Experiences of next of kin to patients with amyotrophic lateral sclerosis using invasive ventilation via tracheostomy

References

• de Wit J, Bakker LA, van Groenestijn AC, et al. Caregiver burden in amyotrophic lateral sclerosis: a systematic review. Palliat Med. 2018;32(1):231–245.
   PubMed Web of Science ®Google Scholar
• Galvin M, Carney S, Corr B, et al. Needs of informal caregivers across the caregiving course in amyotrophic lateral sclerosis: a qualitative analysis. BMJ Open. 2018;8(1):e018721.
   PubMed Web of Science ®Google Scholar
• Sandstedt P, Littorin S, Crode Widsell G, et al. Caregiver experience, health-related quality of life and life satisfaction among informal caregivers to patients with amyotrophic lateral sclerosis: a cross-sectional study. J Clin Nurs. 2018;27(23–24):4321–4330.
   PubMed Web of Science ®Google Scholar
• Chio A, Gauthier A, Vignola A, et al. Caregiver time use in ALS. Neurology. 2006;67(5):902–904.
   PubMed Web of Science ®Google Scholar
• Andersen PM, Abrahams S, Borasio GD, et al. EFNS guidelines on the Clinical Management of Amyotrophic Lateral Sclerosis (MALS) – revised report of an EFNS task force. Eur J Neurol. 2012;19:360–375.
   PubMed Web of Science ®Google Scholar
• Spataro R, Bono V, Marchese S, et al. Tracheostomy mechanical ventilation in patients with amyotrophic lateral sclerosis: clinical features and survival analysis. J Neurol Sci. 2012;323(1–2):66–70.
   PubMed Web of Science ®Google Scholar
• Chio A, Calvo A, Ghiglione P, et al. Tracheostomy in amyotrophic lateral sclerosis: a 10-year population-based study in Italy. J Neurol Neurosurg Psychiatry. 2010;81(10):1141–1143.
   PubMed Web of Science ®Google Scholar
• Dreyer P, Lorenzen CK, Schou L, et al. Survival in ALS with home mechanical ventilation non-invasively and invasively: a 15-year cohort study in west Denmark. Amyotroph La Scl Fr Degener. 2014;15(1–2):62–67.
   PubMed Web of Science ®Google Scholar
• Tagami M, Kimura F, Nakajima H, et al. Tracheostomy and invasive ventilation in Japanese ALS patients: decision-making and survival analysis: 1990-2010. J Neurol Sci. 2014;344(1–2):158–164.
   PubMed Web of Science ®Google Scholar
• Kaub-Wittemer D, Steinbuchel N, Wasner M, et al. Quality of life and psychosocial issues in ventilated patients with amyotrophic lateral sclerosis and their caregivers. J Pain Symptom Manage. 2003;26(4):890–896.
   PubMed Web of Science ®Google Scholar
• Evans R, Catapano MA, Brooks D, et al. Family caregiver perspectives on caring for ventilator-assisted individuals at home. Can Respir J. 2012;19(6):373–379.
   PubMed Web of Science ®Google Scholar
• Longinetti E, Regodon Wallin A, Samuelsson K, et al. The Swedish motor neuron disease quality registry. Amyotroph La Scl Fr Degener. 2018;19(7-8):528–537.
   PubMed Web of Science ®Google Scholar
• Heritier Barras AC, Adler D, Iancu Ferfoglia R, et al. Is tracheostomy still an option in amyotrophic lateral sclerosis? Reflections of a multidisciplinary work group. Swiss Med Wkly. 2013;143:w13830.
   PubMed Web of Science ®Google Scholar
• Miller RG, Jackson CE, Kasarskis EJ, et al. Practice parameter update: The care of the patient with amyotrophic lateral sclerosis: drug, nutritional, and respiratory therapies (an evidence-based review): report of the Quality Standards Subcommittee of the American Academy of Neurology. Neurology. 2009;73(15):1218–1226.
   PubMed Web of Science ®Google Scholar
• Rabkin J, Ogino M, Goetz R, et al. Tracheostomy with invasive ventilation for ALS patients: neurologists' roles in the US and Japan. Amyotroph La Scl Fr Degener. 2013;14(2):116–123.
   PubMed Web of Science ®Google Scholar
• Lemoignan J, Ells C. Amyotrophic lateral sclerosis and assisted ventilation: how patients decide. Pall Supp Care. 2010;8(2):207–213.
   PubMed Web of Science ®Google Scholar
• Andersen PM, Kuzma-Kozakiewicz M, Keller J, et al. Therapeutic decisions in ALS patients: cross-cultural differences and clinical implications. J Neurol. 2018;265(7):1600–1606.
   PubMed Web of Science ®Google Scholar
• Rabkin J, Ogino M, Goetz R, et al. Japanese and American ALS patient preferences regarding TIV (tracheostomy with invasive ventilation): a cross-national survey. Amyotroph La Scl Fr Degener. 2014;15(3–4):185–191.
   PubMed Web of Science ®Google Scholar
• Christodoulou G, Goetz R, Ogino M, et al. Opinions of Japanese and American ALS caregivers regarding tracheostomy with invasive ventilation (TIV). Amyotroph La Scl Fr Degener. 2016;17(1–2):47–54.
   PubMed Web of Science ®Google Scholar
• Stockholms Läns Landsting. Regional vårdprogram - Kroniskt invasivt andningsstöd hos vuxna [Regional clinical guidelines - Chronic invasive ventilation in adults]. Available from: https://www.vardgivarguiden.se. 2016. Report No.: RV 2016:02.
   Google Scholar
• Baxter SK, Baird WO, Thompson S, et al. The use of non-invasive ventilation at end of life in patients with motor neurone disease: a qualitative exploration of family carer and health professional experiences. Palliat Med. 2013;27(6):516–523.
   PubMed Web of Science ®Google Scholar
• Sundling I, Ekman S, Weinberg J, et al. Patients' with ALS and caregivers' experiences of non-invasive home ventilation. Adv Physiother. 2009;11(3):114–120.
   Google Scholar
• Mustfa N, Walsh E, Bryant V, et al. The effect of noninvasive ventilation on ALS patients and their caregivers. Neurology. 2006;66(8):1211–1217.
   PubMed Web of Science ®Google Scholar
• Veronese S, Valle A, Chio A, et al. The last months of life of people with amyotrophic lateral sclerosis in mechanical invasive ventilation: a qualitative study. Amyotroph La Scl Fr Degener. 2014;15(7–8):499–504.
   PubMed Web of Science ®Google Scholar
• Akiyama MO, Kayama M, Takamura S, et al. A study of the burden of caring for patients with amyotrophic lateral sclerosis (MND) in Japan. Br J Neurosci Nurs. 2006;2(1):38–43.
   Google Scholar
• Graneheim UH, Lundman B. Qualitative content analysis in nursing research: concepts, procedures and measures to achieve trustworthiness. Nurse Educ Today. 2004;24(2):105–112.
   PubMed Web of Science ®Google Scholar
• Downe-Wamboldt B. Content analysis: method, applications, and issues. Health Care Women Int. 1992;13(3):313–321.
   PubMedGoogle Scholar
• Tsou AY, Karlawish J, McCluskey L, et al. Predictors of emergent feeding tubes and tracheostomies in amyotrophic lateral sclerosis (ALS). Amyotroph Lateral Scler. 2012;13(3):318–325.
   PubMed Web of Science ®Google Scholar
• Sancho J, Servera E, Diaz JL, et al. Home tracheotomy mechanical ventilation in patients with amyotrophic lateral sclerosis: causes, complications and 1-year survival. Thorax. 2011;66(11):948–952.
   PubMed Web of Science ®Google Scholar
• Tollefsen E, Midgren B, Bakke P, et al. Amyotrophic lateral sclerosis: gender differences in the use of mechanical ventilation. Eur J Neurol. 2010;17(11):1352–1357.
   PubMed Web of Science ®Google Scholar
• Murray L, Butow PN, White K, et al. Advance care planning in motor neuron disease: a qualitative study of caregiver perspectives. Palliat Med. 2016;30(5):471–478.
   PubMed Web of Science ®Google Scholar
• McKim DA, King J, Walker K, et al. Formal ventilation patient education for ALS predicts real-life choices. Amyotroph Lateral Scler. 2012;13(1):59–65.
   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(4):435–442.
   PubMed Web of Science ®Google Scholar
• Danzl MM, Harrison A, Hunter EG, et al. A lot of things passed me by”: Rural stroke survivors' and caregivers' experience of receiving education from health care providers. J Rural Health. 2016;32(1):13–24.
   PubMed Web of Science ®Google Scholar
• Olsson Ozanne A, Graneheim UH, Persson L, et al. Factors that facilitate and hinder the manageability of living with amyotrophic lateral sclerosis in both patients and next of kin. J Clin Nurs. 2012;21(9–10):1364–1373.
   PubMed Web of Science ®Google Scholar
• Ozanne AO, Graneheim UH, Strang S. Struggling to find meaning in life among spouses of people with ALS. Pall Supp Care. 2015;13(4):909–916.
   PubMed Web of Science ®Google Scholar
• Larsson BJ, Frojd C, Nordin K, et al. Relatives of patients with amyotrophic lateral sclerosis: Their experience of care and support. Pall Supp Care. 2015;13(6):1569–1577.
   PubMed Web of Science ®Google Scholar
• Kim CH, Kim MS. Ventilator use, respiratory problems, and caregiver well-being in korean patients with amyotrophic lateral sclerosis receiving home-based care. J Neurosci Nurs. 2014;46(5):E25–32.
   PubMed Web of Science ®Google Scholar
• Weisser FB, Bristowe K, Jackson D. Experiences of burden, needs, rewards and resilience in family caregivers of people living with Motor Neurone Disease/Amyotrophic Lateral Sclerosis: a secondary thematic analysis of qualitative interviews. Palliat Med. 2015;29(8):737–745.
   PubMed Web of Science ®Google Scholar
• Rabkin JG, Wagner GJ, Del Bene M. Resilience and distress among amyotrophic lateral sclerosis patients and caregivers. Psychosom Med. 2000;62(2):271–279.
   PubMed Web of Science ®Google Scholar