Parental Perspectives on Communication from Health Care Providers following a Newborn Diagnosis of Congenital Cytomegalovirus Infection: A Secondary Analysis of a Qualitative Study
Abstract
:1. Introduction
2. Materials and Methods
3. Results
3.1. Content
3.2. The Initial Diagnosis
3.3. The Likely Health Outcomes
3.4. Comfort and Coping
3.5. Symptom Watch
3.6. Resources
3.7. Source and Channels
3.8. Prevention
4. Discussion
4.1. Communication of Clinical Information from Providers
4.2. Social and Emotional Supports for Parents
4.3. Limitations
5. Conclusions
Author Contributions
Funding
Institutional Review Board Statement
Informed Consent Statement
Data Availability Statement
Acknowledgments
Conflicts of Interest
Appendix A. CMV Parent In-Depth Interview Guides
Group 1—Parents of children born with CMV who were symptomatic at birth and may or may not have developed sequelae later on |
Group 2—Parents of children born with CMV who were asymptomatic and later on developed sequelae |
[variations indicated within brackets] |
Consent |
Good afternoon, my name is _____________. I want to thank you in advance for taking time from your busy schedule to participate in this interview. This research is being sponsored by the Centers for Disease Control and Prevention. The information you provide today will be extremely useful to other parents and to professionals working on CMV. When one of the CMV staff members called and asked you to participate today you were told that this interview is entirely voluntary, that no LAST names will be used today or in our reporting of the data, and that if there are any questions you do not want to answer or feel are too sensitive you are free to not reply. In fact, you are free to leave the interview session at any time. We will be recording today’s session for our note-taking purposes, so please let me know if you prefer we not record the interview. The last important thing to know is that we are aware of your experience with CMV testing, but we do not have access to any of your child’s medical records. If you could signify by saying your FIRST NAME ONLY and YES you understand how your privacy is being protected we can proceed. I’ll stop for a minute to see if you have any questions. |
Purpose |
As I said my name is _________ and I am working with Dr. Gail Demmler-Harrison and her CMV team on a project to help us better understand the kinds of positive and negative mental, emotional, financial, and family issues that parents experience when their child is [with health problems and then diagnosed with congenital CMV/ first tested for congenital CMV and in the following critical years of development as follow-up tests may be completed]. One of the best ways for us to do that is to talk directly to people like you who know a lot about those experiences. I will be asking you to share your thoughts, feelings, and opinions about these experiences. Please remember that there are no right or wrong answers—we just want to know about your own thoughts, whatever they may be. From time to time I may move the discussion so we can cover all of our topics tonight. Let me stop and ask if there are any questions so far. |
Procedures |
|
Warm Up and Opening Question (5 min) |
1. First, I wonder if you could tell about some of your happiest memories from the first 5 years of life of your child who was born infected with CMV. |
[2. How did you know that your child had health problems?—Group 1 only] |
[3. How did their diagnosis with congenital CMV occur? Did it happen right away or did it take time before you received a diagnosis?—Group 1 only] |
Negative Psychosocial Impacts of CMV Test and Follow-up Testing (Note: moderator will rotate the positive and negative impacts sections among the interview sessions to minimize any order bias]. |
4. As you know raising a child can have its ups and downs. But we are particularly interested in your memory of experiences you had when your child was first diagnosed positive for congenital CMV. So take a minute and think back now to that time, when your child was an infant and you received this testing news. Tell me a about your first reactions? |
5. After the positive CMV test results were given to you, what would you say were the first few things you wanted to know? Was anyone able to answer those questions for you? |
6. In those first few days tell me how you felt about yourself in regards to the positive test? [Probe for feeling alone, feeling responsible, being scared, feeling overwhelmed, no major concerns, not a problem]. |
7. In the first few days that followed the positive CMV test results, tell me about any kinds of family or marital stress you experienced. [Moderator to probe for spousal issues like blaming, concerns about how my other children and how they would cope, worries about what my family would think/react]. |
[8. Can you tell me what you thought about in terms of financial issues related to the positive test results? Did you worry about anything, what kinds of things? [Probe for concerns about enough money to have necessary follow-up tests done, concerns about health insurance coverage, worries about how I can care for this child and my other children].—Group 2 only] |
a. What other kinds of things concerned you at that time—say in the first 2–3 months of life? |
9. Now let’s talk a little about the years following the initial test results. You participated in the follow-up clinic for some period of time. After the first few months, what kinds of new concerns or stressful issues surfaced? [Probe for stressors specific to self, marriage/spouse, and parenting skills/efficacy]. |
10. After the first few months, what kinds of new concerns or stressful issues surfaced related to your family, friends, and other social networks (e.g., church)? |
[a. Did any new financial or work-related concerns surface in the first few years of follow up? [Probe for health insurance costs, job loss, work conflicts].—Group 2 only] |
11. Now thinking about the medical professionals you met with over those first few years, were there any additional stressors from those meetings? What kinds of things frustrated you? What could have been explained better? Thinking about new parents today, how would you explain some of the things that frustrated you? |
[12. Thinking about those extra doctor visits and follow-up tests that your child went through, what kinds of stress or negative impacts did those activities or tests have on you and your family? [Probe for transportation hassles of getting to appointments, concerns about time off of work to get to appointments, costs of travel, difficulty with child care for other children].—Group 2 only] |
13. Now let’s talk about your interactions with your child. Thinking back over those first few years, how would you characterize your relationship with your child? [Probe for stressors related to child behaviors, lack of affection, over-protectiveness]. |
14. If you have other children, did you feel that your relationship with CMV+ child was different in some ways due to the CMV? How so? |
a. Did it seem as though your child was about the same or more difficult to parent than other children you knew then? In what ways? |
[b. I understand that your child was generally healthy at birth. At what age was your child diagnosed with hearing loss associated with congenital CMV? How did the diagnosis occur? What was your reaction? Has your child experienced any other health problems associated with congenital CMV?—Group 2 only] |
[c. Did knowing that your child had congenital CMV make it easier or harder to deal with the diagnosis of the hearing loss or other health problems? In what ways?—Group 2 only] |
15. As your child got older, what kinds of concerns did they have about getting the doctor visits and follow-up tests done? What could have been done or said to you to improve that experience for you and for your child? |
Positive Psychosocial Impacts |
(Note: moderator will rotate the positive and negative impacts sections among the interview sessions to minimize any order bias. Now let’s switch gears and talk about some of the positive aspects of having the CMV test done and the knowledge that came with that. |
[16. In what ways was it helpful to know that your child’s health problems were caused by congenital CMV?—Group 1 only] |
[17. Thinking back to initial diagnosis of congenital CMV infection in your newborn, what would you say was the most positive aspect of getting those results?—Group 2 only] |
[18. Now thinking about the following few years and the follow up tests that you and your child went through, what would you say are the best things about having those follow-up tests done? [Probe for the kinds of concerns that the follow-up testing minimized].—Group 2 only] |
[19. All in all, tell me about your thinking on the value of CMV testing and follow-up tests. Were the tests worth the troubles, stress, and issues they caused for you as a parent? Do you wish your child had never been tested? Why or why not?—Group 2 only] |
[a. What about how worthwhile it was for your child?—Group 2 only] |
Communication about CMV Testing |
20. Thinking back to the initial diagnosis of congenital CMV in your child, what kind of information or help would have been most useful to you then? Who would be the best person or source to give new parents that information? |
21. And then later as your child entered the follow up visits and testing, what kind of information or help would have been most useful to you then? Who would be the best person or source to give new parents that information? |
22. Based on your experience, do you think newborn CMV testing should be offered to all new parents? If you think so, what concerns would you have about that? Also, should the testing be mandatory or should it require parental permission? Why or why not? |
23. What are the three most important things you would want to say to other parents about having a positive CMV test result? |
a. Does what you need to tell parents differ as the child gets older? How so? |
b. Where do you tell them to get more information if they need it? |
c. Are there good Internet resources you would send them to? Which ones? |
24. Who do you think does a better job helping with the information needs of parents of newly diagnosed children, other parents, doctors, nurses, others? What is that they do better? |
Closing Thoughts |
25. Before we finish up today, I’d like to ask if there are any other topics or issues, positive or negative, that you would like to mention? |
Thank you so much. Your thoughts and insights today have been very helpful to this project. We will be interviewing some other parents as well. After that we will be conducting a mail survey to collect more detailed information from you. If you do not want to be contacted about that survey, please let one of the CMV staff people know that. One of them will also make sure you have parking tokens and are signed up to receive the $25 incentive as a token of appreciation for your interest. Thank you again and drive safely going home. |
Appendix B. Parent Focus Group Guide
Group 3—Parents of children born with CMV who were asymptomatic and did not develop sequelae |
Consent |
Good afternoon, my name is _____________. I want to thank you in advance for taking time from your busy schedule to participate in this focus group. This research is being sponsored by the Centers for Disease Control and Prevention. The information you provide today will be extremely useful to other parents and to professionals working on congenital CMV. When one of the CMV staff members called and asked you to participate today you were told that this focus group is entirely voluntary, that no LAST names will be used today or in our reporting of the data, and that if there are any questions you do not want to answer or feel are too sensitive you are free to not reply or to write down your comments and hand them to me after the session if you’d prefer. In fact, you are free to leave the focus group session at any time. We will be recording today’s session, so please try to speak one at a time. If each of you could signify by saying your FIRST NAME ONLY and YES you understand how your privacy is being protected we can proceed. [The moderator will go around the table and ask each participant to state their agreement with the informed consent]. I’ll stop for a minute to see if there are any questions- anyone? |
Purpose |
As I said my name is _________ and I am working with Dr. Gail Demmler-Harrison and her CMV team on a project to help us better understand the kinds of positive and negative mental, emotional, financial, and family issues that parents experience when their child is first tested for congenital CMV and in the following critical years of development as follow-up tests may be completed. One of the best ways for us to do that is to talk directly to people like you who know a lot about those experiences. I will be asking you to share your thoughts, feelings, and opinions about these experiences. Please remember that there are no right or wrong answers—we just want to know about your own thoughts, whatever they may be. I want to encourage you all to participate in an open discussion. From time to time I may move the discussion so we can cover all of our topics tonight. Let me stop and ask if there are any questions so far. |
The last important thing to know is that each of you in this group share the experience of having a child test positive for congenital CMV. [Moderator to note this group is Parents whose child was asymptomatic, C-CMV positive, but did not develop sequelae] |
Procedures |
|
Warm Up and Opening Question (5 min) |
1. First, I’d like to go around the table and have each of you tell me your FIRST name only and one of your memories from the first 5 years of life of your child who was born infected with CMV. [Moderator will encourage any kind of memory sharing they prefer]. |
Negative Psychosocial Impacts of CMV Test and Follow-up Testing |
(Note: moderator will rotate the positive and negative impacts sections among the focus group sessions to minimize any order bias]. |
2. As you all know raising a child can have its ups and downs. But we are particularly interested in your memory of experiences you had when your child was first diagnosed positive for congenital CMV. So take a minute and think back now to that time, when your child was an infant and you received this testing news. Tell me about your first reactions? |
3. After the positive CMV test results were given to you, what would you say were the first few things you wanted to know? Was anyone able to answer those questions for you? |
4. In those first few days tell me how you felt about yourself in regards to the positive test? [Probe for feeling alone, feeling responsible, being scared, feeling overwhelmed, no major concerns, not a problem]. |
5. In the first few days that followed the positive CMV test results, tell me about any kinds of family or marital stress you experienced. [Moderator to probe for spousal issues like blaming, concerns about how my other children and how they would cope, worries about what my family would think/react]. |
6. Can you tell me what you thought about in terms of financial issues related to the positive test results? Did you worry about anything, what kinds of things? [Probe for concerns about enough money to have necessary follow-up tests done, concerns about health insurance coverage, worries about how I can care for this child and my other children]. |
7. Now let’s talk a little about the years following the initial test results. All of you participated in the follow-up clinic for some period of time. After the first few months, what kinds of new concerns or stressful issues surfaced? [Probe for stressors specific to self, marriage/spouse, and parenting skills/efficacy]. |
8. After the first few months, what kinds of new concerns or stressful issues surfaced related to your family, friends, and other social networks (e.g., church)? |
9. Now thinking about the medical professionals you met with over those first few years, were there any additional stressors from those meetings? What kinds of things frustrated you? What could have been explained better? Thinking about new parents today, how would you explain some of the things that frustrated you? |
10. Now thinking about those extra doctor visits and follow-up tests that your child went through, what kinds of stress or negative impacts did those activities or tests have on you and your family? [Probe for transportation hassles of getting to appointments, concerns about time off of work to get to appointments, costs of travel, difficulty with child care for other children]. |
11. Now let’s talk about your interactions with your child. Thinking back over those first few years, how would you characterize your relationship with your child? [Probe for stressors related to child behaviors, lack of affection, too much affection/attention, over-protectiveness]. |
12. If you have other children, did you feel that your relationship with your CMV+ child was different in some ways due to the CMV? How so? |
13. As your child got older, what kinds of concerns did they have about the doctor visits and follow-up tests? What could have been done or said to you to improve that experience for you and for your child? |
Positive Psychosocial Impacts |
(Note: moderator will rotate the positive and negative impacts sections among the focus group sessions to minimize any order bias]. |
Now let’s switch gears and talk about some of the positive aspects of having the CMV test done and the knowledge that came with that. |
14. Thinking back to initial diagnosis of congenital CMV infection in your newborn child, what would you say was the most positive aspect of getting those results? |
15. Now thinking about the following few years and the doctor visits and follow up tests that you and your child went through, what would you say are the best things about having done those visits and tests? [Probe for the kinds of concerns that the follow-up testing minimized]. |
a. What would you say were the worst things about having done those visits and tests? |
16. All in all, tell me about your thinking about the value of CMV testing and follow-up testing. Were the tests worth the troubles, stress, and issues that the testing caused for you as a parent? |
a. What about how worthwhile it was for your child? |
Communication about CMV Testing |
17. What are the three most important things you would want to say to other parents about having a child born with CMV infection? |
a. Does what you need to tell parents differ as the child gets older? How so? |
b. Where do you tell them to get more information if they need it? |
c. Are there good Internet resources you would send them to? Which ones? |
18. Who do you think does a better job helping with the information needs of parents of newly diagnosed children, other parents, doctors, nurses, others? What is that they do better? |
19. Based on your experience, do you think newborn CMV testing should be offered to all new parents? If you think so, what concerns would you have about that? Also, should the testing be mandatory or should it require parental permission? Why or why not? |
20. What are the three most important things you would want to say to other parents about having a positive CMV test result? |
a. Does what you need to tell parents differ as the child gets older? How so? |
b. Where do you tell them to get more information if they need it? |
c. Are there good Internet resources you would send them to? Which ones? |
Closing Thoughts |
21. Before we finish up today, I’d like to ask if there are any other topics or issues, positive or negative, that you would like to mention? |
Thank you all so much. Your thoughts and insights today have been very helpful to this project. We will be conducting group meetings with other parents and interviewing some parents as well. After that we will be conducting a mail survey to collect more detailed information from all of you. If you do not want to be contacted about that survey, please let one of the CMV staff people know that. One of them will also make sure you have parking tokens and are signed up to receive the $25 incentive as a token of appreciation for your interest. Thank you again and drive safely going home. |
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Characteristic | Number (%) |
---|---|
Number of interviewees per child | |
One parent/guardian | 26 |
Two parents/guardians | 8 |
Total children, total interviewees | 34, 42 |
Parent/guardian interviewed a | |
Mother | 32 (76) |
Father | 3 (7) |
Step- or foster parent | 3 (7) |
Grandmother | 1 (2) |
Unknown | 3 (7) |
Marital status of parents at time of interview b | |
Married | 21 (62) |
Divorced or separated | 9 (26) |
Widowed | 1 (3) |
Unknown | 3 (9) |
Child’s gender b | |
Female | 14 (41) |
Male | 20 (59) |
Child’s race and ethnicity b | |
Non-Hispanic, White | 26 (76) |
Hispanic, White | 3 (9) |
Non-Hispanic, Black | 5 (15) |
Parents’ socioeconomic status at time of child’s birth b | |
High | 16 (47) |
Medium | 13 (38) |
Low | 5 (15) |
Content | Messages | Supporting Parental Quote |
---|---|---|
Communications from health care providers | ||
1. Initial CMV Diagnosis | Explain the CMV basics, what is CMV, how you get it, who gets it, can you give it others. Explain that it’s common in the population, like a cold. Say it’s not exotic. Explain how it can be prevented for other members of their family and friends. | Parents who felt they were delivered the news well said their doctor told them their child tested “positive for a virus, a rather common virus, something like the common cold.” |
Explain the likely health problems, including the best- and worst-case scenarios and a brief description of the prognosis as best known at that point in time (see # 2). | Parents stressed the importance of knowing likely health problems, and that “the benefits could be that you get to know if there is progress, regression, what areas should you work on to improve the quality of his life and areas that you wouldn’t have to focus on as much by having this information, and also the health or knowledge of how is he doing, what are we expecting.” | |
Provide coping and comforting messages (see # 3). | Comforting messages of hope included “every child is unique, and these problems are unlikely to develop in your child.” Parents of asymptomatic children explained that these comforting messages also included best-case scenarios such as “[there is] a 90% chance of nothing happening.” | |
Tell parents they will be getting a list of symptoms to watch for and monitor in the future (see # 4). | This awareness was “priceless” for parents who felt that it gave them “just where to start when you feel so lost. It was like the beginning of a map.” | |
Provide all information in writing so parents can refer to it later and share with others. Post on the Internet also. | Parents described wanting to consult a “website [they] could trust” and wanted information in writing as they realized they “wouldn’t remember anything” from the initial conversation. | |
If child is symptomatic, offer mental health counseling and resources to parents experiencing significant stress, grief and fear during this stressful time. | Parents emphasized that they needed help coping with the stress and grief of realizing that their child was not a “perfect little baby.” They described the difficulty of being confronted with the knowledge that “this could be a lifelong challenge.” | |
2. Likely Health Outcome(s) | Explain the range of health outcomes parents can expect, from best- to worst-case scenario. All of it now. (Some mothers cautioned against overwhelming those women who are exhausted from childbirth.) | Parents wanted an “honest assessment or prognosis for their child.” Parents of asymptomatic children also stressed that they wanted medical providers to “reassure them that it is highly likely nothing will happen.” |
Explain the percentages for those who are asymptomatic and never develop health problems, and the percentages for those who do develop health problems. | Parents wanted to hear “here are the percentages, here’s the worst case, best case.” They appreciated when medical providers told them “statistics” and ”the likelihood that [their child] was going to have symptoms and what they might be.” | |
Answer the most difficult questions about prognosis, such as will they be developmentally challenged, will they be deaf. | These difficult conversations benefitted parents, who mentioned that “It prepared me for what could happen. If I hadn’t known then, it would’ve been even more sad.” Parents also emphasized that difficult conversations were vital because “not knowing the truth doesn’t make it not true.” | |
Remind them of the benefits of follow-up testing, early identification of testing, child development and parenting skills assistance. | Parents talked about the benefits of follow-up testing and assistance in helping them “[make sure their child is] on the right track and on schedule.” They also discussed how follow-up testing is beneficial because of the importance of “catch[ing] anything early.” | |
Message to other parents | ||
3. Comforting and Coping | Knowledge is Power. Educate yourself about what to symptoms watch for and monitor your child. | One father stated: “We started out the conversation saying that knowledge is enlightenment and that the more that you know the better you are prepared to deal with what is coming and what can be.” Another parent discussed how being “attentive” would allow for them to seek out “intervention [when their child] is struggling.” |
Stay positive and hopeful for your child. | One mother reminded parents to “look at this as an opportunity to fall even more deeply in love with your child.” Another emphasized that they see their child as “a person, not as a person with CMV.” | |
Be proactive and complete all follow-up testing. | Parents focused on follow-up testing as allowing them to make sure their child was “on the right track and on schedule.” | |
Prepare me for what lies ahead One day at a time; one decision at a time. | Parents emphasized the importance of “a plan, a step-by-step process of what will help your child most.” They stressed that they needed a “kind of plan for [their child] that [they] could keep track of.” | |
4. Symptom Watch | Keep an eye out for the main symptoms and keep getting them tested, especially for age, stage of development, and critical child development milestones. | Parents explained that just having “some knowledge about where [their child] was developmental-wise was very helpful.” |
Remember the important thing is that getting help early is why monitoring symptoms is important. They can do a lot to help your child if they catch it early. | A parent highlighted that monitoring symptoms is vital and discussed how “one time we came in for a test and she had lost 40% of hearing in one ear. I was so thankful we caught it early.” | |
Separate a typical child problem from real CMV symptom problems. So get educated on CMV symptoms, especially hearing issues, which is the most typical CMV symptom. | Parents suggested that learning about potential symptoms was helpful and that “the statistics on what is the likelihood that he was going to have symptoms and what they might be… that was very positive.” | |
Resources to share | ||
Provide parents brief information sheets about where to get reliable information and education about CMV and their child. They specifically wanted lists of trusted websites, books, bloggers, and newsletters (e.g., Cleveland Clinic newsletter). | Parents stressed that “they have to have somewhere to turn to for information.” | |
Let parents know about community or insurance covered comprehensive programs for child testing, treatment, and parent education. | A parent mentioned that they “would want some sort of program, somebody to handhold me through the ages and stages.” Another explained the importance of having a program to help them and stated that “without a program, it would be unconscionable to saddle a new parent with CMV test news.” | |
Let parents know where to find parent support groups—offline and online. | Parents pointed out the benefit of support groups: “Other parents, like you, can help lend a friendly ear and help you through your fear. They know what it’s like.” | |
Let parents know where to find names of medical specialists experienced in CMV, such as neurologists and audiologists. | Parents emphasized the importance of medical specialists: “without that support, without the guidance, without the knowledge that is shared from the doctors and from the clinic, I would be absolutely helpless in helping my child and just having the support there means a lot because if there is a need you know that there is someone there with you.”They explained that medical specialists provided “honest answers” and an opportunities to “get questions answered and settle my concerns.” |
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Lanzieri, T.M.; Hall, M.A.K.; Rau, A.; McBride, H.; Watson, D.; Rheaume, C.; Demmler-Harrison, G. Parental Perspectives on Communication from Health Care Providers following a Newborn Diagnosis of Congenital Cytomegalovirus Infection: A Secondary Analysis of a Qualitative Study. Int. J. Neonatal Screen. 2023, 9, 49. https://doi.org/10.3390/ijns9030049
Lanzieri TM, Hall MAK, Rau A, McBride H, Watson D, Rheaume C, Demmler-Harrison G. Parental Perspectives on Communication from Health Care Providers following a Newborn Diagnosis of Congenital Cytomegalovirus Infection: A Secondary Analysis of a Qualitative Study. International Journal of Neonatal Screening. 2023; 9(3):49. https://doi.org/10.3390/ijns9030049
Chicago/Turabian StyleLanzieri, Tatiana M., Mary Ann K. Hall, Ashrita Rau, Holly McBride, Danie Watson, Carol Rheaume, and Gail Demmler-Harrison. 2023. "Parental Perspectives on Communication from Health Care Providers following a Newborn Diagnosis of Congenital Cytomegalovirus Infection: A Secondary Analysis of a Qualitative Study" International Journal of Neonatal Screening 9, no. 3: 49. https://doi.org/10.3390/ijns9030049