Patient-centered care provision is challenging under ideal circumstances; myotonic dystrophy (DM1) and Huntington’s disease (HD) are examples of chronic, progressive health conditions that may challenge its limits. If we can understand how care unfolds in these conditions, health care providers may be better equipped to address patients’ needs. Constructivist grounded theory informed data collection and analysis. Fourteen patients with DM1 or HD, and 10 caregivers participated in semistructured interviews. Constant comparative analysis was used to identify themes. Participants attended clinic to seek expert information and social support. Medical management, altruism, and support provided the motivation. However, motivations evolved, with clinic becoming more important for caregivers as patients deteriorated. Clinic was conceptualized as a “safe space” to actively participate in health care and research. In the absence of disease-halting or curative treatments, participants perceived that they derived a therapeutic benefit from seeking care and from engaging in education and advocacy.
AujoulatI.d’HooreW.DeccacheA. (2007). Patient empowerment in theory and practice: Polysemy or cacophony?Patient Education and Counseling, 66, 13–20.
2.
AujoulatI.LuminetO.DeccacheA. (2007). The perspective of patients on their experience of powerlessness. Qualitative Health Research, 17, 772–785.
3.
BardesC. L. (2012). Defining “patient-centered medicine.”New England Journal of Medicine, 366, 782–783.
4.
BarryM. J.Edgman-LevitanS. (2012). Shared decision making—The pinnacle of patient-centered care. New England Journal of Medicine, 366, 780–781.
5.
BensingJ. (2000). Bridging the gap: The separate worlds of evidence-based medicine and patient-centered medicine. Patient Education and Counseling, 39, 17–25.
6.
BerwickD. M. (2009). What “patient-centered” should mean: Confessions of an extremist. Health Affairs, 28, w555–w565.
7.
BlascoP.KohenH.ShaplandC. (1999). Parents-as-teachers: Design and establishment of a training programme for paediatric residents. Medical Education, 33, 695–701.
8.
BodenlosJ. S.GrotheK. B.WhiteheadD.Konkle-ParkerD. J.JonesG. N.BrantleyP. J. (2007). Attitudes toward health care providers and appointment attendance in HIV/AIDS patients. Journal of the Association of Nurses in AIDS Care, 18, 65–73.
9.
BoströmK.AhlströmG. (2005a). Living with a hereditary disease: Persons with muscular dystrophy and their next of kin. American Journal of Medical Genetics Part A, 136, 17–24.
10.
BoströmK.AhlströmG. (2005b). Quality of life in patients with muscular dystrophy and their next of kin. International Journal of Rehabilitation Research, 28, 103–109.
11.
BrainK.GrayJ.NormanP.ParsonsE.ClarkeA.RogersC.. . . HarperP. (2000). Why do women attend familial breast cancer clinics?Journal of Medical Genetics, 37, 197–202.
12.
CharmazK. (2006). Constructing grounded theory: A practical guide through qualitative analysis. London: SAGE.
13.
CharmazK. (2014). Constructing grounded theory (2nd ed.). Los Angeles: SAGE.
14.
ChouinardM. C.GagnonC.LabergeL.TremblayC.CôtéC.LeclercN.MathieuJ. (2009). The potential of disease management for neuromuscular hereditary disorders. Rehabilitation Nursing, 34, 118–126.
15.
CosterS.NormanI. (2009). Cochrane reviews of educational and self-management interventions to guide nursing practice: A review. International Journal of Nursing Studies, 46, 508–528.
16.
CupE. H.KinébanianA.SatinkT.PieterseA. J.HendricksH. T.OostendorpR. A.. . . van EngelenB. G. (2011). Living with myotonic dystrophy; what can be learned from couples? A qualitative study. BMC Neurology, 11(1), Article 86.
17.
DammersJ.SpencerJ.ThomasM. (2001). Using real patients in problem-based learning: Students’ comments on the value of using real, as opposed to paper cases, in a problem-based learning module in general practice. Medical Education, 35, 27–34.
18.
DawsonS.KristjansonL. J.ToyeC. M.FlettP. (2004). Living with Huntington’s disease: Need for supportive care. Nursing & Health Sciences, 6, 123–130.
19.
de Die-SmuldersC.HöwelerC.ThijsC.MirandolleJ.AntenH.SmeetsH.. . . GeraedtsJ. (1998). Age and causes of death in adult-onset myotonic dystrophy. Brain, 121, 1557–1563.
20.
DelaporteC. (1998). Personality patterns in patients with myotonic dystrophy. Archives of Neurology, 55, 635–640.
21.
DoucetS.LaucknerH.WellsS. (2013). Patients’ messages as educators in an interprofessional health education program. Journal of Research in Interprofessional Practice and Education, 3(1), 92–102.
22.
DunnN. (2003). Practical issues around putting the patient at the centre of care. Journal of the Royal Society of Medicine, 96, 325–327.
23.
EllsC.HuntM. R.Chambers-EvansJ. (2011). Relational autonomy as an essential component of patient-centered care. International Journal of Feminist Approaches to Bioethics, 4, 79–101.
GagnonC.ChouinardM.LabergeL.VeilletteS.BéginP.BretonR.. . . MathieuJ. (2010). Health supervision and anticipatory guidance in adult myotonic dystrophy type 1. Neuromuscular Disorders, 20, 847–851.
26.
GagnonC.MathieuJ.NoreauL. (2007). Life habits in myotonic dystrophy type 1. Journal of rehabilitation medicine, 39(7), 560–566.
27.
GagnonC.NoreauL.MoxleyR. T.LabergeL.JeanS.RicherL.. . . MathieuJ. (2007). Towards an integrative approach to the management of myotonic dystrophy type 1. Journal of Neurology, Neurosurgery & Psychiatry, 78, 800–806.
28.
GlaserB. S.StraussA. (1967). The discovery of grounded theory. New Brunswick, USA; London, UK:Aldine Transaction.
GruppenL. D.BranchV. K.LaingT. J. (1996). The use of trained patient educators with rheumatoid arthritis to teach medical students. Arthritis Care & Research, 9(4), 302–308.
31.
HarperP. S. (2001). Myotonic dystrophy (3rd ed.). London: Harcourt Publishers.
32.
HartleyS. E.GoodwinP. C.GoldbartJ. (2011). Experiences of attendance at a neuromuscular centre: Perceptions of adults with neuromuscular disorders. Disability and Rehabilitation, 33, 1022–1032.
33.
HeatwoleC.BodeR.JohnsonN.QuinnC.MartensW.McDermottM. P.. . . VictorsonD. (2012). Patient-reported impact of symptoms in myotonic dystrophy type 1 (PRISM-1). Neurology, 79, 348–357.
34.
HobbsJ. L. (2009). A dimensional analysis of patient-centered care. Nursing Research, 58, 52–62. doi:10.1097/NNR.0b013e31818c3e79
35.
HolmanH.LorigK. (2004). Patient self-management: A key to effectiveness and efficiency in care of chronic disease. Public Health Reports, 119, 239–243.
36.
Institute for Patient and Family-Centered Care. (2016). Advancing the practices of patient and family centered care in primary care and other ambulatory settings: How to get started. Bethesda, MD. Retrieved from http://www.ipfcc.org/resources/GettingStarted-AmbulatoryCare.pdf
37.
KarlawishJ.CasarettD.JamesB.TenHaveT.ClarkC. (2002). What factors explain differences between Alzheimer’s disease patients’ and caregivers’ ratings of patient quality of life (QOL)?Journal of the American Geriatrics Society, 50(S), S94–S95.
38.
KellyD.WykurzG. (1998). Patients as teachers: A new perspective in medical education. Education for Health, 11, 369–377.
39.
KremerB. (2002). Clinical neurology of Huntington’s disease: Diversity in unity, unity in diversity. In BatesG.HarperP.JonesL. (Eds.), Huntington’s disease (3rd ed., pp. 28–61). Oxford, UK: Oxford University Press.
40.
LaDonnaK. A.BatesJ.TaitG. R.McDougallA.SchulzV.LingardL. (2017). “Who is on your health-care team?” Asking individuals with heart failure about care team membership and roles. Health Expectations, 20, 198–210.
41.
LaDonnaK. A.VenanceS. L. (2015). Picturing the experience of living with myotonic dystrophy (DM1): A qualitative exploration using photovoice. Journal of Neuroscience Nursing, 47, 285–295.
42.
LaDonnaK. A.WatlingC. J.RayS. L.PiechowiczC.VenanceS. L. (2016). Myotonic dystrophy and Huntington’s disease care: “We like to think we’re making a difference.”Canadian Journal of Neurological Sciences, 43 (5), 678–686.
43.
LaucknerH.DoucetS.WellsS. (2012). Patients as educators: The challenges and benefits of sharing experiences with students. Medical Education, 46, 992–1000.
44.
LégaréF.RattéS.GravelK.GrahamI. D. (2008). Barriers and facilitators to implementing shared decision-making in clinical practice: Update of a systematic review of health professionals’ perceptions. Patient Education and Counseling, 73, 526–535.
45.
MadsenS.HolmS.RiisP. (1999). Ethical aspects of clinical trials: The attitudes of the public and out-patients. Journal of Internal Medicine, 245, 571–579.
46.
MathieuJ.AllardP.PotvinL.PrevostC.BeginP. (1999). A 10-year study of mortality in a cohort of patients with myotonic dystrophy. Neurology, 52, 1658–1658.
MeolaG.SansoneV.PeraniD.ScaroneS.CappaS.DragoniC.. . . FazioF. (2003). Executive dysfunction and avoidant personality trait in myotonic dystrophy type 1 (DM-1) and in proximal myotonic myopathy (PROMM/DM-2). Neuromuscular Disorders, 13, 813–821.
49.
MorseJ. M. (1995). The significance of saturation. Qualitative Health Research, 5, 147–149.
50.
NanceM. A. (2007). Comprehensive care in Huntington’s disease: A physician’s perspective. Brain Research Bulletin, 72, 175–178.
51.
PickettT.Jr.AltmaierE.PaulsenJ. S. (2007). Caregiver burden in Huntington’s disease. Rehabilitation Psychology, 52, 311–318.
52.
RichardsonW. C.BerwickD. M.BisgardJ.BristowL.BuckC.CasselC. (2001). Crossing the quality chasm: A new health system for the 21st century. Washington, DC: Institute of Medicine, National Academy Press.
53.
RoosR. A. (2010). Huntington’s disease: A clinical review. Orphanet Journal of Rare Diseases, 5, 40.
54.
RoscoeL. A.CorsentinoE.WatkinsS.McCallM.Sanchez-RamosJ. (2009). Well-being of family caregivers of persons with late-stage Huntington’s disease: Lessons in stress and coping. Health Communication, 24, 239–248.
55.
RøthingM.MalterudK.FrichJ. C. (2015a). Balancing needs as a family caregiver in Huntington’s disease: A qualitative interview study. Health & Social Care in the Community, 23, 569–576.
56.
RøthingM.MalterudK.FrichJ. C. (2015b). Family caregivers’ views on coordination of care in Huntington’s disease: A qualitative study. Scandinavian Journal of Caring Sciences, 29, 803–809.
57.
SchwartzL. (2002). Is there an advocate in the house? The role of health care professionals in patient advocacy. Journal of Medical Ethics, 28, 37–40.
58.
SistiagaA.UrretaI.JodarM.CoboA.EmparanzaJ.OtaeguiD.. . . Marti-MassoJ. (2010). Cognitive/personality pattern and triplet expansion size in adult myotonic dystrophy type 1 (DM1): CTG repeats, cognition and personality in DM1. Psychological Medicine, 40, 487–495.
59.
SobelS. K.CowanD. B. (2000). Impact of genetic testing for Huntington disease on the family system. American Journal of Medical Genetics, 90, 49–59.
60.
SolomonP.GuenterD.StinsonD. (2005). People with HIV as educators of health professionals. AIDS Patient Care and STDs, 19, 840–847.
61.
StraussA.CorbinJ. (1990). Basics of qualitative research (Vol. 15). Newbury Park, CA: SAGE.
62.
SturrockA.LeavittB. R. (2010). Journal of Geriatric Psychiatry and Neurology, 23(4), 243–259.
63.
TerrienJ. M.HaleJ. F. (2014). Patients as educators: Contemporary application of an old educational strategy to promote patient-centered care. Journal of Nursing Education and Practice, 4, 104–113.
64.
ThomasS.Glynne-JonesR.ChaitI. (1997). Is it worth the wait? A survey of patients’ satisfaction with an oncology outpatient clinic. European Journal of Cancer Care, 6, 50–58.
65.
TimmanR.TibbenA.WintzenA. R. (2010). Myotonic dystrophy: The burden for patients and their partners. Journal of Rehabilitation Medicine, 42, 823–830.
66.
TongA.SainsburyP.CarterS. M.HallB.HarrisD. C.WalkerR. G.. . . CraigJ. C. (2008). Patients’ priorities for health research: Focus group study of patients with chronic kidney disease. Nephrology Dialysis Transplantation, 23, 3206–3214.
67.
TowleA.BainbridgeL.GodolphinW.KatzA.KlineC.LownB.. . . ThistlethwaiteJ. (2010). Active patient involvement in the education of health professionals. Medical Education, 44, 64–74.
68.
TowleA.GodolphinW. (2013). Patients as educators: Interprofessional learning for patient-centred care. Medical Teacher, 35, 219–225.
69.
TurnerC.Hilton-JonesD. (2010). The myotonic dystrophies: Diagnosis and management. Journal of Neurology, Neurosurgery & Psychiatry, 81, 358–367.
70.
Van BaarJ.JoostenH.CarJ.FreemanG.PartridgeM.Van WeelC.. . . SheikhA. (2006). Understanding reasons for asthma outpatient (non)-attendance and exploring the role of telephone and e-consulting in facilitating access to care: Exploratory qualitative study. Quality and Safety in Health Care, 15, 191–195.
71.
WagnerE. H.BennettS. M.AustinB. T.GreeneS. M.SchaeferJ. K.VonkorffM. (2005). Finding common ground: Patient-centeredness and evidence-based chronic illness care. Journal of Alternative and Complementary Medicine, 11(Suppl. 1), S7–S15.
