Enhancing quality of life among epilepsy surgery patients: interlinking multiple social and relational determinants

Patti Shih, Emilie Francis-Auton, Armin Nikpour, Geoffrey Herkes, Andrew Bleasel, Frances Rapport

Research output: Contribution to journalArticleResearchpeer-review

Abstract

Background: Achieving seizure control through resective brain surgery is a major predictor of improved quality of life (QOL) among people with refractory (drug-resistant) epilepsy. Nevertheless, QOL is a comprehensive and dynamic construct, consisting of broad dimensions such as physical health, psychosocial well-being, level of independence, social relationships, and beyond. This study highlights the interlinkage and complementarity of these diverse dimensions, and how in practice, patients, clinicians, and others in a social support system can actively promote QOL among surgery patients. Method: Twenty-one qualitative in-depth interviews with patients with refractory epilepsy who are either undergoing presurgical assessment or postsurgery follow-up were conducted, to consider their perspective on QOL in relation to their experience of illness and surgical treatment. Data were thematically analyzed, resulting in three key thematic findings. Results: (1) A myriad of QOL dimensions are highly interrelated and interdependent with mutual ‘spin-off’ effects: Uncontrolled seizures impacted beyond physical and cognitive health, disrupting important social identities such as being successful parents, spouses, and career professionals. The desire for good clinical outcomes from surgery was justified against the need to mitigate these social and personal concerns. (2) In postsurgery care, there were complementary effects of clinical interventions and social factors on patients' QOL. Psychosocial well-being was supported by a combination of improved physical health, self-confidence, psychological interventions, and social support from employers and educators who were sensitive to patients' specialized needs. (3) Engaging in education, employment, and government services influenced not only socioeconomic well-being, but also a sense of social inclusion. Advocacy made on behalf of patients by clinicians and family members has helped to better manage patients' eligibility for social services provision. Conclusion: Quality of life is achieved through a comprehensive and interactive social process, and not simply an outcome measure of clinical treatment. The responses and interactions of many others within the patients' life and treatment process, including family members, clinicians, and social service workers, can culminate to influence QOL, highlighting the importance of a relational and social determinants perspective in patient care.

LanguageEnglish
Article number106721
Pages1-8
Number of pages8
JournalEpilepsy and Behavior
Volume102
DOIs
Publication statusAccepted/In press - 13 Nov 2019

Fingerprint

Epilepsy
Quality of Life
Social Work
Social Support
Health
Seizures
Social Identification
Spouses
Patient Care
Therapeutics
Parents
Outcome Assessment (Health Care)
Interviews
Psychology
Education
Brain

Keywords

  • Epilepsy surgery
  • Qualitative research
  • Quality of life
  • Social determinants of health

Cite this

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title = "Enhancing quality of life among epilepsy surgery patients: interlinking multiple social and relational determinants",
abstract = "Background: Achieving seizure control through resective brain surgery is a major predictor of improved quality of life (QOL) among people with refractory (drug-resistant) epilepsy. Nevertheless, QOL is a comprehensive and dynamic construct, consisting of broad dimensions such as physical health, psychosocial well-being, level of independence, social relationships, and beyond. This study highlights the interlinkage and complementarity of these diverse dimensions, and how in practice, patients, clinicians, and others in a social support system can actively promote QOL among surgery patients. Method: Twenty-one qualitative in-depth interviews with patients with refractory epilepsy who are either undergoing presurgical assessment or postsurgery follow-up were conducted, to consider their perspective on QOL in relation to their experience of illness and surgical treatment. Data were thematically analyzed, resulting in three key thematic findings. Results: (1) A myriad of QOL dimensions are highly interrelated and interdependent with mutual ‘spin-off’ effects: Uncontrolled seizures impacted beyond physical and cognitive health, disrupting important social identities such as being successful parents, spouses, and career professionals. The desire for good clinical outcomes from surgery was justified against the need to mitigate these social and personal concerns. (2) In postsurgery care, there were complementary effects of clinical interventions and social factors on patients' QOL. Psychosocial well-being was supported by a combination of improved physical health, self-confidence, psychological interventions, and social support from employers and educators who were sensitive to patients' specialized needs. (3) Engaging in education, employment, and government services influenced not only socioeconomic well-being, but also a sense of social inclusion. Advocacy made on behalf of patients by clinicians and family members has helped to better manage patients' eligibility for social services provision. Conclusion: Quality of life is achieved through a comprehensive and interactive social process, and not simply an outcome measure of clinical treatment. The responses and interactions of many others within the patients' life and treatment process, including family members, clinicians, and social service workers, can culminate to influence QOL, highlighting the importance of a relational and social determinants perspective in patient care.",
keywords = "Epilepsy surgery, Qualitative research, Quality of life, Social determinants of health",
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Enhancing quality of life among epilepsy surgery patients : interlinking multiple social and relational determinants. / Shih, Patti; Francis-Auton, Emilie; Nikpour, Armin; Herkes, Geoffrey ; Bleasel, Andrew; Rapport, Frances.

In: Epilepsy and Behavior, Vol. 102, 106721, 01.01.2020, p. 1-8.

Research output: Contribution to journalArticleResearchpeer-review

TY - JOUR

T1 - Enhancing quality of life among epilepsy surgery patients

T2 - Epilepsy and Behavior

AU - Shih, Patti

AU - Francis-Auton, Emilie

AU - Nikpour, Armin

AU - Herkes, Geoffrey

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AU - Rapport, Frances

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N2 - Background: Achieving seizure control through resective brain surgery is a major predictor of improved quality of life (QOL) among people with refractory (drug-resistant) epilepsy. Nevertheless, QOL is a comprehensive and dynamic construct, consisting of broad dimensions such as physical health, psychosocial well-being, level of independence, social relationships, and beyond. This study highlights the interlinkage and complementarity of these diverse dimensions, and how in practice, patients, clinicians, and others in a social support system can actively promote QOL among surgery patients. Method: Twenty-one qualitative in-depth interviews with patients with refractory epilepsy who are either undergoing presurgical assessment or postsurgery follow-up were conducted, to consider their perspective on QOL in relation to their experience of illness and surgical treatment. Data were thematically analyzed, resulting in three key thematic findings. Results: (1) A myriad of QOL dimensions are highly interrelated and interdependent with mutual ‘spin-off’ effects: Uncontrolled seizures impacted beyond physical and cognitive health, disrupting important social identities such as being successful parents, spouses, and career professionals. The desire for good clinical outcomes from surgery was justified against the need to mitigate these social and personal concerns. (2) In postsurgery care, there were complementary effects of clinical interventions and social factors on patients' QOL. Psychosocial well-being was supported by a combination of improved physical health, self-confidence, psychological interventions, and social support from employers and educators who were sensitive to patients' specialized needs. (3) Engaging in education, employment, and government services influenced not only socioeconomic well-being, but also a sense of social inclusion. Advocacy made on behalf of patients by clinicians and family members has helped to better manage patients' eligibility for social services provision. Conclusion: Quality of life is achieved through a comprehensive and interactive social process, and not simply an outcome measure of clinical treatment. The responses and interactions of many others within the patients' life and treatment process, including family members, clinicians, and social service workers, can culminate to influence QOL, highlighting the importance of a relational and social determinants perspective in patient care.

AB - Background: Achieving seizure control through resective brain surgery is a major predictor of improved quality of life (QOL) among people with refractory (drug-resistant) epilepsy. Nevertheless, QOL is a comprehensive and dynamic construct, consisting of broad dimensions such as physical health, psychosocial well-being, level of independence, social relationships, and beyond. This study highlights the interlinkage and complementarity of these diverse dimensions, and how in practice, patients, clinicians, and others in a social support system can actively promote QOL among surgery patients. Method: Twenty-one qualitative in-depth interviews with patients with refractory epilepsy who are either undergoing presurgical assessment or postsurgery follow-up were conducted, to consider their perspective on QOL in relation to their experience of illness and surgical treatment. Data were thematically analyzed, resulting in three key thematic findings. Results: (1) A myriad of QOL dimensions are highly interrelated and interdependent with mutual ‘spin-off’ effects: Uncontrolled seizures impacted beyond physical and cognitive health, disrupting important social identities such as being successful parents, spouses, and career professionals. The desire for good clinical outcomes from surgery was justified against the need to mitigate these social and personal concerns. (2) In postsurgery care, there were complementary effects of clinical interventions and social factors on patients' QOL. Psychosocial well-being was supported by a combination of improved physical health, self-confidence, psychological interventions, and social support from employers and educators who were sensitive to patients' specialized needs. (3) Engaging in education, employment, and government services influenced not only socioeconomic well-being, but also a sense of social inclusion. Advocacy made on behalf of patients by clinicians and family members has helped to better manage patients' eligibility for social services provision. Conclusion: Quality of life is achieved through a comprehensive and interactive social process, and not simply an outcome measure of clinical treatment. The responses and interactions of many others within the patients' life and treatment process, including family members, clinicians, and social service workers, can culminate to influence QOL, highlighting the importance of a relational and social determinants perspective in patient care.

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