Surviving a laryngectomy : the experiences of post-operative cancer patients and their families

Steyn, Beatrix Hendrina (2014-12)

Thesis (PhD)--Stellenbosch University, 2014.

Thesis

ENGLISH ABSTRACT: Post-operative laryngectomy patients face various physical, psychological and social challenges. The comprehensive effects of a total laryngectomy can have an adverse impact on the patient and his or her family. Because improved medical treatment can increase the life expectancy of cancer sufferers, psychosocial guidance is required over an extended period. Unfortunately, limited information on the coping strategies of such patients is available. The social work profession could benefit from greater insight into the strengths and coping mechanisms of post-operative cancer patients in order to guide them through their survivorship journey with insight and compassion. The researcher therefore aimed to explore and describe the experience of a patient and his/her close family while coping with the long-term challenges of a laryngectomy. The objectives were: (1) to discuss the nature of cancer survivorship, (2) to describe the medical aspects of and physical re-adjustments to a laryngectomy, (3) to discuss principles and strategies for coping and surviving a laryngectomy, (4) to describe the comprehensive psychosocial effects during the permanent survival phase and re-entry into society; (5) to explore the survivorship journey of laryngectomy patients and their families, and (6) to analyse and interpret data obtained from the study. Each of the survivorship phases as contextualised by Miller et al. (2008:369-374)* is discussed in the literature review. Both the ecological and the strengths perspective were utilised as the theoretical framework for this study. Principles of the strengths perspective focus on the inherent strengths that help patients cope with this traumatic life event, while the ecological perspective focuses on the utilisation of community resources in order to survive the laryngectomy experience. A combination of exploratory and descriptive designs was applied throughout the study to gain insight into the survival experience of post-operative laryngectomy patients and their families. The research question was: “What are patients’ and families’ experiences of surviving a laryngectomy with the assistance of internal and external resources within the family system and environment?” This question was addressed by combining the quantitative and qualitative research approaches. Forty-five post laryngectomy patients and fifteen family members, representing one-third of these patients, were included in the study through purposive sampling. The study period was from June 2012 to July 2013. The inclusion criteria required: (1) Patients from the service area of the selected hospital who received a total laryngectomy as surgical treatment for an advanced stage of cancer of the larynx or hypopharynx; (2) patients who were operated on not less than three months previously; (3) patients who had already completed their initial treatment and who were attending the follow-up clinic; and (4) patients who had successfully acquired trachea-oesophageal speech. Data obtained from the interviews were organised into themes. Four themes were identified: (1) the need for pre-operative information; (2) experience of physical adjustment; (3) coping and strengths used; and (4) experience of psychosocial effects of surgery and re-entry into society. These themes were divided into sub-themes and categories. The main outcome of the study was that both patients and families mobilise a combination of inner strengths and external resources to adapt to the inevitable physical changes resulting from a laryngectomy. It is therefore recommended that social workers dealing with survivorship cases utilise a combination of the ecological and strengths perspectives to create an environment in which patients can explore their own inner strengths, or to help them link to community resources whilst coping with their survivorship journey. Future research should focus on the long-term psychosocial survival of laryngectomy patients and their families, as it is likely that survivorship will increase in future; the implementation of survivorship programmes for health care professionals to equip them with skills to guide cancer survivors to full utilisation of their own strengths and available community resources; the role of pre- and primary school children/grandchildren in the rehabilitation of laryngectomy patients deserves further investigation.

AFRIKAANSE OPSOMMING: Laringektomie-pasiënte word ná hul operasie met verskeie liggaamlike, psigiese en sosiale uitdagings gekonfronteer. Die omvattende gevolge van ‘n totale laringektomie kan die pasiënt en sy of haar gesin nadelig affekteer. Aangesien verbeterde mediese behandeling die lewensverwagting van kankerpasiënte kan verleng, word psigososiale ondersteuning oor ‘n langer tydperk benodig. Ongelukkig bestaan daar baie min inligting oor hoe pasiënte kanker hanteer. Die maatskaplike werk beroep kan dus voordeel trek uit beter insig in die hanteringsmeganismes van post-operatiewe kankerpasiënte om hulle met insig en empatie deur hul oorlewingsreis te kan begelei. Die navorser het ten doel gehad om die ondervindings van die kankerpasiënt en sy/haar naby familie tydens hul langtermynhantering van ‘n laringektomie te ondersoek en te beskrywe. Verdere oogmerke van die studie was: (1) om die aard van kankeroorlewing te bespreek; (2) om die mediese aspekte van en liggaamlike aanpassing ná ‘n laringektomie te beskrywe; (3) om die beginsels en strategieë vir ‘n oorwinning oor ‘n laringektomie te bespreek; (4) om die omvattende psigososiale gevolge van die finale oorlewingsfase en hertoetrede tot die gemeenskap te beskrywe; (5) om die oorlewingsreis van die laringektomiepasiënt en sy/haar gesin te ondersoek; en (6) om die resultate van die studie te ontleed en te interpreteer. Elk van die oorlewingsfases soos deur Miller et al. (2008:369-374)* beskrywe, is in die literatuuroorsig bespreek. Die ekologiese en die sterkte-perspektiewe is tesame as teoretiese raamwerk vir die studie gebruik. Die beginsels van die sterkte-perspektief is op die inherente krag van pasiënte gemik, om te bepaal hoe hulle hierdie traumatiese lewensgebeurtenis hanteer, terwyl die ekologiese perspektief op hul aanwending van gemeenskapsbronne om die laringektomie te oorleef, fokus. ‘n Kombinasie van ondersoekende en beskrywende navorsings ontwerpe is deurgaans gebruik om insig in die oorlewingstryd van laringektomiepasiënte en hul gesinne te verkry. Die navorsingsvraag was: “Wat is pasiënte en hul gesinne se ervarings van oorlewing na ‘n laringektomie met die hulp van interne en eksterne hulpbronne in die gesinstruktuur en omgewing?” Kwantitatiewe en kwalitatiewe navorsingsmetodes is gekombineer om hierdie vraag te ondersoek. Vyf-en-veertig laringektomiepasiënte en vyftien gesinslede, wat verteenwoordigend van twee-derdes van die pasiënte was, is met behulp van ‘n doelbewuste steekproef by die studie betrek. Die studie is tussen Junie 2012 en Julie 2013 onderneem. Die insluitingskriteria was: Pasiënte uit die diensgebied van die spesifieke hospitaal wat 'n totale laringektomie as chirurgiese behandeling vir 'n gevorderde stadium van kanker van die larinks of hipofarinks ontvang het; (2) pasiënte wat hul operasie nie meer as drie maande vantevore ondergaan het nie, (3) pasiënte wat reeds hul aanvanklike behandeling voltooi het en wat die opvolgkliniek bywoon, (4) pasiënte wat tragea-esofageale spraak suksesvol bemeester het. Die data, wat deur middel van onderhoude ingesamel is, is in temas gegroepeer. Vier temas is geïdentifiseer: (1) die behoefte aan inligting voor die operasie; (2) ervaring van liggaamlike aanpassing; (3) die hantering van omstandighede en innerlike krag; en (4) ervaring van die psigososiale uitwerking van die operasie en hertoetrede tot die gemeenskap. Hierdie temas is verder in subtemas en kategorieë verdeel. Die belangrikste uitkoms van hierdie studie is dat beide pasiënte en gesinne ‘n kombinasie van hul innerlike krag en eksterne bronne aangewend het om ná die laringektomie by die onafwendbare liggaamlike veranderinge aan te pas. Daar word dus aanbeveel dat maatskaplike werkers wat kankeroorlewendes hanteer, van ‘n kombinasie van die ekologiese en die sterkte-perspektief gebruik maak om ‘n omgewing te skep waarin die pasiënt sy of haar eie innerlike krag kan ontgin, of om pasiënte te help om kontak met gemeenskapsbronne te maak terwyl hulle die oorlewingsreis baasraak. Toekomstige navorsing behoort te fokus op langtermyn psigososiale oorlewing van laringektomie pasiënte en familie met inagneming van die tendens dat kanker pasiënte se oorlewing toeneem; die implementering van opleidingsprogramme vir gesondheidswerkers te fokus om hulle met die nodige kennis toe te rus om kankeroorlewendes te begelei om hul volle krag en alle beskikbare gemeenskapsbronne te gebruik. Daarby verdien die rol van voorskoolse- en laerskoolkinders in die rehabilitasie van laringektomiepasiënte verdere ondersoek.

Please refer to this item in SUNScholar by using the following persistent URL: http://hdl.handle.net/10019.1/95872
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