SCIE research briefing 11: The health and well-being of young carers
Critical appraisals
Armstrong C. (2002). Behind closed doors - living with a parent’s mental illness. Young Minds, 61.
The aim of the study was clearly defined: to evaluate a support project specifically for young carers with a parent with mental illness. A qualitative approach was appropriate to elicit a range of views and information from the young carers about the value of the project. The authors clearly justified the study design used. The study successfully approached all young carers in the project, as well as two former members. Twelve young people aged between 12 and 18 were interviewed, of which 11 lived with a parent experiencing mental health problems, and 1 with a sibling who was similarly unwell.
The data were collected by semi-structured interview and focus groups, and the method justified. The focus groups were used to inform the agenda of the interviews. In this way a degree of triangulation was achieved. The setting and circumstances of the interviews were not described, and the relationship between researcher and participants was not considered. No information was given about how the interviews were recorded, and there was no discussion of ethical issues. There was no description of data analysis, how categories or themes were derived, or how their selection for the reported findings was justified.
There is only a very brief discussion of the findings, and these were not supported by quotations or other data. The findings were discussed with clear reference to the aims of the study, however, and some of its limitations were acknowledged. Some policy implications were considered.
This is limited qualitative study. The study offers some original findings on the evaluation of a single project to support young carers, but as a reported study it has a number of important weaknesses, especially concerning reflexivity, data collection, analysis and presentation of the findings. It is not presented as a full research paper, however, so its brevity is perhaps understandable.
This critical appraisal was performed using the following tool:
CASP collaboration for qualitative methodologies (2002). 10 questions to help you make sense of qualitative research
Available from: http://www.phru.nhs.uk/casp/qualitat.htm
[Accessed 1 February 2005].
Banks P., Cogan N., Deeley S., Hill M., Riddell S., Tisdall K. (2001). Seeing the invisible children and young people affected by disability. Disability and Society, 16 (6), 797-814.
This study employed both qualitative and quantitative approaches. The aims of the studies were clearly defined: to record the nature and prevalence of caring among 11-17 year-olds; to explore the experiences of children with caring responsibilities; to assess the consequences of caring; and to identify the service needs of this group. Surveys were appropriate for ascertaining the numbers of children performing caring roles and for providing basic data on its impact, and focus groups and interviews were appropriate for investigating the experiences and needs of this group. The authors did not justify the study designs used, however.
Study 1
This study recruited relevant participants: interviews with 18 service providers, 68 parents and carers responding to a postal survey, and one-to-one interviews with 21 young carers. However, no details were given of the process of recruitment. No details were given of the data collection methods beyond the use of a stated survey instrument or one-to-one interview. Non-response or drop-out rates were given. The relationship between researcher and participants was not considered, and no reference was made to ethical issues. There was no description of data analysis, how categories or themes were derived, or how their selection for the reported findings was justified. The findings were reported and discussed only briefly, and there was no discreet or separate discussion of the findings from the different parts of the study.
Study 2
This study involved the following means of data collection: a survey of 509 school-children; a survey of 20 parents or carers; comparative focus group interviews with 12 young carers and 12 non-carers; and one-to-one interviews with an additional 14 young carers. However, no details were given of the process of recruitment; demographic details were also provided of the area from which the sample was taken, but not of the participants. The numbers given for the survey of school children were not reported consistently. No details were given of the data collection beyond the use of a stated survey and interviews; a self-esteem scale used in the survey was named but no reference was cited. No numbers were given of non-response and drop-out rates, or of numbers who were approached but refused to participate in the interviews. The relationship between researcher and participants was not considered, and no reference was made to ethical issues. There was a brief discussion of the statistical analysis performed on the survey data, but the methods were generally not described. Statistical significance was assessed for a number of variables. There was only a brief discussion of the findings with reference to both the survey and the interviews: no quotations were given from the interviews. There was no discreet or separate discussion of the findings of the different parts of the study. There was some discussion of the findings with reference to existing policy and research literature, and reference to the aims of the study. Recommendations for policy and practice were given.
This is an ambitious paper describing two separate studies, each involving different study designs. This may have been an attempt to pre-empt the criticisms usually directed at research in this field, such as the failure to seek data from as many sources as possible, including control groups, and the use of one-to-one interviews only. However, despite offering some interesting insights into the prevalence, views and needs of young carers, this paper also has substantial weaknesses of methodology and presentation. For example, the authors fail to provide vital information and detail on the methodologies or analysis used in their research. It is therefore impossible to evaluate this paper effectively. The absence of so much important detail concerning recruitment, as well as data collection and analysis, compromises the validity of the study.
This critical appraisal was performed using the following tools:
CASP collaboration for qualitative methodologies (2002). 10 questions to help you make sense of qualitative research
Available from: http://www.phru.nhs.uk/casp/qualitat.htm
[Accessed 1 February 2005].
Crombie I. K. (1997). Appraising surveys. In: The Pocket Guide to Critical Appraisal. A Handbook for Health Care Professionals. London, BMJ Publishing Group. pp. 30-36.
Cree V.E. (2003). Worries and problems of young carers: issues for mental health. Child and Family Social Work, 8 (4), 301-309.
This study employed both qualitative and quantitative approaches. The aims of the study were clearly defined: to discover whether young carers experience mental health problems. Surveys were appropriate for building a profile of the families and the responsibilities of young carers, and interviews were appropriate for exploring the worries of this group and their attitude towards their responsibilities. The authors also briefly justified the use of both types of study design. Sixty-one children aged between 5 and 16 years responded to the survey, and 11 children aged between 9 and 17 years took part in the interviews,
There was a full discussion of how participants were selected for the interviews, and the authors acknowledged the self-selecting nature of the interview sample. They also discussed the problems of devising appropriate ways of asking about young carers’ mental health. Few details were given of the content of the survey or of any topic guide or equivalent for the interviews, however: the survey used closed and open questions and was used to validate and inform the interviews. A degree of triangulation was therefore achieved. No details were given of the response rate of the survey. The setting for the interviews was not given, and the relationship between researcher and participants was not considered. Interviews were taped. Ethical issues were considered and discussed, and different and appropriate forms of consent acquired before proceeding with the study. There was only a very brief description of the data analysis.
There was a long and full discussion of the findings of the interviews. Quotations and statistically significant associations were used to support the reported results, and the findings were discussed with reference to the named aims of the study. There was little reference to existing literature on the topic, however. Recommendations for policy and practice were given.
This is a good study employing triangulation, and supported by clear findings. The study offers useful original findings on the mental health of young carers, as well as considering issues of gender and ethnicity. The only real weakness is the smallness of the sample. More detail could also have been given on data collection and analysis.
This critical appraisal was performed using the following tools:
CASP collaboration for qualitative methodologies (2002). 10 questions to help you make sense of qualitative research
Available from: http://www.phru.nhs.uk/casp/qualitat.htm
[Accessed 1 February 2005].
Crombie I. K. (1997). Appraising surveys. In: The Pocket Guide to Critical Appraisal. A Handbook for Health Care Professionals. London, BMJ Publishing Group. pp. 30-36.
Eley S. (2004). 'If they don't recognize it, you've got to deal with it yourself': gender, young caring and educational support. Gender and Education, 16 (1), 65-75.
The aim of the study was clearly defined: to record perspectives on caring by young carers. A qualitative approach was appropriate for investigating these views. The authors also justified this study design. The study did recruit appropriate individuals, but the sample also had limitations, some of which are acknowledged by the authors. These include its small size and its homogeneity. It is not made very clear how the participants were recruited, however: for example, why certain individuals were approached and not others. The author also discussed problems of recruitment. Eleven children and young people aged between 10 and 17 years were interviewed.
The data were collected by unstructured interviews, some of which were taped. The taping was only conducted with the consent of the interviewee. If this changed during the interview, it was recorded by the authors. Written notes were taken as the alternative. The choice of unstructured interview was justified by the author, and the author also acknowledged their own influence on the research process. Drop-out rates were given and explained. Ethical issues were considered and discussed fully, and different and appropriate forms of consent acquired before proceeding with the study. There was no description of data analysis, how categories or themes were derived, or how their selection for the reported findings was justified.
There was a long discussion of the findings, and frequent use of quotations to support the reported results. The findings were discussed with reference to existing policy and research literature, and with reference to the aims of the study. The limitations of the study were also acknowledged. Recommendations for policy and practice were given.
This is a good qualitative study supported by clear findings. The study offers some useful insights into the perspectives of young carers on a range of issues. The weaknesses are the smallness of the sample and the lack of information about how the data were analysed and selected for presentation.
This critical appraisal was performed using the following tool:
CASP collaboration for qualitative methodologies (2002). 10 questions to help you make sense of qualitative research
Available from: http://www.phru.nhs.uk/casp/qualitat.htm
[Accessed 1 February 2005].
Frank J., Tatum C., Tucker C. (1999). On Small Shoulders: Learning from the Experiences of Former Carers. London, Children's Society.
This study employed both qualitative and quantitative approaches. The aim of the study was clear but quite general: to explore the short- and long-term outcomes of caring on former young carers. Semi-structured interviews were appropriate for assessing former young carers’ experiences and attitudes towards their previous role. The authors provided a full discussion and justification of the use of interviews to inform the study; they also cited the possibility of contacting larger numbers as the justification for the additional survey. Twenty-five former young carers were interviewed, and forty-one responded to the survey.
There was a full discussion of how participants were selected for the interviews, although the authors did not acknowledge the possible self-selecting nature of the sample. There was no discussion of how survey participants were selected. The method and setting of the qualitative data collection was described fully. These data were collected by interview in a range of settings depending on the preference of the interviewee. All of the interviews were taped. Drop-out rates for the interviews and survey were given and explained; but response rates for the survey were not given. Ethical issues were considered: participants were informed of the purpose and outcomes of the study, and consent was acquired before proceeding with the study. The researchers also considered their own role and its influence on the research findings. There was no description of data analysis, how categories or themes were derived, or how their selection for the reported findings was justified. Almost no details were given of the validity, aims, content or analysis of the survey questionnaires.
There was a long and full discussion of the findings of the interviews. Quotations were used to support the reported results, and the findings were discussed with reference to the named aims of the study. The authors also put the findings very clearly in a policy context, but there was otherwise little reference to existing literature on the topic. Recommendations for policy and practice were given. It is unclear whether any data from the survey were being used in the results and discussion: the results of the survey appear to be limited to descriptive statistics in Appendix 2, and the numbers do not always add-up (eg. the chart for "How long were they carers" records results from only 40 of the 41 participants).
This study has some good qualities, such as the methods of data collection, the acknowledgement of reflexivity, and the presentation of the data. The qualitative research performed for this study offers some especially useful findings on the consequences of caring as perceived by former young carers. The paper also has some general weaknesses, however, such as the smallness of the samples, and the lack of any meaningful description of the data analysis or selection. The survey element of the study is of very limited value.
This critical appraisal was performed using the following tools:
CASP collaboration for qualitative methodologies (2002). 10 questions to help you make sense of qualitative research
Available from: http://www.phru.nhs.uk/casp/qualitat.htm
[Accessed 1 February 2005].
Crombie I. K. (1997). Appraising surveys. In: The Pocket Guide to Critical Appraisal. A Handbook for Health Care Professionals. London, BMJ Publishing Group. pp. 30-36.
Shah R. & Hatton C. (1999). Caring Alone. Young Carers in South Asian Communities. Ilford, Essex, Barnardos.
The aims of the study were very clearly defined: to understand the experiences of young carers from South Asian communities. A qualitative approach was appropriate for an in-depth exploration of these young carers’ experiences. The authors fully and clearly justified the study design used. The study recruited appropriate individuals, who complied with stated criteria. Numbers who were approached, but declined to take part in the study, were not given.
The data were collected by semi-structured interview and the method justified. The setting and circumstances of the interviews were described in detail, justified and explained. The questions and responses were taped. Ethical issues were considered and discussed. The relationship between researcher and participants was not considered, however. Full details of the data analysis were given, including validated coding, but there was no description of how data were selected for the reported findings.
There was an extensive discussion of the findings, which were very clearly presented and supported by the data, including case studies and quotations. The findings were discussed with clear reference to the aims of the study, and the limitations of the study were also acknowledged. Policy implications were considered and recommendations were given.
This is a good qualitative study which offers a clear description of the methods of data collection and analysis, and presents its data fully and clearly. The study offers important insights into the views and experiences of young carers from a particular ethnic community. The weaknesses are the smallness of the sample, the lack of reflexivity, and limited reference to the research literature in the discussion of the study’s findings.
This critical appraisal was performed using the following tool:
CASP collaboration for qualitative methodologies (2002). 10 questions to help you make sense of qualitative research
Available from: http://www.phru.nhs.uk/casp/qualitat.htm
[Accessed 1 February 2005].
Thomas N., Stainton T., Jackson S., Cheung W.Y., Doubtfire S., Webb A. (2003). 'Your friends don't understand': Invisibility and unmet need in the lives of 'young carers'. Child and Family Social Work, 8 (1), 35-46.
The aims of the study were clearly defined: to explore the characteristics of young carers and to record their views of their experiences, hopes and expectations. A qualitative approach was appropriate for discovering these attitudes and opinions, and the authors fully justified the study design. The study recruited appropriate individuals from a broad range of backgrounds. The authors also discussed problems of recruitment in detail. The study interviewed 21 girls and boys aged between 9 and 18 years.
The data were collected by semi-structured interviews using questions validated by work with a focus group of young carers. The setting for the interviews was not given, and the relationship between researcher and participants was not considered. The interviews were taped, transcribed and the data analysed. Data analysis was carried out using Winmax, but there was no description of how categories or themes were derived, or how their selection for the reported findings was justified. Ethical issues were considered and discussed fully, and different and appropriate forms of consent acquired before proceeding with the study.
There was a long discussion of the findings, and frequent use of quotations to support the reported results. The quotations were sometimes weighted to negative consequences of caring, however. For example, only half of the participants reported problems with school and quotations were provided to detail this, but no quotations were provided from the half of the sample who reported that school presented no such problems. The findings did refer to the aims of the study, but there was limited reference to existing policy and research literature in the discussion. Recommendations for policy and practice were given.
This is a good qualitative study supported by sound data collection methods and clearly presented findings. The study offers some useful insights into the perspectives of young carers on a range of issues. The weaknesses of the study are the lack of information about reflexivity or how the data were analysed, and the limited amount of literature cited in the discussion of the study’s findings.
This critical appraisal was performed using the following tool:
CASP collaboration for qualitative methodologies (2002). 10 questions to help you make sense of qualitative research
Available from: http://www.phru.nhs.uk/casp/qualitat.htm
[Accessed 1 February 2005].
