The two main criteria for inclusion into the study were (i) a child with a diagnosis UWS (ICD 10 G 93.80) (synonyms “apallic syndrome”, “vegetative state”, “Wachkoma” or “coma vigile”) and (ii) the family that was living with the child together in the home environment. The exclusion criterion was the age above 18 at the time of the event causing the UWS. Because the respective population is relatively small, in the acquisition phase we contacted families in three German-speaking countries (Germany, Austria and Switzerland). The contacts were initiated through foundations, specialist newspapers, acute hospitals, rehabilitation clinics, self-help groups, hospices, private practices, physiotherapists, intensive care staff, pediatric nursing services, children's networks, special schools, federal associations, trade fairs, and family members of known UWS patients. The very intensive search resulted in a total of one hundred ninety families corresponding to the above inclusion criteria.
190 questionnaires were sent to interested parties, to foundations etc., who passed on them to the families. Thirty questionnaire packages consisting of a cover letter, questionnaires (see below) and an addressed and revised return envelope were answered. Four of them had to be excluded from the study because, contrary to original statements, it was found that the UWS patients were older than 18 at the time point of the event leading to the UWS. Thus the data basis of the present study entails twenty-six UWS families, or 13.7% of the identified population.
To create a control group, one hundred twenty-three randomly chosen families in Germany, Austria and Switzerland, living in the home environment with a healthy child below the age of 24, were contacted. A total of 80 questionnaire packages were sent to families, fifty-two of whom were answered, returned anonymously and correctly. Of these 52, a random selection of twenty-six was used in this study. The conditions of comparability of the two groups were the similar age of the children (UWS and healthy children, respectively), the similar age of the parents who filled in our questionnaires, and that all families were continuously living together. The acceptable alpha error () was set to .05. Assuming a correlation (r) of .50 and the presence of both within- and between-subject interactions, a test strength analysis using the program G * Power 3.0 (Faul et al., 2007) results in an optimal sample size of N = 52.
Many families living together with a UWS child are overburdened and often hypersensitized toward the interests of third parties in their case. Some of them experience strong mistrust against experimental studies seeing themselves and their patients rather as objects to obtain some abstract knowledge form which they do not receive any benefit. They are ruled, perhaps unconsciously and intuitively, by the principle (Kant, 1991/1785) that it should be unethical to use some (ill) human persons just as means to attain some other (even good) end. Recent studies indicate how important is taking the motivational state of disabled children’s mothers in building trustful communication with them (Rafferty et al., 2019). The lack of taking into consideration this specific motivational state may result in “study aversion”, and one may even suppose that this aversion is a cause for the present scarcity of knowledge in the domain.
This was one of the reasons to apply a non-experimental approach. The use of questionnaires in the present study was expected to increase participants’ compliance. When selecting and specifying the design, particular attention was paid to the living conditions of families affected by the UWS of their child. Informal conversations with such families gradually led to the development of a set of adequate questionnaires including both externally constructed tools and an original questionnaire, which focuses in particular on the anamnestic situation of the families affected by UWS.
The first of the hypotheses formulated above requires a comparison between the families living with children with and without UWS. To examine the other hypotheses, further distinctions had to be made within the group of families affected by the UWS of their children. The aim of this analysis was to find out whether families with a higher level of life satisfaction have specific personal abilities that contribute to managing this particular life situation as compared with families with lower satisfaction, and whether there is any link between life satisfaction, the starting point, and the individual characteristics and relationship with one's own children.
The assignment of the manifest variables (indicators) to the theoretical terms is presented below. Life satisfaction is a multidimensional construct, which leads to numerous possibilities of operationalization. To test Hypothesis 1, we selected a methodologically high-quality questionnaire broadly used in the German language area. The questionnaire on life satisfaction (FLZ) of Fahrenberg et al. (2000) includes a personality test as well as the individual assessment of global and area-specific life satisfaction, past and present living conditions, as well as future perspectives. It entails seventy items in ten scales and a total value (FLZ-SUM). The scales health (FLZ-GES), work and occupation (FLZ-ARB), financial position (FLZ-FIN), leisure time (FLZ-FRE), marriage and partnership (FLZ-EHE), relationship with one's own children (FLZ-KIN), one's own person (FLZ-PER), sexuality (FLZ-SEX), friends, acquaintances, relatives (FLZ-BEK) and home (FLZ-WOH) were described by Fahrenberg et al. (2000). Many representatives of the presently investigated population live, due to their particular situation, in atypical conditions regarding their work (scale FLZ-ARB), their marriage and partnership (scale FLZ-EHE) and their relationship with one´s own children (FLZ-KIN). Therefore, in the present study these scales were excluded from the calculation of general life satisfaction (FLZ-SUM).
FLZ has been tested by a factor analysis of the data obtained in a population-representative survey (N = 2870), checked for test quality criteria and normalized. It does not include areas of social attitudes such as satisfaction with politics, society, institutions, parties, churches and so on. Each item is scored from (1 = very satisfied) to (7 = very dissatisfied). There exist norms for gender and seven age groups. The reliability, as assessed by internal consistency (Cronbach's Alpha), was between .82 and .94 (Fahrenberg et al., 2000). Content validity and logical validity of the FLZ was examined by Fahrenberg et al. (2000) based on empirical correlations with self-assessment measures, sociodemographic features, and empirical findings on peer groups (Pavot et al., 1991).
Possible positive (supportive) or negative (burdening by the lack of support) effects of the initial conditions or anamnestic life situation on the general life satisfaction were investigated to test Hypothesis 2. For this sake we have developed a questionnaire on everyday family life with a UWS affected child (FFCv). The development of FFCv (Chadasch, 2011) was originally based on the long-term experience of social and pedagogical contact with affected families and nursing personnel. Due to this primary experience of the cooperation with UWS families, the questionnaire was able to cover the needs of the child in the home environment, the assistance given to the affected family, and the conditions for community life, including links to the general context Life satisfaction. At the same time, it satisfied the criteria of good compliance, comprehensibility, clarity and limited scope of work.
A total of 26 items was formulated. Items 1-6 describe the current life situation and include the areas of residence, the relationship between the respondent and the patient (e.g., parent or sibling), one's own age, the age of the affected child, the home situation of the family (house or apartment, moved there before or after the event), and the time for which the child affected by UWS lives at home. Items 7 and 8 refer to the event that led to UWS (time of the event and etiology, e.g., brain anoxia or birth trauma). Item 9 covers the extent of the care situation of the UWS child and asks which aids belong to the respective child (own room, nursing bed, tracheostomy tube, oxygen supply, respirator, PEG, feeding pump, wheelchair, various aids). In Item 10, the type of support received from families affected by the UWS of their child is broken down into six areas (family doctor, nursing service, social pediatric center, therapist, health insurance, nursing care). Items 11-13 include the duration of family support (day help, night assistance, number of home visits). Items 14-17 focus on emergency situations and external moments experienced by the family affected by UWS of their child (frequency of emergency situations, of external appointments, of hospital stays, and of surgical interventions). Item 18 asks for activities potentially relieving the family (inclusion of the UWS child into the activities of other children). Items 19-21 refer to the systemic effects of UWS on other family members (problems of siblings and parents). Items 22 and 23 are resource-oriented (desires, positive experiences). Item 24 asks for the retrospective evaluation of the emotional situation directly after the event, and items 25 and 26 record the current life satisfaction (changes, current situation).
The questionnaire (Chadasch, 2011) uses closed and semi-open questions. It includes both nominal and ordinal scales, as well as both dichotomous and continuous variables. The semantic and pragmatic understanding of the questions was checked in the pretest. On the basis of theoretical considerations, the answers presented as continuous variables were converted into binary variables referred to as positive (supportive) or negative (deficient, i.e., burdening due to the lack of support) anamnestic basic conditions (Chadasch, 2011). The daily help was rated as positive when it took more than one hour a day and as deficient in the opposite case. Regarding night help, the situation was rated as positive if at least one hour of relief assistance was granted and as deficient if no help was obtained. With the support of the nursing service, the social pediatric center, the health and long-term care funds, a yes-no-coding was decisive for the category positive or deficient. Low age was considered positive because the care for small children does not differ very much between children with and without UWS. In contrast, higher age was considered negative because an older UWS child presents a much larger burden for the family as compared with healthy children of the same age.
Two additional questionnaires were used to empirically investigate the conditions for satisfactory life with a UWS-affected child. The Resource and Self-Management Capability Questionnaire (FERUS) focuses on a person's supportive abilities (Jack, 2007) and serves to validate Hypothesis 4 that addresses the self-management abilities of families with a UWS child. The theoretical basis of FERUS includes such concepts as salutogenesis (Antonovsky, 1979, 1987), self-management (Kanfer and Gaelick-Buys, 1991), self-efficacy (Bandura, 1977) and social support (Sommer and Fydrich, 1989). The questionnaire contains 66 items in seven scales. However, on the basis of his factor analysis Jack (2007) recommended to not include the scales of change motivation (VM) and social support (SU) into the total scale. Thus the sum of the remaining five scales [coping (C), self-observation (SB), self-efficiency (SW), self-verbalization (SV), and hope (H)] yielded the score for the total resources (FERUS).
The answers of the items take place on a Likert scale from (1) "not at all" to (5) "exactly correct". T-values, mean values, standard deviations, confidence intervals, critical differences and scale descriptions are available for interpretation (Scherm, 2002). All scales have a satisfactory to good test-retest reliability (.66 to .86), a good to very good internal consistency (a .86 to .93), and high content validity (Jack, 2007).
The scales for experiencing emotions (SEE) (Behr and Becker, 2004) were used to test Hypotheses 3 and 5. They examine the effects of experienced emotions and their processing by the families with a UWS child. For the time-economic application, 42 items were used to form seven scales based on factors in three optimization phases with N = 456 from Behr et al. (2002) and others involved in the development (Behr and Becker, 2004). The selected scales concern experiencing emotional overload, body-related symbolization, acceptance of one's own emotions, imaginative symbolization, experiencing self-control, experiencing emotion regulation and experiencing the lack of emotion.
This value of general life satisfaction is considered meaningful for assessing a person's self-management abilities. The item formulation was based on the constructs of person-centered personality theory (Rogers, 1959) and the concept of emotional intelligence (Salovey and Mayer, 1990). The internal consistency of the individual scales showed very good to good values ( = .70 to .86). Of the 21 pairwise intercorrelations between the scales, the two highest coefficients were .46 and .42, and the average coefficient was .22. The intercorrelations are, therefore, low enough to regard the scales as independent of each other. Where the scales intercorrelate, this is in line with theory-driven expectations (Behr and Becker, 2004).
SEE scoring permits answer categories from "do not agree" (1) to "completely agree" (5). Exceptions are three items that have a reverse encoding. Reliability measures (Cronbach's Alpha) were .66 and .85 for females and males, respectively. Stability was assessed by the analysis of retest reliability for various time intervals. The results proved a high stability of the scales. This corresponds clearly to the theory-guided interpretation of the underlying constructs of personality traits (Behr and Becker, 2004). For the purposes of validation, the correlation of SEE with various instruments such as Five Factor Inventory (Costa and McCrae, 1992) and Frankfurt self-concept scales (Deusinger, 1982) was examined. The obtained correlations supported the theoretical considerations as well as the convergent and discriminant validity of SEE (Behr and Becker, 2004).
To test Hypothesis 6, we used the scale for relationship with own children (FLZ-KIN) from the questionnaire of life satisfaction (FLZ) described above. The seven items are to be answered on scales ranging from (1) "very satisfied" to (7) "very dissatisfied" and represent the self-assessments of persons who give a subjective account of different experiences and ratings.