Caregiver–child separation during tuberculosis hospitalisation: a qualitative study in South Africa

Abstract

There are an estimated 32,000 incident cases of multidrug-resistant tuberculosis in children globally each year. Extended hospitalisation is often required to ensure optimal adherence to the complex multidrug-resistant tuberculosis treatment regimen. Hospitalisation usually results in caregiver–child separation which is known to cause psychological difficulties in children. We explored caregivers’ and health workers’ perceptions of the effects of caregiver–child separation during hospitalisation for tuberculosis in the Western Cape. We conducted semi-structured interviews with health workers (n = 7) and caregivers (n = 14) of children who were receiving multidrug-resistant tuberculosis treatment. All interviews were audio-recorded, transcribed, and translated. We used thematic analysis to organise and interpret the data. We identified three themes: (1) multidrug-resistant tuberculosis treatment was a distressing experience for children, caregivers, and health workers; (2) children’s behavioural states during and post-hospitalisation (e.g., crying, aggression, hyperactivity, and withdrawal) were suggestive of their distress; and (3) caregivers and health workers used strategies, such as deception, threat, and the prioritisation of biomedical health over psychological health as a means to manage their own as well as the children’s distress. This article presents novel research on the dynamics involved in caregiver–child separation as a result of multidrug-resistant tuberculosis treatment in South Africa. We highlight that the challenges of caregiver–child separation intersected with predisposing factors related to the social adversity that families affected by childhood tuberculosis experience. Delivery models that facilitate outpatient community-based care should be prioritised and a more structured form of psychological support should be implemented for those who still require hospitalisation.

Keywords

Attachment maternal deprivation MDR-TB paediatric South Africa

There are an estimated 32,000 incident cases of multidrug-resistant tuberculosis (MDR-TB) in children globally each year (Jenkins et al., 2014). The Western Cape has a particularly high paediatric MDR-TB burden with approximately 5% of children with culture-confirmed TB at a provincial referral hospital (Tygerberg Children’s Hospital [TCH]) having MDR-TB, and an additional number of children treated for probable (clinically diagnosed) MDR-TB each year (Schaaf et al 2016).

In many contexts around the world, treatment of MDR-TB in children requires multidrug regimens for duration of 15–18 months with at least five second-line TB medications that are poorly palatable and more toxic than first-line medications (World Health Organization, 2014). Until recently, this has usually included treatment with a second-line injectable that must be administered by daily intramuscular or intravenous injection for up to 6 months (Seddon et al., 2018). Although there is limited published data, the majority of children globally treated for MDR-TB receive all or a substantial part of their treatment in a hospital setting, to facilitate administration of the daily injectable and to facilitate an environment of optimal adherence with generally complex regimens.

In the Western Cape, children with MDR-TB are also hospitalised to mitigate against social challenges affecting optimal adherence in the child’s home environment. Children with MDR-TB in the Western Cape are often admitted to Brooklyn Chest Hospital (BCH) for 2–6 months. Thereafter, when the children are clinically stable, they are discharged and receive care at their local primary health service facility (Seddon et al., 2014). In some instances, children with MDR-TB may be hospitalised for 6 months or longer due to more complicated social challenges (SA Medical & Education Foundation, 2012). In many settings, like the Western Cape, hospitalisation for MDR-TB treatment results in separation of the child from their primary caregivers for extended periods.

One lens through which to understand child–caregiver separation is ‘attachment theory’. Below, we briefly describe ‘attachment theory’ and its application in contexts of child–caregiver separation during long-term hospitalisation as well as its applicability to the South African context. We then summarise the limited literature on caregiver–child separation in the context of MDR-TB treatment.

Theoretical framework: attachment theory’s approach to caregiver–child separation

Research on the effects of mother–child separation began in the 1940s with the work of John Bowlby. One of Bowlby’s (1951) key projects was to write a report for the WHO on the effects of being homeless or orphaned after World War II on children’s well-being. Bowlby concluded that early disruptions in the mother–child relationship that are prolonged or without an alternative emotional substitute can result in long-term psychological difficulties (Van der Horst, 2001).

Later, in collaboration with Robertson, Bowlby observed that children (aged between 6 months and 4 years) responded to caregiver–child separation according to a recognisable pattern of distress namely: protest, despair, and detachment (see, Robertson & Bowlby, 1952). In the first phase, children cried loudly in attempt to reunite with their caregivers. Thereafter, children were withdrawn because they were mourning the loss of their caregivers. In the third phase, children appeared more sociable. Bowlby argued that in the third phase, children were detaching emotionally to cope with the emotional pain of their need for caregiver comfort not being met (Van der Horst, 2001).

In more recent research, caregiver–child separation has been associated with the development of an insecure (Moss et al., 2005) and a disorganised attachment style in children (Solomon & George, 2011). The children are behaving in way that appears fearful and disoriented (Solomon et al., 2017). Disorganised attachment develops from the simultaneous yet conflicting activations of an infant’s motivational system governing attachment (care-eliciting) and motivational system governing survival (fight-or-flight; Liotti, 2017). The child experiences a dilemma: the person from whom they are seeking care is also the source of fear, thus eliciting a fight-or-flight response. More recently, the deleterious effects of separation on young children has been vividly shown in a series of studies on the impact of institutionalisation. In Romania, a history of institutionalism has been associated with higher levels of internalising disorders (e.g., depression and anxiety disorders) and externalising disorders (e.g., oppositional defiant disorder and conduct disorder), attention-deficit hyperactivity disorder, and a host of other negative outcomes (Humphreys et al., 2015). Valtolina and Colombo (2012) highlighted the effects of caregiver–child separation on children’s development in the context of economic migration. Such effects included increased interpersonal conflicts, anxiety, low self-esteem, depressive tendencies, loneliness, and substance abuse.

Attachment theory in the South African context

Attachment theory was developed in a middle class context in Europe and North America and therefore extrapolation to other contexts, such as South Africa, needs to be considered carefully. Tomlinson (1997) suggests that, rather than abandoning the use of attachment theory altogether, researchers should critically explore the effects of predisposing factors (e.g., cultural practices) within each context on children’s attachment to their caregivers. For example, Tomlinson et al. (2005) anticipated lower rates of secure attachment in a low-resourced setting within Khayelitsha (a peri-urban settlement in the Western Cape) than in many cross-cultural studies of caregiver–child attachment (see, Van Ijzendoorn & Sagi, 1999) because of high levels of socio-economic adversity and high levels of postpartum depression known to influence the caregiver–child relationship. Unexpectedly, Tomlinson et al. (2005) found that rates of secure attachment were consistent with other studies in low- and middle-income countries. Tomlinson et al. (2005) speculated that caregivers might have been more likely to be responsive to their children’s needs because many lived in single-room homes resulting in caregivers and their children being in close proximity throughout the day.

Caregiver–child separation during long-term hospitalisation for MDR-TB

While there has been some research on attachment theory in the South African context, to our knowledge, none has been applied to understanding the effects of long-term hospitalisation for MDR-TB. The psychological effects of MDR-TB treatment in the Western Cape have been highlighted more generally; Franck et al. (2014) explained that children experienced psychosocial distress because of the adverse side effects and the high pill burden. In addition, Loveday et al. (2018) also listed caregiver–child separation as a precipitating factor of children’s distress during MDR-TB treatment. In a study from the same setting as reported on here, Zimri et al. (2020) suggest that adolescents with MDR-TB may experience many more psychological consequences than previously reported. We aimed to extend this limited literature by exploring the psychological effects of caregiver–child separation during MDR-TB treatment. We adopted a critical approach to attachment theory as a means to interpret our findings.

Method

This qualitative research study was nested within an observational cohort study of children treated for MDR-TB (MDR PK2 study). The MDR PK2 study enrolled children 0–17 years of age, routinely treated for MDR-TB in the Western Cape province, South Africa, from 2016 to 2019, to examine second-line TB drug pharmacokinetics, safety, and outcome (Garcia-Prats, 2016).

Participants

Our sample included caregivers of children (aged 0–5 years), who were hospitalised for MDR-TB, as well as MDR-TB health workers. We recruited all caregivers of children who were hospitalised at BCH or who were attending follow-up appointments at TCH during the period of data collection (April–August 2018) as well as caregivers of children who had completed MDR-TB treatment in the previous year. We recruited health workers who had experience working with children (aged 0–5 years) who had been hospitalised for MDR-TB at BCH.

We aimed to recruit participants until we reached data saturation. As interviews progressed, we started observing a repetition of ideas shared by participants and felt comfortable to stop new recruitment at 21 participants. We felt confident that we had reached saturation at 21 participants, when the interviews became repetitive and participants no longer relayed novel information. The sample size of 21 participants was also consistent with similar studies.

Interview guide

We used a semi-structured discussion guide as our main tool for collecting data. The discussion guide comprised open-ended questions which covered a broad range of topics including: (1) background information of the child and their family (e.g., ‘please tell me more about your family history’); (2) the child’s relationship to their caregiver(s) (e.g., ‘how has your relationship with your child been affected by their being in hospital?’); and (3) caregivers’ perceptions of caregiver–child separation during hospitalisation (e.g., ‘when you visit the hospital, how does your child respond to your arrival?’).

Procedure

Three graduate research assistants working at the Desmond Tutu TB Centre (DTTC) at Stellenbosch University (Western Cape, South Africa) collected the data for this project. The research assistants received training in ethical principles and research skills (interviewing techniques as well as transcription and translation skills) through the DTTC. We conducted the interviews using a discussion guide in the participants’ chosen language (English, Afrikaans, or Xhosa). Each interview lasted between 45 and 90 minutes and took place in a private room at the hospital (TCH or BCH). All interviews were audio-recorded, transcribed verbatim, and then translated into English.

Ethical considerations

This study was approved by the Health Review Ethics Committee at Stellenbosch University (S17/10/238). All participants agreed to participate and signed an informed consent document (in their chosen language – English, Afrikaans, or Xhosa). We anonymised all data presented publicly by replacing all identifiers with pseudonyms.

Data analysis

We used Braun and Clarke’s (2006) six phases of thematic analysis as a means to organise and interpret the data. These steps included an interactive process of reading the transcripts and searching for codes which were then organised into larger categories known as themes. The analysis was conducted in ATLAS.ti (version 8; 2019).

To ensure rigour of the data, we implemented the qualitative research measures of credibility, transferability, dependability, and confirmability (Lincoln & Guba, 1985). We used a two-stage analysis process to increase the credibility of the study. We adjusted data collection tools and analytic techniques for the second stage of data collection and analysis based on lessons learnt from the preliminary analysis of five interviews (Glaser & Strauss, 1967; Tracy, 2010). We included an audit trail of all relevant documents, frequently monitored by senior research staff, to ensure dependability (Tracy, 2010). An extensive reading of the literature as well as a regular critical engagement between co-authors and colleagues about the themes warranted that our interpretation of the data represented participants’ perceptions of caregiver–child separation (Nowell et al., 2017).

Results

Sample characteristics

In total, we interviewed 14 caregivers and seven health workers (Table 1). The median age at hospital admission for MDR-TB treatment was 2 years (interquartile range [IQR] 1 year). The median duration of hospitalisation was 3 months (IQR 5 months; Table 2).

Table 1.

Characteristics of health care workers and caregivers of children treated in a hospital setting for MDR-TB.

		Gender
		Male	Female
Health workers	Clinical nurse		3
	Research nurse		2
	Research counsellor		1
	Social worker	1
Caregivers	Parent	3	11
Total		4	17

Table 2.

Features of caregiver–child separation during hospitalisation for MDR-TB.

Age at admission (years)	n	Total duration of separation (months)					Re-admission
Age at admission (years)	n	0	⩽ 1	1–6	6–12	⩾ 12	Yes	No
⩽ 1	4	0	0	2	1	1	2	2
2	7	1	2	4	0	0	0	7
3	1	0	0	1	0	0	0	1
4	1	0	1	0	0	0	0	1
Total	13	1	3	7	1	1	2	11

Themes

We identified three themes specifically relating to caregivers’ and health workers’ perceptions of the effects of caregiver–child separation (Table 3).

Table 3.

Themes and sub-themes.

Theme	Sub-theme
1. Distress during MDR-TB treatment	1.1 Challenges with the medication1.2 Distress from caregiver–child separation
2. Children’s behavioural and emotional responses to MDR-TB treatment	2.1 Frequent crying2.2 Aggression2.3 Hyperactivity2.4 Withdrawal
3. Behavioural and emotional management strategies	3.1 Deception3.2 Threat3.3 Prioritisation of biomedical health over psychological health

Theme 1: distress during MDR-TB treatment

Challenges with the medication

Caregivers and health workers attributed the distress resulting from the medication to the adverse effects of the medication (e.g., nausea) and the administration of the injection. Pumi, mother to twins (Nomble and Ntombentsha), described the adverse effects that her children experienced while on MDR-TB medication:

It’s when I have been seeing them [it is] as if they are disabled [. . .] They have radically changed the colour, while they are now taking up the treatment. They are different people – they seem to be like staggering. (Admitted at 2 years of age; hospitalised for 6 months)

Connie, mother of Nicolette described the traumatic experience of administering the injection. She said:

When she [referring to her daughter] sees the name [of the medication] then I have to hold her down. Then she cries. Sometimes when I hold her down then she says: ‘Don’t mommy mommy don’t keep me let me go mommy, mommy the aunty is hurting me. Sometimes, she swears’. (Admitted at 2 years of age; hospitalised for 1 month)

Distress from caregiver–child separation

Caregivers described feeling sad, stressed, anxious, and guilty for leaving their children alone in the hospital. Health workers described their experience of caring for children who were separated from their caregivers as overwhelming. Caregivers and health workers reported that children at BCH struggled to cope with the separation from their caregivers during in-patient treatment. The children’s struggle was seen through frequent crying and a refusal to eat.

A health worker, Noliswa, briefly addressed children’s responses to separation. She said: ‘They are depressed – crying non-stop. They can’t sleep. Like you can see, they feel sick inside’ (female, health worker). Another health worker, Wendy, described caregivers’ responses to the doctor’s feedback that their children had to be hospitalised for a long term. She said:

No hysterical, most of them. [. . .] Some people cry. Some people I saw people fall on ground [. . .]. I see people say: ‘no there’s no way you [are] going to do this we [are] not leaving our child’. (Female, health worker)

Theme 2: children’s behavioural and emotional responses to MDR-TB treatment

Frequent crying

Caregivers and health workers highlighted particular events during MDR-TB treatment that triggered children’s crying: the first week of hospitalisation, visits from caregivers, weekends at home, and returning home after discharge. A health worker, Noliswa, described how children reacted to their caregiver’s departure on admission day. She said: ‘Yoh, it’s a drama! [laughs] Why they cry some of them! Some of them cry until they sleep’ (female, health worker).

Aggression

Caregivers and health workers explained that children displayed aggressive behaviours (such as hitting, swearing, and biting) towards their peers at BCH as well as their family members. Later, Wendy, describes children’s aggressive behaviours:

Interviewer: How is the children’s relationship with each other what would you, is there anything interesting that you notice?

Wendy: Yes, in the beginning they [are] fighting. They [are] hurting each other. I must say sometimes blood is flowing. (Female, health worker)

Furthermore, caregivers and health workers described that the children rejected their caregivers during visitations and after hospital discharge. Some caregivers understood this behaviour as children harbouring anger towards them. Sally explained that Stephanie rejected her. She said:

Sally: Yes, she of course knew me that time when, then she wanted nothing to do with me.

Interviewer: Do you think she is mad at you?

Sally: I think so, because she didn’t see my face for a week or so. (Admitted at 1 year of age; hospitalised for 6 months; hospitalised twice)

Hyperactivity

Hyperactivity became an increased concern for caregivers and health workers after children had spent a prolonged period in hospital. Health workers and caregivers reported that children were active and did not concentrate easily specifically when the child went home for weekend visits and at home after hospital discharge. Wendy also described that one of the caregiver’s labelled her son’s behaviour as hyperactive (admitted at 2 years of age; hospitalised for 1 month). She said:

She personally told me that she would have wanted to be with him every day but now that was mos [just] now [sic] not possible. And he was, he started, his behaviour changed in a sense that, in the sense that, his mom said he was like more ‘hyper’ and more naughty. (Female, health worker)

In addition, a caregiver, Chantal, explained that her child, Gerald, was so difficult to manage during his first weekend visit at home that she took him back to BCH before the end of the weekend. She said:

‘That day my child was naggy, he was hysterical, he ran up and down I didn’t know what to do’ (admitted at 1 year of age; hospitalised for 3 months).

Withdrawal

Caregivers and health workers described observing that some children became withdrawn while hospitalised at BCH. Children would sit alone, remain quiet for prolonged periods or stare blankly. Ingrid stated that her daughter, Evelyn, isolated herself at BCH. She said:

She will just sit and look. This is one that is speechless because when I now go to her this afternoon then I peek through the window then I see everyone talks . . . it’s just her that sits and stares. (Admitted at 2 years of age; hospitalised for 3 months)

Some health workers, such as Molly, highlighted that the withdrawn behaviour was associated with caregiver–child separation. Molly said: ‘Yah, yah if the mom doesn’t visit regularly the child misses the mom, you can see in the behaviour they just withdrawn, they crying, they agitated [sic], you know things like that’ (female, health worker).

Theme 3: behavioural and emotional management strategies

Deception

Caregivers reported that they would deceive their children by leaving the hospital without saying goodbye as a strategy to reduce their own and their children’s distress. A caregiver, Ingrid, who is the mother of Evelyn, reflected on how she ‘never said that I am going home. I just told the doctor and the other nurse but [that] I will now go home otherwise [. . .] she cries again’ (admitted at 2 years of age; hospitalised for 3 months).

Similarly, health workers explained that often clinic staff purposefully omitted information about caregiver–child separation when describing the MDR-TB treatment procedures to caregivers to ensure that caregivers would bring their child to BCH for admission. A health worker, Renata, explained that clinic staff deceived caregivers. She said:

I think for, most of them, it’s it’s it’s traumatic [. . .] Sometimes it’s so bad that they [nurses at the clinic] on the other side don’t tell them that the child is going to stay here for such a long time, they just say, they [are] coming [sic] to see the doctor. (Female, health worker)

Threat

After discharge, when children were hyperactive or crying excessively, caregivers explained that as a form of punishment, they threatened to send their children back to BCH. Health workers described threatening children with not going home for weekends or with an additional injection if they did not take their medication or eat their food which is important to ensure successful treatment outcomes. Noliswa, recalls what she usually says to children at BCH. She says, ‘‘If you don’t finish your food, you [are] not gonna go [home] for weekend’ [laughs] . . . or . . . I say: ‘I’m gonna give you injection’ [laughs] I hold the syringe here with water [laughs]’ (female, health worker).

In addition, health workers threatened caregivers that it constitutes an act of abuse if they do not admit their children to BCH for treatment. Wendy, describes what health workers would say to caregivers who were concerned about admitting their children to hospital long-term. She says: ‘He [referring to a health worker] will [tell] them: ‘It’s actually abuse’ because he will, yah, you take the right away of the child to health care’ (female, health worker).

Prioritisation of biomedical health over psychological health

When asked to describe children’s behavioural and emotional responses to MDR-TB treatment, caregivers highlighted biomedical changes. The interviewers asked Jimmy if there were any changes in Jerome’s emotional state or behaviour after hospitalisation and Jimmy responded: ‘Yes but then his chest started again – just constantly threw up every time, thre- [threw] up’ (admitted at 3 years of age; hospitalised for 4 months).

In addition, caregivers only referred to negative, psychological changes in their children’s behaviours when they were not conceptualising these as responses to caregiver-child separation. When the researchers asked a caregiver, Chantal, to describe negative changes observed in her son, Gerald’s, behaviour during hospitalisation, she responded:

Like I said, I did my best. I was there, but I could not, because he, they must sometimes draw blood a needle [sic] must go in, he did cry. I could not be there because it was for his own good.

However, later when describing one of Gerald’s weekend visits at home, Chantal indirectly referred to negative, psychological changes in his behaviour. She said:

He was just, he was naggy and I took it I could not [sic]: ‘I cannot handle you because I don’t know, you are now at the moment, you’re another person’. (Admitted at 1 year of age; hospitalised for 3 months)

Discussion

This article presents novel research on the experiences of children who have been separated from their caregivers during hospitalisation for MDR-TB treatment. Our findings show that children, caregivers, and health workers experience distress associated with caregiver–child separation during hospitalisation. Caregivers’ and health workers’ ability to manage this cumulative distress appears constrained; instead they tended to compound matters through deception, threat and a misattunement to the psychological needs of the children.

Caregivers and health workers described observing similar behaviours at BCH to those documented in recent caregiver–child separation studies (such as anger and aggression, excessive crying, withdrawal, and hyperactivity; Humphreys et al., 2015; Valtolina & Colombo, 2012; Waddoups et al., 2019). Furthermore, reports of children’s behaviours at BCH correspond with the behaviours seen in Robertson and Bowlby’s protest–despair–detachment model (Van der Horst, 2001).

More recent research on the impact of attachment-related traumas on children’s development can contribute to an understanding of the behaviours of children who were hospitalised at BCH. According to Dutton (2011), children who experience a chronic activation of their attachment system due to a failure on the part of their caregiver to meet their needs, later develop a heightened arousal in response to threat. In turn, this contributes to poor impulse control and thus aggressive outbursts. Dutton’s (2011) description of the development of aggressive behaviours supports the findings in the current study that children at BCH who were hospitalised without their primary caregivers often displayed aggressive behaviours.

Erozkan (2016) argued that there is an association between types of childhood traumas and specific attachment styles. When children experience rejection by their caregivers in response to seeking care, children learn that they cannot trust that their caregivers will satisfy their needs (as seen in an insecure attachment pattern; Senior, 2009). Children at BCH may have rejected their caregivers upon reunion because they had learnt that their caregivers were unable to respond to their needs.

Children with a disorganised attachment style often have dissociative tendencies (Liotti, 2017; Solomon & George, 2011). The withdrawal seen in children at BCH can be understood as a form of dissociation – losing attention to cope with the stress of caregiver–child separation. On the other hand, dissociation in some children may take the form of impulsivity (D’Andrea et al., 2012). The hyperactivity observed in children at BCH might function as a strategy to detach from the intolerable situation of feeling abandoned or rejected by a caregiver.

The behavioural and emotional strategies of caregivers and health workers correspond with current literature. Caregivers’ and health workers’ responses of deception and threat may be considered adaptive response to reduce the amount of distress experienced by both caregivers and their children (Sanders, 2014). Caregivers might have left BCH without saying goodbye as a strategy to avoid prompting an emotional response from their children. In addition, caregivers’ and health workers’ use of threat can be understood according to an evolutionary framework. In the context of a threat to survival, a parent may attempt to control the actions of their child to ensure that their child is safe from immediate dangers (Barkow et al., 1992). Applying this perspective to the context of paediatric MDR-TB where there is an imminent risk to children’s survival, caregivers’ and health workers’ use of threat can be rationalised as a mechanism to keep their child alive, despite its costs.

We suggest that predisposing factors related to the social adversity that families affected by childhood TB experience contextualise the challenges experienced by children, caregivers, and health workers during MDR-TB treatment. Previous research conducted in South Africa indicated that exposure to violence and abject poverty contributed to the development of behavioural problems in children (e.g., aggression and anti-social behaviour; Wadesango et al., 2011). In the study mentioned previously, conducted by Tomlinson et al. (2005) in Khayelitsha, 25% of children were classified as having a disorganised attachment pattern. Predisposing factors contextualise the behavioural difficulties (e.g., frequent crying, aggression, hyperactivity, and withdrawal) seen in children who were hospitalised for MDR-TB.

In addition to the trauma of paediatric hospitalisation, predisposing factors such as the stressors of living in a low-resourced setting (e.g., exposure to violence and abuse), are likely to constrain caregivers’ capacities for providing emotionally sensitive caregiving. In low-income areas in South Africa, harsh parenting and denying infants’ negative psychological experiences have been seen as effective coping mechanisms to manage high levels of stress (Bain & Richards, 2016; Gould & Ward, 2015). For example, denying children’s negative psychological experiences can be seen as a strategy to train children that negative emotions are not useful in a context that is emotionally overwhelming with little psychological support (Bain & Richards, 2016).

Similar predisposing factors contribute to health workers’ experiences of distress in the context of caregiver–child separation during MDR-TB treatment. In a study conducted in KwaZulu-Natal, researchers observed health workers adopting strategies of threat and health workers prioritising their patients’ biomedical health over their psychological health (Petersen, 2000). Such observations mirror what was seen at BCH. Health workers may not have sufficient time to use positive caregiving strategies because they are over-worked and under-resourced (Petersen, 2000). In addition, the prioritisation of patients’ biomedical health over their psychological health may be due to a lack of training in the provision of mental health care and a lack of institutional resources to deal with the complexities and psychosocial components of treatment for paediatric diseases, including, for example, caregiver–child separation (Brandell & Ringel, 2007). Alternatively, this strategy may serve as a way to avoid or distance themselves from the overwhelming emotions that arise when working with sick children (Van Der Walt & Swartz, 2002).

Globally, caregiver–child separation remains common. For example, the hospitalisation and isolation of children with contagious diseases such as Ebola in the Democratic Republic of Congo (United Nations Children’s Fund, 2018). In addition, there were recent reports in South Africa of caregiver–child separation, whereby children were held for 3 months at the Department of Social Development after being smuggled across the border from Zimbabwe to be with their parents (Palmary, 2019). Little research has addressed the psychological effects of caregiver–child separation in these contexts. We believe that this work is of urgent priority and relevant to advocacy for secure, nurturing, and predictable environments allowing for healthy childhood development (Wartella, 2018).

There are some limitations to extrapolation from this study because it is an exploratory study with a small sample of qualitative data from a single health district. However, we suggest that this is sufficient evidence to warrant recommending further data collection.

Conclusion

Alongside advances in treatment regimens and drug formulations (see, for example, Unitaid, 2019), we suggest that this study is further evidence to also focus on MDR-TB service delivery implementation. This may include working with affected communities to develop low-cost interventions to mitigate the negative effects of hospitalisation when it is unavoidable. In the immediate term, we recommend a more structured form of psychological support to be implemented at BCH. For example, BCH could employ trained counsellors who are supervised by the on-site clinical psychologist and social workers. The counsellors can offer psychoeducation programmes such as strategies to manage the children’s distress in ways that do not exacerbate the trauma or invalidate necessary expressions of psychic pain. Counsellors can also routinely screen all children and caregivers for psychological distress to facilitate a referral process to appropriate services. Furthermore, we recommend structures to facilitate regular caregiver visitation. This may include re-imbursement for transport to and from the hospital or the re-introduction of the on-site residence for caregivers to stay at BCH.

Footnotes

Declaration of conflicting interests

The author(s) declared no potential conflicts of interest with respect to the research, authorship, and/or publication of this article.

Funding

The author(s) disclosed receipt of the following financial support for the research, authorship, and/or publication of this article: Research in this publication was supported by the National Research Fund, The Innovation Fund of the Department of Psychology at Stellenbosch University and The Eunice Kennedy Shriver National Institute of Child Health and Human Development (NICHD) of the National Institutes of Health and the South African Medical Research Council under award number R01HD083047 (AGP). The content is solely the responsibility of the authors and does not necessarily represent the official views of the National Research Fund or the National Institutes of Health.

ORCID iDs

Kyla A Meyerson

Graeme Hoddinott

References

ATLAS.ti. (2019) ATLAS.ti (version 8) [Computer software]. https://atlasti.com/

Bain

Richards

(2016). Mothers’ perinatal and infant mental health knowledge in a Johannesburg township setting. Journal of Child and Adolescent Mental Health, 28(2), 71–95. https://doi.org/10.2989/17280583.2016.1200585

Barkow

J. H.

Cosmides

Tooby

(1992). The adapted mind: Evolutionary psychology and the generation of culture. Oxford University Press.

Bowlby

(1951). Maternal care and mental health. Cambridge University Press.

Brandell

Ringel

(2007). Attachment & dynamic practice: An integrative guide for social workers & other clinicians. Columbia University Press.

Braun

Clarke

(2006). Using thematic analysis in psychology. Qualitative Research in Psychology, 3, 1–41. https://doi.org/10.1191/1478088706qp0630a

D’Andrea

Ford

Stolbach

Spinazzola

van der Kolk

B. A.

(2012). Understanding interpersonal trauma in children: Why we need a developmentally appropriate trauma diagnosis. American Journal of Orthopsychiatry, 82(2), 187–200. https://doi.org/10.1111/j.1939-0025.2012.01154.x

Dutton

(2011). Attachment and violence: An anger born of fear. In Shave

Mikulincer

(Eds.), Human aggression and violence: Causes, manifestations, and consequences (pp. 259–275). American Psychological Association.

Erozkan

(2016). The link between types of attachment and childhood trauma. Universal Journal of Educational Research, 4(5), 1071–1079. https://doi.org/10.13189/ujer.2016.040517

10.

Franck

Seddon

J. A.

Hesseling

A. C.

Schaaf

H. S.

Skinner

Reynolds

(2014). Assessing the impact of multidrug-resistant tuberculosis in children: An exploratory qualitative study. BMC Infectious Diseases, 14(1), 1–10. https://doi.org/10.1186/1471-2334-14-426

11.

Garcia-Prats

A. J.

(2016). Optimizing and operationalizing pediatric drug-resistant tuberculosis treatment (No. N15/02/012). https://grantome.com/grant/NIH/R01-HD083047-02

12.

Glaser

Strauss

(1967). The discovery of grounded theory: Strategies for qualitative research. Aldine De Gruyter.

13.

Gould

Ward

C. L.

(2015). Positive parenting in South Africa: Why supporting families is key to development and violence prevention. Policy Brief, 77(4), 1–8. https://doi.org/10.1080/00224545.1993.9712153

14.

Humphreys

K. L.

Gleason

M. M.

Drury

S. S.

Miron

Nelson

I. I. I. C. A.

Fox

N. A.

Zeanah

C. H.

(2015). Effects of institutional rearing and foster care on psychopathology. Lancet Psychiatry, 2(74), 625–634. https://doi.org/10.1126/scisignal.274pe36.Insulin

15.

Jenkins

H. E.

Tolman

A. W.

Yuen

C. M.

Parr

J. B.

Keshavjee

Pérez-Vélez

C. M.

. . .Cohen

(2014). Incidence of multidrug-resistant tuberculosis disease in children: Systematic review and global estimates. The Lancet, 383, 1572–1579. https://doi.org/10.1016/S0140-6736(14)60195-1

16.

Lincoln

Guba

(1985). Naturalistic inquiry. SAGE.

17.

Liotti

(2017). Conflicts between motivational systems related to attachment trauma: Key to understanding the intra-family relationship between abused children and their abusers. Journal of Trauma and Dissociation, 18(3), 304–318. https://doi.org/10.1080/15299732.2017.1295392

18.

Loveday

Sunkari

Master

Daftary

Mehlomakulu

Hlangu

Marais

B. J.

(2018). Household context and psychosocial impact of childhood multidrug-resistant tuberculosis in KwaZulu-Natal, South Africa. The International Journal of Tuberculosis and Lung Disease, 22(1), 40–46. https://doi.org/10.5588/ijtld.17.0371

19.

Moss

Cyr

Bureau

J.-F.

Tarabulsy

G. M.

Dubois-Comtois

(2005). Stability of attachment during the preschool period. Developmental Psychology, 41(5), 773–783. https://doi.org/10.1037/0012-1649.41.5.773

20.

Nowell

L. S.

Norris

J. M.

White

D. E.

Moules

N. J.

(2017). Thematic analysis: Striving to meet the trustworthiness criteria. International Journal of Qualitative Methods, 16(1), 1–13. https://doi.org/10.1177/1609406917733847

21.

Palmary

(2019). Migrant children separated from their parents: Where does the real risk to children’s safety lie? South African Journal of Psychology, 49(1), 7–9. https://doi.org/10.1177/0081246318795827

22.

Petersen

(2000). Comprehensive integrated primary mental health care for South Africa. Pipedream or possibility? Social Science and Medicine, 51(3), 321–334. https://doi.org/10.1016/S0277-9536(99)00456-6

23.

Robertson

Bowlby

(1952). Responses of young children to separation from their mothers. Courrier de la Centre International de l’Enfance, 2, 131–140.

24.

SA Medical & Education Foundation. (2012). Brooklyn Hospital School. http://www.samefoundation.org.za/the-new-and-improved-brooklyn-hospital-school/

25.

Sanders

(2014). Family-centered care of the child during illness and hospitalization. In Hockenberry

Wilson

(Eds.), Wong’s nursing care of infants and children (pp. 658–735). Mosby Elsevier.

26.

Schaaf

H. S.

Garcia-Prats

A. J.

Du Preez

Rautenbach

Hesseling

A. C.

(2016). Surveillance provides insight into epidemiology and spectrum of culture-confirmed mycobacterial disease in children. The International Journal of Tuberculosis and Lung Disease, 20(9), 1249–1256. https://doi.org/10.5588/ijtld.15.0051

27.

Seddon

J. A.

Hesseling

A. C.

Godfrey-Faussett

Schaaf

H. S.

(2014). High treatment success in children treated for multidrug-resistant tuberculosis: An observational cohort study. Thorax, 69(5), 458–464. https://doi.org/10.1136/thoraxjnl-2013-203900

28.

Seddon

J. A.

Schaaf

H. S.

Marais

B. J.

McKenna

Garcia-Prats

A. J.

Hesseling

A. C.

. . . Furin

J. J.

(2018). Time to act on injectable-free regimens for children with multidrug-resistant tuberculosis. The Lancet Respiratory Medicine, 6(9), 662–664. https://doi.org/10.1016/S2213-2600(18)30329-1

29.

Senior

(2009). Attachment theory. In Watts

Cockcroft

Duncan

(Eds.), Developmental psychology (pp. 215–233). UCT Press.

30.

Solomon

Duschinsky

Bakkum

Schuengel

(2017). Toward an architecture of attachment disorganization: John Bowlby’s published and unpublished reflections. Clinical Child Psychology and Psychiatry, 22(4), 539–560. https://doi.org/10.1177/1359104517721959

31.

Solomon

George

(2011). Disorganization of maternal caregiving across two generations. In Solomon

George

(Eds.), Disorganized attachment & caregiving (pp. 25–51). Guilford Press.

32.

Tomlinson

(1997). ‘Pathways to attachment’: The Strange Situation and culture in the South African context. Southern African Journal of Child and Adolescent Mental Health, 9(2), 107–122. https://doi.org/10.1080/16826108.1997.9632500

33.

Tomlinson

Cooper

Murray

(2005). The mother-infant relationship and infant attachment in a South African settlement. Child Development, 76(5), 1044–1054. https://doi.org/10.1111/j.1467-8624.2005.00896.x

34.

Tracy

S. J.

(2010). Qualitative quality: Eight ‘big-tent’ criteria for excellent qualitative research. Qualitative Inquiry, 16(10), 837–851. https://doi.org/10.1177/1077800410383121

35.

Unitaid. (2019). Unitaid invests in better, safer and simpler treatments and preventive therapy for multidrug-resistant TB in children. https://unitaid.org/news-blog/unitaid-invests-in-better-safer-and-simpler-treatments-and-preventive-therapy-for-multidrug-resistant-tb-in-children/#en

36.

United Nations Children’s Fund. (2018). Children account for more than one third of Ebola cases in Eastern Democratic Republic of the Congo. Retrieved July 24, 2019, from https://www.unicef.org/wca/press-releases/children-account-more-one-third-ebola-cases-eastern-democratic-republic-congo-unicef

37.

Valtolina

Colombo

(2012). Psychological well-being, family relations, and developmental issues of children left behind. Psychological Reports, 111, 905–928. https://doi.org/10.2466/21.10.17.PR0.111.6.905-928

38.

Van der Horst

. (2001). John Bowlby – From psychoanalysis to ethology: Unravelling the roots of attachment theory. John Wiley & Sons.

39.

Van Der Walt

Swartz

. (2002). Task orientated nursing in a tuberculosis control programme in South Africa: Where does it come from and what keeps it going? Social Science & Medicine, 54, 1001–1009. https://www.ncbi.nlm.nih.gov/pubmed/11999498

40.

Van IJzendoorn

M. H.

Sagi

. (1999). Cross-cultural patterns of attachment: Universal and contextual dimensions. In Cassidy

Shaver

P. R.

(Eds.), Handbook of attachment: Theory, research and clinical applications (pp. 713-734). Guilford Press.

41.

Waddoups

A. B.

Yoshikawa

Strouf

(2019). Developmental effects of parent-child separation. The Annual Review of Developmental Psychology, 1, 387–410. https://doi.org/10.1146/annurev-devpsych-121318-085142

42.

Wadesango

Chabaya

Rembe

Muhuro

(2011). Poverty as a source of behavioural problems that affect the realization of the right to basic education among children: A case study of schools in the Eastern Cape – South Africa. Journal of Social Science, 27(3), 149–156. https://doi.org/10.1080/09718923.2011.11892915

43.

Wartella

(2018). Social policy report brief: How the threat of deportation affects children in Latino immigrant families (Report No. 31). The Society for Research in Child Development. https://www.srcd.org/research/how-threat-deportation-affects-children-latino-immigrant-families

44.

World Health Organization. (2014). Global Tuberculosis report 2014. http://apps.who.int/iris/handle/10665/137094

45.

Zimri

Casper

Hoddinott

Schaaf

Garcia-Prats

Rose

Viljoen

(2020). A novel approach for eliciting adolescent MDR-TB treatment tolerability: Qualitative data from South Africa. International Journal of Tuberculosis and Lung Disease, 24(1), 43–47. https://doi.org/10.5588/ijtld.19.0207