The Family Journal, Ahead of Print.
Introduction: This paper draws upon lived experiences of family members caring for a relative with a pituitary condition. The rationale for the study stems from the crucial role provided by informal, unpaid carers. Yet in the specific domain of pituitary care, they remain overlooked within empirical research. Therefore, the current study aimed to understand (a) the experiences of family members whose loved ones have a pituitary condition and (b) the information and support needs of family members. Materials and methods: Adopting a qualitative participatory approach, the study involved six family members, each of whom provided care for a loved one with a diagnosed pituitary condition. Family members volunteered to take part in an online semi-structured interview following advertisement of the study through the Pituitary Foundation UK. Data were analysed using thematic analysis. Results: Four themes illustrated the experience of family members: (a) experts by experience, (b) burden of mental load, (c) misconceptions of care create barriers and (d) battling for support, with an overarching theme of overwhelm in pursuit of understanding. Discussion and implications: Positive experiences were rooted in family members shared pursuit to seek knowledge and expertise. This came about from poor access to support, and advice which was scarcely available from general healthcare professionals. Negative experiences included emotional burden and the impact of this on family relationships. Findings concluded that family members are consistently left unsupported and systematically disempowered by healthcare services which should be helping them.