Primary Carers Research Articles

Siblings caring for siblings with Intellectual Disabilities: Naming and negotiating emotional tensions

Extended longevity among adults with Intellectual Disabilities (ID) and increasing rates of diagnosis of Autism Spectrum Disorders (ASD) mean that parents are unlikely to remain primary carers throughout the lifecourse of adults with ID and ASD. In the context of decreased funding for disability services and policy moves toward de-congregated living, non-disabled (ND) siblings of people with ID/ASD are increasingly likely to be drawn into support and care roles for their siblings. Drawing on literature on moral emotions and the ethics of care, and on narratives collected from 25 ND siblings in Ireland in 2015/6, this paper explores the emotional dynamics entwined in the care and support roles ND siblings engage in. Findings indicate that relationships forged in childhood underpinned the moral ethic to care exhibited by many participants and that their caregiving was experienced as moral practice and emotional engagement, shaped by and constitutive of biography and moral identity. When making care choices, siblings undertook evaluative judgement of their own behaviours, which was informed by perceptions about obligations to care and about what constitutes good care. Decisions about care had emotional resonance, with guilt, other-oriented empathy and righteous-anger emerging as the key emotions in the narratives. Dilemmas between autonomy and relatedness caused siblings to grapple with feelings of resentment and guilt, and many struggled to exercise self-compassion in the face of perceived moral failings. Others experienced conflict characterised by a struggle to reconcile competing care and nurturing expectations within their intimate relationships. Through ongoing self-evaluation of their care behaviours siblings’ moral identities were continually reconstituted. It is imperative that service providers and professionals understand and acknowledge such moral and emotional dynamics when working with people with ID/ASD and their families.

It’s the ‘group’ that matters: Dramatherapy working with a group of parents and their children who have profound and multiple learning difficulties

This article focuses on the practicalities, playful interventions and value of facilitating a family dramatherapy group at a Special Needs primary school. The group, comprised of four children with profound and multiple learning disabilities (PMLD) and their four primary carers, is co-facilitated by the author, a qualified dramatherapist, and a teaching member of staff. As the majority of children travel to and from school on a specially provided bus, there are few opportunities for their parents to meet one another. The dramatherapy group provides the parents with the opportunity to speak about the practical and medical aspects prevalent in their family worlds. It also offers all the participants something different: a ‘secure base’ which encourages individuals to take creative risks, attune, and reflect back feelings present within the group as part of a contained and confidential experience. Their unique relationships are witnessed, valued and developed through the therapeutic mediums of drama and movement. The article explores the theory related to the practice, and evidences, promotes and evaluates the rationale for family work with this client group.

Factors associated with high psychological distress in primary carers of people with disability.

The 2015 national 'Survey of Disability, Ageing and Carers in Australia' was used to derive a nationally representative sample and estimate weighted prevalence rates of high psychological distress (Kessler scores ≥22) in primary carers of people with disability. Risk factors were evaluated using weighted logistic regression models with lasso techniques. Approximately 27% of carers had high psychological distress. Nearly half of the study population reported changes in their health and wellbeing. A delay in general practitioner (GP) visits was common and associated with >2-fold increase in risk of high psychological distress. The findings suggest targets for early diagnosis and intervention, and adequate referrals from GPs to meet the health needs of carers.

Relationship quality and sense of coherence in dementia: Results of a European cohort study.

Quality of life of people with dementia and their family carers is strongly influenced by interpersonal issues and personal resources. In this context, relationship quality (RQ) and sense of coherence (SOC) potentially protect and promote health. We aimed to identify what influences RQ in dyads of people with dementia and their carers and to examine differences in their perspectives. Cross-sectional data were used from the Actifcare cohort study of 451 community-dwelling people with dementia and their primary carers in eight European countries. Comprehensive assessments included the Positive Affect Index (RQ) and the Orientation to Life Questionnaire (SOC). Regression analyses revealed that RQ as perceived by people with dementia was associated with carer education, stress, and spouse caregiving. RQ as perceived by carers was associated with carer stress, depression, being a spouse, social support, reported neuropsychiatric symptoms of dementia, and carer SOC. Neuropsychiatric symptoms and carer stress contributed to discrepancies in RQ ratings within the dyad. The only factor associated with both individual RQ ratings and discrepancies was carer stress (negative feelings subscore). No significant differences in the overall perception of RQ were evident between spouses and adult children carers, but RQ determinants differed between the two. In this European sample, carer SOC was associated with carer-reported RQ. RQ determinants differed according to the perspective considered (person with dementia or carer) and carer subgroup. A deeper understanding of RQ and its determinants will help to tailor interventions that address these distinct perspectives and potentially improve dementia outcomes.

Vaccination Policies and State Building in Post-war Angola

The article explores how public health policies may be used by the state to (re)gain its legitimacy. The author examines this through the example of the use of vaccination policies in Angola, a Southern African country torn apart by thirty years of civil war. In particular, the author looks at how the Angolan government has managed to regain control of the country, understood as both a territory and a population, and focuses on the construction of the Angolan nation and the key role of women in this tactic. Vaccination policies have been used with four non-medical purposes: to reconquer the territory, to frame the nursing workforce, to shape motherhood, and, through the use of statistics, to reinforce and integrate the Angolan health system into the global one. Women as the primary carers of children and as health workers are instrumental to the Angolan state's strategy for winning back the territory and the population.

Behaviour and adaptive functioning in children and young people with fetal alcohol spectrum disorders: a UK study

PurposeThe purpose of this paper is to explore the profiles of behaviours and adaptive functioning in the UK children and young people with fetal alcohol spectrum disorders.Design/methodology/approachData of 106 participants registered from 2005 to 2015 were extracted from a clinic database. In total, 99 individuals with confirmed prenatal alcohol exposure (PAE), aged from 5 to 25 years, were analysed using scaled scores of the Vineland Adaptive Behavior Scales-Second Edition (VABS-II), and the Developmental Behaviour Checklist-Primary Carer Version (DBC-P) and Teacher Version (DBC-T). Differences due to age, gender, IQ and family structure (adopted/living with birth parents) were also explored.FindingsThe mean composite adaptive behaviour score on the VABS-II was classified as “low” at 68.2 (SD=8.5), with the socialisation domain being the most impaired. Significantly lower VABS-II composite scores were found in individuals with lower IQ’s, older ages and in males. Disruptive behaviours were the most commonly observed on the DBCs, whereas primary carers scored significantly higher than teachers across all subscales. IQ, age and gender were not associated with the total percentile scores of both DBCs. Adoption made no differences compared to living with birth parents.Research limitations/implicationsFuture studies would replicate these findings in a larger sample size including individuals without PAE and those living with birth parents.Originality/valueThis study is the first UK report that examines this issue.

The influence of attachment style and relationship quality on quality of life and psychological distress in carers of people with epileptic and nonepileptic seizures

BackgroundSeizure disorders affect not only the individual living with seizures, but also those caring for them. Carer–patient relationships may be influenced by, and have an influence on, some aspects of living with seizure disorders — with potentially different interactions seen in epilepsy and psychogenic nonepileptic seizures (PNES). ObjectivesWe studied the influence of patient and carer attachment style and relationship quality on carer wellbeing and psychological distress, and explored whether these associations differ between carers for people with epilepsy and for those with PNES. MethodsConsecutive adult patients with epilepsy (N = 66) and PNES (N = 16) and their primary informal carers completed questionnaires about relationship quality, attachment style, and psychopathological symptom burden. We used correlation analysis to identify associations between relationship quality, attachment style, and carer depression, anxiety, and wellbeing; and to explore differences in these associations between carers for people with epilepsy and for those with PNES. ResultsOverall, 25.3% of carers for people with epilepsy or PNES had scores above the clinical cutoff for depression and 39.6% for anxiety; significantly more carers for people with PNES reported clinically significant depression (47.1% vs. 20.0%), but there was no difference in anxiety rates likely to be of clinical relevance. Correlations differed significantly between carers for people with epilepsy and for those with PNES in terms of patient quality of life and carer anxiety (rE = −0.577, rPNES = −0.025); seizure severity and carer depression (rE = 0.248, rPNES = −0.333) and mental wellbeing (rE = −0.356, rPNES = 0.264); patient depression and carer anxiety (rE = 0.387, rPNES = −0.266); and patient anxious attachment and carer anxiety (rE = 0.382, rPNES = 0.155). SignificanceClinically evident levels of psychological distress are prevalent among carers for people with epilepsy and PNES. Clinical and relationship variables affect carer quality of life differently depending on whether care is provided for individuals with epilepsy or PNES.

Did We Forget Something? Fathering Supports and Programs in Prisons in Victoria, Australia.

This article draws from data gathered for an Australian Research Council-funded study conducted in Victoria and New South Wales between 2011 and 2015, which examined how dependent children are responded to when their primary carer is imprisoned. In particular, this article specifically addresses a gap in knowledge by examining the current state of fathering programs in prison in Victoria. To do so, the views of 39 primary carer fathers incarcerated in Victoria are analysed. We argue that there is a distinct lack of support for fathers in prison, acting as a barrier towards maintaining father-child relationships. Findings indicate that 79% of the fathers in this study were never offered any parenting support services or programs. By clearly highlighting the state of fathering programs in prisons in Victoria, this article offers suggestions as to how best to facilitate the connection between incarcerated fathers and their children.

A Population-Based Study of the Behavioral and Emotional Adjustment of Older Siblings of Children with and without Intellectual Disability

This is the first study on the behavioral and emotional adjustment of siblings of children with intellectual disabilities (ID) to use a population-based sample, from the third wave of the Millennium Cohort Study (MCS); a UK longitudinal birth cohort study. We examined differences between nearest-in-age older siblings (age 5–15) of MCS children (likely mainly with mild to moderate ID) identified with ID (n = 257 siblings) or not (n = 7246 siblings). The Strengths and Difficulties Questionnaire (SDQ) measured all children’s adjustment. For SDQ total problems, 13.9% of siblings of children with ID and 8.9% of siblings of children without had elevated scores (OR 1.65; 95% CI 1.04, 2.62; p = 0.031). Similar group differences were found for SDQ peer and conduct problems. In logistic regression models, variables consistently associated with older sibling adjustment were: adjustment of the MCS cohort child, older sibling being male, family socio-economic position, primary carer psychological distress, and being from a single parent household. The ID grouping variable was no longer associated with adjustment for all SDQ domains, except siblings of children with ID were less likely to be identified as hyperactive (OR 0.30; 95% CI 0.10, 0.87; p = 0.027). Some older siblings of children with ID may be at additional risk for behavioral and emotional problems. Group differences were related mainly to social and family contextual factors. Future longitudinal research should address developmental pathways by which children with ID may affect sibling adjustment.

Making Space for Community Critical Methodology: Stories from the Australian Context.

Our collective account considers the ways community critical methodologies can inform academic endeavors. Methodology is understood to be the theorizing of methods that produce and legitimate knowledge claims. For us, community critical approaches incorporate poststructural and other forms of critical theory in the questioning of taken for granted assumptions. This forms a valuable foundation for community praxis as it focuses not just on social issues outside, but on an examination within; on the institution of psychology itself. We find "examining within" a vital process for our research, teaching, and community engagement. Above all it is important to ask whose interests are served by the construction and presentation of knowledge in particular ways. We present three pieces of practice which engaged with critical methodologies. The first examines collaborative research methodologies developed with young people in rural Australia who are primary carers for a family member. The second examines tensions involved in trying to employ critical methodologies in multi-stakeholder work between community organizations, communities, and researchers. The third examines opportunities and barriers when employing critical methodologies in learning and teaching with undergraduate students. We reflect upon the intersecting threads of commonality and difference between them and consider the implications for practice.

Assessment of Psycho-Education of Carers Questionnaire: APEC-U" translation and cross cultural adaptation of an Urdu Version.

Background and Objective:Psycho-education of carers is a part of good mental health practice. Our objective was to translate and validate the English questionnaire “Assessment of Psycho-Education of Carers” (APEC) into Urdu (APEC-U), for use in Pakistan.Methods:Following development and validation of APEC, it was translated into Urdu after consultation with experts and translators. After pretesting, one hundred and twenty bilingual male 67(55.8%) and female 53(44.2%) primary carers, who could understand both Urdu and English, and were carers for more than three months, were asked to fill in the self reporting Urdu questionnaire at the Fatima Memorial Hospital Psychiatry Out-Patient Department. The data were collected over a period of three months from September, 2018 to November, 2018.Main outcome measures:Responses were analyzed for internal consistency, reliability, Intraclass correlation coefficients and kappa statistics.Results:APEC-U was understandable and capable of assessing psycho-education in Urdu. High internal consistency was demonstrated on the full scale as 0.859. Degree of agreement (<0.001) between the Urdu and the originally developed English version was evaluated by Cohen’s Kappa, and a high degree of agreement was demonstrated.Conclusion:The Urdu questionnaire can adequately assess psycho-education of carers in psychiatric settings.

A national study of the clinical management of HIV-positive women in Australia: what are the successes and where are the gaps?

This study invited clinicians providing care to women living with HIV to complete an anonymous survey containing questions related to four key areas: HIV (including diagnosis, treatment and virological outcomes), reproductive health (including sexual activity, contraception, pregnancy and outcomes) and linkage and retention in care. In total, 484 surveys were received, with responses from all states and territories. Most women living with HIV in Australia are on treatment (>90%) and virologically suppressed (>90% have a viral load <50 copies mL-1). Almost 75% of women have had at least one switch in treatment (with toxicity almost as common as simplification as the indication). Treatment interruption is also relatively common, but is more likely the longer a woman has been diagnosed, if she is on benefits (P = 0.007) and is the primary carer of children without a partner (P = 0.001). In Australia, women living with HIV are a diverse heterogeneous group, with over 70 different countries of birth and almost half speaking a language other than English at home. Mental health diagnosis was the most common co-morbid condition identified. A total of 21% of women were post-menopausal, with 42% reporting symptoms to their healthcare provider, but only 17% were receiving treatment for symptoms attributed to menopause. As well as strategies to support women vulnerable to treatment interruption, important areas for future investment in research and clinical care include co-morbid mental health and menopause symptoms and treatment.

A manual-based intervention for carers of people with dementia and sleep disturbances: an acceptability and feasibility RCT.

It has been estimated that between 25% and 40% of people living with dementia suffer from sleep disturbances, and there are currently no known effective treatments. Sleep disturbances may be the direct result of dementia or due to other comorbidities, such as pain and limited mobility. If carers' sleep is also disturbed, carers too can become tired and stressed, and this sometimes results in the breakdown of care in the home. To design an evidence-based manualised non-pharmacological therapy for sleep disturbances and test it for feasibility and acceptability. A single-blind, randomised, parallel-group feasibility trial, with participants randomised 2 : 1 to intervention or treatment as usual (TAU). Five memory services in two London NHS trusts and Join Dementia Research (JDR). The study recruited people with dementia and sleep disturbances (who scored ≥ 4 on at least one question on the Sleep Disorders Inventory) and their primary family carers. All participants were given an Actiwatch (CamNtech Ltd, Cambridge, UK) to wear to record their sleep patterns for 2 weeks before randomisation. The intervention group received Dementia RElAted Manual for Sleep; STrAtegies for RelaTives (DREAMS START). This was designed as a six-session, manual-based intervention for carers of people with dementia, delivered by trained and clinically supervised psychology graduates, based on evidence about managing sleep disturbance in people with dementia. It uses the structure of a previous manual-based treatment, STrAtegies for RelaTives (START). Family carers were consulted about structure, content and design. Sessions were interactive, and each involved techniques, tasks to practise between sessions, relaxation and a recapitulation on the previous session. The sessions covered understanding sleep and dementia, making a plan (incorporating information from Actiwatch read-outs and a light box to increase light), daytime activity and routine, difficult night-time behaviours, taking care of your own (carer's) sleep and using the strategies in the future. Carers kept their own manual, light box and relaxation recordings post intervention. A statistician created an electronic randomisation list, stratified by site, using random permuted blocks. Those assessing the outcome were blinded to allocation; participants were not blinded. Outcomes were assessed at 3 months. (1) Feasibility, defined as the percentage of eligible people who consented to the study recruitment, with an expected value of 50% [95% confidence interval (CI) 41% to 59%]. (2) Acceptability, defined as the percentage of intervention group participants attending ≥ 4 intervention sessions, with an expected value of 75% (95% CI 59% to 87%). The predetermined criterion for progression to the main trial was acceptability of ≥ 70%. Of 95 eligible patients referred, 63 (66%, 95% CI 56% to 76%) consented between 4 August 2016 and 24 March 2017: 61 from memory clinics and two from JDR. Of these, 62 participants (65%, 95% CI 55% to 75%) were randomised: 42 to the intervention arm and 20 to the TAU arm. Thirty-seven out of 42 participants (88%, 95% CI 75% to 96%) adhered to the intervention. The results show that the randomised controlled trial is feasible and that the intervention is acceptable. A higher than expected proportion of eligible patients referred consented to the study and adhered to the intervention. Participants were not blinded and were recruited only in London. The results of this trial indicate that a future efficacy trial is warranted. Current Controlled Trials ISCTRN36983298. This project was funded by the NIHR Health Technology Assessment programme and will be published in full in Health Technology Assessment; Vol. 22, No. 71. See the NIHR Journals Library website for further project information. Funding was also provided by Camden and Islington NHS Foundation Trust and Barnet, Enfield and Haringey Mental Health NHS Trust to pay for excess treatment costs from therapist training and supervision and intervention delivery.

Retirement Outcomes for Female Primary Carers in Australia: A Literature Review

ABSTRACT Due to an ageing population, encouraging self-funded retirement has been a key goal of Australian government policy for the last three decades. However, the current model of superannuation—funded primarily by the Superannuation Guarantee (SG)—leaves significant segments of the Australian population at a disadvantage. These segments include groups of individuals who do not participate in the paid workforce due to their performance of non-paid work. This research paper examines the disadvantage experienced by female primary carers in Australia under the current model of superannuation. The body of literature on superannuation has identified that a significant proportion of working age women take time out of the workforce to provide care and receive a minimal amount of assistance from the government and that this has a detrimental effect on their retirement outcomes. However, this paper identifies a gap in the existing literature as it does not consider the financial consequences in retirement for women who must care for their parents. In particular, this paper identifies the disadvantage experienced by those women who simultaneously, or sequentially, ‘sandwich’ caring for their parents with raising children.

Breaking the link between disability and child and whanau poverty

In New Zealand, disabled children are more likely to live in a oneparent household than are non-disabled children. The primary carers of disabled children have a higher unemployment rate than oneparent households in general. As a result, households with disabled children are significantly more likely to experience income poverty. This is not the case in the United Kingdom, where households with disabled children tend not to be at greater risk of income poverty. A key factor in preventing a greater risk of income poverty is the higher disability-related allowances in the United Kingdom: the median payment rate is almost three times higher than the New Zealand equivalents. There is a clear case for increasing the payment rate of the New Zealand disability-related allowances. There is also a clear case for an overhaul of support for households with disabled children to better enable carers/parents to work and to provide more equitable and effective support.

The mediating role of sleep in the relationship between Indigenous status and body mass index in Australian school-aged children.

Associations between sleep duration and obesity and between obesity and chronic illness are established. Current rates of obesity for all Australian people are rising. Recent reports indicate that high body mass index (BMI) is a leading contributor to overall burden of disease for Indigenous Australians. Understanding the factors that contribute to higher rates of obesity in Indigenous people is critical to developing effective interventions for reducing morbidity and premature mortality in this population. To explore the effect of sleep duration on the relationship between Indigenous status and BMI in Australian children. 716 non-Indigenous and 186 Indigenous children aged 5-12 years in the Australian Health Survey 2011-2013. Primary carers were interviewed regarding children's sleep times; BMI was derived from measurement. Analysis of covariance revealed that regardless of a number of demographic and socio-economic status markers, sleep duration and Indigenous status were independent predictors of BMI. However when both predictors were considered together, only sleep duration remained predictive of BMI. Sleep duration plays an important mediating role in the relationship between Indigenous status and BMI in this Australian sample. Modification of sleep duration for Indigenous children may lead to longer-term positive health outcomes.

Interchangeable parents? The roles and identities of primary and equal carer fathers of young children

Against the context of enduring gender inequalities in early years parental care, this article examines the experiences of UK fathers who had taken on primary or equal care responsibility for children aged three or under. Informed by qualitative interviews with 24 such fathers, the article explores a discourse of parental interchangeability that pervaded their accounts before outlining the ways that, in practice, most caregiving tasks did tend to be allocated to them or their partners primarily on the basis of factors other than gender. The men’s comfort in presenting themselves and their partners as interchangeable equivalents, along with the range of caregiving approaches they were taking on, suggests that they had begun to move beyond clearly differentiated motherly or fatherly roles. The study goes on, however, to show that certain emotional, organisational and social aspects of parenting sometimes continued to be centred on mothers. In explaining the endurance of these areas of maternal responsibility within otherwise interchangeable partnerships, mutually reinforcing sets of maternal pressures and paternal barriers are outlined.

Protocol for the IDEAL-2 longitudinal study: following the experiences of people with dementia and their primary carers to understand what contributes to living well with dementia and enhances active life

BackgroundThere is a major need for longitudinal research examining the experiences of people with dementia and their primary carers, as relatively little is known about how the factors associated with capability to ‘live well’ vary over time. The main aim of the IDEAL-2 study is to investigate how and why, over time, people with dementia and their primary carers might vary in their capability to live well with dementia, whilst exploring both their use of health and care services and their unmet needs.MethodsIDEAL-2 will build on the Improving the experience of Dementia and Enhancing Active Life (IDEAL) cohort of 1547 people (who, at recruitment between July 2014 and July 2016, had mild-to-moderate dementia), and their 1283 primary carers in Great Britain. The existing cohort will be enriched with additional participants with mild-to-moderate dementia (and their primary carers where available and willing) from the following groups: people with rarer forms of dementia, and/or those who are ≥90 years or < 65 years of age at time of recruitment. We will assess the primary outcome, capability to live well with dementia, and the factors influencing it using questionnaires at yearly intervals for 3 years. Additionally, we will seek to link the cohort data with administrative data to obtain information about health service use. Some participants will be invited for in-depth face-to-face interviews. The cohort study will be supplemented by linked research focusing on: the co-production of new measures of living well; including the perspectives of people with advanced dementia living in residential care settings; including people with dementia from black, Asian, and minority ethnic groups; and understanding the experience of people living with undiagnosed dementia.DiscussionIDEAL-2 will provide evidence about the key indicators of, and factors associated with, living well over the course of dementia and how these differ for particular subgroups. It will tell us which combinations of services and support are most beneficial and cost-effective. Moreover, the IDEAL-2 study will gather evidence from under-researched groups of people with dementia, who are likely to have their own distinct perceptions of living well.

Adopting a participatory methodology and post‐structural epistemology: Reflections on a research project with young people

AbstractThis paper discusses the methodological processes of a qualitative PhD research project with young people aged between 12 and 17 years who are the primary carer for a family member with physical or mental health problems. The field work was conducted over 2 years in rural Australia and involved one‐on‐one discussions with young carers in their family homes. The research was grounded in post‐structural epistemology that questioned existing literature and challenged the assumptions of childhood on which it is based. Consequently, it sought to pursue a different approach to young carer research, one that adopted a participatory methodology that positioned the young people as co‐researchers. Young people were involved in the design and conduct of the research and the analysis process. This paper critiques the research space, reflecting on what was made possible and what was limited or not fully realised. The paper discusses the tensions between post‐structural theory and participatory methodology that reveal limitations to collaboration between adult researchers and young people.

Acceptability to patients, carers and clinicians of an mHealth platform for the management of Parkinson\u2019s disease (PD_Manager): study protocol for a pilot randomised controlled trial

BackgroundParkinson’s disease is a degenerative neurological condition causing multiple motor and non-motor symptoms that have a serious adverse effect on quality of life. Management is problematic due to the variable and fluctuating nature of symptoms, often hourly and daily. The PD_Manager mHealth platform aims to provide a continuous feed of data on symptoms to improve clinical understanding of the status of any individual patient and inform care planning. The objectives of this trial are to (1) assess patient (and family carer) perspectives of PD_Manager regarding comfort, acceptability and ease of use; (2) assess clinician views about the utility of the data generated by PD_Manager for clinical decision making and the acceptability of the system in clinical practice.Methods/designThis trial is an unblinded, parallel, two-group, randomised controlled pilot study. A total of 200 persons with Parkinson’s disease (Hoehn and Yahr stage 3, experiencing motor fluctuations at least 2 h per day), with primary family carers, in three countries (110 Rome, 50 Venice, Italy; 20 each in Ioannina, Greece and Surrey, England) will be recruited. Following informed consent, baseline information will be gathered, including the following: age, gender, education, attitudes to technology (patient and carer); time since Parkinson’s diagnosis, symptom status and comorbidities (patient only). Randomisation will assign participants (1:1 in each country), to PD_Manager vs control, stratifying by age (1 ≤ 70 : 1 > 70) and gender (60% M: 40% F). The PD_Manager system captures continuous data on motor symptoms, sleep, activity, speech quality and emotional state using wearable devices (wristband, insoles) and a smartphone (with apps) for storing and transmitting the information. Control group participants will be asked to keep a symptom diary covering the same elements as PD_Manager records. After a minimum of two weeks, each participant will attend a consultation with a specialist doctor for review of the data gathered (by either means), and changes to management will be initiated as indicated. Patients, carers and clinicians will be asked for feedback on the acceptability and utility of the data collection methods. The PD_Manager intervention, compared to a symptom diary, will be evaluated in a cost-consequences framework.DiscussionInformation gathered will inform further development of the PD_Manager system and a larger effectiveness trial.Trial registrationISRCTN Registry, ISRCTN17396879. Registered on 15 March 2017.