Table 3 Pre-Implementation factors identified by clinicians, adolescents and parents/carers that impact adherence work

Inner Setting

Structural Characteristics

Social Architecture: Stability of Team

(−)

Multidisciplinary team with rotational allied health structure. Nursing team identified as most consistent by clinicians and parents and assume the coordinator role.

“Yeah, yes so we see everyone from OT, Social work, the nurse, doctor, physio” (Parent interview 1)

Instability of the team impacting consistency of care for families due to systems of communication, documentation and handover of adherence information.

“Clinic it’s harder because they [families] might be seeing a different therapist over all the different clinics and things like that get lost and don’t get passed on.” (Clinician focus group 3)

Inner Setting

Structural Characteristics

Networks and Communication

Size of organization

(−)

Large cohort. Impact on time per family, team communication and planning. Large tertiary organization.

“I think another challenge is, because our clinic is so big, that our time as a team to get together to talk about patients is so limited, in a meaningful way.” (Clinician focus group 2)

Team relationships

(+)

Evidence of positive team collaboration on adherence work and recent focus on multi-disciplinary work. Team identified as ‘open and engaged’.

“…I know that over the past 6 months in particular, even 12 months, we have been trying to move towards adherence from an MDT (multi-disciplinary team) as opposed to individually within clinical areas”. (Clinician focus group 2)

Networks and Communication

Team co-ordination

(−)

Clinicians perceived that adherence work was being completed by individual clinicians, within their scope of practice. However, they did not feel that this process was coordinated as a team. Perceived impacts included number of recommendations to families and work together on prioritizing goals.

“But I do think that as a whole, we are probably not integrating our adherence together, I think that we tend to still work very much on our own and on our own area that we work on.” (Focus group 2).

Both parents and clinicians discussed that clinic coordination resulted in longer, unpredictable appointments for families. Some parents acknowledged barriers around accessing the professionals they wish to see within their clinic appointment.

“Sometimes we need to talk to the [clinicians] or something about things, but they are often quite hard to get hold of. So, by the time they get hold of you, you’ve already resolved the issue coz you’ve talked to someone else or you just get over it and you just don’t want to talk about it anymore.” (Parent Interview 4)

Informal team communication

(−)

Communication between team members regarding adherence assessment or intervention was infrequent during, and outside of clinic. This resulted in reduced team awareness of adherence interventions underway with other clinicians and ensuring consistency of messaging to families.

“It’s hard especially in clinics, there’s not that communication with all the clinicians going in and out of what everybody is telling them [families] within that clinic. So, you don’t know how many things they’ve been given that day.” (Clinician focus group 2)

Parents also voiced concerns regarding team communication.

“It can be frustrating, very frustrating. It’s like is anyone, anyone on the same page? Like does anyone talk to anyone else?” (Parent 6).

Formal team communication

(−)

Team communication within formal communication structures such as meetings and clinical notes was reported to be challenging by the clinicians. Reduced clinician attendance and available time impacted the perceived effectiveness of communication in clinical meetings. Gaps were identified in clinician handover. Accessing adherence information in clinical notes was a barrier due to length of notes, available time in clinic for chart review and inconsistent systems in reporting adherence interventions. In effect, information sharing through the team was significantly impacted.

“The pre-clinic meeting should be a good opportunity to do that but sometimes I don’t feel like its necessarily as effective as it could be just because we are limited for time. Trying to run though all the patients and not everybody that’s at the meeting is always the one that’s been involved with the patient to really know the deeper level of information.” (Clinician focus group 2)

Culture

Organisational culture “clinician flexibility”

(U)

Team discussions highlighted that clinicians had a high level of flexibility in how they conduct adherence work. This was guided by a culture where individualized care based on the perceived young person’s or family’s needs directs services provided, rather than outlined tasks or policies.

“… you have to be able to adapt what you do to the individual child and family circumstance.” (Clinician focus group 3)

“I wouldn’t say that I have one particular goal, it’s just about trying to get the best outcome for them, however that looks for that family” (Clinician focus group 2)

Clinician beliefs “paternalism”

(U)

An underlying belief emerged within the clinician group that “adherence” is an unattainable target for families to achieve. Team members reported that they believed prescribed treatment plans are not realistic and place a large burden on families. As a result, goals and clinical decisions are influenced by this belief.

“It’s very easy when things are not going brilliantly with a kid to just keep adding in therapy. But you know, in a teenager who is busy and got school commitments and sport commitments and social commitments and let’s be realistic like… what are they actually going to achieve?” (Focus group 3)

Contrasting consumer beliefs to “paternalism”

(U)

In contrast, parents reported that they would prefer their team to discuss all treatments options and preferences with them rather than assuming family’s burden.

“I wonder, do they think that we already have enough? I’m just wondering, do they feel that “if we give them something else, are they not going to be able to manage” or something? I don’t know, there just seems to be hesitation in giving us more stuff. […]” (Parent 6)

Clinician beliefs “Adherence change is slow”

(U)

Beliefs about adherence work emerged. Clinicians discussed a shared belief that changing adherence is a slow process and that to see changes in adherence, a good therapeutic relationship with families is central.

“…sometimes we just have to plug away. Sometimes like dripping water on a stone, it might have some effect long term and we just have to keep doing what we are doing.” (Clinician focus group 2)

“I mean generally speaking…The person that understands their disease less and feels that they have less of a relationship with their team and their consultant are not going to do as well.” (Clinician focus group 1)

Implementation Climate

Receptivity to change

(+)

The team appeared open to change, perceiving “room for improvement” in standard adherence care. Clinicians were interested in innovations that were sustainable and supported timely delivery of adherence work.

“I think we could definitely improve on it [adherence work]” (Clinician focus group 3)

“… And we could probably do it earlier. But I think we miss the boat a lot of times.” (Clinician focus group 3)

Available resources

(−)

Clinicians reported that time and staff resourcing impact current clinical care. No additional resourcing would be allocated to support implementation of an adherence protocol.

“I think clinic time is a big one for everyone. If we are all going to do really good, detailed, thorough education on every kid to help with adherence and the child’s understanding of the condition. We just don’t have enough time.” (Clinician focus group 1)

Readiness for intervention

High awareness of user’s needs

(+)

Parents identified four key needs to improve CF clinic care: (1) need for increased social/ emotional support, (2) need for consistent team communication about treatments, (3) need for more efficient use of appointment time, (4) need for increased family involvement in treatment planning. All of these four key needs were independently identified by the clinicians who participated in the focus groups, suggesting that the needs of the CF clinic families are generally recognized by the organization.

Both clinicians and parents identified that the clinic individualized the delivery of care to families. Relationships between families and the CF clinic team were considered high priority to both users and clinicians. Parents reported an overall positive experience of the CF clinic.

Patient centred focus

(+)

“Everybody just makes us feel... feel welcomed, as I said… doesn’t just treat us like just another patient (Parent 1)”

Outer Setting

Needs and Resources of patients and families

Individual knowledge and beliefs about adherence

(U)

Individual clinicians discussed that understanding of adherence impacts how adherence work is conducted. Adherence work was considered “hit and miss”. However, the reasons why sometimes therapy is effective and sometimes ineffective was not known to clinicians. Clinicians also expressed that adherence work can be challenging and clinicians can feel that their work is not impacting families. Multiple team members expressed interest in completing adherence work as part of their role.

Parents reported that they believe the clinic has a role in supporting their adherence however, multiple parents could not identify a clinical intervention or aspect of CF clinic that directly impacts on home adherence. The parents reported that a commitment to “just get treatment done”, considerations about child’s best interests, family functioning and external support from the CF community were influential factors outside the clinic that influence home adherence. The majority of parents discussed that other people who have CF and/or their families are the best source of information to provide information about CF treatments.

Characteristics of Individuals

Impact of relationships

(U)

The relationship between families and the clinical team was discussed at length in both clinician’s focus groups and parent interviews. Maintaining a long-term therapeutic relationship was a key consideration of therapist interactions and considered central to affecting adherence. Parents discussed the positive impact of familiarity with the clinicians on the child and family’s interactions in the clinic, understanding the child’s preferences and supporting home adherence by referencing conversations and people known to the child when at home.

“You see I think like with adherence I really think that relationship building is so key and so if you can’t build that relationship because you don’t know that patient well or you don’t see them frequently enough it’s really hard to maintain that adherence.” – Clinician focus group 2)

“I find that if I’ve known one of the staff longer, for a longer amount of time, I can talk to them easier.” – (Adolescent 1)

Non CFIR constructs

Parental decision making

(U)

Outside of the interactions that take place in clinic, parents discussed how adherence at home is made more complex when they need to consider the “costs” of optimal treatment adherence at the family level. Parents of adolescents discussed that they had to rationalise and prioritise treatment recommendations in the context of their family unit, quality of life and relationship with their child with many families actively making sub-optimal treatment decisions to support family relationships and child’s quality of life.

“… it’s about my relationship with my kids. Coz I was really hard on my 17-year-old when she was going through a time of wanting more independence with her treatments and her health. And I just didn’t want to give that.... and we had a very, very poor relationship for about 12 months and that’s not worth it. Yep, I’d rather a good relationship with my kid.” (Parent