On this scale, a rating o f one or less indicates 'very little warmth or no warmth'; a rating of two is indicative of'some warmth'. A rating o f three denotes 'moderate warmth', whilst a score of more than three is regarded as 'moderately high and high warmth'. The importance o f tone of voice for the rating o f this scale makes it very difficult to provide case examples.
feelings about his/her illness. Most of these parents had great difBculties describing their child as 'a person', and they were unable to mention even one activity that they enjoyed doing with their child. Simon's father expressed a lack o f affective feelings about his 8-year-old son through the interview. When answering the question 'What is the most disturbing aspect o f Simon's illness for you? He replied, "I can't play football with my friends. After work, I have to go home to help my wife with the physiotherapy. I hate it! I really do! I have lost my fiiends because o f him!" Throughout the interview, the father of Simon seemed very detached from his son, showing no evidence o f warmth.
Overall, parents who rated as 'moderate' on warmth scale were definitely sympathetic, understanding and caring about the child. However, there was an absence of evidence regarding the parent's interest in the child as a person and/or no enjoyment o f the child's company was described. Moderate warmth was shown by Olivia's mother who, describing her feelings towards her 6 year old sick daughter and her other children, said, 'I care about her, but I don't feel the same warmth that I feel towards her siblings. I don't love her as much. I care for her. I feel sorry to see her like that. I really hope she gets a transplant. It would be nice to see her enjoying life".
Parents who were rated as 'moderately high or high warmth', clearly showed an interest and enthusiasm for the child's activities and achievements, they were concerned and sympathetic regarding their child's physical condition and gave clear evidence o f enjoyment o f the child's company. The parents o f Alex said, "She is a joy to be with. She's got a special little character, everybody who knows Alex, loves Alex. Once you know her you never forget her. It is her nature, she's got a lovely character. We adore her!. Obviously, she is our child. She is a joy to be with. That's my opinion". Father said, "Not much I can add to that. She's very close to me, she is the apple o f my eye. She's got that little thing that brings us together. I don't know what it is. There is a big strong bond between me and Alex. We both feel very glad to have been her parents. She's given us so much in the time we've had her. We just feel very privileged to have been her parents". The parents o f Karin who was 8 years old, also gave evidence o f high warmth
great!. We really enjoy every minute with her".
Warmth between the parents: Parents who expressed low warmth about their partner found it difficult to talk to each other about the implications o f surgery. They also found it difficult to share feelings with each other. Often they expressed dissatisfaction with the support and availability given by their partner or they denied the need to be comforted by the other. Nearly all cases that were rated between 'none' and 'moderate' on warmth towards their partner also scored on the critical comment scale. In addition, a few o f these parents also rated in the hostile scale. Mrs Roberts, whose 12 year old daughter was awaiting heart-lung transplantation, said:"I get more affection and sympathy from my fiiends. I can talk to them freely. He (her husband) doesn't want to know about my feelings...(she laughs) I can't remember the last time he tried to comfort me". The mother o f Cyril, aged 6 who was undergoing high-risk cardiac surgery, remarked, "We never do things together. We never go out the two o f us. We do not talk to each other. We sit together to watch TV., but we rarely talk. We are two separate people. We have nothing in common. We share nothing".
Couples expressing high warmth towards each other were aware o f each others needs. During the interview, these couples kept eye to eye contact and invited each other to participate in the conversation. Ben's mother remarked, "I am concerned about Ben, but I am also concerned about John (her husband). I know how much he is suffering with Ben's operation... He is my strength (John). He is such a wonderfiil man... He usually knows how I feel, and he is always there for me. He is loving, very loving. I enjoy having him around. I am lucky in that respect".
Changes in Warmth
Overall, there was very little change in parental warmth towards the child between the initial assessment and the follow-up. All parents who showed 'moderately high' or 'high warmth' at T l also showed the same amount of affection at T2. None o f the parents who were rated as expressing 'none', 'little', or 'moderate' warmth towards the child at the initial assessment were rated as showing 'moderately high' or 'high warmth' at the follow-up.
amount o f affection shown between the parents. This is illustrated in the following examples:
Amon's mother said, "We couldn't talk to each other at the time o f the transplant. It was very disappointing. He wasn't there for me. Since then our relationship has changed. Now, when he goes to work I hope he doesn't come back". The mother o f Katty remarked, "He didn't help me. It was the most difiScult time o f my life. Now we are separating". The mother o f Mike said, "When Mike was taken to the theatre I thought I would never see him again. I turned to James (husband) in tears. I needed him to hold me in his arms (she cries)... but he walked away. He left me there. Alone!. Now I feel nothing for him. I would like to forget what happened between us when Mike had his operation, but I can't. I cry every day since,... I often think about dying".
Couples who showed an increase in warmth at the follow-up perceived each other differently after the child's operation. Mrs Gibson said: "At the time o f the transplant, I needed Peter (step-dad) more than anything else. You don't do these things on your own. He was absolutely wonderful!. That experience brought us even closer". Mr Donoban, whose son underwent high-risk cardiac surgery also said, "you cope with the illness and surgery as a pair, not as individuals. We were there for each other, and we became even closer. We are now much more loving to each other. The operation was very upsetting for both o f us, but I have to say that it had a very positive effect on our marriage". The father o f Candy, who was 6 years old and underwent low-risk cardiac surgery, remarked, " Thanks to Candy's operation we have discovered each other. We are in love again". Candy's mother added, "I discovered new aspects o f Dennis (husband). I never thought he could be so loving and caring. We both were feeling very vulnerable and fiightened o f losing her. When Candy was taken to the theatre, the feelings were so strong and painfiil!. I felt completely alone, and unable to cope with it. Then we started to share it. It was like a miracle!. I was not alone anymore. It is difficult to describe the comfort we got from each other. The experience is absolutely wonderful. We had a good relationship before, but now..., I don't know. Even our sexual relationship has changed. We are deeply in love".
A parent’s mere recognition or description o f characteristics o f the patient, however unfavourable, is never in itself sufficient to define a statement as critical, unless a critical tone is present (Leff and Vaughn 1985). The families in this study are characterised by low levels of CC. The majority o f the children were described as very well behaved, very caring and loving; often 'perfect' children.
In families containing a child with CF, the content o f the CC regarding the child was often related to treatment management, as illustrated in the following examples: Ian's mother said, "The only thing he doesn't moan about is his physio. The rest o f his treatment he moans: about the nebulizer, moans about medicines. It can be veiy annoying at times". The mother o f Yvonne remarked, " She is brilliant taking her tablets, but the thing that bothers me most is when she doesn't eat, or doesn't do her physio properly. Then, I really get annoyed!. That really annoys me!... I would like her to take responsibility for the treatment. I can't trust her. I've got to keep checking she's done it. That annoys me. I say: why can't you help yourself and that will help me". Sam's mother also felt upset about the treatment when she said, "Having to remind him about the medications annoys me!. I get worked up because it's a routine you've got to stick to. This skipping and skipping is going to do him no good. Physiotherapy annoys him as well. It is annoying!. The problem is that I like it done here and now, whereas he takes his own time". Johnny's mother also said, " Food is always a struggle. I know he is not hungry, but if he doesn't put on weight he won't have a transplant. He is very reluctant to eat. He drives me mad!".
Some parents, whose children were too ill to attend school and were confined to the home most of the time, expressed some unhappiness about how the child was spending his/her time at home. Coming back to Yvonne's mother again, she said, "Sometimes she'll laze about all day which annoys me. She'll sit in front o f the TV and won't want to do anything". Also, some parents seemed to feel that they were not getting back as much as they were giving to their child. Yvonne's mother said, "If she finds that Fred (husband) and I are having an argument, she will always take his side. Sometimes I get annoyed and think 'you little sod, you!'. I spend all my time
Some parents were critical about disobedient behaviour, untidiness, social life, sibling relationship and how the ill child used the illness to get privileges. This is illustrated in following statements: Samuel's father said about S. "He is lazy and he is cheeky too. That gets me angry". James' mother said, "It is finstrating when he won't take any notice o f the things I say, unless I shout. I don't expect a lot o f help from him, but I do expect him to keep his room tidier than he does. I have to nag him all the time". The mother o f Luig who was undergoing low-risk cardiac surgery, remarked " He goes upstairs and forgets what he is meant to be doing and starts arguing with his brother. Every day!, every morning!. It drives me mad!. I am constantly nagging. I say to myself 'I am not going to shout at him today' and then I am yelling every half an hour!. I don't know how people cope without yelling at their kids... Just lately he is breaking the rules all the time. He used to be quite good but lately he is damaging things, tearing things, he smashed all my pot plants down. I know children are meant to be naughty, but he is especially naughty, just a horror!. It drives me mad!". Marie's mother said about Marie and her relationship to her friends, "She'll invite her friends around, and they'll come and she's so bossy!". Manuel's mother said about his social life," He is not a really good mixer. He is a loner, not an easy child for other children to get on with. He likes adult company unfortunately". The mother o f Allan said, "I think he uses his illness to get results which he couldn't get otherwise. He probably manages to get special treatment within the family by using an inability to walk very far or do things by himself. He doesn't like walking anywhere. So as soon as we go out, he starts to wheeze. He gets his brother very cross because he feels he gets away with things that he is not allowed to get away with. He is 14 and very immature, although he is bright."
The frequency o f critical comments between the parents at the initial assessment was also relatively low. The content o f these statements were directly related to the help offered, or the lack o f it, with the child's treatment and house chores; or to different ways o f dealing with the children and discipline issues. The following examples illustrate these sort o f statements: Melanie's mother said," He leaves all the hard work to me. I could do with a little help from him. He never
have a transplant or not. He says that I am the mother, and it is up to me and Melanie to decide. He is washing his hands of the situation. It's a big decision, it's not fair on me!... He doesn't help with the physiotherapy either. I have to do it with both Melanie and her younger sister. There are two kids with C.F. in the house, to bring money home is not enough. Sometimes I get very annoyed". Mrs Frost whose boy was undergoing low-risk cardiac surgery, remarked about her husband, "He is too soft. Andy needs a bit o f discipline. He never says 'no' to him. Even alter I have said 'no', he contradicts me and says 'yes'. Andy has learnt the game and he always goes to his dad. He knows he is getting his way. I go mad at him (husband) sometimes. We are always arguing about it. He is damaging Andy".
Changes in Critical Comments
Parents were more critical o f the child at the follow-up. There are several alternative explanations for this. It could be that because the child was healthier, the parents were less protective and felt less guilty about expressing unfavourable comment about the ill child. However, it could also be argued that the increase in the number o f parents' critical comments was related to the parents' difficulties adjusting to the rapid changes in their child's behaviour and attitudes to life after successful surgery. The content o f those critical comments was as follow: the mother o f Anthony said, "Since the transplant, Anthony seems to play up. He was not like that before. It's infuriating". The mother of Steven also said, " He feels good now and he is getting very cheeky. Obviously, he feels a lot o f aggression and before he didn't have the energy to let it out. I know he's got every right to be crabby, but it cracks me up. Just the tone o f his voice, - no respect there. He angers me, he really does!. Neil's mother said, "It is finstrating having to push him when you know he's got more ability and energy than he is using".
On the whole, following the child's surgery, the number o f critical comments between the parents also increased. This increase of CC was directly related to dissatisfaction with the partner's support and ability to give comfort at the time o f surgery. This dissatisfaction has already been