Third-party Disability Research Articles

Navigating childhood hearing loss: the experiences of parents, grandparents and siblings

Purpose This study aimed to explore the impact of childhood hearing loss on the family unit and their resulting intervention needs. Materials & Methods Qualitative descriptive methodology was used, with in-depth interviews analysed using reflexive thematic analysis. Four family units of children with hearing loss participated in the study, including parents (n = 5), grandparents (n = 7), and siblings (n = 5). Results Five themes were developed from interview data: (1) the daily grind; (2) we’re all in this together; (3) family dynamics; (4) the early intervention experience and (5) personal growth and adaptations. Family members were impacted in multi-faceted ways and identified informational and emotional intervention needs, with an integrative theme highlighting the emotional toll of childhood hearing loss on families. Conclusions Early intervention services have a crucial role in addressing third-party disability through a multi-disciplinary service delivery model that addresses the needs of all family members, beyond the child with hearing loss.

The Indirect Effect of an Internet-Based Intervention on Third-Party Disability for Significant Others of Individuals with Tinnitus.

This study aimed to investigate whether Internet-based cognitive behavioural therapy intervention (ICBT) for individuals with tinnitus had an indirect effect on the third-party disability noticed by significant others (SOs). Significant Others Questionnaire (CTSOQ). Individuals with tinnitus completed standardized self-reported outcome measures for tinnitus severity, anxiety, depression, insomnia, hearing-related quality of life, tinnitus cognitions, hearing disability, and hyperacusis. In total, 194 pairs of individuals with tinnitus and their SOs participated. The impact of third-party disability experienced by SOs was significantly reduced after individuals with tinnitus undertook the ICBT intervention (d = 0.41). This reduced SOs with severe difficulties from 52% to 35%. The remaining impact was mild for 30% and moderate for 35%. SOs with higher baseline difficulties and SOs who were partners (e.g., spouses) were less likely to notice indirect benefits from intervention undertaken by their family members. There was a moderate positive correlation between the post-intervention CTSOQs and the clinical variables of tinnitus severity and depression. Third-party disability may be reduced as an indirect effect of individuals with tinnitus undertaking ICBT. Including SOs of individuals with tinnitus within the rehabilitation process may add additional benefits, and such involvement should be encouraged.

“It’s not a normal relationship, and it won’t be”: The impact of aphasia on spouses

ABSTRACT Background Aphasia has far-reaching effects on both the affected individuals and their surroundings. In 2001, the World Health Organization (WHO) introduced the International Classification of Functioning (ICF) model, which includes the concept of “third-party disability”, highlighting the challenges faced by healthy partners when their significant others have a medical condition. Despite family members expressing a willingness to engage in rehabilitation, healthcare professionals often overlook their negative emotions. Aim & Methods This study explores the impact of aphasia on spouses of people with aphasia (PWA). Using mixed methods, it involved 30 spouses who completed the Family Aphasia Measure of Life Impact questionnaire (FAMLI. Grawburg et al. 2019), assessing the healthy partner’s functioning concerning the PWA. Additionally, 12 spouses from the same group participated in in-depth interviews about their lives before the stroke, their experiences during it, and life alongside aphasia. Results The FAMLI questionnaire revealed notably low scores in four of five categories: health and daily life, helping others, communication and emotion and outside influences and interactions. However, the attitudes and personal life category yielded a positive score. The communication and emotion category had the most pronounced negative impact, a finding supported and enhanced by the interviews. Challenges included an overwhelming sense of burden and profound loss within marital relationships. Conclusion Spouses of PWA face an emotionally taxing journey, with communication impairment reshaping marital dynamics. Speech-language pathologists should play a role in restoring effective communication. Addressing spouses’ unique needs should be a research and clinical priority.

Third-Party Disability for Significant Others of Individuals with Tinnitus: A Cross-Sectional Survey Design.

There is currently increasing awareness of third-party disability, defined as the disability and functioning of a significant other (SO) due to a health condition of one of their family members. The effects of third-party disability on the SOs of individuals with tinnitus has received little attention. To address this knowledge gap, this study investigated third-party disability in the significant others (SOs) of individuals with tinnitus. A cross-sectional survey design included 194 pairs of individuals from the USA with tinnitus and their significant others. The SO sample completed the Consequences of Tinnitus on Significant Others Questionnaire (CTSOQ). Individuals with tinnitus completed standardized self-reported outcome measures for tinnitus severity, anxiety, depression, insomnia, hearing-related quality of life, tinnitus cognitions, hearing disability, and hyperacusis. The CTSOQ showed that 34 (18%) of the SOs were mildly impacted, 59 (30%) were significantly impacted, and 101 (52%) were severely impact. The clinical variables of tinnitus severity, anxiety, and hyperacusis in individuals with tinnitus were the best predictors of the impact of tinnitus on SOs. These results show that the SOs of individuals with tinnitus may experience third-party disability. The effect of the individual's tinnitus on their SO may be greater when the individual with tinnitus has a higher level of tinnitus severity, anxiety, and hyperacusis.

Preliminary Study of the Effects of a Dysphagia Support Group on Quality of Life.

Dysphagia (swallowing difficulties) can greatly decrease quality of life for individuals with dysphagia and can lead to caregiver burden and third-party disability. Support groups have been shown to be effective in improving quality of life in a range of conditions, through allowing individuals to form connections with those with shared experiences and sharing and learning about relevant resources and coping skills. However, no research on the effects of dysphagia support groups on quality of life has been conducted. This preliminary study aimed to determine whether a virtual support group, facilitated by speech-language pathologists, could positively affect quality of life in similar ways for adults with dysphagia and their family caregivers. Pre- and postsupport group surveys were sent to participants to gain information about their dysphagia, demographics, and support group feedback (e.g., access to resources). Questions were mainly multiple choice, with three open-ended questions related to the support group. Eight individuals participated in the surveys, with four completing both pre- and postsession surveys. Seven of eight individuals reported that they felt a support group could improve their quality of life, with the eighth being unsure. Qualitative data found the support group offered both informational (e.g., resource access) and psychosocial support (e.g., knowledge that they were not alone, emotional support). These initial results suggest that a dysphagia support group could fill a gap in the health care system to offer more holistic support to individuals with dysphagia and their family caregivers.

Comparative study of third-party disability between mothers of children using hearing aids and those using cochlear implants

Purpose: The study aims to investigate on application of ICF framework’s third-party disability in mothers of children with pre-lingual hearing impairment using hearing aids and cochlear implants. Method: This is a comparative study of 30 mothers of children (age between 8-12) using cochlear implant (G-1) and 30 mothers of children (age between 8-12) using hearing aids (G-2) was included for the study. A questionnaire was developed based on ICF-CY version, consisting of 46 questions distributed across 9 domains. The questionnaire form in the Hindi language was provided to the participants (mothers) with enough amount of time to complete it. For mothers who were not able to self-administer the tool, the researcher helped by interviewing them. Due to COVID- 19 pandemic and ensuing lockdown most parents (mothers) were unwilling to report to the clinic. Owing to this, to ensure safety of parents and children, data was obtained through virtual mode. Results: Across all domains, the comparison between Group A and Group B indicates no statistically significant difference except for two domains (general tasks and behaviours, communication). When the total third-party disability scores were analysed, it is seen that there is significant difference in third-party disability scores of the two groups. Conclusion: Findings enhances mothers of children with hearing aids report greater third-party disability as compared to mothers of children using unilateral cochlear implant. Implication: The study included only mothers and a limited number of them, hence generalizing the findings to a larger population may not be appropriate.

Third party disability of family members of adults with dysphagia.

Third-party disability (TPD) has been studied in multiple patients including those with aphasia and hearing loss. Only one study has been done in relation to caregivers of adults with dysphagia. Third-party disability has been analysed using the International Classification of Function and Disability (ICF) framework. This study, therefore, used the ICF model to explore TPD of caregivers of adults with dysphagia for the context of Johannesburg in South Africa. To describe how caregivers experience TPD when caring for adults with a dysphagia in Johannesburg. Data were collected from five primary adult caregivers, who were all family members, from government clinics in Johannesburg. This article reports the findings from the interviews that were analysed thematically using a top-down analysis approach. Caregivers experienced challenges related to TPD mostly related to difficulties of being able to do activities of daily living for themselves, their household chores and attending social engagements. The use of body structure and function from the ICF model was not overtly applicable to the caregiver population. A new visual representation has been suggested to highlight the key themes to augment the social and psychological changes as seen on the ICF framework and demonstrated the specific interaction that these factors had on one another. Third-party disability is present in caregivers of patients with dysphagia. Healthcare workers need to be aware of the impact that this can have when preparing home management strategies. This newly devised representation can assist in creating a locally relevant patient-centred care approach but requires future input. This article has provided greater insight into TPD in caregivers of adult patients with dysphagia in an urban African context. It has led to new information that can be used as an adjunct to the ICF model when understanding this phenomenon.

Comparison of third-party disability between normal hearing siblings of children using hearing aids and those using cochlear implants

Purpose: Historically, research tends to focus on the experiences of deaf children and the difficulties faced, as well as the difficulties their parents endure. Less attention has been focused on siblings of children with hearing impairment (CWHI). This study aimed to compare the Third-Party Disability between normal hearing siblings of children using hearing aids (HAs) with those using cochlear implants (CI). The objective was to develop International Classification of Functioning, Disability and Health (ICF) based-tools across different domains and categories that describe third-party disability in siblings of children with hearing impairment. Method: 45 Normal Hearing Older Siblings (NHOS) from the two groups of children with hearing impairment using HAs and CI participated in the study. A tool was developed and mapped onto ICF components of Activities and Participation and Environmental factors. The developed tool consisting of 43-items across six-domains was administered through interviews, independent of the sibling. Frequency distribution and descriptive statistics were obtained. Shapiro-Wilk test was performed to assess normality of the distribution. Mann Whitney U test was administered to compare the domain-wise distributions for the two groups. Results: NHOS of CWHI using HAs perceive greater third-party disability as compared to the NHOS of CWHI using unilateral CI across all the six domains included in the study. The differences were striking in the domain of communication, interpersonal interaction and relationship, support and relationship. There were differences across the other three domains which were not found to be statistically significant. Conclusion: Hearing loss is a disabling condition that not only effects the individual, but is an experience shared by immediate family members including siblings. The extent of third-party disability in NHOS is influenced by the hearing device. This study has provided insights into the difficulties faced by normal hearing siblings of children with hearing impairment. Implication: Utilization of an ICF-based tool has provided an idea about the specific domains(s) in which they perceive maximum difficulties, which will help clinicians counsel parents, focusing not only on the needs and issues of the CWHI but also the hearing siblings. Keywords: children with hearing aids, children with cochlear implants, normal hearing siblings

Third-party disability in cochlear implant users

Objective To date, auditory rehabilitation mainly focuses on the person with hearing impairment (PHI). This study aimed to analyse the burden of hearing loss on significant others (SOs), and to explore the impact of contextual and mediating psychosocial co-factors and auditory rehabilitation by cochlear implantation (CI). Design and study sample Third-party disability (SOS-HEAR) and quality of life (Nijmegen Cochlear Implant Questionnaire) were evaluated in 41 PHI scheduled for CI surgery and their close partners pre- and 6-month post-implantation. Further, age, hearing status, educational level, depressive symptoms (GDS-15), coping strategies (Brief-COPE), resilience (RS-13), stress (PSQ) of SOs and PHI were studied. Results Hearing loss imposes a burden on SOs, particularly in relation to changes in communication and socialisation. Third-party disability was higher in SOs of PHI with lower educational background (p = 0.04) and of advanced age (p = 0.008). Hearing status of SOs negatively correlated with SOS-HEAR (p = 0.04). After CI, quality of life of PHI and third-party disability of SOs improved (p < 0.001), except in relationship changes. SOs with higher pre-operative burden also experienced more third-party disability afterwards (p ≤ 0.003). Conclusion Audiological rehabilitation should expand to include SOs in the rehabilitation process, as the burden experienced by SOs might persist even after CI.

“It’s improved the whole lifestyle”: Exploring the family perspective of participation in a Gavel Club for people with aphasia

Purpose: Aphasia impacts not just the individual with aphasia, but also their family members and friends. Known as third-party disability, it is largely hidden but can be as pervasive as aphasia itself. Gavel Clubs are a Toastmasters International-affiliated group where members participate in public-speaking tasks. Participation has been associated with improvements in quality-of-life and communication confidence but the extent to which it can impact family members of people with aphasia is not yet known. This study explored family member perspectives of participation in a Gavel Club for people with aphasia, to reveal any benefits or challenges perceived by family members and/or close friends.Methods: Semi-structured interviews were undertaken with 13 family members or close friends of people with aphasia who regularly participated in a weekly Gavel Club. The interviews were analysed using thematic analysis.Results: Three themes were identified: (1) Something to do, (2) Sense of community and (3) I can see great improvements, along with two subthemes (i) This is not just us and (ii) Support of knowing other people go through it. The themes reflected a largely positive experience of Gavel Club participation as perceived by family members. The theme names were derived from quotes from the participants.Conclusions: Regular participation in a Gavel Club for people with aphasia has a positive impact beyond just the person with aphasia, extending to their family members and close friends. This impact can be direct, if the family members themselves participate, or indirect, through the perceived benefits for the person with aphasia.

Accessing information and adapting to the role of care partner for stroke survivors with aphasia during the early Covid-19 pandemic

ABSTRACT Background Spouses, family members, and close friends of stroke survivors with aphasia are often inadequately prepared to transition into the role of care partner and are consequently at risk for third-party disability. Timely, appropriate informational support may help to mitigate negative effects of caring for someone with aphasia. Aims To explore how 11 care partners accessed information and adapted to the caregiver role at different phases of recovery during the early Covid-19 pandemic. Methods and Procedures Care partners of stroke survivors with aphasia participated in up to five individual semi-structured interviews while their loved one was in acute care through six months post-hospital discharge. The interviews were audio-recorded and transcribed. Transcripts were analysed using a descriptive coding process. Codes were grouped together into categories, and themes were identified from observed patterns in the data. Outcomes and Results There were 11 relevant key themes, including how care partners learn about stroke and aphasia (or not), receive information about their loved one, find alternative ways to communicate, prepare for the unknown, long for some type of check-in, desire care coordination, appreciate family support, and adjust to living with aphasia in the long-term. Conclusions The Covid-19 pandemic highlighted inconsistencies in care partner involvement during stroke rehabilitation. Families navigated stroke and aphasia recovery with varying information from the healthcare team and the pandemic impacted therapy coordination, family support, and access to respite care. Our work highlights several opportunities for improvement in care partner inclusion and indicates a need to develop tailored interventions for timely informational support.

Integrating Family-Centered Care Into Chronic Dysphagia Management: A Tutorial

Purpose: Chronic illnesses and sources of disability, such as dysphagia, are experienced by the entire family system. A narrow focus on impairment-level treatment cannot account for the often-dramatic shift in biopsychosocial functioning that is experienced by both the individual with dysphagia and their family members. To maximize treatment effectiveness, it is therefore necessary to focus more holistically on family resilience and adaptation. Drawing from the principles of family systems theory and the biopsychosocial–spiritual framework, this tutorial explores the application of family-centered care models to chronic dysphagia management. Using a case study to illustrate dysphagia's impact on family caregivers, we suggest a number of opportunities for speech-language pathologists to appropriately engage in family-centered care. Conclusions: Clinicians need to recognize that chronic dysphagia's widespread consequences necessitate the integration of the family into intervention plans. This requires a better understanding of family dynamics, particularly as they relate to the medical condition. As part of the management process, clinicians should consider explicitly inquiring about specific sources of support the family may require and make referrals to other professionals as needed. They should also consider implementing strategies to support the family into intervention in a way that minimizes burden and respects their capabilities. It is only through a more family-centered care approach that clinicians will be able to reduce the impacts of third-party disability and improve the lives of patients and their families.

The Effects of Tinnitus on Significant Others

Although chronic conditions could cause third-party disability for significant others (SOs), little is known regarding the impact of tinnitus on SO. This study aimed to identify the effects of tinnitus on SOs. SOs of individuals with tinnitus were invited to participate in this study. SOs completed three open-ended questions focusing on the effects of tinnitus. Individuals with tinnitus completed the Tinnitus Functional Index as a self-reported measure of tinnitus severity. A mixed-methods analysis approach was undertaken. Of the 156 SOs responding, 127 (85%) reported that tinnitus impacted them. The impact surrounded sound adjustments, activity limitations, additional demands, emotional toll, and helplessness. Tinnitus negatively affected the relationship for 92 (58%) due to communication frustrations and growing apart. When asked if tinnitus had any positive effects, 64 (47%) SOs reported positive lifestyle adaptions, personal development, health awareness, and a changed outlook. There was no association between the level of tinnitus severity and SOs reporting that tinnitus had an impact on them individually, their relationships, or those reporting positive experiences. The study highlighted the third-party disability many SOs of individuals with tinnitus experience. The results indicate that SOs may benefit from a shared intervention to help mitigate the negative effects through a better understanding of tinnitus.

Prognostication in Poststroke Aphasia: Perspectives of Significant Others of People With Aphasia on Receiving Information About Recovery.

Knowing what to expect poststroke is important for many significant others of people with aphasia, yet an understanding of their perceptions and preferences in receiving prognostic information is limited. This knowledge is needed to inform the formulation and delivery of aphasia prognoses as conversations about prognosis can be harmful or helpful depending on their alignment with key stakeholder perspectives. Our preliminary study sought insight into the perspectives of significant others of people with aphasia on receiving prognostic information, with an aim toward informing evidence-based practice in aphasia prognostication. We interviewed seven significant others of people with aphasia, 3-12 months poststroke. The interviews were semistructured, conducted one-to-one, and analyzed qualitatively using reflexive thematic analysis. Five themes were drawn from the interviews: (a) You don't know what you don't know. (b) Having them alive is the best you can ask for. (c) Recovery in the eye of the beholder. (d) Outcomes don't matter unless they help me help them. (e) It's my prognosis too if I'm living with aphasia. A significant other's prognosis-related perceptions and preferences are products of their poststroke reality and may inadvertently shape that of the person with aphasia. In order to facilitate recovery, prognostication practices need to consider the needs of significant others both as providers of care and as requiring care themselves for their first-hand experiences of third-party disability.

Development and psychometric validation of a questionnaire assessing the impact of tinnitus on significant others

IntroductionDespite evidence showing that tinnitus can have a detrimental impact on significant others (SOs), no standardized self-reported measure is currently available that specifically assesses the presence of third-party disability for tinnitus. The aim of this study was to develop and assess the psychometric properties of a newly developed self-reported measure for SOs of tinnitus and assess how scores could be meaningfully interpreted. MethodsThe research consisted of two phases. During Phase I, the Consequences of Tinnitus on Significant Others Questionnaire (CTSOQ) was developed using the The COnsensus-based Standards for the selection of health Measurement INstruments (COSMIN) guidance. Phase II included the assessment of psychometric properties of the CTSOQ including the construct validity, internal consistency, interpretability, and responsiveness. Pairs of 194 individuals with tinnitus and their SOs completed a series of online questionnaires. SOs completed the CTSOQ measure while individuals with tinnitus completed measures related to tinnitus distress, anxiety, depression, insomnia, and quality of life. ResultsA 25 item CTSOQ was developed using a formative model. The questionnaire validation process indicated good psychometric properties with an internal consistency of 0.93 and inter-item correlation of 0.60. Support was found for the construct and discriminative validity of the measure. Floor and ceiling effects were negligible. Scores can be meaningfully interpreted to indicate mild, significant, or severe effect of tinnitus on SOs. The questionnaire was also found to be responsive to treatment-related changes. ConclusionsThe CTSOQ was found to have sufficient measurement properties suggesting that it is a suitable measure of third-party disability for SOs of individuals with tinnitus. Further research should be initiated to measure face validity and what scores reflect clinically meaningful change.

Effectiveness of a web-based SUpport PRogramme (SUPR) for communication partners of persons with hearing loss: results of a two-arm, cluster randomised controlled trial and process evaluation

Objectives To examine the effects of web-based SUpport PRogram (SUPR) for communication partners (CPs) of persons with hearing loss (PHLs) in a HA dispensing setting. Design Cluster randomised controlled trial (cRCT) with two arms (SUPR: Booklet, online videos; care as usual: no support) plus process evaluation. Measurements: baseline, and immediately-, six, and 12 months post-intervention. Outcomes: Significant Other Scale for Hearing Disability (SOS-HEAR), International Outcome Inventory for HAs/Alternative Interventions for Significant Others (IOI-HA/AI-SO). Process evaluation: dose-received, satisfaction, and benefit. Study sample The cRCT included 73 (SUPR) and 57 (care as usual) CPs. In the process evaluation study, 41 CPs (SUPR) participated. Results There were no significant effects of SUPR for third-party disability (SOS-HEAR), the proxy report (IOI-HA-SO item “use”), and third-party disability (IOI-HA-SO items “satisfaction”, and “quality of life”). SUPR-videos were watched by 15-22% of the CPs. SUPR materials were rated as moderately beneficial and useful. Conclusions Low baseline disability (floor effect) and low intervention dose-received may explain the findings. Directly targeting CPs rather than via their PHLs and providing intervention materials specifically for CPs may improve their engagement and contribute to SUPR’s value supplementary to standard HA care.

Third-party disability in ongoing vestibular disorders through the lens of the ICF framework

Objective To identify presence and nature of Third-Party Disability experienced by Significant Others (SOs) of people with ongoing vestibular symptoms using the World Health Organisation International Classification of Functioning, Disability and Health (WHO-ICF) framework. Design Qualitative semi-structured interviews were conducted and analysed by mapping transcripts to the WHO-ICF framework. Study sample Ten SOs of people with ongoing vestibular symptoms were interviewed. Maximum variation sampling was used. Results Data mapped to 5 codes in the body functions component of the ICF, highlighting psychological impact on the SO and a broad range of negative emotions; 28 codes in the activities and participations component, showing impaired ability across several areas of the SO’s life including social life, communication, general tasks and maintaining domestic balance; and 19 codes in the environmental factors component, highlighting the importance of supportive relationships and functioning health systems. Conclusions Third-Party Disability was identified, including psychological impacts on the SO, interruption to their daily lives and increased domestic responsibility. Health professionals may lessen disability by encouraging support networks and practicing family-centred care.

Beyond the Patient: A Mixed-Methods Inquiry Into Family Members' Involvement in the Treatment of Parkinson's Disease to Target Third-Party Disability.

Purpose Family members of people with Parkinson's disease (PD) may experience third-party disability, manifesting as difficulty managing communication breakdowns and changed relationships influenced by communication disorders. This study examined family involvement in therapy to address third-party disability from the perspective of family members of people with PD and speech-language pathologists (SLPs). Method A mixed-methods design was used with two phases of data collection. In Phase 1 qualitative interviews, nine family members shared their perspectives about their involvement in therapy. In Phase 2, a survey was developed from Phase 1 data to gather data from SLPs (N = 110) on their clinical practices involving family members. Results Family members and SLPs agreed that when family were involved in therapy, it was primarily to support therapy exercises for the person with PD. Many SLPs reported providing supportive activities for family members. However, qualitative data from family members suggested that the limited involvement they had in therapy did not sufficiently meet their unique needs resulting from communication changes with the person with PD and other related challenges. Constraints influencing family member involvement included insurance billing regulations, privacy laws for patients, and family members' availability. Conclusions While some families and SLPs reported efforts to specifically include families and address their needs in therapy, these practices were inconsistent and, from families' perspectives, insufficient to meet their own needs. Future research should consider family-centered approaches that involve family members in speech-language therapy to enhance their daily lives, along with persons with PD.

The use of diet modifications and third-party disability in adult dysphagia: The unforeseen burden of caregivers in an economically developing country.

BackgroundOne of the interventions for dysphagia is diet modifications, involving a variety of resources and consumables. In South Africa, where 49% of the population live below the poverty line, the necessities for it are not always feasible for the patient and their family. This coupled with the responsibility of caring for a loved one with disability can culminate into caregivers experiencing third-party disability (TPD).ObjectiveTo describe the experiences of TPD of caregivers when implementing dysphagia management strategies at home within an economically developing country context.MethodsThis was a qualitative study using phenomenological principles. Data were collected using a semi-structured self-developed interview tool at three tertiary level public sector hospitals. Seven participants and six caregivers were interviewed. Rigour was obtained through credibility, triangulation, transferability, dependability and confirmability. The data were analysed using a thematic content analysis technique following a top-down approach to coding.ResultsThe use of diet modification is an appropriate management strategy if the patients’ access and contextual limitations have been taken into consideration. It was evident that the caregivers had multiple International Classification of Functioning, Disability and Health domains affected, which restricted their daily functioning including activities, participation and environmental and personal factors.ConclusionThe management of dysphagia needs to be family centred and the caregiver’s role and needs have to be considered by all team members when determining long-term management plans. The specific area of how the caregiver’s quality of life was experienced also required further exploration.

Dysphagia-Related Caregiver Burden: Moving Beyond the Physiological Impairment

PurposeThe biopsychosocial ramifications of dysphagia are widespread. However, its influence on informal caregivers and families is often overlooked. Ultimately, the health and well-being of an entire family is central to care provision. This tutorial introduces readers to the current literature on dysphagia-related caregiver burden and third-party disability, illustrates the consequences of such burden on both caregivers and patients, and suggests strategies for better supporting patients' informal caregivers.ConclusionsIt is essential that speech-language pathologists recognize that the consequences of dysphagia are not limited to the impairment itself and acknowledge dysphagia's substantial impact on the entire family system. More general health care literature suggests that asking caregivers individual questions, modifying the language used to talk with them, providing them with targeted education and resources, and organizing support groups may all be beneficial for increased perceived support and self-efficacy. Ultimately, in order to best meet the needs of our patients with dysphagia, we must also better meet the needs of their families and other informal caregivers.