title: Uptake, experiences and barriers to cervical screening for trans and non‐binary people in Aotearoa New Zealand

authors: Carroll, Rona

abstract: Background: Little is known about experiences and barriers for trans and non- binary (TGNB) people eligible for cervical screening in Aotearoa New Zealand.
Aims: To identify uptake, barriers and reasons for delaying cervical cancer screen-ing among TGNB people in Aotearoa.
Materials and Methods: The 2018 Counting Ourselves data on TGNB people as-signed female at birth aged 20– 69 years who had ever had sex, were analysed to report on experiences of those who were eligible for cervical screening (n = 318). Participants answered questions about whether they had taken part in cervical screening and reasons behind any delays in receiving the test.
Results: Trans men were more likely than non- binary participants to report that they did not require cervical screening or were unsure if they needed it. For those who had delayed cervical screening, 30% did so due to feeling worried about how they would be treated as a trans or non- binary person and 35% due to another reason. Other reasons for delay related to general and gender- related discomfort, previous traumatic experiences, anxiety or fear of the test and pain. Material bar-riers to access included cost and lack of information.
Conclusions: The current cervical screening program in Aotearoa does not con-sider the needs of TGNB people, leading to delayed and reduced uptake of cervical screening. Health providers require education on the reasons TGNB people delay or avoid cervical screening in order to provide appropriate information and affirm-ative healthcare environments. The human papillomavirus self- swab may address some of the existing barriers.

text: Uptake, experiences and barriers to cervical screening for trans and non‐binary people in Aotearoa New Zealand Background: Little is known about experiences and barriers for trans and non- binary (TGNB) people eligible for cervical screening in Aotearoa New Zealand.
Aims: To identify uptake, barriers and reasons for delaying cervical cancer screen-ing among TGNB people in Aotearoa.
Materials and Methods: The 2018 Counting Ourselves data on TGNB people as-signed female at birth aged 20– 69 years who had ever had sex, were analysed to report on experiences of those who were eligible for cervical screening (n = 318). Participants answered questions about whether they had taken part in cervical screening and reasons behind any delays in receiving the test.
Results: Trans men were more likely than non- binary participants to report that they did not require cervical screening or were unsure if they needed it. For those who had delayed cervical screening, 30% did so due to feeling worried about how they would be treated as a trans or non- binary person and 35% due to another reason. Other reasons for delay related to general and gender- related discomfort, previous traumatic experiences, anxiety or fear of the test and pain. Material bar-riers to access included cost and lack of information.
Conclusions: The current cervical screening program in Aotearoa does not con-sider the needs of TGNB people, leading to delayed and reduced uptake of cervical screening. Health providers require education on the reasons TGNB people delay or avoid cervical screening in order to provide appropriate information and affirm-ative healthcare environments. The human papillomavirus self- swab may address some of the existing barriers.

year: 2023

title: Premarital sexual behaviour among adolescents and youths in Nepal

authors: Shakya, Prabin

subjects: Premarital sex

abstract: Premarital sex (PMS) among adolescents and young people (AY) is reported to be increasing worldwide. Research to date has tended to focus on analysing the prevalence of PMS among AY, and the individual characteristics associated with PMS, rather than pursuing a more nuanced understanding of changes in the younger generations’ premarital sexual behaviour (PMSB). Recognising this gap, this study explores the dynamics of PMSB among AY aged 15-24 years in Nepal, a country undergoing major social, economic and cultural transitions, and where PMS is still heavily stigmatised. This study has two objectives: to investigate the social determinants of PMSB in Nepal and, in particular, the factors associated with marked gender differences in PMSB; and to centre the voices of AY themselves so as to better understand their perspectives and experiences.
Using a social determinants of health (SDH) approach, mixed methods are employed in a sequential fashion. It begins with statistical analysis of secondary data from a large-scale national survey—the Nepal Adolescent and Youth Survey (NAYS) conducted in 2010/11. This analysis addresses questions relating to the social determinants of PMSB and gender differentials. The qualitative component involves interviews and focus group discussions with AY and key social agents including parents and teachers. By allowing AY to narrate their perceptions of PMS from their own complex standpoints, this part of the study addresses questions relating to the importance of context and AY subjectivities.
Unsurprisingly, the NAYS analysis identified major gender differences with 23% of males reporting that they had experienced PMSB compared to just 4% of females. For both males and females, the likelihood of having PMS was most strongly associated with marital status, prior involvement in at least one ‘love affair’, having a permissive attitude towards PMS, and experience of sexual abuse. The direction of association between marital status with PMSB varied by gender. Ever-married females were 2.5 times more likely to have experienced PMS than never-married females, while never-married males were 1.5 times more likely to experience PMS than their ever-married counterparts. Unlike females, males were also more likely to have had PMS if they had got married later and undertaken some form of migration, increasing exposure time and opportunities to engage in PMS. 
The in-depth interviews and focus groups allowed for much richer insights into AY perspectives. The findings suggest that gender differentials in PMSB among AY in Nepal is largely due to three reasons: gendered norms and values in relation to PMS; gender differences in vulnerabilities to the consequences of PMS; and gender differences in the opportunity to experience PMS. All of those interviewed were either against PMS or for it – with little middle ground – and with significant differences by age and gender. The majority of the adult participants and female AY had negative attitudes towards PMS, whereas male AY attitudes were more diverse. The findings also suggest that there are three distinct contexts in which AY could experience PMS: within intimate love affairs, in transaction (i.e., with sex worker, or informal exchange of offer), and in coercive contexts. 
The use of the SDH theoretical approach in this study is somewhat novel given the dominance, in the literature, of individualistic approaches to exploring PSMB among AY. It enabled me to situate the relationships between individuals’ exposure, attitudes, and behaviours and their PMSB within the broader social context in which AY grow up, live and work. As such, this study shows that the change in PMSB among AY in Nepal is significantly influenced by changes in the social structure, increasing both opportunities and vulnerabilities (e.g., when coerced) to experience PMS. The use of a mixed methods approach also helped to surface the multidimensional realities around PMSB among AY and made visible the limitation of relying on a single method. While this study was limited in its ability to operationalise social determinants, its conceptual framework can be used to incorporate many other social determinants of PMSB at different levels, and to develop locally grounded theories that are more sensitive to local social context. 
Finally, this study suggests that the reporting of PMS, particularly among females, is likely to be understated due to the heavy social stigma that they have to navigate. Therefore, future studies should look to employ new methods of data collection that are gender sensitive, in order to get a more coherent and accurate picture of PMSB among AY in Nepal.

text: Premarital sexual behaviour among adolescents and youths in Nepal Premarital sex (PMS) among adolescents and young people (AY) is reported to be increasing worldwide. Research to date has tended to focus on analysing the prevalence of PMS among AY, and the individual characteristics associated with PMS, rather than pursuing a more nuanced understanding of changes in the younger generations’ premarital sexual behaviour (PMSB). Recognising this gap, this study explores the dynamics of PMSB among AY aged 15-24 years in Nepal, a country undergoing major social, economic and cultural transitions, and where PMS is still heavily stigmatised. This study has two objectives: to investigate the social determinants of PMSB in Nepal and, in particular, the factors associated with marked gender differences in PMSB; and to centre the voices of AY themselves so as to better understand their perspectives and experiences.
Using a social determinants of health (SDH) approach, mixed methods are employed in a sequential fashion. It begins with statistical analysis of secondary data from a large-scale national survey—the Nepal Adolescent and Youth Survey (NAYS) conducted in 2010/11. This analysis addresses questions relating to the social determinants of PMSB and gender differentials. The qualitative component involves interviews and focus group discussions with AY and key social agents including parents and teachers. By allowing AY to narrate their perceptions of PMS from their own complex standpoints, this part of the study addresses questions relating to the importance of context and AY subjectivities.
Unsurprisingly, the NAYS analysis identified major gender differences with 23% of males reporting that they had experienced PMSB compared to just 4% of females. For both males and females, the likelihood of having PMS was most strongly associated with marital status, prior involvement in at least one ‘love affair’, having a permissive attitude towards PMS, and experience of sexual abuse. The direction of association between marital status with PMSB varied by gender. Ever-married females were 2.5 times more likely to have experienced PMS than never-married females, while never-married males were 1.5 times more likely to experience PMS than their ever-married counterparts. Unlike females, males were also more likely to have had PMS if they had got married later and undertaken some form of migration, increasing exposure time and opportunities to engage in PMS. 
The in-depth interviews and focus groups allowed for much richer insights into AY perspectives. The findings suggest that gender differentials in PMSB among AY in Nepal is largely due to three reasons: gendered norms and values in relation to PMS; gender differences in vulnerabilities to the consequences of PMS; and gender differences in the opportunity to experience PMS. All of those interviewed were either against PMS or for it – with little middle ground – and with significant differences by age and gender. The majority of the adult participants and female AY had negative attitudes towards PMS, whereas male AY attitudes were more diverse. The findings also suggest that there are three distinct contexts in which AY could experience PMS: within intimate love affairs, in transaction (i.e., with sex worker, or informal exchange of offer), and in coercive contexts. 
The use of the SDH theoretical approach in this study is somewhat novel given the dominance, in the literature, of individualistic approaches to exploring PSMB among AY. It enabled me to situate the relationships between individuals’ exposure, attitudes, and behaviours and their PMSB within the broader social context in which AY grow up, live and work. As such, this study shows that the change in PMSB among AY in Nepal is significantly influenced by changes in the social structure, increasing both opportunities and vulnerabilities (e.g., when coerced) to experience PMS. The use of a mixed methods approach also helped to surface the multidimensional realities around PMSB among AY and made visible the limitation of relying on a single method. While this study was limited in its ability to operationalise social determinants, its conceptual framework can be used to incorporate many other social determinants of PMSB at different levels, and to develop locally grounded theories that are more sensitive to local social context. 
Finally, this study suggests that the reporting of PMS, particularly among females, is likely to be understated due to the heavy social stigma that they have to navigate. Therefore, future studies should look to employ new methods of data collection that are gender sensitive, in order to get a more coherent and accurate picture of PMSB among AY in Nepal.

year: 2021

title: Caregiver Health Related Quality of Life and Burden When Caring for Children with Traumatic Brain Injury

authors: Rose, Wallis

subjects: Caregiver Burden

abstract: Often family members take on the responsibility of caregiver when another family member sustains a traumatic brain injury (TBI). The caregiving role is a stressful task which may impact negatively upon caregivers’ psychological and physical health. Variables which may contribute to caregiver burden include: caregiver age, educational attainment, income, gender, ethnicity, marital status, supports, time post-injury, and child clinical variables: TBI severity, behavioural functioning and adaptive functioning. The literature varies in its reporting of which areas of health are most affected, and the degree to which sociodemographic and child variables impact upon negative health related quality of life (HRQoL) and burden. To address this the current study explored health outcomes for TBI caregivers using a battery of measures (Medical Study Short Form-36, Hospital Anxiety and Depression Scale, DSM-IV Depression Diagnostic Scale, BAKAS Caregiving Outcomes Scale); questionnaires were also used to collect sociodemographic information and information relating to supports and services used in the rehabilitation of the TBI child. The Behavioural Assessment System for Children was used to collect behavioural and adaptability information from the caregivers about the child. Assessments were carried out at baseline, 1-month, 6-months and 12-months post TBI from a sample of 94 TBI caregivers and at baseline from a sample of 43 Control caregivers.

TBI caregivers experienced poorer overall health and higher levels of depression and were less likely to report positive life changes compared to Control caregivers. Older age and higher income predicted positive life changes. In addition to this higher income predicted better physical and overall health. Ethnicity was found to predict depression with the Māori/‘other ethnicity’ group suffering higher levels of depression. Children’s dysfunctional behaviour was found to predict poorer caregiver health outcomes across several domains; these include physical health, overall health, and depression; while the child’s adaptive functioning was not found to be a predictive factor in any caregiver health domains. New Zealand European and Māori TBI caregivers experienced similar health outcomes and received similar levels of support. However, Māori experienced more positive life changes than New Zealand Europeans. Caregivers’ physical and psychological well-being was found to improve over time, these changes were the greatest between the 1-month and 12-month period.
As a high percentage of children’s TBI’s occur in the home and at school, education aimed at schools and parents to inform of the effects of TBI upon children and families will bring an awareness which may encourage families to seek medical help. In doing so will offer the opportunity to receive or seek support in the initial period post TBI in the hope of reducing the burden for caregivers and producing better health outcomes. Bringing these families into contact with medical services may also help in identifying caregivers at higher risk of poorer health outcomes. Findings of more positive life changes for Māori may suggest cultural ideology is a protective factor in caregiver burden, further investigation may be necessary to understand these cultural differences and how they impact upon the caregiving role.

text: Caregiver Health Related Quality of Life and Burden When Caring for Children with Traumatic Brain Injury Often family members take on the responsibility of caregiver when another family member sustains a traumatic brain injury (TBI). The caregiving role is a stressful task which may impact negatively upon caregivers’ psychological and physical health. Variables which may contribute to caregiver burden include: caregiver age, educational attainment, income, gender, ethnicity, marital status, supports, time post-injury, and child clinical variables: TBI severity, behavioural functioning and adaptive functioning. The literature varies in its reporting of which areas of health are most affected, and the degree to which sociodemographic and child variables impact upon negative health related quality of life (HRQoL) and burden. To address this the current study explored health outcomes for TBI caregivers using a battery of measures (Medical Study Short Form-36, Hospital Anxiety and Depression Scale, DSM-IV Depression Diagnostic Scale, BAKAS Caregiving Outcomes Scale); questionnaires were also used to collect sociodemographic information and information relating to supports and services used in the rehabilitation of the TBI child. The Behavioural Assessment System for Children was used to collect behavioural and adaptability information from the caregivers about the child. Assessments were carried out at baseline, 1-month, 6-months and 12-months post TBI from a sample of 94 TBI caregivers and at baseline from a sample of 43 Control caregivers.

TBI caregivers experienced poorer overall health and higher levels of depression and were less likely to report positive life changes compared to Control caregivers. Older age and higher income predicted positive life changes. In addition to this higher income predicted better physical and overall health. Ethnicity was found to predict depression with the Māori/‘other ethnicity’ group suffering higher levels of depression. Children’s dysfunctional behaviour was found to predict poorer caregiver health outcomes across several domains; these include physical health, overall health, and depression; while the child’s adaptive functioning was not found to be a predictive factor in any caregiver health domains. New Zealand European and Māori TBI caregivers experienced similar health outcomes and received similar levels of support. However, Māori experienced more positive life changes than New Zealand Europeans. Caregivers’ physical and psychological well-being was found to improve over time, these changes were the greatest between the 1-month and 12-month period.
As a high percentage of children’s TBI’s occur in the home and at school, education aimed at schools and parents to inform of the effects of TBI upon children and families will bring an awareness which may encourage families to seek medical help. In doing so will offer the opportunity to receive or seek support in the initial period post TBI in the hope of reducing the burden for caregivers and producing better health outcomes. Bringing these families into contact with medical services may also help in identifying caregivers at higher risk of poorer health outcomes. Findings of more positive life changes for Māori may suggest cultural ideology is a protective factor in caregiver burden, further investigation may be necessary to understand these cultural differences and how they impact upon the caregiving role.

year: 2012