Exploring health-related quality of life, exercise and alcohol use in adolescents with sickle cell disease and healthy siblings

Article

Constantinou, C., Payne, N., van den Akker, O. and Inusa, B. 2024. Exploring health-related quality of life, exercise and alcohol use in adolescents with sickle cell disease and healthy siblings. Psychology & Health. 40 (11), pp. 1875-1895. https://doi.org/10.1080/08870446.2024.2371018
TypeArticle
TitleExploring health-related quality of life, exercise and alcohol use in adolescents with sickle cell disease and healthy siblings
AuthorsConstantinou, C., Payne, N., van den Akker, O. and Inusa, B.
Abstract

Objective
This study explored the health-related quality of life (HRQL) and health behaviours of adolescents with sickle cell disease (SCD) and healthy siblings, drawing on Gap theory which suggests HRQL is the discrepancy between current and ideal selves.
Design
Twenty-three adolescents with SCD and 21 healthy siblings aged 13 to 17 years participated in eight focus groups.
Results
Thematic analysis identified three themes: learning to accept SCD, coping with SCD and influences on health behaviours. Adolescents appear to have normalised and adapted to SCD. Adolescents with SCD have learnt effective coping strategies, such as moderating engagement in exercise. Unlike heathy siblings, they were not encouraged to exercise by parents but were content with their level of participation. Both groups were influenced to exercise by role models or wanting to socialise, and influenced to drink alcohol by peers, but there was limited understanding of the potential negative impacts of alcohol on SCD.
Conclusion
There does not appear to be a discrepancy between adolescents’ current and ideal selves, providing optimism about their HRQL. Further consideration of engaging in healthy behaviours is needed, but it is important to strike a balance so that modifications to lifestyle do not impair HRQL.

KeywordsAdolescents; chronic illness; health-related quality of life; qualitative methods; exercise; alcohol use
Sustainable Development Goals3 Good health and well-being
Middlesex University ThemeHealth & Wellbeing
Research GroupApplied Health Psychology group
PublisherTaylor & Francis (Routledge)
JournalPsychology & Health
ISSN0887-0446
Electronic1476-8321
Publication dates
Online26 Jun 2024
Print02 Nov 2025
Publication process dates
Submitted07 Mar 2022
Accepted17 Jun 2024
Deposited01 Jul 2024
Output statusPublished
Publisher's version
License
File Access Level
Open
Copyright Statement

© 2024 The Author(s). Published by Informa UK Limited, trading as Taylor & Francis Group.
This is an Open Access article distributed under the terms of the Creative Commons Attribution License (http://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, distribution, and reproduction in any medium, provided the original work is properly cited. The terms on which this article has been published allow the posting of the Accepted Manuscript in a repository by the author(s) or with their consent.

Digital Object Identifier (DOI)https://doi.org/10.1080/08870446.2024.2371018
Web of Science identifierWOS:001257050900001
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van den Akker, O. 2011. The psychological and social consequences of miscarriage. Expert Review of Obstetrics & Gynecology. 6 (3), pp. 295-304. https://doi.org/10.1586/eog.11.14
Parental order reporters' attitudes towards their role, surrogacy arrangements and UK legislation
Crawshaw, M., Purewal, S., Khan, F. and van den Akker, O. 2010. Parental order reporters' attitudes towards their role, surrogacy arrangements and UK legislation. Journal of Reproductive and Infant Psychology. 28 (3).
The menstrual cycle: psychological, behavioral, physiological, and nutritional factors
van den Akker, O. 2011. The menstrual cycle: psychological, behavioral, physiological, and nutritional factors. in: Preedy, V., Watson, R. and Martin, C. (ed.) Handbook of Behavior, Food and Nutrition Springer. pp. 879-888
Personal and environmental factors encouraging or preventing healthy lifestyle behaviours among Persian couples: a phenomenological investigation.
Abbasi, M., Bewley, C. and van den Akker, O. 2011. Personal and environmental factors encouraging or preventing healthy lifestyle behaviours among Persian couples: a phenomenological investigation. Journal of Reproductive and Infant Psychology. 29 (2), pp. 136-147. https://doi.org/10.1080/02646838.2011.555910
Learning, teaching and assessment in health psychology.
Payne, N. 2006. Learning, teaching and assessment in health psychology. Health Psychology Update. 15 (2), pp. 4-5.
Family based behavioural management of childhood obesity: Service evaluation of a group programme run in a community setting in the UK.
Murdoch, M., Payne, N., Samani-Radia, D., Rosen-Webb, J., Walker, L., Howe, M. and Lewis, P. 2011. Family based behavioural management of childhood obesity: Service evaluation of a group programme run in a community setting in the UK. European Journal of Clinical Nutrition. 65 (6), pp. 764-767. https://doi.org/10.1038/ejcn.2011.23
Alcohol and fertility
van den Akker, O. 2008. Alcohol and fertility. in: Martin, C. (ed.) Identification and Treatment of Alcohol Dependency M&K Publishers. pp. 349-363
Maternal mental health and wellbeing
Redshaw, M. and van den Akker, O. 2007. Maternal mental health and wellbeing. Journal of Reproductive and Infant Psychology. 25 (4), pp. 253-254. https://doi.org/10.1080/02646830701669497
The contextual challenges of successfully becoming a parent - from inception to completion
van den Akker, O. and Redshaw, M. 2008. The contextual challenges of successfully becoming a parent - from inception to completion. Journal of Reproductive and Infant Psychology. 26 (1), pp. 1-3. https://doi.org/10.1080/02646830701810257
Understanding factors which can influence the experience of pregnancy and childbirth
Redshaw, M. and van den Akker, O. 2008. Understanding factors which can influence the experience of pregnancy and childbirth. Journal of Reproductive and Infant Psychology. 26 (2), pp. 71-73. https://doi.org/10.1080/02646830802016036
Nature and nurture: what do theory and research tell us?
van den Akker, O. 2010. Nature and nurture: what do theory and research tell us? in: Crawshaw, M. and Balen, R. (ed.) Adopting after Infertility: Messages from Practice, Research and Personal Experience Jessica Kingsley Publishers. pp. 164-179
Surrogate mothers
van den Akker, O. 2010. Surrogate mothers. in: Tyano, S., Keren, M., Herrman, H. and Cox, J. (ed.) Parenthood and Mental Health: a Bridge Between Infant and Adult Psychiatry WileyBlackwell. pp. 39-49
How do we view alternative families?
van den Akker, O. 2007. How do we view alternative families? BioNews.
Surrogate motherhood: a critical perspective
van den Akker, O. 2010. Surrogate motherhood: a critical perspective. Expert Review of Obstetrics & Gynecology. 5 (1), pp. 5-7. https://doi.org/10.1586/eog.09.69
The complete guide to infertility: diagnosis, treatment, options
van den Akker, O. 2002. The complete guide to infertility: diagnosis, treatment, options. Free Association Books.
Evaluation of an intervention to help students avoid unintentional plagiarism by improving their authorial identity
Elander, J., Pittam, G., Lusher, J., Fox, P. and Payne, N. 2010. Evaluation of an intervention to help students avoid unintentional plagiarism by improving their authorial identity. Assessment & Evaluation in Higher Education. 35 (2), pp. 157-171. https://doi.org/10.1080/02602930802687745
A daily diary investigation of the impact of work stress on exercise intention realisation: Can planning overcome the disruptive influence of work?
Payne, N., Jones, F. and Harris, P. 2010. A daily diary investigation of the impact of work stress on exercise intention realisation: Can planning overcome the disruptive influence of work? Psychology & Health. 25 (1), pp. 111-129. https://doi.org/10.1080/08870440903337622
Attitudes and intention to donate oocytes for research
Purewal, S. and van den Akker, O. 2010. Attitudes and intention to donate oocytes for research. Fertility and Sterility. 93 (4), pp. 1080-1087. https://doi.org/10.1016/j.fertnstert.2008.11.021
Beliefs and attitudes during pregnancy and post natally [Editorial]
Redshaw, M. and van den Akker, O. 2008. Beliefs and attitudes during pregnancy and post natally [Editorial]. Journal of Reproductive and Infant Psychology. 26 (3), pp. 155-156. https://doi.org/10.1080/02646830802224432
The nature of relationships: maltreatment, mothering and migration [Editorial]
Redshaw, M. and van den Akker, O. 2006. The nature of relationships: maltreatment, mothering and migration [Editorial]. Journal of Reproductive and Infant Psychology. 24 (3), pp. 183-185. https://doi.org/10.1080/02646830600821215
Pregnancy and postnatal states and support: the effects of the partner [Editorial]
Redshaw, M. and van den Akker, O. 2007. Pregnancy and postnatal states and support: the effects of the partner [Editorial]. Journal of Reproductive and Infant Psychology. 25 (3), pp. 171-172. https://doi.org/10.1080/02646830701470243
Factors influencing attitudes towards potential oocyte donation for research
Purewal, S. and van den Akker, O. 2008. Factors influencing attitudes towards potential oocyte donation for research. Annual Conference of the British Psychological Society.. The Royal Dublin Society, Ireland.
Contribution of generalized negative affect to elevated menstrual cycle symptom reporting
van den Akker, O., Sharifian, N., Packer, A. and Eves, F. 1995. Contribution of generalized negative affect to elevated menstrual cycle symptom reporting. Health Care for Women International. 16 (3), pp. 263-272. https://doi.org/10.1080/07399339509516177
British women's attitudes towards oocyte donation: ethnic differences and altruism
Purewal, S. and van den Akker, O. 2006. British women's attitudes towards oocyte donation: ethnic differences and altruism. Patient Education and Counseling. 64 (1), pp. 43-49. https://doi.org/10.1016/j.pec.2005.11.007
The feasibility of nursing patients with sickle cell crisis at home
Smith-Wynter, L. and van den Akker, O. 1999. The feasibility of nursing patients with sickle cell crisis at home. British Journal of Community Nursing. 4 (10), pp. 531-537.
Patient perceptions of crisis pain management in sickle cell disease: a cross-cultural study
Smith-Wynter, L. and van den Akker, O. 2000. Patient perceptions of crisis pain management in sickle cell disease: a cross-cultural study. Nursing Times Research. 5 (3), pp. 204-213. https://doi.org/10.1177/136140960000500307
A review of psychosocial and family functioning following assisted reproductive treatment
Segev, J. and van den Akker, O. 2006. A review of psychosocial and family functioning following assisted reproductive treatment. Clinical Effectiveness in Nursing. 9 (Supple), pp. e162-e170. https://doi.org/10.1016/j.cein.2006.08.002
Psychological adaptation and symptom distress in bone marrow transplant recipients
Molassiotis, A., van den Akker, O., Milligan, D., Goldman, J. and Boughton, B. 1996. Psychological adaptation and symptom distress in bone marrow transplant recipients. Psycho-Oncology. 5 (1), pp. 9-22. https://doi.org/10.1002/(SICI)1099-1611(199603)5:1<9::AID-PON198>3.0.CO;2-4
Organizational selection and assessment of women entering a surrogacy agreement in the UK
van den Akker, O. 1999. Organizational selection and assessment of women entering a surrogacy agreement in the UK. Human Reproduction. 14 (1), pp. 262-266. https://doi.org/10.1093/humrep/14.1.262
Genetic and environmental factors in premenstrual symptom reporting and its relationship to depression and a general neuroticism trait
van den Akker, O., Eves, F., Stein, G. and Murray, R. 1995. Genetic and environmental factors in premenstrual symptom reporting and its relationship to depression and a general neuroticism trait. Journal of Psychosomatic Research. 39 (4), pp. 477-487. https://doi.org/10.1016/0022-3999(94)00152-U
Coping, quality of life and psychological symptoms in three groups of sub-fertile women
van den Akker, O. 2005. Coping, quality of life and psychological symptoms in three groups of sub-fertile women. Patient Education and Counseling. 57 (2), pp. 183-189. https://doi.org/10.1016/j.pec.2004.05.012
Genetic and gestational surrogate mothers' experience of surrogacy
van den Akker, O. 2003. Genetic and gestational surrogate mothers' experience of surrogacy. Journal of Reproductive and Infant Psychology. 21 (2), pp. 145-161. https://doi.org/10.1080/0264683031000124091
The acceptable face of parenthood: the relative status of biological and cultural interpretations of offspring in infertility treatment
van den Akker, O. 2001. The acceptable face of parenthood: the relative status of biological and cultural interpretations of offspring in infertility treatment. Psychology, Evolution & Gender. 3 (2), pp. 137-153. https://doi.org/10.1080/14616660110067366
Leisure activities and adolescent sexual behaviour
van den Akker, O. and Lees, S. 2001. Leisure activities and adolescent sexual behaviour. Sex Education. 1 (2), pp. 137-147. https://doi.org/10.1080/14681810120052560
Adoption in the age of reproductive technology
van den Akker, O. 2001. Adoption in the age of reproductive technology. Journal of Reproductive and Infant Psychology. 19 (2), pp. 147-159. https://doi.org/10.1080/02646830125231
A review of family donor constructs: current research and future directions
van den Akker, O. 2006. A review of family donor constructs: current research and future directions. Human Reproduction Update. 12 (2), pp. 91-101. https://doi.org/10.1093/humupd/dmi038
Surrogate motherhood: demystifying the controversies
van den Akker, O. 1998. Surrogate motherhood: demystifying the controversies. British Journal of Midwifery. 6 (12), pp. 768-770.
Adolescent sexual behaviour and knowledge
van den Akker, O., Andre, J., Lees, S. and Murphy, T. 1999. Adolescent sexual behaviour and knowledge. British Journal of Midwifery. 7 (12), pp. 765-769.
Psychosocial aspects of surrogate motherhood
van den Akker, O. 2007. Psychosocial aspects of surrogate motherhood. Human Reproduction Update. 13 (1), pp. 53-62. https://doi.org/10.1093/humupd/dml039
Something old, something new, something borrowed, and something taboo
van den Akker, O. 1994. Something old, something new, something borrowed, and something taboo. Journal of Reproductive and Infant Psychology. 12 (3), pp. 179-188. https://doi.org/10.1080/02646839408408884
Psychophysiological responses in women reporting severe premenstrual symptoms
van den Akker, O. and Steptoe, A. 1989. Psychophysiological responses in women reporting severe premenstrual symptoms. Psychosomatic Medicine: Journal of Biobehavioral Medicine. 51 (3), pp. 319-328.
Menstrual cycle symptom reporting in three British ethnic groups
van den Akker, O., Eves, F., Service, S. and Lennon, B. 1995. Menstrual cycle symptom reporting in three British ethnic groups. Social Science & Medicine. 40 (10), pp. 1417-1423. https://doi.org/10.1016/0277-9536(94)00265-U
The retrospective diagnosis of postnatal depression by questionnaire
Stein, G. and van den Akker, O. 1992. The retrospective diagnosis of postnatal depression by questionnaire. Journal of Psychosomatic Research. 36 (1), pp. 67-75. https://doi.org/10.1016/0022-3999(92)90115-I
Comparison of the overall quality of life in 50 long-term survivors of autologous and allogeneic bone marrow transplantation
Molassiotis, A., Boughton, B., Burgoyne, T. and van den Akker, O. 1995. Comparison of the overall quality of life in 50 long-term survivors of autologous and allogeneic bone marrow transplantation. Journal of Advanced Nursing. 22 (3), pp. 509-516. https://doi.org/10.1046/j.1365-2648.1995.22030509.x
Symptom distress, coping style and biological variables as predictors of survival after bone marrow transplantation
Molassiotis, A., van den Akker, O., Milligan, D. and Goldman, J. 1997. Symptom distress, coping style and biological variables as predictors of survival after bone marrow transplantation. Journal of Psychosomatic Research. 42 (3), pp. 275-285. https://doi.org/10.1016/S0022-3999(96)00298-X
Perceived social support, family environment and psychosocial recovery in bone marrow transplant long-term survivors
Molassiotis, A., van den Akker, O. and Boughton, B. 1997. Perceived social support, family environment and psychosocial recovery in bone marrow transplant long-term survivors. Social Science & Medicine. 44 (3), pp. 317-325. https://doi.org/10.1016/S0277-9536(96)00101-3
The quality of life of renal dialysis patients: trying to find the missing measurement
Killingworth, A. and van den Akker, O. 1996. The quality of life of renal dialysis patients: trying to find the missing measurement. International Journal of Nursing Studies. 33 (1), pp. 107-120. https://doi.org/10.1016/0020-7489(95)00040-2
Dysmenorrhoea, mental attitude and GP consultation
Hewison, A. and van den Akker, O. 1996. Dysmenorrhoea, mental attitude and GP consultation. British Journal of Nursing. 5 (8), pp. 480-484.
Service provision for sickle-cell disease: school-based education
Eboh, W. and van den Akker, O. 1996. Service provision for sickle-cell disease: school-based education. British Journal of Nursing. 5 (1), pp. 30-33.
eHealth as a challenge to ‘expert’ power: a focus group study of internet use for health information and management
Donnelly, L., Shaw, R. and van den Akker, O. 2008. eHealth as a challenge to ‘expert’ power: a focus group study of internet use for health information and management. Journal of the Royal Society of Medicine. 101 (10), pp. 501-506. https://doi.org/10.1258/jrsm.2008.080156
Developing a Year 9 safe-sun programme: adolescents form a particularly high-risk group, in need of specific skin-protective information and advice
Colley, K. and van den Akker, O. 1998. Developing a Year 9 safe-sun programme: adolescents form a particularly high-risk group, in need of specific skin-protective information and advice. Education and Health. 16 (3), pp. 42-47.
Disclosing donor information: a new code of silence?
Blyth, E., Crawshaw, M. and van den Akker, O. 2009. Disclosing donor information: a new code of silence? BioNews.
Attitudes and intentions towards volunteer oocyte donation
Purewal, S. and van den Akker, O. 2009. Attitudes and intentions towards volunteer oocyte donation. Reproductive BioMedicine Online. 19, pp. 19-26. https://doi.org/10.1016/S1472-6483(10)60059-4
Systematic review of oocyte donation: investigating attitudes, motivations and experiences
Purewal, S. and van den Akker, O. 2009. Systematic review of oocyte donation: investigating attitudes, motivations and experiences. Human Reproduction Update. 15 (5), pp. 499-515. https://doi.org/10.1093/humupd/dmp018
Occupational stressors and coping as determinants of burnout in female hospice nurses
Payne, N. 2001. Occupational stressors and coping as determinants of burnout in female hospice nurses. Journal of Advanced Nursing. 33 (3), pp. 396-405. https://doi.org/10.1046/j.1365-2648.2001.01677.x
A study of the effect of message framing on oocyte donation
Purewal, S. and van den Akker, O. 2009. A study of the effect of message framing on oocyte donation. Human Reproduction. 24 (12), pp. 3136-3143. https://doi.org/10.1093/humrep/dep342
'I feel like they were mine and I should be looking after them': an exploration of non-patient women's attitudes towards oocyte donation
Purewal, S. and van den Akker, O. 2009. 'I feel like they were mine and I should be looking after them': an exploration of non-patient women's attitudes towards oocyte donation. Journal of Psychosomatic Obstetrics and Gynecology. 30 (4), pp. 215-222. https://doi.org/10.3109/01674820903348732
Student beliefs and attitudes about authorial identity in academic writing
Pittam, G., Elander, J., Lusher, J., Fox, P. and Payne, N. 2009. Student beliefs and attitudes about authorial identity in academic writing. Studies in Higher Education. 34 (2), pp. 153-170. https://doi.org/10.1080/03075070802528270
Learning, teaching and assessment of Health Psychology MSc courses: results from a survey.
Payne, N. 2008. Learning, teaching and assessment of Health Psychology MSc courses: results from a survey. Health Psychology Update. 17 (2), pp. 34-40.
Work stress and health behaviour: daily diary methodology and multilevel modelling
Payne, N. and Jones, F. 2007. Work stress and health behaviour: daily diary methodology and multilevel modelling. Health Psychology Update. 16 (3), pp. 13-20. https://doi.org/10.53841/bpshpu.2007.16.3.13
Psychological trait and state characteristics, social support and attitudes to the surrogate pregnancy and baby
van den Akker, O. 2007. Psychological trait and state characteristics, social support and attitudes to the surrogate pregnancy and baby. Human Reproduction. 22 (8), pp. 2287-2295. https://doi.org/10.1093/humrep/dem155
The socio-cultural and biological meaning of parenthood
Purewal, S. and van den Akker, O. 2007. The socio-cultural and biological meaning of parenthood. Journal of Psychosomatic Obstetrics and Gynecology. 28 (2), pp. 79-86. https://doi.org/10.1080/01674820701409918
Work stress and health behaviours: a work—life balance issue
Jones, F., Kinman, G. and Payne, N. 2006. Work stress and health behaviours: a work—life balance issue. in: Jones, F., Burke, R. and Westman, M. (ed.) Work-life balance: a psychological perspective Psychology Press. pp. 185-216
A longitudinal pre-pregnancy to post-delivery comparison of genetic and gestational surrogate and intended mothers: confidence and genealogy
van den Akker, O. 2005. A longitudinal pre-pregnancy to post-delivery comparison of genetic and gestational surrogate and intended mothers: confidence and genealogy. Journal of Psychosomatic Obstetrics and Gynecology. 26 (4), pp. 277-284. https://doi.org/10.1080/01674820500165745
The impact of job strain on the predictive validity of the theory of planned behaviour: an investigation of exercise and healthy eating
Payne, N., Jones, F. and Harris, P. 2005. The impact of job strain on the predictive validity of the theory of planned behaviour: an investigation of exercise and healthy eating. British Journal of Health Psychology. 10 (1), pp. 115-131. https://doi.org/10.1348/135910704X14636
The role of perceived need within the theory of planned behaviour: a comparison of exercise and healthy eating
Payne, N., Jones, F. and Harris, P. 2004. The role of perceived need within the theory of planned behaviour: a comparison of exercise and healthy eating. British Journal of Health Psychology. 9 (4), pp. 489-504. https://doi.org/10.1348/1359107042304524
The impact of working life on health behavior: the effect of job strain on the cognitive predictors of exercise
Payne, N., Jones, F. and Harris, P. 2002. The impact of working life on health behavior: the effect of job strain on the cognitive predictors of exercise. Journal of Occupational Health Psychology. 7 (4), pp. 342-353. https://doi.org/10.1037/1076-8998.7.4.342
The importance of a genetic link in mothers commissioning a surrogate baby in the UK
van den Akker, O. 2000. The importance of a genetic link in mothers commissioning a surrogate baby in the UK. Human Reproduction. 15 (8), pp. 1849-1855. https://doi.org/10.1093/humrep/15.8.1849
Functions and responsibilities of organizations dealing with surrogate motherhood in the UK
van den Akker, O. 1998. Functions and responsibilities of organizations dealing with surrogate motherhood in the UK. Human Fertility. 1 (1), pp. 10-13. https://doi.org/10.1080/1464727982000198031
The pattern and prevalence of symptoms during the menstrual cycle
van den Akker, O. and Steptoe, A. 1985. The pattern and prevalence of symptoms during the menstrual cycle. The British Journal of Psychiatry. 147 (2), pp. 164-169. https://doi.org/10.1192/bjp.147.2.164