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Meeting the needs of siblings of children with cancer.

Brothers and sisters of children with cancer may have emotional difficulties as a result of the changes brought by the diagnosis (Sahler et al., 1994). Recognizing this risk, professionals have offered a variety of strategies to help siblings cope with the experience (Murray, 1995; Sahler & Carpenter, 1989). However, as most siblings have limited resources and autonomy, it is often their parents who determine whether or not a sibling attends any intervention offered. Although some previous studies have sought parents' views on the care of siblings of children with cancer (Sahler et al., 1994), such studies have largely concentrated on parents' observations of changes in their well child, the child's needs, and coping strategies. This study, therefore, considers the issue from an alternative perspective, the parent's views on sibling interventions offered by professionals. This study applied a questionnaire containing both closed and open-ended questions in order to obtain preliminary quantitative and qualitative data in this relatively unexplored area.

Background to the Study

Prior to the initiation of this project, a series of "Sibling Days" was held at Birmingham Children's Hospital. They aimed to provide siblings of child cancer patients with information and psychosocial support and to improve communication between siblings and their parents (Woodhouse, 1996). Despite these days being well evaluated by both the siblings and their parents, they were abandoned due to increasingly poor attendance. The present project aimed to address the issue of poor attendance by asking parents their views on how professionals could help well children cope with the illness.

Literature Review

The incidence and type of adjustment problems in siblings. Brothers and sisters of children undergoing cancer treatment are at an increased risk of psychological problems compared to the siblings of healthy children. In the largest cohort studied (Sahler et al., 1994), siblings of oncology patients were found to have more than twice the number of emotional/behavioral problems as a result of the diagnosis compared to matched controls and the same siblings prior to the diagnosis.

The emotional changes experienced by well siblings vary enormously from child to child. At one end of the continuum, some siblings seem to grow emotionally during the illness, showing insight into the needs of others (Sloper, 2000; Wang & Martinson, 1996) and general improvements in their behavior (Sahler et al., 1994). However, negative changes predominate, with the vast majority of parents reporting changed behaviors such as mood swings, withdrawal, and attention-seeking behavior in their well children (Heffernan & Zanelli, 1997). Psychosomatic symptoms (Zeltzer et al., 1996) and difficulty with behavior and concentration at school (Heiney, Goon-Johnson, Ettinger, & Ettinger, 1990) are common. At the other end of the continuum, the experience may have serious long-term effects (Alderfer, Labay, & Kazak, 2003); some requiring psychiatric intervention (Cain, Fast, & Erickson, 1964).

Siblings' needs and factors affecting their adjustment. When asked, well siblings can often identify their own needs, needs that are sometimes also recognized by their parents. Researchers who have studied such families repeatedly describe the following needs:

* The need for reassurance about the sick child (Evans, Stevens, Cushway, & Houghton, 1992; Faulkner, Peace, & O'Keefe, 1995).

* The need for information (Faulkner et al. 1995; Wang & Martinson, 1996).

* The need for reassurance about the sibling's own health (Wang & Martinson, 1996; Zeltzer et al., 1996).

* The need for relief from guilt (Adams-Greenly, Shiminski-Maher, & Mcgowan, 1986; Madan-Swain, Sexson, Brown, & Ragabr, 1993).

* The need for inclusion and social support (Cunningham, Betsa, & Gross, 1981; Martinson et al., 1990).

Siblings value certain types of social support more than others. Emotional support (e.g., empathy, encouragement, and love) and instrumental support (direct help or material aid) have been rated as more helpful by siblings than informational support or appraisal support (help in examining and interpreting a situation) (Murray, 2001; Murray, 2002).

Investigation has determined that certain controllable factors are associated with better coping in well siblings. These include: better disease-related knowledge (Evans et al., 1992), more family cohesion (Dolgin et al., 1997; Wang & Martinson, 1996), and sibling perception that people care about them (Zeltzer et al., 1996). Links between good adjustment and various age/gender groups (Sargent et al., 1995), the family's socio-economic status (Sahler et at., 1994), the number of siblings in the family (Madan-Swain et al., 1993), and the presence of pre-existing behavioral problems (Sahler et al., 1994) have also been demonstrated, and although such factors cannot be altered by health professionals, they provide clues to the identification of children who will be at particular risk of psychological difficulties on diagnosis.

Professional interventions with siblings. Many attempts have been made by professionals to formulate strategies to meet the needs of siblings. In everyday practice, nurses use a myriad of techniques to help brothers and sisters either directly or through their parents (Murray, 1995; Walker, 1988). More formal interventions have generally been carried out with groups of siblings, which seem to be consistently well evaluated by participants and their parents (Adams-Greenly et al., 1986; Barrera, Chung, Greenberg, & Fleming, 2002; Simms, Hewitt, & Vevers, 2002). Two studies used comparison methods (Heiney et al., 1990; Sahler & Carpenter, 1989), and the latter was able to demonstrate significant improvement in knowledge and parent-reported improvement in mood following the intervention.

No studies examining the issue of attendance at pediatric oncology sibling interventions have been published. Literature from the field of adult oncology suggests that adult patients who are less educated and more recently diagnosed with a malignancy are more likely to attend support groups and that the main reason for non-attendance is the belief that other sources of support are superior (de Bocanegra 1992).

The child sibling is usually dependent on his or her parent(s) for the resources necessary to attend any interventions offered. Research has shown that parents' perceptions of the forms of social support that are helpful to siblings differ from those of the siblings themselves (Murray, 2001; Murray, 2002), with siblings rating help to attend support groups as significantly (p < 0.01) more helpful than parents (Murray, 2001). Parents may lack the necessary resources or may be unwilling/unable to allow their child to attend for several other reasons; for example, a belief that their child is too young to learn about cancer (Titler, Cohen, & Craft, 1990), a preference for other types of support (Williams, 1992), or lack of recognition of the needs of their well child (Craft, Wyatt, & Sandel, 1985).

The parent is, hence, the gatekeeper to professional access to siblings and is also often in control of the non-professional support the sibling receives. Therefore, parental perceptions of the problems and needs of siblings are critical factors in the development of any support strategy for siblings.

Study Aims

The study's aims were:

* To find out from parents their opinions about the needs of siblings and views on the support that already exists for these children.

* To find out from parents their views on a repertoire of proposed methods of improving support for siblings and their willingness and ability to allow their well child to participate in these.

* From the results of the first two aims and an extensive review of the relevant literature, to plan one or more strategies to support siblings.

Method

Ethical approval for the study was gained from the Local Research Ethical Committee. The study sample population was parents of living children who were undergoing or had completed cancer treatment at the study center and who also had a well child or children. Parents whose well child was over the age of 16 years (i.e. adult siblings) were also included. Parents who were considered to be too distressed at the time of the study were excluded. No further exclusions were made.

As no standardized questionnaire addressing the aims of the project was available, a questionnaire was developed. Five members of the multi-professional team, who examined each question for clarity, readability, relevance of content, and any ambiguity, reviewed the questionnaire. The tool was then piloted with six families who met the inclusion criteria. Parents were asked to attempt to complete the questionnaire, noting any problems they experienced. The researcher spent time with individual parents in the pilot group discussing their interpretation of the questions and any alterations that they felt should be made to the content. As a result of these reviews, several changes were made, principally several open-ended questions were changed into fixed-response questions to facilitate data analysis.

The questionnaire consisted largely of fixed response items with 3 open-ended questions to elicit information on parents' reasons for declining to have their child involved in certain activities/interventions, and to give parents the opportunity to provide any other information that they felt was relevant. The questionnaire covered four main areas:

* Demographic details: Relationship of participant(s) to the sick child, the sick child's treatment status (i.e. receiving treatment/completed treatment, inpatient/outpatient), the number and ages of well siblings.

* The parents' views on the support that the family had received so far with reference to their well children.

* Parents acceptability of a range of proposed activities that could theoretically be used to help siblings.

* The parents' views on how able they would be to enable their well child/children (and family) to attend support interventions organized in a variety of ways.

Parents attending Birmingham Children's Hospital Oncology inpatient or outpatient departments during a 6-week period in 1998 were included. In the outpatient department, questionnaires were offered in the "Weighing Room" where the child is assessed on arrival. Questionnaires were offered to all parents of inpatients twice weekly during the study period. All questionnaires were distributed by nursing staff or the researcher. Parents were asked to return the questionnaires to envelopes mounted in inpatient and outpatient areas, or to return the questionnaire to the researcher by mail. Questionnaires were available in English, Punjabi, and Gujurati so as to facilitate responses from the large Asian community. Participants in the study were anonymous and extensive demographic details were not gathered.

Data Analysis

In order to ascertain whether familial characteristics correlated with certain study findings, the demographic details given were compared to the opinions expressed by certain population subgroups. The characteristics of the subgroups and their sizes are detailed in Table 1.

Differences in results between these subgroups were tested for significance using Chi-squared, and where expected values were less than five, the Yates correction was incorporated. (The Yates correction is an adjustment for small sample size to Chi-squared used when only a small amount of data available.) Two questions consisted of multiple parts. The first asked parents if they would be "happy" for the well child to be involved in 10 different activities, and the second asked whether the parent would be able to bring the child to 6 different formats of session. Following advice from a statistician, the number of positive responses to these two subsets of questions was used to create a percentage of positive responses, which became the "Willingness" and "Able to Attend" scores, respectively, for each respondent. Any respondent answering less than half of the questions in any subset was excluded. Differences observed in these scores were analyzed using the Mann Whitney U Test. All results are given as 2-tailed tests as the direction of the association was not predicted.

Demographics of Study Population

One hundred and thirty-five questionnaires were distributed and 86 returned, giving a response rate of 64%. Most questionnaires were completed by one parent (Mothers - 71%, n =58; Fathers - 20%; n = 16). Nine percent (n = 7) were completed by both parents together, with a single questionnaire (1%) completed by a respondent who was described as a "friend."

Seventy-six percent of parents had children still receiving treatment; the children of the remainder had completed treatment. Three-quarters of families had children who were outpatients at the time of the study, the remainder had inpatient children. Approximately half the families had only one well child, the remainder having two or more.

The respondents had a total of 159 well children, age 6 weeks to 26 years, with a mean age of 10.5 years (SD = 5.0). The inter-quartile range was 5.5 to 13.5 years.

Results

Parental beliefs about their well child(ren)'s risk of problems. Fifty percent (n = 41, 95%; confidence interval, 39%-61%) of parents felt that their well child(ren) would have problems as a result of their sick child's illness. Those parents whose sick child had completed treatment were significantly more likely to say that they felt that their well child had not had, nor would not have problems as a result of their sick child's illness ([chi square] = 6.61, p < 0.05).

Views on sibling support received. Only 40% (n = 33) of respondents said that any member of the multidisciplinary team had ever tried to help their well child(ren) (see Table 2). However, when offered, the help was generally (86%, n = 25) seen as useful. Only a quarter of respondents felt that the written information they had been given either for their well child directly, or to advise them on helping their well child(ren) was adequate. One parent commented that she would be willing to pay for such literature. Only 14% felt that the video information provided on this subject was sufficient.

Views on proposed activities. When asked about what type of interventions they would be happy for their well child to participate in, the majority of parents consented to each of the 10 activities suggested (see Table 3). Most parents who explained their "No" response(s) to these interventions gave their reason(s) in terms of protecting their well child from the possible adverse effects of activities.

Those families who said they had observed or expected problems in their well child(ren) were consistently more willing for their involvement in the 10 proposed activities (see Table 3). For "Hospital Tour and Equipment Play" ([chi square] = 7.31, p < 0.01), "Hospital Play" ([chi square] = 7.16, p < 0.01), and "Telephone Support" (2 = 4.32, p <0 .05) activities, this association reached significance. Mothers were repeatedly more likely to say "Yes" to the suggested interventions than fathers. This association reached significance ([chi square] = 4.25 incorporating Yate's correction, p < 0.05) for Hospital Play, and also when the answers from all proposed activity types were combined to create a "Willingness" score (U = 257, p < 0.004).

The "Willingness" score was also used to compare the distribution of answers from parents of children in different age groups. Parents of adult siblings (i.e., families where the mean age of the siblings was >16 years) were shown to be significantly less willing than those with mean age 1 ]]6 years (U = 39, P < 0.00006). Also, those families whose siblings' mean age was < 7 years were less willing (U = 522, p < 0.06) than those with sibling mean age 7-16 years. Many parents quoted age (either as being "Too young" or "Too old") as their reason for saying "No" to proposed activities.

Parents were also asked whether they thought their well child should be more involved in their sick child's nursing care. Fifty-eight percent (n = 43) of respondents said yes to this (95%, confidence interval 52%-64%). Two parents stated that they thought such involvement could upset their child.

Views on intervention format. Parents were asked to which of six different types of session parents would be able to bring their well child. As shown in Figure 1 if the session types necessitated more parental commitment in terms of resources needed to facilitate the well child's attendance, fewer parents said that their well child(ren) could attend the session. In qualitative statements, parents frequently gave time and transport resources as reasons for their family's inability to attend. Reasons for nonattendance were given in terms of the needs of siblings, parents, and the whole family.

[FIGURE 1 OMITTED]

Those families anticipating problems with their well child(ren) were more likely to say they could attend offered session types, and this association reached a significant level in the case of half-day sessions ([chi square] = 7.94, p < 0.01). and full day sessions with outpatient appointments ([chi square] = 10.71, p<0.01). When all session types were combined to formulate an "Able-to-Attend" score for each respondent, the distribution of scores for those families observing/anticipating problems was significantly higher (U = 417, p < 0.01) than for those families not observing/anticipating problems.

The final fixed-response questions asked parents their feelings about whole-family sessions. Seventy-two percent (n = 53, 95% confidence interval 66%-77%) of parents said that sessions designed for the whole family would be more useful than sessions designed for siblings alone. This preference for whole-family sessions was significantly stronger ([chi square] =7.71, p < 0.01) in families that had stated earlier in the questionnaire that they had seen or expected problems in their well child. Fifty-nine percent of families (n = 39, 95% confidence interval 53-65%) said that a whole-family session would be easier to attend than a sibling-only session.

Additional information offered by parents. Less than a quarter of respondents completed a final openended question asking for any further relevant information. Those that did, either described changes that they had observed in their well child(ren) (these changes matched those commonly found in the literature) or described what they felt was needed to help their well child(ren) to cope. Many of these suggestions were reiterations of interventions described earlier in the questionnaire. New ideas included:

* Information on ways siblings could help (within the family).

* Information packs for parents and others involved with siblings.

* Encouragement for the sick child to act normally and behave considerately.

Discussion

Parental estimation of sibling problems. Due to the voluntary nature of participation in the study, the finding that 50% of parents anticipate problems in their well child(ren) resulting from the sick child's illness is probably an overestimation. It seems likely that parents who believe that their well child(ren) are not at risk for problems would see the study as irrelevant, reducing the likelihood of their participation. This finding is in contrast with other studies (Heffernan & Zanelli, 1997; Wang & Martinson, 1996) where parents have reported a large proportion of siblings showing behavior changes following diagnosis. In one study this change was observed in 95% of siblings (Heffernan & Zanelli, 1997). However, this questionnaire did not provide any definition of "problems." Hence, it may be that some of the parents who denied problems had, for example, observed depression or withdrawal in their well child but did not interpret this as problematic, perhaps seeing it as an understandable reaction to what had occurred. The result must also be interpreted in the light of possible parental denial; it may be that parents who are already under enormous pressure cannot allow themselves to admit to any further threats to their family's integrity, such as possible problems with their well child(ren).

Parental views on current support. It is not possible to say whether the 60% of parents who felt professionals were doing nothing to help well siblings represents true professional inactivity or whether it is merely that, for example, some common informal strategies (e.g., befriending visiting siblings or enlisting their help) are seen as kindness rather than therapeutic interventions. Nevertheless, the mere fact that parents perceive professionals as inactive in meeting the needs of siblings is in itself detrimental. If professionals are viewed as not attempting to help siblings, the parent is likely to interpret this as a sign that professionals are unconcerned or that such help is not warranted by professionals, themselves, or others.

This finding represents the views of parents only on support received. Given Murray's (2002) finding that parental perceptions of the types of social support that are helpful to siblings differ from those of siblings themselves, it would be interesting to contrast this study's finding with similar enquiry to a group of siblings.

Mothers' versus fathers' views. The lesser readiness of fathers to allow siblings to participate in suggested activities compared to that of mothers is perhaps unsurprising. It has been shown that fathers' attitudes towards (Levenson, Copeland, Morrow, Pfefferbau, & Silberberg, 1983) and knowledge levels about their sick child's illness (Nolan, Desmond, Herlich, & Hardy, 1986) differ from mothers'. It may be that fathers who generally spend less time at the hospital with their child have less confidence in the competence of health professionals and less insight into the needs of their well child(ren).

Parental preferences for the format of interventions. Families whose child has completed treatment are more reluctant to allow their well child to participate in or attend offered interventions, suggesting that interventions should be directed towards siblings of children who are still on treatment. Also, the targeting of families whose well child(ren) are of school age would seem to yield better attendance, given the greater willingness of parents of children in this age group.

The prevailing acceptance by parents of the 10 suggested interventions, in conjunction with the smaller numbers of parents professing to be able to bring their child to interventions, suggests that the lack of interest in Woodhouse's (1996) "Sibling Days" was not due to a dislike of the activities involved, but rather due to the practical difficulties of delivering children to the intervention. This contrasts with the reasons given by adults for non-attendance at cancer support groups, which were predominantly in terms of the groups being considered less effective than other support systems (de Bocanegra, 1992).

In the questions asking about the types of sessions that would be easiest to attend, parents' responses seemed to indicate a trade off for quality against quantity; that is, those sessions that would be well attended are those where so much flexibility in timing would be necessary that no more than a handful of siblings would be present at any one time, and hence the important therapeutic element of peer support would be missing. The exception to this trend is the weekend-camp type session, which being potentially well attended (64% of respondents saying "Yes" to this option) gives the opportunity to work with reasonably large groups of similarly aged children.

The concept of family therapy, as opposed to individual therapy, has grown in popularity, as it is felt that the family constitutes the child's earliest coping resources and determines the child's problem-solving skills and openness in communication (Blotcky, Raczynski, Gurwich, & Smith,1985). Therefore, to work with the family as a whole is likely to be more effective (Eiser, 1990; Faulkner et al., 1995). The majority of families in this study have supported this concept. However, there is also recognition that at times some children need support from outside the family (Martinson et al., 1990) and this was recognized by one parent in this study who stated, "I think maybe the first [one] or 2 sessions should be for the whole family to introduce the children to the staff, but on the whole I've found a child will often speak more openly when his/her parents aren't around once a link has been made with another person."

Limitations

The 36% of those eligible for the study that failed to respond represent the biggest threat to the study's validity, as these parents may have differed significantly from the respondents in their answers to the questionnaire. Non-response may be due to the parent feeling that sibling support is unimportant. This could have caused the study's estimates of the number of children with parent-perceived problems and the numbers of children who would be allowed/able to attend interventions to be falsely high.

As only one questionnaire was given to each family and many families had several well children, comparing respondents' answers with the age(s) of their children was difficult. The use of the mean age of the well children as the means of assessing age may have diluted the strength of many of the associations seen and have rendered other links undetectable. In addition, no formal measure of the test-retest reliability or content validity of the tool was undertaken.

Implications for Practice

The finding that many families do not see their child(ren) as being at risk for problems and, hence, have less motivation to facilitate their attendance at interventions, would seem to indicate that we should be informing families of the psychological dangers potentially incurred by well siblings. However, some parents may well be using denial to cope with these threats to their well child(ren), and hence, such a strategy would deny them that coping mechanism, with potentially adverse implications for the whole family.

Until research is completed to determine how a parent copes with such information, it seems advisable that an individualized approach that assesses each parent's knowledge level, coping mechanisms, and emotional state before tackling the issues of the well sibling be used.

For all those practicing in pediatric oncology this study has shown that there is an ongoing need for professionals to provide structured help for parents to assist their well child(ren) through the experience. This study indicates that interventions for siblings would be better attended if they occurred while the sick child was still receiving treatment, if they were targeted at well children in the 7-16 year age group, and if they minimized the amount of parental resources required (e.g. in terms of time and costs of ferrying well children to and from the chosen venue).

Conclusion

The study has established that about half of all parents of children with cancer do not expect their well child(ren) to have problems as a result of the experience. This belief is associated with significantly reduced willingness to involve their child in, and significantly reduced ability to bring their child to, therapeutic interventions arranged by professionals. Families of children still receiving treatment are significantly more likely to say that they have seen/expect to see problems in their well child(ren) than those whose children have completed treatment. Although respondents agreed to the majority of types of activities proposed, mothers were significantly more willing than fathers for their offspring to participate in these activities. Similarly, parents whose well children's mean age was between 7 and 16 years were more willing for them to participate in these activities than parents of very young or adult siblings. Parents of adult siblings were also significantly less able to bring them to sessions than parents of child siblings; however, such adult siblings are likely to be able to bring themselves to such interventions.

There was general agreement amongst parents that the existing written and video material on the subject of siblings was inadequate. Almost three-quarters of families felt that sessions designed for the whole family would be more useful than those aimed solely at the well child(ren).

As a result of the above findings the following strategies are now being undertaken to support the siblings of children with cancer.

Literature. The following three booklets have been designed to fill the gaps in literature identified by parents in the study:

1. "How to Help Brothers and Sisters." A booklet aimed at all adults who have contact with siblings (i.e., extended family, neighbors, friends, childminders, teachers) providing advice on how to help siblings to cope with the experience.

2. "My Brother has Cancer." A booklet aimed at siblings aged 3-9 years providing information and exploring emotions in a storybook format.

3. "When Your Brother or Sister Gets Cancer." A booklet aimed at siblings aged 9-18 years. The booklet provides factual information and short reports from other older siblings on their experiences, emotions ,and coping strategies.

These booklets have been piloted by families and professionals through the multidisciplinary UKCCSG (United Kingdom Children's Cancer Study Group) Sibling Group. This has ensured that their content is appropriate for use across the UK. Thanks to funding from Macmillan Cancer Relief these booklets are now available in all 22 UK Childhood Cancer Treatment Centers.

Sibling weekends. In order to exploit the relatively large numbers of siblings whose parents indicated that they could attend this type of intervention, "Sibling Weekends" were developed. This format of intervention also allowed sufficiently large numbers of similarly aged siblings to meet, allowing group-type interventions to take place. To date, a total of 6 weekends have been run.

The aims of the weekends are twofold. First, participation in the adventure activities provides siblings with an opportunity for fun, to achieve in new challenges, and to be shown that they are valued and special in their own right. Second, the weekends aim to give the opportunity for siblings to meet others in a similar position, and with the help of group leaders, to explore their own problems, feelings, and coping mechanisms, and those of fellow siblings.

Each weekend accommodates approximately 18 siblings aged 8-16 years. All weekends have been funded by charitable organisations, the majority to date by Sargent Cancer Care for Children. Activities such as rope sliding, table tennis and cycling form the backbone of the weekend. These activities are interspersed with group sessions planned by clinical psychology staff. For these, siblings are divided into groups, ensuring that those of similar ages are kept together and that siblings from the same family are in different groups. In the first 3 weekends run, the groups focused on individual siblings' circumstances and feelings. However in some groups it was noted that siblings were reluctant to participate in direct discussion about their experiences. In later weekends it was therefore decided that groups should have an alternative emphasis. For older siblings the group's focus is on the production of a newsletter aimed at siblings who have not attended a weekend. Siblings choose to write about their experiences, tips for other siblings, reports from weekend's activities or to create puzzles or quizzes. Younger siblings are helped to produce a board game. Questions and answers for the game are formulated by the siblings themselves and focus on learning about the illness and ways of coping with the challenges of being a sibling.

At the end of each weekend siblings complete evaluation forms. To date all siblings have given positive assessments of the weekend, with the great majority saying that they enjoyed it "very much". Nearly all siblings stated that they found it helpful to meet other siblings in the same position and to talk about their experiences, e.g. 'I enjoyed it. I don't usually get to talk to anyone. I usually lock my feelings up inside so it was nice to talk about it.' The majority of siblings explained their enjoyment at meeting other siblings in terms of feeling less isolated and better understood.

The most recent weekend was run in association with the Over the Wall Gang Camp, a charity with extensive experience in providing holidays for children affected by cancer. It is hoped that this collaboration will allow the model be further developed and offered to siblings of children treated at other children's cancer treatment centres in the UK.
Table 1: Definitions and Sizes of Population Subgroups for Comparison

Subgroup for Comparison   Size       Subgroup for Comparison   Size

Parents whose Sick        n=65 (1)   Parents whose Sick        n=21 (1)
Child was still                      Child had completed
receiving Treatment                  treatment
Questionnaire completed   n=58 (2)   Questionnaire completed   n=16 92)
by Mother                            by Father
Parents whose Sick        n=21 (1)   Parents whose Sick        n=56 (1)
Child was Inpatient at               Child was Outpatient at
the Time of the Study                the Time of the Study
Parents who had           n=41 (1)   Parents who had           n=41 (1)
Answered "Yes" to the                Answered "No" to the
Question "Do you think               Question "Do you think
your well child/chil-                your well child/chil-
dren has or is likely                dren has or is likely
to have any problems                 to have any problems
as a result of your                  as a result of your
sick child's illness?"               sick child's illness?"
Parents who had only      n=36 (1)   Parents who had 2 or      n=41 (1)
one well Child                       more well Children

Parents whose well Children's mean Age (in years) fell into different
groups

 <4     n=11    4-7    n=13   7-11    n=29   11-16   n=21   >16     n=7
years   (1)    years   (1)    years   (1)    years   (1)    years   (1)

(1) Totals are less than total study population due to some respondents
not answering all questions

(2) Totals are less than total study population due to some respondents
not answering all questions and some questionnaires being completed by
both parents or a friend.

Table 2: Views of Parents on Help Received by Siblings

                                       Percentage of Total Answering
                                       "Yes" (1) (n, 95% Confidence
                                       Interval)

Help has been offered                  40% (2) (n=33, 34%-45%)
Help was useful                        86% (2) (n=25, 73%-99%)
Parents received enough literature     29% (2) (n=23, 24%-34%)
Received enough video information      14% (2) (n=12, 11%-18%)
Siblings received enough literature    26% (2) (n=21, 21%-31%)

(1) Due to fixed response questions all those answering who did not
answer yes answered "No"

(2) Percentage expressed as proportion of respondents answering the
question, as some respondents omitted certain questions

Table 3: Therapeutic Activities Proposed and Parental Willingness for
Sibling Involvement, including Comparison between Parents who Observe/
Anticipate Problems in their Well Child(ren) and Those Who Do Not

                                                        Percentage of
                                                       Total Answering
                                           Total            "Yes"
                                         Answering     (95% Confidence
                                          "Yes" *         Interval)

Teaching about what cancer is            75            88%
                                         n=85 (1)      (85%-92%)
Teaching on cancer aetiology             72            87%
                                         n=83 (1)      (83%-90%)
Teaching on cancer treatment             75            88%
                                         n=85 (1)      (85%-92%)
Hospital tour and play with equipment    72            87%
                                         n=83 (1)      (83%-90%)
Hospital play                            70            83%
                                         n=84 (1)      (79%-87%)
Sharing feelings                         73            86%
                                         n=85 (1)      (82%-90%)
Discussing ways of coping                73            87%
                                         n=84 (1)      (83%-90%)
Telephone support                        66            78%
                                         n=85 (1)      (73%-82%)
Letter exchange                          64            78%
                                         n=82 (1)      (73%-83%)
Watching supportive videos               73            91%
                                         n=80 (1)      (88%-94%)

                                                        Percentage of
                                                           Parents
                                                         Observing/
                                           Total        Anticipating
                                         Answering        Problems
                                          "Yes" *      Answering "Yes"

Teaching about what cancer is            75            92%
                                         n=85 (1)
Teaching on cancer aetiology             72            90%
                                         n=83 (1)
Teaching on cancer treatment             75            95%
                                         n=85 (1)
Hospital tour and play with equipment    72            97%
                                         n=83 (1)
Hospital play                            70            95%
                                         n=84 (1)
Sharing feelings                         73            93%
                                         n=85 (1)
Discussing ways of coping                73n=84 (1)    92%

Telephone support                        66            87%
                                         n=85 (1)
Letter exchange                          64            84%
                                         n=82 (1)
Watching supportive videos               73            95%
                                         n=80 (1)

                                                        Percentage of
                                                         Parents Not
                                           Total         Observing/
                                         Answering      Anticipating
                                          "Yes" *      Answering "Yes"

Teaching about what cancer is            75            85%
                                         n=85 (1)
Teaching on cancer aetiology             72            85%
                                         n=83 (1)
Teaching on cancer treatment             75            83%
                                         n=85 (1)
Hospital tour and play with equipment    72            77%
                                         n=83 (1)
Hospital play                            70            73%
                                         n=84 (1)
Sharing feelings                         73            80%
                                         n=85 (1)
Discussing ways of coping                73n=84 (1)    82%

Telephone support                        66            68%
                                         n=85 (1)
Letter exchange                          64            73%
                                         n=82 (1)
Watching supportive videos               73            89%
                                         n=80 (1)

                                           Total
                                         Answering      Significance
                                          "Yes" *      Level (p < .05)

Teaching about what cancer is            75            NS
                                         n=85 (1)
Teaching on cancer aetiology             72            NS
                                         n=83 (1)
Teaching on cancer treatment             75            10.1 or NS
                                         n=85 (1)
Hospital tour and play with equipment    72            p<0.01
                                         n=83 (1)
Hospital play                            70            p<0.01
                                         n=84 (1)
Sharing feelings                         73            NS
                                         n=85 (1)
Discussing ways of coping                73n=84 (1)    NS

Telephone support                        66            p<0.05
                                         n=85 (1)
Letter exchange                          64            NS
                                         n=82 (1)
Watching supportive videos               73            NS
                                         n=80 (1)

* Due to fixed response questions all those answering who did not
answer "Yes" answered "No"

(1) Totals are less than total study population due to some respondents
not answering all questions

(2) Not significant at the p<0.05 level


Acknowledgements: The authors acknowledges with gratitude, the members of the following teams at Birmingham Children's Hospital who were instrumental in the development of the sibling weekends and leaflets: Sargent Social Work Team, Clinical Psychologists, Ward 15 and Oncology Clinic Nursing Teams and the Macmillan Team. Thank you also to the members of the UKCCSG sibling group for their input to leaflet development.

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Katherine L. Ballard, RGN, RSCN, BN, MMedSc, is Paediatric Macmillan Clinical Nurse Specialist, Department of Oncology and Haematoiogy, Birmingham Children's Hospital, Birmingham, England.
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