Care for children with severe neurologic impairment (SNI) often involves complex medical decision-making where therapeutic alliance between clinicians and families is essential. Yet, existing data suggest that communication and alliance are often lacking. This study aimed to examine aspects important to developing therapeutic alliance between clinicians and parents of children with SNI.
A purposive sample of expert clinicians and parents of children with SNI completed brief demographic surveys and 1:1 semistructured interviews between July 2019 and August 2020 at a single tertiary pediatric academic center. Interviews focused on the inpatient experience and transcriptions underwent thematic analysis by a study team of qualitative researchers with expertise in palliative care and communication science.
Twenty-five parents and 25 clinicians participated (total n = 50). Many parents were mothers (n = 17, 68%) of school-aged children with congenital/chromosomal conditions (n = 15, 65%). Clinicians represented 8 professions and 15 specialties. Responses from participants suggested 3 major themes that build and sustain therapeutic alliance including: (1) foundational factors that must exist to establish rapport; (2) structural factors that provide awareness of the parent/child experience; and (3) weathering factors that comprise the protection, security, and additional support during hard or uncertain times. Participants also shared concrete actions that promote these factors in clinical practice.
Therapeutic alliance between clinicians and parents of children with SNI consists of at least 3 factors that support communication and medical decision-making. These factors are facilitated by concrete actions and practices, which enhance communication about the care for children with SNI.
Creating therapeutic alliance, defined as supportive and compassionate professional relationships, between clinicians and parents of children with complex chronic conditions is essential to effective partnerships and communication.1–5 Children with severe neurologic impairment (SNI) have permanent static or progressive central nervous system conditions that result in cognitive and motor impairment as well as medical complexity.6 Parents and families of children with SNI face many important decisions for their child throughout their lives including decisions about technology or surgery, goals of care, and advance care planning.7–9 These can have life-changing impacts on both the child and the family.10 Parental input alongside therapeutic alliance with clinicians are essential to medical decision-making.
Despite its importance, clinicians and parents of children with SNI report a lack of therapeutic alliance. Existing data suggest that clinicians think parents underemphasize the life-limiting aspects of the child’s condition, whereas parents may feel their child’s quality-of-life is undervalued and that their priorities and perspectives go unheard, particularly in the inpatient setting.11–14 These difficulties can create conflict and lessen the support families receive during the acute decision-making process. Yet, no studies have examined clinician and/or parent perspectives on important factors that go into forming these alliances in care for children with SNI.15
This study aimed to examine aspects important to developing therapeutic alliance between clinicians and parents of children with SNI. We focused on inpatient experiences given the particular challenge of forming therapeutic alliance in this setting where continuity and long-standing clinician-parent relationships may not exist, and important decisions are often made.
Methods
This study was part of a larger “Developing a Communication Tool for Parents of Children with SNI and Clinicians” study conducted at a tertiary pediatric referral center in the Northwestern United States between July 2019 and August 2020. We followed the Consolidated Criteria for Reporting Qualitative Research (COREQ) guidelines.16
Clinicians
A purposive cross-sectional group of interprofessional clinicians were nominated by senior palliative care and complex care clinicians based on their expertise in the care of children with SNI. Care was taken to include not only physicians, nurses, and social workers, but also developmental therapists, care coordinators, and chaplains. Potential participants were sent an e-mail invitation with study information with up to 4 additional reminders over 3 months.
Parents
Eligible parent participants were identified by the study team through weekly review of the inpatient daily census of acute and intensive care units at the hospital. Parents were eligible if they were: (1) the parents or legal guardians of a child 6-months to 25-years-old with SNI (age through 25 was chosen because children with SNI often continue to be treated at children’s hospitals through young adulthood); (2) English-speaking; and (3) currently facing at least 1 high-stakes medical decision for their child (defined as decisions regarding technology or surgery, goals of care or advance care planning, or readiness for transitions of care such as the ICU to home or end-of-life care). If both parents wanted to participate, they were invited to complete interviews separately. The study team approached parents in person or by phone (depending on COVID-19 restrictions) after their child’s primary team was notified and confirmed eligibility.
Procedures
All participants completed a one-time 1:1 semistructured interview with either a trained clinical research coordinator or the study lead who was a palliative care physician with expertise in qualitative interviewing and care for children with SNI. All parent interviews were conducted by a researcher unknown to them and/or who had not cared for their child, whereas clinicians may have known their interviewer. The consent process provided information about the purpose of study, to better understand ways to facilitate communication and therapeutic alliance between clinicians and parents of children with SNI. Interview items were developed among the full authorship team which included interprofessional qualitative researchers with expertise in palliative care and communication science. Items covered: (1) decision making (eg, “Tell us about a decision you are currently facing. What has helped you in the process of decision making?”); (2) therapeutic alliance (eg, “Tell us about a memorable relationship you have had with 1 of your child’s clinicians”); and (3) communication (eg, “What strategies can be used to help parents feel supported during decision making conversations?”). The interview guide is available in a previous publication related to this work.17 Summary notes were taken during interviews and provided for participant checking.
Interviews were conducted in private locations in the hospital, with a small number of parent interviews occurring shortly after their child’s discharge by phone. Audio-recordings were professionally transcribed, and deidentified. After interviews, participants completed brief surveys on REDCap, a secure web-based tool for building and managing surveys. Parent survey items queried age, parenting role, race or ethnicity, and education. Additional details about the child were abstracted from the child’s electronic health record including child age, primary diagnosis, technology use, number of subspecialists and hospitalizations in last year, and code status. Clinician survey items queried profession, specialty, years in profession, number of children with SNI cared for in last 30 days and who died in the last year, and the number of conversations per month with parents of children with SNI about technology, care transitions, and advance care planning.
Subsequently, the coding team conducted inductive and deductive thematic analysis through an iterative multistage process.18 The coding team included physicians (A.T., J.B.), a social worker (D.J.), and a trained clinical research associate (H.L.) with backgrounds in qualitative research and expertise in palliative care and communication science. Transcripts were uploaded into Dedoose software for qualitative analysis using a codebook developed from emergent codes derived from the data and prefigured codes from existing literature on communication among parents of children with serious illness and oncology populations.3,11,19 Each transcript was reviewed by at least 2 study team members to determine codes until code saturation was reached.20 Discrepancies were adjudicated through biweekly discussions among the coding team.
After coding was complete, codes pertaining to therapeutic alliance were analyzed by the full authorship team which consisted of qualitative researchers with expertise in complex care and palliative care for children with SNI and communication science. The authorship team met via a series of videoconferences over 3 months for interpretative analysis where data were grouped and regrouped according to emerging themes. Additionally, codes pertaining to concrete strategies that support therapeutic alliance were extracted and synthesized. The institutional review board approved this study.
Results
Demographics
Of the 29 parents or legal guardians approached, 25 (86%) participated (1 declined and 3 consented but did not complete interviews; 2 couples participated who were parents of the same child) (Table 1). Many parents were mothers (n = 17, 68%), or fathers (n = 6, 24%). Parents were predominantly White non-Hispanic (n = 17, 68%); and were from racial and/or ethnic minority backgrounds (n = 8, 32%).
Demographic Information
| Variable | Results |
|---|---|
| Parents or legal guardians, n = 25 | |
| Age, y, median (IQR) | 38 (35–48) |
| Parental role, n (%) | |
| Mother | 17 (68) |
| Father | 6 (24) |
| Legal guardian | 2 (8) |
| Race and/or ethnicity, n (%) | |
| White, non-Hispanic | 17 (68) |
| White, Hispanic | 2 (8) |
| American Indian or Alaska Native | 1 (4) |
| Asian American | 5 (20 |
| Level of education, n (%) | |
| Less than high school | 1 (4) |
| High school | 4 (16) |
| Some college/Associate degree | 8 (32) |
| Bachelor’s degree | 4 (16) |
| Graduate degree | 6 (24) |
| Other | 2 (8) |
| Interview setting, n (%) | |
| In-person | 19 (76) |
| Phone | 6 (24) |
| Children, n = 23 | |
| Age, y, median (IQR) | 8 (5–15) |
| Primary diagnosis, n (%)a | |
| CNS static | 6 (26) |
| CNS progressive | 1 (4) |
| Congenital/chromosomal | 15 (65) |
| Pulmonary | 1 (4) |
| Chronic technology use, n (%) | 23 (100) |
| Number of subspecialists seen in the last year, n (%) | |
| 1–2 | 1 (4) |
| 3–5 | 8 (35) |
| 6–10 | 14 (61) |
| Number of hospitalizations in last year, n (%) | |
| 1–2 | 11 (48) |
| 3–5 | 8 (35) |
| 6–10 | 2 (9) |
| >10 | 2 (9) |
| Decisions being faced by parents, n (%)b | |
| Technology or surgery | 15 (45) |
| Transitions of care | 5 (15) |
| Goals of care or advance care planning | 13 (39) |
| Limited code status, n (%) | 4 (17) |
| Clinicians, n = 25 | |
| Clinical discipline, n (%) | |
| Physician | 8 (32) |
| Social worker | 5 (20) |
| Case manager | 3 (12) |
| Nurse practitioner | 3 (12) |
| Nurse | 2 (8) |
| Occupational or physical therapist | 2 (8) |
| Patient navigator | 1 (4) |
| Chaplain | 1 (4) |
| Specialty, n (%)c | |
| Complex care or hospital medicine | 10 (19) |
| Palliative care | 7 (13) |
| Critical care | 6 (12) |
| Pulmonology | 5 (10) |
| Physical medicine and rehabilitation | 5 (10) |
| Neurology | 3 (6) |
| Metabolic/genetic | 3 (6) |
| Development and behavior | 3 (6) |
| Neonatology | 2 (4) |
| Gastroenterology | 2 (4) |
| Neurosurgery | 2 (4) |
| Orthopedics | 1 (2) |
| Psychiatry | 1 (2) |
| Cardiology | 1 (2) |
| Surgery | 1 (2) |
| Years in profession, n (%) | |
| <10 y | 11 (44) |
| 11–20 y | 8 (32) |
| >20 y | 6 (24) |
| Number of children with SNI cared for in the last 30 d, n (%) | |
| <10 | 11 (44) |
| 11–20 | 6 (24) |
| >20 | 8 (32) |
| Number of children with SNI cared for in the last year who died, n (%) | |
| 0 | 2 (8) |
| 1–5 | 16 (64) |
| 6–10 | 5 (20) |
| >10 | 2 (8) |
| Average number of conversations about technology use for children with SNI per month, n (%) | |
| <5 | 12 (48) |
| 5–10 | 7 (28) |
| 11–15 | 2 (8) |
| 16–20 | 2 (8) |
| >20 | 2 (8) |
| Average number of conversations about transitions of care (eg, comfort care) for children with SNI per month, n (%) | |
| <5 | 16 (64) |
| 5–10 | 5 (20) |
| 11–15 | 3 (12) |
| 16–20 | 0 (0) |
| >20 | 1 (4) |
| Average number of advance care planning conversations for children with SNI per month, n (%) | |
| <5 | 20 (80) |
| 5–10 | 4 (16) |
| >10 | 1 (4) |
| Variable | Results |
|---|---|
| Parents or legal guardians, n = 25 | |
| Age, y, median (IQR) | 38 (35–48) |
| Parental role, n (%) | |
| Mother | 17 (68) |
| Father | 6 (24) |
| Legal guardian | 2 (8) |
| Race and/or ethnicity, n (%) | |
| White, non-Hispanic | 17 (68) |
| White, Hispanic | 2 (8) |
| American Indian or Alaska Native | 1 (4) |
| Asian American | 5 (20 |
| Level of education, n (%) | |
| Less than high school | 1 (4) |
| High school | 4 (16) |
| Some college/Associate degree | 8 (32) |
| Bachelor’s degree | 4 (16) |
| Graduate degree | 6 (24) |
| Other | 2 (8) |
| Interview setting, n (%) | |
| In-person | 19 (76) |
| Phone | 6 (24) |
| Children, n = 23 | |
| Age, y, median (IQR) | 8 (5–15) |
| Primary diagnosis, n (%)a | |
| CNS static | 6 (26) |
| CNS progressive | 1 (4) |
| Congenital/chromosomal | 15 (65) |
| Pulmonary | 1 (4) |
| Chronic technology use, n (%) | 23 (100) |
| Number of subspecialists seen in the last year, n (%) | |
| 1–2 | 1 (4) |
| 3–5 | 8 (35) |
| 6–10 | 14 (61) |
| Number of hospitalizations in last year, n (%) | |
| 1–2 | 11 (48) |
| 3–5 | 8 (35) |
| 6–10 | 2 (9) |
| >10 | 2 (9) |
| Decisions being faced by parents, n (%)b | |
| Technology or surgery | 15 (45) |
| Transitions of care | 5 (15) |
| Goals of care or advance care planning | 13 (39) |
| Limited code status, n (%) | 4 (17) |
| Clinicians, n = 25 | |
| Clinical discipline, n (%) | |
| Physician | 8 (32) |
| Social worker | 5 (20) |
| Case manager | 3 (12) |
| Nurse practitioner | 3 (12) |
| Nurse | 2 (8) |
| Occupational or physical therapist | 2 (8) |
| Patient navigator | 1 (4) |
| Chaplain | 1 (4) |
| Specialty, n (%)c | |
| Complex care or hospital medicine | 10 (19) |
| Palliative care | 7 (13) |
| Critical care | 6 (12) |
| Pulmonology | 5 (10) |
| Physical medicine and rehabilitation | 5 (10) |
| Neurology | 3 (6) |
| Metabolic/genetic | 3 (6) |
| Development and behavior | 3 (6) |
| Neonatology | 2 (4) |
| Gastroenterology | 2 (4) |
| Neurosurgery | 2 (4) |
| Orthopedics | 1 (2) |
| Psychiatry | 1 (2) |
| Cardiology | 1 (2) |
| Surgery | 1 (2) |
| Years in profession, n (%) | |
| <10 y | 11 (44) |
| 11–20 y | 8 (32) |
| >20 y | 6 (24) |
| Number of children with SNI cared for in the last 30 d, n (%) | |
| <10 | 11 (44) |
| 11–20 | 6 (24) |
| >20 | 8 (32) |
| Number of children with SNI cared for in the last year who died, n (%) | |
| 0 | 2 (8) |
| 1–5 | 16 (64) |
| 6–10 | 5 (20) |
| >10 | 2 (8) |
| Average number of conversations about technology use for children with SNI per month, n (%) | |
| <5 | 12 (48) |
| 5–10 | 7 (28) |
| 11–15 | 2 (8) |
| 16–20 | 2 (8) |
| >20 | 2 (8) |
| Average number of conversations about transitions of care (eg, comfort care) for children with SNI per month, n (%) | |
| <5 | 16 (64) |
| 5–10 | 5 (20) |
| 11–15 | 3 (12) |
| 16–20 | 0 (0) |
| >20 | 1 (4) |
| Average number of advance care planning conversations for children with SNI per month, n (%) | |
| <5 | 20 (80) |
| 5–10 | 4 (16) |
| >10 | 1 (4) |
CNS, central nervous system; IQR, interquartile range.
Primary diagnosis as listed in the electronic health record.
Parents could report facing multiple decisions for their child.
Clinicians could report working in multiple specialties (eg, a social worker for neurology and metabolic/genetics).
A total of 29 clinicians were approached and 25 (86%) responded and completed interviews (2 did not respond and 2 were too busy to participate). Clinicians represented 8 professions and 15 medical or surgical specialties. The majority reported >10 years of experience in their profession (n = 14, 56%) and caring for >10 children with SNI per month (n = 14, 56%).
Findings
Interviews lasted an average of 40 minutes (range 19–82). Responses from participants suggested 3 major themes that build and sustain therapeutic alliance including: (1) foundational factors that must exist to establish rapport; (2) structural factors that provide awareness of the parent/child experience; and (3) weathering factors that comprise the protection, security, and additional support during hard or uncertain times. These themes were described similarly in both parent and clinician responses. These themes are described below and presented with additional quotes in Table 2.
Themes and Representative Quotes
| Themes | Parents | Clinicians |
|---|---|---|
| Foundational factors: What must exist to “get in the door” | ||
| Trustworthiness | • If the parents don’t tell the nurses, ‘Hey, this is my boy. This is how he works, and I know him,’ and we don’t build a rapport, a bond based on each other’s trust in each other, then the system crashes. (Parent 4) | • Knowing that they have someone that will actually act on something relieves a huge amount of stress. (Clinician 4) |
| Feeling that another person is reliable | • I want to be able to know that I can trust and be confident in the people that are taking care of her, and that’s what matters to me. (Parent 9) | • [The clinicians] missed that part of [the father saying] . . . ‘We don’t trust you. That’s something you build,’ . . . and families don’t walk into this building trusting us, but a lot of us feel like they do. (Clinician 5) |
| Transparency | • [A clinician] who just admits from the beginning ‘I haven’t read the file. Tell me where you’re at.’ Okay, fine . . . At least honor that, versus making us feel like our 18 y of experience are nothing. (Parent 10) | • We use a lot of data in the medical world and allowing families to be part of that process, that transparency could really build trust. (Clinician 23) |
| Honesty and clarity in information sharing | • I actually prefer honesty, because you can’t have good medicine without honesty. (Parent 14) | • I’ve seen conferences where the clinician just says the hard thing and follows it up with empathy and compassion, [it] goes a lot better than dancing around it. (Clinician 5) |
| Respect | • I come into it with a really open mind, so I’m hoping that [clinicians] can as well . . . Not coming in just like ‘Oh, we need to do this, this and this,’ but coming in and ‘Oh, so what do you think we should do?’ (Parent 2) | • One of the things I ask is, ‘I’m gonna be taking care of your child for this week. What are some things that I should know about your child that can best help me take care of your child?” (Clinician 24) |
| Feeling admiration for another person | • If they learn the parents’ names, that’s really nice. I totally understand why they’re calling me “Mom” and why they’re calling [my husband] “Dad,” but it still feels really weird. (Parent 17) | • You have to allow the space for [parents] to have a perspective initially and then continue to respect their opinion and be okay dialoguing with them . . . from a nonjudgmental place, acknowledge their view. (Clinician 8) |
| Continuity | • It’s having to explain specific things, or when shift changes and the communication doesn’t quite get to the next person and [we] having to redo that all over again. It’s frustrating for us, and also sometimes it impacts his care. (Parent 12) | • [Families] dislike having to tell the story again and again, and I think that’s because then they don’t trust us, that we talk to each other, or that we know how to gather the information. So maybe showing that you know, but always checking in and making sure that things are accurate. I mean that’s a balance. (Clinician 12) |
| Maintaining the thread of information over time and utilizing existing relationships | • As a mom, if a doctor comes in and is like ‘Hey, so heard [your child] had a seizure and she has this going today,’ to me, that tells me that someone listened. I don’t have to repeat for the fiftieth time, ‘This is why we’re here.’ They’re ready to do something right now. (Parent 11) | • It’s so important . . . that people don’t come back and then start the conversation over from scratch . . . that somebody doesn’t come in and say, ‘Well he’s really sick.’ ‘Yeah, I know.’ ‘He could die.’ ‘No kidding. Thanks for that.’ . . . you have to be able to pick up the conversation where it left off. (Clinician 21) |
| Structural factors: What embraces, supports, and allows a “window” into the lived experience of the child and family | ||
| Perspective-taking | • I feel like they act like they understand, but they do not understand because they don’t live every day with a child that has extra things that are hard to do. (Parent 25) | • The way the siblings interacted with him, he’s just one of their own . . . and it helped me to understand where the family was . . . this was not a burden. (Clinician 11) |
| Seeing things from another point of view | • They [have] doctor views, I have the mom view. You put them together, it’s like the perfect view. (Parent 5) | • I can’t walk into a single room in this hospital and assume anything . . . but only listen and support. (Clinician 13) |
| Seeing the big picture | • I think it’s important for them to focus on what happens every day for that kid, like what does their normal day look like? What does the family’s life look like? . . . This is how committed they are to making sacrifices for this kid, or what they can sacrifice as far as time, money, whatever it is that they may need to sacrifice for a treatment or something,’ and I think getting to know their personal life a little bit more would ultimately help them in where they’re going with treatment. (Parent 11) | • When a child is in ICU, they’re bloated, tubes are everywhere. They don’t look like themselves and you see that picture of them with their siblings, smiling, being a kid and it’s just this great reminder . . . ‘This is a child, this is a human being of great value, not just a physiologic experiment laying here in the bed for you to mess with.’ . . . I try to say ‘Is that him? Who’s that? Is that his brothers and sisters? Tell me about that picture’ at some point just to kind of like them know that I see that, and I see what’s at risk. I see what the loss is that they’re facing. (Clinician 11) |
| Seeking to understand holistically | • [My son’s doctor] always bases on you, the family as a whole, or the patient as a whole, with his dad, mom, type of other family members, and that’s how I actually kind of like tell myself ‘Oh my god. This doctor is awesome, ‘cause that’s his job, but he also looks at the whole family. (Parent 18) | • There’s so much power in seeing family in their home, you know. Like how their room is set up, and the ways that they get around the house, you see. You get to see the love and the care. (Clinician 21) |
| Weathering factors: What helps through hard or uncertain times | ||
| Flexibility | • Some of the doctors, I feel they’re like ‘Well this is what’s best for this,’ and they’re kind of not as able to see all the other pieces that are in play. (Parent 17) | • The challenge we have in our system is that we have lots of specialties that will claim a part, said ‘Oh well I do this. Well, I do these. Well, we do this. Oh, I don’t do that.’ Well, nobody takes care of the whole kid. (Clinician 3) |
| Willingness to change and compromise | • We needed refills . . . and [they] refused because they hadn’t seen him in a year in clinic, and I said ‘Well that’s not our fault. We’ve been in the hospital. Your doctors, they’ve been down to see him. (Parent 3) | • Most of the time, there is at least a little bit of uncertainty, or something else we can do and a family wouldn’t be wrong in wanting to do that, and I think it’s always the worry that do they understand what this is gonna look like in x years? No, ‘cause none of us do. (Clinician 8) |
| • They said at his last hospital stay, ‘Oh there’s more choices now that he’s 18.’ ‘Well why couldn’t we have had those choices at 17, or 16? Why does [being 18] magically open up different drugs, when he really needed them 6 mo earlier. (Parent 10) | ||
| Open-mindedness | • It’s in those moments that all it took was someone being a little bit more creative, thinking outside the box a little bit and saying ‘You know what? We don’t normally do this, but there’s a lot of things that children’s hospitals don’t normally do.’ (Parent 11) | • You’re modeling that it’s okay not to know, but also to say ‘You know what? I don’t know, but I know who I can ask to find out,’ (Clinician 3) |
| Using imagination and new ideas | • I do notice that sometimes with SNI patients, it’s easy to focus on their impairments as a catch-all for any behaviors that we see. (Clinician 23) | |
| Compassion | • We had one [clinician] that basically said, ‘Well it’s not like she’s ever gonna walk anyways.’ Is that how you want to approach a parent? What does that mean? (Parent 8) | • I think with kids with SNI, part of it is the clinician showing a genuine interest in the child. A lot of people don’t know how to talk to people with [SNI] . . . and parents appreciate that so much. (Clinician 5) |
| Being concerned about other people | • I know that they care more about her and they have demonstrated a certain amount of love for her through her care. And I would say that I’ve seen the difference between when she’s seen as a patient and when she’s seen as someone I really care about. (Parent 1) | • Even kids who are neurologically impaired can still tell you a lot and you can get to know their baseline...it’s always the focus on ‘They can’t tell us, speak, show us,’ but they can. It just looks different. When they’re happy, not. I think there’s kind of a propensity to devalue their experience, and the parents I think see that too. (Clinician 23) |
| Humility | • Everybody that I’ve come in contact with has been very honest, forthright and willing to think outside the box with me, hear me out and be proactive, and care enough to get to know the whole situation. (Parent 2) | • This is a very complex system, and we’re not in control of everything . . . but we can do our best to show the parents that we’re advocating for them and that our intentions are to make sure that their child’s getting the best care. (Clinician 23) |
| Not feeling above other people | • [His Neurologist], we’ve bumped heads before, but it’s always been like a mutual respect type of butting heads. He understands where I'm coming from. I understand where he’s coming from. (Parent 24) | • Being forthright with people, yet having humility at the same time, I think that’s a balance. (Clinician 12) |
| Themes | Parents | Clinicians |
|---|---|---|
| Foundational factors: What must exist to “get in the door” | ||
| Trustworthiness | • If the parents don’t tell the nurses, ‘Hey, this is my boy. This is how he works, and I know him,’ and we don’t build a rapport, a bond based on each other’s trust in each other, then the system crashes. (Parent 4) | • Knowing that they have someone that will actually act on something relieves a huge amount of stress. (Clinician 4) |
| Feeling that another person is reliable | • I want to be able to know that I can trust and be confident in the people that are taking care of her, and that’s what matters to me. (Parent 9) | • [The clinicians] missed that part of [the father saying] . . . ‘We don’t trust you. That’s something you build,’ . . . and families don’t walk into this building trusting us, but a lot of us feel like they do. (Clinician 5) |
| Transparency | • [A clinician] who just admits from the beginning ‘I haven’t read the file. Tell me where you’re at.’ Okay, fine . . . At least honor that, versus making us feel like our 18 y of experience are nothing. (Parent 10) | • We use a lot of data in the medical world and allowing families to be part of that process, that transparency could really build trust. (Clinician 23) |
| Honesty and clarity in information sharing | • I actually prefer honesty, because you can’t have good medicine without honesty. (Parent 14) | • I’ve seen conferences where the clinician just says the hard thing and follows it up with empathy and compassion, [it] goes a lot better than dancing around it. (Clinician 5) |
| Respect | • I come into it with a really open mind, so I’m hoping that [clinicians] can as well . . . Not coming in just like ‘Oh, we need to do this, this and this,’ but coming in and ‘Oh, so what do you think we should do?’ (Parent 2) | • One of the things I ask is, ‘I’m gonna be taking care of your child for this week. What are some things that I should know about your child that can best help me take care of your child?” (Clinician 24) |
| Feeling admiration for another person | • If they learn the parents’ names, that’s really nice. I totally understand why they’re calling me “Mom” and why they’re calling [my husband] “Dad,” but it still feels really weird. (Parent 17) | • You have to allow the space for [parents] to have a perspective initially and then continue to respect their opinion and be okay dialoguing with them . . . from a nonjudgmental place, acknowledge their view. (Clinician 8) |
| Continuity | • It’s having to explain specific things, or when shift changes and the communication doesn’t quite get to the next person and [we] having to redo that all over again. It’s frustrating for us, and also sometimes it impacts his care. (Parent 12) | • [Families] dislike having to tell the story again and again, and I think that’s because then they don’t trust us, that we talk to each other, or that we know how to gather the information. So maybe showing that you know, but always checking in and making sure that things are accurate. I mean that’s a balance. (Clinician 12) |
| Maintaining the thread of information over time and utilizing existing relationships | • As a mom, if a doctor comes in and is like ‘Hey, so heard [your child] had a seizure and she has this going today,’ to me, that tells me that someone listened. I don’t have to repeat for the fiftieth time, ‘This is why we’re here.’ They’re ready to do something right now. (Parent 11) | • It’s so important . . . that people don’t come back and then start the conversation over from scratch . . . that somebody doesn’t come in and say, ‘Well he’s really sick.’ ‘Yeah, I know.’ ‘He could die.’ ‘No kidding. Thanks for that.’ . . . you have to be able to pick up the conversation where it left off. (Clinician 21) |
| Structural factors: What embraces, supports, and allows a “window” into the lived experience of the child and family | ||
| Perspective-taking | • I feel like they act like they understand, but they do not understand because they don’t live every day with a child that has extra things that are hard to do. (Parent 25) | • The way the siblings interacted with him, he’s just one of their own . . . and it helped me to understand where the family was . . . this was not a burden. (Clinician 11) |
| Seeing things from another point of view | • They [have] doctor views, I have the mom view. You put them together, it’s like the perfect view. (Parent 5) | • I can’t walk into a single room in this hospital and assume anything . . . but only listen and support. (Clinician 13) |
| Seeing the big picture | • I think it’s important for them to focus on what happens every day for that kid, like what does their normal day look like? What does the family’s life look like? . . . This is how committed they are to making sacrifices for this kid, or what they can sacrifice as far as time, money, whatever it is that they may need to sacrifice for a treatment or something,’ and I think getting to know their personal life a little bit more would ultimately help them in where they’re going with treatment. (Parent 11) | • When a child is in ICU, they’re bloated, tubes are everywhere. They don’t look like themselves and you see that picture of them with their siblings, smiling, being a kid and it’s just this great reminder . . . ‘This is a child, this is a human being of great value, not just a physiologic experiment laying here in the bed for you to mess with.’ . . . I try to say ‘Is that him? Who’s that? Is that his brothers and sisters? Tell me about that picture’ at some point just to kind of like them know that I see that, and I see what’s at risk. I see what the loss is that they’re facing. (Clinician 11) |
| Seeking to understand holistically | • [My son’s doctor] always bases on you, the family as a whole, or the patient as a whole, with his dad, mom, type of other family members, and that’s how I actually kind of like tell myself ‘Oh my god. This doctor is awesome, ‘cause that’s his job, but he also looks at the whole family. (Parent 18) | • There’s so much power in seeing family in their home, you know. Like how their room is set up, and the ways that they get around the house, you see. You get to see the love and the care. (Clinician 21) |
| Weathering factors: What helps through hard or uncertain times | ||
| Flexibility | • Some of the doctors, I feel they’re like ‘Well this is what’s best for this,’ and they’re kind of not as able to see all the other pieces that are in play. (Parent 17) | • The challenge we have in our system is that we have lots of specialties that will claim a part, said ‘Oh well I do this. Well, I do these. Well, we do this. Oh, I don’t do that.’ Well, nobody takes care of the whole kid. (Clinician 3) |
| Willingness to change and compromise | • We needed refills . . . and [they] refused because they hadn’t seen him in a year in clinic, and I said ‘Well that’s not our fault. We’ve been in the hospital. Your doctors, they’ve been down to see him. (Parent 3) | • Most of the time, there is at least a little bit of uncertainty, or something else we can do and a family wouldn’t be wrong in wanting to do that, and I think it’s always the worry that do they understand what this is gonna look like in x years? No, ‘cause none of us do. (Clinician 8) |
| • They said at his last hospital stay, ‘Oh there’s more choices now that he’s 18.’ ‘Well why couldn’t we have had those choices at 17, or 16? Why does [being 18] magically open up different drugs, when he really needed them 6 mo earlier. (Parent 10) | ||
| Open-mindedness | • It’s in those moments that all it took was someone being a little bit more creative, thinking outside the box a little bit and saying ‘You know what? We don’t normally do this, but there’s a lot of things that children’s hospitals don’t normally do.’ (Parent 11) | • You’re modeling that it’s okay not to know, but also to say ‘You know what? I don’t know, but I know who I can ask to find out,’ (Clinician 3) |
| Using imagination and new ideas | • I do notice that sometimes with SNI patients, it’s easy to focus on their impairments as a catch-all for any behaviors that we see. (Clinician 23) | |
| Compassion | • We had one [clinician] that basically said, ‘Well it’s not like she’s ever gonna walk anyways.’ Is that how you want to approach a parent? What does that mean? (Parent 8) | • I think with kids with SNI, part of it is the clinician showing a genuine interest in the child. A lot of people don’t know how to talk to people with [SNI] . . . and parents appreciate that so much. (Clinician 5) |
| Being concerned about other people | • I know that they care more about her and they have demonstrated a certain amount of love for her through her care. And I would say that I’ve seen the difference between when she’s seen as a patient and when she’s seen as someone I really care about. (Parent 1) | • Even kids who are neurologically impaired can still tell you a lot and you can get to know their baseline...it’s always the focus on ‘They can’t tell us, speak, show us,’ but they can. It just looks different. When they’re happy, not. I think there’s kind of a propensity to devalue their experience, and the parents I think see that too. (Clinician 23) |
| Humility | • Everybody that I’ve come in contact with has been very honest, forthright and willing to think outside the box with me, hear me out and be proactive, and care enough to get to know the whole situation. (Parent 2) | • This is a very complex system, and we’re not in control of everything . . . but we can do our best to show the parents that we’re advocating for them and that our intentions are to make sure that their child’s getting the best care. (Clinician 23) |
| Not feeling above other people | • [His Neurologist], we’ve bumped heads before, but it’s always been like a mutual respect type of butting heads. He understands where I'm coming from. I understand where he’s coming from. (Parent 24) | • Being forthright with people, yet having humility at the same time, I think that’s a balance. (Clinician 12) |
Foundational Factors
Foundational factors described the elements necessary for clinicians to employ to enter into an alliance with families. Participants described 4 subthemes that made up the foundation including trustworthiness, transparency, respect, and continuity.
Trustworthiness was described as the feeling that another person is reliable. For parents, trustworthiness centered on feeling heard by clinicians. For clinicians, trustworthiness was often described as their own ability to follow-through on commitments to families. Additionally, some participants suggested trust had to be earned rather than assumed.
“The parents play a big role in everything, so if you don’t have them on your side, then it’s not gonna be too great … You have [to] gain that trust” (Parent 5).
Another foundational factor was transparency, which involved honesty and clarity in information sharing. Parents felt transparency existed when clinicians proactively shared information that they knew was important, even when the information was difficult.
“What’s not helpful … [is when clinicians] feel like medical stuff is either normal or not a high enough priority to let us know, [because] what they feel is not that important or normal is a totally different scale of what our scale is as a parent” (Parent 8).
Respect was another foundational factor participants described. Respect meant that both parties were working together to meet the specific needs of the child.
It’s not a “‘We’re the doctors and nurses. We know more than you.’ It’s ‘We know more about the medical side of things. You know your child. We have to put all of our puzzle pieces together to get the whole picture’” (Parent 15).
Finally, participants described the value of continuity of information. Participants did not think this required longitudinal relationships, although this was helpful. Rather, participants felt that preparation and collaboration with those with a longitudinal relationship was critical for newer or rotating clinicians caring for the child.
“My hope would be that any time we have to add a new player to the team … that they would’ve reached out to her other specialists and done some research about her because she’s so complex” (Parent 16).
Structural Factors
Structural factors described the aspects of therapeutic alliance that enable clinicians to understand the parent's point-of-view. Structural factors included subthemes of perspective-taking and seeing the big picture.
Perspective-taking involved seeing things from another person’s viewpoint, which was essential because participants felt that stigma or bias about a child with SNI’s quality-of-life was common.
“We can get stuck on the problem or the impairment, and it’s important to hear from the family and what they see … love and know about their child” (Clinician 23).
Seeing the big picture was related to seeing the child’s well-being holistically, including within the context of their family as well as outside of the hospital.
“[The clinicians] asked about ‘What are his good times at home?’ So, we talk about things not just here within the hospital” (Parent 3).
Weathering Factors
Weathering factors were protective during difficult or uncertain times, providing safety, security, and additional support to the clinician-parent relationship. These factors were necessary particularly when children experienced declines from their baseline health or unexpected setbacks. Weathering factors included subthemes of flexibility, open-mindedness, compassion, and humility.
Flexibility described bending systems or practices to meet child and family needs. Participants discussed the need for flexible, rather than standardized, treatment recommendations so that there was collaboration that made the relationship feel safe and supportive.
“We were very entrenched in our view that we knew best, and I think there’s a resistance to letting families dictate care, but I think with this population … we really need their input” (Clinician 23).
Open-mindedness, or the ability to use imagination and new ideas, was another weathering factor that participants felt was expressed through creative problem solving and trying to help the child to live as well as possible.
“I think the reason why [my daughter] has been so successful is I always find doctors that want to learn more … that level of creativity and curiosity” (Parent 11).
Compassion was another weathering factor that manifested in the ways clinicians showed care directly for the child, used supportive language, allowed for emotion, and demonstrated patience.
“I could feel the love and passion they put in when they were dealing with [my child] … I see their work through [my child] because how easier his life has become” (Parent 24).
Finally, participants discussed humility as a weathering factor. Humility was described as a willingness to not know answers, apologize, celebrate, show up during difficult times/treatment failures, and give space.
“My contribution to this whole thing, is just making sure that [parents] are allowed space, if they want it … That there are human connections that can be made” (Clinician 17).
Clinician Actions and Practices to Build Therapeutic Alliance
Additionally, participants shared the concrete actions and practices that helped to actualize the foundational, structural, and weathering factors of therapeutic alliance. Some of these actions could be used by clinicians directly during interactions with parents (eg, to demonstrate the foundational factor of transparency, clinicians might “routinely assess what information is important to the parents and actively share it”), whereas others focused on clinician introspection practices that could be used to better understand the child’s/family’s experience (eg, to practice the structural factor of perspective-taking, clinicians might work on their own ability to “acknowledge that it is hard, if not impossible, to fully understand the demands placed on families”). These actions could be used to improve communication and clinical practice and are shown in Table 3.
Clinician Actions and Practices That Support Therapeutic Alliance With Parents of Children With SNI
| Factors | Actions and Practices |
|---|---|
| Foundational factors | |
| Trustworthiness | • Doing what you say you will do |
| • Not assuming trust but earning it | |
| Transparency | • Routinely assessing what information is important to the parents and actively sharing it |
| • Honesty/openness with families | |
| • Using terms and unbiased language that families understand | |
| • Admitting when you don’t know something | |
| Respect | • Acknowledging parents by using their actual names rather than “mom” or “dad” |
| • Including clinician roles and expected length of relationship with the family in introductions | |
| • Facilitating treatment plans you may not recommend or agree with | |
| • Listening, suspending judgement, and checking your understanding by summarizing what was said | |
| Continuity | • Getting information about the child ahead of the visit from the medical chart or other clinicians with relationships |
| • Gathering information before giving it so that you don’t repeat things that have already been said | |
| Structural factors | |
| Perspective-taking | • Acknowledging that it is hard, if not impossible, to fully understand the demands placed on families |
| • Integrating the family’s viewpoint into care plans and care decisions | |
| • Asking families about how they think their child sees, hears, interacts and about their child’s quality of life | |
| Seeing the big picture | • Understanding what the child’s life is like at home |
| • Seeing the child when they are well through videos or photos | |
| • Considering the entire family when caring for the child | |
| Weathering factors | |
| Flexibility | • Bending systems or practices to make care more seamless for the child |
| • Having an evolving rather than a fixed agenda | |
| Open-mindedness | • Thinking about novel applications of routine therapies or new therapies |
| • Openness to new or different ways of doing things | |
| • Actively seeking to learn from others about what you don’t know | |
| • Avoiding blaming all symptoms on the SNI | |
| Compassion | • Interacting and communicating directly with the child |
| • Responding to emotion and sharing your emotions with families | |
| • Celebrating, even the small things, with families | |
| • Focusing on helping the child and family have the easiest and best quality of life possible | |
| Humility | • Allowing relationships to grow even after conflict |
| • Acknowledging when you are wrong and apologizing | |
| • Naming your limitations in times of uncertainty or treatment failure | |
| • Standing by a family’s side and being there |
| Factors | Actions and Practices |
|---|---|
| Foundational factors | |
| Trustworthiness | • Doing what you say you will do |
| • Not assuming trust but earning it | |
| Transparency | • Routinely assessing what information is important to the parents and actively sharing it |
| • Honesty/openness with families | |
| • Using terms and unbiased language that families understand | |
| • Admitting when you don’t know something | |
| Respect | • Acknowledging parents by using their actual names rather than “mom” or “dad” |
| • Including clinician roles and expected length of relationship with the family in introductions | |
| • Facilitating treatment plans you may not recommend or agree with | |
| • Listening, suspending judgement, and checking your understanding by summarizing what was said | |
| Continuity | • Getting information about the child ahead of the visit from the medical chart or other clinicians with relationships |
| • Gathering information before giving it so that you don’t repeat things that have already been said | |
| Structural factors | |
| Perspective-taking | • Acknowledging that it is hard, if not impossible, to fully understand the demands placed on families |
| • Integrating the family’s viewpoint into care plans and care decisions | |
| • Asking families about how they think their child sees, hears, interacts and about their child’s quality of life | |
| Seeing the big picture | • Understanding what the child’s life is like at home |
| • Seeing the child when they are well through videos or photos | |
| • Considering the entire family when caring for the child | |
| Weathering factors | |
| Flexibility | • Bending systems or practices to make care more seamless for the child |
| • Having an evolving rather than a fixed agenda | |
| Open-mindedness | • Thinking about novel applications of routine therapies or new therapies |
| • Openness to new or different ways of doing things | |
| • Actively seeking to learn from others about what you don’t know | |
| • Avoiding blaming all symptoms on the SNI | |
| Compassion | • Interacting and communicating directly with the child |
| • Responding to emotion and sharing your emotions with families | |
| • Celebrating, even the small things, with families | |
| • Focusing on helping the child and family have the easiest and best quality of life possible | |
| Humility | • Allowing relationships to grow even after conflict |
| • Acknowledging when you are wrong and apologizing | |
| • Naming your limitations in times of uncertainty or treatment failure | |
| • Standing by a family’s side and being there |
Discussion
In this qualitative study of 25 clinicians and 25 parents of children with SNI, participant responses illuminated 3 major themes important to building therapeutic alliance: (1) foundational factors; (2) structural factors; and (3) weathering factors. Participants also shared concrete actions and practices that helped to actualize these factors in their relationships, including openness to see things from the parents’ point-of-view and being present during difficult times.
These findings add to the limited existing literature on clinician-parent relationships for children with SNI.21,22 In previous studies, bereaved parents have shared the importance of incorporating their expertise on their child’s well-being in decision-making.23 Additionally, aspects of trust, transparency, respect, and continuity have been emphasized.24,25 In pediatric oncology, studies of therapeutic alliance have supported themes of human connection, empathy, partnering, and inclusivity.26 This study’s findings align with these data and expanded to include additional structural and weathering factors that are essential to building therapeutic alliance between clinicians and parents.
We conceptualized the themes from this study into the “building a house” model shown in Fig 1. This model depicts how the factors support therapeutic alliance. The foundational factors are essential starting places for clinician-patient/parent interactions.27 This foundation provides an “entrance” for the next step of therapeutic alliance which is the development of a shared/mutual understanding. Clinicians can use structural factors such as the “windows” of the house to “see” the parents’ point-of-view. Finally, the weathering factors such as the “roof” provide “shelter” through flexibility, open-mindedness, compassion, and humility - which are essential to sustaining therapeutic relationships between parents of children with SNI and clinicians during difficult times.
“Building a house” of therapeutic alliance as suggested by clinicians and parents of children with SNI.
“Building a house” of therapeutic alliance as suggested by clinicians and parents of children with SNI.
Although all the factors are important to therapeutic alliance, we think this study highlights the importance of structural factors, or “windows” to “see” the child and family experience.21,28 Specifically, it may be that structural factors are imperative to understanding the lives of children with SNI and the values of their families – as misunderstanding about quality-of-life and care challenges are common.29–31 As other studies suggest, this is necessary to establishing a shared understanding of decisions being faced, what is at stake, and how to proceed with care.32,33
Furthermore, we think that families of children with SNI have important lessons to share about how clinicians can engage in ways to facilitate trust, mutual understanding, and compassionate care through effective therapeutic alliance. This may be essential for patients with chronic conditions, who need clinicians to understand barriers to chronic disease management and the impacts of longstanding chronic or progressive disease on patients and caregivers.34,35 Future work should explore perspective-taking tools, such as those that build an understanding of the parents’ experience of their child’s quality-of-life, that help clinicians and caregivers engage around seeing the big picture and each other’s point-of-view.33,36
Despite the importance of these factors, it is likely impossible to “do it all” in every clinician-parent relationship particularly in the inpatient setting. The same practices may not suit every clinician nor every clinical relationship. For example, when decision making is more urgent clinicians may only be able to establish some of the foundational and structural factors important to therapeutic alliance. Similarly, families may have different preferences regarding which factors of therapeutic alliance they find the most supportive.37,38 Studies suggest that clinicians may have certain ways they engage with families depending on their preferred communication style and the clinical context.39,40 We think that the variety of actions and practices proposed by participants in this study suggests that clinicians can use not only their inherent strengths, but also expand to different approaches, so that they have various strategies to engage different families in different clinical circumstances.
This study has several limitations. Although typical of qualitative studies, the sample only included participants from a single health care system limiting generalizability. Although coding saturation was reached, clinician participants represented a diverse number of professions and specialties limiting our ability to more deeply explore the perspectives of any one group. Additionally, although nearly one-quarter of participants were fathers and one-third self-identified as being from various racial and ethnic backgrounds, many of the parents were White mothers with higher levels of education, also limiting generalizability. Participants were also only English-speaking and exploring factors important to therapeutic alliance among parents who prefer a language other than English is an important next step. Participants were interviewed at a single timepoint, limiting our ability to evaluate changes longitudinally. Finally, although most of the interviews were conducted by clinical research associates, participants may have felt more or less comfortable sharing their perspectives with certain members of the study team. Ultimately, participants described many challenges which likely demonstrates their willingness to discuss difficult topics and how to improve therapeutic alliance.
Conclusions
Therapeutic alliance for clinicians and parents of children with SNI consists of at least 3 factors that come together to build a house for supportive communication and partnership. These factors are facilitated by concrete actions and practices, which further support care for children with SNI and their families.
ACKNOWLEDGMENTS
We thank our study participants who generously shared their perspectives with us. We also thank Kelly Shipman, MS for her support in this study.
Dr Bogetz conceptualized, designed, and conducted the study, analyzed the data, drafted the original manuscript and revised the manuscript; Drs Trowbridge and Rosenberg conceptualized and designed the study, analyzed the data, and revised the manuscript; Ms Lewis conducted the study, analyzed the data, and revised the manuscript; Ms Jonas and Dr Hauer analyzed the data and revised the manuscript; and all authors approved the final manuscript as submitted and agree to be accountable for all aspects of the work.
FUNDING: This work was funded by the Seattle Children’s Research Institute, Center for Clinical and Translational Research, Clinical Research Scholars Program. The funders were not involved in the design of the study and collection, analysis, and interpretation of data and in writing the manuscript. Dr Bogetz is supported, in part, by the Clinical Research Scholars Program within the Center for Clinical and Translational Research at Seattle Children’s Research Institute. Dr Rosenberg is supported, in part, by the National Institutes of Health (R01CA222486, R01CA225629). The opinions herein are those of the authors and do not necessarily represent those of the funders. Funded by the National Institutes of Health (NIH).
CONFLICT OF INTEREST DISCLOSURES: The authors have indicated they have no potential conflicts of interest to disclose.
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