‘This is your golden time. You enjoy it and you’ve plenty time for crying after’: How dysphagia impacts family caregivers of people with amyotrophic lateral sclerosis – A qualitative study
Restricted accessResearch articleFirst published online September, 2020
‘This is your golden time. You enjoy it and you’ve plenty time for crying after’: How dysphagia impacts family caregivers of people with amyotrophic lateral sclerosis – A qualitative study
Dysphagia (swallowing impairments) is a well-recognised symptom of amyotrophic lateral sclerosis. Caring for a person with amyotrophic lateral sclerosis has been recognised as a complex and demanding task. No study to date investigated the impact of dysphagia on the lives of caregivers of people with amyotrophic lateral sclerosis.
Aim:
To investigate the experiences of dysphagia from the perspective of family caregivers of people diagnosed with amyotrophic lateral sclerosis.
Design:
Interpretative phenomenological analysis was employed. Individual interviews (n = 15) plus observations of mealtime preparation were conducted, where possible (seven or n).
Setting/participants:
Participants comprised family caregivers of people with amyotrophic lateral sclerosis and dysphagia living in the South West of Ireland (n = 10).
Findings:
Dysphagia transformed the mealtime experiences of the caregivers and changed their approaches to food. Frustration related to the inability to stabilise the weight of the person with amyotrophic lateral sclerosis and the fear of choking emerged strongly. The caregivers strived to ensure the safety of people with amyotrophic lateral sclerosis during meals by providing constant supervision. Despite the challenges precipitated by dysphagia and amyotrophic lateral sclerosis, the caregivers wished to maintain normality for as long as they perceived it to be possible.
Conclusion:
This study provides a unique contribution in advancing our understanding of the impact of dysphagia on the caregivers of people with amyotrophic lateral sclerosis. Professionals must explore and recognise the needs of the caregivers and provide them with appropriate support, especially how to manage choking.
Van der GraaffMMde JongJMBaasF, et al. Upper motor neuron and extra-motor neuron involvement in amyotrophic lateral sclerosis: a clinical and brain imaging review. Neuromuscul Disord2009; 19(1): 53–58.
2.
GladmanMZinmanL. The economic impact of amyotrophic lateral sclerosis: a systematic review. Expert Rev Pharmacoecon Outcomes Res2015; 15(3): 439–450.
3.
FergusonTAElmanLB. Clinical presentation and diagnosis of amyotrophic lateral sclerosis. Neurorehabilitation2007; 22(6): 409–416.
4.
BensimonGLacomblezLMeiningerV. A controlled trial of riluzole in amyotrophic lateral sclerosis. ALS/Riluzole Study Group. N Engl J Med1994; 330(9): 585–591.
5.
BensimonGLacomblezLDelumeauJC, et al. A study of riluzole in the treatment of advanced stage or elderly patients with amyotrophic lateral sclerosis. J Neurol2002; 249(5): 609–615.
6.
ClevelandDWRothsteinJD. From Charcot to Lou Gehrig: deciphering selective motor neuron death in ALS. Nat Rev Neurosci2001; 2(11): 806–819.
7.
MeiningerVLacomblezLSalachasF. What has changed with riluzole?J Neurol2000; 247(Suppl. 6): 19–22.
8.
National Institute for Health and Care Excellence. Motor neurone disease: assessment and management in NG 42, 2019, https://www.nice.org.uk/guidance/ng42
MillerRGMitchellJDLyonM, et al. Riluzole for amyotrophic lateral sclerosis (ALS)/motor neuron disease (MND). Cochrane Database Syst Rev2002(2): CD001447.
11.
TanakaMSakataTPalumboJ, et al. A 24-Week, Phase III, Double-Blind, Parallel-Group Study of Edaravone (MCI-186) for Treatment of Amyotrophic Lateral Sclerosis (ALS) (P3.189). Neurology2016; 86(16 Suppl.): P3.189.
ChiòALogroscinoGHardimanO, et al. Prognostic factors in ALS: a critical review. Amyotroph Lateral Scler2009; 10(5–6): 310–323.
14.
BouteloupCDJDesportJCClavelouP, et al. Hyper-metabolism in ALS patients: an early and persistent phenomenon. J Neurol2009; 256(8): 1236–1242.
15.
HarwoodCAMcDermottCJShawPJ. Clinical aspects of motor neurone disease. Medicine2012; 40(10): 540–545.
16.
RooneyJBSHeverinMCorrB, et al. Survival analysis of Irish amyotrophic lateral sclerosis patients diagnosed from 1995–2010. PLoS ONE2013; 8(9): e74733.
17.
O’TooleOTraynorBJBrennanP, et al. Epidemiology and clinical features of amyotrophic lateral sclerosis in Ireland between 1995 and 2004. J Neurol Neurosurg Psychiatry2008; 79(1): 30–32.
18.
JawaidAMurthySBWilsonAM, et al. A decrease in body mass index is associated with faster progression of motor symptoms and shorter survival in ALS. Amyotroph Lateral Scler2010; 11(6): 542–548.
19.
KornerSHendricksMKolleweK, et al. Weight loss, dysphagia and supplement intake in patients with amyotrophic lateral sclerosis (ALS): impact on quality of life and therapeutic options. BMC Neurology2013; 13: 84.
20.
LimousinNBlascoHCorciaP, et al. Malnutrition at the time of diagnosis is associated with a shorter disease duration in ALS. J Neurol Sci2010; 297(1–2): 36–39.
21.
StamblerNCharatanMCedarbaumJM. Prognostic indicators of survival in ALS. Neurology1998; 50(1): 66–72.
22.
OliverD. The quality of care and symptom control – the effects on the terminal phase of ALS/MND. J Neurol Sci1996; 139(Suppl.): 134–136.
23.
RobbinsJ. Swallowing in ALS and motor neuron disorders. Neurol Clin1987; 5(2): 213–229.
24.
BrianiCMarconMErmaniM, et al. Radiological evidence of subclinical dysphagia in motor neuron disease. J Neurol1998; 245(4): 211–216.
25.
GranerDStrandAE. Management of dysarthria and dysphagia in patients with amyotrophic lateral sclerosis. Perspect Neurophysiol Neuroge Speech Language2010; 20(2): 39–44.
26.
KawaiSTsukudaMMochimatsuI, et al. A study of the early stage of Dysphagia in amyotrophic lateral sclerosis. Dysphagia2003; 18(1): 1–8.
27.
ReganJWalsheM. Neuromuscular conditions. In: NewmanRDNightingaleJM (eds) Videofluoroscopy: a multidisciplinary team approach. San Diego, CA: Plural Publishing, 2012, pp. 177–198.
28.
CicheroJAYMurdochBE. Dysphagia: foundation, theory and practice. Chichester: Wiley, 2006.
29.
MurryTCarrauRLChanKMK. Clinical management of swallowing disorders. San Diego, CA: Plural Publishing, 2016.
30.
NundRLWardECScarinciNA, et al. Carers’ experiences of dysphagia in people treated for head and neck cancer: a qualitative study. Dysphagia2014; 29(4): 450–458.
31.
AraiK. Experiences of family caregivers for patients suffering from dysphagia – the attempt of subjective caregiving. Gan to Kagaku Ryoho2005; 32(Suppl. 1): 50–52.
32.
PattersonJMRapleyTCardingPN, et al. Head and neck cancer and dysphagia: caring for carers. Psychooncology2013; 22(8): 1815–1820.
33.
PennerJLMcClementSLobchukM, et al. Family members’ experiences caring for patients with advanced head and neck cancer receiving tube feeding: a descriptive phenomenological study. J Pain Symptom Manage2012; 44(4): 563–571.
34.
ChadwickDDJolliffeJGoldbartJ. Barriers to caregiver compliance with eating and drinking recommendations for adults with intellectual disabilities and dysphagia. J Appl Res Intellect Disabil2006; 19(2): 153–162.
35.
LaDonnaKAKoopmanWJRaySL, et al. Hard to swallow: a phenomenological exploration of the experience of caring for individuals with myotonic dystrophy and dysphagia. J Neurosci Nurs2016; 48(1): 42–51.
36.
TrailMNelsonNDVanJN, et al. A study comparing patients with amyotrophic lateral sclerosis and their caregivers on measures of quality of life, depression, and their attitudes toward treatment options. J Neurol Sci2003; 209(1–2): 79–85.
37.
GalvinMCarneySCorrB, et al. Needs of informal caregivers across the caregiving course in amyotrophic lateral sclerosis: a qualitative analysis. BMJ Open2018; 8(1): e018721.
38.
FoleyG. Burdened by obligation: recognising the caring roles of people with motor neurone disease. Palliat Med2016; 30(10): 981–982.
39.
BrulettiGCominiLScalviniS, et al. A two-year longitudinal study on strain and needs in caregivers of advanced ALS patients. Amyotroph Lateral Scler Frontotemporal Degener2015; 16(3–4): 187–195.
40.
De WitJBakkerLAvan GroenestijnAC, et al. Caregiver burden in amyotrophic lateral sclerosis: a systematic review. Palliat Med2018; 32(1): 231–245.
41.
AounSMBentleyBFunkL, et al. A 10-year literature review of family caregiving for motor neurone disease: moving from caregiver burden studies to palliative care interventions. Palliat Med2012; 27(5): 437–446.
42.
StavroulakisTBairdWOBaxterSK, et al. The impact of gastrostomy in motor neurone disease: challenges and benefits from a patient and carer perspective. BMJ Support Palliat Care2016; 6(1): 52–59.
43.
StavroulakisTBairdWOBaxterSK, et al. Factors influencing decision-making in relation to timing of gastrostomy insertion in patients with motor neurone disease. BMJ Support Palliat Care2014; 4(1): 57–63.
44.
TongASainsburyPCraigJ. Consolidated criteria for reporting qualitative research (COREQ): a 32-item checklist for interviews and focus groups. Int J Qual Health Care2007; 19(6): 349–357.
45.
SmithJA. Beyond the divide between cognition and discourse: using interpretative phenomenological analysis in health psychology. Psychol Health1996; 11: 261–271.
SmithJA. Evaluating the contribution of interpretative phenomenological analysis. Health Psychol Rev2011; 5(1): 9–27.
48.
SmithJAOsbornM. Interpretative phenomenological analysis. In: SmithJA (ed.) Qualitative psychology: a practical guide to methods. London: SAGE, 2003.
49.
KatzmanRBrownTFuldP, et al. Validation of a short orientation-memory-concentration test of cognitive impairment. Am J Psychiatry1983; 140(6): 734–739.
50.
LisieckaDKellyHJacksonJ. How do people with Motor Neurone Disease experience dysphagia? A qualitative investigation of personal experiences. Disabil Rehabil. Epub ahead of print 28 June 2019. DOI: 10.1080/09638288.2019.1630487.
51.
FlowersP. Temporal tales: the use of multiple interviews with the same participant. Qual Meth Psychol Sec Newsl2008; 5: 24–27.
52.
YardleyL. Dilemmas in qualitative health research. Psychol Health2000; 15(2): 215–228.
53.
ButtsJRichKL. Philosophies and theories for advanced nursing practice. Burlington, MA: Jones & Bartlett Learning, 2013.
54.
Namasivayam-MacDonaldAMShuneSE. The burden of dysphagia on family caregivers of the elderly: a systematic review. Geriatrics (Basel, Switzerland)2018; 3(2): 30.
RuoppoloGSchettinoIFrascaV, et al. Dysphagia in amyotrophic lateral sclerosis: prevalence and clinical findings. Acta Neurol Scand2013; 128(6): 397–401.
57.
GroherMECraryMA. Dysphagia: clinical management in adults and children. 1st ed. Maryland Heights, MO: Mosby, 2009.
58.
MuscaritoliMKushtaIMolfinoA, et al. Nutritional and metabolic support in patients with amyotrophic lateral sclerosis. Nutrition2012; 28(10): 959–966.
59.
ChiòAGauthierACalvoA, et al. Caregiver burden and patients’ perception of being a burden in ALS. Neurology2005; 64(10): 1780–1782.
60.
McCabeMPFirthLO’ConnorE. A comparison of mood and quality of life among people with progressive neurological illnesses and their caregivers. J Clin Psychol Med Settings2009; 16(4): 355–362.
61.
JenkinsonCFitzpatrickRSwashM, et al. The ALS Health Profile Study: quality of life of amyotrophic lateral sclerosis patients and carers in Europe. J Neurol2000; 247(11): 835–840.
62.
HolkhamLSoundyA. The experience of informal caregivers of patients with motor neurone disease: a thematic synthesis. Palliat Support Care2018; 16(4): 487–496.
63.
ChiòAGauthierAVignolaA, et al. Caregiver time use in ALS. Neurology2006; 67(5): 902–904.
64.
GalvinMCorrBMaddenC, et al. Caregiving in ALS – a mixed methods approach to the study of Burden. BMC Palliat Care2016; 15(1): 81.
65.
RayRStreetAF. Caregiver bodywork: family members’ experiences of caring for a person with motor neurone disease. J Adv Nurs2006; 56(1): 35–43.
66.
HemsleyBSteelJSheppardJJ, et al. Dying for a meal: an integrative review of characteristics of choking incidents and recommendations to prevent fatal and nonfatal choking across populations. Am J Speech Lang Pathol2019; 28: 1283–1297.
67.
HadjikoutisSEcclesRWilesCM. Coughing and choking in motor neuron disease. J Neurol Neurosurg Psychiatry2000; 68(5): 601–604.
68.
PagniniFRossiGLunettaC, et al. Burden, depression, and anxiety in caregivers of people with amyotrophic lateral sclerosis. Psychol Health Med2010; 15(6): 685–693.
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