Caracterización general del comercio minorista en Cuba.

A PICO format has been used:

Population – parents bereaved following the death of a child aged 0-18 yrs. Intervention – medical follow-up, autopsy, police or social service investigation.

Comparator – no specific control or comparator groups were specified, any appropriate control group would be considered in included in studies.

42 Outcome – parents’ experiences, mental health or wellbeing.

Databases

The following databases were searched: Assia (IBSS, CSA sociological abstracts, CSA social services abstracts, psychinfo, psycharticles), Ovid and CINHAHL. Web of Science was not formally searched as initial searches showed only very few references, none of which had not been found already. Google Scholar was also used as a backup, but limited to the first ten screens of results only.

All initial searches were carried out in November and December 2010, with the

exception of Google scholar which was searched in May 2011. Searches were updated in May 2014.

Snowball searching of all included articles was carried out with another six articles found for inclusion.

43

Table 2 Search terms used for literature searches

Database Search terms

Assia 1 Child* and death or autopsy and parent* or bereavement 2 Child* and death and police or social work

3 Child* and murder and parent*

4 Child* and death or autopsy and parent* or bereavement and social worker or police or physician

Ovid 1 Grief or self-help group or prof- family relations or bereaved parent as keyword (k.w)And

SIDS or child mortality or infant mortality or cause of death 2 Death (expl- explode) – limit to <18yrs And

Bereavement expl/grief expl/parent# bereavement (k.w) And Autopsy expl

3 Death expl – limit to <18yrs And

Bereavement expl/grief expl/parent# bereavement (k.w)/parent# expl And Forensic pathology expl/ forensic science expl/ forensic# (k.w)/forensic medicine expl

4 1. Death expl – limit to <18yrs And

Bereavement expl/grief expl/parent# bereavement (k.w)/ parent#expl And P?ediatrician (k.w) or physicians role expl or physician practice pattern exp or attitude of health personnel expl or physician expl or health visitor (k.w.) or community health nursing expl

5 Death expl – limit to <18yrs And

Bereavement expl/grief expl/parent# bereavement (k.w) And Social worker (kw) or social work expl or police expl or police (kw) 6 Death expl – limit to <18yrs And

coroner expl or medical examiner expl or coroner k.w.

Cinhahl Search using ‘child death’ as word in abstract

Google Scholar

1 'bereaved parent doctor' 2 'bereaved parent social work' 3 'bereaved parent police'

44

Grey Literature

I have attempted to access as much unpublished material, as possible, that is relevant to the literature review. This has involved contacting many of the research bodies for infant death and bereaved families. The Lullaby Trust has an archive of unpublished research; unfortunately this was not accessible. (The archive was recently moved to the Wellcome Library but has not yet been catalogued). I approached The Child

Bereavement Trust, Sids and Kids (Australia) and the International Society for the Study and Prevention of Infant Death (ISPID) about unpublished studies but none had details of any. I also checked the websites of the following bereavement associations and professional bodies: British Association for the Study and Prevention of Child Abuse and Neglect (BASCPAN), Stillbirth and Neonatal Death Society (SANDS), Bereavement Care UK (Cruse) and Compassionate Friends UK. There were no relevant reports on any of these websites. I did not contact these latter organisations directly as my contacts to date with the other organisations were entirely unproductive.

I have also contacted colleagues from the police, who were members of the Association of Chief Police Officers, and social care for suggestions of how to access unpublished material as well as for unpublished research. I have been given an unpublished research report (Sterry and Bathgate, 2011) by a colleague at an ISPID conferences for inclusion in the review.

Inclusion and Exclusion Criteria

The literature review concerns the parents’ perspective so only data on parents’ experiences were included; data of professionals describing their actions towards parents were excluded. Papers had to be original research (either qualitative or quantitative) or a systematic review of research. Case reports were excluded as these are likely to be unrepresentative of wider parental experiences. Similarly the Redfern

45 Report (2001) into the organ retention scandal at Alder Hey Children’s Hospital was excluded; whilst this contained much data on parents’ experiences these were considered to not be representative of normal medical practice.

Papers had to include data on post-death interactions with professionals although this did not have to be the main focus providing there were some data concerning post- death events. Studies where the only interaction was bereavement counselling were excluded because this is the role of a trained counsellor or therapist and not of the professionals such as paediatricians, police officers or social workers following the JAA. In order to maximise data on parental experiences papers were included as long as there were some data on children aged from birth to 18 years at death. A few papers therefore include data on adult deaths, with the experiences of parents of adult children or other relatives detailed. It is not possible to separate the adult and child data from these papers, all the data are included so that child data are not lost.

Studies purely focusing on pregnancy loss and stillbirth have been excluded. While there are similarities between parents’ experiences of pregnancy loss, stillbirth and those with live born children who subsequently die, parents’ experiences of pregnancy losses and stillbirth are likely to be different to those of later bereaved parents; as the mother is a patient herself and the loss is managed by maternity services rather than the emergency department. However, there are studies with data on infant deaths that include

stillbirth and miscarriage; these studies have been included to ensure that no data are missed on post-natal infant death.

Only papers published since January 1990 have been included. This is to reflect the decline in sudden infant deaths after 1990 following the 'Back to Sleep' campaign, and also that, prior to the mid-1980s, the management of child deaths was very different to

46 current practice, and parental experiences may differ significantly. For example,

although most children, on being discovered to have died at home, would have been taken to the Emergency Department rather than directly to the mortuary, the family would have had little contact with paediatricians as such deaths would have been managed by junior emergency doctors (Walker, 1985). Similarly papers containing data relating to deaths that occurred prior to 1980 have been excluded.

Initially papers on all child deaths, regardless of cause were included. However there were several papers purely focussing on deaths of terminally ill children. The

circumstances of these children’s deaths were quite different to the unexpected deaths so I decided to exclude studies where all the deaths were expected; the JAA should not be followed for expected deaths. A few studies detail experiences of both sudden and expected deaths, these have been included to ensure no data on sudden deaths are missed.

There were a few papers only studying parents’ experiences after their child had been murdered. These papers were excluded as the parents’ experiences, particularly with the police, were very different to those of other bereaved parents. In addition if the death is clearly a homicide from the outset, these deaths are investigated by police alone and not following the JAA. Where papers of sudden deaths in children include homicide deaths as well as other sudden deaths, these have been included.

Each culture deals with death differently, and the subjective experience of parents following child death relates to the parents’ cultural background. To ensure similarity of experiences only studies from Europe, North America and Australasia are included; this also fits with my British cultural background and understanding.

47

Table 3 Inclusion criteria

Inclusion Criteria

1. Paper must be original research or systematic review of research

2. Paper must include data on parental experiences of interactions with professionals after child death.

3. Paper must include data on children aged 0 -18 years at death.

4. Paper published since January 1990

5. Research carried out in Europe, North America or Australasia

Table 4 Exclusion criteria

Exclusion Criteria

1. Papers detailing bereavement counselling as the sole interaction

2. Papers concerning stillbirth or pregnancy losses alone with no data on deaths of live born children

3. Papers only containing data relating to children dying prior to 1980

4. Papers only concerning deaths of terminally ill children

5. Papers only concerning children dying due to homicide

Selection process of studies

The titles, abstracts and full text articles were studied twice (one month apart) by me for thoroughness. A consecutive sample of 100 titles and abstracts each was reviewed by FG and PS for quality control.

There were some foreign language papers. The French papers were read by me, I was able to establish that they were not original research but editorial articles so they were excluded. A Spanish paper (Krauel Vidal et al., 1992) was read by a colleague, AS, who determined that it was relevant and a formal translation has been made. The

Scandinavian articles were read by colleagues at an international conference and a formal translation has been obtained for one Danish paper (Teklay et al., 2005).

48

Critical Appraisal

All included articles were critically appraised. Many papers had both qualitative and quantitative data in them; they were appraised according to the overall nature of the paper. For example; Covington (1993) is a qualitative analysis of a national survey, this was appraised as a qualitative paper although it also contains some descriptive statistics which are included in the quantitative results section. One quantitative study was a randomised controlled trial of a bereavement intervention (Dent 2000); this has been appraised as a cross-sectional survey as the data of interest are the survey responses of parents not the outcome of the trial.

Most of the quantitative papers were cross-sectional surveys and there are few critical appraisal tools available for these. Questionnaire-based surveys cannot prove cause and effect; this can only be done by experimental studies. Ethical constraints make trials of care for bereaved parents unfeasible, so retrospective surveys and qualitative

research are the mainstays of evidence in this field.

The main difficulty with retrospective questionnaire-based surveys is recall bias, especially as the information is gathered from the participants only once, usually months or years after the event in question (Elwood, 2007pg 44-5). External validity is key in addressing the merits of a questionnaire-based survey. It is vital to ensure that the sample of bereaved parents surveyed represents the wider population of bereaved parents; if not the results are likely to be biased and cannot be generalised outside of the study (Elwood, 2007 pg 81) .

I selected the critical appraisal tool for cross-sectional surveys from ’Making sense of Critical Appraisal’ by Olajide Ajetunmobi (2002 chapter 4), as it includes reference to development of the survey tools such as piloting and validation as well as sampling of

49 the population. The relevant critical appraisal questions are summarised in table 5 below.

Table 5 Critical appraisal questions for surveys

1 Is there a clear statement of aims and clear description of the target population?

2 Is the chosen type of survey appropriate?

3 How were the survey questions generated?

4 Were survey questions validated?

5 Was the survey instrument piloted?

6 Is the sampling frame justified?

7 Was the chosen sampling design justified?

8 What was the response rate?

9 Were efforts made to ensure a better response?

I used the Critical Appraisal Skills Programme checklist (CASP, 2010) to appraise the qualitative papers as this contains all the key elements yet is not too unwieldy. This appraisal tool focuses on the appropriateness of the selected research methods, how participants were recruited, the relationship between the researcher and participants and methods of analyses. Other appraisal tools such as Tong et al (2007) cover the same categories but in much greater detail; many papers are unable to publish at such length so this level of appraisal is not helpful. The relevant critical appraisal questions are summarised in table 6 below.

Table 6 Critical appraisal questions for qualitative research

1 Was there a clear statement of the aims of the research? 2 Was the research design appropriate to address the aims?

3 Was the recruitment strategy appropriate to the aims?

4 Were the data collected in a way that addressed the research issue?

5 Has the relationship between the researcher and the participants been adequately considered?

6 Have ethical issues been taken into consideration?

7 Was the data analysis sufficiently rigorous?

50

Data extraction, analysis and synthesis

I extracted the data and coded data separately for quantitative and qualitative papers but used the same process. Firstly, I read the papers in their entirety then re-read them extracting relevant data. During extraction I developed and refined codes based on the data. All data was coded. Coded data was reviewed and codes from both qualitative and quantitative papers combined into themes.

However, the themes included data from studies that recruited bereaved parents whatever the cause of death and data from studies that recruited bereaved parents where the cause of death was of a distinct type such as neonatal death or SIDS. Many of the studies focused only on one aspect of the parent’s experience of child death. It was important to ensure that the synthesis took account of this heterogeneity of studies. I selected the data from two papers (Finlay and Dallimore, 1991, Dent et al., 1996) to create a reference framework against which data from the other studies could be compared. These data were chosen as together the papers from which they were extracted, reported studies that recruited parents experiencing all types of child death. Finlay and Dallimore included any child death from any cause; Dent et al only included sudden deaths in children aged between 1 week and 12 years. They also studied all aspects of the experience including experiences at the time of the death in the Emergency Department, contact with the police and follow-up with General

Practitioners and paediatricians. The process of synthesis involved comparison within each theme of the data from all other papers with the reference framework.

For each theme the reference framework findings are presented first and then the synthesis of data from other studies.

51

Section 2.3 Description of results