People with motor neuron disease (MND) face barriers when accessing palliative care. There is a lack of research about how these barriers affect the end-of-life (EOL) and death experiences of people with MND.
Aim:
This study examined the perceptions of EOL experiences of family carers of people with MND in Western Australia (WA) to identify unmet needs and gaps in EOL support for people with MND and their family carers.
Design:
Semistructured interviews were conducted with 12 bereaved family carers of people who died from MND in WA. Thematic analysis was used to identify common themes.
Results:
The themes identified can be summarized into three main areas: accessing support, accessing information, and feeling prepared.
Conclusions:
The findings indicate that increased access to specialist palliative care services by people with MND is needed to improve EOL experiences.
Get full access to this article
View all access options for this article.
References
1.
TalbotK, TurnerMR, MarsdenR, BotellR: Motor Neuron Disease. Oxford: Oxford University Press, 2010.
2.
BlackhallL: Amyotrophic lateral sclerosis and palliative care: Where we are, and the road ahead. Muscle Nerve, 2012; 45:311–318.
3.
SimmonsZ: Rehabilitation of motor neuron disease. In: MichaelPB, DavidCG (eds.). Handbook of Clinical Neurology. Elsevier, 2013, pp. 483–498.
MerrileesJ, KlapperJ, MurphyJ, et al.: Cognitive and behavioral challenges in caring for patients with frontotemporal dementia and amyotrophic lateral sclerosis. Amyotroph Lateral Scler, 2010; 11:298–302.
7.
AounSM, BentleyB, FunkL, et al.: A 10-year literature review of family caregiving for motor neurone disease: Moving from caregiver burden studies to palliative care interventions. Palliat Med, 2013; 27:437–446.
8.
FoleyG, TimonenV, HardimanO: Exerting control and adapting to loss in amyotrophic lateral sclerosis. Soc Sci Med, 2014; 101:113–119.
9.
AndersenPM, AbrahamsS, BorasioGD, 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-E24.
10.
BedeP, OliverD, StodartJ, et al.: Palliative care in amyotrophic lateral sclerosis: A review of current international guidelines and initiatives. J Neurol Neurosurg Psychiatry, 2011; 82:413–418.
11.
WhiteheadB, O'BrienMR, JackBA, MitchellD: Experiences of dying, death and bereavement in motor neurone disease: A qualitative study. Palliat Med, 2012; 26:368–378.
12.
RayRA, BrownJ, StreetAF: Dying with motor neurone disease, what can we learn from family caregivers?. Health Expectat, 2014; 17:466–476.
13.
GanziniL, JohnstonWS, SilveiraMJ: The final month of life in patients with ALS. Neurology, 2002; 59:428–431.
14.
DawsonS, KristjansonLJ: Mapping the journey: Family carers' perceptions of issues related to end-stage care of individuals with muscular dystrophy or motor neurone disease. J Palliat Care, 2003; 19:36–42.
15.
HughesRA, SinhaA, HigginsonI, et al.: Living with motor neurone disease: Lives, experiences of services and suggestions for change. Health Soc Care Community, 2005; 13:64–74.
16.
O'BrienMR, WhiteheadB, JackBA, MitchellJD: 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; 34:247–256.
17.
FoleyG, TimonenV, HardimanO: Patients' perceptions of services and preferences for care in amyotrophic lateral sclerosis: A review. Amyotroph Lateral Scler, 2012; 13:11–24.
18.
McCluskeyL, HousemanG: Medicare hospice referral criteria for patients with amyotrophic lateral sclerosis: A need for improvement. J Palliat Med, 2004; 7:47–53.
19.
O'LearyN, TiernanE: Survey of specialist palliative care services for noncancer patients in Ireland and perceived barriers. Palliat Med, 2008; 22:77–83.
20.
HigginsonI, WadeA, McCarthyM: Palliative care: Views of patients and their families. BMJ, 1990; 301:277–281.
21.
HardingR, HigginsonI: What is the best way to help caregivers in cancer and palliative care? A systematic literature review of interventions and their effectiveness. Palliat Med, 2003; 17:63–74.
22.
CreswellJW: Research Design: Qualitative, Quantitative and Mixed Methods Approaches, 3rd ed. Los Angeles: Sage, 2009.
23.
HollowayI: Basic Concepts for Qualitative Research. London: Blackwell Science, 1997.
24.
BraunV, ClarkeV: Using thematic analysis in psychology. Qual Res Psychol, 2006; 3:77–101.
Ryan-NichollsK, WillC: Rigour in qualitative research: Mechanisms for control. Nurse Res, 2009; 16:70–85.
27.
AndersonPM, BorasioGD, DenglerR, et al.: EFNS task force on management of amyotrophic lateral sclerosis: Guidelines for diagnosing and clinical care of patients and relatives; and evidence-based review with good practice points. Eur J Neurol, 2005; 12:921–938.
28.
GoyER, CarterJ, GanziniL: Neurologic disease at the end of life: Caregiver descriptions of Parkinson disease and amyotrophic lateral sclerosis. J Palliat Med, 2008; 11:548–554.
29.
O'BrienMR, WhiteheadB, MurphyPN, et al.: Social services homecare for people with motor neurone disease/amyotrophic lateral sclerosis: Why are such services used or refused?. Palliat Med, 2011; 26:123–131.
30.
McConigleyR, KristjansonL, AounS, et al.: Staying just one step ahead: Providing care for patients with motor neurone disease. BMJ Support Palliat Care, 2014; 4:38–42.
31.
BahnS, GilesM: Evaluation of the Neurodegenerative Conditions Coordinated Care Program (NCCCP) in Western Australia: Barriers to better service provision. Eval Program Plann, 2012; 35:40–46.
32.
O'BrienMR, WhiteheadB, JackBA, MitchellJD: Multidisciplinary team working in motor neurone disease: Patient and family carer views. Br Med J, 2011; 7:580–585.
33.
van TeijingenER, FriendE, KamalAD: Service use and needs of people with motor neurone disease and their carers in Scotland. Health Soc Care Community, 2001; 9:397–403.
34.
KrivickasLS, ShockleyL, MitsumotoH: Home care of patients with amyotrophic lateral sclerosis (ALS). J Neurol Sci, 1997; 152(Suppl. 1): S82–S89.
35.
LemoignanJ, EllsC: Amyotrophic lateral sclerosis and assisted ventilation: How patients decide. Palliat Support Care, 2010; 8:207–213.
36.
WicksP, FrostJ: ALS patients request more information about cognitive symptoms. Eur J Neurol, 2008; 15:497–500.
37.
HogdenA, GreenfieldD, NugusP, KiernanMC: What influences patient decision-making in amyotrophic lateral sclerosis multidisciplinary care? A study of patient perspectives. Patient Prefer Adherence, 2012; 6:829–838.
38.
SchofieldPE, ButowPN: Towards better communication in cancer care: A framework for developing evidence-based interventions. Patient Educ Couns, 2004; 55:32–39.
39.
BentleyB, O'ConnorM, BreenLJ, KaneRT: Feasibility, acceptability and potential effectiveness of dignity therapy for family carers of people with motor neurone disease. BMC Palliat Care, 2014; 13.
