Based on carefully selected in- and exclusion criteria 11 articles were used for answering the research questions, of what characterizes social support that children with severe physical long-term health conditions perceive (1) as provided and (2) as helpful to them. Results of this systematic literature review were structured according to different factors of social support. All study samples included children between the ages of five-12 years and are from here onwards only referred to as “children”. An overview of authors, publication years, sample with age group and diagnoses, aim, major finding, and quality rating of the included articles is presented in Appendix 5. Difference between results based on diagnoses or ethnicity were not found.
Four articles had children’s perceived social support as a primary outcome (Einberg et al., 2014; Mitchell et al., 2006; Pendley et al., 2002; Stewart et al., 2011). Two articles measured children’s perceived social support explicitly as a secondary measure (Battles & Wiener, 2002; Kiernan et al., 2005). Study outcomes of the remaining five articles were self-reported overall or spiritual quality of life with a component of social support (Eiser et al., 2004; Kamper et al., 2010; Pendleton et al., 2002), and outcomes associated with psychosocial adjustment and learning within the family and peer environment (MacDonald & Greggans, 2010; Martin et al., 2010). Tools used were focus groups with three or four children (Einberg et al., 2014; Martin et al., 2010), unstructured interviews, or previously designed questionnaires (SSSC, Harter, 1985; DSSI, La Greca, Swales, Klemp, & Madigan, 1988) with follow-up interviews, which were sometimes supported by children’s drawings for better understanding (Pendleton et al., 2002).
Perceived social support providers
Four major groups of social support providers as perceived by children were found: family, peers, professionals, and spiritual powers. Hereby, some support providers were more prevalent in specific life areas. Life areas in which social support was perceived were grouped into (1) everyday life, (2) coping with illness and being in the hospital, (3) school context, and (3) within summer camps. Perceived social support sources in relation to areas of social support are reported in Appendix 6.
The major source of social support as perceived by children with various kinds of severe chronic diseases was their family. Compared to other social support providers, family was especially important within everyday life and dealing with ones’ illness in hospitals and in daily life. Six of the studied articles reported the importance of family (Eiser et al., 2004; Kamper et al., 2010; Martin et al., 2010; Mitchell et al., 2006; Pendley et al., 2002; Stewart et al., 2011), whereby five of them stressed the importance of parents as support providers. Mothers were mentioned as the most important social support providers by children in one study (Stewart et al., 2011). Apart from parents, siblings and other relatives were also mentioned (Kamper et al., 2010; Pendleton et al., 2002).
The other major social support provider group was made up by peer relations of different kinds. Peers were mentioned and rated as being important by children across all four life situations. Peer relations ranged from friendships with healthy and ill children of similar ages (Battles & Wiener, 2002; Einberg et al., 2014; Pendley et al., 2002) to peer groups in a more artificial setting (i.e. befriender programs, support groups, and summer camps) (Kiernan et al., 2005; MacDonald & Greggans, 2010; Mitchell et al., 2006; Stewart et al., 2011) to relations with people in one’s community (Kamper et al., 2010; Martin et al., 2010; Pendleton et al.,2002). One study also mentioned children perceiving social support from pets (Kamper et al., 2010).
Children in two studies perceived social support from health staff, like doctors and nurses (Mitchell et al., 2006; Stewart et al., 2011) in coping with their illness in hospital settings and returning back home and to school. Perceived social support from professionals within the school setting was also reported by two articles (Martin et al., 2010; Mitchell et al., 2006).
Two articles studied support perceived by children through believing in and interacting with God or another spiritual power (Kamper et al., 2010; Pendleton et al., 2002). This social support was mainly perceived for coping with one’s illness and in everyday life.
Perceived types of social support
Perceived social support, as reported by severely chronically ill children in various studies, covered all four subtypes of social support: emotional, instrumental, informational, and appraisal support (see Appendix 7). Some articles also provided ratings of perceived social support.
Children in all reviewed studies reported their perceived social support as being relational to significant others in their life. Companionship from family, friends, and pets with aspects of love, caring, and empathy were most important (Battles & Wiener, 2002; Einberg et al., 2014; Kamper et al., 2010). The feeling of not being alone with their illnesses and being able to rely on others (e.g.: family, God/spiritual power) for support was a repeating concept reported by these children (Einberg et al., 2014; Eiser et al., 2004; Kamper et al., 2010; Kiernan et al., 2005; Pendleton et al., 2002). Understanding children (Mitchell et al., 2006), acknowledging their fears and concerns, and providing emotional support were perceived as supportive (Kamper et al., 2010; Pendley et al., 2002; Stewart et al., 2011). God/spiritual power was seen as providing children with social support by being with them, protecting them, and comforting them (Pendleton et al., 2002). Children felt like they could rely on God/spiritual power to help them. Praying, going to church or just thinking of God were mentioned as having contact to God/spiritual power (Kamper et al., 2010; Pendleton et al., 2002) Children perceived close relationships as especially supportive when they contained certain components: common interests and experiences, mutual empathic actions, and mutual trust and understanding (Einberg et al., 2014; Kiernan et al., 2005). More specifically, having a connection to a friend via shared time and preferences, respecting and supporting each other, and being able to rely on the other person are important. For developing these equal and mutual commitments digital and face-to-face interactions are used.
Children reported parental supervision and active support in health-related issues, like medication taking (Martin et al., 2010; Pendley et al., 2002). Mitchell et al. (2006) further reported that children perceived family support for helping care for them especially in the hospital setting. Health staff was of help to become independent.
Children perceived the significance of social support in a faith community or religious affiliate, like prayers, rituals and tangible aids brought by others, and God himself. For example, family members, friends, or religious affiliates mediated in the relationships to God and prayed for the sick children (Kamper et al., 2010; Pendleton et al., 2002). Available tangible aid was perceived in food, clothes, or presents from the faith community (Pendleton et al., 2002). This spiritual social support derived from a faith community was reported by 72% of the sample in Pendleton et al.’s study (2002). Direct support from God/spiritual power was perceived as God making children feel better and acting on their requests (Pendleton et al., 2002).
Instrumental support derived from peer relationships were commonly spent activities and mutual helping (Kiernan et al., 2005; MacDonald & Greggans, 2010). Activities were considered to be welcome distractions from everyday things and relieving boredom during hospitalization.
The domain of informational support was characterized by advice and information from other’s in similar situations, family, and health staff. Informational support about the disease and management strategies was mostly perceived from health care professionals (Mitchell et al., 2006) and partly by family/mothers (Pendley et al., 2002; Stewart et al., 2011). Information was often reported as provided by health staff directly in an understandable language (Mitchell et al., 2006). Nurses and doctors were perceived to spend a lot of time on explaining issues, providing advice concerning treatment and side-effects and considering patients’ wishes and feelings. This was seen as social support as it extended the required level of information by additional possibilities for coping mechanisms and time (Mitchell et al., 2006). Lastly, children perceived hospital staff to help them become more independent when returning home after a hospital stay.
Appraisal was perceived from peers saying positive things to the children instead of displaying negative attitudes (Einberg et al., 2014). From this, children drew social comparisons (Eiser et al., 2004) and learned being more confident and seeing that they were not alone in their fight against their illness (Kiernan et al., 2005). Peers further helped children to dare to do more things, than they would have with their parents (MacDonald & Greggans, 2010).
When disclosing to others about their illness, children perceived more social support (Battles & Wiener, 2002). Children perceived speaking about personal and illness-related issues to other children in similar illness situation as helpful support and advice (Eiser et al., 2004; MacDonald & Greggans, 2010; Stewart et al., 2011). Talking to and receiving reassurance from healthy peers was also indicated to be social support for severely sick children (Mitchell et al., 2006).
Further guidance was perceived from spiritual powers, such as God (Pendleton et al., 2002). Appraisal support drawn from faith was believing in an afterlife, praying for normalcy, and using spiritual reappraisal of negative events, such as being tested with their illness (Kamper et al., 2010). Appraisal social support was barely reported as being of importance by children between five and 12 years of age.
Evaluations of perceived social support
Evaluations were presented in some of the reviewed articles. Table 3 contains the evaluations based on combined ratings by children and frequency of mentioning of the four social support types and support providers.
As depicted in Table 3, family was perceived as most important for providing emotional and instrumental support (Mitchell et al., 2006; Pendley et al., 2002; Stewart et al., 2011). Statements as “Seeing my mom […]” and “Knowing that there is someone out there who cares” (Kamper et al., 2010, p. 4) exemplify the importance of relations to other’s for children’s well-being. Parental social support as perceived by children appears to have a more constant course than the social support from friends or classmates (Battles & Wiener, 2002). Especially parents staying with them and helping care for them in health-related matters was regarded with satisfaction by children (Martin et al., 2010, Mitchell et al., 2006).
The perceived reciprocity of friendships helped children cope better (Eiser et al., 2004; MacDonald & Greggans, 2010; Mitchell et al., 2006) (e.g. “you can cope better in life when you have friends that are loyal to you, even when you are not in a good mood”) (Kiernan et al, 2005; p. 738). Activities with peers were evaluated as being fun and enjoyable (MacDonald & Greggans, 2010) and were often welcome distractions from their illnesses and daily struggles. Faith communities were further rated as beneficial in that children felt part of a group and thought other’s prayers helped them.
Some children, however, had neutral or negative views on peer support. Kiernan et al. (2005) found that about one third of their sample reported not learning and deriving anything from social interactions with friends, while the other two thirds in this study had enduring positive outcomes related to their personal growth in daily life and dealing with their illnesses. Being harassed and bullied due to one’s illness was further negatively evaluated and led to feelings of exclusions and fear of confiding in others (Stewart et al., 2011).
Children evaluated perceived information and advice from professionals as especially helpful and valuable when it was directly conveyed to them (Mitchell et al., 2006). Doctors and nurses making time to give advice about making treatment more bearable (80%) and possible side effects was perceived as helpful. Listening to the children’s wishes and feelings was significant. When it came to leaving the hospital to go back home, children perceived hospital staff as supporting them to reach their anticipated degree of independence (75%, Mitchell et al., 2006).
Teacher support was perceived as being fairly constant over time and thus helpful, especially when compared to peer support (Battles & Wiener, 2002). 74% of children perceived teachers as understanding and positive about changed appearances when returning to school (Mitchell et al., 2006).
Of those children that reported to pray or meditate 82% reported that it helped them (Kamper et al., 2010). Pendleton et al. (2002) reported that children perceived God as supportive in health related issues by making them feel better mentally and physically.
Support needs, wishes and fears
Meeting other children with and without similar diagnoses was reported as an unmet need by some children (Kiernan et al., 2005; Mitchell et al., 2006), as opportunities were perceived to be scarce. Support from hospital staff to provide or facilitate meetings was wished for. Stewart et al. (2011) reported that 75% of interviewed children in their study preferred peer contact with older children in similar situations to derive emotional support from them.
Children’s wishes concerning education and information were mostly on community level (Martin et al., 2010). Educating teachers and community about health risks for ill children like smoking cessation education and reduction of general smoking in public places were identified. While Stewart et al. (2011) reported wishes for information from older peers, Kiernan (2005) found that children wanted similar aged peers to interact and talk with.
Related to community education, children wished for more active support from individuals in their healthy community (e.g. smoking cessation). The wish for recognition of their illness and readily availability of support from others was insufficient for many (Martin et al., 2010).
Perceived fears related to social support were “not finding peers” for social interactions and support (5.3%) and being without one’s family-support (8.1%) (Kiernan et al., 2005). Further, children feared harassment and bullying in schools because of their illness (Stewart et al., 2011).
Table of Content
1.1 Severe physical health conditions
1.2 Social support
1.3 Social support and health
1.4 Perceived social support
1.5 Children’s perceptions
1.6 Ill children’s perceived social support
1.8 Research questions
2.2 Search strategy
2.3 Selection criteria
2.4 Selection process
2.5 Data extraction
2.6 Quality assessment
2.7 Data analysis
3.1 Perceived social support providers
3.2 Perceived types of social support
3.3 Evaluations of perceived social support
3.4 Support needs, wishes and fears
4.1 Perceived social support
4.2 Evaluating perceived social support
4.3 Practical implications
4.4 Methodological discussion
4.5 Limitations and Research Implications
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Perceived Social Support of Children with Severe Chronic Physical Health Conditions A Systematic Literature Review