A total of 45 women responded to the Facebook message. Fifteen women could not proceed in the study because of withdrawal before the interview took place (n=4), not suitable for the interview (insufficient comprehension of questions and language)(n=1), not available for an interview during the inclusion period (n=4), after extra information no willingness to participate (n=2) or cancellation by the researchers due to sufficient participants with a specific chronic medical condition (n=4). In two cases, we discovered during the interview that the participant was not living in the Netherlands with a consequence that these interviews were not included in the analysis. Four interviews were not audio-taped due to technical problems and one participant concluded during the interview that she had no wish to become pregnant and therefore was excluded from the analysis. Thereby, a total of 23 interviews were included in the final analysis (Figure 1)(insert figure 1: study flow chart). All women stated that they felt privileged to be asked for input in the study.
Study population
The study population was a heterogenous group of women with chronic diseases but almost equally divided in parity, marital status and desires to become pregnant (table 1). The median age was 31 years (range 23-38) with a median duration of their medical condition of 10 years (range 2 months -20 years). The majority of the women were highly educated. After asking for the type of GP, 16 women answered. The majority (n=15, 94%) had a GP in a group practice consisting of two or more GPs in one outpatient clinic. Of these participants, 47% (n=7) had an alternating GP within a group practice.
Table 1. Baseline characteristics of the participants (N=23)
Characteristics
|
N
|
%
|
Age in years median (range)
|
31 (23-38)
|
-
|
Marital status~
Married
Cohabiting
Divorced
|
12
9
1
|
52
39
4
|
Parity
Nulliparous
|
12
|
52
|
Country of origin (self-report)
The Netherlands
Other
|
21
2
|
91
9
|
Education level~
Low
Intermediate
High
|
3
7
12
|
13
30
52
|
Desire to achieve pregnancy
Active
|
13
|
57
|
Origin of medical condition
Gynecological
Cardiovascular
Endocrinological
Gastrointestinal
Pulmonic
Orthopedic
Multi-system
Other
|
4
1
2
2
1
5
5
3
|
17
4
9
9
4
22
22
13
|
Duration medical condition in years (median, range)
|
10 (2 months-20 years)
|
|
Type of general practice* (n=16)
Solo practice
Group practice
Own GP
Alternating GP
|
1
15
8
7
|
6
94
53
47
|
Results of coding and analyzing the interviews (n=23) were described to the four constructs of a framework for implementation of innovations: characteristics of the innovation (i.e. preconception care), characteristics related to the user (i.e. patient and the GP), characteristics related to organization of preconception care and characteristics related to the (socio-political) context.
First construct: Characteristics related to preconception care
a. Expectations, preferences and content of PCC, eligibility and relevance for the patient
All participants acknowledged the benefits of PCC in general but not all of them indicated themselves as eligible for a consult or underlined the need for a consult (n=6). The GP was seen for general information and first person to contact (n=11). The midwife was expected to give general information about pregnancies and advise on lifestyle (n=6). However, midwives played a less significant role because participants did not know a midwife offers PCC (n=4). The disease specific specialist was expected to give information about complications of the medical condition and changes of medication (n=13). Most participants would take the advice into consideration. In case of an advice not to become pregnant, nine participants would only follow if a pregnancy has too many risks for themselves or the fetus. In addition, four participants would still try to become pregnant, due to the fact that their desire to become pregnant was too substantial.
b. Self-search for preconceptional advice or pregnancy
Most participants (n=20) knew about the patient organization websites related to their chronic condition. Twelve had viewed information about pregnancy, however mostly the website referred them to their disease specific specialist. Five participants did not find information about pregnancy on their patient organization website. However, some medical conditions were considered too rare (n=3). Eight participants reached out to peers for information.
c. ZwangerWijzer
Sixteen participants were not familiar with the website ZwangerWijzer and nine were not referred to this website by a medical professional. After studying the website, it was considered to have a clear use of language (n=7) and seemed complete (n=6). Eight participants did not acquire new information and six times it was found not specific for their medical condition. The outcome of ZwangerWijzer would be shared with a medical professional by most participants if they were asked to (n=11).
Second construct: Characteristics related to the user (i.e. patient and GP)
a. Preparation previous pregnancy
Participants who were pregnant before (n=11) did not obtain information on pregnancy in combination with their chronic condition before getting pregnant and had not consulted a professional prior to their pregnancy due to the fact that the diagnosis had not been made at that time (n=5) or the participant desired to have children regardless of a consult with a medical professional (n=1). The other participants either consulted with their disease specific specialist (n=3) or with their GP and disease specific specialist (n=2).
b. Partner of the patient according to the participants
According to 15 participants, their partners would attend PCC consults. Eight partners indicated that an optimal participants’ health was essential prior to achieve a pregnancy. The greater part of partners did not envision a role for the GP in PCC (n=17) due to the fact that they wouldn’t visit the GP for preventive health care or would rather visit a disease specific specialist. Some partners believed the GP’s role was to refer (n=5) and some did not have a good relationship with their GP (n=2). Six partners would not mind some kind of role in PCC for their GP.
c. Knowledge of GP
The GP was assumed to have insufficient knowledge about the impact of the chronic disease on pregnancy, more specifically the related medications and pregnancy (n=15). However, participants didn’t mind their GP’s lack of knowledge as they expected their GP to refer them to a relevant disease specific specialist. They considered the medical conditions to be too complex for the GP. The participants didn’t expect the GPs to know everything about their sometimes rare conditions or medication.
d. Expectation of GP
The GP was believed to be an advisor on lifestyle and nutrition in general (n=5). The GP must acknowledge to what extent he or she thinks the information should be provided to the patient, as some indicated that they would rather want to look by themselves. The GP was expected to have a more pro-active attitude, so offer more support when needed and check up on you. The patients mainly wanted their GP to have a coordinating role.
e. Mental health support by GP
The GP was considered to be a trustworthy professional, whom you would visit most often and most easily, and preferably practices in the neighborhood of the patient (n=14). Despite these advantages, some patients would rather visit a psychologist for mental health support (n=3). Two patients indicated that they would rather not discuss their mental health with their GP.
Third construct: Characteristics related to the organization of preconception care
a. Actively asking by GP for PCC
When GPs actively asked patients about their desire to have children, it was appreciated. Similarly, when the GP was consulted to check up on their chronic disease (n=9) or about other complaints (n=10), actively asking was appreciated. However, three participants would find it inappropriate to be actively asked, if the consult was about other complaints. They indicated it would be unexpected and it should be introduced first with a pamphlet as it could be that they weren’t interested in gaining information on pregnancy. Four participants suggested that prior to that question they would like to have an explanation about why the GP wanted to have information about planning a pregnancy and suggested that the GP should sense the timing of that question.
b. Preferred professional and form
The preferred professional for general information on PCC was the GP (n=9), because the GP is most aware of the medical history and social situation and following this referral is still possible to a disease specific specialist who could confirm the safety of the chosen process to become pregnant. Eleven participants would like to have a PCC consultation with an obstetrician, preferably jointly with their own disease specific specialist. In two cases the disease specific specialist, not the obstetrician, was preferred for specialized individual preconception care due to having the most knowledge on the medical condition. Two participants preferred a specialized nurse because she would have specific knowledge on the medical condition and would have more time and patience than a doctor. The most preferred form of PCC consult was a face-to-face consultation, because participants (n= 12) indicated that this was a private matter.
c. Referral after PCC consult
If the GP indicated the need for a referral to a disease specific specialist, most participants would make an appointment (n=12) with the main reason to become well-informed. Two participants would only make a referral appointment when referred to a disease specific specialist, not to other professionals like a midwife (n=2). They thought midwives were only qualified for providing pregnancy care and didn’t know that midwives offered PCC.
d. Ideal situation
Seven participants described their ideal situation of receiving a timely referral from their GP to a disease specific specialist for PCC. Others described their ideal situation as discussing pregnancy and their condition with a GP to get better informed (n=2); with their disease specific specialist (n=3) or in a joint contact with an obstetrician and disease specific specialist (n=11).
The timing of PCC was ideally before they ceased contraception (n=8); when their chronic condition was more stable (n=3); when they didn’t succeed in conceiving naturally (n=2); after ceasing medication, but before ceasing contraception (n=1).
Fourth construct: Characteristics related to the (socio-political) context
a. Taboo
Six participants decided not to tell family and friends about their desire to become pregnant, simply because of their own choice. None of the participants felt pressure to have a conversation with a medical professional about their pregnancy consideration, mostly because their community would understand the importance of a well-informed decision. Furthermore, 17 women didn’t experience feelings of taboo when discussing their desire to become pregnant with someone other than their partner.
b. Fear of negative reactions
Eleven participants experienced negative reactions when discussing their considerations of achieving a pregnancy with family or friends. Four women were questioned by their community whether she would be able to raise a child due to the impediment their medical condition has on daily activities and financial concerns (n=4). Other concerns of the participants were about the effect of the pregnancy on the medical condition, the effect of the condition on the fetus and the genetic transferability which led to family and friends to reject and discuss the wish to become pregnant.
c. Health care expenses for PCC
Fifteen participants who did pay for their PCC did not consider it a barrier to accessing PCC. Five indicated that their deductible excess would be used entirely every year. These participants also indicated that if they didn’t have the financial means or didn’t spend all their deductible excess because of their chronic condition, paying for PCC would become a barrier to make a GP appointment and it would make the GP less approachable. Some participants (n=8) would be hindered to visit their GP when having to pay for PCC.
Based on the four constructs, an overview of facilitators and barriers could be derived (table 2). Barriers were mainly focused on unfamiliarity with roles of GPs and midwives or untraceability of information and on fear for negative reactions. Facilitators focused on benefits achieved by PCC, pro-active support of GPs and partners and the form of a PCC consultation.
Table 2. Overview of facilitators and barriers for organizing preconception care via general practitioners for women suffering from chronic diseases
|
Preconception care
|
Users
|
Organization
|
Socio-political context
|
Facilitators
|
Benefits that can be achieved by PCC
Sharing outcomes of ZwangerWijzer
|
Pro-active support of partners
GPs role in supporting mental health issues and PCC
|
PCC by disease specific specialist and obstetrician in a one stop-shop principle (face-to-face)
|
PCC free of charge
|
|
|
GPs practices in own neighborhood with enables quick entry to GP care
|
Pro-active support of GPs
|
|
|
|
Trust in and good relationship with GPs
|
Coordinating role of GPs
|
|
Barriers
|
Unknown role of midwives regarding PCC
|
Perceived lack of knowledge of the GPs by patients
|
No role for GPs according to partners
|
Fear of negative reactions
|
|
Finding of information on patient organization websites
|
Not indicating themselves as eligible for or need of PCC
|
|
|