Jacqui Stedmon

A qualitative exploration of adolescents’ experiences of chronic fatigue syndrome

The aim of this study is to provide a qualitative perspective of adolescents’ experiences of Chronic Fatigue Syndrome (CFS). Five adolescents who were considered to have recovered from CFS participated in semistructured interviews regarding their experience. The transcripts were then analysed using interpretative phenomenological analysis. Five main themes were identified to represent common shared experiences across participants.These related to seeking understanding around the illness, experiences of loss, perceived influences on the illness, difficult emotional experiences, and adolescents’ status post recovery. While significant efforts are being made to increase knowledge and understanding of CFS within the child and adolescent population there is still much to be learned, as is evident from this direct account of adolescents’ experiences. We identify implications for clinical practice and suggestions for future research in light of listening to the adolescents’ stories.

A review assessing the current treatment strategies for postnatal psychological morbidity with a focus on post-traumatic stress disorder

OBJECTIVE to conduct a systematic review of randomised controlled trials investigating the efficacy of treatments used to manage postnatal psychological morbidity. DESIGN a systematic review was conducted of studies in English published from 1995 to 2011. Studies were included in the review if they were randomised controlled trials and had extractable data on symptoms of psychological morbidity after an intervention designed to manage the disorders in postnatal women. Eight studies met the criteria and were included in the review. FINDINGS the number of participants ranged from 58 to 1745. The interventions included group and individual counselling, debriefing and expressive writing. Authors of only three studies reported fewer symptoms of PTSD after the intervention. Those that appeared to be helpful were counselling and expressive writing. However most authors did not assess pre-existing PTSD. KEY CONCLUSIONS AND IMPLICATIONS FOR PRACTICE the review revealed that there was no standardised scale used for diagnosis of post-traumatic stress disorder across the studies and no single efficacious treatment. A universal instrument for diagnosis of postnatal post-traumatic stress disorder is required. The intrapartum relationship with midwives appears to be an important contributor to prevention of PTSD and this requires further investigation.

Development of PBL in the Training of Clinical Psychologists

Problem Based Learning (PBL) is a recent introduction into the training of clinical psychologists and seems to be a promising strategy for supporting the development of competencies in trainees on doctoral programmes. This paper reports on the introduction and assessment of PBL in a hybrid curriculum and relates this to competence and learning outcomes. Issues in evaluation are considered. Early indications suggest that both trainees and programme staff recognise the value of PBL in acquiring skills required in clinical practice. PBL is being developed in a variety of ways that will provide more information on the transferability and generalisability of this approach.

Mothers' narratives about having a child with cancer: A view through the attachment lens.

This study explored mothers’ narratives about having a child with cancer through the novel addition of an attachment lens. Six mothers were interviewed about their experiences. Their pattern of attachment was assessed through a separate interview using the Dynamic-Maturational Model of adult attachment. The results showed marked differences in themes and performative aspects between the narratives of mothers classified as Type B pattern of attachment, balanced integration of affect and cognition, and those classified as Type A, focus on cognition and dismissal of affect. For mothers classified as Type B, narrative themes of ‘protecting my child’ and ‘questioning and evaluating the experience’ were identified. Mothers classified as Type A discussed narrative themes of ‘being strong and positive’ and ‘playing down feelings’. The presence of unresolved childhood loss or trauma appeared to inhibit ability to construct a coherent and temporally ordered narrative. It was also possible to observe attachment-based strategies operating within these narratives. Clinical implications of the work are discussed.

Narrative responses as an aid to understanding the presentation of maltreated children who meet criteria for autistic spectrum disorder and reactive attachment disorder: A case series study:

This paper offers research case studies of four severely maltreated children who had received a diagnosis of autistic spectrum disorder. A range of measures were employed to explore the children’s psychological and emotional functioning, including Theory of Mind assessment (Sally–Anne Test), attachment measures (Story Stems Assessment Profile and Relationship Problems Questionnaire), along with measures to assess general psychological and emotional well-being. Contrary to the diagnosis, the children did not reveal a theory of mind deficit. However, they did indicate a profile of difficulties in mentalisation on the Story Stems. The findings are discussed in terms of the extent to which mentalisation and theory of mind are influenced by situational factors, especially the anxiety evoked by the Story Stem attachment scenarios. Clinical implications regarding mentalisation as a state vs. trait phenomenon are discussed.

The Construction of ADHD: Family Dynamics, Conversations, and Attachment Patterns

The paper offers an analysis of the conversational and attachment processes in a family where an adolescent has been presenting with problems of ‘ADHD’ and self-harm. The research was with one family and utilised individual narrative- based attachment assessments and a semi-structured family interview. Conversational analysis was employed to focus on the processes of meaning construction between family members. Three attachment discourse themes appeared throughout the family interviews: Distress and problems as related to biology, Self–responsibility in regulating emotional problems and Problems related to family relational issues, conflicts, and triangulations. These were considered in terms of family beliefs systems/domains domains of functioning-attachment and discipline and their points of conflict and contradiction. The analysis focussed on how the conversational processes could serve to manage dilemmas regarding how actions were regarded and generated repertoires of actions. This included aspects of family dynamics, such as expressions of feelings, divided loyalties, and triangulation.

Fathers’ experiences of their child’s life-limiting condition: An attachment narrative perspective:

When a child has a life-limiting illness, parental involvement is amplified, having to respond to the increased needs of the child. Both parents are affected by the illness, yet research has largely under-represented fathers’ experiences of their child’s illness. Seven fathers were interviewed about their experiences with their child’s life-limiting illness. In addition, fathers’ attachment strategies were assessed using the Adult Attachment Interview. Narrative analysis was implemented to explore the interviews, and indicators of attachment markers employed in the Adult Attachment Interview were also identified. The dominant themes were found to be ‘experience of the diagnosis’, ‘living with the illness’, ‘struggling with emotions’ and ‘relationship with staff’. Within each theme, there were differences which related to the father’s attachment strategies. This was particularly evident in parts of their narratives recounting critical moments of threat and anxiety in the course of discovering and adjusting to their child’s illness. Importantly, the findings also suggested that the experience for the fathers stressed, and in some cases disrupted, their attachment coping strategies. All fathers told stories of trying to get it right for their children and family. Their experiences of, and adjustment to, the illness were related to their attachment strategies. The clinical implications for health professionals are discussed.

Women's experiences of living with postnatal PTSD

the mental health of new mothers is a public health concern as it is likely to have an impact on the mother herself, her close relationships and the behavioural and emotional health of her children. Post-traumatic stress disorder affects some women after childbirth. OBJECTIVE the aim of this study was to explore how women were affected by the memories of a birth that they perceived as traumatic. DESIGN in this paper the authors report the qualitative analysis of interview data from seven postnatal women reporting symptoms of PTSD. Participants were recruited from a large NHS Trust in the South West of England. Thematic analysis was used to analyse interview data collected from the seven women reporting symptoms of postnatal PTSD. FINDINGS complicating factors such as relationship difficulties and pre-existing health problems appeared to contribute to postnatal post-traumatic stress disorder and some women reported difficulty expressing emotions. The study findings confirm that women value good relationships with midwives during labour. KEY CONCLUSIONS AND IMPLICATIONS FOR PRACTICE antenatal screening for personality traits such as alexithymia (difficulty expressing emotions) may be useful and midwives should be alert to current life events that may increase womens vulnerability to post-traumatic stress disorder.

‘It is that bad but it isn’t that bad’: Exploring children’s experiences of their mother’s non-terminal cancer with a focus on attachment, resilience and trauma

Recent years have shown a welcome trend in the number of people surviving cancer. The impact of cancer survival has focused primarily on the patient perspective, and limited research has explored the effect of parental cancer on children. No research to date can be found which explores children’s experiences of parental cancer from a narrative perspective yet the way in which people tell their story is associated with emotional wellbeing. Measures of attachment, resilience and trauma were completed by 10 children (six girls, four boys aged 10–18 years) all of whom have a mother with non-terminal cancer. Each child also completed a narrative interview where they spontaneously described their experiences. Interviews were analysed drawing on narrative and thematic approaches to ensure the structural and performative as well as content of the stories could be understood. Experiences were interpreted within the context of attachment, resilience and trauma. Clinically high levels of trauma were found within this group even for securely attached and resilient children. The narrative analysis corroborated this finding. Implications for services supporting families are discussed.

“I carry her in my heart”: An exploration of the experience of bereavement for people with learning disability

Background: Bereavement is a universal experience, and yet little research has explored the lived experience of bereavement for people with learning disability (PWLD). Materials and methods: Four PWLD were interviewed about their experience of bereavement. Data was analysed using Interpretative Phenomenological Analysis (IPA). Results: Four themes were identified: ‘Needing to know: Being included’, ‘Struggling to say: Barriers to bereavement’, ‘Love after death: A continuing relationship’ and ‘Missing their presence: The wider impact of death’. Conclusions: PWLD should have the opportunity to make informed choices about their level of involvement and to develop their emotional experience. PWLD should be supported to develop a continued bond with the deceased and the wider impact of their loss recognised. ‘I carry her in my heart’: An exploration of the experience of bereavement for people with learning disability (PWLD) Nicki Thorp, Jacqui Stedmon and Helen Lloyd People with learning disability (PWLD) are one of our society’s most marginalised populations (DoH, 2001). When experiencing bereavement PWLD are particularly vulnerable because they are usually dependent upon others to facilitate their bereavement needs (Read & Elliott, 2003) and provide them with factually correct information (McEvoy et al, 2012). Overprotection can increase PWLD’s experience of disenfranchisement (Doka, 2002; Morgan & McEvoy, 2014) and a sense of being disregarded (Clute & Koybashi, 2012). Given the prevalence of psychiatric diagnoses in PWLD compared to general population rates (Emerson et al, 2012) it is perhaps unsurprising that LD has long been identified as a predictor of mental health problems following bereavement (Bonell-Pascual et al, 1999). Previous research on bereavement and PWLD Despite a common view that involvement in bereavement rituals is helpful (Hall, 2014), PWLD are often excluded (Forrester-Jones, 2013). This may be influenced by carer’s ability to cope (Handley & Hutchinson, 2013), especially if they are attempting to manage their own grief (Read & Elliott, 2003). However, exclusion increases vulnerability to disenfranchised grief, whereby loss cannot be openly acknowledged, publically mourned or socially supported (Doka, 2002). Involving PWLD when death is predictable has been highlighted as beneficial (Ryan et al, 2010) due to the opportunity for anticipatory grief (Read & Elliott, 2003). However organisational constraints and confidentiality issues have been identified as barriers (Ryan et 1 The terms ‘learning disability’ and ‘intellectual disability’ are both used. Despite growth in use of ‘intellectual disability’ (BILD, 2016) the author selected ‘learning disability’ following feedback from a consultancy group of PWLD. al, 2010). Raji et al (2003) interviewed funeral directors and religious group representatives who described a lack of involvement with PWLD, yet felt unable to intervene. Funeral attendance can help PWLD accept the reality of loss (Gilrane-McGarry & Taggart, 2007), express their grief and recall positive memories of the deceased (Gray & Abendroth, 2016). Funerals have also been found to offer concrete finality, and facilitate continuing bonds with the deceased (Morgan & McEvoy, 2014; Klass et al, 1996). Secondary losses describe the additional losses experienced following bereavement. These can be substantial (loss of the family home), or more subtle, (loss of family rituals). Secondary losses can be momentous for the individual but are often unrecognised by others, which can compound the original grief (Blackman, 2003). PWLD experience significant health inequalities and an increased risk of early death (Emerson, 2012), therefore are more likely to experience peer deaths. The absence of PWLD’s voices in bereavement research Bereavement research in LD populations has increased (Todd et al, 2013) but has predominately focused on observation of behaviour change or mental health (Dodd et al, 2005). The need to “give voice” to PWLD continues to be highlighted (Gilrane-McGarry & Taggart, 2007; Corby et al, 2015). Difficulty recruiting PWLD in research has been well documented (Cameron & Murphy, 2007) and is further confounded by sensitive topics. Previous research has focused on carers’ perceptions, citing “restricted access” (Clute and Kobayashi, 2012) or the idea that carers would be a “more reliable source” (Gray and Abendroth, 2016), which silences PWLD. Research that has recruited PWLD has acknowledged the role of “gate-keepers” (McEvoy et al. 2012; McRitchie et al, 2014) which may have biased the sample. Corby et al (2015) conducted a systematic review of the phenomenological research that has endeavoured to “give voice” to PWLD. Of the 28 papers reviewed none related to bereavement, although two explored ageing. They concluded that to understand the experience of PWLD, “hearing their views is essential rather than depending on the views of others such as staff or therapists” (Corby et al, 2015). PWLD have been recruited as participants to explore the concept of death (McEvoy et al, 2002), future planning (Bowey & McGlaughlin, 2005), end of life care (Bekkema et al, 2016) and bereavement intervention (Gilrane-McGarry & Taggart, 2007), but little has explored the lived experience of bereavement. The one exception is McRitchie et al (2014). Using a qualitative methodology, they interviewed thirteen PWLD, recruited from day centres in Scotland, who had been bereaved within the last three years. They concluded that all participants experienced disenfranchisement, either as lack of acknowledgement or support for their loss, or as a denial of an opportunity to express their grief. They reported that participants experienced a range of emotions and concluded that the way PWLD viewed their continuing relationship with the deceased influenced their experience of bereavement. Despite employing a qualitative methodology, McRitchie et al (2014) did not include a clear reflexive statement, therefore the researcher wondered whether the findings may have influenced by the prevailing discourse that bereavement for PWLD is largely disenfranchised? Participation was also restricted to those who been bereaved within the last three years which excluded those with historical experiences.