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A mixed methods study of physical activity and quality of life in adolescents with Turner syndrome.

ABSTRACT: Women with Turner syndrome (TS) have a high morbidity from both medical and psychological conditions with a negative impact on quality of life (QoL). Physical activity is a modifiable behavior shown to reduce risk for these chronic medical and mental health conditions and enhance QoL in other populations. Limited research suggests that adolescents and women with TS are less likely to engage in or enjoy physical activity than peers. This mixed methods study aimed to document physical activity levels in a sample of youth with TS and explore how factors unique to TS contribute to and are affected by physical activity. A cross-sectional sample of 21 girls (12-21?years) with TS and their parents (n = 21) completed standardized questionnaires to quantify habitual physical activity (3-day physical activity recall) and QoL (PROMIS) and participated in individual interviews focused on their experience with physical activity. Quantitative and qualitative results were synthesized using a phenomenological mixed methods approach. Results indicate that our sample engaged in less physical activity than peers and only 19% met recommendations for 1?hr per day of moderate-to-vigorous physical activity. Parents reported significant problems with peer relationships and psychological stress, and peer relationships scores correlated with physical activity. Reported barriers to physical activity included physical and psychosocial complications related to TS as well as unique developmental considerations specific to adolescence. Quantitative and qualitative results supported that structured fitness options embedded into routines enhanced activity levels. Results were compiled into specific recommendations for clinical care and areas of future research.

SUBMITTER: Thompson T

PROVIDER: S-EPMC7413634 | biostudies-literature | 2020 Feb

REPOSITORIES: biostudies-literature

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A mixed methods study of physical activity and quality of life in adolescents with Turner syndrome.

Thompson Talia T Zieba Brianna B Howell Susan S Karakash William W Davis Shanlee S

American journal of medical genetics. Part A 20191208 2

Women with Turner syndrome (TS) have a high morbidity from both medical and psychological conditions with a negative impact on quality of life (QoL). Physical activity is a modifiable behavior shown to reduce risk for these chronic medical and mental health conditions and enhance QoL in other populations. Limited research suggests that adolescents and women with TS are less likely to engage in or enjoy physical activity than peers. This mixed methods study aimed to document physical activity lev ...[more]

PMID: 31814298

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Project description:BackgroundThis mixed methods study explored how social media use informed physical activity and diet-related behaviours, and self-perceived Quality of Life (QoL) during COVID-19, and assessed the contextual factors that drive social media use for health-related behaviour change in diverse groups. During the COVID-19 lockdown periods there were reported changes to social media use and health behaviours, and this gave an opportunity to investigate potential relationships.MethodsAn explanatory sequential research design of two parts was used: (1) An online survey that assessed social media use in relation to physical activity levels, diet quality and QoL (n = 786; Mage 45.1 ± 19.1 (range 16-88) years; Female =69%); (2) 20 purposive focus groups (n = 69; Mage = 52.88 ± 18.45 years, Female n = 68%) to understand the contextual factors that drive social media use for health-related behaviour change. Descriptive and thematic analysis were conducted.ResultsParticipants in this study reported that social media facilitated the self-management of behaviours related to physical activity, diet and QoL, through access to information to inform workouts and dietary quality, and the opportunities for interaction with peers, family members and within social groups. Contextual factors including work, home and lifestyle arrangements, pre-existing health-related knowledge and behaviours, and the perceived value of social media for health influenced the relationship between social media use and self-reported outcomes. Social media influencers, peers/family members, and official organisations influenced the application of health-related information accessed via social media.ConclusionsThe evidence shows that participants were critical users of social media and were able to use social media to derive benefit for their health and wellbeing. Detailed guidance for those who use social media, as well as those who recommend and endorse social media content is required to maximise the potential of social media to support health behaviours. Future public health strategies and social media interventions should acknowledge diversity in contextual factors driving social media use for health behaviour change.

Project description:BackgroundAs the life expectancy of adults (aged ≥ 18 years) with Down syndrome increases for a plethora of reasons including recognition of rights, access, and technological and medical advances, there is a need to collate evidence about their quality of life.ObjectiveUsing Schalock and Verdugo's multidimensional quality of life assessment model, this systematic review aimed to identify, synthesise and integrate the quantitative and qualitative evidence on quality of life in adults with Down syndrome via self-and proxy-reporting.MethodsFive databases were systematically searched: MEDLINE, CINAHL, PsycINFO, Scopus, and Web of Science to identify relevant articles published between 1980 and 2022 along with grey literature and reference lists from relevant studies. A mixed methods systematic review was performed according to the Joanna Briggs Institute methodology using the convergent integrated approach. The review followed the Preferred Reporting Items for Systematic Reviews and Meta-Analyses guidelines.ResultsThirty-nine studies were included: 20 quantitative, 17 qualitative, and 2 mixed methods studies. The synthesised findings were grouped into the 8 core domains of quality of life: personal development, self-determination, interpersonal relations, social inclusion, rights, emotional, physical and material well-being. Of the 39 studies, 30 (76.92%) reported on emotional well-being and 10 (25.64%) on rights. Only 7 (17.94%) studies reported that adults with Down syndrome have a good quality of life centred around self-determination and interpersonal relations. Most adults with Down syndrome wanted to become more independent, have relationships, participate in the community, and exercise their human rights. Self-reported quality of life from adults with Down syndrome was rated higher than proxy reported quality of life. Discrepancies in quality of life instruments were discovered.ConclusionThis review highlighted the need for a better systematic approach to improving the quality of life in adults with Down syndrome in targeted areas. Future research is required to evaluate self-and proxy-reporting methods and culture-specific quality of life instruments that are more appropriate for adults with Down syndrome. In addition, further studies should consider including digital assistive technologies to obtain self-reported quality of life data in adults with Down syndrome.International prospective register of systematic reviews registration numberCRD42019140056.

Project description:BackgroundThis process evaluation explored the implementation and mechanisms of impact of a Park Prescription Intervention trial (PPI), including the effects of hypothesised mediators (motivation, social support, recreational physical activity [PA], park use and park PA) on trial outcomes.MethodsParticipants from the community were randomly allocated to intervention (n = 80) or control (n = 80) group. The intervention included baseline counselling, a prescription of exercise in parks, materials, three-month follow-up counselling and 26 weekly group exercise sessions in parks. Process evaluation indicators were assessed at three- and six-months. Implementation indicators included participation rates in intervention components and survey questions plus focus group discussions (FGDs) to understand which components participants valued. FGDs further assessed barriers and facilitators to intervention participation. To explore mechanisms of impact, linear regression was used to compare objectively measured PA between quantiles of group exercise participation. Structural equation modelling (SEM) explored hypothesised mediation of the significant intervention effects. Framework analysis was conducted for FGDs.ResultsParticipants were middle-aged (mean 51, SD ± 6.3 years), predominantly female (79%) and of Chinese ethnicity (81%). All intervention participants received baseline counselling, the park prescription and materials, whilst 94% received the follow-up counselling. Mean minutes of moderate-to-vigorous PA/week (95% CI) differed by group exercise participation (p = 0.018): 0% participation (n = 18) 128.3 (69.3, 187.2) minutes, > 0-35.9% participation (n = 18) 100.3 (36.9, 163.6) minutes, > 35.9-67.9% participation (n = 17) 50.5 (- 4.9, 105.9) minutes and > 67.9% participation (n = 18) 177.4 (122.0, 232.8) minutes. Park PA at three-months had significant mediating effects (95% CI) on recreational PA 26.50 (6.65, 49.37) minutes/week, park use 185.38 (45.40, 353.74) minutes/month, park PA/month 165.48 (33.14, 334.16) minutes and psychological quality of life score 1.25 (0.19, 2.69) at six-months. Prioritising time with family and preferences for unstructured activities were barriers to intervention participation. Human interaction via follow-up or group exercise were facilitators.ConclusionThis process evaluation showed park PA consistently mediated effects of the PPI, suggesting activity in parks was a mechanism of its effects. To optimise effectiveness, participants' preference for prioritising time with family through family involvement and tailoring the intervention to participants' preferences for structured or unstructured PA could be considered in future studies.Trial registrationClinicalTrials.gov NCT02615392 , 26 November 2015.

Project description:BACKGROUND:Overweight and obesity are public concerns with risk of adverse health outcomes. Health-related quality of life (HRQoL) is lower in adolescents than children in general. An increase in body mass index (BMI) is associated with a decrease in HRQoL. The purpose of this study was to measure and explore the HRQoL among adolescents with overweight or obesity who had participated in an intervention study, Young & Active, with the aim of increasing physical activity (PA), reducing BMI and promoting HRQoL. METHODS:Mixed methods, with a convergent design, were used to investigate how different methodological approaches could expand our understanding of the adolescents' HRQoL. Quantitative post-intervention data on HRQoL were collected among the 84 intervention participants, aged 13-14 years, using the KIDSCREEN 52 questionnaire. The data were compared with a Norwegian reference population of 244 individuals, and analysed using a non-parametric Mann-Whitney test. Qualitative semi-structured interviews were conducted with 21 adolescents from the intervention. A directed approach to content analysis was adopted, using the ten sub-scales from KIDSCREEN 52. RESULTS:HRQoL in the intervention sample was significantly reduced on the sub-scale of physical well-being compared to the reference population. The reference population scored significantly lower than the intervention sample on the sub-scale of parent relation and home life. No significant differences were found on the other sub-scales. The qualitative data supported the quantitative findings on the sub-scale of physical well-being, but showed that perceptions of fitness, energy level or health could vary. Regarding parent relations, the interviewees extended this to include relationships to other family members as equally important. Most of the interviewees expressed a negative view of their bodies, but not their clothing or accessories. This may explain why no statistically significant differences were found on these aspects in the results from the KIDSCREEN questionnaire. CONCLUSION:The use of the KIDSCREEN 52 instrument gave important indications about the adolescents' HRQoL and need for additional follow up. The qualitative data provided an in-depth understanding that nuanced the findings and widened our knowledge of the adolescents HRQoL. Combining methods enabled a comprehensive approach to research on HRQoL.

Project description:BackgroundGhana is experiencing an epidemiological shift in public health issues toward non-communicable diseases that are underpinned by modifiable health behaviors. Physical activity rates have decreased, especially among older adults, coinciding with urbanization and an increase in sedentary work. Community-based physical activity programs are a recommended method of increasing physical activity levels; however, none currently exist in Ghana. The aim of this exploratory study was to determine older Ghanaian adults' perceptions of physical activity and asses fit and feasibility of adapting and delivering a physical activity program for this population.MethodsThrough a concurrent exploratory mixed-methods design, data were gathered from Ghanaian older adults (N = 123) during focus groups (N = 10) conducted at one diabetes clinic and nine churches across three urban areas. Qualitative data were collected using a semi-structured script that prompted for responses related to physical activity perceptions and the fit and feasibility of physical activity program characteristics. Quantitative data were collected through a questionnaire assessing participant demographics, physical activity levels, and health rating as well as physical activity knowledge and self-efficacy.ResultsFindings indicate that older adults in Ghana have a need for and an interest in physical activity promotion. Participants had positive perceptions of being physically active, but were unaware of physical activity guidelines and how to meet them. Peer influence and health care providers' recommendations were motivating factors for physical activity participation. As for desired physical activity program characteristics, participants expressed interest in group-based activities and becoming peer leaders and preference for a church-based program.ConclusionsThe results suggest that a group-based physical activity program encouraged by health care providers and delivered at churches through a train-the-trainer model would be well received by aging adults from three urban areas of Ghana. In addition, education on physical activity types is needed, along with better dissemination and education on Ministry of Health physical activity guidelines. This exploratory work highlights preliminary support for a group- and community-based physical activity program for the aging population in Ghana. Beginning with the end in mind, these program characteristics should be considered when adopting, adapting, and implementing an intervention with this population.

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A mixed methods study of physical activity and quality of life in adolescents with Turner syndrome.

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A mixed methods study of physical activity and quality of life in adolescents with Turner syndrome.

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