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Clinical

Who cares for the bereaved? A national survey of family caregivers of people with motor neurone disease

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Pages 12-22 | Received 20 Jul 2020, Accepted 17 Aug 2020, Published online: 10 Sep 2020

References

  • Couratier P, Corcia P, Lautrette G, Nicol M, Preux P-M, Marin B. Epidemiology of amyotrophic lateral sclerosis: a review of literature. Rev Neurol. 2016;172:37–45.
  • van Es MA, Hardiman O, Chio A, Al-Chalabi A, Pasterkamp RJ, Veldink JH, et al. Amyotrophic lateral sclerosis. The Lancet. 2017;390:2084–98.
  • 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;34:247–56.
  • 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. Palliat Med. 2013;27:437–46.
  • Mitchell LA, Hirdes J, Poss JW, Slegers-Boyd C, Caldarelli H, Martin L. Informal caregivers of clients with neurological conditions: profiles, patterns and risk factors for distress from a home care prevalence study. BMC Health Serv Res. 2015;15:350.
  • Aoun SM, Kissane DW, Cafarella PA, Rumbold B, Hogden A, Jiang L. Grief, depression, and anxiety in bereaved caregivers of people with motor neurone disease: a population-based national study. Amyotrophic Lateral Sclerosis and Frontotemporal Degeneration 2020;1–13.
  • Watermeyer TJ, Brown RG, Sidle KC, Oliver DJ, Allen C, Karlsson J, et al. Executive dysfunction predicts social cognition impairment in amyotrophic lateral sclerosis. J Neurol. 2015;262:1681–90.
  • Tremolizzo L, Pellegrini A, Susani E, Lunetta C, Woolley SC, Ferrarese C, et al. Behavioural but not cognitive impairment is a determinant of caregiver burden in amyotrophic lateral sclerosis. Eur Neurol. 2016;75:191–4.
  • Creemers H, de Morée S, Veldink JH, Nollet F, van den Berg LH, Beelen A. Factors related to caregiver strain in ALS: a longitudinal study. J Neurol Neurosurg Psychiatry. 2016;87:775–81.
  • Ray RA, Street AF. Non-finite loss and emotional labour: family caregivers’ experiences of living with motor neurone disease. J Clin Nurs. 2007;16:35–43.
  • Stroebe M, Schut H, Stroebe W. Health outcomes of bereavement. The Lancet. 2007;370:1960–73.
  • Turvey C, Stromquist A, Kelly K, Zwerling C, Merchant J. Financial loss and suicidal ideation in a rural community sample. Acta Psychiatr Scand. 2002;106:373–80.
  • Breen LJ, O’Connor M. Family and social networks after bereavement: experiences of support, change and isolation. J Family Ther. 2011;33:98–120.
  • Prigerson HG, Horowitz MJ, Jacobs SC, Parkes CM, Aslan M, Goodkin K, et al. Prolonged grief disorder: psychometric validation of criteria proposed for DSM-V and ICD-11. PLoS Med. 2009;6:e1000121.
  • 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;26:842–50.
  • Lundorff M, Holmgren H, Zachariae R, Farver-Vestergaard I, O’Connor M. Prevalence of prolonged grief disorder in adult bereavement: a systematic review and meta-analysis. J Affect Disord. 2017;212:138–49.
  • Burke LA, Neimeyer RA. 11 Prospective risk factors for complicated grief. New York, NY: Routledge; 2013.
  • Aoun SM, Breen LJ, Howting DA, Rumbold B, McNamara B, Hegney D. Who needs bereavement support? A population based survey of bereavement risk and support need. PloS One. 2015;10:e0121101.
  • Aoun SM, Breen LJ, White I, Rumbold B, Kellehear A. What sources of bereavement support are perceived helpful by bereaved people and why? Empirical evidence for the compassionate communities approach. Palliat Med. 2018;32:1378–88.
  • Breen LJ, Aoun SM, O’Connor M, Rumbold B. Bridging the gaps in palliative care bereavement support: an international perspective. Death Stud. 2014;38:54–61.
  • Aoun SM, Breen LJ, Rumbold B, Christian KM, Same A, Abel J. Matching response to need: what makes social networks fit for providing bereavement support? PloS One. 2019;14:e0213367.
  • Kellehear A. Compassionate communities: end-of-life care as everyone’s responsibility. QJM. 2013;106:1071–5.
  • Logan EL, Thornton JA, Kane RT, Breen LJ. Social support following bereavement: the role of beliefs, expectations, and support intentions. Death Stud. 2018;42:471–82.
  • Harris PA, Taylor R, Thielke R, Payne J, Gonzalez N, Conde JG. Research electronic data capture (REDCap)-a metadata-driven methodology and workflow process for providing translational research informatics support. J Biomed Inform. 2009;42:377–81.
  • IBM Corp. Released 2016. IBM SPSS Statistics for Windows, Version 24.0. Armonk, NY: IBM Corp.
  • Kuo S-C, Chou W-C, Chen J-S, Chang W-C, Chiang M-C, Hou M-M, et al. Longitudinal changes in and modifiable predictors of the prevalence of severe depressive symptoms for family caregivers of terminally ill cancer patients over the first two years of bereavement. J Palliat Med. 2017;20:15–22.
  • Ling S-F, Chen M-L, Li C-Y, Chang W-C, Shen WC, Tang ST, editors. Trajectory and influencing factors of depressive symptoms in family caregivers before and after the death of terminally ill patients with cancer. Oncol Nurs Forum; 2013. Northern Taiwan.
  • Burns E, Prigerson HG, Quinn SJ, Abernethy AP, Currow DC. Moving on: factors associated with caregivers’ bereavement adjustment using a random population-based face-to-face survey. Palliat Med. 2018;32:257–67.
  • Ghesquiere AR, Patel SR, Kaplan DB, Bruce ML. Primary care providers’ bereavement care practices: recommendations for research directions. Int J Geriatr Psychiatry. 2014;29:1221–9.
  • Nagraj S, Barclay S. Bereavement care in primary care: a systematic literature review and narrative synthesis. Br J Gen Pract. 2011;61:e42–8.
  • McGrath P, Holewa H, McNaught M. Surviving spousal bereavement: insights for GPs. Aust Fam Physician. 2010;39:780–3.
  • Lobb E, Clayton J, Price M. Suffering, loss and grief in palliative care. Aust J Gen Pract. 2006;35:772.
  • Aoun SM, Hogden A, Kho LK. “Until there is a cure, there is care”: a person-centered approach to supporting the wellbeing of people with motor neurone disease and their family carers. Euro J Person Centered Healthcare. 2018;6:320–8.
  • Aoun SM, Breen LJ, Howting D, Edis R, Oliver D, Henderson R, et al. Receiving the news of a diagnosis of motor neuron disease: what does it take to make it better? Amyotroph Lateral Scler Frontotemporal Degener. 2016;17:168–78.
  • Foley G, Timonen V, Hardiman O. Patients’ perceptions of services and preferences for care in amyotrophic lateral sclerosis: a review. Amyotroph Lateral Scler. 2012;13:11–24.
  • Aoun SM, Rumbold B, Howting D, Bolleter A, Breen LJ. Bereavement support for family caregivers: the gap between guidelines and practice in palliative care. PLoS One. 2017;12:e0184750.
  • Agnew A, Manktelow R, Taylor B, Jones L. Bereavement needs assessment in specialist palliative care: a review of the literature. Palliat Med. 2010;24:46–59.
  • Aoun SM. The palliative approach to caring for motor neurone disease: from diagnosis to bereavement. Euro J Person Centered Healthcare. 2018;6:675–84.
  • Prigerson HG. Traumatic grief, disability, and the underutilization of health services: a preliminary examination. Primary Psychiatry 2001;8:61–6.
  • Vogel DL, Wade NG, Wester SR, Larson L, Hackler AH. Seeking help from a mental health professional: the influence of one’s social network. J Clin Psychol. 2007;63:233–45.
  • Ghesquiere A. “I was just trying to stick it out until i realized that i couldn’t”: a phenomenological investigation of support seeking among older adults with complicated grief. Omega. 2014;68:1–22.
  • Harris M, Thomas G, Thomas M, Cafarella P, Stocks A, Greig J, et al. Supporting wellbeing in motor neurone disease for patients, carers, social networks, and health professionals: a scoping review and synthesis. Palliat Support Care. 2018;16:228–37.
  • Liu W-M, Forbat L, Anderson K. Correction: death of a close friend: short and long-term impacts on physical, psychological and social well-being. PloS One. 2019;14:e0218026.
  • Logan EL, Thornton JA, Breen LJ. What determines supportive behaviors following bereavement? A systematic review and call to action. Death Stud. 2018;42:104–14.
  • Hauken MA, Dyregrov K, Senneseth M. Characteristics of the social networks of families living with parental cancer and support provided. J Clin Nurs. 2019;28:3021–32.
  • Aoun SM. Bereavement support: from the poor cousin of palliative care to a core asset of compassionate communities. Prog Palliative Care. 2020;28:107–14.
  • Maciejewski PK, Zhang B, Block SD, Prigerson HG. An empirical examination of the stage theory of grief. JAMA. 2007;297:716–23.
  • Goldstein L, Atkins L, Landau S, Brown R, Leigh P. Predictors of psychological distress in carers of people with amyotrophic lateral sclerosis: a longitudinal study. Psychol Med. 2006;36:865–75.
  • Rabkin JG, Albert SM, Rowland LP, Mitsumoto H. How common is depression among ALS caregivers? A longitudinal study. Amyotroph Lateral Scler. 2009;10:448–55.
  • Pagnini F, Rossi G, Lunetta C, Banfi P, Castelnuovo G, Corbo M, et al. Burden, depression, and anxiety in caregivers of people with amyotrophic lateral sclerosis. Psychol Health Med. 2010;15:685–93.

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