An informational support programme within the context of health psychology and its impact on aspects of psychological functioning of parents of children with cystic fybrosis

Marshall, Jerome (2006-04)

Thesis (MA) -- University of Stellenbosch, 2006.

Thesis

ENGLISH ABSTRACT: This thesis focuses on the emergence of the psychologist in health psychology and the application of psychological skills in a multidisciplinary context, with particular reference to cystic fibrosis. Modem health care provision is being influenced by the consequences of improved medical treatment as well as a move away from the model of medical dominance. The concept of parental empowerment (Melnyk, Feinstein, Moldenhouer, & Small, 2001) is being promoted in an age of biomedical reductionism (Campbell, 1994). With pressure to innovate in a climate of cost-containment, health care is taking on new forms of service delivery, with the psychologist experiencing greater acceptance in general hospital environments but, at the same time, needing to adapt to an emerging psychosocial model (Jasnoski & Schwartz, 1985) of medical treatment. The aim of this study is twofold. It firstly contextualises the role of the psychologist in a developing health psychology and medical environment. It then examines if a particular, informational support programme for parents of children with cystic fibrosis may be successful in achieving its objectives of empowering parents and reducing at least some of their distress. The shortcomings of psychological involvement alongside general medicine, as well as the historical structural barriers inherent in the dominance of the medical model (Parsons, 1970; Karabus 1994) is discussed. Attention is also drawn to the role of collaborative training (Gallo & Coyne, 2001; Kainz, 2002; Waters, 2001) as a facilitating force in the promotion of greater multidisciplinary co-operation. In the context of a serious illness such as cystic fibrosis, the disturbances in normal family life is noted. Since the usual patterns of parent-child attachment (Bowlby, 1969) are affected by an anticipated death of the child before the parent, the concept of ~hronic sorrow (Olshansky, 1962) is also mentioned. Consequently, in this strained domestic environment, difficulties in measuring parental functioning are discussed. A pilot study, in the form of a needs analysis on a small group of parents, precedes the main research, directed at a group of parents of pre-school children who had been diagnosed with cystic fibrosis. In the main research, an informational support package is provided to parents and aspects of their psychological functioning is measured on the General Health Questionnaire (Goldberg, 1978), Beck Depression Inventory (Beck & Steer, 1987), StateTrait Anxiety Inventory (Spielberger, Gorsuch, Lushene, Vagg, & Jacobs, 1970) and Brief Symptom Inventory (Derogatis, 1993). Bivariate analysis, multivariate analysis and nonparametric comparisons were made to determine the effect of the informational support programme on aspects of the psychological functioning of parents. The results were mixed, with parents in the experimental group showing lower levels of depression, but not anxiety, after use of the support programme. While depression and anxiety ordinarily coexist (Lader, 1994; Stavrakaki & Vargo, 1986), it is speculated that the different nature of anxiety experienced by parents, entrusted with a demanding daily medical treatment regime, may account for these results. Positive results on the General Health Questionnaire, a measure which assesses stress responses in the health domain, are also reported. In an environment where the United Kingdom Department of Health (2001) is promoting the concept of the expert patient, knowledge and empowerment may not be enough. Placing the research in this study in context, it is argued that innovation and cost-containment will contribute towards both opportunities and stresses for the psychologist working in a biopsychosocial model incorporating multidisciplinary teams. Shaw and Baker (2004) ask "Expert patient - dream or nightmare?" while Strawbridge (2002) remarks on the pitfalls of what she calls, the emergence of 'McDonaldization or fast food therapy' in psychology, in which we find ourselves doing 'McJobs'. This study positions itself in the midst of the new concepts and demands of multidisciplinary service delivery and finds that its objectives are compromised by pressures of time, money and health care policy.

AFRIKAANSE OPSOMMING: Hierdie tesis fokus op die betreding van die sielkundige op die terrein van die gesondheidsielkunde en die toepassing van sielkundige vaardighede in 'n multidissiplinere konteks met spesifieke verwysing na sistiese vibrose. Modeme voorsiening vir gesondheidsorg word be'invloed deur die gevolge van verbeterde mediese behandeling sowel as 'n wegbreek van die model van mediese dominansie. Die konsep van ouerlike bemagtiging (Melnyk, Feinstein, Moldenhauer, & Small, 2001) word aanbeveel in 'n era van biomediese reduksionisme (Campbell, 1994). Die druk om innoverend te wees in 'n klimaat van koste-inperking, dryf gesondheidsorg tot nuwe vorms van dienslewering sodat sielkundiges al hoe meer aanvaar word in die algemene hospitaalomgewing, maar terselfdertyd moet daar by 'n groeiende psigososiale model (Jasnoski & Schwartz, 1985) ten opsigte van mediese behandeling aangepas word. Die mikpunt van hierdie studie is tweeledig. Dit kontekstualiseer eerstens die rol van die sielkundige in 'n ontwikkelende gesondheidsielkunde en mediese omgewing. Dit ondersoek dan die sukses al dan nie van 'n spesifieke inligting-ondersteuningsprogram wat die ouers van kinders met sistiese vibrose wil bemagtig of minstens hul nood gedeeltelik wil verlig. Die tekortkominge van· sielkundige betrokkenheid by die algemene mediese praktyk, sowel as die historiese struturele versperrings inherent aan die dominansie van die mediese model (Parsons, 1970; Karabus 1994 ), word bespreek. Aandag word ook geskenk aan die rol van kollaboratiewe opleiding (Gallo & Coyne, 2001; Kainz, 2002; Waters, 2001) as 'n fasiliterende krag in die bevordering van groter multidissiplinere samewerking. In die konteks van 'n emstige siekte soos sistiese fibrose, word versteuringe in 'n normale gesin bestudeer. Omdat die normale patroon van ouer-kind binding (Bowlby, 1969) be'invloed word deur die verwagte dood van 'n kind voor die van die ouer, word die konsep van kroniese smart (Olshansky, 1962) ook genoem. Gevolglik word die struikelblokke in die beoordeling van die ouerlike funksies in hierdie gespanne huishoudelike omgewing \ bespreek. \ Stellenbosch University https://scholar.sun.ac.za vi 'n Loodsstudie in die vorm van 'n behoefte-analise op 'n klein groep ouers gaan die hoofnavorsing vooraf en is gerig op 'n groep ouers van voorskoolse kinders wat met sistiese vibrose gediagnoseer is. In die hoof-navorsing word die ouers van 'n inligtingsondersteunings-pak.ket voorsien en aspekte van hul sielkundige funksionering word gemeet op die Algemene Gesondheidsvraelys (Goldberg, 1978), Beck Depression Inventory (Beck & Steer, 1987), State-Trait Anxiety Inventory (Spielberger, Gorsuch, Lushene, Vagg, & Jacobs, 1970) en Brief Symptom Inventory (Derogatis, 1993 ). Bivarate analise, meerveranderlike analise en nie-parametriese vergelykings word gemaak om die effek van die inligtingsondersteunings-pakket op die sielkundige funksionering van ouers te bepaal. Die resultate is gemeng, met ouers in die eksperimentele groep wat laer depressievlakke, maar nie angstigheid nie, mi afloop van die ondersteuningsprogram toon. Terwyl depressie en angs gewoonlik saam voorkom (Lader, 1994; Stavrakaki & Vargo, 1986), word bespiegel dat die verskillende vlakke van angs by ouers, verantwoordelik vir veeleisende daaglikse mediese behandeling, die oorsaak mag wees van hierdie bevinding. Positiewe uitslae op die Algemene Gesondheidsvraelys, 'n meeting wat stres-reaksies in die gesondheidsveld assesseer, word ook gerapporteer. In 'n omgewing waar die United Kingdom Department of Health (2001) die konsep van die ekspert-pasient promoveer, mag kennis en bemagtiging moontlik nie genoeg wees nie. Om die. navorsing in hierdie studie in konteks te plaas, word daar geredeneer dat innovering en koste-inperking sal hydra tot beide geleenthede en stres vir die sielkundige wat in 'n biopsigososiale model wat multidissiplinere spanne insluit, werk. Shaw en Baker (2004) vra "Expert patient - dream or nightmare?" terwyl Strawbridge (2002) op slaggate wys wat sy die verskynsel van 'McDonaldization or fast food therapy' noem; sielkunde waarin ons onsself in 'McJobs' bevind. Hierdie studie is geplaas te midde van 'n nuwe konsep met verwagtinge met betrekking tot multidissiplinere dienslewering en daar word bevind dat die doelwitte gekompromiteer word weens tydsdruk, gebrek aan geld en gesondheidsorg-beleid.

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