Family Centered Care versus Child Centered Care: The Malawi Context ()
1. Introduction
Family Centered care (FCC) is a model of care that is encouraged in the care of sick children [1] [2] . FCC is defined as
“a way of caring for children and their families within health services which ensures that care is planned around the whole family, not just the individual child, and in which all the family members are recognized as care recipients”. (Shields et al., 2006, p. 1318) [3] .
Franck & Callery (2004), Coyne (1996), Ahmann & Johnson (2000) and Shields et al. (2007) assert that FCC stresses the importance of considering families and significant others as partners and collaborators in the health care of children and care of family members [1] [4] - [6] . Coyne et al. (2011) described significant others as grandparents and relations to the child. In child headed households, a significant other could be a sibling to the sick child [7] .
FCC is built around the following beliefs: empowerment, respecting personal autonomy and recognition of human rights [8] . Empowerment is described by Hawks (1992) as the interpersonal process of providing resources and enabling environment to develop, build and increase the ability and effectiveness of others to set and reach goals [9] . In FCC, family is empowered with knowledge and skills to enable them to participate in the care of the child both in hospital and at home after discharge [10] . Family’s ideas and decisions are incorporated in child’s care and their rights are respected.
In order to provide FCC and support the family, Mullen & Pate (2006) suggest development of full partnership between the family of a child and the nurse [11] . They further describe the partnership to include mutual interdependence and equal status between family and nurses. To improve parent outcomes, structured education interventions and necessary emotional support should be applied in FCC [11] . This is also emphasized by Shields and Tanner (2004) who stress that nurses should be sensitive towards the parents’ individual needs and recommend that nurses should take a deliberate effort to know and understand the family they are working with [12] .
With acute shortage of health care workers in Malawi, Family centered and child centred care are significant during hospitalization. Currently, no studies have been identified that demonstrate full partnership between the family, child and the nurse. In addition, FCC and Child Centered Care as models are not fully practiced.
2. FCC Practice in Malawi
Malawi’s health system is understaffed and FCC becomes inevitable. Hoffman et al. (2012) reported a health care professional to in patient population ratio of 1:277 [12] . As a result, family members assist with provision of basic patient care like feeding, turning, bathing and administration of oral medication [13] . This has resulted in the shifting of other caring activities from the health care professionals to family members [13] . With extended families, most patients have more than one guardian who helps with care and this prevents exhaustion on guardians as they take turns in managing the patient. However, family members are not well prepared psychologically and are not provided with enough resources to use in the caring role and this brings anxiety to them [13] . Evidence indicates inadequacies in preparation for the caring role among family members [14] - [16] . Some of the contributing factors include: absence of guidelines for orientation of family members on child care, heavy workload by nurses due to increased disease burden and nurses limited knowledge of FCC model and its concepts [13] . Children are rarely or not involved in decision making regarding their care and this result in children’s voice not to be heard hence affecting their compliance to treatment. It is important that nurses should be oriented to Family Centred and Child Centred Care models and adapt them to a Malawian setting for their effectiveness.
3. Benefits of FCC
Family centered care has benefits for children, family, and health professionals. It has proved to produce improved health outcomes for children through reduced length of hospital stay, readmission rates and emergency visits [17] - [19] . Other benefits of FCC include lower health care costs; more effective allocation of resources; reduced medical errors, decrease in legal claims and legal expenses and results in greater patient, family, and professional satisfaction [13] [20] - [22] .
3.1. Why Child Involvement in FCC?
FCC also mentions involvement of children in their care [3] . However, this does not come out clearly and it has been observed that emphasis is given more on family than the child [23] . This does not take into account the older child’s capacity for independent decision making & right to privacy and this practice sees child not being actively involved and having other needs unmet.
To make sure that children’s needs are met, it is important to involve and support them at all levels of care and the involvement should depend on their age and developmental stage [24] . Child involvement includes giving children a platform to voice out their concerns, allowing children to do what they can manage to do by themselves and acknowledging children’s capacity. It is also important to consult Children on issues affecting their health and involve them in decision making [23] . These can be achieved by communicating directly to the child not through the care giver, informing children about their care and respecting children’s views [25] . By doing these things, a child feels less threatened by the health care professional and becomes cooperative [24] . Children’s self-esteem is also promoted consequently enhancing their overall welfare [26] .
Several times during clinical consultations, health care professionals interact with parents/guardians and information is given to them without involving the child yet the child is there [25] . However, to effectively participate in the care of the sick child, Taylor (2006) points out that a parent requires advocacy, endurance and persistence if the child’s voice is to be heard and his or her needs to be met [27] . A child may not be able to communicate directly and effectively to health care workers on his or her needs and requires a parent/care giver to do this on his or her behalf. In the event that a child’s wish is against the health care workers’ plan of care, a parent has to face the conflict and decide what to do to ensure that both parties are not offended. In her personal experience Taylor (2006) explains that she felt caught in the middle when her 4 years old daughter wanted a Hickman’s line removed and a nurse said she needed to have it for a year for monthly treatment and blood tests [27] . If a parent sees that a child’s wish or alternative of care makes sense and is not accepted by one clinician, she can refer it to another clinician who may be able to understand the child’s and parent’s perspective and can grant a child her/his wish.
Another aspect to be considered when managing children is privacy. In a study by Bray (2007), privacy was one of the issues that children indicated that they need during consultations [25] . This was reported in a diary of one child as
It was a bit awkward (to ask questions) cos there was lots of people in the room, it would have been easier if they weren’t there (r4)
Similary, Espezel and Canam (2003) recommend an assessment area that is private, relaxed and comfortable to ensure effective information giving and provision of optimum holistic care in children [28] . These findings remind health care professionals to always consider issues of privacy when dealing with children during communication and examination [28] . Children are human beings just like adults therefore need to be treated with respect and dignity.
It is important to make sure that a child’s voice should be heard within the FCC framework as children and families may have differing objectives, preferences and perspectives [1] [23] . Similary, Callery et al. 2003 and Jutras et al. 2003 found that views and priorities of children with long-term illness about their health and illness differ from those of their parents [29] [30] . Asking a caregiver alone on the child’s complaints or progress is not enough to elicit all the subjective data required. It is therefore important to ask children to describe their feelings and health care professionals need to listen to them with interest and attention.
3.2. How Should Children Be Involved in FCC?
Health care professionals should put themselves at the same level with the child if child participation is to be meaningful. This can be achieved by communicating in a language of the child, using simple language that a child can understand and playing with the child where necessary. Aynsley-Green (2001) regards children and young people as competent in defining their needs. He further recommends that their opinions should be included in service evaluation and the planning of care [31] . Just like adults, children also need to be reassured that a health worker is listening to them. This can be demonstrated by utilizing the skills of reflection and non-verbal communication through paraphrasing what they say, looking at them in the eyes, nodding head or holding their hands as they talk [32] . This makes them feel valued and respected. Even in a child who does not talk, asking them in simple terms about their complaints even if they don’t respond demonstrates to the child that you care and this can make the child trust you and cooperate in your interactions. In respect for the views of the child, United Nations Convention on the Rights of the Child article 12 states that, when adults are making decisions that affect children, children have the right to say what they think should happen and have their opinions taken into account [33] . However, the Convention recognizes that the level of a child’s participation in decisions must be appropriate to the child’s level of maturity.
Giving children chance to express themselves and describe how they are feeling helps them to gain confidence and trust in the health care worker. It has shown that when children are given information that they can understand, they have increased self-esteem and are empowered to take a leading role in issues affecting their health [34] . They demonstrate reduced stress, confusion and misunderstandings and these enhance their well being [26] . Empowered children are able to follow and perform preventive and promotive activities to maintain their health [26] . When sick they are able to comply with treatment and this also lessens the guardians’ responsibilities as a child is actively involved.
3.3. What Happens If Children Are Not Involved?
When children are not involved in FCC, they become invisible and are missed out completely. Attention is given to family’s needs and the child is forgotten in the process.
As such children become dependent on guardians on everything, fail to express themselves and do not develop confidence. Children believe that guardians are better placed to communicate their needs to health care workers and think that their views cannot be taken into consideration hence lack confidence [35] .
In terms of treatment, children do not comply with treatment as they do not understand the importance and feel guardians are just forcing them. This makes them feel victimized. It is therefore important to remember that children are key stakeholders in health and healthcare, and not beneficiaries or passive recipients of services [36] .
4. Conclusion
Children are essential partners in health, involving them in decision affecting their health helps to make sure that their needs are met and their preferences considered. In addition, child participation increases success of care. To make sure that children and family needs are met in child care, it is important to balance Family Centered Care and Child Centered Care in the management of sick children.
Acknowledgements
All authors for their valued contributions.