Mother’s experience of the support from a bereavement follow-up intervention after the death of a child
Anna Liisa Aho, Senior Assistant Professor, University of Tampere, School of Health Sciences, PO BOX 607, FIN – 33014 Tampere, Finland. Telephone: +358 40 1901448
Aims and objectives. To describe the mothers’ experience of the support they received in a bereavement follow-up intervention after the death of a child and their experiences of the intervention programme. The intervention included three complementary components: (1) a support package, (2) peer supporters’ contact with mothers and (3) health professionals’ contact with mothers.
Background. Although several types of intervention have been targeted at grieving parents or mothers, there exists a lack of knowledge of what kind of intervention is supportive and enhances the coping of parents after the death of a child.
Design. An intervention was implemented in two university-level hospitals in Southern Finland. The study participants were grieving mothers (n = 86) whose child had died at the age of three or younger. The data were collected by using a structured questionnaire within six months of the death of a child.
Methods. The data were analysed with descriptive statistical methods.
Results. The mothers felt that the support they received helped them in coping with the situation. Among the different forms of received support, the mothers felt they received the most emotional support from peer supporters and health professionals. The mothers considered the support intervention to be useful.
Conclusion. The collaborative support intervention between health professionals and peer supporters enabled versatile, immediate and long-term support that helped the mothers cope after the death of a child.
Relevance to clinical practice. Health professionals should collaborate systematically with the third sector to provide support for mothers after the death of their child. In addition to the support given in hospital, health professionals should arrange more contacts and meetings with bereaved mothers on a long-term basis, after the mothers have left the hospital.
In 2010, 60,980 children were born alive in Finland. Every year the number of stillborn children is about 200. In addition, 140 children under one year of age die, most of whom die during the first weeks after the birth. Annually, about 20 children of one to three years of age die (Statistics Finland 2011a,b). The death of a child is one of the most painful crisis parents can experience during their lives and, to cope, they need many types of informal and professional support (Dyregrov 2004, Barrera et al. 2007, Cacciatore 2010).
Interventions for bereaved parents to help them to cope have been developed and tested to some extent. The support interventions have been complex in their nature and implementation. Although parents have had a positive experience of the support interventions, demonstrating their effect and helpfulness has received less attention (Rowa-Dewar 2002, Chambers & Chan 2004, Flenady & Wilson 2008, Harvey et al. 2008).
The problem in intervention studies has been the methodological aspects; either the number of participants has been low or there have been no control groups and intervening factors have not been controlled. In addition, the complexity of the interventions has caused uncertainty as to what kind of support should be given, at what time and who should provide the support in order for the intervention to truly help in coping with the death of a child. This research describes the mothers’ experiences of the support they received in a bereavement follow-up intervention immediately after the death of a child and their experiences of the intervention programme. The accurate description of the intervention, controlling the factors and measuring the different forms of support received, provides new information on the implementation of interventions. The study is part of a broader bereavement research project where a support intervention for bereaved parents was developed and tested (Aho et al. 2010, 2011).
The death of a child is one of the most stressful experiences in mothers’ lives, and their coping may take a long time (Laakso & Paunonen-Ilmonen 2002, Arnold & Gemma 2008, Cacciatore 2010). Bereaved mothers may have thoughts of self-harm, feelings of regret, guilt, despair and symptoms of physical distress (Barr & Cacciatore 2008, Cacciatore 2010). Mothers also have experience of personal growth, such as greater forgiveness, empathy and hope after their child’s death (Laakso & Paunonen-Ilmonen 2002, Lundquist et al. 2002).
Social support protects from the impact of stressful life events (Kahn 1979), and it is also helpful for coping after the death of a child (Hogan et al. 2001, Kreichbergs et al. 2007, Arnold & Gemma 2008, White et al. 2008, Cacciatore 2010). Social support can be conceptualised in a number of ways. Kahn (1979) identified three types of social support: affirmation, affect and concrete aid. Affirmation refers to expressions of agreement, or acknowledgement of the appropriateness, or suitability, of some act or statement of another person. Affect refers to expressions of liking, admiration, respect or love. Aid includes direct assistance, such as the exchange of money, information and time. Bereaved mothers receive social support in the form of affirmation, such as information about the cause of death, grief, differences in grief and its effects on coping (Dent et al. 1996, Laakso & Paunonen-Ilmonen 2002, Dean et al. 2005, Ota 2006, Cacciatore 2010), in the form of affect, such as listening, being available, grieving together and answering questions (Malacrida 1999, McHaffie et al. 2001, Lundquist et al. 2002, Contro et al. 2004, Dean et al. 2005) and in the form of concrete aid, such as helping them deal with practical matters (Thuen 1997, Dean et al. 2005).
Several types of intervention have been targeted at grieving parents after the death of a child (Cambers & Chan 2004, Flenady & Wilson 2008, Harvey et al. 2008). Support for the bereaved can take the form of professionally led, or peer led support, either on a one-to-one or a group basis. Previous studies have reported on group sessions for bereaved parents (Heiney et al. 1995, DiMarco et al. 2001); small group sessions focused on information giving, skill building and emotional support (Murphy et al. 1998); contact with a skilled grief worker, access to information and handouts for the social network of the parents (Murray et al. 2000); hospital-based pastoral care involving family contact, home/funeral home visits, and educational meetings with parents and their supporters at a restaurant (Oliver et al. 2001); and a couples-based bereavement support programme that included a sympathy card, a follow-up telephone call and a group session for bereaved parents (Reilly-Smorawski et al. 2002). The efficacy of a parent bereavement programme is quite weak, or even non-existent, although some studies have reported that parents have a positive impression of them (Murphy et al. 1998, DiMarco et al. 2001, Reilly-Smorawski et al. 2002, Rowa-Dewar 2002, Cambers & Chan 2004, Currier et al. 2008, Flenady & Wilson 2008, Harvey et al. 2008).
As indicated by Dyregrov (2004), bereaved parents need many types of informal and professional support. Long-term support from self-help groups, parental groups with similar experience, and peers has been rated favourably by mothers (Dent et al. 1996, Murphy et al. 1998, Laakso & Paunonen-Ilmonen 2002, Reilly-Smorawski et al. 2002, Kreichbergs et al. 2007). Bereaved mothers expect long-term bereavement follow-up social support from health professionals (Cook et al. 2002, Macdonald et al. 2005, Säflund & Wredling 2006, Meert et al. 2007, Widger & Picot 2008).
The importance of designing interventions for specific subgroups of bereaved individuals has been acknowledged (Currier et al. 2008). There is a lack of support-intervention studies, especially with respect to the types of support received, their effectiveness and helpfulness. According to the results from a study on fathers, the support intervention encouraged fathers’ personal growth and they considered the support intervention to help with their coping process. The support intervention was also perceived to work well and be well timed (Aho et al. 2010).
Aim & research question
The aim of the study was to describe the mother’s experience of the support they received in a bereavement follow-up intervention after the death of a child and their experiences of the intervention programme. The research questions were as follows:
- 1 What kind of support bereaved mothers did receive in the bereavement follow-up intervention from health professionals and peer supporters after the death of a child?
- 2 What is the association between the background variables (the attributes of the mother and deceased child, anticipatory grief, participation in a bereavement support group and the amount of support from health professionals and peer supporters) and the support received from health professionals or peer supporters after the death of a child?
- 3 What kind of experiences have the mothers had of the intervention programme?
Description of the intervention
The bereavement follow-up intervention was guided by theory but also by a synthesis of clinical and scientific knowledge with a focus on the participant perspective and clinical experience (Aho et al. 2010). The intervention included three complementary components: (1) a support package, (2) peer supporters’ contact with mothers and (3) health professional’s contact with mothers.
The support package consisted of informational letters and poems and stories about the loss of a child. The package was tailored to each mother’s needs (e.g. information on sibling grief was removed from the package if the family did not have other children).
While in hospital, health professionals asked the bereaved mothers whether they would consent to peer supporters’ contact and whether their contact information could be passed on to the peer support association (Käpy ry, 2011, Available at: http://www.kapy.fi/[accessed 4 October 2011]). In addition to their previous own experience of the death of a child, peer supporters were trained by professionals. (Aho et al. 2010).
The peer supporters first made a telephone call to the mothers (about a week after the death) and then scheduled a home visit in accordance with the mothers’ wishes. The overriding aim of the visit was to communicate compassion and concern to the mothers. The visit consisted of paying attention to the mothers, discussions with them, caring for their other children and giving information. The health professionals met the mothers in a scheduled meeting with both parents within two to six weeks following the death. The time varied because of hospital follow-up protocol for the mother or depending on the availability of the pathological cause of death. If the meeting was inconvenient for the parents, or not possible because of the nature of the unit, either the nurse who was present at the time of the death of the child in hospital or the child’s primary nurse contacted the parents by telephone. The topics of the call varied depending on the mothers’ needs but mainly followed the written framework devised to guide the intervention (Aho et al. 2010).
The purpose of the intervention programme was to provide affirmation, affect and concrete aid for the grieving mothers after leaving the hospital as a collaborative effort by health professionals and peer supporters.
Study design and settings
The study was carried out in all Finnish University hospitals (n = 5). Depending on the hospital in which the child died or to which the dead child was taken, the mothers were either assigned to an intervention group in two university hospitals or to a control group that received routine hospital care in three university hospitals immediately after the death of their child. All units of the hospitals where a child might die or to which a dead child might be taken (the intensive care unit, the maternity ward and the emergency room) participated in the study. Only the intervention group mothers were offered the intervention. All parents were assigned the same treatment conditions because of the ethically and emotionally sensitive topics. There was a wide variation in routine follow-up care in control hospitals by individual units to bereaved parents. The units gave informational support mainly about practical issues, such as organisation of memorial services or bereavement support groups and peer support association. Collaboration with peer supporters or a peer support association was rare. A postdischarge contact was available only in a few units. (Aho et al. 2010).
The implementation included the development of a programme to be used in nursing practice, intervention training for the practitioners involved and for peer supporters, and the intervention implementation. A hands-on, practical action plan, developed to aid the implementation, was included in each unit’s project folder (Aho et al. 2010).
The data for the study were collected six months after the child’s death. Owing to the research permission process, data collection began in June 2006 and was finished in February 2010.
Social support provided by health professionals and peer supporters
Social support provided by health professionals and peer supporters after the death of a child was measured with an instrument developed for this study based on Kahn (1979) and previous studies (e.g., Dent et al. 1996, McHaffie et al. 2001, Samuelsson & Rådesten 2001, Wood & Milo 2001, Cook et al. 2002, Contro et al. 2004, McCreight 2004, Dean et al. 2005, Aho et al. 2009). The summated rating scale was developed specifically to be used in the intervention group.
The support received from health professionals comprised 20 questions in three subscales: affect (7 items), affirmation (8 items) and aid (5 items) (Table 3). The internal consistency of the scale on the basis of Cronbach’s alpha values was 0·87–0·92. The support received from peer supporters comprised 16 questions in three subscales: affect (6 items), affirmation (6 items) and aid (4 items) (Table 4). The internal consistency of the scale on the basis of Cronbach’s alpha values was 0·72–0·93. The mothers evaluated the support received on a 6-point scale from 1 = ‘no support at all’ to 6 = ‘very much support’.
The instruments included the following questions: How much did the support from health professionals (1 item) and from peer supporters (1 item) help you in coping with the grief? The mothers evaluated the support helping them to cope on a 6-point scale from 1 = ‘not at all’ to 6 = ‘very much’. In addition, the instrument involved the question: Who supported you the most after leaving the hospital?
Mothers’ experiences of the intervention programme
Mothers’ experiences of the intervention programme were assessed using an instrument based on this intervention programme (Aho et al. 2010). The instrument included 15 questions about the implementation of the intervention, such as the timing of the contact by health professionals and peer supporters, the modes and number of contacts and the persons who contacted the mothers. One question asked the mothers to provide an opinion on whether the intervention was worth continuing (1 = yes, 2 = no).
The background variables (Table 1) used were age, marital status, education, vocational education, employment, health, having a living child, gender and age of the deceased child, anticipatory grief, reason of death and participation in a bereavement support group. The amount of support from health professionals (1 item) and peer supporters (1 item) after leaving the hospital was measured in both groups on a 6-point scale from 1 = ‘no support at all’ to 6 = ‘very much support’.
Table 1. Demographic statistics of participants
|Age (years) (n = 85)|
| 23–29||19 (22)|
| 30–39||58 (68)|
| 40–43||8 (9)|
|Marital status (n = 85)|
| Marriage||56 (66)|
| Common law marriage||28 (33)|
|Education (n = 85)|
| Comprehensive school||23 (27)|
| High school||62 (73)|
|Vocational education (n = 82)|
| No education||3 (4)|
| Vocational education||17 (21)|
| College or polytechnic degree||34 (42)|
| University degree||28 (34)|
|Employment (n = 85)|
| Employed||59 (69)|
| Not employed/working||13 (15)|
| Housewife||13 (15)|
|Health (n = 84)|
| Satisfactory or poor||31 (37)|
| Quite good||44 (52)|
| Very good||9 (11)|
|Has a living child (n = 86)|
| No||35 (41)|
| Yes||51 (59)|
|Gender of the deceased child (n = 86)|
| Female||39 (46)|
| Male||45 (54)|
|Stillbirth (n = 86)|
| Yes||62 (72)|
| No||24 (28)|
|Gestational age of stillborn children (n = 84)|
| 20–36 weeks||43 (71)|
| 37–42 weeks||18 (29)|
|Age of deceased child (n = 86)|
| Less than a day||7 (29)|
| 1–7 days||10 (42)|
| Over 7 days||7 (29)|
|Anticipatory grief (n = 83)|
| No advance warning||52 (63)|
| Advance warning||31 (37)|
|Reason of death (n = 72)|
| Illness||56 (78)|
| Accident||16 (22)|
Research involving bereaved persons is sensitive and requires careful ethical consideration (Harvey et al. 2008). Approval to undertake research and intervention was obtained from the Ethics Committee of the Pirkanmaa Hospital District, the Finnish Ministry of Social Affairs and Health and all the Finnish Hospital Districts. Permission was also obtained from the Hospital Districts. Mothers received both verbal and written information about the intervention and the study, and informed consent was obtained. A letter of information was enclosed with the questionnaire and sent out to the participants six months after the child’s death. The letter contained information about the study, assured the respondents of confidentiality and voluntariness of participation and encouraged them to contact the researcher with any further questions about the study. When carrying out the research, the ethical guidelines of the Declaration of Helsinki were adhered to (World Medical Association 2011). Mothers’ decisions not to participate in the study or intervention were respected, and no follow-up letters were sent. In this study, the peer supporters who implemented the intervention had over two years from the death of their own child, and they also had received the training from professionals to support. They are also provided mentoring when needed.
A statistical analysis was carried out using spss Win 18.0 (SPSS Inc., Chicago, IL, USA). The results are presented in the form of frequencies and percentages. The sum variables normal distribution was assessed with the Kolmogorov–Smirnov test. When the data were not normally distributed, non-parametric tests were used; the Mann–Whitney test was used for dichotomous variables, and the Kruskal–Wallis test was used for categorical variables. The alpha level for statistical significance was set a priori at .05 (Polit & Beck 2008).
The study participants were grieving mothers whose child had died at the age of three years or younger (including perinatal deaths at 22 weeks of gestation or foetuses over 500 g). The mothers mean age was 33·2 years (range 23–43). Two-thirds (66%) of the mothers were married. Altogether 73% of the mothers had a high school education. Almost half (42%) of the mothers had a college or polytechnic degree and one-third (34%) a university degree. Most of (69%) the mothers were employed. Over half (52%) of mothers considered their health to be quite good and 37% considered their health to be satisfactory or poor. Altogether, 59% of the mothers had a living child. Totally, 54% of the deceased children were male. Of the deceased children, 72% were stillborn and the gestational weeks of the stillborn children were 36 or less in 71% of the cases. The deceased child’s age was over seven days in only 29% of the cases. Over half (63%) of the mothers received no advance warning before the child’s death. The reason for the child’s death was illness in 78% of the cases (Table 1).
The mothers’ experience of the support received in a bereavement follow-up intervention from health professionals and peer supporters
The mothers had received a moderate amount of affect from health professionals (Md = 4·00), somewhat less affirmation (Md = 3·62) and the least aid (Md = 3·00) (Table 2). With regard to the types of affect, half of the mothers (50%) felt that the health professionals respected and valued them much/very much after the death of their child. However, 27% of the mothers felt that the people providing support did not share memories of their child with them at all (Table 3). Half (49%) of the mothers felt that they received much/very much affirmation support for information making decisions on issues regarding the child’s death. In total, 15% of the mothers felt that they did not receive any guidance from the health professional involved to seek professional support or help. Almost half of the mothers (44%) felt that they received much/very much concrete aid in the form of time from the health professional after the death of their child. Almost a third of the mothers (29%) felt that they did not receive any support from the health professionals in filling in forms.
Table 2. Mothers’ experience of support received from health professionals and peer supporters in the intervention group (n = 6)
Table 3. Support received by mothers (n = 86) from health professionals after the death of their child
| Empathised/shared emotions with me||6 (7)||16 (19)||26 (30)||37 (43)|
| Respected me and valued me||3 (3)||17 (20)||21 (24)||43 (50)|
| Shared memories of the child with me||23 (27)||30 (35)||15 (17)||17 (20)|
| Encouraged me to talk and/or express my emotions||11 (13)||20 (23)||22 (26)||32 (37)|
| Gave me hope of coping||7 (8)||23 (27)||25 (29)||29 (34)|
| Discussed/pondered on the event with me||6 (7)||22 (26)||26 (30)||32 (37)|
| Gave the opportunity to discuss unclear matters||7 (8)||18 (21)||24 (28)||36 (42)|
| Evaluated my coping||10 (12)||27 (31)||20 (23)||28 (33)|
| Encouraged to participate in peer groups||8 (9)||27 (31)||22 (26)||27 (31)|
| Guided me to seek professional support/help||13 (15)||30 (35)||20 (23)||22 (26)|
| Gave information on grief and coping methods||12 (14)||28 (33)||27 (31)||19 (22)|
| Gave information on matters related to the child’s death||7 (8)||17 (20)||19 (22)||42 (49)|
| Gave information on reactions to the death of a child||8 (9)||24 (28)||26 (30)||28 (33)|
| Gave information on who to contact in need of support||10 (12)||23 (27)||23 (27)||30 (35)|
| Gave information based on personal records||8 (9)||24 (28)||27 (31)||27 (31)|
| Gave help (e.g. filling in forms)||25 (29)||30 (35)||7 (8)||23 (27)|
| Gave me their time||6 (7)||16 (19)||24 (28)||38 (44)|
| Helped with taking care of matters after the child’s death||26 (30)||28 (33)||11 (13)||20 (23)|
| Instructed me on where to seek concrete help||28 (33)||26 (30)||16 (19)||15 (17)|
| Arranged sick leave and/or medication for me according to my needs||17 (20)||27 (30)||12 (14)||27 (31)|
The peer supporters provided a lot of affect (Md = 4·58), less affirmation (Md = 3·50) and aid the least (Md = 2·50) (Table 2). Regarding affect, over half of the mothers (53%) received much/very much respect and were valued by peer supporters after the death of their child. Half of the mothers (50%) reported that the peer supporters discussed the death and shared emotions with them much/very much. With regard to affirmation, almost half of the mothers (45%) felt that the peer supporters encouraged them much/very much to participate in the peer groups. A little over one-third of the mothers (35%) did not receive any guidance from peer supporters to meet health professionals. Regarding aid, the mothers felt that peer supporters gave them time (52% of all support types), whereas 67% of the mothers felt that they did not receive any concrete help. (Table 4).
Table 4. Social support received by mothers (n = 86) from peer supporters after the death of their child
| Discussed/pondered on the event with me||4 (5)||1 (1)||27 (31)||43 (50)|
| Encouraged me to talk and/or express my emotions||3 (3)||10 (12)||26 (30)||36 (42)|
| Empathised/shared emotions with me||2 (2)||9 (10)||21 (24)||43 (50)|
| Respected and valued me||2 (2)||10 (12)||17 (20)||46 (53)|
| Showed interested in my coping||3 (3)||10 (12)||21 (24)||41 (48)|
| Gave me hope of coping||2 (2)||13 (15)||21 (24)||38 (44)|
| Gave information on grief and coping methods||3 (3)||13 (15)||27 (31)||32 (37)|
| Encouraged to participate in peer groups||3 (3)||7 (8)||25 (29)||39 (45)|
| Guided me to meet health professionals||30 (35)||23 (27)||15 (17)||7 (8)|
| Guided me to seek professional support/help||26 (30)||22 (26)||15 (17)||11 (13)|
| Gave information according to personal needs||7 (8)||26 (30)||20 (23)||21 (24)|
| Gave information on who to contact in need of support||17 (20)||16 (19)||18 (21)||24 (28)|
| Gave me their time||4 (5)||6 (7)||20 (23)||45 (52)|
| Helped with taking care of matters after the child’s death||29 (34)||31 (36)||9 (10)||6 (7)|
| Instructed me on where to seek concrete help||31 (36)||36 (42)||5 (6)||3 (3)|
| Gave me help||58 (67)||13 (15)||0 (0)||2 (2)|
The connection of background variables to the support received from the intervention
The mother’s age has a statistically significant association (p = 0·009) with social support received from health professionals (Table 5). Mothers of the age of 30–39 (Md = 4·15) received the most social support. There was a statistically significant association between the health status of the mother and the received support from health professionals (p = 0·020). Mothers who perceived their health to be very good reported having received the most (Md = 4·46) social support. There was no linear association between other background variables (Table 1) and social support from health professionals or from peer supporters.
Table 5. Social support received from health professionals
| 20–29 years||3·18||2·50||4·10||0·009|
| 30–39 years||4·15||3·25||4·60|
| 40–59 years||3·10||2·46||3·44|
| Satisfactory or poor||3·15||2·50||4·21||0·02|
| Quite good||3·98||3·11||4·41|
| Very good||4·46||3·48||5·38|
The mothers’ experiences of the intervention programme
In total 37% of the mothers reported that the support provided by health professionals was of much/very much help in coping and 21% rated it as moderately helpful (Table 6). Only 10% reported that it was not helpful in coping. Correspondingly, 34% of the mothers felt that the support provided by peer supporters was much or very much help in coping, and 23% rated it as moderately helpful. Support from peer supporters was not helpful in coping for 9% of the mothers.
Table 6. Helpfulness of the support received from health professionals and peer supporters for the coping of mothers
|From health professionals||9 (10)||27 (31)||18 (21)||32 (37)|
|From peer supporter||8 (9)||17 (20)||20 (23)||29 (34)|
The mothers reported that the most important support person after leaving the hospital was the hospital chaplain (20%), followed by the public health nurse (19%) and the nurse/primary nurse (14%). The mothers reported that a social worker (1%) and a genetics doctor (1%) provided the least amount of support (Table 7).
Table 7. Health professional giving the most support to mothers and type of support
|Hospital chaplain||17 (20)||25 (31)||46 (57)|
|Public health nurse||16 (19)||36 (46)||49 (61)|
|Nurse/primary nurse||12 (14)||43 (54)||51 (63)|
|Psychologist||11 (13)||5 (6)||17 (21)|
|Psychiatrist||3 (4)||3 (4)||13 (16)|
|Doctor who cared for the child||2 (2)||22 (28)||37 (46)|
|Social worker||1 (1)||9 (11)||31 (38)|
|Genetics doctor||1 (1)||6 (8)||7 (9)|
|Pathologist||0 (0)||3 (4)||5 (6)|
Most (87%) mothers reported that the contact by health professionals (two to six weeks after the death of the child) was well timed. When asked about the best possible time for the contact, seven mothers (8%) suggested an earlier date, two or three days after the child’s death. Health professionals contacted the mothers mostly by telephone (71%) and once (31%), two or three times (32%) or four or more times (37%) after the mothers had left the hospital (Table 8). The number of the contacts by health professionals had a statistically significant association with the mothers’ experience of social support from health professionals (p = 0·040). Mothers who were contacted by health professionals only once reported receiving less support (Md = 3·15), as did mothers who were contacted twice or three times (Md = 3·90), and mothers contacted four or more times reported having received a moderate amount of (Md = 4·20) social support.
Table 8. Mothers’ experiences of social support in the intervention programme and association to the received social support
|The number of contacts by health professionals|
| 1||23 (31)||3·15||0·040|
| 2–3||24 (32)||3·90|
| 4 or more||27 (37)||4·20|
|The number of meetings with health professionals|
| 1||30 (43)||3·95||0·012|
| 2||16 (23)||3·20|
| 3 or more||24 (34)||4·22|
|The number of contacts by peer supporter|
| 1||10 (15)||3·01||0·027|
| 2–3||28 (40)||3·60|
| 4 or more||31 (45)||3·92|
In total, 81% of the mothers met health professionals after leaving the hospital. Of the mothers, 92% perceived the timing of the meeting as appropriate. Health professionals met the mothers 1–30 times, in most cases once (43%), twice (23%) or three or more (34%) times. The mothers mostly (63%) met a nurse/primary nurse, but also a public health nurse (61%), the hospital chaplain (46%) and the doctor who treated the child (46%) (Table 7). The number of the meetings with health professionals had a statistically significant association with the mothers’ experience of social support from health professionals (p = 0·012) (Table 9). Mothers who met health professionals only once (Md = 3·95) or twice (Md = 3·20) got less support and mothers who met health professionals three or more times got a moderate amount of (Md = 4·22) social support.
Of the mothers, 83% felt that the first contact (seven days after the death) by peer supporters was timely. An earlier date was suggested by 10% of the mothers and 7% of the mothers suggested a later date, ranging from two weeks to six months. In half of the cases (50%), peer supporters contacted the mothers both by telephone and a home visit/meeting, but some only made telephone contact (30%). The number of contacts by peer supporters ranged from 1–25 times. Peer supporters contacted the mothers once (15%), 2–3 times (40%) and 4 or more times (45%) Most mothers (97%) favoured the continuation of contact by peer supporters.
The number of the contacts by peer supporters had a statistically significant association with the mothers’ experience of social support from peer supporters (p = 0·027) (Table 8). Mothers who were contacted by peer supporters only once reported getting less support (Md = 3·01), and mothers contacted 2–3 times by peer supporters also reported getting less (Md = 3·60) support. Mothers contacted four or more times were the most satisfied (Md = 3·92) regarding the received support from peer supporters (Table 8).
The mothers received affect the most, a moderate amount of affirmation, and little aid, both from health professionals and peer supporters, after leaving the hospital. The mothers received more affect from peer supporters than from health professionals. The results confirmed the results of Dyregrov’s (2004) and Lundquist et al.’s (2002) studies. In contrast, the mothers received more affirmation from peer supporters than from health professionals, as did fathers’ according to Aho et al. (2011). According to Laakso and Paunonen-Ilmonen’s (2002), the study mothers did not always receive up to date information from health professionals after the death of the child. The results on the support received by fathers and mothers indicate that the parents receive different amounts of support from health professionals and peer supporters (Aho et al. 2011).
Mothers who perceived their health status to be very good received most social support from health professionals after the death of a child. It was not possible to determine in the study whether the mother’s health was already good or whether the support received from the health professionals enhanced it. Mothers who estimated their health to be poor reported having received the least support. This result supports a similar result from the study on fathers. Fathers with the poorest health also had the strongest grief reactions (Aho et al. 2011,.) In earlier intervention studies, it has been noticed that parents in risk groups, for instance socially isolated parents, benefit the most from interventions (Murphy et al. 1998, Murray et al. 2000). Dyregrov (2004) has mentioned that if the bereaved retain their emotional expressions, they may not allow themselves to receive emotional support.
Over half of the mothers reported that the support from health professionals and from peer supporters helped them at least moderately with coping after the death of a child. According to Aho et al. (2011), fathers felt even more often that the support received from health professionals helped them cope. In earlier studies, the support received from health professionals has also had a positive effect on the coping of mothers after the death of their child (Murphy et al. 1998 & Murray et al. 2000, Kreichbergs et al. 2007). However, this study has shown what type of support should be given, what kind of person should provide the support and how it should be timed in order for the support to help the mothers cope after the death of their child.
For the majority of the mothers, the time of contact and meetings with health professionals was well timed. The number of the contacts or meetings had a statistically significant association with the mothers’ experience of social support from health professionals. The bigger the number of contacts, the more support the mothers felt that they had received. Although the purpose of the support intervention was to have the primary nurse or doctor who cared for child contact or meet the parents, the results show that nearly half of the mothers were contacted by a nurse and a third of the mothers were also contacted by the hospital chaplain and the child’s doctor. After leaving the hospital, the mothers most often met their primary nurse, a health worker or the hospital chaplain. Despite several contacts and meetings with health professionals, the mothers felt that the hospital chaplain and a health worker gave the most support. The results differ from the experiences of fathers, as only 6% of the fathers were contacted by a public health nurse, whereas the respective figure for mothers was 61%. Mothers were significantly more often in contact with a social worker, and fathers were more often in contact with the child’s doctor. However, fathers were mostly contacted and met by a nurse/primary nurse, who was also perceived as the person who provided the most support. (Aho et al. 2011). In Finland, most of the young children who die die in a hospital or at least after the death they are taken to a hospital. After the death, the parents normally stay at the hospital for only a few hours; however, the mothers of a stillborn child may stay longer at the hospital. Previously, there has not been systematic multiprofessional collaboration to support grieving mothers and fathers.
Most of the mothers reported that the timing of the peer supporter’s first contact was mostly timely. The more often the peer supporters contacted the mothers, the more the mothers received support from the peer supporters. A study related to fathers gave similar results (Aho et al. 2011). In earlier studies, the parents have perceived peer support to be good and helpful in grief work (Dent et al. 1996, Murphy et al. 1998, Laakso & Paunonen-Ilmonen 2002, Reilly-Smorawski et al. 2002, Kreichbergs et al. 2007,.) In this research, 97% of the mothers favoured the continuation of contact by peer supporters following the death of a child. Of the fathers, 99% favoured the continuation of contact by peer supporters after the death of a child. (Aho et al. 2011). The mothers felt that with the intervention, they received versatile support both from health professionals and from peer supporters immediately after the death of their child, as well as on a long-term basis.
The results indicate that greater number of health professionals’ contacts was perceived as helpful for mothers as well as fathers (Aho et al. 2011); thus, there is a need for additional resources for health professionals to increase the number of contacts. These study results describe the mothers experience from support six months after the death of a child; however, the support intervention continued for a longer period. In the future, it would be interesting to continue the follow-up period.
This study added new knowledge about the collaboration intervention between health professionals and peer supporters when supporting grieving mothers, especially what kind of support and when implemented support mothers experience positively.
As the mothers require a lot of support in many forms, especially affect, collaboration between health professionals and peer supporters should be systematically implemented immediately after the parents have left the hospital, as well as over a longer period. Based on the experiences reported by mothers, the support intervention helped them cope after the death of their child. According to the results, grieving parents should be offered several contacts and meetings systematically after the death of their child, both by health professionals and by peer supporters.
Validity and reliability
The instrument for measuring social support used in this study was developed for this research project. The instrument has been used in a study on fathers’ grief, and it was shown to work well (Aho et al. 2011). The reliability of the instrument was also evaluated in this study with the Cronbach’s alpha coefficient with values ranging from 0·72 to 0·93. The alpha values of the instrument were good, as a value of 0·70 for the coefficient is generally considered acceptable (Burns & Grove 2005). The study aimed to control intervening variables broadly with factors that have been shown in earlier studies to be variables related to grief (Jordan & Neimeyer 2003, Flemming et al. 2008,.) The low number of participants (N = 86) may weaken the validity of the study and the generalisability of the results. The research forms were not coded, and participants who did not return them were not contacted again because of the sensitivity of the topic (Stroebe et al. 2003). The intervention was carried out in the same form for all participants in the intervention group and the form was not changed during the study (Currier et al. 2008).
Relevance to clinical practice
The support intervention for mothers after the death of their child worked well in practice, and it was also well timed. Both immediate and long-term versatile support were successfully provided to the parents. Health professionals should collaborate systematically with the third sector to help parents in their grief. In the future, more contacts and meetings after the parents have left the hospital should be added in the support intervention programme. The support intervention collaboration between health professionals and peer supporters can be used in supporting and helping grieving mothers and also fathers (Aho et al., in press). To increase collaboration, health care management should allocate resources to developing support for parents after they leave the hospital.
We wish to thank the mothers who participated in the intervention and in the study.
Study design: IN, MK, ALA; data analysis: IN, MK, ALA and manuscript preparation: IN, MK, ALA.
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