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Living with cystic fibrosis: An exploration of the impact of beliefs on emotional coping and motivation to adhere to treatment regimes among parents of children with cystic fibrosis in Scotland
Brian Williams, Joanne Coyle, Jon Dowell and Somnath Mukhopadhyay
Abstract
Objective: To explore the impact of beliefs on emotional coping and motivation to implement treatment regimes among parents of children with cystic fibrosis in Scotland, with a view to enabling health professionals support parents to cope emotionally and practically manage (with their children) arduous treatment regimes.
Methods: The study used a qualitative design. Thirty-two children were purposively sampled from a cohort of over 100 children attending CF clinics in 2 regions of Scotland. The children and their parents/guardians were interviewed in-depth. The interview transcripts were analysed using Framework analysis facilitated by Nvivo software.
Results: The results showed a complex relationship between beliefs, emotional coping and motivation to implement regimes. Beliefs about maintaining family values and identity, promoting 'normalness', 'acceptance', and having social support influenced emotional well-being and motivated parents to implement regimes. Beliefs about 'healthiness' promoted emotional well-being of parents and children but often undermined the child's motivation to fully implement the regime. Beliefs about illness, hospitalization, and responsibility challenged emotional coping, but strengthened parental resolve to carry out the regime. Beliefs about value conflicts and non-acceptance undermined both emotional coping and adherence.
Conclusions: Health professionals may be able to increase parents' motivation to implement treatment regimes by: illustrating how the treatment regime can support their efforts to maintain family values, promote 'normalness' and be concordant with their sense of self-identity; exploring with parents ways of developing a social support network; assisting parents in 'accepting' CF.
Introduction
Parents of children with chronic disease are often instructed to adhere to arduous medical and behavioral regimes. Consequently, they must cope with taxing circumstances, solve practical and emotional problems, and minimize, or tolerate stress in the family (Chan and DeBruyne, 2000, Eddy et al., 1998, Reddington et al., 2000). A study of mothers of children with cystic fibrosis identified three ways in which parents cope with the disease and its treatment: problem focused, emotion focused and appraisal focused coping (Hodgkinson and Lester, 2002). Problem focused coping strategies entail dealing practically with the problem: gathering information, learning new skills, seeking support and rearranging their lives around the disease. Emotion focused coping involves preventing, avoiding or controlling emotional stress and modifying thought. Appraisal focused coping is about reconstructing meaning of the disease to one that is more acceptable. Parents can combine these coping strategies, or move from one to another over the career of the child's illness.
Parents' actual and perceived ability to cope with their child's illness may be influenced by number of internal and external factors (Conner and Sparks, 1998, Taal et al., 1993). Internal issues relate to the parent themselves and may include their fears and anxieties, resilience, knowledge of the illness (cause, treatment, likely consequences), and general parenting skills. External factors are those that lie beyond the individual and may include social and family support, the demands of siblings, financial resources and the availability of support services. Both intrinsic and extrinsic factors are likely to influence parents' ability to successfully manage their child's everyday illness demands. For example, interventions that demand everyday parental involvement and action such as exercise, diet, physiotherapy, wound care and, self-administered psychological therapies (Glasman et al., 2004) require both knowledge and skill, as well as resources. They are often time-consuming, uncomfortable, visible to others, and frequently depend on facilities being available to carry them out. Thus contextual factors can often act as barriers to parents fully managing the illness and successfully implementing treatment regimes.
In addition the beliefs that parents hold about their child's health, illness and treatment are critical in determining parental behavior. Studies of parents of children with serious chronic illness have found that parents' beliefs about the benefits and effectiveness of treatment, the costs or difficulties involved, and their own capacity to act, are key factors in adherence and non-adherence to therapeutic regimes (McQuaid et al., 2003, De Civita and Dobkin, 2005). For example, a recent investigation of adherence among children with HIV found that parents were more motivated to implement the regime because they believed the benefits of the treatment outweighed the costs, and they believed in their own capacity to carry out the regime (Hammami et al., 2004). These parents were also found to retain medical information to greater extent than less adherent parents and had developed greater problem-solving capacities, that is, ways to deal with practical complications of the medication. The study found that parents who were located at less advanced stages of the coping process and had less resourceful beliefs about themselves, the illness and the treatment were less adherent. However, parents who were more motivated to implement the regime, had also developed problem solving skills as a result of the more resourceful beliefs held. These findings therefore suggested a strong connection between parental beliefs, emotional coping and the process of establishing good adherence.
There remains an important gap in research. We have yet to fully understand how parental beliefs interact with coping and motivation to implement treatment regimes, and what health and social care professionals can do to identify and sustain enabling beliefs. This paper draws on findings from a wider study (Williams et al., 2007b, Williams et al., 2007a) and explores beliefs that support emotional and appraisal focused coping and motivate parents to implement treatment regimes for their children with CF. It also examines beliefs that may have a negative impact on coping. Cystic fibrosis (CF) is used as a case study because it is an important clinical area, which involves parents carrying out arduous treatment regimes which are tiring, time-consuming and intrusive (Foster et al., 2001, Chappell and Williams, 2002). Caring for a child with CF is stressful affecting the health of the carer, and relations between parents, siblings and the affected child (Eiser, 1990, Hodgkinson and Lester, 2002).
Methods
Participants
Tayside Medical Ethics Committee gave their approval for this study. Specialist CF nurses, physiotherapists and consultants were asked to identify children and young people aged between 7 to 17 years who had a diagnosis of cystic fibrosis and were receiving physiotherapy. Thirty-two children were purposively sampled from a cohort of over 100 children attending CF clinics in 2 regions of Scotland. Children were selected to reflect differing ages, chronic respiratory impairment (mild/moderate/severe long-term reduction in forced expiratory volume in one second (FEV1) over one year) and family structure. Characteristics of the children and caregivers are given in tables 1 and 2 respectively. All children and parents gave informed written consent to participate in the research.
Procedure
The researcher introduced the study to parents at outpatient clinics. Parents were given information sheets, which described the study in detail. They were telephoned two or three days later to see if they had any questions and whether they wished to take part. Three key points were emphasised to parents and children. Firstly, participation was entirely voluntary and non-participation would in no way affect the quality of their health care. Secondly, the interviews were completely confidential and no information would be passed on to their clinicians. Thirdly, they could decide at any point to either temporarily cease the interview and recommence it at a time and place convenient for them, or they could completely cease involvement in the study.
Interviews
The majority of parents (31) were interviewed in their homes. Three were interviewed in hospital because their child was receiving in-patient care. Interviews lasted between 45 minutes and 3 hours and were audio-recorded. The interviews were conducted using a non-standardised topic guide and open-ended questioning approach. The topic guide covered the meaning and interpretation of diagnosis, knowledge of CF (its causes, consequences and treatment), beliefs about symptoms and treatment and treatment effectiveness, role definition and responsibility for treatment regimes, problem/issues around adherence, and coping strategies. However, new important questions identified during interim data analysis were included in subsequent interviews. Recruitment to the study ceased when no further information was gained from the interviews (theoretical saturation)(Strauss and Corbin, 1990).
Analysis
The audio recordings were transcribed. Framework analysis, together with a qualitative software analysis package (N-VIVO), was used to analyze the data (Ritchie and Spencer, 1994). The framework approach is developed from grounded theory and seeks to build theory and derive interpretations, which are thoroughly grounded in the data. Through the procedure outlined in Box 1 the data are coded, indexed and ordered into analytic categories and eventually overarching themes. All names have been replaced with pseudonyms.
Trustworthiness of qualitative data
Regular analysis meetings were held to check the interpretation of key texts, codes and categories, and new lines of inquiry. Interview transcripts and case notes were examined to assess the accuracy of key events and practices reported by parents. Researchers looked for evidence disconfirming developing theory to ensure transcripts were not analyzed selectively, and checked that the totality of the data set was consistent with reported findings. Finally, the team sought external validation of the coding framework. Three other researchers assigned established codes to 10 transcripts in order to assess agreement between coders (Mays and Pope, 1996).
Results
The results showed a complex relationship between beliefs, coping and motivation to implement regimes. While some beliefs facilitated both coping and determination to implement the regime, others supported coping but undermined willingness to adhere, others undermined coping but supported adherence and yet others hindered both parents' capacity to cope and their perceived ability to implement regimes.
Beliefs about maintaining family values and identity, promoting 'normalness,' 'acceptance,' and having social support supported emotional well-being and motivated parents to implement regimes. Beliefs about 'healthiness' while promoting emotional well-being of parents and children often undermined the child's motivation to fully implement the regime. Beliefs about illness, hospitalization, and responsibility challenged emotional coping, but strengthened parental resolve to carry out the regime. Beliefs about value conflicts and non-acceptance undermined both emotional coping and adherence. These are explored in turn below.
Value maintenance and conflict
Maintaining family values was an important source of emotional coping for parents. Parents were especially encouraged to adhere to the regime if they believed that adherence supported a strong family value. For example, some parents believed that nurturing and supporting family members was the most important thing about having a family. To these parents CF strengthened this bonding and nurturing process because practically administering a regime meant they could focus even more of their attention on the child (or children) with CF. This was believed to bring the family closer and therefore provided emotional comfort for the parent.
Em, well, it's probably brought us a lot closer, really, as a family unit because with all the girls being affected, because life revolves, it really revolves around them. I mean that's what marriage and having a family is all about anyway. Martha
Conversely, where the disease or treatment regimes were perceived to undermine a strongly held parental value then both emotional coping and adherence could be challenged. For example, some parents felt that an important element of family life was to nurture and treat all siblings equally. However, the medical requirements of CF and the resultant inequity of attention given to siblings with CF undermined this family value. These parents felt that the treatment regime could psychologically damage other siblings as they could feel excluded from parents' attention. This internal value conflict undermined both parents' emotional coping and their motivation to implement the regime.
Jonathan you know is the centre of everything, you know, centre of attraction. His grandparents always do things with him, which is great they're really good and buy him things. They do with Jack too, he's got a wee brother Jack, but sometimes well I think he thinks he's left out. Julie
Identity
Beliefs about self and family-identity had an important influence on parents' emotional coping and motivation to implement the regime. For example, parents who believed that they were a 'down to earth' practical family felt that adhering to medical regimes was another part of this practical family identity and approach to life.
Well on the whole, I mean we're a pretty down to earth family, I haven't got time to wrap her up in cotton wool, she has to run round with the rest of us. ... on a day to day basis it doesn't, we rule it, it does not rule us. So, I mean even when she became diabetic, it was a case of ok, this is what we get on with now, you know, and it's just become part and parcel of the day really. Marion
Parents' view of their own innate selves or self-identity was seen to manifest itself in their commitment and approach to practically managing the regime. Consequently, their practical coping helped both to positively define who they were and also give them confidence that they could manage the condition.
I don't know, ach I suppose just my personality, em, the type of person that I am. I suppose I'm just fortunate that you know, he maybe takes his personality from me as well you know, I mean I'm just a coper, em, a hard worker, em, I don't let, I don't lie down to things. Judith.
Many parents also believed that the child's identity (e.g. being determined, uncomplaining, stoic and so on) was important in enabling the child to cope with CF and participate in the activities they enjoyed. Many parents commented on the young person not letting the symptoms of CF undermine their confidence and ability to do the things they wanted to do. However, some parents believed that the presence of symptoms were evidence of their failure as a parent. This undermined their emotional coping and they felt less able and confident about managing the medical regime.
His biggest problem is his weight. You can see he is quite small, and it's a bit of a worry. They are always concerned about that... when I've took him to the clinic he had lost weight or only put on a little. I hate that, I hate finding out that. I kinda knew, I could see it myself, and I told them. But I felt really awful, like I was a bad mother, why wasn't my child growing? What was I doing wrong, you know? Julie
'Normalness'
Most parents believed that participating in 'normal' and regular childhood social activities helped promote the child's psychological well-being. Many stressed that having CF did not prevent the child from doing many physical and social activities considered 'normal' in children such as sports, sleepovers, and school trips. However, adherence played a complex role in the promotion of 'normalness'. On the one hand, adhering to the medical regime was believed to keep the child healthy and alleviate symptoms so that they could live a normal life. On the other, the regime had to be contained and adapted so that it did not impinge or curtail these 'normal' activities.
Well, I mean at odd times in the day, it could be that she's on the way to school, sitting in the back of the car and I'll make her do some huffs and puffs and cough. We could do that 30 times a day, it just depends. If I hear her sounding a little croaky. We do actual physio in the lounge. About 20 minutes half an hour it just depends. Depends on the mood. It depends on how the house is running at the time you know, and it's not necessarily at the same time every day either. Patricia
Parents believed that this flexible approach to the treatment regime helped to promote the emotional well-being of other family members. By not focusing exclusively on CF and treatment, and performing the regime regimentally at the same times every day, other family members were encouraged not to dwell on the illness.
I mean I just treat her as I treat the boys and my husband I'm not too soft on any of them to be honest but em, I think that pays off too because they haven't got time to dwell on it. It helps them cope, you know, with it emotionally. She still has to go to bed at a normal time. We're just a normal family I suppose, there's nothing specific. I just don't make anything regimental. Elizabeth
Acceptance
Parents often reconstructed the meaning of CF and its' treatment in a way that was more acceptable to them. This enabled them to say they had 'accepted CF'. To most parents 'accepting CF' meant accepting the fact they had to adjust their life and routines to accommodate the treatment regime. This coping strategy orientated them to act, and thus do something to deal with the situation; this 'doing' therefore facilitated emotional coping.
I think if you hadn't accepted it, I think you would go through life, em, probably not even sticking to the regime. I've accepted it and adjusted my life to accommodate it. I think if I wasn't accepting it, I think I would be probably just shutting it off and not following the sort of, in inverted commas, rules and regulations. Martha
Many parents also believed that their child was influenced by their own perception of CF. Therefore, it was important for parents to have a positive outlook to enhance their child's emotional well-being and ability to cope.
He doesn't see it as something negative. I'm so aware of how we perceive it that they take on board that. That's why I've always tried to be very positive about it all with them around, and we don't talk negatively about it in their presence. June
However, to a minority of parents 'accepting' CF held a completely different meaning, a meaning which undermined both emotional coping and adherence. 'Accepting CF' meant having to accept the direst consequences of the disease, the possibility their children would die young. Such a meaning undermined emotional coping and adherence by implying that their actions would not prevent the inevitable. Thus it was especially difficult for these parents to carry out the regime and emotionally cope during periods of illness as these were visible reminders of the seriousness of the condition.
I definitely find it difficult to deal with sometimes. The whole thing. The treatment, the physiotherapy. You see I haven't accepted it. I can't I can never accept it. I won't accept he's going to die young. It's okay when he's well, you just get on. But I hate it, I dread it when he's ill, when he's in hospital, when he's got an infection. It's really frightening. Julie
Social Support
Beliefs about social support had a strong influence on emotional coping. Parents who believed that they had a strong supportive social network derived emotional comfort from that and felt more able to deal practically with the regime and any medical crises. This belief was commonly based on previous experience of receiving help and support from siblings and in-laws during a medical crisis.
My extended family is really supportive. They've all been there through every crisis, probably made us closer. They're just there. I mean the girls go into hospital; they're there if you need them. They're there to see to other problems. I mean they'll visit, they'll listen to you, you know, em. Just to know there's somebody there to pick up the pieces sometimes you know. You can rely on any of them... Martha
Parents who had more than one child with CF believed that their children's common experiences provided (or would provide in the future) social and emotional support for each other and would make it easier for the children to cope with CF in the long term.
And if anything, you don't want any of them to have it but it's the one thing that makes it easier that they all have it. It makes them, you know, they're not why me and not him? Instead it's, we're all brothers in it together so I think that in the long term will make it easier for them. June
Other parents, however, felt that they had little social support and no one they could talk to and discharge their emotions. They felt isolated and alone in trying to cope with a rare and arduous medical condition.
Maybe counseling. You don't get any counseling... . I still worry, what if he gets another infection, it's just some one to talk to. Cause you know here's no one really. Well, you have the CF nurse who's really nice and she would come and drop everything if he's ill. But it's not like talking to parents or someone you can just share your worries. ..It helps when you see other people that you are not the only one. You see I feel isolated. I feel you just need support. I really feel they should offer you some support, cause sometimes I see things too black. I think talking would help. Julie
Health and Illness
While the belief that the child was currently 'healthy' supported parents' emotional coping, it often undermined the child's motivation to adhere to the regime. Parents believed their child was 'healthy' if they had not observed symptoms (e.g. coughing), the child was active and energetic (behaviour), had not been admitted to hospital recently, and if the child's medical problems were perceived as being less serious than other children with CF. Parents believed that treatment was responsible for keeping the child infection free and preventing deterioration. Yet, its success (removal of overt symptoms) masked the fact that the child had a chronic disease and that they needed to perform a regular treatment regime. Because the child associated treatment with being ill they did not immediately see the need for treatment and so parents found it difficult to get children to adhere to the regime.
There's times when he's not coughing so, and we've missed it at night. We're all guilty for forgetting because he's kept so well. You know for that 10 years, we're really all having to remember ourselves that's why I feel it would be better if we were more in control. I think, he thinks he doesn't need it if he's not coughing. Janice.
Conversely while parents' perception of declining health undermined their emotional coping it facilitated strict adherence to the regime. Decreases in objective lung function and hospitalisation were taken as indicators of deterioration. Parents' emotional coping was challenged by the belief that any deterioration was the first step in a progressive decline. They believed that treatment regime would prevent further deterioration and alleviate symptoms. Therefore, parents believed that strict adherence was essential if the child had an infection or coughed frequently or excessively. In turn, increased adherence became the means by which emotion focussed coping was also carried out. That is, they urged children to adhere not only to deal practically with the symptoms of the disease but also to alleviate their anxiety.
Hospitalization
Parents' beliefs and feelings about hospitalization also influenced their motivation to adhere to the regime. The child being admitted to hospital was stressful for parents and challenged their emotional coping in 3 ways. Firstly, parents' believed that in-patient care meant that the child's health had deteriorated, that the CF was less controllable and that it marked the beginning of a gradual progressive decline.
You get down very easily, you know just the fact that he's in and why he's in and you know, is this another step down the lane that you don't want to go. Beth
Secondly, some parents were concerned that nursing staff were poorly trained in the specialist area of CF. This undermined their confidence in personnel to treat their children. Therefore parents believed they had to be vigilant and monitor the actions of the nurses. In-patient care was thus often experienced as stressful and exhausting for the parent.
They (nurses) kept getting things mixed up. You know Robbie MacKintyre, he's about Jonathan's age. They are quite similar, and this really annoys me they keep getting them mixed up. I caught them trying to give Jonathan, Robbie's medicines. And they kept doing it all the time. It was just so exhausting. I worry about the students too, you know student nurses who don't know anything about it. I mean they don't know anything about CF. Julie
Thirdly, parents were often in hospital for hours with little to distract them from the disease and its' consequences. They were constantly reminded of illness, disease and death by IV and monitoring equipment, the uniforms of doctors and nurses and the hospital surroundings. This sickness focus and lack of distraction depleted their emotional resources.
I think more than anything you are just focusing on the illness and what the future might hold and things like that, for most of the day I'm in hospital, em, and I'm there till you know eight o'clock at night, and you're surrounded by sick people, by nurses, you're looking at your child who is obviously on IVs or something because they've got a lung infection and you're feeling very, very low. It really gets you down. Margaret.
Control and Responsibility
All parents believed that as their child got older they would be more capable of administering the regime. However, although many parents believed their adolescent children were capable of performing the regime some parents did not trust the child to do it as recommended. Having to remind the child to do breathing exercises or take medication and the appearance of symptoms such as coughing were evidence that the child was not performing the regime properly, and was not yet ready to assume full responsibility. While, this undermined parents' ability to cope emotionally with the illness, it also motivated parents to ensure the regime was carried out as recommended.
You have to remind him to do that, and sometimes I don't really trust him. I'll say to him "have you done your breathing?" and he'll say "no, but I'll do it in the shower," "but are you?" Sometimes I feel it would be better if we took control of the physio whereas the physios are giving more control to Simon. If he is, if he's fine the way he is the now, it's not a problem, 'cos I know, you can hear when he's coughing, you think to yourself, he's not been doing his breathing. Francis
Other parents felt that they were unable to get the young person to fully adhere to the regime and needed the help of health professionals. They believed that health professionals were better able to get the child to implement the treatment regime.
Interviewer: Do you think there's anything that could help Bernadette or other children do their physiotherapy more regularly?
Joyce: Yeh, get a physiotherapist to come in... because I think a lot of the times, em, young children and adolescents will kind of do it better for physiotherapists at the hospital than they would do it at home, because at home they tend to say oh I'm needing a pee, I'm needing a drink, oh wait a minute til I watch this, oh I'm needing this. Whereas in the hospital they kind of have to lie there and do it, so if they had more physiotherapists to come out, I think it would be less children in the hospital... they do it better for somebody else than they would for the parents. Joyce
Some parents wanted to retain parental responsibility for the regime because they still wanted to care for the child and for the child to need them and depend on them. So to parents retaining control of the regime facilitated emotional coping and adherence to the regime.
Discussion
Parents felt it was their responsibility to maintain the emotional well-being of the child and other family members, as well as to medically manage the disease. We found that beliefs about maintaining family values and identity, promoting 'normalness', accepting CF, and having social support both safeguarded emotional well-being and motivated them to adhere to regimes.
Research suggests that parents are right to be concerned about family relations, and maintaining cohesiveness. In CF there is evidence that the frequency and intensity of treatment regimes can cause disruption to family functioning (Thompson, 1992). Studies of other chronic conditions have also found parental conflict over child care responsibilities, and maternal anxiety about the behaviour and socialization of 'healthy' siblings (Pursell, 1994, Quitter et al., 1998). Furthermore, these stressors have been found to be associated with problems in adherence with treatment (Eddy, 1998). In a study of 41 mothers of children with CF, problems in parent-child interaction, stress in the parenting role and a sense of disengagement in family interactions were related to problems in adherence with chest physiotherapy. The authors concluded that in family environments characterized as less cohesive levels of adherence were dramatically reduced (Eddy, 1998). Such findings have led some researchers to argue that in many cases structured intervention increases family disruption, which increases stress, which in turn can lower adherence (Bernard and Cohen, 2000).
Our findings suggest that supporting parents' emotion focused and appraisal focused coping and their attempts to promote cohesiveness may also encourage adherent behaviors. Maintaining family values was an important way of promoting emotional well-being in family members. Parents felt better able to manage the regime if they believed that CF did not dramatically threaten what was important to them as a family or if adhering to the regime actually supported their family values. Therefore, value maintenance was part of an appraisal focused coping strategy. That is, the meaning of CF was reconstructed in a way that was positive to the identity of the 'family'.
Parents have attempted to achieve cohesiveness in this study by striving for 'normalness' (Wise, 2002, Atkin and Waqar, 2000). Parents believed that promoting 'normalcy' helped to protect and promote the child's emotional coping, and maintained family cohesiveness. This in turn enabled the child to deal practically with the illness. 'Normalness' was about minimizing problems and disruptions caused to the household as a result of the disease and treatment, and enabling the child to participate in what were perceived as normal and regular childhood social activities. Hodgkinson and Lester reported similar findings in a study of 17 mothers of children with CF. They found that mothers employed a strategy they termed "habituation" which included getting used to problems and normalizing them so that they became part of everyday life (Hodgkinson and Lester, 2002). Studies of children with moderate/severe asthma have also found that parents attempt to maintain 'normalcy' through not defining asthma as a major problem, and regarding the symptoms as tolerable and the impact on their lives as minimal (Prout et al., 1999, Gabe et al., 2002). Similarly in this study the majority of parents did not regard CF as preventing their children from engaging 'normal' childhood activities. Parents attempted to maintain a delicate balance between medically managing the disease (and symptoms) so that the child could sustain 'normalcy' whilst simultaneously containing the regime so that it did not impinge on all the social activities that made life normal.
Parents felt that being positive and optimistic about CF and the child's participation in social activities would give the child a sense of confidence and motivate the child to practically manage their condition and maintain their health. Research among adults with CF frequently show their desire to maintain a positive outlook towards CF (Lowton and Gabe, 2003). In a study of 31 adults with CF Lowton and Gabe found that their participants felt they were emotionally stronger and that CF had gave meaning to their lives as a result of their positive orientation towards the disease. Furthermore, other research has shown that adult patients displaying a positive outlook, such as being optimistic and hopeful, were more likely to adhere fully to regimes than those with less positive perspectives (Abbott et al., 2001). These findings suggest that self-esteem is an important factor in adherence. Indeed, in a study of 50 children Ricker et al 1998 found that children with higher levels of self-esteem were more likely to adhere to their prescribed regimen (Ricker et al., 1998). The authors suggest that self-esteem is linked to self-efficacy and self-competence. That is, children with higher levels of self-competence may in general have a more positive outlook and self-esteem and so might be more predisposed to implementing treatment regimes (Ricker et al., 1998). On the other hand, low self-esteem may be associated with psychological maladjustment which may further undermine adherence.
Accepting CF meant different things to different parents. Accepting the need to adapt to a medical regime was a meaning which was acceptable to the majority of parents and it encouraged them to adhere. This in turn provided some measure of emotional comfort in that they were doing something to contain the disease. However, when 'accepting CF' meant having to accept the possible consequences of disease such as disability or premature death every aspect of the regime became a reminder of their worst nightmare. In this context accepting CF became emotionally disabling and discouraged adherence. Health professionals may therefore enable parents to derive emotional and medical benefits from 'accepting CF' by changing its' meaning from 'accepting death and disability' towards accepting changed routines and lifestyle.
Many parents believed that social support was important to their emotional coping. A strong support network was seen to function in two ways. On a day to day basis having social support meant having someone they could talk to when they felt low. It also meant having a 'safety net' that they could rely on in a crisis for both emotional and practical help. Parents who thought they had little social support felt isolated and wanted support from others to help them change the way they thought and felt about the illness. Studies of social support often report that people's perceptions of lack of social support is associated with negative affect and depressive symptoms (Karademas, 2006, Ferreira and Sherman, 2006). A study of patients with HIV found that the perception of a strong social support network was associated with positive emotions and greater spirituality which in turn was associated with self-efficacy and motivation to adhere to therapy (Simoni et al., 2006).
Beliefs about illness, hospitalization, and control also served to undermine emotional coping. To parents, an increase in symptoms, decrease in objective measure of lung function and hospitalization were all evidence of deterioration and possibly a progressive decline. They thus challenged parents' emotional coping. When children were in hospital parents believed their role was to be vigilant about the content of care, such as monitoring medicines administered. These findings support other studies, which have found that parents tend to become lay experts in the medical management of their child's chronic illness over a period of time (Lowton, 2002, Lowton and Gabe, 2003). However, research also shows that parents can feel increasingly excluded and 'sidelined' from playing a role in their offspring's care as the child grows older (Lowton and Gabe, 2003). Our study suggests that health professionals may be able to assist parents in playing the role of 'lay expert' and later a 'supportive expert'. They can do this firstly, by clarifying what 'objective' (such as Forced Expiratory Volume in 1 second FEV1 or peak flow) scores mean in terms of the child's health status. Secondly, by explaining what symptoms parents should be seeking medical attention for, and when to seek advice about the child's behaviour. Thirdly, indicating the level of specialist expertise parents should expect on (general) pediatric wards and where to seek specialist assistance if they have any doubts about medical expertise.
Conflicts about responsibility and control over the treatment regime were experienced as particularly stressful for parents. Although most parents of older children believed that their child was capable of administering the regime they did not always believe that they were performing it as recommended. Research elsewhere supports this study's findings that in these situations parents may adopt various strategies to promote adherence, such as encouragement, insistence, persuasion and offering to do chest physiotherapy (Foster et al., 2001). However, Foster states that parents often found these strategies may be less effective as children grow older. Our findings suggest that the child's beliefs may actually be undermining parents' attempts to promote adherence.
In this study the key problem of child non-adherence from parents' perspectives centered on the child's beliefs about prevention, health and illness. That is, children equated treatment with illness and infection, and not with health and well-being (prevention). Indeed, research on pediatric adherence in general suggests that both children and parents often selectively choose to perform part of the treatment regime that provides immediate or more visible benefit, than those aimed at more long term preventive benefits (De Civita and Dobkin, 2004). Therefore, health professionals may be able to assist parents by changing the meaning of 'treatment' and 'medicine' for the child, enabling the child to associate these with health and well-being and not solely illness and infection.
Conclusion
The findings of this study suggest health professionals can support parents attempts to cope emotionally and to adhere to medical regimes by illustrating how the treatment regime can support parents' efforts to maintain family values, promote 'normalness' and is concordant with their sense identity. Health professionals can explore with parents ways of developing a social support network and they can enable parents 'accept' CF by changing its meaning to the benign acceptance of a treatment regime, rather than a life-taking serious chronic illness. Health professionals can also educate parents about the meaning of 'objective measures', hospital admission and symptoms, in a way that moves their internal images away from notion of a 'progressive decline'.
Box 1
Framework analysis
Framework analysis involves:
Five key stages: familiarization, identifying a thematic framework, indexing, charting and mapping and interpretation.
1. Familiarization: refers to the process of becoming familiar with the range and diversity of the data. The first 10 transcripts were read and recurrent themes highlighted, which generated a multitude of descriptive codes.
2. Identifying a thematic framework: Once the material had been reviewed, the researcher returned to the research notes, and identified key issues, concepts and themes with which to reference the data. An initial rough index was developed and applied 10 transcripts and further refined.
3. This framework (index) was then systematically applied to the entire data set in its textual form using a qualitative software analysis package (N-VIVO) (Richards, 1999).
4. Charting: The researchers then attempted to build up a picture of the data as a whole, by considering the range of attitudes and experience for each theme or issue. Data was lifted from their original context and rearranged according to their thematic reference.
5. Mapping/interpretation: Once the data had been sifted and charted according to core themes, the researchers attempted to pull together key characteristics of the data, and to map and interpret the data set as a whole.
Table 1
Characteristics of children (n=32)
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Number
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(%)
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Sex
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|
|
|
Male
|
14
|
(44)
|
|
Female
|
18
|
(56)
|
|
Age
|
|
|
|
7-9
|
12
|
(37.5)
|
|
10-13
|
8
|
(25)
|
|
14-18
|
12
|
(37.5)
|
|
Severity of respiratory disease
|
|
|
|
FEV1 70% and above(mild)
|
16
|
(50)
|
|
FEV1 51-69% (moderate)
|
9
|
(28)
|
|
FEV1 20-50% (severe)
|
8
|
(22)
|
|
