A qualitative study exploring the ritual-like activity and therapeutic relationship between Pilates teachers and clients with persistent low back pain.

BACKGROUND AND PURPOSE: Pilates is a commonly recommended exercise modality for the management of persistent low back pain. Whilst guidelines recommend the use of exercise for low back pain, research suggests that no one exercise is superior, creating a question over the mechanism of effect. The patient-practitioner relationship may be important in managing low back pain; however, the relationship between Pilates teachers and clients is not well understood. The purpose of this study was to identify the components of the relationship between Pilates teachers and clients with persistent low back pain, explore key influences on the relationship, and ascertain the nature of the relationship. METHOD: We conducted a qualitative, ethnographically-informed study at eight sites in the South of England, observing 24 Pilates sessions and interviewing 9 Pilates teachers and 10 clients with persistent low back pain. Fieldnotes and interview transcripts were analysed thematically. RESULTS: The findings demonstrate a complex, multi-faceted interaction that occurs during Pilates sessions, grounded within certain health perceptions, and predicated on expectations of individuality, choice and expertise. A key finding reveals the perceived importance of mastery of prescribed movements with control and precision, in which clients particularly value the authority of the teacher in a directive learning environment. CONCLUSION: We contend that the role of the Pilates teacher in this study facilitated the alleviation of clients' distress through the application of ritual-like Pilates activity. We conclude that the relationship between Pilates teachers and clients with persistent low back pain may be considered a therapeutic relationship.

Social Empathy and Associated Factors Among Nurses: An Observational Study.

Integral to holistic "big picture" nursing care is an empathy that strives for social justice. Social empathy requires more than technical skills or even interpersonal empathy or other-focus; it also requires a perspective that appreciates the impact of social determinants and seeks action to address them. This study sought to measure social empathy and potentially associated demographic, personal, and work-related factors among nurses. This cross-sectional, observational study used online survey methods to collect data from 614 registered nurses employed in a faith-based health care system in the northwestern United States. Constructs measured included social empathy, social advocacy, self-compassion, emotional exhaustion, and trust/mistrust in God. Parametric statistical tests, including multiple logistic regression, allowed analyses. Findings indicated that social empathy was high in this sample. Younger nurses, those more inclined to advocate, those more self-compassionate, those less burned out, those working part-time (in contrast only with those working overtime), and those with at least a baccalaureate degree in nursing were more socially empathic. Findings highlight further rationale for creating healthy work environments that foster self-compassion and minimize burnout.

Avoiding nocebo and other undesirable effects in chiropractic, osteopathy and physiotherapy: An invitation to reflect.

INTRODUCTION: While the placebo effect is increasingly recognised as a contributor to treatment effects in clinical practice, the nocebo and other undesirable effects are less well explored and likely underestimated. In the chiropractic, osteopathy and physiotherapy professions, some aspects of historical models of care may arguably increase the risk of nocebo effects. PURPOSE: In this masterclass article, clinicians, researchers, and educators are invited to reflect on such possibilities, in an attempt to stimulate research and raise awareness for the mitigation of such undesirable effects. IMPLICATIONS: This masterclass briefly introduces the nocebo effect and its underlying mechanisms. It then traces the historical development of chiropractic, osteopathy, and physiotherapy, arguing that there was and continues to be an excessive focus on the patient's body. Next, aspects of clinical practice, including communication, the therapeutic relationship, clinical rituals, and the wider social and economic context of practice are examined for their potential to generate nocebo and other undesirable effects. To aid reflection, a model to reflect on clinical practice and individual professions through the 'prism' of nocebo and other undesirable effects is introduced and illustrated. Finally, steps are proposed for how researchers, educators, and practitioners can maximise positive and minimise negative clinical context.

Burnout, Self-Efficacy, and Resilience in Haitian Nurses: A Cross-Sectional Study.

Purpose of Study: Though nursing burnout is a global problem, research on nurse burnout in Haiti is scarce. In a context of multiple personal, social, and environmental challenges, this study assessed burnout and associated factors among Haitian nurses. Design of Study: A multi-site cross-sectional study. Methods: A survey in French and Haitian Creole was conducted in five Haitian hospitals using forward and back translated scales measuring burnout (emotional exhaustion [EE], depersonalization [DP], personal accomplishment [PA]), self-efficacy, nursing work environment, resilience, and demographics. Findings: Haitian nurses (N = 179) self-reported moderate EE (M = 21, SD = 11.18), low DP (Mdn = 2.0, range = 29), and high personal accomplishment (Mdn = 41.0, range = 33). General self-efficacy (M = 32.31, SD = 4.27) and resilience (M = 26.68, SD = 5.86) were high. Dissatisfaction with salary, autonomy, and staffing were evident. Conclusions: It is noteworthy that burnout was lower than expected given the scarce resource, difficult socio-politico-economic environment. High levels of self-efficacy and resilience likely mitigated a higher level of burnout. Adaptation enables these nurses to manage their critical conditions and practice holistic nursing, which may inspire hope among nurses in similar contexts.

Use of Complementary and Alternative Medicine for Prostate Cancer among African Americans, African Immigrants and Caribbean Immigrants.

Black men have the highest rate of prostate cancer (PCa) morbidity and mortality in the US, and often receive delayed and/or poorer-quality treatment. This inequity has led many to turn to complementary and alternative medicine/therapies (CAM). However, little is known about the use of these therapies within the Black community. The purpose of this study was to describe types of CAM therapies used, and the reasons behind their use for overall health and PCa treatment and prevention among three groups of Black males, namely African Americans, Caribbean Immigrants and African Immigrants. This study used a mixed-methods design with a quantitative phase (n = 575) followed by a qualitative phase (n = 61) with participants recruited from various parts of the country. Results revealed differences among subgroups in CAM use for overall health and PCa, as well as differences in the types of CAM therapies used and differences in the reasons behind their use. The findings of this study reveal a prevalence of CAM use for overall health and PCa within three different groups of Black men and identifies the specific CAM used. There were significant differences in the types of CAM used by each subgroup for both overall health and PCa. This study also shows that there is value in looking at Black subgroups distinctively, for their rates of CAM use and reasons for use, are distinctly different.

Integration of Health Information Technology and Promotion of Personhood in Family-Centered Dementia Care: Intervention Trial.

Alzheimer's disease and related dementias (ADRD) often result in communication deficits that can lead to negative health outcomes as well as complications for caregiving and clinical care. Although augmentative and alternative communication (AAC) devices have demonstrated efficacy in assisting persons living with dementia (PLWD) in communicating, few devices offer customization for the person's care preferences (e.g., clothing, food, activities) or are designed for integration into clinical care and caregiving. To address this issue, our research team is developing a novel electronic AAC prototype with a touchscreen to promote communication and personhood for PLWD. The current article describes the development of this technology and uses the Standard Protocol Items: Recommendations for Interventional Trials (SPIRIT) 2013 Statement to describe the clinical trial that is planned to test its efficacy. TARGETS: PLWD and their care partners. INTERVENTION DESCRIPTION: Use of AAC Plus to promote communication and personhood for PLWD. MECHANISMS OF ACTION: AAC Plus will provide PLWD and care partners a way to communicate PLWD's daily preferences and provide clinical data for health care providers. OUTCOMES: Determine whether enhanced communication of daily preferences of PLWD will improve quality of life of PLWD and their care partners. TRIAL REGISTRATION: ClinicalTrials.gov Identifier: NCT04571502 (Date of registration October 1, 2020). [Research in Gerontological Nursing, 14(5), 225-234.].

Direct and mediated effects of treatment context on low back pain outcome: a prospective cohort study.

OBJECTIVES: Contextual components of treatment previously associated with patient outcomes include the environment, therapeutic relationship and expectancies. Questions remain about which components are most important, how they influence outcomes and comparative effects across treatment approaches. We aimed to identify significant and strong contextual predictors of patient outcomes, test for psychological mediators and compare effects across three treatment approaches. DESIGN: Prospective cohort study with patient-reported and practitioner-reported questionnaire data (online or paper) collected at first consultation, 2 weeks and 3 months. SETTING: Physiotherapy, osteopathy and acupuncture clinics throughout the UK. PARTICIPANTS: 166 practitioners (65 physiotherapists, 46 osteopaths, 55 acupuncturists) were recruited via their professional organisations. Practitioners recruited 960 adult patients seeking treatment for low back pain (LBP). PRIMARY AND SECONDARY OUTCOMES: The primary outcome was back-related disability. Secondary outcomes were pain and well-being. Contextual components measured were: therapeutic alliance; patient satisfaction with appointment systems, access, facilities; patients' treatment beliefs including outcome expectancies; practitioners' attitudes to LBP and practitioners' patient-specific outcome expectancies. The hypothesised mediators measured were: patient self-efficacy for pain management; patient perceptions of LBP and psychosocial distress. RESULTS: After controlling for baseline and potential confounders, statistically significant predictors of reduced back-related disability were: all three dimensions of stronger therapeutic alliance (goal, task and bond); higher patient satisfaction with appointment systems; reduced patient-perceived treatment credibility and increased practitioner-rated outcome expectancies. Therapeutic alliance over task (ηp2=0.10, 95% CI 0.07 to 0.14) and practitioner-rated outcome expectancies (ηp2=0.08, 95% CI 0.05 to 0.11) demonstrated the largest effect sizes. Patients' self-efficacy, LBP perceptions and psychosocial distress partially mediated these relationships. There were no interactions with treatment approach. CONCLUSIONS: Enhancing contextual components in musculoskeletal healthcare could improve patient outcomes. Interventions should focus on helping practitioners and patients forge effective therapeutic alliances with strong affective bonds and agreement on treatment goals and how to achieve them.

Why managing sciatica is difficult: patients' experiences of an NHS sciatica pathway. A qualitative, interpretative study.

OBJECTIVES: Amid a political agenda for integrated, high-value care, the UK is implementing its Low Back and Radicular Pain Pathway. To align care with need, it is imperative to understand the patients' perspective. The purpose of this study was, therefore, to explore how people experience being managed for sciatica within an National Health Service (NHS) pathway. DESIGN: Qualitative interpretative study. SETTING: Musculoskeletal Service in an NHS, Primary Care Trust, UK. PARTICIPANTS: The sample comprised 14 people aged ≥18 years with a clinical presentation of sciatica, who were currently under the care of a specialist physiotherapist (the specialist spinal triage practitioner), had undergone investigations (MRI) and received the results within the past 6 weeks. People were excluded if they had previously undergone spinal surgery or if the suspected cause of symptoms was cauda equina syndrome or sinister pathology. Participants were sampled purposively for variation in age and gender. Data were collected using individual semi-structured interviews (duration: 38-117 min; median: 82.6 min), which were audio-recorded and transcribed verbatim. Data were analysed thematically. RESULTS: A series of problems with the local pathway (insufficient transparency and information; clinician-led decisions; standardised management; restricted access to specialist care; and a lack of collaboration between services) made it difficult for patients to access the management they perceived necessary. Patients were therefore required to be independent and proactive or have agency. This was, however, difficult to achieve (due to the impact of sciatica and because patients lacked the necessary skills, funds and support) and together with the pathway issues, this negated patients' capability to manage sciatica. CONCLUSIONS: This novel paper explores how patients experience the process of being managed within a sciatica pathway. While highlighting the need to align with recommended best practice, it shows the need to be more person-centred and to support and empower patient agency. TRIAL REGISTRATION NUMBER: ClinicalTrials.gov reference (UOS-2307-CR); Pre-results.

Self-Reported Parenting Stress and Cortisol Awakening Response Following Mindfulness-Based Stress Reduction Intervention for Parents of Children With Developmental Delays: A Pilot Study.

BACKGROUND: Many parents of children with developmental delays (DDs) experience high levels of parental stress, and young children with DDs are likely to exhibit clinical levels of behavioral problems. The reciprocal relationship between the two issues makes these families vulnerable to stress-related health risks. To address this, the current study aims to investigate the effectiveness of mindfulness-based stress reduction (MBSR) at reducing parent stress, as measured by both psychological self-report and a physiological biomarker. METHOD: A pretest-posttest design with a 6-month follow-up assessment was used to establish effectiveness with analyses of within-subject effects. Parents (N = 47) of children (2.5-5 years of age) with DDs participated in a standard 8-week MBSR intervention. Measures included the Parenting Daily Hassles, a self-report measure of perceived frequency and intensity of parenting stress, and salivary samples for measurement of the cortisol awakening response (CAR), a biological marker of stress response. RESULTS: Both self-reported parenting stress and CAR decreased following MBSR for parents of children with DDs. The greatest difference in means over time was between baseline and follow-up, where changes in effect size were even stronger for biological markers than for self-report measures. CONCLUSION: The MBSR intervention reduced both perceived and physiologic stress. Health-care professionals caring for these families might consider encouraging parents to participate in MBSR as both treatment and prevention of parenting stress.

Mindfulness-Based Stress Reduction for Parents of Children with Developmental Delays: Understanding the Experiences of Latino Families.

Parents of children with developmental delays (DD) report elevated mental health difficulties compared to parents of children with typical development, which appear largely associated with child behavior problems. Latino parents of children with DD may experience heightened risk for poor mental health outcomes due additional stressors associated with minority status. Mindfulness-Based Stress Reduction (MBSR) appears to be efficacious for reducing parenting stress and improving wellbeing in families of children with DD; however, studies have rarely focused on families from racial and ethnic minority backgrounds. The current study employed a mixed-methods, waitlist-control design to examine the efficacy of MBSR for improving parent and child outcomes in Latino and non-Latino families. Results indicate that MBSR is similarly efficacious for Latino and non-Latino families in improving parent mental health (parenting stress, depressive symptomatology, and life satisfaction) and reducing parent-reported child behavior problems. Qualitative analyses further highlight avenues for improving the efficacy of MBSR for Latino families by providing intervention directly in Spanish, rather than using translation services, for Spanish-speaking families. Findings reveal the efficacy of standard MSBR for Latino parents of children with DD and underscore the potential benefits of disseminating this practice to traditionally underrepresented families.

It takes two: the influence of dance partners on the perceived enjoyment and benefits during participation in partnered ballroom dance classes for people with Parkinson's.

PURPOSE: To explore the views of people with Parkinson's and their dance partners on the influence and issues surrounding dancing with an able-bodied dance partner during partnered ball room dance classes. METHODS: In depth, semi-structured interviews explored purposively selected participants' experiences and views about dance classes. Fourteen people with Parkinson's and their dance partners (six spouses, two friends/relatives, five volunteers) were interviewed within a month of completing the 10-week dance class program. Data were analyzed thematically. RESULTS: Generally, those partnered with a spouse or an experienced dancer, or when dance couples were able to develop good rapport, gained greater enjoyment and sense of achievement from dance classes in comparison to couples who did not enjoy dancing together or had clashing approaches to dance. Managing and negotiating who would "lead" in a dance was challenging for dance couples particularly among male people with Parkinson's. CONCLUSIONS: People with Parkinson's experience of the dance classes were influenced by the relationship and compatibility with their dance partner. Dance partnerships may impact on recruitment, enjoyment, outcome and continued participation in dance classes. Potential effects of partnerships should be analyzed and reported in studies evaluating the outcomes of dance classes. Implications for rehabilitation We recommend that health professionals consider involving spouses in Parkinson's dance classes as this may improve recruitment, adherence, enjoyment and overall outcome of the dance classes. If volunteers are needed, aim to recruit those who already have good dancing ability, convey a love of dancing and have the sensitivity and social skills to interact positively with the person with Parkinson's. Consider dance partnership issues when advertising and promoting dance classes. Address partnership issues through open communication and by changing partners if the dance partnership is not working well.

Dance for Parkinson's-The effects on whole body co-ordination during turning around.

OBJECTIVE: To investigate the effects of ballroom and Latin American dancing classes on turning in people with Parkinson's. DESIGN: This study employed a randomised, controlled, experimental design. SETTING: Dance classes were performed in a community dance centre in Southern England and all assessments took place a gait laboratory. PARTICIPANTS: Twenty-seven people with mild-moderate Parkinson's participated. INTERVENTION: Participants were randomly allocated to receive either 20, 1-h dancing classes over 10 weeks (n=15), or a 'usual care' control group (n=12). MAIN OUTCOME MEASURE: Twelve, 180° on-the-spot turns to the predicted/un-predicted and preferred/un-preferred direction were analysed for each participant, using 3-dimensional motion analysis before and after the intervention period, alongside clinical measures. RESULTS: Movement of the head, pelvis, and feet during turning in people with Parkinson's are affected by dancing with tighter coupling of body segments. Significant 4-way interactions between the groups, over time and turn style, with longer latency of the head (p=0.008) and greater rotation in the pelvis (p=0.036), alongside a trend of slower movement of the first (p=0.063) and second (p=0.081) foot in controls were shown, with minimal change in dancers. All interactions were affected by the type of turn. No significant differences were found in the centre of mass displacement, turn time or clinical measures. CONCLUSION: Those who danced were better able to coordinate their axial and perpendicular segments and surprisingly became more 'en bloc' in their turning behaviour, suggesting this may be a beneficial adaptation, rather than a maladaptive result of Parkinson's, as previously suggested.

Mindfulness-Based Intervention for Perinatal Grief in Rural India: Improved Mental Health at 12 Months Follow-Up.

Stillbirth is a significant global health problem that frequently results in perinatal grief with compound negative psychosocial impact. In low-resource settings with exceedingly high stillbirth rates, such as rural Chhattisgarh, India, it is vital to utilize low-cost, effective interventions. Mindfulness-based stress reduction is an evidence-based intervention utilized for a broad range of physical and mental health problems, and is adaptable to specific populations. The objective of this study was to explore the sustained effectiveness of a shortened, culturally adapted mindfulness-based intervention (MBI) designed to address complex grief after stillbirth. We used an observational, mixed-methods pre-post study design with 6-week and 12-month follow-up assessments among women with a history of stillbirth (N = 22). Analyses explored study outcomes and continued use of mindfulness skills. Pretest results showed elevated psychological symptoms and high levels of perinatal grief. General linear modeling repeated measures was used to explore 6-week and 12-month follow-up changes from baseline, controlling for significantly correlated demographic variables. Longitudinal results indicated significant reductions in perinatal grief and psychological symptoms; four of the five facets of mindfulness changed in the desired direction; and resilience scores indicated thriving. The shortened, culturally adapted, MBI pilot brought about sustained, significant reductions of perinatal grief and mental health symptoms, and participants reported use of mindfulness skills in day-to-day life. This study shows that the significant mental health needs among rural women of various castes and ethnicities in Chhattisgarh following stillbirth were successfully addressed by a promising MBI with potential scalability and sustainability.

Non-specific mechanisms in orthodox and CAM management of low back pain (MOCAM): theoretical framework and protocol for a prospective cohort study.

INTRODUCTION: Components other than the active ingredients of treatment can have substantial effects on pain and disability. Such 'non-specific' components include: the therapeutic relationship, the healthcare environment, incidental treatment characteristics, patients' beliefs and practitioners' beliefs. This study aims to: identify the most powerful non-specific treatment components for low back pain (LBP), compare their effects on patient outcomes across orthodox (physiotherapy) and complementary (osteopathy, acupuncture) therapies, test which theoretically derived mechanistic pathways explain the effects of non-specific components and identify similarities and differences between the therapies on patient-practitioner interactions. METHODS AND ANALYSIS: This research comprises a prospective questionnaire-based cohort study with a nested mixed-methods study. A minimum of 144 practitioners will be recruited from public and private sector settings (48 physiotherapists, 48 osteopaths and 48 acupuncturists). Practitioners are asked to recruit 10-30 patients each, by handing out invitation packs to adult patients presenting with a new episode of LBP. The planned multilevel analysis requires a final sample size of 690 patients to detect correlations between predictors, hypothesised mediators and the primary outcome (self-reported back-related disability on the Roland-Morris Disability Questionnaire). Practitioners and patients complete questionnaires measuring non-specific treatment components, mediators and outcomes at: baseline (time 1: after the first consultation for a new episode of LBP), during treatment (time 2: 2 weeks post-baseline) and short-term outcome (time 3: 3 months post-baseline). A randomly selected subsample of participants in the questionnaire study will be invited to take part in a nested mixed-methods study of patient-practitioner interactions. In the nested study, 63 consultations (21/therapy) will be audio-recorded and analysed quantitatively and qualitatively, to identify communication practices associated with patient outcomes. ETHICS AND DISSEMINATION: The protocol is approved by the host institution's ethics committee and the NHS Health Research Authority Research Ethics Committee. Results will be disseminated via peer-reviewed journal articles, conferences and a stakeholder workshop.

Mindfulness-based Intervention for Perinatal Grief Education and Reduction among Poor Women in Chhattisgarh, India: a Pilot Study.

INTRODUCTION: Stillbirth is a significant public health problem in low-to-middle-income countries and results in perinatal grief, often with negative psychosocial impact. In low-resource settings, such as Chhattisgarh, India, where needs are high, it is imperative to utilize low-cost, effective interventions. Mindfulness-based stress reduction (MBSR) is an empirically sound intervention that has been utilized for a broad range of physical and mental health problems, and is adaptable to specific populations. The main objective of this pilot study was to explore the feasibility and effectiveness of a shortened, culturally adapted mindfulness-based intervention to address complex grief after stillbirth. METHODS: We used an observational, pre-post-6-week post study design. The study instrument was made up of descriptive demographic questions and validated scales and was administered as a structured interview due to low literacy rates. We used a community participatory approach to culturally adapt the five-week mindfulness-based intervention and delivered it through two trained local nurses. Quantitative and qualitative data analyses explored study outcomes as well as acceptability and feasibility of the intervention. RESULTS: 29 women with a history of stillbirth enrolled, completed the pretest and began the intervention; 26 completed the five-week intervention and post-test (89.7%), and 23 completed the six-week follow-up assessment (88.5%). Pretest results included elevated psychological symptoms and high levels of perinatal grief, including the active grief, difficulty coping, and despair subscales. General linear modeling repeated measures was used to explore posttest and six-week follow up changes from baseline, controlling for significantly correlated demographic variables. These longitudinal results included significant reduction in psychological symptoms; four of the five facets of mindfulness changed in the desired direction, two significantly; as well as significant reduction in overall perinatal grief and on each of the three subscales. DISCUSSION: The shortened, culturally adapted, mindfulness-based intervention pilot study was well received and had very low attrition. We also found significant reductions of perinatal grief and mental health symptoms over time, as well as a high degree of practice of mindfulness skills by participants. This study not only sheds light on the tremendous mental health needs among rural women of various castes who have experienced stillbirth in Chhattisgarh, it also points to a promising effective intervention with potential to be taken to scale for wider delivery.

Recent developments in the use of online resources and mobile technologies to support mental health care.

This review describes recent developments in online and mobile mental health applications, including a discussion of patient portals to support mental health care. These technologies are rapidly evolving, often before there is systematic investigation of their effectiveness. Though there are some reviews of the effectiveness of mental health mobile apps, perhaps the more significant development is innovation in technology evaluation as well as new models of interprofessional collaboration in developing behavioural health technologies. Online mental health programs have a strong evidence base. Their role in population health strategies needs further exploration, including the most effective use of limited clinical staff resources. Patient portals and personal health records serve to enhance mental health treatment also, though concerns specific to mental health must be addressed to support broader adoption of portals. Provider concerns about sharing psychiatric notes with patients hinder support for portals. Health information exchange for mental health information requires thoughtful consent management strategies so mental health patients can benefit. Finally, the broad array of health information technologies may overwhelm patients. User-friendly, well-designed, patient-centred health information technology homes may integrate these functions to promote a holistic approach to care plans and overall wellness. Such technology homes have special security needs and require providers and patients to be well informed about how best to use these technologies to support behavioural health interventions.

Feasibility of Mindfulness-based Stress Reduction Intervention for Parents of Children with Developmental Delays.

Mindfulness-based stress reduction (MBSR) interventions are popular as a treatment strategy for myriad diagnoses in various settings, and may be beneficial for parents of children with developmental delays (DD). However, prior research suggests extreme levels of stress and extraordinary demands on time among these parents, making the feasibility of effectively implementing MBSR with this population questionable. This study examined the feasibility of administering standard MBSR to a diverse community-based sample of parents of young children with DD. The potential impact of MBSR interventions includes improvement in parents' mental health, and collateral benefits for the family environment, including improved child behavior. Nurses may have an integral role in interdisciplinary teams providing MBSR.

Mindfulness-based Intervention for Perinatal Grief after Stillbirth in Rural India.

We explored the concept of using a Mindfulness-based intervention to reduce perinatal grief among Indian women. Data were collected using mixed methods to explore concept acceptability, receptivity, modality, and feasibility of the intervention. The intervention was piloted and evaluated with measures of perinatal grief, psychosocial wellbeing, religious coping, perceived social provision of support, and mindfulness. The intervention was well received and effective in teaching skills to help women deal with high levels of grief and subsequent mental health challenges. To overcome attendance barriers modification is necessary. Partnership with a local nursing school is critical to enhance sustainability of the intervention.

Management of a South African family with retinitis pigmentosa-should potential therapy influence translational research protocols?

Mutation analysis of retinal candidate genes is performed as part of an ongoing research to identify the causative genetic defect in South African families with retinal degenerative disorders (RDDs). A translational research protocol has been established whereby probands are counseled and given their molecular genetic results to take back to other family members, who can then request individual diagnostic testing. A Thr17Met mutation of the rhodopsin gene was identified in a Caucasian South African family with autosomal dominant retinitis pigmentosa. Patients with this mutation appear to benefit from treatment using oral vitamin A supplementation. This family has been informed that a molecular diagnosis is available; however, one individual has refused testing and none of the younger generation has shown interest in receiving molecular results or genetic counseling. Adapting the established protocol for the translation of RDD research results and contacting mutation positive individuals may be justifiable in light of the potential benefit of therapy.