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Semin Speech Lang 2018; 39(03): 270-283
DOI: 10.1055/s-0038-1660785
Review Article
Thieme Medical Publishers 333 Seventh Avenue, New York, NY 10001, USA.

The Impact of Aphasia Camp Participation on Quality of Life: A Primary Progressive Aphasia Perspective

Esther S. Kim
1   Communication Sciences and Disorders, University of Alberta, Edmonton, Canada
,
Mathieu Figeys
2   Faculty of Rehabilitation Medicine, University of Alberta, Edmonton, Canada
,
H. Isabel Hubbard
1   Communication Sciences and Disorders, University of Alberta, Edmonton, Canada
,
Carlee Wilson
1   Communication Sciences and Disorders, University of Alberta, Edmonton, Canada
› Author Affiliations
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Publication History

Publication Date:
22 June 2018 (online)

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Abstract

Individuals with primary progressive aphasia (PPA) and their caregivers are at risk for decreased quality of life (QoL) due to their progressive condition. Aphasia camps are an intervention that can improve QoL, yet individuals with PPA are underrepresented at aphasia camps relative to those with poststroke aphasia. The purpose of this exploratory case study was to examine the effect of participation in aphasia camp on the QoL of a couple impacted by PPA. The Living with Aphasia: Framework for Outcome Measurement (A-FROM) was used to guide a semistructured interview with an individual with PPA and her spouse, both of whom had attended the Alberta Aphasia Camp for 4 years. Conventional content analysis with an inductive approach was used to analyze results. Concepts that emerged from the interview were organized into pre-camp, during, and post-camp categories. Aspects of camp that had an effect on post-camp QoL for this couple with PPA included expanding social connections and introduction to new activities. Personal characteristics exhibited by the couple had an impact on their experience of aphasia camp and how they incorporated their experiences into their everyday lives post-camp. Aphasia camps are a participation-based service approach that can benefit people with aphasia regardless of etiology. A consideration of personal factors of potential campers with PPA, and the provision of PPA-specific resources, is recommended for programs such as aphasia camps that incorporate participants with mixed etiologies.

Keywords

PPA - quality of life - aphasia camp - LPAA

Financial Disclosures

Esther S. Kim receives a salary from the University of Alberta. She has no relevant nonfinancial disclosures.


Mathieu Figeys has neither relevant financial nor nonfinancial disclosures.


H. Isabel Hubbard has neither relevant financial nor nonfinancial disclosures.


Carlee Wilson has neither relevant financial nor nonfinancial disclosures.


 

  • References

  • 1 Mesulam MM. Slowly progressive aphasia without generalized dementia. Ann Neurol 1982; 11 (06) 592-598
    CrossrefPubMedSearch in Google Scholar
  • 2 Grossman M. Primary progressive aphasia: clinicopathological correlations. Nat Rev Neurol 2010; 6 (02) 88-97
    CrossrefPubMedSearch in Google Scholar
  • 3 Gorno-Tempini ML, Hillis AE, Weintraub S. , et al. Classification of primary progressive aphasia and its variants. Neurology 2011; 76 (11) 1006-1014
    CrossrefPubMedSearch in Google Scholar
  • 4 Mesulam MM. Primary progressive aphasia--a language-based dementia. N Engl J Med 2003; 349 (16) 1535-1542
    CrossrefPubMedSearch in Google Scholar
  • 5 Khayum B, Wieneke C, Rogalski E, Robinson J, O'Hara M. Thinking outside the stroke: treating primary progressive aphasia (PPA). Perspect Gerontol 2012; 17 (02) 37-49
    CrossrefPubMedSearch in Google Scholar
  • 6 Fried-Oken M. Augmentative and alternative communication for persons with aphasia. Langauge Interv Strateg Adult Aphasia 2008; 17 (03) 99-104
    PubMedSearch in Google Scholar
  • 7 Rising K. Treatment for lexical retrieval in primary progressive aphasia. Perspect Neurophysiol Neurogenic Speech Lang Disord 2014; 24: 137-144
    CrossrefPubMedSearch in Google Scholar
  • 8 Hilari K, Klippi A, Constantinidou F. , et al. An international perspective on quality of life in aphasia: a survey of clinician views and practices from sixteen countries. Folia Phoniatr Logop 2015; 67 (03) 119-130
    CrossrefPubMedSearch in Google Scholar
  • 9 Cruice M, Isaksen J, Randrup-Jensen L, Eggers Viberg M, ten Kate O. Practitioners' perspectives on quality of life in aphasia rehabilitation in Denmark. Folia Phoniatr Logop 2015; 67 (03) 131-144
    CrossrefPubMedSearch in Google Scholar
  • 10 Karimi M, Brazier J. Health, health-related quality of life, and quality of life: what is the difference?. Pharmacoeconomics 2016; 34 (07) 645-649
    CrossrefPubMedSearch in Google Scholar
  • 11 Hilari K, Needle JJ, Harrison KL. What are the important factors in health-related quality of life for people with aphasia? A systematic review. Arch Phys Med Rehabil 2012; 93 (1, Suppl): S86-S95
    CrossrefPubMedSearch in Google Scholar
  • 12 Brown K, Worrall LE, Davidson B, Howe T. Living successfully with aphasia: a qualitative meta-analysis of the perspectives of individuals with aphasia, family members, and speech-language pathologists. Int J Speech-Language Pathol 2012; 14 (02) 141-155
    PubMedSearch in Google Scholar
  • 13 Hilari K, Wiggins RD, Roy P, Byng S, Smith SC. Predictors of health-related quality of life (HRQL) in people with chronic aphasia. Aphasiology 2003; 17 (04) 365-381
    CrossrefPubMedSearch in Google Scholar
  • 14 Hilari K, Byng S. Health-related quality of life in people with severe aphasia. Int J Lang Commun Disord 2009; 44 (02) 193-205
    CrossrefPubMedSearch in Google Scholar
  • 15 Banerjee S, Samsi K, Petrie CD. , et al. What do we know about quality of life in dementia? A review of the emerging evidence on the predictive and explanatory value of disease specific measures of health related quality of life in people with dementia. Int J Geriatr Psychiatry 2009; 24 (01) 15-24
    CrossrefPubMedSearch in Google Scholar
  • 16 Cruice M, Worrall L, Hickson L, Murison R. Finding a focus for quality of life with aphasia: social and emotional health, and psychological well-being. Aphasiology 2003; 17 (04) 333-353
    CrossrefPubMedSearch in Google Scholar
  • 17 Kagan A, Simmons-Mackie N, Rowland A. , et al. Counting what counts: a framework for capturing real-life outcomes of aphasia intervention. Aphasiology 2008; 22 (03) 258-280
    CrossrefPubMedSearch in Google Scholar
  • 18 World Health Organization. International Classification of Functioning, Disability and Health: ICF. World Health Organization; 2001
    Search in Google Scholar
  • 19 Roberta C, Duchan JF, Elman RJ. , et al. Life participation approach to aphasia: a statement of values for the future. ASHA Lead 2000; 5 (03) 4-6
    CrossrefPubMedSearch in Google Scholar
  • 20 Kim ES, Ruelling A, Garcia JR, Kajner R. A pilot study examining the impact of aphasia camp participation on quality of life for people with aphasia. Top Stroke Rehabil 2017; 24 (02) 107-113
    CrossrefPubMedSearch in Google Scholar
  • 21 Simmons-Mackie N, King JM, Beukelman DR. Supporting Communication for Adults with Acute and Chronic Aphasia. Baltimore, MD: Paul H. Brookes Publishing Co.; 2013: 346
    Search in Google Scholar
  • 22 Fox LE, Poulsen SB, Bawden KC, Packard D. Critical elements and outcomes of a residential family-based intervention for aphasia caregivers. Aphasiology 2004; 18 (12) 1177-1199
    CrossrefPubMedSearch in Google Scholar
  • 23 Hsieh HF, Shannon SE. Three approaches to qualitative content analysis. Qual Health Res 2005; 15 (09) 1277-1288
    Search in Google Scholar
  • 24 NVivo qualitative data analysis Software; QSR International Pty Ltd. Version 10, 2012
    PubMed
  • 25 Hughes S, Keller M. Leisure education: a coping strategy for family caregivers. J Gerontol Soc Work 1992; 19 (01) 99-114
    CrossrefPubMedSearch in Google Scholar
  • 26 Losada A, Pérez-Peñaranda A, Rodriguez-Sanchez E. , et al. Leisure and distress in caregivers for elderly patients. Arch Gerontol Geriatr 2010; 50 (03) 347-350
    CrossrefPubMedSearch in Google Scholar
  • 27 Wakui T, Saito T, Agree EM, Kai I. Effects of home, outside leisure, social, and peer activity on psychological health among Japanese family caregivers. Aging Ment Health 2012; 16 (04) 500-506
    CrossrefPubMedSearch in Google Scholar
  • 28 Kelly JR, Steinkamp MW, Kelly JR. Later life leisure: how they play in Peoria. Gerontologist 1986; 26 (05) 531-537
    CrossrefPubMedSearch in Google Scholar
  • 29 Davidson B, Worrall L, Hickson L. Identifying the communication activities of older people with aphasia: evidence from naturalistic observation. Aphasiology 2003; 17 (03) 243-264
    CrossrefPubMedSearch in Google Scholar
  • 30 Hilari K, Northcott S. Social support in people with chronic aphasia. Aphasiology 2006; 20 (01) 17-36
    CrossrefPubMedSearch in Google Scholar
  • 31 Brown K, Davidson B, Worrall LE, Howe T. “Making a good time”: the role of friendship in living successfully with aphasia. Int J Speech-Language Pathol 2013; 15 (02) 165-175
    PubMedSearch in Google Scholar
  • 32 Grohn B, Worrall LE, Simmons-Mackie N, Brown K. The first 3-months post-stroke: what facilitates successfully living with aphasia?. Int J Speech-Language Pathol 2012; 14 (04) 390-400
    PubMedSearch in Google Scholar
  • 33 Vickers CP. Social networks after the onset of aphasia: the impact of aphasia group attendance. Aphasiology 2010; 24 (6–8): 902-913
    CrossrefPubMedSearch in Google Scholar
  • 34 Nickels L, Croot K. Understanding and living with primary progressive aphasia: current progress and challenges for the future. Aphasiology 2014; 28 (December): 885-899
    CrossrefPubMedSearch in Google Scholar
  • 35 Grohn B, Worrall L, Simmons-Mackie N, Hudson K. Living successfully with aphasia during the first year post-stroke: a longitudinal qualitative study. Aphasiology 2014; 28 (12) 1405-1425
    CrossrefPubMedSearch in Google Scholar
  • 36 Jokel R, Meltzer J. D R J, et al. Group intervention for individuals with primary progressive aphasia and their spouses: who comes first?. J Commun Disord 2017; 66 (March): 51-64
    CrossrefPubMedSearch in Google Scholar
  • 37 Potter GG, Attix DK. Group psychotherapy approaches for dementia. In: Attix DK, Welsh-Bohnmer KA. , eds. Geriatric Neuropsychology Assessment and Intervention. 1st ed. New York, NY: Guildford Publications Inc; 2006: 394-413
    Search in Google Scholar
  • 38 Beales A, Cartwright J, Whitworth A, Panegyres PK. Exploring generalisation processes following lexical retrieval intervention in primary progressive aphasia. Int J Speech-Language Pathol 2016; 18 (03) 299-314
    PubMedSearch in Google Scholar
  • 39 Henry ML, Beeson PM, Rapcsak SZ. Treatment for lexical retrieval in progressive aphasia. Aphasiology 2008; 22 (7-8): 826-838
    CrossrefPubMedSearch in Google Scholar
  • 40 Henry ML, Rising K, DeMarco AT, Miller BL, Gorno-Tempini ML, Beeson PM. Examining the value of lexical retrieval treatment in primary progressive aphasia: two positive cases. Brain Lang 2013; 127 (02) 145-156
    CrossrefPubMedSearch in Google Scholar
  • 41 Henry ML, Meese MV, Truong S, Babiak MC, Miller BL, Gorno-Tempini ML. Treatment for apraxia of speech in nonfluent variant primary progressive aphasia. Behav Neurol 2013; 26 (1-2): 77-88
    CrossrefPubMedSearch in Google Scholar
  • 42 Henry ML, Hubbard HI, Grasso SM. , et al. Retraining speech production and fluency in nonfluent/agrammatic primary progressive aphasia. Brain 2018; 141 (06) 1799-1814
    CrossrefPubMedSearch in Google Scholar
  • 43 Beukelman DR, Fager S, Ball L, Dietz A. AAC for adults with acquired neurological conditions: a review. Augment Altern Commun 2007; 23 (03) 230-242
    CrossrefPubMedSearch in Google Scholar
  • 44 Fried-Oken M, Beukelman DR, Hux K. Current and future AAC research considerations for adults with acquired cognitive and communication impairments. Assist Technol 2011; 24 (01) 56-66
    PubMedSearch in Google Scholar