Living beyond loss: a qualitative investigation of caregivers’ experiences after the death of their relatives with amyotrophic lateral sclerosis

References

• Pagnini F. Psychological wellbeing and quality of life in amyotrophic lateral sclerosis: a review. Int J Psychol. 2013;48:194–205.
   PubMed Web of Science ®Google Scholar
• Cipolletta S, Gammino GR, Francescon P, Palmieri A. Mutual support groups for family caregivers of people with amyotrophic lateral sclerosis in Italy: a pilot study. Health Soc Care Community. 2018;26:556–63.
   PubMed Web of Science ®Google Scholar
• Schischlevskij P, Cordts I, Günther R, Stolte B, Zeller D, Schröter C, et al. Informal caregiving in Amyotrophic Lateral Sclerosis (ALS): a high caregiver burden and drastic consequences on Caregivers’ Lives. 2021;
   Google Scholar
• Hogden A, Greenfield D, Nugus P, Kiernan MC. What are the roles of carers in decision-making for amyotrophic lateral sclerosis multidisciplinary care? Patient Prefer Adherence.2013;7:171–81.
   PubMed Web of Science ®Google Scholar
• Chiò A, Gauthier A, Vignola A, Calvo A, Ghiglione P, Cavallo E, et al. Caregiver time use in ALS. Neurology. 2006;67:902–4. https://n.neurology.org/content/67/5/902
   PubMed Web of Science ®Google Scholar
• Qutub K, Lacomis D, Albert SM, Feingold E. Life factors affecting depression and burden in amyotrophic lateral sclerosis caregivers. Amyotroph Lateral Scler Frontotemporal Degener.2014;15:292–7. https://pubmed.ncbi.nlm.nih.gov/24555470/
   PubMed Web of Science ®Google Scholar
• Connolly S, Galvin M, Hardiman O. End-of-life management in patients with amyotrophic lateral sclerosis. Lancet Neurol. 2015;14:435–42. http://www.thelancet.com/article/S1474442214702212/fulltext
   PubMed Web of Science ®Google Scholar
• Chiò A, Gauthier A, Calvo A, Ghiglione P, Mutani R. Caregiver burden and patients’ perception of being a burden in ALS. Neurology. 2005;64:1780–2. https://n.neurology.org/content/64/10/1780
   PubMed Web of Science ®Google Scholar
• Poppe C, Koné I, Iseli LM, Schweikert K, Elger BS, Wangmo T. Differentiating needs of informal caregivers of individuals with ALS across the caregiving course: a systematic review. Amyotroph Lateral Scler Frontotemporal Degener. 2020;21:519–41. https://pubmed.ncbi.nlm.nih.gov/32657155/
   PubMed Web of Science ®Google Scholar
• de Wit J, Bakker LA, van Groenestijn AC, van den Berg LH, Schröder CD, Visser-Meily JMA, et al. Caregiver burden in amyotrophic lateral sclerosis: a systematic review. Palliat Med. 2018;32:231–45. https://journals.sagepub.com/doi/full/10<?sch-permit JATS-0034-007?>.1177/0269216317709965
   PubMed Web of Science ®Google Scholar
• Mason TM, Tofthagen CS, Buck HG. Complicated grief: risk factors, protective factors, and interventions. J Soc Work End Life Palliat Care.2020;16:151–74. https://pubmed.ncbi.nlm.nih.gov/32233740/
   PubMed Web of Science ®Google Scholar
• Johncock W. How much care is enough? carer’s guilt and bergsonian time. Health Care Anal. 2018;26:94–107. https://pubmed.ncbi.nlm.nih.gov/27590144/
   PubMed Web of Science ®Google Scholar
• Stahl ST, Schulz R. Feeling relieved after the death of a family member with dementia: associations with postbereavement adjustment. Am J Geriatr Psychiatry. 2019;27:408–16. https://pubmed.ncbi.nlm.nih.gov/30503704/
   PubMed Web of Science ®Google Scholar
• American Psychiatric Association. 2022. Diagnostic and statistical manual of mental disorders (5th ed., text. rev.). doi:10.1176/appi.books.9780890425787.
   Google Scholar
• Shear MK, Ghesquiere A, Glickman K. Bereavement and Complicated Grief. Curr Psychiatry Rep. 2013 Nov;15(11):406. doi: 10.1007/s11920-013-0406-z.
   Google Scholar
• Hebert RS, Prigerson HG, Schulz R, Arnold RM. Preparing caregivers for the death of a loved one: a theoretical framework and suggestions for future research. J Palliat Med. 2006;9:1164–71. https://pubmed.ncbi.nlm.nih.gov/17040154/
   PubMed Web of Science ®Google Scholar
• Martin J, Turnbull J. Lasting impact in families after death from ALS. J Martin and J Turnbull. 2009;2:181–7. https://www.tandfonline.com/doi/abs/10<?sch-permit JATS-0034-007?>.1080/14660820152882188
   Google Scholar
• Psychologist ST-TH. 2021 undefined. Transformation through loss and grief: a study of personal transformation following bereavement. psycnet.apa.org; [cited 2023 Jun 26]; Available from: https://psycnet.apa.org/record/2020-20322-001.
   Google Scholar
• Burke T, Hardiman O, Pinto-Grau M, Lonergan K, Heverin M, Tobin K, et al. Longitudinal predictors of caregiver burden in amyotrophic lateral sclerosis: a population-based cohort of patient-caregiver dyads. J Neurol. 2018;265:793–808. https://pubmed.ncbi.nlm.nih.gov/29396678/
   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
• Galvin M, Gavin T, Mays I, Heverin M, Hardiman O. Individual quality of life in spousal ALS patient-caregiver dyads. Health Qual Life Outcomes. 2020;18:371. https://pubmed.ncbi.nlm.nih.gov/33225955/
   PubMed Web of Science ®Google Scholar
• Pinto C, Geraghty AWA, McLoughlin C, Pagnini F, Yardley L, Dennison L. Experiences of psychological interventions in neurodegenerative diseases: a systematic review and thematic synthesis; [cited 2023 Jun 27]; Available from: https://www.tandfonline.com/doi/abs/10<?sch-permit JATS-0034-007?>.1080/17437199.2022.2073901
   Google Scholar
• O’Brien BC, Harris IB, Beckman TJ, Reed DA, Cook DA. Standards for reporting qualitative research: a synthesis of recommendations. Acad Med. 2014;89:1245–51. https://pubmed.ncbi.nlm.nih.gov/24979285/
   PubMed Web of Science ®Google Scholar
• Pedersen ML, Handberg C, Dreyer P. Mental health reported in adult invasive home mechanical ventilation through a tracheostomy: a scoping review. Int J Nurs Stud Adv. 2022;4:100110.
   Google Scholar
• MacDougall C, Fudge E. Planning and recruiting the sample for focus groups and in-depth interviews. Qual Health Res. 2001;11:117–26.
   PubMed Web of Science ®Google Scholar
• Smith J, Jarman M, methods MOT and, 1999 undefined. Doing interpretative phenomenological analysis. torrossa.com; [cited 2023 Jan 27]. Available from: https://www.torrossa.com/gs/resourceProxy?an=4913037&publisher=FZ7200#page=229.
   Google Scholar
• Lorenz Laura SLS. Visual metaphors of living with brain injury: exploring and communicating lived experience with an invisible injury. Vis Stud. 2010;25:210–23.
   Web of Science ®Google Scholar
• Şahin M, Aybek E. Jamovi: an easy to use statistical software for the social scientists. Int J Assess Tools Educ. 2020;6:670–92.
   Web of Science ®Google Scholar
• Smith JA, Flowers P, Larkin M. Interpretative phenomenological analysis: theory method and research. Interpret Phenomenol Anal 2021;2021:1–100:
   Google Scholar
• Tindall L. J.A. Smith, P. Flower and M. Larkin (2009), interpretative phenomenological analysis: theory, method and research. Qual Res Psychol. 2009;6:346–7.
   Google Scholar
• Engward H, Practice SG-R. Lodgers in the house: living with the data in interpretive phenomenological analysis research. Taylor Fr Engward, S GoldspinkReflective Pract 2020• Taylor Fr 2020;21:41–53. https://www.tandfonline.com/doi/abs/10<?sch-permit JATS-0034-007?>.1080/14623943.2019.1708305?casa_token=7JpPQ1pM12AAAAAA:oxyn29ireWrpx0IH6yhqwBr90dyDQFK55tYuf10KVGw6MmA5WrJFHEJfcLY_SYbbS_icu-L94WNW
   Google Scholar
• Kramer BJ. Gain in the caregiving experience: Where are we? What next? Gerontologist. 1997;37:218–32.
   PubMed Web of Science ®Google Scholar
• Bruletti G, Comini L, Scalvini S, Morini R, Luisa A, Paneroni M, et al. A two-year longitudinal study on strain and needs in caregivers of advanced ALS patients. Amyotroph Lateral Scler Frontotemporal Degener. 2015;16:187–95. https://www.tandfonline.com/doi/abs/10<?sch-permit JATS-0034-007?>.3109/21678421.2014.974616
   Google Scholar
• Kim C. 2014 undefined. Ventilator use, respiratory problems, and caregiver well-being in Korean patients with amyotrophic lateral sclerosis receiving home-based care. journals.lww.com. 2014; [cited 2023 Aug 22]; Available from: https://journals.lww.com/jnnonline/Fulltext/2014/10000/Ventilator_Use,_Respiratory_Problems,_and.12.aspx.
   Google Scholar
• Kaub-Wittemer D, Steinbüchel N von, … MW-J of pain and, 2003 undefined. Quality of life and psychosocial issues in ventilated patients with amyotrophic lateral sclerosis and their caregivers. Elsevier; [cited 2023 Aug 22]. Available from: https://www.sciencedirect.com/science/article/pii/S0885392403003233.
   Google Scholar
• Vignola A, Guzzo A, Calvo A, Moglia C, Pessia A, Cavallo E, al. Anxiety undermines quality of life in ALS patients and caregivers S GiaconeEuropean. Eur J Neurol. 2008;15:1231–6. https://onlinelibrary.wiley.com/doi/abs/10<?sch-permit JATS-0034-007?>.1111/j.1468-1331.2008.02303.x?casa_token=Kqd_sl7oYQEAAAAA:RvfpnkSvHpfrqn3R0ZcIlHUqRrjRfSKoHWCf0P2_-NBpjRC-etAUpg4mCtxWVnjIqIr5gfF1ZfXhtA
   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. https://n.neurology.org/content/68/12/923
   PubMed Web of Science ®Google Scholar
• Grimm R. The health benefits of volunteering n n n a review of recent research. 1998; [cited 2023 Feb 7]; Available from: www.nationalservice.gov.
   Google Scholar
• Kaye J, Robinson KM. Spirituality among caregivers. Image J Nurs Sch. 1994;26:218–21.
   PubMedGoogle Scholar
• Cazzolli PA. The perspective of family and caregivers. vent support chronic respir fail. Can Respir J. 2008;2008:489–500. https://www.taylorfrancis.com/chapters/edit/10<?sch-permit JATS-0034-007?>.3109/9781420020229-45/perspective-family-caregivers-pamela-cazzolli.
   Google Scholar