Part 1
Pediatric Case Studies
Steve Nolan
The three case studies that follow detail work that is typical of chaplains active in pediatric care. As the first writer makes clear, chaplaincy in pediatric healthcare differs from that of adult healthcare in that it needs to be informed by an understanding of child development (Smith and McSherry 2004). At the very least, this makes the already uncertain territory of assessing spiritual needs more complex. But it also means that chaplains in this area must tailor their interventions to be appropriate to the childâs developmental stage. Such interventions are likely to require a higher degree of creativity than those in adult healthcare: storytelling or imaginative play (Hufton 2006), for example, or drawing and painting, as is demonstrated in our first case.
In relating an account of his work with LeeAnn, a 12-year-old girl with cystic fibrosis, Chaplain Grossoehme describes work that is typical of his spiritual care approach to children living with chronic illness. This work aims, of course, to give spiritual support in the present moment, but equally it has, as a key aspect, a forward-looking focus in that it aims at building and maintaining a long-term relationship, knowing that one day LeeAnn or her family may need an honest and open discussion of religious or existential questions with a trusted spiritual advisor.
To that end, Chaplain Grossoehme demonstrates how chaplaincy practice can be informed and directed by a narrative approach derived from Kleinmanâs (1988) account of three archetypal narratives: chaos narratives, which lurch from crisis to crisis; restitution narratives, which speak of a return to life the way it was before; or quest narratives, which seek to learn from an event, however awful. Having first established a relationship with LeeAnn, Chaplain Grossoehme encourages her to narrate her story, which he identifies as a restitution narrative. This suggests to him that he should focus on building a relationship with LeeAnn, and also on integrating her âsecularâ interests of drawing and playing with the sacred dimension of her life. To that end, he shows how he enabled LeeAnn to describe her relationship with God through drawing and how he extended this by encouraging her to use drawing as a means of prayer.
Chaplain Grossoehme notes that a critical element of narrative theory is that listening to a story impacts the listener. He relates something of his self-reflection as people speak to him about his work. But in relating LeeAnnâs experience of living with cystic fibrosis and the burdensome regime of daily treatment, Chaplain Grossoehme also highlights the way in which hospital treatment imposed a necessary, but additional, isolation on LeeAnn that also impacted on the way he was able to deliver spiritual care. Being compliant with infection guidelines meant that Chaplain Grossoehme was required to wear a paper gown, face mask and gloves during his encounters with LeeAnn. This physical barrier not only reinforced a whole series of differences that existed between Chaplain Grossoehme, as the chaplain, and LeeAnn, as the person who was sick, but also interfered with normal facial and non-verbal communication, denaturalizing and depersonalizing the encounter. Perhaps in part to compensate for these additional barriers, Chaplain Grossoehme describes using a particular question intended to pique interest and foster reflective conversation. He has found this question works well with adolescents, and the follow-up discussion enables him to explore their answers further.
The impact of spiritual care on the chaplain comes across clearly in the case study presented by Chaplain Hildebrand. She describes her work with Erica, a young mother of a 2-year-old girl with cancer, work that had a very personal involvement. Chaplain Hildebrand became aware that, while Erica had a keen Christian faith, she shared nothing of this with the hospital social workers. Equally, while she appeared to trust Chaplain Hildebrand, there were aspects of her life, specifically details of her family, which Erica seemed not to want to share with Chaplain Hildebrand. Erica was controlling which aspects of her story she told to which professionals, possibly on the basis that different professionals would be able to accept different aspects of her lifestyle and not judge her for those aspects. Chaplain Hildebrandâs study models good practice in multi-professional working in that sharing of relevant information between professionals enabled her to make a contribution specific to her role as a chaplain, which, in this case, is related to the chaplainâs ability to enter the world of another personâs belief system and engage them with the kind of empathic understanding that is simultaneously objective and subjective. In terms of Christian theology, this case models an incarnational approach.
The study also illustrates the role intuition can play in good spiritual care, particularly when it is informed by experience and multi-professional liaison. Sensing that Erica was censoring her involvement in substance abuse, Chaplain Hildebrand demonstrates how judicious self-disclosure can deepen spiritual care work with some people. Self-disclosure is a sensitive subject within the counselling literature and, depending on orientation, counsellor-therapists either abjure all self-disclosure or recognize its place and work carefully with it (see Clarkson 2003, pp.160â167). But, while humanistic counsellor-therapists will acknowledge that, wisely used, self-disclosure âhas potential to promote positive change and to assist in the development of a good therapeutic alliance. Clearly, though, doing it well requires good clinical judgment and attunement to clientsâ needsâ (Bloomgarden and Mennuti 2009, p.3), there is little guidance for chaplains, either on the value and efficacy of self-disclosure or on its proper use. Among therapist researchers, self-disclosure is acknowledged as an inevitable and unavoidable aspect of psychotherapy: therapists constantly âgive themselves awayâ (Wosket 1999, p.51). However, therapist researchers also note an important ethical difficulty with self-disclosure in that it can be a first step towards violating the boundaries of the therapeutic relationship (Barnett 1998). Barnett (2011) recommends that therapists thoughtfully consider their motivations, the treatment needs and personal history of their clients and the differences that exist between themselves and their client. In self-disclosing to Erica, Chaplain Hildebrand demonstrates Barnettâs (2011) recommendations and offers chaplains an example of good practice in this sensitive area.
In her study, Chaplain Piderman presents another example of a chaplain empathically entering another personâs world view, in this case to work therapeutically with their beliefs. In engaging 17-year-old Angela, paralyzed by injuries sustained in a car accident, Chaplain Piderman found an adolescent buoyed initially by her motherâs assertions that âGod never gives you more than you can takeâ and âIf you pray hard enough, God will give you a miracleâ; but who later experienced profound emotional and spiritual despair by Godâs apparent absence. In this situation, Chaplain Piderman states one of her goals was âto be a sign of Godâs incarnational loveâ â making explicit what is implied in this case â by âremaining presentâ and entering Angelaâs darkness, sustaining herself by keeping her eyes on the light of hope.
Chaplain Piderman records how her work with Angela posed for her the difficult question of whether to challenge beliefs she regarded as unhelpful, if not unhealthy, and, if so, how to challenge them. This is a difficulty chaplains frequently face that calls for high levels of personal awareness and theological skill. To make an ill-judged challenge could irretrievably damage the chaplainâs relationship with the person they are aiming to help; equally, it could be ethically inappropriate. In detailing her motivations, step by step, Chaplain Piderman makes clear what she wanted to achieve and what she felt were the risks both if she challenged Angela or if she declined to challenge her. Chaplain Pidermanâs skill is such that she models how another personâs unhealthy beliefs might be challenged, with respect and compassion and in a way that opens an opportunity for healing. In so doing, she gives an account of the pastoral imperative associated with the problem of theodicy: how to reconcile suffering with the idea that God is both all-loving and all-powerful.
Clearly, this intensive work with Angela had its impact on Chaplain Piderman, and she ends her study with a brief but helpful reflection on her feelings when it came time for Angela to be discharged. Here Chaplain Piderman draws attention to the value of boundaries for a chaplainâs self-care.
The chaplain respondent to these cases, Alister W. Bull, has conducted doctoral research concerned with developing a tool to assess the spiritual needs of children in hospital. Bull identifies some common themes threading through the studies; in particular, he highlights the theoretical frameworks chaplains use to reflect upon their visits. These frameworks are often implicit and may even be unrecognized by chaplains. The reader may find it interesting to compare these implied frameworks with Richard C. Weylsâ explicit theoretical framework in the final case (Chapter 13) â what he calls his âoperative theology of spiritual careâ. Bull also draws attention to a phenomenon little discussed among chaplains: the place of pastoral power in chaplaincy encounters.
The related healthcare professional, Sian Cotton, is a clinical health psychologist and researcher in pediatric health outcomes research, with experience working closely with chaplains. Cotton considers each case in turn. She wonders whether Chaplain Grossoehme is correct to assert that relationship building can be an outcome in itself, and she is curious about why the topic of âendingsâ was not raised more with a child who has a life-shortening condition. In relation to Chaplain Hildebrand, Cotton raises a question about models of chaplaincy care, and wonders whether the desire to go beyond religious conversation to a âdeeper levelâ is achievable in shorter-term, crisis-oriented models (a point also raised by Bull). She is also struck by Chaplain Hildebrandâs goal of â[getting] religion out of the way so that spiritual care could beginâ, and she wonders about her definition of âspiritual careâ. Finally, with Chaplain Piderman, Cotton highlights an important practice-based research opportunity and the important role chaplains can play within interdisciplinary teams.
References
Barnett, J.E. (1998) âShould psychotherapists self-disclose? Clinical and ethical considerations.â In L. VandeCreek, S. Knapp and T.L. Jackson (eds) Innovations in Clinical Practice: A Source Book 16. Sarasota, FL: Professional Resource Press/Professional Resource Exchange, 419â428.
Barnett, J.E. (2011) âPsychotherapist self-disclosure: Ethical and clinical considerations.â Psychotherapy: Theory, Research, Practice, Training 48, 4, 315â321.
Bloomgarden, A. and Mennuti, R.B. (2009) âTherapist self-disclosure: Beyond the taboo.â In A. Bloomgarden and R.B. Mennuti (eds) Psychotherapist Revealed: Therapists Speak about Self-Disclosure in Psychotherapy. New York, NY: Routledge, 3â16.
Clarkson, P. (2003) The Therapeutic Relationship (2nd edn). London: Whurr.
Hufton, E. (2006) âParting gifts: The spiritual needs of children.â Journal of Child Health Care 10, 3, 240â250.
Kleinman, A. (1988) The Illness Narratives. New York, NY: Basic Books.
Smith, J. and McSherry, W. (2004) âSpirituality and child development: A concept analysis.â Journal of Advanced Nursing 45, 3, 307â315.
Wosket, V. (1999) The Therapeutic Use of Self: Counselling Practice, Research and Supervision. Hove: Brunner-Routledge.
Chapter 1
âGod tells the doctors to pick the right medicineâ
â LeeAnn, a 12-year-old girl with cystic fibrosis
Daniel H. Grossoehme
Introduction
This case study describes chaplaincy care over the course of approximately 1 year with LeeAnn (a pseudonym), a Euro-American girl who was then 12 years old. She is an only child who lives with her parents in a small community within 50 miles of Cincinnati, Ohio, a mid-sized city in the American Midwest. She attended seventh grade in her local (tax-funded) school, where she generally earned good grades. However, her school attendance had been poor; she missed 30â60 school days during the prior school year due to frequent hospitalizations and disease-related issues. LeeAnn is an engaging and social adolescent who enjoys activities typical for her age and gender: watching television, playing on the computer as well as singing. She had participated in cheerleading for her churchâs sports teams in the past. Her family are non-denominational Christians.
LeeAnn has cystic fibrosis (CF), which is a life-shortening genetic disease with a median life expectancy of approximately 37 years (US National Library of Medicine 2013). The genetic mutations of CF cause a failure of the bodyâs sodium transport system in the cells, leading to an accumulation of mucus (Wilfond and Taussig 1999). While commonly considered a pulmonary disease, CF affects multiple organs, depending on what combination of the over 1500 mutations that cause CF a person actually has. In addition to the lungs, CF may affect the pancreas or liver; it may cause diabetes, sinusitis and nasal polyps, and sterility in males. The mucus layer must be cleared from the lungs to prevent infection; its coating of the intestinal walls prevents absorption of nutrients (Wilfond and Taussig 1999). Stringent infection control precautions strongly discourage in-person contact with other persons who have CF both while in and out of the hospital (Saiman et al. 2003). Persons with CF are generally not supposed to be within 6 feet of another person with the disease, the exception being other family members who have CF since maintaining such a distance is obviously not an option.
The daily home treatment regimen for persons with CF is burdensome and typically includes some form of airway clearance (chest physiotherapy) and inhalation of antibiotics or other drugs, which are aerosolized and inhaled through a face mask. Persons with CF may also require insulin (if diabetic) and nutritional enzymes before eating or drinking anything. The time required for all these treatments may range from 90 minutes to 2â3 hours ...