Table 2.
Details on the qualitative methods and quality of retrieved papers
Paper | Details on qualitative methods | Other methods used for item generation | Details on analysis | Details on sampling | Parent/guardian input? | Quality summary in relation to COREQ checklist |
---|---|---|---|---|---|---|
Angeles-Han et al. [65] | Interviews with children with and without vision problems | Interviews with experts and selection of relevant items from existing instruments | No detail on qualitative analysis | No information on sampling | No | Very low detail on qualitative methods. No information provided on sampling, data collection or analysis. Some information on researcher credentials available on title page. No data from interviews presented |
Basra et al. [66] | Semi-structured face-to-face interviews with teenage patients aged 12–18 years. Patients were asked to describe ways their lives have been affected by their skin disease | Initial conceptual framework (topic guide) developed from existing literature | Thematic analysis, following grounded theory methodology | Convenience sampling through secondary-referral practice | No | Minimal information on sampling, data collection and analysis. Paper states that saturation reached in relation to themes emerging from interviews. No data from interviews presented |
Beusterien et al. [32] | Interviews with children/adolescents with Hunter syndrome and their parents. Interviews were focused on its impact on everyday life | Literature reviews and use of items commonly used in other generic economic measures | States qualitative data analysis used. No further information on analysis approach | No information was given on how children or carers were sampled for the development aspect of the work | Yes, with parents and carers | No information on sampling, data collection or analysis. No presentation of data from interviews. No details given on the credentials of the research team |
Bray et al. [20] | Data were collected through face-to-face, qualitative semi-structured interviews in participants’ homes, guided by a piloted interview schedule | The interview schedule was developed from the findings of a previous systematic review, discussion within the research team, and with consideration of the items in existing measures | Framework analysis using an a priori coding framework was used to line-by-line code the transcripts. Codes were grouped into categories of related codes, which were subsequently refined into higher order analytical themes giving a broader understanding of the coded transcripts and the relationship between categories of codes. Child and parent responses were analysed separately | Sampled wheelchair users were stratified by age (0–5, 6–15, 16–18) and by interview set up (child alone, parent alone, parent and child). Potential participants were sent postal information about the study and indicated consent to participate by filling in demographics questionnaire | Yes | Extensive information available on sampling data collection and analysis, although approach to sampling not explicitly outlined. Author provided information on the research team but no reflexivity. Interview schedule and coding framework available. Mentions ethical approval for qualitative study. Authors acknowledge limitations of work i.e. no checking of findings by participants or double coding of data. Uses quotations to support findings |
Bruce et al. [42] | Focus groups with children and their families. Questions during focus groups focused on what participants considered important to their health-related quality of life | A literature review of previously generated inventories was used to identify items and dimensions that might be relevant to guide discussions in the focus groups | No formal qualitative analysis discussed | Children approached for participation during routine clinic appointments | Yes | Very little information on data collection and sampling. No information on qualitative analysis or research team or reflexivity. Authors reported reaching saturation in terms of the themes generated from the focus groups |
Das et al. [67] | Qualitative study with in-depth interviews and focus groups to inform tool development. Principal caregivers were requested to participate in in-depth interviews, whilst children living with HIV took part in focus group discussions with other children in their age group | A literature review was undertaken, and experts consulted regarding selection of items for the scales | No information on how qualitative data were analysed | Participants recruited with the help of an HIV community-based organisation and through a convenience sample of children with HIV and their caregivers residing in the districts of West Bengal | Yes, with caregivers | Very little information on methods and sampling. No details on research team or qualitative data analysis. No information on how themes were derived from the qualitative data to inform the items of the measure. No presentation of data to support findings |
Davis et al. [50] | Interviews were conducted with young people and their primary caregivers. The research used a grounded theory approach, with the interviews aimed at being as open and receptive as possible to allow theory to be developed from the data | No other methods used | The researchers read all responses to identify themes related to quality of life and a list of inductively derived responses was developed. The researchers discussed the interpretation of the data until consensus was achieved. Both researchers re-read the transcripts and coded the patterns by deductively applying the coding framework to each transcript | Families were purposively selected from a hospital register. Families were selected to ensure representation of age, sex and functional severity | Yes | Detailed information available on sampling, data collection and the research team. The authors provided reflection on the impact of their role/characteristics on research findings. Saturation was met and ethical approval for the qualitative research discussed. Information on analysis process not as detailed as other areas, particularly the approach to, and process of, analysis. Use of participant quotes to support findings |
Flokstra-de Blok et al. [68] | Adolescents were interviewed on the effect of food allergy on their daily lives | Literature reviews and expert opinion | No information provided on analysis | Participants were recruited from an outpatient paediatric allergy clinic. Two adolescents were approached during a trial, and eight adolescents were approached by telephone | No | Very little information available on data collection, sampling. No information provided on data analysis or the research team. No quotations or themes presented from qualitative data. The paper states that a full description of the methodology is available in unpublished data |
Fiume et al. [44] | Interviews explored parent and child perspectives on the impact of child’s stroke on quality of life | Literature review and informal consultation with experts | Qualitative content analysis of interview responses. Based on the analysis, a series of charts were created compiling emergent themes and frequency, and items and domains of concern | No information on sampling | Yes. Adolescent interviews undertaken separately from parents | Very limited information on data collection and analysis. No information on sampling and the research team. No data presented from the interviews to support findings |
Follansbee-Junger et al. [43] | Focus groups. Semi-structured, open-ended questions were asked of participants to identify and develop the content of the items. Short interviews undertaken with younger children | Literature review undertaken to generate content and develop the conceptual framework for the focus groups. Expert input | Thematic analysis. Focus group transcripts coded by two separate reviewers. Thematic content examined by three researchers and final decisions on main themes made by consensus | Families recruited during routine medical visits. Sample included spectrum of ages, developmental abilities, sex and type of epilepsy | Yes | Detail included on research team, data collection and analysis. Saturation of interview themes and double coding of data reported. Analysis process not described in detail and no quotes from focus groups data. Findings from interviews with young children not discussed |
Franciosi et al. [38] | Focus interviews. All interviewers were trained by an experienced qualitative researcher and provided with a semi-structured interview guide of open-ended questions | A priori domains were developed based on the existing literature and the experience of the research team to inform the measure and questions for the interviews | Responses were grouped according to open-ended questions, domains of interest, and age ranges. Common domain themes were elicited when two or more participants described them, and content themes were then derived by consensus among the research team. Disagreements were resolved by further discussion | Participants were identified from local and referral populations at a hospital medical centre. Children and young people were sampled from different age groups: 5–7, 8–12 and 13–18 years of age | Yes. Children aged 8–18 years interviewed separately from their parent | Good amount of information on researchers’ backgrounds/credentials. Information available on data collection, sampling and analysis. Saturation of themes reported. However, no data reported from the qualitative interviews and no formal qualitative analysis approach stated. Mentions ethical approval for the qualitative study and interview topic guide available |
Geister et al. [69] | Paired concept elicitation, semi-structured interviews used, following a topic guide. Initial open-ended questions were used, followed by probing questions on specific symptoms and situations | Current peer-reviewed literature was searched for important concepts to inform the modules of the measure | Content analysis. Interviews were coded using Atlas.ti software. Inter-rater agreement between coders was assessed on approximately 10% of the transcript database. Saturation of concept was determined to have been reached when there were no longer new concepts being coded | Participants and parents/carers identified through patient records and recruited through four diverse clinical sites in the USA. Maximum variation sampling used to recruit children of different ages and severity of conditions | Yes. Paired interviews were conducted with the child and parent or guardian | Description available of sampling, data collection and analysis process. No information on background of research team or reflexivity. Double coding of interview transcripts and saturation of interview themes reported. No presentation of qualitative data to support themes |
Gilchrist et al. 2018 and sister paper: Gilchrist et al. 2015 [28, 29] | Focus groups and interviews with children. The focus groups were facilitated by two dentally qualified researchers and took place in a non-clinical room | The interviews were conducted by one researcher and were recorded. The venue and time of the interview were selected by the participant and their family | Framework analysis was used to classify the data according to themes and categories that emerged. Transcripts were analysed independently by two researchers. Recurring themes were identified and then further developed. The themes were then grouped into main and subthemes. Thematic charts were created | Children were purposively sampled from both a primary care dental setting and a dental care service to take part in qualitative focus groups and interviews. Sampling continued until data saturation was reached | No | Most detail on qualitative methods came from sister paper (Gilchrist et al., 2015). Good information from both papers combined on sampling, data collection and analysis. Sister paper covers research team credentials and reflexivity. Double coding of data and saturation mentioned |
Graham et al. [36] | Free-ranging, semi-structured interviews were held with parents and some children with chronic physical disorders. Interviews encouraged detail on daily activities to identify how illness had affected these | Existing and relevant quality-of-life measures with both children and adults were reviewed | Qualitative analysis not discussed, only that findings were grouped into themes by members of research team | Sampling for measure item development not discussed | Yes | Very little information on method. No discussion of sampling or analysis for item development. No qualitative data presented to support findings (questionnaire domains). Mentions ethical approval for the qualitative study |
Hareendran et al. [24] | Concept elicitation interviews were conducted with adolescents diagnosed with ADHD and their primary caregivers. A conceptual framework was used to inform the structure and content of the concept elicitation interview guide. Interviews started with an open-ended discussion about the impact of ADHD, followed by questions on specific issues | Literature review and expert interviews to inform conceptual framework for interviews | A content analysis approach was used to analyse data from the interviewers’ field notes, and from the transcripts of audio-recorded interviews. A coding dictionary was developed based on the themes and concepts that emerged during the discussions. Analysis was conducted by two of the authors | Participants were recruited from seven clinical sites from different regions in the USA. A purposive sampling method was used to recruit the sample | Yes, primary caregivers | Good level of information available on sampling, data collection and analysis. No information on research team or reflexivity. Saturation and double coding of interview data reported. Themes supported with quotations from qualitative data, but no topic guide supplied. Ethical approval mentioned |
Hartmaier et al. [70] | Unstructured in-depth interviews with 10 adolescent migraineurs | Literature reviews and interviews with experts | No discussion of how interview findings were analysed | Ten adolescent subjects with migraine who were considered articulate about their migraine experiences were recruited | No | Minimal detail on qualitative method used. No discussions of sampling or data analysis. No background provided on the research team. Ethical approval and informed consent for study participation discussed |
Hilliard et al. [51] | Individual qualitative interviews using semi-structured interview scripts. The researchers asked open-ended questions and used prompts and probes to elicit additional comments or clarify responses. Interviewers also invited participants to discuss any other topics related to type 1 diabetes that they felt were important | Review of existing relevant instruments and literature to allow study team to generate a preliminary list of health-related quality-of-life topics for potential inclusion as items in the measures | No formal qualitative analysis discussed. The interviewers audio-recorded the interviews and recordings were transcribed. The study team then designed the items to reflect the themes from the qualitative interviews and previous literature. Expert collaborators reviewed the draft measures and provided feedback | Study staff reviewed patient schedules to identify eligible youth with upcoming medical appointments and sent study information letters via email, followed by a telephone call to introduce the study and schedule a visit | Yes. Youth interviews conducted separately from parents | Good information available on data collection, sampling and examples of interview questions. Mention of ethical approval for item development and consent/assent from participants (including youth) for the qualitative study. However, no mention of any formal qualitative data analysis and no quotations to support themes from the data. Some reference to researcher background characteristics |
Hoffman et al. [52] | Qualitative interviews with children with cochlear implants and their parents. Discussion guides included an outline of open-ended questions and a series of follow-up probes to elicit additional information | A literature review and focus groups with stakeholders were used to create conceptual framework that was followed during interviews with children | Content analysis. To identify common themes and generate initial codebooks for the coding tree, transcripts were randomly selected. The authors grouped phrases from the transcripts by theme to create codebooks and these were then used to code all transcripts. Transcripts were coded in pairs to achieve consensus coding | To ensure demographic and geographical diversity, children were recruited from national, paediatric cochlear implant centres. Flyers about the study were distributed to all families of paediatric patients in the desired age range | Yes | Some information available on data collection and sampling. Detailed description of analysis process and presentation of some quotations from interviews. Diagram of conceptual coding framework given. Ethical approval for the study and saturation of content from interviews mentioned. No information on research team or reflexivity |
Khadra et al. [41] | Interviews were conducted with individual adolescents in a private office at the clinic or in the patient’s room. The interviews were semi-structured, based on a list of open-ended questions | The conceptual model used to guide the content of the semi-structured interviews was based on the components of an existing quality-of-life model for cancer survivors | The Corbin and Strauss method of constant comparison, including immersion, coding, categorisation and grouping was used to analyse the content of the interviews. Authors examined the data and contextual references and searched for differing meanings of words. Line-by-line analysis was performed to assign appropriate codes to units of data | Convenience sampling method used for recruitment through an outpatient clinic in a paediatric hospital | No | Information available on sampling, data collection and analysis. Some information given on research team and their role in research. No discussion of saturation or presentation of quotations from interview findings. Ethics and informed consent for study participation mentioned |
Markham et al. [22] | Focus groups with children and young people including the use of enabling techniques, which provided participants with additional and alternative methods of exploring and responding to research questions, including the use of a picture-card game designed to encourage children to relate their own experiences during discussions | No other methods used | Analysis used grounded theory and framework analysis. Transcripts were searched for units of meaning relating to the research question. These units were indexed with descriptive labels in a process of open coding using constant comparison analysis. As analysis progressed and new codes were added to the index, these were also iteratively applied to transcripts previously analysed | All participants included in the study were aged between 6 and 18 years; attending full-time education within a mainstream education setting, including language units, or a special school for children and young people | No | Detail on qualitative method and enabling techniques and analysis. Limited information on sampling. Discusses reflexivity and how background of the researcher may have influenced findings. Mentioned reaching saturation of focus group themes. Ethics and informed consent discussed |
Marino et al. [48] | Data collection used the nominal group technique, where members respond to a set of scripted questions, after which a single idea is put forward by each participant until all ideas generated from the scripted questions are discussed. The scripted questions focused on issues important to children’s/adolescents’ quality of life with heart disease | No other methods used | Ideas from the nominal groups were entered into a cumulative list of potential items. Items on the cumulative master lists were then separated into a priori hypothesised dimensions. The research team met to review content, and through note summarisation and constant comparison deleted redundancies within cumulative lists | Potential nominal group members were identified through the Cardiac Center database at a children’s hospital. Eligible patients were sorted alphabetically, and every third patient/parent was contacted. Eligible patients were invited by telephone to participate | Yes | Processes of sampling, data collection and analysis discussed. Ethical approval and informed consent for participants mentioned. Some details on research team given. Some examples of questions asked to groups given in text. No quotations from nominal group data to support findings |
McMillan et al. [40] | Semi-structured interviews using open-ended questions were conducted with teenagers with diabetes, and focus group discussions took place with teenagers in small groups of 2–4 teenagers each | No other methods used | No information on qualitative analysis | Participants were sampled from four hospitals in Greater London | No | Lack of detailed information on sampling and data collection. No information at all on qualitative analysis. Limited information on sample of teenagers participating in research. No quotations from interviews/focus groups to support research findings. No information on research team. Ethical approval for study mentioned |
Morris et al. [47] | Focus groups. Each group was led by a facilitator experienced in conducting focus groups with children. In the first session, participants were invited to agree or disagree with the pre-set statements regarding their quality of life with a foot or ankle problem. The second activity involved life-mapping, in which the groups were asked to consider issues arising during a day in the life of a child with a foot or ankle problem | No other methods used | The audio recordings were transcribed, and the accuracy checked. Grounded theory and content analysis were used to group each of the issues that participants had raised. Each part of the transcripts was coded by comparing the text with pre-set constructs and the comments provided by others. The verbatim statements were subsequently aggregated into categories and labelled accordingly | Children using health services for foot and ankle problems were identified by healthcare professionals at an NHS orthopaedic hospital. The families of those children who were between 5 and 15 years old and had attended the hospital in the preceding 2 months were mailed invitations to take part in a focus group | Yes, involved in separate focus groups | High level of detail available on data collection. Some information on sampling and analysis. Extensive quotations from focus groups reported to support findings. Ethics approval for the research mentioned. Limited information on research team |
Oluboyede et al. [21] | One-to-one interviews conducted to gather information on how being overweight impacts aspects of life. Focus groups with treatment seeking and non-treatment seeking adolescents for wider views on issues of importance | Review of existing weight-specific instruments to guide topics of questioning during interviews | Framework analysis. Themes were identified from listening to interviewed recordings and reading through transcripts using an iterative process. A matrix summarised and synthesised data generated from the interviews | Adolescents recruited from three UK-based weight management centres and one school. Sampled purposively according to gender and age | No | Information on sampling, data collection and analysis. Topic guide for interviews provided. Analysis validated by a second reviewer. No qualitative data (quotes) presented to support findings. Very little information given on research team |
Patel et al. [55] | Interviews. Open questions to avoid leading participants’ answers. Topic guide developed and used in a flexible manner and adapted as data collection progressed. Interviews were split between a non-clinical environment and participants’ homes | Prior to carrying out the interviews, a topic guide was developed with reference to existing literature | Framework analysis. Transcripts from interviews were read and notes were made independently by the two interviewers on the general themes emerging. An initial thematic framework was developed and discussed within the study team. Sections of transcripts were labelled by the interviewers to indicate which themes data related to. Thematic charts were created for the main themes | Potential participants were identified by the clinician treating them in the orthodontic departments at two National Health Service (NHS) hospital Trusts. Purposive sampling was used to ensure representation of key characteristics: age, gender, ethnicity and malocclusion type | No | Detail available on sampling, data collection and analysis. Some details given on research team i.e. researcher backgrounds and qualifications. Presentation of quotations from data to support themes and item development. No presentation of topic guide or coding framework |
Panepinto et al. [46] | In-depth interviews conducted with paediatric patients with sickle cell disease. Open and semi-structured questioning was used to elicit themes around issues identified as important from the literature review and experts | A literature review was undertaken to identify important issues for the interviews. Expert opinion was used to review the domains | A content analysis was performed. Attention was paid to the frequency, extensiveness, specificity and emotion of the themes. Themes were later grouped into appropriate disease and treatment-related areas to inform domains | Participants were recruited from a disease-specific clinic in the US. Purposive sampling ensured that different age groups and clinical phenotypes were represented | Yes. Separate parent and child interview undertaken. Children aged 5–7 years were interviewed with parent present | Saturation mentioned. Analysis performed by three researchers. Authors gave background information on the research team. Interview topic guide included in paper. No information on how participants were approached for participation. Presentation of some quotes from interviews |
Peterson et al. [31] | Focus groups with children and adolescents. At the beginning of groups, questions were asked about how they view their condition and how they cope with it | Literature review of other health-related quality-of-life measures to inform measure development | Statements from the focus groups were grouped into three sections to inform the measure: (a) generic (b) chronic generic and (c) condition specific | No information on sampling apart from that the focus groups were stratified by age and severity of disease | Yes | Very little information on sampling and no formal qualitative analysis reported. No presentation of themes from the focus groups. No information on the research team |
Raphael et al. [33] | Authors suggest that focus groups methods were used but this is not made clear. “Instrument development began with a series of six group meetings with high school students.” Adolescents were asked what the term “quality of life” meant to them | Adolescent development and adolescent health literature were drawn on in item development | Responses from the participants were collected, reviewed by the authors, and developed into instrument items | No information on sampling | Yes | Not clear whether formal qualitative research method used. Limited information on sampling and data collection. No mention of formal qualitative analysis. No presentation of data to support focus group themes. No information available on research team |
Ravens-Sieberer et al. [37] | Focus groups with children and adolescents discussed different aspects of their perceived quality of life. Facilitators followed a protocol which contained open questions to very narrow questions | Literature reviews and expert consultation (Delphi study) were used alongside focus groups to determine the dimensions of the measure | No discussion of formal qualitative analysis. Statements derived from the focus groups were rewritten into an item format and reduced using quantitative techniques (including card sorting techniques) | Focus groups took place across different country settings, with children and adolescents of different age ranges and gender | Yes. Parents of children and adolescents were included in the focus groups | Very limited information on sampling and data collection. No discussion of nature of parental involvement in focus groups. No formal qualitative analysis mentioned. No presentation of quotations from focus group data. No information on research team |
Resnick et al. [39] | Focus groups with food-allergic adolescents | Information from literature reviews and the experience of the authors were used alongside focus groups to develop questionnaire items | No formal qualitative analysis discussed | No information on sampling aside from that focus groups took place across three states in the USA | No | No information on sampling, analysis or the research team. No information on how focus groups were conducted or on characteristics of the adolescents involved. No presentation of data from focus groups. Does mention ethical approval for study |
Ronen et al. [23] | Focus groups with children with epilepsy. The groups were modified with pre-set activities to prompt the discussions, which were facilitated by child-life specialists. Activities included drawing maps of important places in the child’s daily life to elicit discussions about their external world and forming playdough to trigger dialogues about their internal world. Each group discussion lasted 90 minutes | No other methods used | Textual analysis of the raw data using the Ethnograph V4.0 software. This consisted of identifying the components of health-related quality of life. The process of coding, categorising, and reassembling the raw data was continuously revised as the field work continued. A higher level of textual analysis followed, discovering relationships and trends, and clustering the codes into smaller numbers of dimensions | Stratified purposeful sampling. Children registered on the Child and Adolescent Epilepsy Database were approached for the study. Families who met the entry criteria were invited by a letter, followed up by a telephone call, to participate in the focus groups. Children were stratified by age and duration of epilepsy | Yes. Parents participated in separate focus groups | High level of information on sampling and data analysis. Focus groups findings were validated with a subset of the original participants. Saturation of the categories emerging from the focus groups was reached. Double coding of focus group data undertaken. No information on research team. Adapted methods were used with children during focus groups. Participant quotations available to support findings |
Rutishauser et al. [71] | Focus groups and three single interviews were used and began with open-ended questions followed by semi-structured interview questions | An initial pool of items for item selection were generated by a critical review of the literature including existing health-related quality-of-life measures and expert opinion | No formal qualitative analysis discussed | Participants were recruited from paediatric asthma clinics in two tertiary hospitals | No | No information on how qualitative data were analysed. Limited information on data collection and sampling. No presentation of quotations from qualitative data. Saturation mentioned. No information available on research team |
Simeoni et al. [35] | Interviews with adolescents. The first part of the interviews were conducted by a trained interviewer and explored in a nondirective way the impact of health on their quality of life. The second part was a semi-structured interview concerning principal topics reported in the international literature | Results of literature review used to inform topics explored in the interviews | Interviews were recorded, transcribed and analysed using content analysis | Adolescents attending public schools in a south-eastern county of France were randomly selected. The population was stratified according to age and socioeconomic status | No | Saturation reached with interview data. Very little information on sampling, data collection or analysis. No empirical data presented from interviews. No information available on the research team, and very little on sampled adolescents |
Stevens [19] | Semi-structured interviews to ask children about how health problems affected their lives. A topic guide was used to facilitate probing around important issues. The format of the interview was first to ask the child about any health problems and then ask additional questions about how the child’s health affected her or his life. All questions asked were open-ended | The author used qualitative research only to ensure that existing literature and measures would not influence findings and item selection | Thematic content analysis with Framework analysis used to identify dimensions of health-related quality of life directly from the data. Data were analysed using NVivo software. The data were charted, producing a matrix of subthemes and respondents. Each subtheme was reviewed for explanations behind the affected areas of health-related quality of life to develop the dimensions | Purposive sampling. Children were sampled from two schools in Sheffield, UK. Schools were chosen to represent diversity in ethnicity and social class. Children were also sampled according to age and health status | No | Sampling, data collection and analysis described in good level of detail. Saturation reached. Quotations from interviews included in the paper to support themes. Author gives some information on background and possible biases (reflexivity). Data only coded by one researcher (although analysis overseen by another researcher). Length of some interviews very short (4–26 minutes). Mentions ethical approval and informed consent (assent) |
Tadic et al. [72] | Semi structured interviews. Questionnaire items were developed by grouping qualitative statements related to general activities, activities related to visual impairment, level of functioning, restrictions and limitations in activities and mobility | Themes from an existing measure were used to inform the analysis framework for qualitative interview data (home, school and leisure themes) | Two researchers independently coded interviews using Nvivo 9 software, grouping together all relevant statements. Statements were reviewed by another two researchers who rated all the statements, with these ratings being compared to inform the final item pool | Stratified sampling approach used. Databases of eligible patients attending two eye hospitals and clinics in the UK were recruited | No | No formal qualitative analysis described. No information on the research team. Some information available on data collection and sampling. Multiple researchers coding qualitative data. Ethics approval for the study mentioned. No themes for interviews presented |
Varni et al. [34] | Open-ended interviews with children and their families | Questionnaire initially based on an extensive search of the relevant literature and discussions with healthcare professionals who care for paediatric cancer patients | No information on qualitative analysis included | Participants were recruited at three major paediatric cancer centres. Description of the sample is also provided (inclusion and exclusion criteria) | Yes. Interviews with parents also | No discussion or detail on data collection, analysis or research team. Very little information on sampling. No presentation of qualitative data from interviews. No information on how parent interviews were carried out |
Waters et al. [45] | Interviews with families of children with cerebral palsy. Interviews lasted 30 minutes | Interview questions were derived from a review of the quality of life literature | The study employed a grounded theory approach. Themes from the interviews were extracted by three researchers. Agreement on key themes was achieved by discussion | Purposive sampling. Families were selected from the Victorian cerebral palsy register (maintained in Melbourne). The sample was intended to be representative of age, socio-economic status, functional severity and geographical location | Yes. Mostly parental interviews but some children with mild impairments were able to take part in interviews with their parents present | No discussion of research team or suggestion that any formal approach to qualitative analysis was used. Topic guide available in appendix of paper but no presentation of interview data. Mentions ethical approval for the study. Some information on aspects of sampling and data collection |