One social network, two perspectives: Social networks of people with Down syndrome based on self‐reports and proxy reports

Abstract

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Quality of life in adults with Down syndrome: A mixed methods systematic review

“…Eight studies documented that regardless of the independence of adults with DS, some required support in going for walks, going to the cinema, staying healthy, seeing a doctor [ 63 , 98 ], emotional support [ 63 ], participation in extracurricular activities [ 95 ], personal care [ 74 , 100 ], handling money [ 88 , 100 ], respite care, using public transport [ 78 , 100 ] and want to continue living with parents [ 64 ]. In three studies, most adults with DS became more independent as they transitioned to adulthood and caregivers recognised the importance to their adults with DS QoL [ 91 , 96 , 98 ]; while one study documented that most mothers did not remember whether young adults with DS played an integral part of the transition process or were actively involved in decision making [ 78 ].…”

“…Seven studies reported that adults with DS were passionate about their friendships and rated them as a major contributor to their sense of social inclusion, acceptance, and self-esteem [ 62 , 63 , 68 , 91 , 95 , 96 , 98 ]. However, some studies reported that adults with DS had few friends [ 63 , 93 ], 40% wanted more friends or had no friends [ 78 , 87 ], whereas other studies found adults with DS had many friends [ 98 ] or made friends easily [ 76 ].…”

“…Although some mothers mentioned their adults with DS made friends from their siblings’ friends [ 79 ]. One study using both self- and proxy reports found that adults with DS were more likely to nominate friends and colleagues on their social networks rather than proxies (family members), while proxies were more likely to nominate paid staff and organisations [ 96 ]. In the same study, network members such as family, friends, paid staff, work, organisation, neighbours had an impact on adults with DS in the past and play an important future role [ 96 ].…”

“…One study using both self- and proxy reports found that adults with DS were more likely to nominate friends and colleagues on their social networks rather than proxies (family members), while proxies were more likely to nominate paid staff and organisations [ 96 ]. In the same study, network members such as family, friends, paid staff, work, organisation, neighbours had an impact on adults with DS in the past and play an important future role [ 96 ]. In one study, a six-session programme was designed to help young adults with DS distinguish between friend and boyfriend/girlfriend, effects of jealousy, hurts and trust in relationships, family dynamics, recognising the qualities of a good friend, the impact of gender roles on relationships, and the nature of adult relationships and marriages and found that it helped them to better understand friendship and family life [ 65 ].…”

“…Two studies reported that adults with DS participated in sexual education [ 80 , 98 ]. One parental-proxy reported study found that adults with DS were independent but did not engage in sexual relationships [ 80 ], another study reported that mothers did not consider their adults with DS relationships important [ 96 ]. In another study, a mother found a way to support her son with DS who wanted to live with his girlfriend with DS; however, both required assistance with their daily activities such as preparing food, dressing and getting ready for work [ 83 ].…”