Karen Rodham

“Everyone assumes a man to be quite strong”: Men, masculinity and rheumatoid arthritis: A case-study approach

Abstract Current literature has overlooked the impact of chronic illness on masculine identity. We therefore aimed to investigate the impact of rheumatoid arthritis (a long term condition, affecting more women than men) on masculine identity. Six focus groups with 22 men with rheumatoid arthritis (RA) (data reported elsewhere) followed by five one‐to‐one interviews with men (English, mean age: 59 years) sampled to reflect a heterogeneous experience of life with RA based on knowledge gained from the focus groups. Transcripts were analysed using thematic analysis and are presented as individual case studies. Whilst the case studies provide five distinct experiences, common themes can be drawn across them, such as the importance of paid work. The men needed to renegotiate their masculine identity to deal with their RA. Two dealt with this by pushing through pain to retain masculine activities, two replaced masculine roles they could no longer do with other roles, and one rejected masculinity completely. Men with long term conditions may need to re‐write their masculinity scripts to enable them to accept and adapt to their condition. However, some men struggle with this, which should be taken into consideration when designing self‐management services for men with long term conditions.

Coping strategies, psychological impact and support preferences of men with rheumatoid arthritis: a multicentre survey

To investigate the existence and distribution of 2 typologies (termed “factors”) of men with rheumatoid arthritis (RA) identified through our previous Q‐methodology study (n = 30) in a larger sample of men with RA, and whether differences in psychosocial impact or support preferences exist between the 2 factors, and between men and women with RA.

Every Cloud Has A Silver Lining: How To Cope When Your Research Does Not Go To Plan

People living with Complex Regional Pain Syndrome (CRPS) experience frustration with the lack of knowledge and understanding of CRPS as a pain condition. In this case study, we explain how we worked with a group of people living with CRPS with the intention of helping them create a Wikipedia page about CRPS written by them, for people like them. We share what happened when our participants did not engage. We show you how we found a solution and in so doing, show how you can be creative when facing research challenges, yet still meet the essence of the original goal of the research.

Bittersweet: a qualitative exploration of mothers’ experiences of raising a single surviving twin

Abstract Loss of a child from a multiple birth pregnancy is not uncommon yet the idiographic experience of parents who have lost a single twin from a multiple birth pregnancy is underexplored. This novel study sought to explore the experiences of mothers bereaved after loss of a twin from a multiple birth pregnancy, focusing on the dual challenges of parenting and grieving. Eighteen mothers at least 12 months post loss were recruited from a private UK based Facebook page dedicated to supporting parents after loss from a multiple birth. Eligible mothers completed an independent qualitative open-ended survey to explore maternal experiences of loss. Data were analysed using Thematic Analysis. Findings represented a sense of duality for participants, with mothers experiencing conflict between roles and identities as well as the nature of their loss. Key themes identified include ‘Narrating a story of family and loss’, ‘Finding a place for the twins within the family’ and ‘A changing sense of self’. Findings fit with theoretical conceptualisations of bereavement that acknowledge retaining relationships with the deceased. Practically, suggestions for supporting mothers to identify stock answers to often asked questions about family make up were suggested.

“Living in a foreign country”: experiences of staff–patient communication in inpatient stroke settings for people with post-stroke aphasia and those supporting them

Abstract Purpose: Staff–patient communication in in-patient stroke settings is viewed as challenging for stroke survivors with aphasia and those supporting them. This study sought to explore these experiences from the perspectives of stroke survivors, their carers and healthcare professionals. Methods: A qualitative study where stroke survivors with aphasia, carers and healthcare professionals were interviewed (audio-recorded) one-to-one or via focus group. Stroke survivors were at least 6u2009months post-stroke and had a self-reported mild to moderate level of post-stroke aphasia. Transcripts for each group were analysed separately using inductive thematic analysis; followed by an integrative analysis. Results: Six stroke survivors with aphasia, 10 carers, and six healthcare professionals were recruited. Three overarching themes were identified: “being in a foreign country”, “finding a voice”, and “you’re just a number”. A dynamic model of communication is proposed offering a framework for understanding the relationships between “the context”, “the people” and “the interactions”. Conclusions: Communication was viewed as important but challenging by all three groups. To maximise staff–patient interactions in the future, attention needs to be paid to: the psychosocial needs of stroke survivors and their carers, ongoing staff training and support for the healthcare professionals supporting them, and the provision of an aphasia-friendly and a communicatively stimulating ward environment. Implications for Rehabilitation Effective staff–patient communication is viewed as fundamental to stroke rehabilitation but challenging by patients with aphasia, their carers and the healthcare professionals supporting them. To maximise staff–patient communication three key areas must be considered and targeted: those involved/affected by staff–patient communication (“the people”), factors within the “hospital context”, and “the interactions” between “the people”. Tailoring and being consistent with communication and care is paramount to avoid repeated negative communication encounters which can result in disengagement from care. Stroke rehabilitation which currently focuses on the physical fails to address the psychological/emotional and social needs of the patients and those supporting them.