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What are health visitors’ perceptions about offering support to parents who have suffered a stillbirth, neonatal death or sudden infant death syndrome (SIDS)?

22 July 2020

Yinka Ogunbanjo explores how health visitors perceive their role in supporting bereaved parents through focus groups and one-to-one interviews.

Author:

Yinka Ogunbanjo is a health visitor at Central and North West London NHS Foundation Trust

Email:

[email protected]


Research summary

  • The aim of this study was to find out how health visitors perceive their supportive role to parents who have suffered a stillbirth, neonatal death or SIDS.
  • Health visitors are often unprepared for post-death visits, or do not undertake them at all.
  • A literature review was undertaken and three themes were derived: staff grief, support and training; guilt, burnout and compassion fatigue; and lack of standards.
  • Neuman’s systems model informed this research, as it highlights how nursing intervention at primary, secondary and tertiary level can help prevent stress or bring a patient back to a state of wellness or higher level of wellness, having experienced stress.
  • Data was obtained from focus group meetings and one-to-one interviews. Four themes emerged from the analysis: bereavement policy; staff support; training needs; and parents’ choices.
  • Health visitors found their experiences challenging, due to lack of confidence. Their practices can be improved through having standards; ongoing trainings; regular debriefing sessions; and supervisions.
  • More research into health visiting intervention with bereaved parents on a larger scale, to include other NHS trusts, is recommended.

Introduction

Death is an inevitable end to human life - the expectation being for human beings to grow old and die. The sequence of life events however is sometimes reversed, leading to children dying before adults. Due to improved medical care, child death is now reduced in the West (Reid, 2013). Nonetheless, when it occurs, it leaves anguish among family and friends. Woodgate (2006) described this experience as traumatic for parents. Ellis et al (2016) also highlights the resulting mental confusion and psychological problems. Hence, it is imperative for health professionals working with these parents, to understand the grieving processes and offer support sensitively. 

Health visitors are implicated in carrying out this supportive role, because of their: accessibility to homes; and early intervention and prevention public health programme, which helps identify families requiring additional support and children at risk of poor outcomes in later years. 

However, health visitors’ ability to offer bereavement support to those parents who have experienced a child’s death is questionable, according to Rudd and D’Andrea (2013) and Wender (2012), who expressed concerns about public health nurses (such as health visitors) being unprepared – a view echoed by Perfect (2014). Dent (2002) also described how most health visitors stopped visiting after the post-death visit, leaving parents feeling unsupported. 

Perfect (2014) added that health visitors are unaware of parental support needs after the death of a child. This is in spite of government policies, such as the Healthy Child Programme (Department of Health, 2009), that emphasise the need for health visitors to assist parents requiring support with their emotions, which if left unattended, could lead to depression, complicated mourning or death (Giijzen et al, 2016; Stroebe et al, 2007).

While bereaved parents can be referred to charities, such as the Lullaby Trust, the health visitor’s role in the lives of these parents cannot be underestimated. Consequently, the government, in conjunction with charities and the NHS, has created pathways to improve bereavement care in England following child death or pregnancy loss, which highlights the need for follow-up care by the GP or HV (National Bereavement Care Pathway (NBCP) 2018a; 2018b). 

These pathways have not given advice on how health visitors should carry out follow-up care. Likewise, the trust where this study took place has no guidance on managing these patients. Furthermore, the health visiting training programme to date only briefly covers the issue of bereavement in relation to when a parent passes away. 

Is the discussion about child death considered a taboo (Turner, 2017), or do health professionals subconsciously expect the parents to easily withdraw emotionally from the deceased child and move on?
According to Hall (2014), there has been a shift away from the paradigm that successful grieving requires letting go of the deceased. This is also evident in many theories around loss. For instance, the ‘continuing bonds’ theory never sees bereavement or grieving as ever fully resolved (Klass et al. 1996). The expectation, however, is that parents would experience good psychological outcomes, involving a gradual decline in their distress until they reach some form of normality (Badenhorst and Hughes, 2007). Health visitors can be instrumental in helping them reach this state. All health professionals should have an awareness of the grief that follows perinatal loss/child death and be able to offer support sensitively.


Key focus and rationale 

The first rationale for carrying out this research was due to an occurrence in 2016. There was a need to support a father, who had experienced SIDS. Feelings of inadequacy ensued, as there had not been prior preparation to offer such level of care. Nevertheless, a post-death visit was arranged, which involved signposting the father to a charity that offers bereavement support. The father was subsequently discharged from the health visiting service, mainly due to lack of confidence and guidance on how to support men. 

The second rationale developed from a requirement to support a mother who had suffered a late stillbirth. This mother was unknown to the health visiting team, as it was her first pregnancy. Nevertheless, contact was achieved, and the mother welcomed the visit, even though she had no children. There was lack of clarity on the number of contacts that would suffice and confusion about the remit of health visiting when there are no children.  


Literature review

Different combinations of keywords from the topic, plus their synonyms, were used to search for literature via the following resources: British Nursing Index, Medline, the Royal College of Nursing online library and NICE database. 

Keywords from the research question and their synonyms

The eligibility criteria used were articles based on primary research in UK and published between 2009 and 2019, peer reviewed journals, and focused on community nursing and published in English. This revealed that there is paucity of research from a health visiting point of view. Consequently, the eligibility criteria were reviewed to include journals relating to hospital care and published in other western countries. 

Three themes were identified: staff grief, support and training; guilt, burnout and compassion fatigue; and lack of standards.

Staff grief, support and training

Aho et al. (2011) revealed that some nurses lack knowledge, expertise and skills required for supporting bereaved parents. They also found the role stressful and challenging when dealing with fathers, which aroused negative feelings such as fear, uncertainty and anxiety. 

Similarly, Kain (2012) highlighted that some neonatal nurses experience grief, but are not confident expressing it, as it comes across as a sign of weakness, hence they do not avail themselves to counselling. They also prefer peer-to-peer support from colleagues, as opposed to accessing debriefing sessions, which they described as ad hoc, poorly facilitated and inadequate for meeting their needs. 

Likewise, Jonas-Simpson et al (2013) identified that some nurses hid their grief as they felt that they had no right to grieve. They also craved for support from colleagues and highlighted the significance of colleagues or managers asking about: how they felt; how they could be supported; and prepared for the role of offering bereavement support. 

Kalu et al (2018) discovered that some midwives did not have adequate levels of knowledge and skills for supporting bereaved parents; and debriefing opportunities are not always provided. Also, some acknowledged attending study days, but felt the need for more learning opportunities. They also reported lacking bereavement support skills, in that they did not always know what to say or do, and lacked skills for supporting bereaved fathers. Moreover, they highlighted the need for more support from their organisation in the areas of debriefing and counselling services.

Guilt, burnout and compassion fatigue

Adwan (2014) discussed the grief experienced by some nurses when patients die, but correlated this with burnout and job satisfaction. A positive correlation was noted between nurses’ grief and burnout and a negative correlation between grief and job satisfaction. Adwan (2014) also highlighted that some nurses experienced guilt following patient deaths. Some also found sharing feelings with colleagues emotionally draining, which is in contrast to the views shared by Kain (2012) and Jonas-Simpson et al (2013), who implied that nurses found support from colleagues beneficial. 

Hutti et al (2016) discussed the feelings of stress and compassion fatigue that some nurses experience. Their findings showed that some nurses derived negative and positive feelings from supporting bereaved parents - negative in the sense that they had to approach bereaved patients with caution, to avoid adding to their burden, but were unsure about what to say to them. These aroused feelings of being overwhelmed, angry, exhausted, incompetent and wanting to avoid patient care, which the researchers likened to the symptoms of compassion fatigue.  

On the positive side, some nurses developed coping strategies from dealing with families following perinatal loss. They reported how their faith, colleagues and families helped to build their resilience, and how they have learnt to depersonalise the situation and are able to switch their emotions, depending on the situation they are dealing with.

Lack of standards

Kain (2012) revealed the vulnerability of some neo-natal nurses, in the absence of policies to guide them, which could lead to violation of boundaries. Reid (2013) also disclosed that some nurses experience grief, which can be exacerbated in the face of multiple deaths, but worry about the challenges of maintaining professional boundaries and the lack of uniformity in services across different professionals. 
 
Hutti et al (2016) shared similar views and reported that some nurses approached bereaved parents with caution, for fear of saying the wrong thing, which might add to their burden. 
 
Summary from the literature

The literature revealed a gap in practice of empowering nurses to deliver support confidently to bereaved parents. The nurses grieve and are usually overwhelmed when dealing with bereaved parents. Training, debriefing and counselling sessions, that will otherwise equip them is usually lacking, which could impact negatively on the nurses (leading to compassion fatigue) and the work environment (as staff might seek a less stressful job). 


Theoretical framework and Aim

Neuman’s systems model (Smith and Parker, 2015) informed this research, as it highlights how nursing intervention can help prevent stress or bring a patient back to a state of wellness or higher level of wellness after stress (Reed, 2003). For instance, when an individual experiences bereavement, the nursing intervention aims to get them to adjust to the loss and move back to a state of normality. 
Guided by this tapestry, the aim of this study was to find out how Health visitors within an NHS foundation trust perceive their supportive role to parents who have suffered a stillbirth, neonatal death or SIDS. 
 


An Adaptation of the Neuman’s Systems Model (Smith and Parker, 2015)

Methodology

Research design

Since the research question is exploratory in nature, a qualitative research method was used for answering the question (Aveyard, 2014). Within this method choice, a phenomenological design was preferred, as it facilitated answering the research question from the lived experiences of the participants (Todres and Holloway, 2010).

Research method

Data was collected via focus group meetings and one-to-one interviews, between February and April 2019. In order to sustain discussion, the questions were ordered (Barbour, 2007) and categorised into five sections namely: opening question, introductory question, transition question, key question, and ending question (Krueger and Casey, 2000).

Interview questions

  1. How long have you worked with the organisation?
  2. What have you experienced in terms of supporting bereaved parents?
  3. What contexts or situations have typically influenced or affected your experiences of the phenomenon?
  4. A recent research study concluded that HVs are the appropriate professionals to support families, following the death of their child. Do you agree or disagree with this statement? And what are your reasons?
  5. Do you think that the HV profession have the right knowledge to support bereaved parents? If yes, why do you think so? If no, what do you feel is needed to equip HVs?
  6. A recent literature review highlighted that Health Visitors may benefit from specific training in bereavement support. What are your opinions on this statement
  7. Another literature review suggested that Health Visitors might benefit from having a bereavement assessment tool or standards. What are your thoughts on this statement? Or is there anything else you think might be needed?

Ethical approval

Ethical approval was obtained from a university’s Research Ethical Committee (REC). Before the start of the study, research information and consent forms were shared with all health visitors within the trust. They were informed that their participation is voluntary and they can opt out at any point. They were also assured about anonymity. Willing participants expressed their interest by email and consent forms were obtained from them, before the start of the meetings and interviews. The discussions were audio recorded, and thematic analysis was adopted for evaluating the data. 


Results

Data was obtained from two focus group meetings of six and four participants respectively, plus two one-to-one interviews. Four themes emerged from the analysis: bereavement policy, staff support, training needs and parents’ choice.
 
Bereavement policy 

There was contention about whether health visitors should be offering bereavement support. Some felt it encroached into the field of counselling, while others felt that health visitors are well placed for this role.
 
‘I think this takes us outside the remit of health visiting. When you think about your triangle and the child in the centre, and the health and development of the child, it’s got nothing to do with death and bereavement. This is the field for psychologists, psychotherapists, and mental health nurses. It’s nothing to do with us’ – Participant D, focus group 1.
 
‘I don't agree with just not making contact, because I find it quite harsh. Sometimes you build a real rapport with the parent and they almost turn to you for advice and support, so why should it be any different?’ – Interview 2.

However, there was no consensus on what support should look like for bereaved parents. 
‘There are no guidelines: How many times do you go? When do you make your first contact? What do you talk about?’ – Participant B, focus group 2.

The participants were asked what their thoughts were about using an assessment tool to judge how the parents were coping on their bereavement journey. Thisa also led to contention because some felt that a tool could not appropriately measure someone’s feelings, and others felt that it would make contact easier and measurable.

‘I don’t know how you would assess someone's emotions using a tool’ – Participant C, focus group 1.

‘You can see where you started from and where you end up and what you are measuring – have you made a difference or not? And if not you go back to the drawing board and start again and you know what you need to do differently next time…’ – Participant A, focus group 2.

Staff support 

Participants expressed concerns about the lack of supervision or debriefing sessions, and they suggested having a specialist person on board or within each team to approach for support.

‘Where is the supervision support after this visit? We all seem to have had these traumatic visits? I’ve had several babies that have died. Where is the supervision? There isn’t any’ – Participant C, focus group 1.

One participant indirectly took responsibility for the death of a child and avoided seeing the mother when she subsequently had a baby. 

‘She’s since had another baby, but I made a point of me not being the person who sees her. Because I’m linked to dead baby, I thought it would be better for her to have a fresh start with a new HV’ – Participant B, focus group 2.

Training needs

Participants expressed concerns about the lack of supervision or debriefing sessions, and they suggested having a specialist person on board or within each team to approach for support.

‘Where is the supervision support after this visit? We all seem to have had these traumatic visits? I’ve had several babies that have died. Where is the supervision? There isn’t any’ – Participant C, focus group 1.

One participant indirectly took responsibility for the death of a child and avoided seeing the mother when she subsequently had a baby. 

‘She’s since had another baby, but I made a point of me not being the person who sees her. Because I’m linked to dead baby, I thought it would be better for her to have a fresh start with a new HV’ – Participant B, focus group 2.

Parents’ choice

There was discussion about whether health visitors should not offer more support if they get turned down or are unable to get hold of the parent at the first contact attempt.

‘When we hear that there’s been a bereavement, we try to contact them. They tend not to want us to get involved, because most of the time it is usually the early stages of pregnancy’ – Participant A, focus group 2.

Participants also felt that parents should be able to choose the professional they wish to receive support from. They highlighted the need for transparency across services, and joint decision-making regarding supporting bereaved families. 

Additionally, they discussed how the midwives should take the lead in specific cases.
‘All the services need to join together and then we can see what we can offer, in that period of time when they don’t have any kind of support. We need clear guidelines on what we should be doing’ There’s a lot to look into before we get involved’ – Participant C, focus group 2.

Participants emphasised that parents could experience support from a variety of sources and stressed the need for health professionals to recognise this and allow parents to lead. 

‘The term “support” may differ between certain cultures, take into account language barriers, cultural understandings etc… we just don’t know’ – Participant F, focus group 1.


Discussion 

Although there was agreement amongst the health visitors about having a role to play in supporting bereaved parents, this is contradicted in stillbirth cases amongst first-time mothers. Health visitors expressed that they should not be involved with these patients, as they are usually unknown to them and do not normally welcome support from unfamiliar health professionals, even though the hospitals still ‘lumber’ them with their care. 

This is debatable, as the second rationale for carrying out this study, is about supporting a first-time mother who had suffered a stillbirth. Contrary to the health visitors’ arguments, the mother welcomed support from an unfamiliar health visitor. 

The reality is there will always be patients who will turn down support from health professionals, but this should not deter them from offering the necessary service. What is needed is a clear definition of the remit of health visiting. The health visitors suggested that the midwives should be the lead professionals in cases like this, to which they proposed a joint service approach between parents and relevant services, which will facilitate information sharing and joint decision-making regarding the lead service provider. 

As it stands, due to poor information sharing, there have been instances where health visitors have visited bereaved families without having background information. Redshaw et al (2014) highlighted that some mothers disclosed that information about their babies’ passing was not shared with community healthcare professionals, leading to increased distress for them. Also, Siassakos et al (2017) discussed how hospitals tend to assume that health visitors and other community healthcare providers will continue care, following discharge of bereaved parents, without a standardised pathway for handover. 

The health visitors discussed how they had received training in rarely used skills such as resuscitation, but none in bereavement support. Instead, they had used their own skills and judgement as a guide, which led to a lack of uniformity in support and the risk of giving parents wrong advice. 

They also reported difficulty engaging with fathers, which should not be the case, as many healthcare providers are engaging in father-inclusive practices as demonstrated by Steen (2019). Obst et al (2020) also suggested a change in attitude that recognises that fathers also grieve, and are equal partners with women throughout pregnancy, childbirth and in the event of loss. 

Health visitors discussed how bereavement visitations could sometimes become traumatic, resulting in grief, to which they expressed the need for regular supervision and debriefing sessions. This is similar to Chen et al (2018), who proposed using education and discussion to prevent grief through education and discussions; and providing time and space to the caregivers, both in time and space. 

Based on the Neuman’s systems model, some health visitors demonstrated supporting parents to a place of normalcy, or a point at which they were referred on to more qualified professionals; others demonstrated not having had a sense of achievement. Coupled with grief, this can lead to work-related stress and burnout as agreed by Ezenwaji et al (2019). 


Implications for practice 

There is need for bereavement training and regular updates, which will equip and enlighten the health visitors on parental coping strategies, and give an insight into some of the reactions from grieving parents. Additionally, staff support through debriefing and supervision sessions is required. Having a specialist person on board will also be beneficial, as the health visitors will have accessibility to a trained professional, when faced with challenges. 

Furthermore, standards or local policies are needed, to help guide bereavement care and define the remit of health visiting when there are no children under five present or when parents are unknown to the team. Lastly, joint decision-making with parents is necessary, plus information sharing between all services working with bereaved families.


Recommendations for research 

  • More research into health visiting intervention with bereaved parents on a larger scale, to include other NHS Trusts. 
  • A repeat of the research, in the same trust, once the suggested recommendations for practice have been adopted. 
  • A study from the point of view of the parents, with regards to how they have experienced support from community HCPs.

Limitations 

  • Time limitation prevented more interviews and focus group meetings from being held.
  • Body language and expressions of participants were not taken into consideration during the meetings and interviews, both of which could have informed the data analysis. 
  • It was difficult to remain indifferent to the discussions of participants regarding the trauma they experienced. 

Conclusion 

This use of focus group meetings and one-to-one interviews helped elicit a comprehensive knowledge about how health visitors in an NHS trust perceive the support they offer to bereaved parents. The overall conclusion is that the health visitors found their experiences challenging, due to lack of confidence to execute this role effectively. Their practices can be improved through having standards; ongoing trainings; regular debriefing sessions; and supervisions.


Acknowledgements

Many thanks to: my academic supervisor for her support through the duration of this study; my colleagues for their encouragement; the study participants for sharing their thoughts and experiences; and my NHS Trust for funding this study. 


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