Nerina Scarinci

The effect of hearing impairment in older people on the spouse

The prevalence of hearing impairment (HI) in older people and its detrimental effects on their quality of life and well-being is well known. To date however, there have been few studies investigating the impact on the persons spouse. To investigate this topic, a qualitative study consisting of in-depth interviews was conducted with five female and five male spouses of older people with HI. The aims of the study were: (1) to describe the spouses’ experiences of living with someone with a HI; (2) to describe the effect of HI on the couples’ communication and relationship; and (3) to identify coping strategies adopted by spouses. An interpretive analysis revealed four themes that described the experience of spouses of older people with HI: (1) the broad ranging effects of the HI on the spouses’ everyday lives; (2) the spouses’ need to constantly adapt to their partners’ HI; (3) the effect of acceptance of the HI on the spouse; and (4) the impact of ageing and retirement. Spouses in this study experienced a wide range of effects as a result of their partners’ HI. Implications for audiological rehabilitation are discussed.

Measuring outcomes of a communication program for older people with hearing impairment using the International Outcome Inventory.

The main objective of this study was to describe the outcomes of a communication education program for older people with hearing impairment using the International Outcome Inventory – Alternative Interventions (IOI-AI) and the version for significant others (IOI-AI-SO). Ninety-six people aged 58 to 94 years participated in an interactive group education program for two hours per week for five weeks. The IOI-AI was administered at one to two weeks after the last educational session and 29 significant others also completed the IOI-AI-SO at this time. Overall, positive results were obtained using both questionnaires, and satisfaction with the program was particularly high. Findings also compared favourably to reports of outcomes for other audiological interventions (i.e., another communication training program and hearing aid fitting). Principal components analysis of the IOI-AI revealed a somewhat different factor structure than the original IOI-HA. The two versions of the IOI applied in this study are recommended as simple and effective measures of the outcomes of alternative interventions.

The effect of hearing impairment in older people on the spouse: Development and psychometric testing of The Significant Other Scale for Hearing Disability (SOS-HEAR)

The effects of hearing impairment on the person with the impairment and on their significant others are pervasive and affect the quality of life for all involved. The effect of hearing impairment on significant others is known as a third-party disability. This study aimed to develop and psychometrically test a scale to measure the third-party disability experienced by spouses of older people with hearing impairment. The Significant Other Scale for Hearing Disability (SOS-HEAR) was based on results of a previous qualitative study investigating the effect of hearing impairment on a spouses everyday life. Psychometric testing with 100 spouses was conducted using item analysis, Cronbachs alpha, factor analysis, and test-retest reliability. Principal components analysis identified six key underlying factors. A combined set of 27 items was found to be reliable (alpha = 0.94), with weighted kappa for items ranging from fair to very good. The SOS-HEAR is a brief, easy to administer instrument that has evidence of reliability and validity. The SOS-HEAR could serve as a means of identifying spouses of older people with hearing impairment in need of intervention, directed towards either the couple or the spouse alone.

The lived experience of dysphagia following non-surgical treatment for head and neck cancer

Abstract The prevalence and severity of dysphagia in people treated non-surgically for primary head and neck cancer (HNC) is well documented. However, few studies have looked beyond the physiological impairment to explore the lived experience of dysphagia in the post-treatment period of HNC. The current study adopted a person-centred, qualitative approach to describe the experiences of people living with dysphagia in the months and years following non-surgical treatment for HNC. Using maximum variation sampling, 24 participants who had undergone radiotherapy treatment for HNC were recruited. Individual interviews were conducted to explore the impact of dysphagia on participants’ everyday lives. The themes identified included: (1) physical changes related to swallowing; (2) emotions evoked by living with dysphagia; (3) altered perceptions and changes in appreciation of food; and (4) personal and lifestyle impacts. The data revealed the breadth and significance of the impact of dysphagia on the lives of people treated curatively for HNC. Assessment and management in the post-treatment period must be sufficiently holistic to address both the changing physical states and the psychosocial needs of people with dysphagia following HNC. Rehabilitation services which focus only on impairment-based management will fail to fully meet the support needs of this clinical population.

Which outcomes are most important to people with aphasia and their families? an international nominal group technique study framed within the ICF

Abstract Purpose: To identify important treatment outcomes from the perspective of people with aphasia and their families using the ICF as a frame of reference. Methods: The nominal group technique was used with people with aphasia and their family members in seven countries to identify and rank important treatment outcomes from aphasia rehabilitation. People with aphasia identified outcomes for themselves; and family members identified outcomes for themselves and for the person with aphasia. Outcomes were analysed using qualitative content analysis and ICF linking. Results: A total of 39 people with aphasia and 29 family members participated in one of 16 nominal groups. Inductive qualitative content analysis revealed the following six themes: (1) Improved communication; (2) Increased life participation; (3) Changed attitudes through increased awareness and education about aphasia; (4) Recovered normality; (5) Improved physical and emotional well-being; and (6) Improved health (and support) services. Prioritized outcomes for both participant groups linked to all ICF components; primary activity/participation (39%) and body functions (36%) for people with aphasia, and activity/participation (49%) and environmental factors (28%) for family members. Outcomes prioritized by family members relating to the person with aphasia, primarily linked to body functions (60%). Conclusions: People with aphasia and their families identified treatment outcomes which span all components of the ICF. This has implications for research outcome measurement and clinical service provision which currently focuses on the measurement of body function outcomes. The wide range of desired outcomes generated by both people with aphasia and their family members, highlights the importance of collaborative goal setting within a family-centred approach to rehabilitation. These results will be combined with other stakeholder perspectives to establish a core outcome set for aphasia treatment research. Implications for Rehabilitation Important outcomes for people with aphasia and their families span all components of the ICF. The relevancy and translation of research findings may be increased by measuring and reporting research outcomes which are important to people living with aphasia. The results of this study indicate that important treatment outcomes for people living with aphasia most frequently link to the activity/participation and body function components of the ICF. The outcomes identified in this study suggest a broad role for clinicians working in aphasia rehabilitation. The categories of identified outcomes may be used clinically as a starting point in goal-setting discussions with clients and their families.

Factors associated with third-party disability in spouses of older people with hearing impairment.

Objectives: This study had two aims: (1) to describe the extent of third-party disability in a sample of spouses of older people with hearing impairment, and (2) to investigate factors associated with third-party hearing disability. Third-party disability is defined as the disability and functioning of family members as a result of the health condition of their significant other. Design: One hundred older spouses who had partners with hearing impairment participated. All assessments were self-reported, and included a set of measures (the 36-item Significant Other Scale for Hearing Disability, SOS-HEAR; the Relationship Assessment Scale; and the Significant Other Assessment of Communication) administered to the target population of normally hearing older spouses, and those administered to the hearing impaired partners of the spouses in the study (the Self Assessment of Communication). To address the first aim, descriptive statistics were used to describe the extent of third-party hearing disability in the spouses. To address the second aim, binary logistic regression analysis was used to examine factors associated with third-party hearing disability. Factors investigated were focused on the spouse (e.g., spouse perception of relationship satisfaction) and on the partners with hearing impairment (e.g., partners’ level of hearing impairment). Results: Most spouses (98%) reported some degree of third-party hearing disability on at least one item of the SOS-HEAR, with the majority reporting a mild disability. Three risk factors were found to be significantly associated with severe or complete third-party disability: lower relationship satisfaction as reported by the spouse (Relationship Assessment Scale), spousal age difference, and spouse perception of their partner’s hearing disability (Significant Other Assessment of Communication). Partners’ level of hearing impairment, self-reported hearing disability (Self Assessment of Communication), use of hearing aids, and spouse satisfaction that their hearing-impaired partner had done all they could to help with hearing were not associated with third-party disability. Conclusions: This research study shows that spouses of older people with hearing impairment experience third-party disability as a result of their partners’ hearing impairment and that the SOS-HEAR could be used to identify the nature of the disability. The three factors found to be associated with third-party disability could identify spouses at risk of third-party disability related to hearing impairment and form the basis of an intervention.

Carers’ Experiences of Dysphagia in People Treated for Head and Neck Cancer: A Qualitative Study

The implication of dysphagia for people treated nonsurgically for head and neck cancer (HNC) and its detrimental effects on functioning and quality of life has been well documented. To date, however, there has been a paucity of research on the effects of dysphagia following HNC on carers, independent of the consequences of a gastrostomy. The objective of this qualitative study was to report on the experiences of carers of people with dysphagia (non-gastrostomy dependent) following nonsurgical treatment for HNC and to identify the support needs of this group. A purposive, maximum-variation sampling technique was adopted to recruit 12 carers of people treated curatively for HNC since 2007. Each participated in an in-depth interview, detailing their experience of caring for someone with dysphagia and the associated impact on their life. Thematic analysis was adopted to search the transcripts for key phases and themes that emerged from the discussions. Analysis of the transcripts revealed four themes: (1) dysphagia disrupts daily life, (2) carers make adjustments to adapt to their partner’s dysphagia, (3) the disconnect between carers’ expectations and the reality of dysphagia, and (4) experiences of dysphagia-related services and informal supports. Carers generally felt ill-prepared for their role in dysphagia management. The qualitative methodology successfully described the impact of dysphagia on the everyday lives of carers, particularly in regard to meal preparation, social events, and family lifestyle. Clinicians should provide adequate and timely training and support to carers and view carers as copartners in dysphagia management.

A qualitative investigation into third-party functioning and third-party disability in aphasia: Positive and negative experiences of family members of people with aphasia

Background: In the International Classification of Functioning, Disability and Health (ICF), the World Health Organization introduces the term “third-party disability” and identifies the need for further investigation into family members’ Functioning and Disability in relation to a significant others health condition. Aims: This qualitative investigation represents the first phase of a mixed methods study to develop a tool for measuring third-party functioning and third-party disability in aphasia. The aims of this phase of the study were to explore: (1) the positive aphasia-related changes associated with third-party functioning, and; (2) the negative aphasia-related changes associated with third-party disability, as experienced by family members of adults with aphasia post-stroke. Methods & Procedures: This study used an inductive design with a qualitative descriptive research strategy to explore the lived experience of having a relative with aphasia. Twenty family members (e.g., spouses, parents, children, siblings, etc.) of individuals with aphasia participated in individual in-depth semi-structured interviews. The interviews were analysed using qualitative content analysis. Outcomes & Results: Analysis revealed five categories of positive aphasia-related changes associated with third-party functioning: (1) emotions; (2) communication; (3) relationships; (4) recreational activities and social life; and (5) paid/volunteer work or education. In addition, seven categories of negative aphasia-related changes associated with third-party disability were revealed: (1) physical, mental, and emotional health; (2) communication; (3) relationships; (4) recreational activities and social life; (5) paid/volunteer work or education; (6) domestic and caregiving responsibilities; and (7) finances. Conclusions: Interpreted within the framework of the ICF, this study showed how the pervasive effects of aphasia are associated with changes in Functioning and Disability in family members, providing a holistic description of family members’ experience using the standardised language of the ICF. Clinically, these results emphasise the importance of recognising the positive and negative outcomes for close family members in the development of a rehabilitation plan for the family to address their experience of third-party disability.

Survivors' experiences of dysphagia-related services following head and neck cancer: Implications for clinical practice

BACKGROUND It is known that people with dysphagia experience a number of negative consequences as a result of their swallowing difficulties following head and neck cancer management (HNC). However their perceptions and experiences of adjusting to dysphagia in the post-treatment phase, and the services received to assist this process, has not been studied. AIMS To explore the lived experience of people with dysphagia following non-surgical treatment for HNC and examine their perceptions of service needs. METHODS & PROCEDURES A demographically diverse group of 24 people who had received radiotherapy for HNC in the past five years, and experienced dysphagia as a result of treatment, were recruited using maximum variation sampling. Each participant took part in a semi-structured, in-depth interview, where they reflected on their adjustment to, and recovery from dysphagia following treatment for HNC, as well as the dysphagia-related services they received during their treatment. Thematic analysis was used to analyse the transcripts and to identify key themes that emerged from the data. RESULTS The main integrative theme was the desire for ongoing access to dysphagia-related services in order to adequately manage dysphagia. Within this integrative theme were five additional themes including: (1) entering the unknown: life after treatment for HNC; (2) making practical adjustments to live with dysphagia; (3) making emotional adjustments to live with dysphagia; (4) accessing support outside the hospital services; and (5) perceptions of dysphagia-related services. CONCLUSIONS & IMPLICATIONS The interviews revealed the need for both greater access to services and a desire for services which address the multitude of issues faced by people with dysphagia following HNC in the post-treatment period. Speech and language therapists managing this caseload need to ensure post-treatment services are available and address not only the physical but also the emotional and psychosocial changes impacting people with dysphagia in order to assist them to adjust to, and live successfully with dysphagia. Further research should be conducted to support the development of innovative services and to highlight dysphagia-related survivorship issues to governing bodies/policy makers.

Describing the impact of aphasia on close family members using the ICF framework

Abstract Purpose: Aphasia is a communication disorder associated with impairments in spoken language, understanding, reading and writing that impacts upon daily activities, participation in society and the quality of life of those with the condition and their family members. Despite existing literature demonstrating the pervasive and significant effects of aphasia on family members, rehabilitation programming, policy and funding are not well developed. The aim of this qualitative study was to describe the impact of aphasia on family members in the context of changes to their functioning and disability using the framework of the International Classification of Functioning, Disability and Health (ICF). Application of ICF concept of disability or “third-party disability” to family members of people with a health condition is discussed. Method: Twenty family members participated in individual in-depth semi-structured interviews. Interviews were analyzed using qualitative content analysis. Research codes generated were subsequently mapped to the ICF. Results: The results of this study showed that family members experienced positive, neutral and/or negative changes to their body functions and activities and participation due to their significant other’s aphasia. Moreover, some family members attributed the development of a health condition or exacerbation of an existing health condition to the aphasia. Conclusion: Interpreted within the framework of the ICF, the results of this qualitative study reveal that family members of people with aphasia experience changes to their functioning and disability, known as “third-party functioning and disability”, as a consequence of the health condition of a significant other. Implications for Rehabilitation Use of the ICF framework to describe the effects of aphasia on family members may improve rehabilitation programming, policy and funding for family-centred rehabilitation. Aphasia can lead to the development or exacerbation of health conditions (e.g. anxiety) in family members. In ICF terminology, negative changes (e.g. worry, increased duties and financial strain) that family members experience due to aphasia are called third-party disability and may result in impairments, activity limitations and participation restrictions. Similarly, positive changes (e.g. appreciation, learning and increased tolerance) that family members experience may be called third-party functioning and classified with the ICF as changes to their body functioning, activities and participation.