Strengthening health knowledge and action through engagement with diverse communities

Dr Cathy Vaughan1

1 Senior Lecturer and (Acting) Head, Gender and Women’s Health Unit, Centre for Health Equity, Melbourne School of Population and Global Health, The University of Melbourne

Abstract

There is increasing recognition that the relevance, rigour and reach of health research and interventions are strengthened by engagement and collaboration with those who have the most at stake in the outcomes – that is, patients, consumers and members of the communities particularly affected by the health issues being addressed. This presentation will present evidence for the impact of participatory approaches to health research, outlining how participatory approaches can strengthen our science and enhance uptake and translation into changed policy and practice. It will draw on case studies of participatory action research with women with disabilities and with migrant and refugee communities, reflecting on the challenges inherent in community collaboration and engagement, and suggest strategies by which allied health professionals may be able to incorporate greater consumer participation in their research and interventions.

Biography

Dr. Cathy Vaughan is a Senior Lecturer (Gender and Women’s Health), and Acting Head of the Gender and Women’s Health Unit in the Melbourne School of Population and Global Health, at the University of Melbourne. Dr. Vaughan is recognised in the international health and development sector for excellence in participatory research practice, and she currently leads the Melbourne Social Equity Institute’s university wide community-engaged research program.  Dr. Vaughan has experience with a range of participatory research methods, and has particular expertise in the use of Photovoice.  She has published extensively on participatory research methodology and on ethical issues arising in participatory research practice.  Her research focuses on gendered health inequalities, violence against women, and sexual and reproductive health; primarily working with women with disabilities, migrant and refugee women, and young people, in Australia and in diverse settings in Asia and the Pacific.

 

Parents’ experiences of formal assessment for their child with cerebral palsy- a qualitative study.

Ms Bridget O’Connor1, Dr Christine Imms1, Dr Claire Kerr2, Dr Nora Shields3, Dr Brooke Adair

1School of Allied Health,  Australian Catholic University, Albury, Australia, 2School of Nursing and Midwifery, Queen’s University Belfast, Belfast,  UK, 3School of Allied Health, La Trobe University, La Trobe University, Australia

Abstract:

Aim:
Allied health practitioners question the compatibility of evidence-based assessments and family-centred care. This study aimed to explore parents’ experiences of evidence-based assessments for their child with cerebral palsy.

Method:
A qualitative study using Interpretive description was undertaken. Primary carers of children with cerebral palsy (aged 3-18 years) were purposively sampled. Face-to-face interviews were conducted, audio-taped and transcribed. Data were analysed to yield a conceptual description of parents’ experience of assessment. Credibility was ensured through: journal reflections; co-author reviews; audit trail; and participant member-checking of the final conceptual description.

Results:
Six themes emerged from interviews with 14 primary carers: (1) Protection; (2) Framing assessment positively; (3) Bridging the Gap; (4) Involvement; (5) Finding Worth; and (6) Trust. Central to parents’ experience of assessment was protection of child identity and personal self. Formal assessment was motivating and informative but also confronting and persistently challenging for parents. Framing assessment and diagnosis positively was deemed essential. Parents’ involvement ranged from being overlooked to being instigators of assessment. Assessments were ‘worth it’ only when relevant to parents’ current focus and outcomes were transferable to the family context. Trust was built on familiarity, openness, and a sense of being in good hands. Further analysis generated a descriptive metaphor and schema – The Steering Wheel for collaborative assessment.

Significance of the findings to allied health:S

The Steering Wheel provides a conceptual model to help guide clinicians, parents, researchers, tool developers and educators towards more collaborative assessment practices aligned with family-centred care.

Biography:

Bridget O’Connor is a part-time PhD candidate through Australian Catholic University. She works clinically as a physiotherapist in community paediatrics with Albury Wodonga Health. She is committed to enhancing regional allied health practices for children and families. Her doctoral programme is an investigation of allied health practitioners’ use of robust assessments for children with cerebral palsy. She will present the findings from her current study that aims to understand parents’ experiences of assessment of their child with cerebral palsy.

Drawing experiences of my loved one having a severe brain injury: Evolution in rehabilitation

Mr Martin Checklin1

1Epworth Healthcare, Balacalava, Australia

Abstract:

Aim:
To investigate what is it like for family/care giver of a patient with a severe acquired brain injury during their stay in rehabilitation.

Method:
Thematic analysis was conducted on data obtained from semi structured interviews and the drawing method (participants drew what their experience was like). Data was collected at two timepoints (admission and discharge).

Results:
Nine participants were interviewed and from the analysis, seven themes on admission were identified and five on discharge. Admission themes were Trauma (from acute experience); Relief (the loved one has survived); Interactions (processes and communications); Change (role of carer and in the LO); Grief and loss; Journey (progression and hope) and Uncertainty. Discharge themes were: Mixed Feelings (about moving forward); The ABI unit (custom built, staff expertise and staff attitude); Support of family and friends; Journey and Change.

Significance of the findings to allied health:
Clinicians have a major role in supporting the carer at this stage and can negatively or positive influence the family member’s stress levels. Positive behaviours include providing information and communication compassionately, providing specialist care, offering practical information (e.g., timetabling, pre-discharge leave, meetings) and giving reassurance. Many of the participants carried high levels of trauma from the acute phase, so these findings are not only relevant to rehabilitation clinicians but also acute clinicians. Additionally, the drawing method is discussed how it can enhance data collection in people’s perspectives and experiences

Biography:

Martin Checklin is a Senior Speech Pathologist at Epworth Healthcare. He has completed a Masters in Speech Pathology and a Masters in Health Evaluation and Research. He has an interest in making services better for those with either brain injury or head and neck cancers.

“People keep saying I had a mild stroke, there’s nothing mild about it, it’s life changing”: perceptions of provision of information and education following stroke

Ms Dimitra Chrisikakos1, Ms.  Claire  Formby1, Ms Su Wen  Ng1, Ms Rita Sarma1, Ms  Julia Hibma1, Ms Sophie  Heywood1, Ms Melissa  Ho1

1St Vincent’s Hospital Melbourne, Melbourne, Australia

Abstract:

Aim:
To determine acute and sub-acute stroke patients’ perceptions of and preferences for education during their stroke journey.

Method:
Twenty four participants attending a community rehabilitation program with a diagnosis of stroke within the previous 12 months consented to participate in a semi-structured interview via telephone or face to face.  They answered questions regarding their experience of and preferences for, stroke education across their acute, sub-acute and community-based admissions.

Results:
16.7% of participants reported receiving no stroke information or education; Of those receiving education, only 50% obtained information on lifestyle changes and medications;  less than 50% were given information on stroke recovery and life after stroke.  Information was provided in three main settings, the stroke unit (45.8%) sub-acute wards (29.2%) and the community (29.2%), with some participants receiving information in more than one setting.

Major themes from results include:

  • inadequate provision of information, particularly on stroke recovery
  • feeling overwhelmed with written material
  • wanting family or carer(s) present when information provided
  • identified emotions of confusion, low mood, distress
  • information delivery via direct discussion preferred

Significance of the findings to allied health:
Providing stroke education is a key component of rehabilitation.  Nevertheless, results demonstrate not all clients perceive they have received the required information.  Variations in patients’ preference for timing and delivery of information suggest that individualised, direct discussions with clients could better meet their needs.

Biography:

Dimitra is a Speech Pathologist who completed a Master of Speech Pathology at La Trobe University in 2008.

She has over 10 years of professional clinical experience, with the majority of her career working in multidisciplinary Stroke/Neurological rehabilitation in the community setting.

Consumer feedback in Stroke and Neurology ward design

Miss Katherine Clarke1, Professor Karen Willis1,2

1Melbourne Health, Parkville, Australia, 2La Trobe University, Bundoora, Australia

Abstract:

Title:
Consumer Feedback in Stroke and Neurology Ward Design

Aim:
While it is now recognised that the physical environment impacts on the healthcare experience of patients there is minimal empirical evidence about how patients feel about the acute care environment or about involvement of consumers in health environment co-design. During the process of establishing a new Hospital Stroke and Neurology Ward at Melbourne Health, we sought feedback from stroke and neurology inpatients and their families to establish what aspects of the current ward environment had a positive influence on recovery, and identify aspects that would improve the patient experience of care.

Method:
An exploratory study was undertaken.  Following ethics approval, thirty consumers completed a brief survey about the ward environment verbally with a physiotherapist working on the ward. Responses were documented verbatim. Thematic analysis of the consumer surveys was completed, and results were disseminated to the design team.

Results:
Themes included the physical dimensions such as the décor and bathroom space, the placement of technology, the need for privacy, and the need for connection with the outside environment as well as reflections about the staff.

Significance of the findings to allied health:
Consumers should be involved in health environment design because of the perspective they can bring to improving the patient experience. Allied Health staff are ideally placed to advocate for consumer engagement in these processes, and the information generated may help shape not only environmental design, but equipment needs, models of care, and therapy priorities.

Biography:

Katherine Clarke is a Senior Physiotherapist in Neurosciences at Melbourne Health. She has worked in a variety of neurological settings in Australia and in the United Kingdom. She is currently completely her Masters in Clinical Rehabilitation (Neurological Physiotherapy), and is passionate about consumer engagement in healthcare.

Osteoarthritis, risk of falls and falls prevention – is it time to change our terminology?

Dr Sze-Ee Soh1, Dr Darshini Ayton1, Dr Tess Tsindos1, Associate Professor Ilana Ackerman1

1Monash University, Frankston, Australia

Abstract:

Title:
Osteoarthritis, risk of falls and falls prevention – is it time to change our terminology?

Aim:
To explore perceived barriers and enablers to participation in falls prevention activities among older people with hip or knee osteoarthritis

Method:
Semi-structured telephone interviews were conducted with people aged over 50 years who have doctor diagnosed hip or knee osteoarthritis. Participants were sampled from two groups: (1) people who fell within the past 12 months; and (2) people with no experience of falls. The interview guide was developed based on the COM-B framework to elicit consumer views on perceptions and experiences of falls, engagement with clinicians and health services, and acceptability of falls prevention programs and resources. Data were analysed via thematic analysis.

Results:
This presentation will outline findings relating to participants’ perceptions of falls and falls prevention activities, and the barriers and enablers to accessing and engaging with healthcare services. Recruitment experiences and preliminary interview data indicate that people with osteoarthritis were reluctant to use the word ‘fall’ in their narrative experiences of falls or falls prevention activities. They also did not perceive activities such as balance and strengthening exercises to be fall prevention interventions.

Significance of the findings to allied health:
This study will provide a better understanding of the barriers and enablers to engaging in falls prevention activities among people with hip or knee osteoarthritis. This will help allied health clinicians to tailor their discussions and use acceptable language to most effectively provide information on how to reduce falls risk.

Biography:

Sze-Ee is a lecturer and research fellow at Monash University. She is a physiotherapist with extensive experience working with older adults. She has a keen interest in biostatistics, and her main areas of research include falls, Parkinson’s disease, osteoarthritis, quality of life and validating outcome measures.

Constructing a grounded theory of parents’ musical engagement with their premature baby and emerging parental identity in a neonatal unit (NU)

Dr Elizabeth Mclean1

1The University Of Melbourne/ The Royal Children’s Hospital , BELMONT, Australia

Abstract:

Title:
Constructing a grounded theory of parents’ musical engagement with their premature baby and emerging parental identity in a neonatal unit (NU)

Background:
Scholarship highlights the need to further examine and better understand and foster the process of becoming a parent to a premature baby in the neonatal context to support the critical development of the parent- infant relationship. Music therapy research documents significant benefits of music therapy on neonatal physiological and neurodevelopmental function, maternal anxiety and the parent- infant relationship.

Aim:
To explore how parents’ musical engagement with their baby contributed to their parental  identity across the NU journey.

Method:
This multi-site study utilised in-depth interviews with nine parents of a premature baby across varying time points in their NU journey. Data collection and analysis was influenced by Constructivist Grounded Theory methodology.

Results:
A substantive grounded theory illuminated the contribution of these parents’ musical engagement on their sense of parental identity in the NU. The significance of their baby’s level and type of response during musical interactions in influencing parents’ capacity to engage in musical dialogue with their baby emerged. Specific conditions that acted as both barriers and fosters in parents’ musical engagement across a high- risk pregnancy and NU admission also emerged.

Significance of the findings to allied health:
These findings highlight the powerful role of exploring parents’ perspectives of clinical care in the NU as a way of health professionals delivering more family- inclusive models of practice to support the early parenting role in the NU.

Biography:

Elizabeth is a Registered Music Therapist who specialises in music therapy practice and research within Paediatrics and Neonatology, currently working as a music therapist in the NICU at The Royal Children’s Hospital, Melbourne Australia. Elizabeth has also completed a PhD degree through The University of Melbourne, exploring music therapy’s role for supporting hospitalised infants and their families in the NICU and SCN setting, with a particular interest in the role of parental singing and voice to support the parent- infant relationship in the hospital setting. She has been employed as an Academic Assistant in the Department of Music Therapy at The University of Melbourne and is currently a casual tutor and guest lecturer.

Our consumers as “recruiters”: Patients selecting the future employees of Melbourne Health

Miss Rhiannon Beggs1

1The Royal Melbourne Hospital , Parkville 3050, Australia 

 

Aim: The importance of consumer involvement in health services is widely recognised, however, limited literature exists to dictate which approach leads to the best possible involvement of consumers. The Melbourne Health Allied Health (AH) Department implemented an innovative consumer model to determine the benefit of having a consumer voice in hiring the future workforce.

 

Method: 6 consumer representatives underwent traditional volunteer training conducted by the organisation (mandatory training & induction) with the addition of training sessions unique to AH. An in-depth overview of AH and specialist recruitment training was provided. Additionally, new procedures and workshops were offered to AH staff to support them working with consumer representatives. After a 12 month period, a survey was sent to all senior staff that were responsible for recruitment to determine the impact of having consumers on interview panels. Similarly a survey was sent to 3 active consumers to gauge their response.

 

Results: Over 12 months more than 40 interview panels were conducted with a consumer present. Survey results obtained for AH staff involved in recruitment revealed that:

  • Having a consumer voice led to improved confidence in candidate selection.
  • Staff see value in the consumer voice.
  • Staff would recommend having a consumer on interview panels.

 

Significance of the findings for Allied Health: By embedding the consumer voice in recruitment, AH is able to develop a workforce that is more able to represent our consumer needs and ensures a true partnership between staff and consumers.

Children with limb difference: Preparing for primary school

Mrs Alison Griffiths1, Miss Phoebe Thomson1

1The Royal Children’s Hospital, Parkville, Australia

 

Aim

To educate the parents of children with limb difference on resources, support and strategies to facilitate transition to primary school.

Methods

The limb deficiency team at the Royal Childrens Hospital presented an education forum for parents of children aged 3-7 years with limb differences.  The event was chaired by the Prosthetist with presentations by Social Work, Physiotherapy, Occupational Therapy, Teacher and a child and parent. This was followed by an informal discussion and question time led by the parents. Attendees were provided with a resource sheet with up to date educational resources at the end of the night. Feedback was provided in a deidentified satisfaction survey completed at the end of the night.

Results

A total of 30 people attended the evening, including 16 parents/carers. One hundred percent of respondents were satisfied with the information they received and learnt new information. Ninety one percent of respondents felt confident for their child to start primary school and knew how to support their child’s transition. All respondents would recommend the information session to others. Based on the positive feedback received similar multidisciplinary events ae planned for  the future.

Significance

A multidisciplinary education evening was found to be a valuable resource for parents of children with limb difference who are starting school

Are we meeting the wants and needs of our clients and their relatives? A survey of the Royal Rehab Brain Injury Unit physiotherapy service

Dr Joan Leung1, Mrs Sarah Fereday1, Ms Katarina Stroud1

1Royal Rehab, Ryde, Australia

 

AIMS

  1. Determine clients’ and their relatives’ level of satisfaction with the physiotherapy service.
  2. Determine what factors influence satisfaction.
  3. Determine expectations of physiotherapy.
  4. Explore the preferred physiotherapy model of delivery.
  5. Determine willingness of clients to participate in self practice.

METHOD

A cross-sectional survey of clients, their relatives and treating physiotherapists was conducted over an 18 month period and included:

  1. All clients who had adequate cognitive ability and communication skills.
  2. A relative of each client, who visited often during the weekdays or had been involved in some physiotherapy sessions.
  3. Treating physiotherapists who were blinded to the responses of the clients and relatives.

Data were analysed using descriptive statistics.

RESULTS

70% of clients and 85% of relatives were ‘highly satisfied’ with the physiotherapy service.They were most satisfied with the quality of the treatment, environment and interaction with physiotherapy staff, areas of lower satisfaction were follow up arrangements after discharge and amount of therapy.  General comments from clients and relatives were positive.

One third of clients and relatives indicated they did not know what to expect from physiotherapy on admission.

70% of clients preferred individual sessions, 30% preferred a combination of group and individual therapy.

More clients preferred physiotherapy 5 days a week than 7 days a week.

A wide range of barriers  to self practice and relatives’ involvement were identified.

SIGNIFICANCE OF FINDINGS TO ALLIED HEALTH

This survey provides specific feedback from consumers of a physiotherapy service in a Brain Injury Unit which will be of interest to other similar services and could be used to inform a survey for other disciplines.

 

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