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American and Australian family experiences while receiving a diagnosis or having treatment for idiopathic toe walking: a qualitative study.

ABSTRACT: OBJECTIVE:To understand parent journeys while navigating diagnosis, assessment or treatment of their children with idiopathic toe walking (ITW). DESIGN:Mixed methods qualitative study: analyses of survey data from the measure of processes of care-20 (MPOC-20) and semistructured interviews were analysed with an interpretative phenomenological analysis approach. Trustworthiness of data was achieved through member checking, researcher triangulation, reflexivity and transferability and comparison with the MPOC-20 results. SETTING:USA and Australia. PARTICIPANTS:Parents of children diagnosed with ITW who had seen more than one health professional during their care and lived in Australia or the USA. RESULTS:Ten parents of children aged between 3 and 13 years and diagnosed with ITW participated. Parents described complex themes relating to their journeys. The themes relating to their journeys were: (1) riding the rollercoaster of diagnosis; (2) navigating the treatment options and (3) supporting parents in the journey. Each theme was supported by parent quotes about their experiences. Challenges were not localised to one country, in spite of vastly different healthcare systems. CONCLUSIONS:These findings create opportunities for an international approach to education, treatment recommendations and outcome measures to improve patient and parent experiences. Health professionals should consider the impact on parents in navigating between health professionals when provided with a diagnosis which can have variable outcomes and varied treatment options.

SUBMITTER: Williams C

PROVIDER: S-EPMC7470490 | biostudies-literature | 2020 Sep

REPOSITORIES: biostudies-literature

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American and Australian family experiences while receiving a diagnosis or having treatment for idiopathic toe walking: a qualitative study.

Williams Cylie C Robson Kristy K Pacey Verity V Gray Kelly K

BMJ open 20200902 9

<h4>Objective</h4>To understand parent journeys while navigating diagnosis, assessment or treatment of their children with idiopathic toe walking (ITW).<h4>Design</h4>Mixed methods qualitative study: analyses of survey data from the measure of processes of care-20 (MPOC-20) and semistructured interviews were analysed with an interpretative phenomenological analysis approach. Trustworthiness of data was achieved through member checking, researcher triangulation, reflexivity and transferability an ...[more]

PMID: 32878753

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Project description:During typical human walking, the metatarsophalangeal joints undergo extension/flexion, which we term toe joint articulation. This toe joint articulation impacts locomotor performance, as evidenced by prior studies on prostheses, footwear, sports and humanoid robots. However, a knowledge gap exists in our understanding of how individual toe properties (e.g. shape, joint stiffness) affect bipedal locomotion. To address this gap, we designed and built a pair of adjustable foot prostheses that enabled us to independently vary different toe properties, across a broad range of physiological and non-physiological values. We then characterized the effects of varying toe joint stiffness across a range of different ankle joint stiffness conditions, and the effects of varying toe shape on walking biomechanics. Ten able-bodied individuals walked on a treadmill with prostheses mounted bilaterally underneath simulator boots (which immobilized their biological ankles). We collected motion capture and ground reaction force data, then computed joint kinematics and kinetics, and center-of-mass (COM) power and work. To our surprise, we found that varying toe joint stiffness affected COM Push-off dynamics during walking as much as, or in some cases even more than, varying ankle joint stiffness. Increasing toe joint stiffness increased COM Push-off work by up to 48% (6 J), and prosthetic anklefoot Push-off work by up to 181% (12 J). In contrast, large changes in toe shape had little effect on gait. This study brings attention to the toes, an aspect of prosthetic and robotic foot design that is often overlooked or overshadowed by design of the ankle. Optimizing toe joint stiffness in assistive and robotic devices (e.g. prostheses, exoskeletons, robot feet) may provide a complementary means of enhancing Push-off or other aspects of locomotor performance, in conjunction with the more conventional approach of augmenting ankle dynamics. Future studies are needed to isolate the effects of additional toe properties (e.g. toe length).

Project description:STUDY QUESTION:What are the benefits and harms of receiving a polycystic ovary syndrome (PCOS) diagnosis in a community sample of women, including impact on psychosocial wellbeing, lifestyle choices and behaviour? SUMMARY ANSWER:Although some women benefit considerably from the diagnosis, such as through increased awareness and reassurance, women with minimal symptoms may experience more harm than benefit, including long-lasting anxiety and altered life plans. WHAT IS KNOWN ALREADY:Disease labels can validate symptoms and play a vital role in understanding and coping with illness; however, they can also cause harm by evoking illness schemas about severity and permanence. Regarding PCOS, the diagnostic criteria have expanded over time to include women with milder phenotypes (such as those without signs of androgen excess). This has occurred despite limited investigation of the benefits and harms of the diagnosis and has increased the number of women diagnosed. STUDY DESIGN SIZE DURATION:Semi-structured interviews were conducted face-to-face or by telephone with 26 participants from April-July 2018 to explore women's experiences with the diagnosis, including the benefits and harms of receiving the diagnosis and the impact on their life. PARTICIPANTS/MATERIALS SETTING METHODS:In total, 26 women in the community self-reporting a diagnosis of PCOS (reporting mild to severe symptoms) made by a medical doctor, aged 18-45 years and living in Australia were recruited through social media. Data were analysed thematically using Framework analysis. MAIN RESULTS AND THE ROLE OF CHANCE:The study identified a range of both positive and negative effects of a PCOS diagnosis in the immediate, short and long-term, which were influenced by symptom severity, expectations and experience. For women with previously unexplained and bothersome symptoms, it was a relief to receive a diagnosis, and this resulted in an increased understanding about the importance of a healthy lifestyle. By contrast, women with milder symptoms often reported feeling shocked and overwhelmed by the diagnosis, consequently experiencing anxiety about the associated long-term risks. The majority of women, regardless of symptom severity, experienced prolonged worry and anxiety about infertility, resulting for some in risk taking with contraception, unintended pregnancies, pressure to conceive early or altered life plans. With time, many women developed positive coping strategies and perceived the diagnosis to be valuable, including those who felt they had experienced minimal benefit or even harm. LIMITATIONS REASONS FOR CAUTION:PCOS diagnosis was self-reported and the sample was highly educated. WIDER IMPLICATIONS OF THE FINDINGS:Fear of infertility was salient for many women, underscoring the need for accurate information, counselling and reassurance of fertility potential. Given the risk of significant consequences, health professionals should use a tailored approach to PCOS diagnosis to increase the benefits of appropriate and timely diagnosis for women affected by significant symptoms, while reducing the harms of unnecessarily labelling healthy women for whom the benefits of a diagnosis are small. STUDY FUNDING/COMPETING INTERESTS:The study was funded by the University of Sydney Lifespan Research Network and an NHMRC Program Grant (APP1113532). B.W.M. reports consultancy for ObsEva, Merck, Merck KGaA and Guerbet. No further competing interests exist. TRIAL REGISTRATION NUMBER:N/A.

Dataset Information

American and Australian family experiences while receiving a diagnosis or having treatment for idiopathic toe walking: a qualitative study.

Publications

American and Australian family experiences while receiving a diagnosis or having treatment for idiopathic toe walking: a qualitative study.

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