Sickle cell disease related fatigue in adolescence: What do gender and the body have to do with it?
Lead Research Organisation:
University of Nottingham
Department Name: Sch of Sociology & Social Policy
Abstract
SCD is the commonest inherited blood disorder globally, which is characterised predominantly by fatigue and acute and severe pains (Piel et al., 2013). Unlike pain, fatigue is under-recognised in research and care. This lack of attention is perhaps due to the perception that fatigue is an inevitable and ubiquitous consequence of the condition, about which nothing can be done and therefore must be endured by those living with SCD. Thus, individuals with SCD may be reluctant to raise fatigue during clinical consultations, while health professionals may give insufficient priority to fatigue, by focusing on the more obvious aspects of SCD (While & Mullen, 2004). Adolescents with SCD may be particularly vulnerable to the effects of fatigue due to the increased activity demands and expectations associated with increasing desire for autonomy and independence, and pursuit of education, careers, intimate relationships and starting a family (Ameringer et al., 2014). Therefore, ignoring fatigue means a significant aspect of adolescents' daily experience is overlooked in how they are supported and cared for by care providers and families. To understand how adolescents with SCD experience fatigue, my doctoral work adopted the constructivist grounded theory approach by Charmaz (2014) to construct a theory, based on the experiences of adolescents with SCD in Ghana to explain SCD-related fatigue in adolescence. The findings showed that fatigue was the most restrictive and disruptive aspect of the daily lives of adolescents with SCD. Fatigue was omnipresent and had a significant negative impact on daily functioning, pain experiences, emotional well-being, self/social development, and future outlook. Fatigue resulted in stigma, social isolation and exclusion. The study found sociocultural values and expectations within the Ghanaian context to contribute significantly to the experiences.
The fellowship will focus on four objectives. (1) My PhD data suggests gender differences in the fatigue experiences that require sociological analysis to fully tease out the sociological implications to contribute to the sociology of health and illness more widely and the sociology of the body. This will enhance the depth of the evidence and its sociological contributions. (2) Engage with SCD-focused third sector organisations, healthcare providers and families of adolescents with SCD in Ghana. The engagement activities in Ghana is integral to the fellowship. The activities will support communicating research findings; and ensuring knowledge and attitudinal change among key stakeholders in Ghana, regarding fatigue in SCD. (3) Two peer-reviewed articles in Social Science and Medicine and Sociology of Health and Illness based on the sociological analysis, plus a paper in BMC Research Involvement and Engagement based on the engagement activities in Ghana. Opportunities will be sought to present the new knowledge at relevant conferences. (4) Develop a funding proposal to build on and continue my work in this field.
The fellowship will thus provide ample opportunities to undertake key activities I could not focus on during my PhD, i.e. focus on aspects of my PhD data regarding gender and the body, and on achieving impact in Ghana. It will also provide opportunity to further my current professional skills/competencies. Planned journal papers will support the creation of a publication track record and improve my academic writing skills. Dissemination/impact events will provide spaces to network and enhance my communication skills for both academic and non-academic audiences across different contexts and disciplines. The fellowship will also enable me to develop a funding proposal to continue my work in the field. The activities planned for the fellowship will therefore consolidate my research skills, contribute to my professional development, facilitate my transition to an established early career researcher, and springboard my academic career in medical sociology.
The fellowship will focus on four objectives. (1) My PhD data suggests gender differences in the fatigue experiences that require sociological analysis to fully tease out the sociological implications to contribute to the sociology of health and illness more widely and the sociology of the body. This will enhance the depth of the evidence and its sociological contributions. (2) Engage with SCD-focused third sector organisations, healthcare providers and families of adolescents with SCD in Ghana. The engagement activities in Ghana is integral to the fellowship. The activities will support communicating research findings; and ensuring knowledge and attitudinal change among key stakeholders in Ghana, regarding fatigue in SCD. (3) Two peer-reviewed articles in Social Science and Medicine and Sociology of Health and Illness based on the sociological analysis, plus a paper in BMC Research Involvement and Engagement based on the engagement activities in Ghana. Opportunities will be sought to present the new knowledge at relevant conferences. (4) Develop a funding proposal to build on and continue my work in this field.
The fellowship will thus provide ample opportunities to undertake key activities I could not focus on during my PhD, i.e. focus on aspects of my PhD data regarding gender and the body, and on achieving impact in Ghana. It will also provide opportunity to further my current professional skills/competencies. Planned journal papers will support the creation of a publication track record and improve my academic writing skills. Dissemination/impact events will provide spaces to network and enhance my communication skills for both academic and non-academic audiences across different contexts and disciplines. The fellowship will also enable me to develop a funding proposal to continue my work in the field. The activities planned for the fellowship will therefore consolidate my research skills, contribute to my professional development, facilitate my transition to an established early career researcher, and springboard my academic career in medical sociology.
Publications
Poku B
(2022)
How a child's gender mediates maternal care and expectations in the fatigue experiences of adolescents with sickle cell disease
in Journal of Family Studies
Poku B
(2022)
Biographical accounts of the impact of fatigue in young people with sickle cell disease
in Sociology of Health & Illness
Poku BA
(2022)
Research knowledge transfer to improve the care and support of adolescents with sickle cell disease in Ghana.
in Health expectations : an international journal of public participation in health care and health policy
| Description | During the fellowship, I submitted 3 journal articles.: 1. Poku, BA & Pinick, A. Biographical accounts of the impact of fatigue in young people with sickle cell disease, Sociology of Health and Illness. Following major revisions (largely expansions and clarifications), the article has been accepted upon minor revisions (largely typos), which have been addressed and resubmitted on 12 March 2022. 2. Poku, BA & Pilnick, A. Research Knowledge transfer to improve the care and support of adolescents with sickle cell disease in Ghana, Health Expectations. This required some revisions (largely expansions and clarifications) before acceptance. Reviewers and editorial comments have been addressed and resubmitted on 6th March 2022. 3. Poku, BA. Pilnick, A. & Kirk, S. How a child's gender mediates maternal care and expectations in the fatigue experiences of adolescents with sickle cell disease, Journal of Family Studies. This article has been under review for more 8 months; correspondence with the editor revealed a familiar picture of a pandemic context where more fewer reviewers are available or willing to referee a paper. Nonethless, revisions (largely expansions and clarifications) before acceptance have been received recently, addressed and resubmitted on 12 March 2022. |
| Exploitation Route | When the journal article for the Journal of Family Studies is finally published, it will add to the scholarly work regarding parenting children and young people with sickle cell disease specifically and chronic illness general. The paper highlights how culturally-mediated gender expectations that shape socialisation norms also influence parental care and their implications for children and young people with sickle cell disease sense of self, social status, and ability to pursue independence and self-care. This key finding suggests the need for health practitioners to consider the socio-cultural norms and expectations associated with the gender of a child or young person with chronic illness during parental education and family interventions. Similarly, when the journal article for Sociology of Health and Illness is finally published, it will add to the scholarly work regarding biographical narrative concepts: "biographical disruption" and "normal illness". The paper argues that these concepts do not easily accommodate the experiences of children and young people with congenital chronic illnesses like sickle cell disease, as their sense of (un)disruption and normality/continuity is contextualised relative to normative expectations about what it is to be a young person. At biographical transition points, illness/symptoms present from birth may evolve, shift and become experiences as new, different or non-normal. They may become restrictive rather than continuous or disruptive. These experiences are influenced by normative biographical expectations and the pursuit of identity affirmations. We propose that biographical restriction, enactment, abandonment and reframing are more relevant concepts for understanding the experiences of children and young people living with sickle cell disease. Likewise, when the journal article for Health Expectations are published, it will add to the limited body of work on knowledge exchange practice in low- and middle-income contexts. It describes a model of developing, planning and disseminating research findings in an LMIC that links research dissemination activities to broader clinical and community goals for improving care and support for children and young people with sickle cell disease in Ghana. The article is based on knowledge exchange work I undertook as part of the award. It recommends that future dissemination projects be geared towards meeting local informational needs by being grounded in local empirical findings and knowledge, rather than untested theoretical propositions, and involve systematic process and outcome evaluation to contribute to the dissemination activities and outcomes. |
| Sectors | Communities and Social Services/Policy Healthcare |
| Description | As part of the award, knowledge exchange workshops were undertaken to engage three stakeholder groups in Ghana with the research outcomes: parents/carers of children and young people with sickle cell disease, healthcare professionals and representatives from the Sickle Cell Association of Ghana. A follow-up six months post the workshops indicated the following knowledge usage by participants: usage of knowledge in public and targetted education and advocacy work on the illness; usage of the understanding as a way to open dialogue with young people; and an intention to include information in a resource (which is currently under development) on the illness for schools. A journal article describing the knowledge exchange activities, acceptability and reported short-term knowledge usage and benefits is currently under review for publication in Health Expectations. |
| First Year Of Impact | 2021 |
| Sector | Communities and Social Services/Policy,Healthcare |
| Impact Types | Cultural Societal |
| Description | Knowledge transfer to improve sickle cell disease care for children and young people in Ghana |
| Geographic Reach | Africa |
| Policy Influence Type | Influenced training of practitioners or researchers |
| Impact | The main goal of the knowledge exchange work was to communicate and discuss research findings as a springboard for highlighting the need for more attention to be paid to fatigue in order to facilitate the development of optimal care and support reflecting the priorities of adolescents with sickle cell disease in Ghana. This goal was met based on participants' feedback immediately after the workshops and six months following the activities. Participants highly accepted the activities; they reported high satisfaction levels and demonstrated short-term usage of the knowledge and the benefits. The activities and outcomes are currently under review for publication in an open-access journal: Poku, BA. & Pinick, P. Research knowledge transfer to improve the care and support of adolescents with sickle cell disease in Ghana, Health Expectations. Submitted October 2021 for publication |
| Description | Understanding Fatigue in Children and Young People with Sickle Cell Disease to Guide the Co-Development of a Fatigue Self-Management Intervention |
| Amount | £161,219 (GBP) |
| Funding ID | NIHR202169 |
| Organisation | National Institute for Health Research |
| Sector | Public |
| Country | United Kingdom |
| Start | 09/2021 |
| End | 12/2022 |
| Description | Young migrants, chronic illness and disability: The case of African children and young people with sickle cell disease who migrate to England |
| Amount | £234,144 (GBP) |
| Funding ID | ES/X003515/1 |
| Organisation | Economic and Social Research Council |
| Sector | Public |
| Country | United Kingdom |
| Start | 03/2023 |
| End | 09/2025 |
| Description | Knowledge transfer to improve sickle cell disease care and support for children and young people in Ghana. |
| Form Of Engagement Activity | Participation in an activity, workshop or similar |
| Part Of Official Scheme? | No |
| Geographic Reach | International |
| Primary Audience | Patients, carers and/or patient groups |
| Results and Impact | Two knowledge exchange workshops were undertaken for three key stakeholder groups in Ghana: the Sickle Cell Association of Ghana, parents of children and young people with sickle cell disease and healthcare providers involved in the care and support of sickle cell disease. Participants were engaged with the research findings from my doctoral work that was based in Ghana to improve their knowledge and understanding of the significance of fatigue for children and young people with sickle cell disease in Ghana and identify culturally valuable and actionable recommendations that they could take forward. Fifty participants were engaged: 28 parents, 15 healthcare professionals and 12 charity representatives. The workshops were well-received by participants, led to immediate knowledge and understanding post-workshops, contributed new layers of understanding to the original research findings through discussions and policy/practice recommendations for the stakeholders to champion. A follow-up six months post the workshops indicated positive knowledge usage and benefit. A paper based on the knowledge exchange work is currently under second-round review in an open-access journal: Poku, BA. & Pinick, P. Research knowledge transfer to improve the care and support of adolescents with sickle cell disease in Ghana, Health Expectations. Submitted October 2021 for publication |
| Year(s) Of Engagement Activity | 2021 |