Stories from the side-lines: family members’ expectations of care and treatment for their relatives with suicidal ideations

By Joeri Vandewalle.

There is growing recognition that family involvement is important in the care and treatment of people with suicidal ideations. Family members can provide valuable information about their relatives [1], engage in safety planning [2], and offer support to reduce their relatives’ loneliness [3]. Moreover, family members can support continuity of care by enabling their relatives’ access to care, follow-up care, and community integration [4]. While benefits of and opportunities for family involvement are often emphasized, the literature also highlights the burden faced by family members when caring for a relative, including feeling anxious regarding possible suicide [5,6].

Family involvement is a source of improvement in inpatient mental health care, where family members may express dissatisfaction with the provided services [5,6]. Therefore, we conducted a qualitative study in Flanders (Belgium) to better understand what care and treatment family members expect for their hospitalised relatives with suicidal ideations [7]. We collected data through semi-structured interviews with 14 family members, including partners, parents, adult children and siblings.

Central to the family members’ expectations were their ‘struggle to remain hopeful while looking through the lens of uncertainty’. This means that they were hopeful for a life without suicidality but, simultaneously, felt uncertain regarding their relatives’ conditions and what happened to them in the mental health services. Based on their hopes and uncertainties, the family members expected inpatient mental health services to be a setting in which their relatives’ safety, healing, and continuity of care were prioritized, and where they themselves could be involved and supported as family members.

‘In the beginning, when he was admitted, I was uncertain: “what will happen to him?” but I also had hope: “he will make progress and stay in a safe environment.”’

Foremost, family members expected the mental health service to be a place where their relative’s suicide risk was minimised. From this view, most family members thought that their relatives had too much freedom. They could, for instance, not understand why the professionals did not check their relative’s room for lethal means or why they allowed their relative to leave the hospital. Moreover, they considered that their relatives’ suicidal ideations are a good reason to use restraints, although some felt that restraints could be disproportionate and enacted too quickly.

‘My mother has suicidal tendencies and yet she was sent home. . . That must not be allowed! They must keep her inside and exercise more control over her.’

Also, the family members looked for mental health services that represented a healing approach and environment. They appreciated a broad repertoire of therapies and a quiet and green environment. Simultaneously, some expressed mixed feelings regarding their relatives’ medications, as they did not truly alter their thinking and could lead to drug dependence. Furthermore, the family members appreciated the professionals’ personal interactions with their relatives, such as those who spontaneously visited them for a chat. They considered such interactions important as they reflected a homely atmosphere where the professionals could connect with and talk to their relatives. However, some family members experienced that the professionals approached their relatives ‘as a number’. Also, they believed that the professionals did not have enough conversation with their relatives, and especially not the kind of conversations that could truly alter their suicidal thinking.

‘Although I know that medication is helpful when she is deeply troubled by those problems, she is not actually learning to explore or deal with her thoughts.’

‘I do not think the care was personal enough. I mean, mom was just lying there in bed. They came to give a pill and went to the next patient.’

The family members expected continuity of care. They commonly experienced difficulties in accessing inpatient wards and they encountered waiting periods that made them feel very uncertain. Once their relatives were admitted, the family members felt more confident about the continuity of care when the professionals seemed to be well-informed about their relatives and truly worked together to improve their relatives’ conditions. Furthermore, the family members experienced difficulties regarding discharge. They expected the professionals to extend the admission or refer to another setting when needed. However, the family members often experienced that the admissions were short and that follow-up care was not organized. This increased their uncertainty because they often felt ill-equipped to keep their relatives safe and respond to their suicidal ideations. Some even had to arrange follow-up care themselves.

‘The 3-week waiting period at home was a nightmare… it is like your life comes to a halt…’

‘There is no continuity at all! You fall from full admission into periods without care or treatment. That really cannot be good… Then I started searching for hours to organise the best follow-up care for her.’

By analysing the interviews, we also found that family members wanted to be involved and supported themselves. Primarily, they needed information from the professionals about their relatives’ suicidality. Also, they lacked information regarding the ward routines, the treatments, and they were often not involved in decisions – such as discharge-related decisions. This lack of information and involvement triggered in family members a sense of being marginalized; they had no control over what was happening to their relatives. Some felt even forced to use their own strategies to gather information, such as searching the internet.

‘They could have offered more information about what mom is going through and what I could do about it. Perhaps receiving a weekly report of her progress in therapy would assure me that she is okay.’

The family members valued the professionals who provided emotional support and invited them to share their views regarding their relatives’ situations. Moreover, some professionals shared insights that helped them to better understand their relatives’ suicidality. These initiatives provided a space for family members to vent their emotions and feel acknowledged as important relatives. However, others indicated that the professionals neglected their needs. They did not offer any constructive input or only approached them as ‘a source of information’. Even worse, the professionals’ communication style could make them think of themselves as ‘falling short’ and guilty of their relatives’ problems.

‘That therapist says the same things as others, but in a way that makes me feel, “Okay I can improve”. I like that style. But when I speak to this other professional it is like “You are falling short”, which makes me feel guilty.’

To conclude, the findings show that family members may feel trapped in an uncertain and disempowering situation. They experience burdensome responsibilities and are often left with a sense of being marginalized during their relatives’ admissions. Based on these findings, mental health professionals are recommended to build partnerships with family members in which they clarify their expectations of care and treatment. Moreover, they can involve family members in shared-decision making and support them to overcome feelings of uncertainty and remain hopeful regarding their relatives’ recovery [5,6,7].

Given their safety concerns, safety planning offers a concrete resource for family members to share their living situation, and gain a capacity to detect (e.g. warning signs), respond to, and cope with their relatives’ suicidality [2]. On the organisational level, a culture is needed that supports a focus on connecting and collaborating with family members [7]. Furthermore, the family members’ concerns regarding continuity of care should create a sense of urgency. They underline the need for well-coordinated care pathways that encourage access to care and effective discharge planning [4]. More broadly, our study signals a need to implement social network approaches, such as Open Dialogue, that inspire efforts to connect with and empower a patient’s support system within and beyond inpatient mental health care [8]. Overall, readers of this blog should note that our study only included supportive family members who have close contact with a relative who experiences suicidal ideation [7]. Please note that patients may also have family members who are unsupportive or do not access inpatient mental health services (because of stigma, …) [4]. Moreover, we should keep in mind that different patients might have different opinions on whether they want, and the extent to which they want, their family members to be involved in their care, or not, and to what extent, they would want information sharing [1].

References

1. National Institute for Health and Care Excellence (NICE) (2019). Suicide prevention. Quality statement 4: Involving family, carers or friends. Retrieved from: http://www.nice.org.uk/guidance/qs189/chapter/Quality-statement-4-Involving-fa mily-carers-or-friends
2. Stanley, B. & Brown, G.K. (2012). Safety planning intervention: A brief intervention to mitigate suicide risk. Cognitive and Behavioral Practice. https://doi.org/10.1016/j.cbpra.2011.01.001
3. Sellin, L., Asp, M., Kumlin, T., Wallsten, T. & Gustin, L. (2017). To be present, share and nurture: a lifeworld phenomenological study of relatives’ participation in the suicidal person’s recovery. International Journal of Qualitative Studies on Health and Well-Being. https://doi.org/10.1080/17482631.2017.1287985.
4. Hom, M.A., Stanley, I.H. & Joiner, T.E. (2015). Evaluating factors and interventions that influence help-seeking and mental health service utilization among suicidal individuals: A review of the literature. Clinical Psychology Review. https://doi.org/10.1016/j.cpr.2015.05.006.
5. McLaughlin, C., McGowan, I., O’Neill, S. & Kernohan, G. (2014). The burden of living with and caring for a suicidal family member. Journal of Mental Health. https://doi.org/10.3109/09638237.2014.928402.
6. Dransart, D.A.C. & Guerry, S. (2017). Help-seeking in suicidal situations: Paramount and yet challenging. Interactions between significant others of suicidal persons and health care providers. Journal of Clinical Medicine. https://doi.org/10.3390/jcm6020017.
7. Vandewalle, J., Debyser, B., Deproost, E. and Verhaeghe, S. (2021). Family expectations of inpatient mental health services for adults with suicidal ideation: a qualitative study. International Journal of Mental Health Nursing. https://doi.org/10.1111/inm.12864
8. Seikkula, J., Alakare, B. & Aaltonen, J. (2011). The Comprehensive Open-Dialogue Approach in Western Lapland: II. Long-term stability of acute psychosis outcomes in advanced community care. Psychosis. https://doi.org/10.1080/17522439.2011.595819.

---

---