Caring for family with an LTC: when the personal and professional intersect

June 2016 Vol. 16 (3)

A nurse is naturally often the ‘go to’ person when someone in the family or whānau is diagnosed with a long-term or chronic condition. PATRICIA McCLUNIE-TRUST explores the issues involved. 

McClunie TrustIn a profession that has caring and compassion as guiding values, caring for one’s own 

family can see a nurse’s professional role become intertwined with their personal role as child, sibling, spouse or member of an extended family group.

Caring is already part of the family relationships dynamic; these family relationships often come with reciprocal obligations that change over time and as circumstances alter. This sense of obligation, and a desire for the best for our relatives, draws nurses to be present in the professional care relationships of their family members, especially when complex health conditions and high demand for health services create gaps in care. 

The recently released New Zealand Health Strategy (2016) talks about a community model of care “partnering with people using health services”.  For people with long-term conditions, the strategy document positions health services “closer to home”, with people and their family members as active participants in that care. Families call on members who have the knowledge, strength and resilience to walk this care path with their relative. Nurses are often already the ‘go to’ person within both their families and communities because they have professional knowledge and know how to negotiate relationships and organisational systems.

 

The complexities of caring for family

Caring for a relative as a nurse is both rewarding and challenging, but it is also professionally complex, requiring careful negotiation of relationships with colleagues, and our own relatives. There are also professional considerations regarding the degree of involvement that nurse family members have in clinical care, and the context of that care. The following discussion sets out ideas drawn from my own experience of caring for a sibling who has chronic mental illness and my doctoral research on nurses caring for relatives with cancer-related conditions.

 

Family relationships

Being a nurse complicates our relationships with family members. Sometimes the relative in need of care is a parent, the person who inspired nursing as a career choice, or a child, sibling or life partner who develops a chronic health condition. Whatever the circumstances of the relative’s illness, nurse family members make choices about how they will walk the care path with their relative, and those choices potentially impact on relationships with others.

Two nurses in my research spoke of how their involvement in the clinical care of a parent displaced a younger non-nurse sister, who had been the parents’ major support over a number of years. Yet, for other nurses, this clinical care strengthened sibling and parent bonds.

Sometimes nurses felt that the clinical aspect of the relationship, out of necessity, came to dominate and perhaps overshadow other elements of the family relationship. The point here is that chronic illness, and the resulting need for care, changes family relationships and their sets of obligations and responsibilities. 

 

Watching over care

Nurse family members keep watch over their relative’s care, monitoring and evaluating; often interpreting clinical information for other family members, including the person with chronic illness.

For other clinicians, these nurses can be a useful, albeit sometimes challenging, source of knowledge about their family member’s condition. In my research, nurses spoke of frequently assessing their relative’s health state as part of their relationship, because clinical assessment and reasoning is an integral part of their thinking. Sometimes it was the nurse family member who recognised an acute exacerbation of a condition and called the health team’s attention to it.

These nurses explained how knowing their relative’s usual physiological state added depth to their ability to critically assess a clinical situation. However, there are also times when the clinical implications of our relative’s health state are so significant, that we do not want to interpret them.

I am mindful of the GP who sat beside me at my mother’s bedside and gently helped me to face the implications of pneumonia in a 94-year-old. I didn’t want to be told what it meant in that moment, because then I had to consider all of the implications of not treating my mother and allowing her to die. 

As nurses, we are able to interpret clinical situations in an abstract sense, but sometimes the emotional investment we have in the ill person requires a skilled professional to walk with us and guide us through these difficult decisions.

 

Speaking in a ‘clinical voice’

Health professionals often recognise nurse family members because of their ability to speak in a ‘clinical voice’, although some nurses might choose not to make themselves visible in this way.

This anonymity is not always an option though when working with health services and other health professionals that we have known in our clinical or professional work. It is important to remember that being able to speak the language of health care enables nurses to articulate their concerns, negotiate and interpret their relative’s interests, and advocate for them when necessary.

However, there are also responsibilities in doing so. In advocating certain action, nurse family members have the potential to change the trajectory of care, influencing care relationships and interventions. While all health professionals are responsible for their practice, nurse family members are also accountable to their own families for the effects of any interventions they advocate.

In my experience, forming durable and respectful relationships with members of the health team, in collaboration with the family members supporting the person with chronic illness, is probably the most important role for the nurse family member.

 

Professional considerations

I debated the distinctions between informal and formal care in my research on nurse family members.

In the home care setting these distinctions become blurred as people with chronic illness and their family learn to ‘self-manage’ some of the clinical requirements for care. These, formerly ‘clinical’ aspects of care, may involve relatively complex health tasks that go beyond those usually associated with caring within families.

In this context, the nurse family member is always capable of doing more than a family caregiver who is not a registered nurse. It is important that nurse family members negotiate the extent of these care responsibilities with the health team, and appreciate the professional requirement to provide safe, competent care, even within an informal setting.

An important consideration for nurse family members is the degree of power they hold within the care relationship. For this reason, and because care decisions may impact on family relationships, nurse family members should not be primarily responsible for clinical care, even though they may deliver aspects of it in collaboration with others.

This is reinforced in the Nursing Council of
New Zealand’s Guidelines: Professional Boundaries (2012), which suggests that nurses should not have primary responsibility for the professional care of people with whom they have other relationships. By primary responsibility, I mean the nurse who has the professional mandate to assess, plan, implement and evaluate nursing care with the health service consumer.

The Nursing Council ‘s Code of Conduct for Nurses (2012) also calls our attention to the need to work respectfully with colleagues in order to best serve health consumers’ needs.

Other health professionals are useful allies in achieving good outcomes for our relatives who live with chronic conditions. And yet, within a health service that is sometimes stretched beyond its capacity, interactions with health professionals can become fraught in the struggle to seek timely and appropriate assessments or interventions.

While I work to carefully negotiate these encounters, there have been times when I have disagreed with an assessment, plan for discharge, or wait for consultation. I have found myself using ethical arguments in an attempt to call another nurse’s attention to safety issues. While it is essential to address such issues, I am also aware of the need to be cautious about the degree of power I am capable of exercising in this space.

It is paramount to consult with others when resolving these kinds of challenges. I have found that forming relationships with nurses across the spectrum of health services provides me with a professional space to express concerns or seek alternative pathways into care. Nurses who
know me, and our family situation, can become
key advocates.

Managing my own emotional and professional responses in the care relationship I have with my sibling is also an important consideration. Family relationships are a useful source of support in being able to reflect on events and develop strategies to manage them.

Professional supervision is another support that can be used to manage the crossovers between our professional work and family life. While some nurses may have supervision as part of their work role, our professional organisations and peer relationships are also important sources of support. 

 

Author: Dr Patricia McClunie-Trust PhD RN is the principal academic staff member at Wintec’s Centre for Health and Social Practice.  This article draws partly on her 2010 doctoral thesis: Negotiating boundaries: Nurses caring for their own relatives in palliative care, Victoria University of Wellington.

 

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