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Fathers’ Perspectives on the Emotional Impact of Managing the Care of Their Children with Cystic Fibrosis

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Fathers’ Perspectives on the Emotional Impact of Managing the Care of Their Children With Cystic Fibrosis
Claire C. Hayes, MSc, BSc, RCN, RM, RGN Eileen Savage, PhD, MEd, BNS, RCN, RGN

In this article, fathers' perspectives on the emotional impact of managing the care of their children with cystic fibrosis (CF) are examined. The constant worry of living with the unpredictability of CF was highlighted in this study, drawing on interviews with eight Irish fathers, who experienced difficulties communicating their concerns to others. Despite efforts at not dwelling on CF, fathers described being surrounded by constant reminders. To minimize the emotional impact of managing their children's care, fathers described living from day to day rather than looking into the future. These findings demonstrate the need for supportive interventions in helping fathers manage the emotional demands of caring for their children with CF. © 2008 Elsevier Inc. All rights reserved. Key words: Fathers; Children with CF; Emotions; Worries

YSTIC FIBROSIS (CF) IS a progressive, lifeshortening, multisystem disease of the exocrine glands, which predominately affects the respiratory tract and the gastrointestinal tract. Increased mucus production in the small airways resulting in progressive lung disease is the primary cause of death (Orenstein, Winnie, & Altman, 2002). Improvements in life expectancy into the third and fourth decades can be attributed to scientific and medical advances in treatment interventions (Littlewood, 2005). However, treatment interventions place particular demands on parents, especially those of younger children. The daily management of CF typically involves giving children a high-calorie diet; providing pancreatic enzyme replacement therapy, medication, and chest physiotherapy; and monitoring children's health status. Within the context of these demands, the
From the Catherine Mc Auley School of Nursing and Midwifery, Brookfield Health Sciences Complex, University College Cork, Ireland. Corresponding author: Claire C. Hayes, MSc, BSc, RCN, RM, RGN, Catherine Mc Auley School of Nursing and Midwifery, Brookfield Health Sciences Complex, University College, Cork, Ireland. E-mail: 0882-5963/$-see front matter © 2008 Elsevier Inc. All rights reserved. doi:10.1016/j.pedn.2007.09.002


purpose of this article is to examine Irish fathers' perspectives on the emotional impact of managing the care of their children with CF. BACKGROUND To date, little research has been conducted on the views and experiences of fathers concerning their involvement in caring for their children with CF and what the day-to-day emotional impact of this might be for them. Existing knowledge on how parents manage the care of their children with CF is predominately based on research on mothers' perspectives (e.g., Gibson, 1995; Hodgkinson & Lester, 2002; Stewart, Richie, McGrath, Thompson, & Bruce, 1994). These researchers have described mothers as the principal caregivers who find the responsibility for managing their children's CF care to be unequally shared between them and their partners. This unequal sharing of responsibility between parents has been found to be stressful and isolating for mothers. A limitation of these studies, however, is that the views and experiences of fathers were not considered. It cannot be assumed from the proxy accounts of mothers that fathers' involvement in their children's CF care is less equal than that of mothers and that their involvement does not have an emotional impact on them.


Journal of Pediatric Nursing, Vol 23, No 4 (August), 2008



When Katz and Krulik (1999) examined differences in stressful life events and self-esteem between 80 fathers of children with a range of chronic illnesses and 80 fathers of healthy children, significant differences were found. Fathers of children with chronic illnesses reported a greater number of stressful life events concerning personal, family, and social life changes. These fathers also reported having lower self-esteem than fathers of healthy children. When Hovey (2003) examined day-to-day concerns of 48 fathers of children with CF and other chronic illnesses compared with 51 fathers of healthy children, significant differences were found between them. Although the concerns between the two groups were qualitatively the same, they differed in degree of concern, with fathers of chronically ill children reporting significantly higher levels of concerns. A principal concern for fathers was their children's health, a finding also identified in other studies concerning chronic illnesses other than CF (Cayse, 1994; McNeill, 2004). Specifically, fathers have reported concerns about the physical effects of illness, symptom exacerbations, and the implications of the unpredictable nature of chronic illness on their children's future lives. Previous research has indicated that fathers can experience a range of emotions when dealing with their children's chronic illness; these include anger, pain, guilt, and anxiety (McGrath & Chesler, 2004; McNeill, 2004; Peck & Lillibridge, 2005). These studies suggest that fathers manage these emotions in various ways, for example, emotional withdrawal, emotional expression, avoidance, and being optimistic. Emotional withdrawal has been described as a strategy characterized by the reluctance of fathers to openly express the depth of their feelings (McNeill, 2004). McGrath and Chesler (2004) interpreted emotional withdrawal by fathers as a gendered expression of male social norms of self-control and of denying or covering vulnerability. In contrast, it is known that some fathers can and do openly share their feelings, for example, by crying and talking about their concerns to others (McGrath & Chesler, 2004; Sterken, 1996). Some fathers adopt avoidance strategies to deal with their emotions. In coping with the uncertainty of childhood cancer, Sterken (1996) found that common avoidance strategies used by fathers included drinking alcohol, using drugs, and putting increased energy into work life. Because being optimistic is important when dealing with uncertainties, chronic illness manage-

ment involves positive thoughts, positive comparisons, and positive outlooks (Sterken, 1996). The study of Peck and Lillibridge (2005) on four Australian fathers of children with various chronic illnesses found that the fathers' being optimistic in their expectations of their child's achievements was important to help them manage the emotional turmoil they experienced initially following their children's diagnoses. Managing their emotions in this way helped them gain a sense of normality in their lives. The fathers explained that they preferred to focus on their children's immediate day-to-day lives and avoided thinking about the future to avoid painful thoughts concerning the deteriorating effects of the illness. Taking a positive stance in dealing with emotions took time to evolve, as described by the fathers. Although some inroads have been made in studying fathers' experiences of caring for their children with chronic illnesses and its emotional impact, this remains a relatively unexplored area of research. Previous researchers have highlighted a continued need for research on fathers' perspectives within the contexts of specific illnesses and of different age groups of children (McNeill, 2004; Peck & Lillibridge, 2005), using qualitative methodology in particular given the limited knowledge available on father's subjective experiences (McNeill, 2004). In this article, fathers' perspectives on the emotional impact of managing the care of their preschool children with CF are examined.

METHODOLOGY The perspectives of fathers described in this article are drawn from a descriptive qualitative study that aimed to explore their experiences of caring for their children with CF, with consideration to their level of involvement and the physical, emotional, and social health effects of caregiving. The following sample groups were eligible for inclusion into the study: biological fathers of children with CF; fathers of children aged between 1 and 6 years diagnosed as having CF at least 1 year because most children are diagnosed within the first year of life and this is a period when children are most dependent on their parents for care. Fathers of acutely sick or dying children were excluded to spare families



the intrusion of research at a difficult time in their lives. Following ethical approval to access fathers at one CF center in Ireland, contact details of 10 fathers who met the inclusion and exclusion criteria were sought from the CF clinical nurse specialist. The fathers were then sent study information leaflets and a letter inviting them to participate. A follow-up telephone call was made by the author, and fathers were informed of their right to refuse to participate. Eight fathers of sons with CF aged between 18 months and 6 years agreed to take part in the study. Two fathers declined to participate. One declined because he was going away for the holidays, and the other declined because he wanted to keep his relationship with his child private. All participating fathers had completed second-level education and worked fulltime, except one who was unemployed. All were married; of the wives of the participating fathers, five worked full-time in the home, and three were in full-time employment outside the home. The number of children from these families ranged from one to five. Tape-recorded interviews, which lasted between 45 and 60 minutes, were conducted with fathers in their own homes. Interviews were guided by a set of topics relevant to the research aim, for example, involvement in care, concerns of fathers, upsetting aspects of having a child with CF, and ways of dealing with emotions. Interviews were open and exploratory in nature to allow fathers to describe their experiences spontaneously and as relevant to them. Data analysis was done manually using thematic content analysis (Burnard, 1991). The eight audiotapes were transcribed verbatim and then reread several times to help the author become immersed in the data. In a line-by-line analysis of the transcripts, codes were freely generated, following which, a list of codes was reviewed and clustered into analytical subcategories and finally into 35 overall categories. From these 35 categories, 4 overarching themes and 12 subthemes emerged, 1 of which concerned the emotional impact of CF caregiving on fathers. Trustworthiness was established by using a decision trail of the research process (Koch, 1994). Tape recording ensured that the fathers' accounts were accurately represented, and verbatim quotations were inserted at appropriate points throughout the findings to illustrate from the data how the themes were derived, thereby enhancing the credibility of the study. A reflexive

account was also provided to enhance transparency of research activity.

RESULTS The fathers' accounts indicated that they were involved in every aspect of their children's CF care, albeit to a lesser extent than their wives for the most part. Irrespective of their level of involvement, dayto-day caregiving impacted on the fathers' emotional well-being as described in the themes— constant worries, difficulties with talking about CF, and living from day to day.

Constant Worries
Fathers explained that living with CF was a constant worry, in that CF was incessant and unpredictable. One father said:
… it's always there, like a cloud… that's the way we feel, we don't know what's around the corner… (P7).

Fathers worried about their children's CF care in particular. For example, one father reported that his “biggest fear” was that his son would lose his appetite and acknowledged that it “wouldn't be good for him to be losing weight” (P8). Another father admitted that he would be “very afraid” that his son might miss medication, which he described as his “one big worry” (P1). Both comments highlight the same underlying concern of fathers that missing a dose of medication or essential calories would threaten their children's health. These fears prompted fathers to be proactive and to plan ahead. For example, one father spoke of ensuring that his son's medication cupboard was always well stocked. Proactive planning of CF care was also illustrated in the fathers' accounts of monitoring and responding to symptoms. One father commented that “if he gets a sniffle we won't take a chance” and that although his son receives the flu vaccine annually, both he and his wife were “constantly watching him” (P7). This father's remark demonstrates that despite being proactive, the potential threat of illness was a constant day-to-day worry that kept fathers on their guard. Similarly, another father spoke of trying to limit the risk of cross infection by avoiding contact with other families having a family member with CF to protect his son's health and prevent hospital admissions:
… I suppose the thing is protectiveness that's what [it] comes down to, trying to protect him [son] from cross infection. That's why I always stop myself from



having contact with other [families] with cystic fibrosis (P4).

Fathers spoke of being particularly worried prior to a clinic visit because of fear of receiving “bad news.” For example, one father described the worry associated with thinking about bringing his son into the hospital for follow-up:
… Tuesday's in me head, you know… if they find something… Please God… everything will be alright, it's just like [so] you can be calm (P3).

likely to discuss deteriorating and life-threatening aspects of CF. Avoiding other parents of children with CF was another strategy one father adopted to evade having to talk about CF:
… I suppose talking… with families with cystic fibrosis brings up I suppose the feelings that are down there inside of yourself that probably you don't want to look at… (P4).

Similarly, another father remarked:
I'm quite aware that… it's there every day… you'd always get that lump in your throat every time you think about it but you don't talk about it everyday, don't like to talk about it everyday, its possibly healthy not to talk about it every (pause) less said you know, those kind of things can get you down (P8).

Not knowing what to expect was a source of worry for fathers:
It's a head wrecker like there's something new everyday… diabetes… osteoporosis, there's a whole bunch of things like… [it's a]constant kind of a worry all right… apart from having the disorder there's always something there beating you down… (P1).

These quotations illustrate the uncertainty that the fathers experienced living with a child with CF. Potential complications hovered but were unpredictable. An underlying worry was the ongoing threat of disease deterioration and that this could occur unexpectedly.

The pause in this comment emphasized the tension he experienced as he deliberated whether he should talk about CF or not. Despite not talking about it, however, he was not spared from thinking about it; his opening sentence suggested that it was always on his mind. It may be impossible not to think about CF:
I think about it an awful lot (pause)… it's in your face… Everything about [CF] is there every day from medication to physio so you've no choice only [to] think about it (P1).

Difficulties With Talking About CF
The fathers' accounts indicated that their first experiences of talking about their children with CF, for example, relating the diagnosis to family, were emotionally difficult:
… we were so upset [following the diagnosis] and then we told our families and they were so upset and that upset us more again… (P8).

Five fathers spoke of being surrounded by constant reminders, for example:
… I find it difficult to look at him out of breath… when I look at him playing football… and I find he's out of breath, it kind of stings you know inside (P4).

Furthermore, it was apparent that over time, fathers continued to experience difficulty talking about their children with CF:
… I've no problem talking about CF and I've no… problem talking about [my son] but I have a problem talking about [my son] with CF that gets me down big time… (P1).

This father became visibly upset at this point in the interview. By talking about his son and CF separately, it seemed that he could detach the disease from his son, therefore implying that he could depersonalize CF. However, when CF was placed in the context of his son, it seemed to carry a different meaning for him because of his personal and emotional relationship with his child. The accounts of some fathers indicated that they talked less about CF over time and that they were selective in what they talked about. They were less

This comment highlights how thinking about their children with CF can be an emotionally painful experience for fathers. Despite feeling these emotions, fathers explained that they reacted differently from their wives. Three fathers described their wives as being more emotionally upset than them; fathers described themselves as being more pragmatic than their wives. One father said:
I don't know whether I shut some of it away or not but… when [my son's] not well [my wife] takes it bad and I'd be trying to support her… I'd be more practical about it now, I don't know whether its coldness or a way of dealing with it better but… I don't show the emotion that I should or do men show emotion? You know but [my wife] would react I suppose more like a woman would…but like I would still be as worried (P7).

This statement demonstrates that although fathers may not show their emotions, they can be



equally concerned. Inherent in this quotation is this father's tension with what he considered acceptable behavior for men and women and whether it was right or wrong for him as a man to show his emotions. In contrast to fathers who described themselves as less emotional than their wives, two fathers described becoming “more stressed and upset” (P2) than their wives. One father said:
I think women are stronger than men, well I think [my wife] is stronger than me anyway. I think she's able to deal with the problems it brings up on a day to day basis better than I am (P1).

like that that's just a part of life at the moment… for us it's not a burden (P3).

Two more fathers remarked that they just had to “get on” with it:
You just learn to deal with it like, try and get on with it (P8).

This father went on to emphasize that fathers, as men, are not asked how they manage their children with CF:
People don't ask men, men don't ask men and women don't ask men you might get the very odd situation… nobody like nobody thinks of men. I mean I don't want any sympathy or anything like that but… they just don't you know… (P1).

The terms deal with and get on with convey that fathers learned to face their situation despite the difficulties. Although, initially, fathers spoke of expending energy searching for a cure, one father's comment suggested that he only began living from day to day in a positive way once he stopped looking for a cure:
… in the last few years I've found I became more positive you know, trying to… not live with kind of a cure, just trying to live with it… the bottom line is… none of us know what is going to happen to us tomorrow anyhow (P4).

This father's reflection illustrates that there can be a lack of recognition of the emotional impact on fathers because of their gender and the societal expectations of men. The fathers' difficulties in talking about CF were evident in their body language during the interview, for example, walking around the room, turning away from face-to-face interactions, and gradually sitting further away by the end of the interview.

Two other fathers shared this view and reflected on how their priorities had changed:
None of us might wake up in the morning… that's why we said we don't care what we do or don't do, [we take a] holiday once a year with the two kids (P7). No I never work longer hours, life is too short (P2).

Living From Day to Day
Managing the emotional impact associated with living with CF for most fathers involved living in the present and not looking too far into the future:
… we only live from day to day we never, never plan ahead… that was our philosophy after [my son] was diagnosed… That's the approach we have you know because we cherish every day we have with him (P7).

Spending time together as a family, going on family holidays, and not working long hours were all strategies that these fathers proposed helped them to live from day to day. DISCUSSION This study explored fathers' perspectives on the emotional impact of managing the care of their children with CF. The study addresses a gap in the literature since little previous research on fathers specific to the context of CF has been conducted. The findings have illustrated that fathers are emotionally involved in the care of their children with CF. The fathers' accounts indicated that in managing their children's care, they lived with worries on a daily basis. Similar to fathers of children with other chronic illnesses (Cayse, 1994; Katz & Krulik, 1999; McNeill, 2004), the principal worry identified by fathers concerned their children's physical health. The fathers' concerns were specific to CF, for example, fear of weight loss, fear of exposure to infection, and fear of omission of medications. They described taking a proactive stance to offset threats to their children's health.

The fathers spoke of putting their energies into making the best of the time they had together as a family and not worrying about what could happen. They were keen to give examples of their son's intellectual and physical ability and to point out how well their boys looked. These measures helped minimize the differences between their children and healthy children and allowed fathers to remain positive. Fathers also spoke of how treatment had become part of their way of life, which caused minimal disruption to the family:
… he's just a normal kid… we've got used to the physio, giving him his Creon, his tablets and things



The relevance of a child's chronic illness as a catalyst for increasing fathers' caregiving involvement has previously been highlighted by McNeill (2004). The findings of this study suggest likewise and, in addition, indicate that fathers' active involvement in caregiving prompted them to address their worries and concerns. The fathers worried about immediate threats to their children's health but spoke little of their concerns about their children's future health. Previous researchers have identified fears and worries about future health and lives concerning the emotional demands on fathers of children with chronic illnesses (McNeill, 2004; Sterken, 1996). These studies examined fathers of relatively older children, as compared with fathers of younger children in this study, suggesting that worrying about the future health of children may be less of a priority for fathers of younger children in the early stages of illness management. This is an important finding because it serves to inform health care professionals when supporting fathers that their worries may be focused on immediate rather than on long-term health concerns in the case of younger children in the earlier stages of illness. The fathers were aware of the emotional impact that thinking and talking about their child with CF had on them. Fathers believed that it was best not to talk about CF to avoid the negative emotions that may arise as a result of talking about CF. Sentiments such as “it stings inside” and “a lump in your throat” and their descriptions of constant reminders of CF suggest, however, that they continued to think about CF despite not talking about it. This finding resonates with the perspectives of fathers in the study of McNeill (2004), who adopted a strategy of emotional withdrawal to avoid openly expressing their feelings. A notable feature of some fathers' accounts concerned their beliefs about men displaying emotions of upset and fear. Some accounts indicated beliefs that men are expected to be stronger than women and, therefore, adopt a supportive role in caring for their wives rather than show the depth of their own feelings, especially during difficult times. One father in particular questioned the appropriateness of men showing emotion, despite being equally worried as his wife about caring for his child with CF. These findings raise questions about the influence of gender identity and role on fathers' views on whether to openly communicate the emotional impact that managing the care of a child with CF can have on them. The work of

McGrath and Chesler (2004) with fathers of children with leukemia raised similar questions. The practice implication of the fathers' accounts concerning gendered expression of strength and support is that health care professionals may interpret strong and supportive behaviors as indications of fathers managing well in terms of their own emotional well-being. The consequence of this is that fathers could be isolated from supportive interventions that could help them express their emotions. This isolation was palpable in one father's account, who commented on the failure of people to ask fathers about how they are managing, which he believed was because “nobody thinks of men.” Hiding emotion may have little consequences for fathers in the short term but raises concern about the long-term impact of stress on the fathers' physical and emotional health. There is a need for supportive interventions with fathers as an integral part of the overall services in managing the care of children with CF. Specialist nurses are ideally situated to work with fathers because of their educative and supportive role in facilitating parents to manage the care of their children with CF. Interventions that may be helpful to fathers include scheduling individual consultations with nurses and other health care professionals specialized in CF. Consultations could be scheduled for evenings or weekends because fathers may have difficulty attending daytime consultations because of work commitments. Other considerations include the facilitation of group meetings with fathers, as well as meetings involving father–mother dyads. The potential of the Internet in providing support could also be considered. Actively involving fathers in their children's clinic consultations and acknowledging their contribution to managing the care of their children may also be supportive. An important consideration in developing supportive interventions is that they are viewed as appropriate in terms of being relevant and meaningful to their particular needs. There is a need for further research to examine in depth what fathers consider to be appropriate interventions that could help them. This study is limited to fathers of preschool children. A longitudinal study would provide additional information on the emotional issues that fathers may experience as their children move into different age groups and as their children's care becomes more complex. Only married fathers were interviewed; further research needs to examine



the emotional impact on single fathers, divorced fathers, and stepfathers of children with CF. Furthermore, all children were boys; hence, the findings cannot be assumed to be applicable to fathers of daughters because the gender of a child may influence fathers' emotional experiences. CONCLUSION This article builds on the scant body of knowledge published to date on fathers' perspectives on the emotional impact of caring for their children with CF. Further research is needed to identify what fathers would recommend as helpful to supporting

their emotional needs. Through research, fathers can be given a forum to voice their views and concerns, which, in turn, could be used in clinical practice to develop supportive interventions that are tailored to their needs. ACKNOWLEDGMENT Claire Hayes is thankful to the fathers for taking the time to participate in this study and for sharing their experiences of caring for their children with CF. This study was funded by the Health Research Board, Ireland, through a Research Fellowship awarded to Claire Hayes.

Burnard, P. (1991). A method of analysing interview transcripts in qualitative research. Nurse Education Today, 11, 461−466. Cayse, L. (1994). Fathers of children with cancer: A descriptive study of their stressors and coping strategies. Journal of Pediatric Oncology Nursing, 11, 102−108. Gibson, C. (1995). The process of empowerment in mothers of chronically ill children. Journal of Advanced Nursing, 21, 1201−1210. Hodgkinson, R., & Lester, H. (2002). Stresses and coping of mothers living with a child with cystic fibrosis: Implications for nursing professionals. Journal of Advanced Nursing, 39, 377−383. Hovey, J. K. (2003). The needs of fathers parenting children with chronic conditions. Journal of Pediatric Oncology Nursing, 20, 245−251. Katz, S., & Krulik, T. (1999). Fathers of children with chronic illness: Do they differ from fathers of healthy children? Journal of Family Nursing, 5, 292−315. Koch, T. (1994). Establishing rigour in qualitative research: The decision trail. Journal of Advanced Nursing, 19, 976−986. Littlewood, J. M. (2005). European cystic fibrosis society consensus on standards—A roadmap to “best care”. Journal of Cystic Fibrosis, 4, 1−5. McGrath, P., & Chesler, M. (2004). Fathers' perspectives on the treatment for pediatric haematology: Extending the findings. Issues in Comprehensive Pediatric Nursing, 27, 39−61. McNeill, T. (2004). Fathers' experience of parenting a child with juvenile rheumatoid arthritis. Qualitative Health Research, 14, 526−545. Orenstein, D. M., Winnie, G. B., & Altman, H. (2002). Cystic fibrosis: A 2002 update. Journal of Pediatrics, 140, 156−164. Peck, B., & Lillibridge, J. (2005). Normalization behaviours of rural fathers living with chronically-ill children: An Australian experience. Journal of Child Health Care, 9, 31−45. Sterken, D. (1996). Uncertainty and coping in fathers of children with cancer. Journal of Pediatric Nursing, 13, 81−88. Stewart, M. J., Richie, J. A., McGrath, P., Thompson, D., & Bruce, B. (1994). Mothers of children with chronic conditions: Supportive and stressful interactions with partners and professionals regarding caregiving burdens. Canadian Journal of Nursing Research, 26, 61−81.…...

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