Abstract
The objective of this pilot study was to examine satisfaction with SIBS-ONLINE, a manual-based group online intervention for parents and children with a sibling with chronic health conditions. Three families with a child with type 1 diabetes were recruited online via summer camps. The SIBS-ONLINE intervention consisted of 6 online weekly group sessions via Zoom videoconferencing. Satisfaction with the intervention in both mothers and sibling participants was assessed at the end of the study via questionnaires. For mothers, 66.7% reported that they agreed the intervention format was easy to use, they would participate again, the intervention helped to better manage their sibling’s role and their communication with the child, and that they liked the experience. One hundred percent of mothers reported that they would recommend SIBS-ONLINE to similar families. For siblings, 100% reported enjoying the intervention experience. The SIBS-ONLINE intervention demonstrated a high level of satisfaction among families.
Introduction
Children who have a sibling with a chronic health condition, including type 1 diabetes, are more likely to experience psychological disturbance, caring strain, problem behaviors, decreased self-esteem, poor social interactions, and increased distress.1,2 Healthy siblings may experience fear and uncertainty regarding their sibling’s prognosis and knowledge of type 1 diabetes.2,3 School engagement may be affected due to changes in family functioning and routine 4 and they may take on increased caregiving roles, which may result in enhanced stress, difficult adjustment, and relationship alterations.4,5 Thus, type 1 diabetes can have broad implications on the family system, including the well-being and psychosocial functioning of healthy siblings.
Sibling support groups, psychoeducational interventions, and camps have been cited as forms of sibling support for a variety of child chronic health conditions.2,6,7 There is a paucity of evidence-based, psychosocial interventions for healthy siblings of children with type 1 diabetes8,9 despite positive outcomes for siblings’ being demonstrated.8,9 For example, The Support and Skills Program that involved intervention in support and social abilities, communication skills, and leisure activities was associated with decreases in self-reports of depression, anxiety, and negative self-esteem in healthy siblings of children with autism spectrum disorder. 10 Healthy siblings of children with type 1 diabetes might be expected to have differing outcomes compared with siblings of other chronic illnesses, given the unique presentation of type 1 diabetes. For example, siblings have been cited to take part in the required monitoring of blood glucose levels and tasks related to daily insulin therapies, alongside findings that siblings are often worried and vigilant about their sibling with type 1 diabetes, contributing to continuous stress. 11 Furthermore, type 1 diabetes is distinct from other chronic health conditions in terms of its mortality risk from failure of glycemic control, which is more common among adolescents with type 1 diabetes compared with adults, that have ripple effects on family members for assisting with adherence and concern regarding the child’s health longevity. 12
The original SIBS intervention was developed as a preventive manual-based group intervention that focuses on parent–child communication and the well-being of healthy siblings. 13 An evaluation of the SIBS intervention 13 included the following chronic health conditions: autism spectrum disorders, congenital heart disease, down syndrome, cerebral palsy, and rare disorders involving intellectual impairment or physical impairment (e.g., Angelman syndrome, Becker muscular dystrophy, Bethlem myopathy, chromosome 5q deletion syndrome, congenital muscular dystrophy, Cri-duchat syndrome, Duchenne muscular dystrophy, fragile X syndrome, Friedreich’s ataxia, hereditary ataxia, humoral immune deficiency, Klinefelter syndrome, neurodegenerative disease, neurofibromas type 1, Noonan syndrome, osteogenesis imperfecta, Prader–Willi syndrome, Smith–Magenis syndrome, spinal muscular atrophy, velocardiofacial syndrome). Findings indicated high levels of participant satisfaction, perceived importance and utility, and parental increased competence and familial communication. For intervention efficacy, improved quality of communication that partly explained sibling adaptation to the disease and emotional and behavioral difficulties, and disorder-knowledge was found. 13
SIBS-ONLINE was created as a web-based version of the original SIBS intervention. 14 A study examining SIBS-ONLINE with parents and well siblings of children with chronic health conditions, including rare genetic disorders and autism spectrum disorders, found that 100% of participants felt listened and responded to and 78% felt they could support participants and be supported. 14 The findings of the study supported the use of online group interventions with children, and SIBS-ONLINE as being suitable and positive for participating families. However, this study was unable to separate families by relevant chronic health condition, such as specifically with families of children with type 1 diabetes. The purpose of the current pilot study was to assess satisfaction of SIBS-ONLINE with siblings and parents of children with type 1 diabetes.
Materials and Methods
SIBS-ONLINE was conducted by two group leaders who were clinical psychology doctoral students and trained by the developers of the intervention. 13 The pilot study was conducted with three families who were recruited via 11 summer camps for families of children with chronic health conditions. In total, the sample consisted of three mothers and three healthy children who had a sibling with type 1 diabetes. Although small, the study’s sample size is consistent with other published pilot studies,15,16 providing preliminary data for evaluating our primary research questions.
The SIBS-ONLINE intervention was intended to provide parents tools to improve family communication and family functioning, provide opportunities for siblings to share experiences of responsibilities and challenges, and allow both siblings and parents to meet and interact with other families undergoing similar circumstances. Both parents and siblings participated in six sessions delivered through a secure videoconferencing internet software (e.g., Zoom) by the fully trained group leaders. All participants gave their informed consent, and ethical approval for the study was obtained from Baylor University’s Institutional Review Board (IRB).
SIBS-ONLINE intervention
Table 1 outlines the SIBS-ONLINE intervention components. In summary, in session one for children, the goals were to create a positive atmosphere and learn more about each other, learn the format of the conversational style that SIBS-ONLINE encourages, and provide children with information regarding the sessions and expectations. Session one for parents held similar goals, with parents getting to know each other, and were provided with information regarding the rationale and implementation of the intervention.
Overview of the SIBS-ONLINE intervention
Session two for children focused on the child participants’ ability to discuss their sibling’s type 1 diabetes diagnosis, the information they may continue to question, and formulating questions about type 1 diabetes to ask their parents. In session two for parents, goals consisted of parents increasing awareness of their child’s understanding of the disorder and learning techniques related to listening, exploration, and validation of their child’s thoughts and questions with guided practice.
Session three was the first joint session, with the purpose being for children and parents to create a positive conversation experience with support from the group leaders. Children were instructed to ask their individual questions and/or the common question to their parents, and parents were instructed to utilize the three techniques learned (e.g., listen, explore, validate) prior to providing factual explanations to children in breakout rooms; group leaders dropped in intermittingly and provided feedback on the parent’s communication.
Session four for children focused on the child’s emotional experiences of their role as a sibling and what they wished was different. Session four for parents intended for parents to gain insight into their children’s emotional experiences and perceived challenges, and to continue to practice listening, exploring, and validating.
Session five joint session and session six concluding session were combined, where parents and children had the same task of discussing individual questions and parents practicing their skills with their children. A final review of the participant experience and feedback to the group leaders was facilitated as the joint finish. The reader is referred to Vatne, Haukeland, and Fjermestad (2023) for more detailed information about the format and content of the SIBS-ONLINE intervention.
Measures
Satisfaction with treatment was measured via an online Qualtrics survey by both sibling and parent report developed for the current study approximately 1 week postintervention. The questionnaire had a total of seven items, six of which were scored on a 5-point scale (0–5), where answer choices ranged from strongly disagree to strongly agree. The seventh item was an open-ended question for participants’ free response. The items are listed in Table 2. As indicated, items for siblings were identical to the parent items with the exception that they asked about the healthy siblings’ perceptions of SIBS-ONLINE.
Child and parent satisfaction items and results
child questionnaire item.
Data analysis
Quantitative data were analyzed using SPSS version 29.01.1 to determine frequencies of responses in both parents and sibling participants. The content of the open-ended questions across participants related to aspects of participant experience with SIBS-ONLINE was reviewed.
Results
Participant characteristics
Six participants from three families responded to the postsatisfaction measure for a response rate of 100%. Mothers’ median age was 48 years, and sibling median age was 15 years. Parents were comprised of all biological mothers of the participating child, with two mothers having university and/or college up to 4 years as their highest degree. Child participants included one male and two females, with one of each type of sibling (i.e., younger, older, twin). All participants identified as White and did not identify as Hispanic or Latino. Each participating family had a child diagnosed with type 1 diabetes, and comorbid conditions including heart disorder, Hashimoto’s disease, and IgA Nephropathy.
Parental satisfaction
Parental responses to the satisfaction questionnaire are reported in Table 1. In response to the open-ended question, “What did you like about the SIBS-ONLINE Intervention? What could be improved?” parents indicated they enjoyed, “Parent/child discussions,” and it was “great to meet others in a similar situation.” One parent indicated, “Simple, actionable communication tools were taught. The group leaders were likeable, relatable, and professional.”
Child satisfaction
Child responses to the satisfaction questionnaire are reported in Table 1. In response to the open-ended satisfaction question, “What did you like about the SIBS-ONLINE Intervention? What could be improved?” children reported on their differential experiences including, “I was fine with everything, there’s nothing I didn’t like and nothing I loved,” and “I really liked being able to talk to and meet other kids. We learned more about each other than just that all of our siblings have diabetes.”
Discussion
The purpose of the current study was to examine views of satisfaction with SIBS-ONLINE, a manual-based group online intervention for parents and healthy children with a sibling with chronic health conditions, among three mothers and three healthy children with a sibling with type 1 diabetes. Participant acceptability findings suggest that SIBS-ONLINE provided a satisfactory experience to parents and healthy siblings of children with type 1 diabetes.
All parents in this study either agreed or strongly agreed that SIBS ONLINE helped them better manage their child’s role as a sibling and their communication with them. This is noteworthy given research that suggests healthy children who have a sibling with type 1 diabetes often experience challenges around communication and determining their role within the family system. 17 For instance, previous research has supported challenges in siblings of children with type 1 diabetes related to a decline in parental attention and an increased sense of parental stress and frustration, which can negatively affect parent–child communication.17,18 Specified areas of the shift in caregiving roles siblings of children with type 1 diabetes may experience, such as helping with routine T1D management, noticing signs of hypo- and hyperglycemia in the affected child, and general monitoring; this may create difficulty in sibling adjustment and ability to express challenges to caregivers. 18 The value of SIBS-ONLINE in terms of facilitating healthy parent/child communication was further emphasized in the responses to the open-ended question in which two parents noted they most enjoyed the parent/child discussions and appreciated the simple, actionable communication tools they learned.
There was more variability in perceptions about satisfaction with the intervention among healthy siblings in the present study. Previous research has found healthy siblings have more limited satisfaction with interventions due to differences in developmental age and appropriateness of the intervention 19 the value of intervention activities and level of personal interest and the development of group identity and a positive group atmosphere, 20 and level of parental involvement to directly address parent–child interactions. 21
The current study had several limitations. Given the small sample size, there may be decreased generalizability of the findings. The small sample size was, in part, a function of recruitment challenges; relatedly; the number of families approached through the summer camp recruitment method is unknown, which may also limit generalizability. The age range of the healthy sibling sample was diverse (ages 11–17 years), which may have differentially impacted children’s perception and experience of the intervention. Based on the variability in sibling’s reported experience of SIBS-ONLINE, future directions may benefit from restricting the implementation of the intervention to healthy siblings more similar in age, as our results gleaned that the age of the sibling may impact engagement with the material. One possibility in addressing varied developmental levels in sibling-based interventions may lie in altering the content of examples to be more developmentally appropriate for younger or older siblings (e.g., the example videos for child participants in SIBS-ONLINE). A sample comprised of similarly aged siblings could foster opportunities for examples to hold increased relevance for the demographic that may be less applicable to the opposite age groups (e.g., responsibilities older adolescents possess, such as jobs, taking care of younger siblings, applying to college). Consistently, prior research supports the significance of skills being suitable for siblings’ developmental capacities and being perceived as effective and enjoyable in the level of investment in the intervention. 22
It will be important for future studies to continue to evaluate the satisfaction of SIBS-ONLINE among healthy children who have a sibling with type 1 diabetes and other chronic health conditions. Based on the qualitative data derived from this study, future efficacy research may assess outcomes of interest such as child and parent coping, adaptation to illness or other measures of adjustment, and family communication and/or functioning. Poor family functioning, including conflict and resentment, is related to lack of quality parent-sibling communication,23,24 emphasizing the importance of evaluating both constructs concurrently. In addition, given that parent data evidenced increased consistency and acceptability compared with child data, it will be important for future research on interventions targeting families of children with chronic health conditions to continue to include both parents and healthy siblings to capture differing perspectives that equally contribute to the intervention feasibility. In line with a family-systems approach, there may be some benefit in including the child with the chronic health condition as well, to facilitate familial communication across all relevant members. Finally, given the logistical difficulties (e.g., scheduling) that were encountered using an online platform with participants located in different time zones, it may be helpful for future studies to recruit from one location or shared time zones.
Conclusions
The SIBS-ONLINE generally demonstrated high satisfaction in a sample of mothers and healthy of children with a sibling with type 1 diabetes. Such preliminary findings suggest support for the enhancement of parent–child communication and sibling well-being, further advocating for the use of SIBS-ONLINE in families undergoing similar circumstances, in a manner that may likely be well-received and positively experienced.
Footnotes
Authors’ Contributions
All authors contributed to the design and implementation of the study, to the analysis of the results, and to the writing of the article.
Author Disclosure Statement
The authors declare that they have no competing interests.
Funding Information
No funding was received for this article.