Review of the concept ‘Family Focused Care’ Burden’ when caring for people with mental
health problems.
Introduction
According to Houlihan et al (2013), there is a growing expectation that mental health
practitioners work in more family focused ways by providing support to children, parents
and other family members. Family focused care considers fostering improvement of mental
health and wellbeing for children of parents with a mental health problem, their parents and
families (O’Brien et al., 2011). Foster et al. (2012:7) define family focused care as:
A method of care delivery that recognises and respects the pivotal role of the
family. The key element of family focused care is a philosophy of care,
incorporated into practice, which recognises the uniqueness of each consumer
and family.
This concept emerged in response to a range of papers that described strategies that assist
mental health nurses to work in more family focused ways or papers that help mental health
nurses to understand the family, the concept of family focused care and interventions to
improve the provision of care to families. Central to understanding the concept of family
focused care is a consideration of the concept of the ‘family’. While the family cannot be
described in heterogeneous terms, there is a tendency to make assumptions about the
nature and constitution of the family. In order to understand the needs of the family, mental
health nurses need to consider the composition and relationships within each family that
they interact with (Weber, 2010). While the broad professional values associated with
mental health nurses are enough to encompass interventions with all families, mental health
nurses need to consider that non-traditional or alternate families exist and may need specific
interventions tailored to meet their needs. In addition, mental health nurses need to be nonjudgmental in their encounters with families that do not fit within traditional interpretations
of the family (Weber, 2008). This includes being aware of sensitive to families cultural needs
(Hultsjo et al, 2007).
From a family and carer perspective, family-focused care means that the subjective
experience of illness is valued and the family have an opportunity to share the illness
narrative with professionals and that they are helped to maintain hope (Tweedell et al.,
2004; Hultsjo et al., 2007). Central to this is the development of a good relationship with
families and positive attitudes towards them. Establishing a good relationship with the
family and carers fosters a sense of security for them and improves their esteem and general
quality of life. Carers and family members have different expectations about the care that
their loved one receive and also about how they want to be treated themselves. Family
involvement in general is seen as very important and families expect support, respectful
behaviour, engagement and an interest in their experiences and needs. They expect the
possibility of discussing their worries and also speedy action from professionals when they
are asking for help. Mental health problems are changing things in the family and therefore
they need to be helped to “make a place for schizophrenia in the redefinition of the self
which does not negate their experience of living alongside the mental illness”.
1
Care can be experienced as a meaningful, trusting relationship between the family, service
user and professional. It can include reciprocal honesty and openness, a sense of wholeness
and autonomy facilitated by a versatile interchange of knowledge and understanding (Piippo
& Aaltonen, 2008). The meaning of mental illness is negotiated in the family and the family
could be seen as mediating context where this meaning is created (Tweedell et al., 2004).
Within the family, the meaning of mental illness has a constructed nature in this sense. As
family is a part of the larger society, it is also affected by “larger cultural discourse or set of
meanings and beliefs about vulnerability and depending” (Boschma, 2007). To understand
the meaning of mental illness to family the “meaning of their stories about illness should be
interpreted carefully by continuously linking individual experiences to larger, changing
historical context” (Boschma, 2007).
Mental health nurses need to work to empower carers and families and empowerment can
be seen as means to create a context or environment, to do counselling and engaging
participants in development (Gavois et al,, 2006) (13). It’s important to support family
members’ participation and involvement in care as it enables the sharing of information and
the use of families’ own resources and skills (Reed, 2008). Motivational interviews could be
considered as one technique to use when trying to get families’ to recognise their own
strengths (Mahone et al., 2011). Empowering way of working includes “acknowledging the
experience and knowledge that service user and family have and the skills that have been
developed to cope with impact of symptoms in everyday life” (Maskill, 2010).
There are ethical dilemmas when working with families and this includes dilemmas about
the sharing of information. This may put pressure on relationships within the family in terms
of respecting the rights of service user to confidentiality while also respecting the rights of
family caregivers to information that directly affects them (Rowe, 2010). There might also be
contradictions between family members and professionals (Rowe, 2010; Small et al., 2010)
and families’ can feel that their concerns are not overridden by professionals or that
professionals lack understanding (Rowe, 2010). In addition, family’s and patient’s
perceptions on mental health and illness,(e.g schizophrenia), might differ from the
perception of professionals. For the family members the route from onset of symptoms and
acute phase towards more stable condition could be describes as moving from “crisis to
recovery” (Gavois et al., 2006). Collaboration between the patient, family and nurse is
needed, but also collaboration between professionals (Hultsjo et al., 2007; Maskill et al.,
2010). Collaboration demands high-quality interaction skills and different skills and their
purposes have been described in the literature. Everything starts with the skills to be present
with patient and family which includes early contact, early information and protection
(Gavois et al., 2006). Listening is important, with listening, burden could be assessed and
contact could be maintained (Gavois et al., 2006). Listening should be active listening and in
his/her own interaction the nurse should be aware of the language that they use; personcentred, person-first language should be used (Mahone et al., 2011). Interaction enables
sharing with patient and family members; this provides open communication, security, and
negotiation. Foster et al. (2012) describe a framework for family focused care for children
and families with parental mental illness.
2
The need for information and knowledge is very high in the family, especially if they are
facing mental health problems for the first time. Even if there are previous experiences, level
of information might be low or there can be misunderstandings or lack of information.
However appropriate information is needed to help family member’s to understand the
mental health problems and their impact on the everyday life of the patient and for
themselves. Also information about what services are available and how these could be
accessed should be provided to family members (Tweedal et al., 2004; Sin et al., 2007). The
educational needs of family and patients may differ from their needs as perceived by mental
health professionals (Sung et al., 2004). When patients are being discharged from hospital it
is important that the family who are caring for the individual are educated about
preventative and carung approaches that could be used when the patient gets home (Sunget
al., 2004; Sun et al., 2007; Marshall & Harper -Jaques). In addition, knowledge of the risks
that children face and preventative strategies need to be included in education programmes
for nurses (Korhonen et al., 2010; Houlihan et al., 2013).
Young people who are carers feel that they are being excluded from decisions relating to
themselves and those they were caring for. In addition they feel that they are often
dismissed by professionals as unimportant, and indirectly excluded through the use of
‘professional’ and/or adult language. Young carers describe themselves as ‘the forgotten’.
This corresponds with O’Brien et al (2011) and Houlihan et al (2013) who describe children
of people with mental health problems as ‘invisible’ or ‘hidden’. The young person needs to
feel respect from the healthcare staff and the organizations and they ask for opportunities
for genuine participation in the patients care and in this way feel involved.
There are some specific barriers to family focused care. O’Brien et al (2011) suggest that
there are no specific guidelines to working with the children of people with mental health
problems and that staff felt ill equipped to relate to children about mental health and illness.
Nurses who received specifically designed education and training about working with
families viewed families in a more positive light and found families less burdensome
(Sveinbjarnardottir et al., 2011). Central to this is the adoption of an advocacy role which can
activate social and professional supports while ensuring that the unique needs of the
individuals are maintained and their rights upheld (Lagan et al., 2009). According to
Korhonen et al (2008), family related barriers such as lack of time and families fears were the
most hindering factors when implementing child focused family nursing.
Out comes - what will be realized?
How will it be realized?
Where do professionals have to reckon with?
3
What are the challenges?
Competences
Knowledge
knowledge about empowerment in mental health care
knowledge about family dynamics
Knowledge about coping skills, heir meaning in families
Knowledge about strength-based approaches
Knowledge about patients and individual family members perceptions towards mental
health problems and care.
knowledge about laws, regulations and practical guidelines
knowledge about ethical demands of nursing profession
knowledge about the rights of service user
knowledge about the right of family members
Knowledge about the clinical supervision
knowledge about different expectations of family members towards care and relationship
knowledge about other professional work and their tasks in patients’ and family’s care
Cooperation skills
Negotiation skills
High-quality interaction skills, like active listening, motivational interviewing, use of personcentered language
knowledge on different kind of families, their developmental phases
knowledge about the meaning of illness to different family members because of their own
history, knowledge and age
knowledge about the impacts of previous experiences on illnesses and care to family
knowledge on systems theories
knowledge on social factors and stigma
4
Appropriate updated information on mental health problems and their effects to patient and
family
Updated information about medication and side-effects
Updated information on social issues
Knowledge about service systems
Knowledge about rehabilitation programs and alternatives of living
Skills
High –quality interaction skills
Motivational interview skills
Supportive approach
Advocacy skills
Negotiation skills
Self-reflection skills
Skills to use clinical supervision to support own professional growth
Cooperation skills
Negotiation skills
High-quality interaction skills, like active listening, motivational interviewing, use of personcentered language
Listening skills
Skills to notice and recognize different family dynamics and dynamics with other systems
skills to work antistigmatising way
Skills to provide psychoeducation/family education
High-quality interaction skills are a prerequisite: skills to listen, hear
Skills for shared decision-making
Health teaching skills
5
Nurses actively have to encouraged the carers involvement in the psychiatric care
Nurses has to make sure that the carer is listening to and feel included in the system in order
to feel that they are understood or being responded to their needs
Attitudes
Strength-based thinking
Respecting the skills of the family
Positive (but not minimizing) viewpoint
Respectful attitude towards patient and families, thinking them as co-workers in care
Professional awareness on ethical issues
Positive attitude towards self-reflection
Willingness to enhance own professional growth
Interest towards patient and family
Professional, warm and empathic approach
Respect towards family members’ experiences, their stories, despite their age
Respect towards other professionals work and competences
Willingness to develop own interaction skills
Understanding of family dynamics
Non-judgmental way of working
Understanding and accepting the meaning of care to family and also to nurse him/herself
Respecting patients and family members as experts in their own life and care
Willingness to update nurse’s own knowledge regularly
Conclusion
6
Refernces
Boschma, G. (2007). Accommodation and resistance to the dominant cultural discourse on
psychiatric mental health: oral history accounts of family members. Nursing Inquiry 14 (4),
266-278.
Dahlqvist Jönsson, P., Skärsäter, I., Wijk, H. & Danielson, E. (2011). Experience of living with
a family member with bipolar disorder. International Journal of Mental Health Nursing, 20,
29-37.
Ewertzon M, Lutzen K, Svensson E, Andershed B. (2010). Family members' involvement in
psychiatric care: experiences of the healthcare professionals' approach and feeling of
alienation. Journal of Psychiatric and Mental Health Nursing 17(5):422-32.
Ewertzon, M., Cronqvist, A., Lutzen, K. & Andershed, B. (2012.) A lonely life journey
bordered with struggle: Being a sibling of an individual with psychosis. Issues Ment Health
Nurs, 33(3):157-64. doi: 10.3109/01612840.2011.633735.
Foster, K., O’Brien, L. & Korhonen, T. (2012) Developing resilient children and families when
parents have mental illness: A family focused approach. International Journal of Mental
Health Nursing 21, 3 – 11.
Gavois, H. , Paulsson, G. & Fridlund, B. (2006). Mental Health professional support in families
with a member suffering from mental illness: a grounded theory model. Scandinavian
Journal of Caring Science 20, 102-109.
Goodwin V & Happell B. (2007). Consumer and carer participation in mental health care: the
carer's perspective: part 1 - the importance of respect and collaboration. Issues Ment Health
Nurs, 28(6):607-23.
Hedman Ahström, B. Skärsäter I. & Danielsson E. (2011). Children’s view of a major
depression affecting a parent in the family. Issues Ment Health Nurs, 32(9):560-7.
Houihan, D., Sharek, D. & Higgins, A. (2013) Supporting children whose parent has a mental
health problem: An assessment of the education, knowledge, confidence and practices of
psychiatric registered nurses in Ireland. Journal of Psychiatric and Mental Health Nursing 20,
287 – 295.
Hultsjö, S. , Berterö, C. & Hjelm, K. (2007). Perceptions of psychiatric care among foreignand Swedish-born people with psychotic disorders. Journal of Advanced Nursing 60(3), 279288.
Korhonen, T., Pietila, AM. & Vehvilainen-Julkunen, K. (2010) Are children of the clients visible
or invisible in adult psychiatry? A questionnaire study. Scandinavian Journal of Caring
Sciences 24, 1, 65 – 74.
7
Korhonen, T., Vehvilainen-Julkunen, K. & Pietila AM. (2008) Implementing child focused
family nursing intoroutine psychiatric practice: Hindering factors evaluated by nurses.
Journal of Clinical Nursing 17, 4, 499 – 508.
Lagan, M., Knights, K., Barton, J. & Boyce, P. (2009) Advocacy for mothers with psychiatric
illness: A clinical Perspective. International Journal of Mental Health Nursing 18, 53 – 61.
Mahone, I. H., Farrell, S., Hinton, I., Johnson, R., Moody, D., Rifkin, K., Moore, K., Becker,M. &
Barker, M. R. (2011). Shared Decision Making in Mental Health Treatment: Qualitative
Findings From Stakeholder Focus Groups. Archives of Psychiatric Nursing 25 (6), e27-e36.
Marshall, A. & Harper Jaques, S. (2008) Depression and family relationships: Ideas for
healing. Journal of Family Nursing 14, 56 – 73.
Maskill, V., Crowe, M., Luty, S. & Joyce, P. (2010). Two sides of a coin: caring for a person
with bipolar disorder. Journal of Psychiatric and Mental Health Nursing 17, 535-542.
Maskill, V., Crowe, M., Luty, S. & Joyce, P. (2010). Two sides of a coin: caring for a person
with bipolar disorder. Journal of Psychiatric and Mental Health Nursing 17, 535-542.
McAndrew, S., Warne, T., Fallon, D. & Moran, P. (2012). Young, gifted, and caring: a project
narrative of young carers, their mental health, and getting them involved in education,
research and practice. Int J Ment Health Nurs, 21(1):12-9.
O’Brien, L., Brady, P., Anand, M. & Gillies D. (2011) Children of Parents with a mental illness
visiting psychiatric facilities: Perceptions of staff. International Journal of Mental Health
Nursing 20, 358 – 363.
Piippo, J. & Aaltonen, J. (2008). Mental health care: trust and mistrust in different care
contexts. Journal of Clinical Nursing 17, 2867-2874.
Reed, S.I. 2008. First episode psychosis: A literature review. International Journal of Mental
Health Nursing 17, 85-91.
Rowe, J. 2010. Information disclosure to family caregivers: Applying Thiroux’s framework.
Nursing Ethics 17(4), 435-444.
Sin, J,. Moone, N. & Newell, J. 2007. Develpoing services for the carers of young adults with
early-onset psychosis –implementing evidence-based practice on psycho-educational family
intervention. Journal of Psychiatric and Mental Health Nursing 14, 282-290.
Sjöblom, L-M., Pejlert, A. & Asplund, K. 2005. Nurses’ view of the family in psychiatric care.
Journal of Clinical Nursing 14, 562-569.
Small, N., Harrison, J. & Newell, R.2010. Carer burden in schizophrenia: considerations for
nursing practice. Mental Health Practice 14 (4), 22-25.
8
Sun, F., Long, A., Huang, X. & Huang, H. (2008) Family care of Taiwanese patients who had
attempted suicide: A grounded theory study. Journal of Advanced Nursing, 62, 1, 53 – 61.
Sung, S., Hixson, A. & Crofts – Yorker, B. (2004) Predischarge psycoeducational needsin
Taiwan: Comparison of psychiatric patients, relatives and professionals. Issues in Mental
Health Nursing 25, 579 – 588.
Sveinbjaenardottir, E., Svavarsdottir, E. & Saveman B. (2011) Nurses attitudes towards the
importance of families in psychiatric care following an educational and training intervention
programme. Journal of Psychiatric and Mental Health Nursing 18, 895 -903.
Tweedell, D., Forchuck, C., Jewell, J. & Steinnagel, L. 2004. Families’ experience During
Recovery or Nonrecovery From Psychosis. Archives of Psychiatric Nursing vol XVIII, 1 (Feb),
17-25.
Weber, S. (2008) Parenting, family life, and well bring among sexual minorities: Nursing
policy and practice implications. Issues in Mental Health Nursing 29, 601 -618.
Weber, S. (2010) Nursing care of families with parents who are lesbian, gay, bisexual or
transgender. Journal of Child and Adolescent Psychiatric Nursing, 23, 1, 11 -16.
9