Third-party disability in family members of people with aphasia: a systematic review

Grawburg, Meghann; Howe, Tami; Worrall, Linda; Scarinci, Nerina

doi:10.3109/09638288.2012.735341

Cited by 60 publications

(34 citation statements)

References 65 publications

Supporting

Mentioning

Contrasting

Unclassified

Order By: Relevance

“…Evidence not only in the TBI literature but also in the stroke (Bakas, Kroenke, Plue, Perkins, & Williams, 2006; Grawburg, Howe, Worrall, & Scarinci, 2013) and dementia (Eloniemi-Sulkava et al, 2002; Pozzebon, Douglas, & Ames, 2016) literature shows that intimate relationships are vulnerable to pragmatic impairments that result in even subtle changes in interpersonal communication. Further, these changes can progressively erode the fabric of a couple's relationship and pose a direct threat to the cohesion of that relationship.…”

Section: The Experience Of Pragmatic Deficits Within Relationshipsmentioning

confidence: 99%

“So that's the way it is for me — always being left out.” Acquired Pragmatic Language Impairment and Social Functioning following Traumatic Brain Injury

Douglas

2017

Brain Impairment

View full text Add to dashboard Cite

Our ability to interact appropriately in everyday interpersonal situations is fundamental to successful social integration. Impaired pragmatic competence correlates significantly and substantially with indices of social function across several domains for adults with acquired neurological disorders. In particular, evidence supports the negative impact of pragmatic impairments on the development and maintenance of relationships and community integration more generally.Pragmatic language competence sits in a complex, multifactorial space characterised by interacting associations with cognitive and psychological functions and social and environmental parameters. This complexity is evident in much of the research seeking to unravel the nature and magnitude of interactions between pragmatic language competence and social outcomes in adults with acquired neurological disorders.Over recent years our understanding of the impact of pragmatic impairments on social outcome has benefited substantially from inclusion of the insider's perspective in our research evidence base. Indeed, a methodological inclusion of constructivist paradigms has enabled the development of a rich understanding of the devastating social impact of impaired pragmatic competence.The aim of this paper is to review pragmatic language impairment in the context of traumatic brain injury (TBI) and detail its impact on social functioning from the perspectives of people with TBI and their intimate partners/spouses and friends. With these perspectives as background, the paper concludes with consideration of therapeutic developments and a brief look at a novel intervention designed to reduce the negative impact of pragmatic deficits and improve functional language use following TBI.

show abstract

Section: The Experience Of Pragmatic Deficits Within Relationshipsmentioning

confidence: 99%

“So that's the way it is for me — always being left out.” Acquired Pragmatic Language Impairment and Social Functioning following Traumatic Brain Injury

Douglas

2017

Brain Impairment

View full text Add to dashboard Cite

show abstract

“…In her writing Extensions on Te Wheke, Love (2004, p. 43) pointed out that for Māori "the health and well-being of the individual and the whānau are indivisible". Aphasia is known to effect changes in family roles and negatively impact relationships in the family and broader community (Grawburg, Howe, Worrall, & Scarinci, 2013a, 2013bHallé, Duhamel, & Le Dorze, 2011;Le Dorze & Brassard, 1995;Michallet, Tétreault, & Le Dorze, 2003) and intimate relationships (Grawburg et al, 2013a;Le Dorze & Brassard, 1995;Lemieux, Cohen-Schneider, & Holzapfel, 2001). Therefore, for Māori, if whānau relationships are negatively affected by aphasia, the health and well-being of the whole whānau is likely to suffer.…”

mentioning

confidence: 93%

“For Māori, language is precious. And without it we are a bit lost”: Māori experiences of aphasia

et al. 2013

View full text Add to dashboard Cite

Background: Experiences of aphasia are shaped by culture. Therefore, to provide appropriate services for people with aphasia (PWA), speech-language therapists (SLTs) must understand aphasia from their potential clients' cultural perspective. Aims: This study aimed to describe and interpret the experiences of Māori with aphasia and their whānau (extended family), to inform service delivery for this population. Methods & Procedures:This study is kaupapa Māori research (KMR), an Indigenous research approach that privileges Māori culture and knowledge. A qualitative methodology, interpretive description (ID), was incorporated to produce clinically relevant findings that will benefit SLTs and Māori. In-depth interviews were undertaken with 11 Māori with aphasia and their nominated whānau members. Participants spoke about aphasia-related changes in relationships, health, spirituality, activities and family and community roles. Analysis was informed by interpretive description (ID) and kaupapa Māori. Outcomes & Results: Participants described a range of positive and negative experiences of aphasia. These developed into two pairs of themes: (1) "Grieving for what is lost" and "Recognising what we have got" (2) "It is hard" and "Choosing how to respond". Conclusions: Aphasia can have a profound effect on Māori families and bring many changes in family roles and relationships. Despite difficulties, whānau can actively manage their situation, and enable the person with aphasia to participate in the whānau and community. The findings of this study will inform clinical practice and provide the basis for the development of resources for use in speech-language therapy services for Māori with aphasia and their whānau.

show abstract

“…Significant third-party disability has been demonstrated among the families of people living with disability, particularly diseases that impair communication such as hearing loss, aphasia, and dysphagia (Grawburg, Howe, Worrall, & Scarinci, 2013;Nund et al, 2016;Threats, 2010). Third party disability refers to the negative, disabling impacts experienced by a person due to a disease process whose subject is not themselves, such as the hearing loss of a partner, or cerebral palsy experienced by a child (World Health Organisation, 2001).…”

Section: What Is Patient-and Family-centred Care?mentioning

confidence: 99%

Conceptualisation of patient- and family-centred care for young adults with hearing loss and their family members

Allen¹

View full text Add to dashboard Cite

The period of life between 16 and 25 years of age is an important time of change and development, with many young people leaving home, moving into tertiary education, establishing careers, or beginning families of their own. In Australia, more than 8000 young adults are living with a hearing loss requiring hearing rehabilitation. These hearing losses have the potential to have significant and far-reaching consequences for the social, emotional, educational, and vocational lives of these young adults, and it is currently unclear what these effects might be, or whether hearing rehabilitation is reducing them. In addition, while it is known that the effects of chronic health conditions including hearing loss can be effectively reduced by the application of patient-and family-centred care (PFCC), it is not currently clear what constitutes PFCC in this population. This thesis aimed to explore the lived experiences of young adults with hearing loss and to identify the nature of high-quality PFCC among them and their family members. Beginning with two systematic reviews of previously-published research addressing PFCC among young adults with other chronic health conditions, the likely primary elements of PFCC were identified, as well as evidence suggesting that attempts to implement these elements are likely to result in improved outcomes for young adults with chronic health conditions. Following this preparatory work, a survey was conducted to explore the demographics of young adults with hearing loss in Australia, and compare these to those of other young adults in Australia. Significantly poorer life satisfaction outcomes were found for young adults with hearing loss, although a correlation between life satisfaction and the patientcentredness of hearing (re)habilitation was identified, supporting the importance of patientcentred intervention in this population.

show abstract

Third-party disability in family members of people with aphasia: a systematic review

Cited by 60 publications

References 65 publications

“So that's the way it is for me — always being left out.” Acquired Pragmatic Language Impairment and Social Functioning following Traumatic Brain Injury

“So that's the way it is for me — always being left out.” Acquired Pragmatic Language Impairment and Social Functioning following Traumatic Brain Injury

“For Māori, language is precious. And without it we are a bit lost”: Māori experiences of aphasia

Conceptualisation of patient- and family-centred care for young adults with hearing loss and their family members

Contact Info

Product

Resources

About