title: When appearances are misleading: Psychosocial consequences of facial masking in Parkinson’s disease

authors: Wootton, Adrienne

subjects: Parkinson's disease

abstract: Facial masking, the loss of expressive facial mobility in Parkinson’s disease, has the potential to impact communication, emotion perception, subjective wellbeing, and social relationship functioning. This unique symptom has been studied in the context of the healthcare and casual interactions, but little is known about how it affects people who have Parkinson’s in their family interactions. Since no cure for Parkinson’s disease presently exists, lessening the impact of the condition is an important aspect of Parkinson’s management.  However, research has been missing the voices of those who experience facial masking. This gap underscores the need to deepen our understanding of this symptom and the difficulties it may create. Thus, this research project sought to understand experiences and challenges related to facial masking in Parkinson’s, to transform those insights to targeted clinical tools, and to investigate the significance of masking in the psychosocial wellbeing of both people with Parkinson’s and their partners or family members. 
	In Study 1, in-depth personal accounts were collected of nine people who had Parkinson’s and their spouses or partners were separately interviewed about their experiences of facial masking. The study aimed to explore the common experiences and challenges related to facial masking, on an individual level and within close relationships.  Facial masking was often falsely perceived by partners as a negative affect and wrongly interpreted to mean a lack of care or interest. The loss of expression and its misinterpretation was described as a barrier to emotional connection by some participants. Loss of the ability to physically embody one’s thoughts and feelings was unsettling and distressing for both people with Parkinson’s and their partners. The interviews revealed most participants had low awareness that this symptom was an aspect of Parkinson’s, with nearly all indicating a wish for greater education and support around this symptom. 
	Study 2 involved the development and validation of two separate questionnaires that evaluated the socioemotional consequences of facial masking, one for individuals who have Parkinson’s and the other for their partner, spouse, or other family member. Questionnaire items were derived from the findings of Study 1 and a review of relevant concepts in existing literature. Psychometric properties of the questionnaires were statistically evaluated among a community sample of 80 people who had Parkinson’s and 58 of their significant others. This included an item-level assessment, an exploratory investigation of the factor structure, an evaluation of the internal and test-retest reliability, and evaluation of the construct validity of the questionnaires. Results indicated the questionnaires had good reliability and initial evidence of validity. Modified (revised) versions of the questionnaires were produced based on the psychometric findings of Study 2. 	
	Study 3 described the functioning of the participants in the psychometric study above. This study investigated the relationship between perceptions of facial masking and various psychosocial outcomes, and a study-specific measure of the impact of facial masking in Parkinson’s (developed in Study 2). Ratings of facial masking were made by self-report and significant other reports, along with healthcare professional and researcher ratings based on a videotaped conversation. Healthcare professional ratings of FM were not found to be significantly related to self/significant other ratings of facial masking severity. Overall, having more negative consequences of FM was linked to poorer psychosocial outcomes, but suggested people with Parkinson’s and their significant others may be affected in different ways. 
	Findings of this programme of research add to what is known about the consequences of facial masking in casual and healthcare provider social interactions, by examining this symptom from the perspective of those living with facial masking in Parkinson’s. The results build upon and are generally consistent with the small amount of existing evidence showing that facial masking can have a detrimental impact on subjective wellbeing. The main implication of this research is that facial masking is a topic that warrants greater clinical attention and communication. The findings also call attention to the fact that facial masking is a common feature of Parkinson’s, yet in New Zealand, people with the condition and their families seem to lack knowledge about this symptom and desire greater education and support.

text: When appearances are misleading: Psychosocial consequences of facial masking in Parkinson’s disease Facial masking, the loss of expressive facial mobility in Parkinson’s disease, has the potential to impact communication, emotion perception, subjective wellbeing, and social relationship functioning. This unique symptom has been studied in the context of the healthcare and casual interactions, but little is known about how it affects people who have Parkinson’s in their family interactions. Since no cure for Parkinson’s disease presently exists, lessening the impact of the condition is an important aspect of Parkinson’s management.  However, research has been missing the voices of those who experience facial masking. This gap underscores the need to deepen our understanding of this symptom and the difficulties it may create. Thus, this research project sought to understand experiences and challenges related to facial masking in Parkinson’s, to transform those insights to targeted clinical tools, and to investigate the significance of masking in the psychosocial wellbeing of both people with Parkinson’s and their partners or family members. 
	In Study 1, in-depth personal accounts were collected of nine people who had Parkinson’s and their spouses or partners were separately interviewed about their experiences of facial masking. The study aimed to explore the common experiences and challenges related to facial masking, on an individual level and within close relationships.  Facial masking was often falsely perceived by partners as a negative affect and wrongly interpreted to mean a lack of care or interest. The loss of expression and its misinterpretation was described as a barrier to emotional connection by some participants. Loss of the ability to physically embody one’s thoughts and feelings was unsettling and distressing for both people with Parkinson’s and their partners. The interviews revealed most participants had low awareness that this symptom was an aspect of Parkinson’s, with nearly all indicating a wish for greater education and support around this symptom. 
	Study 2 involved the development and validation of two separate questionnaires that evaluated the socioemotional consequences of facial masking, one for individuals who have Parkinson’s and the other for their partner, spouse, or other family member. Questionnaire items were derived from the findings of Study 1 and a review of relevant concepts in existing literature. Psychometric properties of the questionnaires were statistically evaluated among a community sample of 80 people who had Parkinson’s and 58 of their significant others. This included an item-level assessment, an exploratory investigation of the factor structure, an evaluation of the internal and test-retest reliability, and evaluation of the construct validity of the questionnaires. Results indicated the questionnaires had good reliability and initial evidence of validity. Modified (revised) versions of the questionnaires were produced based on the psychometric findings of Study 2. 	
	Study 3 described the functioning of the participants in the psychometric study above. This study investigated the relationship between perceptions of facial masking and various psychosocial outcomes, and a study-specific measure of the impact of facial masking in Parkinson’s (developed in Study 2). Ratings of facial masking were made by self-report and significant other reports, along with healthcare professional and researcher ratings based on a videotaped conversation. Healthcare professional ratings of FM were not found to be significantly related to self/significant other ratings of facial masking severity. Overall, having more negative consequences of FM was linked to poorer psychosocial outcomes, but suggested people with Parkinson’s and their significant others may be affected in different ways. 
	Findings of this programme of research add to what is known about the consequences of facial masking in casual and healthcare provider social interactions, by examining this symptom from the perspective of those living with facial masking in Parkinson’s. The results build upon and are generally consistent with the small amount of existing evidence showing that facial masking can have a detrimental impact on subjective wellbeing. The main implication of this research is that facial masking is a topic that warrants greater clinical attention and communication. The findings also call attention to the fact that facial masking is a common feature of Parkinson’s, yet in New Zealand, people with the condition and their families seem to lack knowledge about this symptom and desire greater education and support.

year: 2021

title: Cellulolytic properties of an extremely thermophilic anaerobe

authors: Hudson, J. Andrew

subjects: biology

abstract: An extremely thermophilic anaerobe was isolated from a New Zealand hot spring by incubating bacterial mat strands in a medium containing xylan. The Gramreaction-negative organism that was subsequently purified had a temperature optimum of 70° C and a pH optimum of 7.0. The isolate, designated strain H173, grew on a restricted range of carbon sources. In batch culture H173 could degrade Avicel completely when supplied at 5 or 10 g l⁻¹. There was an initial growth phase, during which a cellulase complex was produced and carbohydrates fermented to form acetic and lactic acids, followed by a phase where cells were not metabolising but the cellulase complex actively converted cellulose to glucose. When co-cultured with strain Rt8.B1, an ethanologenic extreme thermophile, glucose was fermented to ethanol and acetate, and no reducing sugars accumulated in the medium. In pH controlled batch culture H173 produced an increased amount of lactate and acetate but there was again a phase when reducing sugars accumulated in the medium, and these were converted to ethanol by co-culture with Rt8.B1.

text: Cellulolytic properties of an extremely thermophilic anaerobe An extremely thermophilic anaerobe was isolated from a New Zealand hot spring by incubating bacterial mat strands in a medium containing xylan. The Gramreaction-negative organism that was subsequently purified had a temperature optimum of 70° C and a pH optimum of 7.0. The isolate, designated strain H173, grew on a restricted range of carbon sources. In batch culture H173 could degrade Avicel completely when supplied at 5 or 10 g l⁻¹. There was an initial growth phase, during which a cellulase complex was produced and carbohydrates fermented to form acetic and lactic acids, followed by a phase where cells were not metabolising but the cellulase complex actively converted cellulose to glucose. When co-cultured with strain Rt8.B1, an ethanologenic extreme thermophile, glucose was fermented to ethanol and acetate, and no reducing sugars accumulated in the medium. In pH controlled batch culture H173 produced an increased amount of lactate and acetate but there was again a phase when reducing sugars accumulated in the medium, and these were converted to ethanol by co-culture with Rt8.B1.

year: 1990

title: Academic success amongst a cohort of gifted and talented Māori and Pasifika secondary school boys: Elements that have contributed to their achievement

authors: Miller, Graeme Oliver

subjects: Māori

abstract: In recent years Māori and Pasifika students have been the focus of much discussion and a significant amount of research relating to underachievement. Despite this, many Māori and Pasifika secondary school boys are achieving highly in the academic sphere within the context of mainstream boys’ state secondary schools in New Zealand. Achievement aside, evidence shows that Māori and Pasifika secondary school boys are seriously under-represented in programmes for the gifted and talented. This enquiry examines factors in relation to identifying gifted and talented students, and investigates how their abilities are forged and nurtured. The reasons for student success merit serious investigation because of how the multiple elements contributing to their achievement are likely to be applicable to others, and are a pressing concern for academic attainment in the New Zealand education system. 
 
This qualitative study examines why 30 academically successful Māori and Pasifika secondary school boys achieved highly in the mainstream education system. The boys ranged from 13 to 19 years, the youngest being in his first year at high school as a Year 9 student, and the oldest being in his second year at university. The thesis argues their academic success was due to the complex interplay of home and school environmental elements, and the boys’ intrapersonal characteristics. The study explored the boys’ and parents’ narratives to explain why students had achieved highly, and examined both the parents’ and boys’ perceptions of how well the schools had provided for their intellectual, emotional and cultural needs. Sociocultural learning theory is the main theoretical lens through which the findings are viewed. The methodology is primarily built upon narrative inquiry. The main method of data collection was by semi-structured interview, both individually and in focus groups. Supplementary methods utilised were questionnaires and observation.  
  
An issue in the research was the disparity between the cultural and ethnic background of the participants and myself as the researcher. However, an endeavour was made to mitigate this by consulting with Māori and Pasifika educators, a kaumatua (elder) and iwi (tribal) representative prior to the research commencing. In addition, models developed through this study were submitted to Māori and Pasifika educators for their comment and approval prior to being included. 
 
With its focus specifically on highly-achieving Māori and Pasifika secondary school boys, this thesis makes an original contribution to the national and international discussion about raising student achievement. It provides a platform for further research to 	address the particular concerns around the underachievement of Māori and Pasifika secondary school boys. 
 
While there are several implications arising from the research, all are linked to the need for policy makers and educators to address the issue of the underrepresentation of Māori and Pasifika students in programmes for the gifted and talented. Policies, practices and relationships need to be examined to evaluate how effectively they contribute to gifted and talented Māori and Pasifika students receiving the academic opportunities they deserve. A key part of this examination will need to include consultation with students and their whānau.

text: Academic success amongst a cohort of gifted and talented Māori and Pasifika secondary school boys: Elements that have contributed to their achievement In recent years Māori and Pasifika students have been the focus of much discussion and a significant amount of research relating to underachievement. Despite this, many Māori and Pasifika secondary school boys are achieving highly in the academic sphere within the context of mainstream boys’ state secondary schools in New Zealand. Achievement aside, evidence shows that Māori and Pasifika secondary school boys are seriously under-represented in programmes for the gifted and talented. This enquiry examines factors in relation to identifying gifted and talented students, and investigates how their abilities are forged and nurtured. The reasons for student success merit serious investigation because of how the multiple elements contributing to their achievement are likely to be applicable to others, and are a pressing concern for academic attainment in the New Zealand education system. 
 
This qualitative study examines why 30 academically successful Māori and Pasifika secondary school boys achieved highly in the mainstream education system. The boys ranged from 13 to 19 years, the youngest being in his first year at high school as a Year 9 student, and the oldest being in his second year at university. The thesis argues their academic success was due to the complex interplay of home and school environmental elements, and the boys’ intrapersonal characteristics. The study explored the boys’ and parents’ narratives to explain why students had achieved highly, and examined both the parents’ and boys’ perceptions of how well the schools had provided for their intellectual, emotional and cultural needs. Sociocultural learning theory is the main theoretical lens through which the findings are viewed. The methodology is primarily built upon narrative inquiry. The main method of data collection was by semi-structured interview, both individually and in focus groups. Supplementary methods utilised were questionnaires and observation.  
  
An issue in the research was the disparity between the cultural and ethnic background of the participants and myself as the researcher. However, an endeavour was made to mitigate this by consulting with Māori and Pasifika educators, a kaumatua (elder) and iwi (tribal) representative prior to the research commencing. In addition, models developed through this study were submitted to Māori and Pasifika educators for their comment and approval prior to being included. 
 
With its focus specifically on highly-achieving Māori and Pasifika secondary school boys, this thesis makes an original contribution to the national and international discussion about raising student achievement. It provides a platform for further research to 	address the particular concerns around the underachievement of Māori and Pasifika secondary school boys. 
 
While there are several implications arising from the research, all are linked to the need for policy makers and educators to address the issue of the underrepresentation of Māori and Pasifika students in programmes for the gifted and talented. Policies, practices and relationships need to be examined to evaluate how effectively they contribute to gifted and talented Māori and Pasifika students receiving the academic opportunities they deserve. A key part of this examination will need to include consultation with students and their whānau.

year: 2015