T. A. (2015). Dyadic adaptation to chronic illness: The importance of considering context in understanding couples’ resilience. In K. Skerrett & K. Fergus (Eds.), Couple resilience: Emerging perspectives (pp. 83–105). Springer Science + Business Media. https://doi.org/10.1007/978-94-017-9909-6_5
   Google Scholar
• Ghedin, S., Semi, A., Caccamo, F., Caldironi, L., Marogna, C., Piccione, F., Stabile, R., Lorio, R., & Vidotto, G. (2017). Emotionally focused couple therapy with neurodegenerative diseases: A pilot study. The American Journal of Family Therapy, 45(1), 15–26. https://doi.org/10.1080/01926187.2016.1223562
   Web of Science ®Google Scholar
• Goldsworthy, B., & Knowles, S. (2008). Caregiving for Parkinson’s disease patients: An exploration of a stress-appraisal model for quality of life and burden. The Journals of Gerontology. Series B, Psychological Sciences and Social Sciences, 63(6), P372–376. https://doi.org/10.1093/geronb/63.6.P372
   PubMed Web of Science ®Google Scholar
• Graham, C. D., Gouick, J., Krahé, C., & Gillanders, D. (2016). A systematic review of the use of acceptance and commitment therapy (ACT) in chronic disease and long-term conditions. Clinical Psychology Review, 46, 46–58. https://doi.org/10.1016/j.cpr.2016.04.009
   PubMed Web of Science ®Google Scholar
• Greenwell, K., Gray, W. K., Van Wersch, A., Van Schaik, P., & Walker, R. (2015). Predictors of the psychosocial impact of being a carer of people living with Parkinson’s disease: A systematic review. Parkinsonism & Related Disorders, 21(1), 1–11. https://doi.org/10.1016/j.parkreldis.2014.10.013
   PubMed Web of Science ®Google Scholar
• Grimes, D., Fitzpatrick, M., Gordon, J., Miyasaki, J., Fon, E. A., Schlossmacher, M., Suchowersky, O., Rajput, A., Lafontaine, A. L., Mestre, T., Appel-Cresswell, S., Kalia, S. K., Schoffer, K., Zurowski, M., Postuma, R. B., Udow, S., Fox, S., Barbeau, P., & Hutton, B. (2019). Canadian guideline for Parkinson disease. CMAJ: Canadian Medical Association Journal = Journal de L’Association Medicale Canadienne, 191(36), E989–E1004. https://doi.org/10.1503/cmaj.181504
   PubMed Web of Science ®Google Scholar
• Haahr, A., Kirkevold, M., Hall, E. O. C., & Østergaard, K. (2013). ‘Being in it together’: Living with a partner receiving deep brain stimulation for advanced Parkinson’s disease—A hermeneutic phenomenological study. Journal of Advanced Nursing, 69(2), 338–347. https://doi.org/10.1111/j.1365-2648.2012.06012.x
   PubMed Web of Science ®Google Scholar
• Haahr, A., Norlyk, A., Hall, E., Hansen, K. E., Østergaard, K., & Kirkevold, M. (2020). Sharing our story individualised and triadic nurse meetings support couples adjustment to living with deep brain stimulation for Parkinson’s disease. International Journal of Qualitative Studies on Health and Well-Being, 15(1), 1748361. https://doi.org/10.1080/17482631.2020.1748361
   PubMed Web of Science ®Google Scholar
• Habermann, B. (2000). Spousal perspective of Parkinson’s disease in middle life. Journal of Advanced Nursing, 31(6), 1409–1415. https://doi.org/10.1046/j.1365-2648.2000.01457.x
   PubMed Web of Science ®Google Scholar
• Hayes, S., & Smith, S. (2005). Get out of your mind and into your life: The new acceptance and commitment therapy. New Harbinger Publications.
   Google Scholar
• Hodgson, J. H., Garcia, K., & Tyndall, L. (2004). Parkinson’s disease and the couple relationship: A qualitative analysis. Families Systems & Health, 22(1), 101–118. https://doi.org/10.1037/1091-7527.22.1.101
   Google Scholar
• Hoehn, M. M., & Yahr, M. D. (1967). Parkinsonism: Onset, progression and mortality. Neurology, 17(5), 427–442. https://doi.org/10.1212/wnl.17.5.427
   Google Scholar
• Hosseinpanahi, M., Mirghafourvand, M., Farshbaf-Khalili, A., Esmaeilpour, K., Rezaei, M., & Malakouti, J. (2020). The effect of counseling based on acceptance and commitment therapy on mental health and quality of life among infertile couples: A randomized controlled trial. Journal of Education and Health Promotion, 9(1), 251–251. https://doi.org/10.4103/jehp.jehp_512_20
   PubMedGoogle Scholar
• Karademas, E. C. (2022). A new perspective on dyadic regulation in chronic illness: The dyadic regulation connectivity model. Health Psychology Review, 16(1), 1–21. https://doi.org/10.1080/17437199.2021.1874471
   PubMed Web of Science ®Google Scholar
• Karlstedt, M., Fereshtehnejad, S. M., Aarsland, D., & Lökk, J. (2017). Determinants of dyadic relationship and its psychosocial impact in patients with Parkinson’s disease and their spouses. Parkinson’s Disease, 2017, 4697052–4697059. https://doi.org/10.1155/2017/4697052
   PubMed Web of Science ®Google Scholar
• Karlstedt, M., Fereshtehnejad, S. M., Aarsland, D., & Lökk, J. (2020). Mediating effect of mutuality on caregiver burden in Parkinson’s disease partners. Aging & Mental Health, 24(9), 1421–1428. https://doi.org/10.1080/13607863.2019.1619165
   PubMed Web of Science ®Google Scholar
• Kobylecki, C. (2020). Update on the diagnosis and management of Parkinson’s disease. Clinical Medicine (London, England), 20(4), 393–398. https://doi.org/10.7861/clinmed.2020-0220
   PubMed Web of Science ®Google Scholar
• Lawson, R. A., Collerton, D., Taylor, J.-P., Burn, D. J., & Brittain, K. R. (2018). Coping with cognitive impairment in people with Parkinson’s disease and their carers: A qualitative study. Parkinson’s Disease, 2018, 1362053. https://doi.org/10.1155/2018/1362053
   PubMed Web of Science ®Google Scholar
• Mach, H., Baylor, C., Hunting Pompon, R., & Yorkston, K. (2019). Third-party disability in family members of people with communication disorders associated with Parkinson’s disease. Topics in Language Disorders, 39(1), 71–88. https://doi.org/10.1097/TLD.0000000000000172
   Web of Science ®Google Scholar
• Martin, S. C. (2016). Relational issues within couples coping with Parkinson’s disease: Implications and ideas for family-focused care. Journal of Family Nursing, 22(2), 224–251. https://doi.org/10.1177/1074840716640605
   PubMed Web of Science ®Google Scholar
• Martire, L. M., & Helgeson, V. S. (2017). Close relationships and the management of chronic illness: Associations and interventions. The American Psychologist, 72(6), 601–612. https://doi.org/10.1037/amp0000066
   PubMed Web of Science ®Google Scholar
• McKeown, E., Saleem, T., Magee, C., & Haddad, M. (2020). The experiences of carers looking after people with Parkinson’s disease who exhibit impulsive and compulsive behaviours: An exploratory qualitative study. Journal of Clinical Nursing, 29(23–24), 4623–4632. https://doi.org/10.1111/jocn.15499
   PubMed Web of Science ®Google Scholar
• Mosley, P. E., Moodie, R., & Dissanayaka, N. (2017). Caregiver burden in Parkinson disease: A critical review of recent literature. Journal of Geriatric Psychiatry and Neurology, 30(5), 235–252. https://doi.org/10.1177/0891988717720302
   PubMed Web of Science ®Google Scholar
• National Institute for Health and Care Excellence (NICE). (2017). Parkinson’s disease in adults (NG71). Nice.
   Google Scholar
• Noblit, G. W., & Hare, R. D. (1988). Meta-ethnography synthesising qualitative studies. SAGE.
   Google Scholar
• Page, M. J., McKenzie, J. E., Bossuyt, P. M., Boutron, I., Hoffmann, T. C., Mulrow, C. D., Shamseer, L., Tetzlaff, J. M., Akl, E. A., Brennan, S. E., Chou, R., Glanville, J., Grimshaw, J. M., Hróbjartsson, A., Lalu, M. M., Li, T., Loder, E. W., Mayo-Wilson, E., McDonald, S., … Moher, D. (2021). The PRISMA 2020 statement: An updated guideline for reporting systematic reviews. BMJ (Clinical Research ed.), 372, n71. https://doi.org/10.1136/bmj.n71
   PubMed Web of Science ®Google Scholar
• Pakenham, K. (2010). Benefit-finding and sense-making in chronic illness. In The Oxford Handbook of Stress, Health, and Coping. Oxford University Press. https://doi.org/10.1093/oxfordhb/9780195375343.013.0013
   Google Scholar
• Perepezko, K., Hinkle, J. T., Shepard, M. D., Fischer, N., Broen, M., Leentjens, A., Gallo, J. J., & Pontone, G. M. (2019). Social role functioning in Parkinson’s disease: A mixed-methods systematic review. International Journal of Geriatric Psychiatry, 34(8), 1128–1138. https://doi.org/10.1002/gps.5137
   PubMed Web of Science ®Google Scholar
• Potter, K. J., Golijana-Moghaddam, N., Evangelou, N., Mhizha-Murira, J. R., & Das Nair, R. (2021). Self-help acceptance and commitment therapy for carers of people with multiple sclerosis: A feasibility randomised controlled trial. Journal of Clinical Psychology in Medical Settings, 28(2), 279–294. https://doi.org/10.1007/s10880-020-09711-x
   PubMed Web of Science ®Google Scholar
• Pringsheim, T., Jette, N., Frolkis, A., & Steeves, T. D. (2014). The prevalence of Parkinson’s disease: A systematic review and meta-analysis. Movement Disorders: Official Journal of the Movement Disorder Society, 29(13), 1583–1590. https://doi.org/10.1002/mds.25945
   PubMed Web of Science ®Google Scholar
• Roger, K. S., & Medved, M. (2010). Living with Parkinson’s disease—Managing identity together. International Journal of Qualitative Studies on Health and Well-Being, 5(2), 5129. https://doi.org/10.3402/qhw.v5i2.5129
   Web of Science ®Google Scholar
• Rohrbaugh, M. (2021). Constructing we-ness: A communal coping intervention for couples facing chronic illness. Family Process, 60(1), 17–31. https://doi.org/10.1111/famp.12595
   PubMed Web of Science ®Google Scholar
• Rosland, A. M., Heisler, M., & Piette, J. D. (2012). The impact of family behaviors and communication patterns on chronic illness outcomes: A systematic review. Journal of Behavioral Medicine, 35(2), 221–239. https://doi.org/10.1007/s10865-011-9354-4
   PubMed Web of Science ®Google Scholar
• Rutten, S., van den Heuvel, O. A., de Kruif, A. J. T. C. M., Schoonmade, L. J., Schumacher, E. I. M., Vermunt, K., Hagen, R., van Wegen, E. E. H., & Rutten, K. (2021). The subjective experience of living with Parkinson’s disease: A meta-ethnography of qualitative literature. Journal of Parkinson’s Disease, 11(1), 139–151. https://doi.org/10.3233/JPD-202299
   PubMedGoogle Scholar
• Sánchez-Guzmán, M. A., Paz-Rodríguez, F., Espinola Nadurille, M., & Trujillo-De Los Santos, Z. (2022). Intimate partner violence in persons with Parkinson’s disease. Journal of Interpersonal Violence, 37(3–4), 1732–1748. https://doi.org/10.1177/0886260520920862
   PubMed Web of Science ®Google Scholar
• Sattar, R., Lawton, R., Panagioti, M., & Johnson, J. (2021). Meta-ethnography in healthcare research: A guide to using a meta-ethnographic approach for literature synthesis. BMC Health Services Research, 21(1), 50. https://doi.org/10.1186/s12913-020-06049-w
   PubMed Web of Science ®Google Scholar
• Smith, L. J., & Shaw, R. L. (2017). Learning to live with Parkinson’s disease in the family unit: An interpretative phenomenological analysis of well-being. Medicine, Health Care, and Philosophy, 20(1), 13–21. https://doi.org/10.1007/s11019-016-9716-3
   PubMed Web of Science ®Google Scholar
• Soundy, A., Stubbs, B., & Roskell, C. (2014). The experience of Parkinson’s disease: A systematic review and meta-ethnography. ScientificWorldJournal, 2014, 613592. https://doi.org/10.1155/2014/613592
   PubMedGoogle Scholar
• Spencer, C., & Haub, M. (2018). Family therapy with couples and individuals with Parkinson’s Disease. Contemporary Family Therapy, 40(4), 299–308. https://doi.org/10.1007/s10591-018-9458-x
   Web of Science ®Google Scholar
• Tanji, H., Anderson, K. E., Gruber-Baldini, A. L., Fishman, P. S., Reich, S. G., Weiner, W. J., & Shulman, L. M. (2008). Mutuality of the marital relationship in Parkinson’s disease. Movement Disorders: Official Journal of the Movement Disorder Society, 23(13), 1843–1849. https://doi.org/10.1002/mds.22089
   PubMed Web of Science ®Google Scholar
• Theed, R., Eccles, F., & Simpson, J. (2017). Experiences of caring for a family member with Parkinson’s disease: A meta-synthesis. Aging & Mental Health, 21(10), 1007–1016. https://doi.org/10.1080/13607863.2016.1247414
   PubMed Web of Science ®Google Scholar
• Thomson, C. J., Segrave, R. A., Racine, E., Warren, N., Thyagarajan, D., & Carter, A. (2020). ‘He’s back so i’m not alone’: The impact of deep brain stimulation on personality, self, and relationships in Parkinson’s disease. Qualitative Health Research, 30(14), 2217–2233. https://doi.org/10.1177/1049732320951144
   PubMed Web of Science ®Google Scholar
• Vatter, S., McDonald, K. R., Stanmore, E., Clare, L., McCormick, S. A., & Leroi, I. (2018). A qualitative study of female caregiving spouses’ experiences of intimate relationships as cognition declines in Parkinson’s disease. Age and Ageing, 47(4), 604–610. https://doi.org/10.1093/ageing/afy049
   PubMed Web of Science ®Google Scholar
• Vescovelli, F., Sarti, D., & Ruini, C. (2018). Subjective and psychological well-being in Parkinson’s disease: A systematic review. Acta Neurologica Scandinavica, 138(1), 12–23. https://doi.org/10.1111/ane.12946
   PubMed Web of Science ®Google Scholar
• Vincent, C. (2019). Illness, couples and couple psychotherapy. British Journal of Psychotherapy, 35(4), 628–641. https://doi.org/10.1111/bjp.12501
   Web of Science ®Google Scholar
• Weintraub, D., Koester, J., Potenza, M. N., Siderowf, A. D., Stacy, M., Voon, V., Whetteckey, J., Wunderlich, G. R., & Lang, A. E. (2010). Impulse control disorders in Parkinson disease: A cross-sectional study of 3090 patients. Archives of Neurology, 67(5), 589–595. https://doi.org/10.1001/archneurol.2010.65
   PubMed Web of Science ®Google Scholar
• Weitkamp, K., Feger, F., Landolt, S. A., Roth, M., & Bodenmann, G. (2021). Dyadic coping in couples facing chronic physical illness: A systematic review. Frontiers in Psychology, 12, 722740. https://doi.org/10.3389/fpsyg.2021.722740
   PubMed Web of Science ®Google Scholar
• Whitehead, B. (2010). The psychosocial impact of communication changes in people with Parkinson’s disease. British Journal of Neuroscience Nursing, 6(1), 30–36. https://doi.org/10.12968/bjnn.2010.6.1.46056
   Google Scholar
• Wielinski, C. L., Varpness, S. C., Erickson-Davis, C., Paraschos, A. J., & Parashos, S. A. (2010). Sexual and relationship satisfaction among persons with young-onset Parkinson’s disease. The Journal of Sexual Medicine, 7(4 Pt 1), 1438–1444. https://doi.org/10.1111/j.1743-6109.2009.01408.x
   PubMed Web of Science ®Google Scholar
• Williamson, C., Simpson, J., & Murray, C. D. (2008). Caregivers’ experiences of caring for a husband with Parkinson’s disease and psychotic symptoms. Social Science & Medicine (1982), 67(4), 583–589. https://doi.org/10.1016/j.socscimed.2008.04.014
   PubMed Web of Science ®Google Scholar
• Wooten, G. F., Currie, L. J., Bovbjerg, V. E., Lee, J. K., & Patrie, J. (2004). Are men at greater risk for Parkinson’s disease than women? Journal of Neurology, Neurosurgery, and Psychiatry, 75(4), 637–639. https://doi.org/10.1136/jnnp.2003.020982
   PubMed Web of Science ®Google Scholar
• Wootton, A., Starkey, N. J., & Barber, C. C. (2019). Unmoving and unmoved: Experiences and consequences of impaired non-verbal expressivity in Parkinson’s patients and their spouses. Disability and Rehabilitation, 41(21), 2516–2527. https://doi.org/10.1080/09638288.2018.1471166
   PubMed Web of Science ®Google Scholar
• Zarotti, N., Eccles, F. J. R., Foley, J. A., Paget, A., Gunn, S., Leroi, I., & Simpson, J. (2021). Psychological interventions for people with Parkinson’s disease in the early 2020s: Where do we stand? Psychology and Psychotherapy, 94(3), 760–797. https://doi.org/10.1111/papt.12321
   PubMed Web of Science ®Google Scholar
• Zhao, N., Yang, Y., Zhang, L., Zhang, Q., Balbuena, L., Ungvari, G. S., Zang, Y. F., & Xiang, Y. T. (2021). Quality of life in Parkinson’s disease: A systematic review and meta-analysis of comparative studies. CNS Neuroscience & Therapeutics, 27(3), 270–279. https://doi.org/10.1111/cns.13549
   PubMed Web of Science ®Google Scholar