Siblings of young people with chronic illness: Caring responsibilities and psychosocial functioning

Abstract

Siblings of young people with chronic illness commonly undertake caring responsibilities for their affected brother/sister, which may encourage maturation, yet may also be perceived as a burden. Our study determined (1) siblings’ caring responsibilities, (2) siblings’ current emotional distress and psychosocial functioning, and (3) how siblings’ caring responsibilities and psychosocial functioning related to familial relationships and coping strategies. Siblings completed questionnaires which contained Sibling Inventory of Behavior, Sibling Inventory of Differential Experiences, PedsQL, emotion thermometers, Brief COPE, and a checklist of caregiving responsibilities. We analyzed the data with t-tests and multi-level models. Forty-five siblings (mean age = 15.40 years, SD = 3.31 years; 60.0% female) participated. Siblings who had caring responsibilities (n = 26, 57.8%) reported lower anxiety symptoms, lower need for help, greater use of problem-focused coping, and more companionship and teaching/directiveness with their affected brother/sister than siblings without caring responsibilities. Siblings reported lower psychosocial and physical functioning when they perceived their parents provided them with less affection than their affected brother/sister. Family-based psychosocial interventions may aim to improve the sibling–parent relationship (including expressing affection) and the sibling–sibling relationship. Future interventions may also focus on increasing siblings’ use of problem-focused coping strategies.

Keywords

child chronic illness siblings pediatrics mental health caring responsibilities

Approximately 10–25% of children and adolescents under 18 years have a chronic illness which lasts greater than 6 months and requires long-term care (Australian Institute of Health and Welfare, 2020). Child chronic illness can include cancer, chronic kidney disease, cerebral palsy, epilepsy, and cystic fibrosis, among many others (Australian Institute of Health and Welfare, 2020). Family members can be severely affected by child chronic illness (Jones and Reilly, 2016), and this is particularly true for the child’s “healthy” siblings.

Derived from an integrative review of the literature, Lummer-Aikey and Goldstein (2020) discerned four broad constructs involved in sibling adjustment: (1) their psychosocial well-being and mental health, (2) the unique experiences of being a sibling, (3) communication, and (4) their coping strategies. The current study draws upon these broad constructs. Lummer-Aikey and Goldseitn’s “concept map” shows each of these four constructs independently influencing sibling well-being. Nevertheless, as we explain below, these constructs are likely to be interrelated.

Siblings’ psychosocial well-being and mental health

When one child is chronically ill during childhood, siblings may be fearful about their brother/sister’s health or resentful about perceived loss of parental attention (Long et al., 2018; Tregidgo and Elander, 2019). These experiences may result in emotional and mental health concerns for the siblings, including ongoing distress, anxiety, and anger (Knecht et al., 2015; Vermaes et al., 2011). Siblings of children with a chronic illness may also report positive experiences, such as increased empathy and closer ties with their affected brother/sister (Knecht et al., 2015; Long et al., 2015).

The unique experiences of being a sibling

Siblings’ responsibilities to care for their brother/sister with a chronic illness are a unique experience for siblings which set them apart from their peers. Caring responsibilities may include supervising the affected child and/or other siblings while the parents are away, assisting with medical duties at home, and helping their brother/sister with day-to-day tasks (Kale and Siğirtmaç, 2020; Read et al., 2010). Adult siblings commonly report caring responsibilities, but these responsibilities appear to start in childhood and adolescence (Chikhradze et al., 2017; Kale and Siğirtmaç, 2020; Webster, 2018). Webster (2018) found that siblings of children with epilepsy substantially contributed to their brother/sister’s informal care and identified three distinct categories of young siblings’ caring responsibilities: “alert assistants” (monitoring their brother/sister and alerting parents to a flare up of symptoms), “substitute parents” (taking on the primary caring responsibility when parents are not available), and “parenting assistants” (helping parents with caring responsibilities). The impact of these responsibilities on the sibling’s well-being during adolescence has rarely been studied, and when it has, results have been mixed (Read et al., 2010). Increased responsibilities may encourage maturation, but they may also be perceived as a burden (Kale and Siğirtmaç, 2020), thus affecting siblings’ mental and emotional well-being (Chikhradze et al., 2017; Long et al., 2015).

Sibling relationships with their ill brother/sister and their parents

Falling at the intersection of both “communication” and “coping” are familial relationships, specifically the parent–sibling and sibling–sibling relationships. Siblings may perceive that their parents provide them with less attention and greater rule-setting than their affected brother/sister (Parker et al., 2020; Wilkins and Woodgate, 2005), which may be exacerbated by their greater responsibilities at home. This perceived differential parenting could impact the siblings’ emotional well-being as well as their relationship with their brother/sister. Siblings have commonly reported rivalry, jealousy, and anger toward their brother/sister with a chronic illness (Wilkins and Woodgate, 2005). Siblings who perceive that their parents provide them with less attention than their affected brother/sister can experience poorer mental health (Incledon et al., 2015). Siblings’ perceptions of differential treatment appear to be a particularly important determinant in their mental health (Incledon et al., 2015), which points to underlying cognitive processes as potential protective factors.

Siblings’ coping strategies

Siblings’ coping skills may be another element which influences siblings’ experiences (Houtzager et al., 2004). Coping is a large determinant of mental ill-health during adolescence (Gomez and Mclaren, 2006), and this may be particularly true for siblings of young people with chronic illness, who typically face more accumulative stressors than their peers (Deavin et al., 2018). Siblings commonly report using avoidant coping strategies such as distraction, compartmentalization, and blaming others (Deavin et al., 2018; Gold et al., 2008). Use of these strategies may also affect the sibling–sibling relationship; siblings may avoid spending time with their affected brother/sister in order to “fit in” to their social networks (Nielsen et al., 2012). Research shows that avoidant-based coping strategies may help to relieve distress in the short term, but are related to longer-term mental health concerns among siblings, and adolescents more broadly (Brennan et al., 2013; Gomez and Mclaren, 2006; Incledon et al., 2015; Kelada et al., 2018). Alternatively, problem-focused coping may be related to better psychological functioning among siblings (Madan-Swain et al., 1993), though findings have not been consistent (Gold et al., 2008).

Gap in the literature

Coping, well-being, and familial relationships are under-researched from the perspective of siblings of children with chronic illness (Deavin et al., 2018; Knecht et al., 2015; Long and Marsland, 2011; Vermaes et al., 2011). Previous studies regarding sibling well-being have commonly been conducted using parent proxy reports (Knecht et al., 2015; Parker et al., 2020). This is problematic as there can be large discrepancies between parent-reports and sibling-reports of sibling well-being (Parker et al., 2020; Sharpe and Rossiter, 2002). Moreover, literature on young siblings’ caring responsibilities is lacking but is an important area to investigate. Caring responsibilities are a fundamentally unique part of being a sibling of a young person with chronic illness and may set siblings apart from their peers in terms of their well-being and development.

Aim

To assess the inter-relationships between siblings’ self-reported caring responsibilities, psychosocial functioning, coping, and familial relationships. We addressed three research questions. Research question 1: What are siblings’ caring responsibilities? Research question 2: What are siblings’ current levels of emotional distress and psychosocial functioning? Research question 3: How do siblings’ caring responsibilities and psychosocial functioning relate to their emotional distress, relationship with their affected brother/sister, perceived differential parental treatment, and coping strategies?

Method

This study was part of a larger project investigating sibling and parent well-being among families with a child with chronic illness. Ethical approval was provided by the Sydney Children’s Hospitals Network Human Research Ethics Committee (Approval number: LNR/18/SCHN/449).

Inclusion and exclusion criteria

Inclusion criteria for this study included (1) being at least 12 years of age, (2) living with at least one brother/sister (including step and half-siblings) with a chronic illness who had been diagnosed ≥6 months prior to the study, (3) being able to provide informed consent, and (4) being able to speak/read conversational English. Exclusion criteria included being a sibling of a child who was terminal and believed to be imminently dying or had died.

Procedure

Data collection for this study occurred between April 2019 and April 2020. Potential participants were recruited in a number of ways: (1) clinician investigators provided the contact details for eligible families; (2) we recruited families from wards and clinics; and (3) we recruited siblings online using the study team’s social media platforms (e.g., Twitter and Facebook), as well as the social media accounts of relevant community organizations. Psychosocial researchers first informed parents of the purpose of the study and the requirements of participation (either via telephone, email, or in-person) and asked parents to discuss the study with their eligible children. If parents agreed to receive further information, the psychosocial researchers then either mailed, emailed, or handed (in the case of face-to-face recruitment) parents the study pack. Study packs included the participant information sheet, consent form (which both the parent and sibling signed), the questionnaire, a leaflet with information about where to seek help or further information, and a reply-paid envelope, which parents then gave to their eligible children. Siblings were encouraged to complete the questionnaire on their own, without a parent present. At the end of the questionnaire, we asked participants whether they received any help to complete the questionnaire. Distressed participants¹ were given a brief telephone call by the lead researcher to assess their current mood and available supports.

Measures

Siblings on average took 30 min to complete the questionnaire. Siblings were instructed to complete the questions with their brother/sister with a chronic illness in mind.

Socio-demographic questions

Several questions inquired about siblings’ socio-demographic information including their age, date of birth, sex, whether they identified as Aboriginal or Torres Strait Islander, country of birth, each parents’ country of birth, and parents’ marital status. We also asked questions about their affected brother/sister including their illness, age, sex, and age of diagnosis.

Emotion thermometers (ETs)

The ETs are visual analog scales which comprise four predictor domains (distress, anxiety, depression, and anger) and one outcome domain (need for help) (Roth et al., 1998). Each domain is rated on a 10-point visual thermometer scale and responses ≥4 equate to clinically relevant distress (Boyes et al., 2013). The ETs have been validated in an Australian sample (Andrews et al., 2008) and used extensively in child and family health research (e.g., Zwahlen et al., 2008).

Sibling inventory of behavior

The Sibling Inventory of Behavior (SIB) measures how young people interact with their siblings and was originally developed for families in which one child has a disability (Hetherington et al., 1999). The SIB contains 32 items with 6 subscales. Siblings answer each item on a 5-point Likert scale (1 = “Never” and 5 = “Always”). We chose to use 5 subscales for this study: companionship (6 items), empathy (5 items), teaching/directiveness (4 items; reflecting helping or guiding their brother/sister), rivalry (7 items), and avoidance (5 items) (Hetherington et al., 1999). Higher scores indicate that siblings display more of the behaviors in their relationship with their affected brother/sister. The SIB has shown moderate to strong internal reliability (α = .64 to .84) (Hetherington et al., 1999) and concurrent and predictive validity (Volling and Blandon, 2005). We found moderate to strong internal reliability with the current sample: companionship (α = .86), empathy (α = .68), teaching/directiveness (α = .89), rivalry (α = .71), and avoidance (α = .79).

Sibling inventory of differential experiences

The Sibling Inventory of Differential Experiences (SIDE) measures how young people perceive their familial experiences in comparison to their siblings (Daniels, 1986). The full SIDE scale comprises four dimensions; however, only the Parent Treatment dimension was chosen for our study (9 items). Two “Parent Treatment” subscales show whether siblings believe their parents provide them with different amounts of affection (differential parental affection: 5 items) and control/boundaries compared to their brother/sister with a chronic illness (differential parental control: 4 items). Participants rate on a three-point scale whether they believe their parents treat them and their affected brother/sister differently (1 = “me more”, 2 = “both the same”, and 3 = “brother/sister more”) (Daniels, 1986; Rauer and Volling, 2007). Higher scores indicate that siblings perceive their parents to provide their affected brother/sister with more affection and control than what is provided to them. The SIDE has shown strong concordance between siblings, and good test–retest reliability for differential parental affection (.70 to .77) and differential parental control (.77 to .80) (Daniels, 1986). The SIDE showed moderate internal reliability for the current sample: differential parental affection (α = .63) and differential parental control (α = .68).

Pediatric quality of life inventory

The Pediatric Quality of Life Inventory (PedsQL™ 4.0) measures health-related quality of life in children and adolescents (Varni et al., 2001). The scale contains 23 items, and siblings rate each item on a 5-point Likert scale (0 = “never” and 4 = “almost always”). The PedsQL contains two summary scores: physical functioning (8 items) and psychosocial functioning (15 items). Normative data and cut-off scores (representing an at-risk status for impaired health-related quality of life) are provided in Varni et al. (2003): cut-off for physical functioning = 72.98; cut-off for psychosocial functioning = 66.03. The PedsQL has demonstrated rigorous construct and convergent validity, moderate to strong internal reliability (Varni et al., 2001) and has been used with Australian samples (Wakefield et al., 2015). Internal reliability for psychosocial (α = .89) and physical functioning (α = .85) was strong with the current sample.

Brief COPE

The Brief COPE is a versatile measure of coping strategies, where items can be combined to form different higher order subscales (Carver, 1997). For this study, we assessed avoidant coping (3 items; distraction, denial, and behavioral disengagement) and problem-focused coping (3 items; active coping, use of instrumental support, and planning) (Schaffer and Pritchard, 2003; Wilson et al., 2005). Participants were asked how they cope with stress and negative experiences and rated each strategy on a 4-point Likert scale (1 = “I don’t do this at all” and 4 = “I do this a lot”). The original COPE inventory has demonstrated discriminant and convergent validity (Carver, 1997). The Brief COPE has shown good factor structure and has successfully been used with adolescent samples (Horwitz et al., 2011; Wilson et al., 2005). Internal reliability for avoidant (α = .60) and problem-focused coping (α = .70) was moderate with the current sample.

Caring responsibilities

We adapted a checklist of siblings’ caring responsibilities from previous research (Hunt et al., 2005). A single item asked siblings: “How often do you help or care for your brother/sister?” to which siblings could answer “never,” “hardly ever,” “sometimes,” “often,” and “very often.” Siblings then completed a checklist of 13 caring responsibilities (Table 1) to which they responded “yes” or “no” if they engaged in these behaviors. An open-ended question allowed siblings to write other responsibilities; from these responses, we have added two other responsibilities to Table 1. Participants then indicated on a scale from 0 to 100 how happy they were to undertake these responsibilities (0 = “not at all happy” and 100 = “extremely happy”).

Table 1.

Siblings’ caring responsibilities.

Caring responsibility	n(%)^a
Look after them when your parents are away or busy	26 (57.8%)
Remind them to take their medication	18 (40.0%)
Look after their other “healthy” siblings when your parents are away or busy	17 (37.8%)
Clean up after them	14 (31.1%)
Help them with their schoolwork	12 (26.7%)
Help them to talk to other people/be understood by other people	11 (24.4%)
Prepare meals for them	11 (24.4%)
Help them with medical duties, tests, and monitoring	10 (22.2%)
Help them take their medication	8 (17.8%)
Distract, play with, and entertain them	8 (17.8%)
Listen to them and provide comfort	7 (15.6%)
Help them get dressed	6 (13.3%)
Help them to eat	6 (13.3%)
Help them shower, bath, or use the bathroom	5 (11.1%)
Help them at school	3 (6.7%)

^aParticipants who answered “sometimes,” “often,” or “very often.”

Data analysis

We conducted all analyses with IBM SPSS Version 26. We grouped the responses for caring responsibilities into 1 (never/hardly ever) and 2 (sometimes/often/very often). Our target sample size was 67 participants, which would provide 80% power for an independent t-test to detect small differences (Cohen’s d = 0.2) in PedsQL scores between siblings with caring responsibilities and siblings without caring responsibilities. However, recruitment was closed when COVID-19 restrictions were introduced within our recruiting site.

Missing data were less than 5% for each variable and Little’s MCAR test revealed that data were missing completely at random: χ2(28) = 31.41, p = 0.299. We handled the missing data using pairwise deletion. Scatter plots showed that the continuous variables were approximately normally distributed. Homoscedasticity of residuals, calculation of standard scores and Mahalanobis distance indicated there were no univariate or multivariate outliers in the dataset. For Research Questions 1, 2, and 3, we used descriptive statistics to summarize the data and used independent t-tests, chi-squared tests and Pearson’s correlations to examine simple associations. Some siblings were members of the same family (see below for details), and thus, our observations were not independent. However, the small sample precluded the use of standard methods to account for clustering. As such, for these analyses, we ran each test twice: first by randomly choosing one sibling from each pair, and then again with the other sibling from each pair. This ensured that all observations were independent. We compared whether the results changed depending on which sibling was included. No substantial differences were detected through this process and so we report in this article the first analyses we conducted with the randomly selected sibling. Results from both analyses are available from the authors upon request.

For Research Question 3, we conducted multilevel modeling using family-specific random intercepts to account for the non-independence of siblings’ data. We conducted two multilevel models with the PedsQL subscales as the outcome variables (psychosocial functioning and physical functioning). Given the small sample size, we decided to limit the number of predictor variables in each model to three predictors (using the “rule of thumb” of one predictor per 15 observations). The two differential parenting subscales (affection and control) were highly correlated (Supplementary Table 1), so only differential parental affection was included in the multilevel models to reduce multicollinearity. The other predictor variables were sibling age and caring responsibilities. We calculated the marginal and conditional R² for each multilevel model using the equations presented in Nakagawa et al. (2013).

Results

We invited 83 eligible siblings to participate, of whom 45 completed the questionnaire (response rate = 54.2%). Participants were aged 12–24² (M = 15.40, SD = 3.31), and over half were female (n = 27, 60.0%). Two siblings (4.4%) were born overseas, and 20 siblings (44.4%) reported that at least one of their parents was born overseas. Most of the siblings were older than their brother/sister with a chronic illness (n = 33, 73.3%).

In our sample, there were four pairs of siblings. Thus, the 45 siblings represented 41 unique families. The children with chronic illness were aged between 2 and 23 years (M = 12.61, SD = 4.13); twenty-four (58.5%) were male and 17 (41.5%) were female. Most of the siblings’ parents were married or living together (n = 35, 85.4%) and five reported their parents were divorced or separated (12.2%). Siblings reported that their brother/sisters’ illnesses were cancer (n = 11, 26.8%), cystic fibrosis (n = 7, 17.1%), kidney disease (n = 6, 14.6%), a non-cancer blood disorder (n = 5, 12.2%), epilepsy (n = 4, 9.8%), a gastrointestinal disorder (n = 3, 7.3%), and other (e.g., Wiskott–Aldrich Syndrome) (n = 5, 12.2%)

Research question 1: What are siblings’ caring responsibilities?

Twenty-six siblings (57.8%) reported that they engaged in caring responsibilities “sometimes,” “often,” or “very often.” Caring responsibilities are summarized in Table 1. Siblings’ most commonly reported caring responsibilities were “Look after them when your parents are away or busy” (n = 26, 57.8%) and “Remind them to take their medication” (n = 18, 40.0%). Siblings reported engaging in a median of four responsibilities (range = 1–12).

Siblings who were older than their affected brother/sister were more likely to provide care (frequency = 23) than siblings who were younger than their affected brother/sister (frequency = 4) (χ²(1, 41) = 3.93, p = .047). Undertaking caring responsibilities was not related to siblings’ sex, sibling age, parents’ marital status, years since their brother/sister’s diagnosis, or their brother/sister’s sex (all p’s>.05). Age of the affected brother/sister was related to siblings’ caring responsibilities. Siblings who had caring responsibilities reported their brother/sister’s average age was 11.15 years (SD = 4.05); siblings without caring responsibilities reported their brother/sister’s average age was 15.43 years (SD = 2.59; t(39) = 3.58, 95% CI [1.87, 6.70], Cohen’s d = 1.26).

Siblings were generally “happy” to have these responsibilities (M = 82.18, SD = 16.17), which did not differ according to their socio-demographic characteristics (all p’s >.05).

Research question 2: What are siblings’ current levels of emotional distress and psychosocial functioning?

Figure 1 shows the prevalence of clinically relevant distress (n = 10, 25%), anxiety (n = 17, 42.5%), depression (n = 8, 20%), anger (n = 9, 22.5%), and need for help (n = 12, 30%) among the siblings. Siblings’ average physical functioning (M = 88.94, SD = 13.90) was comparable to published norms for the PedsQL (M = 86.86, SD = 13.88) (Varni et al., 2003). Siblings’ psychosocial functioning (M = 71.90, SD = 16.68) was lower than published norms for the PedsQL (M = 80.73, SD = 14.70) (Varni et al., 2003). Figure 1 shows the prevalence of siblings below the PedsQL cut-offs: 4 siblings (8.9%) reported “at-risk” physical functioning, and 13 siblings (28.9%) reported “at-risk” psychosocial functioning.

Figure 1.

Siblings’ clinically relevant emotional distress and “at-risk” health-related quality of life.

Siblings’ scores on the emotion thermometers and their physical and psychosocial functioning were not related to whether the sibling was older or younger than their affected brother/sister, their age, the age of their affected brother/sister, the sex of the sibling, the sex of their affected brother/sister, their parents’ marital status, or the number of years since their brother/sister’s diagnosis (all p’s>.05).

Research question 3. How do siblings’ caring responsibilities and psychosocial functioning relate to their emotional distress, relationship with their affected brother/sister, perceived differential parental treatment, and coping strategies?

Table 2 shows how siblings’ emotional distress, relationship with their brother/sister, perceived differential parenting, and coping differ for siblings who reported having caring responsibilities and those who reported that they did not have caring responsibilities. Siblings engaged in caring responsibilities reported lower anxiety symptoms (t(39) = 2.53, 95% CI [1.09, 4.14], Cohen’s d = 1.10), lower need for help (t(39) = 2.13, 95% CI [0.31, 3.44], Cohen’s d = 0.75), and greater use of problem-focused coping strategies (t(39) = 2.42, 95% CI [0.26, 2.89], Cohen’s d = 0.78) than siblings not engaged in caring. Caring responsibilities were also related to more positive sibling–sibling relationships. Companionship (t(39) = 2.23, 95% CI [0.02, 6.04], Cohen’s d = 0.64) and teaching/directiveness (t(39) = 4.86, 95% CI [2.94, 7.71], Cohen’s d =1.44) were higher among siblings who reported caring responsibilities than those who did not.

Table 2.

How caring responsibilities relate to sibling relationships, differential parenting, siblings’ emotional functioning, and coping.

	Caring responsibilities
	Never/hardly ever, M (SD.)	Sometimes to very often, M (SD.)	t-test, 95% CI, Cohen’s d
Sibling relationships
Companionship	22.36 (5.17)	25.37 (4.19)	t = 2.23, 95% CI [.02, 6.04], Cohen’s d = 0.64
Empathy	23.14 (2.48)	23.44 (2.33)	t = .76, 95% CI [−1.28, 1.89], Cohen’s d = 0.12
Rivalry	14.43 (4.09)	14.63 (5.39)	t = 0.40, 95% CI [−3.53, 3.12], Cohen’s d = 0.04
Avoidance	6.50 (2.35)	6.04 (2.05)	t = 0.73, 95% CI [−.97, 1.90], Cohen’s d = 0.21
Teaching/directiveness	9.86 (4.09)	15.19 (3.29)	t = 4.86, 95% CI [2.94, 7.71], Cohen’s d = 1.44
Differential parenting
Differential affection	11.29 (1.64)	10.33 (0.68)	t = 2.09, 95% CI [−.019, 1.92], Cohen’s d = 0.76
Differential control	7.36 (1.33)	7.67 (1.24)	t = 0.74, 95% CI [−0.54, 1.16], Cohen’s d = 0.24
Emotional functioning
Distress	2.86 (2.57)	2.11 (1.93)	t = 0.60, 95% CI [−.70, 2.19], Cohen’s d = 0.33
Anxiety	5.50 (2.57)	2.89 (2.14)	t = 2.53, 95% CI [1.09, 4.14], Cohen’s d = 1.10
Depression	1.93 (2.95)	1.26 (1.81)	t = 1.40, 95% CI [−.83, 2.17], Cohen’s d = 0.27
Anger	2.36 (2.47)	2.63 (2.56)	t = 0.32, 95% CI [−1.41, 1.96], Cohen’s d = 0.11
Need for help	3.29 (2.98)	1.41 (1.95)	t = 2.13, 95% CI [.31, 3.44], Cohen’s d = 0.75
Coping
Avoidant	6.29 (2.16)	5.70 (1.03)	t= 0.95, 95% CI [ −.71, 1.88], Cohen’s d = 0.35
Problem-focused	7.43 (2.10)	9.00 (1.90)	t = 2.42, 95% CI [0.26, 2.89], Cohen’s d = 0.78

Boldface = statistically significant; 95% CI = 95% confidence intervals; degrees of freedom for all t-tests = 39.

Siblings’ “happiness” to engage in these caring responsibilities was related to their emotional distress. Siblings who reported lower “happiness” to care for their affected brother/sister, reported higher distress (r = −.38, 95% CI [−0.58, −0.12]) and higher depression (r = −.36, 95% CI [−0.64, −0.10]).

Caring responsibilities were not statistically related to psychosocial functioning (t(39) = 1.41, 95% CI [−3.49, 19.56], Cohen’s d = 0.46) or physical functioning (t(39) = 1.49, 95% CI [−3.80, 21.00], Cohen’s d = 0.56). In the multilevel models (Table 3), siblings reported lower psychosocial functioning (−6.61, 95% CI [−11.00, −2.21]) and physical functioning (−7.12, 95% CI [−10.08, −4.16]), when they perceived that their parents provide them with less affection than their brother/sister with a chronic illness. Caring responsibilities and sibling age were not related to their psychosocial or physical functioning in the multilevel models. The marginal R² for the psychosocial functioning model was 0.24, and the conditional R² was 0.45. For the physical functioning model, the marginal R² was 0.45 and the conditional R² was 0.47.

Table 3.

Multilevel models of sibling psychosocial and physical functioning.

	Psychosocial functioning	Physical functioning
	Estimate (SE), 95% CI	Estimate (SE)
Sibling age	0.58 (0.77), 95% CI [−0.99, 2.14]	−.39 (0.56), 95% CI [−1.51, 0.74]
Caring responsibilities	1.23 (4.76), 95% CI [−8.42, 10.87]	3.04 (3.29), 95% CI [−3.61, 9.68]
Differential parent affection	−6.37 (2.14), 95% CI [−10.70, −2.04]	−6.70 (1.54), 95% CI [−9.80, −3.60]

Boldface = statistically significant; 95% CI = 95% confidence intervals.

Discussion

In this study, we assessed siblings’ self-reported caring responsibilities, psychosocial functioning, coping and familial relationships, and how these factors were inter-related. We found that caring responsibilities were common (57.8%) among siblings of young people with chronic illness. Siblings who engaged in caring responsibilities reported lower anxiety, higher positive sibling–sibling relationships, and higher use of problem-focused coping than siblings not engaged in caring responsibilities. Siblings also reported lower psychosocial and physical functioning when they perceived their parents to provide them with less affection than their affected brother/sister. Our findings have implications for family-based interventions to help protect siblings from mental ill-health.

Siblings’ average psychosocial functioning was lower than published norms, and 28.9% were identified as at-risk for impaired psychosocial functioning (Varni et al., 2003). Also, 44.4% of siblings’ reported clinically relevant anxiety, and 20% reported clinically relevant depression. Anxiety and need for help were lower in siblings who reported having caring responsibilities for their affected brother/sister, compared with siblings who did not have caring responsibilities. Our finding that mental health was related to having caring responsibilities is consistent with Read et al. (2010) who found that siblings’ poor psychological functioning was related to less involvement with their brother/sister’s care.

Siblings who had caring responsibilities also reported more positive relationships with their affected brother/sister (specifically more companionship and teaching/directiveness). Prosocial behaviors have been found to be related to better mental health and better interpersonal relationships among adolescents (Oldfield et al., 2016). The act of providing care for their affected brother/sister may therefore have beneficial consequences for the siblings. Siblings who are not involved in caring responsibilities, however, may experience helplessness or an external locus of control, which are linked to poor mental health outcomes among adolescents (Sullivan et al., 2017). Alternatively, parents may be more likely to enlist the unaffected siblings to help with various caring responsibilities when they perceive these siblings to be functioning well. In other words, siblings who are already functioning well may have capacity to “take on” these caring responsibilities.

We found that siblings who had caring responsibilities reported more problem-focused coping than siblings who did not have caregiving responsibilities. Previous research shows that greater involvement with caring responsibilities may lead to greater illness knowledge among siblings, which has inconsistently been related to good sibling functioning as well as higher sibling anxiety (Houtzager et al., 2004; Wilkins and Woodgate, 2005; Williams et al., 2002). These findings suggest that factors such as problem-focused coping may moderate the relationship between caring responsibilities and sibling mental health. We were unfortunately unable to test this potential moderation given the small sample size. Nevertheless, we found that siblings who engaged in caring responsibilities but who were not “happy” to do so reported high scores of distress and depression on the emotion thermometers. As such, the way in which siblings perceive their caring responsibilities may play a role in their psychological functioning.

In the multilevel models, we found that siblings who perceived that their parents provided them with less affection than their affected brother/sister reported lower psychosocial and physical functioning than siblings who did not report differential parental affection. Previous research has consistently found that reduced parental attention is related to poor sibling functioning (Tregidgo and Elander, 2019; Wilkins and Woodgate, 2005). Parents may be overwhelmed with the demands for caring for their child with a chronic illness, as well as their own potential mental health concerns, and as such may not actively enquire about their unaffected child’s emotional and affection needs (Deavin et al., 2018; Fullerton et al., 2017). Similarly, siblings of young people with chronic illness may not want to burden their parents with their own emotional needs and concerns and thus avoid discussing their emotional experiences with their parents or asking for greater affection (Deavin et al., 2018; Fullerton et al., 2017).

Limitations

Our study benefitted from directly surveying siblings. Nevertheless, there were limitations to the study. The small sample of siblings precluded us from performing more complex statistical analysis on our data, including examining whether coping skills moderated the relationship between caring responsibilities and siblings’ mental health and functioning. The small sample also means that our findings should be interpreted with caution. We also performed multiple parametric tests as part of this study, so familywise error is a possibility and our results should be interpreted in light of this.

We primarily recruited siblings via their parents, which may account for the relatively low response rate as we cannot be certain that parents always passed on the study materials to their children. This method of recruitment may have also biased our sample as parents may have decided on behalf of their child that the study was not relevant to their family, or may have chosen not to invite siblings who they perceived to not be functioning well. As such, our sample may not be representative of the population and limits the generalizability of our findings. Also affecting the representativeness of our sample, only English-speaking families where invited to participate.

Most siblings reported they completed the questionnaire on their own (n = 35, 77.8%), yet 10 siblings (22.2%) reported they received help with at least some of the questionnaire. We did not ask siblings who helped them complete the questionnaire, but presumably parents helped in most cases which may limit the validity of some of the siblings’ responses, particularly to the parent–sibling relationship questions.

The illnesses which siblings reported their brother/sister had were quite varied, with presumably different prognoses and daily demands on the family. This is a limitation of the study, particularly considering that previous research has found illnesses which affect daily functioning are related to poorer sibling well-being than illnesses which do not affect daily functioning (Sharpe and Rossiter, 2002).

Finally, a control group would have strengthened our study. Several of the caring responsibilities we identified may be “typical” responsibilities which older siblings undertake for younger siblings. A control group would have helped to delineate caring responsibilities which are unique or more frequent among siblings of young people with chronic illness compared to siblings of young people without chronic illness. Nevertheless, the literature on young siblings’ caring responsibilities is limited, and thus, our data are an important addition to current knowledge.

Implications for practice

Siblings’ high rates of anxiety, and low psychosocial functioning, show the continued need for the development and dissemination of targeted mental health interventions. Our results show that siblings who do not engage in caring responsibilities may be less involved in their affected brother/sister’s life and this may make them vulnerable to poor emotional functioning. This could lead to feeling isolated within their own family, and the low use of problem-focused coping strategies may exacerbate this feeling (Deavin et al., 2018). Some parents may shield siblings from the medical realities of their brother/sister’s condition as a way to protect them and may discourage siblings from assisting with caring responsibilities (Deavin et al., 2018). However, to date, the evidence does not show that caring responsibilities can be harmful, and we have found that it may actually be beneficial. Indeed, greater involvement in their brother/sister’s lives could help siblings feel better informed and empowered (Houtzager et al., 2004; Kelada et al., 2020). Interventions may therefore aim to foster closer sibling-to-sibling relationships.

Interventions may also specifically target the sibling–parent relationship, and particularly the way they communicate with each other and express affection. Previous research shows that parents can feel overwhelmed and unsure of how to support the unaffected siblings (Branstetter et al., 2008). Parents may be concerned about treating their affected and unaffected children differently, but may not have the appropriate communication and supportive skills to counteract this (Branstetter et al., 2008). Parents need to be provided with tools to improve the way they validate, express affection to, and communicate with their unaffected children (Haukeland et al., 2020).

Interventions may also focus on increasing siblings’ use of problem-focused coping strategies such as making plans to cope with negative stimuli (Kelada et al., 2018). Problem-focused coping is a main focus of cognitive behavioral therapy (CBT) interventions (Plate and Aldao, 2017). As such, CBT interventions may be particularly valuable for siblings of young people with chronic illness, and early evidence has begun to show the efficacy of this approach (Haukeland et al., 2020). Based on current findings, changing the way in which siblings perceive their caring responsibilities may be one element of such interventions.

Conclusion

Caring responsibilities were common among adolescent siblings of young people with chronic illness and were related to low sibling anxiety and need for help. In addition, siblings’ health-related quality of life was related to perceived differential parent affection. Our findings have implications for family-based psychosocial interventions which target the sibling–parent relationship (including expressing affection) and the sibling–sibling relationship (including involving the sibling in the affected child’s life). Interventions may also focus on increasing siblings’ use of problem-focused coping strategies to better equip siblings to cope with current and ongoing challenges.

Supplemental Material

sj-pdf-1-chc-10.1177_13674935211033466 – Supplemental Material for Siblings of young people with chronic illness: Caring responsibilities and psychosocial functioning

Supplemental Material, sj-pdf-1-chc-10.1177_13674935211033466 for Siblings of young people with chronic illness: Caring responsibilities and psychosocial functioning by Lauren Kelada, Claire E Wakefield, Donna Drew, Chee Y. Ooi, Elizabeth E Palmer, Ann Bye, Sandra De Marchi, Adam Jaffe and Sean Kennedy in Journal of Child Health Care

Footnotes

Acknowledgements

The authors would like to thank all the siblings who participated in this study. We would like to thank Mark Donoghoe from Stats Central UNSW for statistical guidance and acknowledge Yuenn Teh Tong Tze, Lachlan Munro, Nicholas Handelsman, and Joanna Wu for their contributions to this study. Thank you to the SibStars team including Dr Tiina Jaaniste, Prof. Richard Cohn, Prof. Glenn Marshall, Prof. Tracey O'Brien, Dr Rani Sachdev, Ms Rebecca Macintosh, Ms Fleur Le Marne, Ms Erin Beavis, and Dr Tejaswi Kandula. We thank the following organizations for their support of this study: Siblings Australia, Cystic Fibrosis Australia, and the Ronald McDonald House Charities Australia. The authors also acknowledge the support of the Maridulu Budyari Gumal, The Sydney Partnership for Health, Education, Research & Enterprise (SPHERE) Kids to Adults (K2A) Clinical Academic Group.

Declaration of conflicting interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: Prof. Wakefield is supported by the National Health and Medical Research Council of Australia (APP1143767). The Behavioural Sciences Unit is proudly supported by the Kids with Cancer Foundation and by the Kids Cancer Alliance.

Ethical approval

This study was approved by the Sydney Children’s Hospital Human Research Ethics Committee. Approval number: LNR/18/SCHN/449.

Informed consent

All participants gave informed consent before taking part in the study.

Data availability statement

The data that support the findings of this study are available on request from the corresponding author. The data are not publicly available due to privacy or ethical restrictions.

ORCID iDs

Lauren Kelada

Sean Kennedy

Supplementary material

Supplementary material for this article is available online.

Notes

References

Andrews

Anderson

T. M.

Slade

, et al. (2008) Classification of anxiety and depressive disorders: problems and solutions. Depression and Anxiety 25(4): 274–281.

Australian Institute of Health and Welfare (2007) Young Australians: Their Health and Wellbeing 2007, Cat. Canberra: AIHW. no: PHE 87.

Australian Institute of Health and Welfare (2020) Australia’s Children, Cat. Canberra: AIHW. no. CWS 69.

Boyes

D’Este

Carey

, et al. (2013) How does the distress thermometer compare to the hospital anxiety and depression scale for detecting possible cases of psychological morbidity among cancer survivors?. Supportive Care in Cancer 21(1): 119–127.

Branstetter

Domian

Williams

, et al. (2008) Communication themes in families of children with chronic conditions. Issues in Comprehensive Pediatric Nursing 31(4): 171–184.

Brennan

Hugh-Jones

Aldridge

(2013) Paediatric life-limiting conditions: coping and adjustment in siblings. Journal of Health Psychology 18(6): 813–824.

Carver

(1997) You want to measure coping but your protocol’ too long: consider the brief cope. International Journal of Behavioral Medicine 4(1): 92–100.

Chikhradze

Knecht

Metzing

(2017) Young carers: growing up with chronic illness in the family-a systematic review 2007-2017. Journal of Compassionate Health Care 4(12): 1–16.

Daniels

(1986) Differential experiences of siblings in the same family as predictors of adolescent sibling personality differences. Journal of Personality and Social Psychology 51(2): 339–346.

10.

Deavin

Greasley

Dixon

(2018) Children’s perspectives on living with a sibling with a chronic illness. Pediatrics 142(2): e20174151.

11.

Fullerton

Totsika

Hain

, et al. (2017) Siblings of children with life-limiting conditions: psychological adjustment and sibling relationships. Child: Care, Health and Development 43(3): 393–400.

12.

Gold

Treadwell

Weissman

, et al. (2008) An expanded transactional stress and coping model for siblings of children with sickle cell disease: family functioning and sibling coping, self-efficacy and perceived social support. Child: Care, Health and Development 34(4): 491–502.

13.

Gomez

Mclaren

(2006) The association of avoidance coping style, and perceived mother and father support with anxiety/depression among late adolescents: applicability of resiliency models. Personality and Individual Differences 40(6): 1165–1176.

14.

Haukeland

Czajkowski

Fjermestad

, et al. (2020) Evaluation of “SIBS”, an intervention for siblings and parents of children with chronic disorders. Journal of Child and Family Studies 29(8): 2201–2217.

15.

Henderson

Reiss

, et al. (1999) Adolescent siblings in stepfamilies: family functioning and adolescent adjustment. Monographs of the Society for Research in Child Development 64(4): 26–49.

16.

Horwitz

Hill

King

(2011) Specific coping behaviors in relation to adolescent depression and suicidal ideation. Journal of Adolescence 34(5): 1077–1085.

17.

Houtzager

Oort

Hoekstra-Weebers

JEHM

, et al. (2004) Coping and family functioning predict longitudinal psychological adaptation of siblings of childhood cancer patients. Journal of Pediatric Psychology 29(8): 591–605.

18.

Hunt

Levine

Naiditch

(2005) Young Caregivers in the US: Findings from a national survey. Bethesda, MD, USA: National Alliance for Caregiving, in collaboration with United Hospital Fund.

19.

Incledon

Williams

Hazell

, et al. (2015) A review of factors associated with mental health in siblings of children with chronic illness. Journal of Child Health Care 19(2): 182–194.

20.

Jones

Reilly

(2016) Parental anxiety in childhood epilepsy: a systematic review. Epilepsia 57(4): 529–537.

21.

Kale

Siğirtmaç

(2020) The participation of children in caregiving of their siblings with special needs and peer relationship in rural Turkey. Early Child Development and Care. Advance online publication.

22.

Kelada

Hasking

Melvin

(2018) Adolescent NSSI and recovery. Youth & Society 50(8): 1056–1077.

23.

Kelada

Wakefield

Cruz Silva

, et al. (2020) Camps for children with cancer and their families: a systematic review of psychosocial and physical impacts. Journal of Developmental & Behavioral Pediatrics 41(2): 145–156.

24.

Knecht

Hellmers

Metzing

(2015) The perspective of siblings of children with chronic illness. Journal of Pediatric Nursing 30(1): 102–116.

25.

Long

Lehmann

Gerhardt

, et al. (2018) Psychosocial functioning and risk factors among siblings of children with cancer: an updated systematic review. Psycho-oncology 27(6): 1467–1479.

26.

Long

Marsland

(2011) Family adjustment to childhood cancer: a systematic review. Clinical Child and Family Psychology Review 14(1): 57–88.

27.

Long

Marsland

Wright

, et al. (2015) Creating a tenuous balance. Journal of Pediatric Oncology Nursing 32(1): 21–31.

28.

Lummer-Aikey

Goldstein

(2020) Sibling adjustment to childhood chronic illness: an integrative review. Journal of Family Nursing. Advance online publication.

29.

Madan-Swain

Sexson

Brown

, et al. (1993) Family adaptation and coping among siblings of cancer patients, their brothers and sisters, and nonclinical controls. The American Journal of Family Therapy 21(1): 60–70.

30.

Nakagawa

Schielzeth

(2013) A general and simple method for obtainingR2from generalized linear mixed-effects models. Methods in Ecology and Evolution 4(2): 133–142.

31.

Nielsen

Mandleco

Roper

, et al. (2012) Parental perceptions of sibling relationships in families rearing a child with a chronic condition. Journal of Pediatric Nursing 27(1): 34–43.

32.

Oldfield

Humphrey

Hebron

(2016) The role of parental and peer attachment relationships and school connectedness in predicting adolescent mental health outcomes. Child and Adolescent Mental Health 21(1): 21–29.

33.

Parker

Houghton

Bichard

, et al. (2020) Impact of congenital heart disease on siblings: a review. Journal of Child Health Care 24(2): 297–316.

34.

Plate

Aldao

(2017) Emotion regulation in cognitive-behavioral therapy. In: Hofmann

Asmundson

GJG

(eds), The Science of Cognitive Behavioral Therapy. San Diego: Academic Press, pp. 107–127.

35.

Rauer

Volling

(2007) Differential parenting and sibling jealousy: developmental correlates of young adults’ romantic relationships. Personal Relationships 14(4): 495–511.

36.

Read

Kinali

Muntoni

, et al. (2010) Psychosocial adjustment in siblings of young people with Duchenne muscular dystrophy. European Journal of Paediatric Neurology 14(4): 340–348.

37.

Roth

Kornblith

Batel-Copel

, et al. (1998) Rapid screening for psychologic distress in men with prostate carcinoma. Cancer 82(10): 1904–1908.

38.

Schaffer

Pritchard

(2003) Impact of stress on health and coping tactics in relation to sex. Psi Chi Journal of Psychological Research 8: 12–20.

39.

Sharpe

Rossiter

(2002) Siblings of children with a chronic illness: a meta-analysis. Journal of Pediatric Psychology 27(8): 699–710.

40.

Sullivan

Thompson

Kounali

, et al. (2017) The longitudinal association between external locus of control, social cognition and adolescent psychopathology. Social Psychiatry and Psychiatric Epidemiology 52(6): 643–655.

41.

Tregidgo

Elander

(2019) The invisible child: sibling experiences of growing up with a brother with severe haemophilia-An interpretative phenomenological analysis. Haemophilia 25(1): 84–91.

42.

Varni

Burwinkle

Seid

, et al. (2003) The PedsQL* 4.0 as a pediatric population health measure: feasibility, reliability, and validity. Ambulatory Pediatrics 3(6): 329–341.

43.

Varni

Seid

Kurtin

(2001) PedsQL 4.0: reliability and validity of the pediatric quality of life inventory version 4.0 generic core scales in healthy and patient populations. Medical Care 39(8): 800–812.

44.

Vermaes

IPR

Van Susante

AMJ

Van Bakel

HJA

(2011) Psychological functioning of siblings in families of children with chronic health conditions: a meta-analysis. Journal of Pediatric Psychology 37(2): 166–184.

45.

Volling

Blandon

(2005) Positive indicators of sibling relationship quality: the sibling inventory of behavior. In: What Do Children Need to Flourish? Boston, MA: Springer, pp. 203–219.

46.

Wakefield

Sansom-Daly

Mcgill

, et al. (2015) Online parent-targeted cognitive-behavioural therapy intervention to improve quality of life in families of young cancer survivors: study protocol for a randomised controlled trial. Trials 16: 153.

47.

Webster

(2018) Siblings' caring roles in families with a child with epilepsy. Sociology of Health & Illness 40(1): 204–217.

48.

Wilkins

Woodgate

(2005) A review of qualitative research on the childhood cancer experience from the perspective of siblings: a need to give them a voice. Journal of Pediatric Oncology Nursing 22(6): 305–319.

49.

Williams

Graff

, et al. (2002) Interrelationships among variables affecting well siblings and mothers in families of children with a chronic illness or disability. Journal of Behavioral Medicine 25(5): 411–424.

50.

Wilson

Pritchard

Revalee

(2005) Individual differences in adolescent health symptoms: the effects of gender and coping. Journal of Adolescence 28(3): 369–379.

51.

Zwahlen

Hagenbuch

Carley

, et al. (2008) Screening cancer patients' families with the distress thermometer (DT): a validation study. Psycho-oncology 17(10): 959–966.

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