"Effortful" motherhood: A mixed-methods study of the impact of endometriosis on family life

Introduction

Design Reflexivity statement Recruitment Participants Measures Demographics Biopsychosocial measures Depression, anxiety, and stress Perceived relationship quality Perceived social support Pain intensity Data analysis Quantitative Qualitative

| Characteristic | M (SD) | n (%) | |---|---|---| | Age (years) | 35.56 (10.56) | | | Femalea | 133 (100.00) | | | Relationship statusa | || | Single (never married) | 53 (39.85) | | | Married/de facto | 73 (54.89) | | | Divorced | 4 (3.01) | | | Separated | 1 (0.75) | | | Other | 2 (1.50) | | | Aboriginal or Torres Strait Islandera | 5 (3.76) | | | Ethnicity(s)a | || | English | 112 (84.21) | | | European | 34 (25.56) | | | Chinese | 1 (0.75) | | | Indian | 1 (0.75) | | | Other Asian | 4 (3.01) | | | Level of educationa | || | Less than year 12 | 3 (2.26) | | | Year 12 or equivalent | 23 (17.29) | | | Vocational education (TAFE) | 31 (23.31) | | | Bachelor’s degree | 50 (37.59) | | | Master’s degree | 17 (12.78) | | | PhD/doctorate | 1 (0.75) | | | Other | 8 (6.02) | | | Employment status | || | Employed | 105 (78.95) | | | Unemployed | 9 (6.77) | | | Student | 7 (5.26) | | | Other | 12 (9.02) | | | Children | || | Yes | 44 (33.08) | | | No | 89 (66.92) | | | Method of diagnosis | || | Laparoscopy/other surgery | 127 (95.49) | | | Ultrasound | 2 (1.50) | | | Symptomatic assessment | 2 (1.50) | | | Other | 2 (1.50) | | | Contraceptive pill | || | Yes | 34 (25.56%) | | | No | 99 (74.44%) | | Variable | Group | M (SD) | T | df | p | |---|---|---|---|---|---| | Depression | Mothers | 11.74 (9.63) | −1.57 | 121 | 0.12 | | Non-mothers | 14.86 (10.53) | |||| | Total sample | 13.87 (10.31) | |||| | Anxiety | Mothers | 11.08 (8.12) | 0.18 | 121 | 0.86 | | Non-mothers | 10.79 (8.76) | |||| | Total sample | 10.88 (8.53) | |||| | Stress | Mothers | 18.36 (8.87) | −0.10 | 121 | 0.92 | | Non-mothers | 18.55 (9.83) | |||| | Total sample | 18.49 (9.50) | |||| | Menstrual pain | Mothers | 6.55 (1.78) | −1.82 | 131 | 0.07 | | Non-mothers | 7.11 (1.64) | |||| | Total sample | 6.92 (1.70) | |||| | PDSA | Mothers | 4.73(2.62) | −0.41 | 130 | 0.68 | | Non-mothers | 4.92 (2.53) | |||| | Total sample | 4.86 (2.55) | |||| | Relationship satisfaction* | Mothers | 4.55 (1.61) | −2.29 | 111 | 0.02* | | Non-mothers | 5.31 (1.68) | |||| | Total sample | 5.05 (1.68) | |||| | PSS family | Mothers | 5.53 (1.35) | 1.67 | 111 | 0.10 | | Non-mothers | 5.00 (1.70) | |||| | Total sample | 5.18 (1.60) | |||| | PSS friends* | Mothers | 5.69(0.99) | 1.95 | 111 | 0.05* | | Non-mothers | 5.19 (1.41) | |||| | Total sample | 5.36 (1.30) | |||| | PSS others | Mothers | 5.92 (1.03) | 0.52 | 111 | 0.61 | | Non-mothers | 5.80 (1.34) | |||| | Total sample | 5.84 (1.24) | | Theme 1: Endometriosis can affect family life from before conception | ||||||| |---|---|---|---|---|---|---|---| | Correlate | B | SE | Beta | t | p | 95% CI lower | 95% CI upper | | Pain level | 0.078 | 0.035 | 0.247 | 2.197 | 0.031* | 0.007 | 0.149 | | DASS21 stress | −0.004 | 0.009 | −0.086 | −0.479 | 0.633 | −0.021 | 0.013 | | DASS21 depression | 0.003 | 0.006 | 0.072 | 0.506 | 0.614 | −0.009 | 0.015 | | DASS21 anxiety | 0.007 | 0.009 | 0.132 | 0.826 | 0.411 | −0.011 | 0.025 | | PSS significant other | 0.086 | 0.071 | 0.231 | 1.207 | 0.231 | −0.056 | 0.228 | | PSS friends | 0.081 | 0.064 | 0.229 | 1.265 | 0.209 | −0.046 | 0.208 | | Theme 2: Parents and children experience functional and emotional consequences | ||||||| | Pain level | 0.04 | 0.038 | 0.185 | 1.042 | 0.308 | −0.039 | 0.118 | | DASS21 stress | 0.013 | 0.011 | 0.303 | 1.12 | 0.274 | −0.011 | 0.037 | | DASS21 Depression | 0.00005 | 0.009 | 0.001 | 0.005 | 0.996 | −0.019 | 0.019 | | DASS21 Anxiety | −0.003 | 0.011 | −0.059 | −0.253 | 0.803 | −0.025 | 0.02 | | PSS significant other | −0.201 | 0.134 | −0.547 | −1.501 | 0.146 | −0.478 | 0.075 | | PSS friends | 0.018 | 0.099 | 0.05 | 0.183 | 0.856 | −0.187 | 0.223 | | Theme 4: Ripple effects on family functioning and social connections | ||||||| | Pain level | 0.044 | 0.064 | 0.152 | 0.694 | 0.495 | −0.088 | 0.177 | | DASS21 stress | −0.016 | 0.015 | −0.333 | −1.03 | 0.314 | −0.048 | 0.016 | | DASS21 depression | 0.003 | 0.01 | 0.063 | 0.29 | 0.774 | −0.018 | 0.023 | | DASS21 anxiety | 0.016 | 0.015 | 0.335 | 1.104 | 0.282 | −0.014 | 0.046 | | PSS significant other | 0.32 | 0.12 | 1.096 | 2.66 | 0.014* | 0.071 | 0.57 | | PSS friends | 0.197 | 0.14 | 0.676 | 1.409 | 0.173 | −0.093 | 0.487 | Qualitative themes | Theme | Sub-theme | Illustrative quotes | Totala (%) | |---|---|---|---| | 1. Endometriosis can affect family life from before conception | 62 (46.6) | || | No impact to date | “I was told that I would have problems conceiving and did have IVF booked in but found out I was with child 2 weeks before our appointment. Became pregnant within a year of beginning to try so it was clearly not as problematic as I was led to believe.” 48 years old, mother. | 33 (24.9) | | | “I thought for a long time that conception would be difficult, but my diagnosis shows that I am unlikely to have difficulties in that regard.” 21 years old, non-mother. | ||| | Early Family Planning Decision-Making Influenced by Medical Advice | “I became a mum much earlier than I would have liked because I was told that I needed to try "now or never" at 20. I don’t regret my decision, obviously, but I do feel it was out of my hands.” 35 years old, mother. | 9 (6.8) | | | “Some of them were real quacks and advised me to have unprotected sex and get pregnant then have a late term abortion to “reset” my hormones (which they didn’t test) for treatment of my symptoms.” 37 years old, non-mother. | ||| | “I started having children earlier than I would have, out of fear of infertility.” 47 years old, mother. | ||| | Pain and infertility derail parenthood plans | “It has impacted my plans for children, as I need an IUD just in order to function as a human. I become afraid when I think about the possibility of taking the IUD out and having to go through months of agony only to discover I may be infertile, and all the pain was a waste.” 24 years old, non-mother. | 23 (17.3) | | | “It seems the choice is out of my hands–I still greatly want to become a parent, but it seems more unlikely that I won’t be able to. This has been a great source of depression and heartbreak for me.” 32 years old, non-mother. | ||| | “I’m not sure if I want kids as I’m scared, I’ll have a girl and pass it on to her. Plus, I’m worried I won’t be able to have kids because of endo.” 42 years old, non-mother. | ||| | Challenges in conception | “I am medically infertile after having had my right ovary and both Fallopian tubes removed. We have had 1 round of IVF with no success. We are unsure if we will try another round due to financial, mental & physical reasons.” 34 years old, non-mother. | 37 (27.9) | | | “I’m very fortunate to manage having 1 healthy and beautiful child, but due to endometriosis, and how late in my life I was diagnosed and treated, our dream of a bigger family wasn’t possible.” 49 years old, mother. | ||| | “We have been TTC for 8 years, had 5 miscarriages from natural pregnancies and have been doing IVF for 3 years–5 egg collections, 5 transfers with no success.” 42 years old, non-mother. | ||| | 2. Parents and children experience functional and emotional consequences | 28 (21.0) | || | No impact | “It hasn’t. Being a parent is the most important thing to me.” 42 years old, mother. | 5 (3.7) | | | “It hasn’t.” 30 years old, mother. | ||| | Challenges in parenting | “I’m not present as a parent when I am in pain and cannot function.” 45 years old, mother. | 28 (21.0) | | | “It’s hard. I can’t bend to hug them in bed, kiss them goodnight.” 35 years old, mother. | ||| | “I feel like a useless parent when I’m unable to function and be happy when in pain.” 47 years old, mother. | ||| | When children witness parental suffering | “2 surgeries when my son was young was difficult to recover properly from, 2 surgeries when my daughter little was traumatic for her seeing me in hospital and in pain but missing special school kinder events due to recovery or pain.” 42 years old, mother. | 4 (3.0) | | | “They are hyper aware of period days and are extremely tolerant. If I could parent them without pain interference, there would be a lot less screen time. We’d be outdoors in the garden all day.” 33 years old, mother. | ||| | “I can’t do anything I love. I’m quick to anger and I’m worried I’m raising kids who are anxious about my mood. That thought terrifies me. I can’t go on walks with my kids. I’m a gardener, but I can barely do anything because of this horrific disease. And the worst part is knowing it will never change.” 35 years old, mother. | ||| | 3. Endometriosis Dampens Romantic Relationships | 18 (13.5) | || | Strain on sexual intimacy | “My sexual life became a disaster because of the pain and discomfort.” 49 years old, mother. | 13 (9.8) | | | “My sex life is ruled by pain and discomfort.” 27 years old, non-mother. | ||| | “I’m a 27yr old virgin because it’s too painful to have anything up there let alone sex so anatomically is impossible right now.” 27 years old, non-mother. | ||| | Challenges in forming and sustaining empathetic partnerships | “The mood swings, low libido etc contributed to the end of my long-term relationship, plus, along with PCOS meant I we didn’t get pregnant.” 48 years old, non-mother. | 4 (3.0) | | | “Broke down my relationship and worry about painful sex doesn’t make me confident in entering a new one.” 48 years old, non-mother. | ||| | “I feel that I have to almost put my relationships into a ’rush’ as my fertility may be affected. I’ve had partners that have not believed that I had endometriosis that has impacted on my mental health.” 32 years old, non-mother. | ||| | Shifting domestic and caregiving roles | “When I cannot get out of bed and my husband has to do everything.” 45 years old, mother. | 2 (1.5) | | | 4. Ripple Effects on Family Functioning and Social Connections | 23 (17.3) | || | No impact | “I am lucky as I have been able to continue daily activities through any pelvic pain, so no real impact I can think of.” 50 years old, mother. | 9 (6.8) | | | “No impact” 38 years old, mother. | ||| | Disruptions in daily living and household management | “I sometimes struggle to do household chores.” 24 years old, non-mother. | 9 (6.8) | | | “Inability to work or do basic household tasks like lift washing or heavy plates.” 27 years old, non-mother. | ||| | Shifts in social engagement and relationship strain | “There are multiple days though out the year where I have to cancel plans with family and friends as I’m in too much pain to do anything.” 42 years old, non-mother. | 15 (11.3) | | | “Mood swings can make life unpleasant for others especially when I am really weepy.’ 51 years old, mother. | ||| | “Unable to look after Mum as well as I’d like to.” 37 years old, non-mother. | ||| | “They are sick of me being in pain and don’t understand why I can feel sick so often.” 27 years old, non-mother | Theme 1: Endometriosis can affect family life from before conception Early family planning decision-making influenced by medical advice Pain and infertility derail parenthood plans Challenges in conception Theme 2: Parents and children experience functional and emotional consequences Challenges in parenting When children witness parental suffering Theme 3: Endometriosis is a source of struggle for romantic relationships Strain on sexual intimacy Challenges in forming and sustaining empathetic partnerships Shifting domestic and caregiving roles Theme 4: Ripple effects on family functioning and social connections Disruptions in daily living and household management Shifts in social engagement and relationship strain

Strengths and limitations Clinical implications

Ethical considerations Consent to participate Consent for publication Declaration of conflicting interests Funding ORCID iDs Data availability statement

Cite Cite Cite Download to reference manager If you have citation software installed, you can download citation data to the citation manager of your choice Information, rights and permissions Information Published In

Data availability statement Authors Author contributions Metrics and citations Metrics Journals metrics This article was published in Journal of Health Psychology. View All Journal MetricsPublication usage* Total views and downloads: 119 *Publication usage tracking started in December 2016 Altmetric See the impact this article is making through the number of times it’s been read, and the Altmetric Score. Learn more about the Altmetric Scores Publications citing this one Receive email alerts when this publication is cited Web of Science: 0 Crossref: There are no citing articles to show. Figures and tables Figures & Media Tables View Options View options PDF/EPUB View PDF/EPUBAccess options If you have access to journal content via a personal subscription, university, library, employer or society, select from the options below: loading institutional access options Alternatively, view purchase options below: Purchase 24 hour online access to view and download content. Access journal content via a DeepDyve subscription or find out more about this option.