A Critical Review of Thomas, V.J., & Taylor, L.M. 2002. Contextualisation

A Critical Review of Thomas, V.J., & Taylor, L.M. 2002. Contextualisation The paper to be reviewed is a qualitative study on the psychological implications of living with Sickle Cell Disorders (SCD). SCD refer to a group of hereditary blood conditions marked by the existence of abnormal haemoglobin which causes the production of ‘sickleshaped’ red blood cells (Midence & Elander, 1994). Sickle cell, sickle cell beta thalassaemia and sickle cell anaemia are the main types of SCD (Serjeant & Serjeant, 2001), the last being the most common (Dyson, Abuateya, Atkin, Culley, Dyson & Rowley, 2009). Possible symptoms of all SCD include: anaemic episodes due to the fact that sickle blood cells are more short-lived than healthy erythrocytes; vaso-occlusive crises (VOCs) also known as pain crises, induced by build up of blood in narrow capillaries; and major organ damage and strokes caused by oxygen deprivation through impaired blood circulation (Sickle Cell Society, 2009). SCD are the most common hereditary blood conditions in the world (Burnes, Antle, Williams & Cook, 2008) with a prospective 20,000 suffers in the UK in the near future (Dyson et al, 2009). Although distribution patterns of SCD cases indicate that it has an almost global presence (Serjeant & Serjeant, 2001), research on the psychological nature of SCD has been insufficient (Edwards et al., 2005). Many argue this is due to the conceptualisation of sickle cell as a ‘black disease’, occurring most commonly in African and African-Caribbean populations, and reportedly racism has impeded advancement of research (Burnes, Antle, Williams & Cook, 2008). Oni (2009) asserts that services for SCD sufferers are sparse in comparison to services provided for other chronic or hereditary illnesses. Chronic illnesses infiltrate every aspect of an individual’s life, as they often change a person’s concept of self (Moos and Schaefer, 1984, as cited by Ogden, 2007) which in turn affects social relationships, coping strategies, perception and management of illness, and general quality of life (Taylor, 2006). Therefore, research on the psychological impact of any chronic illness on an individual, as in the current study with SCD, gives meaning to all other facets of the individual’s life. Edwards et al. (2005) argue that SCD as any other chronic illness cannot be fully understood aside from the psychosocial contributions it makes on a person’s life. The psychosocial aspects of SCD are influenced by daily experiences with symptom manifestation (Anie, Dasgupta, Ezenduka, Anarado & Emodi, 2007) and others interaction with the individual with SCD (Anie, 2005). As of yet, there is still no 100% reliable cure to SCD (Serjeant & Serjeant, 2001) and treatment consists of a two-fold therapy regime: treatment of acute symptoms, such as VOCs, strokes, anaemia; and management of SCD in its more stable state, that is in the absence of symptom manifestation (Atkin & Ahmad, 2000). Considering the lack of a complete medical solution to SCD, improving the quality of life of people living with it becomes pivotal to healthcare professionals (Jenerette & Lauderdale, 2008). Mann-Jiles and Morris (2009) cite that in comparison to other long-term illnesses, quality of life (QoL) scores for the sickle cell population are lower. They postulate that there is an increased need for QoL research in the SCD population. Anie (2005) previously argued that improvement of QoL in SCD is mainly dependent on positive psychological adjustment to SCD in general, as medical complications of SCD cannot fully explain perceived QoL (Anie et al., 2002). A study focusing on the lived experiences of individuals with SCD would give valuable insight into their psychosocial functioning and its influence on quality of life, as is the case with the current study. There is an extensive body of research on factors associated with psychological adjustment
to and psychosocial aspects and QoL domains of SCD (Anie, Steptoe & Bevan 2002; Anie et al. 2007; Casey, Brown, & Bakeman, 2000; Helps, Fuggle, Udwin & Dick, 2003; Kell, Kliewer, Erickson & Ohene-Frempong, 1998). Burlew, Telfair, Colangelo & Wright (2000) conducted a study on the contribution of psychosocial and biomedical factors on psychological adjustment to SCD. They discovered that psychosocial aspects had a higher predictive significance than biomedical agents on effective coping with SCD. A recent study by Mann-Jiles and Morris (2009) looked at the factors linked to quality of life of adults with SCD. They determine that several factors outside an individual’s medical relationship to SCD influence QoL, examples being work, stigma, discrimination and isolation. These factors reinforce the importance of psychosocial aspects on life experiences of SCD populations. Edwards et al. (2005) argue that psycho-education, that is the teaching of effective psychological coping strategies, is beneficial to improving psychosocial functioning and in turn QoL for SCD sufferers. The researchers also grant the importance of research that quantifies the benefits of improving psychosocial functioning by indicating correlations, as they discern this type of research is necessary to encourage and enforce changes at decision-making levels to adopt policies advocating psycho-education for example. However, in 1994, Hughes and Konrad previously advocated the need for research on psychosocial experiences of SCD to provide causal findings, that is, to explain exactly what factors affect the psychosocial experience of the SCD population, how and why they do (Hughes & Konrad, 1994). They ascertained this would enable the drafting of concrete interventions which would impact health care delivery. The researchers furthermore stated there was a need to understand the contextual world of the individual with SCD. The paper at hand seeks to achieve exactly this: understanding the everyday life experiences of people with SCD by analysing what underlying factors contribute to these lived experiences. Summary In the current study, the researchers aimed to disclose the psychological and social aspects and developments in the life of individuals with SCD and examine in what way these experiences affect QoL, as defined by the WHO. They believed that the qualitative consideration of QoL in SCD would be a supplement to the comprehensive amount of quantitative research. 25 participants were recruited, all of which had sickle cell anaemia, were between 15 and 35 years of age, and had experienced at least three hospitalisations due to pain crises in the year prior to the study. Of the recruited participants, only 17 (7 male, 10 female) attended weekly non-directive focus group discussions, in which patients expressed their personal accounts of and experiences with SCD. The discussions were tape-recorded, transcribed and analysed using phenomenological methodology. Six themes were identified: growing up with SCD; education; impact of the unremitting nature of the disease; employment; effects on relationships; and hospitalization. Furthermore the researchers established in how far these themes correlated with the six spheres influencing QoL as identified by the WHO (WHOQOL): physical domain; psychological domain; level of independence; social relationships; environment; and spirituality. The theme ‘impact of the unremitting nature of the disease’ for example incorporates feelings of fear and uncertainty due to the perceived uncontrollability of SCD. This loss of control correlates with the psychological domain of WHOQOL. Furthermore, the sudden development of pain crises also associated with the theme affects an individual’s QoL by debilitating their physical body, restricting their level of independence and changing their responses to the environment. ‘Environment’, a domain of WHOQOL, includes the
assurance of sufficient financial resources, the acquisition of skills and the provision of quality health care. Long absences and lack of support as symbolic of the theme ‘education’ can however impair the fulfilment of the first two aspects of environment, and unhelpful attitudes as identified in the ‘hospitalization’ theme can work against the last. This indicates that themes identified by analysing personal accounts, can not only be projected unto more general measures of QoL, but objective indicators of QoL are also made manifest in subjective ways. The authors conclude that amongst frequent users of hospital services, SCD often diminishes QoL as it negatively influences facets of psychosocial experiences, such as growing up with SCD, education, social relationships and employment. Establishing a sense of normality is not always possible as SCD interferes with normal psychosocial developments. The authors also stress the importance of using qualitative means of inquiry to enrich the existent quantitative body of research on the relation between SCD and QoL. Evaluation As one of the very few studies of its time to qualitatively consider psychological implications of SCD and their contribution to quality of life, the article under review sought to examine what many recognized as important only recently (Atkin & Ahmad, 2001; Bodhise, Dejoie, Brandon, Simpkins & Ballas, 2004; Jenerette & Lauderdale, 2008; Mann-Jiles & Morris, 2009). This foresight is commendable and the insights gained into the lived experiences of SCD patients are invaluable. A further contribution the study reviewed makes is its attempt to ground the personal experiences of people with SCD in a general measure of QoL, by considering in how far psychosocial experiences reflect or contribute to domains of WHOQOL. This method , known as ‘theoretical selectivity’ (Schwarz-Barcott et al., 2002, as cited by Wu & Volker, 2009) makes the findings more generalizable and gives the study a heuristic value, as future research can make use of the WHOQOL measure and compare whether experiences are similar for people suffering from another type of sickle cell, or differ for those enduring less hospitalizations. The ability to theorize qualitative research findings as apparent in this study is a sign of the parsimony of findings and reflects the researchers’ expertise (Cutcliffe & Harder, 2009). Considering the theme of the ‘impact of the unremitting nature of the disease’, Burnes et al. (2008) acknowledge the psychological burden it reflects, however they argue this is a burden carried by mothers of children with SCD. That this does not appear within the current research is because it is also one of the few studies focusing on young adults accounts of their experience with SCD. The struggle for normality as discovered as an aspect of growing up with SCD has also been identified by Atkin and Ahmad (2001) in a study on coping strategies of young people with thalassaemia major or SCD. A negative critique of the researchers view on the meaning of hospitalization follows from researchers such as Anie, Steptoe and Bevan (2002) and Anie et al. (2007) and a previous study by Maxwell, Streetly and Bevan (1999), who all argue that the frequency of hospitalisation does not reflect the severity of the illness. There are implicit factors influencing hospitalisation, including personal choice and pain perception. A theme which has been deemed as pivotal in determining psychosocial experience of SCD -‘social attitudes’ – is not evident in the analysis of accounts. Maxwell et al.’s (1999) study findings on the disempowerment of SCD patients with VOCs in clinical settings; Oni’s (2009) acknowledgement of inequalities in provision of health care services for SCD patients in comparison to other chronic illness sufferers; Burnes and colleagues (2008) observation of allocation of insufficient resources towards psychological research on SCD; and Mann-Jiles and Morris’ (2009) admittance that
stigmatisation and discrimination affect QoL of SCD patients – all these findings imply that discussions about interventions in SCD should gradually become a socio-political dialogue, as social attitudes held by health care professionals, the public and policy makers can either undermine or improve QoL of people with SCD. There are several evaluative criteria concerning the collection and analysis of data within the study. Willig (2008) states that data generated in focus groups is valuable as it is often of higher ecological validity than one-to-one interviews. The fact that the focus groups were non-directive and patient-led fulfils the criteria of good qualitative research being naturalistic (Willig, 2008). However, there is little detail on the exact structure of the focus groups and the reader is left to assume what happened. Brocki and Wearden (2008) discern that the absence or non-mentioning of a topic guide applied during the interview, implies that themes must have been pre-formulated to achieve the objectives of the researcher. Applied to the current study: the researchers knew that they wanted to compare emerging themes to WHOQOL, but as the reader does not know how data generation occurred and is led to assume it was an open forum with one to him/her unknown opening question, he/she must also assume that the researchers must have pre-chosen themes and cherry-picked statements which support these. This assumption is especially reasonable in the absence of any sample analyses which would have made the analytical process more transparent (Wertz, 2005). The researchers apply a phenomenological approach to data analysis. Phenomenology is concerned with the study of phenomena/events and their perception by man (Giorgi, 2006). It is a complex concept incorporating various philosophical, psychological and methodological dimensions (Laverty, 2003). The complete disregard of the complexity of phenomenology apparent in the lack of a working definition of phenomenology by the researchers is the principal limitation of this study. Lowes and Prowes (2001) argue that using phenomenological methods without reference to philosophical underpinnings decreases the quality of the research (Mackey, 2005). Reflexivity, a primary component of any phenomenological approach (Willig, 2008), refers to the researcher’s contemplation on his/her contribution to participants’ experiences of phenomena (Dowling, 2005) and his/her acknowledgment that data generation, analysis and interpretation is influenced by a twofold bias of participant and researcher (Nuttall, 2006). Depending on whether the researcher takes a primarily descriptive or interpretive approach, he/she will respectively either try to completely exclude preconceptions from the research process or encourage these (Smith & Osborn, 2008). The current study shows no sign of either epistemological or personal reflexivity (Willig, 2008), meaning the researchers neither considered how the method of the study may have constructed the themes for example, nor how the researchers personal beliefs may have influenced the analytical process or findings. Lack of reflexivity in research is argued to occlude personal rationale for the study and analytical methods used (Lowes & Prowes, 2001). Although the current piece of research does not adhere to some of the criteria presented here, the analysis process is congruent with three of four steps of applying a phenomenological methodology proposed by Giorgi, one of the founding fathers of the phenomenological method in psychological research (Giorgi, 2006). Furthermore, the fact that the researchers sought expert and participant validation of the themes indicates that the themes reliably reflect what participants actually expressed (external validation) and what participants wanted to express (participant validation). In addition, the apparent lack of reflexivity may have been due to considerations of guidelines for the length of qualitative research within journals (Lowes & Prowes, 2001). Also, as the current study is descriptive in
its approach rather than interpretive, due to its aim to define the type of psychosocial experiences, rather than to understand their implicit meaning; reflexivity should have resulted in the bracketing-off of personal biases, which could have also been achieved by multiple external validations of themes and this did occur in the study. Conclusion In conclusion, the critical review of this paper has demonstrated that the paper was and still is a valuable contribution to research on quality of life in SCD. The researchers objective to apply their findings unto a given model of QoL has led to a bridging of the gap between accounts of individual experiences and comparisons to general concepts; almost transcending the boundaries of quantitative and qualitative research. The methodological weaknesses of the paper however take away from the conceptual strengths. Therefore further research should clearly define methodology used and what impact this has on the generation, analysis and interpretation of data. Furthermore, future research should focus on the contribution of social attitudes on psychosocial experience of individuals with SCD and incorporate narratives of people with all types of SCD, in different stages of life. The current study discerned that as a chronic illness, SCD has grave effects on QoL. Therefore, research must direct its focus on the effects of psycho-education on improving QoL and researchers have to learn to work closely with policy makers, health care professionals and the SCD population, to formulate effective treatment regimes to facilitate coping with SCD and improve quality of life. Abbreviation SCD – Sickle Cell Disease/Disorders
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