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Unformatted text preview: University of Dublin Trinity College Dublin School of Nursing and Midwifery The Strengths and Weaknesses of Publicly-funded Irish Health Services Provided to Women with Disabilities in Relation to Pregnancy, Childbirth and Early Motherhood May 2010 Prepared for the National Disability Authority by: Prof. Cecily Begley Prof. Agnes Higgins Dr. Joan Lalor Dr. Fintan Sheerin Dr. Jane Alexander Dr. Honor Nicholl Ms. Denise Lawler Mr. Paul Keenan Ms. Teresa Tuohy Ms Roisin Kavanagh The Strengths and Weaknesses of Publicly-funded Irish Health Services Provided to Women with Disabilities in Relation to Pregnancy, Childbirth and Early Motherhood School of Nursing and Midwifery, Trinity College Dublin Table of Contents Table of Contents................................................................ii List of Tables......................................................................vi List of Figures....................................................................vi Acknowledgements............................................................vii Executive Summary..........................................................viii 1. Introduction.....................................................................................................viii 2. Background....................................................................................................viii 3. Aim and objectives...........................................................................................ix 3.1. Aim.............................................................................................................ix 3.2. Objectives...................................................................................................x 4. Study methods..................................................................................................x 4.1. Study design...............................................................................................x 4.2. Recruitment...............................................................................................xi 4.3. Data analysis.............................................................................................xi 4.4. Rigour........................................................................................................xi 4.5. Ethical issues.............................................................................................xi 5. Findings and discussion..................................................................................xii 5.1. The current models of maternity care.......................................................xii 5.2. Infrastructure............................................................................................xv 5.3. Communication........................................................................................xvi 5.4. Women-centred care..............................................................................xviii 5.5. The need for flexible maternity care.......................................................xxii 5.6. The need for integrated, collaborative services......................................xxii 5.7. The need for education of health professionals.....................................xxiii 6. Summary......................................................................................................xxiv 7. Recommendations........................................................................................xxvi 7.1. For the Department of Justice, Equality and Law Reform.....................xxvi 7.2. For the Department of Health and Children..........................................xxvi 7.3. For the Health Service Executive (and partner agencies)....................xxvii 7.4. For maternity hospitals/units (including community care)....................xxviii 7.5. For professional bodies..........................................................................xxx 7.6. For voluntary agencies and support groups...........................................xxx 7.7. For women with disabilities....................................................................xxxi 7.8. Further research....................................................................................xxxii Chapter 1 Findings from interviews with women: demographic information...................................................33 1.1. Introduction..................................................................................................33 1.2. Participant demographics............................................................................34 1.2.1. Profile of all women in the study...........................................................34 1.2.2. Profile of women with physical disability...............................................37 1.2.3. Profile of women with hearing impairment............................................39 1.2.4. Profile of women with vision impairment...............................................39 1.2.5. Profile of women with mental health difficulties....................................40 1.2.6. Profile of women with intellectual disability...........................................41 1.3. Overall sample profile..................................................................................41 ii The Strengths and Weaknesses of Publicly-funded Irish Health Services Provided to Women with Disabilities in Relation to Pregnancy, Childbirth and Early Motherhood School of Nursing and Midwifery, Trinity College Dublin 1.4. Layout of findings from individual interviews...............................................42 Chapter 2 Findings from interviews with women Theme One: Availability........................................................................43 2.1. Introduction..................................................................................................43 2.2. Structure of publicly-funded health services................................................43 2.3. Choice in relation to model of maternity care..............................................44 2.4. Availability of speciality support for women experiencing mental health difficulties............................................................................................................47 2.5. Collaboration and referral to other health professionals.............................49 2.6. Collaboration and referral to voluntary organisations and agencies...........50 2.7. Community support......................................................................................51 2.8. Conclusion...................................................................................................54 Chapter 3 Findings from interviews with women................56 Theme Two: Accessibility...................................................56 3.1. Introduction..................................................................................................56 3.2. Barriers to diagnosing pregnancy................................................................56 3.3. Information in accessible formats................................................................57 3.4. Transport to and from maternity units..........................................................58 3.5. Making appointments..................................................................................61 3.6. Structural environment................................................................................62 3.6.1. Accessing the appointment...................................................................62 3.6.2. Physical layout of clinics and wards.....................................................66 3.6.3. Navigating around the unit....................................................................69 3.6.4. Postnatal ward......................................................................................70 3.6.5. Equipment.............................................................................................73 3.7. Accessing emergency services...................................................................76 3.8. Accessing mental health support.................................................................76 3.9. Conclusion...................................................................................................81 Chapter 4 Findings from interviews with women................82 Theme Three: Accommodation...........................................82 4.1. Introduction..................................................................................................82 4.2. Providing information...................................................................................82 4.2.1. The ultrasound scan..............................................................................82 4.2.2. Exchange of information.......................................................................86 4.2.3. Sign language interpreters....................................................................92 4.3. Planning and preparation............................................................................94 4.3.1. Antenatal classes..................................................................................94 4.3.2. Using a birth plan..................................................................................97 4.3.3. Assessment of needs............................................................................98 4.4. Continuity of carer......................................................................................100 4.5. Assistance and support.............................................................................102 4.5.1. Assistance and support from health professionals.............................102 4.5.2. Assistance and support with baby-feeding.........................................106 4.5.3. Assistance and support at home.........................................................108 4.5.4. Specialist support services for women experiencing mental health difficulties.......................................................................................................111 4.5.5. Gaining informed consent...................................................................114 4.6. Person-centred care..................................................................................116 iii The Strengths and Weaknesses of Publicly-funded Irish Health Services Provided to Women with Disabilities in Relation to Pregnancy, Childbirth and Early Motherhood School of Nursing and Midwifery, Trinity College Dublin 4.7. Conclusion.................................................................................................119 Chapter 5 Findings from interviews with women..............120 Theme Four: Acceptability and attitudes...........................120 5.1. Introduction................................................................................................120 5.2. Interpersonal relationships and interactions..............................................120 5.2.1. Introduction.........................................................................................120 5.2.2. Interpersonal relationships and interactions with midwives................121 5.2.3. Interpersonal relationships and interactions with public health nurses ......................................................................................................................123 5.2.4. Interpersonal relationships and interactions with doctors...................126 5.2.5. Interpersonal relationships and interactions with other health professionals.................................................................................................128 5.2.6. Health professionals’ empathy and sympathy....................................131 5.3. Health professionals’ attitudes...................................................................132 5.3.1. Health professionals’ attitudes to pregnancy and disability................132 5.3.2. Health professionals’ attitudes to screening for inherited disorders/disability.........................................................................................136 5.3.3. Health professionals’ attitudes to parenting and disability..................138 5.4. Health professionals’ knowledge and understanding about disability or impairment........................................................................................................142 5.4.1. Health professionals’ lack of knowledge.............................................142 5.4.2. Lack of recognition of postnatal mental health problems by midwives ......................................................................................................................144 5.4.3. Lack of understanding of mental health difficulties.............................145 5.5. Conclusion.................................................................................................146 Chapter 6 Findings from interviews with women..............148 Theme Five: Affordability.................................................148 6.1. Introduction................................................................................................148 6.2. Transport costs..........................................................................................148 6.3. Costs of additional services.......................................................................149 6.4. Conclusion.................................................................................................151 Chapter 7 Findings from focus group interviews..............152 7.1. Introduction................................................................................................152 7.2. Participant demographics..........................................................................153 7.3. Findings - health professional groups.......................................................154 7.3.1. Framework guiding focus group discussions......................................154 7.3.2. Accessibility needs of women with disabilities during pregnancy, childbirth and early motherhood....................................................................155 7.3.3. Accommodation needs of women with disabilities during pregnancy, childbirth and early motherhood....................................................................157 7.3.4. Acceptability needs of women with disabilities during pregnancy, childbirth and early motherhood....................................................................170 7.3.5. Quality of services...............................................................................171 7.3.6. Challenges to delivering services.......................................................174 7.3.7. Addressing the challenges to service provision..................................177 7.4. Introduction to the focus group with intellectual disability service providers ..........................................................................................................................179 7.5. Findings - intellectual disability service providers.....................................180 iv The Strengths and Weaknesses of Publicly-funded Irish Health Services Provided to Women with Disabilities in Relation to Pregnancy, Childbirth and Early Motherhood School of Nursing and Midwifery, Trinity College Dublin 7.6. Conclusion.................................................................................................183 Chapter 8 – Discussion.....................................................185 8.1. Introduction................................................................................................185 8.2. Context of maternity care in Ireland..........................................................186 8.3. Findings.....................................................................................................188 8.3.1. The current models of maternity care.................................................188 8.3.2. Infrastructure.......................................................................................191 8.3.3. Communication...................................................................................192 8.3.4. Women-centred care..........................................................................195 8.3.5. The need for flexible maternity care...................................................198 8.3.6. The need for integrated, collaborative services..................................199 8.3.7. The need for education of health professionals..................................200 8.4. Summary...................................................................................................200 8.5. Recommendations.....................................................................................203 8.5.1. For the Department of Justice, Equality and Law Reform..................203 8.5.2. For the Department of Health and Children........................................203 8.5.3. For the Health Service Executive (and partner agencies)..................204 8.5.4. For maternity hospitals/units (including community care)..................205 8.5.5. For professional bodies.......................................................................206 8.5.6. For voluntary agencies and support groups.......................................207 8.5.7. For women with disabilities.................................................................208 8.5.8. Further research.................................................................................208 8.6. Conclusion.................................................................................................209 References......................................................................210 Appendices.....................................................................213 Appendix 1 List of voluntary agencies contacted.............................................213 Appendix 2 The study methodology................................................................214 1. Introduction...............................................................................................214 2. Aim and objectives....................................................................................216 3. Definition of terms.....................................................................................217 4. Study methods..........................................................................................217 5. Sample size...............................................................................................228 6. Data collection...........................................................................................231 7. Data analysis.............................................................................................233 8. Rigour........................................................................................................234 9. Ethical issues............................................................................................234 10. Conclusion..............................................................................................237 Appendix 3 Participant information...................................................................238 Appendix 4 Interview schedule for individual interviews..................................251 Appendix 5 Interview schedules for focus groups with health professionals...255 Appendix 6 Audit trail - example of first and second round coding of data......260 Appendix 7 Participant demographic figures – interviews with women...........293 v The Strengths and Weaknesses of Publicly-funded Irish Health Services Provided to Women with Disabilities in Relation to Pregnancy, Childbirth and Early Motherhood School of Nursing and Midwifery, Trinity College Dublin List of Tables Table 1 Number of interviews in each strand.....................................................33 Table 2 Age profile of all women participating...
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  • Spring '14
  • AntonioBaez
  • The Land, ........., School of Nursing and Midwifery, Irish health services

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