Table 1
Search strategies used to identify papers.
| Database | Search Date | Search Term | Total | Retained |
|---|---|---|---|---|
| MEDLINE | 15/09/15 | (MH Adolescent OR MH Young Adult OR MH Transition to Adult Care) NOT (MH Aged OR MH Middle Aged) AND (MH Patient-Centered Care OR MH Professional-Family Relations OR MH Personal Autonomy OR MH Patient Participation OR MH Professional-Patient Relations) | 4802 | 187 |
| EMBASE | 21/09/15 | (‘adolescent’/exp OR ‘young adult’/exp OR ‘transition to adult care’/exp) NOT (‘aged’/exp OR ‘middle aged’/exp) AND (‘holistic care’/exp OR ‘patient decision making’/exp OR ‘patient autonomy’/exp OR ‘personal autonomy’/exp OR ‘family centered care’/exp OR ‘patient participation’/exp OR ‘doctor patient relation’/exp) AND [embase]/lim | 1853 | 213 |
| CINAHL | 22/09/15 | ((MH “Adolescence”) OR (MH “Young Adult”)) NOT ((MH “Aged”) OR (MH “Middle Age”)) AND ((MH “Professional-Patient Relations”) OR (MH “Physician-Patient Relations”) OR (MH “Patient Centered Care”) OR (MH “Professional-Family Relations”) OR (MH “Family Centered Care”) OR (MH “Patient Autonomy”) OR (MH “Decision Making, Patient”)) | 3025 | 210 |
| PsycINFO | 28/09/15 | Index Terms: “client centered therapy” OR Index Terms: “client participation” OR Index Terms: “self determination” OR FirstPage: “patient-centered” OR FirstPage: “patient-centred” OR FirstPage: “patient centered” OR FirstPage: “patient centred” OR FirstPage: “person-centered” OR FirstPage: “person centered” OR FirstPage: “person centred” OR FirstPage: “person-centred” OR FirstPage: “family-centred” OR FirstPage: “family centred” OR FirstPage: “family-centered” OR FirstPage: “family centered” OR FirstPage: “physician-patient” OR FirstPage: “physician-family” OR FirstPage: “practitioner-patient” OR FirstPage: “practitioner-family” OR FirstPage: “clinician-patient” OR FirstPage: “clinician-family” OR FirstPage: “shared decision making” AND Age Group: Adolescence (13 to 17 yrs) OR Young Adulthood (18 to 29 yrs) AND NOT Age Group: Neonatal (birth to 1 mo) OR Infancy (2 to 23 mo) OR Preschool Age (2 to 5 yrs) OR Middle Age (40 to 64 yrs) OR Aged (60 yrs & older) OR Very Old (85 yrs & older) | 935 | 56 |
| Articles identified by hand | 50 | 50 | ||
| Total | 10665 | 716 |
Figure 1
Flow of articles through appraisal process.
Table 2
Modified CASP Tools used for quality appraisal.
| Qualitative Research Study | Qualitative Systematic Review | ||
| 1. | Was there a clear statement of the aims of the research? | 1. | Did the review address a clearly focused question? |
| 2. | Is a qualitative methodology appropriate? | 2. | Did the authors look for the right type of papers? |
| 3. | Was the research design appropriate to address the aims of the research? | 3. | Do you think all the important, relevant studies were included? |
| 4. | Was the recruitment strategy appropriate to the aims of the research? | 4. | Did the review’s authors do enough to assess the quality of the included studies? |
| 5. | Was the data collected in a way that addressed the research issue? | 5. | If the results of the review have been combined, was it reasonable to do so? |
| 6. | Has the relationship between researcher and participants been adequately considered? | ||
| 7. | Have ethical issues been taken into consideration? | ||
| 8. | Was the data analysis sufficiently rigorous? | ||
| 9. | Is there a clear statement of findings? | ||
| Quantitative Research Study | |||
| 1. | Did the study address a clearly focused issue? | ||
| 2. | Did the authors use an appropriate method to answer their question? | ||
| 3. | Were the cases recruited in an acceptable way? | ||
| 4. | Were the controls selected in an acceptable way? | ||
| 5. | Was the exposure accurately measured to minimise bias? | ||
| 6. | Was the outcome accurately measured to minimise bias? | ||
| 7. | Have the authors taken account of the potential confounding factors in the design or in their analysis? | ||
| 8. | Was the follow up of subjects complete enough? Was the follow up on subjects long enough? | ||
| 9. | Have ethical issues been taken into consideration? | ||
| 10. | Do you believe the results? | ||
Table 3
Quality appraisal results for assessed systematic reviews.
| Systematic Review | Q1 | Q2 | Q3 | Q4 | Q5 | Included |
|---|---|---|---|---|---|---|
| Anastasiadou, Medina-Pradas [23] | Y | Y | Y | N | N | N |
| Fegran, Hall [24] | Y | Y | Y | Y | Y | Y |
| Hussen, Chahroudi [25] | N | Y | ? | N | Y | N |
[i] “Y” = Yes, “N” = No, “?” = question was unable to be answered clearly in this case.
Table 4
Quality appraisal results for assessed quantitative papers.
| Quantitative Report | Q1 | Q2 | Q3 | Q4 | Q5 | Q6 | Q7 | Q8 | Q9 | Q10 | Included |
|---|---|---|---|---|---|---|---|---|---|---|---|
| Mauerhofer, Bertchold [26] | Y | Y | Y | Y | N | N | N | Y | Y | Y | N |
| Sonneveld, Strating [27] | Y | Y | Y | N | Y | Y | N | N | Y | Y | N |
[i] “Y” = Yes, “N” = No, “?” = question was unable to be answered clearly in this case.
Table 5
Quality appraisal results for assessed qualitative papers.
| Qualitative Report | Q1 | Q2 | Q3 | Q4 | Q5 | Q6 | Q7 | Q8 | Q9 | Included |
|---|---|---|---|---|---|---|---|---|---|---|
| Brumfield and Lansbury [28] | Y | Y | Y | Y | Y | N | Y | Y | Y | N |
| Cochrane, Sharpe [29] | Y | Y | Y | ? | ? | N | ? | ? | Y | N |
| Darrah, Magil-Evans [30] | Y | Y | Y | Y | Y | Y | Y | Y | Y | Y |
| Davis-Brown, Carter [31] | Y | Y | N | N | N | N | N | N | N | N |
| Delman, Clark [32] | Y | Y | Y | Y | Y | Y | Y | Y | Y | Y |
| Dogba, Rauch [33] | Y | Y | Y | Y | Y | Y | Y | ? | N | N |
| Doig, Fleming [34] | Y | Y | Y | Y | Y | Y | Y | Y | Y | Y |
| Dovey-Pearce, Hurrell [35] | Y | Y | Y | Y | Y | Y | Y | Y | Y | Y |
| Dunsmore and Quine [36] | Y | Y | Y | Y | Y | Y | N | Y | N | N |
| Dupuis, Duhamel [37] | Y | Y | Y | Y | Y | N | Y | Y | Y | N |
| Fair, Sullivan [38] | Y | Y | Y | Y | Y | N | Y | ? | Y | N |
| Garvie, Lawford [39] | Y | Y | Y | Y | Y | Y | Y | Y | Y | Y |
| Gerten and Hensley [40] | N | Y | N | N | N | Y | Y | Y | Y | N |
| Gillard and Roark [41] | Y | Y | Y | Y | N | Y | Y | N | N | N |
| Gilmer, Ojeda [42] | Y | Y | Y | Y | Y | Y | Y | Y | Y | Y |
| Grealish, Tai [43] | Y | Y | Y | Y | Y | Y | Y | Y | Y | Y |
| Harper, Dickson [44] | Y | Y | Y | Y | Y | Y | Y | Y | Y | Y |
| Hauser and Dorn [45] | Y | Y | Y | Y | Y | ? | Y | N | Y | N |
| Honey, Boughtwood [46] | Y | Y | N | Y | N | ? | ? | Y | Y | N |
| Larivière-Bastien, Bell [47] | N | Y | N | N | Y | N | Y | Y | Y | N |
| Ledford [48] | Y | Y | Y | N | Y | N | Y | Y | Y | N |
| Lee, Munson [49] | Y | Y | Y | Y | Y | Y | Y | Y | Y | Y |
| Lester, Marshall [50] | Y | Y | Y | Y | Y | N | Y | Y | Y | N |
| Lewis and Noyes [51] | Y | Y | N | Y | N | Y | Y | Y | Y | N |
| Lucksted, Essock [52] | Y | Y | Y | Y | Y | Y | Y | Y | Y | Y |
| Miles, Edwards [53] | Y | Y | Y | Y | Y | N | Y | N | Y | N |
| Munson, Jaccard [54] | Y | Y | Y | Y | Y | Y | Y | Y | Y | Y |
| Nilson, Schachter [55] | Y | Y | Y | Y | Y | Y | Y | Y | Y | Y |
| Offord, Turner [21] | Y | Y | Y | Y | Y | Y | Y | Y | Y | Y |
| Olsen and Sutton [56] | N | Y | N | N | Y | N | Y | Y | Y | N |
| Parron [57] | Y | Y | ? | ? | ? | ? | ? | N | Y | N |
| Patterson and Lanier [58] | Y | Y | Y | Y | Y | Y | Y | Y | Y | Y |
| Price, Corbett [59] | Y | Y | Y | Y | Y | N | Y | Y | Y | N |
| Racine, Lariviere-Bastien [60] | Y | Y | Y | N | Y | N | N | Y | Y | N |
| Reiss, Gibson [61] | Y | Y | Y | Y | Y | Y | Y | Y | N | N |
| Rudgley [62] | Y | Y | Y | Y | Y | Y | Y | Y | Y | Y |
| Rydström, Ygge [63] | Y | Y | Y | Y | Y | Y | Y | Y | Y | Y |
| Saaltink, Mackinnon [64] | Y | Y | Y | Y | Y | Y | Y | Y | Y | Y |
| Sasse, Aroni [65] | Y | Y | Y | Y | Y | Y | Y | Y | Y | Y |
| Sawin, Rauen [66] | N | Y | N | N | Y | N | Y | Y | Y | N |
| Shaw, Southwood [67] | Y | Y | Y | Y | Y | Y | Y | Y | Y | Y |
| Sly, Morgan [22] | Y | Y | Y | Y | Y | Y | Y | Y | Y | Y |
| Stewart, Law [68] | Y | Y | Y | Y | Y | Y | Y | Y | Y | Y |
| Swift, Hall [69] | Y | Y | Y | Y | Y | Y | Y | Y | Y | Y |
| van Staa, Jedeloo [70] | Y | Y | Y | Y | Y | Y | Y | Y | N | N |
| Webster and Harrison [71] | Y | Y | Y | Y | Y | Y | Y | Y | Y | Y |
[i] “Y” = Yes, “N” = No, “?” = question was unable to be answered clearly in this case.
Table 6
General details of included papers.
| Paper | Year | Aetiology | Included Groups | Participants | Patient age mean [range] (sd) | Phenomenon of interest | Method of Data Collection | Method of Data Analysis | Primary Findings |
|---|---|---|---|---|---|---|---|---|---|
| Darrah, Magil-Evans [30] | 2002 | Cerebral Palsy | Emerging Adults, Parents | 38 families | [19–23] | Satisfaction with care | Questionnaire, Interview | Content Analysis | Caring and Supportive People Fighting and Fatigue Communication and Information Disability Awareness |
| Delman, Clark [32] | 2015 | Serious Mental Illness | Emerging Adults | 24 patients | 24 [19–30] | Facilitators and barriers to shared decision-making | Interview | Inductive Thematic Analysis | Facilitators:
|
Barriers:
| |||||||||
| Doig, Fleming [34] | 2009 | Traumatic Brain Injury | Emerging Adults, Parents | 12 patients and parents. Three therapists also interviewed. | 24.7 (6.9) | Experience of a goal-directed therapy programme | Interview | Framework method | Provision of Structure Goals and Motivation Goal ownership Impact of awareness on participation Challenges Family Involvement Satisfaction and Progress Cognitive Function Goal Evolution Priorities |
| Dovey-Pearce, Hurrell [35] | 2005 | Diabetes | Emerging Adults | Interviews: 19 patients Focus Groups: 8 patients | Interviews: 19.9 (3.12) Focus groups: 19.4 (2.67) | Suggestions for appropriate diabetes service | Interview; Focus Group | Framework Approach | Diagnosis Continuity of staff contact Influence of age on care Interactions with staff Access and Environment Suggestions for service development |
| Fegran, Hall [24] | 2014 | Various | Emerging Adults | 18 studies – metasynthesis | Adolescents’ and young adults’ transition experiences | Literature search | Qualitative Metasynthesis | Facing changes in significant relationships Moving from a familiar to an unknown ward culture Being prepared for transfer Achieving responsibility | |
| Garvie, Lawford [39] | 2009 | HIV-1 | Emerging Adults | 17 patients | 19.93 (1.29) [17.6–22.5] | Suggestions for appropriate Modified Directly Observed Therapy (MDOT) adherence intervention. | Focus Group | Content Analysis | Barriers to adherence MDOT Provider characteristics Location and safety of MDOT interactions Communication between MDOT provider and participant Logistics of MDOT interactions Duration of MDOT intervention Additional services to be provided during MDOT interaction Feasibility and acceptance of MDOT program Potential barriers to MDOT program |
| Gilmer, Ojeda [42] | 2012 | Mental Health Disorders | Emerging Adults, Parents | 75 patients,14 parents | [18–24] | Needs for Mental Health and other services | Focus Group | Inductive Thematic Analysis | Mental health and substance abuse services Services that foster a transition to independence |
| Grealish, Tai [43] | 2013 | Psychosis | Emerging Adults | 9 patients | 16.4 [14–18] | Empowerment from the perspective of young people with psychosis | Interview | Interpretative Phenomenological Analysis | Individual control and choice vs inflexibility Being listened to, respected, and validated Communication Response of services Coping and structure Quality of relationship and support |
| Harper, Dickson [44] | 2014 | Mental Health Disorders | Emerging Adults | 10 patients | [16–18] | Experiences of 16–18 year old Mental Health Service users | Interview | Interpretative Phenomenological Analysis | Developmentally attuned services Power differentials Parental involvement Developing self-expression Continuity and loss of relationships |
| Lee, Munson [49] | 2006 | Mental Health Disorders | Emerging Adults | 389 patients | 17 [17–17] | Attitudes towards mental health services among young adults in foster care | Interview | Thematic Analysis | Positive experiences are associated with beneficial care and relationships with a mental health professional; negative experiences were associated with concerns about treatment, poor relationships with a mental health professional, and unprofessional practice. |
| Lucksted, Essock [52] | 2015 | Psychosis | Emerging Adults | 32 patients | 23 [<20–34] | Views of engagement in an early intervention program for psychosis | Interview | Thematic Analysis | Individualised care
|
Program attributes
| |||||||||
Family member influences
| |||||||||
| Munson, Jaccard [54] | 2012 | Mood Disorders | Emerging Adults | 60 patients | 20.97 (2.08) | Experiences of mental health service use during the transition to adulthood | Interview | Grounded Theoretic Analysis | Dynamic nature of service utilisation over time Core factors that impact service use at any given time |
| Nilson, Schachter [55] | 2012 | Haemophilia | Emerging Adults | 18 patients | 25.2 [17–31] | Health care-related knowledge, attitudes, and behaviours of young men with haemophilia | Interview (face to face and by telephone) | Constant Comparative Method | Reluctance to acknowledge having mild haemophilia Experiential learning trumps advice from the haemophilia team Negative reception to the health care team’s approaches Strategies for managing potential bleeds: watch and wait |
| Offord, Turner [21] | 2006 | Anorexia Nervosa | Emerging adults | 7 patients | [16–23] | Experiences of treatment and discharge of young adults in inpatient treatment for anorexia nervosa | Interview | Interpretative Phenomenological Analysis | Removal from Normality vs. connecting with the outside world
|
Treated as another anorexic vs. a unique individual in distress
| |||||||||
Control and collaboration
| |||||||||
The importance of peer relationships
| |||||||||
| Patterson and Lanier [58] | 1999 | Special Health Care Needs (Chronic illnesses or physical disabilities) | Emerging Adults | 7 patients | 24.3 (6.47) [17–33] | Experiences of, and facilitators and barriers to transition from paediatric care to adult care. | Focus Group | Grounded Theoretic Analysis | |
| Rudgley [62] | 2013 | Attention Deficit Hyperactivity Disorder | Emerging Adults | 4 patients | [18–19] | Experiences of transition from paediatric to adult care of young adults with ADHD | Interview | Interpretative Phenomenological Analysis | Personal experience of ADHD diagnosis and treatment Impact of ADHD on self and relationships Living with ADHD Moving on |
| Rydström, Ygge [63] | 2013 | HIV | Emerging Adults | 10 patients | 18 [15–21] | Experiences of young people growing up with innate or early acquired HIV infection | Interview | Content Analysis | To protect oneself from the risk of being stigmatised To be in control Losses in life, but HIV is not a big deal Health care/health care providers Belief in the future |
| Saaltink, Mackinnon [64] | 2012 | Intellectual Disabilities | Emerging Adults, Parents, Siblings | 4 patients,4 mothers,2 siblings | [14–18] | The negotiation of the right to participate in shared decision making in a family context | Interview | Interpretative Phenomenological Analysis | Autonomous participation Participation and protection: guidance and parents’ choice Decision-making processes as normal and natural Enabled choices |
| Sasse, Aroni [65] | 2013 | Various chronic issues, particularly eating disorders | Parents | 17 parents | 16 (1.4) [13–18] | Parental perspectives on confidential consultations between their adolescent children and health care providers | Interview | Content and Thematic Analysis | Variation in parental views about confidential consultations for adolescents The role of a parent:
|
| The influence of trust | |||||||||
| Shaw, Southwood [67] | 2004 | Juvenile Idiopathic Arthritis | Emerging Adults, Parents | 12 adolescents, 14 parents of adolescents, 18 young adults, 9 parents of young adults. | Adolescents: 16 [13–18] Young adults: 23 [19–30] | Experiences of transitional care for adolescents with juvenile idiopathic arthritis | Focus Groups | Interpretative Phenomenological Analysis | Transitional care:
|
| Transfer from paediatric to adult services Preparation for transfer | |||||||||
| Sly, Morgan [22] | 2014 | Anorexia Nervosa | Emerging Adults | 8 patients | 25 [18–34] | Experiences of therapeutic alliance during in-patient treatment for anorexia nervosa | Interview | Interpretative Phenomenological Analysis | Alliance as a key experience Active, not passive Taboo talking First impressions count |
| Stewart, Law [68] | 2001 | Physical disabilities | Emerging Adults, Parents | 21 patients, 12 parents. One service provider also interviewed | 23.2 [19–30] | Experiences of transition for young people with physical disabilities | Interview | Editing style of Thematic Analysis | The Context: “Trying to Fit" The Transition Process: “Changes and Cliffs” Needs and Services: “Building a Bridge” |
| Swift, Hall [69] | 2013 | Attention Deficit Hyperactivity Disorder | Emerging Adults | 10 patients | [17–18.5] | Experieces of transition to adult mental health services | Interview | Thematic Analysis | Clinician qualities and relationship Responsibility of care Nature and severity of problems Expectations of AMHS |
| Webster and Harrison [71] | 2008 | Mental Health Disorders | Emerging Adults | 20 patients | [18–25] | Experiences of the onset of mental health problems, and initial interactions with the health system | Interview | Grounded Theoretic Analysis | First sign Recognition Understanding Resolution Maze to care model |
Figure 2
Characteristics and subthemes identified as being part of PFCC.