Eternal: healthcare for girls and women with cerebral palsy across the life course

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As cerebral palsy (CP) has traditionally been understood as a childhood impairment that remains static across the life course, this study will make a unique contribution to knowledge and practice by generating new understandings of how women experience CP across the life course, including the embodied changes they encounter as they grow older. It will also generate first-hand evidence of the barriers and facilitators to good quality healthcare for this group at critical points across the female life cycle, evidencing good practice that can be learnt from and poor practice that could be improved upon.

The research will enable service users to make an informed contribution to the development of education and training tools for healthcare students and practitioners, and health policies, interventions and clinical guidelines aimed at overcoming barriers and improving healthcare delivery for girls and women with CP in particular, and disabled women in general, at critical stages of the life course – from menarche to menopause.

Key researcher

S ShahDr Sonali Shah

Burdett Research Fellow

School of Nursing

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Background

Globally two in 1000 live births result in Cerebral Palsy. Advancements in neo-natal and childhood healthcare treatments and technologies, disability policies, welfare rights, and adult health and social care services have influenced an increase in the life expectancy of people with CP.   Recent unpublished data collated by Scope UK suggests that the population living with CP in England and Wales is 141,750,273. In general, the prevalence of impairment (CP and other conditions) is higher for women than men - 19.2% and 12% respectively (World Report on Disability, 2011), suggesting that women with CP are a growing patient group, who are increasingly living into older adulthood. However as they grow older and move across the critical stages of the female life-cycle: from menarche (adolescence, age 14-17) through child bearing and rearing (adulthood, age 18-55) to menopause and beyond (older life, age 55-75), they will experience specific bodily changes and related health issues.  

Research has tended to focus on CP in childhood rather than its lifelong effects. A plethora of international studies demonstrate the unmet health needs of adults with CP, but there is little that focuses on how it affects women, particularly how it manifests over the female life cycle and interacts with specific bodily changes related to reproductive and sexual health. As women grow older, CP manifests in different ways, leading to an earlier onset of age-related health issues across biomedical, psychosocial and functional domains compared to women without CP. Such can involve experiences of pain, fatigue, functional loss, osteoporosis, fractures, deterioration in mobility, strength and endurance, metabolic syndrome triggered by chronic immobility, cervical spinal change, increased risk of falls and reduced balance. Women with CP may experience bladder and bowel problems, incontinence during menstruation, and specific issues related to their reproductive health including early and severe menopausal symptoms. 

Although motor function (mobility, strength, endurance) changes for all during the maturation process, in persons with CP, musculoskeletal problems may become more pervasive, often with an earlier onset than in non-disabled persons. This process is sometimes referred to as accelerated ageing. A causal factor of this could be overuse syndrome, described in one qualitative study as ‘forcing my body over the physical limits. Pain may be due to how adults with CP perform an activity and routine movements, and is often related to soft tissue injuries in muscles, tendons, ligaments or nerves. 

Disabled women in general, and women with CP in particular, are likely to encounter physical and structural barriers to healthcare facilities, medical equipment and procedures, such as breast scanners and cervical smears, and a lack of appropriate information about areas of reproductive health including menopause, pregnancy, contraception. Cancer Research UK reported that disabled women are a third less likely to participate in breast screening, and a quarter less likely to be screened for bowel diseases than non-disabled women.

Another factor often cited as a barrier to healthcare for women with CP is the pervasive misconception that disabled women are asexual beings and unable to pursue successful reproductive journeys. They have been discouraged and sometimes physically prevented from exercising their reproductive capacities and becoming parents. This has created a culture of healthcare services where organisational, physical and attitudinal barriers may impact negatively on disabled women’s reproductive health, putting them at higher risk of developing preventable chronic secondary conditions. Another issue is the problematic transition from child-centred to adult-centred healthcare, and the lack of specialist multidisciplinary teams and expertise specific to adults with CP in general, and women with CP in particular.

Why is this needed?

Healthcare Delivery

Improvements in healthcare delivery for women and girls with CP would reduce risk of developing chronic diseases like cancer as they will participate in health promotion and prevention activities on a regular basis as their non-disabled contemporaries. Moreover accessible and regular health screenings from an early age could help reduce and prevent abuse against disabled girls and women which is statistically three times greater than that experienced by non-disabled girls and women. Women with CP are increasingly surviving into older life, so would benefit from improvements in healthcare delivery when they approach menopause so they can access health checks like mammogram technology.

A Life Course Approach to Health 

Knowledge, policy, and practice systems in the UK tend not to take a life course approach to health, but instead view children, youth, young adults and older adults as distinct populations with separate service systems. Rehabilitation services and other assistive interventions have been based on the ‘once and for all character’ of childhood impairments, thus taking the view that once individuals with childhood impairments reach maximum functional capability there is little need to worry about functional decline relating to secondary impairments.

It is increasingly important, therefore, to make sure nursing professionals understand the effects of ageing on the impairments associated with CP, and also to have specialist nursing provision to treat women with CP across the life course. This would ensure women with CP are provided with a continuity of care and information across their life, ensuring smooth medical transitions and knowledge exchanges when patients move from child to adult services. Such a resource is particularly important to women with CP given their ongoing and new health needs, including how CP interacts with the female life course.

A life course approach to healthcare for women with CP would be beneficial for health practitioners and service users to plan and ensure long-term health needs are addressed and the key risks are reduced at different stages of the life course. By ensuring successful health outcomes and social changes in SRH for women with CP, this work will improve healthcare outcomes for disabled women in general.

Meet the team

Julie Taylor headshotProfessor Julie Taylor

Professor of Child Protection

School of Nursing

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laurence-lessard-phillips-200x200Dr Caroline Bradbury-Jones

Reader in Nursing

School of Nursing

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Advisory Group

Richard Luke, Information Officer of SCOPE, the national disability charity with specialism in CP. He will contribute to the discrimination of the outputs to non-academic stakeholders. He will also assist with the recruitment of participants. https://community.scope.org.uk/categories/talk-to-our-cerebral-palsy-information-officer

Dr Ruth Bailey is a lecturer with the Open University, and is woman with CP with PhD and Postdoctoral research experience in disability and healthcare.

Pip Logan is Professor of Rehabilitation Research, in the Faculty of Medicine & Health Sciences, University of Nottingham. She is an occupational therapist whose research is mainly concerned with health services rehabilitation, with particular emphasis on the community.   She also works clinically for Nottingham City Care Partnership (NHS) in the community rehabilitation team and in the Acute Hospital for the Health Care of the Elderly Directorate. 

Janice McLaughlin is Professor of Sociology at the University of Newcastle. Her research explores various aspects of childhood disability via qualitative methods and in partnership with families and disability organisations. 

Zara Todd is stakeholder and engagement manager for Project Scotland. She is a woman with CP and a disability rights campaigner with disability organisations internationally, advocating for disabled people to have a say about issues that affect their lives. 

Theresa Lorenzo is Professor in Disability Studies and Occupational Therapy at University Cape Town. Her research focuses on access to health and support services for disabled women. She will help to ensure the research is disseminated to academic, disability and service provider groups internationally.  

Dr Joanne Hobson

Dr Bronagh Byrne is a lecturer in Social Policy at Queen's University Belfast with research interests  international disability rights and children’s rights  particularly on the application of the UN Convention on the Rights of the Child and the UN Convention on the Rights of Persons with Disabilities to national policy and practice. She currently Co-Director of the Centre for Children's Rights and co-chair of the Disability Research Network at QUB.  She has extensive links with Disabled People’s Organisations in Ireland.

Aims and Objectives

Overall aims

To explore views and experiences of females with CP, and nurses/midwives in relation to the health and healthcare of girls and women with CP across the life course.

Objectives

  1. Understand  the physical, social and psychosocial effects of growing older for women with CP
  2. Identify the barriers and enablers to appropriate sexual and reproductive healthcare for girls and women with CP across the female life course (adolescence, adulthood and older life)
  3. Learn about nurses’ and midwives’ attitudes, experiences and knowledge in relation to patients who are teenage girls and adult women with Cerebral Palsy

Research Questions and Outputs

Research questions

What interventions and transitions have a positive or negative impact on women with CP?

  1. What are the barriers and facilitators of nursing care delivery at different stages of the female life-cycle for women with CP?
  2. What are the experiences of SRH nursing care and treatment for teenagers and middle and older age adult women with CP?
  3. What ideas are there for nursing practice that would enhance care and stimulate social change for disabled women?

Expected Outputs

  1. Guidance and recommendations for the Burdett Trust for Nursing, Scope, other charities and Third Sector Organisations
  2. A short film of case studies will be posted on YouTube for international audiences, including academics, researchers and policymakers. The film will be based on some of the interviews with women and nurses and midwives, with their consent.
  3. Produce online learning resources, guidance and recommendations for current and future health providers on how to maintain the SRH of women with CP in particular, and disabled women in general, across the life course. The learning resources will be piloted with students in the School of Nursing, University of Birmingham.
  4. Dissemination workshop event for participants, researchers and practitioners in health and social care, at the University of Birmingham towards end of Year 2 of the project.

Methods

Demographic information will be collected from recruitment questionnaire sent to participants before interviews. They will be used to will establish if the participants meet the inclusion criteria and also indicate the preferred method of participation. The questionaires will be used to describe the characteristics of the sample. The recruitment questionnaire will establish if they meet the inclusion criteria and also indicate the preferred method of participation. When this information has been obtained, participants will be sent a Consent Form and the interview will be arranged.

The proposed qualitative study, underpinned by a feminist disability studies framework, aims to explore and understand the experiences of being a woman with CP across the life course, and how to improve their access to SRH at different stages of the female life-cycle.

The study is mixed method with the following phases:

Phase 1: Scoping review

The review will particularly focus on:

  1. Access to, and experiences of healthcare for teenage girls with CP, women with CP, and older women with CP
  2. Physical, social and psychosocial effects of CP for women at different stages of the life-course
  3. Barriers and enablers for patients with CP in paediatric and adult healthcare

Phase 2: Life course interviews with girls and women

One-off life course interviews will be conducted with three cohorts of girls/women who self-identify as having CP; are based in England, Scotland, Wales or Northern Ireland, and are within ages 14-17 (teenage years), 18-54 (young and middle adulthood) and 55-75+ (older adulthood). Each cohort will correspond to the temporal stages of the female life cycle.

Phase 3: Interviews with nurses and midwives

Semi-structured interviews will be conducted with 20-30 nurses and midwives working across fields of healthcare associated with sexual and reproductive health. The sample will include nurses in adult and paediatric healthcare across the four countries of the UK.

Phase 4: Data analysis and Synthesis

The findings from the different parts.

Participants/Participation and recruitment

This study is about:

  • What it means for women to grow up and older with CP - physical, psychological and lifestyle effects at different times of life.
  • Experiences of sexual and reproductive healthcare across life (from age 14 to 75+, puberty to menopause and beyond) - including barriers and enablers.
  • How to improve nursing practice for disabled women in general and women with CP in particular

So we want to talk to two groups of participants:

  1. Girls and women who:
    1. self-identify as having CP (physical impairments)
    2. are based in England, Scotland, Wales or Northern Ireland
    3. are within ages 14-17 (teenage), 18-54 (young and middle adulthood) and 55-75+ (older adulthood).
  2. Nurses and midwives whowork in England, Scotland, Wales or Northern Ireland
    1. work across fields of healthcare associated with sexual and reproductive health, or disability
    2. work in adult and paediatric healthcare

If you are interested to participate in the study please contact Dr Sonali Shah by email at s.shah.3@bham.ac.uk

To save time have a look at the forms below, please fill in the recruitment form and then email it to Sonali Shah once completed.

Recruitment forms

Participant Consent form
Recruitment form - Women
Recruitment form - Nurses
Download the recruitment poster

Participant information leaflets

Participant information leaflet for adult women
Participant information leaflet for nurses and midwives
Participant information leaflet for under 16 year olds
Participant information leaflet for parents of those under 16