Additional Contact Information
Email: p.m.algar@bangor.ac.uk
Phone: 01248 383129
Location: School of Health Sciences, Fron Heulog, Bangor
Qualifications
- Fellow of the Higher Education Academy (HEA) – Ref PR296885
Higher Education Academy, 2024 - PhD: Advancing process evaluation research within the field of neurological rehabilitation
School of Healthcare Sciences, Bangor University, 2016 - Pg. Dip Occupational Therapy
School of Healthcare Sciences, Bangor University, 2010 - MSc: MRes in Applied Marine Sciences
Plymouth University, 2004 - BSc: Marine Sciences
Universidad de Cadiz, 2002
Teaching and Supervision
Current PhD students:
-
Trys Burke - ‘People power’: Modelling feasibility and mapping implementation strategies for Peer Support in Adventure Outdoor Activities as a driver to promote community wellbeing’. School of Health Sciences, Bangor University (KESS funding)
- Madhur Mrinal – Stroke survivor, life, and family care: Recovery and Rehabilitation in New Delhi (India). School of Medical and Health Sciences (Bangor University)
- Tom Graham – Exploring the implementation of AI systems for stroke care in Wales. School of Health Sciences (Bangor University)
Research Interests
Patricia is a health researcher interested in improving the lives of those affected by a neurological condition. Her research explores the impact that these conditions can have not only on the lives of those affected by them but also on the family as a whole. In 2017 Patricia and her colleagues completed a research project where they designed and evaluated a lay peer support intervention for stroke rehabilitation. Leading from that work Patricia was successful in attracting Welsh Government RCBC Wales post-doctoral fellowship funding. In her fellowship Patricia applied innovative approaches to map the experiences and identify the sources of support of young adults living in families affected by a neurological condition. Patricia has recently joined the Centre for Ageing and Dementia Research (CADR) where she will continue to develop research focussed on designing and evaluating interventions tailored to support young carers of people living with dementia. She is currently a co-investigator on a randomised controlled trial and feasibility study of the effects of an e-health intervention ‘iSupport’ for reducing distress of dementia carers, especially in the ongoing COVID-19 pandemic. Patricia leads the workpackage focussed on adapting iSupport to meet the needs of young dementia carers.
Patricia completed a BSc and a Research Master’s degree in Marine Sciences before making a career change and training as an Occupational Therapist in 2009. Her interest in the evaluation and implementation of complex rehabilitation interventions led her to a PhD during which she carried out the process evaluation of the OTCH trial (Occupational Therapy intervention for residents with stroke in UK Care Homes) that investigated the impact of a targeted course of occupational therapy on people living in nursing and residential homes after suffering from a stroke. Patricia was also part of the team based at Bangor University that lead the process evaluation of the PD COMM trial which is a phase III multi centre randomised controlled trial that aims to evaluate the effectiveness of two approaches to speech and language therapy (SLT) compared to no SLT intervention for people with Parkinson’s disease.
Postgraduate Project Opportunities
I am willing to supervise a PhD
Publications
2024
- PublishedLee Silverman voice treatment versus NHS speech and language therapy versus control for dysarthria in people with Parkinson's disease (PD COMM): pragmatic, UK based, multicentre, three arm, parallel group, unblinded, randomised controlled trial
Sackley, C. M., Rick, C., Brady, M. C., Woolley, R., Burton, C., Patel, S., Masterson-Algar, P., Nicoll, A., Smith, C. H., Jowett, S., Ives, N., Beaton, G., Dickson, S., Ottridge, R., Sharp, L., Nankervis, H., Clarke, C. E. & PD COMM collaborative group, 10 Jul 2024, In: BMJ. 386, p. e078341
Research output: Contribution to journal › Article › peer-review - PublishedOnline support for South Asian dementia caregivers
Kurana, S., Spector, A., Azadi, A., Ahuja, B., Proctor, D., Windle, G., Flynn, G., Singh, G., Mukatay, N., Masterson Algar, P., Mahmood, S., Stott, J. & Fisher, E., 1 Sept 2024, In: Journal of Dementia Care. 32, 5, p. 26-29
Research output: Contribution to journal › Article › peer-review - PublishedSustentabilidade dos oceanos, bem-estar e saúde humana
Christofoletti, R. A. & Masterson Algar, P., 24 Aug 2024, Natureza, Clima e Saúde Pública. Leão , L., Moreira Lima, L. & Savieto, R. M. (eds.). Brazil : Dos Editores, p. 456
Research output: Chapter in Book/Report/Conference proceeding › Chapter - PublishedThe effect of two speech and language approaches on speech problems in people with Parkinson's disease: the PD COMM RCT
Sackley, C., Rick, C., Brady, M. C., Burton, C., Jowett, S., Patel, S., Woolley, R., Masterson Algar, P., Nicoll, A., Smith, C. H., Abdali, Z., Ives, N., Beaton, G., Dickson, S., Ottridge, R., Nankervis, H. & Clarke, C. E., Oct 2024, In: Health Technology Assessment. 28, 58, 176 p.
Research output: Contribution to journal › Article
2023
- PublishedAdapting the World Health Organisation’s ‘iSupport’ for Young Dementia Carers
Masterson Algar, P. & Windle, G., 2 Feb 2023, p. 34.
Research output: Contribution to conference › Abstract › peer-review - PublishedHard to Reach and Hidden: Improving the Identification of Young Dementia Carers
Masterson Algar, P., Egan, K., Flynn, G., Hughes, G., Spector, A., Stott, J. & Windle, G., 23 Nov 2023, In: International Journal of Environmental Research and Public Health. 20, 23, 15 p., 7103.
Research output: Contribution to journal › Article › peer-review
2022
- PublishedEffects of an e-health intervention 'iSupport' for reducing distress of dementia carers: protocol for a randomised controlled trial and feasibility study
Windle, G., Flynn, G., Hoare, Z., Masterson-Algar, P., Egan, K., Edwards, R. T., Jones, C., Spector, A., Algar-Skaife, K., Hughes, G., Brocklehurst, P., Goulden, N., Skelhorn, D. & Stott, J., 21 Sept 2022, In: BMJ Open. 12, 9, p. e064314
Research output: Contribution to journal › Article › peer-review - PublishedExploring the impact of Covid-19 on the care and quality of life of people with dementia and their carers: A scoping review
Masterson Algar, P., Hyde, M., Cheshire Allen, M., Keating, N. & Windle, G., 1 Feb 2022, In: Dementia: International Journal of Social Research and Practice. 21, 2, p. 648-676 29 p.
Research output: Contribution to journal › Review article › peer-review - PublishedWhen One Health Meets the United Nations Ocean Decade: Global Agendas as a Pathway to Promote Collaborative Interdisciplinary Research on Human-Nature Relationships
Masterson Algar, P., Jenkins, S., Windle, G., Morris-Webb, E., Takahashi, C. K., Burke, T., Rosa, I., Martinez, A. S., Torres-Mattos, E. B., Taddei, R., Morrison, V., Kasten, P., Bryning, L., Cruz de Oliveira, N. R., Gonçalves, L. R., Skov, M., Beynon-Davies, C., Bumbeer, J., Saldiva, P. H. N., Leão, E. & Christofoletti, R., 6 Apr 2022, In: Frontiers in Psychology. 13, 809009.
Research output: Contribution to journal › Article › peer-review - PublishediSupport for Young Carers: An Adaptation of an e-Health Intervention for Young Dementia Carers
Masterson-Algar, P., Egan, K., Flynn, G., Hughes, G., Spector, A., Stott, J. & Windle, G., 22 Dec 2022, In: International Journal of Environmental Research and Public Health. 20, 1, p. 127 1 p., 127.
Research output: Contribution to journal › Article › peer-review - PublisheduSing rolE-substitutioN In care homes to improve ORal health (SENIOR): a study protocol
McKenna, G., Tsakos, G., Watson, S., Jenkins, A., Masterson Algar, P., Evans, R., Baker, S. R., Chestnutt, I. G., Smith, C. J., O'Neill, C., Hoare, Z., Williams, L., Jones, V., Donaldson, M., Karki, A., Lappin, C., Moons, K., Sandom, F., Wimbury, M., Morgan, L., Shepherd, K. & Brocklehurst, P., 18 Aug 2022, In: Trials. 23, 1, 679.
Research output: Contribution to journal › Article › peer-review
2020
- Published"Thrown into the deep end": Mapping the experiences of young people living in a family affected by a neurological condition
Masterson Algar, P. & Williams, S., 1 Apr 2020, In: Qualitative Health Research. 30, 5, p. 717-729
Research output: Contribution to journal › Article › peer-review - PublishedA Multi-Centre Randomised Controlled Trial to Compare the Clinical and Cost Effectiveness of Lee Silverman Voice Treatment Versus Standard NHS Speech and Language Therapy Versus Control in Parkinson’s Disease: a Study Protocol for a Randomised Controlled Trial
Sackley, C., Rick, C., Au, P., Brady, M., Beaton, G., Burton, C., Caulfield, M., Dickson, S., Dowling, F., Hughes, M., Ives, N., Jowett, S., Masterson Algar, P., Nicoll, A., Patel, S., Smith, C. H., Woolley, R. & Clarke, C. E., 27 May 2020, In: Trials. 21, 1, 436.
Research output: Contribution to journal › Article › peer-review - PublishedExploring perceptions of marine biosecurity interventions: insights from the commercial marina sector.
Vye, S., Wynne-Jones, S., Masterson Algar, P. & Jenkins, S., Aug 2020, In: Marine Policy. 118, 104027.
Research output: Contribution to journal › Article › peer-review - PublishedGetting back to life after stroke: Co-designing a peer-led coaching intervention to enable stroke survivors to rebuild a meaningful life after stroke
Masterson Algar, P., Burton, C., Seddon, D., Hoare, Z., Morrison, V., Arthur, C., Elghenzai, S., Williams, S. & Radford, K., May 2020, In: Disability and Rehabilitation. 42, 10, p. 1359-1372
Research output: Contribution to journal › Article › peer-review - PublishedProtocol for a definitive randomised controlled trial and economic evaluation of a community-based rehabilitation programme following hip fracture: fracture in the elderly multidisciplinary rehabilitation-phase III (FEMuR III)
Williams, N., Dodd, S., Hardwick, B., Clayton, D., Edwards, R. T., Charles, J. M., Logan, P., Busse, M., Lewis, R., Smith, T. O., Sackley, C., Morrison, V., Lemmey, A., Masterson-Algar, P., Howard, L., Hennessy, S., Soady, C., Ralph, P., Dobson, S. & Dorkenoo, S., 16 Oct 2020, In: BMJ Open. 10, 10, p. e039791
Research output: Contribution to journal › Article › peer-review
2019
- PublishedExploring the experiences of young adults living in families affected by a neurological illness
Masterson Algar, P., 7 Sept 2019.
Research output: Contribution to conference › Abstract › peer-review - PublishedThe Intertidal Zone of the North-East Atlantic Region: Pattern and Process
Hawkins, S. J., Pack, K. E., Firth, L. B., Mieszkowska, N., Evans, A. J., Martins, G. M., Åberg, P., Adams, L. C., Arenas, F., Boaventura, D. M., Bohn, K., Borges, C. D. G., Castro, J. J., Coleman, R. A., Crowe, T. P., Cruz, T., Davies, M. S., Epstein, G., Faria, J., Ferreira, J. G., Frost, N. J., Griffin, J. N., Hanley, M., Herbert, R. J. H., Hyder, K., Johnson, M. P., Lima, F. P., Masterson-Algar, P., Moore, P. J., Moschella, P. S., Notman, G. M., Pannacciulli, F. G., Ribeiro, P. A., Santos, A. M., Silva, A. C. F., Skov, M. W., Sugden, H., Vale, M., Wangkulangkul, K., Wort, E. J. G., Thompson, R. C., Hartnoll, R. G., Burrows, M. T. & Jenkins, S. R., Sept 2019, Interactions in the Marine Benthos: Global Patterns and Processes. Hawkins, S. J., Bohn, K., Firth, L. B. & Williams, G. A. (eds.). 1 ed. Cambridge: Cambridge University Press, Vol. 87. p. 7-46 40 p. (Systematics Assocations; vol. Special Volume 87).
Research output: Chapter in Book/Report/Conference proceeding › Chapter › peer-review - PublishedWhat is it like to grow up with a parent who has multiple sclerosis?
Masterson Algar, P., Jul 2019.
Research output: Contribution to conference › Abstract › peer-review
2018
- PublishedDisturbance alters ecosystem engineering by a canopy-forming alga
Pocklington, J., Jenkins, S., Bellgrove, A., Keough, M., O'Hara, T., Masterson Algar, P. & Hawkins, S. J., Jun 2018, In: Journal of the Marine Biological Association of the United Kingdom. 98, 4, p. 687-698 12 p.
Research output: Contribution to journal › Article › peer-review - PublishedThe generation of consensus guidelines for carrying out process evaluations in rehabilitation research
Masterson Algar, P., Rycroft-Malone, J. & Burton, C., 29 Dec 2018, In: BMC Medical Research Methodology. 18, 180.
Research output: Contribution to journal › Article › peer-review
2017
- PublishedFrom the Torrey Canyon to today: A 50 year retrospective of recovery from the oil spill and interaction with climate-driven fluctuations on Cornish Rocky Shores
Hawkins, S. J., Evans, A. J., Moore, J., Whittington, M., Pack, K., Firth, L. B., Adams, L. C., Moore, P., Masterson Algar, P., Mieszkowska, N. & Southward, E. C., May 2017. 30 p.
Research output: Contribution to conference › Paper › peer-review - PublishedInvestigating SLTs experiences and views of delivering LSVT and NHS standard therapy as part of their role in the PD COMM study
Masterson Algar, P., Burton, C., Brady, M. C., Nicoll, A., Clarke, C. E., Rick, C., Hughes, M., Au, P., Smith, C. H. & Sackley, C. M., Sept 2017.
Research output: Contribution to conference › Abstract › peer-review - PublishedRecruiting speech and language therapy departments in Scotland to deliver two routine NHS interventions for people with Parkinson’s disease as part of a randomised controlled trial (PD COMM)
Nicoll, A., Brady, M. C., Dickson, S., Au, P., Hughes, M., Rick, C., Sackley, C. M., Smith, C. H., Clarke, C. E., Masterson Algar, P. & Burton, C., Sept 2017.
Research output: Contribution to conference › Abstract › peer-review - PublishedThe PD COMM trial: a protocol for the process evaluation of a randomised trial assessing the effectiveness of two types of SLT for people with Parkinson's disease
Masterson-Algar, P., Burton, C. R., Brady, M. C., Nicoll, A., Clarke, C. E., Rick, C., Hughes, M., Au, P., Smith, C. H. & Sackley, C. M., 29 Aug 2017, In: Trials. 18, 1, p. 397
Research output: Contribution to journal › Article › peer-review
2016
- PublishedProcess evaluations in neurological rehabilitation: a mixed-evidence systematic review and recommendations for future research
Masterson Algar, P., Rycroft-Malone, J. & Burton, C., 8 Nov 2016, In: BMJ Open. 6, 11, 14 p., e013002.
Research output: Contribution to journal › Article › peer-review
2014
- PublishedTowards a programme theory for fidelity in the evaluation of complex interventions
Masterson Algar, P. E., Masterson-Algar, P., Burton, C. R., Rycroft-Malone, J., Sackley, C. M. & Walker, M. F., 19 May 2014, In: Journal of Evaluation in Clinical Practice. 20, 4, p. 445-452
Research output: Contribution to journal › Article › peer-review
2012
- PublishedOTCH trial process evaluation: factors mediating the delivery of the OTCH intervention according to the protocol
Masterson Algar, P., Rycroft-Malone, J., Burton, C., Sackley, C. & Walker, M., 2012. 1 p.
Research output: Contribution to conference › Abstract › peer-review
Activities
2024
- Determinants of dementia attitudes in young people
7 Nov 2024
Activity: Examination (Examiner) - Lessons learnt from a process evaluation of a multisite randomised controlled trial (RCT) evaluating the clinical effectiveness of the e-health intervention ‘iSupport for dementia carers’
Oct 2024
Activity: Oral presentation (Speaker) - Wales Dementia Conference 2024: A Collaborative Success for a Better Future in Dementia Care
The Dementia Services Development Centre (DSDC) successfully hosted the Wales Dementia Conference 2024 in Deganwy as part of the 25th anniversary of the DSDC celebrations.
Over 90 delegates from across Wales engaged in discussions about the future of dementia care and support. The conference brought together people living with dementia, carers, researchers, health and care professionals, emphasising the importance of collaboration in shaping better care.
A key highlight of the day was the launch of the Knowledge is Power for Carers booklet, a resource created by carers for carers, supported by DSDC researchers, available in both Welsh and English. This essential guide provides crucial information to those supporting individuals living with dementia and was well-received by attendees.
A diverse range of presenters delivered insightful talks, including the Welsh Ambulance Trust, NHS, Dementia Hub Swansea, with people living with dementia and their carers sharing their experiences throughout the day while attendees contributed to discussions on improving dementia services. The bilingual conference ensured accessibility, with simultaneous translation headsets provided for participants.
Gill Windle, Professor of Ageing and Dementia Research, said, “This was another excellent event designed and delivered by the DSDC team. Feedback from delegates indicates they enjoyed the wide variety of presentations where we heard about excellent service innovations such as transforming ambulances, using national museums to support wellbeing, understanding a person’s life story to enable people in care homes to eat and drink well, the importance of the Welsh language in dementia care, the benefits of arts activities and movement to music, which included all the delegates taking part in a reviving session led by Gwynedd Council’s Dementia Actif team. We heard throughout the day from people with dementia and their carers about their experiences, including Bangor’s own Caban Group, which delegates found especially important. It was also a great opportunity to share our latest research and all the different products our work has inspired.”
The Knowledge is Power booklet will soon be available on the DSDC website. For hard copies please contact Dr. Jen Roberts: j.roberts@bangor.ac.uk
18 Sep 2024
Links:
Activity: Types of Public engagement and outreach - Public lecture/debate/seminar (Contributor) - Using art-based approaches to implement research co-design
24 Jun 2024
Activity: Invited talk (Speaker) - Hard to reach and hidden: Improving the identification and support for young dementia carers
Webinar
18 May 2024
Links:
Activity: Invited talk (Speaker) - iSupport for Young People: how can we support young people who live in families affected by dementia?
18 May 2024
Activity: Invited talk (Speaker) - iSupport for Young People: A tool to explore the needs of youngsters who live in a family affected by dementia
13 May 2024
Activity: Invited talk (Speaker) - Panel discussion: Psychoeducation interventions for Dementia carers: iSupport
9 May 2024
Activity: Invited talk (Speaker) - Occupational therapy interventions for people with dementia from diverse groups: A realist inquiry
PhD Examination
May 2024
Activity: Examination (Examiner) - Special Round Table: Young Carers
Invited as external expert adviser
12 Apr 2024
Activity: Invited talk (Speaker) - Hard to Reach and Hidden: Improving Identification of Young Dementia Carers
Apr 2024
Activity: Oral presentation (Speaker) - Hard to reach and hidden: Improving the identification and support for Young Dementia Carers
Apr 2024
Activity: Oral presentation (Speaker) - iSupport for Young People: A tool to explore the needs of Brazilian, Spanish, and Italian youngsters who live in a family affected by dementia
Apr 2024
Activity: Oral presentation (Speaker) - An exploration of HIV prevention interventions targeted at Hill Tribe groups in Northern Thailand
Internal examiner
Mar 2024
Activity: Examination (Examiner)
2023
- iSupport for Young Carers: An Adaptation of an e-health Intervention for Young Dementia Carers.
The number of children and adolescents who have caring responsibilities for a family member with dementia is rising. They need help to understand the illness and how it can affect their family member.
Drawing from the experiences of young dementia carers (n=6, mean age=13.5) and relevant professionals (n=5) we followed a co-design approach to adapt iSupport for young dementia carers. Participants took part in three workshops and provided individual contributions. Feedback was analysed and adaptations organized according to the dimensions of the Ecological Validity Model (e.g., structure, content, context and language). By focussing on these dimensions, we intended to increase the relevance and the acceptability of iSupport to this new target group while keeping to the theoretical premises underpinning it.
Informed by collated feedback a number of adaptations were carried out. Case scenarios included in the original iSupport were edited and new ones created placing the focus on a young character with caring responsibilities within a family unit. These characters were young people with a parent or grandparent living with dementia. Also, illustrations portraying human characters representing a range of ages and ethnicities were added throughout. These characters emphasised the actions described within the carer case scenarios. Adaptations to the ‘design’ and ‘language’ were also carried out. For example, the quantity and complexity of the text was reduced as much as possible without compromising its readability and meaning. Clarity and appeal were increased by changing font size, style and including brighter colour schemes.
Adaptations resulted in the creation of iSupport for Young Carers which is the first e-health intervention of its kind and aims to support the mental health, knowledge, and skills of young dementia carers. This new adaptation provides opportunities for other countries and demographic groups to translate and adapt iSupport for Young Carers to their specific cultural context.
17 Oct 2023
Links:
Activity: Oral presentation (Speaker) - BU-IIA Funded Project: iSupport Young Carers as a driver of change in how we support young people living in families affected by dementia
iSupport for Young Carers (iSupport YC) is the only online interactive support tool for young dementia carers in the world. We propose a plan of work that will allow this innovation to be rolled out and implemented across health, social, charity and education sectors in 1. Wales and the UK, and 2. In Brazil and Spain.
Funding awarded through the Bangor University Innovation and Impact Award (Research Wales Innovation Funding). Value = £33,956
1 Aug 2023 – 31 Jul 2024
Activity: Other (Contributor) - Psychosocial Applications of Technology for Health and Wellness Coaching of Older Adults with Dementia and Mild Cognitive Impairment and their Carers in Rural Areas
External reviewer
Jul 2023
Activity: Examination (Examiner)
2021
- Universal challenges of being a dementia carer: experiences from Brazil and UK
Across the world those who care for a loved one with dementia share similar challenges. In this seminar, Patricia will explore these challenges and explain the work they have done with carers in Santos (Sao Paolo, Brazil) and in Rhyl (Wales, UK). Carers were invited to share their thoughts in group discussions and also using simple art materials to draw (doodle). During the seminar, the audience will also be able to watch a short film where Brazilian and British carers themselves share their thoughts on what it is like to care for someone with dementia on opposite sides of the world.
13 Oct 2021
Links:
Activity: Invited talk (Speaker) - Universal challenges of being a dementia carer: experiences from Brazil and UK
Across the world those who care for a loved one with dementia share similar challenges. In this seminar, we will explore these challenges and explain the work they have done with carers in Santos (Sao Paolo, Brazil) and in Rhyl (Wales, UK). Carers were invited to share their thoughts in group discussions and also using simple art materials to draw (doodle). During the seminar, the audience will also be able to watch a short film where Brazilian and British carers themselves share their thoughts on what it is like to care for someone with dementia on opposite sides of the world.
28 Sep 2021
Activity: Invited talk (Speaker) - Using art-based methods and ‘doing’ to explore human experiences
School of Health Sciences Research Summer School 2021
5 Jul 2021
Activity: Invited talk (Speaker) - Working together under the OneHealth approach
Interdisciplinary workshops - Global Challenges Research Fund
Working together under the OneHealth approach
The overall aim of these workshops was for them to act as a path to establish collaborative interdisciplinary research working groups under the WHO One Health approach. More specifically these workshops aimed to:
- Be an opportunity to share knowledge/expertise between the UK and Brazilian researchers already working in this interdisciplinary area (environment-art-health).
- Identify research links to the OneHealth agenda, closely linked to addressing key Sustainable Development Goals (SDG’s) (SDG3, Good Health and Well-being; SDG10, Reduced Inequality; SDG11, Sustainable Cities and Communities; SDG14 Life underwater)
- Develop a pathway for future collaborations under the OneHealth/Agenda 2030 global agendas.
1 May 2021 – 15 Jun 2021
Activity: Participation in Academic workshop, seminar, course (Speaker) - Centre for Ageing and Dementia Research (CADR) A time of change; A time to change?
The overall theme of the conference is Past, Present and Future in relation to the global pandemic and the effect that it has had on the lives and livelihoods of older people. The event will cover topics such as environments of ageing, housing, transport, cognition and dementia, employment and creative arts.
24 Mar 2021
Activity: Participation in Academic conference (Speaker) - Exploring the impact of Covid-19 on the care and quality of life of people with dementia and their carers: A scoping review of published Research.
Exploring the impact of Covid-19 on the care and quality of life of people with dementia and their carers: A scoping review of published Research.
24 Mar 2021
Activity: Invited talk (Speaker)
2019
- Exploring the experiences of young adults living in families affected by a neurological illness
5 Sep 2019
Activity: Oral presentation (Speaker) - What is it like to grow up with a parent who has a multiple sclerosis?
Background
More than 12 million people in the UK are affected by a neurological illness such as MS. Strong evidence suggests that these conditions generate a variety of socio-economical stresses that can have a damaging impact on the way the person and their family live their lives.
Aim
The overall aim of this study was to investigate the impact that having a parent with a neurological illness such as MS can have on young adults’ experiences of growing up. This study also explored support networks of these young adults and investigated the accessibility of current peer support initiatives.
Method
The study design followed a case-study approach. Within the MS case study the researcher: 1. Carried out semi-structured interviews with young adults living in families affected by MS (n=15); 2. Organized 1-day workshop in which all participants were given the opportunity to provide feedback and critique initial themes identified during the analysis of interview data. During the workshop, young adults were also asked to identify and represent their support networks using a variety of materials such as Lego or Play Dough in order to engage in meaningful discussion.
Findings
Four themes were identified across all case studies: 1. The illness has shaped my family, and me; 2. They (people outside my family) do not understand; 3. Thrown into the deep end (learning as I go along); 4. I need to talk about this. Support networks were identified as being highly reliant on the ‘closed knit family’. Young adults overwhelmingly stated that due to lack of understanding of their peers and teachers and fear of being stigmatized they rarely shared their challenges or asked for help.
Conclusion
More needs to be done to support young people growing up in a family affected by MS. Schools in particular need to address this need and provide opportunities to share knowledge and generate meaningful conversations around these neurological conditions and their impact on everyday life
4 Jul 2019
Activity: Oral presentation (Speaker)
2016
- Development of a peer led coaching intervention
Jun 2016
Activity: Oral presentation (Speaker)
2015
- Federal University of the State of Sao Paolo
Invited to give a talk to the Occupational Therapy research department. Title of the talk: "OTCH Process Evaluation"
Feb 2015
Activity: Visiting an external academic institution (Visiting researcher)
2013
- The role of process evaluations in complex rehabilitation research
Sep 2013
Activity: Oral presentation (Speaker) - iSupport YC: An adaption of iSupport for Young Dementia Carers.
Jun 2013
Activity: Oral presentation (Speaker)
2012
- OTCH trial process evaluation: factors mediating the delivery of the OTCH intervention according to the protocol
Feb 2012
Activity: Oral presentation (Speaker)
Projects
-
Adolesents andyoung adults as caregivers for a parent with a neurological condition
01/09/2017 – 01/08/2019 (Finished)