Background
Methods
Getting started – phase 1
Deciding what is relevant – phase 2
Starlite category | Description |
---|---|
Sampling Strategy | Comprehensive |
Type of studies | Qualitative research, fully reported |
Approaches | Electronic database with citation snowballing |
Range of years | No limit |
Limits | None |
Inclusion and exclusions | All qualitative studies that explore the experience of adolescent onset idiopathic scoliosis or their parent/carer Exclusions: studies where authentic voice cannot be deciphered from other stakeholder (e.g. health professional or teacher): studies that do not report qualitative findings |
Terms used | 1 Qualitative Research/ 2 Anthropology/ 3 Focus Groups/ 4 Grounded Theory/ 5 Interview/ 6 1 or 2 or 3 or 4 or 5 7 ethnog*.ti,ab 8 phenomenolog*.ti,ab 9 (qualitative adj5 (theor* or stud* or research or analys*)).ti,ab 10 (hermeneutic* or heidegger* or husserl* or colaizzi* or giorgi* or glaser or strauss or (van and kaam*) or (van and manen) or ricoeur or spiegelberg* or merleau).ti,ab 11 (constant adj3 compar*).ti,ab 12 (grounded adj3 (theor* or stud* or research or analys*)).ti,ab 13 (narrative adj3 analys*).ti,ab 14 (discourse adj3 analys*).ti,ab 15 (conversation adj3 analys*).ti,ab 16 ((lived or life) adj3 experience*).ti,ab 17 ((theoretical or purpose) adj3 sampl*).ti,ab 18 ((field adj note*) or (field adj record*) or fieldnote*).ti,ab 19 (participant* adj3 observ*).ti,ab 20 (action adj research).ti,ab 21 ((digital adj record) or audiorecord*).ti,ab 22 (((co and operative and inquir*) or co-operative) and inquir*).ti,ab 23 ((semi-structured or semistructured or unstructured or structured) adj3 interview*).ti,ab 24 feminis*.ti,ab 25 (humanistic or existential or experiential).ti,ab 26 (social and construct*).ti,ab 27 (poststructural* or post structural* or post-structural*).ti,ab 28 (postmodern* or post modern* or post-modern*).ti,ab 29 'appreciative inquiry'.ti,ab 30 'interpretative phenomenological analysis'.ti,ab 31 (face adj3 interview*).ti,ab 32 ((depth or in-depth) adj3 interview*).ti,ab 33 (abductive adj analys*).ti,ab 34 7 or 8 or 9 or 10 or 11 or 12 or 13 or 14 or 15 or 16 or 17 or 18 or 19 or 20 or 21 or 22 or 23 or 24 or 25 or 26 or 27 or 28 or 29 or 30 or 31 or 32 or 33 35 exp SCOLIOSIS/ 36 scoliosis.ti,ab 37 35 or 36 38 6 and 37 39 34 and 37 |
Electronic sources | Medline, Embase, PsycINFO, CINAHL |
Reading included studies and determining how they are related – phases 3 & 4
Translating studies into one another and synthesising translations – phases 5 & 6
Expressing the synthesis – phase 7
Results
Author & year | Aim | Country | Condition | Setting | Number | Female (%, n) | Age (y), range | Data collection | Analysis |
---|---|---|---|---|---|---|---|---|---|
Donnelly et al. (2004) [24] | To explore three aspects of treatment for AIS from the perspective of the patient and family | USA | AIS (brace or surgery) | Tertiary referral center | 12 with AIS 10 parents | 100% | 13–18 | Focus groups with patients and group interviews with parents | Content analysis |
Honeyman et al. (2016) [30] | To provide a balanced, patient-focused, up-to-date, UK-based account of the patient experience of scoliosis surgery | UK | AIS (single stage posterior correction and instrumented fusion surgery) | Surgical hospital | 6 with AIS | 100% | 15–17 | Semi-structured interviews | Thematic analysis, interpretive phenomenology |
Law et al. (2016) [29] | To determine the impact of visual aesthetics on user acceptance and compliance towards the brace | Hong Kong | AIS (20°-30° Cobb with brace) | School screening program and certified prosthetist-orthotist | 10 with AIS | 100% | 12–22 | Semi-structured interviews | Grounded theory |
MacCulloch et al. (2009) [28] | To identify health-specific needs for online information and support for patients with adolescent idiopathic scoliosis who have had or anticipate having spinal surgery | Canada | AIS (post-surgical or anticipating surgery) | Children’s hospital orthopaedic clinic | 11 with AIS | 82% (n = 9) | 10–18 | Focus groups and one-to-one telephone interviews (n = 3); semi-structured interview guide | Content analysis |
Motyer et al. (2022) [27] | To explore the psychosocial experiences of adolescents with idiopathic scoliosis during the presurgical stage of treatment | Ireland | AIS (pre-surgical) | Orthopaedic department of children’s hospital; tertiary referral center | 14 with AIS | 71% (n = 10) | 12–17 | Semi-structured interviews | Inductive reflexive thematic analysis |
Rullander et al. (2013) [26] | To describe adolescents’ narrated experiences of going through scoliosis surgery | Sweden | AIS (post-surgical, ~ 2 years) | Hospital | 6 with AIS | 67% (n = 4) | 15–18 | Semi-structured interviews | Content analysis |
Rullander et al. (2017) [25] | To broaden the scope of adolescents’ experiences of undergoing scoliosis surgery | Sweden | AIS (post-surgical) | Spine centres | 37 with AIS | 86% (n = 32) | 12–18 | Diary for first 2 weeks of recovery (n = 18), semi-structured interview 6 months post-surgery | Content analysis |
Sapountzi-Krepia et al. (2006) [19] | To investigate which feelings are created by the bracing experience in children/adolescents with scoliosis and what their opinions of the support provided to them by health-care professionals and by their families | Greece | AIS (brace treatment > 6 months, > 12 h/day) | Outpatient scoliosis clinic in hospital (× 2) | 12 with AIS | 71% (n = 9) | 10–16 | Semi-structured interviews | Content analysis |
To explore the feasibility of the trial, including trial recruitment and acceptability of the intervention, participants’ perception of the trial intervention, any issues influencing exercise adherence, and the appropriateness of the chosen trial outcomes | UK | AIS (mild to moderate, participating in physiotherapy exercise programme) | Physiotherapy department of orthopaedic hospital (× 4) | 6 with AIS 6 parents; 4 physio-therapists (data not included) | 100% | 10–16 | Semi-structured interviews | Interpretive phenomenological analysis, constant comparative methods |
Quality assessment and confidence in findings
Authors & year | CASP 1 | CASP 2 | CASP 3 | CASP 4 | CASP 5 | CASP 6 | CASP 7 | CASP 8 | CASP 9 | CASP 10 | IN/OUT |
---|---|---|---|---|---|---|---|---|---|---|---|
Donnelly et al. (2004) [24] | Y | Y | Y | Y | Y | Y | Y | Y | Y | Y | IN |
Honeyman & Davison (2016) [30] | Y | Y | Y | Y | Y | Y | Y | Y | Y | Y | IN |
Law et al. (2016) [29] | Y | Y | Y | Y | Y | Y | N | Y | Y | Y | IN |
Macculloch et al. (2009) [28] | Y | Y | Y | Y | Y | can't tell | Y | Y | Y | Y | IN |
Motyer et al. (2022) [27] | Y | Y | Y | Y | Y | can't tell | Y | Y | Y | Y | IN |
Rullander et al. (2013) [26] | Y | Y | Y | can't tell | Y | Y | Y | Y | Y | Y | IN |
Rullander et al. (2017) [25] | Y | Y | Y | Y | can't tell | Y | Y | Y | Y | Y | IN |
Sapountzi-Krepia et al. (2006) [19] | Y | Y | Y | Y | Y | can't tell | Y | Y | Y | Y | IN |
Toye et al. (2016) [31] | Y | Y | Y | Y | Y | can't tell | Y | Y | Y | Y | IN |
Williams et al. (2015) [32] | Y | Y | Y | Y | Y | can't tell | Y | Y | Y | Y | IN |
GRADE-CERQual assessment of confidencea | Theme derived from adolescent/ parent/ physio | Donnelly et al. (2004) [24] | Honeyman et al. (2016) [30] | Law et al. (2016) [29] | MacCulloch et al. (2009) [28] | Motyer et al. (2022) [27] | Rullander et al. (2013) [26] | Rullander et al. (2017) [25] | Sapountzi-Krepia et al. (2006) [19] | Toye et al. (2016) [31] | Williams et al. (2015) [32] | |
---|---|---|---|---|---|---|---|---|---|---|---|---|
Diagnosis turned time on its head | Moderate | Adolescent & parent | x | x | x | x | x | |||||
Usual activities no longer the same | Moderate | Adolescent & parent | x | x | x | x | x | x | ||||
Hiding my body | High | Adolescent & parent | x | x | x | x | x | x | x | x | ||
I want to feel normal again | High | Adolescent & parent | x | x | x | x | x | x | x | |||
Balancing isolation and support | Moderate | Adolescent | x | x | x | x | x | x | x | x | ||
Trying to keep control of treatment decisions | Moderate | Adolescent & parent | x | x | x | x | x | x | x | x | ||
Fearing surgery yet feeling hopeful | Moderate | Adolescent | x | x | x | x | x | x | x | x |
Synthesis findings
Diagnosis turned time on its head
It’s been quite a rollercoaster ride. I mean one minute I was just healthy, living a good life, and then we found this out, like someone turned the sand timer (female adolescent) [30].
That can’t be my spine, is that my spine? It must be somebody else’s spine. They just said straight away that I needed surgery, and… I didn’t take it well (female adolescent) [30].
My GP told me I would need surgery or a back brace, so I had prepared myself… and then I got told I didn’t need it as it wasn’t bad enough… he didn’t tell me what options I had to help it, he just said I didn’t need surgery I don’t need a back brace… that was it (female adolescent) [31].
How did I not notice sooner? How did I let it get this far? Is it something I did? I could kick myself for not doing something sooner. I am her parent and can do nothing to make it right (parent) [32].
Usual activities no longer the same
I had to stop training, and when I could take it up again it felt difficult. The team had grown so much better and I was left behind (adolescent) [26].
Just the fact that I play sport kinda helps me like and just gets my mind off [my scoliosis], I would just totally forget about it there (female adolescent) [27].
Hiding my body
I was worried about the brace being visible under my clothes and I didn’t want to go outside the house, not even to have fun (female adolescent) [19].
I was ashamed to go out… I was ashamed about wearing the brace at school… I was ashamed when my classmates were looking at me strangely (female adolescent) [19].
I could no longer wear the clothing that I liked and it was necessary that I had surgery for me to be happy with my body again (female adolescent) [27].
[Appearance changes] don’t really bother me too much, like I wouldn’t be 100% happy with how I look, but I think that’s even what most girls are like really (female adolescent) [27].
I want to feel normal again
I ask myself why I was born like this. When I put on the brace again, the physical discomfort further intensifies that feeling (female adolescent) [29].
They treat you like, are you sure you can do this: Do you need help carrying that. And it is just kind of annoying (female adolescent) [24].
I didn’t feel that I was inferior to other people when I wore the brace to school. There are some girls who are similar to me, I feel like we are the same (female adolescent) [29].
Balancing isolation and support
Regardless of the support provided, when I was alone I was thinking about it, it concerned me… (adolescent) [19].
I lost contact with [my friends] during the hospital visit, and I still haven’t got them back. I miss them! (adolescent) [26].
If I didn’t have the friends who came to visit me, I would have been screwed. I wouldn’t have recovered as fast as I did. I know it sounds cheesy, but support helps you recover faster (female adolescent) [28].
I couldn’t let her leave me. I need her, like, so much, it was ridiculous… I just knew I needed me mam, I needed her (female adolescent) [30].
Trying to keep control of treatment decisions
I had no choice, I had to wear that hard brace, but it would have made me happier if I was allowed to decide on what could be included (graphics) on the brace, something that I liked. It would have made me feel respected (female adolescent) [29].
…they just said you have to have surgery. We did not really have a choice but it was fine with me (female adolescent) [24].
…the brace was really, you know, a necessity and so we went ahead and proceeded from that point… we followed doctor’s recommendation on what to do… we more or less trusted the doctor to do the right thing… (parent) [24].
[The doctor] was very cursory… as a child you want someone interested in you rather than only being worried about the angles, saying ‘don’t worry about it everything is fine, off you go’ (parent) [31].
Fearing surgery yet feeling hopeful
I was scared of being paralyzed and not being able to walk again, to sort of have to be bound to a wheelchair (adolescent) [26].
It seems such a little thing to have to do but it was so much effort like to get on a toilet and then walk across the room... it was a lot of pain and work and energy (female adolescent) [30].
Once I get the surgery done I feel like I’ll be able to get back to normal (female adolescent) [27].