Caregiver-Reported Indicators of Communication and Social Functioning for Young Children Who Are Deaf or Hard of Hearing

Caregiver-Reported Indicators of Communication and Social Functioning for Young Children Who Are... Abstract We elicited caregiver-reported observations of children aged 5–10 who were deaf or hard of hearing (DHH) that resulted in two age-specific instruments: Caregiver Report of Behaviors and Events (CROBE-DHH 5–7 and 8–10). These new instruments record observations on communication and social behaviors/events. In Study 1, 36 caregivers provided qualitative data on important content on what they were able to observe for instrument development and in Study 2, 271 provided data for studying cross-sectional measurement properties. Two modules resulted in 11 items for children age 5–7 and 15 items for children 8–10 years. Items showing good 7-day reproducibility (ICC over .70) and fair 4-week reproducibility (ICC over .50) were retained. Children with milder hearing loss received higher (better) scores. Items did not distinguish between those with or without cochlear implants. Analyses suggest that the instruments are best used as individual indicator items. In both age groups, caregivers reported youths missed out on family conversations and spent little time on their own. These content-validated indicators apply to all children with DHH. Further work will evaluate the usefulness of these indicators in evaluating change in communication and social behaviors, and the implications of results for intervention. About 2–3 of every 1,000 children in the United States are born with decreased hearing level in the moderate to profound range in one or both ears and are considered deaf or hard of hearing (DHH) (Centers for Disease Control and Prevention, 2010). By school age, the prevalence increases to 6 of every 1,000 children due to late identification, late onset, and progressive hearing losses (Mehra, Eavey, & Keamy, 2009). Over 90% of children who are deaf are born to parents with hearing in the normal range (Mitchell, & Karchmer, 2004). The presence of hearing loss during infancy and early childhood may have substantial impact on a child’s social, emotional and language development. Information on how young children who are deaf and hard of hearing are functioning from the perspective of parents or caregivers is important for designing interventions to improve child and youth functioning at both the group and individual level. Caregivers, primarily parents, play a pivotal role in how children who are DHH function within their families, school, and environment. While outcomes for children who are DHH are often measured with audiological, speech or language measures, it is important to understand how the children are able to function in their natural environments. Caregivers, customarily parents, are central to the development of communication and other social skills among children who are DHH. Caregivers typically make decisions, often with guidance and input from professionals with typical hearing ability who specialize in working with DHH children (e.g., surgeons, teachers, audiologists, counselors). Information on how young children who are deaf and hard of hearing are functioning from the perspective of parents or caregivers is important for designing interventions to improve child and youth functioning at both the group and individual levels. Outcomes Assessment in Children Who are DHH Clinical outcome assessments (COAs) are outcomes resulting from performance tests (Performance-Task Outcomes or PerFOs), patient-reported outcomes (PROs), clinician-reported outcomes (ClinROs), or observer-reported outcomes (ObsROs) (Walton et al., 2015). PROs are reports coming directly from the patient (i.e., study participant) about a health or medical condition or its treatment without interpretation of the patient’s response by anyone else (United States Food and Drug Administration, 2009). Self-report of symptoms and feelings for youth under age 11 has had variable success in demonstrating acceptable properties of reliability and validity. A review of 53 health-related self-report measures for children lower than age 8 found that only 51% met minimal psychometric criteria (Cremeens, Eiser, & Blades, 2006). A recent task force report on self-report by young children recommended that observer-reported measures (ObsROs) from (parents or caregivers) be used with content assessing observable behaviors as much as possible rather than subjective aspects of the child’s experience (Matza, Swensen, Flood, Secnik, & Leidy, 2004). ObsROs are needed for young persons with DHH because often they are unable to broadly report direct effects or impacts of their medical condition or disability (Matza et al., 2013). Thus, caregivers are important informants for developing reliable and valid outcomes measures when self- report instruments do not meet the measurement standards for instruments in clinical trials or clinical practice. In particular caregivers can be important informants on communication and social functioning of their children. These reports may add to other observations from teachers, day care providers, or health providers. Existing questionnaires for assessing some aspects of hearing status among young persons completed by caregivers are available. Some of these instruments inquire about caregiver issues with their children rather than observations of their child and hearing-related behaviors or events. For example, the Paediatric Audiology Quality of Life parent-report questionnaire (Edwards, Hill, & Mahon, 2012), developed with caregivers of deaf children age 3–18 years old asks the parent to rate the degree of concern pertinent to communication and independence, emotional well-being, peer comparisons, and acceptance by peers. To develop this instrument, caregivers of 57 bilaterally implanted children to young adults aged 4–24 year documented their children’s implant usage at different time intervals. This ObsRO showed general improvement in the usage of cochlear implants over time. In another study, caregivers and teachers reported on the mental health of children age 6–16 years of age (Fellinger, Holzinger, & Pollard, 2012). Caregivers have also reported that the range of information available for use in making choices about treatment is limited (Ahlert & Greeff, 2012). Other measures are specific to early sign production observed by parents who are DHH (Anderson & Reilly, 2002) or teacher evaluations of student social communication skills (Antia, Jones, Luckner, Kreimeyer, & Reed, 2011). The instruments are valuable in specific populations and contexts for example young persons with cochlear implants (O’Neill, Lutman, Archbold, Gregory, & Nikolopoulos, 2004). Furthermore, most of these instruments were developed by experts, without significant parental/caregiver input or have been developed in other populations and tested in the DHH population. The paucity of caregiver-centered observation-based instruments developed specifically for documenting the social functioning and communication of children who are deaf or hard of hearing prompted exploration and development of the instruments reported here. For the remainder of this article, we shall use the term caregiver to include all primary caregivers of young children who are DHH. The qualitative study aims were (a) to elicit observable behaviors and events that caregivers of young children who are DHH considered to be associated with their children’s communication and social functioning, and (b) to develop instrument content and design of two observer-reported outcome instruments for use in children ages 5–7 and 8–10 years. Quantitative study aims were to assess the cross-sectional measurement properties of the CROBE-DHH for further exploration in group-level research and program evaluation. This paper reports the results of these studies and their implications for testing these measures in research and practice aimed at improving communication and social functioning in young children who cannot report for themselves or to augment self-reported measures. Study 1: Item Development We conducted a qualitative study for concept elicitation with caregivers of children ages 5–10 years who were identified as being deaf or hard of hearing with bilateral hearing loss with 3-tone frequency pure tone averages above 25 dB. The data collected through interviews were analyzed to create two observer-reported outcome measures (ObsROs), one for children with DHH ages 5–7 years and one for those 8–10 years. We chose these age groups based on prior work with child outcome measures by the authors (SeaQol group, University of Washington, 2017). In addition to concept elicitation interviews, cognitive interviews and review of item content by caregivers and experts were also conducted. We also conducted a quantitative study to assess the item characteristics and measurement properties of the new DHH ObsROs. Qualitative Sample We conducted 36 concept elicitation interviews and 12 individual cognitive interviews with caregivers who were hard of hearing or hearing. All participants in the qualitative study were recruited from the University of Washington. By design, the participants were divided into categories balanced with regard to child sex and age band (5–7 and 8–10 years). The draft instruments were then reviewed and critiqued by DHH specialists (n = 7) enlisted locally and nationally. The specialists included an otolaryngologist, audiologist, social worker, executives of a parent-based organization, and superintendents of schools for DHH youth. Three rounds of cognitive interviews were completed with parents of youth, including some parents who participated in item elicitation. After each round, the items were revised before the quantitative testing. Approval for this research was received from the Institutional Review Board of Seattle Children’s Hospital. Qualitative Sample Described Semi-structured individual qualitative interviews were conducted with n = 36 caregivers of DHH youth ages 5–10 years. Majority of caregivers were female (81%), white (61%), and caregivers of 5–7 years old DHH children (61%), with profound (50%) or moderate (33%) hearing loss. In half of the households caregivers were both hearing (50%) and primary language used at home was English (61%) (Table 1). Table 1. Sample characteristics—caregiver concept elicitation interviews (n = 36) DHH child age (years) n (%) 5–7 22 (61) 8–10 14 (39) Caregiver interviewee female, n (%) 32 (89) DHH child female, n (%) 22 (61) Child hearing level  Mild 2 (6)  Mod 12 (33)  Mod-severe/severe 3 (8)  Profound 19 (50) Child ethnicity (%)  White 22 (61)  Hispanic/Latino 6 (17)  African American/Black 1 (3)  Asian/Pacific Islander 1 (3)  Other 6 (17) Caregiver hearing status  Female deaf 8 (22)  Male deaf 10 (28)  Both hearing 18 (50) Primary language used at home  English 22 (61)  ASL 7 (19)  English-Like Sign 3 (8)  Spanish 3 (8)  Speech and gestures 1 (3) DHH child age (years) n (%) 5–7 22 (61) 8–10 14 (39) Caregiver interviewee female, n (%) 32 (89) DHH child female, n (%) 22 (61) Child hearing level  Mild 2 (6)  Mod 12 (33)  Mod-severe/severe 3 (8)  Profound 19 (50) Child ethnicity (%)  White 22 (61)  Hispanic/Latino 6 (17)  African American/Black 1 (3)  Asian/Pacific Islander 1 (3)  Other 6 (17) Caregiver hearing status  Female deaf 8 (22)  Male deaf 10 (28)  Both hearing 18 (50) Primary language used at home  English 22 (61)  ASL 7 (19)  English-Like Sign 3 (8)  Spanish 3 (8)  Speech and gestures 1 (3) Table 1. Sample characteristics—caregiver concept elicitation interviews (n = 36) DHH child age (years) n (%) 5–7 22 (61) 8–10 14 (39) Caregiver interviewee female, n (%) 32 (89) DHH child female, n (%) 22 (61) Child hearing level  Mild 2 (6)  Mod 12 (33)  Mod-severe/severe 3 (8)  Profound 19 (50) Child ethnicity (%)  White 22 (61)  Hispanic/Latino 6 (17)  African American/Black 1 (3)  Asian/Pacific Islander 1 (3)  Other 6 (17) Caregiver hearing status  Female deaf 8 (22)  Male deaf 10 (28)  Both hearing 18 (50) Primary language used at home  English 22 (61)  ASL 7 (19)  English-Like Sign 3 (8)  Spanish 3 (8)  Speech and gestures 1 (3) DHH child age (years) n (%) 5–7 22 (61) 8–10 14 (39) Caregiver interviewee female, n (%) 32 (89) DHH child female, n (%) 22 (61) Child hearing level  Mild 2 (6)  Mod 12 (33)  Mod-severe/severe 3 (8)  Profound 19 (50) Child ethnicity (%)  White 22 (61)  Hispanic/Latino 6 (17)  African American/Black 1 (3)  Asian/Pacific Islander 1 (3)  Other 6 (17) Caregiver hearing status  Female deaf 8 (22)  Male deaf 10 (28)  Both hearing 18 (50) Primary language used at home  English 22 (61)  ASL 7 (19)  English-Like Sign 3 (8)  Spanish 3 (8)  Speech and gestures 1 (3) Procedures The goal of the concept elicitation interviews with 36 caregivers was to elicit diverse views regarding child functioning and well-being issues rather than obtain a representative community sample. Caregivers were asked about areas of life and issues they thought were important for the well-being and optimal development of their child with DHH. The interviews were semi-structured to allow for the exploration of as many additional issues that arose during the interview as possible without constraining the interviewees to pre-conceived concepts. The interview guide was arranged to flow from the general to the specific. New themes were explored and added to the interview guide as needed (i.e., theoretical sampling) (Corbin, Strauss, & Strauss, 2008). Data saturation was considered achieved when interviewees no longer brought up new concepts, defined by three successive interviews with no new content or themes (Richards, Richards, & Morse, 2012). Interviews were conducted in English, Spanish, and American Sign Language with all questions harmonized for similar meaning in the three languages by culturally adapting the American English version. The research team, led by the senior author trained in translation and cultural adaptation, looked at all questions, the forward translations into Spanish and ASL, and the back translations of the questions, using principles of language translation and cultural adaptation developed and applied widely in health outcome assessment (International Society for Quality of Life Research, 2018). Qualitative Analysis and Development of Item Content We conducted a thematic analysis in which we looked for patterns in the caregiver interview data related to observations of DHH-related child functioning and well-being. Thematic analysis focused on documenting and examining patterns in the qualitative data (Balakrishnan, Edwards, & Perkins, 2012; Edwards et al., 2005; Edwards, Huebner, Connell, & Patrick, 2002; Guest, MacQueen, & Namey, 2012). We performed this analysis by coding in phases: (1) familiarization through reading the data, (2) generating and applying codes, (3) searching for themes among codes, (4) reviewing themes, and (5) defining and naming themes. The interview transcripts were checked for accuracy before being uploaded into the Atlas.ti qualitative analysis program. All identifiers were removed from transcripts before they were uploaded to Atlas.ti. Two members of the research team began by reading through the first transcripts as they were uploaded to Atlas.ti, and independently generated initial code lists. The codes that were generated related to interview text indicating caregivers’ observations of their children’s functioning related to DHH. Relevant interview text was that which was specific to DHH and was an observation (seen or heard) of a behavior or event related to child functioning. The investigators compared their code lists and reconciled their codes into one list. Codes that were similar in meaning were combined and a code list was created which was manageable in number (less than 15), with codes that had clear, operational definitions attached to them. Once the code list was developed, it was presented to the rest of the research team, and pairs of investigators continued to code the interview transcripts for DHH-related content. Pairs of coders compared their results periodically, and reconciled their independent applications of codes until there was 100% agreement. A commonly agreed upon set of crafted items was finalized for future testing of cross-sectional and longitudinal measurement properties. Draft items were judged by the research team and authors against the following criteria of item quality: the item (1) represents an area of importance to caregivers of children with DHH, (2) is in the spoken language of caregivers and able to be translated into other languages conceptually, (3) is potentially responsive to changes associated with treatment, (4) is likely to discriminate by hearing status, and (5) has a definite valence (i.e., either a clear positive or negative interpretation that is understood by all caregivers in a similar manner). The matrix of criteria were applied to each item and items chosen by investigator judgment to balance the goal of having caregiver-driven content across all treatment modalities, items that could detect change over time, and were clearly translatable according to principles of translation and cultural adaptation outlined earlier. Cognitive interviewing assessed the relevance, importance and comprehension of the content of measures (Fowler, 1993). Interviewees engaged in “think aloud” to describe how they interpreted an item and how they chose a response. This method identified any problematic language, format, or confusion in the respondent. We elicited options from caregivers in order to revise areas of comprehension difficulty and then tested these changes. Upon completing the instrument, each participant was given a short debriefing interview aimed at assessing how well they understood the questions and instructions in the instrument. Standard procedures developed at the U.S. National Center for Health Statistics Cognitive Survey Laboratory were used in the debriefing process (Willis, 1999). Results We generated a total of 772 items as a result of the thematic qualitative analysis of the caregiver interview transcripts. We reduced this to 88 items through elimination of redundancies and application of the item selection criteria described in Methods. The list of 88 items was further reduced to 35 by the study team in consultation with the specialists on the advisory board, and the final list arrived at through cognitive interviews with the parents in which confusing items were revised or eliminated. Thus both experts and parents were involved in final item selection. Draft items that were tested are contained in Table 2. The draft DHH ObsRO for children ages 5–7 years consisted of 20 total items: 6 items with a 7-day recall and 14 items with a 4-week recall. Recall period was chosen on how frequently caregivers might observe the particular behavior or event. The 7-day recall was used for items that were thought by parents to be observable in 1 week, and the others were thought to occur less frequently and thus were asked with a 4-week recall. For children ages 8–10 years, the draft instrument consisted of 24 total items: 7 items with a 7-day recall and 17 items with a 4-week recall. In sum, the recall periods were designed to be as short as possible while long enough to capture the behaviors and events of interest. We retained items for testing in which the children reported the event or behavior to caregivers, even when the caregiver was not present. Parents thought that reporting what children told them was important information that might be helpful in assessment. Table 2. Sample characteristics—measurement properties (n = 271) DHH child age (years) n (%) 5–7 126 (46) 8–10 145 (54) Caregiver respondent female, n (%) 250 (92) DHH child female 129 (48) Child ethnicity  White 192 (71)  Hispanic/Latino 44 (16)  African American/Black 5 (2)  Asian/Pacific Islander 12 (4)  Other 17 (6) Female caregiver’s highest education  Less than HS 12 (6)  HS/GED 19 (9)  Some College 63 (31)  College 111 (54) Child hearing level  Mild/unilateral 26 (10)  Moderate/Moderate 80 (30)  Severe/profound 56 (21)  CI 104 (39) Caregiver hearing status  Hearing 218 (95)  Deaf or HH 49 (05) Child school type  Mainstream without DHH program 122 (45)  Mainstream with DHH program 78 (29)  School for the deaf (day and residential) 65 (24)  Home school 6 (2) Caregiver-reported primary communication method by DHH child at home  Speech 177 (66)  Sign 54 (20)  Equal usage 38 (14) DHH child age (years) n (%) 5–7 126 (46) 8–10 145 (54) Caregiver respondent female, n (%) 250 (92) DHH child female 129 (48) Child ethnicity  White 192 (71)  Hispanic/Latino 44 (16)  African American/Black 5 (2)  Asian/Pacific Islander 12 (4)  Other 17 (6) Female caregiver’s highest education  Less than HS 12 (6)  HS/GED 19 (9)  Some College 63 (31)  College 111 (54) Child hearing level  Mild/unilateral 26 (10)  Moderate/Moderate 80 (30)  Severe/profound 56 (21)  CI 104 (39) Caregiver hearing status  Hearing 218 (95)  Deaf or HH 49 (05) Child school type  Mainstream without DHH program 122 (45)  Mainstream with DHH program 78 (29)  School for the deaf (day and residential) 65 (24)  Home school 6 (2) Caregiver-reported primary communication method by DHH child at home  Speech 177 (66)  Sign 54 (20)  Equal usage 38 (14) Note. Sample sizes may not sum to 271 due to missing values. Table 2. Sample characteristics—measurement properties (n = 271) DHH child age (years) n (%) 5–7 126 (46) 8–10 145 (54) Caregiver respondent female, n (%) 250 (92) DHH child female 129 (48) Child ethnicity  White 192 (71)  Hispanic/Latino 44 (16)  African American/Black 5 (2)  Asian/Pacific Islander 12 (4)  Other 17 (6) Female caregiver’s highest education  Less than HS 12 (6)  HS/GED 19 (9)  Some College 63 (31)  College 111 (54) Child hearing level  Mild/unilateral 26 (10)  Moderate/Moderate 80 (30)  Severe/profound 56 (21)  CI 104 (39) Caregiver hearing status  Hearing 218 (95)  Deaf or HH 49 (05) Child school type  Mainstream without DHH program 122 (45)  Mainstream with DHH program 78 (29)  School for the deaf (day and residential) 65 (24)  Home school 6 (2) Caregiver-reported primary communication method by DHH child at home  Speech 177 (66)  Sign 54 (20)  Equal usage 38 (14) DHH child age (years) n (%) 5–7 126 (46) 8–10 145 (54) Caregiver respondent female, n (%) 250 (92) DHH child female 129 (48) Child ethnicity  White 192 (71)  Hispanic/Latino 44 (16)  African American/Black 5 (2)  Asian/Pacific Islander 12 (4)  Other 17 (6) Female caregiver’s highest education  Less than HS 12 (6)  HS/GED 19 (9)  Some College 63 (31)  College 111 (54) Child hearing level  Mild/unilateral 26 (10)  Moderate/Moderate 80 (30)  Severe/profound 56 (21)  CI 104 (39) Caregiver hearing status  Hearing 218 (95)  Deaf or HH 49 (05) Child school type  Mainstream without DHH program 122 (45)  Mainstream with DHH program 78 (29)  School for the deaf (day and residential) 65 (24)  Home school 6 (2) Caregiver-reported primary communication method by DHH child at home  Speech 177 (66)  Sign 54 (20)  Equal usage 38 (14) Note. Sample sizes may not sum to 271 due to missing values. The Final CROBE-DHH Instruments The resulting instruments contain items considered potentially verifiable or observable by others for two age groups and showed sufficient measurement properties: 5–7 years (11 items) and 8–10 years (15 items). The draft and final items appear in Tables 3 and 4. The final items are listed in an Appendix to the article. The CROBE-DHH items use a 5-point Likert scale with adjectival anchors (Never, Rarely, Sometimes, Often, Very Often) on each of the five responses. The final instruments are available at www.seaqolgroup.org. Table 3. Descriptive and test-retest statistics for 7-day recall items by age group Communication 5–7 years (n = 126) 8–10 years (n = 145) mean (SD) ICC (n = 14) mean (SD) ICC (n = 23) Had a hard time communicating with family members because s/he is deaf or hard of hearing. N/A N/A 1.51 (1.25) .91 Missed out on things that were said during family conversations because s/he is deaf or hard of hearing. 2.01 (1.30) .94 2.04 (1.24) .88 Had to try several ways to communicate with people to help them understand her/him. 1.47 (1.25) .91 1.53 (1.30) .85 Social Started conversations with children her/his age. 3.04 (1.13) .95 3.01 (1.03) .70 Tell you (or another caregiver) what went on during his/her day. 2.98 (.99) .70 3.11 (.90) .89 Participated in family conversations at meal times in the home. 3.33 (.98) .79 3.41 (.80) .75 Spent time alone away from family activities because s/he is deaf or hard of hearing. .37 (.68) .95 .41 (.83) .58 Communication 5–7 years (n = 126) 8–10 years (n = 145) mean (SD) ICC (n = 14) mean (SD) ICC (n = 23) Had a hard time communicating with family members because s/he is deaf or hard of hearing. N/A N/A 1.51 (1.25) .91 Missed out on things that were said during family conversations because s/he is deaf or hard of hearing. 2.01 (1.30) .94 2.04 (1.24) .88 Had to try several ways to communicate with people to help them understand her/him. 1.47 (1.25) .91 1.53 (1.30) .85 Social Started conversations with children her/his age. 3.04 (1.13) .95 3.01 (1.03) .70 Tell you (or another caregiver) what went on during his/her day. 2.98 (.99) .70 3.11 (.90) .89 Participated in family conversations at meal times in the home. 3.33 (.98) .79 3.41 (.80) .75 Spent time alone away from family activities because s/he is deaf or hard of hearing. .37 (.68) .95 .41 (.83) .58 Note. Items reported on a 5-point response scale: 0 = never/1 = rarely/2 = sometimes/3 = often/4 = very often. Table 3. Descriptive and test-retest statistics for 7-day recall items by age group Communication 5–7 years (n = 126) 8–10 years (n = 145) mean (SD) ICC (n = 14) mean (SD) ICC (n = 23) Had a hard time communicating with family members because s/he is deaf or hard of hearing. N/A N/A 1.51 (1.25) .91 Missed out on things that were said during family conversations because s/he is deaf or hard of hearing. 2.01 (1.30) .94 2.04 (1.24) .88 Had to try several ways to communicate with people to help them understand her/him. 1.47 (1.25) .91 1.53 (1.30) .85 Social Started conversations with children her/his age. 3.04 (1.13) .95 3.01 (1.03) .70 Tell you (or another caregiver) what went on during his/her day. 2.98 (.99) .70 3.11 (.90) .89 Participated in family conversations at meal times in the home. 3.33 (.98) .79 3.41 (.80) .75 Spent time alone away from family activities because s/he is deaf or hard of hearing. .37 (.68) .95 .41 (.83) .58 Communication 5–7 years (n = 126) 8–10 years (n = 145) mean (SD) ICC (n = 14) mean (SD) ICC (n = 23) Had a hard time communicating with family members because s/he is deaf or hard of hearing. N/A N/A 1.51 (1.25) .91 Missed out on things that were said during family conversations because s/he is deaf or hard of hearing. 2.01 (1.30) .94 2.04 (1.24) .88 Had to try several ways to communicate with people to help them understand her/him. 1.47 (1.25) .91 1.53 (1.30) .85 Social Started conversations with children her/his age. 3.04 (1.13) .95 3.01 (1.03) .70 Tell you (or another caregiver) what went on during his/her day. 2.98 (.99) .70 3.11 (.90) .89 Participated in family conversations at meal times in the home. 3.33 (.98) .79 3.41 (.80) .75 Spent time alone away from family activities because s/he is deaf or hard of hearing. .37 (.68) .95 .41 (.83) .58 Note. Items reported on a 5-point response scale: 0 = never/1 = rarely/2 = sometimes/3 = often/4 = very often. Table 4. Descriptive and test-retest statistics for 4-week recall items by age group Communication 5–7 years (n = 126) 8–10 years (n = 145) mean (SD) ICC (n = 20) mean (SD) ICC (n = 19) Communicated comfortably with children outside the home. 3.23 (1.04) .69 3.15 (1.02) .62 Communicated for him/herself outside of home and school. N/A N/A 3.16 (1.11) .51 Gave up on something that s/he wanted to do because of problems communicating. .89 (1.21) .65 .96 (1.18) .67 Was left out of activities because s/he could not follow what was going on because s/he is deaf or hard of hearing. .84 (1.00) .46a 1.07 (1.15) .66 A lack of communication support limited child’s ability to participate in activities outside of school. .78 (1.11) .40a .87 (1.12) .65 Social Tell you (or another caregiver) that s/he is having a hard time because s/he is deaf or hard of hearing. .50 (.86) .38a 1.00 (1.16) .08a Spoke up for him/herself as someone who is deaf or hard of hearing. N/A N/A 1.75 (1.31) .22a Talked about his/her best friend. 2.78 (1.35) .48a 2.68 (1.36) .69 Participated in family conversations at large family gatherings. 2.85 (1.43) .62 2.82 (1.22) .30a Participated in activities outside of school with other children who are deaf or hard of hearing. 1.23 (1.39) .5a 1.30 (1.41) .38a Was bullied because s/he is deaf or hard of-hearing DHH. .17 (.49) .53 .45 (.95) .38a Was made fun of because is DHH. .23 (.54) .49a .54 (.96) .41a Spent time enjoying him/herself with children his/her age outside of school. 2.88 (1.16) .73 3.06 (1.03) .54 Got upset because s/he did not understand what others were saying. 1.43 (1.26) .43a 1.54 (1.24) .50a Caregiver had to take over communication for child outside of the home. N/A N/A 1.70 (1.36) .56 Communicated comfortably with siblings (ceiling effect). 3.84 (.61) .40a 3.72 (.84) .08a Communication 5–7 years (n = 126) 8–10 years (n = 145) mean (SD) ICC (n = 20) mean (SD) ICC (n = 19) Communicated comfortably with children outside the home. 3.23 (1.04) .69 3.15 (1.02) .62 Communicated for him/herself outside of home and school. N/A N/A 3.16 (1.11) .51 Gave up on something that s/he wanted to do because of problems communicating. .89 (1.21) .65 .96 (1.18) .67 Was left out of activities because s/he could not follow what was going on because s/he is deaf or hard of hearing. .84 (1.00) .46a 1.07 (1.15) .66 A lack of communication support limited child’s ability to participate in activities outside of school. .78 (1.11) .40a .87 (1.12) .65 Social Tell you (or another caregiver) that s/he is having a hard time because s/he is deaf or hard of hearing. .50 (.86) .38a 1.00 (1.16) .08a Spoke up for him/herself as someone who is deaf or hard of hearing. N/A N/A 1.75 (1.31) .22a Talked about his/her best friend. 2.78 (1.35) .48a 2.68 (1.36) .69 Participated in family conversations at large family gatherings. 2.85 (1.43) .62 2.82 (1.22) .30a Participated in activities outside of school with other children who are deaf or hard of hearing. 1.23 (1.39) .5a 1.30 (1.41) .38a Was bullied because s/he is deaf or hard of-hearing DHH. .17 (.49) .53 .45 (.95) .38a Was made fun of because is DHH. .23 (.54) .49a .54 (.96) .41a Spent time enjoying him/herself with children his/her age outside of school. 2.88 (1.16) .73 3.06 (1.03) .54 Got upset because s/he did not understand what others were saying. 1.43 (1.26) .43a 1.54 (1.24) .50a Caregiver had to take over communication for child outside of the home. N/A N/A 1.70 (1.36) .56 Communicated comfortably with siblings (ceiling effect). 3.84 (.61) .40a 3.72 (.84) .08a Note. Items on a 5-point response scale: 0 = never/1 = rarely/2 = sometimes/3 = often/4 = very often. N/A indicates items administered only to caregivers of children ages 8–10 years. Item “communicated comfortable with siblings” was dropped due to high response ceiling. aThis item was deleted from final instrument. Table 4. Descriptive and test-retest statistics for 4-week recall items by age group Communication 5–7 years (n = 126) 8–10 years (n = 145) mean (SD) ICC (n = 20) mean (SD) ICC (n = 19) Communicated comfortably with children outside the home. 3.23 (1.04) .69 3.15 (1.02) .62 Communicated for him/herself outside of home and school. N/A N/A 3.16 (1.11) .51 Gave up on something that s/he wanted to do because of problems communicating. .89 (1.21) .65 .96 (1.18) .67 Was left out of activities because s/he could not follow what was going on because s/he is deaf or hard of hearing. .84 (1.00) .46a 1.07 (1.15) .66 A lack of communication support limited child’s ability to participate in activities outside of school. .78 (1.11) .40a .87 (1.12) .65 Social Tell you (or another caregiver) that s/he is having a hard time because s/he is deaf or hard of hearing. .50 (.86) .38a 1.00 (1.16) .08a Spoke up for him/herself as someone who is deaf or hard of hearing. N/A N/A 1.75 (1.31) .22a Talked about his/her best friend. 2.78 (1.35) .48a 2.68 (1.36) .69 Participated in family conversations at large family gatherings. 2.85 (1.43) .62 2.82 (1.22) .30a Participated in activities outside of school with other children who are deaf or hard of hearing. 1.23 (1.39) .5a 1.30 (1.41) .38a Was bullied because s/he is deaf or hard of-hearing DHH. .17 (.49) .53 .45 (.95) .38a Was made fun of because is DHH. .23 (.54) .49a .54 (.96) .41a Spent time enjoying him/herself with children his/her age outside of school. 2.88 (1.16) .73 3.06 (1.03) .54 Got upset because s/he did not understand what others were saying. 1.43 (1.26) .43a 1.54 (1.24) .50a Caregiver had to take over communication for child outside of the home. N/A N/A 1.70 (1.36) .56 Communicated comfortably with siblings (ceiling effect). 3.84 (.61) .40a 3.72 (.84) .08a Communication 5–7 years (n = 126) 8–10 years (n = 145) mean (SD) ICC (n = 20) mean (SD) ICC (n = 19) Communicated comfortably with children outside the home. 3.23 (1.04) .69 3.15 (1.02) .62 Communicated for him/herself outside of home and school. N/A N/A 3.16 (1.11) .51 Gave up on something that s/he wanted to do because of problems communicating. .89 (1.21) .65 .96 (1.18) .67 Was left out of activities because s/he could not follow what was going on because s/he is deaf or hard of hearing. .84 (1.00) .46a 1.07 (1.15) .66 A lack of communication support limited child’s ability to participate in activities outside of school. .78 (1.11) .40a .87 (1.12) .65 Social Tell you (or another caregiver) that s/he is having a hard time because s/he is deaf or hard of hearing. .50 (.86) .38a 1.00 (1.16) .08a Spoke up for him/herself as someone who is deaf or hard of hearing. N/A N/A 1.75 (1.31) .22a Talked about his/her best friend. 2.78 (1.35) .48a 2.68 (1.36) .69 Participated in family conversations at large family gatherings. 2.85 (1.43) .62 2.82 (1.22) .30a Participated in activities outside of school with other children who are deaf or hard of hearing. 1.23 (1.39) .5a 1.30 (1.41) .38a Was bullied because s/he is deaf or hard of-hearing DHH. .17 (.49) .53 .45 (.95) .38a Was made fun of because is DHH. .23 (.54) .49a .54 (.96) .41a Spent time enjoying him/herself with children his/her age outside of school. 2.88 (1.16) .73 3.06 (1.03) .54 Got upset because s/he did not understand what others were saying. 1.43 (1.26) .43a 1.54 (1.24) .50a Caregiver had to take over communication for child outside of the home. N/A N/A 1.70 (1.36) .56 Communicated comfortably with siblings (ceiling effect). 3.84 (.61) .40a 3.72 (.84) .08a Note. Items on a 5-point response scale: 0 = never/1 = rarely/2 = sometimes/3 = often/4 = very often. N/A indicates items administered only to caregivers of children ages 8–10 years. Item “communicated comfortable with siblings” was dropped due to high response ceiling. aThis item was deleted from final instrument. Study 2: CROBE-DHH Measurement Properties We conducted a cross-sectional study to evaluate measurement properties of the newly developed instruments. Participants came from both the Seattle area and University of Colorado-Boulder with institutional review board approval from both sites. Study flyers and other advertisements were disseminated through schools, clinics, and advocacy groups. Recruitment was conducted by a specialist in hearing studies connected to the University of Washington. Caregivers were considered ineligible if they reported attention, vision or learning difficulties that would make them unable to complete the survey (N = 0); if they refused to complete the questionnaire after being screened (n = 36); or if they reported that their child had medical or mental health conditions that were of greater impact on their life than DHH, or had unilateral hearing impairment (n = 12). Of the 271 caregivers of DHH children who participated, we received complete audiology reports for 202 (75%) of the children, and an additional 47 (17%) incomplete audiograms were obtained from the child’s clinic or school. Hearing status was imputed by study researchers for remaining incomplete or missing audiogram data (n = 22), from information provided in caregiver telephone screener and study survey. Prior to analyzing the data, out-of-range and missing values were checked against the surveys completed by the participants and inconsistencies were corrected. After data cleaning, descriptive statistics were computed, including item means, standard deviations, percent of responses at the floor and ceiling, skewness, kurtosis and inter-item Pearson product-moment correlation coefficients. Test-Retest Reliability About 40 caregivers completed a 7-day test-retest on those items with a 7-day recall, and another 40 caregivers completed a 4-week test-retest for those items with the corresponding recall period. Measurement Structure We used standard item reduction methods for identifying items with a high level of missing data (>5%) and high ceiling or floor effects (>80% in bottom or top category). We applied principal components analysis using SPSS with Promax rotation to look at any identifiable linear combinations of items. Results Sample for Measurement Properties Study (N = 419) Caregivers were recruited to participate with 385 passing the study screen. Sixty-six (20%) eligible caregivers were categorized as lost-to-follow-up a final sample size of 271. About 120 (44%) caregivers completed the questionnaire by paper and pencil in English, 126 (46%) via web-based administration in English, 10 (4%) using an ASL DVD self-administered version, 5 (2%) via interviewer-administered ASL DVD version, and 10 (4%) completed the Spanish language version by paper and pencil. The sample characteristics can be found in Table 2. Study of Measurement Properties (n = 271) Caregiver reporters were primarily female (92%) and college educated (54%) of white (71%) children 8–10 years of age (54%), with cochlear implants (39%) or moderate to moderate-severe (30%) hearing loss in mainstream schools without DHH programs. Caregivers in Study 2 were from households in the Western region of the US (48%), where both caregivers were hearing (50%) and used English (61%) as the primary language in the home was spoken English. No differences were observed by mode of administration of the questionnaires. Measurement Structure Surveys administered to caregivers of both age groups at baseline and 7 days demonstrated good reliability over 7-day recall period (ICC ≥ .70) (Table 3). For items with 4-week recall period only items with fair reliability (ICC ≥ .50) in both age groups were retained (Table 4). For children 5–7 years and 8–10 years of age with DHH, no significant differences were seen in the 7-day recall mean item scores among the hearing level categories (Table 5). For children 8–10 years of age with DHH, significant differences were observed among hearing level categories in the 4-week recall item mean scores (Table 6). Participants with milder hearing impairment were reported to have less problem with communicating with family members or missing family conversations. The numbers in each hearing level category were small and did not permit pairwise multiple testing among hearing categories with straightforward interpretation. Differences were small in all items across hearing categories. Table 5. Descriptive statistics of 7-day recall items by hearing level for ages 5–7 years Communication Mild Moderate/moderate to severe Severe/profound Cochlear implant Sig levelb n = 13 n = 35 n = 25 n = 51 Hard time communicating with family members. N/A N/A N/A N/A Missed out on things that were said during family conversations because s/he is deaf or hard of hearing. 2.54 2.00 1.56 2.10 .229 (.97) (1.24) (1.47) (1.30) Had to try several ways to communicate with people to help them understand her/him. 1.54 1.26 1.71a 1.51 .876 (1.56) (1.04) (1.43) (1.22) Social Started conversations with children his/her age. 3.00 3.29 3.00 2.90 .167 (1.23) (.96) (1.19) (1.19) Tell you (or another caregiver) what went on during his/her day. 3.38 3.17 2.80 2.88 .294 (.77) (1.04) (1.08) (.91) Participated in family conversations at meal times in the home. 3.77 3.51 3.12 3.18 .501 (.44) (.82) (1.17) (1.05) Spent time alone away from family activities because s/he is deaf or hard of hearing. .77 .17 .36 .41 .298 (1.09) (1.09) (.70) (.64) Communication Mild Moderate/moderate to severe Severe/profound Cochlear implant Sig levelb n = 13 n = 35 n = 25 n = 51 Hard time communicating with family members. N/A N/A N/A N/A Missed out on things that were said during family conversations because s/he is deaf or hard of hearing. 2.54 2.00 1.56 2.10 .229 (.97) (1.24) (1.47) (1.30) Had to try several ways to communicate with people to help them understand her/him. 1.54 1.26 1.71a 1.51 .876 (1.56) (1.04) (1.43) (1.22) Social Started conversations with children his/her age. 3.00 3.29 3.00 2.90 .167 (1.23) (.96) (1.19) (1.19) Tell you (or another caregiver) what went on during his/her day. 3.38 3.17 2.80 2.88 .294 (.77) (1.04) (1.08) (.91) Participated in family conversations at meal times in the home. 3.77 3.51 3.12 3.18 .501 (.44) (.82) (1.17) (1.05) Spent time alone away from family activities because s/he is deaf or hard of hearing. .77 .17 .36 .41 .298 (1.09) (1.09) (.70) (.64) aSample size was equal to 24 not 25. bOne-way analysis of variance. Table 5. Descriptive statistics of 7-day recall items by hearing level for ages 5–7 years Communication Mild Moderate/moderate to severe Severe/profound Cochlear implant Sig levelb n = 13 n = 35 n = 25 n = 51 Hard time communicating with family members. N/A N/A N/A N/A Missed out on things that were said during family conversations because s/he is deaf or hard of hearing. 2.54 2.00 1.56 2.10 .229 (.97) (1.24) (1.47) (1.30) Had to try several ways to communicate with people to help them understand her/him. 1.54 1.26 1.71a 1.51 .876 (1.56) (1.04) (1.43) (1.22) Social Started conversations with children his/her age. 3.00 3.29 3.00 2.90 .167 (1.23) (.96) (1.19) (1.19) Tell you (or another caregiver) what went on during his/her day. 3.38 3.17 2.80 2.88 .294 (.77) (1.04) (1.08) (.91) Participated in family conversations at meal times in the home. 3.77 3.51 3.12 3.18 .501 (.44) (.82) (1.17) (1.05) Spent time alone away from family activities because s/he is deaf or hard of hearing. .77 .17 .36 .41 .298 (1.09) (1.09) (.70) (.64) Communication Mild Moderate/moderate to severe Severe/profound Cochlear implant Sig levelb n = 13 n = 35 n = 25 n = 51 Hard time communicating with family members. N/A N/A N/A N/A Missed out on things that were said during family conversations because s/he is deaf or hard of hearing. 2.54 2.00 1.56 2.10 .229 (.97) (1.24) (1.47) (1.30) Had to try several ways to communicate with people to help them understand her/him. 1.54 1.26 1.71a 1.51 .876 (1.56) (1.04) (1.43) (1.22) Social Started conversations with children his/her age. 3.00 3.29 3.00 2.90 .167 (1.23) (.96) (1.19) (1.19) Tell you (or another caregiver) what went on during his/her day. 3.38 3.17 2.80 2.88 .294 (.77) (1.04) (1.08) (.91) Participated in family conversations at meal times in the home. 3.77 3.51 3.12 3.18 .501 (.44) (.82) (1.17) (1.05) Spent time alone away from family activities because s/he is deaf or hard of hearing. .77 .17 .36 .41 .298 (1.09) (1.09) (.70) (.64) aSample size was equal to 24 not 25. bOne-way analysis of variance. Table 6. Descriptive statistics of 7-day recall items by hearing level for ages 8–10 years Communication Mild Moderate/moderate to severe Severe/profound Cochlear implant Sig levela n = 13 n = 45 n = 31 n = 53 Had a hard time communicating with family members because s/he is deaf or hard of hearing. 1.85 1.75 1.45 1.47 .007 (.99) (1.33) (1.14) (1.23) Missed out on things that were said during family conversations because s/he is deaf or hard of hearing. 2.23 2.18 1.29 2.04 .003 (.83) (1.30) (1.35) (1.25) Had to try several ways to communicate with people to help them understand her/him. 1.23 1.60 1.77 1.51 .125 (1.42) (1.21) (1.09) (1.28) Social Started conversations with children his/her age. 3.00 2.84 3.29 2.96 .769 (1.08) (1.09) (.82) (1.09) Tell you what went on during his/her day. 3.15 2.98 3.23 3.17 .904 (.99) (.96) (.84) (.87) Participated in family conversations at meal times in the home. 3.77 3.24 3.55 3.36 .476 (.44) (.93) (.68) (.79) Spent time alone away from family activities because s/he is deaf or hard of hearing. .08 .67 .32 .36 .053 (.28) (1.09) (.70) (.71) Communication Mild Moderate/moderate to severe Severe/profound Cochlear implant Sig levela n = 13 n = 45 n = 31 n = 53 Had a hard time communicating with family members because s/he is deaf or hard of hearing. 1.85 1.75 1.45 1.47 .007 (.99) (1.33) (1.14) (1.23) Missed out on things that were said during family conversations because s/he is deaf or hard of hearing. 2.23 2.18 1.29 2.04 .003 (.83) (1.30) (1.35) (1.25) Had to try several ways to communicate with people to help them understand her/him. 1.23 1.60 1.77 1.51 .125 (1.42) (1.21) (1.09) (1.28) Social Started conversations with children his/her age. 3.00 2.84 3.29 2.96 .769 (1.08) (1.09) (.82) (1.09) Tell you what went on during his/her day. 3.15 2.98 3.23 3.17 .904 (.99) (.96) (.84) (.87) Participated in family conversations at meal times in the home. 3.77 3.24 3.55 3.36 .476 (.44) (.93) (.68) (.79) Spent time alone away from family activities because s/he is deaf or hard of hearing. .08 .67 .32 .36 .053 (.28) (1.09) (.70) (.71) aUsing one-way analysis of variance. Table 6. Descriptive statistics of 7-day recall items by hearing level for ages 8–10 years Communication Mild Moderate/moderate to severe Severe/profound Cochlear implant Sig levela n = 13 n = 45 n = 31 n = 53 Had a hard time communicating with family members because s/he is deaf or hard of hearing. 1.85 1.75 1.45 1.47 .007 (.99) (1.33) (1.14) (1.23) Missed out on things that were said during family conversations because s/he is deaf or hard of hearing. 2.23 2.18 1.29 2.04 .003 (.83) (1.30) (1.35) (1.25) Had to try several ways to communicate with people to help them understand her/him. 1.23 1.60 1.77 1.51 .125 (1.42) (1.21) (1.09) (1.28) Social Started conversations with children his/her age. 3.00 2.84 3.29 2.96 .769 (1.08) (1.09) (.82) (1.09) Tell you what went on during his/her day. 3.15 2.98 3.23 3.17 .904 (.99) (.96) (.84) (.87) Participated in family conversations at meal times in the home. 3.77 3.24 3.55 3.36 .476 (.44) (.93) (.68) (.79) Spent time alone away from family activities because s/he is deaf or hard of hearing. .08 .67 .32 .36 .053 (.28) (1.09) (.70) (.71) Communication Mild Moderate/moderate to severe Severe/profound Cochlear implant Sig levela n = 13 n = 45 n = 31 n = 53 Had a hard time communicating with family members because s/he is deaf or hard of hearing. 1.85 1.75 1.45 1.47 .007 (.99) (1.33) (1.14) (1.23) Missed out on things that were said during family conversations because s/he is deaf or hard of hearing. 2.23 2.18 1.29 2.04 .003 (.83) (1.30) (1.35) (1.25) Had to try several ways to communicate with people to help them understand her/him. 1.23 1.60 1.77 1.51 .125 (1.42) (1.21) (1.09) (1.28) Social Started conversations with children his/her age. 3.00 2.84 3.29 2.96 .769 (1.08) (1.09) (.82) (1.09) Tell you what went on during his/her day. 3.15 2.98 3.23 3.17 .904 (.99) (.96) (.84) (.87) Participated in family conversations at meal times in the home. 3.77 3.24 3.55 3.36 .476 (.44) (.93) (.68) (.79) Spent time alone away from family activities because s/he is deaf or hard of hearing. .08 .67 .32 .36 .053 (.28) (1.09) (.70) (.71) aUsing one-way analysis of variance. The principal components analyses did not reveal any clear item structure for either age-related module. The average eigen value for the PROMAX rotation for the parent observations of 5–7 years old children was .48 with a range from −.275 to 5.13. The average eigen value for parent observations of the 8–10 years old children was .62 with a range from −.23 to 7.4. Discussion This manuscript reports on the first guideline-driven caregiver-reported observational indicators (ObsROs) for children aged 5–10 who are deaf or hard of hearing (DHH) as reported by parents and across treatment modalities. They include modules reported by caregivers of younger children age 5–7 and older children age 8–10. We found that caregivers were able to easily report on behaviors they could directly observe in relation to their children’s life. The items reflect what caregivers and clinicians considered important to the quality of life of children with hearing impairment, notably and not surprisingly communication, particularly within the family context, and social interaction. We intentionally did not include caregiver assessment of children’s inner feelings which are known only to the children themselves. It is likely, however, that some of the observable items may well correspond to children’s subjective feelings, such as those that address what concerns children report to their parents. Caregivers selected domains in the first study that reflected inclusion of youth with DHH in family life as well as inclusion outside the home and in activities that reflect independence appropriate to their age. Caregivers did not report often that their children were left out of activities because of DHH. For both age groups, however, caregivers reported more frequent difficulty amongst these youth in missing out on family conversations. Specific techniques for increasing inclusion in family conversations may be suggested by this finding. In the social realm, few youth who are DHH spend time alone away from the family. Building independence through providing opportunities for time away from family may be an important strategy for interventions at a group and individual level. The field-testing of the two modules yielded valuable results in terms of providing sufficient evidence for carrying a set of items forward for caregiver reports concerning children in both age ranges. Test-retest results indicated good reproducibility for all items with 7-day recall. Four of the items in each age range had ICC’s near or above .90 suggesting they might be used in clinical practice where high reproducibility is necessary. These items addressed family conversations and having a hard time or missing out on things said during these conversations. These results confirm those in older children where higher youth perception of their ability to understand parents’ communication was significantly correlated with perceived quality of life as well as lower reported depressive symptoms and lower perceived stigma (Kushalnagar et al., 2011). The items with 7-day recall were also easily observable because of the close interaction in the home rather than events observed outside the home. Poor test-retest results for multiple items with 4-week recall may well be due to the lack of opportunity of caregivers to observe these events, regardless of the period of time for the observations. For example, parents may not have the opportunity to observe their child being made fun of because of being DHH. Interestingly, reproducibility was higher, though not very high, for reporting that the child 5–7 was bullied because of being DHH, possibly because of heightened caregiver sensitivity to watching for this event. Test-retest was also not high for many items dependent on the child telling the parent what was going on in their life. Some children, regardless of hearing status, do not discuss life events with their parents. Because parents considered these items important for assessing their children, we retained those items requiring children reports to their caregivers that showed sufficient measurement properties and had promise such as talking about their best friend for children 8–10. It is not surprising that we did not find a clear measurement structure with domains for either DHH module in children. Observation-based reports of behaviors or events that may not hang together in any conceptual structure, similar to those found for attitudinal or perceptual measures not related to discrete events or behaviors. Although we have grouped the items as communication and social, all items are social. The use of these items individually in a profile is likely the best approach unless further testing with a larger sample by hearing status and possibly other communication variables such as mode of communication and parent hearing status. Individual items are easily interpretable and can be used to identify areas where parents observe their children having difficulties in communication and social interaction. These ObsROs for children with DHH are part of a larger project to create age-appropriate, disease-specific reported outcomes across the life span. To date we have developed and validated a self-report instrument for adolescents age 11 and above (Patrick et al., 2011). Future work with CROBE-DHH would include use of the items in an intervention or longitudinal study to evaluate change over time and interpretation of that change. A limitation of this study is the purposive nature of the sample, though drawn from more than one geographical site in Study 2. Approaching a broader spectrum of caregivers across multiple sites would be advisable. To successfully implement these instruments in future studies may require a more formal observational training protocol for parents on how to systematically observe and report behaviors and events. Finally one of the most important aspects of observer measures is inter-observer reliability (Yoder & Symons, 2010). We would also hope to conduct an inter-rater reliability assessment on the items in future research. We did not have sufficient numbers to investigate parent hearing status in relation to family communication, but this is an important are for future investigations using these instruments. Also as found in other studies with adolescents, technology type and school setting were associated with self-reported quality of life specific to DHH (Meyer et al., 2013; Schick et al., 2013). These may also apply to observational measures in children in different school settings. Conclusion We have developed two caregiver-reported observational instruments that may prove useful in evaluating the status of younger children who are deaf or hard of hearing. These instruments potentially fill an important unmet need in providing ways to evaluate the effectiveness of treatment, including surgical, behavioral, and environmental on the quality of life of children with DHH. Increased attention to younger children is an important goal in research and practice, as early interventions may provide a higher quality of life for children with hearing difficulties as they enter adolescence and adulthood. Funding This research was funded by a grant to D.L.P., PhD, MSPH (PI) from the National Institute on Deafness and Other Communication Disorders (R01 DC008144). We wish to acknowledge the special contributions of our co-investigator, the late John Niparko, MD and other expert advisors primarily from the Seattle area who freely shared their views on children and youth who are deaf or hard of hearing and commented on Caregiver Report of Behaviors and Events - Deaf or Hard of Hearing (CROBE-DHH) items. Acknowledgements We thank James Kelley for help in preparing the manuscript. The CROBE-DHH is available for use by researchers, educators, and others in paper and pencil form (www.seaqolgroup.org). References Ahlert , I. A. , & Greeff , A. P. ( 2012 ). Resilience factors associated with adaptation in families with deaf and hard of hearing children . Am Ann Deaf , 157 , 391 – 404 . https://doi.org/10.1353/aad.2012.1629 Google Scholar CrossRef Search ADS PubMed Anderson , D. , & Reilly , J. 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Readme first for a user’s guide to qualitative methods . Los Angeles, CA : SAGE Publications, Inc . Schick , B. , Skalicky , A. , Edwards , T. , Kushalnagar , P. , Topolski , T. , & Patrick , D. ( 2013 ). School placement and perceived quality of life in youth who are deaf or hard of hearing . J Deaf Stud Deaf Educ , 18 , 47 – 61 . doi:10.1093/deafed/ens039 Google Scholar CrossRef Search ADS PubMed SeaQol Group, University of Washington ( 2017 ). Instruments. Retrieved from http://www.seaqolgroup.org United States Food and Drug Administration ( 2009 ). Guidance for industry patient-reported outcome measures: Use in medical product development to support labeling claims. Retrieved from http://www.fda.gov/ohrms/dockets/98fr/06d-0044-gdl0001.pdf Walton , M. K. , Powers , J. H. , Hobart , J. , Patrick , D. , Marquis , P. , & Vamvakas , S. ( 2015 ). Clinical outcome assessments: Conceptual foundation-report of the ISPOR clinical outcomes assessment—Emerging good practices for outcomes research task force . Value Health , 18 , 741 – 752 . doi:10.1016/j.jval.2015.08.006 Google Scholar CrossRef Search ADS PubMed Willis , G. B. ( 1999 ). Cognitive interviewing: A “how to” guide, from the short course “Reducing Survey Error through Research on the Cognitive and Decision Processes in Surveys”. Paper presented at the meeting of the American Statistical Association. Yoder , P. , & Symons , F. ( 2010 ). Observational measurement of behavior . New York, NY : Springer . Appendix Youth Deafness and Hard-of-Hearing Behaviors and Events (CROBE-DHH) Parents/caregivers of children ages 5–7 During thepast 7 daysconcerning your child who is deaf or hard of hearing: How often did you observe or learn that your child missed out on things that were said during family conversations because s/he is deaf or hard of hearing? During thepast 7 daysconcerning your child who is deaf or hard of hearing: How often did you observe or learn that your child had to try several ways to communicate with people to help them understand her/him? During thepast 7 daysconcerning your child who is deaf or hard of hearing: How often did you observe or learn that your child started conversations with children his/her age? During thepast 7 daysconcerning your child who is deaf or hard of hearing: How often did your child tell you (or another parent/caregiver) what went on during his/her day? During thepast 7 daysconcerning your child who is deaf or hard of hearing: How often did you observe or learn that your child participated in family conversations at meal times in the home? During thepast 7 daysconcerning your child who is deaf or hard of hearing: How often did you observe or learn that your child spent time alone away from family activities because s/he is deaf or hard of hearing? During thepast 4 weeksconcerning your child who is deaf or hard of hearing: How often did you observe or learn that your child communicated comfortably with children outside the home? During thepast 4 weeksconcerning your child who is deaf or hard of hearing: How often did you observe or learn that your child gave up on something that s/he wanted to do because of problems communicating? During thepast 4 weeksconcerning your child who is deaf or hard of hearing: How often did you observe or learn that your child participated in family conversations at large family gatherings? During thepast 4 weeksconcerning your child who is deaf or hard of hearing: How often did you observe or learn that your child was bullied because s/he is deaf or hard of hearing? During thepast 4 weeksconcerning your child who is deaf or hard of hearing: How often did you observe or learn that your child spent time enjoying him/herself with children his/her age outside of school? Items use the following response scale: 0 = Never, 1 = Rarely (Once during week), 2 = Sometimes (2-3 times), 3 = Often (Daily), 4 = Very Often (More than once a day). Youth Deafness and Hard-of-Hearing Behaviors and Events (CROBE-DHH) Parents/caregivers of children ages 8–10 During thepast 7 daysconcerning your child who is deaf or hard of hearing: How often did you observe or learn that your child had a hard time communicating with family members because s/he is deaf or hard of hearing? During thepast 7 daysconcerning your child who is deaf or hard of hearing: How often did you observe or learn that your child missed out on things that were said during family conversations because s/he is deaf or hard of hearing? During thepast 7 daysconcerning your child who is deaf or hard of hearing: How often did you observe or learn that your child had to try several ways to communicate with people to help them understand her/him? During thepast 7 daysconcerning your child who is deaf or hard of hearing: How often did you observe or learn that your child started conversations with children his/her age? During thepast 7 daysconcerning your child who is deaf or hard of hearing: How often did your child tell you (or another parent/caregiver) what went on during his/her day? During thepast 7 daysconcerning your child who is deaf or hard of hearing: How often did you observe or learn that your child participated in family conversations at meal times in the home? During thepast 7 daysconcerning your child who is deaf or hard of hearing: How often did you observe or learn that your child spent time alone away from family activities because s/he is deaf or hard of hearing? During thepast 4 weeksconcerning your child who is deaf or hard of hearing: How often did you observe or learn that your child communicated comfortably with children outside the home? During thepast 4 weeksconcerning your child who is deaf or hard of hearing: How often did you observe or learn that your child communicated for him/herself outside of the home and school? During thepast 4 weeksconcerning your child who is deaf or hard of hearing: How often did you observe or learn that your child gave up on something that s/he wanted to do because of problems communicating? During thepast 4 weeksconcerning your child who is deaf or hard of hearing: How often did you observe or learn that your child was left out of activities because s/he could not follow what was going on because s/he is deaf or hard of hearing? During thepast 4 weeksconcerning your child who is deaf or hard of hearing: How often did you observe or learn that a lack of communication support limited your child’s ability to participate in activities outside of school? During thepast 4 weeksconcerning your child who is deaf or hard of hearing: How often did you observe or learn that your child talked about his/her best friend? During thepast 4 weeksconcerning your child who is deaf or hard of hearing: How often did you observe or learn that your child spent time enjoying him/herself with children his/her age outside of school? During thepast 4 weeksconcerning your child who is deaf or hard of hearing: How often did you (or another parent/caregiver) have to take over communication for your child outside of the home? Items use the following response scale: 0 = Never, 1 = Rarely (Once during week), 2 = Sometimes (2-3 times), 3 = Often (Daily), 4 = Very Often (More than once a day). NOTE: The CROBE-DHH must not be reproduced or utilized in any manner without prior approval of the Seattle Quality of Life Group and the authors. Requests for permission to utilize the CROBE-DHH should be the following: Seattle Quality of Life Group Attn: Instrument Coordinator Box 359455, University of Washington Seattle, WA 98195-9455 seaqol@uw.edu www.seaqolgroup.org © The Author(s) 2018. Published by Oxford University Press. All rights reserved. For Permissions, please email: journals.permissions@oup.com. This article is published and distributed under the terms of the Oxford University Press, Standard Journals Publication Model (https://academic.oup.com/journals/pages/about_us/legal/notices) http://www.deepdyve.com/assets/images/DeepDyve-Logo-lg.png The Journal of Deaf Studies and Deaf Education Oxford University Press

Caregiver-Reported Indicators of Communication and Social Functioning for Young Children Who Are Deaf or Hard of Hearing

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Oxford University Press
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© The Author(s) 2018. Published by Oxford University Press. All rights reserved. For Permissions, please email: journals.permissions@oup.com.
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1081-4159
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1465-7325
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10.1093/deafed/eny006
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Abstract

Abstract We elicited caregiver-reported observations of children aged 5–10 who were deaf or hard of hearing (DHH) that resulted in two age-specific instruments: Caregiver Report of Behaviors and Events (CROBE-DHH 5–7 and 8–10). These new instruments record observations on communication and social behaviors/events. In Study 1, 36 caregivers provided qualitative data on important content on what they were able to observe for instrument development and in Study 2, 271 provided data for studying cross-sectional measurement properties. Two modules resulted in 11 items for children age 5–7 and 15 items for children 8–10 years. Items showing good 7-day reproducibility (ICC over .70) and fair 4-week reproducibility (ICC over .50) were retained. Children with milder hearing loss received higher (better) scores. Items did not distinguish between those with or without cochlear implants. Analyses suggest that the instruments are best used as individual indicator items. In both age groups, caregivers reported youths missed out on family conversations and spent little time on their own. These content-validated indicators apply to all children with DHH. Further work will evaluate the usefulness of these indicators in evaluating change in communication and social behaviors, and the implications of results for intervention. About 2–3 of every 1,000 children in the United States are born with decreased hearing level in the moderate to profound range in one or both ears and are considered deaf or hard of hearing (DHH) (Centers for Disease Control and Prevention, 2010). By school age, the prevalence increases to 6 of every 1,000 children due to late identification, late onset, and progressive hearing losses (Mehra, Eavey, & Keamy, 2009). Over 90% of children who are deaf are born to parents with hearing in the normal range (Mitchell, & Karchmer, 2004). The presence of hearing loss during infancy and early childhood may have substantial impact on a child’s social, emotional and language development. Information on how young children who are deaf and hard of hearing are functioning from the perspective of parents or caregivers is important for designing interventions to improve child and youth functioning at both the group and individual level. Caregivers, primarily parents, play a pivotal role in how children who are DHH function within their families, school, and environment. While outcomes for children who are DHH are often measured with audiological, speech or language measures, it is important to understand how the children are able to function in their natural environments. Caregivers, customarily parents, are central to the development of communication and other social skills among children who are DHH. Caregivers typically make decisions, often with guidance and input from professionals with typical hearing ability who specialize in working with DHH children (e.g., surgeons, teachers, audiologists, counselors). Information on how young children who are deaf and hard of hearing are functioning from the perspective of parents or caregivers is important for designing interventions to improve child and youth functioning at both the group and individual levels. Outcomes Assessment in Children Who are DHH Clinical outcome assessments (COAs) are outcomes resulting from performance tests (Performance-Task Outcomes or PerFOs), patient-reported outcomes (PROs), clinician-reported outcomes (ClinROs), or observer-reported outcomes (ObsROs) (Walton et al., 2015). PROs are reports coming directly from the patient (i.e., study participant) about a health or medical condition or its treatment without interpretation of the patient’s response by anyone else (United States Food and Drug Administration, 2009). Self-report of symptoms and feelings for youth under age 11 has had variable success in demonstrating acceptable properties of reliability and validity. A review of 53 health-related self-report measures for children lower than age 8 found that only 51% met minimal psychometric criteria (Cremeens, Eiser, & Blades, 2006). A recent task force report on self-report by young children recommended that observer-reported measures (ObsROs) from (parents or caregivers) be used with content assessing observable behaviors as much as possible rather than subjective aspects of the child’s experience (Matza, Swensen, Flood, Secnik, & Leidy, 2004). ObsROs are needed for young persons with DHH because often they are unable to broadly report direct effects or impacts of their medical condition or disability (Matza et al., 2013). Thus, caregivers are important informants for developing reliable and valid outcomes measures when self- report instruments do not meet the measurement standards for instruments in clinical trials or clinical practice. In particular caregivers can be important informants on communication and social functioning of their children. These reports may add to other observations from teachers, day care providers, or health providers. Existing questionnaires for assessing some aspects of hearing status among young persons completed by caregivers are available. Some of these instruments inquire about caregiver issues with their children rather than observations of their child and hearing-related behaviors or events. For example, the Paediatric Audiology Quality of Life parent-report questionnaire (Edwards, Hill, & Mahon, 2012), developed with caregivers of deaf children age 3–18 years old asks the parent to rate the degree of concern pertinent to communication and independence, emotional well-being, peer comparisons, and acceptance by peers. To develop this instrument, caregivers of 57 bilaterally implanted children to young adults aged 4–24 year documented their children’s implant usage at different time intervals. This ObsRO showed general improvement in the usage of cochlear implants over time. In another study, caregivers and teachers reported on the mental health of children age 6–16 years of age (Fellinger, Holzinger, & Pollard, 2012). Caregivers have also reported that the range of information available for use in making choices about treatment is limited (Ahlert & Greeff, 2012). Other measures are specific to early sign production observed by parents who are DHH (Anderson & Reilly, 2002) or teacher evaluations of student social communication skills (Antia, Jones, Luckner, Kreimeyer, & Reed, 2011). The instruments are valuable in specific populations and contexts for example young persons with cochlear implants (O’Neill, Lutman, Archbold, Gregory, & Nikolopoulos, 2004). Furthermore, most of these instruments were developed by experts, without significant parental/caregiver input or have been developed in other populations and tested in the DHH population. The paucity of caregiver-centered observation-based instruments developed specifically for documenting the social functioning and communication of children who are deaf or hard of hearing prompted exploration and development of the instruments reported here. For the remainder of this article, we shall use the term caregiver to include all primary caregivers of young children who are DHH. The qualitative study aims were (a) to elicit observable behaviors and events that caregivers of young children who are DHH considered to be associated with their children’s communication and social functioning, and (b) to develop instrument content and design of two observer-reported outcome instruments for use in children ages 5–7 and 8–10 years. Quantitative study aims were to assess the cross-sectional measurement properties of the CROBE-DHH for further exploration in group-level research and program evaluation. This paper reports the results of these studies and their implications for testing these measures in research and practice aimed at improving communication and social functioning in young children who cannot report for themselves or to augment self-reported measures. Study 1: Item Development We conducted a qualitative study for concept elicitation with caregivers of children ages 5–10 years who were identified as being deaf or hard of hearing with bilateral hearing loss with 3-tone frequency pure tone averages above 25 dB. The data collected through interviews were analyzed to create two observer-reported outcome measures (ObsROs), one for children with DHH ages 5–7 years and one for those 8–10 years. We chose these age groups based on prior work with child outcome measures by the authors (SeaQol group, University of Washington, 2017). In addition to concept elicitation interviews, cognitive interviews and review of item content by caregivers and experts were also conducted. We also conducted a quantitative study to assess the item characteristics and measurement properties of the new DHH ObsROs. Qualitative Sample We conducted 36 concept elicitation interviews and 12 individual cognitive interviews with caregivers who were hard of hearing or hearing. All participants in the qualitative study were recruited from the University of Washington. By design, the participants were divided into categories balanced with regard to child sex and age band (5–7 and 8–10 years). The draft instruments were then reviewed and critiqued by DHH specialists (n = 7) enlisted locally and nationally. The specialists included an otolaryngologist, audiologist, social worker, executives of a parent-based organization, and superintendents of schools for DHH youth. Three rounds of cognitive interviews were completed with parents of youth, including some parents who participated in item elicitation. After each round, the items were revised before the quantitative testing. Approval for this research was received from the Institutional Review Board of Seattle Children’s Hospital. Qualitative Sample Described Semi-structured individual qualitative interviews were conducted with n = 36 caregivers of DHH youth ages 5–10 years. Majority of caregivers were female (81%), white (61%), and caregivers of 5–7 years old DHH children (61%), with profound (50%) or moderate (33%) hearing loss. In half of the households caregivers were both hearing (50%) and primary language used at home was English (61%) (Table 1). Table 1. Sample characteristics—caregiver concept elicitation interviews (n = 36) DHH child age (years) n (%) 5–7 22 (61) 8–10 14 (39) Caregiver interviewee female, n (%) 32 (89) DHH child female, n (%) 22 (61) Child hearing level  Mild 2 (6)  Mod 12 (33)  Mod-severe/severe 3 (8)  Profound 19 (50) Child ethnicity (%)  White 22 (61)  Hispanic/Latino 6 (17)  African American/Black 1 (3)  Asian/Pacific Islander 1 (3)  Other 6 (17) Caregiver hearing status  Female deaf 8 (22)  Male deaf 10 (28)  Both hearing 18 (50) Primary language used at home  English 22 (61)  ASL 7 (19)  English-Like Sign 3 (8)  Spanish 3 (8)  Speech and gestures 1 (3) DHH child age (years) n (%) 5–7 22 (61) 8–10 14 (39) Caregiver interviewee female, n (%) 32 (89) DHH child female, n (%) 22 (61) Child hearing level  Mild 2 (6)  Mod 12 (33)  Mod-severe/severe 3 (8)  Profound 19 (50) Child ethnicity (%)  White 22 (61)  Hispanic/Latino 6 (17)  African American/Black 1 (3)  Asian/Pacific Islander 1 (3)  Other 6 (17) Caregiver hearing status  Female deaf 8 (22)  Male deaf 10 (28)  Both hearing 18 (50) Primary language used at home  English 22 (61)  ASL 7 (19)  English-Like Sign 3 (8)  Spanish 3 (8)  Speech and gestures 1 (3) Table 1. Sample characteristics—caregiver concept elicitation interviews (n = 36) DHH child age (years) n (%) 5–7 22 (61) 8–10 14 (39) Caregiver interviewee female, n (%) 32 (89) DHH child female, n (%) 22 (61) Child hearing level  Mild 2 (6)  Mod 12 (33)  Mod-severe/severe 3 (8)  Profound 19 (50) Child ethnicity (%)  White 22 (61)  Hispanic/Latino 6 (17)  African American/Black 1 (3)  Asian/Pacific Islander 1 (3)  Other 6 (17) Caregiver hearing status  Female deaf 8 (22)  Male deaf 10 (28)  Both hearing 18 (50) Primary language used at home  English 22 (61)  ASL 7 (19)  English-Like Sign 3 (8)  Spanish 3 (8)  Speech and gestures 1 (3) DHH child age (years) n (%) 5–7 22 (61) 8–10 14 (39) Caregiver interviewee female, n (%) 32 (89) DHH child female, n (%) 22 (61) Child hearing level  Mild 2 (6)  Mod 12 (33)  Mod-severe/severe 3 (8)  Profound 19 (50) Child ethnicity (%)  White 22 (61)  Hispanic/Latino 6 (17)  African American/Black 1 (3)  Asian/Pacific Islander 1 (3)  Other 6 (17) Caregiver hearing status  Female deaf 8 (22)  Male deaf 10 (28)  Both hearing 18 (50) Primary language used at home  English 22 (61)  ASL 7 (19)  English-Like Sign 3 (8)  Spanish 3 (8)  Speech and gestures 1 (3) Procedures The goal of the concept elicitation interviews with 36 caregivers was to elicit diverse views regarding child functioning and well-being issues rather than obtain a representative community sample. Caregivers were asked about areas of life and issues they thought were important for the well-being and optimal development of their child with DHH. The interviews were semi-structured to allow for the exploration of as many additional issues that arose during the interview as possible without constraining the interviewees to pre-conceived concepts. The interview guide was arranged to flow from the general to the specific. New themes were explored and added to the interview guide as needed (i.e., theoretical sampling) (Corbin, Strauss, & Strauss, 2008). Data saturation was considered achieved when interviewees no longer brought up new concepts, defined by three successive interviews with no new content or themes (Richards, Richards, & Morse, 2012). Interviews were conducted in English, Spanish, and American Sign Language with all questions harmonized for similar meaning in the three languages by culturally adapting the American English version. The research team, led by the senior author trained in translation and cultural adaptation, looked at all questions, the forward translations into Spanish and ASL, and the back translations of the questions, using principles of language translation and cultural adaptation developed and applied widely in health outcome assessment (International Society for Quality of Life Research, 2018). Qualitative Analysis and Development of Item Content We conducted a thematic analysis in which we looked for patterns in the caregiver interview data related to observations of DHH-related child functioning and well-being. Thematic analysis focused on documenting and examining patterns in the qualitative data (Balakrishnan, Edwards, & Perkins, 2012; Edwards et al., 2005; Edwards, Huebner, Connell, & Patrick, 2002; Guest, MacQueen, & Namey, 2012). We performed this analysis by coding in phases: (1) familiarization through reading the data, (2) generating and applying codes, (3) searching for themes among codes, (4) reviewing themes, and (5) defining and naming themes. The interview transcripts were checked for accuracy before being uploaded into the Atlas.ti qualitative analysis program. All identifiers were removed from transcripts before they were uploaded to Atlas.ti. Two members of the research team began by reading through the first transcripts as they were uploaded to Atlas.ti, and independently generated initial code lists. The codes that were generated related to interview text indicating caregivers’ observations of their children’s functioning related to DHH. Relevant interview text was that which was specific to DHH and was an observation (seen or heard) of a behavior or event related to child functioning. The investigators compared their code lists and reconciled their codes into one list. Codes that were similar in meaning were combined and a code list was created which was manageable in number (less than 15), with codes that had clear, operational definitions attached to them. Once the code list was developed, it was presented to the rest of the research team, and pairs of investigators continued to code the interview transcripts for DHH-related content. Pairs of coders compared their results periodically, and reconciled their independent applications of codes until there was 100% agreement. A commonly agreed upon set of crafted items was finalized for future testing of cross-sectional and longitudinal measurement properties. Draft items were judged by the research team and authors against the following criteria of item quality: the item (1) represents an area of importance to caregivers of children with DHH, (2) is in the spoken language of caregivers and able to be translated into other languages conceptually, (3) is potentially responsive to changes associated with treatment, (4) is likely to discriminate by hearing status, and (5) has a definite valence (i.e., either a clear positive or negative interpretation that is understood by all caregivers in a similar manner). The matrix of criteria were applied to each item and items chosen by investigator judgment to balance the goal of having caregiver-driven content across all treatment modalities, items that could detect change over time, and were clearly translatable according to principles of translation and cultural adaptation outlined earlier. Cognitive interviewing assessed the relevance, importance and comprehension of the content of measures (Fowler, 1993). Interviewees engaged in “think aloud” to describe how they interpreted an item and how they chose a response. This method identified any problematic language, format, or confusion in the respondent. We elicited options from caregivers in order to revise areas of comprehension difficulty and then tested these changes. Upon completing the instrument, each participant was given a short debriefing interview aimed at assessing how well they understood the questions and instructions in the instrument. Standard procedures developed at the U.S. National Center for Health Statistics Cognitive Survey Laboratory were used in the debriefing process (Willis, 1999). Results We generated a total of 772 items as a result of the thematic qualitative analysis of the caregiver interview transcripts. We reduced this to 88 items through elimination of redundancies and application of the item selection criteria described in Methods. The list of 88 items was further reduced to 35 by the study team in consultation with the specialists on the advisory board, and the final list arrived at through cognitive interviews with the parents in which confusing items were revised or eliminated. Thus both experts and parents were involved in final item selection. Draft items that were tested are contained in Table 2. The draft DHH ObsRO for children ages 5–7 years consisted of 20 total items: 6 items with a 7-day recall and 14 items with a 4-week recall. Recall period was chosen on how frequently caregivers might observe the particular behavior or event. The 7-day recall was used for items that were thought by parents to be observable in 1 week, and the others were thought to occur less frequently and thus were asked with a 4-week recall. For children ages 8–10 years, the draft instrument consisted of 24 total items: 7 items with a 7-day recall and 17 items with a 4-week recall. In sum, the recall periods were designed to be as short as possible while long enough to capture the behaviors and events of interest. We retained items for testing in which the children reported the event or behavior to caregivers, even when the caregiver was not present. Parents thought that reporting what children told them was important information that might be helpful in assessment. Table 2. Sample characteristics—measurement properties (n = 271) DHH child age (years) n (%) 5–7 126 (46) 8–10 145 (54) Caregiver respondent female, n (%) 250 (92) DHH child female 129 (48) Child ethnicity  White 192 (71)  Hispanic/Latino 44 (16)  African American/Black 5 (2)  Asian/Pacific Islander 12 (4)  Other 17 (6) Female caregiver’s highest education  Less than HS 12 (6)  HS/GED 19 (9)  Some College 63 (31)  College 111 (54) Child hearing level  Mild/unilateral 26 (10)  Moderate/Moderate 80 (30)  Severe/profound 56 (21)  CI 104 (39) Caregiver hearing status  Hearing 218 (95)  Deaf or HH 49 (05) Child school type  Mainstream without DHH program 122 (45)  Mainstream with DHH program 78 (29)  School for the deaf (day and residential) 65 (24)  Home school 6 (2) Caregiver-reported primary communication method by DHH child at home  Speech 177 (66)  Sign 54 (20)  Equal usage 38 (14) DHH child age (years) n (%) 5–7 126 (46) 8–10 145 (54) Caregiver respondent female, n (%) 250 (92) DHH child female 129 (48) Child ethnicity  White 192 (71)  Hispanic/Latino 44 (16)  African American/Black 5 (2)  Asian/Pacific Islander 12 (4)  Other 17 (6) Female caregiver’s highest education  Less than HS 12 (6)  HS/GED 19 (9)  Some College 63 (31)  College 111 (54) Child hearing level  Mild/unilateral 26 (10)  Moderate/Moderate 80 (30)  Severe/profound 56 (21)  CI 104 (39) Caregiver hearing status  Hearing 218 (95)  Deaf or HH 49 (05) Child school type  Mainstream without DHH program 122 (45)  Mainstream with DHH program 78 (29)  School for the deaf (day and residential) 65 (24)  Home school 6 (2) Caregiver-reported primary communication method by DHH child at home  Speech 177 (66)  Sign 54 (20)  Equal usage 38 (14) Note. Sample sizes may not sum to 271 due to missing values. Table 2. Sample characteristics—measurement properties (n = 271) DHH child age (years) n (%) 5–7 126 (46) 8–10 145 (54) Caregiver respondent female, n (%) 250 (92) DHH child female 129 (48) Child ethnicity  White 192 (71)  Hispanic/Latino 44 (16)  African American/Black 5 (2)  Asian/Pacific Islander 12 (4)  Other 17 (6) Female caregiver’s highest education  Less than HS 12 (6)  HS/GED 19 (9)  Some College 63 (31)  College 111 (54) Child hearing level  Mild/unilateral 26 (10)  Moderate/Moderate 80 (30)  Severe/profound 56 (21)  CI 104 (39) Caregiver hearing status  Hearing 218 (95)  Deaf or HH 49 (05) Child school type  Mainstream without DHH program 122 (45)  Mainstream with DHH program 78 (29)  School for the deaf (day and residential) 65 (24)  Home school 6 (2) Caregiver-reported primary communication method by DHH child at home  Speech 177 (66)  Sign 54 (20)  Equal usage 38 (14) DHH child age (years) n (%) 5–7 126 (46) 8–10 145 (54) Caregiver respondent female, n (%) 250 (92) DHH child female 129 (48) Child ethnicity  White 192 (71)  Hispanic/Latino 44 (16)  African American/Black 5 (2)  Asian/Pacific Islander 12 (4)  Other 17 (6) Female caregiver’s highest education  Less than HS 12 (6)  HS/GED 19 (9)  Some College 63 (31)  College 111 (54) Child hearing level  Mild/unilateral 26 (10)  Moderate/Moderate 80 (30)  Severe/profound 56 (21)  CI 104 (39) Caregiver hearing status  Hearing 218 (95)  Deaf or HH 49 (05) Child school type  Mainstream without DHH program 122 (45)  Mainstream with DHH program 78 (29)  School for the deaf (day and residential) 65 (24)  Home school 6 (2) Caregiver-reported primary communication method by DHH child at home  Speech 177 (66)  Sign 54 (20)  Equal usage 38 (14) Note. Sample sizes may not sum to 271 due to missing values. The Final CROBE-DHH Instruments The resulting instruments contain items considered potentially verifiable or observable by others for two age groups and showed sufficient measurement properties: 5–7 years (11 items) and 8–10 years (15 items). The draft and final items appear in Tables 3 and 4. The final items are listed in an Appendix to the article. The CROBE-DHH items use a 5-point Likert scale with adjectival anchors (Never, Rarely, Sometimes, Often, Very Often) on each of the five responses. The final instruments are available at www.seaqolgroup.org. Table 3. Descriptive and test-retest statistics for 7-day recall items by age group Communication 5–7 years (n = 126) 8–10 years (n = 145) mean (SD) ICC (n = 14) mean (SD) ICC (n = 23) Had a hard time communicating with family members because s/he is deaf or hard of hearing. N/A N/A 1.51 (1.25) .91 Missed out on things that were said during family conversations because s/he is deaf or hard of hearing. 2.01 (1.30) .94 2.04 (1.24) .88 Had to try several ways to communicate with people to help them understand her/him. 1.47 (1.25) .91 1.53 (1.30) .85 Social Started conversations with children her/his age. 3.04 (1.13) .95 3.01 (1.03) .70 Tell you (or another caregiver) what went on during his/her day. 2.98 (.99) .70 3.11 (.90) .89 Participated in family conversations at meal times in the home. 3.33 (.98) .79 3.41 (.80) .75 Spent time alone away from family activities because s/he is deaf or hard of hearing. .37 (.68) .95 .41 (.83) .58 Communication 5–7 years (n = 126) 8–10 years (n = 145) mean (SD) ICC (n = 14) mean (SD) ICC (n = 23) Had a hard time communicating with family members because s/he is deaf or hard of hearing. N/A N/A 1.51 (1.25) .91 Missed out on things that were said during family conversations because s/he is deaf or hard of hearing. 2.01 (1.30) .94 2.04 (1.24) .88 Had to try several ways to communicate with people to help them understand her/him. 1.47 (1.25) .91 1.53 (1.30) .85 Social Started conversations with children her/his age. 3.04 (1.13) .95 3.01 (1.03) .70 Tell you (or another caregiver) what went on during his/her day. 2.98 (.99) .70 3.11 (.90) .89 Participated in family conversations at meal times in the home. 3.33 (.98) .79 3.41 (.80) .75 Spent time alone away from family activities because s/he is deaf or hard of hearing. .37 (.68) .95 .41 (.83) .58 Note. Items reported on a 5-point response scale: 0 = never/1 = rarely/2 = sometimes/3 = often/4 = very often. Table 3. Descriptive and test-retest statistics for 7-day recall items by age group Communication 5–7 years (n = 126) 8–10 years (n = 145) mean (SD) ICC (n = 14) mean (SD) ICC (n = 23) Had a hard time communicating with family members because s/he is deaf or hard of hearing. N/A N/A 1.51 (1.25) .91 Missed out on things that were said during family conversations because s/he is deaf or hard of hearing. 2.01 (1.30) .94 2.04 (1.24) .88 Had to try several ways to communicate with people to help them understand her/him. 1.47 (1.25) .91 1.53 (1.30) .85 Social Started conversations with children her/his age. 3.04 (1.13) .95 3.01 (1.03) .70 Tell you (or another caregiver) what went on during his/her day. 2.98 (.99) .70 3.11 (.90) .89 Participated in family conversations at meal times in the home. 3.33 (.98) .79 3.41 (.80) .75 Spent time alone away from family activities because s/he is deaf or hard of hearing. .37 (.68) .95 .41 (.83) .58 Communication 5–7 years (n = 126) 8–10 years (n = 145) mean (SD) ICC (n = 14) mean (SD) ICC (n = 23) Had a hard time communicating with family members because s/he is deaf or hard of hearing. N/A N/A 1.51 (1.25) .91 Missed out on things that were said during family conversations because s/he is deaf or hard of hearing. 2.01 (1.30) .94 2.04 (1.24) .88 Had to try several ways to communicate with people to help them understand her/him. 1.47 (1.25) .91 1.53 (1.30) .85 Social Started conversations with children her/his age. 3.04 (1.13) .95 3.01 (1.03) .70 Tell you (or another caregiver) what went on during his/her day. 2.98 (.99) .70 3.11 (.90) .89 Participated in family conversations at meal times in the home. 3.33 (.98) .79 3.41 (.80) .75 Spent time alone away from family activities because s/he is deaf or hard of hearing. .37 (.68) .95 .41 (.83) .58 Note. Items reported on a 5-point response scale: 0 = never/1 = rarely/2 = sometimes/3 = often/4 = very often. Table 4. Descriptive and test-retest statistics for 4-week recall items by age group Communication 5–7 years (n = 126) 8–10 years (n = 145) mean (SD) ICC (n = 20) mean (SD) ICC (n = 19) Communicated comfortably with children outside the home. 3.23 (1.04) .69 3.15 (1.02) .62 Communicated for him/herself outside of home and school. N/A N/A 3.16 (1.11) .51 Gave up on something that s/he wanted to do because of problems communicating. .89 (1.21) .65 .96 (1.18) .67 Was left out of activities because s/he could not follow what was going on because s/he is deaf or hard of hearing. .84 (1.00) .46a 1.07 (1.15) .66 A lack of communication support limited child’s ability to participate in activities outside of school. .78 (1.11) .40a .87 (1.12) .65 Social Tell you (or another caregiver) that s/he is having a hard time because s/he is deaf or hard of hearing. .50 (.86) .38a 1.00 (1.16) .08a Spoke up for him/herself as someone who is deaf or hard of hearing. N/A N/A 1.75 (1.31) .22a Talked about his/her best friend. 2.78 (1.35) .48a 2.68 (1.36) .69 Participated in family conversations at large family gatherings. 2.85 (1.43) .62 2.82 (1.22) .30a Participated in activities outside of school with other children who are deaf or hard of hearing. 1.23 (1.39) .5a 1.30 (1.41) .38a Was bullied because s/he is deaf or hard of-hearing DHH. .17 (.49) .53 .45 (.95) .38a Was made fun of because is DHH. .23 (.54) .49a .54 (.96) .41a Spent time enjoying him/herself with children his/her age outside of school. 2.88 (1.16) .73 3.06 (1.03) .54 Got upset because s/he did not understand what others were saying. 1.43 (1.26) .43a 1.54 (1.24) .50a Caregiver had to take over communication for child outside of the home. N/A N/A 1.70 (1.36) .56 Communicated comfortably with siblings (ceiling effect). 3.84 (.61) .40a 3.72 (.84) .08a Communication 5–7 years (n = 126) 8–10 years (n = 145) mean (SD) ICC (n = 20) mean (SD) ICC (n = 19) Communicated comfortably with children outside the home. 3.23 (1.04) .69 3.15 (1.02) .62 Communicated for him/herself outside of home and school. N/A N/A 3.16 (1.11) .51 Gave up on something that s/he wanted to do because of problems communicating. .89 (1.21) .65 .96 (1.18) .67 Was left out of activities because s/he could not follow what was going on because s/he is deaf or hard of hearing. .84 (1.00) .46a 1.07 (1.15) .66 A lack of communication support limited child’s ability to participate in activities outside of school. .78 (1.11) .40a .87 (1.12) .65 Social Tell you (or another caregiver) that s/he is having a hard time because s/he is deaf or hard of hearing. .50 (.86) .38a 1.00 (1.16) .08a Spoke up for him/herself as someone who is deaf or hard of hearing. N/A N/A 1.75 (1.31) .22a Talked about his/her best friend. 2.78 (1.35) .48a 2.68 (1.36) .69 Participated in family conversations at large family gatherings. 2.85 (1.43) .62 2.82 (1.22) .30a Participated in activities outside of school with other children who are deaf or hard of hearing. 1.23 (1.39) .5a 1.30 (1.41) .38a Was bullied because s/he is deaf or hard of-hearing DHH. .17 (.49) .53 .45 (.95) .38a Was made fun of because is DHH. .23 (.54) .49a .54 (.96) .41a Spent time enjoying him/herself with children his/her age outside of school. 2.88 (1.16) .73 3.06 (1.03) .54 Got upset because s/he did not understand what others were saying. 1.43 (1.26) .43a 1.54 (1.24) .50a Caregiver had to take over communication for child outside of the home. N/A N/A 1.70 (1.36) .56 Communicated comfortably with siblings (ceiling effect). 3.84 (.61) .40a 3.72 (.84) .08a Note. Items on a 5-point response scale: 0 = never/1 = rarely/2 = sometimes/3 = often/4 = very often. N/A indicates items administered only to caregivers of children ages 8–10 years. Item “communicated comfortable with siblings” was dropped due to high response ceiling. aThis item was deleted from final instrument. Table 4. Descriptive and test-retest statistics for 4-week recall items by age group Communication 5–7 years (n = 126) 8–10 years (n = 145) mean (SD) ICC (n = 20) mean (SD) ICC (n = 19) Communicated comfortably with children outside the home. 3.23 (1.04) .69 3.15 (1.02) .62 Communicated for him/herself outside of home and school. N/A N/A 3.16 (1.11) .51 Gave up on something that s/he wanted to do because of problems communicating. .89 (1.21) .65 .96 (1.18) .67 Was left out of activities because s/he could not follow what was going on because s/he is deaf or hard of hearing. .84 (1.00) .46a 1.07 (1.15) .66 A lack of communication support limited child’s ability to participate in activities outside of school. .78 (1.11) .40a .87 (1.12) .65 Social Tell you (or another caregiver) that s/he is having a hard time because s/he is deaf or hard of hearing. .50 (.86) .38a 1.00 (1.16) .08a Spoke up for him/herself as someone who is deaf or hard of hearing. N/A N/A 1.75 (1.31) .22a Talked about his/her best friend. 2.78 (1.35) .48a 2.68 (1.36) .69 Participated in family conversations at large family gatherings. 2.85 (1.43) .62 2.82 (1.22) .30a Participated in activities outside of school with other children who are deaf or hard of hearing. 1.23 (1.39) .5a 1.30 (1.41) .38a Was bullied because s/he is deaf or hard of-hearing DHH. .17 (.49) .53 .45 (.95) .38a Was made fun of because is DHH. .23 (.54) .49a .54 (.96) .41a Spent time enjoying him/herself with children his/her age outside of school. 2.88 (1.16) .73 3.06 (1.03) .54 Got upset because s/he did not understand what others were saying. 1.43 (1.26) .43a 1.54 (1.24) .50a Caregiver had to take over communication for child outside of the home. N/A N/A 1.70 (1.36) .56 Communicated comfortably with siblings (ceiling effect). 3.84 (.61) .40a 3.72 (.84) .08a Communication 5–7 years (n = 126) 8–10 years (n = 145) mean (SD) ICC (n = 20) mean (SD) ICC (n = 19) Communicated comfortably with children outside the home. 3.23 (1.04) .69 3.15 (1.02) .62 Communicated for him/herself outside of home and school. N/A N/A 3.16 (1.11) .51 Gave up on something that s/he wanted to do because of problems communicating. .89 (1.21) .65 .96 (1.18) .67 Was left out of activities because s/he could not follow what was going on because s/he is deaf or hard of hearing. .84 (1.00) .46a 1.07 (1.15) .66 A lack of communication support limited child’s ability to participate in activities outside of school. .78 (1.11) .40a .87 (1.12) .65 Social Tell you (or another caregiver) that s/he is having a hard time because s/he is deaf or hard of hearing. .50 (.86) .38a 1.00 (1.16) .08a Spoke up for him/herself as someone who is deaf or hard of hearing. N/A N/A 1.75 (1.31) .22a Talked about his/her best friend. 2.78 (1.35) .48a 2.68 (1.36) .69 Participated in family conversations at large family gatherings. 2.85 (1.43) .62 2.82 (1.22) .30a Participated in activities outside of school with other children who are deaf or hard of hearing. 1.23 (1.39) .5a 1.30 (1.41) .38a Was bullied because s/he is deaf or hard of-hearing DHH. .17 (.49) .53 .45 (.95) .38a Was made fun of because is DHH. .23 (.54) .49a .54 (.96) .41a Spent time enjoying him/herself with children his/her age outside of school. 2.88 (1.16) .73 3.06 (1.03) .54 Got upset because s/he did not understand what others were saying. 1.43 (1.26) .43a 1.54 (1.24) .50a Caregiver had to take over communication for child outside of the home. N/A N/A 1.70 (1.36) .56 Communicated comfortably with siblings (ceiling effect). 3.84 (.61) .40a 3.72 (.84) .08a Note. Items on a 5-point response scale: 0 = never/1 = rarely/2 = sometimes/3 = often/4 = very often. N/A indicates items administered only to caregivers of children ages 8–10 years. Item “communicated comfortable with siblings” was dropped due to high response ceiling. aThis item was deleted from final instrument. Study 2: CROBE-DHH Measurement Properties We conducted a cross-sectional study to evaluate measurement properties of the newly developed instruments. Participants came from both the Seattle area and University of Colorado-Boulder with institutional review board approval from both sites. Study flyers and other advertisements were disseminated through schools, clinics, and advocacy groups. Recruitment was conducted by a specialist in hearing studies connected to the University of Washington. Caregivers were considered ineligible if they reported attention, vision or learning difficulties that would make them unable to complete the survey (N = 0); if they refused to complete the questionnaire after being screened (n = 36); or if they reported that their child had medical or mental health conditions that were of greater impact on their life than DHH, or had unilateral hearing impairment (n = 12). Of the 271 caregivers of DHH children who participated, we received complete audiology reports for 202 (75%) of the children, and an additional 47 (17%) incomplete audiograms were obtained from the child’s clinic or school. Hearing status was imputed by study researchers for remaining incomplete or missing audiogram data (n = 22), from information provided in caregiver telephone screener and study survey. Prior to analyzing the data, out-of-range and missing values were checked against the surveys completed by the participants and inconsistencies were corrected. After data cleaning, descriptive statistics were computed, including item means, standard deviations, percent of responses at the floor and ceiling, skewness, kurtosis and inter-item Pearson product-moment correlation coefficients. Test-Retest Reliability About 40 caregivers completed a 7-day test-retest on those items with a 7-day recall, and another 40 caregivers completed a 4-week test-retest for those items with the corresponding recall period. Measurement Structure We used standard item reduction methods for identifying items with a high level of missing data (>5%) and high ceiling or floor effects (>80% in bottom or top category). We applied principal components analysis using SPSS with Promax rotation to look at any identifiable linear combinations of items. Results Sample for Measurement Properties Study (N = 419) Caregivers were recruited to participate with 385 passing the study screen. Sixty-six (20%) eligible caregivers were categorized as lost-to-follow-up a final sample size of 271. About 120 (44%) caregivers completed the questionnaire by paper and pencil in English, 126 (46%) via web-based administration in English, 10 (4%) using an ASL DVD self-administered version, 5 (2%) via interviewer-administered ASL DVD version, and 10 (4%) completed the Spanish language version by paper and pencil. The sample characteristics can be found in Table 2. Study of Measurement Properties (n = 271) Caregiver reporters were primarily female (92%) and college educated (54%) of white (71%) children 8–10 years of age (54%), with cochlear implants (39%) or moderate to moderate-severe (30%) hearing loss in mainstream schools without DHH programs. Caregivers in Study 2 were from households in the Western region of the US (48%), where both caregivers were hearing (50%) and used English (61%) as the primary language in the home was spoken English. No differences were observed by mode of administration of the questionnaires. Measurement Structure Surveys administered to caregivers of both age groups at baseline and 7 days demonstrated good reliability over 7-day recall period (ICC ≥ .70) (Table 3). For items with 4-week recall period only items with fair reliability (ICC ≥ .50) in both age groups were retained (Table 4). For children 5–7 years and 8–10 years of age with DHH, no significant differences were seen in the 7-day recall mean item scores among the hearing level categories (Table 5). For children 8–10 years of age with DHH, significant differences were observed among hearing level categories in the 4-week recall item mean scores (Table 6). Participants with milder hearing impairment were reported to have less problem with communicating with family members or missing family conversations. The numbers in each hearing level category were small and did not permit pairwise multiple testing among hearing categories with straightforward interpretation. Differences were small in all items across hearing categories. Table 5. Descriptive statistics of 7-day recall items by hearing level for ages 5–7 years Communication Mild Moderate/moderate to severe Severe/profound Cochlear implant Sig levelb n = 13 n = 35 n = 25 n = 51 Hard time communicating with family members. N/A N/A N/A N/A Missed out on things that were said during family conversations because s/he is deaf or hard of hearing. 2.54 2.00 1.56 2.10 .229 (.97) (1.24) (1.47) (1.30) Had to try several ways to communicate with people to help them understand her/him. 1.54 1.26 1.71a 1.51 .876 (1.56) (1.04) (1.43) (1.22) Social Started conversations with children his/her age. 3.00 3.29 3.00 2.90 .167 (1.23) (.96) (1.19) (1.19) Tell you (or another caregiver) what went on during his/her day. 3.38 3.17 2.80 2.88 .294 (.77) (1.04) (1.08) (.91) Participated in family conversations at meal times in the home. 3.77 3.51 3.12 3.18 .501 (.44) (.82) (1.17) (1.05) Spent time alone away from family activities because s/he is deaf or hard of hearing. .77 .17 .36 .41 .298 (1.09) (1.09) (.70) (.64) Communication Mild Moderate/moderate to severe Severe/profound Cochlear implant Sig levelb n = 13 n = 35 n = 25 n = 51 Hard time communicating with family members. N/A N/A N/A N/A Missed out on things that were said during family conversations because s/he is deaf or hard of hearing. 2.54 2.00 1.56 2.10 .229 (.97) (1.24) (1.47) (1.30) Had to try several ways to communicate with people to help them understand her/him. 1.54 1.26 1.71a 1.51 .876 (1.56) (1.04) (1.43) (1.22) Social Started conversations with children his/her age. 3.00 3.29 3.00 2.90 .167 (1.23) (.96) (1.19) (1.19) Tell you (or another caregiver) what went on during his/her day. 3.38 3.17 2.80 2.88 .294 (.77) (1.04) (1.08) (.91) Participated in family conversations at meal times in the home. 3.77 3.51 3.12 3.18 .501 (.44) (.82) (1.17) (1.05) Spent time alone away from family activities because s/he is deaf or hard of hearing. .77 .17 .36 .41 .298 (1.09) (1.09) (.70) (.64) aSample size was equal to 24 not 25. bOne-way analysis of variance. Table 5. Descriptive statistics of 7-day recall items by hearing level for ages 5–7 years Communication Mild Moderate/moderate to severe Severe/profound Cochlear implant Sig levelb n = 13 n = 35 n = 25 n = 51 Hard time communicating with family members. N/A N/A N/A N/A Missed out on things that were said during family conversations because s/he is deaf or hard of hearing. 2.54 2.00 1.56 2.10 .229 (.97) (1.24) (1.47) (1.30) Had to try several ways to communicate with people to help them understand her/him. 1.54 1.26 1.71a 1.51 .876 (1.56) (1.04) (1.43) (1.22) Social Started conversations with children his/her age. 3.00 3.29 3.00 2.90 .167 (1.23) (.96) (1.19) (1.19) Tell you (or another caregiver) what went on during his/her day. 3.38 3.17 2.80 2.88 .294 (.77) (1.04) (1.08) (.91) Participated in family conversations at meal times in the home. 3.77 3.51 3.12 3.18 .501 (.44) (.82) (1.17) (1.05) Spent time alone away from family activities because s/he is deaf or hard of hearing. .77 .17 .36 .41 .298 (1.09) (1.09) (.70) (.64) Communication Mild Moderate/moderate to severe Severe/profound Cochlear implant Sig levelb n = 13 n = 35 n = 25 n = 51 Hard time communicating with family members. N/A N/A N/A N/A Missed out on things that were said during family conversations because s/he is deaf or hard of hearing. 2.54 2.00 1.56 2.10 .229 (.97) (1.24) (1.47) (1.30) Had to try several ways to communicate with people to help them understand her/him. 1.54 1.26 1.71a 1.51 .876 (1.56) (1.04) (1.43) (1.22) Social Started conversations with children his/her age. 3.00 3.29 3.00 2.90 .167 (1.23) (.96) (1.19) (1.19) Tell you (or another caregiver) what went on during his/her day. 3.38 3.17 2.80 2.88 .294 (.77) (1.04) (1.08) (.91) Participated in family conversations at meal times in the home. 3.77 3.51 3.12 3.18 .501 (.44) (.82) (1.17) (1.05) Spent time alone away from family activities because s/he is deaf or hard of hearing. .77 .17 .36 .41 .298 (1.09) (1.09) (.70) (.64) aSample size was equal to 24 not 25. bOne-way analysis of variance. Table 6. Descriptive statistics of 7-day recall items by hearing level for ages 8–10 years Communication Mild Moderate/moderate to severe Severe/profound Cochlear implant Sig levela n = 13 n = 45 n = 31 n = 53 Had a hard time communicating with family members because s/he is deaf or hard of hearing. 1.85 1.75 1.45 1.47 .007 (.99) (1.33) (1.14) (1.23) Missed out on things that were said during family conversations because s/he is deaf or hard of hearing. 2.23 2.18 1.29 2.04 .003 (.83) (1.30) (1.35) (1.25) Had to try several ways to communicate with people to help them understand her/him. 1.23 1.60 1.77 1.51 .125 (1.42) (1.21) (1.09) (1.28) Social Started conversations with children his/her age. 3.00 2.84 3.29 2.96 .769 (1.08) (1.09) (.82) (1.09) Tell you what went on during his/her day. 3.15 2.98 3.23 3.17 .904 (.99) (.96) (.84) (.87) Participated in family conversations at meal times in the home. 3.77 3.24 3.55 3.36 .476 (.44) (.93) (.68) (.79) Spent time alone away from family activities because s/he is deaf or hard of hearing. .08 .67 .32 .36 .053 (.28) (1.09) (.70) (.71) Communication Mild Moderate/moderate to severe Severe/profound Cochlear implant Sig levela n = 13 n = 45 n = 31 n = 53 Had a hard time communicating with family members because s/he is deaf or hard of hearing. 1.85 1.75 1.45 1.47 .007 (.99) (1.33) (1.14) (1.23) Missed out on things that were said during family conversations because s/he is deaf or hard of hearing. 2.23 2.18 1.29 2.04 .003 (.83) (1.30) (1.35) (1.25) Had to try several ways to communicate with people to help them understand her/him. 1.23 1.60 1.77 1.51 .125 (1.42) (1.21) (1.09) (1.28) Social Started conversations with children his/her age. 3.00 2.84 3.29 2.96 .769 (1.08) (1.09) (.82) (1.09) Tell you what went on during his/her day. 3.15 2.98 3.23 3.17 .904 (.99) (.96) (.84) (.87) Participated in family conversations at meal times in the home. 3.77 3.24 3.55 3.36 .476 (.44) (.93) (.68) (.79) Spent time alone away from family activities because s/he is deaf or hard of hearing. .08 .67 .32 .36 .053 (.28) (1.09) (.70) (.71) aUsing one-way analysis of variance. Table 6. Descriptive statistics of 7-day recall items by hearing level for ages 8–10 years Communication Mild Moderate/moderate to severe Severe/profound Cochlear implant Sig levela n = 13 n = 45 n = 31 n = 53 Had a hard time communicating with family members because s/he is deaf or hard of hearing. 1.85 1.75 1.45 1.47 .007 (.99) (1.33) (1.14) (1.23) Missed out on things that were said during family conversations because s/he is deaf or hard of hearing. 2.23 2.18 1.29 2.04 .003 (.83) (1.30) (1.35) (1.25) Had to try several ways to communicate with people to help them understand her/him. 1.23 1.60 1.77 1.51 .125 (1.42) (1.21) (1.09) (1.28) Social Started conversations with children his/her age. 3.00 2.84 3.29 2.96 .769 (1.08) (1.09) (.82) (1.09) Tell you what went on during his/her day. 3.15 2.98 3.23 3.17 .904 (.99) (.96) (.84) (.87) Participated in family conversations at meal times in the home. 3.77 3.24 3.55 3.36 .476 (.44) (.93) (.68) (.79) Spent time alone away from family activities because s/he is deaf or hard of hearing. .08 .67 .32 .36 .053 (.28) (1.09) (.70) (.71) Communication Mild Moderate/moderate to severe Severe/profound Cochlear implant Sig levela n = 13 n = 45 n = 31 n = 53 Had a hard time communicating with family members because s/he is deaf or hard of hearing. 1.85 1.75 1.45 1.47 .007 (.99) (1.33) (1.14) (1.23) Missed out on things that were said during family conversations because s/he is deaf or hard of hearing. 2.23 2.18 1.29 2.04 .003 (.83) (1.30) (1.35) (1.25) Had to try several ways to communicate with people to help them understand her/him. 1.23 1.60 1.77 1.51 .125 (1.42) (1.21) (1.09) (1.28) Social Started conversations with children his/her age. 3.00 2.84 3.29 2.96 .769 (1.08) (1.09) (.82) (1.09) Tell you what went on during his/her day. 3.15 2.98 3.23 3.17 .904 (.99) (.96) (.84) (.87) Participated in family conversations at meal times in the home. 3.77 3.24 3.55 3.36 .476 (.44) (.93) (.68) (.79) Spent time alone away from family activities because s/he is deaf or hard of hearing. .08 .67 .32 .36 .053 (.28) (1.09) (.70) (.71) aUsing one-way analysis of variance. The principal components analyses did not reveal any clear item structure for either age-related module. The average eigen value for the PROMAX rotation for the parent observations of 5–7 years old children was .48 with a range from −.275 to 5.13. The average eigen value for parent observations of the 8–10 years old children was .62 with a range from −.23 to 7.4. Discussion This manuscript reports on the first guideline-driven caregiver-reported observational indicators (ObsROs) for children aged 5–10 who are deaf or hard of hearing (DHH) as reported by parents and across treatment modalities. They include modules reported by caregivers of younger children age 5–7 and older children age 8–10. We found that caregivers were able to easily report on behaviors they could directly observe in relation to their children’s life. The items reflect what caregivers and clinicians considered important to the quality of life of children with hearing impairment, notably and not surprisingly communication, particularly within the family context, and social interaction. We intentionally did not include caregiver assessment of children’s inner feelings which are known only to the children themselves. It is likely, however, that some of the observable items may well correspond to children’s subjective feelings, such as those that address what concerns children report to their parents. Caregivers selected domains in the first study that reflected inclusion of youth with DHH in family life as well as inclusion outside the home and in activities that reflect independence appropriate to their age. Caregivers did not report often that their children were left out of activities because of DHH. For both age groups, however, caregivers reported more frequent difficulty amongst these youth in missing out on family conversations. Specific techniques for increasing inclusion in family conversations may be suggested by this finding. In the social realm, few youth who are DHH spend time alone away from the family. Building independence through providing opportunities for time away from family may be an important strategy for interventions at a group and individual level. The field-testing of the two modules yielded valuable results in terms of providing sufficient evidence for carrying a set of items forward for caregiver reports concerning children in both age ranges. Test-retest results indicated good reproducibility for all items with 7-day recall. Four of the items in each age range had ICC’s near or above .90 suggesting they might be used in clinical practice where high reproducibility is necessary. These items addressed family conversations and having a hard time or missing out on things said during these conversations. These results confirm those in older children where higher youth perception of their ability to understand parents’ communication was significantly correlated with perceived quality of life as well as lower reported depressive symptoms and lower perceived stigma (Kushalnagar et al., 2011). The items with 7-day recall were also easily observable because of the close interaction in the home rather than events observed outside the home. Poor test-retest results for multiple items with 4-week recall may well be due to the lack of opportunity of caregivers to observe these events, regardless of the period of time for the observations. For example, parents may not have the opportunity to observe their child being made fun of because of being DHH. Interestingly, reproducibility was higher, though not very high, for reporting that the child 5–7 was bullied because of being DHH, possibly because of heightened caregiver sensitivity to watching for this event. Test-retest was also not high for many items dependent on the child telling the parent what was going on in their life. Some children, regardless of hearing status, do not discuss life events with their parents. Because parents considered these items important for assessing their children, we retained those items requiring children reports to their caregivers that showed sufficient measurement properties and had promise such as talking about their best friend for children 8–10. It is not surprising that we did not find a clear measurement structure with domains for either DHH module in children. Observation-based reports of behaviors or events that may not hang together in any conceptual structure, similar to those found for attitudinal or perceptual measures not related to discrete events or behaviors. Although we have grouped the items as communication and social, all items are social. The use of these items individually in a profile is likely the best approach unless further testing with a larger sample by hearing status and possibly other communication variables such as mode of communication and parent hearing status. Individual items are easily interpretable and can be used to identify areas where parents observe their children having difficulties in communication and social interaction. These ObsROs for children with DHH are part of a larger project to create age-appropriate, disease-specific reported outcomes across the life span. To date we have developed and validated a self-report instrument for adolescents age 11 and above (Patrick et al., 2011). Future work with CROBE-DHH would include use of the items in an intervention or longitudinal study to evaluate change over time and interpretation of that change. A limitation of this study is the purposive nature of the sample, though drawn from more than one geographical site in Study 2. Approaching a broader spectrum of caregivers across multiple sites would be advisable. To successfully implement these instruments in future studies may require a more formal observational training protocol for parents on how to systematically observe and report behaviors and events. Finally one of the most important aspects of observer measures is inter-observer reliability (Yoder & Symons, 2010). We would also hope to conduct an inter-rater reliability assessment on the items in future research. We did not have sufficient numbers to investigate parent hearing status in relation to family communication, but this is an important are for future investigations using these instruments. Also as found in other studies with adolescents, technology type and school setting were associated with self-reported quality of life specific to DHH (Meyer et al., 2013; Schick et al., 2013). These may also apply to observational measures in children in different school settings. Conclusion We have developed two caregiver-reported observational instruments that may prove useful in evaluating the status of younger children who are deaf or hard of hearing. These instruments potentially fill an important unmet need in providing ways to evaluate the effectiveness of treatment, including surgical, behavioral, and environmental on the quality of life of children with DHH. Increased attention to younger children is an important goal in research and practice, as early interventions may provide a higher quality of life for children with hearing difficulties as they enter adolescence and adulthood. Funding This research was funded by a grant to D.L.P., PhD, MSPH (PI) from the National Institute on Deafness and Other Communication Disorders (R01 DC008144). We wish to acknowledge the special contributions of our co-investigator, the late John Niparko, MD and other expert advisors primarily from the Seattle area who freely shared their views on children and youth who are deaf or hard of hearing and commented on Caregiver Report of Behaviors and Events - Deaf or Hard of Hearing (CROBE-DHH) items. Acknowledgements We thank James Kelley for help in preparing the manuscript. The CROBE-DHH is available for use by researchers, educators, and others in paper and pencil form (www.seaqolgroup.org). References Ahlert , I. A. , & Greeff , A. P. ( 2012 ). Resilience factors associated with adaptation in families with deaf and hard of hearing children . Am Ann Deaf , 157 , 391 – 404 . https://doi.org/10.1353/aad.2012.1629 Google Scholar CrossRef Search ADS PubMed Anderson , D. , & Reilly , J. 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Clinical outcome assessments: Conceptual foundation-report of the ISPOR clinical outcomes assessment—Emerging good practices for outcomes research task force . Value Health , 18 , 741 – 752 . doi:10.1016/j.jval.2015.08.006 Google Scholar CrossRef Search ADS PubMed Willis , G. B. ( 1999 ). Cognitive interviewing: A “how to” guide, from the short course “Reducing Survey Error through Research on the Cognitive and Decision Processes in Surveys”. Paper presented at the meeting of the American Statistical Association. Yoder , P. , & Symons , F. ( 2010 ). Observational measurement of behavior . New York, NY : Springer . Appendix Youth Deafness and Hard-of-Hearing Behaviors and Events (CROBE-DHH) Parents/caregivers of children ages 5–7 During thepast 7 daysconcerning your child who is deaf or hard of hearing: How often did you observe or learn that your child missed out on things that were said during family conversations because s/he is deaf or hard of hearing? During thepast 7 daysconcerning your child who is deaf or hard of hearing: How often did you observe or learn that your child had to try several ways to communicate with people to help them understand her/him? During thepast 7 daysconcerning your child who is deaf or hard of hearing: How often did you observe or learn that your child started conversations with children his/her age? During thepast 7 daysconcerning your child who is deaf or hard of hearing: How often did your child tell you (or another parent/caregiver) what went on during his/her day? During thepast 7 daysconcerning your child who is deaf or hard of hearing: How often did you observe or learn that your child participated in family conversations at meal times in the home? During thepast 7 daysconcerning your child who is deaf or hard of hearing: How often did you observe or learn that your child spent time alone away from family activities because s/he is deaf or hard of hearing? During thepast 4 weeksconcerning your child who is deaf or hard of hearing: How often did you observe or learn that your child communicated comfortably with children outside the home? During thepast 4 weeksconcerning your child who is deaf or hard of hearing: How often did you observe or learn that your child gave up on something that s/he wanted to do because of problems communicating? During thepast 4 weeksconcerning your child who is deaf or hard of hearing: How often did you observe or learn that your child participated in family conversations at large family gatherings? During thepast 4 weeksconcerning your child who is deaf or hard of hearing: How often did you observe or learn that your child was bullied because s/he is deaf or hard of hearing? During thepast 4 weeksconcerning your child who is deaf or hard of hearing: How often did you observe or learn that your child spent time enjoying him/herself with children his/her age outside of school? Items use the following response scale: 0 = Never, 1 = Rarely (Once during week), 2 = Sometimes (2-3 times), 3 = Often (Daily), 4 = Very Often (More than once a day). Youth Deafness and Hard-of-Hearing Behaviors and Events (CROBE-DHH) Parents/caregivers of children ages 8–10 During thepast 7 daysconcerning your child who is deaf or hard of hearing: How often did you observe or learn that your child had a hard time communicating with family members because s/he is deaf or hard of hearing? During thepast 7 daysconcerning your child who is deaf or hard of hearing: How often did you observe or learn that your child missed out on things that were said during family conversations because s/he is deaf or hard of hearing? During thepast 7 daysconcerning your child who is deaf or hard of hearing: How often did you observe or learn that your child had to try several ways to communicate with people to help them understand her/him? During thepast 7 daysconcerning your child who is deaf or hard of hearing: How often did you observe or learn that your child started conversations with children his/her age? During thepast 7 daysconcerning your child who is deaf or hard of hearing: How often did your child tell you (or another parent/caregiver) what went on during his/her day? During thepast 7 daysconcerning your child who is deaf or hard of hearing: How often did you observe or learn that your child participated in family conversations at meal times in the home? During thepast 7 daysconcerning your child who is deaf or hard of hearing: How often did you observe or learn that your child spent time alone away from family activities because s/he is deaf or hard of hearing? During thepast 4 weeksconcerning your child who is deaf or hard of hearing: How often did you observe or learn that your child communicated comfortably with children outside the home? During thepast 4 weeksconcerning your child who is deaf or hard of hearing: How often did you observe or learn that your child communicated for him/herself outside of the home and school? During thepast 4 weeksconcerning your child who is deaf or hard of hearing: How often did you observe or learn that your child gave up on something that s/he wanted to do because of problems communicating? During thepast 4 weeksconcerning your child who is deaf or hard of hearing: How often did you observe or learn that your child was left out of activities because s/he could not follow what was going on because s/he is deaf or hard of hearing? During thepast 4 weeksconcerning your child who is deaf or hard of hearing: How often did you observe or learn that a lack of communication support limited your child’s ability to participate in activities outside of school? During thepast 4 weeksconcerning your child who is deaf or hard of hearing: How often did you observe or learn that your child talked about his/her best friend? During thepast 4 weeksconcerning your child who is deaf or hard of hearing: How often did you observe or learn that your child spent time enjoying him/herself with children his/her age outside of school? During thepast 4 weeksconcerning your child who is deaf or hard of hearing: How often did you (or another parent/caregiver) have to take over communication for your child outside of the home? Items use the following response scale: 0 = Never, 1 = Rarely (Once during week), 2 = Sometimes (2-3 times), 3 = Often (Daily), 4 = Very Often (More than once a day). NOTE: The CROBE-DHH must not be reproduced or utilized in any manner without prior approval of the Seattle Quality of Life Group and the authors. Requests for permission to utilize the CROBE-DHH should be the following: Seattle Quality of Life Group Attn: Instrument Coordinator Box 359455, University of Washington Seattle, WA 98195-9455 seaqol@uw.edu www.seaqolgroup.org © The Author(s) 2018. Published by Oxford University Press. All rights reserved. For Permissions, please email: journals.permissions@oup.com. This article is published and distributed under the terms of the Oxford University Press, Standard Journals Publication Model (https://academic.oup.com/journals/pages/about_us/legal/notices)

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The Journal of Deaf Studies and Deaf EducationOxford University Press

Published: Apr 4, 2018

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