Life as next of kin

Most of the participants have lived close to the patient for many years, and most of them are deeply involved in the patient’s life and illness. The informal care responsibilities are generally extensive, in particular during aggravation of the illness before an involuntary hospitalisation.

NOK gave vivid pictures of their life with family members with serious mental illness and of their own suffering, anger, anxiety and grief for their family member. They describe feelings of deep loneliness and insufficient social support as they, due to feelings of guilt and shame-or out of loyalty to their loved one-had not permitted themselves to share these negative experiences with their social network. Accordingly, they had a great need to be seen, acknowledged and met by the health care personnel taking care of their family member.

One example of this continuous pressure over years, is the description from the parents of a child with serious eating and self-harm disorders: “So it is worse than having an infant at home. You have to be on guard almost all the time. You wonder how their mood is today, how are things, how is the look in her eyes. Yeah, you study your child the whole damn time, really! And you walk around dreading something, kind of…”

Even though there could be conflicts between patients and family members regarding the need for hospitalisation and medication, the participants’ willingness to care for their family member over time, and their strength and creativity in this matter are striking. The person with a serious mental illness might be a burden, but is also a loved one.

The importance of involvement during serious mental illness and coercion

The NOK had a varied understanding of involvement during involuntary hospitalisation. Their concerns and feelings of responsibility did not cease although health care had formally taken over the treatment responsibility. Being seen, met, included and acknowledged as informal caregivers during hospitalisation is a basic element of involvement. This also included acknowledging NOK’s own needs and interests, e.g. during a crisis related to the involuntary hospitalisation.

As caregivers they wanted to contribute with relevant information about the patient’s illness and needs, and they, in turn, needed general information about the illness, treatment and care, information about the services and routines in the institution. Some NOK also wanted more specific information, however, they generally did not want all the details, recognising that they do not have unlimited rights to be involved in personal matters. Many NOK state that they do not want private information, but need general information which they are legally entitled to, and which may offer relief and make them able to prepare their near future and improve the support they want to offer as NOK: “I do not want them to breach confidentiality; I just need to know what is happening.” (daughter of adult patient).

NOK described involvement as communication, as a dialogue, rather than a one-way information flow. Involvement and dialogue are particularly important the first time a family member is involuntarily admitted, since this is often very scary. A positive story was told by a mother: “We felt we were trusted. There was a long meeting, with two doctors (…).. and my ex and me. And it made such an impression on my ex, that he started sobbing. (…) it was such a relief to be believed. (….) and to be regarded as someone who could give some extra information, some background information about our son …”. (mother of adult patient).

Involvement did not mean treatment responsibility for their mentally ill family member. Many NOK describe that they are given too much responsibility in the treatment of their family member. Most of them state that they need to be just family members.

Noninvolvement may harm the patient

Preserving or repairing family bonds, during and after aggravation of illness and hospitalisation, was one reason why NOK felt that their involvement was necessary.

Although no longer having the main responsibility is a great relief, they describe how they and their sick family member “lose each other” due to long hospitalisations. This breaking of family bonds is particularly problematic if the family is responsible for practical and emotional support following hospitalisation.

Health care personnel do not acknowledge and request their often in-depth knowledge. NOK describe this lack of interest in their experiences and perspectives as offensive and wrong, and as a threat to the patient: How much involuntary treatment could have been avoided if they had cooperated with us? a mother of an adolescent asks. Thus, the professional may miss relevant information which could have revealed that the patient needed intervention at an earlier stage of the illness. When health care rejects this information, and in some instances ridicules them for their points of view, the necessary (extensive) intervention may be given too late.

The NOK also describe how they discover serious side effects of medication before the therapists do, and feel that these observations should be appreciated for the patient’s best interest. When family members identify drug side effects neglected by the therapists, trust is reduced, and may result in the family members taking more (often unwanted) treatment responsibility.

Experiences with inadequate involvement

The NOK’s narratives of how they were involved and met when their family member was hospitalised due to serious mental illness were related both to voluntary and involuntary treatment. Some NOK tell that their family member wanted no contact during the hospital stay, and that this lack of contact could be very difficult emotionally.

The overall impression in the interviews was that the NOK had experienced lack of involvement or had negative experiences as NOK in their encounters with the health services.

Offensive and undignified attitudes

Adult next of kin of adult patients gave the most vivid examples of non-involvement. Many describe a system which does not function, a hostile and cold system stripped of humanity and lack of trust. When their family member is admitted against their will, often initiated by them, they become particularly vulnerable. When they are treated like strangers they feel deeply wounded and humiliated. They also describe how frightening the first meeting with the hospital is: “If someone could have come and taken care of me. (…). It was very, very frightening the first time we met this insanely scary system. It is immensely frightening in the start.” (daughter of adult patient).

Instead of being acknowledged, comforted and informed, they often felt rejected and met with hostility, which may increase the family members’ feelings of guilt and anxiety:” I believe that the biggest problem is the attitudes towards the patients’ families (…) that they regard you almost as the cause of your son’s problems. (…) as an additional burden. This is an impossible starting point for communication … Because they could also see us as a resource.” (mother of adult patient).

They describe how health care personnel gave loyalty conflicts between them and the patient as an explanation for not communicating with them, although their needs are modest: “They find it unethical to cooperate with us, unethical to talk to [us]… who have the responsibility for our daughter… It is totally lacking logic and humanity, and also lack of respect which I have seen when I visit, no one greets us, no one offers a glass of water, no one asks how are you doing, this must be very tough … You are not taken seriously, you are not met …” (mother of adult patient).

In all the interviews, dialogue and lack of information are described as major problems. In involuntary hospitalisation, they worry about the consequences that this may have for the patient.

The NOK describe a health care system which is fragmented. Plans are not being made, neither for the hospital stay nor for the time after, or shared with the NOK. According to them, lack of long-term plans also reduces the value and effect of the hospital stay. “I have experienced that they call on Friday at two o’clock: ‘Hey, your mother will come home today, and she cannot be left alone (…). Yyou have to look after your mother.’ No question (…) It is your responsibility.” (daughter of adult patient).

Information and the dominating legal focus

The family members describe how they are met with information about legal regulations, in particular the rights to file a complaint about coercive measures on behalf of the patient, and that the therapists put great emphasis on sharing necessary information related to these formulations in the law. This information may feel cold and alienating. They describe health care personnel as “afraid of the law”: “… what I have received after he was hospitalised is letters, actually cold letters saying: ‘For your information, today S has been physically restrained.’ Many letters, every time it is like … (starts crying) (…) They have not talked to me at all about his condition when he is exposed to coercion. Nobody has talked, but I get letters and no one to talk to. (…) And when I call, asking how is he doing: “We have to protect his right to confidentiality.” (…) Not to know anything, not to get through to him, to know how he really is doing. (…) How can I help improve his situation, how can I cooperate? (…) How can I help my son, be there for him?” (mother of adult patient).

That 16-year-olds are legally responsible for their health care is seen as wrong by the NOK of young patients who are totally dependent on them and their surroundings. The patient’s dependence on the NOK is often not acknowledged by the health care personnel, who seem to focus on some parts of the law only. Lack of information is especially difficult for these parents who described years of worry and a deep feeling of responsibility for their suffering children who at the age of 16 may be formally responsible for their own health care decisions: “… A wall came up at the age of 16. (…) She is living at home, and she is still in school (…) and she is my responsibility … And I have no say.” (parent of adolescent).

In all the interviews, the next of kin describe situations in which health personnel seem to justify inhumane action through the law, not using common reasoning, good clinical judgment or humane considerations. Sometimes the health professionals seem to apply the law wrongfully through neglecting clauses in the law, e.g.in the cases in which the patients are not mentally competent, they, according to the participants, wrongfully give confidentiality as an explanation for not involving and informing NOK.

Experiences with positive involvement

Although some NOK describe health personnel who have tried to take care of them, these stories are rare in the interviews. These exceptions are described as being linked to the personality of the health care worker, to the ability to relate to the patient’s family in a good way, as a sign of proficiency and as a sign of individuals who have managed to keep their humanity intact in an inhuman system: “Health care personnel are part of the system, individuals who do the best they can within the frames they have to work. And we have a fantastic psychologist. He is so positive, he lifts people up.” (mother of adult patient).

The importance of being seen and treated as a human being, with respect is emphasised: “I remember the first days, we visited him every day, and I felt it was a place where a lot of people “were riding their horses,” almost warlike. Heavy things going on in there! And then suddenly someone stopped and looked at me: Hey, there you are, how are you? And just because someone was caring and asking, I started to sob. (…) Because they saw me. (…). I remember the few times someone looked at me, it was heartwarming, it meant so much, even though it was nothing big, just to be seen and smiled at and stuff”. (daughter of adult patient).

The mother of a 24 year old boy also told that she started to cry when the staff greeted her and asked how she was doing: “A few times, somebody saw me, maybe they smiled through the glass door, those little things, it really warmed me, it meant a lot”. She also talked about having been in dialogues about medication for her son; she was informed, allowed to ask questions, she was involved in discussions about medication and possible side effects. One mother of an adolescent participated in a parent education program where the physician who was responsible said that she could phone him anytime. She felt so relieved about that, but she phoned him only once. However, comments like: “Just call us if you need anything” may be of little help since the system is very often impenetrable, and it may be difficult to find the right person to talk to when you need it. Thus, a contact person in the institution can give stability and facilitate communication. Stability is also strengthened by good communication within the health care team and between different parts of the health care system.

Early establishment of an open dialogue with the patient and the family members about the illness and hospital routines was seen as important for coping, increasing trust, reducing anxiety, and preparing for the time to come after hospitalisation. NOK also described how information must be repeated. The information they get early on, when everything is chaotic, and they are in a state of shock, is easily forgotten.

A mother described that for her it was important to be allowed to see the seclusion room, to be present there and share a slice of bread with her son. It helped the horror images she carried with her.

There was a need for staff to take more active responsibility for the family by calling them, inviting them to meetings, doing home visits or offering help to work more actively with sustaining relationship in more healthy periods. Further, they pointed to the importance of establishing or strengthening a network of family and friends. Networks consisting of health care professionals, family members and friends where they exchange information and take each other’s perspectives were seen as valuable, may improve dialogue and involvement between the parties and strengthen the relationship between patient and NOK. The general practitioner is often a key person in the patient’s network, as is a nurse who is available to the family members.

The mother of an adolescent gratefully tells about how they were helped in their reconciliation work: “When the time for discharge was approaching, my son and his nurse started to map his network, and his nurse discovered that he had a hard time in his relationship to me since he felt so bad about how he had behaved towards me. The nurse suggested that the three of us should meet and dialogue about it. She reserved time for it, and assisted my son and me in verbalising what was difficult, and we reconciled. We would not have coped as well with that on our own.”