Communication, self-esteem and prolonged grief in parent-adolescent dyads, 1-4 years following the death of a parent to cancer

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European Journal of Oncology Nursing 50 (2021) 101883

Available online 28 November 2020

Communication, self-esteem and prolonged grief in parent-adolescent

dyads, 1–4 years following the death of a parent to cancer

Charlotte Angelhoff

a,b,*

_{, Josefin Sveen}

a,c

_{, Anette Alvariza}

a,d

_{, Megan Weber-Falk}

a

_,

Ulrika Kreicbergs

a,e

a_{Department of Health Care Sciences, Palliative Research Center, Ersta Sk¨ondal Br¨acke University College, Stockholm, Sweden}

b_{Crown Princess Victoria’s Child and Youth Hospital and Department of Biomedical and Clinical Sciences, Link¨oping University, Link¨oping, Sweden} c_{National Center for Disaster Psychiatry, Department of Neuroscience, Uppsala University, Uppsala, Sweden}

d_{Capio Palliative Care Unit, Dalen Hospital, Stockholm, Sweden}

e_{Department of Women’s and Children’s Health, Childhood Cancer Research Unit, Karolinska Institute, Stockholm, Sweden}

A R T I C L E I N F O Keywords:

Adolescents Bereavement Communication Family centred care Family nursing Person-centred care

A B S T R A C T

Purpose: Talking and grieving together may be advantageous for maintaining belief in a meaningful future and can help bereaved adolescents and their parents to cope better with the situation. The aim of this study was to explore communication, self-esteem and prolonged grief in adolescent-parent dyads, following the death of a parent to cancer.

Method: This study has a descriptive and comparative design. Twenty family dyads consisting of parentally bereaved adolescents (12–19 years) and their widowed parents completed the Parent and Adolescent Commu-nication Scale, Rosenberg Self-Esteem Scale and Prolonged Grief-13, 1–4 years following the death of a parent. Results: Twelve family dyads reported normal-high parent-adolescent communication, 11 dyads rated normal- high self-esteem. Two adolescents and three parents scored above the cut-off for possible prolonged grief dis-order (≥35), none of these were in the same dyads. There was a difference (p < .05) between boys (mean 40.0) and girls (mean 41.9) with regard to open family communication, as assessed by parents. Girls reported lower self-esteem (mean 26.0) than boys (mean 34.1, p < .01).

Conclusions: This study provides insights from parentally bereaved families which indicate that despite experi-encing the often-traumatic life event of losing a parent or partner, most participants reported normal parent- adolescent communication, normal self-esteem and few symptoms of prolonged grief. The potential usefulness of identifying families who may need professional support in family communication following the death of a parent is discussed.

1. Introduction

The death of a parent is among the worst things that can happen to an adolescent. The loss of someone loved may affect the individual emotionally, physically, socially, cognitively, and spiritually (Zisook

et al., 2014). Previously, adolescents and young adults have reported

poor psychosocial wellbeing, anxiety, and depression following the death of a parent to cancer (Lundberg et al., 2018a). If grief reactions persist, the risk of negative outcomes, such as depression, insomnia, and prolonged grief may increase (Bylund-Grenklo et al., 2016). Also, loss of a loved one in adolescence may result in negative life events that make it

difficult to cope with losses later in life (Schwartz et al., 2018). For the widowed parent, losing a partner is not only associated with an elevated risk of psychological health problems, such as depression and anxiety (Blanner Kristiansen et al., 2019; Yopp et al., 2019), which may impact their parental role. The parent also must adjust to sub-stantial secondary consequences of loss, such as changes in household roles and household communication patterns (Stroebe and Schut, 1999;

Weber et al., 2019a). A qualitative study, with focus on communication in families with minor children following the death of a parent to cancer, revealed the importance of family communication for coping with the loss (Weber et al., 2019a). Furthermore, studies suggest that

* Corresponding author. Crown Princess Victoria’s Child and Youth Hospital and Department of Biomedical and Clinical Sciences, Link¨oping University, Link¨oping, Sweden.

E-mail address: charlotte.angelhoff@liu.se (C. Angelhoff).

Contents lists available at ScienceDirect

European Journal of Oncology Nursing

journal homepage: www.elsevier.com/locate/ejon

https://doi.org/10.1016/j.ejon.2020.101883

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communication between the surviving parent and child may be a useful target of clinical intervention to improve psychological health. (Field et al., 2014; Shapiro et al., 2014; Weber et al., 2019b).

Although grief is a natural human reaction and a universal feature of life, form and intensity of its expression can vary considerably. Grief is a complex process, which may affect the development of our identities as it is closely linked to those aspects of life that are most important to us (Archer, 1999). Sometimes yearning becomes persistent, and intense emotional pain and preoccupation with the diseased cause functional impairment. If this impairment lasts for more than six months after the loss it can be referred to as prolonged grief (Prigerson et al., 2009).

Communication is an important factor in determining children’s grief reactions. Engaged communication has been reported to be asso-ciated with lower levels of grief and depressive symptoms in bereaved children (Shapiro et al., 2014). In a parent-adolescent dyad it is possible that the individuals are at different stages of the grieving process, and consequently have difficulties with communication within the family. Accordingly, as adolescents strive for more autonomy and indepen-dence, distress in parent-adolescent relationships is common. Research has shown that the intensity of conflicts is often high and may increase over time in some parent-adolescent dyads, whereas other have lower, more stable levels of conflict intensity across adolescence (Hadiwijaya et al., 2017).

Good family communication has the potential to increase adoles-cents’ life satisfaction and self-esteem (Cava et al., 2014; Levin et al., 2012; Lo Cascio et al., 2013) as well as their psychological health (Weber

et al., 2019b). Talking and grieving together with the widowed parent

may be advantageous for maintaining belief in a meaningful future and can help bereaved adolescents and young adults to cope better with the situation. In a study by Lundberg et al. (2018a), bereaved young adults reported high levels of a meaningful future when they had good re-lationships with the widowed parent, shared their grief and received support. Accordingly, poor communication with the widowed parent has been associated with an increased risk of depression and anxiety (Lo Cascio et al., 2013; Raveis et al., 1999). On the other hand, widowed parents have expressed that providing their children with practical and emotional support while at the same time dealing with their own grief can be both difficult and stressful (McClatchey, 2018; Weber et al., 2019a) as they may be struggling with their own identity and feelings of guilt. This struggle may negatively affect their communication with their children (Weber et al., 2019a). Moreover, parental depression has been shown to be associated with poor self-esteem in their children (Krug et al., 2016).

To our knowledge, no previous study has explored communication, self-esteem and prolonged grief in paired adolescent-parent dyads. Considering that both adolescents’ and parents’ psychological health and self-esteem seem to be dependent on family member’s ability to communicate with one another, and that communication may help families to cope with their grief, we found it advantageous to study this further. Thus, the aim of this study was to explore communication, self- esteem and prolonged grief in adolescent-parent dyads, following the death of a parent to cancer.

2. Methods

2.1. Design

This study has a descriptive and comparative design, and data was derived from a larger project investigating communication and psy-chological health in bereaved families with children between 1 and 18 years old at time of parent’s death. The study was conducted in accor-dance with the principles embodied in the Declaration of Helsinki (World Medical Association, 2013). Ethical approval was obtained from the Regional Ethical Review Board in Stockholm, Sweden (Dnr, 2016/1192–31/1).

2.2. Participants and procedure

Participants were Swedish-speaking families with children and ad-olescents living at home. For this paper, we focused on adad-olescents (12–19 years old) who had lost a parent to cancer 1–4 years earlier and their widowed parents. The families should reside in Stockholm County during data collection and the parents should have lived together at the time of death, to enable examination of the effects of the death on both the adolescent and the widowed parent.

The Swedish National Causes of Death Register and the Multi- Generational Register at Statistics Sweden were used to identify poten-tial participants. Eligible families were identified and sent an informa-tional letter including a link to a website, where they could sign up to register for the study. A link to an online questionnaire was then sent to them by e-mail. Twenty-three adolescents participated in the study, of which three were excluded from the analyses in this paper as their parents did not participate. Data was collected between November 2017 and March 2018.

2.3. Measures

Study-specific questionnaire. The participants filled out a study

and age specific questionnaire, consisting of questions on demographics.

Parent-adolescent communication. The Parent and Adolescent

Communication Scale (PAC) was used to measure parent-adolescent communication. Parents completed a parent-proxy form for each of their participating adolescents. Adolescents completed an age adapted adolescent self-report questionnaire. The PAC consists of 20 items answered on a 5-point Likert scale (1 = Strongly disagree, 5 = Strongly agree) with a possible score range between 20 and 100, where scores 20–69 indicate low communication, 70–79 normal communication, and 80–100 high communication. The PAC includes two subscales: open family communication, focusing on the positive aspects of parent- adolescent communication, and problems in family communication, focusing on the negative aspects. The items on the problems in family communication subscale are reversed in the analysis, i.e., the higher the score, the milder the problems (Barnes and Olson, 1982). The PAC has been translated and validated previously, where this population was part of the sample (Weber et al., 2019b). The internal consistency for the PAC was high in this sample (total PAC Cronbach’s α =0.92, open family communication Cronbach’s α = 0.88, problems in family communication Cronbach’s α =0.85).

Self-esteem. Self-esteem was measured using the Rosenberg Self-

Esteem Scale (RSE) (Rosenberg, 1989). The RSE consists of 10 items answered on a 4-point Likert scale (1 = Strongly disagree, 4 = Strongly agree) with a possible score range between 10 and 40. The cut-off scores (10–24 low self-esteem, 25–35 normal self-esteem, 36–40 high self-esteem) are based on previous studies (Isomaa et al., 2013;

Lund-berg et al., 2018a, 2018b). The Swedish version of the RSE has been

evaluated for psychometric properties in Sweden and showed good in-ternal consistency, criterion, convergent and discriminant validity, and sensitivity to change (Eklund et al., 2018). The internal consistency in this sample was high (Cronbach’s α =0.90).

Prolonged grief. To assess symptom levels of prolonged grief, the

Swedish version of PG-13 was used (Pohlkamp et al., 2018; Prigerson et al., 2009). The PG-13 contains 11 items assessing cognitive, behav-ioral and emotional symptoms, rated on a 5-point scale (1 = not at all, 5 =several times a day/overwhelmingly), and two items assessing dura-tion and impairment (“yes” or “no”). A score of ≥35 indicates probable prolonged grief disorder adults (Pohlkamp et al., 2018). A cut-off score for prolonged grief in adolescents is not available.

2.4. Statistical analyses

Descriptive statistics, e.g., means, standard deviations (sd), medians (md), quartiles (q1–q3), frequencies (n) and percentages (%) were used

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to describe participants’ demographic characteristics, as well as parent and adolescent ratings of parent-adolescent communication (PAC), self- esteem (RSE) and prolonged grief (PG-13). Wilcoxon’s signed rank test was used to compare parent’s reported scores on PAC, RSE and PG-13 with their adolescent’s scores on the same instruments, i.e., paired adolescent-parent dyads. The Mann Whitney U test was used to test for differences in PAC, RSE and PG-13 between gender. Spearman’s rho (ρ)

was used for correlation analyses between the validated instruments. SPSS version 25 was used for statistical analyses.

3. Results

3.1. Family dyad characteristics

In total, 20 family dyads consisting of 20 adolescents (12 girls and eight boys) and 17 parents (11 mothers and six fathers) participated in the study (Table 1). When there was more than one adolescent in the family, the parent answered separate PAC forms for each adolescent. The average age of the adolescents was 15.3 years (sd = 2.0) and that of the parents was 50.5 years (sd 4.9). The families had lost one parent to cancer within the past four and a half years (mean = 3.4 years, sd = 1.0). The adolescents were between 8 and 17 years old at time of death (mean =12.4 years, sd 2.0).

3.2. Parent-adolescent communication

Nine adolescents and eight parents reported high (≥80) parent-

adolescent communication, and four adolescents and nine parents re-ported normal (70–79) parent-adolescent communication. In total, 12 family dyads reported normal-high parent-adolescent communication, whereof high parent-adolescent communication was reported in both the adolescent and the parent in five dyads (A11/P11, A14/P14, A16/ P16, A17/P17 and A20/P20) Seven adolescents and three parents, including two family dyads (A1/P1 and A5/P5), reported low (<70) parent-adolescent communication (Fig. 1).

No statistically significant differences were found between the adolescent and parent reports with regard to parent-adolescent communication (Table 2). Time since death correlated negatively with the adolescents’ reports of parent-adolescent communication for PAC total score (ρ = − 0.50, p < .05) and for the open family communication subscale (ρ = − 0.47, p < .05), indicating that the adolescents’ ratings of parent-adolescent communication was higher for the adolescents from families with a shorter time since death. This correlation was not found for parent reports.

There was a significant difference (p < .05) between boys and girls with regard to parents’ open family communication, indicating that the parents experienced more open communication with their daughters (mean = 41.9, sd = 5.3, md = 44, q1–q3 = 40–45) than their sons (mean =40.0, sd = 2.3, md = 40, q1–q3 = 38–43). No significant correlation was found between the adolescents’ or the parents’ age and ratings of parent-adolescent communication.

Table 1

Participant demographics.

Adolescents Parents

Age Sex Occupation Deceased

parent Years since loss Present when parent died Age Sex Highest education Occupation Marital status A1/P1 17 Female Unemployed Father 3.3 Yes, and I don’t regret it 53 Female University Working In a

relationship A2/P2 18 Female Studying Mother 4.7 No, and I don’t regret it 53 Male Upper secondary

school Working Single

A3/P3 13 Female Studying Father 2.8 No, and I am not sure if I

regret it or not 44 Female University Studying Single A4/P4 15 Female Studying Mother 3.8 Yes, and I don’t regret it 50 Male Upper secondary

school Working Single

A5/P5 16 Male Studying Father 4.1 No, and I regret it 50 Female University Working Single A6/P6 17 Male Studying Father 3.7 Yes, and I don’t regret it 50 Female University Working Single A7/P7 12 Female Studying Father 4.6 No, and I regret it 38 Female Lower secondary

school Studying Single A8/P8 19 Male Working Father 4.1 Yes, and I don’t regret it 57 Female University Working Single A9/P9 14 Female Studying Mother 4.0 Yes, and I don’t regret it 50 Male University Working Single A10/

P10a 17 Male Studying Father 3.7 No, and I don’t regret it 50 Female University Working Single A11/

P11 15 Male Studying Father 4.7 Yes, and I don’t regret it 54 Female Upper secondary school Working Single A12/

P12 15 Female Studying Father 4.1 No, and I regret it 45 Female University Working In a relationship A13/

P13a 13 Male Studying Father 3.7 No, and I am not sure if I _{regret it or not} 50 Female University Working Single A14/

P14 16 Female Studying Mother 2.5 Yes, and I don’t regret it 58 Male University Working Single A15/

P15 14 Female Studying Mother 2.5 No, and I am not sure if I regret it or not 49 Male University Working Single A16/

P16b 18 Female Studying Father 1.2 Yes, and I am not sure if I _{regret it or not} 52 Female Upper secondary _school Working In a _relationship A17/

P17 14 Female Studying Mother 3.3 Yes, and I don’t regret it 51 Male University Working Single A18/

P18a 15 Male Studying Father 3.7 No, and I don’t regret it 50 Female University Working Single A19/

P19b 12 Female Studying Father 1.2 Yes, and I don’t regret it 52 Female Upper secondary _school Working In a _relationship A20/

P20 16 Male Studying Father 2.9 No, and I am not sure if I regret it or not 55 Female University Working In a relationship

a_{Same parent.} b _{Same parent.}

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3.3. Self-esteem in the adolescents and their parents

Five adolescents and four parents rated themselves over the cut-off for high self-esteem (≥36), and nine adolescents and nine parents rated their self-esteem as normal (25–36). In total, 11 family dyads rated normal-high self-esteem, whereof high self-esteem was found in both the adolescent and the parent in one dyad (A20/P20). Six adolescents and four parents, including two family dyads (A1/P1 and A7/P7), rated their self-esteem as low (<25) (Fig. 1).

Girls reported statistically significantly (p < .01) lower self-esteem (mean = 26.0, sd = 6.3, md = 25, q1–q3 = 22–29) than boys (mean =34.1, sd = 4.5, md = 34, q1–q3 = 30–39). No such gender differences were found for parent’s reports of self-esteem. No statistically significant differences were found in self-esteem between the adolescents’ ratings and their parents’ ratings (Table 2). Time since death and age were not significantly correlated with the adolescents’ or the parents’ reports of self-esteem.

3.4. Prolonged grief

Two adolescents and three parents scored ≥35, which is a suggested cut-off for possible prolonged grief disorder in adults. None of these

were in the same family dyads. No statistically significant differences were found in prolonged grief between the adolescents and their parents (Table 2). No statistically significant differences in prolonged grief were found between gender. Time since death and age were not significantly correlated with symptoms of prolonged grief.

3.5. Correlations between parent-adolescent communication, self-esteem and prolonged grief

For the parents, higher scores on parent-adolescent communication total score correlated statistically significantly with higher scores on self-esteem (ρ =0.58, p < .01), and the same was seen for open family communication and self-esteem (ρ =0.59, p < .01). No such correlations were found in the adolescents’ reports.

One family dyad (A1/P1) reported low scores on both parent- adolescent communication (<70) and self-esteem (<25), and one fam-ily dyad (A20/P20) reported high scores on both parent-adolescent communication (>79) and self-esteem (>35) (Fig. 1). However, no statistically significant correlations were found between the adolescents and the parents reported scores for parent-adolescent communication or self-esteem.

No statistically significant correlations were found between longed grief and parent-adolescent communication or between pro-longed grief and self-esteem, even though there was a non-significant tendency that high levels of prolonged grief were related to low self- esteem in both groups (adolescents: n = 20, ρ = − 0.40, p = .08, par-ents: n = 17, ρ = − 0.47, p = .06).

4. Discussion

This study, focusing on communication, self-esteem and prolonged grief in family dyads consisting of cancer-bereaved adolescents and their widowed parents, mainly reflect normal levels of parent-adolescent communication and self-esteem, and little impact of prolonged grief. The findings reveal that widowed parents reported more positive open communication with their daughters than their sons. Moreover, we found that parentally bereaved girls assessed self-esteem significantly lower than the boys.

Most adolescents, as well as parents, reported scores above the cutoff for normal parent-adolescent communication, and sores indicating high parent-adolescent communication were mutual in five of the twenty family-dyads. However, there were two family dyads in the present study below the cut-off for normal parent-adolescent communication, whereof one family dyad also reported mutual low self-esteem. This may be worth noting already during a parent’s illness, to support such

Fig. 1. The adolescents’ (A) and parents’ (P) total Parent and Adolescent Communication Scale (PAC) scores (lower bar) and Rosenberg Self-Esteem Scale (RSE)

scores (upper bar) presented for paired family dyads (A1 and P1, A2 and P2, etc.). Cut-off scores were <70 for low family communication (PAC) and <25 for low self- esteem (RSE).

Table 2

Family communication, self-esteem and grief.

Adolescents n = 20 Parents n = 20 p valuea Mean (sd) Md (q1–q3) Mean (sd) Md (q1–q3) Total family communicationb 72.5 _(15.3) 78 _(60–85) 79.0 _(10.3) 79 _(74–86) 0.10 Open family communicationb 38.3 _(7.9) 42 _(35–44) 41.2 _(4.4) 42 _(39–44) 0.09 Problems in family communicationb 34.2 _(8.6) 37 _(26–42) 37.9 _(6.9) 38 _(32–43) 0.18 Self-esteemc _29.3 (6.8) 29 (23–36) 29.5 (7.0) 31 (22–35) 0.94 Griefd _22.8 (7.3) 21 (18–28) 24.0 (11.3) 21 (16–28) 0.74

a_{Wilcoxon’s signed rank test was used to compare paired adolescent-parent} dyads in all outcomes, n = 20.

b _{Parent-Adolescent Communication Scale. Parents answered one form for} each adolescent, n = 20.

c_{Rosenberg Self-Esteem Scale. Parents answered one form for themselves, n =} 17.

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families and enhance their communication as mutual open family communication is central for the democratic functioning in families, leading to satisfaction in both adolescents and parents (Stattin et al., 2011). Bereaved adolescents wanting to improve parent-adolescent communication could be invited to family support programs. In Swe-den, a grief and communication support intervention comprised of three sessions has been adapted from the Family Bereavement Program (Ayers et al., 2013; Sandler et al., 2003, 2018), and a pilot study suggests that the intervention program could be both feasible and beneficial for families following the death of a parent.

The parents in the current study reported higher open communica-tion, with their daughters than their sons. No studies of parents’ reports of parent-adolescent communication were found to either confirm or reject this finding. Adolescents’ reports in previous studies are contra-dictory, and no study was found examining this in the context of bereaved families. A study by Vok´aˇcov´a et al. (2017), found that boys communication with their fathers easier than girls. Other studies of adolescents’ reports of parent-adolescent communication reveal that adolescents have better open communication with their mothers than their fathers (Chen et al., 2018; Heller et al., 2006). It seems that parents perceive a higher quality of communication between themselves and their adolescent when the adolescent shows more openness to commu-nication. Heller et al. (2006) found that girls report higher levels of empathic concern than boys, which was related to open communication with their parents, regardless of parents’ gender.

Half of the family dyads in our study reported mutual normal or high self-esteem. This result is consistent with the findings of Lundberg et al. (2018a, 2018b), who reported normal to high self-esteem in young adults following the death of a parent. What the current study adds, is that girls reported significantly lower self-esteem than boys. This dif-ference has been observed in different cultures across the world ( Blei-dorn et al., 2016). Overall, boys tend to report higher self-esteem than girls do. Bleidorn et al. (2016) also found that self-esteem increases from adolescence to adulthood, and that this might reflect universal biolog-ical processes as well as universal sociocultural influences. According to

P´erez-Fuentes et al. (2019), high school students who feel the most affection and communication from their parents were the ones who scored highest on measures of self-esteem. This contrasts with our findings, where the parents reported higher open communication with their daughters, but still the daughters reported lower self-esteem than the sons.

We could not reveal a statistically significant relationship between self-esteem and parent-adolescent communication, yet the family dyad with highest score of self-esteem also scored high on parent-adolescent communication, whereas the family dyad with lowest score of self- esteem reported low parent-adolescent communication. Further, Dell-mann (2018) suggests that low self-esteem may be a risk factor in pro-longed grief after the death of a partner. In the current study, no significant association was found between symptoms of prolonged grief and self-esteem or between symptoms of prolonged grief and parent-adolescent communication.

The results of this study highlight family communication and self- esteem in bereaved adolescents and their parents. Adolescence is one of the most active phases of human development and physical, psy-chosocial, emotional or environmental changes during this time may cause health consequences not only in adolescence but over the life- course (World Health Organization, 2019). Health care professionals who meet families where a parent is dying or has died, may encourage the adolescent and his or her parents to speak openly and honestly about their feelings, emotional as well as physical, this may also support their grief process (Oates and Maani-Fogelman, 2020). In some families, it may be enough to encourage continuing communication, whereas others may need more professional support to enhance parent-adolescent communication. Evidence-based guidelines for family-centred care within adult palliative care, including care of chil-dren and adolescents, would be beneficial for health-professionals to

utilise when they meet the ill parent’s family. Family-centred care is a way of caring for children and their families within paediatric care, ensuring that the care is planned around the whole family, and that all family members are recognized as care recipients (Shields et al., 2006;

Shields 2015). However, to our knowledge no previous studies or evidence-based guidelines for family-centred care within adult palliative care has been found. There is a need for such to enhance the status of children and adolescents in the bereaved family.

4.1. Limitations

Our study has both strengths and limitations. Studying communi-cation and self-esteem and prolonged grief in adolescent-parent dyads is a unique approach. Furthermore, both mothers and fathers are repre-sented, as well as their daughters and sons, although the number of participants is sparse. Unfortunately, we have no information of the families who declined participation and their reason to do so. This may have biased our findings.

5. Conclusion

This study provides insights from parentally bereaved families which indicate that despite experiencing the often-traumatic life event of losing a parent or partner, most participants reported normal parent- adolescent communication, normal self-esteem and few symptoms of prolonged grief. It is impossible for us to draw any causal conclusions whether the well functioned communication, and normal level of self- esteem among participating parent adolescent dyads reflect the low symptoms of prolonged grief or not. One can assume that, from previous knowledge that openness in family communication reduce the risk of prolonged grief symptoms.

Funding

This research received funding from the Kamprad Family Foundation for Entrepreneurship, Research & Charity, Sweden (54502) and Gål¨o-stiftelsen, Sweden (54505).

CRediT authorship contribution statement

Charlotte Angelhoff: Conceptualization, Formal analysis,

Investi-gation, Writing - original draft. Josefin Sveen: Conceptualization, Data curation, Data collection, Writing - review & editing. Anette Alvariza: Conceptualization, Data curation, Writing - review & editing. Megan

Weber-Falk: Conceptualization, Data curation, Data collection, Writing

- review & editing. Ulrika Kreicbergs: Conceptualization, Data cura-tion, Funding acquisicura-tion, Supervision, Writing - review & editing.

Declaration of competing interest

None declared.

Acknowledgements

We want to thank all the participating families for their willingness to share their experiences with us.

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