Table 5. Stream three: The views and experiences of young people, parents and healthcare professionals mapped against two-dimensional theoretical framework.

Environment	Transition conditions
	Empowerment	Information	Communication	Independent support	Mutual / peer support networks	Education support	Handover between child and adult services	Transition Timing	The role of parents	Adult clinic environments	Independence and adherence
Individual (Young Person)	Few patients felt prepared for transition [46]	YP were 'told the truth' more readily in adult clinics which they found 'scary' but appreciated openness which for some was overdue [49]	Channels need to be engaging and tailored to YPs’ needs [48]	Experienced support workers valued by YP as friends dispensing non-clinical, non-family advice [52]	Less formal support networks—around understanding and sharing experiences—valued by YP [48] [52]	The age of onset, the timing of disruption, and the cumulative effect of long and frequent disruptive spells, predict educational outcomes. Children suffering from CKD pre-puberty have poorer attainment [33,47]	YP are concerned about not knowing what to expect in adult clinics, or have misconceptions [49]	Timing of transfer should be an individual choice based on maturity and 'being ready' [49]	YP want their parents to be actively involved during transition [46]	Few YP rated adult clinics highly [46]. Lack of pastoral assistance in adult care [52]. Impersonal and brutal [47] "Felt like being dumped" [50]	Non-compliance mainly attributed to 'forgetfulness' but alcohol and peer pressure also noted [49]
	YP with CKD have to rely on parental support more than their peers [52]	Info for YP needs to be tailored to life-changes outside of their health needs such as coping at college / university. Lifestyle info. becomes increasingly important with maturation [50]	Centring on the care of the YP means tapping into their most influential sources, such as friends and family. [52]	Non-clinical support workers valued highly by YP as providers of support and pragmatic advice. Holistic support—other areas of life—non-health issues [52]	Access to other young renal patients is essential [52]	YP with CKD diagnosis before age 12 suffer from poor educational and employment outcomes [33]	72% of YP with CKD did not meet anyone from adult service before transfer. 24% said they would like to meet new hospital clinicians [50]	YP talked about being 'thrown out' of paediatric settings [48]	Most YP appreciated taking more of a role but with reassurance of parental 'back-up'. [49]	YP feel that clinics don't realise that they have a life outside the illness. Jobs, social lives etc. can be seen as more important than appointments [48]	Increasing exertion of agency leading to risk taking for some YP, others more cautious. [47]
	Struggle between YP taking more responsibility and parents wanting to retain control is the key battle [52]		Under 18's rely more on websites and Facebook. They don't respond to information from HCP's. Older YP prefer to receive info from HCP's [50]		35% of YP would like to meet other YP with CKD. 32% would not (Woodland 2015)					For the YP, a new adult hospital where they are now the youngest patient and are sitting in the waiting room with older kidney patients is very daunting; it feels different, familiar people are not present to comfort them, and new processes aren’t explained in the way they are used to. [48]	Adult clinicians perceived to be taking punitive approach to non-adherence [47]
	Some YP feel powerless about being told at what age they can manage their condition, while others worried about taking responsibility for their conditions with life-threatening consequences [47]	Learning from other patients of a similar age about CKD and treatment [51]			Participants felt more confident socialising with peers who had CKD. Some felt that hearing other patients' stories enabled them to positively reflect. [2]					YP may feel less important at local adult unit. Turnover of HCP's and lack of familiarity can be alarming. [53]
	Depression and lack of emotional support likely to delay progress towards autonomy [47]				Being with peers with similar experiences alleviated emotional burden [51]					45% of YP over 18 would like to attend a young adult clinic. 28% would not. [50]
							YP expressed significant anxiety about appointments, blood tests and biopsies in adult clinics [49]			YP put off by adult clinics being 'full of old people' [49]. Hopes of a normal life ahead dashed by seeing older, sick renal patients [47]
Microsystem (Family, peers, health practitioners)	Children’s services balancing autonomy with parental involvement during transition [46]	Children’s services did not always equip YP with the knowledge and skills required to negotiate health systems [46]	YP needed time to talk about transfer with doctors and nurses [46]	Experienced renal support workers can provide families with important emotional support during transition. [48]	Parents often feel isolated after transition. Support networks of other CKD experienced parents needed [48]		YP need to 'feel handed-over' into care of adult team [49]	Decisions about timing of handover imposed by health professionals. [46]	Parents perceive practices in adult clinics as lack of continuity of care and become concerned [48]	Staff less personal, sometimes less sympathetic in adult clinics [49] Abruptness [52]	HCP's and parent's voices less likely to be heard during adolescence [53]
	YP emphasised the importance of a gradual shift in responsibility [49]	Parents say there is little to no guidance on helping a child with a long-term condition during transition [48]	Doctors in adult clinics expected them to have more knowledge about their condition [49]	Some YP dismissive or skeptical about pyschological support / counselling (mental illness stigma?) [47]	Renal support networks aren't valued as highly as friendhip groups (online or otherwise) [52]		Moving into adult care often means loss of broader family support package [48]		Siblings suffer. Lack of attention can have very negative consequences on family life [48]	Families of CKD YP feel excluded even though they have wealth of knowledge and experience [48]	Conflicts between peer acceptance and treatment / medication regimes. Being labelled 'sick' set them apart. [64]
	Discreet parental support important but parents regaining control after set-backs can be dis-empowering. [48]		As YP get older they increasingly rely on friends for support, advice and information, but friends are not well-informed. Reliance on internet for information can be problematic [52]		Family support gradually replaced by support from friendship groups and / or partners [47]		Initiating a partnership between the parent and hospital will be important in ensuring the young adult has rounded support, and for the parent it is reassuring to have confirmation that they are carrying out their role [48]		Parents can struggle with the tension between pushing the young adult to be independent and being a protective parent [48]	Adult clinics focus on the autonomous individual and struggle to cope with strong parental involvement [53]
					For some, providing peer support gave them a sense of fulfilment [51]
	While YP appreciate being treated as an adult, they wanted some allowance made for their young age [49]				YP did not want support from other patients, especially older patients, or to make friends with their peers with ERF; they wanted 'normal' friends and eschewed those who were ill. [47]		Parents and YP would like a formal handover between child and adult services to include case history, roles and responsibilities [48]		YP positive about being able to talk more openly without parents but recognised that parents may find this change difficult [49]
Exosystem (family support networks, policy, funding)	No matter what their age, parents find it difficult to step away [48]		Many YP transferred did not know the name or contact number of person at adult clinic on their first visit [46].				Co-ordination between hospitals and importance to YP about 'feeling handed-over' [49]	Instances of inflexible policy of transferring YP at 18 [46]	Parents of YP with CKD feel their experiences and needs are unique and find ‘general support’ (counselling from the GP for instance) to be of little use, as it doesn’t take into consideration the multi-faceted and on-going struggle they feel they face [48]
	YP may feel embarrassed to go to an adult clinic with their parents [53]	More information about different 'care culture' of adult clinics needed YP want their parents to be actively involved [46]						Children’s services need to accept that not all patients are ready to transfer at age 18 [49]		Culture of adult clinics de-humanising and lonely [46]
Macrosystem (Societal norms, culture, ideologies)	Dependant on their individual charactersitics and comorbitities, YP with CKD may be more or less capable of fitting with societal norms around taking responsibility for themselves. [49] [48] [46]							The societal expectation that at age 18 children become adults does not necessarily sit comfortably with the needs of this group of YP [49] [48] [46]			External pressures—exams, social life—impact on adherance [49] [53]