INTERNATIONAL PEDIATRIC COLUMN Column Editor: Bonnie Holaday, DNS, RN, FAAN

A Qualitative Study on the Experiences of Mothers Caring for Their Children With Thalassemia in Athens, Greece Despina Sapountzi-Krepia, BSc, MSc, PhD, RN, RHV Zoe Roupa, BSc, PhD, RN, RHV, MD Maritsa Gourni, BSc, PhD, RN, MD Foteini Mastorakou, BSc, RHV Efthimia Vojiatzi, BSc, RHV Aikaterini Kouyioumtzi, BSc, RHV Sharon Van Shell, EdD, RN

This qualitative study investigated the caregiving experiences of mothers of children with thalassemia. Using a semistructured questionnaire, the researchers interviewed a convenient sample of 19 mothers who have children with thalassemia. A considerable failure to provide information regarding carrier testing prior to marriage or genetic screening for thalassemia during early pregnancy at the time of the participants’ pregnancies was noted. Emotional distress, fear of death, and difficulties in dealing with feelings were some of the mothers’ concerns. Although they reported that support was provided, approximately half of the subjects wished that support be offered on a more regular basis. Furthermore, most of the mothers stressed that, owing to the tremendous shortage of nursing staff, support services provided by nurses are difficult to obtain. n 2006 Elsevier Inc. All rights reserved.

HALASSEMIA IS THE most common hereditary single-gene disorder in the world; people of Mediterranean descent and those from the Middle East and certain parts of South East Asia are the most likely to carry thalassemia. Nevertheless, as a result of population migration

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From the Nursing Department, Higher Technological Educational Institute of Thessaloniki, Greece, Nursing Department, Higher Technological Educational Institute of Larissa, Greece, Nursing Department, Higher Technological Educational Institute of Athens, Greece, Health Visiting Department, Higher Technological Educational Institute of Athens, Greece, and College of Nursing, Texas Women University, Dallas. Address correspondence and reprint requests to Despina Sapountzi-Krepia, BSc, MSc, PhD, RN, RHV, 3-5 Elaion Street, Kifissia, Athens 145 64, Greece. E-mail: [email protected] 0882-5963/$ - see front matter n 2006 Elsevier Inc. All rights reserved. doi:10.1016/j.pedn.2005.06.017

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and mixing, at least 8% of the global population will be carriers of hemoglobin disorders in the 21st century (WHO, 1994). Until recently, thalassemia was considered to be a fatal disease and patients did not usually reach adulthood; however, recent advances in treatment have now increased the life expectancy of patients with thalassemia (Bush, Mandel, & Giardina, 1998; Pearson, Guiliotis, Rink, & Wells, 1987). Thalassemia results in frequent hospitalization of patients because its management requires lifelong regular blood transfusions, together with iron chelation therapy (Ward et al., 2002). Families of patients with thalassemia must learn to deal with frequent hospital visits, resulting in a psychosocial burden (Louthrenoo,Sittipreechacharn, Thanarattanakorn, & Sanguansermsri, 2002; Politis, 1998). The impact of thalassemia on families has been studied extensively in the United States and

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Western Europe; although some earlier studies on the topic exist in Greek thalassemia literature, the voice of mothers caring for a child with thalassemia is not heard, despite its great value for enhancing nursing practice. Thus, our researchers drew up a qualitative design with semistructured interviews aiming to capture the caregiving experiences of mothers of children diagnosed with thalassemia major.

the course of the last decade, following the political changes in the Balkans and in the former Union of Soviet Socialist Republics, a great wave of immigrants flooded most European Union countries, and Greece is now facing a new reality — that is, the need for the prevention of thalassemia in immigrants. A new program targeting this population now needs to be introduced (Manitsa, Theodoridou, Stamna, & Alemayehou, 2002).

Impact of Thalassemia on Families LITERATURE REVIEW

Thalassemia in Greece In Greece, thalassemia represents a major public health problem as there is an 8% incidence rate among the Greek population in terms of aor h-globin gene carriers (Fessas, 1987; Loutradi-Angnostou, 2001, p. 16). Nevertheless, since 1974, a national screening program aimed at reducing affected births has been offered to interested couples and pregnant women, resulting in a decrease of thalassemia births in Greece (Fessas, 1987; Kanavakis et al., 1997; Kattamis, Mallias, Metaxotou-Mavromati, & Matsaniotis, 1981; Loucopoulos et al., 1990; Loukopoulos et al., 1982; Loukopoulos et al., 1983). Over the past 20 years, support strategies have been developed in Greece by providing social benefits, tax allowances, cash benefits, and early retirement schemes to patients with thalassemia. However, the services offered are limited and much more needs to be done (Politis, 1998; Tsiantis, 1990; Tsiantis et al., 1990). Thanks to the policies implemented, the provision of services to patients with thalassemia gradually improved; in 1990, Politis et al., in a comparative study, found Greek patients with thalassemia to have a good level of social integration and argued that this achievement was caused by the provision of psychosocial support as part of a comprehensive approach to treatment. Furthermore, Politis, Richardson, and Yfantopoulos (1991) found that the average Greek citizen has a considerable knowledge of the disease and a supportive attitude toward the lifestyle of patients with thalassemia. More recent studies show that the life span of patients with thalassemia has been prolonged; most of them are now able to study or work and some of them are even married and have a family (Karagiorga-Lagana, 1998; Politis, 1998). Nevertheless, over the past years, a new aspect of the thalassemia problem in Greece has emerged. In

Thalassemia is a chronic illness with profound implications for individuals, families, and health services (Gill & Modell, 1998). Recent studies report that families are the main source of support for patients as they are burdened with frequent hospital visits and at the same time need to acquire a good general knowledge of the disease’s symptoms and management (Angastiniotis, 2002; Hoch, Gobel, & Janssen, 2000; Louthrenoo et al., 2002). It would seem that this burden is more than what most families can bear, as even parents of children with moderate thalassemia report —in the light of their experiences — that today they would opt for prenatal diagnosis and termination of an affected pregnancy even if a genotype predicting the mild form of this disorder were discovered (Ratip et al., 1995). Thalassemia major is a chronic disease and the impact of caregiving to chronically ill relatives on caregivers’ personal lives has been stressed repeatedly in the literature on this subject as additional areas of needs and rights are being identified (Burlew, Evans, & Oler, 1989; Chambers, Ryan, & Connor, 2001; Fisher, 2001; Hoch et al., 2000; Karnon et al., 1999; Musolf, 1991; Nash, 1990; Nolan & Grant, 1989). Emotional distress, anxiety, fear, difficulties in dealing with feelings, and the ensuing effects on normal family functioning are common problems in families with children who have thalassemia or other chronic illnesses (Burlew, Evans, & Oler, 1989; Chambers et al., 2001; Fisher, 2001; Hoch et al., 2000; Nash, 1990). Furthermore, research on hemoglobin disorders suggests that primary parents experience additional emotional strain in much the same way as primary parents of children with other chronic illnesses do (Burlew, Evans, & Oler, 1989). Fortunately, recent years have brought with them an increasing interest in the way parents cope with chronic illness during their offspring’s childhood; a shift away from merely describing the burdens of care is also noticeable in the literature on this topic (Atkin &

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Ahmad, 2000) and articles emphasizing the need for training doctors and nurses in how to deal with patients who have thalassemia major and their families have also been published (Angastiniotis, 2002; Tsiantis et al., 1990; Atkin & Ahmad, 2000).

The Impact of Thalassemia on the Greek Family Attempts to study the impact of thalassemia on patients’ and families’ lives have already been made in the past in Greece. As early as 1982, it was noted that parents of children with thalassemia experienced guilt, fear of death, and denial; that they were overprotective of their children; and that a conspiracy of silence regarding thalassemia was common practice in families with members who have thalassemia, while problems with hospital staff also existed. This awareness prompted staff to start providing support services to families, and, as is characteristically stated by all authors, this reduced problems (Tsiantis, Xypolita-Tsantili, & Papadakou-Lagoyianni, 1982). Another research study carried out some years later in Greece and Italy revealed that patients had a good level of social integration and a favorable image of themselves, thanks to the provision of psychosocial support by families and peers (Politis et al., 1990). Some years later, Tsiantis et al. (1996) found that thalassemia mobilizes adaptive mechanisms within the family; although a father’s low educational level and major medical complications were predictors of poor family adjustment, additional research have shown that a patient’s social role influences the patient’s as well as his or her family’s lifestyle (Politis, 1998). A need for improving the services provided for patients with thalassemia and families in Greece has been stressed in recent times (e.g., in an international research study revealing that many patients and families still experience physical and social limitations; Caro et al., 2002). Nevertheless, nursing research is missing from the Greek literature on this topic, although the experience of mothers as caregivers is of value for enhancing nursing practice. THE AIMS OF THE STUDY The aim of this study was to investigate the experiences of mothers caring for a child with thalassemia and the information and support provided to mothers by nursing staff. The research questions were as follows:

1. Which feelings are engendered by the caregiving experience in mothers of children with thalassemia? 2. What are the mothers’ opinions of the information and support provided to them by their families and by health care professionals?

METHODOLOGY

Population A convenience sample was obtained during a 3-month period in the autumn of 1999. During the first phase, researchers approached the head nurse of the ward, informed her about the research study, and requested her assistance. The head nurse then spoke to the mothers of children with thalassemia and asked them if they were interested in participating in a study. In the second phase, mothers who had expressed an interest in participating during the first phase were approached by a member of the research team, were given further information about the research study, including the confidentiality issue and the option of voluntary termination at any time without any repercussion whatsoever for current or future treatment, and after which were asked once again if they wished to participate. During this stage, 22 women were approached, 3 of whom withdrew for personal reasons, and convenient times for the interviews with the remaining 19 women were arranged.

Ethics The Nursing/Public Health and Social Hygiene Sector of the Health Visiting Department of the Higher Technological Educational Institute of Athens, acting as a public body and an ethics committee, approved our study, and permission to carry out the study in the hospital was given by competent hospital authorities.

Instruments for Data Collection The questionnaire used, which was written and administered in the Greek language, included seven open-ended questions for the purpose of eliciting the caregiving experiences of the mothers and the information and support provided by nursing staff. A last question provided an opportunity for each mother to share any additional information or feeling that she might wish to. Questions designed to elicit sociodemographic data were also included.

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Figure 1.

Final categories and subcategories used for the data analysis.

Three researchers applying a 100% nominal group process for professional agreement confirmed the content validity of the questions. The questionnaire was piloted with three mothers of children with thalassemia (not participants in the study) to validate that the questions elicited information regarding what was asked and to

determine that the questionnaire was easily understood by those being interviewed.

Data Collection Interviews were conducted in special offices at the hospital, in a manner that was sensitive to each respondent and lasting from 45 to 60

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minutes, depending on the response time of each mother. All interviews were recorded on audiotape. The patients with thalassemia were not present at the interview sessions. No additional information was obtained and no contact with the participants occurred after the interviews were completed. Participants received no compensation for participating in the interview sessions.

Data Analysis A content analysis review was applied (Banister, Burman, Parker, Taylor, & Tindall, 1994). All interviews were transcribed and transcripts were reviewed along with the audiotape to check accuracy. Transcripts were analyzed by three members of the research team using content analysis. For the purpose of achieving a thorough understanding of the material, researchers repeatedly and carefully read the transcribed interviews, following which each researcher independently classified the subjects’ responses into code categories related to the aims of the study. Next, researchers met to discuss the code categories, necessary adjustments were made, and three main code categories (feelings, information, and support) were agreed upon. The content of the main code categories was further categorized into subcategories meaningful to the study, which were once again agreed upon by the researchers. The final code categories and subcategories defined and used for data analysis are illustrated in Figure 1. Demographic information was separately analyzed with regard to sample size and each participant’s age, marital status, employment status, and level of education.

RESULTS

Demographics The mean age of the 19 women interviewed was 43 years (range, 30– 53 years). Of the participants, 18 were married and 1 was widowed. Nine women were not employed at the time of the interview. Of those women not employed, 1 had been selfemployed and stopped work when she became pregnant and 3 reported that they had stopped working because of the illness of their child. Six participants were working part time: 4 were working part time in the tourist industry, 1 was working as a part-time babysitter, and 1 was a part-

time house cleaner. Four women were working full time: 1 as a bank employee and 3 as employees in private firms (clerical work). Subjects reported quite a range of educational qualifications: 1 had a university degree, 3 were secondary education graduates, 10 were middle school graduates (nine years of education), and 5 were primary school graduates.

Content Analysis Results The following subsections give an analysis of the subcategories of each main category and contain quotations from the mothers’ answers as recorded.

Table 1. Answers Related to Memories of Feelings at the Time of Beta-Thalassemia Diagnosis Shock Questionnaire 3 â bI felt like a phantom. I could neither eat nor sleep, unable to discuss openly that my child had thalassemia.Q Questionnaire 6 â bI felt that they had put something very heavy on my chest.Q Questionnaire 13 â bI was shocked, I felt that I couldn’t breath properly and afterwards I felt faint.Q Questionnaire 18 â bI was totally shocked.Q Denial Questionnaire 1 â bI refused to believe that the diagnosis was true.Q Questionnaire 5 â bI thought that the diagnosis was a medical error, that it was not possible for this to happen to my child.Q Anger Questionnaire 2 â bI remember that I was very angry, with myself, with God, with every one!Q Questionnaire 19 â bI was very angry with my husband and his family. In his region and in his family they knew about this, but they never told me, and I was only seventeen years old when I was pregnant and far away from my parents.Q Sorrow and distress Questionnaire 10 â bI felt deep sorrow and distress.Q Questionnaire 12 â bFirst it was sorrow and afterwards I mourned for a long time.Q Fear of stigma Questionnaire 7 â bI hated myself for carrying the gene, for passing on to my children the inheritance of the thalassemia stigma.Q Questionnaire 15 â bI was the one to be blame for the stigmatisation of my children.Q Questionnaire 8 â bIt is not easy to speak to anyone and say that my child has got thalassemia.Q

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Feelings Related to the Information Provided About the Diagnosis of Their Children’s Illness

diagnosis. Nearly all women interviewed reported having experienced shock (8/19), psychological distress (5/19), and denial (6/19) as the most common feelings caused by the initial news that their child had been diagnosed with thalassemia.

Participants expressed their feelings and memories in connection with learning about their child’s

Table 2. Answers Related to Feelings About the Caregiving Experience Stress Questionnaire 15 â It is difficult and very stressful to fight the disease every day. Going to the hospital for transfusions, doing the de-ironisation and always knowing deep down that anything can happen at any time. . .Q Questionnaire 4 â b Thalassemia. . .hospital becomes a second home, but not a peaceful home, a stressful home where the child has to go through a Golgotha. . . and a mother must be, or at least have her child believe that she is a like a lion, that she has no fear. . .it is very stressful to try to be a hero day after day. . .Q Anxiety Questionnaire 2 â bAnxiety is a hidden enemy. . .but you feel that it can surface at any moment. . .it breaks out just when you feel that you are so confident and adjusted. . .Q Frustration Questionnaire 8 â bI was familiar with hospitals, as my mother was in hospital often. . .but taking a child to the hospital is not so easy. . .I still sometimes feel frustrated when I bring my child to the hospital. . .Q Sorrow Questionnaire 11 â bI see her and it is difficult for me to imagine a normal life for her, with a husband and children. Of course you never know what exactly will be happen in life, but when dreams for a child’s life are forbidden, a knife cuts the mother’s soul and it is transformed into a silent, long and lasting sorrow. . .Q Questionnaire 7 â bI don’t like to bother others with my problems and others find it difficult to discuss my feelings with me. Such thoughts are very personal and sometimes I become very frustrated when people ask questions or start a discussion in their attempts to help. Later I feel sadness and sorrow. . .Q Anxiety Questionnaire 5 â bYou have to bear the sorrow alone. Very often I have nightmares that something bad is coming and I am anxious for many days. . .Q Anger Questionnaire 14 â bI notice that I am taking time from the care of my other children and I feel guilty about that. However, he needs me more, emotionally and physically. . .I am a mother but also a human being and I can’t always be fair, but I feel angry and guilty about that. . .Q Anger and guilt Questionnaire 17 â bHe is the innocent victim, the heir who pays the debts of his ancestors, I am responsible for giving him this gene and I feel so angry with myself. . .Q Avoiding children’s questions Questionnaire 12 â bIt is difficult to discuss normal things. . .I see her and it is difficult for me to imagine a normal life for her, with a husband and children. Once she asked me dWhen I grow up, will I marry some one important like Daddy?T It was a common question that most of girls ask, and I was shocked for a while, but afterwards I answered her and said dof course.TQ Questionnaire 10 â bI remember that for a few moments I couldn’t speak when unexpectedly he asked: dDo people with thalassemia die early?TQ Questionnaire 3 â bI do not feel prepared to discuss the disease in detail. . .sometimes children ask difficult questions. . .Of course, I answer his questions, but I also asked the doctor to talk to him. . .Q Questionnaire 18 â bShe has the right to know about her disease. . .I felt it was better for the child to be informed by her mother rather than to be informed by the other children at school.Q Adjustment Questionnaire 13 â b. . .however, as time passes, you accept the reality and adjust to the situation. It is a survival strategy for the child, for the family and for you. . . it becomes a routine. . .You go to the hospital, you provide the care and you learn how to do even the more difficult things. . .Q Questionnaire 19 â b. . .it is a routine. . .but you never know if everything will be OK every day. . .I remember one day he had the flu and a high fever. . .and I was wondering if he would be able to carry on with all of that and the therapy. . .Q

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Furthermore, 6 of the 19 women also feared social stigmatization. Examples of the mothers’ feelings at the time of diagnosis are listed in Table 1. Feelings Related to the Caregiving Experience Mutual problems became apparent in connection with issues surrounding the disease and therapy. Participants shared a high degree of consistency in answers given related to issues dealt with during the many years of continuously caring for their children suffering from thalassemia. The most common answers given indicated that the situation of care and treatment is stressful (16/19), but all the mothers (19/19) also stressed that they have gradually adjusted, in some way, to the situation and have found personal ways of dealing with it. Nevertheless, despite the participants’ claim that they have adjusted to the reality of thalassemia, the problems related to the customary management of the disease and its influence on everyday family life still exist. Some mothers (6/19) admitted that they were aware of the fact that they frequently try to avoid facing children’s questions, particularly those concerned with the possibility of death, because they do not feel prepared to answer them. Moreover, despite reports that emotional support from husbands and extended families related to caring for a child was being provided, most of the participants (16/19) face anxiety, frustration, guilt, and sorrow and quite often encounter problems in dealing with

Table 3. Answers Related to Information Provided Questionnaire 6 â bNo one told me about doing tests, neither before nor during pregnancy. . .Q Questionnaire 8 â bI didn’t know that I was a carrier, and as my pregnancy was normal I didn’t consult a doctor about this. . .Q Questionnaire 16 â bDoctors gave information. . .Doctors and nurses usually answered my questions when initially I felt the need to learn more about the disease. . .But I still have needs now. . .I am not sure that I know how to communicate effectively with my child, and in particular answer questions. . .It would be good to offer mothers guidance, regular support. . .but everyone thinks that you become an expert. . .Q Questionnaire 19 â bI was given information but there was so much of it and it came at such a stressful time, just after the diagnosis and the first period of hospitalisation. Later I learned more by experience. . .the emphasis is put on this initial phase by the staff. . .after that you have to go to them and ask. . .but I’d prefer the information and support to be provided continually. . .Q

Table 4. Answers Related to Support from Husbands and Extended Families Questionnaire 5 â bMy husband also cares, but he works long hours and I have to go to the hospital with our child. I feel alone, I am afraid. . .Q Questionnaire 8 â bSometimes my husband gives us a lift to the hospital but that is not always possible. . .Q Questionnaire 12 â bThe first time everyone was giving me courage, and I had many people available for discussing and sharing my feelings. But later on it is a disease for life, and everyone has their own life to lead. . .Q Questionnaire 14 â bMy husband is a kind man and I don’t want to bother him with my problems. He has so many things on his mind. . .Q Questionnaire 3 â bThere is a myth about the support given in Greece by the extended family. Of course they offer support and are helpful but it not possible for them to know your real needs. . .or to always have someone available.Q Questionnaire 18 â bMy mother helps and encourages me a lot. . .Q Questionnaire 1 â bMy husband and relatives are supportive, but the main care-giving is done by the mother, and sometimes it is so difficult to share feelings, these things are so personal. . .Q Questionnaire 7 â bI don’t like to bother others with my problems and the others find it difficult to discuss my feelings with me. Such things are very personal and sometimes I become very frustrated when people are asking questions or start a discussion in their attempts to help. Later I feel sadness and sorrow. . .Q Questionnaire 17 â bYou have to bear the sorrow alone. Very often I have nightmares that something bad is coming and I am anxious for many days. . .Q

their feelings, particularly in dealing with anger (9/19), overcoming frustration (3/19), and guilt (2/19). The voice of these mothers expressing their feelings is reflected in Table 2. Information About Carrier Testing or Genetic Screening for Thalassemia and Information About Thalassemia Management The results of the study revealed that a considerably high proportion (33%) of the sample (7/19) did not know that they were carriers of the thalassemia gene and that neither were they informed about carrier testing before marriage or genetic screening for thalassemia in early pregnancy. Most of the mothers (16/19) reported that they had received sufficient information from doctors concerning the diagnosis and treatment of the illness of their children whereas all mothers stated that they had been provided with information regarding the process of deironization.

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In their spontaneous comments, mothers (5/19) explained that they wanted information and guidance on how to communicate effectively with the ill and healthy children in their family. Table 3 shows examples of the mothers’ answers regarding information provided. Support From Husbands and Extended Families The participants described various types of emotional and practical support provided by the husbands and extended families. Nevertheless, all mothers (19/19) felt that they were practically on their own when it came to the transfusion process because they are the ones who usually accompany their child to the hospital. However, most of the women (18/19) — with the exception of the widowed respondent — said that they received emotional and practical support from their husband whereas 15 spoke of additional support from their extended families (e.g., their own mother, mother-in-law, sisters, sisters-in-law, brothers). Most participants stressed that problems continue to exist despite this support. Excerpts from the mothers’ answers related to support received from husbands and extended families are presented in Table 4.

Table 5. Answers Related to Support Provided by Health Care Professionals Questionnaire 8 â bI was given support. The first time everyone, doctors and nurses alike, encouraged me in facing the disease and its treatment. . . after that you have to ask for help, or possibly you will be given some support occasionally if someone on the staff notices that something is bothering you. . .Q Questionnaire 2 â bThe head nurse is a kind person and I feel free to ask her for help. . .Q Questionnaire 18 â b. . .Yes, support was given, particularly during the initial phase. Nevertheless, problems always arise, and when you need to talk about your anxiety or fear you see that everyone is very busy. . .Q Questionnaire 17 â bI would like some more support. . .but I think it is a cultural issue. . . we consider that it is mainly a family matter to provide support to its members. . .so I hesitate to bother the staff. . .Q Questionnaire 16 â bThere are only a few nurses in the ward and thus I don’t believe that regular supportive programs can be organised and run by these nurses alone. . .Q Questionnaire 7 â bI would like it if it were possible to have some time for discussion, emotional support or guidance offered by nurses on a regular basis. . .nurses are women and it is easier and more comfortable to have this kind of discussion with another woman. . .Q

Help and Support Available From Health Professionals The adequacy, limitations, and insufficiency of support provided by health professionals were also explored. All mothers said that they had received support from doctors, nurses, and social workers, especially at the time of the initial transfusions. Mothers were also asked whether they had been offered any emotional support in dealing with their children’s illness after this initial period, and only several (4/19) reported that they had been offered any further help from doctors, nurses, and social workers with regard to the concerns of caring for children with a serious illness and dealing with emotions. Approximately half of the women (8/19) reported that they would have welcomed encouragement, as well as an adequate and accurate knowledge of child development. All participants stressed that they would have liked to receive more support, such as time for discussion, emotional support, and guidance from nurses. However, 15 women said that considering the tremendous shortage of nursing staff, they understood that it is difficult for nurses to start providing such services. Furthermore, 10 mothers reported that they do not feel free to ask nurses to take the time to talk because they seem to be constantly busy. Examples of the support provided to mothers by health professionals are listed in Table 5.

DISCUSSION Because of its qualitative nature, the present study has contributed to the identification of significant issues related to the caregiving experience and to truly meeting the needs of the mothers caring for children with thalassemia. Although the findings cannot be generalized because they come from a qualitative study, they do point to opportunities for gaining a greater and deeper knowledge of the area. A considerable absence of information availability regarding carrier testing and a lack of support when the bad news is broken to families are apparent in the answers given by the mothers of children with thalassemia. Obviously, there was a great shortage of information on carrier testing and genetic screening for thalassemia at the time when these subjects were pregnant (i.e., at least 12 years ago). Although we are by no means claiming that

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it is possible to generalize the results of the present study, our findings provide important insights into the prevailing situation two decades ago in Greece, prior to the measures taken against thalassemia, and corroborate the claim made by Manitsa et al. (2002) that offering thalassemia carrier testing to immigrants must be at the center of preventive measures against thalassemia in Greece. Furthermore, it is apparent from the results that the nature of thalassemia treatment (transfusions and chelation therapy) imposes a heavy psychosocial burden on mothers, who are the chief caregivers, and raises issues related to public health, in connection with the adequacy and effectiveness of the services provided to families with members who have thalassemia. Emotional problems and difficulties in dealing with feelings were the most common problems of the participants; although they reported that the husbands and extended families gave support, it is worth stressing that the mothers stated that the troubles continued to exist. Although this finding can be seen in the light of the speculation made by Cimete (2002) that sometimes expectations of support from the extended family are high and therefore the support offered is perceived as inadequate or insufficient, this is nevertheless not always the case, as other issues may also remain unresolved. Another explanative approach to the finding can be made by taking into account that, 20 years after the establishment of the national health system, community care in Greece continues to be insufficient, community care services in cities have not yet been established, and rural health care centers operating within the system are inadequately staffed, resulting in a limited provision of services that fails to cover the real needs of the population (Matsaganis, 1998; Liaropoulos & Kaitelidou, 1998; Sapountzi-Krepia et al., 2003) and, thus, the fact that supportive services empowering the families of chronically ill patients are not usually provided by community services. However, it should be taken into account that mothers are the main caregivers for children with thalassemia and special attention must be paid to supporting them in continuing their intense caregiving obligations, which they carry out alongside many household duties, by offering them services not only by hospital staff but also by community services. Health education programs assisting mothers in building more assertiveness in their behavior and helping them pursue effective ways of asking for

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support from existing support systems could be introduced by hospitals or by rural health centers in the areas of the country most affected by thalassemia. These could prove very helpful to mothers of children with thalassemia and families as a whole. Furthermore, it is important to stress that inadequate support and information received from health care professionals in hospitals was also reported by approximately half of the sample, accompanied by the desire for more opportunities to talk about care and treatment and for support provided on a more regular basis. In addition, a remark important for pediatric nurses was also made by many of the participants who stressed that having nurses available to discuss their problems would be very beneficial. Although over the past years supportive services for families with members who have thalassemia have been developed in some Greek hospitals (Politis, 1998), it must be emphasized that the organizational culture of the health care services developed in the course of the last 20 years in Greece, together with the cultural patterns of the Greek family, created a climate in which it is not only expected but indeed required that families not only provide home care for the sick and elderly persons but also participate in hospital care for hospitalized family members (Bellou-Mylona, Iordanou, Kyriakidou, Evangelou, & Kostandou, 2002; Sapountzi-Krepia, Kalofyssudis, Psychoyiou, Peterson, & Sakellari, 2001; Sapountzi-Krepia, Tsisrintani, Binioris, Psychoyiou, & Peterson, 2001); this prevalent culture would seem to result in the provision of limited services to the families of hospitalized patients. The need to provide information and support to families is widely recognized, and an increasing interest in providing support to parents has appeared in health care literature (Angastiniotis, 2002; Atkin & Ahmad, 2000; Burlew, Evans, & Oler, 1989; Hoch et al., 2000; Louthrenoo et al., 2002; Politis, 1998; Tsiantis et al., 1990; Tsiantis et al., 1996). Nevertheless, it seems that much greater efforts should be made because, as mentioned by Atkin, Ahmad, and Anionwu (1998), problematic issues in connection with the support provided to caregivers arise frequently. As a final comment on the results of the present study, let us say that the support that mothers deserve to receive from health care professionals requires developing an empathetic understanding of the needs of these caregivers and broadening the

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services provided within the health care system to encompass more supportive services. With a view to nursing, it is worth mentioning that most mothers stressed that considering the tremendous shortage of nursing staff, it is difficult for nurses to offer opportunities for discussion or guidance.

families. Although the shortage of nursing staff in Greece, as mentioned in earlier studies (Sapountzi-Krepia, Kalofyssudis, et al., 2001; Sapountzi-Krepia, Tsisrintani, et al., 2001), seems to be a barrier to improving the services provided by the Greek national health system, nurses should nevertheless be able to find ways of offering more relief to patients with thalassemia and families. As Truong and Ferguson (2003) have stressed, history has shown that besides providing nursing care, nurses also help their patients seek ways of having their needs met; therefore, pediatric nurses in Greece should advocate the necessary changes in health care services. Our findings thus lead us to the conclusion that the development of specific nursing policies may affect the quality and the amount of support provided to mothers of children with thalassemia.

Implications for Pediatric Nursing The findings of our study raise interesting points for pediatric nurses in Greece and suggest that special efforts must be made in several areas of practice, which until recently have been neglected. It is obvious that the support provided to mothers of children with thalassemia is quite insufficient; pediatric nurses have a responsibility to meet this need. Although the shortage of nurses imposes considerable difficulties on the extension of the services provided by pediatric nurses in Greek hospitals, pediatric nurses should seek to broaden the range of their interventions in support of mothers of children with thalassemia, and they could start by providing systematic health education and counseling programs to patients and

ACKNOWLEDGMENTS We are grateful to all the mothers who participated in this study for taking time to talk about their experiences.

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