Validation of the Hearing and Functioning in
Everyday life Questionnaire (HFEQ) in an
Indian context.
Authors: Rebecka Enarsson and Moa-Lill Häggqvist
Spring term of 2020
Graduation thesis: Bachelor’s degree 15 hp Main: Hearing science
Program for Audiology
The Institution for health sciences, Örebro University.
Mentor: Elin Karlsson, Doctorate at Audiologic Research Centre, Örebro University Hospital and Örebro University.
2 Abstract
Background: Hearing loss is a frequent condition internationally and results in several
negative consequences for the individual in different ways such as biological, psychosocial and health perspectives. To facilitate this, the patients undergo hearing rehabilitation. The questionnaire Hearing and Functioning in Everyday life Questionnaire (HFEQ) has been constructed on the base of the International Classification of Functioning, Disability and Health (ICF) Brief Core Set. HFEQ is constructed to function on an international level as a tool for hearing rehabilitation and can also be used for research purposes.
Purpose: The aim of the present study is to investigate the content validity of the English
version of the self-assessment instrument HFEQ in an Indian context.
Method: The present study is a qualitative focus group study. There are three age
categories: 18-40, 41-65, ≥ 66 years old and in total there were 17 participants. The material gathered from focus groups was transcribed, analyzed and organized into themes.
Results: The interviews resulted in eight themes: 1) Introduction 2) Rating 3) Time 4) Adding
information 5) Good item 6) Changing 7) Irrelevant 8) Not applicable in relation to the content quality. The themes showed that a majority of the items in the questionnaire had good
content validity.
Conclusion: This study shows that the questionnaire HFEQ contains good content validity tough most of the question the participant thought were good. Some of the questions needs more clarity like the question about eyesight.
Keywords: Outcome measures, HFEQ, Content validation, Questionnaire, Person centered audiological rehabilitation, International Classification of Functioning, ICF, Disability and Health, psychometrics, validation, Hearing and Functioning in Everyday life Questionnaire.
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Preface
We would like to extend our deepest gratitude to those who made this study possible.
To Elin Karlsson, our supervisor and a great support in crisis as well as in this project. To Dr Krishna Yerraguntla, Bhargav P. G and Sunila John at Speech and Hearing at Manipal Academy for Higher Education for all your help and care in India.
To the faculty at Örebro University who strived so hard to enable our exchange to India. To SIDA and the Minor Field Study scholarship that we received.
To our families, without whom we could not have made it this far.
4 1. Introduction ... 6 2. Background ... 6 2.1 Agenda 2030 ... 6 2.2 ICF ... 7 2.3 Development of HFEQ ... 8
2.4 Rational for the study ... 8
3. Purpose ... 9
3.1 Research questions ... 9
4. Methods ... 9
4.1 Participants ... 9
4.2 Data collection process ... 10
4.2.1 Initial literature search ... 10
4.2.2 Focus group interviews ... 10
4.3 Material and equipment ... 11
4.4 Analysis method ... 11
4.5 Methodological considerations ... 12
4.6 Ethical considerations ... 12
5. Result ... 13
5.1 Introduction to the questionnaire ... 13
5.2 Rating ... 14 5.3 Time ... 14 5.4 Adding information ... 14 5.5 Good item... 15 5.6 Changing ... 16 5.7 Irrelevant ... 17 5.8 Not applicable... 17 6. Discussion ... 17 6.1 Result discussion ... 17
6.1.1 Introduction to the questionnaire... 18
6.1.2 Rating ... 18
6.1.3 Time... 19
6.1.4 Adding information ... 19
6.1.5 Good item ... 21
5 6.1.7 Irrelevant ... 22 6.1.8 Not applicable ... 22 6.2 Method discussion ... 23 6.2.1 Participants ... 23 6.2.2 Data collection ... 24
6.2.3 Material and equipment ... 25
6.2.4 Methodological considerations ... 25
6.2.5 Ethical considerations ... 26
6.2.6 Further research ... 26
7. Conclusion ... 26
References ... 28
Attachment 1: Demographic information ... 30
Attachment 2: Interview guide... 31
Attachment 3: Analysis scheme ... 32
Attachment 4: Ethical approval ... 40
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1. Introduction
The World Health Organization (WHO, 2018) estimates that more than 400 million adults have hearing loss (HL). HL may result in several negative consequences for the individual in several perspectives including social, psychological and biological functions as well as health. Some consequences of HL may for example be, reduced ability to discriminate sounds, localize sounds, detect and understand speech and in the long term the processing of sounds. These aspects make it hard to take part in
conversations and social activities, resulting in reduced social engagement, isolation, and poorer health (Stephens & Kramer, 2010). This will for example make social events such as dinners and parties difficult for people with HL due to multiple sound sources and over all difficult to engage in conversations (Tye-Murray, 2015). Studies have also shown that HL can lead to both
difficulties in processing sound and cognitive decline (Lin, Thorpe, Gordon-Salant & Ferrucci, 2011; Wingfield, Tun & McCoy, 2005) and increase the risk for mental illness such as depression and fatigue (Stephens & Kramer, 2010). HL is a highly prevalent health condition and thus an important public health issue (Stephens & Kramer, 2010). WHO (2001) has taken action to actively work on improving both health care and health status around the world and through Agenda 2030 strive towards 17 goals, the sustainable development goals (SDG´s) that were adopted by the United Nations in 2015. The purpose of the SDG’s of Agenda 2030 is to increase the living conditions for people all around the world and the goals concern matters of social- and societal
structures as well as protecting our environment and creating sustainable living conditions (United Nations, n.d.).
2. Background
2.1 Agenda 2030
The United Nations (UN) worldwide project Agenda 2030 strives towards reaching the SDG´s by the year 2030. This project is highly connected to two of the goals of Agenda 2030. Firstly, Goal three Good health and well-being, which is a foundation for people to get the opportunity to reach full potential in society. Goal three aims to promote investments in health care and hearing health care and the idea is that it in the long term will give back knowledge to the society. Another goal, goal ten, Reduced inequalities include actions to promote equality between different groups of people. The goal Reduced
inequalities will be important as equality is a big issue in India (UN, n.d.). India
is on the right path to reaching the goals of Agenda 2030. According to the UN (n.d.) India have set goals on a sub-national level, and the 36 entities of India all strive toward reaching the SDG´s. The progress is measured in an index with a scale of 1-100, where exceptions are being made for the goals 12 Sustainable Consumption and Production, 13 Climate Action, 14 Life Below Water and 17 Partnership due to lack of data. According to India it is estimated that the total score is 58/100 on the scale and states that they are well on their way to fulfilling the SDG’s of Agenda 2030 (UN, n.d.; SDG, 2019) On the Indian scale of rating the SDGs’ scores, there are large regional
7 Well-being, varies between 29 and 82 points. This leads to a big variation
between the regions. The variation also means that India has some areas with poorer health care which needs improvement and some areas which are closer to fulfilling goal three of Agenda 2030. In order to achieve goal three, all regions in India must achieve higher results. At the moment, when
reviewing the amount of progress towards goal three, India has achieved an average score of 61 points on the sub-national level throughout the regions. Goal ten, Reduced Inequalities, has achieved a higher score on the sub-national level and the score varies between the different regions on a scale where 19 is the lowest and 94 is the highest score which leads to an average score of 64/100 improvement across the nation (SDG India, 2019).
2.2 ICF
In 2001, WHO endorsed a system for classifying health and function, the International Classification of Functioning, Disability and Health (ICF). The classification can be used as a measurement tool and can be a foundation for measurements in terms of research and individual purposes (WHO, 2001). ICF is in turn is based on the biopsychosocial model of health, developed in order to include more than the medical issues with a patient (Engel, 1978). ICF offers a structure for reviewing a broad aspect of an individuals’
functioning and disability in relation to their health and well-being
(Tye-Murray, 2015). Classification enables a patient centered rehabilitation. Based on the ICF framework a validated version of the ICF brief core set for HL was developed. The core set includes all the important ICF categories in relation HL as seen in Figure 1. the categories of ICF are first divided into two parts: Part 1: Functioning & Disability and Part 2: Contextual factors. Within part 1 there are three components: Body functions, Body structures and Activities & participation. Within part 2 there are two components: Environmental factors and Personal factors (Granberg, Swanepoel, Englund, Möller, Danermark, 2014b). ICF Brief Core Set for HL enables the possibility to put HL in a greater context, relating HL to the individuals’ function and disability as well as contextual factors.
Figure 1 The hierarchical structure of ICF. Figure adopted form Granberg et al, 2014b.
Previously, in order to objectively evaluate audiological rehabilitation, studies have shown that there is low consensus within the field of audiology of which questionnaires to use (Granberg, Dahlström, Möller, Kähäri, Danermark, 2014a). Due to this, it is hard to compare research results. Furthermore,
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several questionnaires have a narrow approach, mostly focusing on, for example, body functions or aspects related to hearing aids (Barker, MacKenzie, Elliott & de Lusignan, 2015; Granberg et al., 2014a). For this purpose, the self-assessment questionnaire Hearing and Functioning in
Everyday life Questionnaire (HFEQ) was developed. HFEQ has a
multidimensional perspective on functioning in everyday life from a hearing perspective and was based on the categories of ICF Brief Core Set for HL (Karlsson, 2020).
2.3 Development of HFEQ
An international group of experts in the field of Audiology and/or ICF was in September 2019 invited to Örebro to develop the content and the questions for HFEQ. The group consisted of 11 delegates in total, from Canada, India, Norway, Sweden, South Africa, Switzerland and the US (Karlsson, 2020). When developing a new questionnaire, Granheim and Lundman (2004) explains the importance to investigate the validity, and one way to do this, is through investigating the content validity. Qualitative content analysis is a useful method to evaluate if the items in the questionnaire really measures the phenomenon it is supposed to measure (Bryman & Nilsson 2011., Granheim & Lundman, 2004). The process of analysing content validity is done by thoroughly reviewing the obtained material, for example audio
recorded focus groups, and transcribed material. Content validity is evaluated by interpreting information by reviewing both what is outspoken, the manifest, and what is not overtly being said, the latent content. The data collection for an international validation is now ongoing in four countries, India, South Africa, US and Canada. Coordinator is Elin Karlsson, postgraduate at Örebro university and active working at Audiological Research Centre, Örebro
University hospital (Karlsson, 2020).
The questionnaire HFEQ aims at assessing functioning in everyday life, in adult populations with all degrees of HL (Granberg et al, 2020; Karlsson, 2020). HFEQ involves 30 questions about body functions, activities, participation and environmental factors (Granberg et.al 2020). The
questionnaire include items at both an individual and a societal level and aims at embracing the psychometric aspect of HL. HFEQ is a self-assessment questionnaire and will be usable in clinical practice and in research. For clinical practice, HFEQ could be an interview guide used for discussions between the audiologist and the patient or an evaluation tool for rehabilitation interventions (Granberg et al. 2014b., Karlsson, 2020).
2.4 Rational for the study
HFEQ will, when validated, be an evidence-based self-assessment questionnaire with focus on hearing problems in everyday functioning. Such a tool does not exist in the audiological field today. This kind of questionnaire will be a tool to improve interventions, such as hearing
rehabilitation, which is an important part of sustainability in hearing health care and is also in line with Agenda 2030 (UN, n.d.; Regeringskansliet, 2017; SDG India, 2019). With the possibility to measure everyday functioning, as well as
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plan and adjust interventions for each individual, rehabilitation quality will hopefully increase patient satisfaction with the care they receive and achieve better results in the hearing rehabilitation (Tye-Murray, 2015). HFEQ also contributes with a new possibility to evaluate rehabilitation interventions, which is important in making sustainable improvements within the field of hearing rehabilitation, both on individual and group level. With patient centered audiological rehabilitation and appropriate interventions, more people are enabled to the possibility of being more active and to participate to a greater extent in society (Tye-Murray, 2015). Altogether, this would have a positive effect on individuals in their educational and working life, which according to Agenda 2030 is important in achieving sustainability. Performing the focus groups in India enables a possibility to review the questionnaire in a broader perspective than doing it mainly in western countries and Sweden.
3. Purpose
The aim of the present study is to investigate the qualitative content validity of the English version of the self-assessment instrument HFEQ in an Indian context.
3.1 Research questions
There will be three main questions in the validation of the questionnaire. What does people with HL in India think of:
1) The content of the items in HFEQ? 2) The relevance of the items in HFEQ?
3) How understandable the items of HFEQ are?
4. Methods
The current study is a qualitative focus group study, aiming at investigating the content validity of HFEQ from the context of India. The method qualitative content analysis is used in order to evaluate the participants thoughts on how the questionnaire is structured, how the understandability is and the
relevance of the items.
The current study is part of Elin Karlsson’s PhD project, which aims at validating the questionnaire HFEQ and this study will consider the specific context of India. The project of content validation of the questionnaire HFEQ is ongoing in South Africa, Canada and the US and is coordinated from Örebro University and Audiological research center, Örebro, Sweden (Karlsson, 2020).
4.1 Participants
The selection processes followed the guidelines of the project. The inclusion criteria were; Adults (≥18 years) with HL, conversant in English, and
willingness to share and discuss aspects related to the study topics. HL is in this study defined as the mean of the hearing thresholds 0,5,1,2 and 4 kHz more than 20dB in the best ear (HEAR, 1996).
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The participants in the present study were English-speaking adults with HL attending Manipal hospital for hearing rehabilitation. The sample consisted of a clinical population of people identified in hearing care at Manipal hospital. In total there were four focus group interviews involving adults with HL. The focus groups consisted of six or seven individuals. This study included 17 participants and the majority of them were men (see Table 1).
The groups were sorted according to age and were divided into the age groups: 18-40 years, which included five men, 41-65 years, which included three men and two women, 66+ years which included 7 men.
Table 1. Demographic details of the participants
4.2 Data collection process
Data collection process consists of two parts, Initial Literature search and Focus group interviews.
4.2.1 Initial literature search
Background information for this study were identified through a literature search which not going to be a part of the result but only for the authors help. The databases CINAHL, PubMed and Scopus were used with the aim of finding previous research relevant to the present study. The title of 63 articles were evaluated and 50 abstracts were read and 6 of them were selected based on their relevance to the purpose of the study. Most of the articles were read through and some of them were selected based on their relevance for this study. Literature from Manipal University of higher education and from different organization like WHO and authorities such as Datamyndigheten has also been used in the study.
4.2.2 Focus group interviews
The focus groups were conducted at Manipal College, in Manipal, Karnataka in India. The authors were taking notes and audio recorded the focus groups moderator employed at Manipal University of higher education, department of Speech and Hearing. The focus group interviews took place at the
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department of Speech and Hearing at Manipal Academy of Higher education. In total, there were 4 interviews and one or two moderators attended at every interview.
Prior to the group discussions, the participants got information about that participation in the study was voluntary and that they can cancel their participation at any time. Participants received instructions of how the discussion would proceed according to the instructions of the text in the questionnaire. If there were any items in the questionnaire about the instructions, they were answered by the moderators. Before the interview begun, all participant gave their consent to participate. They were also informed that the interview will be recorded, and consent had to be given for this as well. The focus group interviews followed the method described by Fayers and Machin (2007) which is a qualitative content analysis. The participants read and filled in the questionnaire and the demographic
questions (Attachment 1) before the discussions. The interviews followed a structured interview guide (Attachment 2) and the topics for the discussions were the specific items of the HFEQ. For each item, there were three
questions; 1) What do you think of the content of the question? 2) How relevant is the question for you? 3) How understandable is the question? To sum up the discussions, there will be two general questions; 1) What do you think about the time it took to fill in the questionnaire? 2) Is there anything you would like to add?
4.3 Material and equipment
Two audio recorders were required in this study. One owned by the authors, an Olympus VN-541PC, and one Sony Walkman E440 was acquired from Örebro University technical department. The participants were given copies of the HFEQ, concert from and demographic information as well as 21 pencils in the focus group interview.
4.4 Analysis method
To investigate if the HFEQ has a good content validity, the authors have used the method of qualitative content analysis according to Granheim and
Lundman (2004). Qualitative content analysis is used in order to examine how the participants percieve the items in the questionnaire. To find out if the questionnaire has good content validity, participants should understand the questions in relation to what they aim to measure. If the participants have other interpretations instead, it means that the item is poorly designed and lead to worse content validity.
The interviews were audio recorded and notes were made. The analysis was based on the audio-recorded material from the four focus group interviews and the notes of the authors.
All the audio recorded material was transcribed orthographically, word by word, by the authors. Parts of the focus group discussions were in Kannada, and from the recorded material, later translated by one of the moderators. All the transcribed text was analyzed by the authors using manifest content analysis meaning only the written part from the interviews were analysed (Granheim & Lundman, 2004).
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From the transcribed material, meaningful units and sentences were marked and analysed. All valuable material from the transcribing were inserted into an analysis scheme (Attachment 3). In the next step, interpretations from the meaningful units along with the information from the transcribed material were made (Granheim & Lundman, 2004). All the transcriptions were performed by one of the authors. When all the material was transcribed, the material was read through, analyzed and converted into the analysis scheme.
As part of the process of validating, the items were compared to the ICF Brief Core Set to see whether the items reflected the categories of the core set (Granberg et.al 2014b) and the ICF model (WHO, 2001). The comparison was done through comparing themes in the items of the questionnaire such as the individual and his or her participation in different environments in society. dd?
4.5 Methodological considerations
There is a possibility of a language barrier between the participants and the observers since English is a second language for both parts. This makes it more difficult in the process of interpreting and transcribing the material then would be the case if the patients used their first language who can be
Kannada and some Tamil. The translation of their first languages will be conducted by faculty members at Manipal University.
Another factor to the matter is the possibility that the participants may, as an affect of their hearing disability, have problems with their speech and further complicate the understanding during the focus groups and
transcription (Tye-Murray, 2015; WHO, 2018; Yoshinaga-Itano, Sedey, Coulter & Mehl, 1998).
The focus groups were organized in such a way that all participants could hear and be heard and to make the participants feel comfortable, the groups will be homogeneous in age to reduce some risk of individuals feeling
misplaced (Wong, 2008). 4.6 Ethical considerations
All personal data was collected and stored in accordance with the regulation of General Data Protection Regulation (GDPR) and the personal information that is used is confidential in the compilation (Datainspektionen, n.d., The
world medical association (WMA) n.d.). When this study is finished, all
information kept by the authors of this study will be deleted. If information is needed later, the project coordinator, Elin Karlsson, postgraduate at Örebro university, will store all accumulated data on a locked server owned by Region Örebro län according to GDPR. No unauthorized personnel will have access to the locked server and the data. The participants were informed about the handling of the data and informed that they can cancel their participation at any time and that their answer is then taken out of the investigation. The participants were also informed that the data only will be used for this specific research project. The participants received information about the study and gave their informed consent before the interviews were started. The form of consent included information regarding the participation
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and that their participation would not have any impacton their future hearing health care given to them (Datainspektionen, n.d.)
Since this report intended to validate a questionnaire through focus groups, there were many ethical perspectives to consider. India is a nation with great diversity and also great class distinctions. The caste system, an old Hindu tradition which organises people in hierarchical groups, reinforces the class distinctions and it is difficult for individuals to rise from the caste to which they are born into. There is a possibility that there are class differences between the participants which might go unnoticed from the observers’ point of view during the focus groups but might be obvious to the participants and the boundaries might affect the atmosphere of the room. The caste system organizes disabled people in Indian society in the lower classes and this might cause a condescending and discriminative tone towards participants if their HL is part of several disabilities (Indien, NE, n.d.; SDG India, 2019). The Swedish application for ethics was approved 180828 (DNR 2018/252). The ethical approval was made in India according to local regulations through the contact person in India, Dr Krishna Yerraguntla on the 14th of January
2020 (Attachment 4).
5. Result
The results of the study indicate that in general, the participants experience the items to be understandable and the content is experienced as meaningful to them. In total 46 meaning units were identified and condensed into ten sub-themes. In the final step of the analysis, eight themes were identified:
Introduction, System of rating, Time, Adding information, Good item,
Changing, Irrelevant and Not applicable. The results are discussed according
to theme.
5.1 Introduction to the questionnaire
Most participants thinks the introduction of the questionnaire has good quality but there are some opinions on possible alterations and a suggestion on adding an item or adding some content that is missed out in the
questionnaire. One participant says:
“No changing. No change.”
One suggestion given from a participant is to add a longer time period than the last two weeks, which the participant means is too short time for
evaluation.
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Another participant thinks that it might add value to the questionnaire if information concerning gender or regional language was added.
“[…] the ones additions ha? Or? I told of the gender. You one type of questioning? English. Maybe local like
Kannada.”
5.2 Rating
Concerning the rating scale of the questionnaire, most of the participants thinks that the introduction is good but the participants discussed that some alterations might be needed. They reasoned about that this is due to both language difficulties in understanding the term “to what extent” but also how to rate the steps of rating: “Not at all”, “To a small extent”, “To a moderate extent”, “To a large extent” ,“To the full extent” and “Not Applicable”. One participant says that the first part of item 1 is understandable but then wonders how to rate it:
“You understand this, which the sounds comes from, “to what extent do you have difficulties”. It´s very difficult to answer. (*laughs*)
Another participant asked about how the scale of the questionnaire works: “You ask what is extent, I mean how to answer when the question comes and what are the measurable?”
5.3 Time
On the theme of the time it took to fill in the questionnaire, the participants express that they have enough time and the amount of time was good. The time to fill in the questionnaire varied between 3 – 35 minutes for the
participants in this study. There was however one participant who did not finish the questionnaire at all and there was a discussion if said participant may be illiterate.
Here is what the participants answered when the moderator asked about the time it took to fill in the questionnaire:
“The time you´ve taken to fill up the questionnaire? Was it
too lengthy or…?”
“No it was ok.”
5.4 Adding information
The theme of adding information to the item is a concern for nine items. These are: 1 about perceiving soft sounds, 4 about tinnitus, 5 about eyesight, 11 about understanding when people talk fast, 12 about challenging listening situations, 13 about how noise effects the individual, 14 about how positive outlook on life the individual has, 21 about strategies to facilitate
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In the first item concerning how well soft sounds are perceived, there is a matter of adding information to the questionnaire. Here a participant argues that the examples given do not carry enough resemblance to each other and there needs to be information clarifying how the different sounds are
connected.
“Whispering and birds, two different. I have difficulties when somebody whispers but birds I can actually hear. Insects also I can hear. Their chirping and singing. I offer I should be to moderate extent. […] Grouping together I think is wrong.” On the fifth item on the questionnaire regrading eyesight, all focus groups had discussions on the relevance of a question on eyesight in the present
questionnaire. After information was given from the moderator the participants all agreed that adding more information would be of great use for the
relevance and understanding of the question. One participant says: “It (the fifth item) appears to be out of place!” And another participant argues:
“But eyesight, it’s not a direct related.”
Some of the items in the questionnaire participants meant needed further clarification in order for them to understand either due to language difficulties or other reasons. Two of the participants had comments on item number 13 concerning how hinder effects everyday life for the individual:
“Hinder means?”
“Hinder means problem?”
Item 30 is about hearing health services and one of the participants comment: “Sorry, means? What is the “hearing health services”? Are they as common, that they don´t know?”
Meaning that the participant is wondering whether or not this is the common words used for audiological care.
5.5 Good item
Out of the 30 items in the questionnaire, 20 of them are deemed “Good”, hence this is the most common theme. The items are reasoned to contain good content, good relevance and it is understandable. These are items 2 about difficulties locating sound, 3 about listening to everyday sounds, 6 about understanding speech in quiet situations, 7 about speech in noisy situations, 9 about conversing with one other person, 10 about conversing in group, 11 about understanding when people talk fast, 15 about achieving self-set goals, 17 about experiencing negative emotions in relation to hearing problems, 18 about dealing with stress in relation to hearing problems, 19
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about using telecommunication technology, 21 about strategies to facilitate communication, 22 about actively participating in education and training, 23 about participating in paid work, 24 about participating in community life, 25 about participating in recreation and leisure activities, 26 about family support in relation to hearing problems, 27 about interacting in relationships, 28 about experienced treatment from society and 29
“It is very important. You´re entering in different stages of life. So, we will be having our own goals. It is very important of this […]”
Meaning that people of all ages, no matter where they are in life, they can relate to this item, and therefore it is perceived as meaningful and good. Participants were often asked by the moderator how good the thought the item was. In one group the moderator asked this on item 11 concerning people who talk fast, after which the participants nodded in agreement. “Now, the content of this question, in the problems that you´re facing, you feel it’s understandable to express that there?”
On item 6 about understanding speech in quiet situations, the moderator asked about the content and the relevance. The participants agreed that the item was fine and clear in several interviews. These are quotes from
moderators speaking in two different interviews about item 6: “It is relevant? Content is fine?”
And:
“It´s clear, ha? It´s clear.”
“Ha” is an expression used by Indians meaning “yes” or “okay”.
5.6 Changing
There are two items, 8 about understanding unfamiliar voices and 16 about level of motivation to deal with hearing problems, which are considered in need of change for its content to be good. For item 8, a participant expressed the following:
“Unfamiliar I think is, the common people don´t understand this. Unfamiliar voices.”
Meaning that the content of the item could be misunderstood if not changed. For item 16 the discussion focused on how much people are able to affect their level of motivation and one participant said that the item needed to be changed in order to clarify this.
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“[…] If a person is very poor then he isn´t motivated to deal with his hearing problem. Because things will be very expensive. So, he might say “To the fullest extent I am motivated but I´m, I don’t have money to deal with it.” By changing item 8 and 16 participants feel that they would understand the content better.
5.7 Irrelevant
A few items are considered irrelevant for the questionnaire, this was item 14 about having a positive outlook on life and 18 about dealing with stressful situations as a person with hearing problems. A participant said the following on item 14:
“You have to know the context. With the other question, it looks like this one is a difficult question. […] this question, I find it not relevant.”
Item 18 deals with the subject of stressful situations in relation to hearing deficiency and this is a response from one participant:
“I think the reaction is same for everyone. It depends upon the reaction. How you will react to the stressful situation. So the reaction is no way connected to… Knowing how react is… stressful situation. It´s in no way connected to hearing and so… Feeling Not relevant.”
However, several participants also thought that item 18 was good and it is therefore included in several themes.
5.8 Not applicable
On the theme Not Applicable, there is item 20, which deals with the subject of loop systems and close captions. Here three participants from three different focus group interviews said:
“I didn´t understand, what is the loop system?”
“Loop and close caption? Is it like public resources or something? Loudspeakers?”
“Loop system is?”
6. Discussion
The following section discusses the results in relation to earlier research and theory which is included in the background. After that comes a section which discusses the methodology used.
6.1 Result discussion
All the results from the focus group interviews about HFEQ (Granberg et.al 2020) are sorted into different themes. These themes are in this section
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discussed and related to ICF Brief Core Set (Granberg et.al., 2014b) in order to investigate any possible connections between the ICF categories and the themes that have emerged from the interviews. The ICF Brief Core Set with its origin in ICF have five categories in total and three are relevant for HFEQ: Body functions, Activities & Participating and environmental factors
(Granberg, 2020., WHO, 2001).
Two goals from SDG’s (UN, n.d.) are relevant for several discussions within the different themes from the questionnaire: Goal three Good health and
well-being and goal ten Reduced inequality.
6.1.1 Introduction to the questionnaire
There are several positive thoughts on the introduction but also some
thoughts on editing it. Several participants are saying that there is no need for change and some participants are saying that the timeframe mentioned in the introduction (two weeks) needs to be extended. This, they say, is to ease the evaluation because “the last two weeks” is not enough time. Some of the participants do not experience that the past two weeks being enough time to evaluate all the areas covered by the questionnaire. There are several different physical places described in the questionnaire such as “places of worship”, “paid work” or “participating in recreation and leisure activities” (Granberg, 2020). Some of the participants argue that they rarely visit all the described places in the questionnaire which therefore makes it harder for them to evaluate. However, the introduction is clear for most of the
participants and the conclusion is that it has enough information to understand.
Participants mentioned the need for adding gender in the introduction. Granberg, et al (2014a) also discuss the lack of information about gender in other questionnaires, as there are some evidence suggesting that there are differences in daily usage of hearing aid. The piece of information on gender might provide a valuable insight in differences between the genders and it should be considered as a part of the introduction.
6.1.2 Rating
A few of the participants are having trouble understanding the rating scale. In order to answer the items, the participants have to rate to which extent they are experiencing the particular problem for every item. The steps of the scale are “0=Not at all”, “1= To a small extent”, “2= To a moderate extent”, “3 =To a
large extent”, “4=To the full extent” and “9= Not applicable” (Granberg, 2020).
Some of the items are described in a way that the participants do not understand if “to a small extent” was the “good” answer, meaning no
problems. Some participants also expressed that they found it difficult to rate the different options in relation to their experience. There is, for example, a discussion on item 4 concerning sounds of tinnitus, how to rate if the individual only perceives problems at night before going to sleep. The
participants then wondered how they should answer if they do not experience the problem at all times, but only sometimes. The rating might need alteration in order for it to be valid.
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6.1.3 Time
The time it took to fill in the questionnaire is good according to the
participants. There is a big difference in how quickly the participants filled in the questionnaire. From the first completion to the last, there was about 30 minutes difference. The differences may have been due to varying knowledge of English but also because of the fact that some people need more time than others. This problem is hard to resolve, as there often are differences
between how fast you can fill in a questionnaire, regardless of whether it is your first or second language (Indien, NE, n.d.; SDG India, 2019). However, this did not affect the participants, almost everyone felt that the time it took to fill in the questionnaire was good and those who were done more quickly with the questionnaire, patiently waited for those who took longer time to finish. 6.1.4 Adding information
One participant found item number 1, about difficulties noticing soft sounds, difficult to answer and thought that it contained two different items, that whispering is not the same as insects or birds. It is important to reflect over the misunderstandings that may arise as a result of the difference in how to pronounce the words in English. In this case, the patient may have meant “to different things” instead of “two different things” which result in a different interpretation.
The participant expressed that they could answer “yes” to half of the item but “no” to the remaining half and therefore thought it should be divided into two different items. This item, concerning soft sounds in general, had examples like whispering or bird sounds, just to make it clearer for the participant to understand what soft sounds mean. Another participant expressed that the item was hard to answer, explaining that some sounds might be in the background but inaudible because they are assimilated and ignored. This item induced a few reflections and might need adding some information to make it clearer such as explaining the soft sound with the word “example” instead of “such as”. Then the participants maybe understand better that it is just a suggestion of things that have a soft sound and not the things they need to use in their own judgment.
Item number 4, about if tinnitus effects the everyday life, the participants thought that if you are not experiencing tinnitus you might not understand what it is. By adding more information to the item, more people might
understand its content. The item is however, asked in a way that does not use the word tinnitus but instead describes the sound that may arise, making the content easier to understand.
Item 5 concerns eyesight and might be hard to understand without
background information according to the participants. The item is one of the items most discussed throughout the interviews. They think that the item needs more information about why there is a need for an item about eyesight in a hearing questionnaire. When the participants got an explanation about the connection between eyes and ears, they thought the item was more relevant. It might need information like “because eyes and ears are connected to each other” to make the question more clear.
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In item number 11, focusing on keeping up when people talk fast, the participants think that there is information missing about a situation where someone is talking fast. The participants says it is more than just the speed of a dialog that determines whether one perceives the information or not. The participants believe that dialect may also be an important factor. So according to the participants the item needs more information about the situation to fill in the answer.
The participants think that item number 12, about maintaining concentration in challenging listening situations is good, but they also think it might need some more information about what a “challenging situation” is. Different situation can be challenging for different people, so in order to make it clearer, the questionnaire need add more information about if they should think about a situation who is challenging for them or write a special situation.
For item number 13, which concerns how noise hinders a person in everyday life, several participants have troubles with understanding what “hinder” means. This might be due to a language barrier or that it is a less common word. There are many languages spoken in India and even though many people may have some knowledge of the English language, it might not be their mother tongue (Indien, NE, n.d.; SDG India, 2019). Once the word was explained, the participants agreed that the item was good and then they thought that with some additions, it would be a good item.
Item 13 and 30 are in the ICF Brief Core Set category of environmental factors (Granberg, 2020., Granberg, 2014b) and concerns how the
surroundings affect the individual. Item 30 concerns the important subject of how the hearing health services has helped the individual. This relates to UN (n.d.) goal of good health and well-being. Together with the participants opinions on the items being good with some additional information, this makes the items highly relevant and valid for the questionnaire. This is
however an item that the participants might have issues relating to due to the societal differences. The item speaks of hearing health services, something which is a part of a Swedish society and fairly accessible to the inhabitants of Sweden. In India, several hundred million people live in poverty and the social and societal structures might have a focus on trying to provide clean water or food to its inhabitants, rather than hearing health services (Indien, NE, n.d.; SDG India, 2019).
The items 1, 4, 5, 11, 12 and 14 are in this theme of adding information and the also belong in the category of body functions in the structure of ICF Brief Core set (Granberg, 2015). There might be an issue for participants to relate to some of the words used in the questionnaire due to language barriers or the fact that some of the terms are not used in everyday life. For example, the word “hinder” might be uncommon or it might be uncommon for people to reflect over the relationship between eyes and ears. It is unclear exactly why the items are in need of additional information but another explanation to the misunderstanding of the items, might be due to level of education (Indien, NE, n.d.; SDG India, 2019). There´s also a possibility that the bodily structures and relations to hearing is unknown for many people and therefore this ICF
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theme was especially difficult for the participants to understand (Granberg, 2014, Indien, NE, n.d., SDG India, 2019).
Overall however, the items in this theme are in need of small changes and the main structure of the items are deemed by the participants to be of good content, understandability and are experienced as relevant to them. 6.1.5 Good item
Most of the items in HFEQ we considered as good by the participants. On the items 6, 9 and 11, which is about difficulties understanding speech,
conversing with people, keeping up if they talk fast, nothing was explicitly stated from the participants, they only agreed with the moderators when asked if the item was good or not. They agreed by nodding their heads and humming. This made it a little unclear about what the participants really thought about the questionnaire. To the items 2, 3, 7, 10, 15, 17, 18, 19, 21, 22, 23, 24 and 25 there are short but clear answers. In the analysis it is interpreted as good when the participants did not need to ask anything, and they understood what the item was about.
6.1.6 Changing
The matter of changing an item was discussed for the items number 8, about understanding unfamiliar voices and number 16, about motivation to deal with problems in life. The change concerns both clarification of the items and how the statements in the items are put. Item 8 has similar problems as for
example question 13 but here the participants discussed that an alteration of the words “unfamiliar voices” like “voices from strangers” would be more efficient than adding to it.
Item number 16 regarding motivation levels for dealing with hearing problems received comments from one participant concerning that the level of
motivation might not be something you can affect. The participants went on to explaining how such things as motivation may be out of control for an
individual. In the theme of changing items, the items are included in different categories of ICF, so the ICF-categories does not appear to be the issue with the items. The problem seems instead to deal with the content of specific items. There are no suggestions given from the participants on how an alteration could be expressed, how it should be changed. However, most participants thought that with the alterations, the question of understandability and content would be good and since relevance was not questioned by the participants and therefore, the items should stay in the questionnaire. Another participant raised the question that everybody might not afford hearing aids and that it is difficult to answer the question. It is important that the participants are informed and learn that hearing rehabilitation includes more than just hearing aids. After Engel (1978) created the biopsychosocial health model of health, the view on healthcare and the individual’s role in receiving healthcare changed. Changing the view of looking at a problem simply from the perspective of the problem to looking at the individual in whole, yields better results (Tye-Murray, 2015). Hearing rehabilitation from an ICF perspective and if in the need of it, hearing aids, will help the patient and
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to do so, information concerning motivation level to deal with hearing problems, is relevant.
6.1.7 Irrelevant
There are two items the participants deem irrelevant. Participants claims that item 14, about a positive outlook on life, does not add value to the
questionnaire. However, the item deals with the matter of positive outlook on life, which is an important part of hearing rehabilitation according to Tye-Murray (2015) and to the category of body functions in the structure of ICF Brief Core Set.
Item 18 considers stressful situations in relation to HL and here some of the participants says that stress is not exclusively for people with HL so therefore the item will not add value to the questionnaire.
6.1.8 Not applicable
One difference between India and Sweden is the use of technology and support from governments and society for people with HL and how the accessibility looks for different individuals in the society (Indien, NE, n.d., SDG India, 2019., UN, .n.d.). In India some of the bigger cities may have loop system but in Manipal, where this study took place, the participants did not know about such systems. Because of this, item 20 became “Not applicable” for the participants. In comparison, the item on loop system is not widely known amongst all people with HL loss in Sweden either but when explained and perhaps after showing the symbol for loop systems, most people
understood. In India on the other hand, the participants had never heard of the system and there is no widely known recognition on the matter.
The other part of item 20, dealing with the subject of close caption have similar discussions in Sweden as in India. Most people, after a brief
introduction, understands that close captions are like subtitles but includes all auditive information such as phones ringing or someone coughing. In the end, participants came to the conclusion that a item on loop systems and close caption was “Not applicable” for an Indian context.
By studying the results, it becomes clear that certain issues with a similar theme are more difficult for the participants to understand. One example from the questionnaire is item 8, it concerns difficulties in understanding unfamiliar voices. Another item that the participants had difficulties to understand was item number 29 which concerns accessibility in the individual’s community as a person with hearing problems. Both of these items evaluate an environment relevant to the individuals. By comparing themes in the items to what the participants had difficulties with, the authors overlooked whether, perhaps, there were special themes that the participants experienced as particularly difficult.
When analyzing the content validity of a questionnaire that is meant to be applicable internationally it is important to keep in mind structural and cultural differences that might occur. India is the
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The result from the interviews shows that the questionnaire has a good content validity as the majority of the items in the questionnaire received positive feedback from the participants and there was only a small need for change (Granheim & Lundman, 2004). It appears in the result, that there might be a need for a simplified language without technical terms like “to what extent”, due to the fact that participants did not understand the context of some items in the questionnaire and needed an explanation. One of the criteria for being part of the study was that the participant needed to be able to read English. That criteria was not met as many of the participants could not speak English or had a poor knowledge of English. For many of them the English were their second language which leads to deficiencies in
communication but also deficiencies in information. There were also
indications that at least one participant was illiterate in the mother tongue and had even less knowledge of English. This participant remained silent
throughout the interview and even though listed as a participant, did not contribute to the discussion nor answering the forms.
6.2 Method discussion
The method which is used to collect the qualitative data is through focus groups. All the interviews took place at Manipal University and the interviews went well. There are a good number of participants who were able to attend the interviews. There were two experienced moderators who were familiar with the subject of hearing rehabilitation and there were some interesting discussions on the matter with the participants. By using the method of content validation and the background information the research questions could be answered from the focus groups and the interview guide.
6.2.1 Participants
The age range may influence the results if one wishes to compare the results of this study to the other countries working with content validation of HFEQ as India did not follow the same range. In the other studies, within this project such as in South Africa, Canada and US, the age groups were 18-30
(younger), 31-65 (middle-aged), 66+ (elderly). Overlooking the mean ages of the groups provides a good idea of how different the ages are compared to the other studies. The group interview for the younger has a mean age of 30,4 years, the middle-aged had 55,6 years and the elderly had 75,6 years. The participants are part of the hearing rehabilitation at the Manipal University Hospital and have all had their hearing checked, but there were no inclusion or exclusion criteria for the type of HL for this study nor a group division according to hearing level of HL. This should not have much significance when this questionnaire is to work for everyone who has some form of HL. But there is a possibility that the group lacked a good homogeneity due to possible hearing differences that is of importance in focus group studies (Wong, 2008) On the matter of hearing ability, there is a question on the form with demographic information (Attachment 1) that concerns whether or not the participant wears a hearing aid. It is of importance that the participant chooses “Yes” or “No” and then fill in the questionnaire accurately. There
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were some discussions in the interviews that indicates this continuity was not maintained. One participant said:
“Though, I also have a hearing aid since almost 10 years, I rarely use it, very, very rarely...”
The discussion that followed led to the assumption that participants may have altered their point of view from being with or without hearing aid in different situations depending on which item in the questionnaire they were on. 6.2.2 Data collection
6.2.2.1 Initial literature search
This study started with an extensive research on the proceedings of content analysis and how to execute an analysis scheme. It was difficult to design an analysis scheme and to know how to choose correct themes and how to interpret the material. These mentioned factors could be discussed as
sources of error if the proceedings were not thoroughly reviewed. In order to reduce risk for error, help was given by mentors and in-depth studies were done prior to this study.
The literature used in this study has been found through several different way such as through authorities, literature search and the University library at Manipal University. The literature found at the library held lower quality than its equal at Örebro University in the way that the books were not of the latest issue and copies of acknowledged literature concerning hearing rehabilitation were not to be found. However, the library at Manipal had other books and resources which compensated for said difficulties in quality and therefore the end result was likely unaffected.
6.2.2.2 Focus group interviews
According to Malterud (2014) the composition of each group should strive towards being homogeneously arranged in order to gain as much common experience as possible and to lessen any tensions that may arise. There is a possibility that the groups used in this study did not have a homogeneous composition. There were indications of people with either higher or lower statues who participated in the study and this might have affected the discussions. It might have led to people of higher status being allowed to speak more often than others in the group do, due to norms from the cast system (Indien, NE, n.d.; SDG India, 2019). It is important to have a
moderator that notices patterns of uneven speaking time spent during a focus group discussion. However, the moderator did, from situation to situation, facilitate and spread the word between participants, but despite this, it was often the same participants speaking during each interview (Wong, 2008). In the interview guide, there was instructions on how to proceed during the interviews. All the participants were supposed to receive the same opportunity
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to express their feelings and tell their own stories about what they are thinking and feel about the hearing aid situation. Despite this, all interviews were conducted differently, and all groups received slightly or moderately different information. This raises the question of how reliable the results of this study are (Fayers, & Machin, 2007). Some of the participants in the groups asked questions concerning the study and therefore received more information about the study than the other groups. Some interview groups received more information on subjects such as why they are participating in the interview and why it was of importance to reflect and express whatever opinion they had. The opinions expressed by the more informed groups were more diverse and had more value in the process of analysis than the opinions expressed from the less informed groups.
According to the interview guide, and in order to receive answer to the three questions for this study, the moderator was supposed to ask three questions of content, relevance and understandability to evaluate the content validity on each in the questionnaire. As all the interviews were different for each group, the three questions: 1) The content of the questions in HFEQ?, 2) The
relevance of the questions in HFEQ?, 3) How understandable the questions of HFEQ are?, for content validity was not answered for each item on the questionnaire. Information needed to properly evaluate the questionnaire from an Indian context and different age groups, has not been found in all items. This sheds light on the importance that all who are involved in the study needs to operate towards the same goal and from the same information for results to be valid and fruitful (Wong, 2008). If the guidelines for this project had been followed throughout all the interviews, there might have been more material to analyze and use for the study and the reliability had been higher. According to Bryman (2018) another way of increasing the reliability of a study is if the participant gets an opportunity to read this study and the
results, prior to publication. This is something the authors opted out of due to time constraints.
6.2.3 Material and equipment
During the transcription process, many adversities emerged. The recorded material, in parts, had bad quality, and it was hard to hear and understand what the participant said. There was also a lot of background noise such as mobile phones buzzing on the table where the microphone was lying and the sound of a fan. All this sounds and buzzing is a source of error that call for misinterpretations of the material. In an effort to remove as much risk of error as possible, there were two audio recorders which were placed at a distance from each other in order to receive as many participants as possible.
6.2.4 Methodological considerations
A source of error that emerged was that the interviews at times was in
another language. The transcribed material was interpreted and translated by one of the moderators which was then interpreted by the authors. At first, the translated material was done by hand after which one of the authors referred the material into the document with transcribed material. That meant that the
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material went through two components which increased risk for
misinterpretations. In order to reduce the risk for error, further translation was then made directly into the document of transcribed material.
Besides the problems with recording and translation, there were some issues understanding what the participants said even though they were speaking English. This might be because of the accent the participants had but also that their hearing loss effects the way they speak (Tye-Murray, 2015; WHO, 2018.; Yoshinaga-Itano, Sedey, Coulter & Mehl, 1998).
6.2.5 Ethical considerations
There were differences in educational level amongst the participants in which may have impact on the results of the study. This is partially in the matter of a participant who might have been illiterate, but also, in one of the focus
groups, there were several highly educated participants. Due to their
background, they could argue for their cause and at times lead the discussion within the group in a way that influenced other participants. Those of lower levels of education seems to have troubles getting their opinions expressed during the interviews and the influence of cast and the unspoken norms in the room might have been a contributing factor to the outcome of the interviews. Therefore, there is a risk that the outcome of this study is other than
desirable, and it might have been a source of error. 6.2.6 Further research
To customize a questionnaire that is internationally valid would be of benefit for patients with HL. If the questionnaire could be available in patients first language this might reduce the risk of misunderstandings and increase patient participation.
7. Conclusion
The summary of this study shows that the result of the HFEQ indicate that overall, the participants experience that the questionnaire was
understandable and the content is good.
Through the interviews in India it became clear that the questionnaire needs a more general language in order to be understood. It would also be preferable if the questionnaire is translated into as many languages as possible, to decrease misunderstandings. HFEQ can help increase patient participation in the rehabilitation process.
Overall the participants in this study thought it needs to add more information, just to make some items clearer to understand and to increase content
validity.
The research questions, “The content of the questions in HFEQ”, “The
relevance of the questions in HFEQ” and “How understandable the questions of HFEQ are”, were answered to some extent. Under the interviews the question about content answered good. That question was answered to a great extent but the question about understandability was answered to lesser
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extent, since the moderators did not ask that question on each item in the questionnaire. The last question about relevance were not answered satisfactory.
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Attachment 1: Demographic information
Demographic information
Date (YYMMDD): _______________________________________
Name: __________________________________________________
Self-reported first language: _________________________________
Date of birth (YYMMDD):___________________________________
Sex:
Female Male Other Do you use hearing aid/s? Yes No
Do you work? Yes No
If yes, what do you work with?:_________________________________
Highest, finished, educational level: No school
Primary school Secondary school High school University
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Attachment 2: Interview guide Interview guide
The focus groups should begin with the participants fill in the HFEQ to check how long time it takes. They will also have a chance to read it through before the discussions. The focus group interviews should take about two hours each and be audio recorded.
The topics for the discussions will be the questions in the HFEQ (1-31). For each questions they will discuss three topics/questions (1-3):
1) What do you think about the content of the question? 2) How relevant is the question for you?
3) How understandable is the question?
To sum up there will be two general questions (4-5):
4) How do you experience the time it took to fill in the questionnaire? 5) Is there anything you would like to add?
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Attachment 3: Analysis scheme
Speaker (group #: individual #) and meaning unit
Condensed meaning unit Condensed meaning unit -Interpretation of the underlying meaning Sub-theme Theme Concer ning questi on # 1:3 Moderately I understand. The question might need some clarification. The question is clear with some further instructions. Language barrier. Further informatio n needed. Adding more information. 1 2:7 Whispering and birds, two different. I have difficulties when somebody whispers but birds I can actually hear. Insects also I can hear. Their chirping and singing. I offer I should be to moderate extent. […] Grouping together I think is wrong. There are several examples in the question, and it might be seen as difficult to answer when the patient can hear some of the things but not all. The question needs to be clarified with some further instructions. Further informatio n needed to clarify what the alternative s means or further instruction s 1 4:3 That may be difficult. But what happens is, only through reading this really interesting. Thing is, we noted. See, when there are, probably children might be able to hear it more because it´s new for them. For it to be of use, you can´t ignore it (meaning: for adults to hear, they can´t be used to the sounds, used to ignoring sounds of birds etc.). Right? So, probably, even the insects or the birds, we don´t hear it because we are ignoring it. We look out for something else at that time. Probably it is late at night and they are
The situation may be very different for younger or elderly people. Somethings you may not hear because you are ignoring them. The question may be perceived differently for different people. 1
