The complexity of palliative care means that the emotional distress and burden that primary family caregivers suffer under can be particularly high. The objective of this study was to determine the level of burden endured by these primary family caregivers and to identify the variables that predict it in the caregiving relatives of people who require home-based palliative care. A descriptive-correlational cross-sectional study was conducted. Socio-demographic and clinical data were collected from caregivers through a self-administered questionnaire that included questions from the 12-Item Short Form Health Survey (SF-12), Zarit Caregiver Burden Interview (ZBI), Hospital Anxiety and Depression Scale (HADS), Brief Resilient Coping Scale (BRCS), Post Traumatic Growth Inventory (PTGI), and Fatigue Assessment Scale (FAS). A total of 77 caregivers participated; 66.2% were women, and the mean age was 61.5 years. Most (62.3%) were providing care to cancer patients. From among these data, the presence of anxiety as a clinical problem (48.1%), a high average fatigue score (FAS) of 23.0 (SD = 8.5), and the prevalence of intense overload (41.6%) stood out. We found statistically significant correlations between the variables of burden, fatigue, post-traumatic growth, anxiety, and depression, with the latter two being the main predictive variables of burden. In addition, caregiver burden was associated with a worsening of health. Identifying the factors that influence the appearance of overburden will allow the specific needs of careers to be assessed in order to offer them emotional support within the healthcare environment.

ObjectivesTo explore the experiences of caregivers living with relatives affected by Crohn’s disease (CD) in a context in which the family provides social support.DesignA qualitative study based on a phenomenological approach was conducted through in-depth interviews.SettingParticipants living in Alicante (Spain) were recruitedParticipantsEleven family caregivers of people with CD were interviewed.MethodsThe in-depth interviews took place in the participants’ homes and were audio recorded and then transcribed for a qualitative thematic analysis.ResultsFive themes and accompanying subthemes were identified: (1) adaptation to the caring experience, (2) dichotomy ‘with or without me’, (3) unending burden, (4) need for knowledge and control of the disease, and (5) getting used to CD and normalising life.ConclusionThe findings contribute to an increase in the knowledge and comprehension of the experience of being the caregiver of a relative with CD, which could be useful for professionals towards improving the quality of the CD caring process. Due to the temporal dimension of CD with frequent bouts of exacerbation and remission, family caregivers must adapt and acquire skills during chronic illness evolution. Moreover, the lack of family caregivers’ inclusion and follow-up within the Spanish health system makes them feel invisible and useless, which may contribute to caregivers’ burdens.

Background and objectives People affected by Crohn's disease must adapt their lives to their new chronic condition, and therefore, understanding such experience can be helpful in planning effective interventions for the affected ones. The aim of this study was to gain an insight into such experience and how they adapted in different areas of their lives, particularly in a family‐centred culture such as the Spanish one. Method A descriptive phenomenological study was conducted through in‐depth interviews to 19 people diagnosed of Crohn's disease in the province of Alicante (Spain). Once the interviews were transcribed, data were analysed using Colaizzi's seven‐step method. Results Five emergent themes were identified: self‐protection against the unknown cause; self‐training; learning to live with Crohn's disease; perceived losses associated to Crohn's disease; and relationship with others. The results portrayed a chronically ill patient who is unconscious about the chronicity and consequently must develop strategies to keep living a similar life like the one lived before. Conclusions This study revealed that people affected by Crohn's disease struggle with the fact of being a chronic patient with uncertainty about the illness and need to learn living with a chronic condition that limits their daily lives. Furthermore, the lack of Crohn's disease a professional in charge of these people's Cares such as the specific nursing role existing in other countries support in the Spanish Health System determines the loneliness those diagnosed experience to cope with the new situation.

Accessible summary What is known on the subject? Advance care planning (ACP) in mental health is a useful tool to avoid human rights violations in mental health settings. However, ACP is not yet a reality in the Spanish context. The advance healthcare directive (AHD) is a document reflecting healthcare preferences, drafted within the framework of the ACP process, to be applied in situations in which an individual's legal capacity may be questionable. No study has explored the viewpoint of Spanish mental healthcare professionals towards AHDs in the mental health field. Considering their extensive use, further study of providers’ knowledge and attitudes is warranted. What does the paper add to existing knowledge? The study adds knowledge about the viewpoint of Spanish mental healthcare professionals towards the implementation of AHDs in their clinical practices. This study illuminates the prevailing paternalistic provider–user relationship as the main barrier surrounding AHD management in terms of decision‐making. Our findings support the need for broader awareness, staff training regarding the documentation, the conversation process and communication skills, and personalized assistance in the mental health services to implement AHDs in everyday practice. What are the implications for practice? Advance healthcare directives are a recovery tool that offers major information regarding mental health user preferences. Although they pose challenges for clinical practice, AHDs should be incorporated into interventional mental health care. Obtaining up‐to‐date perspectives held by mental healthcare professionals regarding AHDs allows the administration to determine the aspects requiring reinforcement. The implementation of AHDs in the Spanish mental health system requires macro‐ and micro‐changes, both ethically and structurally, so that mental healthcare professionals relinquish their paternalistic approach and embrace new ways of relating to users. AbstractIntroductionAn advance healthcare directive (AHD) is a written document that contains a patient‐in‐care's will and preferences concerning the treatment options available to them, should they lack decision‐making capacity. AHDs are completed within a broader framework known as advance care planning. No study has explored the viewpoint of Spanish mental healthcare professionals towards AHDs.AimTo explore the viewpoint of mental health professionals towards the implementation of AHDs in mental health.MethodA qualitative study was conducted using semi‐structured interviews that were thematically analysed.FindingsThree main themes were identified: care planning culture; barriers for the practical management of AHDs; and reasons to not honour patient‐in‐care AHDs.DiscussionProfessionals find it pragmatically difficult to stop applying traditional paternalistic practices. To implement AHDs, improving the knowledge and awareness of AHDs and management of non‐technical skills through training is required. Such training should include users and families and allow fo...