Experience of care for mental health problems in the antenatal or postnatal period for women in the UK: A systematic review and meta-synthesis of qualitative research

Archives of Women’s Mental Health

Odette Megnin-Viggarsa, Iona Symingtona,b, Louise M Howardc, and Stephen Pillinga,b

aNational Collaborating Centre for Mental Health, Royal College of Psychiatrists

bResearch Department of Clinical, Educational and Health Psychology, University College London

cSection of Women’s Mental Health, Health Service and Population Research Department, King’s College London

Correspondence to: O Megnin-Viggars

Appendix: Experiences of care for women with mental health problems in pregnancy or the postnatal period

Dimensions of person-centred care / Key points on a pathway of care
Access / Information and support / Assessment and referral / Primary care / Therapeutic intervention / Assessment and referral to inpatient care / Hospital care / Discharge/ transfer of care
Involvement in decisions and respect for preferences / Barriers to access: Lack of cultural sensitivity and respect for preferences (Wittkowki et al., 2011). / Treatment information: Lack of involvement in treatment decisions provoked fear and feelings of powerlessness (Robertson & Lyons, 2003).
Post-diagnosis information and support: Lack of post-diagnosis information confusing (Shakespeare et al., 2006). / Barriers to disclosure: Lack of service user awareness and self-referral (de Jonge, 2001; Edge, 2007/Edge, 2008/Edge & Rogers, 2005); Social imperatives to minimise feelings (Edge, 2007/Edge, 2008/Edge & Rogers, 2005); Self-fulfilling prophecy of label (Edge, 2007/Edge, 2008/Edge & Rogers, 2005); Concern about perceptions of risk of infanticide (Hall, 2006).
Experience of diagnosis: Treatment of label not individual (McGrath et al., 2013). / Treatment options: Antidepressants perceived as only option (Chew-Graham et al., 2009; Turner et al., 2008). / Desired intervention: Individualized treatment (Edge, 2011); Multicultural group-based therapy (Edge, 2011).
Experience of antidepressants: Good rapport with GP=positive experience of antidepressants (Turner et al., 2008); Concerns about dependence motivated self-regulation of dosage (Turner et al., 2008).
Experience of listening visits/talking therapies: Frustration with non-directive approach (Shakespeare et al., 2006; Slade et al., 2010); Individualized treatment valued (Turner et al., 2010).
Perception of antidepressants: Stigmatising (Boath et al., 2004; Patel et al., 2013; Shakespeare et al., 2006; Turner et al., 2008); Worries about dependence (Boath et al., 2004; Chew-Graham et al., 2009; Edge, 2007/Edge, 2008/Edge & Rogers, 2005; Patel et al., 2013; Turner et al., 2008); Sedative and breastfeeding concerns (Edge, 2007/Edge, 2008/Edge & Rogers, 2005; Turner et al., 2008); Concern about long-term harm (Boath et al., 2004; Patel et al., 2013); Antidepressants only advocated for severe cases or second line of treatment (Edge, 2011); Antidepressants advocated in crisis and while waiting for psychological intervention (Patel et al., 2013); Antidepressant prescription interpreted as sign that not coping and fears about baby being taken away (Templeton et al., 2003); Lack of continuity of care made women unwilling to take antidepressants (Turner et al., 2008).
Perception of talking therapies: Ambivalence about talking therapies (Edge, 2007/Edge, 2008/Edge & Rogers, 2005); Perception of positive therapeutic benefits (Edge, 2007/Edge, 2008/Edge & Rogers, 2005; Heron et al., 2012 [as second line of treatment]).
Perception of support group: Perceived as undesirable due to social vulnerability (Heron et al., 2012).
Professional-service user relationship: Lack of involvement in treatment decisions (Heron et al., 2012); Collaboration and individualized treatment appreciated (Shakespeare et al., 2006); Lack of trusting relationship with healthcare professional (McGrath et al., 2013); Positive relationships with healthcare professionals characterized by hope, empathy, flexibility and responsiveness (McGrath et al., 2013)
Treatment preferences: Antidepressants preferred over counselling when informal social support available (Turner et al., 2008); Counselling preferred over antidepressants when informal social support unavailable (Turner et al., 2008) / - / Experience of obstetric emergency care: Desire to engage with clinical decision-making (Snowdon et al., 2012); Satisfied with staff making decisions (Mapp, 2005; Mapp & Hudson. 2005); Lack of control (Mapp, 2005; Mapp & Hudson. 2005; Nicholls Ayers, 2007; Thomson Downe, 2008, 2013); Long term effect of lack of control (Snowdon et al., 2012); Negative experiences of physical restraint (Nicholls Ayers, 2007); Positive experience of touch as humanising (Mapp, 2005; Mapp & Hudson. 2005).
Professional-service user relationship: Indirect conflict with healthcare professionals ignoring service user requests (Nicholls Ayers, 2007); Language barriers and lack of communication (Templeton et al., 2003). / Desired intervention: Post-discharge support to give practical advice on caring for baby (Heron et al., 2012).
Clear, comprehensible information and support for self-care / - / Unmet need for information and support: Gaps filled by self-initiated information seeking (McGrath et al., 2013); Lack of mental health information and support for teenage mothers (de Jonge, 2001); Need for information and support (Hall, 2006); Need for information tailored to treatment stage (Heron et al., 2012). / - / - / - / - / Information and support during traumatic birth: Inadequate and/or inaccurate information (Nicholls & Ayers, 2007).
Post-miscarriage information and support: Need for information about the stages and process of miscarriage (Simmons et al., 2006; Tsartsara Johnson, 2002); Need for follow-up support (Simmons et al., 2006; Tsartsara Johnson, 2002). / -
Emotional support, empathy and respect / Barriers to disclosure: Fear of how healthcare professionals would perceive them (Chew-Graham et al., 2009); Lack of trusting relationship with healthcare professional (Cooke et al., 2012; Edge, 2011; Raymond, 2009); Guilt induced by judgemental attitude of heathcare professional (Stanley et al., 2006) / - / Experience of diagnosis: Label reassuring (Edwards & Timmons, 2005; Hanley & Long, 2006; McGrath et al., 2013; Patel et al., 2013); Process reassuring (Hanley & Long, 2006); Stigma of label (Patel et al., 2013).
Professional-service user relationship: Healthcare professionals not willing to listen (Edge, 2007/Edge, 2008/Edge & Rogers, 2005); Lack of post-diagnosis support (Shakespeare et al., 2006). / Feeding information and support: Sensitive to eating disorder (Stapleton et al., 2008).
Professional-service user relationship: Trusting relationship with healthcare professional impacted upon feelings of isolation (Stanley et al., 2006); Feeding support in form of personal story appreciated (Stapleton et al., 2008); Lack of compassionate feeding support (Stapleton et al., 2008); Good rapport = positive experience (Cooke et al., 2012); Poor rapport = negative experience (Cooke et al., 2012; Smith & Gibb, 2007). / Experience of antenatal support group: Peer relationships reduced social isolation (Breustedt Puckering, 2013); Improvement in mood (Breustedt Puckering, 2013); Opportunity for beginning mother-infant relationship (Breustedt Puckering, 2013); Wish for continued involvement in intervention and provision of further groups (Breustedt Puckering, 2013).
Experience of listening visits: Good to access support outside the family (Turner et al., 2010).
Professional-service user relationship: Trusting relationship with healthcare professional enabled honest communication during listening visits (Turner et al., 2010); Healthcare professionals who were kind, non-judgemental and understanding enabled honest communication during listening visits (Turner et al., 2010); Opportunity to talk to professional independent from primary care valued= greater confidentiality (Turner et al., 2010); Good rapport = positive experience (Smith & Gibb, 2007). / - / Desired information and support for women experiencing termination of pregnancy following diagnosis of fetal abnormalities: Preparation for seeing and holding the dead baby (Hunt et al., 2009); Preparation for funeral/cremation decision (Hunt et al., 2009); Opportunity to have photographs and hand/footprints (Hunt et al., 2009); Importance of individualized treatment (Hunt et al., 2009).
Experience of protocols following stillbirth: Importance of having time with stillborn baby (Ryninks et al., 2014); Spending time with baby valued as opportunity to form memories (Ryninks et al., 2014); Seeing as a process of acceptance (Ryninks et al., 2014); Most mothers satisfied with decision about seeing or holding (Ryninks et al., 2014); Importance of being prepared for seeing baby (Ryninks et al., 2014); Need for individualized treatment (Ryninks et al., 2014).
Experience of obstetric emergency: Communication with midwife acted as a "safety net" (Mapp, 2005; Mapp & Hudson, 2005); Lack of communication during crisis and post-birth was disconcerting and dehumanising (Mapp, 2005; Mapp & Hudson, 2005; Nicholls & Ayers, 2007; Snowdon et al., 2012); Post-birth information valued (Snowdon et al., 2012); Longer term effects of lack of debriefing (Mapp, 2005; Mapp & Hudson, 2005; Snowdon et al., 2012); Lack of trusting relationship with healthcare professional (Nicholls & Ayers, 2007; Thomson Downe, 2008); Focus on babies over mothers (Thomson Downe, 2013).
Information and support following miscarriage or stillbirth: Need for healthcare professionals to acknowledge that pregnancy loss is traumatic and not routine for service users (McCreight, 2008; Simmons et al., 2006); Dissatisfaction with medicalisation of miscarriage (McCreight, 2008; Simmons et al., 2006); Positive professional-service user relationships characterized by empathy and being able to spend as much time as needed in consultation (Tsartsara Johnson, 2002); Negative professional-service user relationships characterized by a lack of empathy (McCreight, 2008); Opporunity afforded by specialist care for individualized treatment made women feel valued (Tsartsara Johnson, 2002).
Professional-service user relationship: Women appreciated opportunity to discuss problems with healthcare professionals (Antonysamy et al., 2009) / -
Fast access to reliable health advice / System barriers: Difficulty getting GP appointment (Turner et al., 2008).
Lack of information about services available: Isolated and desperate for support (Wittkowki et al., 2011) / Barriers to access: Lack of service user awareness (Hanley & Long, 2006).
Professional-service user relationship: Compassionate information and support = understanding of disorder (Boath et al., 2004).
Experience of post-diagnosis information: Variations in how well informed women were (Slade et al., 2010). / - / Barriers to access: Lack of awareness about available support (Templeton et al., 2003). / - / - / Access to healthcare professionals: Unmet need for greater access to doctors and nurses in a psychiatric mother and baby unit (Antonysamy et al., 2009); Perception of continuous accessibility and availability was reassuring for women following miscarriage (Tsartsara Johnson, 2002). / -
Effective treatment delivered by trusted professionals / Access to profesisonals: Uncertainty about role of health visitor (Chew-Graham et al., 2009; Shakespeare et al., 2006; Slade et al., 2010); Crisis as eligibility criteria (Cooke et al., 2012).
Barriers to access: Health professional too busy to address psychological needs (Edge, 2011; Edwards & Timmons, 2005; Wittkowki et al., 2011); Health visitor focus on babies over mothers (Edge, 2011; Edge, 2007/Edge, 2008/Edge & Rogers, 2005); Lack of professional knowledge (Edge, 2007/Edge, 2008/Edge & Rogers, 2005; Stapleton et al., 2008); Language barriers and lack of childcare (Templeton et al., 2003); Unavailability and lack of cultural sensitivity (Edge, 2007/Edge, 2008/Edge & Rogers, 2005)
Barriers to disclosure: Fears about baby being taken away (Ayers et al., 2006; Cooke et al., 2012; de Jonge, 2001; Edge, 2007/Edge, 2008/Edge & Rogers, 2005; Edwards & Timmons, 2005; Hall, 2006; Hanley & Long, 2006; McGrath et al., 2013); Fears about being seen as a bad mother (Turner et al., 2010; Wittkowski et al., 2010); Fears about being seen as not coping (Raymond, 2009; Thurtle, 2003); Shame about not living up to society's positive expectations for this period (Stanley et al., 2006); Focus on baby over mother (Raymond, 2009; Turner et al., 2010); GP role restricted to physical care (Parvin et al., 2004); Health visitor role restricted to physical care (Cooke et al., 2012; Parvin et al., 2004); Healthcare professional too busy to address psychological needs (Parvin et al., 2004; Stanley et al., 2006; Turner et al., 2010); Stigma of label (Edwards & Timmons, 2005; McGrath et al., 2013).
Disclosure and help-seeking: Only sought in crisis and from the most accessible healthcare professional (Patel et al., 2013); Present with physical symptoms resulting from emotional problems (Parvin et al., 2004).
Difficulty in having illness recognised: Delay in receiving treatment/services (Edwards & Timmons, 2005).
Lack of individualized treatment: Leaflet-driven and formulaic (Edge, 2011).
Professional-service user relationship: Interactions dominated by risk assessment (Cooke et al., 2012); Healthcare professional not willing to listen (Chew-Graham et al., 2009; Stanley et al., 2006).
System barriers: Difficulty getting GP appointment (Chew-Graham et al., 2009).
Treatment options: Antidepressants perceived as only option (Edge, 2011; Edge, 2007/Edge, 2008/Edge & Rogers, 2005; Turner et al., 2010); Restricted treatment options (Cooke et al., 2012).
Unmet need: GP role in detecting and treating emotional problems (Parvin et al., 2004). / Experience of information and support: Leaflet-driven (Templeton et al., 2003); Support helped to alleviate anxiety (Smith & Gibb, 2007).
Desired information and support: Information about services available (Wittkowki et al., 2011); Culturally sensitive (Wittkowki et al., 2011). / Barriers to disclosure: Fears about baby being taken away (Hall, 2006; Shakespeare et al., 2003; Slade et al., 2010); Fears about being seen as not coping (Shakespeare et al., 2006); Lack of trusting relationship with healthcare professional (Slade et al., 2010); Label has connotations of greater severity (Cooke et al., 2012).
Experience of diagnosis: Closed questions restrictive (Shakespeare et al., 2003); Format makes disclosure easier (Shakespeare et al., 2003); Intrusive and frustrating (Shakespeare et al., 2003); Opportunity to focus on mothers' needs welcomed (Slade et al., 2010); Health professional too busy to address psychological needs (Shakespeare et al., 2003); Lack of pre-diagnosis information (Shakespeare et al., 2003); Lack of follow-up (Shakespeare et al., 2003); Lack of post-diagnosis information and support (Shakespeare et al., 2003); Post-diagnosis information and support valued (Shakespeare et al., 2003).
Professional awareness and understanding: Lack of professional knowledge (Robertson & Lyons, 2003).
Suggested improvements: Early assessment and intervention (Wittkowski et al., 2011). / Experience of care: Benefits of disclosure to health visitor (Hanley & Long, 2006).
Experience of intervention: Satisfied with antidepressants and GP care (Hanley & Long, 2006).
Experience of service: Practical help and support (Smith & Gibb, 2007).
Professional-service user relationship: Lack of post-diagnosis information and support from health visitor (Templeton et al., 2003); Practical help and support from health visitor valued (Templeton et al., 2003).
Treatment options: Perception of restricted treatment options (Chew-Graham et al., 2009). / Barriers to accessing counselling: Waiting lists (Edge, 2007/Edge, 2008/Edge & Rogers, 2005); Lack of childcare (Edge, 2007/Edge, 2008/Edge & Rogers, 2005; Turner et al., 2008).
Compliance with antidepressant treatment: Self-regulated frquency and dosage, in part because of side effects (Boath et al., 2004).