Advances in the treatment and life expectancy of cystic fibrosis (CF) patients mean that motherhood is now a realistic option for many women with CF. This qualitative study explored the psychosocial impact and adjustments made when women with CF become mothers. Women with CF (
Cystic fibrosis (CF) is a chronic life limiting condition. Adults with CF experience a build-up of mucus and bacteria in the lungs which is inefficiently cleared, leading to increased susceptibility to infection and respiratory problems. The digestive system is also affected and complications with liver functioning, diabetes, and osteoporosis are common.
Advances in care over the last 50 years have resulted in a life expectancy reaching the late 30s [
With increased survival, the issues of pregnancy and motherhood have become even more important. Many adults with CF have expectations of healthy sexual relationships and hope for children [
Studies have highlighted the significant, and often difficult, psychosocial impact of parenthood for any woman and the coping and adjustment processes that take place [
While women with CF can successfully conceive and carry a pregnancy [
To date there has been little exploration of the psychosocial impact of motherhood on women with CF [
Ethical approval was obtained from the University of Leeds (HSLTLM/11/011). All participants gave fully informed written consent. Pseudonyms have been used throughout the manuscript.
We utilised a qualitative methodology, Grounded Theory (GT), which enabled detailed exploration of experience. GT is a widely used, inductive method of analysis, designed to develop theory through rigorous and credible identification and integration of categories of data. Categories or themes are identified from transcripts and, as analysis progresses, categories at increasingly higher, analytic levels of abstraction are identified. Emergent “theory” is therefore “grounded” in the data [
Eleven mothers with CF were recruited from an online forum (
Table
Health and treatment status of participants (“—” indicates missing data).
Participant | Age at diagnosis (in years) | FEV1 % | BMI | Chest Clearance Physio. | Nebulised treatment | Pancreatic enzymes | Vitamins | Inhalers | Antibiotics | CF-related diabetes |
---|---|---|---|---|---|---|---|---|---|---|
Pippa | 6 | 68 | 27 | ✓ | ✓ | ✓ | ✓ | ✓ | ✓ | ✓ |
Tamsin | 0.25 | 78 | 23 | ✓ | ✓ | ✓ | ✓ | ✓ | ✓ | |
Ellie | 0.5 | 67 | 20 | ✓ | ✓ | ✓ | ✓ | ✓ | ||
Jessica | 2 | 77 | 31 | ✓ | ✓ | ✓ | ✓ | |||
Chloe | 20 | — | — | ✓ | ✓ | — | — | — | — | — |
Kimberley | 14 | 42 | 21 | ✓ | ✓ | ✓ | ||||
Amy | 1.5 | 77 | 22 | ✓ | ✓ | ✓ | ✓ | ✓ | ✓ | |
Joanna | 4 | 27 | 21 | ✓ | ✓ | ✓ | ✓ | ✓ | ✓ | |
Heidi | Birth | 75 | 21 | ✓ | ✓ | ✓ | ✓ | ✓ | ✓ | |
Rachel | 0.25 | 68 | 22 | ✓ | ✓ | ✓ | ✓ | ✓ | ||
Adele | 0.75 | 103 | — | ✓ | ✓ | ✓ | — | ✓ | ✓ |
Qualitative data was generated from semistructured telephone interviews (mean length 57 minutes) which, commensurate with GT principles [
The Hospital Anxiety and Depression Scale (HADS) [
GT involves three levels of analysis: open, axial, and selective coding. Additional processes and “analytic tools” to enhance rigour are also utilised (e.g., “constant comparison,” where all new codes are compared to all existing codes to ensure consistency and differentiation). Analysis and collection ran concurrently.
Open coding involves analysing transcripts “line by line” and assigning “open codes” to each, designed to capture the essence of the content. Each interview yielded between 160 and 270 open codes that were then grouped into “conceptual categories” related in meaning. Between 12 and 18 conceptual categories emerged from each interview.
Axial coding involves the development of subcategories in order to enhance the explanatory power of the conceptual categories. Using open codes as a “starting point,” constant comparison of the data within and between conceptual categories led to their refinement. Between 39 and 79 subcategories emerged from each interview.
Selective coding involves reviewing previous categories in light of new ones generated from the most recent interview. This enabled validation (or disconfirmation) of new and existing categories contributing to the emerging overall model. The conceptual categories and subcategories emerging from the most recent interview were then integrated into the previous analysis, with relationships between categories being noted and the new categories helping to refine the overall model.
Final analysis yielded 15 conceptual categories and 175 subcategories. Here selective coding, which also involves integration and refinement of theory through the identification of core categories, took precedence. At this point, the GT model was also refined. Excess categories (i.e., which only one participant had contributed to) were excluded and similar subcategories collapsed and relabelled.
On completion of GT modelling there was one central process, three core categories, 13 conceptual categories, and 70 subcategories. This paper focuses on describing the 13 conceptual categories.
Several methods for assuring quality were adhered to [ “
A “verification step” was also completed, which involved the first author reviewing the data for discrepancies and overstatements in the final stages of analysis. Finally, an auditor check was conducted. This involved a colleague, with experience of conducting qualitative research at Ph.D. level and who was familiar with GT, checking the categories derived from the analysis. In order to do this he was provided with one randomly selected page from each of the 11 transcripts, with the originally selected meaning units and their allocated open codes marked on the page (total of 50). He was also provided with a list of the final core categories, conceptual categories, and subcategories and asked to match the meaning units and their associated open codes to the correct categories. The auditor was able to correctly allocate 49 of the 50 open codes to their associated categories. On only one occasion did he struggle to allocate a meaning unit to the correct category, and he attributed this to being unfamiliar with CF.
Between them the 11 participants (aged 22–41 years) had 13 children (aged seven months to 14 years), and one was also six months pregnant with her second child. Ten children were conceived “naturally,” two were conceived via intrauterine insemination (IUI), one was conceived via in vitro fertilisation (IVF), and one child was adopted. Four participants had completed undergraduate degrees, and seven had studied to A-Level and the others to GCSE. Two participants did not provide this information. Seven participants were homemakers, three worked part time, and one worked full time (paid). Ten were married and one was cohabiting. All partners were male and reported to be in full-time employment.
Results from the HADS [
The theoretical formulation details the three core categories (and the conceptual categories contained within them) and how they relate via a central process (Figure
Theoretical formulation: the relationships between the three core categories around a central process and the conceptual categories contained within them. Numbers in brackets indicate number of participants contributing to that category.
The first core category, “Living with CF,” relates to the day-to-day issues involved in living with the condition, regardless of parenthood. The second, “Becoming a Mother,” relates specifically to issues associated with having children. These core categories mutually influence one another and involve two sets of needs that have to be balanced, such as that of the mother’s for rest and treatment and the child’s for care and attention. A central way that participants achieved this balance was by “Pooling Personal Resources”—the third core category. All three core categories are linked through a central process: “Balancing Mother’s and Child’s Needs.”
The first core category described the day-to-day management of CF and contained five conceptual categories: response of services, response to services, treatment adherence, treatment as a constant consideration, and physical health.
There was a theme of variation in perceived support for the mothers’ desires and decisions to have children by their CF team. The majority of participants felt unsupported in their decision at some point, although many conceptualised this as caution by the team based on their health status at the time. Others described inconsistencies between and within CF teams which they felt was not always linked to health status. Around half the participants felt their CF team lacked experience in managing pregnancy, leading to provision of little or inaccurate information and lack of appropriate care. Some felt the communication between their CF and obstetric teams was inadequate and problematic.
Participants discussed what care they wanted from their team, including increased contact following the birth and more emotional support:
The majority felt that conversations with their team around their “day-to-day” life as a mother would help with treatment planning and in nurturing their relationships with them. They also discussed the importance of CF teams acknowledging the practicalities and difficulties of balancing treatment with parenting, particularly in arranging appointment times, in supporting them to do intravenous treatment at home where possible, and in developing alternative treatment regimens:
In general, the CF team were a valued source of support and information. The majority of participants had sought the opinions of their teams before making any firm decisions about motherhood. There was a tendency to give weight to doctors’ opinion, although some thought this was not always up to date or accurate and would sometimes challenge it:
Some participants described reducing their contact with their team or a particular doctor due to a lack of support of their decision to have children, which had an impact on their CF care:
The majority of participants described an initial disruption to treatment on becoming a mother, with some or all of their treatment getting missed (particularly physiotherapy and nebulisers). All but one participant described reestablishing their full treatment regime, usually within 2-3 months. Participants cited a lack of time for themselves as being a reason for treatment disruption, as well as disruption to their treatment routine. All discussed the importance of reestablishing new treatment routines and noted that this became easier over time, as they developed routines with their children:
Later, still, increased independence and understanding in their children led to participants having more time and thus increased adherence. All felt they were more adherent to their treatment after having children, due to their need and desire to stay well for them both in the short and in the long term:
The majority of participants acknowledged that CF treatment had become even more of a priority for them. Many invested in adapting treatment times and routines, placing themselves under pressure to maintain these and feeling upset if they missed them:
Some participants noted deterioration in their health after having children, with most attributing this to disruption in treatment. The majority discussed the impact their health sometimes had on mothering activities, for example, sometimes having to limit engagement in exhausting activities:
Similarly, mothering was also noted to affect their health (e.g., feeling fatigued). Fluctuating health and noting limited health as impacting mothering activities caused participants upset and frustration and guilt if they felt their CF was impacting on their parenting:
Adequate time for rest was highlighted as important in managing this.
The second core category described issues specifically associated with motherhood and contained five conceptual categories: planning and preparation, child as the focus, impact of CF on the child, amazing experience, and comparing oneself to healthy mothers.
All expressed long-standing desires to have children, referring to the amount of thought that had gone in to their decisions. Due to perceptions of limited life expectancy, many felt they had begun considering children earlier than they would have done had they not had CF; however half thought that it would never be possible. The majority of participants attempted to prepare themselves physically for motherhood (e.g., increasing lung function and putting on weight). However, preparation for other aspects was more problematic, given they felt there was a lack of psychosocial information given to them by their team relating to CF and motherhood. Some also felt there had been too much focus on pregnancy during discussions with their CF team and not enough on what life as a mother may be like:
Participants emphasised the importance of being organised and planning ahead in order to manage the dual demands of CF and motherhood.
All participants discussed the amount of attention that children, particularly babies, required, and this was given as a major cause of treatment disruption, particularly during the first few months:
The majority of participants discussed the sense of responsibility they felt on becoming a mother and a subsequent pressure to stay well. Participants worked hard to stay well, in order to keep themselves well to be able to play, avoid hospital, and extend their life expectancy:
All had adapted their treatment routine to fit around their children’s, which appeared helpful in facilitating adherence:
The majority of participants acknowledged the possibility of having a shortened life expectancy, which often led to feelings of guilt, as did having time away from their children for hospital admissions and treatment:
They reflected too on the impact of their children witnessing their CF treatment, which was felt to be positive, helping to “normalise” CF and increase their children’s understanding of it. Participants noted their children’s frustration at sometimes not having their mother’s full attention; however some actively involved their children in part of their treatment regime and felt this facilitated adherence, minimised children’s frustration at lack of attention, and increased their understanding:
Participants discussed how they wanted their children to understand CF in order to minimise any “shock” later on but described this as being difficult, particularly with younger children:
The majority of participants focused on explaining the short-term implications of CF, such as the need for treatment, rather than the longer term implications.
Enjoyment and disbelief at becoming a parent were common reflections, with some participants feeling a great sense of achievement. No mother expressed regrets over having had children, and instead they discussed the joy that their children brought them, in addition to the motivation to stay well and adhere to treatment:
This category contained references to perceived similarities and differences to healthy mothers. The majority of participants discussed feeling different to mothers without CF or another health condition, describing feeling that being a mother with CF is harder given the added burden of treatment and increased fatigue:
However, all participants also saw similarities in the changes and issues they had experienced to their perceived experiences of “healthy” parents.
The third core category described the use of social support in coping with the new demands of being a mother. It contained three conceptual categories: significance of the partner, wider support system, and resilience.
The majority of participants thought their partner had been their most important source of support in coping with motherhood and in balancing this with CF. Partners support allowed time out to rest and do treatment:
Partners were also described as being important in helping to manage the impact CF sometimes has on mothering:
Some participants also described receiving emotional support from their partner and the majority also acknowledged the significant impact becoming a parent had had on him.
The majority of participants acknowledged how significant the support of their friends and wider family had been in coping with motherhood. This enabled participants to care for themselves and was particularly important when their partner was unavailable or when they felt unwell:
Support often involved practical support (e.g., cooking). Some felt having children had brought their family closer together, often consciously due to an awareness of their limited life expectancy.
Participants drew on their own personal resilience. They discussed how they had adopted an attitude of “just getting on with it” in coping with the complex demands of CF and motherhood:
Participants also discussed drawing on their own personal strength of being able to think positively and focusing on the present. Some described a process of “working out” their own way of coping with the demands of motherhood:
Finally, a central process was highlighted that referred to the way participants strove to balance the twin demands of having CF and being a mother. They discussed how, in the early stages of becoming a mother, it was difficult to balance caring for their children with their need for treatment and rest, and their treatment routine could be disrupted as a result. They often had to put their own needs above their child’s, leading to feelings of guilt. However, there was an awareness described by all that prioritising their own health needs was also ultimately also for the well-being of their children:
Participants worked hard to achieve this balance and described using a number of strategies, including utilising the support offered by partners and extended family, fitting their treatment around their children’s routines, and involving their children in treatment. There was recognition that the ability to find this balance became easier over time as their children became more independent, they had more time to themselves, and they became more adept at establishing and maintaining routines.
Participants described many similar experiences to those described by healthy mothers, such as feelings of joy, a huge sense of responsibility, fatigue, and a lack of time to themselves [
Participants discussed a number of emotional experiences similar to those described by mothers with other chronic health conditions, including feelings of guilt and anxiety associated with feeling unwell, limited energy, and reduced life expectancy [
In this study, participants reflected on the impact that having a mother with CF may have on their children, with an awareness of their children’s frustration at not having their full attention at times (due to treatment). Overall, participants felt it was helpful for their children to witness their treatment regimens and to have a good understanding of their condition (which witnessing treatment was felt to help), in order to minimise any negative impact such as feelings of “shock” later on and to “normalise” their treatment and health limitations. This is in contrast to reports from some mothers with other chronic conditions who have reported feeling it best to “hide” their illness and/or treatment in order to protect their children [
Further differences were also noted when compared to reports from other chronically ill mothers. Participants in this study did not appear to feel any insecurity that they may not meet “societal expectations” of the “ideal” mother and placed no pressure on themselves to achieve it, as described by other chronically ill mothers [
While disruption to CF care was expressed by participants, they also noted that it became easier to adhere to treatment over time. Reasons given for this included increased time for treatment due to establishing routines and children’s increasing independence and understanding. All participants described an overall improvement in adherence rates when compared to their rates of adherence prior to having children, due to a desire and sense of responsibility to stay well, reflecting experiences of mothers with other chronic conditions [
Participants discussed a central process of needing to constantly balance their own needs for rest and treatment with their children’s needs for care and attention. This balance became easier to achieve over time due to the reasons given for increased adherence. However, participants also drew on a range of coping strategies in helping them to achieve this balance. One such coping strategy included utilising social support. Partners were identified as the most significant source of support, mirroring findings of mothers with and without other chronic health conditions [
Overall, participants appeared to be coping and well-adjusted to motherhood. This may be due to them engaging in a number of processes thought to be necessary for effective adjustment such as “assigning meaning” (e.g., reflecting on reasons for health deterioration) [
The majority of doctors were supportive of participants’ decisions to have children; however when this was not overt some participants “withdrew” from their teams. Participants noted the desire for psychosocial information relating to motherhood prior to, and during, pregnancy, but a significant lack of this and focus on medical issues. The need for psychosocial information relating to chronic illness and motherhood is well-established [
This study was rigorous in its application of GT (e.g., adopting a number of strategies to ensure that the conclusions were credible and “grounding” the data gathered from the participants). Recruitment from the online forum
Future research might extend the sample to include those in poorer health or, as the children of the mothers in the current study were comparatively young, track the adaptations and changing needs of mothers over time. It is also important to understand the experience of fathers with CF to inform appropriate care, given the advancements in assisted reproductive technology.
A number of complex and interrelating psychosocial processes are experienced by women with CF when they have children and a range of coping and adjustment processes take place as a result.
The theory developed in this study presents a rich account of the impact of motherhood and highlights relationships among the processes experienced. A number of novel findings were evident, suggesting that (i) complete treatment disruption is not inevitable with some participants experiencing little disruption and disruption being broadly time-limited, (ii) the utilisation of social support is not the only way of coping with good evidence of other forms of “problem-solving” and displaying of resilience, (iii) “emotional burden” is not always present over disclosing their CF to their child, (iv) having the CF team support decisions about pregnancy and parenthood is vital, and this needs be overtly conveyed, and (v) CF teams need a detailed understanding of motherhood and CF in order to provide information during discussions about having children and when planning for motherhood.
Recommendations for clinical practice based on the results are outlined in Table
Recommendations for clinical practice.
Recommendation | Detail |
---|---|
Relationship with the CF team | It is important that CF teams work to build and maintain effective relationships with their patients, being as supportive as possible. General “lifestyle” discussions can facilitate this |
Opening up discussions | It is important that CF teams open up discussions about motherhood as early as it is felt to be appropriate |
Information giving | Prior to, and during, the planning and preparing for motherhood, female patients should be given psychosocial information relating to motherhood as well as information on physical risks and health implications, in order to help them plan and prepare and to increase the accuracy of their expectations. The results of this research can serve as a useful foundation for information to be delivered to female patients |
Needs assessment | A reassessment of the new needs of the mother should be undertaken to establish these and how they may best be met |
Managing health and treatment | It is important that CF teams remain consistently aware of, and understand, a mother’s dual commitments and help manage these wherever possible to relive the burdens of CF-related care as much as possible |
Facilitating support | It is important that CF teams help to facilitate access to support for the new mother. This may include practical and emotional support from an appropriate team member. It is also important that the needs of her partner are also taken into consideration |
| Female patients with CF may benefit from being directed to the CFMothers.com website |
Communication and education | It is important that CF teams liaise closely with obstetric teams throughout the pregnancy and that obstetric teams have a good understanding of CF |
Following guidelines | It is important that female patients are given consistent and accurate information in regard to pregnancy and motherhood, to reduce any distress and confusion |
The authors declare that there is no conflict of interests regarding the publication of this paper.
This study was funded by Leeds Teaching Hospitals NHS Trust, who employed all authors, who were involved in study design (all authors), in analysis and interpretation (Cammidge and Latchford), and in writing the report and deciding to submit (all authors). The research is based on the lead author’s doctoral thesis, completed as part of clinical psychology training at the University of Leeds [