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Coping strategies of family with a chronically ill child
section nursing
kontakt 16 (2014) e31–e38
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Original research article
Coping strategies of family with a chronically ill child Lucie Sikorová *, Markéta Polochová University of Ostrava, Faculty of Medicine, Department of Nursing and Midwifery, Czech Republic
article info
abstract
Article history:
Any childhood disease is stress for parents or other carers. The goal of this survey was to
Received 11 June 2013
assess what coping strategies are used in families with a chronically ill child to cope with the
Accepted 18 October 2013
resulting stress situations. The examined cohort consisted of parents of children suffering
Available online 4 February 2014
from a selected chronic disease (diabetes mellitus, bronchial asthma, juvenile rheumatoid
Keywords:
specialized paediatric out-patient's departments in Ostrava hospitals. The total number of
Stress
respondents was 162 parents (122 mothers and 40 fathers). Chronically ill children in the
arthritis, atopic eczema, celiac disease, epilepsy, and thyroid gland disease), and attending
Chronic disease
parents' cohort included 80 boys and 82 girls. Data were collected by means of the quanti-
Child
tative cross-sectional survey method. The main research method was an F-COPES ques-
Coping
tionnaire (Family Crisis Oriented Personal Evaluation Scales). Stress in the family related to
F-COPES
the disease of a child, was felt by 95 (59%) respondents of the cohort. The perception of stress by parents differed significantly ( p < 0.01) according to the kind of chronic disease (mostly the parents of children suffering from celiac disease, juvenile rheumatoid arthritis and diabetes mellitus). It followed from the answers of respondents that they most frequently applied internal coping strategies to cope with problems – the redefinition of a stressful event as a more manageable one and the acceptance of stress by moderating reactivity, avoidance or passivity. In the use of coping strategies, no significant difference was found depending on the sex of parents, their age, the duration of the disease, the sex of the chronically ill child or the number of siblings. Unlike families with a single parent, complete families used their closer social surroundings significantly more ( p = 0.046) for help in coping with stress, and thus they were distinguished by a more adaptive behaviour mechanism, similar to parents with a higher level of education. # 2014 Published by Elsevier Urban & Partner Sp. z o.o. on behalf of Faculty of Health and Social Studies of University of South Bohemia in České Budějovice.
Introduction The existence of a chronic disease is always connected with stress both for the ill persons themselves, and for their closest relatives. In the case of an ill child, the stress, concerns or
problems increase considerably, and are felt especially by the parents and the child's closest family. Chronic diseases proceed less sharply than acute ones but their symptoms are present more or less permanently. Many diseases have alternating periods when the ill person feels quite well and symptoms are hardly apparent, and periods when the
* Corresponding author at: Syllabova 19, 703 00 Ostrava-Zábřeh, Czech Republic. E-mail address: [email protected] (L. Sikorová). 1212-4117/$ – see front matter # 2014 Published by Elsevier Urban & Partner Sp. z o.o. on behalf of Faculty of Health and Social Studies of University of South Bohemia in České Budějovice. http://dx.doi.org/10.1016/j.kontakt.2014.01.002
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condition sharply worsens. A child's chronic disease threatens their emotional and social development; and handicaps them: in education, due to frequent absence from school; in the selection of occupation due to various health limitations; and in friendships and peer relationships, due to the frequent disability or absence from play activities [1, p. 278]. In general, ill children are often exhausted, less resistant to stress, are more frequently absent from school and are limited in some activities, etc. As Satirová states [2, p. 208], life with a healthy child, although joyful, also brings about stress and various worries. When a child falls ill, the stress, worries or problems increase considerably [3, p. 51]. A disease or its worsening, causes frustration to the members of the family, affects them in a negative way, limits their lifestyle and prospects. The family must often revaluate its previous lifestyle, change plans and goals and correct its previous view of the future [4, p. 117–8]. Families with an ill child are subject to many dangers which can influence their internal cohesion more easily [5, p. 279]. Messing up the family system by such stress can result in family dissolution, but on the other hand, it can strengthen internal family relationships when the family accepts the illness as a part of life, as their common task [6, p. 104]. In the case of child disease, parents particularly face a difficult task in coping with precarious situations. How they cope with specific problems and stress associated with the disease of the child also significantly affects the child, because parents are an example for the child who adopts their attitudes, opinions and feelings. The manner in which parents respond to stress, how they work with it and to what extent they manage it, co-determines how the situation will also be stressful for the child [6, p. 101]. It is very important for all family members and particularly for the child, that the parents and all the persons involved, cope with the current situation, and as far as possible live a normal satisfying life [7, p. 37]. Coping with stress depends on the respective processes which run in a stress situation. All strategies used in coping with precarious situations have the identical goal of helping the person to maintain an acceptable level of mental equanimity. Methods of coping (coping strategies) can differ and can have different effects [6, p. 85]. Coping is an active knowledgeable manner of coping with stress. It is used in cases of above-limit or sub-limit stress with regard to the circumstances of an individual when greater effort must be made to cope with it [8, p. 79]. Strategies for coping with such stress include the use of the nearest social support network, the search for spiritual support, the redefinition of a stress event, and the search for sources of help in society (e.g. civic associations, self-aid organizations, social and health services). Researches dealing with stress and coping with it in the family are not as extensive as studies focusing on stress and coping with it by an individual [9, p. 77]. If a nurse is to help in coping with stress to families with a chronically ill child, common ways of family coping with stress must be identified and families which are most threatened by maladaptation must be identified. Statistical data on the occurrence of chronic diseases in children are alarming. Epidemiological studies from abroad show that one in ten children up to the age of 15 suffers from a chronic disease [10, p. 1]. Colorosová [11, p. 61] includes
asthma, allergy, arthritis, diabetes, epilepsy and a tumour disease in the six major current chronic diseases of the present. According to the Institute of Health Information and Statistics of the Czech Republic [12, p. 35–9] the most frequent chronic diseases suffered by children from 0 to 18 (or 0–19 in the Czech Republic) are diabetes mellitus, epilepsy, atopic eczema and bronchial asthma. All the aforementioned diseases are connected with frequent contact with physicians, the long-term use of drugs and permanent restricting of the child's natural activities and needs. The goal of the survey was to assess how families with a chronically ill child cope with stress situations. Furthermore, the goal was to determine whether the selected variables (the character of the disease and the characteristics of parents and children) influence coping with stress in the family with a chronically ill child.
Materials and methods The surveyed cohort consisted of parents of children with one of the selected chronic diseases from a list: diabetes mellitus, bronchial asthma, juvenile rheumatoid arthritis, atopic eczema, celiac disease, epilepsy, and thyroid gland disease attending specialized children out-patient units of Ostrava hospitals, i.e. the Faculty Hospital Ostrava, the Municipal Hospital Ostrava and the Vítkovice Hospital in Ostrava. The total number of respondents was 162 parents, of which the majority (75%) were mothers of the ill children. The definition of a chronic disease in childhood is not uniform in the literature, but the present study understands it as a disease which must meet the following criteria: its occurrence at the age of 0–18; its diagnosis is based on medical scientific knowledge with the use of a valid method or tool; the disease is incurable or highly resistant to treatment, and it persists for more than three months, there is a presumed high probability of persistence for more than three months, acute symptoms have occurred three times and more times during the previous year: and they are likely to recur. The criteria were set by a team of specialists from the Netherlands [13, p. 1444] on the basis of a consensual approach. The data collection method was the quantitative crosssection survey. The main research tool was the F-COPES (Family Crisis Oriented Personal Evaluation Scale) questionnaire which was one of the diagnostic methods published in ‘‘Family assessment: Resiliency, coping and adaption – inventories for research and practice’’ together with an extensive manual of test methods focusing on the operation of the family system under stress. The questionnaire itself was elaborated in 1981 by McCubbin et al. [14, p. 294–7] and the use of this assessment tool for research purposes was approved by the author of the tool. The Cronbach's alpha coefficient for individual sub-scales ranges from 0.64 to 0.84, and the authors of the questionnaire state the Cronbach's alpha (a) of 0.86 for the whole tool. Its goal is to identify strategies of problem solutions and behavioural strategies used by the family in difficult situations. The questionnaire was translated from the English original by two independent translators, the versions were compared and the final Czech version was translated to English and consequently to Czech. The final form of the questionnaire was compared
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with the version published in Czech by Lemermanová [15, p. 118]. According to Sobotková [9, p. 79] the questionnaire accepts criteria of cultural sensitivity within the social-cultural context. The questionnaire contains 30 items which are divided into five subscales (except for item 18 which is not included in any subscale).
Subscales
I.
II.
III. IV.
V.
The use of the nearest social support network – includes 9 items which measure the ability of the family to actively gain social support from relatives, friends, neighbours and the wider family. The emotional-cognitive restructuring of the stress situation (also called ‘‘reframing’’) – 8 items which evaluate the ability of the family to redefine stressful events to be better manageable. The search for spiritual support – 4 items focusing on the ability of the family to obtain spiritual support. The family mobilization to accept help – 4 items which determine the ability to find sources of help in the society and also the ability to accept help from such sources (selfaid groups, civic associations, consulting or health services, etc.). The inactive problem solution (also called ‘‘passive evaluation’’) – 4 items which evaluate the ability to accept problematic issues by moderating the reactivity.
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only completed secondary education (47%). Complete families were most frequently represented in the monitored cohort (70%). Families, in which the ill child is the only child, were 43 families (27%), 88 children have at least one sibling (54%) and the other children have more than one sibling. The chronically ill children in the parental cohort included 80 boys (49%) and 82 girls (51%). According to age categories, the group of children at the younger school age was the highest number (81 children, 50%). Another 53 children (33%) were at the older school age and the smallest group of 28 children (17%) were at the pre-school age. The most common disease suffered by the group surveyed was diabetes mellitus – 31 children (19%). The second most frequent disease was epilepsy – 26 children (16%). Children often suffered from more than one disease: 23 children (14%) in our cohort. Besides the combination of the selected diseases, this category also included other diseases in combination with some of the selected diseases; these included haemophilia, child cerebral palsy, chronic intestinal inflammation, and tumour diseases. 20 children suffered from atopic eczema, 18 children from celiac disease, 17 from bronchial asthma, 15 from thyroid disease and 12 children from juvenile rheumatoid arthritis. The average term of the disease was 5.24 years.
Stress in the family
Results
Stress in the family in relation to the child disease, was felt by 95 respondents (59%) of the cohort. Stress perception by the family differed ( p < 0.01) depending on the kind of disease (Chart 1). Almost all parents (94%) of children with celiac disease perceived the chronic disease of their child as a stress. A high percentage of disease evaluation as a stress also showed with juvenile rheumatoid arthritis (83%) and with diabetes mellitus (81% of parents). Parents who evaluated the child's disease as a stress consequently selected areas where they felt this stress. Many of them stated more than one stressful area. Of the total number of 95 parents, the majority felt stress in the area of spending leisure time – 45 parents (47%), in the area of attending school/kindergarten – 41 parents (43%), problematic nutrition of the child – 39 parents (41%), problems in their employment (32%) and in the family budget (29%). Stress in the family can of course, also be related to a range of problems. The majority of parents, including those who did not feel stress in the family, perceive a higher occurrence of problems in relation to the disease. Many parents stated more than one current problem they had to cope with; most frequently they were was financial issues; 48 parents (30%). In contrast, 37 parents of the cohort reported no problem (23%). More than 20% of parents reported problems with catering at school or kindergarten, and nearly the same number of parents stated that they had to address other problems as well. The following problems were mentioned most frequently:
The total number of respondents included 162 parents of ill children (122 women and 40 men). Most parents were at the age of 31–40 (60%), the age category above 40 consisted of 45 parents (28%). The least represented age category was up to 30 years (n = 19), which is 12% of the cohort (the mean was 37 years: max. 56; min. 24 years). The majority of parents had
– fluctuations in blood sugar and thus the mood of the child; – occasional failure to adhere to the regime by the child; – permanent need to check the child, the necessity to be always alert – problems with supervision; – problems related to school or kindergarten – the necessity to accompany the child at school activities, insulin application;
Each of these individual items represents the specific behaviour of the family. The level of use of individual ways of behaviour in families is determined on the basis of answers of respondents on the five-point Likert's scale (1 = never, 5 = always). Ways of behaving are further divided into two basic coping levels where items within subscales I, III and IV belong to external coping strategies and items of subscales II and V belong to internal coping strategies. F-COPES can be evaluated in total or within subscales. The final total score ranges between 30 and 150, where the highest score means the more adaptive behaviour of families in coping with the stress situation [16, p. 455–61]. The F-COPES questionnaire was supplemented by items mapping the social-demographic parameters of respondents. The data obtained were processed in Microsoft Excel 2007 and consequently analysed by means of OpenEpi, a statistic programme. To reveal the relationships between socialdemographic characteristics and the evaluated items of the questionnaire, Fisher's exact test, t-test for two selections, x2 test and the ANOVA – the analysis of variance – were used. Statistic tests were evaluated with the statistic significance a = 0.05 (5%).
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Chart 1 – Stress in families with chronically ill child depending on the kind of child's disease.
– coping with free time activities – travelling, sport; – mental stress, the non-equanimity and helplessness of parents; – obesity of the child in relation to the disease and drugs, etc.
Coping strategies The total score of the F-COPES questionnaire ranges between 30 and 150, where the highest score means more adaptive behaviour of families in coping with the stress situation. The average score of respondents within the entire surveyed cohort was 90.09, which means an average value of the total possible score. None of the respondents achieved the possible maximum or minimum (max. 121, min. 58). The first subscale consists of 9 items showing specific behaviour of the family related to coping with stress in cooperation with the family and the nearest social surroundings. A score of 9–45 could be achieved within the subscale. The average achieved value in this subscale was 26.04 (Table 1). It is obvious from the percentage distribution of individual selected items that respondents most frequently
answered ‘‘sometimes’’, which shows neither significant use, nor significant non-use of strategies focused on the use of the nearest social support. However, according to average item scores families most frequently share their problems with relatives. The second subscale of redefining the stress event as a more manageable one (reframing) contains 8 items. The score here ranges between 8 and 40 and the average achieved value was 30.52. The average score of an individual proves it was the most frequently used strategy in the family. According to average item values, the obviously most used styles were: coping with stress – the determination to address all occurring problems (4.27) – and family faith that it would cope with its own problems (4.12). The third subscale focused on the ability of the family to obtain spiritual support (4 items). The score here ranges between 4 and 20. The average score of parents was 8.09. This was a less frequently used strategy by parents. The behaviour oriented to faith in God was most frequently used within this subscale in coping with stress according to the average item score (2.87). The fourth subscale focuses on the ability of the family to actively search for help in society and at the same time the ability to accept help and use it efficiently. This subscale includes four
Table 1 – Subscale score of the F-COPES questionnaire. Characteristics of F-COPES questionnaire
Average Minimum Maximum SD Average item score
Total score
90.09 58 121 10.99 3.00
Subscale score I
II
III
IV
V
26.04 11 45 6.07 2.89
30.52 20 40 4.37 3.82
8.09 4 19 4.69 2.02
9.94 4 20 3.06 2.49
12.49 6 20 2.36 3.12
I – the use of the nearest social supportive network; II – reframing; III – the search for spiritual support; IV – family mobilization for help acceptance; V – passive evaluation.
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Table 2 – The comparison of average F-COPES scores depending on parents' education. Parents' education
Lower Higher Total p-Value
F-COPES score Total
I
II
III
IV
V
82.32 92.15 90.09 0.000
23.24 26.79 26.04 0.002
30.06 30.65 30.52 0.469
5.97 8.65 8.09 0.000
8.76 10.26 9.94 0.010
11.71 12.70 12.49 0.029
I – the use of the nearest social supportive network; II – reframing; III – the search for spiritual support; IV – family mobilization for help acceptance; V – passive evaluation.
questions. It is obvious on the basis of the value of the average item score (3.44) that the majority of families look for help in offices of general practitioners. The second most frequently used strategy is the search for advice from other families which have coped with similar problems (2.78). In contrast, many families do not use the professional consultancy and assistance of social offices, which is proved both by the lower average item score, and the percentage representation of respondents in the ‘‘never’’ answer (51% and 48%). The fifth subscale, focusing on the inactive addressing of problems by the family, includes four items. These are: the ability of the family to accept problematic issues; by moderating the reactivity to stress; avoiding the stress or passively responding to stress. The range of the possible score was 4–20. The average score achieved by parents in this scale was 12.49. The reverse numeric value was used in these items, which means the lowest average item score indicates the highest use of this inactive coping strategy. The most frequently used strategy within this subscale was watching TV (2.81) and relying on the fact that the problem will settle itself in the course of time (2.85). It followed from the answers of the respondents that, when coping with problems, internal coping strategies are used more frequently, which include subscales II and V, with the average value per item describing the behaviour of the family of 3.58. Families significantly less frequently use the external coping strategies, which include subscales I, III and IV, the average value of which per item describing the behaviour of the family only was 2.59. Minimum differences appeared in average final values of FCOPES depending on the sex of parents ( p = 0.167). The biggest
differences appeared in subscale I determining the ability of the family to actively obtain social support, be it from the family, friends or any persons close to the respondent. A statistical significance ( p = 0.048) was confirmed in this subscale which showed that women are more oriented to the search for help from their close relatives. No significant difference in the use of coping strategies was found between younger (up to 30) and older (above 30) parents ( p = 0.783). The statistically significant difference was found in the use of coping strategies depending on the level of the parents' education. Parents with lower education (elementary, apprenticeship) coped with stress in a more difficult way than parents with higher education at all subscales except for subscale II – reframing (Table 2). Another important factor which can influence coping with stress by the family with a chronically ill child is the type of the chronic disease. The research cohort was divided according to the presence of 8 types of chronic diseases including an item containing a combination of diseases. Of the represented 8 types of diseases, the above-average score, i.e. more than 90 points within the total score, only appeared in half. More adaptive behaviour under stress was identified in families of children with bronchial asthma (97.53), atopic eczema (95.60), celiac disease (96.56) and juvenile rheumatoid arthritis (91.33) ( p < 0.001). The subscale comparison showed two similar coping strategies for parents of children with all the aforementioned diseases in the field of reframing and the use of the passive approach (subscales II and V). As can be seen in Table 3, the close social surroundings were used for coping with stress most frequently by parents of children with bronchial asthma, the least frequently with thyroid gland
Table 3 – The comparison of average F-COPES scores depending on the type of chronic disease. Child's disease
Diabetes mellitus Asthma Atopic eczema Celiac disease Epilepsy Thyroid gland disease Juvenile rheumatoid arthritis Combination Total p-Value
F-COPES score Total
I
II
III
IV
V
84.81 97.53 95.60 96.56 86.96 82.13 91.33 89.91 90.09 0.000
23.03 31.18 28.40 28.17 24.04 22.87 28.50 25.65 26.04 0.000
30.29 31.65 30.25 30.11 30.77 29.87 28.83 31.61 30.52 0.656
6.35 9.06 12.40 10.50 6.58 5.60 7.92 7.48 8.09 0.000
9.00 10.76 10.00 11.67 10.58 8.47 10.58 9.13 9.94 0.016
13.16 11.71 11.20 12.83 12.35 12.33 12.75 13.13 12.49 0.076
I – the use of the nearest social supportive network; II – reframing; III – the search for spiritual support; IV – family mobilization for help acceptance; V – passive evaluation.
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disease. Using spiritual support as a coping strategy was mostly reported by parents of children with atopic eczema, the least frequently by parents of children with thyroid gland disease. The wider social network including general practitioners was used by the majority of parents of children with celiac disease and the least frequently by parents of children with thyroid gland disease (Table 3). The chronic diseases differ not only in the type of disease, but also in its duration. To be able to determine the relation between the duration of the disease and coping with stress, the cohort was divided to two categories. One of them included diseases lasting for up to two years inclusive, the other lasting for more than two years. Within the total score, a higher score (i.e. a better coping strategy) was achieved by parents of children with a shorter term of the disease (up to two years) compared to parents of children with a longer term of disease (more than two years). However, the difference was insignificant, even in individual subscales and in the total score ( p = 0.222). According to the results of F-COPES, complete families significantly more frequently used it close social surroundings for help in coping with stress ( p = 0.046) compared to families with a single parent. No significant difference was noted in the use of coping strategies between families with children of different sex, different age or different number of siblings.
Discussion The goal of the survey was to assess how families with a chronically ill child coped with stress situations and to map factors which influenced coping with stress. With regard to the slightly above-average score in coping with stress obtained from the F-COPES questionnaire the behaviour of families can be evaluated as adaptive. Results show that the use of internal coping strategies significantly exceeded the use of external coping strategies. The most frequently used coping strategy was reframing or the ability to redefine onerous situations so that they were more manageable for the family. In contrast, the least used strategy was the external strategy focused on a search for spiritual support. Almost identical results were found in the study focusing on coping with stress in the family in the care for an autistic child [17, p. 44–5] where families having an autistic child were compared with a control cohort of families with healthy children. The study used the same questionnaire. The most frequently used coping strategies was reframing and obtaining social support. In contrast, the least used strategy was spiritual support. The results of the study are also in harmony with the study of the quality of life of the parents [18, p. 72] which confirmed the importance of social support for coping with parental stress. Social support helps in coping with stress situations but does not solve these situations for an individual. Depending on the type of chronic disease, better coping is apparent with parents of children with bronchial asthma, atopic eczema, celiac disease and juvenile rheumatoid arthritis although Nuutila and Salanterë [19, p. 158] state that despite various diagnoses there are some similarities in the experience of parents in coping with a long-term illness of a child. Parental responses to stress can change depending on
the progress of the child's disease. If the child's condition is stable or even improves, it acts positively on the family. In the opposite case, when the disease worsens, despair increases in parents. Uncertainty and concerns for the health of the child can result in irrational activities or rash reactions of the parents. However, any activity shown to be effective helps parents and the whole family overcome stress. Our cohort compared two family categories with different durations of the disease. Slight differences appeared between these families in average achieved values but the statistic significance was not confirmed within the total score. Similar results were achieved in the research of coping with stress in a family with a child with a congenial heart disease, where according to the characteristics of the disease (seriousness, age at diagnostics, duration) no differences appeared in the field of family stress. The authors explain the situation by the fact that most cases did not represent a developed form of the disease, but rather an asymptomatic period with short duration [20, p. 195]. Our survey did not consider the fact of seriousness of the disease; therefore results should be considered as orientation or as being indicative. Whether the family is complete, incomplete or complemented does not decide on its functionality or ability to cope with stress. The structure and arrangement of the family do not matter, but what does matter is what processes and relationships are occurring inside the family [9, p. 72]. This thesis was also confirmed in our cohort where no statistically significant differences in the total score were found after comparing the results of coping with stress between families with different structures. As in our survey, which resulted in the difference in coping with stress between parents with a higher and lower education, Rieger and McGrail [21, p. 89] found on the basis of a study focused on coping with stress and family functioning of parents of handicapped children that the level of education had a significant predictive influence on the coherence and flexibility of the family. Our survey mostly included children of a younger school age group; however, there were fewer children of an older school age and the smallest number children were of preschool age. There were slight differences in the field of coping with stress between parents of differently aged children. The statistical significance of these differences however was not confirmed within the total score. The same result was also achieved in the research of coping with stress in a family with a child with congenital heart disease, where according to the characteristics of children (sex and age) there were no differences in the field of coping with stress by parents [20, p. 195]. Crises can take many forms. In relation to our parents (or the whole family) it especially occurs at the time of the revelation of the disease and in the case of the sudden or lifethreatening worsening of their condition. Besides the necessity to mobilize internal resources in these situations there is a need to have someone close and to feel safe, which may be achieved for the family by coherence of all its members. Help from outside and gathering of available information is also important [8, p. 95]. Help to families in coping with precarious life situations is offered within the health care system, the educational system, the social care system and the system of hobby or other social organizations. Specifically, it is mediated
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by specialized consulting offices, self-aid associations for citizens with various kinds of handicap, friendship clubs of parents of children with health problems or specific diseases, pedagogical-psychological consulting offices, family consulting offices, etc. [22, p. 26]. Help to families should be all-embracing. It should focus on mobilizing and use of internal family resources and help in obtaining support from external resources [9, p. 29]. The goal of all specialized services should be the effort to identify and help develop existing family strengths and potential so that the family can be autonomous [23, p. 238]. Potential may remain unused until the family seeks advice from specialists. Adopting certain new stress coping strategies supports the comfort of individual family members as well as the overall positive atmosphere in the family. The whole family becomes stronger, more resistant and able to cope better with specific problems [9, p. 77–8]. At present nursing care also deals with family care. Children's nurses should respect and support the strengths of the family, establish mutual positive relationships and develop collaboration with families [24, p. 153]. Nursing personnel should as indicated by our survey, be able to help moderate not only physical problems, but also the mental consequences of a child's disease by helping to reduce parental stress and concerns; in particular where parents have a lower level of education, in families with child chronic celiac disease, diabetes mellitus and juvenile rheumatoid arthritis. The main role of the nursing team is to identify stress factors and to support the child and the family in adopting constructive methods of facing them. The most suitable period for these psychological and nursing interventions is the initial stage of the disease after diagnosis. Without nursing help, the family may fall into crisis and its members may try unsuitable manners of coping which can be harmful for short-term or long-term family adaptation. Nonetheless, the support in later periods is of high value for all family members as well [10, p. 1]. A childrens' nurse should remember to inform parents that it is suitable for families with a child's chronic disease to use three main sources of support: professional support, family or relative support and the support of self-aid groups. Many parents find invaluable the aid from families with a similar problem. For this purpose, specific intervention programmes for families with ill children should be supported. In the world there are effective programmes focusing on the support to families in coping with a child's chronic disease [19, p. 159; 25, p. 7]. In the Czech Republic there are organizations which offer help to families with ill children. One of them is the Association for the Help to Chronically Ill Children. The main goal of this Association is to contribute to the improvement of life of chronically ill children and their families by means of educational programmes, free time activities, supplementary treatment procedures, social gatherings and sharing experiences. The goal is to strengthen the physical as well as mental health of the ill children with the vision of gradual integration of these children in to the healthy population. For the family to be able to cope with the changed situation and adapt well to the disease, it is important not to deny their disease but to try to adequately adjust to it. Both parents and if possible also their siblings, should be involved in the care of an ill child. It is good for the family to find common interests and activities where the disease has little or no influence [4, p. 118].
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Even if troubles are really substantial, there is always a way to ensure at least some relief. Problems or troubles are overcome easier in the family where all members support one another, are united and approach life with humour [11, p. 16–7].
Conclusion The main goal of the survey was to assess how families with a chronically ill child coped with stress situations and to map factors which were involved in coping with stress in these families. Within the whole surveyed cohort, the parents of ill children achieved a slightly above-average value in the average total score, which points to the adaptive behaviour of these families. The use of internal coping strategies (the interaction of an individual towards the family and the ways in which the family copes with stress among its members) significantly exceeded the use of external coping strategies (the interaction of the family towards social environment and the ways in which the family copes with external problems and demands). The most frequently used strategy was reframing or redefining the stress event as a more manageable one. The most adaptive behaviour in coping with stress was identified among parents of children with bronchial asthma, atopic eczema, celiac disease and juvenile rheumatoid arthritis. More adaptive coping mechanisms are more frequently used under stress by parents with a higher level of education compared to parents with a lower level of education. The results of our research indicate that it is necessary for professional nursing care to be focused not only on the child, but also on the family; to direct interventions especially on families with children suffering from chronic celiac disease, diabetes mellitus, juvenile rheumatoid arthritis and epilepsy or families where children suffer from more diseases and families where parents have a lower level of education.
Conflict of interest No conflict of interest.
references
[1] Langmeier J, Krejčířová D. Vývojová psychologie. Praha: Grada; 2006. [2] Satirová V. Kniha o rodině. Praha: Práh; 2006. [3] Fitznerová I. Máme dítě s handicapem. Praha: Portál; 2010. [4] Matoušek O. Rodina jako instituce a vztahová síť. Praha: Sociologické nakladatelství; 2003. [5] Matějček Z. Rodiče a děti. Praha: Avicenum; 1989. p. 335s. [6] Vágnerová M. Psychologie pro pomáhající profese. Praha: Portál; 2008. [7] Matějček Z, Dytrych Z. Děti, rodina a stres: vybrané kapitoly z prevence psychické zátěže u dětí. Praha: Galén; 1994. [8] Paulík K. Psychologie lidské odolnosti. Praha: Grada; 2010. [9] Sobotková I. Psychologie rodiny. Praha: Portál; 2007. [10] Theofanidis D. Chronic illness in childhood: psychosocial adaption and nursing support for the child and family. International Journal of Nursing Research and Review 2007;1(2):1–9.
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[11] Colorosová B. Krizové situace v rodině: Jak pomoci dětem překonat smrt blízkého člověka, nemoc, rozvod a traumata adopce. Praha: Ikar; 2008. [12] ÚZIS. Činnost zdravotnických zařízení ve vybraných oborech léčebně preventivní péče 2011; 2012, Available from: http://www.uzis.cz/publikace/cinnostzdravotnickych-zarizeni-ve-vybranych-oborechlecebne-preventivni-pece-2011 [online] [cit. 2012-10-03]. [13] Mokkink LB, van der Lee JH, Grootenhuis MA, Offringa M, Heymans HS. Defining chronic diseases and health conditions in childhood (0–18 years of age): national consensus in the Netherlands. European Journal of Pediatrics 2008;167(12):1441–7. [14] McCubbin HI, Olson DH, Larsen AS, et al. Family crisis oriented personal evaluation scales F-COPES. In: Fisher J, Corcoran J, editors. Measures for clinical practice: a sourcebook. New York: Oxford University Press; 2000. p. 294–7. [15] Lemermanová SA. Psychosociální aspekty dětské onkologie: Dítě a rodina Bakalářská práce. České Budějovice: Jihočeská univerzita v Českých Budějovicích. Zdravotně sociální fakulta; 2007. [16] McCubbin HI, Thompson AI, McCubbin MA. Family assessment: resiliency, coping and adaptation: inventories for research and practice. Madison, WI: University of Wisconsin Publisher; 1996.
[17] Luther EH, Canham DL, Cureton VY. Coping and social supports for parents of children with autism. Journal of School Nursing 2005;21(1):40–7. [18] Hatzmann J, Maurice-Stam H, Heymans HSA, Grootenhuis MA. A predictive model of health related quality of life of parents of chronically ill children: the importance of caredependency of their child and their support system. Health Quality of Life Outcomes 2009;7:72. [19] Nuutila L, Salanterë S. International pediatric column. Children with a long-term illness: parents' experiences of care. Journal of Pediatric Nursing 2006;21(2):153–60. [20] Tak RY, McCubbin M. Family stress: perceived social support and coping following the diagnosis of a child's congenital heart disease. Journal of Advanced Nursing 2002;39(2):190–8. [21] Rieger A, McGrail JP. Coping humor and family functioning in parents of children with disabilities. Rehabilitation Psychology 2013;58(1):89–97. [22] Klégrová A, Zelená M. Podpora rodiny. Praha: Vzdělávací institut ochrany dětí; 2006. [23] Sobotková I. Rodinná resilience. Československá psychologie 2004;48(3):233–46. [24] Sikorová L. Potřeby dítěte v ošetřovatelském procesu. Praha: Grada; 2011. [25] Newton K, Lamarche K. Take the challenge: strategies to improve support for parents of chronically ill children. Home Healthcare Nurse 2012;30(5):E1–8.
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Available online at www.sciencedirect.com
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Original research article
Coping strategies of family with a chronically ill child Lucie Sikorová *, Markéta Polochová University of Ostrava, Faculty of Medicine, Department of Nursing and Midwifery, Czech Republic
article info
abstract
Article history:
Any childhood disease is stress for parents or other carers. The goal of this survey was to
Received 11 June 2013
assess what coping strategies are used in families with a chronically ill child to cope with the
Accepted 18 October 2013
resulting stress situations. The examined cohort consisted of parents of children suffering
Available online 4 February 2014
from a selected chronic disease (diabetes mellitus, bronchial asthma, juvenile rheumatoid
Keywords:
specialized paediatric out-patient's departments in Ostrava hospitals. The total number of
Stress
respondents was 162 parents (122 mothers and 40 fathers). Chronically ill children in the
arthritis, atopic eczema, celiac disease, epilepsy, and thyroid gland disease), and attending
Chronic disease
parents' cohort included 80 boys and 82 girls. Data were collected by means of the quanti-
Child
tative cross-sectional survey method. The main research method was an F-COPES ques-
Coping
tionnaire (Family Crisis Oriented Personal Evaluation Scales). Stress in the family related to
F-COPES
the disease of a child, was felt by 95 (59%) respondents of the cohort. The perception of stress by parents differed significantly ( p < 0.01) according to the kind of chronic disease (mostly the parents of children suffering from celiac disease, juvenile rheumatoid arthritis and diabetes mellitus). It followed from the answers of respondents that they most frequently applied internal coping strategies to cope with problems – the redefinition of a stressful event as a more manageable one and the acceptance of stress by moderating reactivity, avoidance or passivity. In the use of coping strategies, no significant difference was found depending on the sex of parents, their age, the duration of the disease, the sex of the chronically ill child or the number of siblings. Unlike families with a single parent, complete families used their closer social surroundings significantly more ( p = 0.046) for help in coping with stress, and thus they were distinguished by a more adaptive behaviour mechanism, similar to parents with a higher level of education. # 2014 Published by Elsevier Urban & Partner Sp. z o.o. on behalf of Faculty of Health and Social Studies of University of South Bohemia in České Budějovice.
Introduction The existence of a chronic disease is always connected with stress both for the ill persons themselves, and for their closest relatives. In the case of an ill child, the stress, concerns or
problems increase considerably, and are felt especially by the parents and the child's closest family. Chronic diseases proceed less sharply than acute ones but their symptoms are present more or less permanently. Many diseases have alternating periods when the ill person feels quite well and symptoms are hardly apparent, and periods when the
* Corresponding author at: Syllabova 19, 703 00 Ostrava-Zábřeh, Czech Republic. E-mail address: [email protected] (L. Sikorová). 1212-4117/$ – see front matter # 2014 Published by Elsevier Urban & Partner Sp. z o.o. on behalf of Faculty of Health and Social Studies of University of South Bohemia in České Budějovice. http://dx.doi.org/10.1016/j.kontakt.2014.01.002
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condition sharply worsens. A child's chronic disease threatens their emotional and social development; and handicaps them: in education, due to frequent absence from school; in the selection of occupation due to various health limitations; and in friendships and peer relationships, due to the frequent disability or absence from play activities [1, p. 278]. In general, ill children are often exhausted, less resistant to stress, are more frequently absent from school and are limited in some activities, etc. As Satirová states [2, p. 208], life with a healthy child, although joyful, also brings about stress and various worries. When a child falls ill, the stress, worries or problems increase considerably [3, p. 51]. A disease or its worsening, causes frustration to the members of the family, affects them in a negative way, limits their lifestyle and prospects. The family must often revaluate its previous lifestyle, change plans and goals and correct its previous view of the future [4, p. 117–8]. Families with an ill child are subject to many dangers which can influence their internal cohesion more easily [5, p. 279]. Messing up the family system by such stress can result in family dissolution, but on the other hand, it can strengthen internal family relationships when the family accepts the illness as a part of life, as their common task [6, p. 104]. In the case of child disease, parents particularly face a difficult task in coping with precarious situations. How they cope with specific problems and stress associated with the disease of the child also significantly affects the child, because parents are an example for the child who adopts their attitudes, opinions and feelings. The manner in which parents respond to stress, how they work with it and to what extent they manage it, co-determines how the situation will also be stressful for the child [6, p. 101]. It is very important for all family members and particularly for the child, that the parents and all the persons involved, cope with the current situation, and as far as possible live a normal satisfying life [7, p. 37]. Coping with stress depends on the respective processes which run in a stress situation. All strategies used in coping with precarious situations have the identical goal of helping the person to maintain an acceptable level of mental equanimity. Methods of coping (coping strategies) can differ and can have different effects [6, p. 85]. Coping is an active knowledgeable manner of coping with stress. It is used in cases of above-limit or sub-limit stress with regard to the circumstances of an individual when greater effort must be made to cope with it [8, p. 79]. Strategies for coping with such stress include the use of the nearest social support network, the search for spiritual support, the redefinition of a stress event, and the search for sources of help in society (e.g. civic associations, self-aid organizations, social and health services). Researches dealing with stress and coping with it in the family are not as extensive as studies focusing on stress and coping with it by an individual [9, p. 77]. If a nurse is to help in coping with stress to families with a chronically ill child, common ways of family coping with stress must be identified and families which are most threatened by maladaptation must be identified. Statistical data on the occurrence of chronic diseases in children are alarming. Epidemiological studies from abroad show that one in ten children up to the age of 15 suffers from a chronic disease [10, p. 1]. Colorosová [11, p. 61] includes
asthma, allergy, arthritis, diabetes, epilepsy and a tumour disease in the six major current chronic diseases of the present. According to the Institute of Health Information and Statistics of the Czech Republic [12, p. 35–9] the most frequent chronic diseases suffered by children from 0 to 18 (or 0–19 in the Czech Republic) are diabetes mellitus, epilepsy, atopic eczema and bronchial asthma. All the aforementioned diseases are connected with frequent contact with physicians, the long-term use of drugs and permanent restricting of the child's natural activities and needs. The goal of the survey was to assess how families with a chronically ill child cope with stress situations. Furthermore, the goal was to determine whether the selected variables (the character of the disease and the characteristics of parents and children) influence coping with stress in the family with a chronically ill child.
Materials and methods The surveyed cohort consisted of parents of children with one of the selected chronic diseases from a list: diabetes mellitus, bronchial asthma, juvenile rheumatoid arthritis, atopic eczema, celiac disease, epilepsy, and thyroid gland disease attending specialized children out-patient units of Ostrava hospitals, i.e. the Faculty Hospital Ostrava, the Municipal Hospital Ostrava and the Vítkovice Hospital in Ostrava. The total number of respondents was 162 parents, of which the majority (75%) were mothers of the ill children. The definition of a chronic disease in childhood is not uniform in the literature, but the present study understands it as a disease which must meet the following criteria: its occurrence at the age of 0–18; its diagnosis is based on medical scientific knowledge with the use of a valid method or tool; the disease is incurable or highly resistant to treatment, and it persists for more than three months, there is a presumed high probability of persistence for more than three months, acute symptoms have occurred three times and more times during the previous year: and they are likely to recur. The criteria were set by a team of specialists from the Netherlands [13, p. 1444] on the basis of a consensual approach. The data collection method was the quantitative crosssection survey. The main research tool was the F-COPES (Family Crisis Oriented Personal Evaluation Scale) questionnaire which was one of the diagnostic methods published in ‘‘Family assessment: Resiliency, coping and adaption – inventories for research and practice’’ together with an extensive manual of test methods focusing on the operation of the family system under stress. The questionnaire itself was elaborated in 1981 by McCubbin et al. [14, p. 294–7] and the use of this assessment tool for research purposes was approved by the author of the tool. The Cronbach's alpha coefficient for individual sub-scales ranges from 0.64 to 0.84, and the authors of the questionnaire state the Cronbach's alpha (a) of 0.86 for the whole tool. Its goal is to identify strategies of problem solutions and behavioural strategies used by the family in difficult situations. The questionnaire was translated from the English original by two independent translators, the versions were compared and the final Czech version was translated to English and consequently to Czech. The final form of the questionnaire was compared
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with the version published in Czech by Lemermanová [15, p. 118]. According to Sobotková [9, p. 79] the questionnaire accepts criteria of cultural sensitivity within the social-cultural context. The questionnaire contains 30 items which are divided into five subscales (except for item 18 which is not included in any subscale).
Subscales
I.
II.
III. IV.
V.
The use of the nearest social support network – includes 9 items which measure the ability of the family to actively gain social support from relatives, friends, neighbours and the wider family. The emotional-cognitive restructuring of the stress situation (also called ‘‘reframing’’) – 8 items which evaluate the ability of the family to redefine stressful events to be better manageable. The search for spiritual support – 4 items focusing on the ability of the family to obtain spiritual support. The family mobilization to accept help – 4 items which determine the ability to find sources of help in the society and also the ability to accept help from such sources (selfaid groups, civic associations, consulting or health services, etc.). The inactive problem solution (also called ‘‘passive evaluation’’) – 4 items which evaluate the ability to accept problematic issues by moderating the reactivity.
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only completed secondary education (47%). Complete families were most frequently represented in the monitored cohort (70%). Families, in which the ill child is the only child, were 43 families (27%), 88 children have at least one sibling (54%) and the other children have more than one sibling. The chronically ill children in the parental cohort included 80 boys (49%) and 82 girls (51%). According to age categories, the group of children at the younger school age was the highest number (81 children, 50%). Another 53 children (33%) were at the older school age and the smallest group of 28 children (17%) were at the pre-school age. The most common disease suffered by the group surveyed was diabetes mellitus – 31 children (19%). The second most frequent disease was epilepsy – 26 children (16%). Children often suffered from more than one disease: 23 children (14%) in our cohort. Besides the combination of the selected diseases, this category also included other diseases in combination with some of the selected diseases; these included haemophilia, child cerebral palsy, chronic intestinal inflammation, and tumour diseases. 20 children suffered from atopic eczema, 18 children from celiac disease, 17 from bronchial asthma, 15 from thyroid disease and 12 children from juvenile rheumatoid arthritis. The average term of the disease was 5.24 years.
Stress in the family
Results
Stress in the family in relation to the child disease, was felt by 95 respondents (59%) of the cohort. Stress perception by the family differed ( p < 0.01) depending on the kind of disease (Chart 1). Almost all parents (94%) of children with celiac disease perceived the chronic disease of their child as a stress. A high percentage of disease evaluation as a stress also showed with juvenile rheumatoid arthritis (83%) and with diabetes mellitus (81% of parents). Parents who evaluated the child's disease as a stress consequently selected areas where they felt this stress. Many of them stated more than one stressful area. Of the total number of 95 parents, the majority felt stress in the area of spending leisure time – 45 parents (47%), in the area of attending school/kindergarten – 41 parents (43%), problematic nutrition of the child – 39 parents (41%), problems in their employment (32%) and in the family budget (29%). Stress in the family can of course, also be related to a range of problems. The majority of parents, including those who did not feel stress in the family, perceive a higher occurrence of problems in relation to the disease. Many parents stated more than one current problem they had to cope with; most frequently they were was financial issues; 48 parents (30%). In contrast, 37 parents of the cohort reported no problem (23%). More than 20% of parents reported problems with catering at school or kindergarten, and nearly the same number of parents stated that they had to address other problems as well. The following problems were mentioned most frequently:
The total number of respondents included 162 parents of ill children (122 women and 40 men). Most parents were at the age of 31–40 (60%), the age category above 40 consisted of 45 parents (28%). The least represented age category was up to 30 years (n = 19), which is 12% of the cohort (the mean was 37 years: max. 56; min. 24 years). The majority of parents had
– fluctuations in blood sugar and thus the mood of the child; – occasional failure to adhere to the regime by the child; – permanent need to check the child, the necessity to be always alert – problems with supervision; – problems related to school or kindergarten – the necessity to accompany the child at school activities, insulin application;
Each of these individual items represents the specific behaviour of the family. The level of use of individual ways of behaviour in families is determined on the basis of answers of respondents on the five-point Likert's scale (1 = never, 5 = always). Ways of behaving are further divided into two basic coping levels where items within subscales I, III and IV belong to external coping strategies and items of subscales II and V belong to internal coping strategies. F-COPES can be evaluated in total or within subscales. The final total score ranges between 30 and 150, where the highest score means the more adaptive behaviour of families in coping with the stress situation [16, p. 455–61]. The F-COPES questionnaire was supplemented by items mapping the social-demographic parameters of respondents. The data obtained were processed in Microsoft Excel 2007 and consequently analysed by means of OpenEpi, a statistic programme. To reveal the relationships between socialdemographic characteristics and the evaluated items of the questionnaire, Fisher's exact test, t-test for two selections, x2 test and the ANOVA – the analysis of variance – were used. Statistic tests were evaluated with the statistic significance a = 0.05 (5%).
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Chart 1 – Stress in families with chronically ill child depending on the kind of child's disease.
– coping with free time activities – travelling, sport; – mental stress, the non-equanimity and helplessness of parents; – obesity of the child in relation to the disease and drugs, etc.
Coping strategies The total score of the F-COPES questionnaire ranges between 30 and 150, where the highest score means more adaptive behaviour of families in coping with the stress situation. The average score of respondents within the entire surveyed cohort was 90.09, which means an average value of the total possible score. None of the respondents achieved the possible maximum or minimum (max. 121, min. 58). The first subscale consists of 9 items showing specific behaviour of the family related to coping with stress in cooperation with the family and the nearest social surroundings. A score of 9–45 could be achieved within the subscale. The average achieved value in this subscale was 26.04 (Table 1). It is obvious from the percentage distribution of individual selected items that respondents most frequently
answered ‘‘sometimes’’, which shows neither significant use, nor significant non-use of strategies focused on the use of the nearest social support. However, according to average item scores families most frequently share their problems with relatives. The second subscale of redefining the stress event as a more manageable one (reframing) contains 8 items. The score here ranges between 8 and 40 and the average achieved value was 30.52. The average score of an individual proves it was the most frequently used strategy in the family. According to average item values, the obviously most used styles were: coping with stress – the determination to address all occurring problems (4.27) – and family faith that it would cope with its own problems (4.12). The third subscale focused on the ability of the family to obtain spiritual support (4 items). The score here ranges between 4 and 20. The average score of parents was 8.09. This was a less frequently used strategy by parents. The behaviour oriented to faith in God was most frequently used within this subscale in coping with stress according to the average item score (2.87). The fourth subscale focuses on the ability of the family to actively search for help in society and at the same time the ability to accept help and use it efficiently. This subscale includes four
Table 1 – Subscale score of the F-COPES questionnaire. Characteristics of F-COPES questionnaire
Average Minimum Maximum SD Average item score
Total score
90.09 58 121 10.99 3.00
Subscale score I
II
III
IV
V
26.04 11 45 6.07 2.89
30.52 20 40 4.37 3.82
8.09 4 19 4.69 2.02
9.94 4 20 3.06 2.49
12.49 6 20 2.36 3.12
I – the use of the nearest social supportive network; II – reframing; III – the search for spiritual support; IV – family mobilization for help acceptance; V – passive evaluation.
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Table 2 – The comparison of average F-COPES scores depending on parents' education. Parents' education
Lower Higher Total p-Value
F-COPES score Total
I
II
III
IV
V
82.32 92.15 90.09 0.000
23.24 26.79 26.04 0.002
30.06 30.65 30.52 0.469
5.97 8.65 8.09 0.000
8.76 10.26 9.94 0.010
11.71 12.70 12.49 0.029
I – the use of the nearest social supportive network; II – reframing; III – the search for spiritual support; IV – family mobilization for help acceptance; V – passive evaluation.
questions. It is obvious on the basis of the value of the average item score (3.44) that the majority of families look for help in offices of general practitioners. The second most frequently used strategy is the search for advice from other families which have coped with similar problems (2.78). In contrast, many families do not use the professional consultancy and assistance of social offices, which is proved both by the lower average item score, and the percentage representation of respondents in the ‘‘never’’ answer (51% and 48%). The fifth subscale, focusing on the inactive addressing of problems by the family, includes four items. These are: the ability of the family to accept problematic issues; by moderating the reactivity to stress; avoiding the stress or passively responding to stress. The range of the possible score was 4–20. The average score achieved by parents in this scale was 12.49. The reverse numeric value was used in these items, which means the lowest average item score indicates the highest use of this inactive coping strategy. The most frequently used strategy within this subscale was watching TV (2.81) and relying on the fact that the problem will settle itself in the course of time (2.85). It followed from the answers of the respondents that, when coping with problems, internal coping strategies are used more frequently, which include subscales II and V, with the average value per item describing the behaviour of the family of 3.58. Families significantly less frequently use the external coping strategies, which include subscales I, III and IV, the average value of which per item describing the behaviour of the family only was 2.59. Minimum differences appeared in average final values of FCOPES depending on the sex of parents ( p = 0.167). The biggest
differences appeared in subscale I determining the ability of the family to actively obtain social support, be it from the family, friends or any persons close to the respondent. A statistical significance ( p = 0.048) was confirmed in this subscale which showed that women are more oriented to the search for help from their close relatives. No significant difference in the use of coping strategies was found between younger (up to 30) and older (above 30) parents ( p = 0.783). The statistically significant difference was found in the use of coping strategies depending on the level of the parents' education. Parents with lower education (elementary, apprenticeship) coped with stress in a more difficult way than parents with higher education at all subscales except for subscale II – reframing (Table 2). Another important factor which can influence coping with stress by the family with a chronically ill child is the type of the chronic disease. The research cohort was divided according to the presence of 8 types of chronic diseases including an item containing a combination of diseases. Of the represented 8 types of diseases, the above-average score, i.e. more than 90 points within the total score, only appeared in half. More adaptive behaviour under stress was identified in families of children with bronchial asthma (97.53), atopic eczema (95.60), celiac disease (96.56) and juvenile rheumatoid arthritis (91.33) ( p < 0.001). The subscale comparison showed two similar coping strategies for parents of children with all the aforementioned diseases in the field of reframing and the use of the passive approach (subscales II and V). As can be seen in Table 3, the close social surroundings were used for coping with stress most frequently by parents of children with bronchial asthma, the least frequently with thyroid gland
Table 3 – The comparison of average F-COPES scores depending on the type of chronic disease. Child's disease
Diabetes mellitus Asthma Atopic eczema Celiac disease Epilepsy Thyroid gland disease Juvenile rheumatoid arthritis Combination Total p-Value
F-COPES score Total
I
II
III
IV
V
84.81 97.53 95.60 96.56 86.96 82.13 91.33 89.91 90.09 0.000
23.03 31.18 28.40 28.17 24.04 22.87 28.50 25.65 26.04 0.000
30.29 31.65 30.25 30.11 30.77 29.87 28.83 31.61 30.52 0.656
6.35 9.06 12.40 10.50 6.58 5.60 7.92 7.48 8.09 0.000
9.00 10.76 10.00 11.67 10.58 8.47 10.58 9.13 9.94 0.016
13.16 11.71 11.20 12.83 12.35 12.33 12.75 13.13 12.49 0.076
I – the use of the nearest social supportive network; II – reframing; III – the search for spiritual support; IV – family mobilization for help acceptance; V – passive evaluation.
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disease. Using spiritual support as a coping strategy was mostly reported by parents of children with atopic eczema, the least frequently by parents of children with thyroid gland disease. The wider social network including general practitioners was used by the majority of parents of children with celiac disease and the least frequently by parents of children with thyroid gland disease (Table 3). The chronic diseases differ not only in the type of disease, but also in its duration. To be able to determine the relation between the duration of the disease and coping with stress, the cohort was divided to two categories. One of them included diseases lasting for up to two years inclusive, the other lasting for more than two years. Within the total score, a higher score (i.e. a better coping strategy) was achieved by parents of children with a shorter term of the disease (up to two years) compared to parents of children with a longer term of disease (more than two years). However, the difference was insignificant, even in individual subscales and in the total score ( p = 0.222). According to the results of F-COPES, complete families significantly more frequently used it close social surroundings for help in coping with stress ( p = 0.046) compared to families with a single parent. No significant difference was noted in the use of coping strategies between families with children of different sex, different age or different number of siblings.
Discussion The goal of the survey was to assess how families with a chronically ill child coped with stress situations and to map factors which influenced coping with stress. With regard to the slightly above-average score in coping with stress obtained from the F-COPES questionnaire the behaviour of families can be evaluated as adaptive. Results show that the use of internal coping strategies significantly exceeded the use of external coping strategies. The most frequently used coping strategy was reframing or the ability to redefine onerous situations so that they were more manageable for the family. In contrast, the least used strategy was the external strategy focused on a search for spiritual support. Almost identical results were found in the study focusing on coping with stress in the family in the care for an autistic child [17, p. 44–5] where families having an autistic child were compared with a control cohort of families with healthy children. The study used the same questionnaire. The most frequently used coping strategies was reframing and obtaining social support. In contrast, the least used strategy was spiritual support. The results of the study are also in harmony with the study of the quality of life of the parents [18, p. 72] which confirmed the importance of social support for coping with parental stress. Social support helps in coping with stress situations but does not solve these situations for an individual. Depending on the type of chronic disease, better coping is apparent with parents of children with bronchial asthma, atopic eczema, celiac disease and juvenile rheumatoid arthritis although Nuutila and Salanterë [19, p. 158] state that despite various diagnoses there are some similarities in the experience of parents in coping with a long-term illness of a child. Parental responses to stress can change depending on
the progress of the child's disease. If the child's condition is stable or even improves, it acts positively on the family. In the opposite case, when the disease worsens, despair increases in parents. Uncertainty and concerns for the health of the child can result in irrational activities or rash reactions of the parents. However, any activity shown to be effective helps parents and the whole family overcome stress. Our cohort compared two family categories with different durations of the disease. Slight differences appeared between these families in average achieved values but the statistic significance was not confirmed within the total score. Similar results were achieved in the research of coping with stress in a family with a child with a congenial heart disease, where according to the characteristics of the disease (seriousness, age at diagnostics, duration) no differences appeared in the field of family stress. The authors explain the situation by the fact that most cases did not represent a developed form of the disease, but rather an asymptomatic period with short duration [20, p. 195]. Our survey did not consider the fact of seriousness of the disease; therefore results should be considered as orientation or as being indicative. Whether the family is complete, incomplete or complemented does not decide on its functionality or ability to cope with stress. The structure and arrangement of the family do not matter, but what does matter is what processes and relationships are occurring inside the family [9, p. 72]. This thesis was also confirmed in our cohort where no statistically significant differences in the total score were found after comparing the results of coping with stress between families with different structures. As in our survey, which resulted in the difference in coping with stress between parents with a higher and lower education, Rieger and McGrail [21, p. 89] found on the basis of a study focused on coping with stress and family functioning of parents of handicapped children that the level of education had a significant predictive influence on the coherence and flexibility of the family. Our survey mostly included children of a younger school age group; however, there were fewer children of an older school age and the smallest number children were of preschool age. There were slight differences in the field of coping with stress between parents of differently aged children. The statistical significance of these differences however was not confirmed within the total score. The same result was also achieved in the research of coping with stress in a family with a child with congenital heart disease, where according to the characteristics of children (sex and age) there were no differences in the field of coping with stress by parents [20, p. 195]. Crises can take many forms. In relation to our parents (or the whole family) it especially occurs at the time of the revelation of the disease and in the case of the sudden or lifethreatening worsening of their condition. Besides the necessity to mobilize internal resources in these situations there is a need to have someone close and to feel safe, which may be achieved for the family by coherence of all its members. Help from outside and gathering of available information is also important [8, p. 95]. Help to families in coping with precarious life situations is offered within the health care system, the educational system, the social care system and the system of hobby or other social organizations. Specifically, it is mediated
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by specialized consulting offices, self-aid associations for citizens with various kinds of handicap, friendship clubs of parents of children with health problems or specific diseases, pedagogical-psychological consulting offices, family consulting offices, etc. [22, p. 26]. Help to families should be all-embracing. It should focus on mobilizing and use of internal family resources and help in obtaining support from external resources [9, p. 29]. The goal of all specialized services should be the effort to identify and help develop existing family strengths and potential so that the family can be autonomous [23, p. 238]. Potential may remain unused until the family seeks advice from specialists. Adopting certain new stress coping strategies supports the comfort of individual family members as well as the overall positive atmosphere in the family. The whole family becomes stronger, more resistant and able to cope better with specific problems [9, p. 77–8]. At present nursing care also deals with family care. Children's nurses should respect and support the strengths of the family, establish mutual positive relationships and develop collaboration with families [24, p. 153]. Nursing personnel should as indicated by our survey, be able to help moderate not only physical problems, but also the mental consequences of a child's disease by helping to reduce parental stress and concerns; in particular where parents have a lower level of education, in families with child chronic celiac disease, diabetes mellitus and juvenile rheumatoid arthritis. The main role of the nursing team is to identify stress factors and to support the child and the family in adopting constructive methods of facing them. The most suitable period for these psychological and nursing interventions is the initial stage of the disease after diagnosis. Without nursing help, the family may fall into crisis and its members may try unsuitable manners of coping which can be harmful for short-term or long-term family adaptation. Nonetheless, the support in later periods is of high value for all family members as well [10, p. 1]. A childrens' nurse should remember to inform parents that it is suitable for families with a child's chronic disease to use three main sources of support: professional support, family or relative support and the support of self-aid groups. Many parents find invaluable the aid from families with a similar problem. For this purpose, specific intervention programmes for families with ill children should be supported. In the world there are effective programmes focusing on the support to families in coping with a child's chronic disease [19, p. 159; 25, p. 7]. In the Czech Republic there are organizations which offer help to families with ill children. One of them is the Association for the Help to Chronically Ill Children. The main goal of this Association is to contribute to the improvement of life of chronically ill children and their families by means of educational programmes, free time activities, supplementary treatment procedures, social gatherings and sharing experiences. The goal is to strengthen the physical as well as mental health of the ill children with the vision of gradual integration of these children in to the healthy population. For the family to be able to cope with the changed situation and adapt well to the disease, it is important not to deny their disease but to try to adequately adjust to it. Both parents and if possible also their siblings, should be involved in the care of an ill child. It is good for the family to find common interests and activities where the disease has little or no influence [4, p. 118].
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Even if troubles are really substantial, there is always a way to ensure at least some relief. Problems or troubles are overcome easier in the family where all members support one another, are united and approach life with humour [11, p. 16–7].
Conclusion The main goal of the survey was to assess how families with a chronically ill child coped with stress situations and to map factors which were involved in coping with stress in these families. Within the whole surveyed cohort, the parents of ill children achieved a slightly above-average value in the average total score, which points to the adaptive behaviour of these families. The use of internal coping strategies (the interaction of an individual towards the family and the ways in which the family copes with stress among its members) significantly exceeded the use of external coping strategies (the interaction of the family towards social environment and the ways in which the family copes with external problems and demands). The most frequently used strategy was reframing or redefining the stress event as a more manageable one. The most adaptive behaviour in coping with stress was identified among parents of children with bronchial asthma, atopic eczema, celiac disease and juvenile rheumatoid arthritis. More adaptive coping mechanisms are more frequently used under stress by parents with a higher level of education compared to parents with a lower level of education. The results of our research indicate that it is necessary for professional nursing care to be focused not only on the child, but also on the family; to direct interventions especially on families with children suffering from chronic celiac disease, diabetes mellitus, juvenile rheumatoid arthritis and epilepsy or families where children suffer from more diseases and families where parents have a lower level of education.
Conflict of interest No conflict of interest.
references
[1] Langmeier J, Krejčířová D. Vývojová psychologie. Praha: Grada; 2006. [2] Satirová V. Kniha o rodině. Praha: Práh; 2006. [3] Fitznerová I. Máme dítě s handicapem. Praha: Portál; 2010. [4] Matoušek O. Rodina jako instituce a vztahová síť. Praha: Sociologické nakladatelství; 2003. [5] Matějček Z. Rodiče a děti. Praha: Avicenum; 1989. p. 335s. [6] Vágnerová M. Psychologie pro pomáhající profese. Praha: Portál; 2008. [7] Matějček Z, Dytrych Z. Děti, rodina a stres: vybrané kapitoly z prevence psychické zátěže u dětí. Praha: Galén; 1994. [8] Paulík K. Psychologie lidské odolnosti. Praha: Grada; 2010. [9] Sobotková I. Psychologie rodiny. Praha: Portál; 2007. [10] Theofanidis D. Chronic illness in childhood: psychosocial adaption and nursing support for the child and family. International Journal of Nursing Research and Review 2007;1(2):1–9.
e38
kontakt 16 (2014) e31–e38
[11] Colorosová B. Krizové situace v rodině: Jak pomoci dětem překonat smrt blízkého člověka, nemoc, rozvod a traumata adopce. Praha: Ikar; 2008. [12] ÚZIS. Činnost zdravotnických zařízení ve vybraných oborech léčebně preventivní péče 2011; 2012, Available from: http://www.uzis.cz/publikace/cinnostzdravotnickych-zarizeni-ve-vybranych-oborechlecebne-preventivni-pece-2011 [online] [cit. 2012-10-03]. [13] Mokkink LB, van der Lee JH, Grootenhuis MA, Offringa M, Heymans HS. Defining chronic diseases and health conditions in childhood (0–18 years of age): national consensus in the Netherlands. European Journal of Pediatrics 2008;167(12):1441–7. [14] McCubbin HI, Olson DH, Larsen AS, et al. Family crisis oriented personal evaluation scales F-COPES. In: Fisher J, Corcoran J, editors. Measures for clinical practice: a sourcebook. New York: Oxford University Press; 2000. p. 294–7. [15] Lemermanová SA. Psychosociální aspekty dětské onkologie: Dítě a rodina Bakalářská práce. České Budějovice: Jihočeská univerzita v Českých Budějovicích. Zdravotně sociální fakulta; 2007. [16] McCubbin HI, Thompson AI, McCubbin MA. Family assessment: resiliency, coping and adaptation: inventories for research and practice. Madison, WI: University of Wisconsin Publisher; 1996.
[17] Luther EH, Canham DL, Cureton VY. Coping and social supports for parents of children with autism. Journal of School Nursing 2005;21(1):40–7. [18] Hatzmann J, Maurice-Stam H, Heymans HSA, Grootenhuis MA. A predictive model of health related quality of life of parents of chronically ill children: the importance of caredependency of their child and their support system. Health Quality of Life Outcomes 2009;7:72. [19] Nuutila L, Salanterë S. International pediatric column. Children with a long-term illness: parents' experiences of care. Journal of Pediatric Nursing 2006;21(2):153–60. [20] Tak RY, McCubbin M. Family stress: perceived social support and coping following the diagnosis of a child's congenital heart disease. Journal of Advanced Nursing 2002;39(2):190–8. [21] Rieger A, McGrail JP. Coping humor and family functioning in parents of children with disabilities. Rehabilitation Psychology 2013;58(1):89–97. [22] Klégrová A, Zelená M. Podpora rodiny. Praha: Vzdělávací institut ochrany dětí; 2006. [23] Sobotková I. Rodinná resilience. Československá psychologie 2004;48(3):233–46. [24] Sikorová L. Potřeby dítěte v ošetřovatelském procesu. Praha: Grada; 2011. [25] Newton K, Lamarche K. Take the challenge: strategies to improve support for parents of chronically ill children. Home Healthcare Nurse 2012;30(5):E1–8.